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Liz's back has been very bad. Since we came home early from Lanzarote we have been to our GP several times and he has slowly upped the pain killers until she is now on morphine. This appears to help but it is difficult to tell as she still finds just getting out of bed very difficult. (If anyone has any tips for helping someone with a very bad back get from the horizontal to the vertical I would be extremely grateful to hear them.) She can walk, but it is more of a shuffle, and the place she is in least pain is in bed, but then we have to get her up. She has also recently started to vomit and we think this may be a side effect of the morphine but again, it isn't clear. What is clear is that some of the medication she should be taking is being flushed down the toilet, but we don't know how much. Last night she started an anti-emetic to reduce this, and we are hoping that it will help and that she will keep her medication down On top of all this, she is also attending the chiropractor two or three times a week and he seems to be helping although, again, it is difficult to tell as she varies so much from day to day. Yesterday we went to the hospital to see the haematology consultant and he has organised another bone marrow biopsy (a painful procedure, but one that will let him know exactly how far the myeloma has got), followed by a CT scan to see if anything shows up relating to her back. We then go back to see him in three weeks when we expect him to give Liz a date to start her treatment. Cancer treatment is never pleasant, and for myeloma it starts with 3 - 4 months of pills, then, if the pills have worked as hoped, we reckon she will be in hospital in Nottingham for three to four weeks. Next week we see the GP again, but he is now mainly concerned with pain management, and Liz goes to the chiro a couple of times, which should also help. That's where we are. I am working my butt off looking after her, but there really isn't a lot anyone else can do. Thank you all for your many offers of help, and I will ask if there is anything that needs doing. The house is a mess (even by my standards) but we can live with that, and we are living out of the freezer, but we can live with that too. Spirits are higher than you might expect. :-) |
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Thank you all for your emails, good wishes, and some very sensible suggestions - I will certainly follow some of them up, starting when we see the GP again next week. Liz had a better day yesterday, the anti-emetic is certainly helping with the vomiting (but hasn't eliminated it completely) and more medication is staying down. Most of the time the pain relief now seems to reduce the pain somewhat but, when asked, she describes herself as feeling "crappy", and she certainly looks poorly. Standing up, sitting down, getting into and out of bed are the worst things - she frequently gets dreadful twinges doing any of these. Finding a comfortable chair is a problem, and she has found the second most comfortable place (after bed) is her wheelchair ! Surprising no? She is also trying to come to terms with her new iPad - you may get some mangled emails :-) One thing I forgot to mention yesterday is that the consultant, when we saw him last week said to Liz "We can make you better". Hugely encouraging. I expect (hope?) things will stay like this for a few days now, so if there is nothing new here, you can assume not much has changed. |
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Big day today - the CT scan. I'm a bit worried about this as Liz virtually cannot lie flat on her back. She can't get down there and she can't get up without excruciating pain. Please wish her luck. Then, if she is up to it, another visit to the chiropractor. More later. Two things made Liz laugh yesterday - the card which won the "funniest birthday card" award for this year - "I've got furniture disease - my chest is falling into my drawers", and the thought of my friend Mike, who is planning on using a wet suit to get into his swimming pool, before entering the water, warming himself up by filling up from a kettle . |
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Looooong day yesterday. We started with a CT scan in the morning. The myeloma consultant wanted this before starting treatment, and it meant Liz lying flat on her back then getting up again - something she finds excruciating painful. We had both secretly been dreading this, (indeed, getting off an examination couch at the clinic in Lanzarote is the reason her back is as bad as it has become) but in fact the staff were delightful and helpful and, even though it was a bit painful, it wasn't as bad as either of us had expected. Then back home to wait for an appointment at the chiropractor, which went off without a hitch, and, just before 5, off to the G.P. Liz had been vomiting increasingly since Wednesday afternoon, and by late Thursday evening absolutely nothing would stay down, not even water. Everything that went down came up again 5 minutes later. This meant that she had no medication of any sort, no food and no liquid, so yesterday morning I got an emergency G.P. appointment for that evening. This was our third or fourth visit to him since we got back from Lanzarote and he was familiar with the problem. He examined Liz (another painful flat couch to negotiate) and said that she was definitely dehydrated, and he was sure the cause of most of her immediate woes was a blocked bowel. Liz has been on powerful painkillers for some time, and they in turn have a powerful blocking effect, which the usual types of medication had failed to move. For a number of reasons, therefore, he packed Liz off to hospital. So at about 6:30 on Friday night we turned up at the surgical assessment unit to be admitted. (I don't entirely understand this, but, even though Liz won't be having surgery, this problem is dealt with by surgeons. I suppose it makes sense to them……) They, again, put her on a painful flat bed to examine her and poked, prodded, stuck needles in, gave her stuff to swallow which, exactly as I told them, she brought back 5 minutes later, etc. etc. etc. The result is that, when I left just before 11 last night, she was pretty much asleep with a rehydration drip, and the promise of intravenous morphine for the back pain. I am hoping I will find her a great deal more comfortable this morning, my one worry being that they will not make allowances for just how painful and tender her back really is. More later, but in the meantime I doubt she will be wanting visitors immediately, although I will keep you up-to-date. |
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When I saw Liz yesterday morning she was so much better. Comfortable and in no pain. Absolutely out of it on morphine, but comfortable. They rehydrated her with 5 litres of saline overnight and that now looks OK, and it looks as if they have found the problem. The myeloma has caused a rapid, massive rise in calcium levels in her blood which in turn has produced pancreatitis(?) the symptoms of which are exactly what Liz was exhibiting - vomiting etc. (Any medically trained among you will recognise this as a layman's description - please bear with me). The plan, as I currently understand it, is to work on getting the various blood levels correct at which point the other problems (excluding the back pain) may well resolve themselves. I sat with Liz for large parts of yesterday, just holding her hand and reading my paper. At one point she started a sentence, went to sleep for 5 minutes, woke up and tried to finish the sentence but couldn't remember what the first part was. As I say - totally zonked, but very comfortable after three or four weeks of increasing discomfort. A great relief. No visitors today please, as she simply doesn't have the energy. Her brother John, over from France for what should have been her 60th birthday party last night, popped in briefly yesterday. She was desperate to see him and spoke to him for about five minutes, looking quite awake and lively, then went to sleep for a good two hours. P.S. A number of you have been asking after me. My primary reaction to this is one of huge relief. Liz in no longer in the distress and misery she has suffered over the last few weeks and days. Many friends have offered help - thank you all very much - but I currently have two freezers stuffed to the gunwales with food, through which I am slowly eating. I am fine - thank you. |
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Monday March
19th 07:30
Liz had a comfortable day yesterday. Still was still pretty well out
of it on the morphine, but she was rehydrated and the blood calcium
levels are coming down. Once that is back to normal, the other problems
will start to resolve - we hope. Her numbers are still being monitored
very closely. The myeloma team are coming in to see her today, and what will come
of that I have no idea. They were planning to start her treatment in
the near future, but this may well alter those plans. The trouble is,
if I am not there when people arrive, Liz is too woozy to remember in
detail what was said. My biggest worry at the moment is her back. It's still very painful,
and the chiropractor was always on about keeping her mobile. I had to
get her on the treadmill for 10 minutes every hour when I could. Now
- she has been static in bed for getting on for 72 hours….. She specifically requested no visitors when I was there yesterday.
Sorry, but she has no energy and is still feeling pretty dreadful -
her body has a great deal of recovering to do. When I was there she
was still asleep most of the time. I will keep you posted. |
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Liz reported an uncomfortable night when I saw her yesterday morning as her back is very bad. She is better if she can walk about a bit, but with oxygen, a drip, and a catheter, getting her out of bed is a major problem, and will be extremely painful the first time we try it. However, she was moved off the surgical assessment ward yesterday to a proper ward. That's good as it's quieter, the care will be consistent, and there was talk of the "physio team" getting her out of bed - but - the visiting hours are strictly regulated to 2:00-4:00 and 6:00-8:00 which means I am never there when these things are being discussed - they just won't let me in outside these hours. There is no way Liz is currently capable of any intelligent input to such a conversation, so I am a bit frustrated. She also appears to be getting quite a lot more morphine. I shall check her records when I go in today to see exactly how much. The myeloma consultant came to see her briefly yesterday, but I wasn't there so I am not exactly sure what was said, except that he again reassured Liz that they could make her better. He did ask that I be there today at 2:00 as he will be attending her again so I hope to find out more then. The bad news is that Liz's bone marrow biopsy will go ahead today as planned. This is a very painful procedure, so I hope the morphine will be doing it's job. I also hope I will be with her to hold her hand. I have done this in the past, but last time it involved a bit of a battle with officialdom. Fingers crossed please. Her blood calcium continues to drop, which is good, and the nausea has stopped which is also good. Apart from her back, everything seems to be proceeding as planned. Thank you all for your good wishes and cards which do get passed on. The hospital bans flowers however as the water in the vases and the electronics at the patients bedside don't mix well. And it's still no visitors I am afraid, Liz says she just isn't up to to it. |
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Liz reported another uncomfortable night when I saw her yesterday. Her breathing was difficult, and that can feel very frightening. In the morning she was taken down for an x-ray of her back, and I had been asked by her consultant (Dr. Allotti) to report to the ward at 2:00 so I could be there when he examined Liz, prior to her bone marrow biopsy. Liz and I were both rather surprised to find that the biopsy was taken from the breastbone not from the pelvis. Apparently the sample from here is not so good, but they did it that way as Liz couldn't lie on her side, plus they gave her a local anaesthetic which meant that, while it was still painful, it was nowhere near as bad as the pelvic one Liz has had a couple of times before. Dr. Allotti examined this and all the other information yesterday, and I have to be there again early this morning when we will discover the treatment plan (I hope). One of the things that the x-ray had shown was some fluid on her lungs, so, after Dr. Allotti had left, Liz's signs (blood pressure, temperature etc) were being taken every half hour and there was talk of whether she should go to "step down". I have no idea why it is called step down, but I think it is the place people go when they come out of what we used to call intensive care, and they are equipped to monitor patients much more closely than the resources of a normal ward will allow. In the event, I had a text from Liz late last night saying that she hadn't gone as she "wasn't bad enough". Some good news there. As Liz is virtually immobile, the nurses were concerned about sores and Liz reported a very "numb bum" so they brought her an air bed thingey. I am not sure exactly what it is, but Liz says that "it moves about" so she is not lying on the same place all the time. Moving her on to it was always going to be traumatic. She was already on a "sliding sheet" which meant that three nurses and I could slide her and her sheet across the bed, over a plastic sheet and onto the new bed. First though, Liz had to lie flattish - a very painful thing - but - wonder of wonders - they put the bed flat and Liz wasn't in pain. Fantastic. Marvellous. Wonderful. Her back was improving. Moving her was still traumatic but nowhere near as bad - nowhere near - as it would have been last week. It looks as though the pancreatitis has been the cause of the back pain as well, and as the calcium comes down, and the pancreatitis recedes Liz back is improving. That was one of my biggest worries - that the back was a separate issue that wasn't going to go away. So, we finished the day on a positive point, with Liz less groggy, in less pain, but obviously still not well. Today we find out about Liz's treatment regime which I gather will start immediately, and will not be without side effects. Liz is, as one of the nurses reminded me last night, still a very poorly lady. Keep your prayers and good wishes coming in. P.S. I have to say that we are both really impressed by the care that Liz is receiving. All the nursing staff we have come in contact with have been exemplary. They are all, without exception, very caring of Liz, and nothing seems too much trouble. In view of the recent horror stories from the N.H.S. it is pleasing to be able to report that the Royal Derby Hospital can be very proud of it's nursing staff. P.P.S. Thank you all for your emails. There are so many that I cannot possibly reply to them all, so I hope you will accept this as a generic "Thank You". |
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Bad morning yesterday. I don't know what it was but Liz was suffering hallucinations, panic attacks, fits of wriggles when she couldn't lie still. Not nice. It started at 7:30 when I got a call from Liz sounding very distressed begging me to "come in now". I dropped everything and rushed in, even though I wasn't sure whether I would be let in to the ward. At the door I explained but was told that the ladies were being washed and I couldn't go in. I asked them to tell Liz I was there, and settled down to wait. Within 5 minutes I was told I could go in. I suspect (but don't know) that Liz was so distressed that they couldn't console her. Anyway, I settled her down and, being very aware that I wasn't really wanted there, left about 10 minutes later to get some breakfast and wait until 10 when Dr Allotti was due. He confirmed what we already suspected that Liz now has myeloma which they need to start treating with chemotherapy, that she has pancreatitis which I understand may take a week to calm down, and that she can't start the chemo until that has cleared up. In the meantime she has been started on steroids - part of the myeloma treatment that she can stand. There, I suspect, is where we will remain for the next few days. Many, many doctors saw Liz yesterday, many more took blood from various of her limbs, and yet more listed to her chest and abdomen. There was general consensus that she had fluid on her lungs and needed to sit up. The hospital bed is very clever and will sit her up, but she tends to slip down the bed again, leaving the bed, as the "head" part raises, just bending her back which is still painful. We pulled her up a couple of times, but 10 minutes after doing so, she had slipped back down again. While the medical staff were scratching their heads, I nipped out to Homebase and bought a 12" high plastic storage bin which now graces the foot of Liz's bed, and she hasn't slipped down since. One up for the engineers. After all of this, she was finally moved to the step down unit yesterday afternoon. The poor nurses on her ward just didn't have the resources to give her the attention she required. At one point they were taking her numbers every 20 minutes - and there were only 2 nurses to cover 16 (I think) people. Enough normally, but not with someone in Liz's state on the ward. So she is now monitored continuously, she can sit up, she is one of only two patients per nurse, and she has a morphine pump she can dose herself with as and when she needs it. When the nurse gave her the button, she (Liz) said "like this?" and pressed it - and promptly went to sleep for 20 minutes. The morphine pump is a slight concern, but I shall watch how she is using it. I know about the non-repeat mechanism, but still, it's morphine and at one point yesterday Liz thought it was the nurses call button. When I left her last night at 8:00, she had been fast asleep for two hours, and didn't even stir when I kissed her good night, so I hope she had a quiet night. |
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Liz had a better day yesterday. The doctors and nurses were really looking after her well. When I got there at about 11, several doctors had already been round and the nurses were about to get her out of bed for the first time in a week. About an hour later, she was up, and sitting in her chair. She had been washed, dried and polished, and was looking much better all round. She stayed up for a couple of hours then decided she needed to go back to bed. I was sent out, but it took a couple of chunky looking nurses, a zimmer frame and much grunting to get her back into bed. She looked better for being up for a bit. The current concern is the fluid on her lungs and so she has a nebulizer on permanently and is encouraged to cough, although this is painful. A nurse showed her how to use the morphine pump to minimise the discomfort. She is also eating again for the first time in over a fortnight. A couple of mouthfuls of fish pie for lunch, and a little soup with jelly to follow for dinner. No blowout feast to be sure, but a step in the right direction. At one point in the afternoon. one of the senior doctors took me to one side and led me off to the "quiet room". Scared me to death I can tell you. However, I had asked to be kept up to date with what was happening to Liz and this was the result. The doctors are in and out all the time, and if I'm not there when someone says something I have to get it from Liz. Obviously, anything I get from Liz has been through two morphine hazes (one as she listened and one when she told me) so may not be reliable. What he said was encouraging - he finished up "Am I happy with her condition? No. Am I worried about her? No." So there you have it - Liz's condition in a nutshell. The large number of doctors around is really amazing. At one point Liz took a sip of water and it went down the wrong hole. She choked and 3 doctors and 2 nurses were on the spot instantly. Can there be such a thing as a surfeit of doctors? One result of all this attention, however, is that Liz remains exhausted. She needed to go to sleep by 6:30 last night, so that is when I left. Lets hope she had a quiet night. P.S. My plastic storage box at the foot of Liz's bed has elicited much comment from the medical profession. Perhaps a Homebase salesman could capitalise on this and make a killing here? |
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Sorry there was no posting yesterday - you will see why. Friday started well enough, when the nurses got Liz out of bed to sit in her chair. It was a bit difficult as Liz couldn't help much, but they managed it and Liz had a wash and one of the nurses washed her hair. A couple of hours later, when Liz wanted to go back to bed it was even harder. Liz couldn't stand up and they had to get her into bed with a hoist. This wasn't entirely surprising as Liz has been in bed for 7 straight days, and hadn't really been doing any exercise for weeks before that. However, at about 3:00 the myeloma nurse came round to see Liz and we happened to mention in it. She pretty much took off like a scalded cat. By 3:30 a two doctors from neurology were there checking Liz's legs which weren't working very well. By 4:00 Liz had an MRI scan booked. At 4:30 she went down to the MRI scanner. At 6:00 she returned from the MRI scan. At 6:05 two of her doctors arrived to tell us the result. The myeloma had weakened Liz's spine and one of the vertebrae (T3) had collapsed, trapping the spinal column. The spinal team had been called in. At 6:30 the surgeon was with us and explaining that in cases like this, delay is disastrous. You have 24 hours to do some repair work, then it is too late - the nerves are damaged beyond repair. Some desperate thinking. Liz's right leg had been moving that morning when they got her out of bed - the immobility was something new and only a few hours old - but the left? I couldn't remember exactly when the first signs had appeared, but I was pretty sure it had been the previous afternoon, perhaps even earlier. We had a choice. We could do nothing in which case Liz would definitely lose the use of her legs, or we could go ahead with spinal surgery in which case she might not. The surgeon pointed out the dangers of surgery and the fact that there were many unknowns. Had we already waited too long before reporting the immobility? The surgeon pointed out that the MRI had showed general deterioration of the spine and he would be using steel rods and screws to effect the repair. Was the remaining bone strong enough to hold a screw? Was Liz strong enough to cope with the anaesthetic? The anaesthetist was on his way in to see. We had very limited time - another booking had been cancelled to free up a theatre for 7:30, the surgical team were already scrubbing in, and Liz was not only out of it on morphine, but worse, realised that she was out of it, and that an important decision was being made. After one of the most desperate half hours in my life, with some help from Julia (who had rushed in when I phoned at 6:30) and from a wonderful nurse, we decided that in fact, it was a no brainer. We would go ahead - if the anaesthetist agreed Liz could cope with it. At 7:00 the anaesthetist appeared and after 10 minutes, declared that Liz was strong enough. At 7:30 they walked Liz down to the preparation area and I kissed her, promised her I would be there when she woke up, and sent her off to the operating theatre, with the prayers of an awful lot of people going with her. She was now in the care of (what two with local medical knowledge had told me were) the best local spinal surgeon and the head anaesthetist. The surgery was probably going to take at least a couple of hours, and Liz would then go through recovery, another half hour or so, so Julia decided that she would take me home, feed me, and bring me back at around 10:30. Three hours later we were back and in the little flat that the hospital maintains for just such emergencies, waiting. At 11:30 the surgeon appeared to tell us that Liz was in recovery and that, good news, the surgery had gone as well as he could have hoped. Tangible relief all round. Just before 1:00 Liz came back to the ward but was very dozy. I sat with her for half an hour as she went in and out, and then decided I needed some sleep. A bed, a toothbrush, and a phone charger at home seemed a better bet than a couch, no toothbrush, and a useless phone so I went home and got to bed about 1:30. By 4:30 I was still awake so got up, went back in, and there I stayed. The fantastic news is that by Saturday afternoon Liz had started to get a very limited mobility back in both legs. As I had suspected might happen, at the moment the right leg is better than the left, but she reports feeling in both legs, and both legs feeling the same. I watched a doctor test her reflexes and (from a layman's point of view) both knee reflexes worked, the right ankle reflex worked but the left was poor at best, and the toe curl reflex (when the sole of the foot is scratched) was absent in both feet. Nevertheless - this is a wonderful result given the alternative. We won't know the full extent for a week maybe two, and I expect that Liz will need a lot of physio. All unknown, but the best result we could have hoped for from a very bad night. |
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One big event yesterday - Liz lifted her right leg right off the bed. Most of the function has returned to her right leg, and although one or two movements are a bit weak, she appears to be able to do most things, and she has feeling everywhere. The left has mobility in some muscles, and, as yet, little in others, but Liz reports feeling everywhere. The physios came in yesterday to asses her, and although there was no real comment, reading between the lines it looks as if she should improve from where she is, but the left leg is always going to be weak. Other than that, yesterday was blessedly uneventful. Liz had less pain than she has had recently, so didn't use the morphine pump as frequently with the result that she was more lucid than she has been for days. She was well enough to take communion yesterday afternoon, although there was a bit of a kerfuffle when it was realised that nobody knew whether Liz could have alcohol. Not a question that often gets asked when patients are in Liz's condition I guess. Finally, a request. No late night calls or texts please. I was just dropping off to sleep last night at about 11:00 when a text arrived on my phone. Not only did it wake me up, but having woken up I was unable to get back to sleep at all and spent a sleepless night. If I am to look after Liz I need my sleep. I can't turn the phone off as Liz may call, so no calls / texts after 21:00 please (and remember that texts are not instant, they can and do take time to arrive). Thank you. |
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I rather hope that yesterday marked the end of the firefighting phase of Liz's illness and the start of her recovery. Her blood calcium has long since been normal, it has been some time since the pancreatitis was mentioned, and it's symptoms seem (to me) to have gone. Most of the pain seems to have disappeared, apart from her breastbone, and the doctors are provisionally putting this down to growths on her ribs caused by the myeloma. The spinal unit are still watching her legs, and have cleared her to get out of bed. The physios gave her some starter exercises yesterday and may get her out of bed today. Both legs continue to improve in very small steps though. Her right leg still appears to have all its functions, but with restricted movements. That is, it would appear to be able to move in all the directions that a leg can move, but only in small amounts. This should, obviously, improve with exercise and this is the hope. The left has some movements which, at the moment Liz just can't make. She appears, for example, to unable to lift the leg from the hip, but can make a pumping action with the foot. How much of this is permanent loss, how much will return in part or completely, we still don't know. The myeloma team spent half an hour or so with us yesterday, discussing their plans for her treatment. The biggest problem currently is the aggressiveness of Liz's myeloma - the surgical team need Liz's immune system to be working flat out to heal the wound and prevent any infection, but the myeloma team need to disable it to let the chemotherapy work. The compromise decided on is to postpone the start of the chemo for a week, rather than the two weeks that would be preferable. In a couple of weeks there will be some radiotherapy (painless, we have been assured) to remove the growths on her ribs and spine caused by the myeloma, but how much of this treatment will be as an in-patient and how much as out-patient we don't yet know. The current thinking is that as soon as Liz is well enough to come home, she will - neither the chemo nor the radiotherapy are, in themselves, enough to keep her in. The chemo used for myeloma comes in tablet form, can be taken at home, is less unpleasant than many, and although there are possible side effects, they may well be minor and, critically for Liz, total hair loss is not expected. The chemo continues until one of the critical blood counts reduces sufficiently, usually 4 to 6 months, and then they perform a stem cell transplant. We haven't looked too closely at this yet, but it appears to be pretty unpleasant, and involve 3 to 4 weeks in hospital, probably in Nottingham. That is all in the future though, and yesterday the morphine was down again, and I began to see Liz. A very limited program of visiting has been organised, currently restricted to family, but a step in the right direction. Thank you all again for your good wishes, and for all the cards and emails. I can only hope you will understand that there simply isn't the time to say a more formal "thank you" or to reply to them all. |
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Not a lot to report from yesterday. As the pain is easing, Liz was taken off the morphine pump yesterday and she now has occasional subcutaneous injections. The idea is to wean her off the morphine I think. I have been slightly worried about this - morphine is highly addictive and Liz has been on it now for two weeks. I hope it is OK. Slowly the drip lines are reducing in number, and I think she has finally been handed over to the care of the myeloma team. The team dealing with the pancreatitis declared themselves happy yesterday, and I think the spinal team have done likewise, so Liz should be moving to the myeloma ward some time today. That's pretty much it for yesterday - a quiet day. |
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Another uneventful day yesterday, and after last week, uneventful is good. Liz is now off all her drips, although she still has several needles sticking out of her which are used for various medications, and is looking better for it. She goes up and down, and she still gets worn out and sleepy a lot, but when she is awake a lot of the medication induced haze has gone. She does get some rather frightening dreams, although they seem all too real, and she gets quite upset by them. A number of people (including me) report similar experiences when morphine has been used, and in my case I remember it being how I imagine a bad acid trip to be. It was certainly very frightening, so frightening that I wouldn't go back to sleep in case I had another. I hope these will disappear as the morphine wears off. She was hoisted out of bed yesterday and sat in her chair for a couple of hours. They tried to get her out of bed by herself, but the wound in her back was too painful. Transferring to the chair exhausted her, but while out of bed she was making circling motions with both feet and kicking her calves out with both feet. Movements are still small, but are getting incrementally better. The only one left as poor or non-existent is lifting the thigh on the left leg - but we are still hoping. A note
here for "Strictly" fans. Liz has named her right leg Darcy Bussell,
and the left, Russell Grant. She still hasn't moved up to the myeloma ward yet, it may be today, and in Liz's state any change of circumstances carries an element of fear. My worry is the greatly reduced visiting times - we're both happier when I am there holding her hand. Lets hope for another uneventful day. |
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Another relatively uneventful day, although Liz wasn't too good yesterday. Nothing serious, but she was sleepy and felt sick for a lot of the day. I have rather lost track of all her medications, but I think it may have been one of them. Whatever caused it, it meant she was feeling too poorly for the physios to get her out of bed yesterday, and I am anxious for the physios to get started. She has now been officially taken over by the myeloma team - medically, she is theirs, a patient on their ward. However, physically, she is still in the step down unit, and that might be causing a bit of a problem - the step down doctors no longer see her and so on. I didn't quite get all of it but while it might appear to be a bit of bureaucratic nonsense, I think it is more to do with who is responsible for Liz's care. Things work best when only one person or team is in charge. Whatever that was all about, it was resolved late last night when Liz was moved to the myeloma ward. Because there are still some infection checks to be completed she is currently in a side room, on her own, separated from the rest of the ward. It felt quite lonely and cut off when we went in there last night, and Liz is still worried about her nightmares, so, despite all my efforts to reassure her, she was a little frightened when I left her around 9. She was also quite tired, (which was why I left) so I hope she had a good night. She is now in the right place to get on with her treatment, and I hope to find out more today. The main worry from our point of view is the official visiting hours - 2-4 and 6-8 - much reduced and I know how much Liz likes me to be there. Fingers crossed. |
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Liz didn't have a good night on Thursday night. As I thought, she was lonely, cut off, and worried. The nurses reported a couple of anxiety attacks which they managed to calm down, but she was very happy to see me when I blagged my way in outside visiting hours yesterday morning. The doctors are pleased with her progress, and are planning to start the myeloma treatment on Monday, which will be good. As she can have all the treatment as an out-patient, the only thing keeping her in now is the mobility, and the physios came round yesterday. They tried to get her out of bed by herself, but the pain in her breastbone prevented it again. Unfortunately, the plan is to tackle the nodules on her ribs with radio therapy, and that wont start for another 10 to 12 days so I think they are planning to use the hoist to get her out. Once out, another range of exercises becomes possible, and they can see if she can stand. Still lots to do, but things are moving in the right direction. One of the physios, and young woman from northern Ireland, commented on the curious names Liz had picked for her legs (Darcy Bussell for the right, and Russell Grant for the left) and it turns out that not only has she never seen Strictly (and who can blame her for that) but she has never heard of Darcy Bussell. Well, the names would seem strange wouldn't they? When I left last night Liz was still a little anxious about being alone again, so she promised to phone me if she needed to, and, as I didn't have any phone calls, I am hoping she passed the night quietly. We are both finding the restricted visiting a bit onerous. |
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Yesterday started very well, Liz seemed brighter when I got there in the afternoon and her legs seemed to be moving better. She still has considerable difficulty when they turn her onto her side to change the sheet or change the dressing on her wound, and while I was there in the afternoon they did both of these. It was sufficiently difficult that they had to do the two jobs separately, but Liz got through it. The evening visit started well, and both legs were showing a little more movement and Russell Grant (the left leg) has even started to show the one missing movement - raising the thigh - which is excellent news. However, just before I left Liz announced that she felt "twitchy" and fairly soon afterwards her legs and arms started to twitch and thrash about. It was quite distressing for her and she started to get panicky. Which was the cause and which the effect, or indeed, if they were unrelated I couldn't tell, but the panic and the twitching were very difficult. The nurses were very good trying to calm her down, administering diazepam fairly rapidly, and shortly after that a small dose of liquid morphine. The panic and twitching continued however, and she started saying she couldn't breathe, so they were checking her pulse and blood oxygen regularly. Her pulse was, understandably, fairly rapid and her blood oxygen a bit low, but not low enough to worry about, so although she felt she couldn't breathe, plenty of oxygen was getting through. Eventually, they put an oxygen mask on her and she said that it made breathing easier. At this point she started to calm down, but whether it was the diazepam, the morphine, the oxygen or all three I don't know. She finally seemed calm by about 9:15, nearly an hour and a half after it all started and I left her to sleep. Apparently this isn't the first time it has happened, and certainly the nurses have told me of panic attacks in the last couple of days (see yesterday's entry), but no mention has been made of Liz's thrashing limbs, which Liz insists were present. She had been exercising her legs quite a lot prior to this, and I wonder if the two things are related? I will do my best to make sure the doctors are aware of this, but it's not easy when I can only visit 2-4 and 6-8. Let's hope she has a quieter day. |
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It wasn't easy to see what sort of a day Liz had yesterday. When I got there at 2:00 she looked a bit doped up and I later discovered that she had had some morphine at around 1:00. This meant that she wasn't too sure of things. It appears that she reported the previous evening's twitchings, but the doctor wasn't too concerned about them. If that is correct then that is one worry less - I will be trying to see (or at least communicate with) a doctor today. She also reported that the nurses had hoisted her out of bed, and she had sat in her chair for a couple of hours. She has been in bed for a very long time and the change of position can only do her good. She was back in bed by the time I got there. She was more compos mentis for the evening visit, and we just sat quietly together for most of the time. As the time for me to leave approached however, she started feeling "twitchy", and her limbs started to jump again. She appeared to be very anxious as she would pick things up and put them down, move things on her table from one place to another, ask irrelevant things for the sake of asking - all things that you do when you are very nervous. Strange. At about 7:30 she requested a diazepam tablet and that seemed to help as she seemed calmer, and the twitches were not as bad as the previous evening. She said she associated it with anxiety over my leaving - which certainly fits with the timing - and as 8:00 approached they certainly got worse. The previous evening I had stayed with her and we sat it out which took some time and a lot of nursing care, so last night I thought that if I just went, it might improve things, so that is what I did. Not easy to do but worth a try. I tried to get the nursing desk at about 10:00 to see how she was, but they were all out on the wards. I can only hope that she was better than Saturday night. 08:10. P.S. Just heard from Liz - she had a fairly quiet night (good), and the twitching did indeed stop when I left last night. Also good - I think? Some men make their wives cry, some make them laugh - I appear to make mine twitch. What to make of that? |
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On Sunday evening, I emailed Liz's myeloma nurse - Christine - who is our contact in the "team", with details of the twitching behaviour, asking that she bring it to the doctors attention. Mid morning yesterday, I got a phone call from her saying that she would see us both at Liz's bedside when I got there for afternoon visiting, and report. It appears that nobody is really bothered by the twitching, and that everyone is very pleased with Liz's progress - particularly the legs. She reassured Liz on several points and assured me that she was happy to act as a conduit to the doctors in this way. She left with both of us feeling happier. Later that visit the physios arrived to prepare Liz to get out of bed, and agreed that Liz should have some pain killer first. They would return in half an hour. Then the nurses came in to tell Liz that she was moving out of her isolation room into a side ward with three other women. She is now much happier in a cooler, lighter room with other people, and a little bit of bustle around. Unfortunately, the move coincided with the physios returning to get her out of bed, so they said they would return later. When they did Liz had her nebuliser on, so they said they would return later. By the time they did - for the third time - it was too late to do little more than slide Liz up the bed and generally make her more comfortable. I think they will try again today. Liz started her chemo yesterday and it is all pills. We were given the schedule and boy is it complicated. If I remember she is taking something like 8 different drugs, some daily, some every Thursday and Monday, some every week, some every 8 days, some with breakfast, some at bedtime (and one drug only comes in pills so small that she has to take 20 at a time) - all on a 28 day cycle to be repeated four plus times. It is going to take a degree in spreadsheets (which, fortunately, I have) to keep on top of it. But we have made a start. At some point in the day - morning rounds I think - the doctors had prescribed Liz an increase in oxygen. Liz's blood oxygen has not been good for several days, and she has complained of inability to breathe properly. To borrow a Clarksonism, they like you to have about 96 oxygens in your blood but Liz has only had about 90 - 91 of late. Not low enough to be dangerous, but too low really, so an increase in her oxygen supply was prescribed. She was to be given 10 oxygens. Just to be clear - these are not the same oxygens as she has in her blood. You can't just add the 10 they were now giving her to the 91 she currently had and get 101. I am sure you understand this. Anyway - Liz was now getting 10 oxygens to her face mask. At one point one of the physios noticed that although the flow meter was showing Liz was getting 10 oxygens, the mask she was wearing was only suitable for up to 8 (where the other two were going I don't know). So Liz got a new mask suitable for 10 oxygens and she immediately noticed the difference. However, when I got back in the evening, she had yet another mask, and she was getting 15 oxygens. Between visits, she had had an x-ray of her chest and it appears that she has some infection, or a collection of stuff, in one of her lungs. This would certainly affect her ability to breathe properly, as would the fact that she slides down the bed and I often find her slid right down, with the bed head raised, just hunching her shoulders over, and her chin pretty much on her chest. You can't breathe properly in this position. Anyway - as a result of her new 15 oxygens, she looked a whole lot better, her other oxygens were up around 95, and last night we had no anxiety as departure time approached, and no sign of any twitching. Oxygen might be the answer. Today they are going to delve deeper into exactly what the problem is with her lungs, and I left her last night on a heavy dose of antibiotic to clear up any possible infection. |
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Yesterday morning, Liz was hoisted out of bed and into her chair. A little later she was hoisted back up and on to a trolley for a scan of her lungs - the results of which I have not yet heard. In the afternoon the physios first gave her some breathing exercises, then later finally got her sitting up on the side of the bed - the first time Liz has been able to manage that. The wound on her back gave her quite a bit of pain as they were doing it, and I hope that will get easier as the wound heals. But - she had her feet on the floor, and her slippers on the for the first time - progress. Later on, the spinal surgeon, Mr Bommireddy, came along to check her out and gave her 4.5 / 5 for her legs (the missing half mark is presumably down to Russell Grant) - nevertheless, an excellent result. He also said that the stitches can come out on Friday - again , progress. When I arrived in the evening Liz was receiving 12 litres / hour (l/h) of oxygen, down on the previous night's 15, but still a fair bit and she seemed happy. However, despite my protestations that we had been there before, one of the nurses turned it down to 10 l/h. Within half an hour Liz reported feeling anxious, and her legs started to twitch again. Again I asked for more oxygen, and was told that her saturation level (the "other oxygens") were OK, even though they hadn't actually measured it. Eventually, I persuaded her to measure Liz's blood oxygen and, lo and behold, it was down to 92. Finally, the oxygen went back up to 12 l/h and within minutes Liz reported feeling calmer, and 10 -15 minutes later the twitching had all but stopped. I will report this via my new conduit to the doctors, and keep and eye on her oxygen levels. |
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Not a lot to report from yesterday. Liz was a little tired, but did extremely well with the physios. They had a half hour session with her and as they helped her to sit up, Liz had almost no pain from her back - something that was causing her to cry out two days ago - so things are moving along there. They sat her on the edge of the bed and got her to move her feet, point her toes and generally move her legs around and there is definitely strength returning. Russell Grant still lags Darcy Bussell, and I think it will be some time before she stands up unaided, but she is determined and working hard - something the physios say they don't always get. She is still receiving high levels of oxygen, which is causing some concern. Her lungs obviously aren't working as well as they should be, but the scan two days ago established that the problem is not a blood clot. She is also on fairly high levels of antibiotic so I think the assumption must be that it is an infection. We will see. That's about it for yesterday. Small steps in the right direction and no emotional trauma. Just what we both need right now. |
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Again, not a lot to report from yesterday. Liz had a quiet day and was into the third day of her chemo with no ill effects so far. Because of drip lines and nebulisers the physios could never find a window to get her up, and oxygen continues to be the biggest concern. She is still receiving large does of antibiotic and the physio lady gave her some breathing exercises to try to improve her oxygen intake. One of the problems is that coughing is very painful, which isn't helping. However, all in all, not much happened yesterday and I doubt much will happen now until Tuesday, but I will keep you up to date. Once again, thank you all for your cards, emails and good wishes for Liz, and for all the offers of help for me. I continue to manage quite well, ever widening my range of skills, which now include basic washing machine management, and the production of poached egg and tomato on toast for breakfast. (I did look at the intermediate washing machine management course but it included such difficult sounding items as selecting the washing program and something called spin speed, so I decided to leave it for another day.) |
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Another event free day yesterday. As I suspected, the staffing levels on the ward are low over the holiday and everyone is very busy. This means that, as it would take two nurses about 10-15 minutes to get Liz out of bed, and other 10-15 to get her back in, she didn't get out. I don't expect that to change over the weekend. She continues to do her breathing exercises, and I have managed to persuade her to have the plastic box back under her feet. (For the origins of the plastic box, see the entry for 22nd March). I keep finding her well down the bed, folded at the stomach, chin in chest, with everybody wondering why she can't breathe. Last night I got one of the nurses to help me pull her up the bed, and I tucked the box back in at her feet. The hinge in the bed was then aligned with her hip joint instead of in the middle of her back, so when we lifted the bed head, she bent naturally and her chest wasn't compressed. She spent the rest of the evening looking much better and saying how much better it felt. Why she threw the box out a week ago I don't really know, but it's back and I hope it will help the breathing. The stitches in her back came out on Thursday (I discovered yesterday) with no ill effects, and she is realising that it now only takes one nurse to help her to do stuff that it used to take two to do. She is moving forwards, and I have taken to reading this diary from a week ago to her every day to show her how much she is progressing. |
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Big surprise when I went in yesterday - Liz's oxygen supply was down from 15 litres per hour (l/h) to 6 and she was breathing normally. If you read back over the last 5 or 6 days you will see that Liz has had tremendous trouble breathing and has had her oxygen at very high rates. (15l/h is as high as the bedside supply will go, and she was using it at that rate for several days). There are two possible explanations for this dramatic improvement in her breathing. The first is that the enormous amounts of antibiotic that they have been giving her over the last 2 or 3 days has cleared up her lung infection and her lungs are now working more or less normally. The second is that on Friday evening I did two things. Firstly, I persuaded Liz to have her plastic box back to stop her slipping down the bed. Secondly I spent some time learning how to use the Star Ship Enterprise type control panel for the bed, and, because she was now positioned properly in the bed, managed to get her into much more of a sitting position than she has been used to. This allowed her chest to function normally, thus enabling her to breathe properly, thus clearing her lungs. Now, you
can believe which of these explanations you wish, and I know what the
medical profession would have you believe. But I know what I think.
Another small step to recovery again yesterday. Lets hope small steps again today. |
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Liz looked almost back to normal yesterday. She is still breathing with the aid of an oxygen mask, but the oxygen is at the same, low, levels. I am not sure when the mask will come off and leave her to breathe normally, or whether she will go back to nasal oxygen - but I will try to find out. Mentally, she is now bright and alert - something I haven't seen for some time. On Saturday afternoon we started the jumbo crossword in the paper, and it was noticeable that I didn't get a huge amount of help from Liz. We tried again in the evening, but she was tired, and actually went to sleep (that should have told me something shouldn't it?). But last night she was on fire! She was getting as many as me, and some quite difficult ones too - mentally she was right back on form. It was lovely to see. Unfortunately, this also means that she is now champing at the bit to get going, to get some physio, to come home, and that isn't going to be easy. The N.H.S. has it's own pace that can't really be hurried, and Liz's mobility has a long way to go - but we will see. No, yesterday's problems were largely my domestic ones. This cooking business does rather present some conundrums. Such as - I went to the freezer to get out some ready-prepared vegetables for my dinner (Morrison's chill cabinet, "Bistro" range, Petit Pois, Leeks and Pancetta - very appetising) and when I turned the pack over to find out how to cook it from frozen, I was met with the unhelpful information that this was "Not suitable for home freezing". So - those of you devoted to all those T.V. cooking programs - where does one go from there? |
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Liz was again bright and cheery yesterday, albeit still fairly easily worn out. The only real change is that she was put on nasal oxygen in the afternoon at only 2 l/h - a very low rate. Her blood oxygen remained high while I was there, and if it stays that way she will be back to breathing naturally today. That would be another hurdle out of the way. There was also the promise of "intensive" physio this week. That would also be good. Liz is going to ask about a plan to get her back on her feet, (rather than the sporadic visits that she has had so far) and some sort of idea of how long this might take. We have no idea whether it will be one week, two weeks, three weeks or longer. Some pointers would help. The other thing we are going to try is to see if a private physio can come in and help. We both suspect that the answer will be a straight "no", but if you don't ask…….. Not much else yesterday, but I will report back on the oxygen and the physio tomorrow. |
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The physios attacked Liz yesterday with a machine that helps her to stand up. They got her sitting on the side of the bed fairly easily, then they wheeled up a machine on which Liz puts her feet. There is a plastic guard up the front of her shins, a belt round her waist, a platform for her elbows and two handles for her hands. When all this is in position, they lift the top part of the machine and, the way it is all arranged, the body can do nothing else but stand up. Cleverer still, the legs are constrained to take the weight. They can't buckle because of the plastic guard on the shins - it's very ingenious. Anyway - Liz was standing on her own two feet for the first time in nearly 4 weeks. They then asked her to ease her knees back from the shin guard to check the power she had in her legs and, as we expected, Darcy performed better than Russell, but they both work, and they work better than I thought the physios were expecting. She stood there for a couple of minutes, and that really was all she had the strength for, you could see that her leg muscles have wasted significantly in the time she has been in hospital. It is going to be a long haul, but the first step has been taken. It looks as though we will need a stair lift when Liz comes home as, even if she can walk, it will be some time before she can manage coming down stairs. Yes, we could set up a bedroom downstairs, but there is no shower, and Liz will want life to be as normal as possible which means her own bed, her dressing table and so on. So, if anybody out there has any advice on stair lifts I would be grateful to hear it. Finally - when the physios had finished, they persuaded Liz to part with her oxygen. She was quite nervous about it, but admitted it was probably more of a comfort blanket than a necessity, and as I left last night she had been breathing naturally, without oxygen, for about 5 hours. If she got through the night without it another small step will have been taken. |
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Liz did indeed get through the night without her oxygen, and yesterday one of the nurses removed her last canula (the needle thing they stick in the back of your hand to give intravenous stuff with) so she is now free of tubes and needles, and she looks a lot better for it. The physios got her standing again yesterday, but they had modified the standing up machine (see yesterday's entry) so that she had to do a bit more of the standing up by herself. Once on her feet they had her do various exercises including marching on the spot where Liz would lift each foot off the floor alternately. She sailed through all of these exercises to the sound of much laughter and a good deal of encouragement. She really is doing well and we are starting to think in terms of her coming home. No real idea when that will be yet, but it is nice to plan. Yet again - thank you all for all the cards and good wishes. There is no way Liz will be able to reply to them all, so I hope you will take this as a group "Thank You". Finally, thank you all for the advice (of varying degrees of usefulness) regarding my culinary problems (see Monday's entry). Probably the most obvious was "wear your glasses when you go shopping". Useful though this may yet prove, it is not a great deal of help in dealing with a freezer full of food marked "Not suitable for home freezing" ! In the end I performed my own experiment and, having left said peas, leeks and pancetta in the fridge for 24 hours to thaw, cooked them in the prescribed manner, and ate them. Delicious. End of. ! |
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Liz was out of bed and in her chair for nearly 3 hours yesterday morning which is very good as it gives her a change of position. And she wasn't hoisted out, she got up with the help of the physios. In the afternoon, they returned with a zimmer type frame, and having got Liz out of bed with the standing up machine, helped her on to the zimmer where she shuffled several steps forward. Progress indeed. Obviously the physio will continue as quickly as Liz can take it, and they do seem very pleased with her progress, but it is not clear what exactly lies ahead. Medically, I think Liz has been signed off - the team looking after her panceatitus signed her off some time ago, I think the surgical team have signed her off, and as she is now breathing normally and her blood oxygen is normal, I think the people dealing with that have signed her off too. There is talk of her being transferred to continue her physio at Babbington Hospital in Belper - a much smaller affair than the Royal Derby, presumably providing less intense care and costing less - and it is certainly easier for me to visit. But she will be starting daily radio therapy at some point, although nobody seems very clear when, and getting her from Belper to Derby and back daily in her current state of mobility will be a nightmare and (call me cynical if you like) is likely to take up most of the day. Whatever happens, it looks possible that she will be home much more quickly than either of us thought. This would be good, but it is cutting down on the time I have to sort out a stair lift…. Today Liz hopes she will get a proper bath. The first since she went in 4 weeks ago today. Luxury. |
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Not a lot to report from yesterday really, just a little bit further along the same road. Liz got out of bed (with some help) in the morning and sat in her chair for a couple of hours which was plenty. Then in the afternoon the physios got her up on to her zimmer frame and she made a few more shuffling steps across the room. I get quite emotional watching her determination and I think the physios are still surprised that she has gone from basically bedridden to shuffling on a zimmer in a week. Well, less than a week as last Monday was a bank holiday - 4 days. Pretty amazing. As it is now the weekend, I don't expect very much to happen for the next two days, and if that turns out to be the case, I shan't write this diary again until next week. The worrying urgency has gone, and we now have to settle down to a slow, hard slog. More next week. P.S. Liz didn't get her bath yesterday, but she had a shower instead and washed her hair. She loved it. |
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Sunday 15th April. Nothing really to report yesterday. |
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Still not a lot to report. Liz is working hard (what else?) and she does a little more with the physios each day but it will still be some time before she has enough mobility to come home. We are still waiting for details of the radio therapy, but one doctor declared that it would be unsuitable for her to travel from the Babbington in Belper to the Royal Derby every day for several days. I think Liz will stay in the Royal Derby for at least another week - but with the machinations of the N.H.S. who can tell? Meanwhile I am still trying to sort out electric wheelchairs on eBay and a stairlift. Oh dear. I get the feeling that buying a stairlift combines the worst bits of buying double glazing with the worst bits of buying a time share with the odd Arthur Daly thrown in. But the internet to the rescue - there is a lot of information out there if you look hard enough. There clearly is no longer any need to write this daily now, so I will just write it up periodically as and when something develops. |
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Liz's radio therapy program appears to be in hand. The radiotherapy people did a full skeletal survey yesterday - a huge x-ray, or rather, lots and lots of little ones. This enables them to pinpoint exactly where they will do what, and they will shortly tattoo her with the small spots they need to start work. (Liz was there for some time, and with the radio therapy and all the x-rays she has had, by the time she gets home she will probably glow in the dark. With luck she will be even cheaper to run than these awful low energy bulbs we all have to use nowadays.) The plan is that she will have radio therapy every day for the five days of next week, Monday to Friday. Unfortunately, they can't do anything about the breastbone as there are too many vital organs immediately beneath it, so we don't know what will happen there. Once that is done, again, we are not sure. The move to Babbington looks ever more certain, and we are much happier with that since a friend told us that Babbington specialises in intensive rehab work, which is exactly what Liz needs. She still tires quickly, but she is in good spirits, and is her usual cheerful self with the staff. We have had several fairly serious talks and I don't think this is a front, we are both positive about the future and determined to make the most of it. I am doing my best to get the house ready with ramps and stair lift and so on, and we will have Liz home as soon as she is ready. So there we are - we continue to move forwards slowly, and I will post again when there is some more news. |
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Nothing particular to report, but I thought an update might be due. Liz finishes the first round of her chemo today. She has been feeling a bit sick for the last couple of days when they get her out of bed, but the anti-emetic she is now using seems to help, and she sat out for a couple of hours yesterday. The physios got her up too, and she shuffled a metre or so across the ward. A friend who has been a physio for many years and lives locally recommended two specific local people to whom she would turn were she in Liz's position. One of them already works in Babbington Hospital, which is good news, and I spoke to the other last week. She works in your home and offers one hour sessions. When I said that I doubted Liz could stand 15 minutes let alone an hour she suggested that the physios at the hospital were not making the progress that they could be. Getting Liz up and walking at this point is largely a waste of Liz's energy for no great return - she would have Liz lying down doing far more exercises preparing her muscles for getting up, and this Liz could manage for an hour. Interesting. We will see what happens when Liz gets to Babbington. She starts her radiotherapy tomorrow, and that will go on for five days, with the last session next Monday. After that things are a little vague, but apparently someone with the word "outreach" in their title needs to assess Liz to see if she can be moved. (Somehow, I never feel able to trust anyone with the word "outreach" in their title). After that she should move to Babbington and then - who knows. I will post again every three or four days, unless something notable happens. |
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They moved Liz from ward 302 to 303 last night. Someone needed some emergency treatment in the haematology ward (302) and as Liz is only really there now while she undergoes her radiotherapy, they moved her to 303 to make space. This took place at around 7:00 and when she left the 4 bed side room where she had been staying it was quite frightening - leaving behind three people and all the nurses she had come to know, for a trip into the unknown. That might sound a bit melodramatic looking in from the outside, but when that ward has been your world for four weeks it isn't silly at all. I had to leave her with three unknown oncology patients and a whole new lot of nurses when I left, and I felt like I was abandoning her. I phoned later and she seemed OK, but I will find out more this afternoon. Visiting in the new ward is the same in the afternoon (2-4) but later in the evening (6:30 - 8:30) which makes life slightly more difficult for me, but it should only be for a few days (see below). We found out more about her plans, and resolved some of our worries, in a meeting with our contact nurse, Christine, yesterday morning. When the radiotherapy ends (and that might be Monday or Tuesday, depending on whether radiology work on Saturday) she will be moved to Babington Hospital in Belper. She will, however, remain in the care of the haematology department at the Royal Derby. This was very comforting as it means continuing contact with the doctors who know what is happening to her. Her nursing care will pass to the Babington, and so we will probably have to keep a much closer eye on her chemo medication but - I have a spreadsheet…… She took a much longer shuffle round the ward yesterday with the physios, and is clearly making progress, so we have great hopes for getting her home. The stairlift is on order and should be here in three weeks or so, and many other preparations are under way, so we will be ready when the time comes. Can't come soon enough for either of us |
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We had some very good news yesterday. When they were monitoring Liz over the recent years, watching her myeloma slowly start, they watch something called the "lambda light chains" in her blood. Now, I have no idea what these are, so I will refer to them here as "the magic number" as that is something we can all understand. When Liz had her first bone marrow biopsy, back in 2006, her magic number was somewhere in the region of 200 - I believe that the "normal" figure is closer to 20 - so that was when we knew that myeloma was coming. The magic number rose slowly over the years and last year it was 1,000 in July, again in August and again in October. When her blood test came through in January it had gone up to 2,000 and this was when the consultant said that treatment would probably start this year. When Liz was admitted in mid-March it had shot up to 5,000. This is a huge increase over a very short period - a very aggressive and completely unexpected sudden onset. But, because there was nothing that could be done about it while the ensuing pancreatitis was being treated, the myeloma ran unchecked, and at it's worst, by the end of March the magic number was 7,000. As I have said before, the treatment for myeloma is in two parts. The first is the four to six 4 weekly rounds of chemo, which kill off the cancer cells in the bone marrow, and how effectively it is doing this is shown by the magic number. They will start the second part of the treatment - the stem cell transplant - if the magic number can be reduced to about 10% of it's original value - in Liz's case 700. They would prefer to have it reduced below 200, in an ideal situation it would be below 1% (70 in Liz's case), and 20 would be wonderful. (They need to get it down before the stem cell transplant because it is a measure of how much of the myeloma Liz will carry forward across the transplant. This has a direct effect on the length of the remission period - the lower the number, the longer the remission.) They took a blood sample mid-cycle with Liz, and we were told that the magic number had come down to 2,000 but we weren't sure as this seemed a bit unlikely. However, yesterday, one of the myeloma consultants made a special trip to Liz's bedside (on a Saturday) just to bring her the result at the end of her first round of chemo. The magic number was just 1,000. That is an amazing result. She is already in sight of the 10% target and she has at least three more rounds of chemo to go. It is almost too good to be true, so we are still a little disbelieving, but there it is - 1,000 and three more round to do. Please, please, please let it continue. |
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Liz finally made it to Babington at ten to nine last night. What a palaver. She was told yesterday morning at 11 o'clock that she would be given two bags (units?) of blood (or something red anyway, didn't look like wine) which would take about 3 hours, and then she would be whisked off to Babington. By the time I got there at 2:00 they were just about to start the second bag, which would end at about a quarter to four. At around 3:00 the nurse came in to say that "transport" would be there at 3:45 so if the blood wasn't finished she would go anyway. I packed all her belongings and, because "transport" wouldn't take more than one bag, (the one containing all her drugs), took three bags of accumulated "stuff" down to the car. We sat down with a crossword to wait. Four o'clock came and went, and so did the crossword. Five o'clock came and went, and so did pretty much all conversation. Just before six Babington rang to ask where she was, so sister checked with "transport" and they didn't know when it would be. She checked back with Babington to ask "did they have a cut off time after which they couldn't receive her" and received the interesting reply "No, we don't have a cut off time so long as she is here by 9" ! At six I went down to the car and repacked Liz's stuff to leave her an overnight bag in case she didn't go, and left to get something to eat, having missed my lunch break from 4 to 6. At 8:01 I received a text from Liz to say she was on a trolley and on her way. I spoke to her some time later and she was just driving through Duffield looking at fields, houses, cows, cars, shops - all stuff she hasn't been able to see since the end of February. So, she is now ensconced at Babington in Belper, although I don't know any more than that yet, but I will see her later on this morning and find out more. She was definitely up for a few visits just before she left the Royal Derby, and may still be, but we will need to see how much rehab she is getting and how she is managing it before we schedule too many visitors. However if you would like to go on the waiting list, please let me know. Finally, as a post script, can we both (Liz and I) say just how good the care was at the Royal Derby. Yes there was bureaucracy, but that doesn't detract much from the fact that it is a great hospital that is getting many things right. The staff are wonderful, and neither of us would worry unduly about being sent there in the future. |
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Liz is now safely ensconced in Babington, and appears to be doing well on it. Anyone who hasn't seen the account of her journey from Derby to Belper might find this amusing. Despite outward appearances (Babington is an old Victorian building) the ward is light and airy and very uncrowded. The view from the window behind Liz's bed is across the local rugby pitch, and straight up the Chevin (our local hill). She sat and eat her lunch yesterday looking at the view - a pleasant change from the wall that could be seen from the window in her last bed at Derby. When I got there yesterday morning she had to go through registration, with three different people filling in three different forms. When the nurse got to the question about next of kin and asked me what our relationship was I replied "lover". This quite tickled the nurse so, to Liz's chagrin, we are now permanently recorded at Belper as "lovers". How good is that? It must be said that there is a preponderance of older people at Babington. In fact, Liz is probably the youngest there by a 20 year margin, which doesn't bode terribly well for lively conversation in the day room. But let's hope I malign the other patients. The ethos here is very different though. The patients are expected to be out of bed for most of the day. Meals are taken in the dining room and time is spent in the above mentioned day room. Liz, however, still struggles once out of bed. She got up and did an 8 metre walk (with the help of a zimmer) and then sat in her chair for an hour and a half. This was when she had her lunch, but sitting for that long gets uncomfortable and she then becomes anxious to get back to bed. However, the nurses insisted that she got up again later on so she had two sessions yesterday. It is obviously hard work, and it wears her out very quickly, but having walked 8 metres, she will sit down in the chair and mutter "sorry I'm such a wimp". She is a very determined woman. Real rehab starts after the Bank Holiday on Tuesday. A neuro rehab specialist to whom we have been recommended privately also works at Babington and she will see Liz then. Liz will be assessed and, hopefully, a rehab program organised. We will be looking forward to that. |
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Babington started well, with Liz getting out of bed and going into the dining room for her meals. The nurse would get her up and into a wheelchair, then wheel her into the dining room. Seeing this, I suggested that I could bring in Liz's electric wheelchair which would a) give her some practice using it (i.e. let her damage the walls and doors at Babington rather than our walls and doors at home) and b) give Liz a bit of independence. If the weather were to keep up (some hope!) we could go for a walk outside. Liz has been using it for a couple of days and it has certainly helped. The dining room is noisy - a large number of (presumably deaf-ish) people all talking loudly and at once, and two televisions, also loud, showing two different programs. A recipe that could hardly be bettered for wearing Liz out in no time at all. But in her chair she can eat her meal and retire to somewhere quieter. She has also been able to go to the bathroom and wash her hands, another bit of freedom, but she confessed to getting herself stuck the first time she tried it. The nurses and others continue to be very nice, it is much smaller and more cosy, but they are more set up for rehab than for medical conditions and unfortunately, Liz has now developed a chest infection. Infections are the big worry with her chemo as her immune system is slightly compromised and she is vulnerable. Worse, it started on the Friday night of a Bank Holiday weekend - never a good time to start anything, be it a chest infection or plumbing. There is no resident doctor at the weekends so they had to ring the on-call service. It appears that they already had a doctor in the hospital looking at another patient, but the time was currently 3:45 and at 4:00 he went on to overtime, which they wouldn't pay. So he couldn't see Liz and they had to call out a second doctor. I suppose it makes sense to someone somewhere. The last that I heard was that a doctor was coming out at some point last night, and I got a text from Liz this morning (although I don't yet know when she sent it) saying that she was now on antibiotics. We have established that they can provide intravenous antibiotics at Babington, but apparently not all the nurses can put a cannula in, so there is the possibility that Liz will be put in an ambulance and sent back to Derby Royal just to have a cannula inserted. I understand that there is not much call for cannulas in a rehab ward, but I suppose, again, that sending Liz all the way to Derby and back makes sense to somebody. The more relaxed visiting regime is a great deal better, but we haven't yet sorted out how to use it. I tend to get there for 11:00 each morning with the paper then come home again when they all go to lunch. I think we have decided that either I will then make a quick visit at some point in the afternoon, and another in the evening, or, I will have a longer visit in the afternoon and have the evening off. We will see. If you are planning on visiting Liz, you should know that, generally, she is better in the afternoon than the evening. She can manage either, but if you come in the evening it is likely to prove a shorter visit than an afternoon one. So - we are looking forward to tomorrow when, assuming Liz is up to it, she will have her rehab assessment. We may find out a little more. |
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Bad news yesterday. Liz developed a slight cough on Saturday and she needed to see a doctor, but unfortunately, Babington don't have a doctor on the staff over the weekends, so they use a call-out service (see yesterday's entry). The doctor put Liz on antibiotics, but over Sunday and yesterday she got worse, and last night at about 18:00 her temperature reached 38 degrees. Because of her vulnerability to infection, we had been told that this was the trigger point to get her to a major hospital, so the nurse in charge got through to the haematology department at the Royal Derby and the on-call consultant said he wanted Liz back in. So at about 22:00 last night Liz was again in an ambulance but heading back to the Royal Derby where she was admitted to the Medical Assessment Unit. I stayed with her until just after midnight when I had to leave, (having been awake since about 3:30 that morning) and at that point she had been through all the various tests and measurements but hadn't seen a doctor. There was a text waiting for me when I switched my phone on this morning saying that a doctor saw her at 02:40 (just as well I didn't wait!) and they are now treating her for pneumonia. I don't know any more than this at the moment, but I hope to find out more later today. I will keep this diary up to date. Such a shame as she was actually getting on very well at Babington. I was with her at lunch time yesterday when she got herself out of the bed, onto her zimmer thingey, across the ward, into the electric wheelchair that I took in for her, and whizzed off up the ward for lunch - all with no help at all. It was fantastic to watch, and hopefully she won't go backwards while they are treating her in Derby. |
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Liz spent the whole of yesterday in the Medical Assessment Unit (MAU). It is a madhouse - 70% of all admissions to the Royal Derby go through MAU. Patients are assessed and then sent on to the appropriate place, which means a very high turnover. A madhouse, but - 24/7 visiting, and Liz did have a quietish corner. However, I got a text from her early this morning to say that overnight she was moved back to ward 303 - oncology, the ward she left to go to Belper. Ward 302 - haematology - would have been better but she is now on a much quieter ward and the nurses are all aware of the complexities of chemo drug treatments. Visiting is back to 2-4 and 6:30-8:30 though. She has been on intravenous antibiotics as we thought, and her temperature came down slowly during yesterday. The myeloma doctor didn't visit until late yesterday afternoon but the consultants were aware she was there and approving her treatment. It seems that Liz's condition is not as bad as we thought. I had a phone call from the myeloma nurse late yesterday afternoon after a couple of panicky messages from me, and she said that the indicators in Liz's "bloods" were not too serious, which suggests that we did the right things. A temperature of 38 is the trigger point at which we were told to get Liz to a major hospital and we did this. After three successive broken nights - the first being examined by the doctor in Belper, then the next night transferred to Derby late at night, another doctor at some unearthly hour, plus x-rays at 04:00 - and finally last night being moved up to the ward at 04:30 - I suspect she will need some peace and quiet. Unfortunately, Vicki has chosen today to visit with the twins. Oh well I am quite sure she would rather see them than miss them, exhausting or not. We have done all we can - I have bought a 1 month season ticket for the car park at Derby and if that isn't guaranteed to get Liz out in a week I don't know what is - so let's hope she is back in Belper soon. |
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Liz is now in a quiet two bed side room which she shares with another woman. It is a great deal more peaceful than MAU and she has a view from the window of trees and the roof of the Aldi store across the road. Not as nice as the view of the Chevin from Babington, but better than a blank wall. The antibiotics continue, but her temperature went up a little yesterday and she looked tired, but after three successive broken nights that's perhaps not surprising. I hope she had a good night last night. Vicki arrived with the hurricane that is two three year old granddaughters. They told us about their recent trip to France, how to order croissants in French, how to say "thank you", and then they sang Liz a couple of songs, which cheered her up. Liz read them a story, and that was about all she had the energy for. She hasn't seen the girls since before Christmas (I think), so it was good that they could visit her. Seeing Liz cope with the girls, and visiting more quietly in the evening, it was obvious that Liz is not ready for visitors at the moment. As she recovers she will no doubt welcome guests, but it is probably too much just now. Some good news though - the physios (the same ones she was working with before) got her out of bed yesterday and, remarking on how much progress she has made, suggested that there might not be any need to head off to Babington when she is better - she might come straight home. WHOOAAA. Lovely though that will be I am just not ready. The stairlift appears no closer to being installed (thank you Companion Stairlifts) and without it bathroom facilities are difficult on the ground floor. I am sure we will manage, but I guess we have a week, or maybe a little less, to get ready. |
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Busy day yesterday and I didn't get to see too much of Liz. The stairlift people have decided that they can't take the lift up to Liz's office. It's an elf'n'safety issue - Liz might bang her head. Aarrgghh! We live in an old house with low bits - we all bang our heads, but they weren't shifting. So - do we accept that the lift will only go from the ground floor to the main bedroom floor (i.e. spend a whole load of money on a lift that isn't what we want), or do we start again looking for another lift? A difficult decision made for us in the end by the physio - she said that a short flight of stairs (it's only 5 steps) would be a good place for Liz to start stairs again, and an incentive to do so. So I cut short the afternoon visit to rush home, study the spec for the lift, make a phone call, and I hope I have finally ordered a stair lift that will arrive in "two to three weeks". Because the man delivering this elf'n'safety verdict couldn't get here until 1:30 I was late going in to see Liz but she looked a whole lot better. And she is a whole lot more mobile - her mobility is increasing in leaps and bounds (good description that!). She got herself out of bed and into the shower yesterday morning, and she is now using an ordinary zimmer frame rather than the one with additional arm rests. It really does look as if, barring mishaps (and we have had a few of those), she might be coming home early next week. I can get a bed in the dining room, and the Occupational Health lady went through all the bits and pieces that we can borrow, things which will allow Liz to use a normal toilet and so on, but we can't get round the fact that all our bathroom facilities are on the first floor. Vicki suggested that when she and the girls were in France she just put them in the kitchen sink, but I looked at Liz and then I looked at the sink and I don't think that's going to work. So, today I take my car in to load up a veritable mountain of additional equipment, I hope (with a little help from Tim) to get a bed into the front room, I shall start nagging to get the wheelchair ramps in place - and lets hope we see Liz at home in a few days time. My monthly car park ticket just might be working it's magic. |
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Liz was given a good TWOCing last night (TWOC = Try WithOut Catheter) and, without going into unnecessary detail, it worked - she is now without a catheter and one of the doctors said yesterday that if the TWOC was successful, she could come home TODAY! The nurses, however, believe doctors live on another planet and today is unlikely. So - good and bad. Bad also that I am STILL no closer to getting an install date from Companion Stairlifts. My contact there wouldn't talk to me last night but "passed a note" to say 3 to 4 weeks. My feeling is that by then Liz may well be managing stairs anyway. What a decision. Should we spend several thousand pounds on a stairlift that might be redundant before it's even installed? Any suggestions? Also on the plus side, I have been inundated with equipment from the hospital. A zimmer, a toilet adapter to help Liz to stand back up, a commode, a special chair, soft cushions - and, on eBay, I am watching one of those electric armchair thingeys that stand you up (we call them boingey chairs as Tago and I reckon we could adapt it to catapult Liz up the stairs with or without a lift). I have moved a single bed into the dining room and that will become Liz's bedroom. I also hope to get her PCs down there so she can join the real world again, and I had thought of running a hot water supply outside so we could give Liz a warm hose down now and then as she can't get upstairs to the shower. However, that has been made redundant by some kind neighbours who have a downstairs walk-in shower. They have said Liz can use it once or twice a week with no problems, and as there is a new baby involved as well, the attractions will no doubt prove irresistible. So it's all a bit of a panic, but we are both looking forward to a bit of quiet time with just the two of us. After 10 weeks of stress and separation that will do us both just fine. |
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Liz didn't get home yesterday. She was being sick in the morning, probably down to the antibiotics according to the doctor, and they wouldn't discharge her until that stopped. Later that day, a blood test showed a magnesium shortage so she has also had an overnight drip for that, so today might be the day. This is how we live at the moment - today might be the day. Liz has reached the point where hospital is her refuge, and leaving is a bit frightening. I can understand this, particularly in the light of her "away weekend" to Babington. However, it does have to be dealt with so today I shall take her wheelchair in (the old push-you-along one) and get her out of bed and up to the fifth floor restaurant for a cup of tea. Liz says that even the thought of that is quite frightening, so it will need some care. So that's it really. Nothing happened yesterday, today we go for a cup of tea. Life on the edge. |
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She's home. I got her home at about 5:30 last night after a long wait for the last few packets of pills. It was a beautiful drive home through green fields and trees in the late afternoon sunshine . It should have been a real joy, but Liz is quite frightened about leaving the safety of the hospital, so we are having to take this gently. When we got home, there was a lot of rushing about (on my part) and lying down (on Liz's part) as we got things a bit sorted out. Where the pills were going to go, where the chairs, zimmer etc were going to go. Preparing something to eat, learning to use the electric wheelchair. We eventually watched Jack Dee on the tele for half and hour and went to bed, both of us exhausted, about 10. The electric wheelchair that I had designated for downstairs use is, as I suspected, a bit difficult but the "upstairs" one (which is now downstairs) is brilliant. It is an old Stannah powerchair and it looks terrible, but it is beautifully easy to control and makes navigating doorways a doddle. It was a real bargain on eBay, and is getting a good deal of use. Liz is resting a good deal and as she is still asleep I haven't yet had a report on the bed. We may need to get a different mattress down from upstairs. We haven't yet found her a comfortable chair to sit in and I didn't win the auction for a boingey chair (rise and recline armchair - see Saturday 12th May) on ebay last night so we need to think again. We have been offered the loan of one that looks promising and I will chase other chairs on eBay. There are a lot of details we have to sort out. Despite all that, she's home, and that's a whole lot better than being in hospital. Visiting is not very likely at the moment as we are still sorting ourselves out, and Liz tires far more easily than either of us realised, so please bear with us. |
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Finally 10 minutes to update the diary. Liz is doing well, doing a little bit more every day and working very hard. She is confined to downstairs owing to the absence of a stairlift, but we are hoping that in three to four weeks time she may be able to manage stairs. In the meantime she whizzes about in her electric wheelchair getting from the dining room (bedroom) to and from the kitchen and toilet. Not ideal, but it is working. When I say "Liz whizzes about" I may give a false impression of the energy levels involved here. It is of course the chair that whizzes about, all Liz actually does is move the little lever a bit. And generally having done that, she will go to sleep for half an hour. The whizzing to sleeping ratio is actually very low indeed. Life is much slower than of late, and things take much longer to do, so I don't seem to get much done during the day - hence the need to steal 10 minutes to do this. Difficult to say where all the time goes, but go it certainly does. We made the expedition next door to our neighbours with the downstairs shower this morning, and it was quite an expedition. It took about an hour, but Liz said it was well worth the effort, then came home and went straight to sleep for another hour. At the same time as all this my culinary expertise is increasing, although not at the same rate as Liz's mobility. I always did make a pretty good bolognese sauce, and my poached egg and tomato on toast is, of course, legendary, but to this I have added both jelly and blancmange. So, should you ever be in need of a three course meal with poached egg and tomato on toast for a starter, spaghetti bolognese as a main course, and jelly and blancmange for dessert I am undoubtedly your man. Further yet, I have used my expertise on eBay to acquire a good old fashioned rabbit shaped jelly mould, and the granddaughters will be among the first to appreciate it on Friday when they pop in. So, slow improvements all round, but wonderful to be just the two of us for a bit. No doubt we will start admitting visitors once we have got used to each other again, and the whiz to sleep ratio increases. |
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It is much more difficult to find 10 minutes to write this now that Liz is at home. It's not that Liz is demanding so much as there is just so much stuff to do. So I am sorry about the long delays between reports but I am doing my best here. Liz is making huge strides (metaphorical strides that is - her actual strides are still quite short, unless you take the northern meaning of strides, in which case she isn't taking them at all as they're for men anyway. Enough!) Yes - Liz is improving rapidly. A physio (private, specialising in neuro-physio) came on Thursday to asses Liz and concluded that she is doing very well, but that she has three problem areas. Firstly, the musculature is wasted. We knew about this, and it is eminently repairable - it will take hard work on Liz's part but there is no reason why the muscles should come back with time. Secondly, unexpectedly, balance. Liz's stomach muscles have wasted along with all the others and she now has a tendency to lean backwards which causes her to overbalance. This is, again, eminently curable with time. Finally, confidence. Liz has been hugely unconfident since she left the shelter of the hospital and every new thing is frightening. This is again curable, but is very hard work for Liz and this is the one that tends to slow down progress. As expected though she is fighting it and we are doing new things. All this is very good news as it means there is no reason why Liz should get back to her normal level of mobility. The spinal surgery may leave her with a slight stoop, but we hope to find out more about that when we see the surgeon again in June. As part of her advance we have twice been out in the last few days to friends who have ground floor showers. Both were a bit of an experience. To get Liz a shower is great, but getting her up and down a couple of steep steps (in one case) and into a smallish shower stall (in the other) presented problems that exhausted her. In both cases though, Liz reckoned that the pain was worth the gain so we will probably do it again. I am, however, hopeful that our stairs will shortly prove surmountable and that she will be able to use our new shower which is particularly well suited to her needs - walk in, plenty of space for a stool, and no additional steps. I hope to be getting banisters fitted to the stairs this week, and who knows when Liz might be able to use them. She only has to make one trip up and one trip down a day, and the physio said that coming down on her bum is as good a way as any to start. Something to work towards. Finally, she is sleeping a great deal, and eating like a small horse, both of which I take as good signs. (Liz doesn't like me to say that she is eating like a horse, so I have compromised here with "small horse" - I hope you appreciate the delicacy.) |
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Nothing spectacular to report, but Liz continues to improve day by day. We had to go to Belper for her monthly blood test today and that went really well - she was quite happy. On the way back we spotted a rather nice beer garden at the Bluebell and resolved to pop back at lunch time and sit in the sun with a beer. In the event the next door neighbour popped in with the new baby and that was the end of the lunch time drink. Liz has been sitting outside in this lovely weather and this afternoon took her first steps totally unaided - no zimmer, no stick, no held hand, nothing. It wasn't a great distance (from her lounger to the wheelchair in the picture), but it was a big step forward for Liz. She still tires incredibly easily though and visitors can still be a problem, so still strictly by appointment only please. So, here she is (below) - outside, working hard on her mobility, and enjoying the sunshine. |
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Bad news - Liz is back in hospital. Again. She went for a routine blood test on Wednesday morning, and at about 9 o'clock that evening we got a phone call from the out-of-hours service saying that she was anaemic. She must have been in a pretty bad state to trigger them ringing us, and the doctor at the other end said that, had Liz lived alone, she would have advised calling an ambulance and getting to hospital immediately. As it was, Liz didn't live alone, and was exhibiting no symptoms so we were told it was OK to wait until Thursday morning. Thursday morning we duly turned up the Medical Assessment Unit (AKA the Madhouse) where Liz was admitted. She was, as usual, prodded and poked and blood was taken. The doctor doing most of the prodding and poking said the she detected a little tenderness in the belly so x-rays and ultrasound scans were called for. During Thursday night Liz was transferred from the Madhouse back to ward 302, which now feels more like home than the farm! She had 3 units of blood (which is a lot if my understanding is correct) and actually looked a great deal better when I saw her on Friday afternoon. She had a bit of colour back in her cheeks and this made us wonder how long this has been going on - I have been saying that her complexion was a bit sallow looking for some time now. So I went in yesterday afternoon expecting to take her home only to be told that she now has a little blood in her urine, and so will be kept in until that is resolved. Poor Liz - it really is just one thing after another - I just don't know where she finds the strength to cope with it. We hope that this latest setback is something as simple as a bladder infection, in which case she should be out shortly, but I am now afraid to get my hopes up - there always seems to be something else. Keep your fingers crossed for her. |
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She's back home again. Liz was discharged as fit and well on Saturday afternoon, and we spent the afternoon sitting in the garden with tea and crumpets with the occasional shandy thrown in. So lets go back to that lovely photo of Liz working hard on her mobility. |
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Two lots of good news. First up was Monday when the physio returned for her second visit. Liz has been doing very well and we wanted to know if she (Liz) was capable of getting up the stairs - not necessarily walking up them as normal, but just getting up them. This would give her access to her bedroom, her dressing table, and her clothes. Access to her clothes - ah - how I hate being sent upstairs for "a blue striped short sleeved tee shirt", finding one, and bringing it down only to be told a) not that one, b) that's not blue (yes it is!), c) ah, yes, that wasn't the one I meant - etc., etc., etc. So access to her wardrobe would be a great bonus for me, but the great bonus for Liz would be the walk in shower. By mid afternoon on Monday Liz had indeed been upstairs and down again. On her bottom to be sure, exhausting certainly, and no one would describe either ascent or descent as elegant, but nevertheless access to bathroom and wardrobe could be achieved. She spent Monday night in her own bed, and yesterday morning showered and dressed as normal. A great step forward. Later on, we went to the myeloma clinic at the end of her second round of chemo to see how she had got on. (See Liz's Magic Numbers). I was a bit concerned because mid-cycle she had pneumonia and had to come off the chemo for a few days and I thought that might affect things. Indeed it might have, but the numbers are down again. Not so spectacular as last month's drop from 6,800 to 1,000, but she is now down to 690. Remember, a stem cell transplant is deemed viable if the numbers drop to 10% of the original value - in Liz's case 680. So we were very happy with that. She will continue the chemo for another two rounds, as they always do a minimum of four rounds, and lets hope the numbers keep dropping. All in all a very good couple of days. |
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A long time with no report, mainly because there is nothing major to report. Liz continues to get more and more mobile a bit at a time. She can now walk short distances unaided, but, for example, walking from her chair in our front room (with the bay window) to a sofa in the sun room is really more than she can manage comfortably. She can get up and down stairs on her own to feet - the days of bottoming her way up and down are gone. Again, it is a slow process and I am none too happy about her trying it without me there to catch or support her, but she is going up and down stairs on her own two feet. She is helping with the Sunday night dinner - the big meal of the week in our house, the full roast and six veg. She can prepare the vegetables, and get the joint in the oven, but about then the energy runs out and it's over to me. But - we are getting our special Sunday night dinner again. All it needs is Top Gear to watch while we are eating it and Sunday would be complete. Visitors are welcome, but in small amounts as Liz gets worn out very quickly. We have seen a few friends - sister Mary sent a text asking if she could "come up and make dinner", and any sentance containing that particular sequence of words is music to my ears, so Mary and Jon came up and made dinner for us one night. So nothing major to report, but life is slowly getting back to some semblance of normality. |
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I haven't posted anything here recently because there hasn't really been anything to report. Liz makes slow but steady progress and now uses neither her electric wheelchair, nor her walking frames. She gets up and down stairs by herself, gets herself up in the morning, but still needs the wheelchair if we go out and she has to walk more than a few tens of yards. Nevertheless, solid progress. Today was clinic day, and we had the new results for her magic number. The dramatic drop at the end of the first round of chemo has eased off and this month the number has only dropped from 690 to 678. It would have been nicer to see a larger drop but there is still one more four week session to go through, even though it looks as if the number has now reached a plateau and 660/680 is as far as it will go The consultant professed himself pleased, and, as Liz is now below the target of 90% of her original count (6,800) she can move to the next stage of the process - the stem cell transplant. She has been almost permanently nauseous for the last 10 or 11 days, which is unpleasant, and there was some concern about that at the clinic this morning. She has been given an alternative anti-emetic to try, and they have suggested that she defers the start of the next round of chemo by a week to give it time to work. Lets hope it does. I will report here again if anything changes, but things seem to have steadied off. If the nausea eases, Liz will be more ready to receive visitors, but you don't really want to see people when you feel permanently sick.
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It looks as if we may have found the answer to Liz's nausea problem. (See last Tuesday's entry). Part of her chemo program is a regular anti-emetic - three or four times a day as needed - but despite this, two or three times a week she would retch painfully or vomit. She also takes another, rather stronger anti emetic as part of the treatment, but only twice a month with one of the other drugs. Because of the retching problem, the consultant suggested that she start taking this, stronger, anti emetic on a daily basis and when we started to think about it, it seemed that the permanent nausea started with the regular doses of this drug. So, on Thursday she stopped taking the stronger drug while maintaining the daily doses of the other one, and has been feeling much better ever since. She has gone back to occasional retching, but, unpleasant though this is, it isn't as bad as she was. |
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Again, I haven't been reporting because there is little to report. Liz has started what we think will be her last round of chemo, and when it came to the day when she had to take the anti-sickness pill that was making her poorly last round, she threw it straight up again. Liz's body clearly will no longer tolerate that particular drug. It is fortunate that it is only an anti-sickness pill. She also had a few days when she was absolutely devoid of any energy at all. Literally, all she could do was to lie on the sofa all day and that may have been associated with a large dose of steroids she was taking at the time, but it's all guesswork really. We just have to take each day as it comes. Other than that, life goes on quietly. Liz has an appointment at the end of the month to see the team in Nottingham who will be doing the stem cell transplant, so we should know a bit more about that, and the timing, in a couple of weeks. That feels a bit daunting at the moment, but I hope that the appointment will settle some of the doubts surrounding it all. I will write some more when we have more details after the visit to Nottingham. |
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Big visit to Nottingham yesterday to see what the future holds. A bit nerve racking, but we now have a much clearer idea of what we can expect over the next weeks and months. The timetable, if all goes to current plan, is detailed here. |
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Liz went back into hospital yesterday. She had a blood test on Tuesday which showed her to be very anaemic, but not anaemic enough to rush in for an immediate blood transfusion. It left her very weak, but she had no other symptoms, like breathlessness for instance, so the hospital decided to leave it. Then on Friday, she felt worse so a blood transfusion was arranged for Monday, but on Friday night she started feeling a tightness in her chest so yesterday morning (on instruction) in to A&E we went. After a barrage of tests and more x-rays she was put on an antibiotic drip, then a saline drip and at about 1:30 in the afternoon she was admitted to ward 301, where she is now. Assuming there is nothing else wrong, she should be in there for about 48 hours while they check her over and make sure all is well. She will probably get the required blood, and is definitely getting loads of saline (neither of us is very sure why, but the nurse says it is because of her low white cell count). So – there she is. Hopefully she will be out on Monday, but in the meantime I am NOT COOKING! The Bluebell has taken that task over for a couple of days, and jolly grateful I am too. |
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Liz is still in hospital. They have kept her in for a number of reasons and one of them gave us a real fright. On Monday morning at about 11 o'clock I got a text from Liz saying that a doctor had just examined her, that they suspected another spinal compression, and she was going for an emergency MRI at 4 o'clock. Absolute nightmare. If there was a second compression, then there could be a third and a fourth. Where might it end? More spinal surgery – what would the effects be? What would Liz's life be? We were both terrified. Unfortunately we were terrified separately as I couldn't get in to see her until visiting at 2:00, which made it worse. When I did get to see her we were comforting each other with no great success when Christine, the myeloma nurse arrived. She said that a second compression would be very unusual because it would imply further calcium loss from the spine, and this hadn't been happening as they had been monitoring her blood levels for the last six months. This brought us a good deal of comfort. Any doctor could have told us this, but only Christine was thoughtful enough to have done so. She also said that the MRI report would normally take up to 24 hours to get back, unless something was seriously wrong, in which case it would be phoned through quickly. This meant that, if we had heard nothing by the time I left after evening visiting, all was probably well. At four o'clock, visiting ended and Liz went off for the scan. At 6:30 I was back and it was a bit tense. At 7 o'clock a doctor appeared and I feared the worst, but she had made a special trip to tell us that the scan was all clear – no compression. It is difficult to describe the relief. This has been such an emotional roller coaster and each down seems to make the ups take longer to realise. It didn't really get over it for 24 hours, but the relief was certainly enormous – the other difficulties with blood levels and so on really seemed very trivial at that point. So – Liz has had all her scheduled treatments for this week and I sit here, hopeful that she will be home this afternoon. Her stem cell transplant treatment starts next week. |
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Liz finally came home on Thursday afternoon. She was kept in until she was over a mild chest infection and her white cell count was not quite on the floor. We were very happy to have her home, and celebrated with a cup of tea and a slice of cake. Unfortunately, within a couple of hours Liz had brought it all back up again, and she was sick again that night. And again in the morning – about every hour. At about 1 o'clock I phoned her emergency number and we whisked her back off to the Royal Derby where she had blood taken, and was given a fluid drip (dehydration is always the big worry with constant vomiting). We were there most of Friday afternoon. A doctor saw her and said the symptoms were about right for them to be caused by the slice of cake coming from the freezer – any bacteria on it would have been aided by a few minutes in the microwave defrosting. She had stopped vomiting by this point and all was well. My worry with that diagnosis was that she had started vomiting within hours of getting home, had vomited minutes before we left for the hospital, but had not vomited since – it all seemed too much like a coincidence. The big question was would she start again when we got home. To which the answer was, unfortunately, yes. We got home about 5, and within minutes she had vomited again. She then went off to sleep for a couple of hours, and later we had a bit of dinner with no ill effects. So, this morning, here I sit, not knowing whether she was sick again in the night. If she was then it looks like another weekend in A&E, but here's hoping……. Stop Press. 06:45. I have just chased a flock of sheep off the front lawn – a great way to start a weekend – and Liz has just popped to the loo and announced that she hasn't been sick in the night. Cautious optimism reigns….. |
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We had a bit of a set back yesterday - Liz's "magic numbers" went up in the last month rather than down. This is, apparently, "not unusual" but it means that Liz will have two or three more rounds of (a different) chemo before the stem cell transplant, which has now been postponed. This is a bit disheartening on top of everything else, but the medical team seem confident that she is still on course. The "magic number" is a measure of how much of the myeloma is still in Liz's blood, so the lower the number when the stem cell transplant takes place the better. Obviously we want the number as low as possible, so Liz will now be on the new chemo regime for two or three three week cycles. This chemo drug is an injection, however, so we will be travelling to Derby hospital twice a week for the next few weeks. Unfortunately, Liz continues to be sick quite regularly, and the general medical opinion is that it is nothing to do with the myeloma or it's treatment, but is probably unrelated. It is, however, stopping Liz starting the new treatment straight away - she starts next Tuesday and we really hope that the throwing up will have stopped by then. Today she has a bone marrow biopsy so that the doctors can see exactly the state of her bone marrow. An unpleasant, painful, process so send her your best wishes at about 3:15 this afternoon. P.S. – Late Wednesday. Your best wishes seem to have worked as the biopsy went well, and the doctor who did it was very good – Liz described it as the least painful she'd ever had. And – the new antiemetic seems to be working as Liz wasn't sick yesterday. She perked up considerably, even managing to eat a meal in the evening, something she hasn't done for a few days now. |
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Some good news. Liz went for the first of her new chemo treatments on Tuesday, and we weren't sure what the reaction would be. The district nurse came on Monday (to take a pre-treatment blood sample) and Liz was so poorly that she was still in bed – I had to reassure her that she was unlikely to be the first patient that a district nurse would have seen in her pyjamas. She has been suffering from nausea and a headache for two or three weeks, and for the last 10 days or so has complained of bone ache throughout her whole body. Combine this with no energy, and Liz has not been at all well. This was how she went off to the hospital on Tuesday. It didn't help that she needed to be weighed in order to get the chemo dose right. She should have been weighed on her last visit but she was so busy retching that the nurse didn't do it. This meant that we had to get to the hospital at 12:00 for the weighing, so that the chemo would be ready for her 2:00 appointment. We discussed coming back home between the two but decided that it probably wasn't worth it, so sat in the very nice little internet café on the top floor for a couple of hours. In the event, the pharmacy took until 3:45 to get the chemo out to the nurses, so, even though the treatment itself is a single intra-venous injection and takes only minutes, we didn't get home until 5:00. Poor Liz was shattered. By yesterday morning though she was a transformed woman. No headache to speak of, no bone ache, bags of energy, at least, relatively speaking, and very cheery. It lifted my heart. It's not usual for a chemo patient to feel better after treatment, but that seems to be the case here. The only thing we can see is that Liz's treatment involves large doses of steroids from which she has been withdrawn between her two treatments, and although I can find reference to lack of energy as a symptom of such withdrawal, I can find no reference to the bone pain or the headache. She still seems to be fine this morning, so whatever it is / was we will watch out for it, but for the time being, Liz is a much better. P.S. Saturday 18 th . Talking to the nurse at the hospital yesterday, she says that Liz's problem was probably not steroid withdrawal, but rather that steroids are a fantastic anti-inflammatory and it is that property which has probably cured Liz's aches and pains. |
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I haven't had much to report over the last two weeks as Liz has been on her new chemo regime. There is no doubt, though, that as the end of her first cycle neared and the first set of results became imminent, the stress levels rose. It matters hugely whether the magic number has gone up or down. When the district nurse came to take her blood last Thursday, she took and extra sample for the magic number test and by the weekend the stress levels were almost unbearable with neither of us sleeping very well, and Liz literally making herself sick with the worry. We were expecting the result yesterday when Liz went in for her regular clinic appointment. We desperately needed to know whether the number had gone up or down. The trouble is that when things are this important, and you need a yes or no, black or white answer, you rarely get it and yesterday started out as no exception. Because of the bank holiday, the numbers weren't back from the lab. Huge disappointment. However, the consultant rang the lab while we were there and they said that the results should be out by today (Wednesday), whereupon the consultant took my mobile number and volunteered to call me as soon as he had the result. Is that above and beyond the call of duty or what? The call actually came through yesterday evening and it was fantastic – so good in fact that it is almost unbelievable – Liz's magic number had come down from 1300 to 51. Yes 51 – that's what he said. Because it was a voicemail message I have emailed the nurse asking for confirmation, but his (the consultant) tone of voice suggested that we had heard correctly. Fan-bloody-tastic! |
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Even though the numbers came down enormously at the end of her first round of this new chemo, Liz has to go through a minimum of two rounds before she has the stem cell transplant, and she was due to start the second round last Tuesday (4th). However, for the previous few days she had been complaining about a shortness of breath brought on by a pain in her chest. She has residual pain in her breast bone where the myeloma attacked it, and whenever she asked about chest pain, the doctors tended to write it off to this. But – when we started emphasising the shortness of breath she got a very different response. I think that the chemo treatment she is receiving tends to produce blood clots, and this was the big concern. So, on Tuesday, instead of the chemo she went through a barrage of tests – blood test, ECG, examination by a doctor, x-ray, and (the next day) a CAT scan - checking for blood clots, particularly on the lungs. Nothing. Zip. Two whole days in the hospital, one completely worn out Liz, and not a clue as to why she is breathless. But, the chemo has been deferred. She should have had the second lot on Friday, but that will now be her first, so the course of treatment has just been deferred about three days. We are hoping that today will go without a hitch. It does have one unfortunate knock-on effect though. While she has been having chemo on Tuesdays and Fridays, the district nurse has been coming to take her blood on Mondays and Thursdays. This is so they can calculate the exact dose of chemo required for the next day – it is very convenient and it works well. Now, however, she is having chemo on the Monday, and the nurse can't come on Sunday so we will have to go into the hospital early on the Monday for the blood test. That will then be analysed and the chemo prepared before she can have the injection. With luck we will be able to come home between the two things, but if not there is going to be a lot of hanging about round the hospital. Fingers crossed (again please). P.S. Saturday 8th. The chemo yesterday was indeed pretty straightforward with no delays or alterations. Let's hope we're back on course. |
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Some good news – Liz has started the move to the next step of the treatment. She went in today for her Friday chemo treatment, and we were told that, because her magic numbers were so low at the end of the last round, they have decided to move to stem cell harvesting and then stem cell replacement. So Liz has a busy week ahead of her. On Monday she must have an important blood test, where they measure (as far as I can tell) just about everything it is possible to tell from a blood test. Then on Tuesday, she goes in to have a Hickman line put in. This is a sort of tap into one of the major veins that returns straight to the heart (and is where they will take the blood for the stem cell harvest). This amounts to minor surgery, and she will have a local anaesthetic. She will also have another visit on Wednesday to change the dressing, which will either mean another trip to the hospital, or the distract nurse coming here. As the next step is the one when the hair will quite possibly fall out, Liz is anxious to get her hair cut short before then, so I am busy trying to arrange a sort of flexible appointment with her hairdresser, so we can fit it round an unknown appointment either with the hospital or the distract nurse. The logistics were never going to be easy. Then, on Thursday, she will go into hospital for a few days when she will be given the drugs to start her releasing stem cells into her blood stream. She may be in for a number of days, but however that works out, she will be on some pretty powerful drugs for a week or so. This leads on to the stem cell harvest, which is scheduled to start on Monday 1st October. So, please keep your fingers crossed, and / or pray to your God that it all goes according to plan. |
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Monday was slightly embarrassing. Liz had to go to the hospital for a blood test some time in the morning. I’m not sure what that particular test was for, but it was important. Normally, blood tests take a few days – perhaps up to a week - to turn round, but if it’s important to get the results back quickly, you get a red bag for your paperwork. Liz, being a haematology patient, usually has a red bag and so it was on Monday. We turned up at the blood test clinic around 10:00 to find a queue so long that it overflowed into the corridor. There must have been 50-60 people waiting - take a number and wait for it to be called – it didn’t look too good. Then I spotted a notice that said “If you have a red bag, wait here”. We did so, and within 5 minutes Liz was in, out and done. I had to sit in with all the waiters while Liz jumped the queue, then I had to push her out past everybody. All slightly embarrassing – but not quite embarrassing enough to volunteer to wait our place in queue. Tuesday on the other hand was not the best organised day we have ever experienced at the Royal Derby. We gathered that the sudden change of plan that has set Liz on the route to her stem cell transplant was originated in Nottingham by the man in charge of the whole trial in which Liz is participating. This is (we suspect) partly due to Liz’s amazing response to the new chemo, but also a space being available on the 1st October. This change of plan was dumped on Christine, our contact nurse, at mid-day last Friday but what we didn’t know was that both she and the man in charge at Derby were going on holiday for two weeks (independently as far as we know) that night. As a result, it appears that everything was a bit rushed and there was a failure to cross the “t”s and dot the “i”s to the same high standard that we have come to expect. Because of the rush, there was no time to send us any information, and, as a result Liz was not told that she should be nil by mouth yesterday morning. Fortunately we decided independently that it would be better if she didn’t eat, but she had a cup of that hot, brown tinged liquid that she is pleased to call tea. This caused a bit of a panic. As did the fact that the plans had changed so drastically, when the nurse in charge of the trial at Derby came back from holiday yesterday to find all this on her desk. So while some were chasing round to establish what effect, if any, Liz’s early morning cup of tea would have, others were rushing round trying to sort out why she hadn’t finished her second round of chemo, why certain blood tests hadn’t been done, etc., etc., etc. In particular, why she hadn’t had a bone marrow biopsy – she needed one, and one was to be arranged for 3:30 that afternoon. As a result of this, although we arrived at the hospital at 08:30 in the morning, nothing at all happened until 12:15 when Liz finally went down to have her Hickman line put in. Again, we didn’t know what to expect, and although Liz only had local anaesthetic, she came back very woozy and didn’t text me until about 2:30. Then we had to wait until 3:30 for the bone marrow biopsy but (for reasons which, even this close to the events, I can no longer remember) that was postponed until 4:30. Then at 4:30 we were told that the doctor who was due to do it had been called on an emergency and wasn’t available – it will be done on Thursday. Thursday should have been a simple phone call at 9:00 to the ward to find a suitable admission time, then taking Liz in. It has now evolved to a blood test at 9:00, the said biopsy at 11:00 followed by admission to the ward for her chemo. So yesterday was a long, rather frantic, day. But the good news is that the district nurse who will be coming today to change the dressing on the Hickman line only works mornings, so we have been able to sort Liz out a hair appointment for this afternoon, when she will have it cut very short. Please send her your love and support. |
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What a week this is. On Wednesday, as expected, the district nurse came in and changed Liz's dressing, then in the afternoon, Liz had her hair cut short. We are both rather taken with it, and I will get some photos posted just as soon as I can get me, Liz, and a working camera in the same room at the same time. Thursday, however, did not go exactly as we expected. We got Liz to the hospital around 9:30 for her blood test (there was no queue at all), then a wait until 11 which we filled with coffee and bacon butties in the café on the fifth floor. Very nice. At 11, Liz had her fourth bone marrow biopsy, which was clearly quite painful but she bore it very stoically – I don't know how she does it. She should then have gone onto the haematology ward but the bed wasn't available so we decided that, rather than hang around the hospital for an indeterminate amount of time, we would come home and phone regularly to see when she should come back. The bed was finally available at 5:00, so I took her back in, but 5:00 - 5:30 is meal time and they don't like visitors at meal times, so I left her to it. Then at about 8:30 last night I got a text saying that it was now too late to start the chemo as it is quite aggressive and they want the full panoply of medical services available when she has it, so it will be started this morning. This, unfortunately means that the whole program is now a day late, and we are hoping that Nottingham can cope with this. Heaven knows what will happen if they can't - so, again, please, fingers crossed……. |
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Liz was discharged yesterday, all according to plan, and is now home again. The chemo went by uneventfully, and everything is now back on course but running a day late. On Wednesday, Liz starts the short course of self-administered chemo to encourage the stem cells into the blood, and the district nurse will come in to show her how to do this. We have been advised to stick to the schedule for the stem cell harvest, starting on Monday 1st as the timing on this is not exact, and it gets everything back in synch again. So far there have been no ill effects, apart from the fact that Liz has been stuffing food down like crazy – but a doctor friend suggested that this is a side effect of the steroids she has been taking. So – the possibility of a quiet week to allow us to get over the frantic, and exhausting, activity of last week, then, a week tomorrow (Monday) the daily run over to Nottingham for the stem cell harvest. I will report again as and when anything happens. P.S. I am still trying to get a photo of Liz's new haircut up here, but my new phone won't connect to my computer so I can't get the photos off. It's almost as bad as owning an iPhone…….. |
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Not too much to report, hence the delay. Liz went to the hospital on Tuesday to have a calcium drip, and (a day early – slight change of plan) to learn how to do the next part of her chemo, which is by self administered injections. The injections themselves aren’t difficult (well, when I say that – I couldn’t do it, but then I’m known to be squeamish) – no, it’s the fact that the chemicals have to be mixed immediately prior to being administered. It’s not complicated, but it does have to be done just so. Having said that, it wasn’t quite “just so” when she did it yesterday – we lost a bit on the carpet, but we’re not saying anything to anyone about that……….. Today we were back early for a dressing change and another blood test. Liz is a little anaemic, but less so than when they checked her last week – so she is recovering naturally which is always best. And, an early visit to the hospital always involves bacon butties from the canteen – a special treat when we have to be up at some silly hour. We are still working towards Nottingham on Monday, and all is still on course – so let’s hope it stays that way. I will report again when we know more. P.S. We had dinner at the Bluebell - and we both agreed that it was great to get out for a change. Another step forward. |
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Quite a bit to report, but not much has happened. Liz has been self-medicating with the chemo injections, and they make her feel very strange – “wobbly” she says. She needs help walking now and then, but it does wear off. She has also started feeling sick again, but eating seems to help that. Last night (Sunday) we had an early Sunday dinner and set off for the patient hotel at Nottingham City Hospital where we were pleasantly surprised. It's pretty basic, but it does have everything you need. We didn't sleep terribly well, but who does the first night in any strange bed – neither of us certainly. It would appear that I can get an evening beer at “The Club” but I have no idea what “The Club” might be, although I hope to get there and find out tonight. At 9:00 this morning we presented ourselves at the haematology outpatients department, where Liz sat next to a girl she has been with on the wards and during the various outpatient visits. She (the girl) said that she was having a lot of uncomfortable bone ache, to which the nurse said “that's very good – it means the stem cells are coming away”. This was very good news for her, but less so for us, as it meant that Liz's stem cells weren't “coming away”. Liz's nurse then took a blood sample and, entirely as expected, nothing. They are looking for some particular count to be 1 or more and Liz's was 0.07. A long way to go. Disappointing. So, tonight we will have an early Monday dinner (chicken curry – see how my abilities are increasing?) and set off for the patient hotel at Nottingham City Hospital where it is unlikely that we will be pleasantly surprised again. Then tomorrow we will try again, and, assuming still nothing is happening, we will do the same thing the day after, when it is even less likely that we will be pleasantly surprised by the patient hotel at Nottingham City Hospital. I am expecting a long week, but I will update you when something other than da-di-da-di-da above happens. |
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Today at the clinic, the nurse told Liz that she was a bit anaemic. We knew this last week, but her body seemed to be recovering on it's own so the nurse in Derby said to leave it to get on with it while things were improving. However, the results are still very low, so today in Nottingham they gave her two units of blood. This takes about 4 hours, so I left her there and came home. There was some good news however, Liz's other magic number (not to be confused with original magic number) which was 0.07 yesterday had gone up to 0.4 – a great improvement. She is running a day late as she couldn't get a bed in the ward a week or so ago, and that delayed all her drugs by 24 hours, but they don't alter the timetable for something as trivial as a 24 hour delay. In effect, then, today was her first day for harvest, and with a count of 0.4 it looks promising. The professor in charge of the whole shebang came round today and Liz said he was entirely unfazed by it all, so we are happy. More tomorrow. |
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Not much more to report today. Liz completed her blood transfusion yesterday mid-afternoon and went back to the hotel. I travelled over later on. Not much of a day really. This morning we reported back and the Other Magic Number (see yesterday) had gone up to 1.01. Clearly a very good sign (0.07 on Monday, 0.4 on Tuesday and 1.01 today), but 1 is marginal and they decided to leave it one more day. So we repeat everything again tomorrow. One lovely thing though – cheered us up immensely. Yesterday, the two grand-daughters (now three-and-a-half) and mum decided to send Granny Liz lovely thoughts to make her feel better. What lovely thoughts could they think of? Answer “Pancakes, honey and sunshine”. Liz felt much better. |
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Not such good new today. First off, Liz's hair started to come out today – a traumatic moment despite the fact that it started exactly when they said it would – a fortnight after the big dose of chemo. Then, even though Liz's Other Magic Number had gone up to 1.87 from 1.01, there were few stem cells – worse, there were fewer than yesterday. A big, big disappointment. However, nobody there seems terribly worried. The professor in charge (known as “the Prof” – but not, apparently, to his face) has said that Liz is to come in tomorrow to see where things are, (but no change is expected,) that she will be on double doses of her injections over the weekend, and that we should come in again on Monday morning. We requested extra rations of pancakes, honey and sunshine, (see yesterday) which were duly provided, but to no avail. The one good piece of news is that the nurse dealing with Liz said she has never known a case where they have failed to recover stem cells which, after the disappointment, was very heartening. Fingers crossed for next week then, please, and all pancakes, honey and sunshine you can muster. |
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Bad day. Liz reported to the clinic as normal this morning and, as expected, there was nothing. They needed this to see what the trend was and they will start her on a different “releaser” next week. However, she was feeling a bit of tightness in her chest so had to wait for a doctor to see her. He decided on a x-ray, so she had to wait for that. Then she had to wait for transport back to the clinic. Then she had to wait for the doctor to look at the x-rays Then she had to wait for him to get back to her. He questioned her about the previous episodes, and in the end decided to prescribe a course of antibiotics. The snag with that was that the time was now about 1:15 – Liz had been there for over four hours, and the prescription could only be filled by the hospital pharmacy – which would take between an hour and a quarter and an hour and a half. Bit of a nightmare. We eventually got home about 4. And – all her hair has now come out. Oh dear. It was all too much and got a bit tearful. However, there was some good news from the Derby hospital yesterday. Liz had enquired about the latest reading for her Original Magic Number, and the results of the latest bone marrow biopsy. She had an email:- “I have your light chain results which are very good! … [the Original Magic Number is] … 0.79. Basically that is extremely low and now is a good time to be getting on with harvest and transplant.” I.e. Liz's Original Magic Number, which has been as high as 7,000, is now less than 1. “The bony part of the bone marrow is also reported with no excess of plasma cells and a negative stain (meaning you have a normal looking bone marrow and no evidence of myeloma at present).” Bring on those stem cells……. More on Monday afternoon. |
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After a nice, quiet weekend, we went back to Nottingham last night, and were back at the clinic this morning, all hopeful. Still no stem cells, so it's two more injections tonight and back for tomorrow. A doctor thought that Liz had a mild chest infection on Friday and the nurse said that in that case any stem cells floating about will have been co-opted into the fight instead of sitting around waiting to be harvested. She also said that in her 12 years there she had never known a myeloma patient fail to harvest stem cells in the end, so a little comfort there. Liz's white cell count was good however, and if it's better tomorrow they may switch her to a different “releaser” More tomorrow. |
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Big disappointment – still no stem cells. The readings this morning were still very low. They want a stem cell count of about 10 before they will start a harvest, and Liz has struggled since we started to get her's above 1. This morning it was 1.7 so they are going to call the present treatment a day, and we have to see the consultant on Monday to see what they will do next. We have no idea what it might be, or how far back Liz may have to go, but they have taken some blood today so that they can get a current value for her Original Magic Number which still has to stay low. I suspect that, because some of the treatments are extremely expensive, they start off with the cheaper ones, and only move to the more expensive ones when they have failed. You may remember, Liz's original chemo managed to reduce her Original Magic Number from 7,800 to 700, but then it started to rise again. Because of that, they switched her to an alternative which managed to get it down to below 1. The big snag with the alternative, though, is that it costs £750 per injection, and Liz had 11 of them. Had her current stem cell treatment nearly worked, getting the stem cell number up around 7 or 8, then there is a sort of booster treatment they can give, but that costs £5,000 per injection. So you can see why they try the cheaper ones first. But Liz has this tendency, when faced with a choice of items, always to prefer the most expensive even though she is unaware of the price. That may be the case here as well. I will let you know how Monday goes, but in the meantime we are going to enjoy a bit of well earned peace and quiet. |
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Well, so much for “a bit of well earned peace and quiet”. Liz is back in hospital with an infection. We woke up Wednesday morning looking forward to a few days off, but Liz had the sniffles. So we phoned the emergency line (for patients in Liz's condition) and they said to call back if her temperature went above 37.5. For the rest of the day her temperature stayed down, but she definitely wasn't well, and by early afternoon yesterday it was 37.9 and had stayed above 37.5 for two or three hours. In she went to be tested and hooked up to antibiotics. Her blood count was too low to let her out again so back to ward 302 she went. She seemed reasonably cheerful by text this morning, but I will know more after afternoon visiting today. Let's hope it doesn't mess too much with the stem cell harvesting plans…… |
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Liz is still in hospital (see yesterday). I went to visit her yesterday afternoon - she had been stuffed full of blood, antibiotics and fluids and she was looking much better. The doctors have been liasing with their colleagues in Nottingham and are trying to get her well enough to keep our appointment there on Monday, but it is touch and go. Today (Saturday) I have started to develop a sore throat (great!) which I probably got at the same time Liz got her infection. It has obviously affected her a great deal more severely than me, which is to be expected. However – it does mean that I am no longer welcome on the ward, so I can't visit any more. If it clears up by this evening I might get there but it doesn't feel as if it's clearing up, so who knows where we will be tomorrow and Monday. Fingers, as ever, crossed please. |
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Sorry to have left you all hanging – I hope it didn't get anybody worried – it was just a happy coincidence. To catch up…… Liz stayed in hospital over the weekend, and the doctors there agreed that I should collect her on Monday morning for her appointment in Nottingham (she would wear a mask to protect her from my nasty germs). In the event I wasn't as bad by Monday morning as I might have been, and it all went off fairly well – we got to Nottingham with plenty of time. Unfortunately Nottingham were running very late indeed, and Liz went in for her 10:40 appointment with the doctor just before mid-day. The consultation was fairly short and sweet – she would be put on a triple dose of the injections she had been giving herself starting on Thursday, and she was to come back in to the clinic to try for harvesting the following Monday (the 22nd). The bad news was that we had a prescription to collect and Nottingham hospital pharmacy is not a great deal faster than the Derby one – another hour wait. The good news was that we had the rest of the week free, and the even better news was that this was the week of our timeshare in the Lake District. So – having waited around for the prescription we shot home (via Derby to pick up a prescription the Derby pharmacy that hadn't been ready when I collected Liz that morning), pack a couple of bags and set off up to the Lakes. It was just after 4:00 when we finally left - having crammed everything necessary to leave the house for the week into a hour – and I expected to hit rush hour traffic at Stoke, but we didn't, then round Manchester, but we didn't, then north of Manchester, but we didn't. In short we had a great run up there – 160 miles in 3 hours– and arrived in time for a pint or two of Guinness and a splendid meal in the restaurant of the on-site hotel. This was Liz's first public appearance in one of her “chemo hats”, and she carried it off magnificently – didn't seem bothered by it at all. (‘Course the handsome escort will have helped there). Among the many things that didn't get done in our rush to get away was this web site, for which I apologise, but we have had a truly relaxing break amid wonderful scenery, with superb food and drink, and a bit of time to ourselves. Not what the doctor ordered – that would have meant another wait at the pharmacy – but nonetheless very welcome. The strange part about it all was that, knowing we were unlikely to be able to use our week, I had tried to rent it – something I have done a number of times in the past – but failed. I then tried various friends and family who might have been able to make use of it, but not one of them could. Then, this wonderful news that we had the week off – obviously the reason nobody else could use it was that we were destined to go – and very grateful we are too. And so, back to reality. We will be off to Nottingham again on Monday where Liz will be given an additional “releaser” along with her triple dose of the original drug. We have been led to believe that this additional drug costs around £5,000 per injection. It doesn't half make you grateful for the NHS. Finally then - again please – all the pancakes, honey, sunshine and crossed fingers you can manage |
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Monday 22nd Oct. 14:00. (and 23rd - see below) Well done everyone – all the pancakes, honey, sunshine and crossed fingers worked and, even as I write, they are harvesting Liz's stem cells. Liz's initial treatment for the harvest (two or three weeks ago) consisted of, among other things, a self injected drug once a day, which was upped to two doses per day towards the end of the last attempt. For this attempt she has been injecting three doses a day since last Thursday, and on Saturday she started to complain of aching bones – something we had been told was a good sign (so whilst complaining about it, she wasn't really). This morning, she was in considerable discomfort so we were quite hopeful, and when they came back with this week's magic number it was 12, and they start harvesting at 10 so whoopee! (This was the number that she struggled to get up to 1.7 last time). For some reason to do with two other magic numbers (understood by “the prof” and the nurses) they have to go quite slowly, and at 5:30 they are going to give her the first of the hideously expensive new injections, so she will be there all day. We won't know until tomorrow how successful the harvest has been, but the stuff coming out of the machine is “the right colour” according to the nurses. So, let us hope that the harvest is, as so eloquently wished by one of our nieces, “bountiful”. Best birthday present Liz could have given me! More tomorrow. P.S. 16:30. Just had a text from Liz – they have harvested 2.4 million stem cells – far more than they expected. (Overall, we understand they need between 5 and 10 million, but it takes two or three days.) So successful has today been in fact that she will now have to forego her expensive injection. So a win for Liz and a win for the NHS budget. P.P.S. Tuesday 23rd 11:00. (I'm doing this as a P.P.S. as it follows on from yesterday). Liz continues to pour forth stem cells in a manner reminiscent of the fountain in Geneva. They reckon she could produce more today than she did yesterday, and while that should be enough for the transplant, there is talk of keeping this veritable cornucopia of stem cells going in case any should be needed in the future. The decision is down to “the prof” so we won't know until later on this afternoon whether Liz is done today or whether she will go back tomorrow. |
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Wednesday 24th October. 09:00. Liz has been harvested. Over the last two days, they harvested just short of 5 million stem cells from Liz – a bountiful harvest indeed - and just about their maximum requirement. (I had the numbers wrong there – I thought they wanted 5 – 10 million. However, I got this number when they were harvesting from a very young woman – mid to late 20s – and they were trying to get enough for a second transplant later in her life. So for a single transplant, 5 million appears to be at the top of the requirement, and they obviously don't think Liz will need a second one as they had the option to continue but decided not to.) So well done to Liz, my little stem cell fountain, and she now gets a few days off until we return to see the consultant next Monday (29th) when we hope to be given a date for admission and the actual transplant. She will be doing a lot of sleeping. More next Monday (and I will try not to keep you hanging for a week this time…….) |
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Well, we didn’t see that coming! Liz was absolutely exhausted by the time they sent her home on Tuesday afternoon. A combination of the actual harvesting process, the anxiety about whether they will get any this time, not sleeping too well in the overheated hospital hotel, the travelling etc., etc. She slept most of Tuesday afternoon, a good part of the evening, all night, and didn’t wake up until about 10:30. We had breakfast, then she lay down again. She was certainly tired. Then, out of the blue, at about 12:30 yesterday came a phone call – “we have a transplant bed available, can you come now”. It appeared that if we turned this offer down, we might well wait until the end of November – which we didn’t want for all sorts of reasons. So, poor Liz dragged herself up, we packed her bag, and off we went to Nottingham where she is now ensconced in her isolation room. Yesterday, she went through the admission process and we had a long chat with a lovely nurse (from New York) who set Liz’s mind at rest about a lot of things. The process starts this morning and this is, unfortunately, the unpleasant bit. Quite how unpleasant it is going to get is not clear and it varies from patient to patient. I got the impression that on the “crappy” scale of 1 to 10 it can vary anywhere from a 3 to about an 8. The chemo she will receive is very strong stuff and, left to itself, will attack the kidneys so they first have to absolutely stuff her with fluids. With so much fluid going through, her kidneys are well flushed and that minimises the damage, but she will feel unpleasantly bloated. I am not certain of the timetable, but I think the chemo goes in today or tomorrow, and the stem cells are put back in over the weekend. This will lead to her slowly deteriorating until the low point about mid-week next week (Wednesday 31st). She can have visitors, and I have written some notes, including directions which will appear here a bit later on, but please check with me first as we don’t know exactly what to expect, and how she is feeling will change from day to day. |
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Liz had her chemo at 5 o’clock last night, and it has started to do it’s stuff. She felt very woozy just after she had had it, but when I left at about 6:00, she felt OK. But 10:00 though she was in pain. Probably nothing to do with the chemo, but she has to take regular pain killers, one of which is paracetamol. Unfortunately, she can’t take paracetamol with her current treatment as, apparently, it can hide a rising temperature. This is not a good thing if infection is one of the major concerns, as it is on her ward. So, although she continues to take other painkillers, they are not as effective on their own, and the doctors are having to try other things to control the pain. She is currently taking oromorph (a liquid form of morphine) and as at this morning it seems to be working. The other problem is that Liz has felt sick, on and off, throughout this entire process (even when she wasn’t expected to be) and that continues – she is feeling quite sick. Again, the doctors are trying to find anti-sickness drugs that will contain it. Unfortunately, one of the best weapons in their armoury, ondansetron, makes Liz feel sick! So battles on two fronts at the moment, and Liz has said no visitors today. I expect the visitors / no visitors decision to be made daily, so please contact me before going to see her. |
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Saturday 27th October 08:00. (and Sunday and Monday) What a week! Last Monday morning we didn't know whether Liz was going to produce any stem cells at all, and yesterday afternoon they put them back in. Liz had an uncomfortable night on Thursday as they tried to get the pain killers and anti-sickness drugs right, and the pain in her legs brought on by the stem cell release drugs continues. It will last some time apparently, nobody could say quite how long, but let's hope it's only days. So, by mid afternoon it was decreed that Liz was ready to have the stem cells returned to her, and at 4:30 yesterday afternoon, Liz got her stem cells back. She has had a thing called a Hickman line put in which is essentially a large tap on one of her major veins leading to two outside hose pipes. This was how they got the blood in and out for the stem cell harvest, and it gives the medical staff the ability to put stuff (stem cells in particular) more or less straight into her heart. (There is a small chance that this verbal picture may not give an exact impression of what it looks like – you could click here, or there is plenty of information out there if you just google “Hickman line”). They gave her a large dose of antihistamine before hand so she was pretty dozy, and then, in the space of about 25 minutes 4 small bags, of what I have to say looked say looked exactly like thin tomato ketchup, went in down the Hickman line. They monitored her vital signs about once a minute, but nothing untoward happened, and Liz went slowly off to sleep as the antihistamine kicked in. I sat with her, and left quietly when it was all done. That was it. That was what we had been anxious about for the last 9 months. The transplant was done. Now we wait. For the next week or so, Liz will be extremely vulnerable to infection as she currently has no bone marrow producing blood cells. Her old bone marrow (with the myeloma) was killed over Thursday night and it will take a week or so for the new cells to get to the right place (how do they do that?) and start production. Then another week or so until she is producing normal blood with all the numbers where they should be, then she can come home. As I said – what a week. P.S. Sunday 28th. Nothing really to report, Liz continues to be monitored round the clock, but she still feels OK, and is in good spirits. She has been moved to a room where the wifi works, so will be more active on the email. P.P.S. Monday 29th. Still nothing to report. Much the same as yesterday, although the doctors have confirmed that she will shortly start to feel bad – not a pleasant prospect, lying there waiting to feel bad, but we will get through it. She is now on line so emails are getting in and out more frequently than the once a day service that she has had to date. Keep them coming – I can't promise they will all be answered, but I can promise they are all welcome. |
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Tuesday 30th Oct. 09:00. (and Wednesday) Liz has started on the bad bit. When I got there yesterday afternoon she was feeling “crappy” – sicky and general malaise. We were expecting it, it means things are going to plan, so it's good news in that sense but it doesn't make things easier when you're feeling “crappy”. I suppose the knowledge that it will only last a few days helps, but at the moment it's at that stage where she just wants to be left alone. I have equipped her with a laptop and I'm dumping stuff off the Sky+ box for her. This means she is up to date with (among other things) Strictly, Downton and that new one about the Victorian shop – The Paradise, and (ashamed though I am to admit it) we sit and watch “Pointless” every weekday before I come home. It's not much but it does pass the time, and it's quite undemanding. So – please keep the PHSP coming (pancakes, honey, sunshine and prayers)– they all help. (My cousin has requested to be let off the pancake bit as he says he can no longer get into his trousers, but he is making up for it with sunshine. P.S. I have spoken to Liz this morning, and she says she is feeling better. Neither of us supposes that this is the end of it though – she is expecting to get worse again before it gets better. Wednesday 31st Oct. 10:00. Liz remained much the same yesterday, although I didn't see much of her as her brother John was over from France and went to see her. She managed for about 40 minutes and then we had to go. I hope to stay longer today. I have spoken to her this morning (Wednesday), and she is still ok, but the doctor says it will get worse before it gets better. It will happen as one of her blood counts sinks to zero. |
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Friday 2nd November. 08:00. (and Saturday) Sorry there was nothing yesterday but there wasn't anything to report, and the day was a bit frantic. However, I sat with Liz yesterday afternoon, and I am afraid that she still feels dreadful. “The Prof” did a ward round in the morning and the conversation went like this:- Prof: “How are you”? That's what you want from the head of haematology – knowledge and certainty. Bedside manner the nurses have in abundance, but a bit of knowledgeable encouragement goes a long way. Who knows, Liz just might be out in a week. Pancakes etc still required please. Saturday 3rd Nov. 13:00. Liz has had a sore throat for a couple of days now, and it is so bad today that she can't talk at all – we have been communicating by email this morning. The doctors are now trying to give her her medication either in liquid form, or intravenously which will help. She continues to retch and be sick – a fairly wretched state. The pancakes and honey appear to be failing, but please keep them coming, they are bound to work eventually. |
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Sunday 4th November. 08:00. (and Monday 5th) Liz is still very poorly, but the medical staff continue to say that she is on course. She has been suffering with a sore throat, vomiting, diarrhoea, and starting yesterday, severe burning pains in her diaphragm. This latest symptom was worrying – and it seemed to be increasing in frequency even while I was there. Then one of the nurses (the very informative one – they're all very nice, but this one answers questions when you ask) said that the doctors are convinced that Liz is suffering from mucositis - an almost inevitable consequence of the chemo she is receiving, and something that produces all the symptoms from which Liz is suffering. You can find out a lot more about it on the internet, but three snippets from wikipedia tell you what she is going through:- “75-85% of bone marrow transplantation recipients experience mucositis, of which oral mucositis is the most common and most debilitating, especially when melphalan is used. [Liz is on melphalan –TC] In grade 3 oral mucositis, the patient is unable to eat solid food, and in grade 4, the patient is unable to consume liquids as well.” “As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. …… Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful. …… Pain is often described as a burning sensation accompanied by reddening. Due to pain, the patient may experience trouble speaking, eating, or even opening the mouth.” Although this refers mainly to oral mucositis, it does affect the entire gastro-intestinal tract and can account for the pains Liz was suffering yesterday (probably ulcerated stomach sphincter), as well as the diarrhoea. However:- “Cancer patients undergoing chemotherapy usually become symptomatic four to five days after beginning treatment, reaching a peak at around day 10, and then slowly improving over the course of a few weeks.” Liz's day 10 was yesterday (Saturday 3rd) so this should be her low point – something confirmed by the nurse yesterday, and it sounds as if she is suffering from grade 4 mucositis. She is unable to take most things orally as it is painful to swallow, and she often brings stuff straight back up. But - she is on oral morphine which should be helping and I am hoping, if she requests it regularly, that it will keep her out of things a bit over the next few days Monday 5th Nov. 09:00. Liz looked noticeably better yesterday - she was talking a bit, and we watched an episode of Downton on the laptop. Whether this was a genuine improvement or whether it was just Morphine Lil making her second appearance this year I don't know and, at this stage, I'm not sure it matters. She is on oral morphine every couple of hours, and with it Liz can swallow liquids but even a well chewed (by her, not me) piece of melon defeated her yesterday, so she is a long way from well, but it is an improvement. Unfortunately I sneezed a couple of times yesterday, and today I have a slightly bunged up nose so, despite a normal temperature, I will probably not go over to see her. It doesn't feel like a cold but, unless we get specific clearance from a nurse (they tend to regard temperature as the prime indicator) I will play it safe. |
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I still can't visit Liz as I woke with a blocky nose, then sneezed three times during the morning. Shame, it's probably the result of my flu jab on Saturday, but far, far better safe than sorry. She texted this morning with a flash of the sense of humour returning (“Phone me and I'll squeak to you”) – a good sign. Later on, she sank back a bit, but from talking on the phone, she appears to be moving in the right direction. We don't have current numbers for her blood as she is receiving transfusions, so we will just have to wait and see. The Prof popped in this morning (and stayed a bit longer than last time) and reassured Liz that he would have her out of there next week. Since she can't even drink yet, that seems unlikely as the only way she can be hydrated is via a drip, but – you have to defer to the man who knows. Even then, the mucositis will take quite a lot longer to heal completely. I am not sure whether I will get to see her tomorrow, or even Thursday, but we text and talk and although it's difficult to be a support mechanism when you only have text, email and the phone, we are doing our best. So thank you all for all the pancakes. |
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Sorry about no news for the last couple of days, but since I couldn't visit Liz (my sneezing persists) I decided to pop down and see Vicki, Naresh, and the granddaughters. As far as I can tell over the phone, Liz continues to improve. She has started to sound like Liz again, and she reports feeling better. However, she is still being sick a lot, and she has very little energy. The former could be caused by all the drugs they are still giving her, and throughout this whole thing, Liz has shown a predisposition to vomiting where it was not expected. The lack of energy could easily be down to her build up of “proper” blood. I guess that without the right constituents in her blood, energy could easily be a problem but I don't think they will send her home until her blood is right. Even then, she has been in hospital, on and off, for a considerable time and her muscles will require building up again. Again. I have just spoken to her on the phone (Friday 09:30) and she sounds a lot more like her old self. She has started to eat a little (she had a bowl of porridge this morning) which is great news, but she still tires easily. Things are certainly moving in the right direction. |
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Saturday 10th November. 09:00. I finally got to see Liz yesterday. The Prof agreed that I could see her so long as I wore a mask, and she is greatly improved. She is eating a little more - she ordered half a cup of soup and a small piece of salmon with mash potato for dinner. Not exactly a grand bouf, but a whole lot more than she has eaten in the last week or ten days. And, she was a lot more her old self again, a great deal brighter all round, with the odd joke here and there. She is still physically quite weak, and although that is also improving, I think it will be some time before she is running up any stairs. The talk of her coming home is firming up, and it could be in the next day or two, which would be wonderful. |
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I am expecting Liz home today. Wonderful. The only possible fly in the ointment is that her platelets were a bit down a bit yesterday. What this means we have no real idea, but anything that is not quite right could delay her departure. They took more blood early this morning and we are awaiting the results. Watch this space….. |
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Well, that's it. She's home. The last 6 weeks have been absolutely exhausting for both of us, and we are both knackered, but Liz is home, with her treatment complete. She is as weak as a kitten after so long in hospital, and with her body probably still stuffed with toxic chemicals. She is so weak in fact that she couldn't get up the stairs last night and had to go up on her bum, and even then, she needed to rest for five minutes halfway up. But we can tackle this – just living at home will start building muscles up again, and we will probably phone the physio to see if she can help. It means no visitors for the immediate future, and no phone calls please, but she can still manage a few emails during the course of the day. We also have to tackle the problem of her food intake. She is barely eating, partly because she is still feeling sick, partly because for the last 10 days she has been feeling so poorly, and partly because, having eating very little for some time, her stomach will have shrunk to miniscule proportions. But all of this can be tackled too – I expect to be spending time at the soup aisle in Morrison's for the next week or so. She will remain under the care of the Nottingham team for the next month, and she will then be formally handed back to the Derby team. There will continue to be regular blood tests, probably several over at Nottingham while she is in their care, but ongoing too, and, if things go according to plan, we should get our life back to something approaching normal in early 2013. We are already planning a couple of much needed breaks. So – there we are, the process that started back at the end of February in Lanzarote is now over and we just have to wait for Liz to regain her strength – a process which we have been warned could take up to 6 months. I will keep this diary going, but hopefully the entries will become fewer and fewer as life returns to normal. Pancakes etc are hereby declared optional, according to taste. Woopee! |
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Wednesday 14th November. 17:00. Very little to report. I have been hanging on because Liz had an appointment with the myeloma nurse in Nottingham this afternoon, and I wanted to see what we learned. We learned that almost all of Liz's current afflictions, appalling tiredness, sickness, lack of appetite and so on are all perfectly normal for somebody three days after discharge from a stem cell transplant. We also learned that her blood counts are normal for somebody in that position too, and that she will be very weak for up to six months. Sadly, we learned that her hair will not start to grow back for six to nine months – a bit of a blow, but a result of the extremely unpleasant chemo (melphalan) she had at the start of the transplant. All in all, though, she is progressing exactly as she should – always good to know. She has another appointment next Monday where, all being well, she will be signed off by the consultant in Nottingham and formally handed back to Derby. At the same time her Hickman Line will come out (a minor procedure we gather, compared with putting it in). So, very little change, the patient is still as weak as a kitten and struggles to get up two flights of stairs. I am having to tickle her appetite with soupçons of this, modicums of that, and smidgens of the other which, despite my vast new culinary skills, can prove a bit of a challenge. Still no visitors please, but emails are still very welcome. P.S. When I declared on Monday that pancakes were optional, I meant just that, pancakes are optional. The sunshine and honey aren't, and since it has disappeared our new solar panels are producing pitiful amounts of electricity. Sunshine and honey restored please. |
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Saturday 17th November. 09:00. No major changes to report, Liz continues to be very weak and sick. I think she is getting a little stronger each day, although it can be difficult to tell this close to “the action”. She does seem to be getting around better, but the power chair is still in daily use. Sickness is the big problem at the moment - poor Liz will often just retch for 3 or 4 minutes at a time, and that is completely exhausting at the best of times, which this isn't. We thought we might have it cracked with the “little and often” food plan, but yesterday she was retching pretty much every hour and that made keeping anything down, including pills and fluids, quite difficult. We got her up in the afternoon, and I pressed her to eat some thin soup with bits of bread in. This seemed to improve the situation and she cheered up quite a lot. She continued to nibble every hour, and by the time we went to bed she hadn't been sick again. On the basis of that, I propose to get her up at 09:00 this morning and force feed her something – porridge perhaps – and we'll see how that goes. Having said all that, her anti-sickness pill regime changed yesterday as well – perhaps that is what changed things in the afternoon. This is the problem – its 2% inspiration and 98% guesswork. |
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Busy day yesterday. We started off by going to the hospital in Belper so Liz could have a blood test prior to her visit to Derby on Wednesday, then headed over to Nottingham for another blood test (different health authorities – different computers), followed by an appointment with the consultant there. On the plus side, the consultant was pleased with Liz's progress, her blood figures were pretty much as they should be, and her symptoms, including the retching and vomiting are not abnormal for her present stage in the recovery. She is definitely on the right road. With this in mind, she (the consultant) discharged Liz back into the care of the Derby group. We then had to wait for about half an hour before Liz's Hickman line was removed – an uncomfortable rather than painful procedure taking about 10 minutes under local anaesthetic. Another step on the road to recovery, and, with a bit of luck and a following wind, no more trips across to Nottingham. The final plus point is that, although Liz vomited a couple of times on Sunday night, she was fine all day yesterday, despite us travelling around with a plastic bowl all day. Another improvement. On the down side, Liz was utterly, utterly, exhausted by the time we got home 4 hours later. This is probably the reason she was vomiting and retching again last night and this morning. I shall continue to press small amounts of food on her every hour and hope it helps. Having said all that, her appetite is undoubtedly improving, although in very small steps. |
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Saturday November 24th. 10:00. This week has been difficult. Liz has felt nauseous pretty much all the time, and is retching for extended periods three, four, five times a day, mostly at night. Nothing seems to do much good, but the medical people all appear to think that it is nothing unusual. We will just have to wait and see. Liz spends her days on the sofa in our sun room, and the new log burner has been a godsend. The central heating never keeps the extremities of this room warm, but the stove gets the heat everywhere. Plus, it keeps the core of the house warm too, which means that, so far this year, I have been able to leave the heating off all through the evening which is a big saving. The downside of it though is that my life is governed by the timer on my phone. Between pinging off to remind me to feed Liz every hour, again to put logs on the fire every 20-25 minutes, and all the other sundry alarms like special tablets at 3:00, my tablets at 6:00, various appointments, feeding the cats etc., etc., I am trying to live my life in 10 minute intervals. This is very tiring, and we are now both exhausted, but we get through each day together, hoping that the nurse got it right when she said that Liz will be over the worst by Christmas. Never have I looked forward to Christmas so much. |
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Thursday November 28th. 09:00. I was going to update this on Tuesday, but Liz had a busy day, so I changed my mind and decided to leave it until Wednesday and report on how her activity had affected her. Then yesterday, the power supply on my computer went and I spent all day replacing it. So – this is a bit later than I intended. Liz started to show signs of improvement on Sunday night – I noticed that she was a bit more cheery than she had been, which made both of us feel better - and Monday confirmed the trend. Instead of retching and being sick half a dozen times, it was down to two or three times, and her appetite had increased very slightly – i.e. I wasn't having to force the food down her with quite the same firmness. On Tuesday, though, Liz had to do a blood test in the morning, and, in the afternoon, have the stitch out from where her Hickman line had been. A quiet day for you or me, but a busy one for Liz and I was worried how it would affect her. In the event it wore her out, but there appeared to be no other adverse affects, the signs of improvement remained, and continued through yesterday. She is being sick less (it was down to once yesterday), and although the nausea remains constant it is reducing in severity. She is eating a little more, and is generally more cheery, but the overriding issue is still the dreadful shortage of energy. This is probably a combination of the chemotherapy and an almost total lack of exercise. We plan to start working on the exercise a bit today. |
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Liz continues to improve slowly. She is eating a bit more, feeling sick a bit less, and has a fraction more energy than last week. All good news. Unfortunately she is still in quite a lot of pain. We went to her first post transplant clinic this morning and the results were all very positive. Her original “magic number” is extremely low – lower than it would be in a non-myeloma person – which is extremely good news. Her platelet count continues to mount, and everyone is very pleased with the results. The down side remains that they are still talking three to six months for a full physical recovery, and Liz remains very vulnerable to infections of all sorts. Vicki, Naresh and the two granddaughters were here at the weekend, but Liz had to retire to her bedroom because a) the time she would have been able to cope with the dynamos that are the twins could be counted in milliseconds, and b) unfortunately, they both had coughs so were probably very infectious. She is going back to retry one of the anti-sickness tablets that we rejected earlier in the year as actually making her sick, as there is always the possibility that our original “diagnosis” was mere coincidence. That might make things better – it might make things worse. And she has been given a new pain killer to try – a more refined version of one that made her feel “very peculiar” when she tried it earlier – which has fewer side effects. Let hope they both work. So, pretty good results all round, and her next appointment is at the end of January, so it looks as if a week in the Lake District is a possibility at some point, which will be great for both of us. |
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A quick update to let you know that Liz has taken a big step towards getting back to normality. The two medication changes that were discussed at her clinic appointment last Tuesday have proved a major success – the nerve pain in her legs is hugely improved, and she is feeling much less sick. The pain killer still makes her feel “wobbly”, but is nowhere near as bad as the previous attempt when it made her feel drunk! However, the big improvement is in her general demeanour – she is cheery and has much more energy, and I hope it won't be long before she is back to doing the cooking (but my head tells me this is a vain hope). So – there we are – another big step along the way. |
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Wednesday 12th December. 10:30. Not a lot to report, really, just an update to let you know we haven't forgotten. Liz's medication continues to control the sickness well. She was sick yesterday morning for the first time in a week – a big improvement. The leg pain is also now well controlled, but the wobbliness remains – Liz may be faced with the choice of pain-free wobbliness or wobbliness-free pain. Let's hope not. She is still extremely weak and struggles with stairs, but that is part the wobbles and part muscle loss – we will be contacting the physio some time in the new year I would expect. Visitors are still a problem, as she still tires very easily, but that is getting better, albeit slowly. The problem of infection remains, though, and will continue to be a stumbling block to visitors until May / June time next year. |
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Thursday 20th December. 09:00. Another no-report report. Liz continues to improve slowly. She is still occasionally sick, but it is now an infrequent event, usually associated with having to stuff 2,847 pills down before breakfast (I exaggerate slightly here). She still suffers the wobbles, but is managing it well, and we decided recently that she is simply not getting enough exercise. It dawned on me that whenever we go out it is just habit to get the wheelchair out of the car. This has now changed, and Liz is walking more. Last week, we had to pop out to the local farm shop, and while we were there we grabbed a cup of coffee. This produced such disproportionate pleasure in Liz that we have started to do it regularly, and it is doing her good. As someone who has to go out shopping or whatever more often than I would like, it is sometimes difficult to remember that Liz has only been out in the wide world recently for hospital visits. We will be getting out more in the future, although the current weather isn't helping. So, that's it. We are looking forward to a very quiet few days over Christmas, and I will post another report in a week or so if nothing changes. |
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Some good news and some bad. Bad news first. Over the Christmas period Liz managed to contract a cough and a cold. Not entirely surprising - we both agreed that unless we lived like hermits for three months it was probable that she would get something. Nevertheless, it is unwelcome, and inevitably Liz started running a temperature (don’t forget, she has the immune system of a newborn and as such, has no resistance to anything). We have been warned to monitor Liz’s temperature during this period, and should it go over 38 we are to call the hospital. Generally, she will then have to go in for monitoring and treatment. On Saturday night, Liz’s temperature hit 39, but we decided that we would leave it until Sunday morning, unless Liz felt worse in the night. When she woke on Sunday morning, it had gone down to 37.5. Crisis over. However, it went up again during the day, and at 5 o’clock last night the trigger point was reached again so, on instructions from the nurse, she checked in to the chaos that is the Medical Assessment Unit at the Royal Derby (no beds available on the haematology ward). They checked her over, started antibiotics, and found her a bed in a room with three other women, one of whom was having marble loss problems and kept them all awake all night apparently. At 9 this morning I had a text from Liz saying that her consultant may decide to send her home today which would be good, but we shan’t know until later on. Apparently this is the silly season for hospitals as all the GPs surgeries are staffed by locums (or should that be loca?) who, when in doubt, ship folk off to A&E, which then fills up and overflows. Not the best time to go. |
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So, some potential good news there, and some definite good news here. As you can see Liz’s hair is definitely starting to grow back, and so far it appears to be black. I was hoping for waist length blonde, but there you go – owt’s better’n nowt as they say, and Liz is very pleased. More when I know anything. |
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Just a very short update to let you know where we are. Liz came out of hospital yesterday, but while she was in there I was laid out flat with a dose of man flu. Probably the same thing Liz had, but she was dosed to the eyeballs with antibiotics, antivirals and Tamiflu and I wasn't so I have been flat on my back, stuffing paracetamol, wearing out the sofa since Monday. We are both now getting over it, but at that stage where you don't feel too bad, just generally under the weather, but you have no appetite, and absolutely no energy. We hope to improve steadily over the next few days, and I will write again when things are better. |
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Things are slowly improving. We both feel quite a lot better, but absolutely drained of energy. I have enough energy either to cook a meal, or to eat it, but both is a struggle – this presents some difficulties as you can imagine. On the brighter side, things get better each day even though my brain wakes up with more ideas than my body will be able to cope with. We managed to get round to a friend’s house for lunch on Sunday which was a very pleasant change. Liz lasted just over 2 hours, and we both collapsed when we got back home. Not much more to report really – I hope we will be able to get out and about a bit more as the week wears on. I will try an report again at the end of the week. |
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Sunday was hair examination day, and, as you can see, Liz’s hair continues to regrow – and it seems to be coming back in black which is good. I was hoping for blond, Liz was worried about grey, so black (again) seems a not unexpected compromise. |
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Just a short report, again, really to say there isn’t anything to report. We both continue to improve slowly but surely, but we are still suffering residual weakness from the flu or whatever it was. We have made a couple of trips out this week, once to have breakfast at the local café with the daughter of a friend who may be setting herself up in business, and another time for a quick cup of tea and a cake at the house of another friend. Both very enjoyable, but both left us a bit tired. On a positive note, Liz is back having physio, which is helping her get around and up and down stairs and seems to be improving her mobility all round. Not much else to report, I will put something else up when something else happens, in the meantime I will leave the photo of Liz’s hair for another few days…… |
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There's been no reporting this week as we have been away. A very, very quiet week in the Lake District. More for me probably than for Liz, but it did us both no end of good. Liz continues to make steady improvement. On the Saturday we left for the Lakes, (the 12th) Vicki, Naresh and the girls came up for breakfast with us (they were due in Rugby, and “overshot” to come to Derby first). It was pretty frantic, as you might imagine, but Liz managed three whole hours with the two human nuclear reactors that are our nearly-four year old granddaughters. For various reasons, coughs, colds, etc., they hadn't seen each other in ages – about 6 months I think – and it was a happy reunion. It was wonderful to see them all again, breakfast was a huge success, and it was a great start to our week off. While we were away, we ate in the on-site restaurant (two AA rosettes – excellent), and Liz managed for between two and three hours every night - apart from the Saturday when we got there following time with the twins and a three and a half hour drive - a big improvement in stamina. We didn't do a huge amount while we were there (to be strictly honest we did absolutely nothing at all – all week) but Liz did a lot more walking than she has been used to. We walked over to the country club at least twice a day where she would have liked to swim, but because of the infection risk, it is not advisable. Nevertheless, it all did Liz a lot of good. We went to dinner with Tago and Julia last night and they both commented, independently, on how much better Liz is looking and moving, so it is starting to be noticeable. All in all, a good week and some credit must go to the physio who has shown Liz various exercises, and taught her to start walking properly again. |
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Sorry it's been so long, but I have delayed this report because Liz had two bits of good news this week – but first, other updates. Liz is making huge daily strides forward. We have been out twice to the pub with friends and she has not only survived, but enjoyed it. She has started to make the evening meal (the biggest bugbear of my life over the last 12 months as I rise early, and by 6:00 in the evening have pretty much had it, whereas Liz rises much later and still has some energy left by then). So we are both very happy with this development. She is still pretty unfit however, but is, again, improving. She walked into her clinic yesterday for the first time that either of us can remember (no wheelchair) to receive some excellent news. Her first magic number (which was about 2,000 last January when her consultant declared that she would need treatment and rose to nearly 8,000 at it highest) is now around 10 – lower than a non-myeloma person would be. And the first half of the results from her bone marrow biopsy show her magic number there down from 80 at its worst to 1. Great numbers indeed, and she has been cleared to start going back to such germ-ridden places as church and swimming pools. And - we can go on holiday again. Life is certainly starting to get back to a feeling of normality. Then the final bit of good news – for which I was holding fire on this report – is that Liz went for a driving assessment today to get an independent opinion on her ability to control a car, in particular to operate the pedals – and is now driving again. She sat in the driving seat for the first time in over 12 months on the way home, and took yet another step back to normality. |
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Finally, the hair continues to grow back and is currently at the length which gives an initial impression of militant feminism. It would, however, probably need to be dyed a violent shade of purple to be entirely believable. It is, though, starting exhibit the first signs of Liz's former curliness, so there goes my hope of waist length blond. |
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Another long wait, and again only steady progress to report. Liz is now pretty much Liz again when you are talking to her (and it's lovely to have her back). She does a little more each day, and under the guidance of her physio, is walking and generally getting about ever more normally. We had a short break at a local Warner's hotel in February, and we really enjoyed it. One problem, though, was that the place is an old stately home, with a new wing added and, while there were bedrooms further from the dining room than ours, in a hotel of a thousand odd rooms, there were probably only six. I paced it out one evening – 300 yards. To most people this would not be a problem – indeed it could be regarded as working up an appetite – but to Liz it was a long way. She didn't want to use the wheelchair so she walked it – 300 yards each way, three times a day. A mile in total every day. This was a massive increase on the couple of hundred yards she had been doing before and, while she was exhausted after two days, it did her a lot of good and gave her a lot of confidence. We have now started walking round the farm again. The other thing that happened when we were there was that her three month “anniversary” came up and her immune system was cleared to go to public places such as church and swimming pools (taking the rest of her with it, of course). So Liz went swimming for the first time in ages. Well, when I say went swimming, it turned out that her top half went swimming but her bottom half had forgotten how to do it. Not surprising in retrospect as her brain has had to learn how to control all the muscles in her lower body since the spinal surgery, and this was one set of muscles, or muscle actions, that everyone forgot about. So she is planning on learning how to swim again when next we go up to the Lake District for another break, and our next door neighbour has offered the use of her pool whenever Liz wants to make use of it – something I think she may well do. A major change in our home life is that Liz is now cooking again and, most nights, she does the evening meal – an enormous relief to me as cooking dinner was probably my most hated chore. Sunday night dinner, though, is a collaborative affair, guided by my famous “Sunday Dinner Spreadsheet”. This technological marvel enables the user to set dinner time, the type and weight of the joint, and when the starter (if served) should be ready. The times for all the various components, potatoes, vegetables, roasties etc, are then sorted into order along with such mundane items as "put the plates to warm", and – lo and behold – a complete timetable for Sunday dinner. Liz does all the bits up to 6:30, which tend to be odd items, with large gaps in between, spread over a couple of hours (“4:40 turn the oven on” then 30 minutes later “put the meat in” etc), and at 6:30 I take over and do the rather more frantic last half hour. It works well and we sit down to watch last week's Top Gear at about 7:00, with neither of us feeling knackered. Another big improvement. Other “firsts” this month include more regular visits to the pub with friends (a big improvement in my life, particularly as Liz is now driving again, and I can drink a second pint), and driving down to Chesham to spend the afternoon and night with Vicki, Naresh and the granddaughters. Utterly, utterly, exhausting, but delightful. And finally, Liz is back at church. Driving herself there, surviving the complete service and driving home again. Life is getting back to normal. I will continue this diary, at longish intervals now, in order to record any further landmarks (but mainly so you can keep track of the hair) as we are hoping that the trials and tribulations of the last 12 months are now behind us and a more normal life beckons……. |
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Liz's hair continues to grow back but now her head is covered, the new growth is less noticeable. It is coming back salt-and-pepper (difficult to photograph accurately) - which has cheered Liz up as she was expecting large chunks of grey - and it has just started to cover the tops of her ears. |
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Oh dear, poor Liz is back in hospital. It started last Friday, but for some time Liz has had some pain in her left shoulder, which we were waiting for the next visit from the physio to sort out. On Friday Liz told me that she was having difficulty with her left arm – she could only lift it so far. As Friday and Saturday wore on it got worse until on Sunday morning, she could barely lift her arm out sideways at all. Then she dropped in the fact that it wasn't pain that was stopping her lifting it, it was simply that her muscles wouldn't do it. Her arm had plenty of movement available – I could move it for her – she simply couldn't. This frightened me as it was distressingly similar to how her legs went when she had compression of the spine this time last year so we immediately called her emergency contact at the hospital who told her to come in. We arrived at the madhouse that is the Medical Assessment Unit at the Royal Derby, to find the usual long queue, but Liz was seen by a doctor in pretty quick time (actually within an hour, although it didn't seem that quick at the time) who established that she still had all other movements in her arm, she still had feeling in all parts of her arm, and that the reflexes in her left arm were normal. This was encouraging, and he was of the opinion that the problem was muscular rather than neurological, but sent Liz for a CT scan to check. Two or three hours later, the scan was complete, and apparently showed nothing, so, with a diagnosis of a muscular problem, we went home. Quite fortuitously, Liz's physio was due to visit the next day, Monday, which, as it turned out, was very lucky. She examined Liz and quite quickly came to the conclusion that the problem did not appear to be muscular. She consulted by emergency phone call with a friend who is a sports injury physio to confirm that it couldn't be a couple of other things that weren't within her speciality and came back to the conclusion that there was indeed paralysis in that arm. The big concern then was that there might be a hairline fracture of the neck, which was very worrying indeed, as any disturbance there can result in total paralysis. More frantic calls to Liz's emergency number and she had to go in again. However, we agreed that rather than me taking her in, it would be safer if we waited for an ambulance, when she could be fitted with a cervical collar and “boarded” – laid on a rigid flat plastic board. The ambulance duly arrived, and carried Liz off, in some considerable discomfort unfortunately as the “board” was not designed for people who had the kind of spinal curvature from which Liz now suffers. After half an hour of this in A&E, an A&E consultant allowed her off the board, and, after some toing and froing she was admitted to the spinal ward at around 5 o'clock yesterday afternoon. The A&E consultant had looked at her past notes, an x-ray she had very recently of her entire skeleton (a skeletal survey), and a recent MRI scan and said that he could see no more myeloma damage, which was encouraging, but that there was some “wear and tear” on her upper spine. We know about this as, for many years now, Liz has suffered upper back pain, and has visited the chiropractor pretty well monthly throughout that time for treatment, so it may be that this problem is related to that, rather than to last year's episode, and that the timing is just an unhappy coincidence. Throughout all this we got the impression, more and more, that each person who looked at her thought this was not as serious as we had been imagining, which was comforting. Then, at about 8 o'clock last night Liz had a visit from another doctor to say that the (spinal) consultant had looked at her notes, the skeletal survey, and the recent MRI scan and decided that this was not an emergency, that he would see her this morning (Tuesday), and that another MRI scan would be organised in due course. All of which made things less worrying. So. There we are. As of this morning, Liz is in the spinal ward at the Royal Derby with a cervical collar awaiting a visit from the consultant, and possible further spinal surgery. I will keep this diary up to date daily as things develop. P.S. Liz is finding texting painful, and there is no wi-fi so, while she is very happy to receive texts and gets her emails periodically, please don't expect too much in the way of replies. |
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Not much happened yesterday. At 7 o'clock yesterday morning, according to Liz, the consultant “swept into the ward like a whirlwind, with an entourage of seven or eight lesser beings”. He said that he wasn't sure it was spinal but might be something which he said in Latin to the entourage, (and translated to Liz as “an injury”), that they would only be able to tell when the MRI scan was back, and then he swept out again. Poor Liz had been asleep when all this sweeping was going on so didn't ask for any details about what “an injury” might be so had to ask the ward sister later on. Apparently it might be muscle damage rather than nerve, and that was all we knew at that point. A bit later, Mr Bommiredy, who did the wonderful job on Liz's back last year, also came in to tell Liz that he had looked at all the x-rays, CT scans etc. and declared himself very pleased with the results of his handiwork and, when asked about “an injury”, that if it were muscular they could just stitch it up again. She was left with an impression of egos and competitiveness, but to be fair, enormous competence, and for both of us, certainly, the competence far outweighs anything else. We decided some time ago that neither of us needed bedside manner from a surgeon, just clinical decision making and skill. When we need bedside manner, we would probably turn to a nurse. However, all of that really only amounted to “we are waiting for the MRI scan” but since Liz has been declared a non-emergency, she is not at the top of the list, and yesterday was the first working day after a 4 day Easter break. So there she lay. Flat on her back, uncomfortable in her collar, unable to move her head, staring only upwards at the ceiling, unable to see anything that isn't held above her and unable to hold much above her as she can't use her left arm. Eating and drinking are both difficult as she can't see the plate or cup (she dropped half a tomato down inside the collar yesterday and spent some time trying to fish it out), and drinking everything through a straw. Texting is extremely difficult as she has to hold the phone above her head with her non-working left arm. That was yesterday really. Uncomfortable, not really able to do anything and waiting for the call to the MRI with no idea when it might come. Even the ward staff say the first they will know of it is when a porter arrives with a trolley. So please send her your good wishes but please don't hope for a reply. More tomorrow. |
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Nothing at all happened yesterday. At 07:00 Mr Calthorpe and entourage did their sweeping thing (see yesterday) and said that Liz was now top of the non-urgent list for her MRI, but it still didn't happen. Let's hope she gets it today. Her shoulder got quite a lot more painful on Tuesday night, so I suggested that she ask for stronger painkillers, and she is now on a small dose of morphine, which is keeping the pain at bay, and Liz more cheerful. You will be pleased to know, however, that there is no sign yet of the return of “Morphine Lil”, the doped up, zonked out, Liz of this time last year. The “injury” mentioned yesterday turns out to be, we think, a brachial plexus injury. This is the nerve system that runs from the spine across the shoulders and can be injured by trauma, but what the treatment might be we don't yet know. More tomorrow. |
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Good news – she's home. Liz had her MRI scan late yesterday morning and it was all clear for the spinal damage which everyone was worried about. Within minutes of the good news the collar was off, and Liz was being discharged. After three days of lying immobile, staring at the ceiling, it was a happy moment. It was decided that it is damage to the brachial plexus(?) which is the bundle of nerves connecting the spine to the arms and hands. This would normally only happen through fairly dramatic trauma to the shoulder so why Liz has it is a bit of a mystery - although I am thinking of changing her name to Job. (I know - a biblical reference from me – it's a bit like hearing Richard Dawkins quote the Bible, but it does happen occasionally). We think the most likely cause was Tim the decorator. Our whole house is in turmoil at the moment as Tim is decorating the entire house and every room is full of the furniture from the room next door. This involved us moving a lot of stuff about, and this seems the most likely cause, although it hardly qualifies as “fairly dramatic trauma”. She has to go back to the consultant's out-patients clinic next Thursday where I hope I will be able to sort out a little more detail. She should be referred on to both a pain management specialist (which doesn't sound good) and whatever specialist it is that deals with damage to the brachial plexus. There is no sudden cure for such injuries, but it should be curable in (I hope) the medium term. Meanwhile, we are both only too happy to have her home, and we are looking forward to a few days peace, quiet and rest. (Ah - just thought – that's not going to happen – the granddaughters are coming tomorrow……..) |
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The weekend went well, Liz thoroughly enjoyed her time with the four year olds, but she cannot get comfortable anywhere as she is in some considerable pain – enough that she still needs regular morphine. The shoulder is a bit of a puzzle, as a couple of friends in a position to know about these things say that the damage to the brachial plexus would be unusual in Liz's case. It would normally require a quite traumatic shock – one asked whether Liz had come off her motorbike recently. So what it is is not entirely clear yet. We will go the orthopaedic consultant on Thursday, but we only expect a referral to some other specialist, but which speciality remains a bit of a mystery. In the meanwhile, we make plans without any certainly of them coming to fruition. Frustrating. More after Thursday. |
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Liz attended her regular myeloma clinic yesterday where they just keep tabs on her blood figures and so on, and she was declared to be in full remission. Great news. Her myeloma consultant, Dr Allotey (a lovely man) was very concerned about her shoulder even though it's not, technically, his area. Anyway, to cut a long story short, he has referred Liz to a neurologist, (one who has already been recommended to us) which is also good news. The bad news is that, when I spoke to his secretary last night, his first available slot is Wednesday 24th – 2 weeks time. I begged and pleaded for something earlier, and we are the first for a cancellation, but I fear Liz may have a two week wait. Not so good, and in the meantime, she is taking her morphine three times a day which helps contain the pain, but it is a struggle. I will write again when something happens, but that my be a fortnight……. |
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We went to see the orthopaedic surgeon yesterday, and we didn't really get anywhere. To be honest, it was about what we were expecting but Liz will at least get a referral to a pain specialist, but who knows when? The surgeon suggested that it is probably brachial plexus neuritis, but internet searches all suggest that with that condition, the pain comes on some time before the loss of motion, which wasn't what happened with Liz, so I'm not sure if we are any further forward. The contrast with Liz's myeloma consultant is marked. We just happened to bump into him in the hospital corridor, and he wanted to know how Liz was doing. He wasn't happy when we said that we couldn't get to see the neurologist any sooner than two weeks (even going privately) and said he would phone the man and see if you could exert any influence. Whether he will be able to or not, he always seems to go that extra mile which is very impressive and makes you feel cared for. A friend recently suggested that Liz might have polymyalgia rheumatica, a painful condition similar to Liz's, but one that can be treated quite quickly. However, both doctors ruled that out very quickly, mainly because it comes on symmetrically (i.e. both sides) and Liz only has it on one side. So, this morning we are waiting for a phone call from our GP to see what can be done about upping Liz's pain killers. She is already taking a low dose of a drug that is good for nerve pain, so increasing that might help, and various sources have suggested that she could easily double her morphine dose with no ill effects. We bought a TENS machine yesterday which Liz has started using, but it's too early to give a definitive verdict. Let's hope something does some good, because waiting until Wednesday week will be difficult. |
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Some good news at last yesterday. First, I decided overnight that I would phone the Nuffield, ask if any pain specialists consulted there, and get an appointment with whoever was available. I did, they did, and I did. As it turned out, the person to whom we had been referred was available, so we are going to see him on Friday. (His name caused a little confusion when Liz spoke to BUPA as it sounds like Butch-kovsky, and that was what they looked up in their records. Unfortunately, he wasn't there, which would mean if we see him, we have to cough up ourselves. However, after some detective work, they eventually did find him, and he is, of course, Polish. It was actually spelled Buczkowski.) First bit of good news then – Liz sees a pain specialist next Friday. Then, later on, our GP phoned (another wonderful man). He has swapped Liz's liquid morphine (which she was taking every 6 hours) for a slow release tablet which will even out the effect of the drug over a longer period. He also doubled the dose of the drug dealing with nerve pain but Liz is having to do that slowly, over a three day period so the effect of that won't be apparent for a day or two. And if that still isn't enough, she can also continue with the liquid morphine if needed. So we are hoping that will help – and the TENS machine seems to be doing some good as well. Finally, at about midday I got a call from the neurologist's secretary saying that there was a cancellation and we have an appointment for 5 o'clock on Monday. So no wait until Wednesday week - a real piece of good luck (although Liz insists it's the result of prayer). So, although Liz isn't feeling any better immediately, something is happening and we should start to get somewhere early next week. Fingers crossed – we have to get down for the twins 4th birthday party next Sunday. |
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We went to see the neurologist last night, and immediately afterwards, the pain management specialist had managed to squeeze us in. It was a long evening – we left here about 4:00 and got back about 8:00 – and Liz was exhausted. The neurologist, Dr Bajaj, was very thorough but at the end of his examination, as we expected, he said he did not have enough information to make a diagnosis and he has therefore organised three more tests. The first, a more detailed MRI scan, will be done on Wednesday. Unfortunately, this involves being inside the MRI machine for about an hour and Liz really isn't looking forward to it - it is extremely claustrophobic and very noisy. Since the scan is of three different aspects, though, she is hoping that she will be allowed out between them. The second is a nerve conduction study of Liz's shoulder which will tell him which nerves are working correctly, which are not, and where they are not. For this, we have to go to Sheffield and we should get an appointment within the next 14 days. The final test is a lumbar puncture which will tell him if there is anything present in the spinal fluid which shouldn't be there, but this can take up to three weeks to organise. We were in with him for about 40 minutes, so it was a very thorough examination, and Dr Bajaj is very highly recommended, so Liz will now go through all that, and we will wait for the results. We then went in to see Dr Buczkowski (Butch-kovsky) who did another very thorough exam lasting over an hour! He was looking for mechanical (i.e. muscle/tendon) type answers but couldn't identify anything specific either. However, he added a couple of x-rays to the list, which we hope will be done at the same time as the MRI scan on Wednesday. He also reviewed Liz's drug regime and suggested a couple of tweaks, but nothing major and since upping the pain killers at the weekend, Liz declares herself much more comfortable. Mornings and evenings are still the worst time, though. So, we don't really know any more than we did, but Liz is a great deal more comfortable than she was this time last week and we will have to see what the next three weeks brings. |
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Not a good couple of days. Just after I wrote on Tuesday, Liz woke up, still in a lot of pain, and with a bit of a temperature. As she is still vulnerable to infection, she is under strict instructions to call her emergency number should her temperature rise above 38. When this happens, past experience tells us she will be called in to the ward, where she will be given a 4/5 day treatment with intravenous antibiotics. We didn't need this at the moment, so we ignored her possible temperature in the hope that it would go away. She took her temperature again a bit later, and it was 38.5. We checked the thermometer by taking my temperature – 37.3, dead normal, but we still ignored it. Eventually, around mid-day, it was still stubbornly high so we had to call in, and, as expected Liz was told to report to the day unit for examination. Packing Liz's bag is, unfortunately, now second nature so off we went. When we got there, there were the usual checks, blood samples etc, and her temperature was – 37.3. How did that happen? No idea but we were both very grateful. However, by this time she was in the system so we had to wait for a doctor who prescribed a course of oral antibiotics and sent her home. Relief. Then yesterday we got Liz to the hospital for her un-looked-forward-to MRI scan. We had dosed her up to the limit with painkillers, and she was very woozy which we hoped would get her through. It was going to take up to 90 minutes so I left her and went off. In about 20 minutes I had a tearful call from Liz saying that she was in so much pain that she couldn't lie flat on the machine's table and after a couple of tries they had had to abandon the whole idea. She said on a scale of 1-10 the pain got as high as 9, and Liz always seems to me to be fairly stoical about pain, so it was obviously bad. So – no MRI scans, a big disappointment. I have phoned the secretaries of the two consultants involved but, as yet, not heard back so I am not sure of the implications. The pain seems to get worse daily, and she is now clearly struggling with it but I don't know what else I can do. I shall phone the GP this morning to see if he can change the drug regime, and I am waiting a call from the pain management man's secretary but that is about it. She is in dreadful pain, and I feel so helpless. It is tearing us both up. Anyway – back to the hospital this morning for an ultrasound of the shoulder which shouldn't require lying flat, but, just what we needed, my car broke a main suspension spring on the way home yesterday and is now in the garage. The new car isn't here yet so we will be using Liz's Smart – not the most comfortable method of transport for someone who winces with every bump. (On the plus side – the Mercedes garage have organised a loan car for me until the new one does arrive, but there isn't time to pick it up before we leave this morning, although we should have rather more comfortable transport from this afternoon.) So please pray, send your good wishes, whatever you can, and hope we can at least get some of the pain relieved soon. |
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Just a short update – Liz was reasonably good on Thursday morning and the ultrasound scan went well. The pain was sufficiently low that Liz was able to enjoy a cup of coffee and a bacon butty afterwards, and later that day we had a call from the pain specialist (well, his secretary) to say he had seen the images and it all appeared normal. I'm not sure whether this is good or bad. The pain got a lot worse in the afternoon, though, and had reached 7 or 8 by the evening. We go back to see the pain doctor on Monday, and we have an appointment at the Royal Hallamshire in Sheffield on Thursday for a nerve conduction study, so more as all that happens. |
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The weekend went better than we might have hoped. The big thing was to get Liz down to Chesham for the granddaughter's 4th birthday party. She missed last year because she was in hospital and was determined not to miss this one. The big problem was the 2:30 car journey down the M1 and back, so we decided to go down a day early and stay overnight, and because my BMW is being mended (see Thursday 18th) the local Mercedes dealer had lent me a car – a rather splendid CLS Shooting Brake. However, getting a wheelchair (somewhere comfortable for Liz to sit at the party) and the bike we had bought for a birthday present (mum and dad bought the other one) into a boot smaller than I am used to proved a bit of a jigsaw. However, we got everything in and set off with Liz dosed up with morphine. We went for about 40 minutes before Liz had to stop and walk about, but after that we went for another hour plus and got to the hotel in plenty of time. Liz had a rest, a dose of morphine, and we went over to see everyone for an hour, and gave the girls their bikes which went down very well, as you can imagine. Then back to the hotel for a rest, dinner and, for me at least, a couple of beers. By the time we went to bed, Liz had managed really well and had been in less pain for most of the day than we were used to. A relief. Sunday morning was as difficult as usual, stuffing down pain killers and then waiting for them to work, but we managed to get down for a late breakfast, then a rest, another dose of morphine, and over to the church hall for the big party. We got there a bit early, which gave Liz a chance to catch up with some of Naresh's family, (including the new baby), and some of Vicki's friends. She managed just over an hour of the party, with large numbers of four year old running round and shouting, but we had to leave early – right in the middle of Naresh telling a wonderful story dressed as the Wizard of Rainbow Land, complete with hat, gown and flowing beard. A half hour rest in the hotel, another dose of morphine, then back on the M1 at about 4:00 hoping to miss the worst of the traffic. We had to stop again after about 40 minutes, but then managed to get all the way home in one go with the pain coming and going. Liz managed really well, with no moaning at all despite being in a lot of pain at some points over the weekend. It seems though that moving about helps things. She wakes up in a lot of pain, having been in bed all night, but over the weekend the daytime lying down was limited to breaks of between half an hour and an hour now and then, and she did seem to be a lot better, so we will be trying a slightly more active regime to see how that works. We had hoped to see the pain doctor again today at 12:00, but I have just had a phone call saying he has had to cancel all his appointments this morning, so we must now wait for a new date...... |
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It's been a busy week. Monday was quiet enough after the pain doctor cancelled all his appointments, and that gave us a chance to catch our breath after the weekend - but we did learn one lesson. Liz had been taking an antibiotic at 3 o'clock every afternoon but the course was completed on Sunday. Unfortunately, when 3 o'clock came round on Monday she knew she had to take something, so took her slow release morphine pill. She normally takes these at 8 in the morning and 8 in the evening and they last for 12 hours, but now we had a problem – when should she take the next one? She decided to leave it until 8 the next morning, but when she woke up on Tuesday the morphine had all worn off, and she was in terrible pain. She couldn't do anything, couldn't find a position to alleviate it and she was suffering badly. On top of that, I had to get her up and to the hospital in Belper for a blood test by 11 o'clock, and trying to draw the line between leaving her long enough for the pain killers to work and getting her to the hospital in time was stressful for both of us. It did show us just exactly how much pain the morphine is dealing with though. Having got her through the blood test, we stopped off in Belper for a coffee and a bacon butty, which helped things. Morphine and caffeine seem to work well together. Then there was just time for a rest and we had to get into Derby to pick up the new car. It should have been an exciting occasion, but there was a lot to go through, and Liz was still in pain so, lovely though the new car is, I couldn't get as excited about it as either Liz or the salesman would have liked. Then home, exhausted. Yesterday (Wednesday) was always going to be bad. Liz had to get to the hospital in Derby at 1:30 for her monthly calcium infusion, which can take anything up to an hour, then we had to get her to Sheffield for the nerve conduction study for 4:30. That may not sound like too demanding a timetable, but Sheffield is over an hour away at the best of times, both the A38 and the M1 can produce very slow traffic at that time of day, satnavs can't always be relied on to get across large towns by the best route, and finally, we don't know the parking or the hospital when we get there. Liz was in a lot of pain, and every time the car hit a bump she sometimes winced, and sometimes yelped with the pain. I was always going to be stressed out, and indeed I was. It was a terrible journey, but despite all that, we arrived for the appointment 10 minutes early. (Which does show I was right though – it was a tight timetable). The doctor attached electrodes all up and down Liz's arms and for over an hour, gave her small (and some large) electric shocks which he measured on a screen. To say Liz was exhausted doesn't really cover it, and when he had finished, she lay back on the couch and just went to sleep while the nurse brought us a cup of tea and some biscuits. He wouldn't be drawn on the results, but said he had to study the various graphs in some detail and would get his report off to Liz's neurologist today. So we must wait. We eventually left there around 6:30, and on the way back, Liz was very comfortable with quite low pain levels. She was chatting about the areas of Sheffield she had known as a student (expressing surprise that it had changed – from 40 years ago!), declaring how comfortable the seats in the new car were, admiring the Derbyshire countryside. Completely different from the way up there. As our American cousins would say – go figure!. We got back here just after 7:30, at which point there was no way I was going to start cooking so we came via the chippy, ate our dinner and had an early night. I am now waiting to see how Liz is this morning, and, because yesterday was so fraught, I am expecting her to be bad. We have another appointment at the Royal Derby this afternoon (1:30) and the pain doctor had given us a replacement appointment tomorrow evening at 6:00. A busy, busy week, (made worse by the fact that I am also trying to get our caravan site open for the Bank Holiday weekend). I don't think this afternoon is going to produce anything useful at all as it is a follow up visit to the orthopaedic department, so I will probably report back on Saturday after we have seen the pain doctor. |
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As predicted, the appointment at the orthopaedic clinic came up with nothing new. The doctor agreed that, as the matter was now in the hands of the neurologist and the pain consultant, there was little they could usefully do unless Liz was referred back to them for something specific. Last night's visit to the pain consultant was more constructive. He gave Liz another thorough going over, spent a long time looking at the x-rays and MRI scans that have been done over the last few weeks, and has come to the provisional conclusion that the problem may be a narrowing of the spinal canal around Liz's neck (C5, C6 for the medically trained). Unfortunately, the MRI scans are not too detailed and he, too, needs another, more detailed scan, which will be difficult if not impossible to obtain. To do an MRI of the neck region, it appears that Liz must lie flat on the table with a special collar on, and as this forces her neck into an extremely painful position, she is no more able to do that now than she was two weeks ago. He is going to talk to an imaging consultant about what options there may be for a scan, and also to the neurologist as their paths are beginning to converge. In the meantime he has made some changes to Liz's morphine regime which we should be able to start on Monday when I can organise the necessary prescriptions with the G.P. Meanwhile we can only sit and await further developments |
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Liz got worse over the weekend, and last night (Sunday) she lost most of the ability to grip with her left hand. This was very worrying but I knew if I rang the hospital or 111 and they wanted her in A&E they would probably send an ambulance. The paramedics would need to “board” her in the ambulance, which Liz would not be able to do, so I foresaw an unpleasant stalemate – Liz would be screaming with pain on the board, but they wouldn't move her without. Should I risk taking her in in the car? I was at my wit's end with worry, and in the end I had to do something I try very hard to avoid, and I phoned a retired G.P. friend who, on balance, agreed with me – take the car. A nightmare decision. A&E was not too busy when we got there just before 6:00, and Liz was quickly run through the usual triage procedure, but it got busier and it wasn't until about 9:00 that a junior doctor examined her. He then went off to report and came back about 45 minutes later to say that he had discussed Liz's symptoms with the A&E consultant and the on-call orthopaedic consultant and they were convinced that this was not a spinal compression. This was good news, but at that point they would go no further - they said Liz could go home. This was not a terribly confidence inspiring result, but there really isn't anywhere else to go. We already have a neurologist working on it, orthopaedics say there is nothing for them to do, and it would pretty much have to be either orthopaedic or neurological. We have written to the neurologist with a list of Liz's worsening symptoms but I suspect he will want to wait for the results of a lumbar puncture for which we haven't yet had an appointment. The pain specialist appears to be moving things forward but so much depends on an MRI, and if the only way to do that is for Liz to lie flat what happens? It's all very worrying. |
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We had a bit of a bad day yesterday. Because Liz's symptoms got worse over the weekend, and when we went to A&E, the orthopaedic department just seemed to say "it's not orthopaedic, go home" we felt we had been short changed. When I spoke to him on the phone yesterday morning, our GP agreed with us and arranged an emergency appointment for one of his partners to see Liz immediately. When we got there around lunch time he examined Liz, but thought there wasn't much point in letting her fester in the assessment unit at the Royal Derby for two days only for orthopaedic to do the same thing. He thought an emergency appointment with the neurologist was the best route, but the neurologist's secretary doesn't work in the day on Monday to Wednesday so despite both our GP and I leaving messages, we heard nothing until about 8:00 last night. Then all we got was "the neurologist doesn't think it's worth seeing Liz until all the test results are in". One of the tests is the MRI that Liz can't manage and the other is a lumbar puncture that apparently needs to be done at the Royal, and we don't even have an appointment yet. Arrgghh!! In the meantime, on both Sunday and Monday mornings Liz took her pain killers at 9:00 with her morning cup of tea and within two minutes had thrown up and brought everything back. This presents a bit of a problem because it is almost impossible to know how much of her medication she actually got. It is not safe to assume she got none and just take it all again as some of these are quite powerful, so she may not have been getting all her pain relief for the last two days – we have no way of knowing. Anyway, a friend, Julia, has been chasing round and has located a vertical MRI machine in Leeds where Liz could sit rather than lie flat, and it is open rather than enclosed as it's main use is for claustrophobia. I shall follow this one up today. I suspect we will have to pay for it but at this stage I don't care very much. I am also going to investigate the possibility of a general anaesthetic, as I know that it can be done but how, whether it is a suitable answer to Liz's problem, when, and the cost I need to find out. When asked which was the less unpleasant, a three hour round trip to Leeds, or a general anaesthetic, Liz plumped for the general – I hope she gets the chance to make the choice. We shall try giving Liz her morning pills one at a time over a longer period to see what happens, but if it continues Vicki suggested that we can look at morphine patches or even a syringe driver – a device that pumps morphine intravenously very slowly throughout the day. I shall also check with BUPA to see if they have any other suggestions. We were close to despair last night after the neurologist didn't want to see Liz, so she phoned the leader of her church who came round and prayed with her, and I had a long conversation with Vicki. Decisions were made. We both felt better in our own ways. Liz is still in an awful lot of pain, her symptoms are getting worse, and beyond the GP we can't get anyone to take much notice, but, we do have a plan, and with the GP on my side I now have the bit between my teeth. |
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A busy day yesterday, and the plan is showing results. First off, I contacted the local Nuffield hospital to find out whether they could do an MRI under any form of anaesthetic, and the answer is they can't. The MRI machines don't allow for the monitoring that would be required, but they could do it at a big NHS hospital. However, the scanner technician did know of the vertical MRI machine in Leeds, and that gave me confidence that it wasn't some sort of rip-off. Then I got on to the Royal Derby to ask the same anaesthetic questions. They can do it, but only when requested internally by a doctor – there is, unsurprisingly, no time in the MRI schedule for private patients. And she had no suggestions where I might get squeezed in. Next I got on to Leeds but got some bad news – they can do all the scans, but for the scans that we want – upper spine - the patient does have to be on a flat bed. It doesn't have to be horizontal, but the bed is flat. No good. The man I spoke to reckoned that their centre in London might be able to do what we needed though – the machine is different. Next port of call – the machine in London. It appears that they can do everything we want – the upper spine with Liz in a sitting position – some good news at last. The bad news – it will take between 3 and 4 hours depending on how long Liz can sit and it will cost a rather hefty £1,700! The final port of call that morning was BUPA to see if they could give me any pointers that I hadn't thought of. It started with some very good news – they can cover the bill for the scan. I will perhaps believe that when I see it, but it is certainly promising. Beyond that, they said that there is no reason why the other test – the lumbar puncture – can't be done immediately at the Nuffield, and they will cover it. So – more good news from BUPA. Then, unexpectedly, we had a call from the GP. He wanted to know if Liz had deteriorated any further, and he has arranged an emergency appointment for us to go back on Friday when he will decide what to do. It seems quite likely that he will get Liz admitted again (although this means the madhouse that is the MAU) and we will have to plot a means for keeping her out of the clutches of the orthopaedic department. So it looks good – we can get the required scans but we have to go to London which will be an ordeal for Liz. There is no way Liz is going to manage there and back in a day. We could go on the train, but that is nearly 2 hours each way, plus the journey between here and Derby station. And we still have to get from St Pancras to Oxford street - if she is in pain in my car, I can't imagine how she would be in a regular taxi. Worse, to get there at a sensible time she would have to get up around 06:00. So – we will have to stay overnight, at least one night and probably two. Do we drive down, stay with Vicki and get a limo to run us into central London for 10:00 or whenever – that's another early-ish start. Do we stay in a hotel near the clinic – that's expensive and we still have the travel problem. I could drive all the way to the hotel but it seems unlikely that they will have any kind of car parking facilities - some stuff be investigated. But whatever we do, getting Liz to and from the machine in London is very clearly not a minor undertaking. The final call, then, was to the neurologist's secretary to sort out exactly what is needed, whether it is worth subjecting Liz to the ordeal of the trip to London (although I suspect that the answer to that is yes), and why we have to wait for the NHS for an urgent lumbar puncture when we can get it done privately. She was some time getting back to me and I did wonder whether my highly emotional call last night had upset her, but she did get back to me and she said that the neurologist said he could call tonight (Wednesday) at 19:00 to discuss the various issues. Thinking about it, he is right – there is little point in taking Liz to see him. He could observe the deterioration, but without the diagnostic information he needs he still can't do anything. However, I now have some specific questions for him and we await his call. So today – first, double check that the Leeds scanner can't, and the London scanner can, do what we need. Second, check the options and hotels in and around the area of the clinic. Lastly, it appears that the delay in the lumbar puncture might be a protocol issue. The neurologist wants his team at the Royal to do the it (which means waiting) and it appears that it may be unethical to get someone else to do it. I hope to explore this with a couple of medical friends today before he calls. I may be less concerned about ethics than he is. |
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The neurologist phoned, as promised, last night and the conversation lasted just over half an hour. In summary he said that the nerve conduction study we had done in Sheffield suggested that the brachial plexus (the nerves spreading out from the spine to the arm and hand) was fine, the problem appeared to be in the spine. Having looked at the existing MRI scans (March and April) he says that Liz's upper neck has quite a bit of arthritis and he thinks this is the problem. Liz has had problems with this part of her neck for 20 odd years now, which would tend to confirm that. Surgeons don't like to operate in this area as there are so many nerves and blood vessels, so he suggests that physio will let Liz's nerves learn new pathways to control her arm in the same way that she learned to use her legs again after the surgery last year. He went on to say that the lumbar puncture is less critical now as he will only be using the results to eliminate some fairly unlikely possibilities. However, he definitely wants the MRI scans as a soon as possible, and he emailed the referral letter this morning, so a trip to London will go ahead. I shall contact the pain specialist to find out if there is any way we can help Liz make the journey and sit for 40 minutes in the MRI machine. I am not sure how it will all work, but I shall get on to that today. Liz's pain was slightly better yesterday, but whether that was due to the slightly changed drug regime or coincidence we won't know for a day or two. Her right pupil remains dilated, which can be uncomfortable in bright light, so she is currently walking round, looking a bit like a pirate in an eye patch. Things seem to be moving but prayers, crossed fingers, pancakes honey and sunshine are all still required please. |
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Liz’s pain levels were about the same yesterday as on Wednesday so perhaps the new drug regime is paying off. It is still bad, but at least she doesn’t screw her face up with pain every time she moves. We got out and walked round the house two or three times yesterday in the sunshine (thank you all for that – and the pancakes, prayers etc.), and there is no doubt that not laying immobile for long periods on the sofa helps. Plus Liz now has stuff in her greenhouse so she can have a bit of a potter in there, and there are baby lambs in the fields. Some good news yesterday, possibly. The neurologist said that one of his other patients had suggested that there was another of the vertical / sitting (non-lying flat anyway) MRI machines in Solihull. I checked it out and indeed there was. I spoke to the people there, explained exactly what Liz’s problem is, and, while it is still a flat bed, they reckoned that they could do it because they deal with a lot of patients with osteoporosis and bent spines. So, I have booked an appointment for Monday week (13th –there wasn’t anything sooner) and if it comes off it will save Liz a lot of difficulty – Solihull is only an hour away. Today we have a visit to the GP to evaluate Liz’s deteriorating symptoms and I am not sure what he will do. Admission to the Royal seems a real possibility and we both regard that with mixed emotions as you can imagine. I will add a footnote here later today when we get back….. 13:00. As I had secretly hoped, Liz is being admitted. Her symptoms were worrying me greatly, and had she not been admitted I am not at all sure what I would have done. The GP was also concerned and couldn’t make much sense of all the symptoms, so spoke to the neurology department, and they said to admit her. She will be going to Queen’s Medical Centre (QMC) in Nottingham, which is the local neurology centre. They will have the facilities to do the required MRI scans, under anaesthetic if necessary, and a lumbar puncture. More than this I don’t know at the moment, but I will update here as and when….. |
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We got Liz to the QMC in Nottingham about 4 o'clock yesterday afternoon, and it became clear throughout the afternoon that she was being treated as an urgent case – pretty much vindicating all the jumping up and down I was doing during the week to get someone to take her symptoms seriously. During the admission process it transpired that the neurologist she has been seeing went on holiday yesterday, as did his secretary, and no one can get to Liz's notes. This means that Nottingham will have to start from scratch plus what we can tell them plus what our GP can tell them. In some ways this might be a good thing as they will start with a blank slate rather than someone's preconceived ideas. Not that I am suggesting that the neurologist is wrong in his diagnosis – he is far too well respected for that to seem likely – but her symptoms have changed drastically in the last week and a fresh pair of eyes will be useful. A young junior doctor gave her an initial exam early in the evening, then spoke to a consultant, and around 10 last night came back to say that the consultant had arranged two tests to be done ASAP (which means that they will probably have been done some time last night). She (the consultant) wanted another CT scan of the head, and an angiogram which I understand is the same as a CT scan but with something injected to enhance the image so that the blood vessels can be seen clearly. They are looking for any enlarged blood vessels in the brain, which, with my vast layman's knowledge, would seem the sort of thing that might produce Liz's symptoms. Not knowing when this would take place – there was, as always, a queue – I came home, had a bite to eat and, after a quick text to Liz, got to bed around midnight. As you will gather from the timing of this I didn't sleep much as I hope to get back over there early this morning to be there when the consultant makes her first round. Liz's brain is a little woolly round the edges at the moment and she can forget stuff, so I want to make sure nothing gets missed. I'm not sure what we are expecting now, but at least she is in the best possible place and I am reassured by the fact that, while she is obviously urgent, the flashing blue lights, sirens, and other signs of a genuine emergency are not present. The neurology department is on the case. More as and when I can. |
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I got to the hospital around 10:00 yesterday just in time to catch the neurologist's first visit to Liz. She was unaware of Liz's difficulty with an MRI and was quite annoyed when she found out as she had cancelled the two overnight CT scans in the expectation of an MRI. It appears that there is only one anaesthetist available over the Bank Holiday weekend, and he/she was going to have no time to help Liz through such a scan. Reading through the last week, I realise that while going through all the troubles we have been having with the medical profession, I haven't actually said that over the week, Liz's symptoms have become more and more stroke-like involving her face and nerves that don't go down the spine. This was what worried the GP so, and what the neurologist was concerned about, so an MRI was definitely needed. In the end Liz agreed to try with the help of morphine and valium. They got one, but it involved a lot of encouragement from the man doing the scan, quite a lot of shouting and screaming from Liz, and she described the pain levels as about 11/10 – amazing woman. The good news is that the scan showed no aneurysms (so no stroke) and no large lumps - the two major worries. So we still don't know what it is, but Liz and I felt immediately better and it was obvious that the neurologist lady felt better too. There is no more to be done now until Tuesday when, having seen what Liz had to go through to get that scan, they hope to get an anaesthetist on the job. I hope so. So unless anything unexpected happens before then, I will report back on Wednesday morning on Tuesday's events. |
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On Sunday they did a lumbar puncture to take a look at Liz's spinal fluid and they found some proteins in there that shouldn't be there, but the neurologist was a bit puzzled about exactly what it meant. However, an infection looked possible so, over Sunday night and Monday they had Liz on massive doses of broad spectrum antibiotics, but I'm not sure what results we might expect to see – if any. Yesterday a consultant neurologist lady came round (not sure what the previous lady was as I could never see her badge) and she gave Liz a very thorough going over. She, too, pronounced herself slightly puzzled but said that the bits of Liz that are affected are not all related or controlled by the same nerves or brain paths, so where a mechanical cause might be would be difficult to imagine. This lead her to conclude that we are looking at something more like an infection. They are now waiting for something called the cytology results. (I have no idea what those might be, but I gave up looking up medical stuff on the internet a year or so ago when I gave myself a thorough scare quite unnecessarily.) If it isn't a mechanical type problem (bones, tumour) then an MRI isn't going to show anything, so that idea is temporarily shelved much to Liz's relief. They want a CT scan (not sure of the difference) but that doesn't involve the large collar that the MRI requires and Liz should be able to manage it. The consultant we were seeing privately returns from holiday today so she may see him, and it will interesting to see what he says. More tomorrow if anything happens. |
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Over the last two days a lot has happened, but not much has changed. The consultant we were seeing privately (who I think is very senior on the neuro team) examined Liz on Tuesday, and that was useful as he is the only person to be able to assess the progress of Liz's symptoms. However, they remain puzzled. I saw Liz's haematology consultant in Derby on Tuesday and he has got his colleagues in Nottingham on the case as well. Unfortunately, haematology in Nottingham is in a separate building from the QMC, about 2 miles down the road but I assume they are used to this situation. (However, inter-departmental communication does appear to be better in Derby than Nottingham although that is based on not a lot of information.) The main thinking now is indeed that this is not a mechanical problem, i.e. no bones pressing on nerves, but is organic, i.e. it is being caused by some organism that is excreting stuff into the spinal fluid. The lumbar puncture Liz had showed two sorts of cells in the spinal fluid, one sort suggesting malignancy and the other suggesting infection, either viral or bacterial, and this still hasn't been resolved. They still want the CT and MRI scans but because no one will believe the pain it causes Liz when we tell them, they resolved to try again yesterday. They upped the dose of sedative enormously and put her on as much morphine as they felt was safe and Liz still only lasted about 4 minutes. The two MRIs they need take half an hour each! (This did provide three examples of the quality of the care Liz is receiving. Firstly, Liz had specifically requested, and got, the radiographer who was so good with her on Saturday. He, too, protested when he saw it was Liz, saying he could see little point in subjecting her to the pain of even trying. He also pointed out that a general was probably the only answer. The second was when the doctor (known as the Nice American Doctor, or NAD for short) who had been seeing Liz all day and preparing her, and who could see that Liz was terrified of the scan, volunteered to walk down with her when the time came. Then the third example. When the time did come the NAD was tied up with another patient and had to cry off, but the ward nurse phoned her and said, quite forcefully I gather, “you can't promise a patient something and then not do it!”. The NAD came, and Liz was very grateful.) Anyway, the next plan, hastily cobbled together when that attempt failed, was to go ahead with the CT scan (which was done with no problems at all yesterday evening), and there was a slot last night when the MRIs could have been done under a general anaesthetic, which they booked. I girded my loins for a long evening as I had no intention of coming home until Liz was awake again. But then the NAD came in and said that after a little consideration, the medical team were not entirely happy with the idea of Liz going down for a general at a time when all the people who were familiar with her case had finished for the day, with her being cared for by a team she didn't know and who didn't know her. The NAD had been particularly caring of Liz all day, and we thought it was rather sweet, but the cynic in me wonders if there was some other, medical, reason why they didn't take the chance to get the scans they wanted when they will now have to wait until Friday when a day-time slot is available. So, today the current plan (and I use the word “current” advisedly) is another lumbar puncture, presumably to get something to compare with the previous results. (Someone pointed out last night that, in normal circumstances, going in for a lumbar puncture would provoke much sympathy. But because of what Liz has gone through, we dismiss it as a relatively pain-free exercise that will just get done. Poor Liz.) Then, hopefully, on Friday they will get the MRIs done with Liz under a general anaesthetic. Lots more prayers and fingers crossed please. |
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Her sense of humour hasn't left her.