May 2010 May 1st DAY149 – May21st DAY 169 Over the bank holiday weekend at the beginning of the month we went to Brighton to stay with friends and while there had a look at Brighton Canoes to see what sea kayaks were available. We particularly liked the Easkey with 2 sealed hatches and skeg and have now gone a step further and ordered two of them! They are to be delivered to Poole (Bournemouth Canoes) which is part of the same company. This is most unusual for us – we never buy anything new! I feel though that we rather deserve it as kayaking in the Outer Hebrides was on the agenda just before I was diagnosed and so it had to be postponed. Our old kayaks are slowly disintegrating so it is time we moved on. Some time ago, shortly after the transplant, when I suggested that we would like to go kayaking in the Scilly Isles in May or June, the doctor I’d spoken to looked taken aback and exclaimed, “You won’t be fit enough to kayak in May or June!” So we will see. May 5th Set off up to Carlisle by train to meet up with a friend and spend a week in Scotland in her camper van and staying in another friend’s house. Train travel isn’t really recommended due to the risk of infection from other passengers but I made sure I had a seat to myself and the journey went well. I was a little concerned about crossing London carrying a heavy bag (you need waterproofs and wellies for a week in Scotland in May) with a connection to catch but it all went well and we met up and had a week of superb weather. We were staying in a very quiet coastal area, the sea was a calm Caribbean blue and it was like being off the planet for a while – very good for the soul. Even the short run-in with the Police didn’t detract from the week – no I promised I wouldn’t mention it. Generally we spent the time exploring the shoreline but one day we set off along a rough track on mountain bikes. There were 6 miles of track and a further mile to walk so a round trip of 14miles. I have to admit to a fair bit of pushing uphill but it was a great day out. The return journey through London coincided with rush hour – and at one point I thought I’d have to get off the underground to breathe! I was now carrying a small tree as well as a heavy bag so that didn’t help! At last, unscathed, I reached home. The garden was crying out for attention but I had to first of all prepare and send off some paintings to an exhibition in Scotland. Their weight took them into the higher price bracket but I had put so much effort into them that I decided to send them anyway. If they don’t sell I’ll be a fair bit out of pocket but you have to try these things!. I woke up in a sweat in the middle of the night following realising that I hadn’t stuck a fragile sticker on them either. Memories of an old Blue Peter film showing what happens to parcels in the post did nothing to allay my fears. So back to the gardening. By the end of the day I feel tired especially if I have been moving large tubs and rocks around but I reckon it’s all part of my back to fitness regime. I had another 2 days climbing, one with a novice friend and another with my climbing partner. I’ve managed a few more easy leads but have also struggled on routes that I would have found straight forward in the past so a long way to go yet. The good news is that for the last few weeks, other than not being up to the mark as regards climbing and walking/cycling uphill, I’ve seen myself as “normal” i.e. not below par. It’s true that I still need a lot of sleep at night and find it a struggle to even wake up at the time when I used to be at work in the morning but am not sure if that is the AA or just a downhill slide into a more slothful existence.
I feel that I have to apologise to my followers for the huge time gap since my last blog. However, this is actually good news as my excuses are that a) the weather has been too good and b) I have been too busy doing “stuff” to write it up!
I shall continue to write it in monthly chunks but it is actually September the 27th when I am writing up the last half of May! For that reason the information will be correct but the timings may not be exact.
May 22ndDay 170 – May 30thDay 178
The kayaks duly arrived and after picking them up we were mad keen to get them on the water. It was a blistering hot day. I got changed into my cozi and we just had to make a quick thigh brace adjustment to the boats before putting them on the top of the car. Although I thought it would be a two minute exercise, lining up 4 pieces of drilled plastic and threading a bolt through to be secured with a nut, because it was being done blind – by feel only, it took rather longer. In fact it took nearly an hour.
I had been aware of my back getting hotter but was reluctant to go and apply sun bloc as this would make my hands greasy and my task almost impossible. I didn’t usually have a problem with sunburn, tending to tan gradually but that afternoon I realised that there was a very good reason why the docs had told me to use Factor 50 sun bloc; through my treatment/ drugs I was now much more susceptible to burning ...and that’s what I did! My back was scarlet and painful and worst of all was impossible to hide from the doc’s scrutiny. I was severely reprimanded by way of a cautionary tale of a woman patient at the same stage of recovery as me who through being sunburned contracted graft-versus-host disease and could not be saved – she died. The good news was that in my case it didn’t trigger gvhd but I felt very sheepish as each of the four consultants/ doctors lectured me on the subject when they saw me.
The doctors looked again at my chimerism. Full donor chimerism means that 100% of bone marrow blood cells are of donor origin and this is the goal. However I have only partial chimerism at the moment ie I am still producing cells of my own so that 90% of my bone marrow and blood is of donor origin and the other 10% are still being produced by me. To increase the percentage to 100 I may need to have infusions of donor lymphocytes. (These would be taken from the extra stem cells which were harvested from the donor at the time of the transplant).
In order forthe lymphocytes to have a chance to act without being rejected it will mean that I have to come off cyclosporin, the immunosuppressant drug. This will need to be done gradually and when I am off it completely then I can start to have the lymphocyte infusions. Initially these will be given in small doses and will be administered at 6 weekly intervals until the chimerism rises to 100%
Anyway, the kayaking was good. We only went for a 3 mile trip and found the boats to make quicker progress through the water but be a little trickier to manoeuvre and be more unstable than our old ones.
There was good news too on the painting front. Two of the three paintings I had sent to the exhibition in Scotland were sold. Complete strangers rated my work! Things were moving on!
Wednesday, 14 April 2010
April 2010
April 1st DAY 119 – April 13th DAY 131
An old school friend whom I hadn’t seen for around 20 years came down to Dorset for a few days and I joined them as resident guide. They were quite keen to go fossiling and one of the boys had his sights set on finding a large ammonite. The first day was damp with a strong chilly wind blowing and we picked our way along the beach, turning over likely rocks and picking up one or two smaller ammonites and some iron pyrites and a few belemnites. Fortunately we had already left a car at our destination because by the time we reached there we were all very cold and walking back into the wind and rain would have been less than pleasant. I find these days that my circulation is not so good and although I was wearing a pair of gloves, my hands got very cold and I suffered painful hot aches. I spent that evening wrapped up in front of the fire feeling that I’d overdone things particularly with the adverse weather.
However the next day was brighter, without rain and we continued the ammonite search at a different venue. This time there was success! Half of an ammonite (diameter 45cm approx) was found. It probably weighed about 50lbs so was not very easy to carry particularly as it was found on a boulder beach some distance from a good footpath. After a struggle with all of us trying to lend a hand, my friend and I left it to her sons and she and I carried the other fossils weighing a mere 25lbs or so each, back to the car. I nipped home for our sack trolley and we completed the task with no major damage done to our backs!
A couple of days later we had a full house – all 3 sons plus one wife, one girlfriend and one brother-in-law arrived for Easter. As I’d spent Christmas Day in hospital and missed out on the festive jollity I’d asked everyone to come again for Easter. It was great to see them all.
On the Tuesday after Easter Nick and I drove up to London to see the Van Gogh exhibition, stayed over with number 3 son and then spent the following day at the British Museum. Although well shod for the trip, hours of walking on hard pavements took their toll and left us feeling pretty exhausted.
The following day I drove the usual 3 hour round trip to Hospital S. Once again it was frustrating not to receive the results of my blood test before leaving. This meant that the discussion with the doctor was with reference to results which were a fortnight old. The doctor was happy with my progress with my blood being 90 + % donor and my bone marrow being 98% donor. Because my neutrophils are at a reasonable level (2.7 – the normal range is 1.8 – 7.7) there seems now to be less of a chance of bacterial infection but with a lymphocyte level of 0.4 (the normal range is 1.0 – 4.8) I am still vulnerable to viral infection. At Easter we had an unexpected visit from a family who had just had chickenpox and this could have been dangerous so it was lucky that the contagious period had passed. The doctor also voiced mild concern about my attending the Aplastic Anaemia National meeting as I will be in a room full of people who might be carrying viruses!
After the AA national meeting my plan was to meet up with a friend and stay with her at her holiday cottage in Scotland for a few days which would mean that I would be unable to attend my next fortnightly meeting at hospital S. I suggested that I could come again the next week so that the maximum gap between appointments would be 2 weeks. However the doctor said that a 3 week gap would be fine – so more progress there! As it turned out my friend was unable to get the time off so unfortunately the trip is off. I was rather looking forward to a few days away.
The following day I felt unusually tired and ordinary activities seemed to take a lot of effort. I wondered if I was coming down with something and was mildly annoyed at my lack of energy but then thought over the activities of the previous week and decided that after all it wasn’t so surprising.
Still not allowed to go to the gym I have got into a habit of morning exercises at home to build up some strength and flexibility for my return to climbing which, given a partner and some suitable weather, I intend to try out very soon.
Today a friend and I went for an eight mile cycle. It was mainly along an old railway track so not very challenging but there was one steep hill and I was very pleased to make it to the top without getting off – mind you the old heart was beating very fast by that time.
April 14th DAY 132 – Apri 30th DAY 148
I can’t believe it is over a month since I last wrote my blog! Obviously I’m having too good a time !
On the 17th I attended the National Meeting of the Aplastic Anaemia Trust in Walsall. As this is such a distance from Dorset I drove up the day before and stayed overnight. Nick wasn’t too fussed about coming and had other things to do so stayed at home. I didn’t mind and was looking forward to the challenge of the long drive on my own.
Unfortunately the night before I was due to set off I had an email from Katherine to say that she would not be able to attend as her daughter who was to have driven her was ill. This was disappointing especially as Janet was unsure whether she would be able to attend either.
The journey was fine with of course the usual nose to tail hold ups on the approach to Birmingham and I settled into the Premier Inn which was a mere 10 minutes from the AA venue across the M6. I checked it out to make sure I would find it easily the next morning. I had hoped to meet up with Bryony and Anna from the Aplastic Anaemia Trust that evening but got a message from Bryony to say she would not be arriving till late and that Anna was coming up on the Saturday.
The following morning I set off in plenty of time but took a wrong turn at the roundabout and ended up headingup the M6! Once I’d turned round at the next junction I found myself with just twenty minutes before the start of the talks. There was a reception room with coffee etc and there was a buzz of chatter. Altogether there were around 80 attendees, most patients having brought friends or partners. As everyone had the same kind of name badge, it was difficult to tell who were the patients . I joined a small group and had just introduced myself when Janet appeared. She and her husband had managed to come after all!Shortly afterwards we were called to our seats for the first talk which was given by Professor Marsh. She described the condition and gave details on the diagnosis. This was followed by a talk by a specialist nurse highlighting the problems of living with Aplastic Anaemia. There were opportunities for questions and Professor Marsh kindly made herself available in the break for further questions. From the nurse’s talk and reading between the lines of different questions it would appear that a lot of AA sufferers have a very difficult time. I did at one point put up my hand to put forward the view that at least for some people i.e. me, the experience was not too bad and had very many positive aspects. In the end I didn’t press to have my say, worried in case it sounded smug. I just thought that if there were people present, new to the condition, that they might come away from the day feeling rather down with what was facing them.
As tends to happen, the talks had run on a little so the lunch break was a little shorter and this cut down the time available to chat to other sufferers. It did mean though that I got to know more about Janet’s experience of AA.
The afternoon sessions began with a lively talk from Anna on fundraising and working for the trust. The last session was on the latest research into AA. This was rather technical, balanced with amusing slides and seemed to indicate that future treatments are to be more tailored to the individual.
We were encouraged to fill in evaluation forms and there was further opportunity to chat to people and buy merchandise, collect fundraising forms etc.An annual quiz is organised with people in different areas taking part on the same night (October). This sounded do-able so it is my intention to organise the quiz for this area ....so watch this space!
Within quarter of an hour or so of the last session most people seemed to have drifted away and thus the day ended. It was a pity that there had been no scheduled time to talk to others with a similar experience or indeed no way of identifying which people had been involved or were to be involved with bone marrow transplants. I feel that talking to others with a similar history would have been really useful and felt it was the loss of a great opportunity.
April 20th
I went to Portland climbing with my old climbing partner. We went to a sheltered crag which was also a suntrap and therefore very warm. Prior to having AA I was leading (some) climbs at sport grade 6A but today was toproping grade 4’s.
Leading is a significant step above toproping as there is the risk of falling some distance though of course your fall would be arrested by the belayer before you hit the ground. Toproping on the other hand is very safe as, should you fall, you merely sink into the harness and are held at the same level by the belayer.
The first climb left me a little breathless which was unexpected as climbing is a series of slow moves and not aerobic. My arms lacked strength which was not surprising but my nerve seemed to be fine. After struggling on the first climb I was not sure how many more I could do but as I warmed up and the day progressed I seemed to fare better and even managed to lead a climb by the afternoon. Being back on the rock at whatever level was very good for morale and felt like the beginning of a new phase. I have still got a long way to go as regards strength and flexibility but at least it is a start. Now I am keener to continue with my daily stretching and strengthening exercises as there is a feeling of purpose.
With the longer evenings and warmer days, the garden beckons but this is an area of potential danger for the Aplastic Anaemia sufferer with risk of toxoplasmosis and bacterial and fungal infection. So when I set out to work in the garden I make sure |I always wear gloves and when forking over compost I even wear a mask. Exposure to strong sunlight brings with it a risk of graft versus host disease so as the weather improves I have to slap on the factor 50.
My blood results are steady with a HB of 11.7 and platelets of 222. I had hoped they would rise a little quicker but at least they are not falling. The white blood count is 2.8 and neutrophils 1.9 the good news is that my hospital appointments have been extended to once a month! I will of course still have to have my lung antibiotic by nebuliser once a month at my local hospital. Another breakthrough is that the docs have given me the go ahead for a (short) trip to France by car so as soon as we get our passports renewed we can start to plan that.
Wednesday, 10 March 2010
March 2010
March 1st DAY 88 – March 10th DAY97
When I saw the consultant I didn’t like the way he was so pleased that I was putting on weight. For the last 3 months I’ve been able to eat as much as I want without putting weight on but it looks as if the honeymoon period is over and I’ll have to cut back on the butter and chocolate.
I thought I would ask about joining the gym and was pleasantly surprised when he exclaimed “Surely! Surely!” However I had misheard him and what he actually said was “Scarcely, scarcely!” Apparently aerobic exercise tends to set people back. Well I guess I’ll have to find other ways to exercise. I called in at the local sports centre to find out about pilates classes so may try that or yoga. Certainly I feel a bit creaky and could do with working on some flexibility.
I went for a 3 mile walk along the coast and although I was fine on the flat, I did have to stop to admire the view on a steep climb up from the beach. After a very short pause I was fine to carry on again. We also went for an 8 mile cycle ride at the weekend in a bitterly cold easterly breeze. Most of the route was fine though I did struggle on a couple of hills but only had to get off the bike once.
It was decided that it was best if I had my Hickman line removed so today I had that done at my local hospital. It involves a local anaesthetic and a bit of cutting with scalpel and scissors and a couple of stitches to finish it off. Thankfully this line came out with less trouble than the last one though it too had settled in to becoming part of me and needed a bit of persuasion to be removed.
We have begun to think about holidays and short breaks and since foreign travel is out of the question it looks as though Scotland will be featuring strongly with 5 trips already planned. Hopefully one of them will take in the ascent in Assynt of Suillven and I have no doubt that a bit of kayaking will be fitted in somewhere too. All being well I should also manage some rock climbing on Lundy in September. Plenty to look forward to and in the meantime we are off to Cornwall this weekend so no doubt will do a bit of walking on the coast path.
March 11th DAY 98 – March 31st DAY118
I’m amazed to find that it is 3 weeks since I last blogged! I put this down to becoming busier and busier as my energy levels increase and the hours of daylight lengthen. I do become tired by mid evening and am still sleeping around 9 or 10 hours a night if I do not set the alarm.
The trip to Cornwall was, as always, a tonic with plenty of coast walks and a bit of rock scrambling. Whilst there, I also bought some more picture frames from my supplier and so have been doing a bit of painting. The weather has been variable at best, wet at worst so I have kept busy with curtain making when not painting.
One day when the sun did make an appearance I went out for a 12 mile cycle ride. Some of the hills were a challenge but I only had to dismount and push on one of them. Another day I went out cycling along the seafront but it was very blustery with a contrary wind so I decided to call it a day after 6 miles or so.
Since I spent my childhood in the west of Scotland, I virtually have webbed feet. I also have a friend who is happy to walk in all weathers so we have been out in drenching rain and wind walking along the coast, watching the grey sea crashing on the shore. One of the walks was up a steep cliff and after a couple of miles a descent to the beach with a view to a hot chocolate in the cafe. I rather surprised myself with how well I managed the cliff climb, stopping only briefly to “appreciate the view”. Unfortunately the cafe was closed - annoying timing as there were still people inside finishing off their drinks. As we turned back into the wind and rain we opted to return along the pebbles on the shore rather than climb up the cliff again. However trudging along the pebbles turned out to be rather more tiring and I was very pleased to reach the end and see the car.
As the gym is still out of bounds and the next batch of pilates classes don’t start till next month, I decided to start some exercises at home. This has become quite a routine as soon as I get up in the morning with a mixture of sit-ups, stretches, pilates and yoga for three quarters of an hour while listening to radio 4. I also had a bit of instruction from son number 1, who is in the Royal Marines, on techniques for press ups, the aim being to build up upper body strength for my return to rock climbing. Having struggled initially to complete 10 press ups, I can now manage 30 so am encouraged that progress is being made. An old school friend and her sons were here for a few days, visiting and keen to do some fossiling. I was pleased to find that I could confidently rock hop along the boulder beach. A year or so ago I felt I had lost my sense of balance for this kind of activity and was much more cautious and slow on rough terrain.
On the 15th March I had my “hundredth day” bone marrow biopsy. It turns out that the hundred days is actually quite an arbitrary length of time but is standard so that the results of bone marrow biopsies can be compared across Europe. I was offered entenox for pain relief but declined. I did find that the aspiration (removal of fluid) was slightly more uncomfortable than before. This was because there were more cells so the fluid was thicker to draw up into the needle. The trephine part of the biopsy though was fine with a 1.5 cm sample of bone removed – basically a core sample is removed using a hollow needle with a circular cutting face. All this was carried out in a four bedded day ward and took around three quarters of an hour to complete.
I was shown the bone marrow fluid on the slides which clearly indicated an encouraging number of cells. The doctor who carried out this procedure commented on me having managed to keep my hair. I said that the only problem was that it was coming through grey and that I was going to try to colour it, testing a small area first. However she said the consultant would not agree to that as the dye could cause graft versus host disease so that for the time being I’d have to go grey gracefully. The non aggressive hair dyes would be alright but then they wouldn’t cover the grey. It is a bit disappointing to go grey when you still feel as if you are in your twenties!
The results of the biopsy were available 10 days later and these indicated that my blood was now 98% my donor’s ! I did have a test to see whether my blood group had changed. (My blood group is B positive and my donor is A positive and at some point I will become A positive because it is mainly the A positive cells which are manufacturing the blood and platelets) However there was a lab error with labelling so I don’t know yet what the outcome for blood group was.
My consultant was pleased with progress but was still concerned about the possibility of graft versus host disease and advised that I should wear goggles when cycling (visions of Toad of Toad Hall!) or even a full face mask! I was also told to use sun bloc when out in sunshine – even in chilly March. I have to say it all seems a bit over the top!
I asked whether I could redeem a massage voucher received last year but he suggested I leave it a bit longer as the pressure and friction on the skin could set off graft versus host disease. The good news was that he asked whether I had been out rock climbing yet which I took to mean that it was alright to do so. So as soon as the weather settles I shall be out on the rock
At hospital S it takes a longish time for the blood results to come through so I have usually finished my session with the doctor/consultant before they are available. This means that the results I do get are those from the previous visit and so are a fortnight out of date. However hospital D is speedier with their results and when I was there for my monthly pentamadine (Lung antibiotic taken prophylactically via nebuliser) on the 29th March my blood levels were found to be :
HB 11.2 WBC 3.5 Neut 2.7 Platelets 214
The haemoglobin and platelets are within the normal range but still towards the lower end. The neutrophils and White blood cells are below the normal range as yet.
I was beginning to feel that my results had plateaued with there being little significant improvement since the beginning of February but it looks now as though there is an upward trend.
I am not quite at the level of my new acquaintance Katherine from Wales. She rang me up having read my account of my story to date in the Aplastic Anaemia Trust Newsletter. Her treatment followed a similar pattern to mine – failed ATG followed by a bone marrow transplant from an unrelated donor. She had her transplant in September 09 and now has an HB of 14 and platelet count of 300!
There is to be a national meeting of the Aplastic Anaemia Trust Support Group in April in Walsall with a talk being given by Professor Judith Marsh the leading expert on Aplastic Anaemia in Britain, as well as news on the latest research into the condition. It will be an opportunity to meet fellow sufferers and put faces to names I have encountered through the Trust. Of course I met Professor Marsh on a number of occasions after my diagnosis when I went up to London for consultations.
Katherine and I have arranged to meet in Walsall and I am hoping my other Aplastic Anaemia friend Janet will come too as I have only been in touch with her by e-mail up till now.
My hospital appointments are still fortnightly at Hospital S but of course with my Hickman line removed I no longer have to attend for its weekly flush.
I spent a lot more time sorting out boxes etc in the loft. I also carried the top of a very solid drawing table up there on my own which maybe wasn’t such a good idea as I nearly overbalanced with it at the top of the stairs. I also organised my art materials, books, paintings and paper into some sort of a system so by the end of it I felt really pleased.
Because at the moment I have no particular stress in my life, I sometimes get feelings of real contentment creeping up on me. Previously I always seemed to be trying to put a quart into a pint pot, rushing around, filling every spare minute so that I rarely sat down. Now, although I always have a list of things I want to do, my life is much more leisurely. If something doesn’t get done to-day there is always tomorrow. I suppose this is how some people feel when they retire. In a strange way time also seems to pass more slowly. There is an ebb and flow to the day and when it gets dark, around five o’clock I light the fire, prepare the meal and settle down for the evening knowing that I am not rushing out to do anything. Now if this was to be a permanent state of affairs I think it would probably get me down, feeling that I was only living half a life. However I thoroughly expect to be back operating at the old pace even if that time is still some months ahead. So I think of this present situation as a finite time of enforced ease and tranquillity and look for the advantages it offers and appreciate the opportunities it provides for my life to take a different tack. From time to time I feel the frustration of not being able to take up my outdoor activities, nor travel abroad etc but there is no benefit in thinking of the things you cannot have. Instead I concentrate on those things I never had enough time to do in my old life like progressing with tasks around the house, having more time to read, paint etc. My Thursday visit to the Hospital S stretched out to three and a half hours because I needed more tablets and we had to wait for an hour and a half at Pharmacy because it was lunchtime as well as the department being understaffed. By the time we had gone to one shop and driven home it was 5 o’clock. There was some good news though – I now only have to attend Hospital S every fortnight and will go to my local hospital during the week in between to have my line flushed. This will take only a few minutes and will allow for bloods to be taken if necessary. Also once a month the local hospital visit will hopefully coincide with my nebuliser (pentamadine) appointment. Another alternative was that the line could be flushed by the district nurse but the doctor felt that the district nurse would not really have had much experience of lines. This was the case on the one occasion when the district nurse did come. She had to keep referring to the notes and asking me about the procedure. The doctor reiterated that it was still early days and that I must still heed the restrictions although all my levels are good. Some were slightly down from last week but a little fluctuation is expected for some time. After we got home I received a phone call to say to alter my cyclosporin dose so I am now on 100mg night and morning.
At last on Friday (5th Feb) I managed to get around to painting! Visits from friends and phone calls shortened the time available but at least it was a start. One of the phone calls was from my sister who had intended to come down from Scotland to “look after” me straight after my discharge from hospital. However the heavy snow falls in Scotland and the Midlands meant that her visit was delayed. Although I do not need to be “looked after” we decided that she would still come down and planned the visit to start on Feb 12th. On Saturday she rang again to say she’d been worrying about the visit and the fact that she had had colds off and on all winter despite having had the double flu jab. She put forward the possibility that whilst she felt fine at present that she may get a cold when she was here which would be bad news for me and would mean that she would have to leave immediately to drive the 500 miles back to her home in Scotland. Although flying was a possibility one of the reasons for the visit was to bring down some things which could not be posted and to take her very heavy Christmas present back with her. We spent some time discussing it and eventually decide to postpone the visit till she had had a significant interval without any sign of a cold. It was very disappointing as we had already thought of lots of things to do during her visit but when I asked myself, “What would the doctor say?” I knew the answer would be “Don’t risk it.”
Nick and I went out for a cycle ride – probably about 7 miles or so. There were no hills to speak of and no wind so it was pretty easy going. I’m now thinking about going to a yoga or pilates class. There is a local climbing meet next Sunday and I may pop along to that but only for a social catch up of course.
February 9th DAY68 – February 22nd DAY81
The gap between my blog posts seems to be getting larger. This is down to a mixture of things: a) Being busy b) Hospital appointments (where I see a doctor) being down to once a fortnight c) No real changes on the health front. d) The delay in the blood results coming through at the hospital meant that I had left before they came through so couldn’t report on them. People ask me if I have a little snooze in the afternoons or if I find I get tired but this is not the case. I do find that I sleep on average about 9 or 10 hours per night with maybe 2 or 3 times when I come to, before quickly going back off to sleep again. I never was a lark so don’t leap out of bed at dawn but tend to read for a while – I’m trying to read 4 books at present so alternate between them. (one of them is very interesting – called Why Do People Get Ill? and is written by two psychoanalysts!!) As the day progresses I seem to have more energy though I haven’t really been doing much physically of late apart from walking. The weather has been cold and rather wet and I have also got involved with making blinds and curtains. Last week I went to have my eyes tested and was directed to an area where an assistant would do some tests prior to my appointment with the optician. When I went into the area I found that the assistant was absolutely dripping with the cold, coughing and sneezing. It was a split second decision whether to go or stay but in the end I stayed as I thought it would be too rude to go abruptly and would probably be misunderstood by the staff. I therefore watched with interest to see if I would come down with a cold – or worse! During the test, the woman’s face had been very close to mine though I did try not to breathe! As it turned out there were thankfully no repercussions. Was I just resistant to this strain of cold or was my immune system really not that low?
It is certainly getting more difficult to stick to the restrictions laid down by the hospital while I am feeling so fit and I must confess to being guilty of nipping into a small (emptyish) supermarket for one or two items, avoiding people as far as possible of course. I might also have erred in one or two other minor ways!. When I had my next hospital appointment I saw a consultant I hadn’t seen before and it was in my mind to ask his views on the possibility of going to the Scilly Isles in the summer with a bit of kayaking thrown in. It was my view that eventually someone would give me the answer I wanted. However when I asked him if I could ease up on the restrictions – like going into supermarkets, he immediately said “Oh no – it is still early days yet,” and although there would seem to be an initially successful graft that it could still fail. After that I decided not to bother raising the issue of the Scilly holiday.
I have now been given a date for my bone marrow biopsy (15th March) which will give an indication of the level of improvement. This test is administered 3 months after the transplant and is accompanied by other tests to check on organ function. This is all carried out around the 100 days mark.
There has also been talk of taking my Hickman line out as its disadvantages (a potential source of infection) have to be balanced against the decreasing need for its use for taking bloods and receiving treatments. I have to say I would prefer to keep it in a bit longer as I prefer it to having bloods taken via cannula but I think their argument wins. I just hope it comes out a little easier than the last one!
This week I also received notification of the Aplastic Anaemia Support Group National Meeting which is to be held in the Midlands in April. It is a long way to go and would involve an overnight stay but it would be interesting to meet fellow sufferers and hear about the latest research.
February 23rd DAY82 – February 28th Day 87 I had my second dose of pentamadine (prophylactic anti-biotic for lungs) this time at my local hospital. The room was bigger than at hospital S but otherwise the procedure pretty much the same. Firstly I had some ventilin to open up my airway and then started on the pentamadine, breathing it in through a tube of about 2.5cm diameter. The mouthpiece was a slightly more user friendly shape but I still managed to dribble. For some reason the mixture seemed to be stronger than before and initially I felt rather sick but persevered. I did wonder whether I had the right strength of drug as it burned the back of my throat and in fact I had a raw throat for a few days afterwards but I’m sure it did me the world of good!
I have started to do a few simple exercises in the morning with light weights and some stomach crunches etc but think I will ask at the next visit if I can go to the gym. At our local gym there is a culture of wiping down the machines before and after use so that the risk of infection should be minimal though it would probably be an idea to avoid the steam room and sauna
January 1st DAY29
Woke up quite late to a sunny cloudless sky - quite a change for New Year's Day. I had my anti-sickness tablet in the hope of avoiding nausea when I took the handful of pick and mix morning tablets. It worked!
When I showered and washed my hair, I once again thought back to my admission to hospital, thinking it would be a long time before I would need shampoo again. Now I would have to make an appointment to have another haircut!
I set about doing a bit of dusting and cleaning and beginning to put away the things that had been brought back from hospital and felt the usual sense of achievement you get when work produces a visible impovement.
A couple of Happy New Year phonecalls then we felt we couldn't ignore the beautiful weather and so set out for a coastal walk. Assuming that all cafes would be closed I made up some hot chocolate, packed some Christmas cake and some fruit and headed out. We could not believe the number of people at our chosen destination - there must have been several hundred people within a 500m radius of the cafe which was open.
We headed off for a quieter stretch of coast and I nipped out to the boot to get the hot chocolate etc only to find that I must have left the basket in the kitchen at home! And of course there was no cafe in sight.
After helping out with a family who had a puncture and problems removing the wheelnuts, we set off uphill. I fairly quickly realised that I wasn't quite back to full fitness but I did pretty well and the wonderful views gave me a good excuse to stop and look around. After half an hour we headed back to the car and headed home where we drank the hot chocolate and lit the fire. I cooked the ham I'd prepared earlier and after the meal we settled down to a bit more television viewing. I updated the blog and realised that now that daily changes were less likely, I could probably reduce the blog posts to two per week, especially now that I have more to do with my time!
Jan 2nd – Jan7th DAYS 30/35
Son number 1 and his wife along with son number 2 and his girlfriend were coming for the day on Saturday. For a short time the whole family would be together. However son number 2’s girlfriend had now caught the cold he had got rid of which meant she could not come into the house. I chatted briefly to her across the road and then she went into town to shop. It felt dreadful to see her excluded and I had suggested that perhaps we could both wear masks. However she has inside knowledge in the spread of diseases as that is her area of study and she said that would not be a good enough barrier.
Once the decision was made I set to a bit of home cooking – a real pleasure after my restricted diet in hospital. Some other friends arrived with their new babyand later on we played the usual Christmas board games so went some way to make up for Christmas Day.
The next day we went into town avoiding crowded areas to buy a few things we needed. Afterwards we went for a walk beside the harbour and up on to the cliffs above the sea. The wind was from the north east and was bitterly cold but it was still good to be out watching the waves.
January 4th DAY32
An early start for our first outpatients appointment at Hospital S Thankfully the traffic was free flowing and we arrived with a few minutes to spare. However we waited for an hour past the appointment time before a nurse approached us about taking blood. She would have to find a vacant room and then the bloods would be sent off to the lab. In the end I had my appointment with the consultant before the bloods came back. It was now nearly 2 hrs after the appointment time!
Although everything seemed to be fine with me physically, I did get a ticking off about going into a supermarket – Nick was told that shopping was his responsibility! And there were more restrictions. I had thought that now my neutrophils were rising towards a normal level that I could ease back into a normal life. However I was told that neutrophils were only part of the story and that my immune system would be vulnerable for some time to come. I would have to maintain a neutropenic diet although I was no longer technically neutropenic. There was to be absolutely no contact with anyone with a cold, cough, headache etc as I would be straight back into hospital if I contracted a cold. I was not allowed in crowded places and to be very mindful of touching handles and handrails when I was out. Some exercise was allowed – it’s a pity it was too cold yet to do much outside other than walk. I was still not allowed to drive yet but short trips may be possible soon. Certainly when we left I still felt as though I must continue to see myself as being in quarantine.
There were to be minor adjustments to my medication which meant a visit to the pharmacy.There was a further 45minute minimum wait so we went off for coffee and a bite to eat. By the time we left the hospital it was 4 hrs since we had arrived. Perhaps next time the system could be streamlined a bit.
The next morning I found that there was a message on the answer phone to say I needed to phone the hospital urgently as my cyclosporin level was rather too high and so the dose had to be reduced. I was told that this communication by telephone might also happen in the future as some of the blood results take a while to come through and adjustments might need to be made
On the 6th January I received another call from Hospital S to say that due to the very poor road conditions around S, they would see if, instead, I could go to my local hospital for my Thursday check-up on the 7th. Not only that but a further blood test had come back showing a higher than acceptable reading for EBV - Epstein Barr Virus which can cause glandular fever and at its most extreme, cancer. It can also be present without showing any major symptoms.
This new development meant that I would need 4 weekly treatments of an antibody called rituximab. Thankfully these treatments could be administered at my local hospital.
It was great to go back to Hospital D and see the old team again after 6 1/2 weeks. The bloods were taken, dressing changed on the Hickman line and the rituximab transfused. Because it is a non-human product, it is quite common for reactions to occur. To minimalise the risk of this, some pre-med (hydrocortisone and piriton) is given and the first dose is given very slowly over 4 hrs. This worked for me as I had no side effects apart from being a little groggy from the piriton. So for the next few weeks it looks like 3 days per week at hospital –
January 8th DAY36 – Jan13th DAY 41
Jan 9th Had an outing to Lyme Regis to swap a Christmas present. Lyme is always beautiful at any time of the year and a pleasure to visit. We had lunch out and a wander around the town which was fairly empty because of the low temperature. The intention was to have a walk along the esplanade but a combination of parking time running out and the cold meant that we merely drove along the esplanade and looked out at the Cobb from the car then headed home with the sun setting over the sea.
The next day we did a few minor chores around the house and had a bacon sandwich. I still don’t quite understand how or why the nausea appears in the morning. Whether it is to do with the mix of tablets I have to take I’m not sure but it always seems to improve if I have something to eat. This is probably a good thing as I don’t tend to have much of an appetite in the morning and would otherwise quite happily go on until lunchtime.
We set off before lunch for a 3 mile walk along the cliffs. This time I did remember to take the hot chocolate with me! The wind was from the north east and I was absolutely frozen. I had been out in the garden before we left and was not cold at all, prising the poor terrapin from his ice filled pond to relocate him to the shed. However once we got on top of the cliffs the wind was positively Arctic. By the time we reached our destination the hot chocolate was very welcome. I’m not sure whether I felt the cold more because of my condition but was very glad to get back home and into a hot bath.
Monday 11th started early with a trip to Hospital S though I have to say that the one and a half hours seems to shrink the more often the journey is travelled. It was slightly annoying to find that we arrived on time but had to wait for an hour and a quarter before we were seen. It seems strange that I am not allowed to go into a supermarket but that I’m expected to sit in a busy waiting room for over an hour! Anyway, eventually we were in and the bloods taken. I had the usual checks, heart and lungs sounded, abdomen palpated, ankles checked for oedema, asked about rashes and skin on hands checked for any signs of problems. All was fine with the only problem being the continuing diarrhoea which was just to be monitored. The consultant looked in and said that one of the antifungal medicines posaconazole could be stopped (Woop! Woop! – nasty tasting liquid) and the cyclosporin adjusted because of this.
My blood levels were HB 10.4 WBC 2.6 Neut 1.7 Platelets 167.
Further details regarding my quarantine were given out – no vacuuming, no dusting, no turning over earth (in this weather – you must be joking!) as well as a reiteration of the restrictions regarding public transport, supermarkets etc There was a slight indication that it might not be too long before we were down to one trip to Hosp S per week which was good news. I asked about the Epstein-Barr virus reading and it turned out that it was only just above the acceptable limit and that even the first treatment I had had at Hosp D would probably have decreased the level. This trip to the hospital lasted just over 2 hours so an improvement on last week.
Made an appointment for a hair cut - didn't think I'd be doing that at this time!
Jan 14th DAY 42 – Jan 18th DAY 46
Just as well the appointment times are flexible as the trip took us 2 ½ hours instead of the usual 1 ½ hours, mainly due to traffic delays just after setting off from home – an hour to go 10 miles. This appointment to see the same group of docs and specialist nurses was at a different hospital but in the same city as Hospital S due, I think, to lack of space at Hospital S on a Thursday However the hospital was easy to find and eventually we managed to find a parking space in a still very icy car park.
I had my bloods taken and the levels showed platelets at an amazing 212! – well within the normal adult range of 140 – 450. Neutrophils were 2.6, also within the normal range of 1.5 – 8.0 and haemoglobin was 10.7 so just below the normal range of 11.8 – 14.8 so all in all showing very good improvement.
During the routine examination it was discovered that I had a rash on my torso so was prescribed some Betnovate cream and Hydrocortisone cream to be used instead, should the rash appear above my neck line. We got these items from Pharmacy on the way out and paid £14.40 for them. I had applied for a medical exemption certificate but this had not yet come through. This is a grey area regarding a Bone Marrow Transplant for Aplastic Anaemia but I qualify because I have received a cancer treatment though of course the condition is not cancerous. I was told that when the certificate arrived I could have the cost of the prescription refunded as long as the certificate covered 14th Jan. The certificate actually arrived a couple of days later with the rather random starting date of 11th Dec 2009. (The application had actually been sent off around the 27th Dec 2009.) As it turned out, the rash had disappeared before we got home so the creams remain unused.
It was lunch time by the time we had finished and I suggested having something to eat at the hospital cafeteria but was not allowed to. My driver (a friend who had worked in laboratories dealing with bacteria) said it was too high a risk. It is definitely difficult to be so mindful of restrictions like this when I feel perfectly well.
The weekend passed very pleasantly with number 1 son and daughter-in-law coming to visit. On the Sunday we went out for a walk and I felt absolutely fine. I am itching to get out on my bike which will be a better test of stamina.
Jan 18th
Apart from the long drive, a much more efficient turnaround at the hospital – in and out in 45 mins meant that we were back home at the start of the afternoon. Everything was very satisfactory (slight improvement in bowel function) though the blood results had not come back before we left. Any changes which needed to be made to the cyclosporin dose would be phoned home if necessary.
An appointment for a nebuliser was made for 21st Jan after my check-up. Somewhere along the way I had missed out on the session I should have had before discharge. As far as I can make out it involves sitting in a cupboard breathing in antibiotics which will protect my lungs. Should be a novel experience!
Jan 19th DAY47 – Jan26th DAY54
I had a bit of a shock this week when I heard from my AAT (Aplastic Anaemia Trust) friend.
The AAT prints a contact list where people who are happy to be contacted by other AA sufferers write a paragraph about themselves giving details of age and severity of their condition. It is very useful because AA is such a rare condition (3 in a million of the population) that it is unlikely that you will by chance meet a fellow sufferer. When I wrote my paragraph I was contacted by J because she had, 2 years in advance of me, had the same treatments ie ATG (animal serum) which had been unsuccessful and subsequently a BMT. We are also around the same age. We have been e-mailing each other with advice and queries for some months now.
There are a couple of booklets available from the AAT on the treatments for AA outlining procedures and likely side effects but they give little idea of how it FEELS to be going through the process.
I had asked J how well she had been at the time of her discharge and how well she felt in the weeks afterwards. At this point I had nothing to compare my experience with and assumed that I was reasonably typical though I was aware that all the health professionals I came in contact with kept telling me how well I was doing.
J’s e-mail really took me aback. Her blood levels at time of discharge were very low with platelets at 15 and neutrophils at 0.2 I was amazed she was allowed home! She felt very weak and needed a handrail fitted to help her climb the stairs. She also had constant sickness and diarrhoea. Over the next 4 months she suffered viruses and infections with unpleasant and painful treatments which left her weaker than before. During this period she also had to be readmitted to hospital. It took 6 months for her platelets to reach 50 and now – 2 years on - her platelet count is still only 120. (My platelet count is over 200)
It just shows how different each person’s experience of the disease can be and how reactions vary. Having read J’s account I now feel extremely lucky that I have got off so lightly and I have a greater understanding of why the consultants think long and hard about subjecting patients to a BMT. I had a bit of a shock this week when I heard from my AAT (Aplastic Anaemia Trust) friend.
The AAT prints a contact list where people who are happy to be contacted by other AA sufferers write a paragraph about themselves giving details of age and severity of their condition. It is very useful because AA is such a rare condition (3 in a million of the population) that it is unlikely that you will by chance meet a fellow sufferer. When I wrote my paragraph I was contacted by J because she had, 2 years in advance of me, had the same treatments ie ATG (animal serum) which had been unsuccessful and subsequently a BMT.We are also around the same age. We have been e-mailing each other with advice and queries for some months now.
There are a couple of booklets available from the AAT on the treatments for AA outlining procedures and likely side effects but they give little idea of how it FEELS to be going through the process.
I had asked J how well she had been at the time of her discharge and how well she felt in the weeks afterwards. At this point I had nothing to compare my experience with and assumed that I was reasonably typical though I was aware that all the health professionals I came in contact with kept telling me how well I was doing.
J’s e-mail really took me aback. Her blood levels at time of discharge were very low with platelets at 15 and neutrophils at 0.2 I was amazed she was allowed home! She felt very weak and needed a handrail fitted to help her climb the stairs. She also had constant sickness and diarrheoa. Over the next 4 months she suffered viruses and infections with unpleasant and painful treatments which left her weaker than before. During this period she also had to be readmitted to hospital. It took 6 months for her platelets to reach 50 and now – 2 years on - her platelet count is still only 120. (My platelet count has been over 200 and is now around 180).
It just shows how different each person’s experience of the disease can be and how reactions vary. Having read J’s account I now feel extremely lucky that I have got off so lightly and I have a greater understanding of why the consultants think long and hard about subjecting patients to a BMT.
Jan 21 Hospital visit went well in that the examination showed no problems and the blood results were good with haemoglobin 10.6 and platelets 190. We arrived in good time but somehow my notes drifted to the bottom of the pile so that I was last to be seen, finishing around 12.20pm. This meant there wasn’t a huge amount of time to jump in the car and nip across to the hospital where I was to have my session with the nebulizer in the cupboard, scheduled for 1pm. But all was fine as that department had the same relaxed approach to appointment times. Only one person can use the nebulizer, morning or afternoon so there was no hurry. I assume this restricted use is because otherwisethere would be a build-up of the antibiotic (pentamidine) in the small space. It is given prophylactically to prevent pneumocystis pneumonia. It must be strong magic because once the nebulizer is going the nurses are not allowed to come in.
The “cupboard” turned out to be a sizeable room probably about 2 ½ m x 1 ½m with a window in the door so not at all scary. An arrangement of tubing, mouthpiece etc was fitted together and the medication introduced into it. You know that it is working by checking whether vapour issues from the mouthpiece, which is a rigid rectangular piece of plastic about 3cm x 2cm, not particularly suited to the average mouth shape or not mine anyway! Next time I shall use a paper towel as a bib as I seemed to dribble all the time. It took about twenty minutes, more awkward than unpleasant – it is quite difficult to read while using it because part of the book is always obscured by the tubing.
Later on that evening I got a phone call to let me know to alter my cyclosporine dose. (The cyclosporine levels take longer to come back from the lab so are not available before leaving the hospital.) Cyclosporin works to prevent graft versus host disease but at the same time is an immunosuppressant which means that the body is more vulnerable to infection.
The next day saw me back at hospital D having the third dose of retuximab to counter the Epstein-Barr virus which had been reactivated three weeks previously. Although it was now showing as negative the course had to be completed – no problem really as it involves having the antibody through my line while reading and relaxing on the reclining chair, perhaps dozing a little with the effects of the pre-med (piriton) while the staff bring me hot drinks and sandwiches. There are worse ways of spending a Friday morning!
I spent Saturday (Jan23rd) wandering around an antiques market with a friend – (avoiding very dusty places and people with colds obviously) and bought all manner of unmissable bargains from a couple of easels to a large copper container which I will use for plants in the garden.
The next day was sunny with a cold breeze but sufficiently enticing to make me want to get out on the bike. So, after a few chores Nick and I set out on a level bike ride, down to the sea, along the esplanade and round the harbour and bird reserve. We worked out it was probably about 6 miles in total. I didn’t have any problem on the flat and managed the gentle rises fairly easily. I will have to make the next trip out a little more challenging so that I can find my level. Apart from when I was on the exercise cycle in the hospital it is a long time since I was on a bike and fully expected to feel stiff next day. However I felt absolutely fine.
Jan 25th Birthday of Robert Burns. Usually we host a Burns Night on the Saturday nearest Burns’ birthday with up to 22 people feasting on cock-a-leekie soup, haggis etc and reciting verse in Scots dialect or singing Burns’ songs. I do think we could have done it this year too but the invitations go out around the 5th of January and I wasn’t sure at that time how I would be feeling now so Burns may have to have his birthday shifted to a little later in the year.
Jan 26th
Went to hospital S for the usual check up. Everything was fine though my neutrophil count had dropped a little to 1.2. I had a bit of a chat with the doc with reference to holidays. Nick and I were hoping to go to the Scilly Isles in May or June. The doc asked if it would be just a cottage holiday but I said we intended to take the kayaks and do a fair bit of paddling. He said that he didn’t think I’d be up to kayaking by then. (I didn’t tell him that I feel up to kayaking now if the weather - and the sea – were a bit warmer.) I also asked whether, for reasons of insurance, I still had aplastic anaemia and he said that he didn’t think I would get an insurance to cover me as it would be only 6 mths down the line from a bone marrow transplant. He suggested a holiday on the British mainland for this year. I thought it wise not to ask him just yet about trying a spot of rock climbing once the weather heated up a bit.
All this was a little disappointing but the doc did put it into perspective when he explained that there was still significant risk from infections particularly virus infections and that graft versus host disease was still very much a threat – that these were still early days – the stem cells were transfused in the hospital but the really tricky stuff was happening now under an outward appearance of wellbeing. The donor’s immune system merging with mine could still throw up some problems. He said that being able to say I was cured was a long way off yet and that it was possible for the graft to fail up to a year post transplant even though there had been initial success
Already knowing the answer, I asked if there was any let up in the restrictions but no – I still need to keep to a neutropenic diet i.e. no shellfish, pate, soft cheeses, unpeeled fruit etc and still no cinema, supermarket, dusting, vacuuming etc – well I suppose it’s not all bad!
January 27th DAY 55 – January 31st DAY 59
The weather was too poor to be outside much and I was not allowed to mingle at close quarters with the general public but my energy levels were fine so I set about doing a few of those outstanding chores around the house. Unfortunately most of those involved stirring up a bit of dust. However I began to sort out the numerous boxes and tea chests stored in our loft room. This was probably not on the hospital’s list of suitable tasks but I did wear a mask when it became too dusty. My thinking was that if I tidied up the loft then I would have earned myself the right to indulge in some watercolour painting. There was quite a bit of heavy lifting – moving boxes of books etc but I managed fairly well with only an hour or so of being sidetracked by old photographs – lucky we didn’t run into the fashion police back in the eighties!
I had my last dose of retuximab (for the Epstein – Barr virus problem) at my local hospital and also had a blood test at the same time just to keep an eye on the drop in neutrophils. Everything was fine and the good news was that i only had to attend Hospital S once a week.
I spent the weekend without Nick as it was his brother’s 60th birthday and he flew off to Ireland for the party. I of course could neither go in an aeroplane with the proximity to other people and the risks from recycled air nor attend a social gathering where other guests might have colds.
Instead I went out with a friend on the Saturday to Dartmoor – a journey of around 2 hours. I did the driving so that I could gauge how I would cope with a similar length of journey to Hospital S in the future. There was no problem and we had a good day out with a walk on the moor – there was even a fine covering of snow – a visit to a specialist yarn shop and a visit to an Art Gallery.The reason for the yarn shop visit was to choose wool and a pattern for a knitting project. I think the last time I knitted something significant was when the boys were very small. Usually of course in my other life I was busy most nights of the week with schoolwork, the gym, climbing etc and didn’t have time for knitting. I eventually got home about 8 o’clock in the evening and was glad to relax but certainly wasn’t exhausted.
The Sunday was a continuation of the loft work – still hadn’t got round to painting – I went out in the afternoon to the tip with all the rubbish I had collected and as the weather was bright, set out on a level bike ride of about 6 miles. Next time I’m going to try some small hills even if it does mean I have to get off and push.
