September 2010

9 months post transplant

At last – September – I had been looking forward to this month for so long. My next goal was now in sight.

When I was in hospital recovering from the transplant and becoming tired after a few simple stretches and yoga exercises, the thought of climbing on 400ft sea cliffs seemed light years away. The docs had stopped me climbing back in early summer of 2008 so with the loss of fitness combined with the transplant and my advancing years there had been times when I thought that returning to climbing would be out of the question. But never say never. Back in December my climbing partner rang up when I was in hospital to see if I was interested in going climbing on Lundy in September 2010, I said “Yes”.

After my first attempts at climbing back in the summer I thought I’d still be going along but only really as a tourist with perhaps a crack at the odd very easy climb. I had assumed that the timing of our trip was to coincide with the climbing club meet which would provide a pool of climbers with a wide range of ability and that I could join the novice section. However this was not to be as our group’s visit was arranged for two weeks in advance of the club meet (at the request of someone who subsequently dropped out of the trip – but that’s another story...) So in the end there were four of us, two blokes who climb at high grades, the wife of one of them who doesn’t climb at all ...and me. I began to worry that either I would get into situations that were beyond me or that I might not get any climbing done at all. Based on my climbing progress so far I thought that with the best will in the world, even if the weather was favourable, I would probably only be strong enough to climb on alternate days.

As I was supposed to have my first infusion of donor lymphocytes just before the Lundy trip and it was possible that I might have a reaction from it, I was able to negotiate that it be delayed till we got back.

As it turned out, we had excellent weather for six days. I climbed for five and a half of those and really enjoyed it. The best day in achievement terms was the one when I got to the crag only to discover I’d left my climbing shoes back at the accommodation. Paul kindly lent me his extra pair of shoes which were 3 sizes too large. (To get the best out of climbing shoes they should be worn very close fitting so that your feet engage well with the rock). I then led all three pitches of a 400ft route. It was The Devil’s Slide – a Lundy classic which was on my “must do” list. At least it was only a middling grade. However the next climb was the highest grade I’d ever climbed and there was a stream of water running down it! Having abseiled down to the bottom of the cliff and with the tide coming in (very fast as it does in the Bristol Channel!) there was no alternative but to give it a go. I have to say I felt pretty pleased with myself when I completed that in my clown shoes!

There was an extra bit of adventure at the end of the trip when the weather deteriorated and neither the boat nor the helicopter could get out to the island so we had an extra night and were helicoptered off the next day – Great! I’d never been in a helicopter before AND I got to sit up with the pilot! – just as well there wasn’t a medical emergency!

As the date set for the lymphocytes was the same as the extra one we had to spend on the island, it meant that there was a delay with them too. However, the hospitals were very good, adjusted the date and it all went through without a problem. Although they had said it would be fine for me to drive myself there and back, I’d been given piriton in case of any reaction to the lymphocytes. It was only the lesser oral dose but I felt scarily sleepy on the return journey so I think next time I’ll have to either counteract it with caffeine tablets or take someone with me. Other than that there were no negative effects.

On the Sunday following we watched the Great North Run on television and as always with these kind of events I felt inspired by it. Nick and I ran the GNR 25 years ago – could we run it again next year? I discovered that the Aplastic Anaemia Trust has a few places in the event and so another goal began to form in my head – Team Lyness could take part next year! This is still just an idea though and since I haven’t run for something like twenty years I’m not really an obvious candidate – never mind the transplant! Nick has run the London Marathon 4 times (though not in the last few years) and number 2 son has just completed his first triathlon so I think the onus will be more on them.

Something I have decided to run for the Aplastic Anaemia Trust is their quiz which takes place in November. It is a national quiz with the same questions being asked in different venues around the country at the same time. So if you are reading this and live in Dorset get in touch and make up a team!

On the activity front, I have now signed up for a block of yoga sessions rather than just the odd one and have managed a couple of sea swims this month as well as a twenty three mile bike ride and a few shorter ones. I went to the climbing wall for the first time in months. It is quite different to outdoor climbing, more athletic and requiring more stamina as the pace is faster. I think it will take a few visits before I can claim “wall” fitness.

A bit of a breakthrough at my monthly hospital appointment – I was at last given permission to dye my hair! Woop! Woop! Actually my hair is not too bad . It’s short and very curly but it is also very grey. ... And I can also at last have the massage I was given as a present a year ago! So it’s all booked for the beginning of October. Whereas I had expected to be told I could return to work after a year (i.e. after Christmas) the consultant told me that my immune system is still low and that it will be at least April before I can return to work. This puts a new slant on things so I will have to begin to consider my options - work, retirement, different kind of work/ business.

August 2010

8 months post transplant

My climbing continued to progress with some multi pitch routes at the beginning of the month where I took my turn to lead. This boded well for September when I would be going off with friends from my climbing club for a week’s climbing on Lundy. This was a trip which had been booked back in December when I was in hospital having my bone marrow transplant. At the time it had seemed difficult to imagine being back rock climbing again but it had become a goal and now looked as if it might just happen. The only problem was that the other climbers who were going like to climb the harder grades and I wasn’t near that level yet.

Another goal, first visualised in the hospital back in December was to climb Suilven – a mountain in Scotland which had been on my wish list for many years. Not the highest of the Scottish peaks at 2,400ft it nonetheless is an iconic mountain, rising as it does straight out of the glacial, lochan strewn wilderness of Sutherland, a striking landmark for miles. Nick had brought a postcard of it into hospital, one that had been sent to me by my sister some time previously and from that time it had become fixed in my mind. It had become the focus for our main holiday and so it was that we set off once again up to Scotland in mid August.

We took our bikes with us and following a suggestion from number 2 son (a keen mountain biker) we set off on a bright day (but with a poor forecast) to cycle to a loch up behind Kinlochleven. He had mentioned that there was a bit of uphill to start with but after 2 miles of pushing the bikes up the very steep track the novelty was beginning to wear off. And then it started to rain..... ...I found a discarded rain jacket several sizes too big for me which I put over my shower proof jacket and that kept the worst of the rain off for a while until it set in to a steady downpour. We were sure the loch couldn’t be too far away and pressed on determined to have some reward for our efforts. We were now up high enough to see what weather was coming our way from the west – more rain and plenty of it in sagging black clouds. By this time we were drenched to the skin despite the extra jacket, the light had faded to a gloom and the temperature had dropped considerably. Up ahead we saw a building which we took to be linked to the dam which we expected at the end of the loch and so we continued on. However, on reaching the building we only discovered a level, concrete covered conduit running beside the track which was still climbing upwards. (We discovered later that had we cycled along the conduit at this point, we would have had a level ride right to the dam at the end of the loch).We set ourselves a turning point, a tree on the skyline and headed for it. Still no sight of the loch but a distant view down into a very deep valley – had we really come up that far from sea level? We decided we really needed to have a map next time and with our minds full of what we might say to our son, along with the frustration of not reaching our goal; we turned around and headed downhill. It was so steep and twisting that at times it was too dangerous to cycle – even more frustrating having to push the bikes downhill as well! However on the straighter parts we managed to reach quite a speed, hurtling over bumps, the bikes rattling, literally a bone shaking ride without the benefit of suspension. It was with great pleasure, that we eventually reached the car, dry clothes and warmth.

We had intended to take the kayaks with us but when we were offered the chance to borrow a friend’s campervan (which had a domed roof and so could not transport them), we decided instead to make use of that and leave the kayaking to another time. Our arrangements involved meeting up in Fort William and swapping our car for their VW camper. I’m not sure that Morrisons completely approved of our transferring mountains of clothes and dirty washing between the two vehicles in their car park but I think we balanced it out with stocking up on supplies in their shop. Our friend and her sons had just completed a Highland tour and were now going to take our car back to where they lived in Northumberland. We would swap back after around 10 days.

We had quite an adventure touring round the remote but beautiful north west of Scotland in the campervan, choosing lay-bys to park up in at night with beautiful views to wake up to in the morning. The weather was variable and as we drew closer to Suilven we carefully chose our day for the ascent. Reading up on the route we discovered that although the mountain itself was not terribly high in terms of Scottish peaks, there was a very long walk-in. We had parked the night before as close as we could to it and had chatted to a couple who had just returned from it. I asked how far they had walked and they produced their pedometer. It showed an eleven and a half mile round trip – and that was only to the bottom of the mountain! We had decided we would cycle as far as we could before having to walk and hoped to save ourselves a few miles walking. The day dawned - superb weather with a gin clear sky. We set off around 9.15am past a loch with Suilven perfectly reflected in the still water. After about a mile and a half it was clear that Nick’s bike was not going to make it. Steep uphill pulls on the rough track caused the chain to come off and so we had to abandon the bikes and strike out on foot. About half of the walk-in was on a this track, the other half was across rising tiers of very boggy ground where it was possible to sink down a foot or so in to sucking black peat.

Suilven has three summits and the tops are reached by first climbing to the saddle between two of the them.This climb is relatively steep but does not take very long. It was some time since I had climbed anything so steep and I did have to pause from time to time to “look at the view”. When the saddle is reached, the summit rises almost a mile to the right. The views from here are amazing, miles and miles of moorland scattered with hundreds of lochs and further views out to the west to the Outer Hebrides. We decided that since we had made it this far we should do all three summits. This was not as easy as it seemed as Suilven is around 3 miles in length and there is a considerable dip between the summits. The final summit also demands rock climbing skills and care is needed if you do not have a rope.(We did not have a rope!) Having completed all three tops we returned to the saddle and began the descent. Another half dozen people were also on the mountain that day but we were the only ones to attempt the three summits so were last to descend. It was a long trek back but eventually we reached the bikes and cycled back to the van. It was a great day out and had taken us nine hours of pretty much continuous walking – a memorable day and well worth the effort. It felt really good to have achieved a goal set back in the hospital in December at a time when it was an effort to get out of bed to go to the toilet. Those daily spells pedalling the exercise bike were the start of the long road to this moment. We were a bit creaky for the next couple of days but gradually recovered and continued on our tour but kept to short cycles and fairly gentle walks from then on. We were tempted to climb another mountain – Ben Hope. It is attractively situated, right by a road but when we passed it, it was already mid afternoon and too late to start out. – Perhaps another time.

On return from the holiday I had my usual hospital check-up. Because of the way the system works, the blood results are often not back from the lab before I see the doctor and so some months I don’t know my blood results until four weeks later .However, in August the Haemoglobin was 131!, the White blood cell count was 4.8, the Neutrophils 3.8 and the Platelets 200 . Apart from the platelets which were down slightly, all the others had improved significantly! The following day I went to my local hospital for my usual monthly dose of pentamadine which is given by nebuliser (not very pleasant- mildly caustic and makes you dribble). Although the nurses said that it is often only given for 6 months, the docs apparently want me to keep having it.

July 2010

7 months post transplant

After my college friends left my sister and I had planned to have a few days camping. We set up the tent and went to see my brother who has a caravan nearby. We had a very sociable evening with him and his wife and their neighbours. My brother’s neighbour mentioned that hurricane winds were expected but we didn’t take much notice as the evening was so calm. When we returned to the tent around midnight we tightened guy lines just in case then went off to bed. However, sometime in the small hours the hurricane did arrive, complete with horizontal rain. Now there is something cosy about rain when you are wrapped up nice and warm in a tent but this was a bit different with the tent fabric blowing right on top of me. This was not a good sign. By 7 am I couldn’t bear it anymore and got up to discover that two, if not more, poles were broken. After vainly trying to rectify the situation we packed all our kit into the car and gathered up the tent as best we could in the howling wind. By this time we were soaked through so carried on to help some other people struggling with their tents. One couple in particular attracted our sympathy as they had two toddlers and a massive tent. We managed a cup of tea in the cooking shed which also contained another twenty people all in dripping waterproofs. That phase of weather passed through quite quickly but July continued to be unsettled.

Life continued with a lot of work put into the garden and leisure time spent on short (4miles) cycle trips. I also ventured into the sea accompanied by son number 2 who was back home to finish writing up his PhD. He was training for his first triathlon so we were hardly a matched pair – me swimming breaststroke sedately and slowly and him zooming up and down doing front crawl. I expected to be tired very quickly but found that I could swim continually for some time without a problem. We also went out climbing and although I was mainly top roping i.e. following my son, I was beginning to feel a bit more confident and thinking it would not be too long before I would attempt some more leading.

By mid month my cyclosporin was stopped completely with a view to having my first lymphocyte infusion in mid September.

I had another trip up to Scotland with a friend, staying in my brother’s caravan. We did a bit of cycling and walking and even managed a little bit of hill climbing though only to around 1000ft. but an achievement nonetheless . The going was very rough with no path and tussocky heather underfoot but the wonderful views made it worthwhile. We also managed a bit of running and speedy dry- stone- dyke- climbing when chased by a herd of bullocks! That wasn’t on the agenda but did keep us on our toes!

Towards the end of the month I went out with a friend to do some trad climbing at Swanage. This was a little more cerebral than the climbing I’d done since the transplant in that it involved choosing where to place gear and which gear to use rather than clipping into the insitu bolts. I started off top roping middling grade routes but by the end of the day we had upped the grades and I managed to lead a fairly respectable route so was very pleased with myself.

June 2010

June 1st Day179 - June 30th Day 209

We went off to Scotland for a week to stay in the beach hut we go to every year. It is an old fisherman’s hut but has been extended to have three bedrooms. It is still very rustic though and only 10 metres from the sea so ideal for kayaking. We had quite a few outings getting to know our new boats and going further than we had done on previous trips.

I found that my arms were a little tired after the first paddle but I quickly settled into a steady pace and by the third trip had no problem at all. We also did some cycling, a real pleasure on the empty back roads of the south of Scotland. I even took in some off road cycling though some would say it was cheating a bit as I was taken to the top of a hill by car then cycled 12 miles back, pretty much downhill all the way, to the shore. Although the weather was kind the sea was still rather cold so I didn’t get round to swimming.

On our return from Scotland I spent a lot of time in the garden, digging a new flowerbed in the lawn in the back garden, preparing it and planting it. I must admit to Nick doing most of the heavy digging but I did do my fair share of moving tubs of flowers around, all the time being careful to wear gloves to avoid the possibility of picking up bacterial infection.

Around this time I had my first attempt at cycling “the loop”. This is an eleven mile route which, over the years, we have cycled regularly and it takes in three significant hills. It was whilst attempting this route in the spring of 2008 that it became clear to me that I was not well because I could not manage to pedal up the least of the three hills. It was therefore a bit of a benchmark. I did manage the first hill but had to dismount about three quarters of the way up the second hill and struggled on the third hill, gasping for air at the top. However I had acquitted myself better than expected and felt pleased with the result.

Another short trip to Scotland towards the end of the month was to meet up with two friends from college and my sister. We hadn’t really spent time with each other for probably thirty odd years. However, we walked and talked and laughed and cycled and the high point of the break was when two of us had a go at zorbing.A local farm had diversified into adventure activities including grass ski-ing, archery and zorbing. Before being allowed to take part in the activity we had to fill in disclaimer form, detailing our state of health and listing any medication. My form required extension paragraphs and I was rather concerned that I would not be allowed to go. However, they read it over and waved us on – we had after all absolved them of all responsibility.

“Zorbing” involved the two of us appropriately dressed in swimming costumes, climbing into a huge transparent plastic ball about 15ft in diameter which already had a pool of water sitting in it. Once in, with cameras strapped to our wrists, we were pushed downhill while the water sloshed around and we sloshed and tumbled around in it. My sister took a video of the ball rolling downhill and the screams and laughter emanating from it could be heard loud and clear. There is something faintly surreal about two women in their fifties being pushed downhill by three young lads. The ball came to rest at a grassy bank and we were helped out by these same three lads. I don’t know what it looked like but the emergence, plopping through the plastic tunnel into the outside world felt like being birthed.

Blood levels at the end of the month were more or less the same as they have been for some months with minor fluctuations. Haemoglobin was 108, White blood count was 3.0, Neutrophils 2.1 and platelets 214. As a reminder the normal levels are Haemoglobin 110 - 140 , White blood count 4.5 - 11.0, Neutrophils 1.8 - 7.7, Platelets 150 - 450.

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 27^th 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 22^nd Day 170 – May 30^th Day 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 for the 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!

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 14^th DAY 132 – Apri 30^th 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 17^th 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 heading up 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 20^th

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.

March 2010

March 1^st DAY 88 – March 10^th 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.