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 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 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.