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.
