February 2010

February 2010

February 1st DAY60 – February 8th DAY67

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