October 2009

Things are happening at last!

Went to see the consultant at Hospital S. We had a 2 hour consultation with him with a specialist nurse present. After establishing that there was a history of Aplastic Anaemia transplants at this hospital I was more than happy to go ahead.

The whole procedure was gone over in detail with risks and side effect possibilities clearly detailed. The possibility of 3 - 5 litre of diarrhoea per day sounds like fun!

I'm pretty good at not dwelling on the negative especially where effects are possibilities rather than inevitable. I much prefer to know the worst case scenario, which I then let slip to the back of my mind. I remember reading somewhere that whether you are a pessimist or an optimist the result is the same but that the optimist has a much pleasanter journey there. If outlook does have a bearing on the outcome though I'm sure that an optimistic one will produce better results. I'm also sure that the reaction to drugs and procedures is very individual so that you cannot know how it will be for you until you actually experience it. So with that in mind, Bring it on!

After having been in limbo for so long we now have a date! The 9th of November for the conditioning treatment (chemo) and the 19th November for the actual transplant. That's handy I get to fit in my birthday first on the 8th November.

On the way home from the hospital I went through my mobile phone address book letting friends know what is happening. I feel a mild sense of elation now that a date ia fixed and we know where it is going to happen. It is also reassuring to hear from a friend of mine, whose friend is a consultant haemotologist in a different part of the country, that he rates both our hospital and our consultant.

The main area of concern that I have had to come to terms with is losing my hair. At present my hair is very thick and curly, coming someway down past my shoulders. Nick, my husband, doesn't see what the fuss is about but since he is almost bald I suppose that is understandable. My consultant tells me that it is a virtual certainty that I shall lose my hair - given the strength and type of chemo used. With this in mind, I have made an appointment to have it cut short on the 6th Nov when my hairdresser comes back from holiday. I decided not to have it cut too early in case for whatever reason the admission date gets pushed back.

Now the question is what to do with the hair which is cut off? It can be donated to a Cancer charity to use in real hair wigs. Also I did partially investigate having a wig made of my own hair but it is hugely expensive and would also take a long time. Other possibilities include having it made into extensions - I have a friend who could do this. However my hairdresser tells me that it would be some time before my hair would grow back strong enough to take extensions. I also expect my new hair to come in grey as at present I colour my roots. Colouring hair after chemo is also a bit risky and it is better to let the chemicals fade from the system before this is attempted. Green hair is not a good look! I have been toying with trying to stitch the cut hair on to a headband that could be worn under a hat. This might be disastrous but still worth the effort. I'm sure it will provide us with a few laughs anyway!

I'm beginning to be aware of the time disappearing fast and have made October my official month of indulgence. I'm using it as an excuse to sort out my social life with lots of coffees and lunches.I am trying to fit in lots of things before I go into hospital - not least a bit of exercise.

I thought I might take out a month's subscription at the gym (for gentle exercise) but when handed the new medical details form, I muttered that I might not pass muster. On further disclosure it became clear that I would not be allowed access without a letter from my GP. On enquiring about this at my surgery I was told that there would be a cost of £20 (just less than the month's subscription) so I decided to go out for a 6 mile cycle instead - on the flat of course. I have also gone back to yoga.

I have made time for myself to do some watercolour painting and would like to take some to an Art Fair at the end of the month though that might be pushing things a bit.

I persuaded Nick to spend a weekend in Cornwall and we managed to book into an excellent hotel on a beach recommended to us by our surfing son and daughter-in-law. The weather on the Saturday was absolutely beautiful and we lay in bed in the morning watching the surfers on the beach. The Sunday started foggy and rainy but we managed a bracing coastal walk without the need for waterproofs.

I've embarked upon the raft of tests required as baseline assessment before the BMT. These will also throw up any current problems which can then be dealt with. So far I've had a kidney scan, echocardiogram and lung function test. All have been clear and I find that I have 8% higher than expected lung capacity - all those outdoor pursuits I suppose. I still have to have a bone marrow biopsy (my 4th) and a GFR test - a kidney function test where radioactive dye is injected into my vein. Apparently if you work with photographic paper you cannot return to work immediately afterwards as the dye will give off gamma rays which work like high energy light rays and will develop the film You also need a covering letter if you are going to go through airport security checks in the couple of days following. I can just imagine the mayhem you could cause!

16th Oct: Today I'm having my last blood transfusion (3 units) before I'm admitted. I'm usually here every 3 or 4 weeks - a peaceful interlude sitting quietly for 6 hours or so usually catching up on reading, letters or French homework. It's a pretty good deal with a 3 course meal thrown in !

31st Oct: About 10 days to go before admission and time is disappearing fast. Trying to fit lots in before the great adventure begins - social meetings, finishing off curtains, sorting out tiles which will hopefully be put up in the kitchen in my absence. All this between visits to hospital(s)

Yesterday I had an appointment with the wig fitter - what a laugh! I have so much hair I couldn't get it up under the wig. I was reminded of a line from a comedy show - "looks and feels like a small furry animal on the top of your head." The wig fitter said it is a long time since he has seen someone with as much hair as I have and that it would be a pity to cut it if there was any chance of me keeping it through the chemo. I don't want to go down that road now - decisions have been made. Anyway he has very kindly offered to come to hosp S with some samples once I have less hair. Apparently my colour (ie to match my own hair) is called chocolate copper - sounds tasty.

I am beginning to collect wig stories like the friend who opened the hot oven door and melted her fringe and the orthodox jewesses who shave their hair after marriage so constantly wear wigs, also the dog that ran off with the wig from the wigstand.

My sister has very kindly provided me with a "See- you- Jimmy" wig - a tartan hat with ginger "hair" sticking out all round - all part of my Scottish heritage.It is reassuring how the family members rally round with their support at times like these. Son number 1 on being told that a BMT was on the cards said "Does that mean I'll have two bald parents?" while son number 2 said "You won't be needing your climbing gear for a while Mum. Can I borrow it and take it back with me to Scotland?"


Have been into Matalan and bought up a year's supply of jammies - tops and trousers. not necessarily what I would normally choose but more suitable for lounging around in bed for 6 weeks or so. We have also been looking at laptops with a view to me having one in hospital. Sadly there is no wifi in the bonemarrow area so I will have to get a dongle.

I'm not sure at this point if Nick will take a period of time off work or how often he will visit.When I had the ATG he worked and visited daily. Although that hospital was a little nearer home, he was run ragged by the end of it all. It just shows what a toll these episodes take on the carers and families. He has 2 centres of work one of which is two and a half hours from the hospital so it will be a bit too far to travel. However, there is the chance of staying overnight at a house near the hospital for a nominal fee. Rooms cannot be booked in advance and may have to be shared but at least it offers a solution of sorts.Lots of friends have offered to come and visit but it will take them at least one and a half hours travel each way and my worry is that they will make the journey and then find that I am feeling too poorly for visitors. I suppose we shall just have to see how it works out.

I have managed to get my act together with the paintings and and am now ready to pack up after at the Art Fair - great gallery, good light, great atmosphere with live music but virtually no customers! In the 3 hours I counted about 30 people and some of them were connected to the musicians! One very small sale so not a great success.