Wednesday, 17 October 2012

A tough week or so

Hi everybody.

I know it's been some time since I last posted, which has been frankly because I haven't felt up to it or had the inclination to do so for quite some time. There is no doubt that this second course of treatment has hit me much harder than the first course did and I have certainly not been as well as I was during the first course.

In my last post I reported that despite my reservations about going back into the hospital, I took the decision myself to be admitted as I couldn't stand the agony of the journeys back and forth with a pounding headache that lasted some days afterwards.

I last posted the day after my re-admission and since then I've had a roller coaster of ups and downs, with some comparatively good days and some which have been downright bloody awful.

The early part of last week saw me recover slowly from the after effects of the chemotherapy treatment I had on the Friday before. This drug (Cyclophosphamide) is apparently renowned for making people sick. Thankfully I have to endure it only once more this Friday and the consultant has promised to review the anti-sickness regime that will be given in conjunction with the treatment. I don't think I could stand another weekend like the one a couple of weeks ago.

Fortunately by Wednesday, which was my birthday, I was feeling better, though still very rough. Andrea took the boys out of school early so that they could come and see me and I could open my birthday cards before their evening activities of football training and scouts started. It wasn't the way I'd have liked to have spent my birthday and hope we can celebrate properly as a family when I get out of hospital next.

I had another lumbar puncture on Thursday and was feeling very weak before the procedure and didn't feel up to sitting upright. The consultant said he could try with me laid on my side and had two attempts to insert the needle into my spine to get a sample of the spinal fluid. Unfortunately neither resulted in a sample being able to be drawn off and as he poked a little further on the second attempt the needle must have touched a nerve in my back and my legs shot out in agony. Fortunately I didn't kick anybody!

I elected to try sitting up and the benefit of the additional gravity resulted in the requisite sample being obtained and after the chemotherapy drug had been injected and a dressing applied, I was returned to my bed in the ward to lay stationary for the required two hours.

Apart from that the other drugs have been having an effect on my blood production which has resulted in me needing two further transfusions of two units of blood each time. The first unit was given to me on Friday 12th and went OK, though because the cannula wasn't working properly I didn't get the full unit. The second unit on the Saturday is what I believe made me violently ill that afternoon. It was the only thing that had been different to the other treatments I'd been receiving and is the only thing that I think could have brought on the sickness I had for the remainder of the day and left me feeling distinctly unwell.

I recovered slowly on the Sunday and by evening time though I'd only had a bit of weetabix for breakfast I was feeling quite a bit better. I was given some intravenous fluids overnight. By Monday my appetite had been restored and I was eating almost normally though struggling to finish meals completely.

Monday and Tuesday this week saw the last of the weekly cycle of chemotherapy drugs so I have a day off today before my next lumbar puncture tomorrow. Yesterday also saw the second transfusion of two units of blood which thankfully passed this time without incident. I took the precaution of making sure I sat up for a couple of hours after each unit had finished being transfused as I'm sure last time the blood went to my head and made me sick.

I also had another chest x-ray yesterday to check that my lungs are clear as they can often suffer from infection during the chemotherapy treatment. I haven't heard the outcome of the x-ray yet but am assuming as nobody seems to be panicking that there are no problems.

Hair loss is taking hold and since the end of my first cycle of treatment I have noticed an increasing number of hairs on the pillow when I wake each morning. When I go for a shower each day the shampoo lather is full of hair and the towel is covered when I dry my hair. It's reaching a stage where my scalp can be clearly seen through my hair and it is thinning considerably, but hasn't yet reached a stage where I'm considering shaving my head.

So there you have it. My body is now getting the battering I always anticipated but to date have not experienced. This phase of treatment is considerably more onerous than the first and is probably more akin to the way I expected to feel at the beginning of treatment. Whilst I was anxious to avoid having to return to hospital, I'm now resigned to the fact that I'm unlikely to be home until this cycle of treatment is over which is another two weeks.

However, I persevere with it in the knowledge that strictly speaking my Leukaemia is in remission and the work that is now being done is to keep it from coming back. At some point in the future the medical team will make a risk assessment as to the method to achieve the best outcome from my treatment and will decide whether to put me on maintenance therapy or go for transplant. Sadly the test results from my sister showed that she wasn't a match, though hopefully should transplant be the preferred option, one can still be found from the bone marrow donor register.

As a subtle reminder, the fundraising continues through my JustGiving page and thanks to the generous donations so far I've jumped to 3% of my target already.

The list of people wanting to join the trip to Snowdon grows and I'm looking at creating a JustGiving team so that our combined fundraising efforts can achieve the £10,000 goal and help the scientists continue their valuable research into curing this type of disease for more people.

Thanks for reading and hopefully I'll update sooner next time.

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