Tuesday, 6 September 2011

First follow-up

Time for my first return to the mothership following discharge last Wednesday. We decided to drive, my wife taking the wheel, as my energy is not yet up to coping with public transport.

It was very blustery around the Euston Road when I got out of the car and my beloved baseball cap flew off my head at one point. At the moment I do not have enough hair on my head to provide the right amount of friction necessary to keep a hat in place. The wind did its best to blow me off course, but I battled through until I reached the Rosenheim Building, where my first task was to deliver some biscuits to the staff in Ambi Care, who had looked after me so well during chemo and after it until I was admitted to the ward for my neutropenic phase. It was strange seeing people go through what I did just a few weeks ago. Although I do not feel entirely well yet, I am glad that treatment is over and that my path is now heading up into the light.

My wife soon enough appeared, having found somewhere to park the car outside the Congestion Charge boundaries and after a little while the consultant called us in. She told me I was looking well, which is a very reassuring thing to hear from a specialist! We reviewed my time in hospital and how I was feeling now, which is in essence normal for this quite early stage in my recovery. Follow-ups will continue on a monthly basis, except if there are complications and after six months a bone marrow biopsy (whoopee!) and a CT scan will be carried out to see if my disease really has been knocked for six. I fully expect that it will have been, but there is no way around the need for proper investigations.

I will ring the hospital tomorrow for my latest blood counts as there was not enough time for today's sample to be analysed.

There had been torrential rain during the afternoon and this caused flooding on the Westway and really terrible traffic jams over much of our route. Along the way a white Lamborghini cut in front of us; its registration was HRO 1N and we could not help wondering whether this was a clue to the occupation of its owner.

We arrived home from Central London in the length of time it normally takes us to reach Birmingham and we were almost beyond food when we got back to Twickenham. My sense of taste is still quite disrupted, with only some of the flavours in any given food item making their way to consciousness, but I wolfed my supper down nonetheless.

I was going to wrap up this blog quite soon, it being a year since my diagnosis. After talking to the specialist today however I am minded to carry on for the next few months so that there is a record of my recovery as well as of my treatment. I continue to hope that this will be helpful and informative. Also, I get my laptop back from repair tomorrow, so you may find more pictures appearing in due course.

One final thing before I sign off today: a wonderful and kind friend called John Penny has taken it upon himself to run the Ipswich half-marathon for the benefit of research into Waldenstrom's. The race is on 25 September and you can find John's justgiving page at justgiving.com/John-Penny

This is a rare disease and therefore attracts relatively little in the way of research funds. It is at the same time related to some other conditions such as chronic lymphocytic leukaemia and multiple myeloma, so that research could throw light on these and other diseases. It is often by concentrating on small areas that a bigger picture can be more effectively formed, as has been shown in stroke research. Whatever support you can give John in his mighty enterprise will be greatly appreciated.

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