Simon Thorp
Simon Thorp - Leukaemia funds
Fundraising for Blood Cancer UK
Story
Latest Update: 30 December 2011
A year has passed since my last update, and there has been a tendency to drop back into life and forget what went on during my 'medical wobble'.
For the moment at least, I delighted to be able to report that the patient has returned to the 'rudest of rude' and is firing on all cylinders. I was running a bit rough last winter, but got back into my full rythym in May and have stayed there ever since. My visits to hospital for prodding & poking are becoming more infrequent and I am being left to get on with life. I am aiming to keep it that way.
If anyone who is at the other end of the tunnel stumbles across these words, I hope that my story will give them strength and a conviction that there is life at the other end.
I cannot stress enough how much I appreciated the support I received. It was not the most enjoyable period, but I do not now want to take the support I received and the money we raised for granted.
In case anyone is looking for a home for another donation to a very good cause, this website is still open to receive donations.
Best wishes
Simon
£10,000 barrier was broken on 10 March 2010 (incl Gift Aid and offline collections).
My views at 4 December 2010
I have not added any more photos you will be relieved to know. Suffice to say, I am doing well. I do get the occasional reminders of where I have been, but I have no complaints, just gratitude and admiration for what has been achieved by the medical world.
The Home Run?
This medical caper has not been a bundle of laughs but it has got me back together. The medical world is fond of saying 'it is early days yet', just when you start to feel a bit gung ho!
My release from regular trips to Glasgow is continuing but and I am being under medical supervision in Dumfries.
There is no room for complacency, and I suspect that I will never be completely out of the woods but at least I am into a well thinned edge of the wood and can start to look around once more.
My earlier thank yous remain very relevant, including the biggest and most important one to he who has to remain anonymous. All I know about him is that last year he was a 31 year old, white male living on the west coast of the USA, but he is the guy who made my stem cell transplant possible. His selfless generosity has given me another stab at running a long race and who knows some benefit from having stem cells that are 23 years younger than my old, knackered ones. I will never know who he is, but thank you anyway.
My earlier thank yous remain very relevant, including the biggest and most important one to he who has to remain anonymous. All I know about him is that last year he was a 31 year old, white male living on the west coast of the USA, but he is the guy who made my stem cell transplant possible. His selfless generosity has given me another stab at running a long race and who knows some benefit from having stem cells that are 23 years younger than my old, knackered ones. I will never know who he is, but thank you anyway.
The other thank yous:
* the Consultants and specialist nursing staff at D&G Royal Infirmary who spotted my ailment so early (and got me into this mess!) and who have provided continuing support and understanding ever since;
* the nursing staff in Ward 10 of D&G Royal Infirmary who had to put up with me for rather longer than any of us would have liked;
* the Consultants and nursing staff at the Beatson West of Scotland Cancer Centre who gave me the Bone Marrow Transplant and who have kept me on the straight and narrow since;
* to all those who have offered me their support - it really has made what might have been impossible possible;
* my special thanks must go to my wife, Barbara, to Oliver and James who have been through the mill with me and given me the incentive and the reason to fight through.
Medical Developments - for the recordI completed 2 rounds of chemotherapy at the end of December 2008. I should have moved into round 3 of chemotherapy in early February 2009, but I developed a fungal infection on a lung that proved difficult to identify and treat. I could not go back into chemotherapy treatment until fungus free, and I had surgery to cut out the infected area, on 24 February 2009. After recovering from the surgery, it was back on the chemotherapy trail and I completed round 3, on 20 March 2009.
I was allowed out of hospital on 10 April and operated as an outpatient from home until being admitted to the Beatson Clinic for the stem cell transplant on 20 May. The transplant took place on 29 May and I was fortunate to be discharged from the Beatson Clinic nice & early, on Monday 15 Jun 09.
I developed an infection on the way back from my Glasgow hospital appointment on 13 July 2009 and was admitted straight into D&G Royal Infirmary with a high temperature. I was released from DGRI on Thursday 16 July 2009, but in poor shape and the weekend passed in a bit of blur - I was good for nothing apart from falling asleep in front of the Open Golf!
I managed to stay infection free thereafter and made slow progress while my system adapted to the new stem cells.
I went through a period with an uncomfortable skin rash which was put down to a Graft vs Host disease reaction between my blood that contains new cells and the rest of me that is still working off the old me. This settled down slowly, but I still get the odd reminders that there is a bit of conflict taking place.
Progress has not been as fast as I would have liked but it is still progress and I have nothing to complain about. I keep remembering the adage that "Life is good, when you consider the alternative!" (with thanks to Julian Baker).
How can you help?
Being on the receiving end of all the attention and expert care associated with treatment for my Acute Myeloid Leukaemia, and other afflictions, is a humbling experience. It is all take, in terms of resources and medical care, and very little give.
No-one could help me directly with donations of blood or bone marrow, but to support the efforts of Barbara, Oliver & James to give blood and platelets, I hope that I might inspire some other family members and friends to increase their efforts to donate blood and platelets and perhaps to go onto one of the bone marrow registers (for more information see: The British Bone Marrow Registry or the Antony Nolan Trust websites). In this way their generosity will help to provide support for the next person.
Some may not have the opportunity, or may even be too old(!), to provide this support. As an alternative, this website provides a quick and efficient way of making donations to Leukaemia & Lymphoma Research that helps to develop the techniques and provide the support that I have been taking full advantage of.
A lot of people have said to me that they do not know how they would cope if they were having to deal with this disease. I hope they are never put to the test, but I know it makes an enormous difference when on the receiving end to know that I have the support of a large body of people. Donations are a good way to register this support! I am not going to do something daft like jump out of a perfectly serviceable aircraft, or run a marathon, but if just a few of you feel the urge to put your money where your mouth is, we can make a difference for those who follow.
To all those who have already donated, thank you for your generosity. Others, please feel free to donate now! No donation is too small nor too late! If you are a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.
Simon
You can't crack me, I'm a rubber duck!