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Howdy, Stranger!

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My introduction

Hi everyone, my name is Steve.

I was a recipient of donated stem cells in January 2013 as a conclusion to my treatment for Acute Lymphoblastic Leukaemia (ALL), which I was diagnosed with in late August 2012. I'd been feeling low on energy, tired, had dizzy spells and my vision was blurred at times. Knowing I didn't feel right, I went to the doctors and had an ECG and blood test. The ECG was fine, but the blood test revealed that my white cell count was very low. Further investigation by means of a bone marrow biopsy the following week revealed I had ALL. At the time I was working full time as a project manager, working on the new Terminal 2b project at Heathrow and had thought that my fatigue was due to the amount of commuting I was doing, with long working days.

I started treatment at Leicester Royal Infirmary a few days after being diagnosed at the beginning of September 2012, which consisted of progressively harder courses of chemotherapy. This took place over the 3 months leading to that Christmas. I was then told that a suitable donor had been located and I had a Matched Unrelated Donor transplant early in the new year.

My transplant went through without any major complications, though I did develop a fungal infection on my tongue which left me unable to eat for a couple of weeks and indeed, my appetite was very slow coming back afterwards. Over the course of my treatment I lost about 3 stones in total.

I guess I had a kick start about 4 months after my transplant, when I was put onto a high dose of steroids to combat some skin GvHD that had developed. Within a week of starting the steroids, my appetite came back and my energy levels increased. Since then I haven't really looked back.

As part of my ‘self-therapy’ I started writing a blog shortly after my treatment started. I found that putting pen to paper helped me deal with what I was going through and keep friends and relatives informed of my progress, without dealing directly with them all separately.

I am more or less fully recovered, though am still having ongoing treatment to deal with the skin GvHD which is the only major complication I’ve had. The photophoresis treatment I’m having for the GvHD is now reducing in frequency as it appears to be working and there is also a plan in place to reduce my immuno suppression which I hope will give me more freedom to return to more normal activities.

My employer has been incredibly understanding and I returned to work in July last year, though on a light duty basis and generally working from home. I've just completed building a home office in the form of a log cabin in the garden which should help separate work life from home life, whilst allowing me to feel like I’m making a worthwhile contribution to the company.

I am also committed to fundraising for blood cancer charities and now intend to do one major event each year, around the anniversary of my diagnosis. Last September I climbed Mount Snowdon with 24 friends and family and together with a bucket shake at a premiership rugby match, we raised just over £6000. The climb was incredibly tough for me and made me realise that my fitness was nowhere near what it had been before my illness, but the sense of achievement at reaching the summit was overwhelming.

This year I am planning to cycle from Leicester (where I was treated) to Northampton (where I was diagnosed) using the tow paths of the Grand Union canal network which is about 58 miles. Hopefully I will be able to raise more funds for charity and intend to split the proceeds equally between Anthony Nolan and Leukaemia and Lymphoma Research. Planning is in the early stages, but I hope to do he ride in September around the second anniversary of starting treatment.

As per my separate post, I was recently accepted as a community champion on this forum and I look forward to supporting others through their treatment.

All the best,

Steve.

Comments

  • Hi Steve, I too was treated at LRI. I was lucky enough to have my brother as a match for a bmt. It's 21 years in June since I had my transplant and I will be 50 in September. In recognition I am hoping to get 2150 new people on the register. Congratulations on your 2 year anniversary and hope like myself you have many more to come.
  • Wow, 21 years - that's fantastic Tracey! I hope I have as many years to look forward to. I'm 50 in two years time so if I can get another 21+ years of life I'll be very happy.

    You must have been one of the early patients in the transplant unit when it was new. I was part of the design team that designed the Windsor building when I first started work as a trainee electrical engineer. I was then involved supervising the contractors as they built it and remember walking round the bone marrow transplant unit as it was being built.

    I never thought I'd end up back there as a patient and it was weird being in a unit that I'd seen develop from the drawing board! I'm still involved in building hospitals so if I work on any more BMTU's at least I can include a patients perspective in the design!

    Thanks for your good wishes on my 2nd anniversary and I wish you well, with many more years of good health.

    Steve

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