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A Burkitt's lymphoma story

Grandparents and children sharing tips and stories

From Sarah Taylor in Wiltshire

What is Burkitt's lymphoma anyway? I asked myself the very same question when, in February 2006 at the tender age of 33, I was diagnosed with this nasty little disease. Burkitt's is a high grade non Hodgkin's lymphoma which affects the lymphatic system. Statistically the chances of a woman of my age having Burkitt's in the western world are around one in 1.25 million. The fact that Burkitt's affects all cells is what makes it different from any other cancer and is also why it spreads so quickly.

I was at my local swimming pool one Thursday afternoon, with my sister. We were quite casually discussing a peculiar rash that had appeared on my legs. I hadn't given it much more thought after that. Two days later, I was in hospital being told I had cancer. From swimming to dying in just three days! Of all the symptoms of a lymphoma, I had just a few - pain in my bones (although this was very intermittent), a high temperature and excessive bleeding which included a nose bleed and of course the rash (which, as it turned out were hundreds of tiny bruises). Other than that I had just been feeling unwell, as if I had a virus. When the doctor in A&E came in to break the news to me, I felt as though a brick had hit the pit of my stomach and I temporarily lost touch of reality. While they were talking, my head was awash with chaotic thoughts.

I was admitted that night and after two days on the medical assessment ward, I was taken to William Budd, which is the cancer ward at the Royal United Hospital, Bath. For the next six months, Willy Budd was to be my home, separated only by a few nights at home with my family and a very unfortunate five week spell in ITU with neutropenic sepsis, fungal pneumonia, adult respiratory distress syndrome, pericardial effusion (fluid around the heart), DVT and a pneumothorax (collapsed lung).

Three years on, I still struggle to come to terms with what happened. Not so much with the cancer side of things, but more so the complications which led to my admittance to the intensive care unit. It was an extremely traumatic experience which I think I will carry around with me forever.

On the up side, I have been in remission now for almost three years. As time slips by, it does get easier. I find the sunshine helps! I still see many of the staff who took such great care of me during my time in hospital and it is a great comfort to know they are just a phone call away. It would be nice sometimes to have someone to talk to who has had a similar experience, but I have yet to come across that person. I'm beginning to wonder if I ever will. In the meantime, I do my best to look forward rather than back and to take each day as it comes.

More information

On CancerHelp UK there is more information about Burkitt's lymphoma.

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Updated: 28 September 2009