Tess and Gordon Brown
Tess and her husband Gordon became members of MDS UK in September 2014, and then ambassadors for the charity. Gordon was diagnosed with MDS in October 2010 following 2 years of progressive anaemia. He was then put on a “watch and wait" regime which lasted until September 2014, when Gordon became blood transfusion dependent.
Tess says:
“We knew very little about MDS and, in trying to find out as much as we could about it, were fortunate to discover MDS UK. We became members in September 2014 and started going to our local Bournemouth Patient Support Group meetings. These were an invaluable source of support, finding out about different coping mechanisms and gaining a good knowledge about the illness and current treatments from the specialists who gave presentations at the meetings.”
Unfortunately, in October 2023 Gordon’s haemoglobin level fell from 102 to 51. A subsequent bone marrow biopsy showed that his MDS had progressed to AML and, in December, he went into hospital for his first course of Azacitidine injections and oral Venetoclax, which led to remission.
Gordon completed 6 cycles of treatment and was faced with a choice as to go for a stem cell transplant or continue on the supportive treatment, which he was tolerating well. His consultant felt that at 74 the risks of possible complications - with no guarantee of a good quality of life afterwards - outweighed the advantage. Tess and Gordon had two additional opinions from consultants at UCLH and Southampton and both felt the same, although didn’t rule out him having a transplant. Having decided that quality of life was the most important factor, Gordon chose to stay with supportive treatment and continued to do well.
Early on December 3rd 2024 Gordon was admitted to hospital with severe chest pains and signs of a serious infection. He was stable at first, but as the day went on things deteriorated, and because of his leukaemia and very low immunity his body was unable to overcome the infection. Gordon died just after 10pm that day.
Gordon is a huge miss for his calm, wise counsel and great sense of humour, which came to the fore when hosting online support meetings with Tess and providing peer-to-peer support. We are delighted that Tess is happy to continue as an MDS UK Ambassador.
