I spent yesterday in Cardiff, for a patients/carers meeting with GIST Support UK.
GIST (“Gastrointestinal Stromal Tumour”) is a particularly rare form of cancer, which I was diagnosed with just over three years ago. Because it is a sarcoma, not the more usual form of cancer, carcinoma, much of what is popularly understood by the term “cancer” simply does not apply. Because it is so rare (even most GP’s and nurses have never heard of it), it really needs to be treated in specialist sarcoma centres. For all these reasons, people who have been diagnosed with GIST are in particular need of support – to meet and hear from others in similar situations, and to keep abreast with the latest developments in research and treatment for the condition.
GIST support UK provides this support in different ways. Most obviously, it has a website which summarises the key information currently available – and lists the specialist centres with appropriate expertise in treating the condition. It also has an email Listserve group, where people with GIST can tell their stories, ask for or offer help and advice, or report on new developments from the world of science. We also host a patients’/carers’ meeting twice a year in different parts of the country, where people can get this personal contact face to face – and get reports on the best current knowledge, from experts in the field.
We do not simply sit back and receive the result of research – we also contribute to it, directly. In conjunction with the Royal Marsden, we host a GIST tissue bank, where tumours that have been surgically removed from people with GIST, are stored and available for clinical research. We also directly fund researchers working in the field, and pay for patient advocates to participate in academic conferences, contributing the voice of patient experience. It is notable, for instance, that one recent academic paper on the current best practice by leading UK researchers, included in the acknowledgements, the value of contributions by two of our leading members.
I came across the website from a Googe search immediately after my initial diagnosis. I then signed up to the Listserve group, which I have both learned from and contributed to, and have since attended three of the patient meetings, to my immense benefit. I was flattered at yesterday’s meeting to be invited to join the board of trustees.
All of this good work, inevitably costs money., for which we have an active fundraising team. I am not a great fundraiser myself, but from time to time I will be sharing information on GIST Support UK fundraising activities. When I do, please consider contributing.