I was diagnosed in late summer 2014, when I experienced some sharp and persistent abdominal pain. This was initially diagnosed as a bowel problem, and was prescribed anitobiotics. When it did not respond to treatment, I was referred to RSCH Guildford for further investigation. A CT scan showed a massive stomach tumour, described as a […]Continue reading
A presentation by patient Jim Watson on his experience and the importance of good patient / doctor communication
Hello, my name is Jane Lochrie. For as long as I can remember I’ve always been a little plump, constantly tired and sleeping. It was a standard joke about “how long could Jane stay awake?”. As life went on; career, marriage, children…. there was always an excuse about why I was fat. Everybody; doctor, friends, […]Continue reading
We held our second “Virtual” GCUK Patient & Carer meeting in on 14th October 2021 and were joined by seventy-five patients and carers to see and hear presentations from our specialist friends: Dr Carys Morgn & Dr Ramesh Bulusu who gave a fantastic presentation on the use of “Radiotherapy in GIST Cancer“. GIST patient carer and […]Continue reading
I am 75 years old and was diagnosed with a Gastrointestinal Stromal Tumour (GIST) May / June 2021. My tumour is 21cm long by 21cms wide. I started experiencing problems at the end of March 2021 and was having bowel issues and not going to the toilet. My wife phoned the GP which led to […]Continue reading
I was diagnosed in 2016 with diabetes and high blood pressure so decided to lose weight and eat healthy. By the beginning of 2020 I had lost almost 6 stone and my diabetes was in remission and my blood pressure normal. In March 2020 at the beginning of the COVID lockdown I started using a […]Continue reading
I am a 51 year old mother to our 10 year old son and currently working as a self employed commercial photographer and artist. I live in Nottingham. In the past I gained a post graduate diploma in psychotherapy with Birmingham University. I also worked for NHS Direct for 5 years as a Health Information […]Continue reading
We held our very first “Virtual” patient & Carer meeting in April and one hundred people joined us to see and hear presentations from our specialist friends:
- Dr Ioanna Nixon and Professor Robin Jones who presented how they have been Addressing the special needs of GIST cancer patients during the pandemic and lockdown.
- PAWS-GIST patient Vicky Rockingham MBE and Macmillan Adviser Wendy Unsworth, who presented on Continuing to work when diagnosed with GIST.
Each session was followed by a Q&A session with the specialists.
“My story about GIST cancer and how I am fighting it” January 2021. My advanced GIST sarcoma (Exon 11 positive) is in the soft tissue of my abdomen, a rare type of cancer and it is known as sarcoma. There is currently no cure, where surgery is not possible. Any treatment you get is to […]Continue reading