It has been 6 years 8 months since I was diagnosed ( May 2009) with a GIST in the wall of my stomach very close to the Oesophagus. It was the size of a golf ball.
This week, on Monday (January 2016) I had the all clear from the hospital and have now been signed off, with the reassurance that I can make an appointment with the Oncologist whenever I deem it necessary. I am a 62 year old retired, relatively fit female who lives a normal life, looking after grandchildren at least once a month, enjoys gardening, walking and go skiing with my husband, twice a year if we can. My present Oncologist has told me that there is no reason to think that a GIST will return.
A brief history leading up to present day (February 2016):
I had held a post of responsibility in a college for a number of years and looking back, I had put up with re-occurring issues with my stomach on a number of occasions, but none that took me to the doctors. I very rarely missed a day off work. On this occasion I had visited the doctor as I was suffering with very severe stomach cramps, had vomited some blood and my stools were black. I felt drained and very weak. My pulse was racing.
My doctor was great. He arranged for me to be seen in hospital immediately. I was given an endoscopy within 2 days which identified the GIST and ulcers which had recently bled. Two weeks later, due to the location of the GIST being so close to the Oesophagus I had a total gastrectomy. My surgeon assured me that as long as I ate little and often I could outlive him. (We were about the same age of 56). After two months, my Oncologist prescribed me with IMATINIB. Two years of the drug was the recommended treatment for Adjuvent therapy to prevent or reduce the chances of GIST cells reforming . NICE allowed me to receive a further year of IMATINIB ( Glivec) because of the location of the GIST and high mitotic rate.
I called this my magic pill.
I didn't like taking it, but eventually learned that it was better to take it in the evening after a meal. With no stomach I had more problems with my diet or at least taking in enough calories to sustain energy. I lost over two stones and subsequently had to buy a whole new wardrobe ( that was a positive!) My employer was very supportive. I was off work for one year and went back to my old position on a phased return. Although most colleagues thought I should have taken early retirement, I wanted to retire 'in good health'. I worked for two more years and retired at 59. It also coincided with the end of the course of treatment: the end of my magic pill, which seemed appropriate.
My husband has since retired and we have moved house to a new part of the country, where we are nearer our sons and their wives and our grandchildren. Life goes on as normal. I just look a lot thinner, but that has the advantage of being able to climb hills without any problem. ( I've been up Skiddaw since)
My thanks go to all the medical staff for all the professional care and support that I have received in Singleton hospital and more recently at The Royal Devon and Exeter hospital, and to my husband who has looked after me and put up with all my problems during my recovery and subsequent rehabilitation.
(Posted 2nd Feb 2016)
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