Garry's story

My name is Garry, I live in Cornwall with my wife who is my carer.

My sweet daughter Robyn thinks I should share my super long amazing journey which my family and I have been dealing with, as I’m on my 4th cancer journey which we all have been fighting, this is journey dealing cancer for over 20 years

When I first came across GIST cancer was when back 2015/16...

I was found to have a soft tissue sarcoma, which was in very difficult place to remove. The NHS surgeons were not very happy about trying to operate on me as they didn’t know much about GIST cancers at that time the doctors suggested we should perhaps go home do some research about GIST cancer

This when we got learn about a surgeon in London who had been to the USA and had experience with dealing of GIST cancer. We emailed him asking for some advice on how to deal with GIST cancer, after about a fortnight we were contacted by his office wanting more information, permission to contact my cancer team.

The next thing I’m told was that I had to go to Bristol hospital to meet Professor Robert Longman, who at the time was working from Harley Street London.

Well, after the meeting it was all systems go...

I was going to let Professor Longman and his team loose on me, which ended in me having life changing surgery, with a very high risk of dying during the operation.

Well I didn’t die! I had the surgery which I was told had been successful in removing all the cancer, and I was now free from GIST cancer, and I didn’t need any follow up treatment, as they had removed all the body parts that were affected by the GIST cancer.

So that was it I thought, but after about 12 months...

I was having real issues with my left leg and hip, I was getting pain in my leg I called it toothache pain in my leg.
Well as time went by the pain was no better, I wasn’t sure what make of it all as next thing was the hip starting hurting, which I thought was hip wear as I used to do a lot of running before the 1st cancer which started around 2002/3 but I didn’t know it was can way back then, but that’s a different story about an entirely different type of cancer. After 20 years of fighting cancer, on one occasion I was told to say my good byes before surgery, as I'm not going to make off the operating table.

Then breaking my back in 3 place and told I won't walk again, but with the aid of crutches and a lot of hard work and sheer determination I walked my daughter down the aisle 18 months ago.  Last summer spent months in hospital, as I had to fed through a central line as my small and large bowels got blocked, due to so many different operations.

Anyway, this pain I was having in my leg was getting no better, so I kept on to my cancer team who did so bloods an x-ray but drew a blank. They said it not cancer or anything to do with the GIST cancer as my doctors said they are sure that a soft tissue sarcoma cancer can’t have spread to my bones, as GIST bone cancer is a different cancer.

Well, after many months...

It was found that the GIST in my hip had spread from the original soft tissue sarcoma as they didn’t do anything to preventative follow up treatments the bone GIST cancer has just got a firm hold of me, so now well established, meaning it’s now an inoperable cancer so I’m on some kind of drug trying to keep it from going mad.