Tammy's story

In April 2011 I was diagnosed with GIST...

There hadn’t been any major symptoms, just one night I couldn’t pee despite having a desperate need to. This resulted in a very painful 10 hours or so trying, and being unable to pee as my bladder filled and filled. I’ve never had children, but I think the pain I felt that night is the closest thing I’ll get to understanding what labour must be like! Long story short I ended up driving myself to St George’s A&E in Tooting and after being given a catheter to walk around with for a few weeks (there’s an odd pleasure in being able to pee in a pub while sitting at the table), they pulled me in for a meeting, and I was told I had a GIST tumour. I knew something was up when they locked all the doors before the meeting. I thought, ‘Ey up, this seems serious’. However, the way it was presented to me was that there was this tumour which wasn’t really regarded as a real cancer, that they would remove and stitch me back together and life would be fine. I really didn’t ask a lot of questions, perhaps being relatively young at the time (39), or maybe just because of my laissez-faire attitude, and the surgeon seemed pretty relaxed about it, so I thought while significant it wasn’t the end of the world. I mean don’t get me wrong, it was still a shock, but I don’t recall feeling as devastated as some may have thought, because I didn’t feel or understand it may be life-threatening at that time.

So, the operation happened, and...

I remember one of the registrars coming into my room and kind of puffing out her cheeks to indicate how big the op had been. I’m not one for details but they’d had to go in the front and the back to get at it and get it out. Anyway, I healed pretty well, and was given a temporary ileostomy would be reversed soon.

That’s when the fun started really!

So, at no point at this stage did anyone, from my memory at least, mention LARS (Lower anterior resection syndrome). As I said I’m not one for details, and it came as a bit of a shock to me when the registrar told me at a pre-op consultation before the ileostomy reversal operation, that my rectum had been removed. The chap was like, “so when we removed your rectum,” and I looked at my friend who was with me and said, “Excuse me, when you did what?”. It was almost comedic. I hadn’t understood, or maybe had been told, but it hadn’t sunk in, that that’s what they’d had to do to get the tumour out.
So, since that op and prior to getting my stoma back in Sept 2023 which I fought for, I had to deal with Lars, which basically means you have limited control of your bowels. It affects people differently and I won’t go into detail, but suffice to say dealing with the GIST was the easy part.

So, having been on adjuvant Imatinib for 3 years, then coming off I was re-diagnosed with GIST in 2016 at Cheltenham Royal Hospital. Having thought I’d been cured with the first op, this was the first time I understood this thing may be life-threatening, and of course I was upset. But I went back on Imatinib and it did an amazing job for 5 years until in 2021 they decided to operate again this time at the Queen Elizabeth. I’ll always remember it for the amount of medical staff in military uniform – army and navy, being a teaching hospital for the forces. So again, off I trotted after that op, which this time the surgeon was clear to explain to me was most definitely not a cure. So, it proved, and in Jun 22 the tumours reappeared, so I was put on Sunitinib. Unfortunately, by now the LARS had got so bad that I was struggling in other respects which led to me having to stop and start the Sunitinib. As mentioned I had my stoma reinstated recently which has been an utter blessing, and in hindsight I would never have parted with it if I’d known how impactful the initial operation was going to be. But we are as they say where we are. My consultant made the decision post that operation to put me on Regorafenib because the tumours had grown and are now multi-focal. Further surgery is off the cards, which quite frankly I’m fine with. I’ve seen enough knives for this lifetime.

The great news is that...

My last scans show that the Regorafenib is holding the tumours at bay so long may that last. I am now however suffering with a shortness of breath issue which has been described as not that normal, but can sometimes just happen due to a change in physiology brought on by taking the medication. So life is a bit limited, but to be honest I still remain pretty upbeat and know that even though I may not make it to pension age necessarily (though who will as it keeps getting extended ), that my amazing team at Cheltenham and beyond are doing all they can to keep me around, so I feel inordinately grateful to them and to the Macmillan nurses who have provided invaluable support in multiple areas including benefits etc. And also, to the amazing volunteers that run Gist UK and keep those of us that can’t make conferences in touch with what’s going on with the brilliant newsletter, so thank you!

I know that it’s my turn to give back and I’m trying to think of some kind of fundraising idea that doesn’t involve exercise, so when I come up with that I’ll be trying to pull in some pennies for GIST UK so they can continue their brilliant work in trying to find further treatment solutions for us all and keeping us all connected.