Michelle's Story (PAWS-GIST Patient)
So where do I start with my PAWS-GIST journey...
Firstly, it’s important to say that reflecting on living with cancer is a strange thing for me to do as it’s only a small part of who I am and how I see myself, albeit it an important part. Secondly, my story so far is a long one… 16 years and counting!
When I was 22, I called in to my local GP’s to register as I’d not gotten round to doing this after moving to Sheffield after finishing uni. I’d been feeling a little bit unwell for a while, mostly tired, night sweats and breathless at times, but I put this down to being a busy student and hadn’t thought much of it. I was 22 after all, how could I possibly be ill? So, whilst I was at the doctors, I asked if I could book an appointment and luckily, they had an appointment available right then. I saw an amazing GP who took some bloods and said that he’d be back in touch if there were any concerns. He called me back the same day and said that he needed to see me about the blood results. I was told that I was severely anaemic, and he wanted to refer me to the hospital for further investigation. I remember seeing a few different consultants before eventually having an ultrasound which detected a tumour on my stomach. This was followed by a gastro endoscopy and biopsy, after which I was told that I had cancer. I was shocked and remember telling family and friends who also couldn’t believe it, but mostly I remember thinking ‘what now?’
I was later told that the tumour on my stomach was a rare form of cancer called a Gastrointestinal Stromal Tumour (GIST). Further MRI’s had also shown a tumour located in my lower abdomen and some shadows on my liver. Just before my 23rd birthday I had a partial gastrectomy which removed the primary GIST and two thirds of my stomach. The tumour in my lower abdomen was also successfully removed and a biopsy had been taken of my liver. I then found out that tumour taken from my lower abdomen was another rare tumour called a paraganglioma and that the biopsy result had shown that I had GIST metastatic lesions on my liver. I was told from the beginning that the GIST affecting my liver was inoperable and incurable, and I also knew from my own research that treatment options were limited. So, I was again thinking ‘what now?’
Recovery from surgery took time. I lost a lot of weight and had to build up to eating more but I was keen to get back to my life, so I built up my strength and started a new job in Doncaster Prison 3-month post op. At the time, I remember people telling me how strong and positive I was, but looking back I’ve realised that I was just young, somewhat naïve and I saw cancer as a bit of an inconvenience that I didn’t have time for.
My care was taken over by Weston Park Hospital in Sheffield who have been amazing throughout, and I was advised to start taking a form of oral chemotherapy called Imatinib to inhibit any further disease progression. We now know that PAWS GIST patients are non-responsive to Imatinib, but in 2008 we didn’t have this information and there were no other available options on the NHS. I took this treatment for around 6 months, during which I received few side effects and the ones that I had were tolerable. However, this didn’t last for long, as scans showed that the lesions on my liver were progressing. My daily dose was doubled and I started to experience challenging side effects. My whole appearance changed due to an aggressive rash that I had and after 6 months, my oncologist made the decision to stop treatment due to the impact that the treatment was having. At the time the alternative treatment option, Sunitinib, was not available on the NHS so this was applied for and granted… another drug, another range of side effects. After 18 months I was admitted to hospital with heart failure due to a build up of fluid on my lungs, but again I didn’t really have time for this so after a week in hospital I went back to my job in the prison.
I had a treatment break for 18 months before recommencing Sunitinib but after being back on treatment for another 18 months, and as I was approaching my 30th birthday I started to become ill. This resulted in being taken in and out of hospital over a 3-month period and having to take some time off work (Luckily I was just about well enough to go on holiday to Ibiza for my 30th birthday).
At this point it was time for my second treatment break and that was 9 years ago. I’ve since had regular scans to monitor my condition in the absence of any medication to control the disease, initially 3 monthly, then 6 monthly, and now 12 monthly. However, with each scan, has come the same discussion with my oncologist – no disease progression. Unfortunately, a further paraganglioma has since been located in my neck but this is monitored alongside the GIST and is also stable.
My family have all been through genetic testing to see if they carry the SDH deficient gene that is associated with this disease. Unfortunately, my sister is also a carrier, but she has not developed any problems so far and is also monitored by the hospital.
I’m 38 now and often think about how cancer has affected my life… in some good ways and in some bad.
There have been extremely difficult times, but I’ve learned a lot about myself because of this condition and I’m thankful for a number of things. I was invited to the first PAWS GIST clinic, and this was the first time that I’d met anyone else who was affected by this disease and I remember how similar all our stories had been. I’ve since observed the commitment and dedication that the PAWS GIST team have towards funding research and support for people that are affected by GIST.
I’ve learned:
- to slow down now when my body tells me to , even though this is something that I still struggle with at times.
- to appreciate the things that I have and try and get the most out of my life – I don’t think twice about booking my next holiday, going out for a lovely meal for no occasion at all, going hiking in the Peaks and inevitably getting lost, going to the theatre to see a show that I’ve never heard of, or dipping out on plans that I don’t really want to do.
I mentioned at the beginning of my story that cancer is a part of my life and always will be, but my life is made up of so many other fantastic things.
Whilst living with cancer, I’ve:
- become an aunty to my 2 gorgeous nephews
- become a dog mum to my 2 pooches
- been back to university a further 2 times
- qualified as a Cognitive Behavioural Psychotherapist within the NHS,
- met my partner who I’ve now been with 4 and a half years.
So yes, cancer continues to create a lot of uncertainty for me and my family, but this doesn’t mean that I’m unable to live my life in the way that I want. After all, none of us can really know what the future holds so we might as well enjoy the time that we have now.