Vicky's Story (PAWS-GIST Patient)
Living with Wild-Type GIST Cancer – Vicky Rockingham
On Christmas Eve 2007, I had a tumour removed in an emergency operation after an ulcer ruptured in my stomach. I was lucky to survive the operation. My sons were only 4 years old and 22 months at the time – one minute their mum was there, the next she was gone for 5 days.
I was signed off work for six weeks whilst I recovered, but just as I returned to work, I learnt that the tumour was malignant, a very rare wild-type Gastro-Intestinal Stromal Tumour (GIST), a type of Sarcoma cancer. At the time, there was no further treatment offered and so I was monitored via regular CT scans. Although initially very shocked with the diagnosis, I continued to work part time. I didn’t seek any counselling or support at the time – I just wanted to get on with my life, return to normal and focus on each day.
In November 2011, I discovered that the cancer had retuned in my liver. I remember being shocked and then extremely angry. Again, I didn’t seek counselling and didn’t take any time off work. I was referred to a surgeon but they decided they could not operate as an MRI scan showed that my liver was ‘peppered’ with tiny tumours. By this point, there were two oral chemotherapy drugs available, Imatinib and Sunitinib. The first was ineffective and the second had a limited effect.
In 2014 I was contacted by Jayne Bressington who had started PAWS-GIST in the UK, Jayne invited me to attend the first PAWS-Gist Clinic at Addensbrooke’s Hospital, Cambridge. This was the first time I met other PAWS-GIST patients and I realised how beneficial it was to meet others who were going through a similar experience to myself. I also learnt more about my ‘wild-type’ GIST, that it was SDH (Succinate Dehydrogenase) deficient GIST.
By February 2015, I had 14 tumours and it was clear that the second drug was becoming ineffective so I moved onto a drug called Regorafenib, which was available on the Cancer Drug Fund. At the time, there was debate over the cost of the Cancer Drug Fund and Regorafenib was withdrawn as it was considered too costly. I became involved in a social media campaign, organised by Jayne Bressington, called #100000voices, to petition the Government to reconsider this decision. We received over 100,000 signatures on the petition, which was delivered to Number 10 Downing Street to qualify for a debate in parliament. The drug was one of the few to be reinstated back onto the cancer drug fund. In June 2017, I was invited by NICE (National Institute for Health and Care Excellence) to attend as an Expert Patient to provide my perspective of the medication, whilst they determined whether Regorafenib should be made available to all patients living in England. In November 2017, NICE concluded that it should be made available.
I have continued to work both part-time and full time. I have had a number of line managers and although they all have different styles of management, they’ve all been supportive in different ways. I’m very lucky that I love my job and no-one has prevented me from taking on work, if anything, I’ve been encouraged. Most have regularly checked in with me asking how I am, rather than are you ok. For a number of years following my diagnosis, I didn’t really think about my career or where my future career path lay as I couldn’t really focus on the future. Gradually, as time went on, I realised that I could focus on new roles and have been successful in interviews, despite people knowing my diagnosis.
In 2018, I was nominated for an MBE by my Deputy Director. This was for my work in the Environment and Charity work. I was completely overwhelmed and extremely honoured. This nomination cemented the support I have always felt at work.
I was on Regorafenib for 7 years during which it mostly stabilised my tumours. However, eventually, I was found to have internal bleeding so I was taken off the drug. I’ve been off treatment for the last 2 years.
I actually don’t worry too much about not being on treatment for the following reasons:
• My mutation is very slow growing but I appreciate that could change;
• I nearly lost my life in Dec 2007 when my initial GIST was removed so every day is a bonus;
• I’ve been able to raise my boys and see them grow into fabulous young men that I am so proud of (I also have 2 fabulous grown-up step kids);
• My network of friends have been amazing- some of them have had health issues, loss, difficult issues, so we support one another;
• I accepted my diagnosis a long time ago - I knew I would never be NED so I learned to live with it;
• After 10 years of managing side effects, I am loving not having any of these (apart from fatigue, brain fog but that’s probably my age!);
• I exercise regularly, in the morning, 6 days a week - it’s not easy, my 5k runs can ba struggle, but I love getting out early, saying morning to the dog walkers, hearing the birds and I always feel better afterwards. Even just a 30 minute walk can help.
I know my tumours are growing, I have three near my original scar that I can feel but I try to just live in the moment and not think too far ahead. Life isn’t a bed of roses (elderly mum to manage) but I just deal with one thing at a time.
Of course, feeling well has a big influence on this - maybe I will have a different perspective if I’m in pain but I’m just recognising that this is a good period health wise so I’m determined to enjoy it and be grateful for what I have. I’m also one of those annoying people who sees the cup half full!
My other tips are:
1. Make sure you’re being seen by a GIST specialist.
2. Any good consultant will support you in looking for a second opinion, if you feel you need it – a quote from my first superb oncologist.
3. You may become the expert – my consultant was learning with me about Regorafenib. He often asked me “what shall we do next?”. It’s very empowering but could be frightening. We’re all individual so you need to share with your consultant what works for you.
4. It’s ok to not be ok. Even as a ‘cup half full person’ who has accepted their diagnosis, I still have my down days. The initial diagnosis for me was the worst part and Scanaxiety is normal. Do reach out to others when you need to - it really does help. There are many support services – Macmillan Cancer Support is a good place to start.
5. Exercise regularly. Exercise really does help. It doesn’t have to be strenuous. Find something you enjoy that fits into your life. Try and encourage others to join you so that you’ll be less likely to find excuses not to do it.
6. If you work, remember cancer is a disability and you are covered by the Disability Act for the remainder of your life, even if you have no evidence of disease (NED).
Ask your employer for reasonable adjustments but work with them to suggest ideas and find solutions. Macmillan website has lots of useful advice and e-learning for line managers; advice can also be provided to line managers via their hotline (Tel 0808 808 0000).
I have also found fund-raising helpful. It’s allowed me to give something back, encouraged me to stay fit and challenge myself, enabled my supportive family and friends to challenge themselves too.
You can find out more at my justgiving fundraising page