In Sept 2021 I had a right lung pneumonectomy followed by 5 weeks in the hospital and almost a month in ICU (intensive care unit) for a herniation of the heart, pneumonia, and an infection. In August 2022, I started to get some back pain and was referred for an MRI Spine. Then an FDG-PET scan showed multiple sites of bone metastases including my spine, hips, shoulder, left leg, and the base of my skull. This is where I believe self-advocacy comes in. At this point, my local cancer team hadn’t consulted with The Royal Free London NET Centre of Excellence and as a result, told me that only radiotherapy to control pain was an option for me … and that my prognosis was around 12 months. Naturally, I couldn’t accept this. I rang The Royal Free London myself and spoke with Prof Caplin, head of the team. We agreed to try both Lanreotide monthly injections and Everolimus, an oral targeted therapy. I didn’t tolerate Lanreotide very well so came off it – but I’ve tolerated Everolimus well so far and at the time of writing (August 2024) I remain on it. Today, I still take some strong opioids for pain relief but I’m living a fairly normal life. My employer has been fantastic. They understand I have good days and bad days, and hospital appointments – and being able to work keeps me mentally strong. I used to be a keen footballer and cricketer but these days I enjoy watching rather than playing – but that doesn’t stop me from fundraising at these events too. I also enjoy exploring our beautiful coastline and countryside with my partner, Gemma, and our dog, Arnold. Being in nature definitely helps me. So why be an Ambassador? Well, I find it incredible that our NHS still has no formal recognised pathway for neuroendocrine cancer patients. There should be a structured approach to diagnosis, treatment, and follow-up in place, as there are with other, more widely recognised cancers. In my view, it’s only earlier diagnoses that are going to make a difference to us – and we definitely need the ‘age box’ removed from the tick list. I was 34 and although I ticked all the other boxes for a cancer referral, it didn’t happen because I was ‘an under 40 normally fit and healthy person.’ I’m looking forward to helping try to change this.
Thank you, Chris! We’re so happy to have you onboard as a Neuroendocrine Cancer UK Ambassador!
We're always on the lookout for people who are willing to share their experiences with neuroendocrine cancer. If you would like to share yours, please CLICK HERE.
www.neuroendocrinecancer.org.uk
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