Simon Cartwright is the only person in the UK under 50 years old to have squamous cell carcinoma of the sinus, an incredibly rare form of facial cancer. 

“I was diagnosed with a rare squamous cell carcinoma five years ago, at the age of 37. During the following four years, I underwent countless major surgeries, some lasting more than 10 hours, huge amounts of radiotherapy and chemotherapy, and most recently CyberKnife radiotherapy, a new and advanced treatment that provides a non-invasive alternative to surgery. Each time the cancer would be halted for a short period of time but, within a few months, it always came back.  

“Following my last course of chemotherapy in December last year, the cancer was deemed to be controllable rather than curable. It was at this point that I was put in contact with Ria, one of the Clinical Nurse Specialists at Isabel Hospice, to help me with pain and symptom management. At the time, the term ‘palliative care’ was hard to stomach. It felt like the beginning of the end, but I agreed as I knew that I needed some help with the pain if I was going to be able to maintain a quality of life with my wife and our two young children. 

“I met Ria, who came out to our house and she was just fantastic. Within a few days my pain was much better controlled and I was able to enjoy Christmas with my family, which at this stage of my diagnosis was incredibly important to me. My cancer is so rare that they’d never seen a case like mine before, but they put together a plan and for a while, it worked. But then came a period when the pain relief wasn’t working, so Ria spoke to me about becoming an in-patient for a short while so they could watch over me 24/7 and try some different things.  

“Coming to the Hospice that first time just blew me away. When you think of a hospice, you think about the last few days of your life. But it’s so much more than that. From the doctors to the healthcare assistants, to the volunteers, they all work as one, and every single person is incredible. Once again, this was game-changing and very quickly I was back on an even keel – even able to enjoy a trip on the Eurostar to Belgium for a few days over half term, something that a few weeks previously wouldn’t have been possible. 

“The cancer has progressed rapidly since then. My needs have changed hugely, and the doctors and nurses have been so responsive to it, even though it’s a case they haven’t come across before. The care I’ve received every time has been wonderful and whilst I have always been really well looked after by the teams at the Royal London and St Barts, given the stage that I’m at, I would choose the Hospice over the hospital every time. 

“A few weeks ago, I was at home and had a huge bleed and was very close to the end. We called the district nurses and they couldn’t stop it, so they called an ambulance and I was taken to Harlow hospital and then Broomfield in Chelmsford, but no-one really knew what to do. In the end, I discharged myself and was able to come to the In-patient Unit, where the people all knew me and were able to help solve the problem. 

“To me, it highlighted that if the Hospice didn’t exist, my pain relief and symptom management would be placed elsewhere, with people who don’t have the same level of expertise. This cancer has destroyed half of my face – just imagine that with no pain relief. At Isabel, there is freedom to act as they see fit; if they have an idea then they can try it and you get the sense they all think about it in their sleep. It’s impossible to think how I’d go on without their incredible care and support. If it wasn’t available, I would have given up a long time ago. 

“They’ve also been brilliant with my two children, Izzy and Rupert, as well as supporting my wife, Sarah. I miss them all desperately when I’m here, it’s the hardest part, but if I was in hospital, I’d barely get to see them at all. Visiting hours would be limited to 2-4pm, and I couldn’t bear that. The children can come here whenever they want to and are loved by everyone. Every member of staff here knows my family and there’s something a bit special about that. Everyone always goes the extra mile to help create special times for us as a family and nothing is too much trouble. We have all received counselling support from the team at Isabel, which has been invaluable to all of us.  

“I am spending more and more time at the In-patient Unit, as the nature of my cancer is very unpredictable and whilst nothing beats being in your own bed, nothing also beats feeling safe, secure and well looked after by an incredible group of people at what is such a difficult time for all of us. I cried when palliative care was first mentioned to me, but my whole understanding of what that actually means, and the difference it can make, has completely turned around. Hospices are not just places to die, although people do come here for their final days, and all being well, I will too. Despite my situation, I live in hope, that’s how I exist these days, and Isabel allows me to have that mindset.”