Profile

Paul C

Regular user
Male 49 y.o.
ABOUT ME

I’m 48 years old, husband to Julia and Dad to Joel (17), Mia (15) and Dan (9). We live in Edinburgh and I worked in education, most recently as a Depute Headteacher in a large comprehensive secondary school. I’m into hiking, travelling, football, cycling (well, pre-diagnosis), walking our dog, socialising with friends and cooking.

I took part in the Walk Together events in 2019 and 2020, raising over £9000 for Bowel Cancer UK and £4000 for the Maggie’s Centre, Edinburgh. Unfortunately I wasn’t well enough to take part in June 2021 but the plan is to build back enough strength to raise some more funds later in the year.

I was diagnosed in May 2019 with Stage 4 Bowel cancer following a colonoscopy in April 2019. Since then I have undergone approximately 35 rounds of chemotherapy, beginning with Irinotecan/ 5FU/ Folinic Acid via a Hickman line, then onto Cetuximab, Oxaliplatin & Capecitabine and then onto Lonsurf.

As well as the secondary tumours in my liver, I also have a spread of them in my lungs.

I have now finished chemotherapy as it is no longer working for me and the liver tumours continue to grow (May 2021).

I have known since July 2020 that there is no possibility of surgery due to the spread of tumours in my liver and the complexity of their locations. I have had 2 second opinions who have all confirmed the original decision that surgery would not help me and create additional unacceptable risk. There will be no surgery for the primary tumour or the lung tumours either.

I took full medical retirement in December 2020, having been signed off on sick leave since June 2019. I am in palliative care. However, other than fatigue and being susceptible to occasional bouts of illness due to low immunity, I’m still fairly active, walking daily in the woods, hills or nearby beaches. I’m still a positive person, finding the joy in life and valuing seeing friends and family frequently; I’m focusing on living in the present and near future, making memories with my family and hoping to go on holiday with them at some point if and when COVID travel restrictions allow. Support for my family’s emotional wellbeing and planning for their futures is the most important thing for me.

I have just engaged with a nearby Marie Curie Hospice as my primary care is mostly being led by my GP and local nursing teams now that I’m no longer on chemotherapy. For now I don’t require any nursing support from Marie Curie but can access their support services and am now known to them for later down the line. It’s reassuring to know that.

I have been accepted onto a Phase 1 trial being run out of Edinburgh’s Western General Hospital, subject to me passing the threshold criteria for the baseline tests. If they all go ok I’ll begin the trial on 20th July 2021, taking a new hydrate pill daily at home for 21 days (one cycle) for a maximum of 12 cycles. There will be a lot of hospital visits and some planned overnight stays during the first couple of weeks, then hopefully very few. If the side effects are too much and damage my quality of life too greatly, I’ll withdraw or be instructed to withdraw from the trial. The trial may do nothing for me - or perhaps it will; I’m game to give it a go with optimism, as long as it doesn’t dramatically reduce quality time with my family. I figure that at the very least it will contribute to research, drug development and hopefully better outcomes for other people in the future. Any help that it provides me will be very welcome too, of course!

Continuing to adopt a policy of resilience, kindness and maximum defiance.