In February I have set myself the challenge of rowing 378 km on my rowing machine at home to raise money for the St Marks Foundation, which I will aim to accomplish by rowing 13.5 km every day for 28 days. With the restrictions imposed on us by a national lockdown I definitely have the time to commit to this and it is uplifting knowing I'm doing this in support of such a worthwhile cause. 

So why 378 km? To get to that let us go back to 2015. After Mum and Dad were both diagnosed with bowel cancer, my brother Dave pushed for us both to be screened. Dave’s was on the 5^th November and he came out clean as a whistle. It was a different story when they got round to doing mine a week later. Due to the sedation, I can only vaguely remember being told that they had seen what must have been hundreds of polyps throughout my bowels. As a result, a referral was sent to St Marks hospital in Harrow.  

I was diagnosed with Familial Adenomatous Polyposis (FAP) following another colonoscopy, this time performed by the specialist team at St Marks. After this I was told that the only effective way to treat FAP was to have a restorative proctocolectomy performed pretty much as soon as an appointment was available at St Marks. I requested to delay the procedure until the summer was over given that it was estimated that a full recovery from the surgeries would take a year. We made the most of the time, making it out to Florida for our sister’s wedding (followed by a bit of r&r in Bermuda), a sailing holiday in Croatia and a surprise farewell bowel bash. 

The big day finally arrives, 15^th December 2016. Consent forms are signed, at every stage they check I know what’s about to happen. By the time I got to the anaesthetists my nerves had really crept up. Fortunately for me, the pair of them did a really fantastic job of helping me feel relaxed so that when the time came for me to go under, we’d swapped a few jokes and had a bit of a laugh. The next thing I knew I'm coming to in the recovery unit and my shoulder is in agony. Yes, that’s right, over the next 2 weeks or so the most pain I felt was in my shoulder.  

As I recovered on the ward, progress was measured by small milestones, usually in the form of a drain being removed or successfully changing my ileostomy bag on my own for the first time. It was during this time that a member of the team came to me with a particular piece of news. The bowel they had removed during the surgery had been dissected and they had counted 378 polyps in total. Hence the 378 km target for February, 1 km for every polyp.  

The biggest challenge between the 2 surgeries was learning how to cope with the ileostomy bag. I was told that initially I would have to stick to a bland diet of meat and carbs whilst slowly reintroducing other elements of my old diet. Incidentally I'd have to repeat this process once the stoma was reversed. Because of this I decided to treat the ileostomy bag as a metaphorical set of training wheels. Especially in the last month of having it I really tested the new status quo. What I was seeking was the knowledge that if the worst came to pass and it turned out I would have to keep the bag for life (new meaning there) then it wouldn’t impact my day to day living in a meaningful way. Mostly this consisted of seeing how different foods could affect the output of my bag and adjusting how much loperamide I would use to accommodate that change. About a week before the reversal, I capped it all off by going for a swim without any mishaps. Having that peace of mind that I could live a normal life with the bag really helped reduce the pressure of expectation from the reversal of the ileostomy. 

Prior to the diagnosis I knew I was fairly fit and probably the best I'd been mentally since I was 18. I used to run and swim regularly and even at work was usually on my feet for most of the day. It wasn’t until after the surgery and my fitness had gone that I realised quite how I’d taken it for granted. Regaining it took so much more than I expected. I was sceptical of the 1 year recovery time at first but in the end, I had to give in and listen to what my body was trying to tell me. Sure enough, roughly around March 2017 I completed my first park run post-surgery. 

Mentally things took a lot longer to improve, mostly because I didn’t acknowledge they weren’t right until August 2017, a full 9 months after the first operation. Things came to a head when I realised that my own brother was walking on egg shells around me when we were playing a game of snooker. Following that I went to my GP and asked for a referral for some counselling. We made good progress and by the end of my allocated 6 sessions we both felt that I was equipped to keep my head above water. 

Staying active and getting regular exercise has been essential for my well-being during the lockdowns. There are the immediate benefits of feeling better after a workout and being able to eat and drink more before I start putting weight on. The routine that having a regular exercise regime brings is pronounced too. Firstly, it’s good for my head just to get out of the house and hold off the cabin fever. Secondly, I've found regular exercise has led to much more regular eating habits, which in turn means my bowels are more regular, which in turn has meant the quality of my sleep has improved. 

It shouldn’t surprise anyone that knows me that this challenge was a fairly spontaneous thought that only occurred to me last week. Once I thought about it though I knew I had to do it. The median lifespan of someone with untreated FAP is only 42. Thanks to having the surgery my own life expectancy has been greatly extended. The continuing innovation taking place has meant that an operation of this magnitude and impact was able to be done laparoscopically leaving minimal scarring. Under the ongoing care of the polyposis unit at St Marks I receive a yearly endoscopy and pouchoscopy to monitor the few remaining polyps that are there. The defective gene that has caused my FAP has been identified meaning that my family has been tested and it’s a huge relief to say they are all clear. Being treated at St Marks meant I was able to meet others who were facing similar challenges. It was a powerful moment when I realised that although it’s a rare condition I have, there are plenty of people not letting it stand in the way of their lives. 

This challenge represents an opportunity for me to reflect on the journey to get to the point we’re at now. It would have been impossible without treatment from the teams at St Marks and East Surrey Hospital and the ongoing help and support from friends and family. It’s a celebration of how far I’ve come, a demonstration of the gratitude I feel and hopefully a positive message to anyone in the same situation.

From the bottom of my heart, thank you all.