Jane Clouting – Colorectal Cancer

“I retired at the end of 2018 after many years of a demanding career in the City of London. With David, my partner, we looked forward to our next 20 or so years enjoying our recently built house and travelling with me continuing horse riding and all other things that are possible without the responsibilities of the day job. However, that wasn’t to be.

In early 2019 I had some large metal staples removed from my right knee, followed by a not-unexpected full knee replacement in the March. I was then into a full rehab programme. Hard work! Helped by the use of a “game ready” ice machine. Brilliant piece of kit if you’re interested! I knew a full recovery was doable but that could take 2 years realistically.

In March 2020 I underwent tests following developing bowel issues then the NHS and the country locked down, weirdly on my birthday. Eventually at the end of June, at Southampton General Hospital, I was diagnosed with bowel cancer, equivalent to stage 3 (the hospital doesn’t use the conventional classification). The surgical team embarked on a “shrink then operate” strategy. I had several rounds of strong chemotherapy followed by chemo/radiotherapy. Needless to say, my knee rehab took a back seat but when the radiotherapy ended, I had a 6-week respite prior to surgery so I got on the static bike and got myself “operation ready”, strength up and heart rate down, earning a big tick from the pre-assessment team. I knew it was important to go into surgery as fit as possible for a better recovery. February 2021 brought bowel surgery (a low anterior resection), taking a lot more than half my rectum, and waking up in ICU with a stoma, a steep learning curve. Suffice to say I managed but when I was listed for stoma reversal surgery in June, I couldn’t wait. I was lucky – there can be a long wait for the reversal operation. When the surgeon said my abdomen would be stapled back together I thought he was joking, but there under the dressing was a very neat row of metal staples, to be removed by the GP surgery nurse after I was discharged from hospital. The air was pretty blue on the 3 attempts it took to remove them but the Manuka honey dressing to soften the surrounding skin worked a treat.

I know there are some conditions where a stoma can be a welcome solution, but it wasn’t for me. Even so, the challenges, post reversal are real. My surgeon warned me that I had a “very small rectum” meaning “normal” bowel behaviour would be a thing of the past and might be difficult to manage – some people ask to have their stomas reinstated because of the difficulties. And they are real. Following some pretty unpleasant, unpredictable episodes, I was diagnosed with Low Anterior Resection Syndrome. Again luckily, Southampton General had just started a new unit providing assistance and guidance on LARS and late effects and I have benefitted from their expertise. But it’s all a bit trial and error and with the number of variables to be tracked, working out the best approach is very difficult. It can involve keeping a daily food and stool diary, using the well-known “Bristol Stool Chart” (who knew?). And experimenting with various types of medications, techniques, and therapies. And always in the back of your mind is the anxiety of an unexpected accident or the thought that the cancer itself may recur. With the help of Hannah, the nurse specialist, (a massive shout out to her) I am more stable but still veer between being constipated (extremely uncomfortably, sometimes making it difficult even to sit down) and spending hours on and off the loo, sometimes during the night when all roughly 5 feet of my large intestine and 10 feet of my small intestine wants to empty itself v e r y s l o w l y.

Anxiety can also manifest itself in other unexpected ways – I was brought up never to leave the table during a meal out of respect for one’s companions, always to eat everything on my plate out of respect for one’s hostess and not to interrupt a conversation, all of which are now impossible. Occasionally it’s necessary to rush off when someone is in the middle of a sentence. Not to mention the unexpected wind …

I gradually got back to exercising, picking up my gym membership and commencing a properly structured regime in September 2021, for the first time since before Covid. The gym is one of my happy places, where with a bit of focus I can feel “normal”, although there has been the odd, unexpected dash to the loo. But it’s great for the headspace and the endorphins generated by exercise really do help to keep things in perspective. It also helps alleviate some of the post-chemo side effects. My thanks go to Justin Pimm and his team and Dean Sutton and his physio colleagues, I am now probably fitter than pre-knee.

I’ll pretty much say yes to any invitation now, however outrageous, (Bermuda for a party anyone? Rugby World Cup? Paris Olympics?) and worry about the consequences after committing. David, my partner, (who used YouTube to teach himself how to do the daily injections in my abdomen when I couldn’t bring myself to do it) and without whom I wouldn’t have coped with this, says that getting this far is down to my stubbornness. It’s true I don’t like being told I can’t do something. There have been one or two tricky situations; sadly I missed the cake-cutting and first dance at my stepdaughter’s wedding due to an urgent need to change my underwear, a night at the theatre ended with the security guards trying to throw me out when everyone else had gone home because I couldn’t get off the loo … or stopping at services on the A3 with all the loos out of order and the female manager not allowing me to use the staff loo because it was “against the rules”. Thumbs up to the understanding staff at Brew Dog and All Bar One (sounds like I spend too much time in bars!) and to the BA team at LHR. And anywhere with only one cubicle or shared facilities can be horrific.

So why PLANETS? I was introduced to them by the wonderful nurse support team at Southampton General Hospital, of which Hannah referred to earlier, is a member, and a shout out to Angie too. I attended PLANETS’ first post-Covid colorectal support meeting in October 2022 and continue to attend. The range of speakers is always very interesting with a mix of clinical and practical specialists and the nurse support team attending, continuing their connections with patients. But also, it’s another happy place where it’s possible to talk about our conditions and experiences with people who share them.

The PLANETS team are truly inspirational – a massive shout out to Layla, Jo, Neil and all involved – they have raised a huge amount of money for the benefit of the people they support. Our part of the UK would be a poorer place without them.

So my key takeaways: get tested and/or screened whenever you are offered – it’s never as bad as you think it’s going to be. (A colonoscopy can be fascinating!) And never ignore unusual symptoms. And a plea if this happens to find its way in front of anyone who has anything to do with designing or setting policy on public toilets, wherever they happen to be – more of them, please, always more than one cubicle and with separate sex spaces. There are more of us with bowel issues than anyone realises trying to live as normal lives as possible – and I know I’m one of the lucky ones; there are many people far worse off than me who find leaving home too difficult.

And get active, even just a bit. There will be something that works for you. Personally, I use a long banging playlist in the gym with music ranging from the 1970’s to the present day and I attend a variety of classes mostly with music and some lovely people. I continue volunteering too, again it helps with normality, working in a local community shop and annually for a number of days at the London International Horse Show. I love the performing arts, particularly dance – I highly recommend anything immersive to help create the illusive head space.

Lastly, I’ve mentioned David, who puts up with my anxieties, manifested in short temper and occasional bad behaviour. He has supported me through this, not least in continuing to make sure I eat properly and in training and joining me on a challenging bike ride – so a big thank you.”