Bowel cancer and talking sh*t!

“So, you’re fine now, right?”

Ah, the question that often gets asked when you tell people your cancer woes! And the thing is, it’s usually asked with the best of intentions. Your friends and acquaintances want you to be fine – but ‘fine’ can mean very different things once your body has been through cancer treatment.

In our latest blog, we are literally talking sh*t!  Our writer, Pippa, shares her experiences of a bowel cancer diagnosis and treatment in her early 30s and explains what the ‘new normal’ can feel like once your insides have been through the wringer. Having trouble explaining to people what your life is like now? Please feel free to share with others and, as always, let us know what you think.


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Pippa, during treatment

We live in a country where people are embarrassed to talk about their bodily functions, particularly their bowel movements. We rarely talk about them with our friends and family (you know you have a close friend if you do!) and we especially don’t like to talk about them with strangers, even doctors. This inability to talk about bowel movements is undoubtedly putting lives at risk and it almost cost me my life.

Bowel cancer is the third most common cancer in both women and men in the UK, and the second most common cause of cancer death in the UK, after lung cancer. Like many cancers, bowel cancer is more common in older people and screening is offered for those who are 60 or older. However, there are quite a few of us who are considerably younger who have been diagnosed with bowel cancer. As screening is only available to those who are older (and even then, it isn’t 100% reliable) you need to be aware of the symptoms of bowel cancer and talk to someone, like your GP, if you are experiencing them.

Before I was diagnosed, I experienced both a change in bowel habits and blood in my stools. These symptoms coincided with starting a new job and I put them down to stress. I was also embarrassed and didn’t want to talk to my doctor about it. I finally went to my GP fifteen months later. What finally convinced me to go? Confiding in my mum and one of my sisters. They were adamant I went to the doctor and it was actually much easier than I thought it would be to speak to my GP about poo! She referred me immediately for a colonoscopy, which is how my bowel cancer was discovered.

When you’re diagnosed with bowel cancer your life will forever revolve around poo, a subject that no-one wants to discuss! During treatment your bowels take a battering and a lot of people have a stoma (temporary or permanent) which brings its own poo challenges. I never imagined my life would involve waking up in the middle of the night and feeling a warm liquid all over my abdomen -and that liquid turning out to be poo from a stoma bag leak. Equally memorable was the occasion, soon after my operation, when I didn’t have a firm enough grip on my stoma bag as I was trying to empty it. Instead of emptying a very liquid poo into the toilet, it went all over the seat, my clothes and the floor – in fact, it went everywhere other than the toilet bowl. Happy times!

Being diagnosed with bowel cancer means you very quickly have to get over any qualms you might have had about talking about poo. Not only do you get used to crowds of people looking at or up your backside, but every appointment with consultants involves discussing your bowel movements.

Even once treatment is over, people rarely return to “normal” bowel function. The consultants like to refer to the period post-treatment as “getting used to your new normal”. For a lot of people, the final part of their treatment is having a temporary stoma reversed, which is when the bowel is reconnected for the first time post-treatment. A section of bowel will have been removed and the bowel that remains will have been affected by other treatments like chemo and radiotherapy. As a result, the speed at which poo moves through your bowel, as well as your bowel’s reaction to food and environmental stresses, will have changed. It is not uncommon post-surgery to spend a considerable amount of time on the toilet. Not only do you poo a lot, but it can also take a considerable time to fully empty your bowels. Challenges include feeling like you need to do a poo but not being able to, going to the loo, cleaning yourself up and then immediately needing to go again (referred to as clustering). No one understands the pure joy of passing a single normal poo until you have had bowel cancer!

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A post-treatment Pippa

These challenges are all a pain when you’re at home but they present even greater challenges when you’re out of the house. Prior to being diagnosed with cancer I tried to never do a poo outside of my own bathroom at home. Post-cancer, that is impossible. In the early stages post-treatment I didn’t like to be far from a toilet because if I needed to go, I had a very short period of time in which I could hold onto my bowel. Please don’t judge if you see a person who looks “perfectly normal” rushing into a disabled toilet. There are a number of medical conditions that mean that people need urgent access to a toilet and until you have experienced incontinence you can’t fully understand how embarrassing and horrible that is. If all other toilets are busy, the disabled toilets can be your only option to avoid an accident. Disabled toilets also provide more space to move around. When you have a stoma, you need that additional room to be able to empty your bag or to replace the bag if you’re unlucky enough to have a bag leak while you are out and about.

It can be very isolating to deal with the after effects of bowel cancer and the treatments. Thanks to Shine I have met a number of fellow “Bowelies” with whom I can have frank chats about poo and all of the other shit that comes with bowel cancer!

I am really passionate about educating people about the symptoms of bowel cancer and getting them talking about their bowel habits more. People can literally die from embarrassment and that’s not right.

Pippa Woodward-Smith is 34 and lives in Southampton. You can meet others like Pippa at our upcoming Shine Connect conference on 23rd April in London.

 

 

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Fighting talk: Why I’m not ‘battling’ my cancer

Most of us who have been diagnosed with cancer will be familiar with the war terminology that frequently accompanies a diagnosis. Fight, battle, war – they’re all words that get thrown around when you’re going through treatment or living with cancer. But are these words helpful? What do they really mean? In our latest blog, Sarah Carlin explains how she feels about this terminology and why she’s not ‘fighting’ her cancer.  We’d love to know what you think about the words that are used to describe a cancer experience – tweet us on @shinecancersupport or email us on info@shinecancersupport.co.uk. Happy reading!


JoJo Gingerhead, was a member of Shine who blogged prolifically about her experience of living with a secondary triple negative breast cancer diagnosis. I never knew Jo personally, but I admired her from afar, not least for her aim of “trying to find light in a dark and scary situation without using the words fight, battle, journey or survivor”.

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Sarah and her Uncle Paul

The rhetoric around cancer was a bugbear of mine long before I received a diagnosis. I had a much-loved uncle who passed away from a brain tumour at the age of 28, and I’ve always been pretty sure it wasn’t because he didn’t fight hard enough. Yet it’s seemingly impossible to talk about cancer without using militaristic language.

Many organisations use this kind of language to get people on side. Reading slogans like “we’re coming to get you”, you’d be forgiven for thinking that cancer was some sort wildcard despot rather than a complex range of different diseases.

Cancer is not some sort of playground bully you just need to square up to, yet so many people seem to think it is. I’ve had someone tap their head and tell me not to worry because “it’s all up here”, as though all you need to do is stick on the Rocky theme tune and channel your own determination in order to stop those cells dividing. Something, I’ll wager, they’d never say to someone with COPD, or heart disease, or HIV.

There’s also the problem of confirmation bias. Many people who survive the disease talk about their determination not to die, so the idea that this somehow was a factor in their survival seeps into the public consciousness. But the will to live is a pretty much universal human characteristic. You obviously don’t hear from the people who were equally determined, but who died anyway because that’s how disease works.

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Blogger Sarah

Another issue is that nobody “wins” their battle against cancer, or certainly not in the way the media portrays it anyway.  Few people finish chemo, fist-bump the nurses and declare themselves triumphant. You crawl home and spend the next weeks, months, years sh*tting yourself that it’s going to come back. Often it does. If it doesn’t, then maybe, just maybe, after five years has elapsed you might tentatively feel like the danger has passed. There’s no VE day, no calling the troops home, no bunting. This is a disease in which you can never be wholly sure that the gruelling treatment you’ve just endured was enough. Sure, you may have vanquished the enemy on the frontline, but who knows if there are little metastatic guerrillas regrouping and waiting to re-launch when the time is right? My own initial brush with cancer was as close to a clear cut victory as anyone could get. Successful resection, no lymph node or vascular involvement, stage 1 – peace for our time. The bombs fell a year later, however, when it returned in not one but seven places.

Sometimes, the idea that I can fight my cancer through sheer force of will is seductive – I can completely understand why so many people choose that as a way of coping. The thought that you could die so young of this disease just seems like such an insult, so outrageous that the adrenaline runs through your veins and yes, you want to fight. As in most instances in which your life is in danger, the fight or flight instinct has kicked in.

But I know that I can’t fight my cancer. If I live, it won’t be because of anything I’ve done or felt. It will be because of a brilliant consultant, effective treatment and dumb good luck.

So whenever someone tells me I can fight it, it makes me wince – not just for me, but also on behalf of my uncle and on behalf of the many others who are no longer with us, like JoJo.

Sarah Carlin is 31 and works as freelance in PR and as a copywriter. You can read her other blog for Shine (about the perils of reading about cancer on the Internet) here