A really open discussion of my pre-diagnosis bowel cancer symptoms for Bowel Cancer Awareness Month
I realise that the world around us has changed beyond recognition; I realise that people are being forced to work out a new way of paying their bills, a new way to educate their children, a new way to support each other, a new way to live: a new normal. And I’m hoping that maybe, in some ways, in the long run, society will change for the better; when this is all over we may have a renewed understanding of the struggles we all face on a daily basis – that the people who denigrated those on benefits, will now realise how quickly lives can change, and how quickly, out of nowhere, we all need a safety net to fall back on. And I hope that we will learn not to put excess pressure on our NHS and find alternative ways to offer medical advice and support; that some of the measures in place to support social distancing may prove to be so efficient and effective we will be able to keep them, when all this is over. However, I do have a real fear, that after this madness is done with, we will see an increase in advanced cancer diagnoses – purely because people didn’t feel they could talk to their GP about that niggling pain, or that change in bowel habit. Cancer does not know there is a pandemic going on, and Cancer does not discriminate. So, because of that fear, and because April is Bowel Cancer Awareness Month, I thought it was about time that I talked to you a bit (a lot) about poo: more specifically, the detail behind my symptoms and the mistakes I made that meant that by the time of my diagnosis, my cancer was locally advanced, stage 3, grade 3: caught just in time - a sniff away from being stage 4 and possibly incurable. I first started having issues with my bowel when I was about 17 – I began suffering with bloating and constipation mostly. My mum packed me off to see a gastroenterologist and I had several tests: a barium enema, screenings for crohn’s and coeliac disease. Nothing conclusive was found so I was handed a very vague diagnosis of ‘Irritable Bowel Syndrome’ and these symptoms just became part of my life. I don’t believe I had cancer way back then – a barium enema would have shown this up anyhow. However, I do feel, that my IBS ‘diagnosis’ meant that when my cancer did develop, I ignored my symptoms, passing them off as just another IBS hardship. It is worth bearing in mind that, unlike ‘Inflammatory Bowel Disease’, as far as I am aware, there is no direct link between IBS and bowel cancer. But, I feel strongly that there is a real danger that those who suffer with IBS will do what I did, and dismiss or ignore any changes. I strongly believe, that if I hadn’t taken up running, I would have continued to ignore my symptoms until it was much too late. Although I had never showed much aptitude for it, I had always enjoyed sport – I played football (soccer) through uni back home in Australia and did some running to help out my match fitness. Looking back now, I laugh at how impressive I thought it was that most mornings during the soccer season I would run form my house in Hamilton to Merewether Beach in Newcastle Australia (about 2 miles), have an attack of ‘runners trots’ (luckily the beach toilets were deserted at 6am) and run home again. Runner’s trots is a well-known phenomenon that most runners have experienced at some time. And it is exactly what it sounds like – pretty explosive diarrhoea induced by running. The cause is unclear, but it can be linked to gravity – the physical motion of your bowel bouncing about whilst running…I think of it like shaking a bottle of anything fizzy – dehydration and also the fact that when you run, the blood is diverted away from your bowel to your arms and legs and therefore (your bowel) doesn’t work as it should.
So when I started running more seriously many years later (2015 I think it was), I didn’t think too much of the odd bout of runner’s trots…to begin within. I think there were lots of reasons behind why I started running. I’d been car sharing with a lovely, fitness and triathlon-mad guy called Phil, and we talked a lot about his exploits. I was also going through a period where I was feeling quite anxious; I’d been the victim of some bullying and I also believe that subconsciously I knew that the long term relationship I was in at the time was maybe not heading in a very healthy direction – and although running helped with my anxiety, it was also another way of escaping and not facing up to this. So, after a year of Phil’s enthusiasm, I brushed off my ten-year-old trainers one day and I just started running. To begin with I ran on farmland – I felt way too self-conscious to run in public. I didn’t have any apps or training plans. I just tried to get a bit further each time I went out. And to my surprise, I found that it wasn’t too bad. I got to a mile, and then two and then three… and found I was hooked. And then one of my best friends Lucy’s step dad was diagnosed with stage 4 bowel cancer. It was not just incurable, but terminal. She decided to enter the Turkey Trot (a ten mile beast of a race through undulating terrain, hosted in wintery December) and raise money for Cancer Research in his name. So I said I’d join her and amped up my training, again with no advice or guidance beyond Phil’s top tips. I counted back from race day, and built up to that by a mile a week. I had no idea what tapering was. Now, most people kick off their competitive running career with a Park Run, and then build to a 10k. But not me! I’ve never done anything by halves, as my Mum is keen to remind me. Still, starting out with a beast of 10 miler was pretty tough. Or stupid… The day of the race was crisp and cold – but clear and blue skied. My goal was to run 8 minute 30 miles, and somehow, despite the two mile climb to the finish line, I achieved my aim in a total time of 1 hour and 25 minutes and earned myself a Christmas pudding for my troubles. We raised £1777.50 – mostly down to Lucy I should admit!
Receiving our Christmas pudding trophies with Sophie and Lucy
By the time I was running 4 miles in 32 minutes, and with Phil’s encouragement, I went along to my first training session with a local running club. And it became pretty clear that I actually wasn’t too bad. I quickly graduated to the more advanced group and my times plummeted. My PB over a mile dropped to 7 minutes and then to 6 minutes 30. And I started entering more races. By the following December though, I hit a wall. I was forced to drop out of my second Turkey Trot due to a chest infection. And I struggled to shift it – I seemed to come down with bug after bug that eventually turned into a flu that lasted 6 weeks. I was living on my own by that stage, in a one bedroom flat with just Roo, my greyhound. It was a pretty lonely time. Finally my GP agreed that something wasn’t right and sent me for a blood test which revealed that I was anaemic. There didn’t seem to be any clear reason – my diet was good and I’d been on the implant since my Pulmonary Embolisms in 2011 which meant I hadn’t had a period in as long. But he sent me away with some super powered iron tablets and instructions to book a follow up blood test in 3 months.
A slow return to training and avoiding the ice by running on the beach with club mate Stephanie)
Slowly I got back into training, but was struggling to get back to my previous times. I was constantly plagued by the feeling of being ‘under the weather’ – but stupidly, didn’t go back for a follow up blood test. Instead, I started self-medicating with iron any time I felt ‘below par’.
And when ‘the trots’ got worse, I just blamed the iron tablets – they are notorious for upsetting your stomach and digestion. I remember completing the first race of the next Great Yarmouth 5 Mile Series, crossing the finish line and having to keep on running – straight to the toilet. Eventually, I returned to my GP in an attempt to find a solution that might help me get through races without pooing myself. He suggested I try a drug called mebeverine that is designed to slow down your gut and relieve IBS symptoms. He asked me about my family history, but due to my negative screening for Lynch Syndrome, it was quickly dismissed (See Part 1 of my blog for more on Lynch Syndrome and my family history of bowel cancer). No link was made between by digestive issues and my anaemia. It’s safe to say that mebeverine not only didn’t work, but made me even more uncomfortable in my daily life, so I started using imodium to get through races instead. I continued training as hard as I could and managed to complete the East Coast 10k on a 7 minute 30 mile average, achieving a Silver Club Standard time. But it was really hard. And I’d been faster in the past.
Then the trots started taking over training as well – I was struggling to keep up with my club mates, often having to leave the group in search of toilets (often in the dark), or crying off early from sessions altogether. I remember one club session, having to beg one of the junior member’s mums to drive me to the nearby Tesco. When I burst into the toilet it was full of teenagers standing about and I was too embarrassed to go so I had to hold it in till they left. My symptoms became so unmanageable that I had to stop training with my club altogether. It was too embarrassing. And I had to start building toilet stops strategically into my routes. One particularly bad solo speed session, leading up to the Cambridge Half, involved having to run around the block, stopping at my house between each rep for a pretty explosive poo. Once, further from home on a long run, I had to stop in a field. I was probably a good 8 miles out, and 7 miles from the McDonalds that I sometimes had to divert to. From that point, I started using imodium to train as well; which meant that when I wasn’t pooping like a duck, I was blocked up and even more uncomfortable. At some point during all this, I also started suffering from bloating and stomach cramps as soon as I ate anything, and an investigation into a link between my symptoms and food began. In desperation, I paid for a private dietitian and explored the FODMAP diet. FODMAPs are sugars that the gut cannot absorb, found to cause IBS symptoms. And it feels like they are in everything. The FODMAP diet aims to cut out all foods high in FODMAPS completely so you can reintroduce them one at a time, hopefully identifying which ones in particular are causing you trouble. Then you know what foods to avoid. This is an incredibly restrictive diet. It involves cutting out so many staple foods - lactose, wheat, certain sugars, lots of different fruit and veg (including onion and garlic), beans and pulses...and more. I lost a lot of weight, and as a runner, I didn't have much to lose. And it made no difference whatsoever. In fact, my symptoms were continuing to get worse. And now it wasn’t just my running being effected, but my daily life. I was often uncomfortable at work, leaving lessons to visit the loo. I was going for a poo 12 times a day – mostly because I just couldn’t get everything out in one go. I had to completely change my wardrobe, to include loose fitting clothes that were more comfortable and flattering when bloated. Going out for meals would leave me in pain. One particularly bad occasion fell when Steve and I were playing music at a good friend's wedding. My stomach cramps were so bad I nearly passed out, violin in hand. I spent the rest of the night in the bridal suite, assuming a foetal position. I didn’t hide any of this, but I’m not sure if my friends and family really knew how uncomfortable I really was – I mean, although I have always been pretty open about these things, you don’t really want to talk about your poo all the time. And neither did I ever feel it was appropriate to take time off – I mean where would it end? I was still so adamant that it was just IBS that I constantly told myself I just had to put up with it. Much to Steve's dismay (food and cooking was – and still is - a big part of our relationship), I gave the FODMAP diet six months before my dietitian admitted defeat. She suggested probiotics but they were very expensive, and with the FODMAP failure I wasn’t so keen to throw any more money down the drain. So I battled on, trying to manage things my own way. I kept training, kept racing – bouncing between imodium induced constipation and diarrhoea, kept reacting to ‘feeling under the weather’ with iron tablets. But my times were still yo-yoing, as every time a new round of illness hit I had to start again.
Having recently recovered from yet another virus, I was surprised to finish sixth in a beautiful yet challenging Endurance Life East Coast Trail Half Marathon, despite getting lost and adding another half mile to my total distance! This race takes you off road from Dunwich to Walberswick and back again.
I trained so hard for the 2019 Cambridge half though: in all weathers and all through winter. I even missed parties to make sure I was on form for my long runs; despite everything, I was determined to run a PB – my coach had designed me a training programme and I had stuck to it like glue. I didn’t want to let him down. I had been training to run it in an hour and 45 mins, taking into consideration that my average times had dropped by about 20 seconds a mile at this stage. So my aim was to maintain 8 minute miles. On the day, my coach messaged to wish me luck: 'I want you to run sub 8 minute miles'. 'I can't ' I wrote back. 'Of course you can' and a 'you got this' emoji was his reply. So I dosed myself up with even more imodium than normal and gave it my best shot. And I felt good. Really good. The atmosphere was amazing: the crowds were huge and the city beautiful. Every mile or so we would run past bands or singers, even a percussion ensemble. And after a rainy start the sun came out too. I managed the first couple of miles dead on 7:50 minutes, and then the next and the next. And eventually I found myself mumbling: 'I think you're going to do this'. At mile 12 we turned a corner and met a headwind. 'Dig deep Suze' I pleaded with myself. 'You're almost there'. I put my head down and powered on, finally hitting the last half mile marker. 'This is it. ' I picked up the pace for a sprint finish; I crossed the line exhausted, fighting back the need to vomit. My official time came in at 1 hour 43. I was completely elated. On top of the world; constipated for a week, thanks to the Imodium, but not even that could kill my high.
A proud moment for Doug and Kate too! Hannah and Steve – our trusty cheer squad.
From that moment on though, I crashed. My times skyrocketed. I was constantly fighting a cold. My cramps and bloating were plaguing me every day and all day. But it wasn't until I was struggling to maintain 9 minute 30 miles without stopping for breathers that I finally dragged myself back to the GP. Running literally saved my life; who knows how long I would have put up if I hadn’t been so frustrated by my rubbish times? I was so anaemic that I was called in to the next available appointment. Instead of my usual doctor I was assigned a GP new to the area. He was young, and very worried - normal haemoglobin range is 11.6 to 15 for women. Mine came in at 8.5. He couldn’t believe I was walking let alone running. And I was given 2 faecal tests to take away. And strangely, despite everything I’d been going through, I still wasn’t that worried. I’d had a negative screening for Lynch Syndrome after all, and just completed a half marathon PB. Surely the chances of developing bowel cancer was very low - at my age especially. I was young, and fit, and fairly healthy…well, so I had thought. In retrospect I realise that my existence was not ‘healthy’ in any way. But when I got a call from my GP practice’s senior partner to inform me that there was blood in my poo, the realisation began to sink in. I was fast tracked to gastroenterology and then a colonoscopy. Prep day for my colonoscopy was incredibly unpleasant; I didn’t sleep either so arrived for the procedure exhausted and drained. I was outwardly optimistic but inwardly, somehow, I think I knew what they would find. Before I went under, the consultant asked me if I knew why I was there. ‘To find out why I’m anaemic’ I answered confidently. ‘Probably just heavy periods’ she mused. ‘No. I haven’t had a period in 9 years’. Her face changed then; just for a second. Although I was heavily sedated I have vague memories of things that went on. I remember excruciating pain and being force fed gas and air. I wonder now if that pain was related to the camera squeezing past my tumour; or the biopsies taken. I remember talking drunkenly at the staff – a nurse held my hand, and I realise now she was blocking my view of the screen. ‘Is that my insides?’ I slurred, pointing. The nurse nodded, moved her head further in front of it and squeezed my hand tighter. ‘Tell me more about your Dad,’ she soothed. So I did; I talked about my Dad and our family history of bowel cancer. I told them about my negative screening. I told them my Dad’s fear that my screening had been wrong. And although I don’t remember this, I must have told them that I thought that I probably did have cancer. When I came round from the sedation they called me and Steve into a tiny room with the consultant and a nurse. The following week, when I was back in for a gastroscopy to rule out anything in my upper tract, I realised that the consultant didn’t attend all people’s results. Only the bad ones I guess. Like mine. ‘I’m afraid it’s not good news’ the consultant said. ‘You have cancer…but I think you knew that.’ Thinking about that moment still makes me cry. I remember feeling like I’d been hit; I couldn’t breathe. I cried and swore; repeating the phrase over and over, whilst gripping Steve’s hand.
Everything moved slowly, as though I was underwater. ‘I knew. I knew.’ I sobbed. A 5.5cm tumour was found in my large intestine. That was September 28th, 2019. It took another 3 months to get my final diagnosis, staging and grading. Stage 3, locally advanced, grade 3 cancer. As well as my tumour itself, cancer cells were found in the membrane between my bowel and stomach and in 14 of the 26 lymph nodes they removed during surgery. I am now 3 cycles in to my 6 months of invasive chemo. I do not have a clue how my cancer is responding. So please, even though your treatment may be delayed in the current climate, don’t be as naïve as me. Thinking about how long I ignored what my body was telling me, and how long it took for my treatment to begin makes me even more adamant that you need to get the ball rolling. Now. Or you might not be as lucky as me. I have a good chance. Your cancer might be stage 4 – incurable, or worse, untreatable and terminal. Or, hopefully, you might be luckier than me, and avoid chemotherapy altogether, or even better: avoid surgery as well! April is Bowel Cancer Awareness month and I implore you – talk about your poo. It might just save your life.
*Lucy’s step dad, John Rogers, died on January 6th 2020. He had lived valiantly and stoically with stage 4 bowel cancer for 4 years. Since diagnosis, he saw his youngest daughter, Ellen, graduate College with straight A*s and begin a career in midwifery; he was able to get to know his first grandson, Theo; he was able to be there when his middle daughter, Anna, married her best friend. But inevitably, he left a beautiful family feeling pretty lost, yet determined to keep his memory alive. He won’t get to meet his second grandchild though, due later this year.
Three generations of one of the most amazing families I know: John, Theo and Lucy
And it has been hard being ill and not able to support them the way I wish I could. Especially as Lucy has managed to continue being my biggest rock, even though her own world has been turned upside down by bowel cancer too. Cancer is both cruel and indiscriminate it would seem.
In December 2019, Lucy made a last minute decision to run the Turkey Trot again (having recently had emergency surgery herself, following a coil implantation disaster) – this time raising £735.31 for Bowel Cancer UK in both mine and John’s name. Thankyou Luce. I love you.