The Be Loud Be Clear campaign which Beating Bowel Cancer is running this week got me thinking as well as a few emails and DMs from people. My symptoms. What were they? What made me realise something was wrong?
So here it is, a very honest account of something I shouldn’t have ignored for as long as I did.
It was probably the end of 2009 and I was living with a friend. We were like sisters, we weren’t typical flat mates so we were able to really relax in front of one another. We would often discuss health and diet. So, one morning I was surprised when I woke up, and went for a wee. It was like any other morning, but this particular morning was different. I had wind. It was violent. It came out of nowhere. I had no stomach ache. It was loud and it worried me. I remember saying to myself “Well, this better not be serious”.
The wind carried on. But only when I went to the toilet. I was OK during the day, out and about. No one knew I had this problem, but it did cause some worry. For example, using a public toilet. I used to get embarrassed if someone could hear me peeing, so the thought of experiencing this wind in a public toilet terrified me. Then there was my flat mate – I didn’t want her to hear it. She’d laugh. There was also any romantic encounters – it put me off wanting to sleep over or even have them back to mine. There’s an episode of Sex and the City where the four women discuss how they won’t let new men believe or know they use the toilet. Joking that they’d only use the toilet in the next building or holding everything in until they were home. That was suddenly me.
Then there was the mucus, jelly-like mucus which I was passing. This was new to me and never seen before. I spoke to my Mum about it, and she looked baffled. I’m not sure if I ever looked it up. I probably did, but I’m guessing I didn’t read anything to make me worry. Again, something you don’t really share with friends.
I’d started to notice I was bloated. My job at the time involved lots of walking. Up and down flights of stairs all day every day. Working nights as well as days. I thought it was my diet. Not eating sensibly or at the right time. Living on tea and cigarettes probably didn’t help. I was surprised though that with all the physical activity I was doing the bloating wasn’t going. I felt like I was constantly expanding.
During the summer of 2010 I noticed my sex drive disappear. It just went. So did my desire to have a cigarette. I work in construction, there’s always someone who will, at some point in the day ask “fancy a fag?” I started saying no, which shocked everyone. They thought I was having a joke with them. But actually, cigarettes started making me feel really sick. I couldn’t stand the smell or the taste. I couldn’t stand next to anyone who had just had a cigarette. I went from smoking between 10 and 20 a day to completely switching off. I didn’t crave one. Going to the pub and having a drink wasn’t even an ordeal, even when everyone went outside for a cigarette. I just stayed indoors dreading their return, them stinking.
I’d also started to notice that during really hectic times at work, usually walking the building, snagging an area, I’d feel my body tell me I needed the toilet, so I’d have to run to the nearest toilet. This started to happen in front of colleagues, which is fine – everyone needs to go when they gotta go, but what made them ask me if I was OK, was that I’d disappear, return, pick up the conversation, and then suddenly announce, gotta go again. After a while they got used to it, and my embarrassment sort of disappeared. I was tired and fed up with it. What I didn’t tell anyone though was that when I was going to the toilet I was unable to pass anything. My body was trying to go, but I couldn’t. I was beginning to think I was cracking up. No pun intended…
I was starting to wonder if there might be something wrong with my stomach. Maybe IBS or something, or even maybe I was stressed out and this was my body having a go at me. I mentioned it to a few friends and they said I should get checked out.
My mum had noticed the wind. I’d moved back home to Woking December 2009. Throughout 2010 my mum would often ask if I was ok. She’d heard the embarrassing wind, and she was worried about it. Told me I should see a Dr, especially when I mentioned the bloated feeling and not being able to go properly. I said I’d go, when work and uni had quietened down. She told me off for not just taking a morning off, I argued with her constantly about it.
October 2010 I went to the Doctor, finally. I took a morning off and I decided to get it all sorted. I saw a Locum – I’d never met her before. She wasn’t interested. She thought I was too young for it to be anything serious. We went through my symptoms.
- Mucus instead of stools
- Bad wind
- Sex drive/cigarette switch off
- Unable to go to the toilet
- Also, bad breath (it felt constant)
- Stomach not feelng right
She asked about my life style. I explained I worked full time and it was a pretty stressful time, at work and at home. I told her I was studying part time for my degree. She then almost said “HA! It’s alcohol then, you’re a student”. I tried to explain I wasn’t a typical student, out at the student union every night. I was at uni one day a week with a day of lectures which started at 9am and finished at 9pm some nights.
We also discussed any holidays I’d been on. I’d been to Thailand in May of 2010. Funnily enough it was the best my stomach had been for ages while I was there. Had one night of a dodgy stomach, but actually looking back, I was hardly experiencing anything normal when it came to my bowels.
She reluctantly took bloods and then asked for a stool sample.
Weeks later I eventually got told the bloods were OK, and so was the stool sample. The receptionist told me this.
Fast forward to November 2010. I’d moved to a different office, and was located in the City, nearest tube, Bank. I was now office based which meant a bit more sitting down. Finally. I was tired and no longer up to all the walking I had been doing. I was tired too. Really tired. I was getting home and just wanting to go straight to sleep. It was winter so quiet nights at home were easier to get away with.
Whilst all this had been going on I’d also joined Slimming World. I’d decided to try their plan, because they have a green day plan which means a meat free diet. I wanted to eat plenty of veg and also keep a proper track on what was going on. I thought it might help with the bloating. Everyone at work supported my new eating plan and they too began eating healthily. I’m not sure who was more disappointed though when I announced I hadn’t lost any weight, the following morning after weigh in. “But you hardly eat anything!” “You live on vegetables?! and you run around here all day!?” By this point I hated my stomach. Even the lady at Slimming World was confused, and occasionally suggested I make sure I record EVERYTHING. She thought I was fibbing. I really wasn’t though.
Train journeys to work became a nightmare. I’d get on at Woking and usually have to stand. I’ll happily stand on the tube or train if I’m not in pain. I started to notice I wanted to sit down. I was tired (it was 7am) but also I was in pain. I couldn’t put my finger on it. Weeks went by, and it gradually got worse. I’d sigh with relief if I managed to grab a seat. By the time we’d arrive at Waterloo I’d be tearful with the pain. I also began to get earlier trains, and I’d get on at the back of the train because I knew there were seats. I was getting to work stupidly early. I started to notice at work I’d sit on my bum but I’d sit leaning on my left side, with my right leg crossed over my right, it was as if my brain was kicking in automatically to make way for this pain. People at work noticed this too. I’d also noticed if lying down I couldn’t get comfy unless my right leg was bent, with my knee up against my chest.
Christmas arrived. It was a quiet one. I spent most of it rushing to the toilet thinking I was going to go, but nothing was happening. I was keeping a diary of every time I felt like I needed to open my bowels. My recordings were showing I was going over 20 times a day. I was worse at night. I was now terrified. Over Christmas I didn’t want to do anything, but reluctantly dragged myself to north London to visit my old flat mate and exchange presents. What is a simple journey tired me out and put me in a horrible mood. I didn’t want anything to eat. I just wanted to be home and in bed with my leg bent against my chest. I returned home, and when asked how it was I burst into tears and admitted I felt like I should go to A&E. The pain was really bad. The only way to describe the way is like someone’s fitted a weight into the top right side of my bum cheek, around the lower back. It felt like my bowels were going to fall out, constantly. I was in agony. The pain was a constant throbbing sensation. It made me cry a lot. It hurt even when I was asleep, and most mornings I’d be up at 3am with the pain. Pain killers weren’t doing a thing. I never went to A&E though. It was Christmas, I was worried I’d be bothering them at their busiest time of year. I phoned my GP instead and booked an appointment. I was booked in for 30 January 2011. Over a month to wait. Great. All I kept thinking was with this pain, I’m not going to be able to finish my uni essay or revise for my exams which were only about 10 days away. I couldn’t focus on anything.
So 29 December 2010, I phoned my GP back and I said I needed an emergency appointment. They had a slot at 3pm. I was in! Yes! This time I saw my GP I had had since birth. He’d not seen me for years as I’d had quite a good health record up until that point. We had a chat. I got upset and cried a lot. I went through my symptoms.
- Mucus instead of stools
- Bad wind
- Sex drive/cigarette switch off
- Unable to go to the toilet
- Also, bad breath (it felt constant)
- Stomach not feeling right
- Bleeding when going to the toilet – not just on the paper, but there was blood in the stools and the toilet water was red.
- Bowel habit has changed completely and it’s been like it now for months
- Stomach ache
- Weightloss, but only in the summer – it was very sudden and unexpected but I put it down to the running around at work
- I’d bite my tongue whenever I ate – big sore chunks sometimes
- A constant pain in the upper right side of my bum cheek
- Feels like my bowels were going to fall out
- Sometimes no control over my bowels
- Constant straining when going to the toilet
- Bowels wanting to open over 20 times a day
- Whatever I eat, there’s no improvement
He went through my last blood test and said it was OK. No signs of anaemia. He then pulled a face and asked why I hadn’t done a second stool sample. I explained I was told it was OK. He said it showed on his records that the last one was unsatisfactory and I should have been asked to do another. FAIL.
It took some convincing though, even with my all my symptoms. He asked if it was a bad back. I got angrier and angrier. I couldn’t stop crying. What made him sit up and take notice was that I admitted it was stopping me from living my life. I didn’t want to do anything. I was scared of not being near a bathroom or my bed. I told him I know my body and I know this isn’t normal. Something was really wrong.
He then said he’d have a look. He’d do a rectal examination, but I’d have to wait. There needed to be a nurse present. There wasn’t one available though due to the time of year. I said I wanted one and I wasn’t leaving. I said I’d sign something to agree to it. I just wanted the examination, because I wasn’t leaving again with no help.
He did the exam. It hurt, quite a lot actually. He touched what hurt, and I told him that was it, whatever he was touching was the pain I could always feel. He wasn’t as chatty anymore, or quick to get rid of me. He told me to pull up my trousers and take a seat. I saw the blood on his gloves. Finally.
He then told me he had felt a mass in my rectum and it was bleeding. He needed me to see a bowel surgeon urgently. He made a phone call to the surgeon in front of me, and it was agreed I’d be seen the next day.
He told me I was young and it wasn’t likely to be anything sinister. But, it needed to be checked. I was just relieved to have finally been listened to. It wasn’t until I was leaving his office to meet my Mum in the waiting room the reality of it all hit me. I’d have to tell her what he’d found and it was only then I realised 2011 was going to be really sh*t.
So those are my symptoms. They snuck up on me gradually. Yes people told me to go to the Dr, and I wish I’d pushed it. I wish I’d paid more attention to what my body was telling me. Now I look back and I can’t believe I left it for as long as I did. We put up with things though, don’t we?
The worst thing about this though, is I didn’t know the symptoms of bowel cancer. None of my friends or family spoke about it either or said it could be serious. We all put it down to stress. None of my colleagues knew either. Yes, OK, we don’t like talking about our bowels, and believe me, hitting publish on this will cause some embarrassment. I’m putting my toilet habits on the web. But, I wish people would talk about it. Talk about the symptoms of bowel cancer. Because it might save someone’s life. Bowel cancer is the UK’s 2nd biggest cancer killer. I didn’t even know that. I thought it was one of the other types of cancer which gets more press. How wrong I was to assume that. To not educate myself on something that is so important.
If I had known, I might have been seen and diagnosed maybe 6 months before I actually was. The tumour in my rectum might not have had a chance to get to 5cm long. There’s a lot of shouda wouda couda in this. Don’t make the same mistake. Educate yourself, your friends and your family. We make so much fuss about what we eat these days, why aren’t we paying more attention to how our bodies are reacting to it all.
Everyone is different, please remember that. My symptoms might be totally different to another bowel cancer patient. But there might be something on that list. We know our bodies though. We know when something is wrong, we must listen to that and take it seriously. They’re clever machines.
Want to know more about bowel cancer symptoms?
See Beating Bowel Cancer – http://www.beatingbowelcancer.org/bowel-cancer-symptoms
Want to speak to a nurse about any worrying symptoms?
Call their helpline on 08450 719 301 or email firstname.lastname@example.org
Be Clear on Cancer
Launched today, Monday 30 January 2012. The Government’s first ever national cancer campaign, raising awareness of the signs and symptoms of bowel cancer.