Diarrhoea Diaries - TMI? Never!
When applying for travel insurance and declaring my medical conditions (a really fun process - not!), I had to tell them about the medication I am prescribed - including cediranib (which, of course, doesn't exist as an option on their drop-down list) as well as the anti-emetics (anti sickness tablets) and anti-diarrhoea (essentially imodium). For each condition you're asked how long you've had it. When asked 'how long have you had diarrhoea?' it struck me that '2 and a half years' is a really long time to have not had 'normal' bowel habits.
I thought it was about time my blog got a post dedicated to the brown stuff - seen as it is my main side effect, and the bane of my existence some days. If you're squeamish, this blog may not be for you, though don't worry I don't intend on going into the gory details too deeply.
Before that though, something far more exciting. As you may have guessed, the travel insurance is because I am travelling. Indeed, I am currently above the clouds in sunny Australia, on route from Sydney to Cairns. We've just spent an amazing few days in Sydney, sunbathing on Bondi beach, drinking by the Opera House, admiring the views of the Blue Mountains, and seeing koalas for the first time. It's been really hard to wrap my head around the fact that I'm actually on the other side of the world and that Australia is a real place. We are visiting as my sister (Hannah) is studying in Melbourne - the perfect excuse for a trip, no? I'm here with my boyfriend (Jacob) and before planning this trip, Australia wasn't on either of our 'bucket list's, but since arriving we've realised how crazy that was! This country is beautiful. It is an extravagant trip, and very very far away, but well worth it if you can afford it and are capable of travelling this far. I am very nervous for the potential abundance of creepy crawlies as we move up to Cairns, but the anticipation of seeing the Great Barrier Reef and exploring rainforests outweighs the fear (just...). We're meeting Hannah in Cairns very soon and I am very excited, and next week we're off to Melbourne for a few days before heading back to London (I fully intend on bringing the sunshine back with me!)
Health-wise I am doing pretty well. After a bumpy December/January through which I felt pretty awful - diarrhoea most days, dehydration, fatigue, the lot, we have since adjusted the dosage of my medication and the side effects have been a lot better. My main concern was my energy levels so I am very glad to report they are much better. It got to the point in January where I wasn't even really able to work and I certainly had no capacity to do anything outside of work - cancelling plans and needing to lie down in the daytime. That's not the quality of life I want, and not worth it when my disease is relatively small and slow growing, so deciding to lower the dose was the best decision. That said, the higher dose and nasty side effects did their work, as my last scans in January showed disease shrinkage. So, I've still got cancer in my lungs, and likelihood is it'll never disappear, but it's reassuring to know the cediranib works at shrinking/stabilising it. Plan is to keep on monitoring me, and to keep on cediranib for as long as it keeps working and I can tolerate it.
I am so grateful my health allows me to travel. This holiday is giving me a new lease of life - it makes any/all the struggles feel worth it. Life can literally change in a second - even being medically fit to fly is a luxury. Being over 7 years post secondary cancer diagnosis and still well enough to take this trip is something I am not taking for granted, I feel so lucky and I can only hope this is something that lasts many more years to come. I have had to say goodbye to so many young friends over the last few years, who would have loved more time to see more of the world, and I'm always thinking about them wherever I go - taking a little bit of them with me.
Now, close friends of mine (and some unfortunate other Instagram/TikTok followers) will be used to my poo tales. My woes. Look, I have always been a drama queen and one to moan and groan about things, every ache and pain, any small inconvenience - I hate discomfort. When I was diagnosed with cancer, the drama queen part of me quietened down - cancer is a tad too serious to wine about in that way. Somehow, in my own way, I've just got on with it. I think it's almost so serious that I've gone the other way and been determined to keep positive. I have had my breakdowns, of course, but in general I have tried to get on with my life as normally as possible while still trying to process everything in a healthy way. If I wined about my cancer as much as I wined about my sore feet, I'd have no friends left.
Poo freaks people out. Lord knows why - it's something we all do every single day. If we didn't poop we'd all be dead. There'd be poop explosions going on in the streets. All the good food has to go somewhere.
Poo is something of a taboo (or should I say... tapoo?). Which makes life hard when you're someone who talks a lot, overshares a lot, and whose main chemo side effect is diarrhoea. But why should I mute that part of my life? To save others' embarrassment? To make me seem more ladylike? I say that's BULLSHIT! (hehe, excuse the pun, I'm on FIRE).
Diarrhoea is a huge side effect of cediranib, the TKI (Tyrosine Kinase Inhibitor) treatment I am on for my sarcoma. They don't exactly know why the drug causes diarrhoea, could be to do with something it does to your gut - to me it feels like it's my body's way of removing the poison from my system, but there's a reason I'm not a scientist. There are other side effects, of course, but diarrhoea seems to be the one that nobody can avoid, and is one of the biggest reasons for people having dose reductions/needing to come off the treatment. Other side effects are things like hypertension, nausea, sore hands and feet, an underactive thyroid, kidney/liver issues, etc. All that fun jazz, but with monitoring, dose changes, and medication, most things can be managed.
I have had IBS for many years, well before I was diagnosed with cancer. I first remember getting symptoms of IBS badly when I was in sixth form - it was on and off constipation and diarrhoea, and stomach cramps. But looking back I think I had issues even before then. I had feelings of not having fully emptied my bowels after going to the toilet, and then having reasonably urgent loose stools after eating certain foods (apples, in particular - I haven't eaten one in years because of it!). Because of my experience with IBS, I thought I knew what to expect with the diarrhoea. But let me tell you - TKI-induced diarrhoea is something else.
When I first started cediranib, I had no diarrhoea. Until about 2 weeks in - then I was getting it every few days, but it'd stop after a couple toilet trips. It went on like this for a few months. Pretty manageable. I thought, this ain't so bad! The diarrhoea itself is unpleasant. The urgency I experienced before with IBS symptoms was nothing like this kind of urgency - the kind of urgency where if I didn't make it to a toilet within the next 30 seconds I would either poop my pants, throw up, or collapse. Where upon arrival to the toilet it was literal explosions. And it goes from 0-100 so quickly, with no warning.
Unfortunately, it has got worse since first starting cediranib back in September 2020. Though things have been different depending on dosage and other things going on in my life, I generally experience diarrhoea most days. At its worst in January this year, I was having diarrhoea up to 7-8 times a day, often in the middle of the night. Some days were honestly diarrhoea every couple of hours, but with no obvious pattern - 2am, 4am, 11am, 2pm, 4pm, 6pm, 9pm, 11pm. This did not work wonders for my sleep schedule. The worst is in the middle of the night. It's dark, everyone else is asleep, you were fast asleep, but staying in bed isn't an option, you get up, the toilet is cold, you're in the loo for 10, 20, 30 minutes or more, counting down the hours till you need to wake up and go to work, feeling like you're going to vomit while you feel like you're losing all the fluids you drank before going to bed to try to combat dehydration... It's a lot and honestly gives me a LOT of respect for anyone who has undergone full-blown chemotherapy. I ended up setting up a group chat with a couple cancer-friends called 'Chat Shit' and they were surprisingly awake at odd hours in the night. Having some 'company' at those times in the night is a huge comfort for me, as I tend to have my darkest/loneliest thoughts then. It helps to think 'I'm probably not the only one up at 4am feeling awful, and when I get up tomorrow it's a new day and I can drink a coffee and do something nice' instead of 'I'm all alone, this is awful, I'm sitting in a freezing cold bathroom, what's the point, I'd rather let the cancer grow than live like this'.
If you thought the midnight toilet trips sound bad, then let me tell you that being out in public, nowhere near a toilet, is oh that bit worse.
In fact, it happened on day 1 in Sydney. Luckily, I had no toilet dramas through the whole 30-hour journey to Australia - something I was a bit worried about. And the first few hours of Sydney were fine. We had a delicious leisurely breakfast, checked into our airbnb, and set off for a stroll through the park to Sydney Opera House. We got to Mrs Macquarie's Seat (a really beautiful viewpoint of the opera house), again, all completely fine. It was beautiful warm sunny weather. We saw what looked like a possum sitting in a tree. Sublime. Until my tummy started to turn. 'Hmmm might just be a bit of a cramp, no big deal' I thought. It turned again. I turned to Jacob: "I think I'm going to need the toilet fairly soon" Jacob said "Okay, like soon soon?" I said "I think I can hold on a bit", and almost within seconds that turned to "No, we need to find a toilet right now" - if you suffer with this kind of urgent diarrhoea, you'll know this feeling well. Pure panic. I start to get really hot, sweaty, and faint, the cramps really set in, I feel like I'm going to burst. It's such an uncomfortable feeling. Thank God Jacob was there as I stopped being able to function. He looked up the nearest toilet - 4 minutes away! Phew! But at this point I wasn't sure I could walk for 4 minutes without pooping my pants. Looking back - this is quite funny. But at the time I feel so utterly sorry for myself. I waddled my way to the toilet trailing behind Jacob and stopping every so often to groan through a cramp. My stomach feels like a small gremlin is inside punching and stabbing and scrunching my intestines in it's evil fists. We had to go up a flight of stairs and ever step was agony. I wish I was being dramatic here but in that moment this is exactly how it feels. Luckily, we made it to the toilets, and sure enough....there goes breakfast :').
Afterwards, I usually feel fine. Often I'll get more 'waves' or 'rounds' of diarrhoea but there is some relief once I've gotten to a toilet. Sometimes a bit dizzy and thirsty, on bad days I can feel quite drained afterwards. But it sometimes feels like nothing even happened. It is wild that my brain can go from 'this is the worst, my life is terrible' to 'all is good with the world' in a matter of minutes. I wish I was exaggerating.
On this occasion, I proceeded to have another 3-4 bouts of diarrhoea, so not a good day tummy-wise. But, all the same, one of the most memorable days of my life, for all the right reasons. The rest of the holiday has been on-and-off nausea (a bit more than usual), and more diarrhoea, but still, it is not taking up space in my mind and it isn't ruining things. It's a bloody inconvenience. It's horrible in the moment. It takes up time I could be sight-seeing - it's a bore. I feel guilty/worried about leaving Jacob to just sit and wait for me while we could be doing something nice together. It's a reminder of my diagnosis. I'd rather be without it. But, it is out of my control, and if I didn't have cancer and I didn't have these horrible side effects, I'm sure I'd find something else to complain about - the heat, the bugs, my sore feet, my headache, lack of sleep (and I do also complain about these things!). I'd rather try to enjoy as much as I can while just accepting my health for what it is at the moment (and while making sure I drink lots and lots of water of course!)
One of the worst experiences with this side effect so far was quite recently - and it's not because of how bad I felt, but because of people around me and the circumstances. I had been feeling rough all day at work, just not quite right, very tired, nauseated, quite bloated (a telltale sign I am due the runs...), but it was a Friday and I had a night out planned. This night out had been on the cards for literally months, I was not willing to miss out. So I headed out after work. It was on the tube that my stomach started to churn and I knew diarrhoea was coming. London tubes have no toilets - so I popped a couple anti-diarrhoea pills and hoped for the best. Luckily, they got me through the journey but once I got to Liverpool street I headed straight to the loos. Once that feeling had sort-of passed, I made my way to the bar to meet my friends. Still not feeling great, having popped some more pills (this sounds bad!). At the bar, the stomach started churning again. Down to the loos - barely a sip of my drink drunk. More diarrhoea. This is fine, I've handled this before, I can do it again. I was planning on having a couple alcoholic drinks, so even though I had no appetite, I knew I should eat, so I ordered a falafel and hummus salad. Sure enough, more diarrhoea. I spent most of the time at the bar in the toilets. Again, this is horrible, but not the worst, I knew it'd stop eventually, the pills would work their magic, I just needed to make sure to drink lots of water.
However, it's the embarrassment for me, having an episode like this in public toilets. I start to get really anxious about all sorts of things concerning what other people might think or say, and this was the first time I did hear people commenting. Drunk people just SPEAK without thinking. A couple girls came into the toilet, one said 'Ooops, someone's done a poopoo!' - I actually thought this was quite a funny way to comment. I knew it was smelly, I can't help it, I wish it wasn't but it was. This was manageable. But it was the next group. A group of girls came in and one came into the cubicle next to mine. She said 'Guys it STINKS in here!' and she continued 'It really stinks!!' 'Someone's done a shit!' 'Someone's got diarrhoea!' 'Why do it in here????' 'Go home!' 'Why don't they just shit in a bucket outside, it stinks!'
I felt so ashamed. Maybe I should've just stayed at home? I went bright red (redder than I was already). I felt like calling my mum and crying and just going home. Of course, I had to wait in the cubicle before I came out because there was no way I wanted to come face to face with those girls. Imagine one of them turning to me and saying something about the smell, what would I say? I had this anxiety rash all down my neck and chest, would they know it's me? I wish I had the guts to shout or walk out there and say 'I'm on cancer treatment and having bad side effects! You shouldn't be so quick to laugh and judge people!' but my fear is always that they'd have a come back, or get defensive. You'd be surprised by how many people are quick to think that cancer patients/disabled people just shouldn't be out and should just stay at home.
Fortunately, my friends were lovely about it, and comforting, and I made it to the night out in one piece and had a great time. I did text my mum, but I didn't cry! Life is too short - and it's just a bit of poo. I do wish people would grow up, but I don't think those girls are bad people for saying what they said - people find poo funny, and I'm sure they wouldn't have intentionally embarrassed anyone. I've probably been that person before to say 'that STINKS!' without thinking about how someone around me might be feeling when hearing that.
I have plenty more poo stories if you're interested. If you've found this funny then maybe I'll write about some more but I imagine most people don't enjoy reading or talking about shit as much as I do...
Some people like to try to help with my side effects by offering advice. This comes from a good place. Like, 'try eating rice'. But I'd like to point out, that eating plain rice and white bread for the rest of my days, is not actually a sensible solution. I know certain foods I eat and things I drink (e.g. alcohol, burgers) make it worse, and so I try to limit these, but also, the root cause of my tummy issues is my treatment. So, the most helpful thing I can do is take imodium, keep hydrated, and keep positive (and keep my consultant informed if things get too much!)
I hope this post has given you some insight into life for me at the moment, as someone living with an incurable cancer diagnosis. I am in a reasonably unique position, having had years of stability and with actually very small amounts of cancer in my body, but I know I am not alone in my experiences and I am not the only one living the way I am and experiencing the side effects that I do. I find it comforting to read poo-anecdotes from fellow cancer patients, so if you are reading this from that perspective, I hope you have found some comfort reading this. I also like to think that if you know someone with a diagnosis like this or are a family member or carer or friend, that this blog gives you more insight. If you want to help someone who experiences these kinds of side effects, just being there, listening, validating, having patience and empathy, and googling the nearest loo when needed, is the best thing you can do!
Thanks for reading, and if you're wondering if it's okay to laugh - as long as it's with me and not about me, then you're good!
Until next time.