My first experience with chemotherapy was far easier than I’d been expecting. I had my intravenous drip, felt some mild nausea and experimented with the cold. Pretty acceptable, really. Little did I know that the side effects of chemotherapy were just waiting for me to let my guard down…
The day after the IV Oxaliplatin, I started a 14 day course of Capecitabine. I’d then get a week off before repeating the cycle another 3 times. After that was going to be a couple of operations, one on the primary tumour in my bowel, and one on the metastasis on my liver. Following that would be another 4 cycles of the chemotherapy, and then freedom from cancer. Or so the plan went.
But, that was looking ahead. What was happening now was that I was starting on my Capecitabine, for which side effects were expected. As such, I was prescribed a bunch of other drugs to stem off the side effects of chemotherapy:
| Drug name | Drug type | Dose | Rate | Timings |
| Capecitabine | Chemo | 6 tablets | Twice a day | 14 days |
| Ondansetron | Anti-sickness | 1 tablet | Twice a day | 2 days |
| Domperidone | Anti-sickness | 2 tablets | Up to thrice a day | 7 days after Ondansetron ends |
| Dexamethasone | Steroid | 2 tablets | Twice a day | 2 days |
| Difflam | Mouthwash | Swig | 4-6 times a day | Ongoing |
| Loperamide | Anti-diarrheal | 2 tablets | Up to eight a day | 5 days, as necessary |
| Laxido | Laxative | Sachet | Twice a day | Ongoing |
This was the table of medications I was due to be taking. The actual tablets looked like this:
This photo was taken on an early day in the cycle, so the full range of drugs was on offer. It’s divided into 4 columns, because I had to take the Capecitabine 4 times a day.
By the end of the first day of the tablets, the side effects of chemotherapy were already making themselves known. This is an excerpt from my diary at the end of that day:
‘By and large, though, the first day of tablets has gone by pretty easily. Mild nausea, that weird sour feeling in my mouth when I start eating food, and, the still amusing tingling in my fingers in cold water. I feel a little fuzzy in my mind as well, which I’m not so thrilled about and I’m getting somewhat bloated but I’m putting that down to the Steroids, so it shouldn’t last long.’
Ah, how naive and innocent I was… Don’t worry, the naivete didn’t last long. This is what I wrote the following morning:
‘Right, so fun time is over. I’m feeling well bloated today and it’s because of the IV, the steroids are actually there to combat it. They don’t seem to be doing a great job at the moment!
Whatever is messing with my brain has gone far beyond fuzzy.’
These passages refer to a few of the side effects of chemotherapy, so I’ll address them one at a time.
The bloating was very uncomfortable. It stemmed from the Oxaliplatin and only lasted a few days, but I was glad when it was gone.
The adverse reaction to the cold both on the skin and when eating or drinking. This got progressively worse over the 2 week cycle. And cumulatively more acute as each cycle progressed. Within a month, I couldn’t drink anything that hadn’t been warmed up in the microwave, by which I mean orange squash. And Pepsi Max… you haven’t lived until you’ve tried microwave warm cola!
The sour taste in the mouth at the start of every meal. And from even thinking about certain foods like an Indian meal, or cakes. I couldn’t eat cakes while I was taking the Capecitabine. Talk about torture. Plain food, often just bread and cheese, was the solution for me. This effect is sometimes referred to as chemo mouth.
The mild nausea progressed to moderate nausea. And from there into dull, background nausea that made it uncomfortable to lie still but far worse to actually move. It also got progressively worse the more hungry I became. Which meant that, while I was only eating bread and cheese, I was eating a lot of it. I put on considerable weight during chemotherapy.
And, for me, the worst of the lot; chemo brain. What started off making me ‘a little fuzzy’, quickly became a whole lot worse. On day 2 of the tablets, I drove into town. As I was pulling into the parking space, I thought that I was going to clip one of the cars but my brain just thought, ‘who cares; keep going‘. So I did.
Thankfully I didn’t hit the car. And more thankfully, I was still aware enough to realise that I had a problem, which allowed me to safely drive home. But that was the last time I drove while taking the Capecitabine tablets.
On that journey, I noticed a couple of other side effects of chemotherapy: a ringing in my ears, and; a blurring in the focal point of my vision when looking into the middle distance. The visual problems didn’t really effect me after a couple of days, because I was more or less bed-bound. The tinnitus, on the other hand, has very distracting and took a long time to get used to.
But back to the chemo brain. After the first couple of days, I no longer felt fuzzy, meaning the dumbing down process had finished. The problem was that it left me feeling stupid. I’d been planning on spending these months reading trashy novels and binge watching even trashier TV. Unfortunately, I couldn’t concentrate enough to do either thing. Writing my diary took a battering too. I wrote a few words on the third day of the cycle and then didn’t write another thing until deep into the recovery week.
The absolute worst thing about chemo brain, though, was that it didn’t stop when the chemo did. For at least 6 months after the treatment finished, I felt slow. And it wasn’t until a full year after I’d taken the last tablet that I felt back up to speed.
Taking chemotherapy has a rather steep price. In my case, it left me bed bound for 16 days out of every 21. It left me unfit, very overweight and really unhealthy. And it made me stupid for more than a year.
Chemotherapy will save, or at least prolong, your life. But the cost to the patient is high. I felt trapped and helpless and mindless. I didn’t feel like me. The reason I mention this is that it is important for carers to understand that cancer treatments are tough.
There may well be a time when someone in your life decides they can’t take another treatment. You may disagree with this decision or not understand it. But there is a reason that people take that course of action: cancer treatments hurt, and they make you into someone else. A cancer patient may well reach a time when they just want to be themselves, without any pain. If it happens, you need to realise that they won’t have reached this decision lightly, and do your best to understand.
But we’re a very long way from having to worry about anything like that. Besides, there are more, fun, side effects of chemotherapy to discuss.
One of the more subtle side effects to sneak up on me was sensitivity to the sun. This made it very difficult to flop outside, for a change of scenery. Lying in the shade triggered the cold sensitivity and, so, was no use to me. Lying in the sun meant running the risk of sunburn, in no time flat. Not so much a problem in the UK, where the summer is very short, I think it’s due to be a Thursday this year. But in hotter countries, watch out.
One of the more insidious side effects of chemotherapy is what happens to your veins. The Oxaliplatin was delivered intravenously via a cannula in the back of my hand. As the drug went in, a coldness and tingling would spread up my arm from the cannula. Quite often, within a couple of days, the vein that had been used would stiffen up and become quite sore. A couple of days later, it was gone.
It was strange, I never noticed the transition from sore and painful, to not there any more. Stranger still was the absence of the veins in the back of my hands. They’d always tended to be quite prominent and I used to do tricks with them, for the girls: press hard on the heart side of a longer vein; run a finger up the vein to empty it; release that finger and watch the vein refill. Hours of icky entertainment. All gone, along with the veins.
I mentioned this to one of the chemo nurses and she assured me that it was perfectly normal and that veins deeper in the hand just got bigger to take up the load. So, harmless but disconcerting.
One of the strangest side effects of chemotherapy that happened to me, didn’t happen until well into the second set of four cycles. I developed Lhermitte’s Sign, also known as the Barber Chair Phenomenon. Again, harmless, but so very strange.
In a sitting position, typically on the edge of the bed, when I tilted my head to look down, there would be a twanging sensation, that I described, on Facebook, like this:
Basically, if I nod my head forward, it sends a jolt down the nerves in the soles of my feet. Apparently not that uncommon in my situation but, now I’ve noticed it, I can’t stop doing it; I look like a nodding dog!
It was, admittedly, quite entertaining.
Finally, there was the issue of getting the balance right between the medication induced constipation and the laxative effects of the Laxido. Because I was already pretty well obstructed by the extent of the tumour in my bowel, it was a difficult one to get right. Too little laxido led to abdominal cramps for days. Too much meant spending even longer on the toilet, if that was even possible.
Funnily enough, after the surgeries, and when I had my colostomy bag, this became a lot easier. I always tended to err on the side of constipation when I had the colostomy bag, because nobody wants diarrhea with a stoma. Oh, the tales you’ve got to look forward to, when I write about this…
Despite all the downsides, there were a couple of positives related to the chemotherapy. Firstly, I’ve always been something of an insomniac but, while I was taking the chemotherapy, that really wasn’t a problem. Dropping off to sleep was a cinch. In fact, during my rest weeks, when the insomnia was back, I occasionally found myself looking forward to getting back on the chemo. It’s not much but, as they say; every little helps.
The other positive was that hot chocolate really helped stave off the nausea. This was the perfect excuse to drink gallons of hot chocolate, right up to the moment I noticed my weight ballooning and checked the calories… Not good! The low calorie alternatives, sadly, didn’t do anything to ease the queasiness. In hindsight, I should have tried a good quality dark chocolate alternative. This would likely have had the medicinal benefits I was after, in a much smaller serving, thus removing the issue of the calories involved.
But, by and large, for me, the side effects of chemotherapy were tough. Not as tough as the complications of chemotherapy, which I’ll talk about next time, but hard work, nonetheless.
The important thing to remember is that the side effects of chemotherapy vary from person to person. The nausea never actually made me vomit, whereas for some people it can, although there are plenty of medications to combat this.
I was bed-bound for a lot of the time, but a lot of people don’t experience this; they’re able to function tolerably well. Many people are even able to work through their chemotherapy. Maggie Smith managed to keep filming the Harry Potter films while she was undergoing treatment. But then, Dame Maggie Smith is awesome.
The side effects of chemotherapy vary from person to person, but they get progressively more pronounced as the treatment continues. I was able to shrug off my first round of chemotherapy. But I was hospitalised from complications arising from the side effects, before the treatment finished. It’s important to be aware that things got more difficult; that it’s a cumulative treatment.
As the idiom goes, hope for the best and prepare for the worst.
Talk to your boss. Contact your mortgage provider. Talk to your bank. See what benefits you might be entitled to, to help you through the process.
Plan that the side effects from chemotherapy will be tough, and prepare accordingly. That way, if chemotherapy turns out to be easy for you, then you’ve lost nothing. If it turns out to be tough, you’ve got it covered.
36 thoughts on “The Side Effects of Chemotherapy for Bowel Cancer”
You are eating junk food with cancer, it’s like playing Russian roulette.
Research “Chris Beat Cancer” if u r serious about ridding yourself forever.
Hi John,
Thanks for the information, I’ll have a look.
All the best,
Paul
Chris did not beat cancer with his diet.
https://sciencebasedmedicine.org/chris-beat-cancer/
P.S. In the penultimate paragraph, you said “untitled,” but I believe you meant “entitled.”
Hi Beal,
I did, indeed, mean entitled. Thanks.
With regard to your Chris Beat Cancer point, this seems to reflect what I have found in these last few months. The people pushing alternative medicines have similar stories: Cancer; surgery; refuse chemo; alternative therapy…
They all then put their lack of cancer down to the alternative medicine and gloss over the surgery. They make no attempt to highlight that the surgery removed the cancer. They then accredit the failure of the cancer to return, solely to the miracle of their particular alternative therapy. Again, ignoring the fact that the surgery removed the cancer.
Normally I have no problem with this. Surgery removed the cancer, they’re safe enough; if they want to waste their money on alternative medicines, that’s their call.
Recently, however, I’m getting more people telling me that, as a stage 4 cancer patient, I should abandon conventional medicines in favour of their alternative route. And this I do have a problem with. Persuading someone who actually still has cancer to move away from conventional medicine will shorten that person’s life. These are the same people that shout about how Big Pharma is just exploiting patients for money, yet make no mention of the fact that the alternative medicine industry is worth $34 billion…
Ahem! Anyway my point is; if you know you’ve still got cancer in your body, stick to conventional medicine.
All the best,
Paul
Thank you for that information. I have Secondary Mestastis Ovarian Cancer. Had surgery, there were complications which I can’t go into. Tumour was removed. Started chemotherapy but had a bad reaction, chest pains, headaches etc. Was given some injections which knocked me about. Been unwell all weekend and now have cold sweats. It’s tough. You all take care and get better soon and enjoy yourselves. Christina
Hi Christina,
Sorry for the delay in replying.
Sorry also to hear the things you’re going through.
I hope things have improved for you in the meantime.
My thoughts are with you.
Take care,
Paul
The most profound, straight forward information. I appreciate you so much. Thanks!!
Hi Yoriko,
Many thanks for saying that. It’s so nice to know that what I’m saying is useful.
Take care,
Paul
Paul,
Thank you for sharing.
Would you mind telling me if your family tree had or has cancer? Both my parents passed away from cancer. Mom had breast; dad, stomach cancer. Dad smoked non filtered cigarettes. Started at 16. Died at 70. I’m hoping since I don’t smoke and always have maintained a good diet, no soda, sugar and get plenty of exercise, my chances of not getting cancer might be better. One can only hope. Stay well. Daniel 66 New Jersey
Hi Daniel,
My Dad also had Bowel Cancer at a young age. That said, the hospital checked the DNA of my tumour and said that it was not a hereditary type…
Which means that this is either a huge coincidence, or DNA sequencing is not fully understood yet.
Anyway, my understanding is that by taking such good care of yourself, you are far less likely to develop cancer. Additionally, should the worst happen, you are in a much better position to recover from it.
One thing I would add is: if your body starts doing something new and unusual, get it checked early.
Other than that, keep doing what you’re already doing and you’re golden.
All the best,
Paul
many thanks – it will help me a lot –
blessings to you and your family – Molly
Hi Molly,
I’m glad you’ve found the post useful but sorry that you’ve had to read it at all.
I hope all goes well.
Paul
Hi Paul
I am a doctor ,a gynaecologist .I am grateful for you for putting all the details that one goes through during chemo.Many times the patient wonders whether it is only happening to him.
Thanks for putting it across in such a positive manner.
Wishing you a healthy life ahead.
Hi there,
Many thanks for passing that on, it’s good to hear that I’m striking the right tone with these posts.
All the best,
Paul
What I read on the effects of chemo was excellent and I’m glad what was said every one is different some people can work. Me o had endometrial cancer tumor was removed surgery but my chemotherapy was. Taxcimal very stong people told me not everyone loses there hair I was a hairstylist. First thing the Dr told me I will lose your hair. That WS devastating my asset was my long thick curly blond hair. Gone
I thought o took it well . my friend bought me a great wig it was scratching and itching and made me sweat. And it looked funny I had know eyebrows or lashes. Well my hair is a growing and otd curly that was new. Its been 3 years and I still don’t feel that great but I am alive o can walk my dog and I have been swimming at the Y and I’m still greatful but I think I’m still depressed. I hope this will help someone thanks Diane
Hi Paul, I’ve just written an essay on she side effects of breast cancer treatment with some medical papers info. You’re more positive than me. Still I’m suffering severe hand joint pains from anti-oestrogen pills. I’ve stopped taking them and refuse to take any more. What can you do in life if you can’t use your hands for anything at all?
Thank you for this article. Excellent warning yet hopeful.
All best wishes for your future,
Marion
Hi Marion,
I’m really sorry to hear how tough you’ve had it. I’m likely more positive than you because I’ve had it easier than you…
I’m glad you like the article, and think you’ve made the right decision about the pills. If you’ve written an essay, you must like writing and that’s very tricky without your hands. I hope all turns out well for you.
Take care,
Paul
I have colon cancer also I stopped chemo in March and so far my scans have shown my cancer is gone hopefully it stays gone. I was reading your story and I saw myself I was on capecitabine 7 a day for 14 days but I had to stop them after 3 months they made me really sick and also my chemo made it so I couldn’t drink or eat or touch anything cold just like you I had to wear gloves when I wanted something from the refrigerator lol but that’s all behind me now ( I’m 71) I go every 3 months for blood work and every 6 months for scans. Hope you are doing fine by the way I had stage 3. Nice to communicate with someone who knows what your going through good luck
Hi Sandra,
I remember the first time that I experienced the cold sensitivity, I actually found it amusing… It didn’t take long for that feeling to pass and for it to become quite the annoyance!
I’m glad to hear that everything is going well for you. I’m also doing pretty well, having gone a whole year without treatment now. My next scans are in February, and I’m hopeful my run can last a bit longer yet.
I hope your next scans are lovely and clear. In fact, I hope all your scans are like that.
Take care,
Paul
Hi. I also went through a rough time with chemo! I had 3A! Took 3 months of chemo! Last cycle I stopped breathing! Whew that was something. So now I’m out since sept! 2 clean scans! Always a bit nervous though! What Stage 3 were you? How long out now? Wishing you all the best and love! Kate Lehrhoff
Hi ms Sandra. I am Therese, 57 yo and I have colorectal cancer, stage 3. I am scheduled to be operated then after radiation and chemotheraphy. I am so scared about the radiation and chemotheraphy. I am so devastated, drpressed and my anxieties grows deeper.
Hi Sandra,
I’m sorry to hear that you’re having to go through these things.
Sorry also that it’s taken so long to reply but I’ve also been struggling with depression.
Please get in touch if you want someone to talk to, and you think I could help.
Paul
Mourir et avoir mal juste pour des ados qui vont s’en fichent
Said by doctors :your cancer is serious but no so serious but serious???
Hi Paul,
How are you? Your article helps me get a glimpse and hopefully help me prepare on what my mother will be undergoing next month.
I pray that you (and all your readers) are doing well amidst the pandemic.
Hi Marina,
I’m glad that my post was useful to you.
Sorry to hear that your mother is having to go through this. How is she getting on?
I’ve been cancer free for nearly three years but have really been struggling with depression, which is why it’s taken so long to reply. Sorry about that.
All the best,
Paul
Six months ago I was also diagnose iv stage Cancer in lever and stomach as well ( Gist) …
After necessary test four months ago chemotherapy was started…
In last scan (ct ) couple Weeks ago report was quite satisfied, medicine is working well, blood reports were also with in limit..
So oncologist advise visit after 3 months with a fresh CT scan and continue treatment…
At the end your article was very useful for me…
Receive thanks…..
Hi there,
Sorry it’s taken so long to reply, I’ve been struggling with depression.
I’m sorry, also, to hear what you’ve been going through but am glad that my post was useful to you.
How are things now?
Take care,
Paul
You described my bout with stage 3 colon cancer and chemotherapy to a tee. Thank you
Hi Alison,
Sorry to hear that you had to go through it as well.
I trust that all is well with you now?
Take care,
Paul
Great article Paul, hope your doing ok
Thank you.
I’ve been clear for nearly three years, so things are definitely looking up. 🙂
Tubulovillous Adenoma is what some stranger said to me after my colonoscopy in April. I was in an operating room in December of the same year and
the head of the department of colorectal surgery said they got it all. Whatever that means. An MRI
Said a 4.2 cm mass had grown through the mesorectal fascia. Whatever that means. But of course thy got it all.
So now I worry about recurrence and even metastasis. Though no one has managed to say chemotherapy or even cancer to me. I worry and am sometimes terrified about the whole ordeal past and what’s to come. Because how do let it all go and say goodbye. I have never known how.
Anyway I found you on Quora and this is just like a message in a bottle but I’ve read what you wrote and felt sadness and hope and I’ve got some more information and insight into chemotherapy. Just in case someone manages to bring it up.
Hi Kayellen,
I’m really sorry to hear that you’re having to go through this. I hope someone has finally managed to come clean with you about what’s happening.
I’m glad you found my posts useful. Please feel free to contact me if you think I can help.
Take care,
Paul
THANKS FOR SHARING I RELATE TO YOU. I HAVE LIVER CANCER AND YES AFTER 2 YRS OF CHEMO THERE ARE DAYS WHEN I FEEL SO DROWSY AT NIGHT I BECOME MORE ALERT. I THEN NEED ZOPLICON TO HELP WTH SLEEP.IT ALL SEEMS ONGOING, HOWEVER THERE ARE NO ALTERNATIVES. GOOD LUCK TO YOU.
Hi Ken,
Sorry to hear about your battles.
I hope that things have got better for you, and you’ve now got the upper hand. Sometimes all you can do is hunker down and keep on keeping on.
I with all the best for you.
Paul