My journey with rectal cancer: What's your experience?

I was diagnosed with Rectal cancer in June 2019. My treatments included 2 (6 treatment) rounds of chemo; chemo-radiation combination for five weeks, Rectal surgery to remove tumor & place ileostomy; surgery to reverse ileostomy& then the final (second round) of chemo. My temporary ileostomy was for six months. I was very adamant with my surgeon that she do everything to make sure this was not going to be permanent. She could feel my tumor with her middle finger & she is not a large person, so that’s how far down the rectum it was. I have recovered from my surgeries. It is quite a journey following surgery, takes time to get to know your new normal, at least in my case. I am 2+ years cancer free at least in that area. I may have an issue in my lungs currently being diagnosed. Other than that things were going quite well as l adjusted to my new normal. Don’t get discouraged during the process. Reach out to people for help! There is light at the end of the journey! There are support groups on the internet of many people who are and have gone through what you are about to experience. I have to say that I was always positive through my journey & always treated my care givers with the utmost respect & kindness. Hope this helped!

Day 40. December 15. First day of chemo today, so how was it?

The build up was worse than the actual experience which was comfortable, pain free and with wonderful caring staff looking after me throughout. The whole process took 4 hours from start to finish including 2 hours for the infusion of Oxaliplatin. I left with a bag of pills to last 14 days including Capacitabine and various others to counter any effects of nausea, diarrhoea or constipation, should they happen.
The main side effect explained was a feeling of difficulty in breathing if cold air was taken in or eating cold food / drinks but this would only be temporary and could be relieved if deep breaths were taken in through a face covering. This happened whilst still in the hospital room when I tried drinking some cool orange juice which was slowly warming up after coming straight from the fridge. It was quite a shock to experience the reaction but a few deep breaths soon relaxed the back of the throat and everything was fine. Owing to the outside temperature being -5C / 22F it was particularly important to wrap up well on leaving the hospital and when getting home.

Another side effect is tingling fingers when touching cold objects but I'm wearing thin cotton gloves to overcome this (very useful when extracting a bottle of white wine from the fridge this evening to make a sauce for the fish dinner!)

So all in all not too bad so far. Pills have been taken, more tomorrow and for the next 14 days over Christmas and then 7 days holiday before starting the whole process again. I'm expecting to get gradually more fatigued as the treatment proceeds over 12 weeks followed by a month of recovery.

I hope this story might help those about to go through a similar experience. And for those who are more advanced in their treatment or who have finished, it would be good to know what else lies in store!

Thanks for sharing your story; it is helpful to hear about others going through similar experiences. I have stage 4 colon cancer that had spread to the liver. They removed the masses in my liver and colon, but unfortunately it had spread to other areas.

I have had 13 infusions of Oxaliplatin, 5 in the spring of 2021 and 8 since this August. My experience is that the issues with the cold start fast and furious with the infusion, but start getting less intense after about 6 days and I can usually drink orange juice right out of the fridge with only a little discomfort after about 8 days. I have learned to take smaller sips when drinking anything colder than room temperature.

You are very right about bundling up when going out in the cold. Anything below 50F and my nose and mouth also get the slightly painful tingling, and some mild cramping in my hands. I keep a rechargeable Zippo hand warmer near by even in the house to help with the hands. I'm not looking forward to a Chicagoland winter - let's hope all of us have a short and mild one!

Thanks for your reply and tips for dealing with the cold. It's unusually cold here in the UK, -6C this morning but bright and sunny. We have mild winters usually and rarely see snow in the London area. I hope your Chicago winter is not too cold and that you remain comfortable.
Best of luck with your continued treatment and thanks again.

Day 46. December 21. Six days into chemo and a different story now! It started well and continued fine until Monday evening / yesterday when a severe bout of constipation set in, plus increasing fatigue, necessitating several calls to my helpful hospital team. Not sure of the cause, possibly the anti-sickness pills prescribed rather than the Xeloda. Anyhow, a Dulcolas pill on Monday evening, and 3 packets of Movacol yesterday eventually shifted the obstruction but has left me sore and lacking in energy through not being able to eat much. I was worried about the effect of all the straining on my reconnected colon but a nurse said that after 6 weeks I should be fine, which was a relief to hear.
Has anyone else had a similar experience?

Martin, that does not sound like it was pleasant. You must’ve been grateful to have been able to connect with a symptom management nurse before the holiday. I’m tagging @jennipwalters @bea1972 @opheli @suziq52 @kenc and others to see if they have experienced similar issues with constipation while on chemo and what helped.

How are you doing today, Martin?

No. Did not have similar symptoms.

Thanks, Colleen. Any advice / tips from others would be much appreciated. It's a lot better now and so it could have been the combination of the Oxaliplatin, Capecitabine (Xeloda), steroid and anti-sickness pills during the first 3 days that caused the constipation? But nearing the end of the first cycle and a 7 day holiday coming up before starting the second cycle. Yippee!

Martin77 it has been interesting reading your journey. I was diagnosed with anal cancer in April of this year 2022. My treatment was very different from yours. I didn't have surgery but had 6 weeks of radiation and 2 weeks of chemo while doing the radiation. For the chemo I was hooked up on a Monday and wore a pump for 4 days during the first and last week of radiation.
Radiation was bad, I hope you don't have to go through that. Treatment went well and it looks like the cancer is gone but now I'm having side effects from the treatments. The chemo caused a blood clot and now the blood thinners are causing some very unexpected bleeding. Its been hard to stay positive as I just wish I could put this all behind me. Keep posting about your journey, it helps to know I'm not the only one on this path right now.

Hey Martin, I'm 2 weeks ahead of you having been diagnosed with a 10cm rectal cancer 4 weeks ago in Australia. I have had the MRI's & CT's & the Investigation of a liver issue which came back clear. I have also had a PET scan yesterday looking for Mets.
I have an appointment with surgical team next Tuesday, followed by Radiation Oncologist & Medical Oncologist. I think the plan is concurrent radiation/chemo, but with get confirmation Tuesday. I need to ask if you or anyone else with this diagnosis suffers from monumental amounts of gas/wind which is very painful? I am taking large amounts of supplements & have started a process of elimination beginning with high dose Vitam C to see if this is causing the issue. Do you be much pain?