Radiotherapy

Hi, I finished my treatment on the 3rd of June this year 28 "Nukes" over almost six weeks and Chemo. Of all all the information sent to you I read -  "After finishing your course for 7 - 10 days afterwards you can get worse before you start feeling better"

This misled me as I was counting the days off and expected to feel better very soon -  Wrong. It took me say 6 weeks for my bum to heal, the soreness but the real problem Is with your digestive system. This takes a very long time to get better. I felt sick for a very long time, say two months. Mucus and changing underwear many times a day, just mucus leakage. Also going to the toilet several times a day. After three months I could go out for six hours OK, not going to the toilet. Mucus from bottom still hanging around but manageable.

Now 5 months on much better but digestive system still not normal but OK. Still have to avoid gassy foods and alcohol not good. Wine can be an irritant so stick to one glass occasionally. Beer, one pint the gas doesn't help. Trying different foods now but I find plain food best. I told my Oncologist that I know my digestive system will take a very long time to be perfectly normal, he didn't disagree.

I had my MRI and CT scans 7 weeks after my treatment finished (The treatment is still working even though you finished the course) that's why you wait 6 - 7 weeks for your scans. No sign of cancer but now checks every three months. Hope this helps, wish I had someone or found this site earlier to give a real life experience of the treatment for bowel cancer. Yes everyone is different but the way I look at It is , if you break a leg and I break a leg we still both have broken legs. My treatment was over 5 weeks and three days. I don't have any other underlying health issues and are age 76. Regards.

Hi Ker,

Congrats on getting to your last week! 

I was surprised at how unexcited I was to get to the last days. It just seemed that every day more was too much for me and my poor butt.

I was also surprised at the aftermath. I don't want to be alarming- and not everyone experiences it- but for me, the first two weeks after treatment were the worst. That being said, NOT going to treatment every day was, at least, something.

And then it slowly started getting better. The fried skin finally began to heal, bowel movements became less fraught with fear, I didn't have to weigh everything I ate with the projection of how bad it would be coming back out.

This morning, 7 months after finishing treatment, I've got my first follow-up and he'll schedule my scans. 

Keep reminding yourself that you're in the home stretch. Hang in there!

Suz

Ker25, this must have seemed like such a long journey to you but only three (maybe two by now) more treatments to go. When I finished the overwhelming feeling was huge relief that that part of the treatment was over, no more trips to the hospital and life was so much better.  For me the first two or three weeks after treatment I spent a lot of time in bed.  I was absolutely exhausted and in a lot of pain internally and externally with the burns around my anus.  I was given liquid morphine and codeine which my husband fed me and it kept the pain under control.  However, both also caused constipation and none of the stool softeners or laxitives helped so I literally came off cold turkey about four weeks after treatment ended.  My bottom and the skin around my anus and internally were still very sore, I had several appointments with the tissue viability nurse at hospital who was so helpful with dressings and Flaminal Forte gel.  Bowel movements I did under water in the Sitz bath which was helped with the pain.

Get all the help you can, I know you have a young family and I am hoping that the team you had in place is still there to help you through this - it doesn't last forever and there is light at the end of the tunnel.

Will wait to hear how you are getting on, thinking of you.

Irene xx

PS Just saw something on another post that reminded me, I wore Tena pants in the early days, when I stopped taking morphine it went the other way and I was so afraid of being caught out.

Hi Ker25, 

I know you replied to me just before so thought I’d drop you a line. I finished treatment in March this year. The first 2 weeks after were really the worst in terms of pain and there was funny discharge which wasn’t pleasant, the worst bit was the stinging when having a wee and I would dread going however found it was easier the more I drank water. I’m 36 years old and I think my skin healed pretty quickly after those 2 weeks. I was pain free by about 2.5 weeks and then went on holiday at 6 weeks post treatment and back to work 7 weeks post treatment. In those first couple of weeks I advise rest, plenty of water, pain killers and piriton for the itching if you are able to take it. I know the radiotherapy team provide some good pain relief too so get what you can from them! 

Wishing you all the best with your recovery xx

Thankyou for your reply. It’s good to hear others experiences. Glad to hear it worked for you. Fingers crossed mine does too xx

Thankyou for replying, I have a stoma appointment I’m fortunate enough that going to the toilet hasn’t been an issue. I’m so glad as it sounds awful. 
Hope your appt this morning went ok and fingers crossed your scans show what you want xx

Thanks Irene. I ordered a site bath today as it’s becoming painful to pass urine. Thankfully I have a colostomy bag so that one less thing to worry about. 
move got lots of pain relief and the kids and my husband are going away next week for 5 days so il hopefully get some good rest. Xx

Thankyou I will do that. I’ve just started getting the pain when weeing so I’ve ordered a site bath. Im hoping my skin will recover quickly as I have a stoma so fingers crossed that works I’m my favour. 
Best of luck xx

Hi Ker25,

Congrats on almost being done with your treatment! I know you had a long road and I so hope this will be the end of it. I do have to say the week following treatment was pretty miserable. It took me about 9-days to start to feel some relief. After that my skin started to heal and the pain started to subside. I was on some heavy pain meds, which I slowly started to tapper off around the second week after finishing treatment. All and all, it took me about a month to heal. I did continue to experience fatigue for about a year. I had a neurological evaluation and it showed that I did have some mental impairment also known as chemo brain. It has improved over time. Get as much rest as you possibly can over the coming months.

I wish you all the best and am keeping you in my thoughts!

Hopie xx

Hi Ker25,

Firstly congratulations on getting through your treatment. My symptoms continued building & peaked at day 11 after my last day of treatment, after that I turned a corner & things for me healed pretty quickly, during those 11 days I just used the creams given by my oncologist & radiotherapy team, had lots of Epsom salt baths, rinsed Netflix, Amazon Prime etc., & slept a lot. Someone said to me towards the end of my treatment to keep my eye on the prize & I tried to focus on that during those 11 days, I went back to work on a phased return 5/6 weeks later. Just remember we’re all a little different & often as difficult as it is sometimes a positive mental attitude goes a long way. 

Nicola