Chemoradiotherapy treatment for stage 3 rectal cancer. Hoping for coping with side effects tips, particularly during travelling.

Hi Animal. It’s a good few years since my chemoradiotherapy and someone people have a worse time of it than others but I’ll answer your questions honestly and from my experience.

Ive not heard of laxatives being taken before the sessions so I’m wondering if this is to do with the ‘marking up’ for the radiotherapy. I was tattooed with 3 tiny dots to mark the tumour and I seem to remember it being done under an X-ray or scanner so maybe that it is something to do with it. The actual treatment seems to depend on the position of the tumour - I had to lie on my front with a full bladder but my friend had to lie on her back with an empty one.

I was given a bag of medication at my assessment. The chemo tablets, antisickness, loperamide, dioralyte and I think I took some sort of steroid tablet for a couple of days? I was also given a shower gel to use on the area being treated and also a moisturising cream. It’s important not to use any old cream as some creams may contain zinc oxide. All this will be explained to you and the radiographers check that you’re ok at each visit. I think I also had a mid treatment check with a nurse to check that my skin was still ok

My treatment was in a large city several miles away and not somewhere I fancied driving to so I used to drive to the station carpark, get the train to Leeds, then the bus to the hospital then the same in reverse and then go into work. I personally liked early morning appointments as there was less chance of a backlog but then the traffic may be busier? I was given a 5 week appointment schedule but they were happy to change times where possible. 

The chemo tablets are quite a low dosage which enhances the effect of the radiotherapy. I started to suffer with tingly feet towards the end so kept them well moisturised with Aveeno with Shea butter and this stopped after a couple of weeks.

Here’s a link to a post that we started about radiotherapy so hope it helps

 Radiotherapy care top tips ! 

Take care

Karen x

Thank you Karen,

Your reply and the link are really useful and supportive.  Hopefully I will get more info on Friday then.  

You had quite a journey to do for your appointments and didn't have any accidents and that helps my confidence to hear that.

 
I had to do the low fibre diet and laxatives before the planning scan too, so was surprised I needed to do it again for first treatment.  (The laxatives kicked in BIG time just as they called me in for the planning scan, but at least that made the team laugh as they watched this crazed woman running in and out of toilets, while trying to hold on to a full bladder)! 

I haven't been given any of the RT appointment times yet, just the first one for Monday, which means planning lifts is hard.  The letter also says arrive early for bladder and bowl prep, so not sure what the bowel prep will entail.

I'll have to add Aveeno to my shopping list, good to know what works for people. 

Thank you so much :) 

x

Hi Animal. I finished my 5 weeks of chemo radiotherapy on Wednesday . It was an hour and half drive each way (3000 miles over 5 weeks!) so I had exactly the same worries as yu have. I didn't have to take laxatives thank goodness! Every session started with what I called the water torture ie drinking 3/4 cups of water to ensure a full bladder then hoping the person in front wasn't delayed making me need to hang on longer! There was a lot of trouble with the machines as the hospital I went to eventually didn't get there well in advance as invariably I had to way. I had diarrhoea as a main side effect so it was trial and error eating the right foods. I found white toast with peanut butter and a banana helped strangely enough . I also bought some pads from Amazon Tena PRC skin for anal leakage  which I used inside my pants for added security on the journey. Initially I was very self conscious about these bit soon got over that and I'm glad to say they were never actually needed. You can also get sick bags online through Amazon- again never needed but I kept them in the car. 
for my skin I used aveeno with colloidal oatmeal which worked well. . Don't use sudocrem if you get sore skin as jt reacts with the magnets! I can't say I enjoyed the 5 weeks but looking back they did go quite quickly and my remaining side effects are the troedness and a sore bottom for which I can now use sudocrem. 
if you want to ask any more questions I'm happy to help . Hope you get on fine I'm sure you will 

Claire x

So to clarify - I was 'Animal' but for some reason the site made me change my user name. 

I have just completed week 4 of chemoradiotherapy  for rectal cancer, so will update this post as it might be useful to others who have the 'fear' like I did.   It is true that you mainly see posts where things don't go to plan, but there are  so many when it is OK, they just don't post.

I started off wearing a masive pad in my pants for travel -  as was fearful of any explosions during travel.  (guess once you have done the colonoscopy prep, you are very wary of explosions).   The laxatives for the planning sesson didn't help either.

To date I have been fine.  The CRT has stopped my bleeding which is a  huge blessing, less urgent trips to the toilet  - and I've not had any need to take immodian.   No one warned me about having no gas/wind before the RT, so have learned to keep to a fibre free diet during treatment and windeeze helps too.   Hanging around with a full bladder during treatment delays can make things harder with wind, but you learn to cope.

I do get nausea starting on day 4 each week, but haven't needed to take the anti sickness meds yet, have managed it with ginger and toast.  Aware that this might change.

I still have a week to go, side effects are happening and building, but I have the confidence to travel without fear of leakage at either end. 

The RT team are fabulous with meds to help with other symptoms.  I have said if I have any concerns and they have gone the extra mile to make me comfortable, give me meds/creams, or prescriptions.  

Just wanted to share this as I was so worried when I started out.  I'd also like to thank everyone who responded - it all helped and gave me confidence.

I'm doing the pelvic area moisturising twice a day with Aveeno, I have skin changes   (hands and feet moisturising too because of the chemo).  I have a bit of pain passing poo at the moment, that has taken 3 weeks to happen,  but have been given some excellent relief for that as it is suspected that my skin is breaking down around my anus.  (Yep, said 'anus'). :)      Didn't realise I could sort out that discomfort until I said - and I'm so glad I did say very early on.  I felt normal today for the first time in months and know that the 'cure' is pain relief and healing too.

Experience tips are - say about anything you are experiencing, no matter how small you think it is - the team have bags of tricks that make a huge difference and can stop things getting worse.    Eat low fibre, take windeeze if you can as gas does build up when you are coping with hour long plus  RT delays while trying to hold a full bladder.  Gas/wind can delay your treatment session, so fart as much as you can while hanging on to your full bladder.    Take the team chocolate biscuits at least once a week.   If you can, talk to people in the RT waiting room, it is a support centre on its own.   No one wants to be there, but we are all there. 

One week to go - 3 weeks to recover - then full on chemo.  I've got this!  Three days booked in those 3 weeks to enjoy a bit of sea. 

Big thank you for everyone that responded to my panic - so appreciated. 

x

Hi and Thankyou so much for the update - recent personal experience is so helpful to others starting out. You sound to have coped really well and a few days break is richly deserved. 
Enjoy your break and, as you say, you’ve got this  

Take care

Karen x