1st appointment

 https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/227598/radiotherapy-care-top-tips

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/general/221768/chemo-care-top-tips--

Hi Kell Sug 

You are in good company . It’s amazing how we can’t recall everything despite desperately trying to take it all in .

I have linked in two threads . One dealing with the radiotherapy . Most people report to finding it quite tolerable . Someone explained that it’s very targeted now and that helps with side effects .

The other deals with chemotherapy . Some of the side effects won’t be experienced until he does the second lot of chemotherapy .

Someone here suggested taking it step by step and one procedure at at a time .

It is a protocol that a lot of rectal patients have in one combination or another . Hopefully they are around to share but this will give you some insight from those that have been there with first hand experience.

Take care ,

Court 

Hi court

Thank you so much for the info. 

The notes I made make no sense what so ever lol

I am worried my husband will have all side effects and I just want to be prepared just in case.

I will be taking all tips in and hopefully will be able to help my husband the best I can.

Thanks again

Kelly

Hi Kelly. Courts given you some really good links to previous posts. I had chemoradiotherapy back in 2016 and it shrank my tumour by 75%. The standard procedure then was chemo after the op but it’s now been found to be more beneficial to have it before. 

I’ve been ‘no evidence of disease’ since finishing treatment in 2017 and happy to answer any questions 

Take care

Karen x

Hi Kelly

i have just joined the forum and saw your post. I gave the exact same treatment plan as your husband and due to start my sessions on Wednesday. Perhaps we could share our experiences in this chat? I read the info on the link which was helpful. I really hate having a full bladder so worried about that bit weirdly as I’m bound to need a wee part way through! Also not sure now if I need to lie on my tummy or back . Such strange things to worry about! It’s a long drive from my home to the hospital so 3 hours for a 15 mins treatment every day for 5 weeks

Hi Doris

Thank you for getting in touch. 

I would like it if we could share our experience although my experience will be totally different from yours. My husband starts his treatment on 11th July so not long after you. We live quite close to the hospital and my husband is adamant he is going to drive. I don't drive (something which I deeply regret now) How are you getting to the hospital? 3 hours is a hell of long way for you to travel everyday I do hope somebody is going with you. Good luck with the treatment and please keep me updated.Take care

Kell xx

Hi Kelly, my husband is driving me thankfully but it will make it a long day every day, I will let you know how I get on,x

Hi Kell Sug

I had 5 weeks of Radio-Chemotherapy using the Cape drug taken at home. That was from 9/2/23 to 15/3/23. I was looking at the list of side affects and making all sorts of arrangements for not being able to drive, shop or walk the dog.

I waited week by week to be struck down in my tracks. But nothing bad happened!!

Slight tingling in palms and finger tips, afternoon lack of energy, lack of appetite some days, generally feeling a bit out of sorts mentally, sore prostate from radio. These symptoms went on for around 2 months after finishing the drug.

I drove myself in daily 15 miles no problem and fell in love with at least 3 of the radio therapists.

In a weird way I miss those days, the structure it gave me in this unknown period of my life and the staff who are just brilliant.

Hi Richard21

I read your message and it seems you coped well with the Radiotherapy. It was great that yoh could drive yourself too.

That is the plan with my husband, he wants to remain in control as much as he can through this.

How are you now? 

Yes I felt very much that I wanted degrees of control as much as I was able to. 

I'm just chilling watching Glastonbury a week on from my op that has removed the part of bowel and rectum affected as the Radiotherapy and Cape tabs did a great job of shrinking it down. I may or may not need more chemo but will find out in a month or so. 

It's just step at a time, stay positive and best wishes. 

Richard x

Hi Doris58

I have been thinking of you today, dis you start your treatment today?

If so how was it? Tony (my huaband) starts his 11th July.

Hope all goes well. 

Take care

Lots of love Kell xx