Chemoradiation

AnnaDuck,

Most of us on these pages have been where you now are. Having not experienced any surgery since 1959 (tonsils) I wasn't sure of the outcome either. I can truly say that my treatment under the care of the NHS was first class and couldn't be improved upon (food aside!). Also, the experience from beginning to end was pain-free, thanks to anaesthetics and after care. When surgery is complete your spirits will lift. Just don't over exert yourself for a few months until you know that the wounds from surgery are fully healed within.

As for a stoma, I have two - the second being a surprise. The lesson I learned is that despite of all the scans and tests the surgeon won't be completely sure until he or she can physically see what they have to deal with to give you the best outcome possible. From what you say there is a 1 in 5 chance that you won't need a stoma, but try not to worry about it. When you consider what you are up against at the moment it is no big deal and - believe it or not - has certain advantages.

Don't worry about matters over which you have no control, it won't achieve anything.

Dulac

Thanks Dulac

It's good to connect with others going through the same issues. Did you get any side effects from chemoradiation - I know everyone has a direct experience but wondered how bad  they could be.

AnnaDuck

I'm sorry you are going through this! 

Personally, I had a very good experience with chemoradiation. I was already having diarrhea when I started but it got worse during treatment. I also got some radiation burns which responded well to the special cream they gave me. Otherwise, nothing. I had much more severe side effects to the infusion chemo. 

Everyone is different though and others had more side effects from the chemoradiation. 

I ended up with 2 stomas, colostomy and urostomy.  My surgery was less than 4 months ago and I am already well acclimated to my stomas. It is much worse in your imagination than the reality. I read a lot about stomas in advance and it really helped me adjust. 

Also, there is a stoma board here that you may wish to join. 

Thanks Susan13

I'll have a look at stoma board although trying not to think that far ahead. It's amazing what your imagination can contour up sometimes I would like an on/off button for it!

Will keep you updated on my progress.

AnnaDuck,

Loss of taste and smell in general.

A sense that the radiation was still cooking the tumour for some time after the treatment finished. Not uncomfortable and possibly just psychological. 

An occasional feeling of mild sunburn to the skin around the treated area. Not uncomfortable and treated with E45 cream, which works quickly.

That's about it.

Dulac 

FWIW, one of my surgeons told me that these radiation continues to work in your system for about a year. So the sense that it was still "cooking the tumor" was probably accurate. 

Thanks for your insights. Just taken chemo tablets ready for week 3.