Chemoradiation & steroid advice

Serena7 thank you so much for the insight into treatment. Just getting to know what may happen allays so many fears! 

I've got some Instillagel on order which people have suggested using if constipation arrives. It has an anaesthetic agent in it which helps if you use prior to a movement. I believe (though not confirmed) you can use this gel as a topical ointment on any sore bits too as a topical pain killer. 

Thank you for the tip re Medi honey I see that some hospitals send you home with this too. 

I have also ordered some Polymem dressings which are burn dressings you can use (non adhesive) that keep any burns moist. Good to use overnight apparently. 

I don’t think anyone can say I’m not prepared  although since I listened to the Bowelbabe (you, me and the big C) podcast on Proton Therapy… I’m now thinking … ooh could I have that? Proton Therapy is relatively new to the UK. It is radiation beam that blasts only the tumour causing minimal to no damage (and therefore less ongoing symptoms) to surrounding areas (normal radiation beams go through the tumour into surrounding tissues and organs). But it’s mainly used for children (so as not to damage cells whilst they’re still growing) so far more important for them than old me! Used to only be available in the US but now at The Christie in Manchester and UCL in London. So maybe one day there will be far less side effects which would be a joy! 

Thanks again everyone for your fantastic tips and advice!!!  

Yes, i have instillagel too and was prescribed this two weeks ago. Its great to rub on all over sore skin, as well as using before a BM, but do be careful if your skin is broken. I was advised not to use this on broken skin. It does tend to quickly release from the syringe in a big blob so just be aware of this. I now have a small area of broken skin around my anus and have been given morphine gel for that which does help.

They gave me polymem yesterday so I am trying this for the first time. The stocks were in very short supply though and I don't have enough to last more than two or three days. It is quite soothing but tricky to use as you have to keep it in place. I was given some mesh knickers which do the job but do irritate the vaginal area. I have been putting a piece of one of the cooling wipes that the hospital have given me at the base of the knickers which does stop this. 

Of course each time you need the loo, it all has to all be redone, which is annoying. I have never spent so much time in the bathroom! It's my last day at the hospital today, and I really cannot believe that it's gone so quickly. It seems only a couple of weeks ago that I was at your stage. I wasn't as prepared as you are either. 

Thanks for the information about Proton Therapy. It sounds interesting and I will have a look. Have you had your planning scan yet? If not good luck with that. Thinking of you

Serena x

Oooh thank for the tips re Instillagel I’ll be careful with that and get some morphine gel on order! (Will be able to open my own chemist at this rate). 

I think we are all going to be very well acquainted with our bathrooms!!! 

Yes had planning scan last Tuesday - took more time getting ready for it and the contrast than the scan scan which only took about 5 minutes! No tattoos which was a plus they have the new machine that means you don’t need them. Though to be honest a few dots really are the least of my worries right now! 

Congratulations on your last day at hospital!! Woohoo!! And well done!!!! 

Really cannot thank you enough for all your good tips, kind words and thoughtfulness. Means a lot. 

I hope that you can now rest up and heal quickly! Let me know how you get on with the Polymem but most importantly how how you are! 

This Weds 14th July at 11:45 is when I start… am nervous but keen to get on. Still feel like any moment someone might call and say “terribly sorry there’s been a dreadful mix up and there’s nothing wrong with you” it’s all so surreal! Hey ho! 

Thanks again Serena, keep in touch best wishes M x 

Hi Prettypinkroses

It sounds as if you are all set and ready to go. It’s great that they have new machines now that don’t require tattoos, although that part did not bother me in the slightest. It's really good to know that they are making improvements, though. I ended up having two planning scans, which was enormously stressful for me. I had a start date like you as well as an appointment list for the whole of treatment. Just one week before the treatment was due to start, my oncologist phoned, telling me that they could not use my scan as I had a bowel blockage. They told me to take laxatives for a week and come and get another scan. As a result, my treatment was delayed for a week with the added bonus of a really upset stomach, This seemed like the end of the world for me at the time as I had geared myself up for the start date and got so stressed about not passing the second scan.

Anyway, it all worked out in the end. But it does bring it back just how much those weeks pre treatment can affect anxiety levels. It sounds as if you are doing quite well in that respect. I wish I'd had the courage to come on to this site at the time and ask for some support. You are definitely in good hands here.

Thank you for asking how I am. It is now my fourth day into post treatment and things are starting to change a bit. It is hurting like crazy when I pass urine, but if I can get the sitzt bath filled up in time and apply some morphine gel, this really does alleviate the pain. My problem is finding the time to do this before I need to go as I have some urgency. My husband has been amazing, running to the bathroom to fill up the sitzt bath and making sure I am ok. Bowel movements are still painful, but I am managing, again with the gel and liquid morphine. I need to use the toilet almost every hour at the moment, even at night. So It's a constant routine of washing, drying, applying cream and dressings and getting comfortable again.

I do have some periods of time during the day where I feel quite comfortable and am able to do a few light tasks as well as some gentle exercise. The burns are feeling quite sore, but with the help of my special cushion that the hospital gave me as l well as some other’s I have, I can feel almost pain-free and get on with some emails or a bit of work. When I watch tv or read a book, I keep dropping off to sleep 

The polymen does help to sooth the sore areas and soaks up all nasty bits. I was told that one dressing should last 24 hours. I think this is more down to the extortionate price of these dressings though. Making them last is much easier said than done though. The first two dressings disappeared down the toilet in my urgency to go, and I have also dropped them on the floor. You are supposed to hold them in place with mesh knickers, which does do the trick. However you need to remove the dressings before going to the toilet, which is fine, as long as you’re not in a rush! Sorry if this is too much detail! Needless to say I am using a lot more dressings than I should, so be prepared for this.

My skin is only just starting to break around my groin and vagina. If the areas are away from excretions the polymen really does the job well as I am hardly aware of pain and discomfort. Its more tricky in those other places but once you are clean and dry the pain soon settles down.

You may find that it would be useful to have a table or surface nearby to the toilet so everything you need is in grabbing distance. This depends on the shape of your bathroom of course. I always make sure that everything is clean and in place well before the next time. A good-sized mirror is also handy so you can check that the dressings are correctly in place.

I wouldn’t worry too much at your stage of treatment though, as we are all different. Just concentrate on doing as many of those things you are able to do at this moment in time and have some fun. It’s good to be prepared but please do not assume that everything that has happened to others will also happen to you. Tackle things one step at a time and be proud of yourself for managing each day.

Serena x