End of Chemoradiotherapy any advice for coping with radio burns is much appreciated

Hi 

they only thing I found that really helped me was jelonet seemed to take the heat out that’s all I used with cocodamol  I found the things they gave me wasn’t working as I had a severe reaction to the radiotherapy took six weeks to heal but got there and saw oncology last week and after examination she said my tumour had gone and no sign of it which was good news so hang in there it does get better in the end

I do know what you are going through it was horrendous but you will get there.   Also I used pads over the top and men’s boxers I still have to wear boxers as women’s pants still rub and make me sore 

if hosp or drs won’t supply you with jelonet I bought mine from Amazon about £6.00 per pack size 20x 10  but later I used 10x10 

I wish you all the look in the world and hope this helps you and you are not on your own 

denise

Hi, yes I am 4 days away from my last treatment and I can relate. The right pain killer with adequate dosing is a must. I have also resorted to cold baths the past couple of days that provides temporary relief.

1. Hi there, I am 3 weeks post treatment and can really relate to what you are writing. Especially about the pain when you go to the loo, you need to wee but you know it is going to hurt. For me for the sitz bath was brilliant, it honestly makes a huge difference and they are cheap off Amazon. Cranberry juice drinks may help a bit too. And ask your Gp to prescribe some oral morphine. Also, try if possible to not wear any underwear at all, loose harem pants or long skirts. I couldn’t bear anything coming in contact with my nether regions, and walking was hard so I didn’t go out anyway at its worst. Try and stay in bed as much as you can. Puppy training pads are good to put on chairs/ bed to catch any escapes/ discharge from the open wounds . Grim as it is now, This does all pass though, and you will heal. Remember it means the treatment is working and it is killing that cancer. Stay strong , you have done the worst . 

Hi again,

I am trying to think of other coping strategies for you Hamfan.

For me some of the worst times we’re in the depths of the night when all you could focus on was the pain, and sleep at 2am seemed impossible. I found trying to distract my brain away from the pain helped. Sounds a bit wacky, but when having a wee, either singing ( or swearing) or trying to concentrate on my breathing, and not what was happening down below ( a bit like childbirth!). Remembering the burning sensation will pass. Trying to stay distracted during the day with books/puzzles/daytime tv. Anything to take the mind off the pain. Try to stay off your feet if you can as well. That seemed to aggravate things for me. 
Now I am trying to get moving again as much as possible . 2 weeks ago walking 100yds was a challenge, now I am back dog walking again, so you will get there. Good luck x

Good morning Hamfan21 many of us gone through treatment can really empathise with what you are going through and it sounds terrible but what you are going through is pretty much normal. Some are worse and some are lucky to get away with just taking normal over the counter pain killers. I took oral morphine every four hours plus the paracetamol and ibuprofen. I was worried I would Become addicted. They reassured me that it was perfectly safe taking all this in a controlled manner for a short time. If you need pain relief then take it! Sitz baths were a godsend and a bidet spray my husband attached on our shower attachment with an extra long hose so that it reached the loo. My doctor prescribed a cream used for vaginal itching which took the stinging away. I was allergic to anything with silver in it which was the flamazine I think. I think everyone finds their own way of coping and my advice would be is to take any pressure off yourself and rest as much as you can. Take any help you can get with cooking and cleaning etc and concentrate on you. I never tried the cold bath as someone mentioned but did use the bidet spray on cold and then warm. Antihistamine tablets helped me with the itching and I eventually used Vaseline. I had green pus oozing from the vagina which kept making the skin stick together which I had to keep prising apart which resulted in it bleeding but it was normal and not infected. It sounds terrible now and wasn’t pleasant but pain relief is so important and it’s not forever. From what I have been told it usually peaks at two weeks before you start to feel better but sometimes can go a little longer. There is light at the end of that tunnel and you are heading straight for it. Take care.

Thank you all so much, it truly is getting me down. I spent all morning on my bed on top of a pet pad with nothing on  my bottom half and wore some loose trousers, got commando with all my creams on. Its just getting me so down and miserable. 

I'm also feeling emotional about treatment finishing, I'm sure it's normal and I keep telling myself this but I'm entering limbo land. That anxious wait for scans. I'm not convinced the tumour will have gone.My paper work says curative treatment but the tumour was 7cm (I say was as I'm being positive  well, trying!) I know that the treatment works for months after.  Has anyone on here had a tumour of a similar size and had it eradicated? I'm all over at the moment. 

Xx

I couldn’t have written the same message! Looks like we are in the same boat. I am -4 days from finishing, been in bed all day. Bedridden for 3 days actually. It’s hard, it’s painful. I am taking cold baths every couple of hours to numb the pain and it helps. All I can think is « is it gone? Will this all be for something? » emotions have been so high lately. I hadn’t passed in a few days and yesterday while entering the hospital I was so nauseous, I immediately ran to a garbage and puked the 10 or so litres of water I drank the two days before. My body had to expel, from one end of the other. This was followed by a meltdown, seems the last three Fridays have been meltdown day. A little voice even said in my head the other night, I can’t do this anymore. And then the other voice ´whaaat are you saying’?? It’s hard, so very hard. My tumour was 5.7 cm. I went to the emergency Oct 14th with symptoms and had a biopsy. I started treatment December 6th. Mytomicin and 5 FU day 1 and day 29 along with 30 rounds of radiation M-F. 26/30 rads done and chemo is completed. I read you and think ; how can it actually get worse post treatment? I would also  like to know from others 1. Any cases where the treatment didn’t get rid of the tumour? 2. Are skin burns worse post treatment for everyone? Thx

Dear Hamfan21, some great advice here. Anyone that’s had this treatment can truly relate to what you’re going through right now. You’re exhausted, emotional, worried and in pain. Even though we are warmed that this will happen when it actually does it can be frightening and overwhelming. 

You’re doing all the right things, I’d reiterate that maybe you need to try alternative pain relief if the paracetamol and codeine are no longer coping. Most people find morphine helps. It’s only for a short time. Can really help with the pain of going to the loo. Especially that pre-emptive when you know you need to go and are expecting pain! It’s horrid. The morphine will help you relax. 

I found these cotton shorts style underwear from M&S wee a godsend (link below) i bought larger ones than I needed - I could put my creams on without them being rubbed off but also I could tuck cooling gel pads in there too which stayed in place  I found this helped numb the irritation and pain from radiation burns a lot  worth a try! 

Polymem dressings which are a gentle self adhesive foam also helped heal and protect those areas (from your GP or radiation team) I popped them along creases of my leg and even folded into my bottom They also helped keep gels and creams in place .

I totally share your moments of “why me” and “is this really going to work” sometimes it all felt just too much and like it was a nightmare i was trapped in and I couldn’t get out of. It felt surreal.  Please honestly don’t worry you will get out of this soon and feel better. You will just suddenly turn a corner  so keep positive! 

Thinking of you and sending a big hug, you’re nearly there now! 

xx (link to shorts below)

www.marksandspencer.com/.../clp60495113

Hey Hamfam - I'm glad I found your post in my search. I'm one week post radiotherapy. It's been quite a struggle, but really helpful to read others' experiences, and see in what ways my situation may be a little easier that some have. I agree with others' advice about staying on top of the pain, and knowing it's a temporary thing, so you've just got to do what works. I'd started easing off my medications, then had another awful day of suffering and remembered that really exhausted, hopeless, 'down' feeling returning - so took a whole array of medications for the various issues and got on top of it (and ate something more substantial) and it really helped. I'm also fearful that it wont have been successful, and found myself listening to some music on YouTube and thinking which would be good background music for a slide show at my funeral... which was not a concerning indication of my head-space! I think I should put up a post myself now! Take care and really hope that pain is sorted really quickly <3