So pleased to have found this forum

Any advice on how to lessen the pain or help with the healing of open radiation burns would be gratefully received. 

Hi StellsD , 

Firstly welcome to the Macmillan online community although I’m sorry you’ve had the need to find us. Secondly congratulations on completing your treatment, it’s not easy but you’re at the point now where things should start improving really soon & certainly in my case once that healing began it happened really quickly although the fatigue continued for some time & generally came in waves that just gradually got less & less. Like you I couldn’t take any opiate based pain relief throughout & I coped with alternating paracetamol & ibuprofen 2 hourly too. The couple of weeks following my last radiotherapy session I spent going between bath, bed & sofa, I was often my most comfortable in an Epsom salt bath. I was also very lucky that I didn’t suffer any nausea except a couple of days after the mitomycin infusion at the beginning of my treatment. 

You’re very wise to protect yourself regarding your lack of immunity, especially this time of year, it can take a while for our immune systems to recover. 

I know what you mean about feeling as though you’ve been left a bit high & dry once your treatment has finished, you’re used to that daily contact with your treating team & then all of a sudden nothing! I’m sure they reassured you at that last appointment though that they’re only a phone call away.

The Maggies Centres are a great source of support & information aren’t they? I was lucky enough that there was a Maggies attached to my treating hospital that offered everything from coffee mornings, financial advice & counselling to massage & beauty therapy, a really amazing space.

I’m so pleased that you’ve found the forum so helpful, hopefully others will come along soon to share their experiences on coping with their radiation burns etc. Sending lots of healing thoughts your way. 

Nicola 

Hello StellsD

Welcome to the forum, although I am sorry you have to find yourself here.  And you don't sound negative in the least, you are at the sharp end of the treatment and you can share exactly how you feel!  And you have certainly come to the right place; all of us have been through or are going through what you are going through right now.  I had very bad weeping sores from front to back and in the early days I had morphine syrup together with slow release morphine tablets to ease the pain, quite frankly I couldn't have done without that.  What I didn't know at the time is that they cause constipation, as did the co codamol tablets I was prescribed.  So if you do need some more pain relief please do take it, just be well prepared and take precautions, Movicol, or Laxido alongside from the very beginning.  I used the morphine for a month after treatment ended and then stopped as I couldn't balance the side effects, but was in slightly less pain by then. 

I'm not sure which gel you have been given for your sores.  There is Flamigel which is for superficial wounds and Flaminal Forte Alginate Gel which is normally prescribed for deeper wounds and radiation burns, I hope you have the second one, if not I would ask the team treating you to prescribe it as it is very effective (eventually).  I was given Polymem non-adhesive foam dressings to use alongside which I cut to size, covered liberally with the gel and put directly onto the sores.  I kept them in place with the largest size of Tena pants (to avoid any sort of rubbing) I had to wear at the time, as well as wedging the dressings between my buttocks so my back passage always had continuous Flaminal.  The Sitz bath I used for everything; having a bowel movement under lukewarm water was much less painful as was urinating, the bath is so easily emptied and disinfected.  The other item I used continuously was a cheap inflatable ring cushion from Boots, I carried it with me as sitting on hard seats and car journeys were painful.

At your stage I was fit for bed a large part of the day and not much else, I slept non-stop but of course this is the body healing after a very intensive course of treatment.  So if you feel the need, be kind to yourself and rest.  I am pleased you are near to a Maggie's centre, I visited there in the early days and they were so kind and helpful.

I hope some of this helps, please do come back and let us know how you are.

Irene xx

Hi Stells, 

Congrats on getting through the treatment, now you're in the crucible. It'll take a week or three to start noticing improvement, but hang in there, it will come!

You guys have different meds available to you in the UK, so I won't be much help there, but I'm glad to see you're getting a Sitz bath. If you can get a bidet attachment to your commode, that will also be a huge relief. I have spritz bottles in each bathroom that don't have bidets so even 10 months out I never have to touch to clean. 

I wouldn't have made it through without opiates, so am in awe of those of you who power through it. But trying to balance pain relief with avoiding constipation is a tricky dance. 

You do NOT sound negative. This is so hard, I don't think anyone who hasn't experience can really get how tough it is. This is the perfect place to sound off- we get you.

My immune system is still iffy this far out, so I mask up whenever I'm going to be in contact with a lot of people. It's just common sense.

Good luck and keep us posted!

Hugs

Suz

Hi Nicola

Thanks so much for reaching out and telling me about your very similar experiences. Especially as you're farther along and your advice is so positive.  It has helped a lot. 

Hi Irene

Huge thanks for your very detailed and helpful reply.

Through my Macmillan Cancer Navigator Service nurse I managed to get an appointment and took along a screenshot of your message. As a result I've been given Flaminal Hydro (not quite the same as the Forte but better than the Flamigel) I think. More importantly I've been given the Polymen dressing. I can't thank you enough! The pain level has become so much more manageable.

Maybe it's a coincidence, but one day on, and I'm feeling I've turned a corner and beginning to be able to think straight again. 

Thanks again.

Stells

Hi Suz

Thanks so much for responding to my post. Really appreciated your encouraging message. 

Good luck and thanks again. 

Stells

I am absolutely delighted that your team have prescribed the Polymem dressings for you as well as a stronger cream, when I first replied to you I had a quick look online and was absolutely taken aback by the cost if you bought the items yourself.  I was very fortunate after my treatment ended I still saw the team at the Royal Marsden every week so they could check on my sores, and if something didn't work quickly, particularly for the sacral sore that they were concerned about, they tried something else.  I am very aware that not everyone has the same experience.  Thank you so much for letting me know.  Good healing! x