Finished Treatment - Radiation Cystitis

Hello Staceyede

Welcome to the forum, I am so pleased you found us and are posting on behalf of your Mum, although I am sorry that she had the need to go through this, all of us on here have had or are going through this treatment and completely understand.

Your Mum really is at the sharp end of treatment now when the side effects peak - usually about 10 - 14 days after treatment ends, and things start to get better.  However, she may well need additional treatment if she has a urine infection, she should still be in close contact with the team who treated her and I would urge her to give them a ring.  The general side effects can vary but there is no doubt that they are brutal, when going through it you do wonder if things are ever going to improve but then, day-by-day, everything starts to heal.  Everything you describe sounds normal, but the pain passing urine should be checked.  If in doubt about anything at all, flag it up to the team.

If you are new to the forum perhaps you won't have heard of the Sitz bath (available on Amazon); it is a plastic portable bidet that sits over the loo seat.  Filled with lukewarm water, it gives great relief to the nether regions, and can be used for passing urine and having a bowel movement too, so much less painful under water.  It is plastic and easily emptied and disinfected.

She should also make the team aware if she needs more pain relief; there are very strong drugs that can be prescribed to help her through this period.  She just needs to make sure that she takes Laxido (a stool softener, not a laxative) as these drugs can cause constipation which is to be avoided at all costs when everything is so tender.

And of course, plenty of rest; her body is using a tremendous amount of energy to recover from this treatment and the fatigue can be overwhelming in the early days too.

Please come back if there is anything else we can help with, and I wish your Mum the speediest of recoveries. 

Irene xx

Hi Staceyde,

Big kudos to your mum for getting through the course, it's a real test of endurance. Now she's in the crucible, the first couple of weeks of recovery, which tend to be really tough.

Painful bathroom trips of all sorts, bleeding and green gunk are all normal, but that doesn't mean that her team shouldn't be alerted about ANY worries the two of you have. You lot seem to have a really good thing there with your NHS, at least most of the time, so take advantage of it and ask them for different creams or pain meds if what she's taking isn't doing anything.

Nothing makes it not hurt. But there should be medications to help.

I'm happy for her that she's got you there to help.

Suz

Thanks Suz for your advice.

It does look like she has a urine infection, we have antibiotics for her now.

I think we’re just shocked at how bad the recovery is, we wasn’t really mad aware about this stage and I think mum was expecting to finish treatment and feel better but things seem to of got worse. But I guess they have to before they get better.

My mum is a wound nurse and I am training to be a nurse but it is still a very scary time as it’s all still new to us.

Stacey x

Stacey

Hopefully her pain (on urinating at least) will ease off a bit now that she is on antibiotics.  I can totally understand you both being shocked, the days after treatment ends can be really grim and it will be a great help that you are there for her.  Both my daughters helped me enormously during this stage and I couldn't have done without them, I needed help cleaning and applying dressings as I had a sacral sore the team were concerned about.  It is all distant memory now, it is wonderful how the body recovers (and the mind) from this period.

Irene xx

I have had radiotherapy cystitus for many years after radio for cervical cancer ,a year ago I was started on bladder infusions and hiprex it is working amazing well for me ,