Pelvic Radiotherapy

Hello SarahLoo

A warm welcome to the forum, although I am really sorry to hear you are suffering, you really are at the sharp end of treatment right now.  I finished treatment three years ago, and can remember the side effects like it happened yesterday - I too had very bad side effects and it is only a very few that sail through this treatment unscathed, what you are going through is (I hate to say) 'normal' for this treatment.  The good news is you are very nearly through it, the side effects usually peak in the two weeks after treatment has ended and recovery can be very rapid after then.  

Are your treating team keeping on top of your pain relief?  I took everything that was on offer, morphine, slow-release morphine and co-codamol and had Flaminal Forte gel with polymem dressing for my sores.  If you do take opioids just remember to take Laxido (a stool softener) alongside, opioids slow everything down and the last thing you want is constipation.  This really is important once you stop treatment, I had diarrhoea whilst on the course but that stopped when completed and I became constipated instead.

We are all here to support you should you need it, and you can talk about anything on here, nothing is off-limits.

Very gentle hug

Irene xx

Thank you Irene. It’s nice to know there is light at end of the tunnel!
I am on paracetamol and morphine too. As well as the creams I mentioned. I just can’t seem to get on top of this pain and itching. I’ve never had anything like it. The skin is so broken and dry. 

I will definitely be on top of the laxatives as constipation now would be horrendous! 

Thanks again 

hugs back 

Sarah x 

Sarah, what is important when  taking morphine is that you take it regularly so you don't get break-through pain - no painkiller, not even opioids totally eliminate the pain but they do make it more bearable.  I would suggest talking to your team, the slow release morphine capsules in combination with the Oramorph really helped me, I didn't need it for long and in fact stopped three weeks after treatment ended, I wasn't warned about the constipation until I already had it!  So I make a point of telling everyone to avoid it.  I was lucky in that I didn't have itching, quite a few others have and found that anti histamines helped.

There is a light at the end of the tunnel and it is getting closer day by day!

Irene xx

Hi SarahLoo

Welcome to the forum. Like Irene has said nothing is off limits and we are all here for you. I'm just over 4 months post now. I remember the burns, I had flaminal hydro and flaminal forte for mine. I also found getting as much air to the area when possible helped. You are so close to the finish keep counting those days down. Sending hugs. Xx

Hi SarahLoo , another warm welcome from me to the MacMillan Online Community. As Irene has said unfortunately the situation that you find yourself in isn’t unusual at this stage of your treatment. I was lucky in the fact that my radiotherapy was very direct & I didn’t get the burns to my groin, they mainly affected my undercarriage back to front! I used QV cream to begin with then Flaminal then once treatment was done I was given Flamazine. I would slather the creams on at every opportunity. If you’re not getting much relief from the creams then it’s time to ask your team for more adequate pain relief if you haven’t already done so. Irene has also mentioned the importance of having some stool softeners on hand if your Dr’s up your pain meds, especially the opioids as they slow everything down including your bowel & constipation can become a real issue which is not what you need right now. 

I really hope you find some relief soon, we’re here to help support you however we can.

Nicola 

Hi SarahLoo,

Welcome to the forum although I’m sorry that you have this diagnosis and are having to go through the treatment. 
Well done on getting to week 5. It definitely gets tough at this point when the side effects really start to kick in. I’m really sorry that you are having so much pain, and it really sounds like you need an increase in your pain meds.  I can see that the others have given very sound advice and I hope that you’ve been able to tell your team how much you are struggling. 

I remember well how hard this part is and feel for you. Although they warn you nothing quite prepares for the reality. Try to keep ahead of the pain with the morphine and get the creams reviewed. 

The end is in sight and this treatment really does work. 

Big hugs to you xx

Thanks Bungle1. Yes, I’m going commando as often as possible! That does seem to help. Thanks for advice and support. Just counting down the days now! 
Thanks again 

Sarah x 

Hi SarahLoo 

You are at the stage where your skin is breaking down and staring to try to heal whilst still having the radiotherapy..

I'm 6 weeks post treatment now and almost back to normal (ish).

how i coped with the skin break down was..

Invest in a shewe..that way your urine is not touching all the broken skin..I found it easier to go for a wee when my bladder was full so drank lots of barley water or cranberry and water..

Go commando as much as possible..

Slap on the cream whenever..

I had shallow baths twice a day and used my sitz bath as many times as I needed.. sometimes even to open my bowel..

The day my treatment finished I started using flamazine or sudacreme.. that gave me more relief but you can't use these until radiotherapy finished..

I kept onto of the oramorph for 2 weeks afterwards.. but nothing needed now..

I really wish you all the best on your journey..we are all routing for you

X

Thanks for this advice, sounds very sensible. 
I m having sitz baths as and when, they help with the Weeing as well. She wee sounds like a good idea. I’ll get onto Amazon! 
this is definitely the hardest part so far

thanks for this advice 

Sarah 

So sorry to hear you're having such a rough time. I finished my pelvic radiotherapy at the end of October.  What worked best for me was sitting in warm, (not hot) salt baths, changing my underwear pretty much every time I went to the loo ( which was often) and using those cold packs they give women after they give birth. Hang on in there - it's hard but worth it, I think. Look after yourself.