Creams ...

Hi Sapphiesmum I have read back through this forum, spoken to my Nurses and read some literature reviews! Using Flamigel RT from two days before seems to be the one way of avoiding "moist desquamation". I start on the 16th and am quite simply terrified! I have also bought dermasilk knickers and big boxers, a hand fan, puppy cooling pad and a shewee to avoid burning the skin more. I have had a loop colostomy so at least I wont have to go to the loo past the tumour!!! Will certainly be following this thread for tips!!! My tumour is 4cm so expecting quite the burn, its pushing down into my perineum...eek....

I totally resonate with your terror hun'.. to add insult to injury, I developed fibromyalgia around 18 years ago, and whilst I have over the last 10 years or so managed it really well, to the point that most people would never know I had it, it has left a legacy of being hyper sensitive to pain... (ie if I stub my toe, you'd think a truck had run over my foot! I had to have a tooth out this week, and you'd think I was having a root canal without anesthic!! So I am now a complete WUSS!) ...

As I said in my post, I am yet to have the pleasure of meeting my team in Bristol (they are still waiting for the results of my recent scans) so I just need to know what to ask for when I do see them.. so that's helpful. thank you!

Hi Sapphiesmum,

Good to know you are getting prepared for treatment. It’s a stressful time. 
When I started treatment in October 24 I had zero information about creams and didn’t use any in preparation and while in treatment only used those prescribed or advised such as flamigelRT towards the end of treatment.

 I know from this forum that many have had great results with StrataXRT and I know will advise. I never had dressings but found Epsom salt baths really helped. 

In terms of what to wear, I just wore simple loose clothing to radiotherapy. No zips or metal. I didn’t have to wear a gown and just had to pull the bottom half down to hip level and they put a paper sheet over me. 
I do know that some forum members had to wear a gown so I think different areas have different protocols. 
Loose natural fibres were the most comfortable, particularly as the treatment progressed.

Wishing you all the very best for the start of treatment and I’m sure that you’ll get loads of helpful information on creams from the group.

xxx

Oh have you spoken to Mrs Vanilla ? She was treated at Bristol!

I have heard about all pain meds being on offer including oramorph! Also, mepilex dressings and polymem are used. Flaminal Forte is a next level cream. If I find out more next week will let you know xx

OOOH, NO I haven't spoke to her, but we should.. hopefully she'll see this and reach out (or I could!!) 

Luckily I already have a good supply of Oramorph.. I had a nightmare after my last biopsy became infected, and I have the best GP in the world, who gave me THREE bottles to get me through! (I only used 2.. so now have one spare!) so I know if I need more, I'll get it! Only problem with that is it can trigger constipation, and none of us want that malarkey! ;) 

So, yes please, keep in  touch with any feedback and useful tips! And good luck with your treatment hun' x

Hi Sapphiesmum Willow26 PEB24 

To chip in with the creams conversation, I didn't moisturise at all beforehand; I didn't come to this forum until my treatment had started and by then the radiographers had given me Flamigel which I used all the time. Once I was finished I also used Sudocrem where I had sore places. I didn't use any dressings.

What I did want to add was that I had a really sore bottom before I started treatment and within a few sessions of radiotherapy it really eased off. I just realised one day it didn't hurt any more. It was amazing and I didn't expect it to start acting so quickly so hopefully you will find the same. 

And yes, I was treated at Bristol, it was absolutely fine, I am sure you will get on well there too. xxxx

Hi

I was also treated at Bristol. They gave me some Aveeno moisturiser to use before and during treatment. 

After the treatment finished, I used Sudocrem. 

I had to wear a gown for treatments- just kept the same one throughout. I just wore comfy clothes to the sessions- skirts or joggers. 

I’m very happy for you to contact me if you need more info. 

Best Wishes Xx

thank ou! How long ago did you undergo treatment there?

I have actually never had "symptoms" per se... no pain, very little bleeding at at.. just a bit of "spotting" now and then...and a bit of an itch now and then....I just had a few "bumps" and a little (what I describe as an ulcer) near my anus.. which for years I just thought of as haemorrhoids, and no big deal... until last summer when I realised the "ulcer " had got bigger.. that took me to my GP.. who was an absolute STAR., and has been ever since... so the treatment is going to be (for me) far worse than the disease...  so every one is different aren't they?

How did you find the team at Bristol? I'm yet to meet them... (I live in Taunton, and Musgrove have been lovely) 

 My treatment was in 2023. I’m in Taunton too- happy to meet up if you’d like to talk. Xx