Beginning 3rd week of treatment

Hi,

I really do feel for you, it’s awful isn’t it? 

Have your radiotherapy team or oncologist offered anything for your burns? I’m 10 months post treatment & quite lucky that although sore my skin didn’t begin to break down until the end of treatment but one of the girls from my radiotherapy team advised me pretty early on in my treatment to only wash with the QV cream they provided which is basically like a double base moisturising cream & to use it as a moisturiser also, then I was given flaminal cream when the burns began to become apparent, this was a cream specifically used for burns, I was offered morphine & codeine for any pain but know from experience that these constipate me so I avoided them & used ibuprofen & paracetamol (alternating) & a antihistamine for the itching that occurred internally! I also found salt baths to be a godsend, some days it felt like that was the only relief. I was advised to keep everything ‘down there’ well moisturised too.

In my experience every hospital seems to give differing advice but like you I also looked to others that’d been through this treatment for tips on getting through this as comfortably as possible. Don’t be afraid to tell your team how uncomfortable things are getting as they don’t want you to be in any more discomfort than necessary. I’m sure some others from this forum will also be along soon to offer more advice & ideas on getting through the next couple of weeks.

I hope you get some relief soon & that the rest of your treatment passes quickly.

Nicola x

Hi there,

Don’t be scared, you are going to get through this, you're already nearly half way through.

As this treatment accumulates you will need to keep adapting to cope with the side effects. You will find the best way for you by using a combination of advise/drugs from your medical professionals, advise from people that have been through it already and good old common sense.

Like you I had a 4cm tumour although I was staged 3b as I had spread to pelvic nodes. HAD being the important word here, my tumour has gone and I’m 10 months clear! Keep this in the forefront of your mind and remember whatever is happening to you on the outside, its probably worse on the inside as your tumour will be getting a real blasting.

You’ll hear from other people on here, everyone’s experience and advise will differ. As Nikki has said, we all react differently and advise/treatment differs between hospitals.

I will tell you how I coped. I had a severe skin reaction (this doesn’t mean you’ll have one) like you I noticed changes towards the end of week 2 and things slowly became worse as I continued through the treatment. What I mean by severe is that I lost a lot of skin between my bottom cheeks, my vulva and the tops of the my thighs. Surprisingly it wasn’t really painful. I would say I was very uncomfortable and I couldn’t walk or sit properly. I was offered a variety of oral drugs, but didn’t feel the need to take any and like Nikki, I didn’t want to risk becoming constipated.

What worked for me was morphine gel and Atruman dressings, all supplied by my hospital, Guys Cancer Centre, London. I’d squeeze the gel onto the dressings and stick them over my broken skin. The great thing about these dressings is that they are oil based so they stay in place but you can peel them off very easily. It was all a bit messy and of course I had to change them every time I went to the loo, but this is what I did every day during and post treatment. 

I didn’t bother with a Sitz bath, I tried it but found it too cumbersome. I’d just use a shower head to clean myself after every bowel movement. I also had a lot of Epsom salt baths which I found very soothing and these ensured the skin remained clean which is very important. Some patients are advised not to lie in water for too long however, my medical professionals didn't advise against this and I’d have a long bath every day.

The hospital also gave me a ‘Bony Parts’ cut out pressure cushion which I carried with my everywhere as I couldn’t sit propertly. Towards the end of treatment the only comfortable position was lying down flat or on my side, so I did spend a lot of time in bed.

If you feel you need more than you already have, just speak to your medical professionals, they won’t want you to suffer. Maybe mention some of things I’ve outlined to see if your hospital provides them.

You will find a way of managing your side effects and before you know it you’ll be in your final week, then the daily trips to hospital will finish and you’ll start your recovery. I am 10 months on and the treatment really is a distant memory now. 

This forum is fantastic for advise. As you know anal cancer is rare so this really is the only place you’ll connect with other anal cancer patients who really understand what you're going through. Macmillan also have a phone line you can call for advise and you can also email an anal cancer surgeon directly by using the ‘Ask an Expert’ feature at the top of this page.

Keep posting and asking for advise, there will always be someone who will get back to you.

All the best with your treatment. 

Sarah x

Sorry you are feeling so sore. Take comfort in the fact that we have all been there & have come through it! Sarah’s advice is sound. I  also suffered from severe radiation burns, losing the skin from back to front. Even my groins were raw. I spent ages sitting in my portable bidet, which gave me relief. However I did end up in hospital as I couldn’t go to the toilet because of the burns. They were excellent, and I saw the skin specialist resulting in lots of creams etc. I spent most of the time going ‘commando’ and sat in the garden when the weather was good & enjoyed the fresh air getting to my burnt bits! 

But - 10 months on, and feeling good. I am comfortable in that area, and use Waitrose baby bottom butter if I get a bit sore. 

Hang on in there. You will come through it. It is horrid, but it will pass. You have our support. We are a very special little group!

I did a blog about my experiences, rather naughty, but says it as it is. blogfromuranus.blogspot.co.uk     It might give you a smile! 

Very best wishes, 

Pam

Dear Pam, so pleased to read your positive posts offering advice to those recently diagnosed and going through treatment.  Will try to keep this short, cos I tend to waffle!  First came across this site and started posting late last year.  I was curious about McMillan and their help since I slipped through the net when diagnosed December 2013 - probably ecause that my treatment was not at the hospital where I was diagnosed, but at another 50 miles away and involved lengthy daily journeys!  But my problems seemed trivial compared to your travel to the mainland and your existing physical problems.  So happy to read your positive posts and advice to others now - at the time you seemed so despondent about the outcome/future.  And now?  My heart is uplifted.  Here's to many more happy years.  Well done!  Dare I say "told you so!". So pleased. Mxx

Dear M,

Thanks for your lovely words. I do feel for those who are going through it, it does seem like a past nightmare now. 

I feel well & have had 9 clear months. I am now waiting for biopsy histology reports due to my Consultant here seeing something at my last check up. We are all hoping it is scar tissue, so fingers ( and legs!) crossed. 

Keep well!

Pam xx

Had a similar hiccup after 6 months.  A gynae oncologist poserd the question about scarring interanally or new site?  Was beside myself with worry!  Was internal scarring! Later turned out to be ''woody lymphoedema!' . It can occur for up to 4 years after radio treatment - didn't realise this!  Have lumpy groins and a larger left buttock!  If I was younger would think that I was in vogue with the Kardashian!!   Hope and best wishes  for your investigations!  Love Mxx

Thank you Pam for your words of support.  I look forward to being past this treatment as yourself and hope I can feel good again also.  I will check out your blog.

Thank you for your reply Sarah.  Today my biggest problem has been upset stomach and headache.  I spent the whole day dozing on and off in recliner other than having to go to my radiation appointment and then clinic to get blood drawn.  The radiology center has not offered me any creams but suggested I use Aquaphor.  I had been using it for 2-3 days but then wasn't sure if it might feel better to just clean the area and let it air dry without anything.  It feels a bit better (probably because there was no treatment for 3 days because of Easter).  But, now I'm back on radiation every day this week so I'm sure it will get worse quickly.

I didn't get a sitz bath but had this big low plastic tub I plan to set up in my shower for when I'm ready to try to take a "soak".  If it doesn't work out I'll get a sitz bath.  I only have a shower but at least it's got a long shower head I can't take down to clean off quickly if needed.

I appreciate your advice Sarah.

Hi Nicole,

No one from radiology or cancer doctor's have given me any special creams.  The radiologist suggested Aquaphor so far.  Maybe as I get worse they will.  Sometimes I feel like I'm dealing with all of this on my own and have to figure out what works for me.  When I ask if any of what I'm experiencing is normal they say "everyone is different".

I do take a pain pill once maybe twice a day and haven't been having trouble with constipation since the side effect of radiation is taking care of that.  Today I needed to take an Imodium AD to stop the runs so I could make my radiation appointment.

I plan to try a Epsom salt bath soon.  I do not have a tub but found a large, low tub I can set on a stool on floor of my shower that might work.  If not, I'll look into getting a sitz bath.

Thank you for your reply.  I appreciate your info.  I'm glad you are doing well and I look forward to being past this treatment.

Donna

omg....just another thing I have to worry about possibly having!