Treatment completed

Hi Emz what a milestone!

Well done - I am three weeks ahead and would say keep asking for pain relief and be graphic as no one understands unless you tell them -  has your specialist nurse had a look at your skin? Make them your best friend x Also do not wait for regular check ins - it’s worrying and everyone should be happy to help.

I settled with a barrier cream to protect the broken skin when weeing and pooh as both can burn. Trial and error can hurt but worth doing so you can see what suits you. 

I spoke with a cancer care line lady who suggested slow release morphine and that made such a difference!  Game changer -  and ask for delivery from a pharmacy to provide what you need as our ma we’re a bit hit anS miss with a few days wait.

Forward planning and a bit more knowledge of what to expect would have helped me be more in control - that’s why I am going on …. Hope this helps x 

Keep strong - I can’t advise on salt baths as not used them x and keeping still  gives a bit of rest if you sleep daytime you will still sleep nighttime x 

Shout anytime on here as every journey is so different x 

Angie x

Hi Emma, well done in getting through the treatment. I am not sure if you had a bell in your hospital, but we have one to signify the end of the course of treatment, my mum rang that bell so hard haha… I hope you did too!

My mum is one week post treatment end, and it has been a tough week. The electric sitz bath has been the best thing for her, but the last couple of days she has struggled to use the epsom salts from the pain with the broken skin so just used cool water to calm things.

Like Angie says, don’t be afraid to ask for the slow release morphine if the pain increases, my mum was shaking with pain at the start of the week, but she was prescribed Zomorph taken every 12 hours alongside Oromorph taken every 4 hours which has got a hold of things much better. She has also been able to sleep relatively well with this, only having to get up a couple of times in the night. My mum does seem to be different to others in the forum with a sensitivity to most food causing diarrhoea so constipation is not a thing for her, but she did get a sicky feeling in her throat which we thought might be heartburn, gaviscone tablets seemed to help!

All the best xx

Emma, you really are at the sharp end of the treatment now but the blessing is you are at home and know that is it done - now just be very kind to yourself and sleep as much as you want to (keeping still!) and before you know it the pain lessens and new pink skin is growing.  Your body is recovering, maybe not to what it was before but recovering none-the-less.

Well done you!

Irene xxx

Hi Emma,

I’ve been wondering how you were getting on, so pleased you are all done now, I hope your recover happens quickly.

I’m nearly 2 weeks post treatment and I’m able to do things now, I did some housework yesterday and I’ve been to the supermarket and out to lunch. I still have a couple of sore areas but on the whole it’s healing remarkably quickly, I hope it will be the same for you.

I’m still going to the loo into water and having a daily Epsom salt bath which I think helps with the healing process and I’m still applying the creams. 

Take care you and anyone else in the recover process. Xxx

Oh Coco70 I feel like pulling my hair out the past 24 hours im so sore 

did you still take epsom salt baths when the skin was red raw , I have took salt baths for weeks but scared now as im so raw 

glad to hear things are on the up for you

Emma x

This next couple of weeks will be really hard, I still remember it so well.  It's a case of just powering through and doing whatever you can to feel as comfortable as possible.  Lots of air down below, lots of gel/cream (whatever they're given you).  I used a bidet a couple of times a day to clean myself when I felt really gross and air dried rather than using a towel to protect my skin.  Big hugs Emma, this part is really horrid xx

Well done for completing your treatment and now entering the critical stage of the healing. The radiation is still doing its work on eradication of the cancers. Like some on here say, it can be really tough! I have read some can have a couple of weeks experiencing some soreness and heal fairly rapidly. Sorry to say I wasn’t one of them. The one good thing was not having the daily grind of having to travel to and from hospital every day and that I could just concentrate on rest and trying to ease the discomfort with my morphine, paracetamol and ibuprofen routine. I tried to be brave early on after a week of morphine I said I don’t need this, it’s addictive and I can manage with over the counter drugs. Well I was in for a shock and after two days of no morphine I went running back for it. I also took movicol to help ease those sometimes excruciating bowel movements and yes they were pretty painful I would get palpitations at the thought of what was to come every time I sat on the toilet. In the end I would sit on it and sing at the top of my voice in my head rather than have my neighbours go ringing the police thinking my husband was strangling me or something. Once it passed and I was still here I would feel happy that that one was over! This went on for four weeks and after reading on here that some were getting back to normal ish after two weeks I did wonder why me! I spoke to my specialist nurse and said why is it I’m still struggling after four weeks and she said we are all different. I became lactose intolerant and they put me on a FODMAP diet which really did help with reducing the constant bowel movements which I think was one of the reasons my bowels were so inflamed. Things did then start to change and when I started going out for short walks I suffered tenemus feeling like my bowels were constantly wanting to open. Our pelvic floor takes a battering and it just takes time. I routinely did pelvic floor stretches laying down on the floor stretching which is really good for keeping the area flexible. Also my external skin really didn’t suffer as I used a really good product but did have a lot of internal swelling. I also started using the dilators around the twelve week period using a YES lubricant and I purchased some silicone dilators rather than using the bright pink hard plastic ones the NHS provide. It took time but eventually was not painful but did have some muscle tightening around the vagina. I used an oil called tamanu oil with a carrier oil for around the anus for healing but never used any dilators there. Pain was starting to ease when opening the bowels around the 4/6 month period which was a blessing. I still soaked in warm water prior to using dilators for relaxation of skin. I did have to have a skin tag removed due to scarring from radiation which was just a lump which set my progress back. After I had a smear at my hospital by the special gynaecologist at Addenbrookes he said that he could not believe how well my internal skin felt with hardly any scarring. Therefore looking after your skin really helps. l hope my experience and how I managed it helps you and other early post treatment guys. Good luck and I’m three years completely pain free with I would say one problem and that’s some food intolerance and I have to make sure I follow a good healthy diet. I can’t eat chocolate, citrus fruits apart from the odd satsuma and my beloved seeds I used to mix with my oats. I can’t eat pastry cakes as they give me constipation but still learning how to control my diet. 

Julie

Hi Emma,

Yes I still continued with the salt baths even when my skin was raw and it was uncomfortable but I figured it was helping, your skin might be worse than mine was though. I wish you a speedy recovery. Xxx

Julie, what a wonderful detailed and positive reply xxx PS I need to take some hints!

Hello

I am just starting week 2 post treatment and my cystitis is only just starting to ease off. I’ve had it since about week 3/4 of treatment so a while now.

my skin is also starting to heal very quickly especially my groin areas which is actually formed new skin now. I have been using medihoney which was given to me by the hospital. I used morphine gel too which helped, my only real issue is the itchy anus which mainly happens at night. I could scratch my skin off it drives me insane! 

I had very little sleep over the last few weeks but I eventually got my GP to give my diazepam. I know it can be addictive but it’s the only thing that’s allowed me to sleep!! 
Don’t be afraid to ask for what you need! 
I am also taking co codamol and naproxen through the day to keep things comfortable.