Shared experiences- coming to end of treatment

I was inextreme pain.sorry but that's how it was couldn't sit down had a blo up cushion which the district nurse arranged the cream flamagel helped had to reapply all the ti.e weei g burnt I had to use a sitz bath but didn't have any side effects it lasted 3 weeks then I started to feel better I wasn't tired or anything g else other than the burning  which was bad enough 

Hi - I am week one after radio chemo has finished - it’s not great as the side effects are still building up - get yourself a sitz bath -  request oramorph asap - I was told to take 5ml 2 hourly - then given a small bottle - be pushy and ask for a big bottle or 4-5 small ones as it runs out quickly x creams / gels help and dressings you pop on yourself x ask loads of questions as I thought the leaflets would help and they were not great x pen and notepad needed for everything xxx 

I am told I should start to feel a turning point sometime next week - but who knows x  

Pain management skills will develop very quickly as you find out your level!

I have been shocked at how much is not mentioned - discomfort should be banned as a word as nothing is that easy xxx replacement word is hurts a lot x 

keep sharing on here and keep looking for help you want x 

In the nicest way use your MacMillan nurses and remember they have seen it all - experienced more than we could imagine x 

I am having the worst day so far so not great advert but hourly alarm for oramorph is helping a  bit x constipation meds Are twice a day - I go every 2 days now x possibly x 

everything changes just keep calling and sharing - don’t suffer in silence and get On here for anything x 

angie x 

And choose a good pharmacy to use - luckily I have two friends who work in two pharmacies x priceless as what I have been given Isn’t often used. X Angie x 

Weridly… my worst week so far was last week (week 4.5) I couldn’t walk, I was in agony every hour of the day with radiation cystitis.  I was crying in pain, sat on the toilet for ages at a time. I’ve got very pain relief drug going, you name it, they gave me it. 
i had OxyCodone, oramorph, codiene, morphine gel, medi honey cream, paracetamol and ibuprofen oh and naproxen! NOTHING WORKED - not all at the same time obviously 

they gave me lorazepam and then Zopiclone to help with sleep and anxiety!! 

guess what I found to help in the end… Co-codamol and Intiligel 

crazy!!! 

things have been more bare able this week, i can’t imagine it getting any worse than last week was. I just wanted someone to put me out my misery. I think I slept about 8 hours in 7 days! I was crying, tired and just exhausted with the whole thing. Everything made me sick, even the anti sickness tablets, I’m now on the 3rd brand but haven’t had to use them yet.

the nausea and constipation along side just puts the icing on the cake really.

So yeah I’m hoping it really can’t get any worse for me right now, my skin is getting a little better this week actually and now I have a cream regime going on and also I have found the right pain relief to keep things calm and at any, enough for me to function a little every day.

Thank you all for being here to chat to, I find your advice comforting and helpful xx

Angie, you have really hit the nail on the head about banning the word 'discomfort'.  Years ago when I went to childbirth classes we were told these contractions may give you some 'discomfort'.  When giving birth I thought I was passing a football out of my back passage and when I collected my thoughts later, I felt really incensed that a more accurate picture wasn't given.  Of course I got over it and went on to have another baby but I still remember the shock of the first birth - and the midwife beaming and saying you did it without any pain relief!  That certainly wasn't by choice.  x

The last week (and a half) of treatment and first two weeks of recovery were the worst for me. If I let things get too hard, there was that agony, but soft poo also felt like lava. My skin from front to back was red and raw. I didn't sleep more than a couple of hours at a stretch. Even the opiods stopped helping much. 

It was really hard. 

I'm glad I did it, and am glad that it's not an option to re-do it. Cuz I wouldn't.

Hugs

Suz

Hi AsLu24 , 

I managed ok during treatment but I only had 23 treatments opposed to the standard 28, if I’d had to have a further 5 treatments the story may have been quite different. I did suffer radiation cystitis though from week 2 of treatment so I can sympathise with you on that one, I drank buckets full of sugar free cranberry juice & lots & lots of water but it was so uncomfortable. The 11 days after my last treatment were the worst for me, for those 11 days i moved from bed to bath to sofa back to bath & bed again, bowel movements were painful & I took Movicol or Laxido sometimes twice daily to keep everything soft enough to pass with as little effort as possible but even that hurt. I had to manage on alternating paracetamol & ibuprofen 2 hourly as any opiate based pain relief made the constipation unbearable I also took lansoprazole to protect my stomach as the ibuprofen was the highest dose available. The fatigue was also at it’s height so I slept A LOT during those 11 days… Having said all of that once I turned the corner I healed amazingly quickly, bowel movements were still a bit painful for a while but I took the stool softeners for almost 3 years post treatment & now 6 years on from my last treatment I’m doing well, I have a bit of anal stenosis but that’s improved a bit over the last couple of years, my skin gets a little irritated from time to time & I have mild IBS type symptoms sometimes but on the whole life is good. 

You’re very nearly there now & will soon be able to concentrate on your recovery, sending you lots of healing thoughts.

Nicola 

I loved my local pharmacist who really was helpful when I used to ring her asking what she would recommend for skin ailments 

Julie

i was fine with the chemo, but them burns !!! i used a mirror everyday to see how they were doing..the day i looked and thought i wasn't quite as red in some parts was the day i could see light at the end of s tunnel, that felt great x

Hi svh when I was going through treatment and post treatment I too used a mirror 10x magnifying with a light. My eyesight isn’t that great with an ordinary mirror. They are great for detecting any changes and could see things under normal circumstances would not be visible! I am now well versed on my anatomy than I have ever been and would never have imagined myself doing this before! Post treatment months down the line I did develop a pea size lump just at the entrance of the anus which was really uncomfortable and especially during bowel movements it would flare up and glad I could see it in my mirror and noticed it was getting bigger. I went back to my oncologist who said Julie I don’t know what it is but almost convinced it isn’t cancer and she took a photo of it (no not for the top shelf magazines) for the surgeon to look at. I explained I saw it through my magnifying mirror which brought a smile from her and the attending nurse. It turned out to be an epithelium lump caused by over healing of scar tissue which I had removed so all good. We have to be aware of any changes and that it is good to use that mirror to do it.

Julie