Hi All, near the near of week 4 and I'm starting to struggle a little with the pain from radiation.
Skin hasn't broke yet, but probably close in parts and very pink now. Every trip to toilet is painful, both ends. The urination is like razor blades - nurse took a sample to check if infection but I'm assuming it's probably just inflammation from radiation. I also have noticed a spot near vagina - it's like a zit you'd see on face, has anyone else had this?
And the bowel movements very sore too. It takes me back to before Christmas when I had similar pain. I forgot how soul destroying it can be at times (normally in morning for me) to spend what feels like ages gently cleaning area, to get to point thinking I can leave and then feel another bowel movement come on - is that just me?
I need to start upping my pain relief I think, I'm avoiding morphine for as long as possible more so as I have my son with me at moment. The doctor keeps saying to use instagel, a local anesthetic to use on a bowel movement, but the skin nurse said not to so i am a little confused! Did anyone else use this?
Ahh just feel like I've got a long way to go and a little down today. Spoke to oncologists assistant (for some reason I hardly ever get to see my oncologist!) yesterday and he's asking my oncologist if the chemo can be reduced due to the bad side effects I had. I hope so as I am dreading this again next week. I am also very tired a lot, my son will be going to his dads next week so I'm looking forward to that as then I'll be able to sleep more / rest, selfishly feel like I need it at moment.
At least the sun's started to shine...roll on the weekend xx
Ah, you are on the home stretch now, hang on in there! I know the last 10 days can be very taxing to say the least, I am pleased you will have a break and be able to rest. You aren't being selfish at all, quite honestly I don't know how Mums juggle this treatment with looking after children, the way I felt I couldn't have looked after a budgie. The fatigue can be absolutely overwhelming, your body is working very hard to repair itself after the radiotherapy and it is absolutely draining on your physical wellbeing. And I am sorry that you had such bad side effects from the chemo, there are some people on here who also had to stop due to side effects but it didn't adversely affect the outcome.
I had a small raised spot near my anus but that disappeared by the end of treatment. I was given instagel but I had so much broken skin it stung for a long time when I applied it, perhaps this is what the nurse is referring to. You might want to think about starting to use your Sitz bath for bowel movements, I did for at least three - four weeks and it really is less painful under water. And I was going to the loo multiple times a day, I am not sure if it was the chemo or the radiation that affected me so much but I had constant diarrhoea. However, when treatment ended the morphine made me constipated, so be sure to use Movicol or Laxido if you move on to stronger pain relief as everything slows down dramatically.
You can also use the Sitz bath for urinating, or a Happypo bottle which helps, although it could be the inside of your uretha that is inflamed. All this must sound insurmountable but just count the days off until the end of treatment and then be very kind to yourself for the next few weeks. If your ex can have your son for longer so much the better.
I am thinking of you.
Oh, Em, this is the hard part, now for the next few weeks. It's easy to think 'only just a few more weeks' when you're not in constant pain, but I know at this point I was surprised at how little encouragement I felt. It was just grimly inchworming through the moments.
My vaginal area didn't get much affected until the 5th week, and then it was just a war zone of red, weeping flesh from front to back.
Yes, I'll never forget the anguish of just finally getting the tentative process of cleaning done and here comes another. Oh, it's a tough period. My heart is so with you. Are you using a Sitz bath or a peri bottle?
Stay on top of the pain! It's a juggling act, the big gun pain relievers and stool softeners, but if you let the pain get too bad, it's hard for the meds to get you back up again.
I'm going to sit on you if you call yourself selfish any more for the getting the rest your battered body so desperately needs. The week after next, your first week of recovery, will be a tough one too, so maybe see if your son can stay with his dad an extra week?
I hope for a bright sunny weekend for you, and for these last days to roll by swiftly (although I know that's a long shot.) You're so close. You're doing GREAT. Please please please take good, tender, gentle care of yourself.
Hi Em44 ,
Yes you’re definitely at the business end of the treatment now & when you’re not at your appointments you will probably want to be resting & not doing much at all! What pain relief are you taking right now? I was unable to take any opiate based pain relief as it just completely constipated me and that was the last thing I wanted so I alternated paracetamol & ibuprofen 2 hourly, it didn’t leave me pain free but took the edge off. As has been mentioned already try going to the loo in the sitz bath, it does help a little. I know it doesn’t feel like it at the moment but it’ll all soon be over & you can start the healing process.
Hi Em44 - I can totally understand how you are feeling at moment but as has been said - you are nearly there! I used to wish each day away as quickly as possible as it became so mind numbing. I was given Intrasite gel and instillagel gel that I mixed together and used morning and night over the whole area plus I also put on flaminal hydro gel plus the medi derma barrier cream all around the rest!. The instillagel has a local anaesthetic in it and helps with sore skin. I used it for several weeks about same point as you. It helped.
I can hardly believe that you are managing childcare with all this - I agree that you need to get Dad to step up. You also need to get on the morphine - you could possibly use a reduced dose until you're sure it won't affect your ability with childcare? This is not the time to ease up on pain meds. I couldn't have done it without oramorph and although I sometimes had to reach for the Laxido to help (and it really did help) it was worth it.
I remember blubbing to the nurse how confusing and tired I was of it all - its normal! Give yourself a huge pat on the back because you are doing really well in what is a hard hard time and it is perfectly natural to feel as you do. Afraid the tiredness will continue to mount so rest as much as poss.
Thank you all so much Irene75359 ridetbred Nikki65 Cranford your replies have been so very much appreciated and useful, as always. Unfortunately my son's dad has not been able to help out (I could easily rant about this but this is perhaps not the right forum! big sigh).
The pain on urinating got a lot worse over the weekend and despite using jugs of water & even sitting in a shallow bath I just couldn't go - ended up getting cranberry juice and some cystitis granules to drink which thankfully did the trick. So I'll stock up on these in case in re-occurs, I'm not surprised by the radiation, along with so much cream and gentle blotting after a wee. The spot was on the side of my outer vagina tissue, there's a lump under it but it's dying down now, not sure if that had anything to do with it. Nurse said it's to be expected.
Think I've got slight breaks on skin at moment, so will make use of the jug of water and bidet bottle. I've got the sitz bath out to help bowel movements. The pain isn't as bad (yet) as that which I suffered a few months back so I keep reminding myself of that in an attempt to grimace through it for now. I'll try the instagel and see how I get on but good to know it may just sting.
I've only had a few nights of diarrhoea, but this included Sunday night, so after a long day at hospital yesterday and getting chemo pump on again - by the time I lay on the radiation table the lovely nurses came back in to say they couldn't proceed due to a blockage of wind! I would say how embarrassing that was but by this stage I laughed and had to go to relieve myself which was harder than usual. My body appears to be clamping up and I think I'm becoming numb.ish from waist down as can't sense things as I usually would. Ahh my son definitely knows I don't normally have a trapped wind issue . Psychologically, I don't think I'd released any gas just in case I may have had an explosion!
Ahh last full week & with chemo pump - I hardly got any sleep last night. I remember that happening on the first night during the 1st week too, I just can't switch off and feel all het up. Really hoping for a good sleep tonight to see rest of week through. They have lowered the potency of this 2nd 5FU dose due to reactions last time, so keeping fingers crossed any reactions may not be as bad!
Before I go, I'd like to mention Sunnygirl who only has today & tomorrow to go, and she's been on that trial with a stronger radiation - you're doing amazingly well and I really hope the next 'at home' phase goes just as well for you...this wonderful group & I are here to help you through it.
I hope you all have a good week, at least it's finally warming up and sun's been shining Xx
Em, truly, not long to go. I am so sorry you are having these problems, what a pity your son's father couldn't step up. I'm pleased you have the very painful urination sorted, and if you are taking anti-nausea pills they are more likely than not to be steroids which doesn't help with sleeping.
I had wind too once, I can laugh about it now, at the time the nurse said very kindly, go to the loo and try and pass it. Well, try pushing with a full bladder ready for treatment, let's just say it was very very difficult!
Really hoping this week flies past, I am thinking of you.
I am so in awe of you, single-parenting through this ordeal. You are a superhero!
I had a lump in my vaginal area a week or so after treatment ended, which really worried me but resolved itself completely in less than two weeks.
I know there are differences in treatments between the US and England, but I'm so puzzled by you guys needing full bladders while that never came up for me! You'd think that radiation machines would work pretty much the same way.
So glad it's getting warmer and sunnier! It's so much easier to stay positive when the sun is shining.
Yep- I can’t believe that I finish tomorrow. I’m so looking forward to not having a 4 hour round trip to hospital everyday!
Thanks to everyone on here, sorry I haven’t contributed much but it’s been so helpful to read advice from others who have been through this tough treatment.
Hi Em44 , ahhh the radiation cystitis!! I remember it well, I too took the cranberry juice route, I suffered with this intermittently from week 2 of treatment, so uncomfortable!
I didn’t suffer with the ‘trapped wind’ issue just the opposite in fact & often wondered if when on the radiotherapy machine when a little one broke free if they could see it on the screen, I now know they could lol but in the great scheme of things I’m sure they’ve seen worse
I’m pleased they’ve lowered the strength of your chemo this time, you couldn’t have done another week like your first,
I hope this week flies by for you, sending lots of positive thoughts your way.
Hi Sunnygirl ,
It’s great to know you’re coming to the end of treatment, huge well done! That long daily trip to the hospital won’t be missed I’m sure! & don’t apologise for not contributing, that’s not a must, we’re here to help however we can & if you’ve gained the help you’ve needed by just reading other posts then that’s great as long as you’re doing ok that’s all that matters.
Good luck with your recovery, plenty of rest & self-care over these next few weeks & remember we’re here if you need us.
You’re all amazing.