5 weeks post treatment

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I'm 5 weeks post treatment and wanted to ask a few questions: 

Can I ask the ladies here about the vaginal dilator? At what point  post treatment did you start using dilator and how often? Tbh the last thing on my mind at the moment is sex but I've only turned 52 so i don't want to not be able to ever again!  The first few weeks after treatment my skin was so raw externally that it was not on my mind at all.  I've had 2 episodes since finishing treatment of quite severe constipation and was admitted to hospital one of the times where CT scan showed severe inflammation in colon/rectum (obvs additional side effect  of the radiotherapy) and also a great deal of 'back up'  in that region.  I'm still struggling to get any sort of reasonable/regular movements and mostly still happens in my sanitary towels that I've had to wear since treatment started.   Also , I'm on slow release morphine (40×twice/day) not sure if that's a little or a lot but was wondering how long others took morphine for post treatment and how quickly they reduced/came off it altogether and if so, did it help ease your constipation issues?  I'd much rather deal with some pain and have any sort of improvement in bowel movements if at all possible as it's really starting to get me down. My husband and I had booked a few days away to Faro to try and lift me a bit but unfortunately my bowels decided I wasn't allowed to go so my hubby went without me yesterday as I'd been feeling so bad towards the tail end of last week into the weekend I couldn't risk it. I feel like it's 2 steps forward then 20 steps backwards, you know a week when things definitely seem to be improving and then BAM  something knocks me back again. Has anyone else's initial recovery from the chemoradiotherapy felt like that? 

Finally did/does anyone else have pain in your hips/legs? I really haven't been able to get up and moving like I'd  hoped I'd be able to and not sure if it's a lack of exercise or the treatment that's causing the pain. Honestly there are days  I feel like I've aged about 30 years, I've always been a very 'young' person and I feel  like I'm ready for an old folks home instead these days.Pease feel free to give me a good kick up the arse if thats what you think I need after reading this or alternatively any other advice would be greatly appreciated!

Apologies for my moaning,  maybe it's the photos of the sunshine Sun with face and lovely food  my hubby has been sending me all day from the trip I thought I'd have been on too that's getting me a bit down

Andrea 

  • No arse-kicking from me, Andrea, I'm in awe of you even THINKING about taking on your vaginal stenosis at 5 weeks post treatment! At this point I was still hobbling from lounge chair to bed with frequent stops to howl on the porcelain throne, so getting the Old Girl back into shape was the least of my worries.

    I still have frequent pain, rarely badly enough to make me howl any more, but enough to slow me down. I don't have as much boudoir romping as I'd like, but I'm happy to report that the infrequency hasn't interfered with the quality. I'll be 65 in a couple of months, and while stenosis was a problem when we first started trying for intimacy again, all is well now. It's just a matter of keeping my perineum pain-free long enough to go for it.

    We went nowhere vacation-wise until I was 6 months past treatment, and then it was dicey as it was a day's drive and I had a hard time sitting in a car for that long, so we broke it into 2. I'm sorry you missed out on this trip, but you WILL make up for it! It's just still early days. 

    I only had enough Oxycontin for the first 4 weeks after treatment, so was forced to make the switch to more-pain-but-less-constipation earlier than I hoped to. It took probably 2 months to heal enough and work through exactly what my morning routine needed to be. I need hours of lead time before I leave the house still, in order to get enough coffee me and poop out of me to feel safe away from my Comfort Bathroom. I have my kit in my purse so I can survive out in the wilds without a bidet or peri-bottle (both of which I still use at every bowel movement when I'm  home) and an emergency change of pants in the trunk. 

    Only had a couple of accidents, but oh, how miserable. I try really, really hard to avoid the possibility of those.

    2 steps forward and 20 back was my number 1 song at the phase you are in now. But you're coming out of the crucible. 

    You'll still see me moaning frequently around the forum. Two years out and I still have some issues, or have found some new ones. But it's not as bad as the first few weeks after treatment. May the Gods of Healing grant that we don't ever go back to that.

    Hugs

    Suz

  • Hello Andrea

    I am also in awe of you even thinking about using a dilator, I was in so much pain from all the sores that just managing to pass a stool without an accompanying yelp was an accomplishment!  I stopped all opiate drugs at four weeks after treatment as I couldn't get the balance right between pain relief and constipation, and the constipation, for me, was far worse that the pain.  Even now, two years down the line I still get extreme urgency for the first bowel movement of the day, and even was caught short a couple of months ago late in the afternoon but fortunately I was at home.  My stools are always loose so hanging around isn't an option.

    I can only speak from my own experience, and I don't leave the house until I have had at least three bowel movements.  I take Laxido every day as I have anal stenosis.  I do have much more control than I did in the very early days, although I have not ever gone back to how I was pre-treatment.  I carry a 'have to go to loo' card from the Pelvic Radiation Disease Society (https://www.prda.org.uk/) which I have never had to use, I find that the staff in shops are most understanding and accommodating.

    Unfortunately sex hasn't happened - on the couple of occasions we tried I was in real pain and I discovered that it was not vaginal stenosis but the skin in the perineum which had split.  So that is a work in progress, I massage creams in the area every day to make the skin more elastic and less fragile, I live in hope that sex is one part of my life I will get back!

    I was referred for physiotherapy for my aching hips and Suz enlightened me the other day that I should have carried on for longer than the six months I did the exercises, apparently they take that long to work!  But I walk three miles a day with my dog and it is amazing how everything eases up with movement.  You are much younger than me, but I too prided myself on being really fit and game for anything and being restricted took some getting used to - but I consider it a temporary thing, my fitness is something I am really prepared to work on.

    I am so sorry you missed out on this trip with your husband, but there is light at the end of the tunnel; I frequently go off on trips now and yes, we have to make adjustments (disembarking from a ferry at 7am is somewhat challenging!) but it really isn't like the early days when I was scared to leave the house.  Five weeks out of treatment is very very early, I promise things do get better!

    Big hug

    Irene xx

  • Thank you. I think I  foolishly thought oh once I have finished the treatment after a few weeks, I'll be feeling pretty much back to my old self, having chanted the mantra that the treatment HAS worked enough times to try and convince myself! How naive Laughing. The realisation (aside from the wait to see if treatment has worked & what else can be done if it hasn't worked - I cannot begin to get my head around this much as I pretend to myself & others around me daily that all is fine) but the realisation that it could well take months,  if not longer, to understand how my body can deal with such a simple task as toileting had never entered my head. I, like you have a lovely supply kit that must go with me everywhere & anywhere and it's terrifying to know that really for the forseeable I have no clue how limited my social life can be. I'd love to start back to my exercise classes but couldn't possibly as I have visions (nighmares) of squatting & just pooping mid rep. 

    I'm definitely thinking I want to reduce morphine asap as I'd rather deal with pain/discomfort and hopefully see some sort of improvement in the constipation  side of things. Was on hold over 2 hours yesterday trying to get through to GP surgery to request a callback from doctor, (no luck getting through tho) to discuss titrating pain relief as not sure I should just reduce dose myself?  

    Thank you for your comments and I hope you get things sorted with regards to your scans as it sounds like you are having a rough time at the moment too. Big virtual hugs Hugging 

  • Irene you have been so kind in replying to me on a few occasions,  I feel like such a pain! I was asking about the vaginal dilator as for the life of me I cannot remember what stage post treatment my nurse advised me I should start with it. I think that when I read somewhere that if you are unable to dilate vagina after radiotherapy in pelvic region that it might mean that smear tests could not be carried out and that  worried me along with my husband getting impatient about lack of bedroom action, certainly no pressure at present but for how long...? Lol Laughing

    Did you just stop taking pain relief yourself or following doctor advice? Were you on MST or different medication? Have been unable to get hold of GP yesterday & today and was informed that he is too busy tomorrow so dear knows when I'll ever get speaking to him.

    It sounds like you have had a long difficult journey with regards to your movements.

    I feel like this is yet another thing that was brushed over by my oncology team when discussing side effects. I appreciate everyone is so so different but a realistic heads up about what could possibly happen during treatment/post treatment would have  been great.  I've had no guidance re pain in pelvic region long term either which again sounds like it happens to us all. Oh the joys! 

  • Hello Andrea, As Suz and Irene have said you are only five weeks post treatment which considering what a battering our bodies have gone through I would be surprised if everything was back to normal. I was still very much struggling still at five weeks and was still on morphine four times a day but to prevent constipation I took movicol every night which helped keep things soft. I also have anal stenosis and soon as it was possible I would massage oil in that area after my bath which helps relax. I took had bouts of loose and over regular bowel movements which was stimulated by my diet. I was put in the FODMAP diet which helped improve things and learn triggers. Citrus fruits and chocolate were no go areas and definitely no alcohol. Everyone is different and you will learn what foods you cannot tolerate. As said you are very early days where you will still have inflammation in your bowel.

    i did not start using the dilators until I was given them at 12 weeks post treatment. I actually bought some soft latex ones starting with very small and very gradually increase sizes and plenty of lubricant. Unfortunate I did develop a lump which resulted to another surgery which was quite uncomfortable for a number of weeks and it was the result of the radiation. I then had to wait for it to heal before I felt confident to start again with the dilators. I also developed a a very tight muscle at the entry of my vagina probably due to all the pelvic muscles exercises to help my bowel control (you can’t win sometimes). It is good to use the dilator after a nice warm bath when muscles are relaxed and you are less tense. The last surgery left me with an infection which unfortunately they didn’t pick up for a while and on my visit to gynaecology they did examine me and he said due to diligence of using the dilators the vaginal skin is extremely good with hardly any scar tissue so please when you start you must persevere. 

    I am three years post treatment in April and from two years post treatment to three years is such an improvement with bowel issues although I still have to watch what I eat if I am going out somewhere sometimes and if I’m really unsure then I take a Imodium. 

    it’s not all been plain sailing for a lot of us but we mostly get on with it and I am just starting to not even think about my side effects as a disability and just aim to get fitter and stronger. I have osteoporosis due to treatment and visit the cancer recovery gym twice a week which is great. None who attend have had anal cancer and just totally unaware of what us ladies have to go through due to our bowels but it does get better as time goes on. You learn so much about your own body and what’s best for you. Take care.

  • Hi Andi72

    Don't beat yourself up. I'm amazed you even considered going away at this stage!  I went away 5 months afterwards and had to plan it meticulously.  NO early morning flight - after lunchtime!  And when I got there (Italy) it took 2 days to recover.  I am 10 months post treatment now and was referred to 'late effects' clinic for advice on bladder leakage/bowel unpredictability, tiredness, hip pain. Its an ongoing road to recovery but there are successes along the way overall. I was surprised that they recommended me continue taking laxido every evening but also to take loperamide.  It does help control and balance things more. I took the oramorph for about 6 weeks but I gradually reduced it myself as I needed it less and less and then just stopped on my own when paracetamol was enough. I've still got the bottle there 'just in case' lol. I used the sitz bath for about 2 months. As for the dilators - yes I used them a bit but I have to confess they horrified me as I couldn't bear the thought of it all!  I don't think its too tight down there though. At the late effects clinic she offered me some as a freebie - they were softer and contoured shape but I turned them down as sex is the very last thing on my mind now and I don't really want to pursue it at the moment! I know I'm being stupid but well...  My ongoing issue is hip pain but hopefully that will decrease!

    Be kind to yourself and don't sweat. Its a gradual road to recovery and different for everyone but you will improve over time.

    Carole x

  • Thank you, so much for your  response.  I know its very early days but with regards to the VD  I had in the back of my mind that nurse said I should start quite soon after treatment finished (horrid as the thought of it is  right now lol). It does sound like most people have  had a long and difficult recovery from reading replies and other threads on the forum. I don't think I was expecting that to  be the case but that's probably naivety together with so much to take on board in such a short space of time with limited information as I had tried my best to not Dr Google 

    Hope you continue with improving each day.

    Andrea

  • Andrea, you are not a pain in the least, talking about our various problems and sharing coping strategies is exactly what this forum is for.  So please don't worry!

    I didn't have any doctor guiding me, I had a horrendous night with constipation and ended up with my daughter giving me an enema on the bathroom floor.  I was so traumatised by the whole experience I stopped everything apart from Panadol.  I was on Oramorph and slow release morphine tablets.  I had a couple of days where I was sneezing a lot and I felt a bit strange but nothing I couldn't cope with.  When I had an appointment with the oncologist afterwards I was still having really painful bowel movements and she suggested taking Oramorph again but I declined!

    My treating team were excellent, however, I can't remember anyone telling me about the possibility of painful hips, which I never had before.

    Yes, the joys indeed!

    Irene xx

  • 6  months from treatment , I feel relieved I am now cancer free , however the effects of the treatment is having such a negative impact on my life , unable to plan anything , I seem to have a 2 hrs window depending on what I eat or drink , like you I feel I have aged 30 hrs! 

  • Morning Not Possible, have you thought about asking your team to be referred to a dietitian. I had o be put on a low FODMAP diet due to certain foods triggering IBS symptoms. I was on this for twelve weeks and this rapidly improved the frequency of bowel issues. I still drink lacto free milk, decaf tea/coffee and don’t eat cake or biscuits or very frequently on special occasions or chocolate. Citrus fruits seem to trigger things off and whole meal bread. It’s swings and roundabouts. Drink plenty of water, I drink at least 2 litres a day and sadly can’t tolerate alcohol. Search supplements that help bulk stool like pysllium husk or arrowroot powder. It is a juggle but from where I was and two and a half years down the line I am a different person.

    Julie