After treatment of anal cancer

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I am carer for my wife who was diagnosed 2022.

She had chemo and intensive radiotherapy, but the side effects are devastating for her . 

Mainly incontinence.

It is making her life a misery.

I'm trying my hardest to keep positive for her,but I am struggling.

Any thoughts or suggestions, advice,would be appreciated.David 

  • Good morning Davjo I am sorry to hear your wife has had some life changing side effects from her treatment. Not knowing her history I can only tell you mine and the impact it had/has. I’m around 2 years four months post treatment and the first year was a juggling act with the effects treatment had on my bowels with emergency of needing the toilet there and then unable to wait. When I finished treatment I was going to the toilet up to six seven times a day and some were loose and some were like constipation which can be rather uncomfortable in the early post months. My oncologist led me to a nutritionist who put me on a FODMAP diet. This was quite a major change of foods I was used to and was told to stay on this for twelve weeks. It was a major improvement on frequency but still when I wanted to go I had to GO THEN! I know some members on here have urgency issues in the morning and think the spinchter muscles can be affected through radiation. I only drink lacto free milk and no caffeine so decaf coffee. I don’t go near wholemeal bread but don’t like white bread so make my own oat bread. What I could eat before treatment I have noticed I can’t eat now as it makes me loose. Chocolate I can’t eat or citrus fruits but occasionally I will have a satsuma. So my advice would be is to first look at the diet and see what foods cause a reaction. Also go back to the hospital and tell them how this has affected her quality of life. I have had the gut test and what they thought may be the problem isn’t but it’s trial and error and eventually you start to see what you can eat and not eat. Even for me it’s still a balancing game especially if I am going out and my immediate thoughts are where are the toilets. If I go anywhere I’m unsure about I admit I will take an instant Imodium to give me that confidence. Do read up about the different fibres in food soluble and insoluble as they can make a difference. I could say my eating has changed as now I eat for my body and not my eyes and have given up alcohol and any stimulants that can cause loose stools. Please push her medical team for support as she should not have to do this alone. She may also benefit from a pelvic floor physiotherapist to help with muscle strengthening. For me as time goes on things have dramatically improved due to changes I have made through diet and not eating after six pm giving the gut time to rebalance. I live a great life and found a routine that works for me and hope that your wife can too. It isn’t the end and she will eventually find her balance. Be strong!

  • Jaycee 12,

    Thank you for your response to my email.

    I trust you are still keeping well.

    Your words of wisdom, and suggestions are a great help. Will follow up with next  visit to oncologist, which is due next week.

    Thanks once again.

    Davjo.

  • Hello David

    I am so glad that you are there and supportive for her, most of us on here completely understand that a caring partner goes through trauma as well - if you were to ask my husband (who was a tower of strength for me) he would have a few tales to tell. 

    Incontinence is utterly miserable, I did suffer from extreme urgency in the early days and even now don't go out early in the day until I am sure I am 'empty'.  And if I ever need to go again there is always some degree of urgency.  I n the early days I couldn't read the signals from my bowel - I didn't know if I needed to go or if it was just wind, but that issue did improve over time. But if your wife suffers incontinence all day long, then I would say she definitely needs additional therapy, as Jaycee12 has outlined.  She needs to keep her consultant informed of everything that is going on and the impact on her life.  

    She may find the following helpful; The Pelvic Radiation Disease Society: https://www.prda.org.uk/  provides a pack for for people who are suffering the after effects of radiotherapy and I carry their card 'Just can't wait' that explains I need to use a loo urgently.  There is also a lot of information on there signposting the various clinics around the country that treat patients on the NHS.

    I will be thinking of her when she has her appointment next week, please let us know how it goes.

    Irene xx

  • HI Davjo

    It's a shame there's not as much focus on after-care, as so many of us need it. I asked my chemo doc at our last appointment if there were any plans for a department devoted to folks suffering after their treatments finished, and no.

    Incontinence is such a life-changing worry. My cancer was around your wife's time frame, and last summer I clung close to home. 

    I'm so glad to see that Jaycee and Irene have given you some good tips about how to find help, and I have nothing useful to add except that I'm glad your wife has you to help her, and am rooting for you both to figure this out.

    Hugs

    Suz