I was foolish to think I could avoid side effects.

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Hello everyone,

Thank you for everyone’s kind responses to my previous posts. I am sorry I have not replied sooner, strangely I’ve not had the energy to put finger to key pad, can’t think why Joy.

Someone asked about sharing my post and hoping that was ok. Absolutely ok. When I post on here it’s out there in the atmosphere, if my posts help in anyway I think that’s a bonus.

When I started my treatment journey I very naively thought I would avoid any side effects. I was very clearly in denial and on Planet Zannusi.

This weekend 1/2/25, has been very challenging. I have felt like I have an underlying infection. A general malaise very similar to what one might get when one’s brewing a cold. I have had broken sleep over night with sweating and so I’m feeling really uncomfortable and miserable.

I regularly checked my temperature and whilst it has fluctuated it has always been within acceptable ranges.

Just in case I spoke to a nurse on the treatment helpline and she put my mind as rest.

Last Tuesday I told the reviewing radiographer that I felt the skin around my anus was breaking down. She insisted on looking and told me there was no sign of that. She gave me emollient cream. Now, I wish I had pushed her for some numbing cream because this weekend I have been pooing broken glass. It got so bad I took myself off to the chemist who gave me some Vagicil. This definitely helped. I will not take no for an answer this Monday.

Other side effects I’m experiencing, sore and dry hands. I have a split on a skin fold on one of my thumbs that will just not heal. It’s tiny but if I catch it the air still seems to go blue. I also want to pee all the time regardless of how much I drink. I must be absorbing moisture from the air. I am tired and have very little energy to do very much. Consequently my bed seems very attractive at all times of day and night.

I am glad to say that I only have two weeks of treatment left.

 It’s my 62nd birthday tomorrow. Maybe I’ll reward myself with a nice pain free poo.

  • Hi LCraig

    Sorry you are having a rough time of it. I had instillagel from my hospital, some people find it stings a bit but you go numb pretty quick, I found it lasted for about half an hour before it started wearing off. It's good you are over half way keep checking those days of. Most importantly Happy Birthday for tomorrow Tada. Xx

  • Thank you  That is very kind of you.

    I’ll talk to my reviewer about instillagell. I’m happy to try anything.

  • Hi  ,

    Your description of the fatigue you’re experiencing sounds very familiar! I would have to have a nana nap every day after returning from my radiotherapy & I’d be ready for bed at 9pm every night (I was often asleep on the sofa before then!). 

    I’m sure your treating team should be able to give you something for your hands, I believe that this can be connected to the chemotherapy, if you don’t get any joy mention it at you review with your oncologist or if you were given a helpline number by your chemo department then call that & query if there’s anything they can suggest. 

    You’re approaching the business end of your treatment now so keep your eyes on the prize, it does get tough but it’s what’s going to give you a healthy future. 

    Sending lots of birthday wishes for tomorrow & I'm praying for a pain free poo for you. 

    Nicola 

  • LCraig

    When I read such a descriptive post it all comes flooding back, and I think, I had forgotten all about that, and oh yes, I remember this.  And I am not surprised that you are feeling so miserable.  You need to be really very kind to yourself, take all the rest you need and yes, go to bed when you want, eat what you can, when you want.  I promise you one day in the future your memories of this miserable time will have softened and some you will have forgotten completely.  You will be rebuilding your life hopefully cancer-free and this will all be a bad dream.  It is just getting to that point that is very hard, and we know, we have all been there.  Two weeks will really pass quickly and then you can get down to the business of rest and recuperation.

    I hope your poo wasn't too painful and when you see your radiographer this week please tell her exactly how you feel and that you need numbing cream, stronger pain relief, dressings - they can prescribe that same day.

    I hope you manage to have a good birthday, even if you have to leave off the real celebrations for a few weeks.

    Gentle hug

    Irene xx

  • Thank you  I appreciate your encouragement, kind remarks and I gratefully accept your wishes for my birthday. Such an outcome will be a bonus Joy.

  • Hi LCraig,

    Im sure it will seem somewhat ironic to wish you a happy birthday but I wanted to do it anyway.

     I hope the day has been at least bearable although no doubt lots of resting up before and after treatment. You are very much at the sharp end of your treatment schedule now and I’m sorry for the pain and exhaustion you are going through. I hope you were able to source some Instagel as although I was never offered it , it sounds much needed. Hope you let them know about your hand too.
    Hope very much that a pain free poo was possible too. The things we end up being grateful for!

    The tiredness is very debilitating isn’t it. I had no idea that so much sleep and rest were humanly possible until a few weeks into treatment. As the others have said, do what you need to do, rest whenever you can, eat whatever you can face and absolutely ensure that you have pain relief that works.

    Wishing you well for the days ahead x