Three weeks post treatment

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Hi Everyone I really hope that you are all finding your way through this time day by day.

I apologise for having not been on here for a while. 

Treatment started 8th November at the wonderful Singleton Hospital in Swansea

One off Mitomicyn chemotherapy injection then 5.5 weeks of chemotherapy tablets alongside radiotherapy

Any advice please on how to handle these side effects that I knew were a possibility. The radiologists are saying there are side effects becaise of where my tumor is/was they were right that when treatment finished they would increase which they did. 

Treatment finished on the 15th December and I have been staying at my Darling Dad's since. 

I found the toilet so difficult for the first two weeks however this is easing somewhat but I do tend to need to go to open my bowels a few times a day. Also my stools seem to float which concerns me. I am eating normally but I find I get bad tummy pains and terrible wind which I can't let out otherwise I have an accident. 

The pains are in my hips particularly the left hip and in my groin and I have quite numb legs a lot of the time. 

The skin is healing well around my anus where they targeted the radiotherapy.but I find as the day goes on my pain increases with each bowel motion. 

I am walking when I can but find I need a walking stick to get about any distance. 

Now it's just the wait until my three month scans. 

Wishing everyone a wonderful New Year 

Paddybud xx

  • Paddybud

    It is lovely to hear from you, although I am so sorry that you are going through the mill right now after treatment.  On one of my very first posts on here, I appealed for help as I found bowel movements excruciatingly painful and that was around the nine-week mark after treatment ended.  I wish I could give you a more definite window as to when the pain ended BUT it did - almost two years down the line, they are definitely not always comfortable but never like those early days.  So hang on in there, they will get better.

    Don't worry about floating poos - nothing about them is the same after radiotherapy.  My experience is just don't get constipated, everything else is bearable and don't examine too closely, therein madness lies!  And I am not making light of what you are experiencing, it is just the voice of almost two years experience and mentioning numerous symptoms to the oncologist who nodded and said, ah yes, that's normal... I had very bad wind too, I couldn't control mine especially first thing in the morning and occasionally left evidence but that got better too.

    I am sorry that you are having pain in walking; I was tender and stiff after treatment but didn't experience that or numb legs so I am hoping that someone who has had this might chip in.  Just mention what you are experiencing to your oncologist so it is on the record.

    I am hoping that everything improves for you, it is very early days and you have done so well.  And wishing you a very happy and healthy New Year too!

    Irene xx

  • Hi Paddybud,

    So many kudos for finishing the treatment, and although the early recovery period is so challenging, it does mean that you're almost through the worst!

    The floating logs perturbed me a bit too, at first, but I'm used to 'em now. 

    I had to take lots of Gas-X or Beano for the painful and occasionally 'more' gas. I still keep it on hand.

    I frequently need OTC meds for hip pain, and anal pain, none nearly as bad as the post-treatment period.

    I was barely creeping up and down the driveway at this point, I think it's brilliant that you're out walking! And I always use my sticks these days. 

    I think you're amazing.

    Suz

  • Hi  ,

    It’s great to hear from you, thanks for the update on how you’re getting on. 

    A lot of what you’re experiencing seems to be unfortunately the norm following our particular treatment.

    Oh the gas!! I suffered terrible wind in those early days, I think it’s because internally everything is so irritated & inflamed by the radiotherapy, I wore pads the whole time as I just couldn’t trust a fa#t!!

     The hip pain, strangely enough my left hip too, was really bad in the beginning, I also had bilateral sciatica which was new since my treatment ended, this continued for a long, long time for me (I do have osteoarthritis also) & sick of taking painkillers I went to see my GP, she ordered X-rays & after reviewing the results referred me for some intensive physiotherapy (it’s actually classed as self referral now!). After seeing the physio twice he decided that my hip pain was due to something called Greater Trochanteric Pain Syndrome. Greater Trochanteric Pain Syndrome Is basically inflammation of the muscles that run over your hip & down your outer thigh, he gave me a set of exercises to gently stretch & strengthen these muscles & also a couple of sets to release my lower back for the sciatica. I did the exercises religiously alternate days & it’s amazing how quickly both improved. I still do the exercises every now & again & my sister who works with elderly people & people that struggle with their mobility has given me some strength & balance exercises to add in too. 

    It’s still pretty early days for you yet but if your hip pain continues pop & see if your GP will check you out & give you the details of their physiotherapist so you can see if they can help. Hopefully you’ll see a marked improvement over the next few weeks in all of the side effects you’re experiencing at the moment. 

    Sending lots of healing thoughts your way.

    Nicola 

  • Hello Paddybud, A happy new year to you. I would say it’s early days to expect your bowel movements to not be so painful but remember your anus has taken a right battering. I found sitting in a sitz bath whilst opening my bowels much more comfortable and kept everything clean. I also would sing as loud as I could in my head of course Whilst going to the toilet. The stools float due to gas. I couldn’t eat the same foods after treatment and still can only drink lacto free. I was eventually put on a FODMAP diet to hep with the constant toilet visits. To this day I cannot touch citrus fruit and I’m coming up 29 months post treatment. I also had some hip pain but every morning and evening I would lay on the floor and do some pelvic stretches which helped. I don’t experience painful bowel movements now and only occasionally sore if I have eaten something I shouldn’t have and had to go to the toilet several times. As time goes on you will be your best expert  on what works for you and what doesn’t.