My story

Don't know where to start, but here goes. I've had (suspected) IBS for over 35 years and was finally diagnosed about 10 years ago. Last year I was offered a bowel screening test so decided "why not, what's the worst that can happen ". Well, it came back abnormal so was referred for a colonoscopy in November 2021,which showed a lesion in the anal canal. Admitted to hospital in early December for biopsies which showed stage 3 tissue changes, but no cancer cells. Admitted back into hospital for further treatment where they removed the lesion. At my follow up appointment in March I was told they had found cancer cells and that there wasn't a clear margin visible in the removed tissue, although it is only Stage1, so that's a good thing. Fast forward and I'm having a PICC line fitted next week and starting chemotherapy with mitomycin and 5FU and 28 sessions of radiotherapy starting on the 7th June. So it's been a bit of a confusing time lately. I don't have a clue what to expect, or how I'm going to feel, I do know everyone reacts differently to their treatment so I'm hoping for the best and planning for the worst. Fingers crossed. Sorry for the long post but needed to get it out there. 

  • Hi 

    . A big welcome to the forum . So pleased you joined in the chat .

    That was a life saving decision you took ! But it does send you down an unexpected pathway so I am glad you have reached out and open to sharing with us .

    I will pop on a thread which is helpful in preparing for radiotherapy . 
    https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/227598/radiotherapy-care-top-tips

    I will also link in  as she is very helpful in sharing with regards to radiotherapy experiences and it does reduce fears . Another poster who worked in that friend explained recently that the machines are so high tech now that they are very precise and preserve the non cancerous tissue. Which is why it’s much kinder than what people used to report in the past . It was a very helpful post !

    Take care ,

    Court 

    Community Champion Badge

  • Hi  and a warm welcome from me too. I’ve not had the chemo that you’re having but here’s a link to the Macmillan page on it.

    www.macmillan.org.uk/.../mitomycin-and-fluorouracil

    All chemo has side effects but it’s highly unlikely that you’ll get all of them and there are lots of pills and potions to try to combat them. It can help to keep a diary as a reminder of any worries that you might have and also you might find that a bit of a routine develops - the first couple of days after the iv might be tough but then you might start to pick up and can plan a treat for those days?

    The picc line is brilliant and saves them trying to get a cannula in everytime and they can also take bloods out. It’s painless to have fitted but you have to keep it dry so ask them for a prescription for a limbo arm - it’s a plastic sleeve with a rubber seal at each end which you pull over the picc line to keep it dry in the shower. I’m not sure how old you are but you can also get a form from your doctor as you’re entitled to free prescriptions.

    Ive covered a lot of the radiotherapy aspects in the link that Courts sent you. I found it to be pretty tolerable and used to go into work afterwards. Others have experienced fatigue particularly towards the end of the treatment so play it by ear and rest if you need to.

    Hope this helps but if there’s anything that you’re particularly worried about then please ask?

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm