I thought it might be helpful for those about to start their treatment, or who are part way through, if I gave an update on how I'm doing after treatment finished.
I completed the standard 28 days of chemo (one mitomycin infusion followed by daily capecitabine tablets) and radiotherapy two weeks ago. For the first 3-4 weeks of treatment I was feeling pretty good - not much discomfort or pain, and the only real symptoms were the need for an afternoon nap and a change in bowel habits meaning that I needed to go almost immediately after getting up in the morning (I think going from horizontal to vertical is what was triggering it as it didn't seem to matter what time I got up!) and then following that up with 3 more trips in the first 90 minutes of being up. Week 5 was where the major itching and stabbing pains started to hit, and my skin was really sore, though not broken. I was given hydrogel and flaminal, which helped a little but I really didn't like the gunkiness and how it felt 'wet' all the time, making me worried that I was leaking or bleeding when actually it was just the gel. By the end of treatment it was sore to walk more than 100m or so. I managed throughout on just paracetamol. I was prescribed codeine in week 5 but didn't take it as the fear of constipation was worse than the short lived pain I was experiencing. This continued for just under a week after finishing treatment, and I think my side effects peaked at day 7 after finishing. BMs felt like passing shards of glass, and weeing was not better. All the gels stung like crazy to apply and the itching was keeping me awake at night. I decided that a change of plan was needed. I ditched the hospital gels and the paracetamol and bought a big tub of sudocrem and a pack of antihistamines. Honestly, within 24 hours I felt right as rain. The itching stopped completely (I'm still taking one nightly antihistamine tablet) and my skin healed within a couple of days. I'm still slapping the sudocrem on every day.
So here I am after 2 weeks - no pain, skin feels pretty much recovered and I'm feeling like myself again. No napping, but am sleeping close to 10 hours a night. BMs under control - seems to be little and often, but no major urgency or other issues.
I appreciate that I may be one of the lucky ones, and I may yet slide backwards, so I'm not being too cocky about it, but thought that it might be helpful if you're behind me on your journey to know that there is light at the end of the tunnel. Now all I have to do is wait to see if the treatment has worked (and to stop worrying that if I'm not feeling any side effects then that must mean that it isn't working!).
Any questions please do ask.
Sarah
