Hi All,
I’m new to the forum, finished chemo-radiation in late January, then had surgical ablation of a couple of liver lesions in March. I was declared NED in mid April!
I am simultaneously enjoying being NED and out of treatment, and often worrying about recurrence. I have checked with my team about side effects I’ve noticed post-treatment, and they assure me these things are normal for this stage of healing. They don’t interfere with normal life for me, but gosh, they stress me out! It is particularly stressful because some of the symptoms are similar to what I experienced prior to diagnosis.
I’m wondering what others might have experienced after completing treatment. So far, I’ve noticed occasional mucous in my stool, sometimes with a bit of blood, some sensation of stinging/burning at the site of the primary tumor (I don’t know how to explain this sensation!), sometimes diarrhea, sometimes constipation. My energy level is quite good. I sleep well. None of the symptoms is persistent or worsening, they just come and go.
I hope everyone else out there post-treatment is finding their way. And I hope those awaiting or in the thick of treatment know that it does get better!
Best wishes,
Red
Hi RedCurlGirl,
Welcome to our little corner of the Macmillan online community although I’m sorry you’ve had the need to find us. I’ve just read your previous post & many people like yourself sit in the background for a while & seem to get everything they need from reading other’s experiences as many of your questions can be answered this way but it’s great to see you’ve started this discussion as I think knowing about how people cope with their lives post treatment is really important.
I was diagnosed in February 2018 with squamous cell carcinoma, caught very early thanks to a very vigilant locum GP at my health centre! I had a local resection as first line treatment which removed my tumour but due to a small area only having a 1mm clearance I went on to have chemo-radiotherapy as part of the PLATO clinical trial.
Thankfully I’m 4 years NED & the for me the legacy of this treatment is minimal. Like yourself I do have the odd smear of blood, generally following a difficult bowel movement, this has definitely got less & less as time moves on though. I’ve been left with a level of sciatica which is manageable. I have anal stenosis which I have to be mindful that I eat a diet that keeps things moving or I get what appears to be constipation, I don’t think it’s true constipation I think it’s more likely the stenosis that’s put paid to the stretch I used to have in those muscles! I always keep some Movicol on hand for these occasions but as with the skin issues this gets less frequent as time moves on. I had some IBS symptoms prior to treatment & this seems to include a few more foods now, unfortunately coffee seems to be one of these & although I’ve always drank decaffeinated tea & coffee the coffee leaves me with awful bloating & really gassy now, out of everything I do so miss a really good cup of coffee. I too sleep well & am back to previous energy/fitness levels, I walk my dog every day, I went back to work 5.5-6 weeks after my treatment had finished & haven’t had to have any sick leave since apart from when I had covid last October & I took the allotted 10 days off work. The stinging/burning sensation you talk about is difficult to describe isn’t it? I had this too almost like a feeling of inflammation, I still get this on occasion but very rarely now in fact strangely enough I had this around 2 to 3 weeks ago, I mentioned this at my 4 year check with my surgeon last week but he didn’t make anything of it just agreed that it’s most likely skin related again, he went on to examine me & said everything felt & looked normal, I’m not to be seen until next June now & if everything stays as it is I’ll be discharged.
Although we all want to return to what we were prior to diagnosis I think being a survivor changes something within us forever. I’m not sure that fear of recurrence will ever leave me but having spoken with other cancer thrivers this is true after any cancer diagnosis. I strive for this not to have a negative impact on my day to day life but I’m super vigilant in checking for anything that’s not my ‘normal’ & I’m much more aware of what I now put in & on my body!
I hope that sharing our experiences gives others the encouragement that’s sometimes needed when you’re newly diagnosed or just starting out on treatment. I can’t thank those people enough on this site that supported me throughout, their words meant more than they’ll ever know.
You’re doing amazingly well in your recovery & long may it continue, sending lots of healing thoughts your way.
Nicola
