After treatment

Hi Cl4r3

It's not unusual to find the first few weeks after treatment is finished to be the hardest. That was certainly the case for me. That was when my nether skin became very hard to live with and my hair started falling out.

But it's so individual. There are some folks on the forum who had virtually no after-effects at all. My strategy was to assume I'd be one of them and not get myself worked up into a state of terror beforehand, and even though I was wrong, I still think it was a sound strategy. This journey is difficult enough without buying trouble. 

The really crushing fatigue lasted about 2 weeks, but lingered in a less crushing fashion for months. Still hits me out of the blue sometimes, over a year later. I just roll with it. I'm lucky enough that I can usually rest when I need to, and I'm still alive to do it.

It's a tough balance to walk, between being smart and informed and prepared, and giving your individual journey the opportunity to be one of the easier ones if that's how your body responds. 

I'm still not back to whatever normal was- not sure I can even remember what that felt like- but I'm not in constant pain, I can poop without drama most of the time, and most of my life is rolling along without ANAL CANCER being front and center all the dang time.

When does your treatment begin?

Hugs

Suz

Hi Cl4r3 ,

Suz has given some really sound advice there & there’s nothing really that I can add other than my own personal experience. 

I went into treatment expecting the worst as I’d read some real horror stories surrounding the side effects of this particular treatment. My side effects peaked around day 11 post treatment, for those couple of weeks I slept a lot, I felt completely exhausted. I took regular pain relief for the discomfort I had with the skin reaction to the radiotherapy & I rinsed every streaming service we had on the tv!! I had lots of Epsom or Dead Sea salt baths & lay on the sofa. On day 12 everything seemed to turn a corner, my skin started healing pretty quickly, I was able to reduced my pain meds, the fatigue even began getting less, this happened day on day & I was beginning to feel more normal again! The lessening of the fatigue was a gradual thing, I would go a couple of days in the beginning where I could do lots then I’d have to have a day doing absolutely nothing as I felt so exhausted again but those days just naturally grew further & further apart. I must add I never suffered from diarrhoea throughout treatment instead I swung completely the opposite way & was pretty constipated & I had to take stool softeners so that having a bowel movement wasn’t too painful, this continued for around 3 years post treatment but I no longer need these on a daily basis now. 

I’m a little further down the line now, it’ll be 5 years in June that I finished my treatment & I’m back to doing most everything that I was prior to any of this happening.

As Suz has said though this is your journey, treat it as that, be prepared but just take it one day at a time. You will get through this.

Nicola 

Hello Cl4r3

I found the first couple of months hard-going; three weeks after treatment ended I had stopped the heavy meds because they caused chronic constipation and I couldn't strike a balance with those and the laxatives, so bowel movements (for me) were very painful.  I also didn't have much control and couldn't leave the house until my bowels had opened at least a couple of times. The fatigue was intense too and I spent a lot of time in bed.  But by the third month everything was getting considerably better.  Fourteen months down the line I am still taking stool softeners every day as I have anal stenosis but virtually no pain.  I still make sure I have bowel movements before leaving the house but my control is much much better.  I occasionally get fatigued but I just have a nap, my family are very accommodating! 

My hips haven't gone back to normal, I feel stiff and find stairs more difficult but this is helped enormously by exercise, I walk about three-four miles a day with my dog.  My GP has referred me for physiotherapy as she thinks this is muscular, although she also sent me for an xray just to be sure.  I don't yet have the results of that.

So I have gone to a slightly different normal but one that I am very happy with!

Irene xx