EC Round 1 days 5 and 6

Day 5 started out very well. I guess I was still benefiting from the Dexamethasone, and I had got the acid reflux well under control. I had been absolutely determined to complete my 200th parkrun. With a still stitched and healing portacath, I knew that would mean I needed to walk the course, but no matter. A good friend volunteered to walk it with me. Walking rather than running meant I explained my circumstances to a few more people - I am still in the stage of only telling people who are close to me or whom I feel need to know - but people were worrying why I wasn’t running. The background to that is I had a hip replacement last autumn and had got myself back to running this year. Nice to know people are concerned. We then went for a post parkrun breakfast in one of our favourite cafes - my husband and I, my friend and her husband, plus another friend. 

I spent much of the rest of the day enjoying the sun.  Prepared dinner, and then read through the instructions on Filgastrim injections. We decided my husband would do it. Not sure which of us was the more nervous but it passed without incident. Got to bed time without incident. 

Then things switch. I change from things being better than I had expected, to oh dear here we are. Up multiple times during the night. The injections are making me really achy, particularly in areas where I have osteoarthritis. I am hugely grateful I got my hip fixed last year, but my left shoulder is painful as is my right middle finger and left thumb. My neck is stiff and my head hurts. Even worse, I have abdominal bloating and wind. No diarrhoea, but I don’t trust I can safely release wind unless I am on the loo.  This continues more or less hourly through the night and morning. I get up for tea at 5am, go back to bed. I get up for breakfast at 9am, go back to bed. I get dressed and manage to stay up after lunch. i eventually got out for a short walk (with loo breaks) which has made me feel better than I have felt all day. I have no idea whether the bloating and wind is the Filgastrim or if it is because I no longer have the dexamethasone. The aching has settled a bit during the day but the bloating is still present. I await this evening’s jab with trepidation.

I have 3 different Board meetings I am meant to be attending tomorrow. At the moment that’s all looking unlikely. 

Anonymous
  • Wow! I love your determination. I always found week one harder and then week 2, esp day 10 onwards, good for running. I did quite a bit of interval training as just as good for our hearts, processing chemo, fatigue bashing, mental wellbeing etc. Resistance training is important too - I went for 3 times a week and was manageable both weeks, even when I didn't feel like it and felt better for it afterwards.

    Are you fasting around chemo at all? I found that really helped with limiting my side effects - 800 cals the day before, the day of and then the day after (until 24 hours post infusion). And then special attention to eating enough to make up what I lost - protein at every meal, regular snacks etc. Its not for everyone but there is medical evidence in support of it if you can bear it. Am not sure how it would fit with weekly chemo, but for 2 weekly it was fine.

    Take care of yourself and just go with the sleeping when you need to, resting when you need to, walk don't run if thats what your body says. Aches should be better once filgastrim injections are finished for your cycle.

    Hope you feel much better from your EC soon.

  • Hi . I am just trying to eat normally if with perhaps plainer food than I would usually have and putting a small amount on my plate first to see how I feel. I have never fasted previously so now doesn’t seem a time to try. So far my appetite and taste for food is pretty normal. I got through the meetings with no real difficulty - went in face to face this afternoon and then moved this evening’s to online and got them to prioritise the areas needing my input first. On the whole today has been quite a bit better than yesterday so am hoping I will continue to resolve through the cycle. Felt a bit less panicked when dear OH put the Filgastrim in tonight as last night hasn’t been as bad as the night before. Looking forward to reaching the magic point where I can run, swim, lift weights again. The portacath stitches need to dissolve / drop off before I reach that point, not sure when that will happen. 

  • It sounds as though it is going really well, insofar as chemo can! Am glad your meetings were very manageable and hope you continue to stay so well. I guess your stitches will fall out in a week or two? Hope you can get back to doing the sports you enjoy really soon.