May 2020

4 minute read time.

4th month of chemo and managed to get through it mostly ok. No sickness or even nausea this time and still managed to eat fine but it did wipe me out and the last few days and good couple days afterwards felt like I hadn’t slept! I suppose it could be a lot worse though so I should grateful for that at least. One other thing that I’ve noticed is that get terrible constipation while taking the tablets, not sure if that’s a result of the tablets themselves or just a general not moving around as much or doing any exercise makes my digestive system really sluggish.

My nurse was unfortunately reassigned to help with the Covid pandemic which is a real shame, as she has been an amazing help so far to date. I ended up chasing for my MRI scan as I still hadn’t heard anything but luckily got one booked in, though it was 2 weeks before my consultant appointment, so it turned into one hell of a long wait but I guess on the plus side it did go ahead as planned!

After a talking it through with the consultant I was given a new plan to tailor down my steroids (just as we’ve started discussing it before the immunotherapy rash kicked up and ended up doing the opposite and super dosing on them rather than dropping them down). So I managed to drop from 3mg to 0.5mg over a couple of weeks without any adverse effects, and will come off of them completely at the start of June.

Having the scan also gave me a bit of a kickstart about thinking of the future, only going to have so many scans before I will inevitably be told bad news. One of the main things I started working on is going through our collection of some 6,000 digital photos we’ve taken since our girls were born and doing something with them! So got a nice large scrapbook, printed about 600 pictures and now turning it into a nice storyline book – lots of cutting and sticking!

2 months ago, I began monitoring my weight as was quickly piling on the lbs, to the point where was about a stone and half heavier than my “normal” weight. After cutting back on an awful lot of junk and doing Joe Wicks with the kids most mornings managed to shed 5lbs but I can see why people give up quickly as that’s been a hard slog for only a little change. The main thing is that my jeans do back up again, but the main goal is still to get my wedding ring back on.

Blood test come back showing I was still light on potassium despite eating a banana a day since the previous blood test showed that it was coming up low! Luckily it doesn’t affect immunity in anyway so I’m still as healthy as anyone else in the general population and most importantly could start the next round of chemo.

3 months since the last scan in Feb I finally got the result of my current scan, it was about as good news as could have hoped for as it’s come back showing there is very little change since the Feb scan and in the doctors words is “clinically stable”. Unfortunately, it was a telephone consultation, so I couldn’t see it or get a picture of it so it’s hard to interpret what “very little” constitutes visibly!

After 6 months of being on sick leave from work I had a follow up conversation with my boss about a potential road map for the future. I will state at this point they have been fantastic in supporting me in any way they could. My boss is super optimistic and is willing me to be able to be well enough to return to the office “figuratively speaking” in this instance as they are all currently working from home! Due to my position in the company it’s not particularly feasible while I’m undergoing treatment but will mainly dependent on the Aug scan, any kind of growth would rule out any potential return. However, a good August post treatment scan and it may well be possible to look at September for slowly returning!

Begun 5th round of chemo and after talking it through with the Doctor the 6th round next month will be the last until the next scan in Aug where they will assess what the next steps should be on the back of that scan. Considering that my tumour currently measures around 1cm a watch and wait approach seems a little daunting, though on the flipside if I’m to get back to any kind of “normality” for a while then coming off treatment would be the only way to achieve that.

Edit : After seeing the scan result in August I've attached it below

Anonymous
  • FormerMember
    FormerMember

    Xpio

     You made good reading there, I am behind you in terms of treatment, but understand what you are going through, and the wait for the final MRI is so hard. 

    I am into my first week of Chemo & radiotherapy, no side effects so far. but they will not do another scan until 2 months time, when they will be able to get a better look at the tumour they worked on, however I am more concerned about the second Tumour they found at my last scan.

    I wish you luck, and hope that you keep going for a while longer

    Glenn