Round 2 Complete – Into Round 3 – Any other news

Hi Everyone,

I’ve now completed round 2 of treatment and I think all in all I’m getting to understand this Irinotecan. I mean, I know I’ve been on it before and it’s not the same as it was before. Whether that be that its delivered over a 32-36 hour infusion or not. It is different how it’s hit me.
I’ve managed to speak to the Doctors, Nurses and consultants about it too.
However, it would appear not everyone is being hit by it in the same way. I’ve lost all of my hair now. I have a few patches of head hair, it looks really odd. It’s like reverse alopecia. Where as you’d usually expect to see lots of spots of missing hair, mine has completely gone and left me with a few spots. Obviously the best thing to do here is to shave my head which I have done. I don’t particularly like the look of me with a shaven head. I never have, but it’s what I have to do.
Thank you for everyone for your comments that it suits but alas, you’ll never convince me of this. I think I’ll just get used to it.
It’s preventing my facial hair from growing which is never going to be a bad thing. You still have the odd hair trying on my chin which means I have to shave about once a fortnight but I can handle that. My chest hair amongst others has also departed, I am pleased to report that my eyebrows and eyelashes are still going strong and this pleases me. I don’t particularly like the goldfish look that you can get from full body alopecia as you actually need both your brows and lashes.
Semi on the same subject but I haven’t been getting the other known side effects others are suffering. I don’t get the vomiting or diarrhea which, lets face it. Is a godsend really.
The G-CSF injections weren’t as bad this fortnight, though I had a plan to preventatively take pain killers from the 3rd day of taking the 5 day course, I ended up medicating with Paracetamol and Tramadol for 3 full days and 1 half day and I will say that although I had zero sleep pattern during this timeframe I didn’t suffer anywhere near the amount of pain I did the first fortnight.
Again, the fatigue has hit me full force as has the sad metallic taste from all foods. This usually kicks in on the day of infusion for about 8 days in total, sometimes up to 10 days. I combat this by eating strong tasting food, but there are times where everything just tastes of nothing. I put half a lime cut into about 3-4 wedges into a glass of water today. Each time I top up the water, I mush the limes up a little more. It doesn’t taste so metallic this way.
I’ve tried juices but I really can’t get one to taste right, they end up tasting off-putting when I put too much concentrate in, I’ve learnt my lesson with that.
With foods, chilli and paprika are my friend. As is a lot of garlic and ginger. Kerry and I eat a lot of stir frys. This is easy to get a flavour profile that I can hack. I don’t think a bangers and mash would fit the bill if you follow.

So aye, treatment 2, you fanny. What else you got for me?


Treatment 3

I was actually on treatment Monday of this week (09/05/2022) and you’ll never Adam and Eve it but we tried my port to flush first and it actually gave blood. Yep! Full on, we didn’t even ask it nicely.
Whether it was the way I was on the bed or the way I’d turned my neck to not look at the fucking great needle heading for my chest. Well…Whatever! but it worked. This meant no cannula or butterfly needle for me on Monday.
I had the bloods out, whilst I must admit, Katie my main nurse moved like the wind to get the vials filled just in case it stopped giving for any reason, then attached my fortnightly bag of poison and then handed me the best bit of news I’ve heard in MONTHS!

Now, I’ve checked with Kerry. I swear this isn’t something my chemo-fogged brain has just conveniently forgotten. Was I told this when Kerry wasn’t present? I mean, plausible but I make sure that she is there and the times she isn’t I record the consults with Doctors and Consultants. It just makes sense.

Anyhoozer,

We are now established on the trial. I do not need to be in for 8-9 hour infusion days.
I no longer need to come in on repeated days throughout the week or following week. I won’t bore you with that I have been doing over the last month but suffice to say that Kerry and I were in hospital practically every week day for up to an hour at a time. They’ve now changed everything to:-

Friday – before infusion day to take bloods to see if I am well enough for treatment.
Monday – Infusion day.
Monday (Next week) – Bloods, ECG and Blood Pressure.

Rinse repeat

As of this morning when Katie called me and improved the news I’d heard on the Monday. They’ve decided that they don’t need me in for the Monday following, so basically it’s just come in on a Friday before the infusion to get my bloods (and any other samples), ECG, Weight and Blood Pressures taken.
If I get a phone call over the weekend, I don’t go in. If I don’t get a phone call. I attend on the Monday @ 11:00 and I get jabbed with a needle and poisoned for the fortnight.

This is actually REALLY good news. It is for me. It’s way less needles. It is for Kerry too. It’s way less disruption for her. I can’t imagine what she hasn’t told me she’s had to shift around for me. The disruption to her sleeping schedule, the works. You know how batshit a gym-rat she is nowadays. She’s competing in her federation of Powerlifting British Championships. I absolutely cannot have been helping with her training schedule.
There’ll be something to be said about travelling to and from the hospital when I am absolutely shattered too. The obvious COVID-19 worries. I’d get completely wiped out by a cold at the moment so getting COVID would be a disaster. I’ve had to discuss with friends and family wanting to call in at the moment and say. If you have been around any ill people. Can we take a raincheck for a week or so?
So far, everyone’s been really understanding, but I don’t want to put any delays on this treatment because I was too unwell.
So, It’s Wednesday today. I had a catch up with work yesterday just letting them know how I was and getting my bit monthly update on how everyone at work is. It’s nice to catch up on that level but I still have the ones I contact outside of official ways, SMS, whatsapp, signal etc.

I still have another couple of days before the G-CSF meds have to start. Then a couple more days on top of that before I have to medicate. I’m already starting to get the hazy vision. I had managed to play a couple of games on the PS5 today and Yesterday. However, I tried playing on the car games and the steering motors were absolutely wrecking my arms and I had to give up on that for later in the fortnight when I feel stronger.


So I guess I spoilt the news with the later lines of the previous paragraph but I did buy the sim rig I wanted. I went Logitech and I wanted to say thank you to everyone that messaged me and warned me off getting the other parts. Although more expensive, shockingly made I had read. I did more research myself and just read more and more of the same. I’m really happy with the build quality of the stuff I have got. If I want to upgrade it down the line. I didn’t spend so much in the offset therefore it wouldn’t take me too long to save up…or something. I mean it would but just let me think this okay?

Here it is in all its glory. It can be shoved away when needed in the gaming room.

Due to our house having a dedicated ‘Gaming Room’ it isn’t too imposing. However I haven’t actually decided if it makes more sense to move my gaming PC into the gaming room or to find a HDMI cable long enough to go the 10 metres from the office where our PC’s are to the 4k TV in the gaming room.
I assume probably the latter, I can always bundle the cable away when I don’t need it. My headset is wireless or I could just change the sound to come from my TV but then I’d still need a mic so headset being wireless resolves that. I would just have to switch mic’s in sound settings when I wanted to be on the sim rig.

Oh, I also bought that Ghostwire Tokyo game for the PS5. I’ve about an hours worth of play into it right now. Another linear story game to keep me interested when I can’t do much but move my fingers in a chemo coma.
So that’s Red Dead 2, Ghosts of Tsushima and Ghostwire Tokyo to keep me company.

Well, it’s a short one this week. I’m going to have dinner and watch some Korean drama Kerry and I started on Netflix. I will say, if you can handle subtitles. Korea have some great shows to watch.

-C

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