I have had a lot of people asking about how I am and I thought now I am actually feeling up to sitting at my computer again, it was about time to stick an update blog on. So in quick recap if you haven’t been reading recently:-
- Cyberknife/SABR Radiotherapy was deemed as not the right course of action right now
- I am back on Chemotherapy for 6 treatments, Review and then 6 more treatments
- I am on 5FU Chemotherapy with Folfox *(not folfiri) and I am having Avastin again.
So people’s main questions have been, how is the new chemotherapy? what are the side effects? Will you lose your hair again? What are my plans? How is the house move coming along?
So firstly, I think that all in all, the two chemotherapies are very similar. The risk of infection is similar, the anaemia, bruising and bleeding, nausea and diarrhoea are the same I would say.
The feeling tired has been a killer in the last week. I’ve been motivated to get up and shower which is a godsend. I have been able to drink steadily, but I have knocked lunch on the head for now. I have to have breakfast as taking medication on an empty stomach is an expressway to heartburn and nausea, but come 18:00 ish I feel I want to eat and I can usually stomach an evening meal.
I may have touched on that fact that I am intentionally eating reduced calories. (about 500 calories a day under my RDA) This is merely to facilitate a slow and steady weight loss. My plan to get to a more comfortable 90kg by the end of the 6 month treatment plan. Then reassess then and see if I would like to lose more or gain more muscle mass.
I have been researching Folfox’s side effects a lot. They are different in that I shouldn’t experience alopecia and I shouldn’t get diarrhoea as much. However on the flipside they do come with a whole bunch of others that I haven’t experienced.
Out of these, I will start with… Esophageal Spasm.
Now, this sounds as awful as it is. basically the whole of your throat decides to go into spasm. This is usually brought on by cold. So I am to wrap up warm at all times. Going out, I am to wear hat, gloves and scarf/snood/hoodie and jacket etc.
Now, you don’t have to tell me twice. I may LIVE in Geordieland, but we all know Cam is Southern and he knows when to wear a jacket. However, I have had the cold take my breath away on this new chemo and it’s horrid. It’s like the worst asthma attack I’ve ever had X10, the fact your lungs want to breathe but your throat won’t let you is awful. It’s like being choked out by an invisible MMA fighter.
The good news is, getting out of the cold, warming up and calming down seems to cure it.
That’s not where the issues with the cold stops.
no, not even slightly. Now, I can’t eat or drink anything cold lest that esophageal spasm happen in the living room. No chugging milk from the fridge, no ‘cold one’ from the fridge, no more ice cold pop or icecream for that matter, but you want to know what really boils my piss?
No fucking bubble tea. My little treat after chemo, my delicious friend, you and I are gonna have to see other people. I may try lukewarm bubble tea but lets face it. It’s gonna taste like bum and I am just going to have to lump it.
I am already over taking my pills in the morning with tepid water, I brush my teeth with warm water (Yuk)
So now we know, just stay away from the cold, don’t breathe it, don’t eat or drink it. Okay! Gotcha. Oh and erm… Don’t touch it either because if you do, it’s like electric shocks.
Yeah! So basically, your hands and your feet get this thing called peripheral neuropathy, they tingle at the best of times because of chemotherapy. You may have been told that you should really look after your feet as a chemo patient, your hands and finger skin cracks something awful and your nails become brittle and soft. However this… This is something to add to the list.
I can no longer touch anything cold, so this means picking something up from the fridge, or if it’s been out laying on the kitchen surface all evening like a metal handled knife is like picking up and holding onto an electric fence. It’s not 10/10 pain, more of a 4-5/10 pain, but the longer you hold it, the worse it gets. It’s fine, I wear gloves out of the house, but I’ve still had the feeling through the gloves.
The car door handle got me something good. I stepped out of bed onto freezing cold laminate flooring and then collapsed into bed shrieking like a banshee.
Again, I can put me bit ‘Grandad Slippers’ on and combat this, but I stepped out of the shower onto the tile floor. WHAM!
Again, I just got back in the shower til the pain passed and next time try to be more careful.
The one that keeps getting me is going for a wee in the night, you traipse through (In my case) the bedroom, landing, livingroom, then kitchen to get to my bathroom and you’re never awake truly. I wee and then ran my hands under freezing cold water (don’t tell me you don’t do it, we are all guilty) and had the shock of my life.
There’s me standing there with my hands in my arm pits, teeth gritted and silent screaming at myself.
Because it’s now something like the 12th time I’ve done it.
However, it’s a side effect. It’s not going to be here forever. I know this, my alopecia didn’t last forever, I have my full head of salt and pepper hair back. I know I can get through this, I have Kerry to help me. She’s been brilliant, if I have wanted something out of the deep freeze or milk put into the cuppa’s. She’s on it like a car bonnet. She’s even got the car door for me a couple times. She can see my frustration and I can see it in her eyes too. She knows we will see the other side of these bloody effects and laugh about them one day.
So, other than these new pains. The obligatory mouth ulcers, tiredness/lethargy bruising and nosebleeds, we’re coping right now. I have managed to play a videogame for the first time in a week. I won’t say I played well as I didn’t but I had fun. Shoutout to Jake Robinson for putting up with my pissing and moaning though.
A few people have also been asking about the house move.
If you have ever bought a home before then you will know what I am about to say. There’s just no news right now. Our solicitor is trying to get information from the vendor, it’s a slow drawn out process. Everything is just crawling along at snail’s pace. We would like to give you a lot of money in exchange for the new house please. Doesn’t seem to make a difference. Slow house move is slow.
Anyways, I feel I have earnt a break, so me, this here cup of coffee and 3 Jammie dodgers are gonna go watch some YouTube,