I dont ever want to say that I feel ok or that Ive had a good day. If folk ask me and I say Im good, many assume thats it, shes well! It doesnt work like that. I can be ok one day and a complete deadweight the next. I have trash days all over the place and cant predict when or where it will hit me so hard so I’m quite reluctant and fearful of leaving my home.
So day before yesterday 2 weeks after treatment, I finally felt a bit human, just a bit! I didn’t do much as just wanted to feel well for the day and not screw it up. So mainly I knitted!
Treatment cycle 4 was yesterday so doesnt give me much time really. 1 day of feeling well, is it worth it? I came home and had a little cry infront of the kids. First time they have ever seen me cry and both came and gave me a cuddle and said, its ok mum, tomorrow will be a better day…… cos they know the drill now.
I woke up early today starving but first I have to do my gratitude check. 3 things I am grateful for.
1. My boys and how they are coping with everything
2. My home and garden which is enough space for me to potter without feeling the need to go out n get covid
3. Grateful I didnt strangle myself with the pump wire attatched to port grimsby! The bottle itself Ive named Voddy!!!! It takes 48 hrs to finish my voddy!!
Life is pretty trash at the moment and has been since Jan. Ive had a few days here and there but far and few between. I asked for a chemo dose reduction as Im just not handling all the side effects, basically not functioning at all so my wonderful oncologist agreed. He also suggested a week break before next cycle which I jumped all over!
One of the side effects of one of my infusions is neuropathy and cold sensitivity. It is so frikkin weird n tortorous to the brain. Basically all the taps and door handles are chrome. To me for a few days they are ice cold. I cant drink anything cold so the kettle is constantly on to heat everything up. Don’t dare to go near the fridge. Its quite uncomfortable and if i do have anything cold, my lips and hands go into spasms. My arms are heavy and feet just a bit tingly. This lasts a couple of days thankfully but the hot weather is perfect for this stupid side effect.
Sometimes I know I don’t have a choice but I do wonder what the scientists and researchers think. When new treatments are emerging, yes breakthrough, we’ve found it!! Yet the patient has to go through a load of crappy nonesence and wear gloves to the fridge and carry a babies bottle around attatched to the chest with plasters and a huge wire but yeah thats ok…. we got it!!! Really, is there no workaround or did they just stop there and move on to next project without thinking at all about the patient!! The mind boggles. I can’t complain, i am grateful and lucky I have treatment options at all.
Oh I also have to have 6 injections after day 6 to boost my immune system back up again. Ive had 18 so far and another 6 are in the fridge where we normally put the eggs! So my belly is currently like one of those seive things! Gurv is doing them at home for me. Im grateful he can do this at home for me but I don’t half want to whack him when he comes to me with the needle!
We have a massive yellow sharps bin next to the bread bin in the kitchen to get rid of all the needles. Really goes with the decor.
I can open my own pharmacy with the amount of drugs I have in the house. I might start by selling dexamethasone on ebay !!!!!
Yesterday received a beautiful box of artesan breads from a good friend Nishal. Really thoughtful and yummy! I had to leave it and run for my chemo but came back and we all had rasberry muffins with custard. It was lush!!
So now hoping for some better days. Im really really trying to get through and stay upbeat but this has gone on far too long and im literally fighting with every cell in my body every second of my life trying to keep going. Its mighty tough but Im getting through one day at a time.
Im really glad kids are at home. I actually dread the day they have to go back to school cos I won’t have their constant chatter and giggling that goes on all day!!! But I have them until September at least so lets focus on that. They are properly enjoying the time off school and just hanging at home.
I am seeing a hypnotherapist……. I’ll tell you all about it in my next blog!!! Thanks friends for all your support and comments…. I do try to answer everyone…. and I know Ive missed a few…. Ill catch up, helps distract the mind!