Well Bloglets,
I know it's been a while.....
So. You won't believe it. A HAPPY ME!!! I know. A rarity. I'm fully aware of that. It's just a fucker that it mainly happens when I'm off treatment, which as you all well know is not often and not for long.
I thought I had better document it before it went and I'm miserable and whingy again. Because I know how much you all love that.....
I have been off treatment for nearly 2 weeks and I became myself again 7 days after coming off it which was incredible as I thought it would take 10 days.
I noticed when walking home last Thursday evening that I was me again. I'd had a late night on Wednesday and wanted to go to bed at 8pm, but it was a friends birthday so I didn't get to bed until around 11.30... I didn't have a great nights sleep and definitely didn't get enough that I needed and was slightly worried as I had a busy day the following day ending with 3 massage clients at 7.30. So to say I was slightly worried about how I was going to do it was an understatement. For the last few weeks the fatigue had been fucking horrific. I wasn't coping. I was always going to go home on the Thursday evening for the bank holiday weekend to have the Friday off as well, but I had to head out at lunchtime. I had so much work I needed to do but I couldn't think. I couldn't function. I was in Pret getting some lunch and phoned home and cried because I was so exhausted I couldn't make a decision about what to eat. I didn't feel hungry which didn't help even though I knew I was. All I could acknowledge was the exhaustion. I had felt like that for a couple of weeks because I had a weekend of fun. And because my energy was getting worse and worse anyway as it seems to do (it's an accumulative effect of the drugs) and not having a weekend to sit and do nothing because I went to a friends wedding, which was magical and I wouldn't have missed it for the world. I fucked myself severely and suffered.
So I was not in a good space and it was getting worse. So to suddenly realise last Wednesday when walking home after a long day that I DIDN'T FEEL COMPLETELY FUCKED AND EXHAUSTED AND I FELT LIGHT AND NOT LIKE I'D BEEN PUNCHED IN THE FACE AND ENJOYED THE WALK AND DIDN'T HAVE TO BULLY MYSELF TO TAKE EACH STEP. WELL. IT WAS HUGE! SO MUCH BIGGER THAN TYPING EVERYTHING IN CAPS LOCKS!!!!!!
And I've been me again for nearly a week. And I might have overdone the whole being excited about not needing sleep so I might not have actually had enough... so today I feel tired. But. It's NOTHING compared to how it was. To try and explain a bit. On Saturday night I only had 8 hours sleep and on Sunday, after spending another weekend at home for my Grandmothers birthday, I got the train back arriving around 6pm. I then had the energy to cook for the week and to do some cleaning/tidying. And it was fine. I could do it. I can stand up without it exhausting me. It's just. Well there are no words.
And it's when I feel like this, when I am fully me again. The me that can get so much done. That I think. Fuck yes to the transplant. I'll smash it! Why wouldn't I do it for the possibility to feel like this ALL the time!!!
And when my parents and family notice how I am. That I'm different. In a good way. They notice the change. And someone else said to me last week how nice it is to see me like this. To be able to formulate a sentence at the end of the day without the effort being too much. And when I'm asked how I am and I say that I'm well and I MEAN it! Rather than thinking, you have no idea how I really feel.
In two days, this Thursday I'm back at the hospital to get the new drug. And I have my fingers crossed. And I hope. And it's fitting that it's Blood Cancer Awareness Month for all of this to be happening. And I hope that I raise some awareness with this. To show how it can be. How it really is. It can be so fucking awful. And then I get a window of amazing which I will hold on to.
So I will be back really soon. If, IF I get side effects from Asciminib I will know pretty quickly...
With love and hope as always,
Me XXX
