This has an impact. Makes you feel down. Happiness is so much harder when your eyeballs hurt and you feel like you’ve been punched in the face. So my internal chat darkens. I become full of self pity. Which I hate. And then self loathing.
Why can’t I be happy for others? Why do I always then turn it into poor me?
So many things I want, that I don’t. Because I can’t.
Some because of my own choice. Choosing to be self employed. Working to others timetables is almost impossible. Being at work for 9am and not finishing until 6, 5 days a week would kill me. Choosing to do something people see as a luxury rather than a no brainer makes it a challenge to get new clients. Choosing to live in zone one which is so fucking expensive, because it makes life so much easier as I can get to most places in about half an hour, but therefore have no money. Which also impacts on everything.
I have to live on my own. I go to bed at 9pm most nights. I need, well at the moment, nearer 12 hours sleep each night. You can’t do that in a flat share. You can’t impose quiet and restrict others because you have to go to bed.
And because I’m tired and really struggle with evenings. I don’t really see any friends. I just sit on the sofa on my own. And go to bed on my own. And that can be pretty tough. Especially when you are a tactile person and need and crave hugs and cuddles.
There is wonderful news in my family at the moment. And all I can think is. It’s not fair. Why can’t it happen to me. What did I do that’s so wrong to deserve the life I have. And I hate that. I really don’t like myself for thinking like this.
I’m 35 next year. This is not what I imagined.
And for all of you who think ‘you’re SO young’. You can fuck off. I’m not. This is not what I want. Yet it’s what I have.
I thought cancer has a lot to do with it. It impacts on everything. It scares people off. It’s like having a child that no one wants to take on. I can’t get rid of it. I’m tied to it. But maybe that’s just a part of it. Rather than the reason.
I don’t blame cancer. Then I would be blaming my body. Maybe I should. I don’t know. There is obviously something fundamentally wrong with me. Maybe I think it’s cancer that’s off putting as that’s an easy thing to focus on. Maybe it’s just me.
So a rather self indulgent whinge about ‘poor me’ who is utterly fucked off with life at the moment.
Your blog posts echo how I’m feeling at the moment. I was diagnosed with lymphoma and CML in 2011. Did IV chemo for lymphoma and it was cured. That seems much easier than what I’ve been through with CML for the past 7 years. Like you, I am very sensitive to these TKIs and take half or less of the standard dose. And my Tasigna isn’t working very well at the moment. I’ve been offered a stem cell transplant by MD Anderson (I live in the states but lived in London from 2013-2016), but I am scared shitless that I’ll never properly recover from a transplant. So I kind of float along, some days feeling ok but most days living with horrible pain and stifling fatigue. I just wanted you to know that you’re not alone. Your life sounds so much like mine that it’s scary.
ReplyDeleteHi Rachel, I'm sorry to hear that you feel like me so much of the time, but it's also nice to know I'm not alone. I have also been offered a transplant and like you haven't done it because of how much worse I could be. I hope things get better....
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