It’s all about me. Isn’t it?

I know I have a massive WHAT ABOUT ME complex. Also known as middle child syndrome and also getting so much attention since my diagnosis. Which has lessened over the years. Obviously. It’s old news. Time moves on. Other people get Cancer. Die from cancer. Get married. Have babies. Buy houses. Change jobs. All these things are important to them. I get that. I really do. 

Yet. 

What about me? And trust me. I’m so fucking bored of it all. More than you are. 11 and a half years. So. Fucking. Dull. I wish it was over. That I could move on. That I could...Well. My parallel life. And it’s not to say I won’t. Tick tock. Tick tock. 

The NHS was 70 last week and all I saw were posts saying how amazing it is and how people are happy it’s saved them. And it is. I mean it’s been completely broken by the general public using it for what it’s not meant to be for. For too many chronically ill people like me draining resources. For people demanding aspirin on free prescription instead of paying 70p for it in the shop. And so much more. 

And I hate I cost so much. I feel very guilty about it. But at the same time I am grateful that I don’t get a bill every time I go to clinic and pharmacy. I wouldn’t be able to pay for it if I had to on an ongoing basis. I am so grateful for all of those who pay their taxes that pays for my treatment. 

And yet. Am I grateful that the NHS has saved my life? Honestly? I don’t know. This is of course said knowing that I won’t die. I might feel very differently if I was saying goodbye to my life right now. 

I seem to be writing on a topic I wasn’t going to. Obviously I need to get it out. 

My fatigue is so fucking awful at the moment. It’s harder to be happy. 

And what about me? I write for an American site and occasionally I look at the comments and it’s interesting. They are all about themselves. No one really says ‘great blog’ or ‘thank you’ or ‘I feel the same’. Not that they should of course. That’s what I’m used to from the British people who read my blog. Getting support from them in their comments. Especially my Bloodwise gang. They keep it focused on me, not them. And another thing about the Americans is that they always mention Myeloma. I’ve got fucking CHRONIC MYELOID LEUKAEMIA. it’s DIFFERENT. Faaarking hell. And I don’t know if it’s because they want to mention Myeloma and increase awareness. Which is great obviously. Everyone thinks Myeloma is skin cancer. But. I don’t fucking have that fucking cancer. And it pisses me off. 

I could not write for them. But. It would be one less opportunity to talk about me. 

I’m so fed up of it all. It’s exhausting. I get a chemo break in just over 2 week’s for 2 week’s. I can’t wait. I should get 4 days of being me again. If my leukaemic rate has dropped enough I’m going to ask for a dose reduction on Monday. It hasn’t dropped as fast as my consultant would like though to date. 

I’m the joys of spring today... at least I have a tan. And this makes me happy. 

Started thinking about another tattoo.... an elephant. To remind me to be strong. They are my spirit animal. I love them so much. Always have done. 

With love and hope. Always hope. Even if it’s whinging hope. 

XxX

I’m still here

I haven’t written in ages. So many times I’ve had sentences float in to my head but I haven’t sat down and typed. Might be because I now blog for an American site so use up a fair amount of my writing on that. I have to write original stuff for them, which is fine, I just feel I have neglected this is in a while. 

I don’t even know where to start. I gave up drinking 10 years ago today. I never thought it would be a permanent stop. I was only going to have a pause over the summer to let my liver have a break and start again after 3 months. And then 3 months turned into a year, and a year turned into 10. I don’t miss drinking. Well. Sometimes I do. But I think I can count the number of times I’ve *really* wanted a drink on one hand. 

I’m so much better without it. I could be a horrible person with it. I haven’t started again as I can’t trust myself. And that’s not good. I know my last reference point wasn’t ‘normal’. 23. A student. Recently diagnosed and drinking to cope. Not that I knew that at the time. I’m happier without it. Even though people think I’m boring because I don’t drink. 

That’s their shit, not mine. I can be just as ridiculous sober as I was drunk, but know I won’t fly off the handle, or get immediate memory blanks or get the shame. 

Back at the hospital tomorrow. It’s my second 4 weekly visit in a row. My liver is under control and the ‘roid rash’ has gone. But. Chemo plague is spreading onto my face from my neck. Not happy about that. 

AND I CAN SUNBATHE!!!! For the first time in 10 YEARS!!!!! Bosutabib doesn’t fuck with the melanin cells so I can once again go brown and not just burn. I don’t have to worry about being outside. It is AMAZING! I still wear factor 30 though. People who burn are fucking idiots and there is no excuse. 

I should be getting the new drug in 4 week’s. I think it’s spelt Asciminib. The hospital have allowed me compassionate use. I’ve asked my consultant if it also impacts on melanin production. I really don’t want to have to give up the sun again. 

I give up so much. 

I’ve started doing home exercises again as I’m fed up of being so critical about my body. I can’t go running because of low energy, so I’m making myself do them. Managed 3 times a week for 3 week’s so far. 

Get weighed tomorrow.....

I also don’t have the dog as much which is very upsetting for me. Change. I hate it. Especially when it’s sudden. I have made a real effort to keep up with walking lots and most days I managed to get 10,000 steps. It’s so much easier when it’s sunny and I can be in it. 

I’ve just read my last post to see where I was. I’m much better than then. Still have my blips. I’ve been able to process what I wrote about then. It sits easier. And then I always have constant drama of one sort or another to occupy me.... friends and family are really beginning to clock that everything I do is complicated. Nothing is ever simple... 

I want to write about one complication. Well. That’s not the right word to use. I don’t know what is. Maby I will one day. I don’t know. My usual car crash involving men. Don’t think I’m there yet to put it on the Internet. Still hoping. Not sure I should. Push me pull you. Words say one thing. Actions say another. What do I believe? So I carry on. One day at a time and see what happens. 

I think I’m ok though. 

Haven’t cried this week, so it can’t be that bad. 

So to bed I need to go. My eyes are heavy and closing. I feel this is a bit of a nothing post. But I wanted to write. I’m still here. Still getting out of bed every day. Still doing my best. More news tomorrow. I’m going to ask if I can have a treatment break before starting the new drug. I hope my consultant says yes. 

Always hope.