Thursday, 3 August 2017

Still Here

I've been meaning to write for weeks. I know there are those who read this who want to know how I am. My lovely Bloodwise ambassador lot. But I haven't had the headspace. Or rather. If I'm being honest. I haven't given myself the headspace. 

It's been a rough few weeks. Last week was fucking awful. Really bad fatigue came out of nowhere and it was like a fucking massive punch in the face. And Bosutinib was meant to be better. According to my notes, in 2015 is was better. Why isn't it better. 

I wonder if my body has just had enough. 10 and a half years of metabolising chemotherapy. And it's fed up of it. Exhausted. Fucked. Not ok the inside but ok on the outside. Still got my hair. Everyone telling me how good I look. Not fucking helpful when I feel fucking horrific. Yes it's great I don't look how I feel. Brilliant. Wonderful. But then. I don't want to look how I feel. No one would come anywhere near me. 

So my consultant. That wonderful person who is trying to sort me out. Had so much hope in her face when she asked me a week and a half ago how I felt. And her struggling to find a solution when I said. 'Tired'. 

So I'm back again on Monday. I've been on Bosutinib for, actually I can't remember. I think it will be four or five weeks on Monday. And I feel it. I've also been ill again. Exhausted. I need a break. I can't afford to go on holiday. To the sunshine. To somewhere beautiful where I can take photos of the sea and sunsets and my legs on a sun lounger in a bikini. I can't really afford my rent. It's a struggle to pay. And I chose to live on my own. Because I have to go to bed so early. I need quiet. I can't have my life and sleep disrupted by flatmates who don't understand. Who think being loud until 11pm is fine because 7 hours sleep is loads. I'm self-employed. Landlords also don't like that. Doesn't matter that I always manage to pay...

So back to the hospital I go on Monday. Looks like I'll be trying pegylated interferon. The new version of interferon because the old one was so fucking horrific. I'm nervous. Not going to lie. You inject it so I can't stop it after a couple of days if it's awful. It's there for 3 weeks. And half life's of drugs mean fuck all with my body. Technically I should feel fine after a couple of days of stopping the oral chemo's but it takes around 2 weeks. 

Apparently pregnant women feel fine with the interferon.....

And I was asked. 'So when would you want to do the transplant?'  

Do I? Do I really? I don't know. I have a life. Well. Sort of. 

2 people I knew died this week. Found out about both on the same day. 

One was a tragic accident. The other cancer. 

And I'm still here. 


Do I want to risk this for a transplant? It might not work. I might be worse. It could kill me. Is it worth it? At what point do I. Fuck. I can't even think of the words to express what's going on in my head. 

I vaguely remember how I felt when I had my chemo break. I felt positive about the transplant. Like I could do it. I'd smash it. I'd be fine. I'd get my life back. 

And today? Well today I guess I should just be happy I'm alive. 

Or should I? At what point do I say no. No. This is not enough. This is not a life. This is not how it's meant to be.  I am not meant to be exhausted all the time. I am not meant to be miserable. I am not meant to have cancer. I am not meant to scare men away with being honest about how I feel. My diagnosis. The fact I don't want to be single. The fact that I want a family. The fact that I live with cancer. The fact that life isn't always a walk in the park and fucking well grow up and realise that I'm not that bad. Even though I don't drink and have cancer. 

And the guilt. Fucking hell the guilt. Too many funerals. Too much death. Why am I alive? And then. The guilt for thinking that everyone who dies gets all this recognition for how amazing they were and how graceful they were in death and how proud they are of how they hard they fought/battled/lost etc etc etc. 

Where is my recognition for getting out of bed every single day no matter how long it takes me or how hard it is. 

And then. I feel like a selfish twat who should be grateful for all I have. 

But then. I have so little compared to

But that's an easy game to play. You can always find someone worse and better of than you. 

I am just so fucking fed up of it all. 

I don't even have any tears left today. I don't have the energy to cry about this all. Again. 

I just want it all to be over. 


  1. Oh darling, stay strong please xx

    1. I have no idea who you are... But I will. Thank you for reading.

  2. XXIII... x. Elizabeth Browning 'De Profundis'

    I praise Thee while my days go on;
    I love Thee while my days go on:
    Through dark and dearth, through fire and frost,
    With emptied arms and treasure lost,
    I thank Thee while my days go on.

  3. Sending healing hugs x

  4. You're still alive because you're a lovely person who does a lot for other people. xx

  5. chin up cancer is a twat and you are a beautiful talented young woman it must be hard wish i could be there for you. hugs