Monday 30 October 2017

Heavy heart

I don't really know where to start. Fatigue. Needing 11 hours sleep and exhausted by lunchtime. Pain. Nausea. Sounds a lot like early pregnancy. Except I don't get a baby at the end of it. Hopefully one day. Hope. 

I can't even get the words out. I am so fucking fed up of it all. 

Interferon. I have renamed it 'interfering in my life fucking shit wank pile of drugs'. So that sums it up really. 

An application is being made to see if I can access an even 'nicer' version. I will know in about two weeks. I will also know if my leukaemic rate has gone up more or settled down in two weeks. 

If it has gone up and I get access to the 'nicer' one I will try that. If it's gone up and I don't get access I go back to Bosutinib with steroids for my liver.

I feel I don't have the right to whinge. So many are going through so much worse at the moment. 

I've lost me again and I hate feeling like this. 

I have two more injections left of this interferon. Back down to 10 days apart instead of 7 and then a week off has been agreed. As a birthday present from my consultant. 

Another birthday looming. I don't care about my age. I don't look, dress or act nearly 33. I am acutely aware I am still single. On my own. And all my friends are in very different stages of their lives. It's so wonderful with weddings and happiness and puppies and then no doubt babies. I do feel left out. 4 out of 5 of my core unit are also no longer in london. And with all this shit going on I am feeling it. I miss them so much. I'm floundering slightly. Not connected. Alone. 

But I have others. I have my family. I have so much. 

I just wish I also had my life. 

And so with a heavy heart today. My heart aches for so many at the moment. And for me. Not sure how long it can go on for like this. 

2 more injections. A check up. And then Christmas. I just need to get to Christmas and some proper time off. At least 2 weeks. I need it. Haven't had that since last Christmas. I will be ok. I will bounce back. It will all be alright. 

It's just a bit shit at the moment. 

With love and hope. Without that. There is nothing. 
XxX

3 comments:

  1. All I can give you is a virtual hug. x

    ReplyDelete
  2. Can we be in touch? I’ve been diagnosed for almost 11 years in December 21st., at the age of 12, and I’m 24 now. I’m just barely reaching out to find support and learn anything and everything I can.
    awardsyntek@gmail.com
    If you don’t mind, shoot me and email. I would love to keep in touch with someone dealing with the same things as me. ☺️

    ReplyDelete