Blood Cancer Awareness Month

Words.  I don’t really know what to write.  I don’t really know why I am doing this other than a need to write.  September is blood cancer awareness month by the way.  Blood cancer.  Two words.  Covers 134 different types of diagnosis.  The 3^rd biggest diagnosis in the UK.  Combined, all the blood cancers together are the 5^th biggest killer in the UK.  By the way.  More than breast or prostate.  Not that you would know that.  Anyways.  This is not a rant about charities who use dirty advertising.

It’s also national CML day this week.  Should probably write about that.  Should probably write something happy and upbeat.  Feels like it’s been a while since I had a happy post.

Interferon.  Last option before I have to decide.

Do I risk my life?  Do I potentially make myself worse?  Do I decide in two weeks that enough is enough.  What is enough?  What should I tolerate?  What is normal?  What should I be able to do each day?  It’s all so fuzzy.  Should every day be this much of an effort?

I don’t know. 

So far Interferon has been pretty rank.  I got it wrong.  I thought it was an injection every 3 weeks.  It's not.  I'm on a half dose weekly injection that I do myself. The first week was fucking awful.  God I felt ill.  Exhausted.  Pain.  Nausea.  And now.  Nearly 3 weeks in?  I still hurt.  Still exhausted.  Still feel a bit sick.  But better than 2 weeks ago.

I’m so fed up of all of this.  A waiting game.  My consultant today.  So hopeful and when I started to list all the side effects I'd been feeling her face fell again.  Apparently, I'm not her heart sink patient.  For this I love her more than words can say.  I trust she was telling me the truth!  And I could hear the question in her voice when she checked I was on half dose.  I think full dose would annihilate me.

I need to go to bed.  I’m at my co-working space and I’m not entirely sure where I’m going to get the energy from to stand up and walk to the train station and get home.  I had 9 hours sleep last night.

Not enough.

So I know I should be happy.  Write upbeat things.  Because who wants to be with someone who feels like I do? Who dares ask how I’m feeling?  Because people don’t actually want to know.  Not really.  Not the reality of how I feel.  We only like to hear good things.  I’m the same.  I’ve basically stopped looking at social media because in all honesty, I couldn’t give a flying fuck about the majority of the things mentioned.  What people are complaining about.  So why should anyone care or read about my shit?

So I sit here.  Writing this.  Knowing that so many don’t actually want to read what I write about.

I have lost a kilo though, so that’s good.

I am so fed up of all of this.  I just want to know.  But no one does.  No one can look into the future.  So I’m back to the hospital in 2 weeks.  I have decided to stay on Interferon for 2 more weeks.  Two injections left.  I hope to fuck it gets better.  This is it.  The end of the road.  Out of choices.  Decide which is best.  Or transplant.  

Stem Cell Transplant.  3 words.  That could be the end of my life.  But.  They could also be the start of my new life.  My life where I can really live.  Or is this a fantasy thought that doesn't exist?  The pot of gold at the end of the rainbow.  I don't know.

So this is my nothing of a blog post.  Ramblings that mean nothing. So many questions and no answers.

I’m not miserable all the time by the way.  I do smile and laugh.  I don’t just whinge in person.  It’s just tough at the moment.

I have an amazing consultant.  An amazing family.  Amazing friends and my Bloodwise gang who are always there.  The Bloodwise Ambassador Facebook group has become a bit of a lifeline.  No judgment.  So much support.  So amazing.  A little plea.  If you haven’t heard of Bloodwise look at their website.  Give some money.  They are why so many of us are alive.

With love and hope,  I still have hope.

XXX