Sunday, 2 July 2017

Lost My Happy

So I know a lot of you have probably been wondering how I’ve been.  A blog with a big bombshell and then a couple of follow up posts on how I’ve been and then silence.

I suppose the reason why is that I’ve been processing and not really wanting to acknowledge or admit what’s happening.  I have realised though, that some of my Bloodwise Ambassador lot want to know what’s happening, have been worrying and that it’s not fair for me to stay silent.  I have another check up tomorrow, so I should update before tomorrow. As fuck knows what’s going to happen.

The last check up.  I was once again completely blindsided.  I went with both parents, for the first time, well, since ever I think!  They were both with me the morning after I was diagnosed and have each come to appointments since, but I don’t think I have had both there in over 10 and a half years.  I had my list of questions written.  I had made up my mind.  Transplant.  I’m going to go for it.  The positives outweigh the risk.  Getting my life back is worth around a year to 18 months out of action.  Being how I was on my treatment break all the time, it’s worth it.  The pain.  The intravenous chemo.  Losing my hair. Moving back home.  Pausing my work.  Pausing my life.  It’s worth it.  To be able to be how I felt on my break all the time, not just for 4 weeks every 2 to 3 years.  It’s worth it.  And then my consultant fucking well backtracked.  Got to try yet more fucking drugs.  Transplant is a last option.  To be on drugs for life is much better.  Fuck Ing Hell.  What the actual fuck?! 

In shock.

Not what I want.

So I have been on Ponatinib and it’s getting worse.  I have lost my motivation.  I’m unhappy.  Days are not good.  Energy is leaving me.  Got to choose what I do.  Got to sleep for 11 hours.  Bye bye life.

If everything is still as it was last check up, tomorrow I decide if I go back to Bosutinib with steroids to stop if from fucking my liver which I really don’t want to do.  My body hated it.  Not good.  Yes I might have felt better.  Not fucking hard compared to being on Dasatinib for a long time. It ruins me.  It all ruins me.  I did feel better on Bosutinib.  I was only on it for 6 weeks and after being completely fucking ruined on Dasatinib ANYTHING would be better.  A punch in the face would be better.  Or injecting myself with Interferon.  I don’t care about injecting myself – I’ve done it before.  I am incredibly worried about Interferon.  It’s a dirty, dirty drug.  So horrible they have re-designed it so it isn’t as bad.  Do I want to inject myself with a drug that will be in my system for THREE WEEKS at a time as a SENSITIVE responder? No. No I fucking don’t.


What do I do.

I am so fucking fed up of it all.  I just want it all to be over.  I can’t live like this for the rest of my life.  I don’t have a life.  I’m 32 and I lost my life years ago.

So for tomorrow I haven’t written any questions.  I have no expectations of how it will be.  I don’t even think I have the energy to get angry or upset.  I’m offered options but I don’t really have them.  I don’t really have a decision to make.  It’s all out of my control.  Maybe I just have to resign myself to the fact that my life is shit.  I lost it when I was 22 and it will never be the same again.

Sometimes I think about jacking it all in and moving back home and just staying there for the rest of my life.

Not a very happy post today.  I have hope and an angel wing tattooed on me to remind me. I feel a bit lost at the moment, wondering where they are….



  1. How Do I Love Thee? (Sonnet 43)
    Elizabeth Barrett Browning, 1806 - 1861

    How do I love thee? Let me count the ways.
    I love thee to the depth and breadth and height
    My soul can reach, when feeling out of sight
    For the ends of being and ideal grace.
    I love thee to the level of every day’s
    Most quiet need, by sun and candle-light.
    I love thee freely, as men strive for right.
    I love thee purely, as they turn from praise.
    I love thee with the passion put to use
    In my old griefs, and with my childhood’s faith.
    I love thee with a love I seemed to lose
    With my lost saints. I love thee with the breath,
    Smiles, tears, of all my life; and, if God choose,
    I shall but love thee better after death... x.

  2. Aah, Katie, my heart goes out to you. EuniceM xx