Sunday, 15 May 2016

Thoughts and my Cancer on Board badge

My Lovely Bloglets,

Well, as always a bit of an up and down week.  I was in a foul mood on Thursday.  Woke up irritated, felt fat, was weighed at the hospital, didn't like what the scales said and my consultant wasn't there.  So that wasn't a great  check up.  I've been processing and reflecting on my appointment and I think the reason it fucked me off so much was something the consultant said.  We were talking about how I feel and I asked if there are any trials where people are taken off treatment and kept off it.  There has been one if you take one of the drugs, of course the one I was so intolerant to 9 years ago, and half the trial participants are still chemo free 5 years later.  This is pretty amazing!  The thing that has had a negative impact on me was the the consultant said he didn't see why that couldn't happen to me.  If I took the standard dose for around 6-12 months to really bring down my Leukaemic rate.  I currently take, and struggle with a fifth of the standard dose.  So.  Fuck.  I was talking to my mother about this and she said maybe look at it in terms of if I was to have a stem cell transplant, the time that would take and that I would probably feel like shit but then it would be over.  This is true.  I would have to stop working and move home.  So.   I'm a bit upset that the consultant said this.   I know he was trying to be helpful, but he doesn't know me and how I don’t cope on the drugs….  Anyways.  I’ll talk to my consultant when I'm back in 8 weeks.  I suppose it is good to know.   An option.  I'm just getting my life going again in London and work is beginning to pick up, I don’t really want to have to stop it all and to move back home and be an ill person again.

I've also started on-line dating again which is definitely adding to the meh.  Boys.  Don’t fucking well ‘like’ someone on an app when you can’t talk to the girl unless she messages you first and then IGNORE HER! Ok, ignore me.  So much game playing.  It does my fucking head in.  Grow up and say hello back.  It’s been less than a week.  Let’s see if I make it to 2 weeks…

I suppose those have been the downs. There have been ups this week, 4 I can think of off the top of my head so I should focus on the good outweighing the bad.  It’s so easy to be self-indulgent though, especially as my fatigue has been really fucking awful this week.  Yesterday morning I got up after about 10 hours sleep and 12 hours of being in bed.  Felt good when I woke up.  Felt good when I made breakfast.  Walked a maximum of 8 minutes to the tube to go and meet someone and I felt fucking exhausted.  Ridiculous.

Anyways, the ups.  Going to the Bloodwise office to give my opinion about something on Friday.  I always love going there.  I heart them so much.  Seeing some wonderful twitter friends, even if one of them refuses to follow me on there because I'm shit at twitter according to him….

And the biggest thing this week to make me smile has been my cancer on board badge.  It has been fucking AMAZING!!  I have been offered a seat on every tube I have got on.  This means, well, I can’t actually put into words how amazing this is.  I don’t have to try and sum up the courage to ask someone to stand up or tell myself in my head repeatedly that it’s ok and I will make it to my tube stop if I'm standing.  I wasn't sure what the reaction would be to it because it’s quite small and I am visually user-friendly, but as always, the people of London have been fab.  I have had a few surprised/shocked looks, but no one has questioned it or ignored it.  Well.  Loads have, but there has always been one to ask me if I want to sit.  This takes so much pressure and worry off my travelling around London. 

And today, something that really cheered me up, speaking to my little blonde.  I miss her so much.


So I think that’s about it for today.  Tomorrow is the start of a new week and going to bed earlier than I did last week…

With love and hope,
XXX

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