Bloodwise Ambassador Katie Ruane
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Thoughts and my Cancer on Board badge

Bloodwise Ambassador Katie Ruane
Posted by
15 May 2016

My latest check up, on-line dating 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.  Work up irritated, felt fat, was weighed, didn’t like what the scales said and my consultant wasn’t there.  So that wasn’t a great hospital check up.  I’ve been processing and reflecting on my appointment and I think the reason it irriated 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 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..  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 and 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 then.  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 about.   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 online dating again which is definitely adding to the meh.  Boys.  Don’t ‘like’ someone on an app when you can’t talk to the girl unless she messages you first and the IGNORE HER! Ok, ignore me.  So much game playing.  It does my 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 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 exhausted.  Ridiculous.

Anyways, the ups.  Going to Bloodwise 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 rubbish 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  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 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

Comments

17.05.2016

Hi Katie.

Interesting to hear about your appointment. I have been told the same thing regarding trials. I am currently on 100mg Bosutinb (1/5th dose) and have been trialing breaks also. 

I have suffered from fatigue but main problems are pain, from doing nothing but the mildest of movement. Have you had problems with pain? Things got so bad on Imatinib I have tried all TKI's and now discussing transplant. 

Take care.

JP

 

 

 

Lizzie Goates
20.05.2016

Hi Katie, thank you always for the fantastic blogs. I can completely understand not wanting to move back home after making a life for yourself in London and doing so well with your career as well, as you said though it is nice to have that option and have time to think it through as well. I am delighted to hear about the reaction you've had toward the badge! I thought it was brilliant when I saw you in the office and I am really glad it is working. Thanks for your kinds words also toward Bloodwise, really appreciated! Two other things, you felt fat!?...you just ran a marathon! Dispel this thought immediately and also with online dating, don’t worry about some of the idiots on there, I genuinely have friends who have met their now husbands through it, so you never know... Hope to see you soon, keep in touch take care Lizzie 

03.08.2016

Consultants can be pretty crap sometimes.  My current one has the bedside manner of Dr Harold Shipman.  I was on 400mg of Glivec for 6 years and for the last year i've been on 300mg.  I've been undetectable for the last 6 years.  My BCR-ABL is always 0.000 or 0.0001.  With such results i should have been on a trial ages ago.  He's done nothing to progress things for me.  What i can do though is stop treatment voluntarily and be monitored every month instead of every six.  This is something i will be discussing at my next appointment in September.  My side effects are pretty mild compared to others but it would be great to have my energy levels back to the old days.  Ah happy days.
The thing i've learned over the years is consultants aren't the one in control.  We are.  We can dictate how things are going to be. 

Good luck with the dating.  I never did online dating but had my fair share of blin dates over the years.  Not only did i wish i were blind but deaf too.  It sure is an adventure.

 

Take care and all the best with your next check up.

Andy.x