Bloodwise Ambassador Katie Ruane
Posted by

Still waiting

Bloodwise Ambassador Katie Ruane
Posted by
19 Mar 2014

Well my lovely bloglets,

Yesterday was the hospital and in one way it was very positive and disappointing in the other.  Oh, and I haven't put on any weight which is always a relief.

I have lots to say but not sure how to get it out.  I'm also knackered, and beginning to have an achy leg which I know is my body saying chill out and get some sleep.  I seem unable to sleep for the length of time I need to even when I don't have to get up the next day.  I don't know why my body is blocking the much needed sleep.  Maybe I'm stressing about Uni....no doubt I am even thought I have let go a lot.  I am also busy with lots of cancer stuff going on which is really exciting and I want to be doing it, I wouldn't if I didn't, it also takes up energy.  Last night I went to sleep I think around 10.45 and woke up at 6.45.  This was not the plan.  The plan was to sleep until 9 or 10.  Being woken up by a noisy rubbish lorry and the builders/prison employees who forget that it's a residential area doesn't help either.  I feel a slightly irritated letter may be written to the governor soon about this.... Yes they might get to work at 7am but that doesn't mean that I have to be involved with their early morning shouted conversations to each other.

So the hospital.  I had it in my head that yesterday was the last day of my current drugs, but this is not the case.  A new drug has been chosen and I don't have to fast between taking it and eating, thank god, that was not something I was looking forward to.  An hour is manageable, but two is a pain in the arse.  The drugs that the application has been put in for, is like the lot I’m currently on and I take it once a day whenever I like. BUT an application is being made to see if I am allowed to change.  I don't understand this.  I am already on one form of pill chemo, surely if there is the money for this one, there is the money for the other one.  It's not like I will be on both at the same time.  The joys of bureaucratic red tape.  And costing  a lot.  I am aware of this, and feel guilty for it.  I will be emailed in about a week with the result.  I am hoping it will be a yes and then I am told to stop treatment for three weeks before starting the next lot.  My next appointment is in 4 weeks’ time.  My consultant said that I will be taking a break as there is no point starting new drugs still affected by side effects of the current lot.  I am also going to start on the lowest dose and build up to see where my tolerance is, rather than at the highest dose and then reduce to cope with side effects.

At least I am being listened to.  It has taken a very long time for this to happen.  My consultant actually went through all the side effect’s I feel to ask how they are,  I can't remember that happening before.  I may be misremembering of course, and I do have a certain amount (loads) of animosity towards one of my old consultants if not two.....  Realising how unheard I have been makes me really angry actually.  HOPEfully this will never be the case again.

So again, I'm waiting.  I was prepared for change, which I don't like, and it didn't happen.  It will happen, but apparently I need to be more patient.  I am sick of being patient.  I have been very patient. 

I understand why I can't come off the chemo now, even though it's all I want.  I understand it’s amazing that I am in a major molecular response and that I am very sensitive to the drugs.  Being very sensitive also has its downsides.  I do sometimes wonder what would have happened if I had had the bone marrow transplant 7 years ago....

I've been in a bit of a funny mood over the last few days, I think I'm just knackered.  I am however carrying on with the 100 Happy Days project on twitter and Facebook even if sometimes I want to say sod it all, because there is so much to be happy about.  And today, Milo told me he wants to raise money for the Teenage Cancer Trust when he runs the Great Wall of China marathon in May, so people, get prepared to sponsor  him!  That charity....I can't put into words actually what it does and the impact it has.  The impact it has had on my life even though I wasn't on one of their wards has put me on the path I am on now.  Being given a business card at a weekend conference in 2008 has given me the voice that I have in the cancer world.  And for that, well, how can I actually explain what that means to me.  I can't. 

So I should probably go and get ready to go into Uni as I have a patient this afternoon.  Back in 4 weeks if not sooner depending on what’s going on.

With love, hope and happiness (because I am on the whole happy),

XXX