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 fucking knackered, and beginning to have an achy leg
which I know is my body saying chill the fuck 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 fucktard
builders/prison employees who forget that it's a residential area doesn't help
either. I feel a slightly shitty 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 fuck, that was not something I was looking forward to. An
hour is manageable, but two is a pain in the fucking 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 bullshit. 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 (fuck loads) of animosity towards one of my old consultants if
not two..... Realising how unheard I have been makes me really fucking
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 fucking sick of
being patient. I have been very fucking 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 fuck 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 the shit out of 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
