Well my bloglets,
At the moment I am at the rentals for my
summer holiday. I passed everything this year, thank fuck. I only
scraped through a couple of exams, so need to knuckle down next year as it all
counts towards my final mark. I decided to be a bit of a hermit and come
back to the rentals because it meant that if I wasn't in London spending money,
I could afford to pay rent and bills without getting a job. I also really
needed a break to rest and re-charge which wouldn't have happened if I'd had to
temp/stress about getting temp work etc. I have also been doing uni work
in preparation for next year, and going over the things I scraped through.
So thought having a time out in the country was a good thing to do.
I had my most
recent check up just before coming home. Still weigh the same....bugger.
Platelets were normal for the 3rd time since my diagnosis which is
amazing. I also found out I am the only person who has reacted the way I
did to the first lot of chemo I was on. In a way it explains why my then
consultant ignored how I was feeling and told me that it wasn't so.
However, the fact that I flagged symptoms that I did should have possibly
made her think that maybe, just maybe I was telling the truth.... Or maybe she
forgot I'm an individual and will react differently to others..... moving on,
this post is not a rant about her. I have learnt that she has retired..
Thank fuck is all I have to say about that.
I have also been
told that I am going to be put in a trial which means I could be chemo free in
just over a year. The powers that be have decided to see if people who
are stable with a low Leukaemic rate and have been stable for a while with it,
continue to maintain it when off treatment. So at the end of this year my
chemo dosage with halve and if it continues to be stable, will be on the
lowered dosage for a year and then be taken off the drugs. If the rate
continues to be stable I will be kept off it, even if the magic 0.000% hasn't
been reached.
When I was told
this, I was obviously thrilled. I have now processed the news as it was a
massive shock, and whilst I want to be in the trial, I want to come off the
chemo, I want my life back, I am scared. Not scared about my results, or
living with a stable, minute amount of Leukaemic cells in my system, I know all
that will be fine. I am scared about who I will be. Who am I without the cancer treatment? Who am I once I am no longer the cancer kid? I have lived with the cancer and the treatment for so long, can I
remember who I am with out it? When I come off the chemo, because I will,
I will have been on chemo for 7 years. A quarter of my life. Am I
ready to let go? One the one hand I am utterly desperate to let go and
be treatment free and not to worry about the things I do. Not to have to
plan my time so I can do what I want without exhausting myself. Not having
to worry about the amount of sleep I need every night so I can function.
Not to think if I will be chemo free by the time I want to have a baby
and getting the ok from my consultant to stop treatment for the needed time.
I want to be able to do what I want, when I want without having to get
the yes from the hospital. I went on a uni trip to Germany in July and
had to get my consultant to email my lecturer to say it was fine to go.
Milo was home for a wonderful 10 days and we went to the seaside one day
for a walk and brought some crab back for supper. I hadn't slept well the night
before and went for an hour and a half walk along the beach so was tired when we got back in the evening. When eating
the crab that night, there was the possibility it was off and I didn't know.
Instead of being able to rationalise it, and think that it tasted and
smelt fine, so must be, I sat at the table crying because I couldn't deal with
it. I couldn't function and process that small thing. I am 27 years
old for fuck sake. All of this I don't want in my life any more.
When I come off
the chemo, will I still be special and loved for me rather than the 'special'
me that has been at the forefront for the past 5.75 years and will only be here
for another 1.25 years? It is this that is on my mind at the moment.
With, as always, love,
XxX
