Well my lovely bloglets,
I had a vague idea about what I was going to blog about
today. Last week I had both an amazing
and an incredibly frustrating check- up.
My Leukaemic rate has dropped from 0.014% to 0.005% which is obviously
utterly amazing. It takes me a massive
step closed to coming off the drugs.
0.000% is now in sight.
Drugs. Well. I will be starting new ones soon. But not the ones my new consultant wanted me
to get because of bureaucratic bullshit basically. The ones I will be starting are called
Nilotinib and the fucker about them is that I have to fast for 2 hours before
and an hour after taking them twice a day.
Not idea for a massive foodie like me who does snack to keep my energy
levels up. However. It may be that I’m not tired with them so don’t
need the snack to pick me up and boost my energy levels to get me through the
afternoon. So it might not be as bad as
I think. Also, apparently they are appetite
suppressants and my current ones are stimulants, so every silver lining right?
I was going to talk about how my old consultant saw me and
didn’t let me see my new one and how furious I was and that she had no idea what
was going on with me and didn’t say about taking a break between drugs etc etc
etc So the next day whilst getting more and more fucked off I remembered I have
my clinical nurse specialists number, so rang her! She spoke to my old consultant who said a
break of two days would be enough and I went very calming mental and said the
my new consultant had okayed 2 weeks because of how long it took me to get over
the effects last year when I had a break.
My old consultant was oblivious to all of this because I haven’t seen
her in a year and she doesn’t treat me as me.
So I told my CNS that I was extremely unhappy with this and much
preferred my new consultants approach.
The CNS said I could take a two week break but to let her know that I
was doing it, and I agreed. 10 minutes
later my new consultant PHONED ME!!!!
And we spoke for about half an hour and got it all sorted. Amazing.
I love her. We agreed how to move
forward together rather being treated like a child and a ‘there there pat your
head’ type of way that I feel my old consultant has. Anyways.
It’s sorted, and I only have 11 more days left of my current chemo. I really hope the next lot are ok. Oh and also, my new consultant said to come
in a week after starting the new drugs because I’m so responsive and sensitive to
them. My old consultant said to come
back in 6 weeks….
I am today feeling this is all a bit irrelevant and I feel
very numb and tearful. A wonderful boy,
he’s only 19, I was lucky enough to hear speaking and meet at last year’s Find
Your Sense of Tumour is dying. He has
been terminal for a while due to late misdiagnosis because of being a teenager
with cancer. You have no idea how often
this story is told. I am so lucky to
have been diagnosed in a day. I saw
yesterday on Facebook that he has said goodbye and thank you and this is
it. To have that courage and dignity at
19 is unbelievable. I don’t really have
words to be honest. He has inspired so
many and whilst he is on his deathbed his wish to raise a million for the
Teenage Cancer Trust is becoming a reality.
I hope he is able to stay with us to see the million mark on his fundraising
page. I feel, I don’t know. I’m sitting here
with tears streaming down my face. I can’t…
there are no words. Upset, guilt, hope,
loss. None of these seem to be able to
explain it. Stephen dying, my living.
Why?
Milo, my little brother, is running the Great Wall of China
Marathon in May for me and for the Teenage Cancer Trust. I have been through shit which may have been
prevented had I had access to a TCT ward.
I didn’t and so my story is how it is.
Milo wants to raise £10,000. So let’s
get that £10,000 to help prevent late diagnosis in another teenager/young adult
so they live the life they deserve. So
the next TYA gets the support they should, consultants who listen, so they are
not alone and isolated in pain with no one hearing. So they get the correct fertility advice. So they smile and have fun. Cancer can be pretty fucking shit. But the Teenage Cancer Trust makes is
bearable. www.justgiving.com/Milo-Ruane1/
With hope,
XXX
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