10 / 4 / 2016.
I started this one a couple of days ago but didn’t get much
written down as it all happened oh so quickly.
7/4/16
Should I stay or should I go now? No one actually knows at
this point in time, I thought I was going back home after the general
anaesthetic but the day ward think I’m staying in over night.
As you have guessed, I am here again, my home from home, Poole
hospital for round 5 (ding ding) of the pre-test-trial chemical (try saying
that with a swollen tongue) and this time I’m in for extras too. Yes I get to
have another biopsy or seven and a trachea change, at least I’m getting knocked
out this time so I won’t know about it until it’s done and possibly a few hours
later when my pain receptors wake back up, that’s not something that I’m really
looking forward to, still, it has to be better than round 4 that had some
discomfort to it and I had my big brother with me on that day so I put my brave
face on, the face that says “this is alright really, no problem” but I’m quite sure the grip I had on his hand
probably told a truer story. Fortunately one of the hose lock connectors
joining the syringe to the needle saw fit to rupture and my tongue was saved
from the last 10% to 15% of the chemical, alas our arms were not and both my
brother and I received a short and unexpected shower.
I’ve just been informed that there is zero intention of my
presence being required in this hospital tonight, yeay, and that I am going to
get to try out something new, well new to me, according to the anaesthetist, it
reaches the parts that morphine just can’t quite reach, gabapentin.
One hell of a size of pill though, wasn’t sure if I’d be
able to swallow it, then again it is a pain med so, bottoms up!
Hmmm, why does Mr. Soft of the 1980’s come to mind?
Gosh, this time they’re giving me a ride to theatre on a
flying carpet, that’s nice.
All done, waking up in recovery, in pain, unable to talk (I
was expecting it this time so I’m not freaked out) calmly I sign for some paper
and a pen and upon receipt of said utensils I scrawl “TONGUE PAIN 10/10” and
very shortly after I receive a dose of morphine in my cannula, a short time
passes,
“How is it now?” I’m asked by a nurse.
“7/10” I scribe. I’m given another dose and some more time
goes by.
“And now?”
I shrug, “5/10, when
can I speak?” I write on the page,
“In 10 minutes when we let the balloon down around your
trachea” I am told as the third dose enters the back of my hand.
I wait the ten minutes, in slight distress and true to her
word my voice is given back to me as the cuff is deflated, the next words to
pass my lips is something a lot of you have heard me say before “I need a wee”
the nurse gets me a cardboard bottle, I wee, I relax, I lose 3 hours.
Upon waking, I call my beautiful wife to let her know she
can come and get me and thankfully, she does.
I’m home.
3 Days Later.
I believed that I would be suffering right now like I have
suffered from previous rounds of this treatment. By that I mean I have 3 to 4
days of not getting out of my pyjamas as being unable to eat solids for the
first ¾ of that time makes one rather drowsy, that and the increased morphine
intake of course to combat the extra pain, so the necessity to become clothed
kind of looses its appeal. As for the other reactions to this truly unknown
journey, they involve a temporary increase in collar size, I don’t mean just a
slightly swollen pair of glands, I’m on about a full on no-neck, red-neck type
appearance. Never before have I had a neck that is wider than my head and that
can be lopsided at times too, generally on my right side and generally quite
comical to look at, I would suggest that it would be similar to sticking the
ladies chicken fillets for bras just below my jaw line and this extra
enlargement tends to restrict my head movement. I do take comfort in the
thought that the reason my neck does go like this, like a villain from Dr. Who,
just after treatment is because I believe, this unknown is working, my body can
now “see” the tumour and is doing everything it can to fight it, so of course
it will swell up, it needs room for the boxing ring! Ding, ding.
But this time, round 5, the swelling is less. I like to
think that’s because the tumour is less and the boxing ring doesn’t have to be
as large as before but you have to remember, this is in my mind, no-one has
told me either way what is happening to the size of the cancer but from being
told in January that my time is limited and as long as I’m up to date with my
pain control, those closest to me and myself find it incredibly hard to believe,
that I supposedly now only have 5 – 15 months left, I look and feel too well
for that.
What I have been told about the cancer and what I have seen
with my own eyes is that it is responding to this drug in the same way that the
melanomas do, it’s not a pretty picture and I think it tastes the same as a
zombie would taste, but it’s a good thing. I don’t want to count chickens and I
constantly want to touch wood (f’nar, f’nar), but I’m sure something is
happening and I believe I am going to get the chance to make many, many more
memories with my beautiful family and my beautiful friends, yes, you lot.
Speaking of you lot, an old (and bald), good friend came to
my door yesterday, my old flat mate from an era, a true coming of age time of
my life, the 1990’s where from what I am told, anything and everything that
could be done, was done. I do have some memories of that time but I also have a
lot of blanks, so it must have been good, right? That time of my life made me a
lot of great friends (more than I think I realised) and I am happy to still
call them friends, all of them characters and all of them full of love for “Top
Flat”, 44b. A lot of them are you guys reading this now and I’m quite sure you
know exactly what I mean. (It also seems quite apt that as I type this the
radio is playing “Champagne Supernova”)
When he arrived at my door, I was nicely surprised as I have
not seen him for what feels like too long a time, which is mainly my own fault
for since living out here in my little patch of Dorset as a husband and dutiful
father, I have kept myself away from the temptations that caused the blanks in
my mind from that time, but I was worried for him as I could see that all was
not right, he was crying. I ushered him away from my children’s prying eyes and
questions, to ask my own question of him, to see if he was ok, his own family
has gone through the cancer mill and I feared the worse for him. He was fine,
but he was burdened with the momentous task of carrying and delivering a
MASSIVE amount of love from a collective of beautiful, beautiful people which
left me speechless (in a good way, not because my trachea was inflated).
You know what you have done for me, but those of you that
don’t know, this collective of beautiful characters have organised themselves
to touch me emotionally, to help me and my family make more wonderful memories
through that most appreciative mediums, a collection of love, that if I didn’t
have this tube and open wound in my neck right now limiting my excursions to my
own garden or out to the hospital, I would be out there now spending that love
and having laughs with my kin.
I am so overwhelmed by the amount of love given to me from
this collective and from the guys at my old place of work and there is a chance
that I fear I may feel guilty if I survive, but I’ll get over that as I do
intend to keep doing everything I can to help my chances to beat this awful
disease.
My beautiful wife is so very grateful too for these acts of
true kindness, love and support you have shown us through this tough time and
she has a plan (many birds with one stone), my daughter loves the look of the
Pirates of the Caribbean movies and my son wants to go on “one of those,
floating hotels”. So, although our
family holidays have always been fun, like Cornwall earlier this year and
caravanning the years before, they have always been self catering (Steve
catering), this time she wants us to be pampered and as soon as my neck is
heeled without trachea, apparently we’re going on a Family Caribbean Cruise and
your love that you have sent to me via Roy and Mark is so going to make this
happen.
Thank you all for your skills in memory making, it means so
very, very much to me. I will be inviting you all over to my patch of Dorset
this summer, my own little bar does have a function room now so we’ll have to
use it and maybe make some more memories together. Here’s to hoping the sun
doth shine.
This is me, Steve Royal, remembering parties at Top Flat,
bums through windows, indoor rifle ranges and wardrobes that just got in the
way. Love you all you amazing people, keep doing what you do, love each other,
keep smiling and have a week.
