You
may recall, from my last entry that I was initially given 2 choices (major
surgery or palliative care) but because of the complete awfulness of either
choice or maybe the fact that when I was told these options I said to the
consultants that if there was any experimental drugs out there on the
horizon, anything at all, I would happily be their guinea pig. Well, things
changed and whatever the outcome is to be, good or bad, I have been given a
chance to try new treatments and to help out cancer research.
As
I briefly mentioned before, the following week, when my beautiful wife and I
went back to see the consultants, to give them my decision, I had decided that
the operation was not happening and nature could take its course, Joe, my
consultant introduced me to Emma and Emma threw me a couple of incredibly slim
life lines. These were both to take the
form of kicking my own immune system up the bum, highlighting the tumour and
getting my body to attack the abnormal cells and destroy them.
Yes
please, I thought and I could not wait to get started, however due to the very
simple fact that these new treatments are so new that results are unknown and
trials for the drugs are still to be scheduled for later on this year, my new
consultant has had quite a lot of paperwork to get through, as has the hospital
admin department to allow the global network of researchers to stick this
melanoma drug into my squamous cell tumour. The
other treatment was to involve taking a sample of my blood and a sample of the
tumour and looking at these samples in Southampton at a molecular level,
analyzing the DNA, finding an “overlap” sending that information to California,
for the American scientists to be given the chance to exploit that “overlap”
and build me a bespoke vaccination.
How
lucky am I? It’s very humbling for me to have this world wide network of
professionals, joining forces and doing whatever it is they can to help and the
fact that it only took 6 weeks from the first discussions with me to the first
round of injections and samples taken is completely and totally
understandable. What is also incredibly
humbling is that during those weeks, friends that I have made during my
lifetime both old and new have had the want to do things for me, amazing,
special things that leave me speechless but still able to write about it.
Due
to the very nature of this disease, my life is threatened. Not just mine but my
children’s and wifes lives too. This being known and time being a finite
luxury, logic dictates that for our lives to be enriched, memories need to be
made, good memories of fun times, alas these things can cost and although we
are not broke, there is no surplus either and this is where I became
speechless. Mark, a guy from FRD (the bespoke metal smiths company I worked at
after the last battle against this awful sickness was won), a beautiful man, a
man I used to affectionately shout “BUM, LICKY, LICKY” to and he would shout it
back to me, hated the fact that this had happened to me again, he loathed it
with such a passion I could see it burn in his eyes, so he had to do something
for me. He did a most beautiful thing, he organised a whip round, a collection
and he presented me with an envelope full of cash.
“Here
you go bum licky, make some memories.” He said with a glint in his eye as he
handed it to me. I couldn’t say a thing, I cried, we hugged. I was grateful,
overwhelmed and I still am.
We’ve
started making memories, we went to Cornwall
Also
thanks needs to be given to other, older friends for a gift of a nutri-bullet,
a device that can help me get all the necessary vitamins from fresh fruit,
vegetables and seeds by blending it all up to manageable, swallow-able shakes
to enhance my diet and strengthen my immune system as I need it to be at the
top of its game right now to beat this bodily invader from my tongue.
Feeling
loved and full of strength, the time comes for me to go in to hospital to start
a series of injections, have a chunk of the tumour removed for testing and to
be fitted with a tracheotomy, a tracheal cannula, in case I have a bad reaction
to the injections and either my tongue swells up so big it blocks my air way or
the injections cause the tumour to ooze rancid bloody secretions that I could
drown on. This was ok and I understood
all the reasons for it, no body knew what might happen. They put me under a
general anaesthetic for all of this, thankfully, and it all went well, except
for the discomfort I woke with, having this extra neck piercing and a section
carved from the back of my tongue was quite a lot for me to deal with and I
don’t think they quite realised how many pain killers I had been on daily since
the biopsies were taken just before Christmas and my body had managed to build
up a tolerance to morphine. For two days I suffered in hospital, my emotions
running riot and my coping mechanisms failing. Unable to swallow at all I was
forced to go onto an I.V. drip to get the essential fluids in to my body.
Thursday and my new consultant Emma arrives in the morning to see how well I am
getting on and judging by the look on her face she is not pleased with my
condition, I explain to her via the means of scribbling words in a note book
just how much pain I was in and the simple fact that I had not received
anywhere near the amount of pain relief that I was on before I was admitted to
hospital, before I had gone under the knife and was subjected to even more
discomfort. Within an hour her actions had eased my discomfort considerably,
I.V. morphine, I.V. paracetamol, a fentanyl patch, 60mg codeine and 400mg
ibuprofen and the pain starts to subside, pain meds re-prescribed and it all
becomes a little more manageable. I
start to see clearly and find myself keeping my own medical notes, making my
own chart in my own note book and also using the note book as a means of
keeping a journal a pad for my own ponderings, my own reflections, my thoughts.
I
intend to share these thoughts, here and now.
March 2nd
(Not enough pain meds)
CAN YOU TELL EMMA KING THAT I WANT OFF THIS DRUG TEST AND
GET THIS PLASTIC TUBE OUT OF ME.
I CANT COPE.
I believe after I wrote that
I also wrote on another piece of paper:-
“DO NOT RESUSITATE” and taped it to my chest
as I tried to sleep that night.
March 4th
(Pain meds supplied and being
used, but not quite organised correctly)
I swear if this lump of plastic was not in my wind pipe I
could roll over and clear my own lungs easier just by coughing up the
secretions and spitting them into a bowl. All the nurses have said I have a
good strong cough, but at the moment this bit of tube is restricting my lung
evacuation.
I think I nearly coughed it
out just now.
March 5th
(Getting used to what routine
is needed with medication but not getting it right)
Evening meal was a bland one, minced beef with mash and it
very nearly blew my tongue to pieces, I think it may have been the salt? To
cool down my mouth I used a clean cutlery knife, it was soothing. After my
mouth was soothed I used a torch to look at my tongue, on the side where it
hurt the most I thought I could see the tumour (I couldn’t). For the first time
with just a mirror, a phone torch and my own eyes, I saw cancer (I didn’t,
turns out it was just normal tongue muscle), but why was my breakfast such a
successful affair, my shower, plenty of cups of tea, my lunch which was a fish
pie with cheese sauce and a fruit yoghurt and the tea I shared with my wife and
kids this afternoon in the canteen as we avoided the needy lame one in the bed
opposite to me on the ward, why were all these things so very successful but as
soon as I reached bed 11, bay 3, ward b2, I felt wrong( I was tired and I
needed more meds). Coughing up blood and visibly seeing my foe (so I thought),
has shaken my confidence, I think bad things. I’m not sure if I’ll wake up
tomorrow. I’m ready for that outcome but I don’t think my kids are, Jack, Lilly
and you Bx, I know it is not fair but I think fate gave us that hour in the
canteen today, I think it was waiting for us to be one unit, once more, for me
to see my kids playing in the sun and to have a quiet conversation with my
beautiful wife in what is normally the busiest part of this hotel of the sick.
Thank you fate and thank you Poole hospital, you may not have been able to fix me but
thank you so much for trying, goodnight now, I’ll see you on the other side.
(All I really needed was some
diflam mouth wash before trying to eat!)
March 6th
(Rounding the corner, getting
the hang of things)
Yes. I woke up. Today is Mothers day, I must remember to
text some special mums. Oh that was a weird dream though, the biggest, oldest
tree at the top of Crichel hill, the one the large birds of prey choose to
perch on the one tree that has always been there throughout my life, was being
cut down, by a chainsaw wielding trapeze artist in a force 10 gale! Swing, cut,
swing, cut, swing, cut…. And so on. ? he
was a nice bloke but I have no idea who he was and yet I felt like I trusted
him implicitly. He gave me some of the wood to fit my van out with, how very
bazaar.
March 7th
(Certainly starting to get
used to it all now, except for the nutter opposite me, thank goodness for
bedside curtains and quality headphones)
Dr,’s rounds suggest to me that tomorrow brings a trachea
change, a larger one perhaps? Defiantly round 2 of the injections into my
tongue, apparently it’ll happen under a local anaesthetic this time. I’m not
sure how I feel about that.
(Totally got the hang of my
situation by now, I understand my own pain relief and when I need it, when I
need to nebulize myself and how to change my own dressings. Things are looking
up, I’m eating complete meals too)
I do so hate to be tarnished with the same brush as a lot
of the un-educated inmates here. Mind you, the state of my writing, tidiness,
spelling (word has auto correct, my pen and note pad did not) and punctuation,
I am not surprised. However I am writing to keep my brain active, I am not
submitting an English essay.
It’s not everyone and I am pleased to say that it is not at
all many but when you do get looked down upon and receive some of the
condescending tones it is very disrespectful. Okay so today is March 8th
2016 and I should be in theatre in the next 12 hours, it’s currently 0149 hours
and I have my last cup of tea for a while in front of me, gulp, gulp, gulp, do
I eat a biscuit? Nah, I’ll go hungry, I will have the paracetamol that I saved
from last nights dose just because it makes the Oramorph work better. Ah, yes,
in a while I shall be having ‘round 2’ (ding ding) of an unknown test. It’s not
a drug trial, it’s before they get set up. It’s been a week since the last
series of chemicals were inserted into my tongue and I have to say, as long as
I get the opiates, then I can do really quite well and my tongue has reacted in
a similar way to the radiotherapy I had 3 years and 3 months ago, except this
time, for the moment, I can still taste, chew and swallow as long as I get to
do my pre meal routine. This would be, 30 mins before eating 10mls Oramorph, 15
mins before eating 1000mg paracetamol and a hot cup of tea, 5 – 10 mins before
eating 15mls diflam mouth wash, 5 mins before eating trachea inner tube change
and kettle on again to make another cup of tea to wash the meal down. Then all
I need is about ¾ of an hour to sit and eat, with the kettle still on stand by,
in case I run out of the elixir of life before I finish the platter of
sustenance. Goodnight.
March 8th
(Nil by mouth)
Morning, so you’ve got 4 beds in 1 bay, 1 bed is ‘problem’
bed, calls for the nurses almost as soon as they leave, he presses his button,
the light comes on over his bed and in the corridor outside the bay, the nurses
turn up to his side reset his light, tend to his lame whim, plump his pillow,
tilt his bed up, tilt his bed down, plump another pillow, pass him his water,
take his water away, tilt his T.V. screen up, tilt his T.V. screen down and he
presses his button again. After a whole night of this repetitive activity, you
can start to understand the simple fact he might start to be ignored, I mean,
there is nothing really wrong with him, he is just a needy knob. On the same
bay of 4 beds, you have another guy who has been given a second chance, by the
“luck of the gods”, it’s a slim chance but a chance of survival none the less,
so he will do anything and everything he can to help out the under-funded and
therefore under-staffed NHS with his own care, but (and here is the worse but)
when he is in distress and is really in need of some assistance because of a
medical situation involving a ‘Mount Vesuvius’ of snot and blood erupting from
the under sized BIC biro sticking out from below his chin, he is forced to call
the nurse for help. He presses his button… the light above his bed comes
on…unfortunately the light outside the bay in the corridor is already on…
(courtesy of Mr. Needy-knob) so I wait… all the time getting shorter and
shallower of breath… please hear me nurse… no?... there is just one thing for
it… keep calm… do it yourself… shit, my suction hose for clearing my air way is
on the floor… I know, I’ll make the heart rate monitor flat line, that’ll do
it… oh please help… please check the call alarms?... right, very slow breath
Steve and roll over, I land on the floor like a cat, all fours, with my neck
over the suction hose like some kind of life saving Bond manoeuvre, shchlump
goes the suction pipe as it tries to feed on the crap that was reducing my
breath, fuck I’m good, even if that pipe is now blocked with what looks like a
half fertilised egg solution, at least I can breathe and on the plus side, I’m
very close to my own bottle of Oramorph down here, that’ll do nicely, I check
my own chart and it has been 5 hours I think I’ll help myself to some of that.
7mls and relax. 0711 hrs I wonder when I’ll be in theatre today? Think I’ll
have a nap.
Wow what an eventful day, Round 2 (ding ding) completed and
it was done under local anaesthetic. Arrgghhh scary. The tool was a ¼ inch in
diameter (6mm) and around a foot long (300mm), it had an articulate end and the
ability to do 3 or 4 functions and the operator, Kate, was skillful. Into the
left nostril and traversing my cranial cavities to its required destination,
ground zero, the back of my tongue. Once here the pilot Kate calls for her
‘wing man’ Emma and they with the machine become one, Emma on guidance and
package delivery, Kate on piloting skills and along with Penny for reassurance
(a very worthy task, believe me) and Charles, he was there to take a beating,
the piece of wood for me to bite down on when needed, the team were assembled
and ready to carry out the job at hand; ‘To Stab The Fuck Out Of The Cancer’ in
my tongue and fill it with the Italian chemical. Ok so it wasn’t the most comfortable of
procedures but bless him, it wasn’t the most comfortable of grips that I had on
Charles’s hand, but I wasn’t going to let go, I think it cracked on my second
injection and I watched his face squint and heard his voice rise an octave or
two when he joined Penny in telling me how well I was doing and that all was
going to be okay, “well done Steve, can you relax your hand a bit?” poor boy I
did warn them I have a good grip. Third injection and all is calm, just feels
like trying to staple a leather belt but in order to get the needle in the
right place a bit of suction is required and this multi tool can do that too,
what a fantastic piece of kit, that must be why it is quite a lot fatter than
the other nose scopes and needs two operators and what a good pair they are. I
am forever in their debt. Now it is 2100hrs I’ve eaten sausages, potatoes and
green beans, I’m happy about that and I’m looking forward to tomorrow’s
breakfast.
March 9th
Good morning to Poole hospital, good
news, I get to go home today. A good nights sleep, responding well to the
injections, controlling my own trachea cleaning, convinced all the staff that I
am more than capable of caring for myself and I’ve had a shower, I’m all nice
and fresh and raring to go home. All I have to wait for is the administration
to be signed off plus a shit load of specialist equipment but I feel good. I’ll
feel better at home.
So that is the story till now
really, and as I said before, typing down my darker moments help me to not
dwell on them or for those dark thoughts to keep hold of me, I wont lie I have
good days, I have bad days, I have days where I just want to sleep but I’ld
like to think that’s where my body is just trying to heal because I believe my
immune system can see the cancer now and it is trying its best to beat
it.
If you are still reading this, well done you,
I know there is a lot here, that is mainly because I’ve had a lot to catch up
on, a lot to keep a record of.
This is me Steve Royal doing
what I can for the Cancer researchers.
Have a week.
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