We're Home.
I know it's been a while since I've been here and this is gonna be breif.
With the love that had been showed to me and my family, we spent it on a Cruise to Norway.
A chance for those all so important memories to be made. I have tried to upload a message to you all here by means of a video, alas it was too big to post on this blog so I have had to use the face book to post it upon.
No doubt you will also be able view some of the many photos that were taken by myself and the family on either mine or my beautiful wifes profile pages as soon as I go through the many forms of media that memories can be captured on these days.
As for me and my experimental treatment, it has stopped working, in fact it has possibly started to have a negative effect. I apologise now for my slurred speech on the video, it's becomming harder to communicate vocally ( and beleive me I soo wished it was due to alcohol, but that has been off the menu since last summer). I'm off to London next week to see more cancer specialists at the Marsden Hospital to see if they have any other experiments to try out.
this is me, Steve Royal, happy to of had the chance to make happy memories.
Have a week.
Saturday, 16 July 2016
Wednesday, 4 May 2016
4/5/2016
Well this was unexpected.
I was doing so well,
my trachea accessory, the tube, came out so perfectly last Friday and the hole
in my neck is healing really well, so the district nurses tell me, I personally
have not yet seen the stoma site, I thought I should wait until it had closed
up a little first before I go examining another scar on my body. My ability to
sleep had greatly improved too, being able to turn your head from side to side,
without having something sticking out the front of your neck waiting to collide
with the edge of your pillow and making you cough, is something you tend to
take for granted. It’s such a relief to be free from it however, there was
mention of it earlier making a re-appearance but that was a worse case
scenario.
So why am I here?
Yesterday I had a moment where all was not right, I felt faint at some point in
the afternoon and I think I passed out. Fortunately I had the foresight to get
to my bed. I came around over an hour later and still I felt wrong
somehow. Medication, food, drink and
more medication followed but this time the relief from pain was all over far
too soon and I found myself requiring more meds before my own medical chart
would let me. (Yes, that’s right, my own medical chart. I’m not sure if it’s
the engineer brain, my need to be logical or perhaps the fact that many believe
I’m on the spectrum that made it happen, but I found myself making my own
bespoke charts up to fill in daily so that I can keep track of my pain level,
meds, blood pressure (I bought a machine), pulse, temperature, drinks, food,
wee’s and pooh’s (utilizing the Bristol stool chart too) as I am finding it a
lot harder to remember when all these things have been done or need doing.)
This meant I would be waiting for the time when I could have more drugs, nearly
2 hours waiting, I know it’s not long but when the chart reads a pain score of
12 out of 10 for this long, you really do run out of things to do to try and
keep your mind from it and invariably you tend to crack, break down and cry.
Time arrives for the next dose and I eagerly consume the medicine as if taking
it quickly is going to make it work quickly, 20 minutes pass and I feel the
effects creep in, slowly and trying not to move (as I believe in this tender
state of mind that moving somehow reduces the affect fullness of the dose) I
slip off to sleep hoping that the medicines will last until the next allotted
dosage time. Alas this was not to be and in the wee small hours of the morning
I’m tossing and turning, full of pain and again a good 2 hours short of where I
need to be. This is how all of today continued, yet the straw that broke this
camels back was the inability to manoeuvre this evenings meal around between my
teeth in that necessary action we like to call chewing and no chewing means no
proper eating. This too, is not good.
What is good is that
I’ve just had my first I.V. antibiotics so let’s see how this very night pans
out. It’s 0100hrs and I’m off for a wee, (I’ll tick the box on my chart) then
I’ll try to sleep. See you in the morning.
Morning may the forth be with you, and me.
I guess that today I shall be mostly spending the day
waiting. Waiting for my drip to be removed, waiting for the doctors to come
round, waiting for the pharmacy to dish out some antibiotics for me to take
home and waiting to be told I can go home. Then I’ll be waiting for a lift
home. There is enough people in this country waiting for the NHS to sort them
out and I feel like I am taking up the space that somebody else more in need
should have. After all, there is not that much wrong with me.
This is me Steve Royal, on a slight set back waiting to get
home and cut the grass.
Have a week.
Wednesday, 27 April 2016
27/04/2016
I think that it is probably about time, to make a little
entry into this ‘ere blog.
It has always been my intention to use this keyboard as my
sounding board for when things get shitty on my journey battling this awful
disease. It has been a very good tool for me to use when I’m down, real low. It has managed to take the bad thoughts from
my head and stop me from dwelling on them and this has been an excellent way
for me to keep positive, even if the content of my entries, on some occasions,
have sounded less than great.
This content is not going to be “less than great”.
It had been a while
since I was last down at the hospital, so yesterday, I had a couple of
appointments down there, the first was with a magnetic resonance imaging suite
(my last one of these was March the 1st) and the second was with
Emma, my consultant to discuss the results of the first appointment and what
course my ground breaking, experimental treatment should take next.
As she entered the
consultation room she caught me in mid flow of one of my, oh too common,
trachea induced coughing fits, as these can be so easily brought on, a change
of temperature from room to room, a laugh that catches you off guard, crawling
under your van to fit a set of fog lights or walking past a group of beautiful
people that all choose their own “off the shelf” scents to adorn themselves
with, are all ways to make me unable to speak and bring on quite uncomfortable
coughing. The only way I have found to
get over this is to take the trachea all apart, give it all a clean and breathe
slowly.
So there I am with
half disassembled plastic neck jewellery, red faced and teary eyes, standing
over a sink with snot dribbling out of my neck all stringy, stretching from my
doss-rag to the plug hole, I am most definitely not looking my best, but I was
glad there was a sink in that room or it would have been a lot messier. Still, Emma could see I was in control of the
situation and she just about gave me enough time to finish my pipe cleaning
before she tells me about the MRI results.
“It looks like the
tumour has not got any bigger since your last MRI. I’ve looked at your last 3
MRI’s this morning and from the end of December to the Beginning of March there
was massive growth in the size of the tumour, but between March till today
there is no sign of growth. I’m really happy about this. This is a good thing.
I’ve had a fellow consultant look at the scans too and he agrees, the tumour
has stopped growing.”
She said all this
with quite a large smile on her face and I could see she was genuinely happy
about these results.
I too am happy about
this, I’m not out of the woods, but before I went to Poole on Tuesday I thought
something had changed, I feel different, I have a bit more va-va-voom, I have
been able to do slightly more physically demanding tasks, rather than just play
with my Lego and I have been getting through a plate of food in 20mins and not
the ¾ of an hour it was taking. This is all good things. Plus I have been able
to reduce my daily morphine intake by about two thirds.
So what does happen
now?
Well, also during
this appointment, Emma wanted to look at ground zero with her own eyes (via the
regular, smaller nose scope) to see how it was reacting to this chemical and my
bodies own immune system now attacking it, as she could see on the scan there
was a “large area” of necrosis in my tongue, this is dead tumour ( another good
thing) and as there is no sign of my tongue about to start bleeding out, she
has agreed to my request of having this trachea removed, whoop whoop. This will
increase my quality of life as I will be able to get out and about ( once I am
healed, as I do not want to get an infection there, that would be a right pain
in the neck! ) and we can book our family holiday, oh yes, major memory making.
As concerns
continuing treatment, She will be putting in a request for more of the same
drug from the Italians for me as there is still some parts of this tumour that
could do with being highlighted to my immune system, so that it might attack it
some more.
And who knows what that might mean.
There you have it, a little round up of how things are, so
hurry up summer sunshine, I want to have a garden party or two.
This is me Steve Royal full of good things.
Have a week.
Sunday, 10 April 2016
10/4/2016
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.
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.
Tuesday, 22 March 2016
22-03-2016
Happy Birthday.
Feeling quite good really, I’ve also got a reprieve for a
week, by that I mean that I don’t have to go in for the injections today and
after the last round, last Tuesday, that suits me fine. As I responded, or should I say, my tongue
responded well to the last round of treatment and by that I mean it became
quite the bulging muscle inside my neck, so bloated in fact that the ability to
swallow came to be a most unpleasant task (quite impossible really) but
thankfully, just for a couple of days. This did have a knock on effect to my
health, strength and weight, all things necessary to keep my immune system in
the right condition, to fight this lump inside me and now I can feed that
animal again, to give it, its strength.
Happy Days.
I still have lots of work to do though and I know I can do
it, especially when I receive gifts on a day like today such as a slogan
embossed t-shirt (from the other Royal Family), sporting the words “Wake Up,
Kick Butt, Repeat.” I know that others know that I can do it too.
I also received a joint gift of the biggest Technical Lego
Truck ever (it’s not like I’m just a big kid or nuffin) my work load stacks in
my favour, by that I mean for me to have things to do, assignments to
undertake, is like a form of therapy really. It keeps me sane, well as sane as
I ever was, and that’s a good thing. It puts the smile on my face and the pain
to the back of my mind. We all know how strong our minds are and with the power
in our minds, we can accomplish anything, as I intend to do.
So this is me, on my birthday, Steve Royal, Daddy or Father.
Aged 43 and no quarters.
Have a week you bootiful people.
Wednesday, 16 March 2016
14/03/2016
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.
Saturday, 12 March 2016
12/03/2016
11/03/2016.
Well, i'm home.
I have been keeping it a little quiet. I myself have been keeping quiet too, but as I understand it, my beautiful wife has been keeping you informed via the Book of Face, which I do intend to look at after I have written this. I'm doing it like this, just so that I can be lazy, I only want to explain what has been going on with me and the world of the cancer, the once.
Here goes.
So at christmas I was told it was back. In January I was told that it was far more serious than they had liked. My trusted consultant, the man whom I have the most faith and confidence with, Joe, called me in to one of the examination rooms. He looked pale. He wasn't alone.
"Steve, I am sorry. This is shit. Because of the shape of the tumour and how it has reformed the outlook is bleak, radiotherapy is not an option due to the amount you have had before."
I was silent.
"You have two choices now, It is either a massive, severe operation or palliative care."
How severe? was the question, but I cant remember who asked it. The response was scary but masked by medical jargon, I didn't realise how scary it was until I researched it at home.
"Total Glossectomy, Total Larengectomy and a complete neck dissection."
Fuck.( Researching this indicated that I would no longer be able to use my mouth for anything. Never eating, never drinking, never speaking and never breathing through it again, ever.)
"Otherwise, how long have I got?" I managed to ask through gritted teeth and watery eyes.
"Worse case senario, 8months. Best case, 18months, with chemo that could be nearly 22months to 2 years." he was saddend to say.
"I'll give you and your wife a moment to talk. Can we clear the room ? " he asked the other staff and they left.
Rebecca and I just looked at each other.Without having to say it, we both knew that I would not be
having the opperation, there was no way I could live like that, I am too busy a person to be a burden and my beautiful wife has enough problems with her own personal medical situation without her having to become my carer.
This was never the plan, the plan was for me, the man that married her, to be the one that does the caring, and I was ready for that, for us to enjoy our senior years together and for me to do what ever I could to keep us going but I was to be the physically strong partner, not the silent blob on the couch, no way could I become that.
As before with this blog, I have found myself writing things down on all manner of different forms of media, and all throughout the tests and meetings running up to the time I was told the cancer
had returned I had been keeping track of my emotions on my tablet pc. The next few extracts are quite raw and I have chosen to share them. They are un-edited and written during a time of unknowns.They cover quite a long period of time, I believe they started mid November 2015 and they carry on to the begining of this month and yes, some of the information has been repeated, I guess using different forms of media and copious amounts of opiates, I tend to forget where I'm at.
Blog from Tablet PC;
I am coming to terms with my own mortality.
It's been quite a while now since I've needed to do this and to do this I need to do.
Next tuesday sees me going back to Poole for a visit to the green clinic and im scared. Again. I'm in pain with my throat or is it my tounge? It hurts to eat, I have a headache that I can no longer ignore, I am feeling really week and full of fatigue my weight is steady at 9and a half stone, my tinnatus has returned with furious anger and the psoriasis on my leg has reappeared. What does that have to do with it? Well, the chemo that I had to have 3 years ago cleared that up so in my
head that means psoriasis has something to do with the cancer.
I'm letting people down, important people whom I love more than I thought possible but if you are a husband, wife or parent, you know just how much love is possible. Ahh, just take another codeine that'll help with the pain, for now. It does make me wonder how many more I would need to
take the pain away for ever. I looked into it, apparently it's about 30 and as long as I wash it down with the oramorph I have at home I should just fall asleep...
Wimp. Thats just being lazy.
I think I want Joe to find something next week, to explain why I feel this way. So I know that it is all not just in my head. My head has known for a while now that I might not make 45, don't ask me how, that is just the way it seems.
3.12.15
So the trip continues. I'm sat in a waiting room waiting for my turn. Joe did see something, he's not sure what so I will be staying still for half an hour while the MRI scanner checks me out but I
wont know anything until a couple of weeks time, when I'll be seeing him next. In the mean time, before then I shall be back here again next week, for a video swallow test to see why I choke on three quarters of the food I eat, I wonder whats on the menu? thats on Tuesday, on Thursday I'll be seeing the look on a hygienist's face when she is tasked with the cleaning of the pirates cove, that my mouth has become, 3ish years of saliva gland obuse has taken its toll on my oral cavity, and I guess you
could say that my mouth is not the prettiest environment to be in, and I would not protest.
Between times, l have picked up my own tools again, yeay! Thats right, Royal Electrical Services has started trading, so happy to be my own boss again, don't get me wrong, working for Frank was great, made alot of good friends there and not any enemies, I think...
Well I had the MRI and now its Tuesday, I'm about to have a video xray... ohh this is exciting. What is not exciting is having to go to a funeral after here, good ol ' uncle Ted, Teddy-Edward as I used to very affectionately call him when I was younger, 88 thats a bloody good innings if you ask me, love you Ted, cheers.
So apparantly the menu is not great, bland and weird textures so I have just been informed, I guess I'll be having a dirty McDonald's when I leave here, if I have time before we celebrate the life of a guy whom I, as a kid would ride in his tractor and just like Nizloppi the tool box would rattle
my bum like berserk.
Just finished the video xray, ewww, gross. That contrast tasted a bit rank, sweet and rank and its too early for Maccy Dee's so I'm going for a breaky at the hospital canteen, wish me luck, at least I'm in the right place if I do choke.
Parked in the car park at Poole crematorium and I wonder, what would be said at my eulogy? "He was a lovable chap happy to help out others, he always looked for the best in people and he believed that he could help bring the best out in people." Maybe? It's hard to know what others really think about you and they can only really say it after you're dead so you can't answer them back. That being the case it would be more likely they would say, "He was a cunt." Totally possible I have been called this from time to time and by the wife more than most although Jody at FRD would come a close 2nd. They may say the usual niceties,"it's always the good ones that go too soon" or they may tell the truth "he battaled with his own addictions'."who knows?...
...I won't.
From what I remember I found Teddy-Edwards cremation to be far more emotional than I expected. I couldn't help but think about my self in that box. How selfish is that? But that was last week, today it's different. Today I am waiting here in green clinic. Here to see Joe, or one of the team.
Hopefully just one of the team, if there is more than one in the room when I walk in I think I might shit. Eeww, that would be nasty. All squished in my particularly old boxer shorts that I adorned myself with this very morning, they've gotten that old that I believe if you tried to give me a wedgie with these on you would end up with the waistband in your hand.
Oo ooh,
I was just called in, but, now I'm back waiting wrong consultant, didn't think I knew the name of him. While I was in there however I had a quick chat with the lady that filmed my throat swallowing last week, it might be in my head, but she seemed overly concerned that I'm in need of more calories and she has a worried expression on her face.
Turns out she knew more than she was trying not to let on. Went in to see the correct consultant and he didn't arrive alone. Shit. Accompanying him was Karen, a cool sympathetically faced lady and two red shirt consultants. We greet each other take our seats and the head of Joe's department
sits down within my space and reasureingly places his hands on my knees.
"There is a questionable, suspicious mass on the back of your tounge. I am quite sure your cancer has returned. We need you to have a biopsy and to have a good look and feel down in your throat."
My next visit to Poole is on Friday 7.15 am for day surgery, a biopsy.
So I had the biopsy, in fact I had 7 and I've been unable to eat anything substantial since. Its now Monday the 21st of December tomorrow I'll be back to Poole to have a peg tube fitted then in a weeks time they will tell me what the plan is.
(A break from Tablet PC ramblings)
I never did have the peg tube re-installed, I went down to the hospital to get it fitted but I managed to convince them that it was not necessary as that day was the first day I had been able to swallow anything since the biopsys 4 days previous and we had no idea what the plan was going to be, I didn't want any extra discomfort and that all I needed really was some easy to swallow food, Fortisips. They agreed and gave me around 50 bottles of the stuff, I thanked them and was able to leave the hospital much sooner than I expected, unfortunatly for me this ment that my prearranged lift home was hours away. I know, I thought, I'll catch the bus. I left the hospital and walked up to the bus stop, oh not this bus stop, it doesn't go to Wimborne, I'll go to the next one... Oh, not this stop either, I'll go
on to the next...
When I got to Fleetsbridge carrying my lunch bottles I had worked up a sweat, I stopped at the next bus stop and it cleary said next bus to Wimborne 4 mins, phew, enough time for a Fortisip, as I was quite hungry and some water, my heart was beating hard, good god I'm unfit I thought, forgetting I've got cancer or the fact that I had not eaten anything since last week! Bus arrived, I get on, "to Wimborne Square please." "Sorry," said the driver "I only go as far as Broadstone." I get off again.
Reluctantly I use my phone to call someone for help, my dad, I didn't want him to get me, I just wanted a phone number of a cabbie friend of his, I knew the guy lived close to Darbys Corner and my logical brain thought it would make perfect sense for this guy to pick me up from Fleetsbridge and get me to Wimborne, also it shouldn't cost me too much. Alas, that one time I decide to call him, true to form I'm let down, no answer was the reply. I decide in my stupid state of mind to try and walk to Wimborne.
Past Tesco's and up the hill to Burger King, on the other side of the road I see an old friend in her van, feeling really quite tired now I drop one of my bags and try to gain her attention by waving
like some lunatic, alas she dosn't see me. Onwards towards Gravel Hill, I try to keep a good pace, all the time telling myself I can do this, yet all the time I am becomming weaker and weaker.
Its on Gravel Hill that I hit the wall. By now I'm close to my nephews school and I am physically drained, emotionally screwed and all I felt like doing was stepping out in front of a lorry. I collapse against a lamp post, sweat running off my head, panting hard but not getting any oxygen into my body. I feel myself about to fall to the floor and I hear voices calling my name...
"Steve? Steve. ... STEVE! Are you ok?"
I look around, and there on the side of the road with his hazard lights flashing was Justin with his beautiful wife Sarah getting out of his car comming to my rescue. These guys have children the same ages as ours and they go to the same schools as ours and they were out for the day with their kids and just happened to be in the right place at the right time for me, I'm not sure they realise how perfect their timing was.
I will forever be in their debt. Thankyou for that lift to Wimborne.
After an hours rest, I calmed down and all was ok once more.
Note to self, you are not as fit as you think you are.
Back to Tablet PC.
December 29th 2015.
Lilly just wished me goodnight followed up with "I hope you get well soon dad". Sorry squidge I don't think I can fix it this time.
Oh stop being so melodramatic you wanker!!!
Trouble is, I'm not. I knew a bloke, he thought he had cancer just like his parents had, took himself off up a track and gassed himself in a car so his kids didn't have to see him waste away as the
cancer takes hold. I don't want my kids to watch me waste away either, I know why he did it now.
Is that being melodramatic or rational?
What would be best? Years ago me and an old friend covered this kind of topic during a hypothetical conversation but years ago I wasn't married nor did I have children, so the answer was easier, get on your motorbike and ride into a wall flat out. Maybe.
What kind of life will it be? Can't eat, can't drink, can't even enjoy a little bit of weed, won't be able to talk and I'll be living in constant pain. Oh fucking joy. Sorry kids I cannot be around like that. I can't expect you to want to be around me when I'm like that I'll be no good as a dad thats for sure
you wont want the constant reminder of how your dad let you down as you were growing up, how he let you down by being a weak lameass that couldn't give up the fags or weed.
Had a long drawn out conversation with the wife a couple of nights ago, today is the 30th it was all about the cancer and what our plan is if it's spread. The outcome was not the nicest, yet it was necessary and I'm reassured to now know that me and my beautiful wife are on the same page,
albeit a morbid page.
Happy new years eve. Yes today is the last day of 2015 and guess where i am, well done, Poole hospital waiting for a chest and abdomen CT scan, this is an exploratory mission to seek out new sites for where the cancer could have spread. I wont get these results till next week, an appointment that I wished I didn't have to have.
I want to turn it off now. It's February 27th 2016. Pain is high, it has been for a while, daily dose, 6 codene (30 mg) 4 ibuprofen (200 mg) and 10 to 15 mls of oramorph. The mornings are getting harder to get going into the day and the nights have become full of broken sleep with hot and cold shakes.
I had been told at Poole that I had two choices, total glossectomy complete with neck diesection or paletive care. That means all neck contents removed, I'll never eat, drink, breathe and speak through my mouth again or pain meds till death but guess what, those caring NHS staff, the consultants and care team that I have been under, hated the fact that these were my only choices and the following week they had me in green clinic for another appointment, it was there I was introduced to Emma King, a surgeon by day and a cancer research scientist by day too also a mother and all round good egg. She opened up a few channels of communication within the global cancer research community
about my case and has had a response that was not expected.
The Italians offered her a new melanoma drug that might work as the Japanese have had some success with this skin cancer drug using it on lung cancer patients and the Americans have said that they will try and make a vaccine tailored to my DNA and my tumours DNA.
Amazin, actually FUCKIN AMAZIN!!
So here i am again March the 1st 2016 at Poole hospital having had an MRI already waiting to go to theatre to have a trachea fitted in case of breathing difficulty after the biopsy and a series of injections into the tumour.
MRI results show the tumour has grown quite a lot in 2 months it's a T4 again.That would explain the increased pain.
Ground breaking shit and yes i'm still a scaredy-cat no one knows what will happen next, but I think I'm ready. I know one thing, I can't keep going with this pain or with the rate at which this cancer is growing. Back in January when Joe first gave me the 2 increadably shitty choices the 2nd option, the one that I had opted for, the paletive care, was set to last on a best case scenario 18months or a worse case scenario of 8months. Well it being March now, those figures are now 6 to 16
months. 6months or 6 hours I think I'm ready if I die, if that is at all possible. At least the pain and tinatus would stop.
That was all that was on my tablet PC and as I said, sorry for the repetition.
But things have changed, It's the 12/03/2016 I have been in hospital for 8 nights i think? and I have had 2 Rounds of melanoma treatment which involves injecting the tumour directly so my immune system can see it.
I have more to tell you about the treatment and my stay in hospital so I shall type again very soon, but for now you beautiful people,
This is Steve Royal, guinea pig to cancer research.
Have a week.
Well, i'm home.
I have been keeping it a little quiet. I myself have been keeping quiet too, but as I understand it, my beautiful wife has been keeping you informed via the Book of Face, which I do intend to look at after I have written this. I'm doing it like this, just so that I can be lazy, I only want to explain what has been going on with me and the world of the cancer, the once.
Here goes.
So at christmas I was told it was back. In January I was told that it was far more serious than they had liked. My trusted consultant, the man whom I have the most faith and confidence with, Joe, called me in to one of the examination rooms. He looked pale. He wasn't alone.
"Steve, I am sorry. This is shit. Because of the shape of the tumour and how it has reformed the outlook is bleak, radiotherapy is not an option due to the amount you have had before."
I was silent.
"You have two choices now, It is either a massive, severe operation or palliative care."
How severe? was the question, but I cant remember who asked it. The response was scary but masked by medical jargon, I didn't realise how scary it was until I researched it at home.
"Total Glossectomy, Total Larengectomy and a complete neck dissection."
Fuck.( Researching this indicated that I would no longer be able to use my mouth for anything. Never eating, never drinking, never speaking and never breathing through it again, ever.)
"Otherwise, how long have I got?" I managed to ask through gritted teeth and watery eyes.
"Worse case senario, 8months. Best case, 18months, with chemo that could be nearly 22months to 2 years." he was saddend to say.
"I'll give you and your wife a moment to talk. Can we clear the room ? " he asked the other staff and they left.
Rebecca and I just looked at each other.Without having to say it, we both knew that I would not be
having the opperation, there was no way I could live like that, I am too busy a person to be a burden and my beautiful wife has enough problems with her own personal medical situation without her having to become my carer.
This was never the plan, the plan was for me, the man that married her, to be the one that does the caring, and I was ready for that, for us to enjoy our senior years together and for me to do what ever I could to keep us going but I was to be the physically strong partner, not the silent blob on the couch, no way could I become that.
As before with this blog, I have found myself writing things down on all manner of different forms of media, and all throughout the tests and meetings running up to the time I was told the cancer
had returned I had been keeping track of my emotions on my tablet pc. The next few extracts are quite raw and I have chosen to share them. They are un-edited and written during a time of unknowns.They cover quite a long period of time, I believe they started mid November 2015 and they carry on to the begining of this month and yes, some of the information has been repeated, I guess using different forms of media and copious amounts of opiates, I tend to forget where I'm at.
Blog from Tablet PC;
I am coming to terms with my own mortality.
It's been quite a while now since I've needed to do this and to do this I need to do.
Next tuesday sees me going back to Poole for a visit to the green clinic and im scared. Again. I'm in pain with my throat or is it my tounge? It hurts to eat, I have a headache that I can no longer ignore, I am feeling really week and full of fatigue my weight is steady at 9and a half stone, my tinnatus has returned with furious anger and the psoriasis on my leg has reappeared. What does that have to do with it? Well, the chemo that I had to have 3 years ago cleared that up so in my
head that means psoriasis has something to do with the cancer.
I'm letting people down, important people whom I love more than I thought possible but if you are a husband, wife or parent, you know just how much love is possible. Ahh, just take another codeine that'll help with the pain, for now. It does make me wonder how many more I would need to
take the pain away for ever. I looked into it, apparently it's about 30 and as long as I wash it down with the oramorph I have at home I should just fall asleep...
Wimp. Thats just being lazy.
I think I want Joe to find something next week, to explain why I feel this way. So I know that it is all not just in my head. My head has known for a while now that I might not make 45, don't ask me how, that is just the way it seems.
3.12.15
So the trip continues. I'm sat in a waiting room waiting for my turn. Joe did see something, he's not sure what so I will be staying still for half an hour while the MRI scanner checks me out but I
wont know anything until a couple of weeks time, when I'll be seeing him next. In the mean time, before then I shall be back here again next week, for a video swallow test to see why I choke on three quarters of the food I eat, I wonder whats on the menu? thats on Tuesday, on Thursday I'll be seeing the look on a hygienist's face when she is tasked with the cleaning of the pirates cove, that my mouth has become, 3ish years of saliva gland obuse has taken its toll on my oral cavity, and I guess you
could say that my mouth is not the prettiest environment to be in, and I would not protest.
Between times, l have picked up my own tools again, yeay! Thats right, Royal Electrical Services has started trading, so happy to be my own boss again, don't get me wrong, working for Frank was great, made alot of good friends there and not any enemies, I think...
Well I had the MRI and now its Tuesday, I'm about to have a video xray... ohh this is exciting. What is not exciting is having to go to a funeral after here, good ol ' uncle Ted, Teddy-Edward as I used to very affectionately call him when I was younger, 88 thats a bloody good innings if you ask me, love you Ted, cheers.
So apparantly the menu is not great, bland and weird textures so I have just been informed, I guess I'll be having a dirty McDonald's when I leave here, if I have time before we celebrate the life of a guy whom I, as a kid would ride in his tractor and just like Nizloppi the tool box would rattle
my bum like berserk.
Just finished the video xray, ewww, gross. That contrast tasted a bit rank, sweet and rank and its too early for Maccy Dee's so I'm going for a breaky at the hospital canteen, wish me luck, at least I'm in the right place if I do choke.
Parked in the car park at Poole crematorium and I wonder, what would be said at my eulogy? "He was a lovable chap happy to help out others, he always looked for the best in people and he believed that he could help bring the best out in people." Maybe? It's hard to know what others really think about you and they can only really say it after you're dead so you can't answer them back. That being the case it would be more likely they would say, "He was a cunt." Totally possible I have been called this from time to time and by the wife more than most although Jody at FRD would come a close 2nd. They may say the usual niceties,"it's always the good ones that go too soon" or they may tell the truth "he battaled with his own addictions'."who knows?...
...I won't.
From what I remember I found Teddy-Edwards cremation to be far more emotional than I expected. I couldn't help but think about my self in that box. How selfish is that? But that was last week, today it's different. Today I am waiting here in green clinic. Here to see Joe, or one of the team.
Hopefully just one of the team, if there is more than one in the room when I walk in I think I might shit. Eeww, that would be nasty. All squished in my particularly old boxer shorts that I adorned myself with this very morning, they've gotten that old that I believe if you tried to give me a wedgie with these on you would end up with the waistband in your hand.
Oo ooh,
I was just called in, but, now I'm back waiting wrong consultant, didn't think I knew the name of him. While I was in there however I had a quick chat with the lady that filmed my throat swallowing last week, it might be in my head, but she seemed overly concerned that I'm in need of more calories and she has a worried expression on her face.
Turns out she knew more than she was trying not to let on. Went in to see the correct consultant and he didn't arrive alone. Shit. Accompanying him was Karen, a cool sympathetically faced lady and two red shirt consultants. We greet each other take our seats and the head of Joe's department
sits down within my space and reasureingly places his hands on my knees.
"There is a questionable, suspicious mass on the back of your tounge. I am quite sure your cancer has returned. We need you to have a biopsy and to have a good look and feel down in your throat."
My next visit to Poole is on Friday 7.15 am for day surgery, a biopsy.
So I had the biopsy, in fact I had 7 and I've been unable to eat anything substantial since. Its now Monday the 21st of December tomorrow I'll be back to Poole to have a peg tube fitted then in a weeks time they will tell me what the plan is.
(A break from Tablet PC ramblings)
I never did have the peg tube re-installed, I went down to the hospital to get it fitted but I managed to convince them that it was not necessary as that day was the first day I had been able to swallow anything since the biopsys 4 days previous and we had no idea what the plan was going to be, I didn't want any extra discomfort and that all I needed really was some easy to swallow food, Fortisips. They agreed and gave me around 50 bottles of the stuff, I thanked them and was able to leave the hospital much sooner than I expected, unfortunatly for me this ment that my prearranged lift home was hours away. I know, I thought, I'll catch the bus. I left the hospital and walked up to the bus stop, oh not this bus stop, it doesn't go to Wimborne, I'll go to the next one... Oh, not this stop either, I'll go
on to the next...
When I got to Fleetsbridge carrying my lunch bottles I had worked up a sweat, I stopped at the next bus stop and it cleary said next bus to Wimborne 4 mins, phew, enough time for a Fortisip, as I was quite hungry and some water, my heart was beating hard, good god I'm unfit I thought, forgetting I've got cancer or the fact that I had not eaten anything since last week! Bus arrived, I get on, "to Wimborne Square please." "Sorry," said the driver "I only go as far as Broadstone." I get off again.
Reluctantly I use my phone to call someone for help, my dad, I didn't want him to get me, I just wanted a phone number of a cabbie friend of his, I knew the guy lived close to Darbys Corner and my logical brain thought it would make perfect sense for this guy to pick me up from Fleetsbridge and get me to Wimborne, also it shouldn't cost me too much. Alas, that one time I decide to call him, true to form I'm let down, no answer was the reply. I decide in my stupid state of mind to try and walk to Wimborne.
Past Tesco's and up the hill to Burger King, on the other side of the road I see an old friend in her van, feeling really quite tired now I drop one of my bags and try to gain her attention by waving
like some lunatic, alas she dosn't see me. Onwards towards Gravel Hill, I try to keep a good pace, all the time telling myself I can do this, yet all the time I am becomming weaker and weaker.
Its on Gravel Hill that I hit the wall. By now I'm close to my nephews school and I am physically drained, emotionally screwed and all I felt like doing was stepping out in front of a lorry. I collapse against a lamp post, sweat running off my head, panting hard but not getting any oxygen into my body. I feel myself about to fall to the floor and I hear voices calling my name...
"Steve? Steve. ... STEVE! Are you ok?"
I look around, and there on the side of the road with his hazard lights flashing was Justin with his beautiful wife Sarah getting out of his car comming to my rescue. These guys have children the same ages as ours and they go to the same schools as ours and they were out for the day with their kids and just happened to be in the right place at the right time for me, I'm not sure they realise how perfect their timing was.
I will forever be in their debt. Thankyou for that lift to Wimborne.
After an hours rest, I calmed down and all was ok once more.
Note to self, you are not as fit as you think you are.
Back to Tablet PC.
December 29th 2015.
Lilly just wished me goodnight followed up with "I hope you get well soon dad". Sorry squidge I don't think I can fix it this time.
Oh stop being so melodramatic you wanker!!!
Trouble is, I'm not. I knew a bloke, he thought he had cancer just like his parents had, took himself off up a track and gassed himself in a car so his kids didn't have to see him waste away as the
cancer takes hold. I don't want my kids to watch me waste away either, I know why he did it now.
Is that being melodramatic or rational?
What would be best? Years ago me and an old friend covered this kind of topic during a hypothetical conversation but years ago I wasn't married nor did I have children, so the answer was easier, get on your motorbike and ride into a wall flat out. Maybe.
What kind of life will it be? Can't eat, can't drink, can't even enjoy a little bit of weed, won't be able to talk and I'll be living in constant pain. Oh fucking joy. Sorry kids I cannot be around like that. I can't expect you to want to be around me when I'm like that I'll be no good as a dad thats for sure
you wont want the constant reminder of how your dad let you down as you were growing up, how he let you down by being a weak lameass that couldn't give up the fags or weed.
Had a long drawn out conversation with the wife a couple of nights ago, today is the 30th it was all about the cancer and what our plan is if it's spread. The outcome was not the nicest, yet it was necessary and I'm reassured to now know that me and my beautiful wife are on the same page,
albeit a morbid page.
Happy new years eve. Yes today is the last day of 2015 and guess where i am, well done, Poole hospital waiting for a chest and abdomen CT scan, this is an exploratory mission to seek out new sites for where the cancer could have spread. I wont get these results till next week, an appointment that I wished I didn't have to have.
I want to turn it off now. It's February 27th 2016. Pain is high, it has been for a while, daily dose, 6 codene (30 mg) 4 ibuprofen (200 mg) and 10 to 15 mls of oramorph. The mornings are getting harder to get going into the day and the nights have become full of broken sleep with hot and cold shakes.
I had been told at Poole that I had two choices, total glossectomy complete with neck diesection or paletive care. That means all neck contents removed, I'll never eat, drink, breathe and speak through my mouth again or pain meds till death but guess what, those caring NHS staff, the consultants and care team that I have been under, hated the fact that these were my only choices and the following week they had me in green clinic for another appointment, it was there I was introduced to Emma King, a surgeon by day and a cancer research scientist by day too also a mother and all round good egg. She opened up a few channels of communication within the global cancer research community
about my case and has had a response that was not expected.
The Italians offered her a new melanoma drug that might work as the Japanese have had some success with this skin cancer drug using it on lung cancer patients and the Americans have said that they will try and make a vaccine tailored to my DNA and my tumours DNA.
Amazin, actually FUCKIN AMAZIN!!
So here i am again March the 1st 2016 at Poole hospital having had an MRI already waiting to go to theatre to have a trachea fitted in case of breathing difficulty after the biopsy and a series of injections into the tumour.
MRI results show the tumour has grown quite a lot in 2 months it's a T4 again.That would explain the increased pain.
Ground breaking shit and yes i'm still a scaredy-cat no one knows what will happen next, but I think I'm ready. I know one thing, I can't keep going with this pain or with the rate at which this cancer is growing. Back in January when Joe first gave me the 2 increadably shitty choices the 2nd option, the one that I had opted for, the paletive care, was set to last on a best case scenario 18months or a worse case scenario of 8months. Well it being March now, those figures are now 6 to 16
months. 6months or 6 hours I think I'm ready if I die, if that is at all possible. At least the pain and tinatus would stop.
That was all that was on my tablet PC and as I said, sorry for the repetition.
But things have changed, It's the 12/03/2016 I have been in hospital for 8 nights i think? and I have had 2 Rounds of melanoma treatment which involves injecting the tumour directly so my immune system can see it.
I have more to tell you about the treatment and my stay in hospital so I shall type again very soon, but for now you beautiful people,
This is Steve Royal, guinea pig to cancer research.
Have a week.
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