17 / 6 / 2014
Ahhh, and relax.
I'm ok. It's all ok. There is still nothing to worry about. It hasn't come back.
God bless the NHS and 2 sets of clear scans.
What a relief. No answer as to why they couldn't get that scope in and the consultant did say today that they will try to do it again (the camera up my nose that is), but not for 3 months :). That’s right, they don't want to see me till September and I do like the sound of that.
Apparently, anxiety is absolutely normal around this time in recovery, so that must make it official people, I am normal. Much to the surprise of a lot of you, I know.
It did mean a great deal to me, to find out, that word of my last blog entry got out and that so many of you sent me your love and wishes of good luck. It strengthened me to learn that you choose to take time out to read about the State of Stevieboy, even when I only rambled on for my own benefit, to assist myself in the airing out of my fears.
I remember, a few months ago throwing a party to show my appreciation to those who have been there to support me and my beautiful family and what a blazing success it was too. Maybe I should do it again, just for the sake of it, well it would be waste not to share the bar in the garden again and the summer heat could make it all the more enjoyable. It would also give me something else to write about, I have become quite used to this typing about things and perhaps it shouldn't just be the cancer that gives me reason to type, maybe I should just write about all things that make up our, and your rich tapestry of life especially the high points, to scribe about those would make for a much more amusing read, and as long as I keep your names a secret, they can't prosecute.
One thing I do know is "what a beautiful day" it is, as it was on the Saturday of last week, in particular going to the Behind the Castle gig in Sherborne, a music festival to see the "phenomenal" Levellers, I say "Phenomenal" because this was the only term that the presenter on stage could use, and use he did, for every act every time he introduced them whether it was Seth Lakeman (Folk singer / Fiddle player), Paul Brady (Irish folk, blues, rock / Multi Instrumentalist), Newton Faulkner (Ginger Dreadlock Hippie) or the Levellers according to the compere they are " The Phenomenal...", what is wrong with sensational, remarkable, outstanding, unparalleled or just plain old fantastic, because this is what all the acts were. However when the evening grew late and the bar dried up (yes they ran out of beer, hic) and the Levellers started to play, the crowd surged forwards and the kids got excited, "Dad, dad, pick me up" so me and my mate J spent the next hour vigorously bouncing like mad things with our daughters of 8 and 9 years energetically bouncing on our shoulders, and it was AWESOME! Training the next generation of festival goers, without a care in the world. I think we'll have to do something like that again.
Till the next time people, don't go changing.
Missing you already.
Tuesday, 17 June 2014
Tuesday, 10 June 2014
10/6/2014
10/6/2014
I
didn't think I would be doing this quite so soon but never the less, here I am.
2weeks
ago I noticed a difference in the shape of my neck and upon further
examination, by myself, I realized that it was tender. When I thought about
this, I also remembered that I had to start clearing my throat a lot more as I
ate (I've not had to do that for over a year now) so what could this mean?
My
mind went in to meltdown.
I've
just started a new job, back in the world of the employed after quite some time
and I'm enjoying it, o.k. so the early starts are a bit hard but being back in
the workplace is good for me, except when my mind drifts off into its own
little world of "what ifs?" so I needed to be reassured that all is
ok. A quick phone call should do it, a change of appointment from the end of
July to today, this morning in fact. I let my new boss know about this and he was
more than happy to give me a days holiday as he is fully aware of all that I
have gone through over the last 2 years and he understands that a meltdown
mind, is a unhappy mind and an unhappy mind makes mistakes and these mistakes
could be quite costly. So yesterday, he wished me good luck for today.
Bx
wanted to join me today, at the hospital and as the sun was shinning it was a
great excuse for her to get out on the back of my bike, other great reasons for
this are the free parking for motorcycles and the ability to beat rush hour traffic,
alright so the odd traffic violation may have occurred or it may not have,
officer, either way a very enjoyable blat was had on the ride down to Poole,
albeit over far too soon.
Having
arrived early for my appointment, this gave us time for a much needed coffee
and the chance to check the mobile before switching it off upon entrance to the
building, 2 sms messages from Mother and Brother, both of which as you would
expect, messages of "good luck today", just like my new boss and
workmates of yesterday, however lady luck must be out helping someone else,
because today, during my newly made appointment, in what should have been a routine
examination, a simple procedure of a very small camera, a scope to be inserted
up my nose to get a good look at "ground zero", a procedure that has
been done to me every 6 weeks for the last 18 months without any problems, this
time was not to be. It wouldn't fit, they, and I say they because 2 consultants
tried to get this flexible straw up my hooter and 2 consultants hurt me. There
is something in the way. Is it a giant bogie? Or is it something more ominous? Oops,
there goes the meltdown again. Nothing else for it but to have more scans,
URGENT scans is what was requested and urgent scans are now what I have.
A
head and neck MRI on Thursday morning at 8:30am, A head, neck and abdomen
CT scan on Monday at 5:00pm followed by a follow up
appointment on Tuesday at 9:30am to get the results. I wonder
what my new boss is going to make of that. He does seem like a decent fellow
but having been a boss myself I understand that the company chain is only as
strong as the weakest link and at the moment I fear that weak link is me.
With
this fear, the fear of what is inside my nasal cavity blocking the camera from
gaining access to visually inspect "ground zero" and my increasing
mind meltdown spiraling into the fear of "what ifs" my journey back
from Poole, with my ever loving companion sat behind me was a lot more sedate,
almost pedestrian, with my mind not on the road it was probably best that way.
It's
quite amazing, as it was before the expressing of "the state of Stevieboy"
into the written word puts me at ease. I couldn't care if this gets read ever
again but it is "what is on my mind" and probably will be always on
my mind.
Roll
on Next Tuesday.
Tuesday, 4 March 2014
3/3/2014
3/3/2014.
Forgive me blog for I have sinned.
It’s been nearly 8 months since my last
scribbling.
But then again, I’m quite convinced that
I’ve not needed it, I think my roller-coaster ride has finished and now I will be
getting off. I may never blog again (at least not about this subject).
Here I am, 13 months post treatment, able
to eat, drink and be merry with the best of you, oh yeah. Ok so I still have to
make sure I drink a cup of tea with my slice of cake but at least I can have
cake now. So cake I shall have, Birthday
cake, I missed out last year and it was one of those milestone birthdays, I hit
that 40 years of age and I don’t remember I thing about it. It wasn’t from an
excess of substances that I suffer this amnesia, more so an inability to do
much due to the overall state of my being, the post treatment recovery, the
time of extreme tenderness and being generally quite fragile. This means that I feel cheated, swindled and
down right diddled. As you may or may
not be aware, where I live, I, my beautiful wife and children are lucky enough
to have an expanse of garden, long, large and mostly grass, a place that lends
itself rather well to becoming a venue for gatherings of celebration, as it has
done so many times in the past. I had
always been looking forward to the time when I could enjoy the company of so
many of you wonderful people, here in my little corner of Dorset, my Area of
Outstanding Natural Beauty, my home celebrating with me my big 40. Alas this
was not to be. So, let us do the next
best thing, my 41st!! Yes this year I’ll be turning 41 at the start
of spring (not long now) and I have more reasons than ever to celebrate.
Reason 1
I kicked cancers butt, ok so I had help
from the NHS (god bless the NHS, we’re lucky to have it),
Reason 2
My beautiful wife and I have been married
10 years this year. (It seems like only yesterday many of you came to our
wedding!)
Reason 3
I’m turning 41.
Reason 4
This is a strange one, it must be a spinal
thing but like our good friend Nick who celebrates his reason for being with
wheels annually, my wife wishes to mark the 15 year anniversary of the incident
that causes her to never run again. (Not that she ever did. Ed.)
Any reason is a good reason for a gathering
of friends and family so why not come and join us, you know who you are.
We will be hosting a party, for those of
you brave enough to chance the spring time weather, we will supply food, hot
BBQ food, you just need to bring yourself and your own beverage for as I
managed to build my very own Summer Pub at the bottom of my garden whilst
recovering last year (I hung my radiotherapy mask in there), I neglected to
install a cellar, D’oh. We will also have a large bonfire and various types of
shelter. If you wish to bring your own caravan, campervan or tent you are
welcome to do so.
Invites will be sent out shortly, If you
think you deserve one and don't get one via facebook, text or word of mouth,
get in touch with me as I would love for you to come and grace my utopia, to
party, rejoice and make merry with me and my kin on the 22nd of
March 2014.
I draw this journey of mine to a close now,
having had you read my path whether it was on the up or the down, I feel it has
all been worth while. This purely selfish indulgence of mine, this sad and happy
ride upon my roller-coaster has come to the end of the line and now it is time
to get off. I know I am stronger for it, I know I am one of the lucky ones for
surviving this ordeal and for having a wide and varied circle of friends, these
people did more for me than they realize and they all kept me going, from the
oldest ones that surprised and energized me by carving chunks from their own
hairstyles, during a random night of silliness (Leighton), to the ones that did
this for charity and just kept coming around, again, and again, and
again…(Thursday club), from the family I have around me, some of which have
enough of their own problems to deal with day after day, to the school Mums and
Dads that still ask me “How are you?” For this I am truly thankful and now feel
strong enough to give something back, pay it forward so to speak, which is why
I would like to see you all soon.
I
know that it did help me to scribe down all my feelings along the way and I
hoped it may have helped some of you understand how it was for me. I know it’s
not the thing for everyone but to anyone else out there about to start their
own apprehensive journey, all I can say is it worked for me.
This is me, Steve Royal. Thankful and
Cured.
One more thing,
Have a week, in fact, have many, MANY
glorious weeks.
Monday, 15 July 2013
15/7/13
15/7/2013
Hello.
So this time last week I was a big bag o’ nerves. Worried
about what the next oncologist would have to tell me about the new sensations,
the new lumps and bumps that I am feeling in my lower jaw. I say “the next”
oncologist because throughout my 6 weekly check ups I had been seen by a
different medical professional each time that I had arrived for the
consultation. This very lack of continuity of Doctor had alone made me nervous
as it created doubt in my mind as to whether the next guy would know my case as
well as the first who examined me. (Obviously they do, but that didn’t help me
and my pessimistic thoughts.)
But, they must have known, as when I arrived at my
appointment time and sat down in the waiting area doing all I could to keep
calm and collected, I received a lovely warm greeting from two of the nurses
that have been with me all the way along this journey and they both had to
comment on how well I looked, (as did they,) and how good my hair is looking,
this was very polite of them as think I may have been sporting a hairstyle not
too dissimilar from that of Vivian out of the 80’s show “The Young Ones” except
mine is not orange, yet. This did have the desired effect though and it made me
breath a little easier. I thanked them, let them get on with their duties and
continued to wait.
Not for long.
My name was called and I was ushered into an examination
room and although it sounds a bit “gay” to my delight was Doctor Davies my
original oncologist dude. Phew. This man has been my point of contact all along
this road and it was he that has suggested my course of treatment after his
first examination my tongue.
As he greeted me with the usual questions of how are you?
And how have you been? I broke down, my façade went, a tear rolled down my
cheek and I let him know all, everything that you have read here and all of my
anxious worries. Within 10 minutes of
listening intently to what he had to say, I was tranquil, calm and soothed.
“But, before I say anything else” he said, “let’s have a
look” what followed was the usual examination, a feel of my neck and throat, a
look inside my mouth, “tongue out and say ahhh” then the little camera on the
end of a drinking straw rammed up my nose.
“Good, it all looks really healthy.”
Never have so few words meant so much. Delighted am I, still
jubilant at this news a week later. All
the sensations, lumps and bumps have been caused by the radiotherapy and as I
no longer take pain meds, it’s natural for me to feel them.
I have to have another
CT scan soon, this is just routine and maybe a camera up my bum, but that’s ok,
apparently my PET CT scan showed a questionable area in my bowel and it’s
“worth a look”.
But back to today and it is the turn of my beautiful wife to be
at the mercy of the medical staff as they have “the power to rebuild her”, well
her hand anyway, in six million dollar type way. She is in Salisbury
hospital for the next couple of days having reconstructive surgery to hopefully
improve the usage of her right arm extremity. Good Luck and Love to you my
dear.
This is me Steve Royal. Looking really healthy (they tell me
so).
Have a week.
Monday, 8 July 2013
8/7/13
8/7/13
Ok, a year+ ago I had a headache from hell start, which turned out to be caused by a cancerous tumor in my tongue. This in turn sent me down the unknown path, the journey that so many people have travelled before me, my own mother being one of them.
6 months ago, I finished my treatment of Radical Chemoradiation therapy and it hurt, but it was all worth it as the follow up CT and MRI scans showed no sign of the T4 tumour in the base of my tongue (Way-bloody-hay! Whoop Whoop!) and all the oncology staff have been impressed with the way I have coped and how well I have come out the other side. I blame my great recovery on; my beautiful wife, my fabulous family and a certain group of guys that I have seen almost weekly throughout this journey, the same guys that put their own cranial fur beneath the clippers/razors to raise money to help in finding a cure for this terrible disease. Had it not been for their insistence in visiting me and their, not caring about what state they find me in but caring enough to find me anyway attitude, I'm not sure I would be where I am now. Thank you "Thursday Club", long may it go on and our friendship and love continue.
I have had 6 weekly check ups since the end of my treatment the next of which is tomorrow and as always my nerves are on edge. Maybe more so this time around as I have finally be able to stop taking the pain medication - Codeine for which I started on last year for the headache, along with many other pain meds and have now been using in the mornings to get my complete oral cavity working, as to use the term "tender" would be a vast understatement, but tender, sensitive and down right painful it has still been because of the treatment and as the need to eat, drink, swallow and speak is quite the necessity I found that the use of codeine has been invaluable in aiding me to do so. However, as with all drugs, and my own "addictive" nature the come down really has been quite horrific, everything from the shits to sitting quietly in the corner shaking and my emotions have gone from being nasty, to those whom I love most (sorry Mum) to being the most scared, tearful of little boys, sat on the corner of my own bed weeping.
Worried? Yes. Whether it's because my body is no longer numb or is it because it's back, I don't know, but everyday I feel something different and I wonder "did the treatment miss a bit?", "Is it growing again?" and now I can feel a new lump in my throat. But then that's just because I am no longer numb, Right? Then I do the "stupid" thing of going on line to find out the chances of recurrence for tongue cancer and scare the crap out of myself, why did I do that? then again if I believe all I read I'm not the only cancer patient to do this, to feel like this. Only time will tell. Others say " you have to live for today", but I want to live tomorrow too, my kids are too young, as is my beautiful wife and I have to see them all grow up, I have to be there for them and to grow old with them, for fucks sake I'm only 40, once upon a time that was when life starts.
Oh well, take each day as it comes and today is another wonderfully sunny day and I must go and cut my grass. Thanks blog, typing it down on you does really help me. Maybe I'll do it again sooner.
This is me Steve Royal. Still on the roller coaster.
Have a week.
Ok, a year+ ago I had a headache from hell start, which turned out to be caused by a cancerous tumor in my tongue. This in turn sent me down the unknown path, the journey that so many people have travelled before me, my own mother being one of them.
6 months ago, I finished my treatment of Radical Chemoradiation therapy and it hurt, but it was all worth it as the follow up CT and MRI scans showed no sign of the T4 tumour in the base of my tongue (Way-bloody-hay! Whoop Whoop!) and all the oncology staff have been impressed with the way I have coped and how well I have come out the other side. I blame my great recovery on; my beautiful wife, my fabulous family and a certain group of guys that I have seen almost weekly throughout this journey, the same guys that put their own cranial fur beneath the clippers/razors to raise money to help in finding a cure for this terrible disease. Had it not been for their insistence in visiting me and their, not caring about what state they find me in but caring enough to find me anyway attitude, I'm not sure I would be where I am now. Thank you "Thursday Club", long may it go on and our friendship and love continue.
I have had 6 weekly check ups since the end of my treatment the next of which is tomorrow and as always my nerves are on edge. Maybe more so this time around as I have finally be able to stop taking the pain medication - Codeine for which I started on last year for the headache, along with many other pain meds and have now been using in the mornings to get my complete oral cavity working, as to use the term "tender" would be a vast understatement, but tender, sensitive and down right painful it has still been because of the treatment and as the need to eat, drink, swallow and speak is quite the necessity I found that the use of codeine has been invaluable in aiding me to do so. However, as with all drugs, and my own "addictive" nature the come down really has been quite horrific, everything from the shits to sitting quietly in the corner shaking and my emotions have gone from being nasty, to those whom I love most (sorry Mum) to being the most scared, tearful of little boys, sat on the corner of my own bed weeping.
Worried? Yes. Whether it's because my body is no longer numb or is it because it's back, I don't know, but everyday I feel something different and I wonder "did the treatment miss a bit?", "Is it growing again?" and now I can feel a new lump in my throat. But then that's just because I am no longer numb, Right? Then I do the "stupid" thing of going on line to find out the chances of recurrence for tongue cancer and scare the crap out of myself, why did I do that? then again if I believe all I read I'm not the only cancer patient to do this, to feel like this. Only time will tell. Others say " you have to live for today", but I want to live tomorrow too, my kids are too young, as is my beautiful wife and I have to see them all grow up, I have to be there for them and to grow old with them, for fucks sake I'm only 40, once upon a time that was when life starts.
Oh well, take each day as it comes and today is another wonderfully sunny day and I must go and cut my grass. Thanks blog, typing it down on you does really help me. Maybe I'll do it again sooner.
This is me Steve Royal. Still on the roller coaster.
Have a week.
Wednesday, 13 March 2013
13/03/13
Yeah, ok, it’s been a while.
I last left you at the start of my radiotherapy treatment,
well, that’s all finished now and it took up so much of my time I found that I
kept missing the chance to type anything here.
When I did have the chance to tap something down, I was, without doubt,
really quite pissed off with it all.
Pissed off with the itchy face (as it became more and more “sunburnt”),
Pissed off with the sore throat (a cough/cold has nothing on
how sore your throat becomes via this treatment),
Pissed off with the tiredness (being physically (from all
the travelling) and mentally drained (from saying to all that I was “fine” and
keeping up my appearance)),
Pissed off with the snowfall and painkiller combination (for
putting my truck through a hedge),
Pissed off with the blisters on each side of my tongue
appearing, swelling up, popping and then reappearing as though my tongue was on
some kind of “slow rolling boil”. (Resulting
in a constant foul taste being delivered to my already worn out palette)
Because of this level of anger that I found myself in, I
could not bring myself to use this sounding board, this blog, I did not want it
to become a repetitive series of moaning paragraphs full of woe and misery, so
I did what I thought would be right for me, I had a beer or two and tried to
forget the annoyance of my situation, put on my “everything is fine” mask, and
not write about it.
And now?
I have to say, everything is fine. It’s a surprise to
the medical staff as it is to me. My last poisoning with chemotherapy drugs
occurred on the 16th of January and this was a last minute drug swap
to save me from loosing anymore of my hearing, as a side effect that I have
received from my previous chemotherapy has been loss of clarity in sound to my
left ear and yet an increase in the volume of the tinnitus that has plagued me
for many years. At the end of this session my PICC line, the pipe from my bicep
to my heart, was removed (quite an experience to see a foot of plastic piping
be pulled from your arm) and yes I did ask to keep it, maybe I’ll string my 8
teeth on it.
My last session lying on Varian 1 happened on January 30th 2013 and I
came away from the hospital carrying a life size mask of my own chest,
shoulders, neck and head. This now adorns my office wall waiting to be
decorated with my other used medical paraphernalia
As predicted the effects of this radiotherapy treatment kept
on happening throughout February, the soreness, the blisters, the pain and the
having to feed myself via the PEG tube as I could not swallow anything other
than liquid and that was difficult at times, but it got better.
Since the end of February, drinking is not a problem in the
slightest and as long as the food is wet enough I find that I am able to eat
again, although it is not quite the wonderful experience it once was, this is
good news as last week, my back up form of feeding, my PEG tube, fell out. Not
fully which meant I had to go to A&E. Fortunately for me, I had already had
a chat with Joe, my oncologist, and we had decided that instead of having my
PEG tube replaced for a fresh new one for the next 3 months, I could just have
this one removed at the end of March and I would not need another. All this
information was in my medical file, which meant after a 3 hour wait, the lovely
A&E Doctor spent 5 seconds pulling it out of me and sticking on a plaster.
Job done. However, she had discarded this last piece of curative apparatus
before I had the chance to ask for it, to add to my macabre collection (good
job I have a spare clean one).
So, yeah, I’m feeling good. I’m getting stronger and I am
slowly but surely putting on weight, I had dropped to just under 9stone.
I am, however in a state of “limbo” a form of “recovery
limbo” I don’t know if the treatment has worked and I won’t know for some time,
I have to have CT and MRI scans then I have to wait for the results.
I will keep you posted.
This is me, Steve Royal. Out the other side and keeping on
the positive.
Wednesday, 19 December 2012
19/12/12
Ok
New treatments, new worries.
Monday of this week witnessed the start of the next
round of treatment and as before, I was nervous. I am fully aware of what is to
be involved with this new treatment regime, five sessions of beaming technology
including one session of poison, carried out weekly for the next six and a half
weeks.
Although, knowing what is about to be done to you
doesn't always make it easier to cope with, maybe knowing what to expect, only
creates more apprehension.
So, I get to the radiotherapy department in plenty of
time for my appointment at the New Patient Clinic, this was set up 30 minutes
before my first round with "Varian 1" (my new electro-mechanical
friend, the external beam radiation machine) which meant I had 30 minutes to
chat with a very competent, and sincere nurse who was using every possible
string of positive words to tell me, without scaring me, how much "discomfort"
I am to expect and to use his words, "a substantial amount of discomfort",
severe sunburn to my face and neck, an extremely sore throat to the point of
difficulty in swallowing, a lack of saliva and taste, ulcers inside my mouth,
etc. etc. etc. (these are all things that I have heard before and I’m not sure
it helps to be told them again and again.)
This discomfort is not going to be instant, it is to
gradually build up during the course of my treatment and the first couple of
weeks should be pain free, which is nice as I am looking forward to having a
really gluttonous Christmas meal next week, to help me continue my quest to be
closer to twelve stone rather than ten as I have mentioned before, I do need to
fatten up a little bit more to carry me through the later stages of this new
regime.
Chat over and it's time to get in/on Varian 1, and it
is a big machine, it reminds me of a large CNC Multi Head Punch Press used for
punching out all different kinds of shapes in flat sheet steel and when I am
clamped down onto the bench with my own bespoke face shaped vice (my previously
made mask), I feel even more like a piece of material as I am mechanically maneuvered
around in front of the head of the tool, listening to whirls, bumps, clunks and
servos, unable to see as the mask fits so tight it keeps my eyes closed and
having an imagination like mine, part of me expects a 20mm hole to be punched
in my forehead but I know that's not going to happen.
What does happen, this first time for me on Varian 1,
is that because of a strict "measure twice, zap once" system that the
team have in place, they are unable to carry out my treatment straight away as
the markings on my mask (previously made to line the radiation beam up with my
tumor) didn't match the lasers from this machine, even though they tried for
half an hour. This then resulted in my return to a previous, high definition x-ray
machine, to get new markings placed on my mask, another 30 minutes clamped down
on a table unable to speak or see whilst my mask gets adorned with precision
graffiti, this is then followed by more time spent lying down back on Varian 1,
for treatment this time as all the new markings lined up with the laser beams
perfectly.
Movements, zap, movement, zap, movement and finally
zap. All done, actual treatment time 20 minutes, radiation beams from 3
different directions and all is well, lets do it again tomorrow and on Tuesday
we did. I arrived 10/15 minutes early, 11:20 , had my treatment, and left at 11:50 , Bang On.
Now, we are on Wednesday, the first day of
chemotherapy for this new regime, it's not like the last two rounds of poisoning,
this time and for the next four rounds, I am only being subjected to one type
of poison, however this is still going to take a minimum of 5 hours (or more, I
was there from 9.00 till 4.30 today!) and will be followed by a dose of
radiotherapy. It takes this long because the other non-chemo bags of fluids and
minerals required by my body, have to be delivered through my PICC line too, I
need these because the Cisplatin drains my body of them, let us hope, that this
increased frequency of pollution, doesn't start to "stack up" against
me like the radiotherapy will as a stacking of chemo could quite easily see me
back in the hospital for an unwanted stay.
This is me, Steve Royal, still being poisoned and at
the start of being zapped.
Have a Merry week.
Wednesday, 12 December 2012
12/12/12
(last
repetitive date in our lifetimes!)
Ok
I’ve seen the future, and its egg shaped.
What a couple weeks it’s been, all is well.
Second round of chemo (19 days ago) went well, I’ve managed to stay out of
hospital, I haven’t been sick and I’ve still got clean knickers. Bonus. In fact
I’ve been feeling so good in myself that I’ve not had time to stop and write
about how I’m feeling, which is good, as this blogging is here to help me when
I need it, so maybe I’ve not needed it. Never the less it’s good to put down in
words the positive sides too. As concerns the positive side, I got visited by
Mark a couple of Thursdays ago (at one of our regular gatherings, with the all
the usual Thursday night crew) and I have to say how amazed I am by the level of
strength and support my friends have given me. I had already been elevated by
the previously mentioned spontaneous barnett carving of thing 1 and by the
knowledge of Mark and his sacrificial facial follicles for cancer research but
I wasn’t ready for the strength that I have since received from being greeted
by, not just Mark but Steve and Karl too as the three of them turned up at my
home sporting the, all new, egg head look. I had not realized that others were
jumping on the idea of Marks, to raise money, but why the heck not. And the
fact that these guys are willing to have a really, REALLY, cold head so that
I’m not the only one, is one hell of a thing. A thing, that has given me a
massive boost. Thank you egg-heads. Mark
managed to raise close to £700 (fabulous) and I understand that Karl and Steve
both managed to raise somewhere between £200 – £250 for their chosen charities,
Well done, the cold head and embarrassing “survivor ward” look has definitely
been worth while.
So, what else has happened?
On the 28th of last month I
traveled to Poole , to the hospital, for a state of the art molded plastic face mask.
Made to measure, this thing is a true representation of my head and neck and
goes from the top of my head down to just below my nipples. It was very quickly
made, it started out as a flat 2 dimensional plastic sheet (with holes in like
a baby blanket) shaped, just like any old head and shoulders, then it was
heated with hot, not scalding water to make it pliable, so it could then be
forced down over my own head and shoulders by three members of staff, who all
took it in turn to rub this plastic sheet into the contours of my body as it
cooled (which was not unpleasant). This mask is to be used in conjunction with
the radiotherapy machine, to hold me still so that only my tongue gets beamed
with radio waves and not my brain by mistake.
The following week, I had a further 3
visits to the hospital, the first, to see the dentist that ordered the removal
of EIGHT of my teeth, he’s a courteous fellow with a trusting face so I cannot
stay mad with him over his decision with regards to my mouth, after all I could
have brushed my teeth more regularly. He was pleased at how well and healthy my
teeth and gums looked, which is good news to me, as this means I don’t have to
loose anymore. Phew, I’ve just got used to chewing on less teeth and the good
news is I can still eat steak. Nom, nom, nom.
The next day came along and I was back
there again, this time to have the thing that I had been dreading most, the percutaneous endoscopic gastrostomy (PEG) feeding tube. Why I had been dreading it,
I don’t know, it’s not as bad as having a pipe threaded through the network of
veins and arteries to just above your heart, and I have one of those already. I
think the reason I was not looking forward to this procedure was the fact that
they would have to place a camera down my throat to my stomach again and I
really didn’t do well with that first time around, I have quite the sensitive
gag reflex and having this hosepipe sized camera fed down my esophagus causes
me most amounts of distress and retching, retching to the point of bile and
stomach lining joining me on the examination bench. Not nice, but this time, I
was prepared, I had spoken to my team of health care professionals about my
inability to survive an endoscopic examination, without seeing my last meal
again and it was my oncologist that suggested that I let the team carrying out
my PEG insertion know that I would not be able to go through this procedure,
unless I had a little help, and to ask for Midazolam.
He told me “it’s great, you won’t know a thing about it” so I asked for it, and
I let the team also know about my previously mentioned 20year old habit (which
I know can make a difference when it comes to dosages and pain meds), so the
team involved with the fitting of my new feeding tube asked me if they could
get access to my PICC line and chose to give me the required amount of said
Midazolam with a shot of Pethidine for the pain. I woke up on the ward nearly 2
hours later, PEG tube fitted, no problem. They warned me it would get sore as
the pain meds ware off and asked, “do you have Oramorph at home?” “Yes I
do” “take it” they said, so take it I
did. Wednesday came around and in the morning I had, what can only be described
as an opium hangover, it’s like a beer hangover but it was soon gone thanks to
a couple of paracetemols with added codeine. On the plus side, since last
Thursday I’ve not taken any pain meds at all. Which must mean, round 2 of the
chemotherapy has done some good as I no longer have the head ache that prompted
me to visit the doctor back in June of this year, I can only surmise that this
must mean, that the tumor in my tongue is shrinking.
Friday the 7th and it’s time for
the, oh so familiar, trip to Longfleet
Road (Poole Hospital ).
This time for a visit to the dental team again, not for extractions or
examinations but for an overdue visit to the hygienist for a deep clean and
polish. This is something that is not alien to me, I have seen 5 or 6 different
hygienists over the years and although the end result is always the same, nice
and clean (but not quite pearly-white) teeth, their techniques can differ so
much that the level of pain they can inflict on my gums varies significantly
and I am happy to report that as well as my dentist at Poole Hospital being
very thorough, the hygienist was very careful to only scrub my teeth and not my
gums with the high powered sonic water jet thingy.
The days that I have not had to travel to Poole have generally seen
nurses travel to me. The 6d Handley district nurse team is excellent, well the
ones I have met, Sarah, Holly and Caroline, but I am certain the rest of the
team is just as a accommodating. They are more than happy to work around all my
other appointments, finding the right time to come to me and give me a line
flush and a dressing change and it is very reassuring to know that they are
there, just a phone call away if I need them. Other visitors have included
specialist nurses too, a cancer care nurse, Linda (she was the one that my
beautiful wife rang when I had a bad reaction to the 1st round of
chemo and she told Bx to get me to the hospital, good call). Finally, but by no
means least is Michelle, a nutricia nurse, it’s her job to make sure that my
new PEG tube is all ok and that I am confident in using it, when the time comes
for me to have to use it.
At the moment I don’t need to use this new
“borg” implant (Star Trek reference) but they say that I will require it from around
week 4 of the radiotherapy, possibly from week 2 (coincidentally that will be
the start of the new year) as my saliva glands shut down along with my taste
buds, swallowing muscles and worse case scenario, my voice. It’s then when I
will have to use it to keep my strength up, resistance is futile.
So that’s about it apart from this Friday
coming, the 14th of December, this is the day of my simulated radiotherapy
before it’s all due to start next Monday the 17th (which is also the day a great friend
of mine has to bury his father, may he rest in peace and may the day go well).
This next coarse of treatment will be for six and half weeks of daily commutes
to Longfleet Road except for Christmas Day (my fathers birthday (no, he is not
Jesus)), Boxing Day and the weekends. I am to have chemotherapy too for 1 day
each week for five of these six and half weeks, here’s hoping the small amount
of beer that I have been drinking can still be drunk to keep me feeling well
enough to want to eat. Oh roll on the end of January.
A long entry to this blog I know, but it
has been a while. Maybe it won’t be so long before I do it again, maybe it
will. Just in case, Merry Christmas and season’s greetings to you all.
This is me, Steve Royal. Positively radiant
and looking to “well” to have cancer (I know this because that’s what people
say).
Have a Week.
Subscribe to:
Posts (Atom)