21/12/15 Part Duex

21/12/15

What came next was quick.

The head of the department sat down in my personal space and
told me straight, "it looks like you have a tumour in the same
place as before and it looks like cancer." "ok" i responded thinking
to myself, this time I'm not going to say thank you.

"I want you to come in for a biopsy"

"ok"

"and whilst you are in for the biopsy we can have a good look
around in there as you are knocked out, have a feel about so that
we know how much of your tongue we will have to remove"

"ok"

"it's our goal for you to be able to swallow food again once more"

"ok"
  I really could not bring myself to say anything else.

I can't have the same treatment as before, something to do with a
maximum concentrated dose of radiotherapy in one area, they did
mention this and I think I even wrote about my fears of having the
surgery in an earlier blog but it was hypothetical then, now it
seems it will happen.

Friday December 18th and I had been invited to Poole Hospital for
a morning appointment under general anaesthetic to enable the
medical professionals to take a biopsy of ground zero and to have
a good look around. I was anxious, but like always to all of my
appointments I was a little early, I was told I was 1st on the list for
one of the operating theatres but alas when ever I get told
something like that, shit normally hits the fan and this time was
no exception. An emergency case had to go in before me so I
waited. I do hope he or she got all the care and attention that they
needed. Early afternoon and I'm being led through the maze of
tunnels to the theatres nothing to eat or drink in the past 14
hours except for a mouthful of water and 2 cocodamol to cure a
Thursday night Rum session hangover that didn't really appear, I
Did drink on Thursday but I didn't get drunk, never-the-less by
now I was hungry on the verge of crabby, "just keep calm Steve
and carry on" was the mantra in my head. I hadn't realised quite
how calm I was keeping until the anaesthetist team asked me "are
you meditating?" "I wouldn't know how to" I replied "why?" my
pulse was at 52 bpm and my bp was at 97.

3 hours later......

 ...I think and my dependable brother is here to pick me up, cheers bro. ooh that
smarts somewhat, Angie the nurse is talking to me, I can't really
hear her, ahh Andy is here it must be time to go where is my
clothes?  What is she saying? pain medication? yes please can I
have some morphine? where's my clothes? ow that REALLY hurts,
oh she is saying something else, what was that? "you've had 7
biopsies do you have any allergies?" ow fuck it hurts to talk I shake
my head my bro passes me my bag, I get dressed, we leave.

I came away with a bottle of morphine and a couple of
400mg ibuprofen. That'll fix it. Not.

Had the family over for a roast on Sunday, Mums birthday so I
cooked us all a semi Christmas dinner. I guess it was ok, I couldn't
eat it myself, so I just had to make the meal using the force, my
kids are ok today and I have not heard anything bad about my
brothers kids so I believe I got away with it. When I say I couldn't
eat it myself, I mean I can't swallow even drinks are incredibly
painful to consume, I kind of wished the hospital fitted me with
the feeding tube last week and were doing the biopsy this week
but alas it is to be the other way round. Tomorrow sees me back in
Poole for the fitting of the PEG tube. Ho hum I've been here before,
but at least I should be able to get some calories in me, I've
already lost half a stone and I can't really afford to lose anymore.

So that's it so far, I'm going to keep typing this time around, not for
you lot, but for me and maybe my kids for when they are older and
they wonder what their Dad was like. (and he doesn't care so much
about spelling or punctuation this time) Hopefully this will shed a
little light on him for them.

bye for now and Have a .....

21/12/15

21/12/15

Happy Christmas to one and all.

On again, off again. This relationship between myself and this
blog over the years has blown hot and cold more times than the
worst showbiz marrages, although i don't expect to be getting
divorced from this partnership any time soon. Yes, i am sorry to
one and all and especially my beautiful wife and kids for that
terrible disease that played cupid to this Laptop, Blog and myself
3 and a little bit years ago has raised its ugly head again.

The cancer is back.

4 weeks ago I had a routine check up, I saw Joe, I let him know
that I was starting to have have the odd difficulty with
swallowing, I was expecting this but not quite as bad as it
hasbecome, every meal time I was having to cough to clear my
throat as my food just kept getting stuck, I expected this just to
be because of the scar tissue left behind in my throat, Joe agreed
this could just be scar tissue but to make sure he set up an MRI
and a video xray swallow test. 3 weeks ago, MRI, nothing to
report other than apparently I take a good picture, that's just
down to practice I guess, 2 weeks ago a video xray, this was a
new one on me and I didn't know what to expect, not alot really,
water with contrast, a thicker solution with contrast, a
marshmallow covered in contrast and finally a digestive biscuit
dunked in contrast. " oh, i can see you are having problems" said
the radiographer. That was nothing compared to the day
following, I may of had trouble swallowing the test foods but there
was certainly no problem in getting the contrast out of my body...
whoosh thats one way to empty your intestine, they could have
warned me it was going to cause a rapid evacuation.
Now we are at last week, Tuesday saw a follow up visit to green
clinic, expecting to see Joe, but when I got asked to wait in the
consultation room, Joe did not enter, his boss did followed by 2
other consultants, the radiographer and Karen the cancer nurse,
shit, my heart sank.

It's still sinking.

When I know more, I will write more, until then pretty people

Have a Week, a Day, a Month or an Hour.

Bye for now.

17/6/2014

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.

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.

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 41^st!! 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 22^nd 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.

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.

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.

13/03/13

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 16^th 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 30^th 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.