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.