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.

19/12/12

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.

12/12/12

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 28^th 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 7^th 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 1^st 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 14^th of December, this is the day of my simulated radiotherapy before it’s all due to start next Monday the 17^th  (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.   

26/11/12

26/11/12

OK.

 

This is better, I can cope.

 

Last time around, at this stage, I was feeling awful but this time, it’s not quite so bad. Yes I have the foulest of tastes in my mouth but I can drink, eat some things and keep it all in. The taste is really an all together new experience to me and it is said to be different for all us chemo patients, I say it’s new to me however it’s the same as the first time, Rank. It’s a flavour that starts at the pit of my stomach, the lower regions of my belly, deep from the puddle of bile and from there it seems to manifest itself into a form of two to three day old stewed coffee from McDonalds without the sugar, picking up notes of bad fish, complementing the overwhelming accents of chemical poisons along the way to my tongue where it descends upon my taste buds with a hard, almost snake skin type texture.

 

As I said, it’s different for all chemo patients. So the trick I have learned is to find the key ingredient that can “cut through” the taste. I’m doing well with good quality expensive well smoked British bacon accompanied by our very own free range eggs, as long as the bread is not anymore than slightly toasted, as the excessive toasting can be terrible as concerns the texture on my poorly tongue. One of the other flavours that I seem to be having a great deal of success with is Beer, not a vast amount but it does seem to cleanse the pallet and settle the stomach enough to do more eating of cheeses in the evening, which has to be a good thing as I need the calories.

 

So another two days left to run on this pump of chemicals then it is to be disconnected and I can flush out this mouth rankness so come Thursday/Friday this week I should be on course for enjoying sugar in my coffee and the wonderful flavours of beans on toast, which I do have to admit, I am looking forward to. Also Thursday is to be the day when another good friend of mine has decided to abuse his own great looks for charity. Mark the man who has hidden behind a beard for most of his adult life has taken the challenge and decided to remove all remnants of hair from his own head, he has chosen to do this and to do good at the same time by setting up a just giving page to raise his target to give to cancer research. You can read his story here;

 

http://www.justgiving.com/Mark-Alman

 

Thanks Mark and well done on reaching your target. (I feel compelled to let you all know that you can still donate on this page, but please do not feel as though you have to, I haven’t) I am looking forward to sharing a beer with you and all your baldness.

 

Next step, Wednesday, off to Poole for a CT scan and a mask fitting, should be interesting if nothing else, interesting to see if I notice any reduction in tumour size on the scan and interesting as so much as having a bespoke built, made to measure mask crafted to the contours of my own face. I have heard from others that know others that have had tongue, throat and neck cancers that now they have chosen to decorate the walls of their homes with their new mask. This I can quite understand and will probably do a similar thing maybe I could hang a necklace of my own teeth around it or just screw my old teeth on with the screws they removed from my ankle many years ago after it shattered during a bike accident. 

 

Who knows what I’ll do.

 

This is me Steve Royal. Stronger than before and burnished by beer.

 

Have a week.

 

22/11/12

22/11/12

OK

At the moment, I'm nervous.

Today they have chosen to do round 2, in 8 hours time. Joe, my oncologist has said the dosages have been lowered by 20%. I am still to be having all 3 meds just a little bit less and that it was the 2 that they gave me in the hospital were the ones that "knocked me out", and the third one in the pump just stops anything and everything from healing.
So time will tell, but that can't stop me from becoming worried about the thought of  having to spend time in the hospital again for 3 or 4 days...

So I'm here, 2 drugs added cisplatin and docetaxel and as before, all is well. The nurse and I have both checked the levels and we can concur that I have been given a lower dose, (here's hoping my body can cope) I feel stronger, knowing what to expect so maybe being in this situation of mine, having had an appalling reaction to round 1, is only going to make me strong enough to ride out this round of treatment. Never the less I can't help the level that my nerves have risen too.

On the plus side, it is not just I that has noticed a difference in my appearance, and I'm not on about the shaved head, younger, fatter, prettier looking me, I mean the visible reduction in lymph node swelling in my neck, the pair of quails eggs that i had been able to spot in the mirror, after I removed my goatee, in the base of my neck, have gone. I don't mean gone down a bit, I mean gone completely. This chemo, for all the crap it gave me first time around is doing what it is meant to do and it's not just my wishful thinking, both Karen (my ENT nurse) and Joe (my oncologist) have noticed as well as my beautiful wife. (Big smiley face)


So as before, I am entering another quandary. When I went through the process of round 1, I did everything by the book and ended up being admitted into hospital for a 3 night stay. Since recovering from that "hiccup" I have got stronger and by watching what I eat and drink, meticulously, I have been told by many that I look really well (now that's a boost to the ego, especially when it's being said by the ladies, you know who you are) keep it up and I do feel well, well enough that last week I gave out a shout and had a thoroughly great evening with a pair of truly stunning young louts (40 years young the pair of them ) now these two have been long time drinking partners of mine although to be fair, it seems to have been a while since I had the chance to have joined these two for a session, so the session was helped along with a 4 pack of brown beer for me, a demijohn of some belly rotting scrumpy for the brothers topped of with a bottle of Sailor Jerry, and a half bottle of Appleton. This of course, resulted in most amounts of merriment and a joyous evening/early morning was had by all this of course included a ceremonious head shaving which I did expect only mine to be shaved but as I passed the clippers to thing 1 to hold as I prepared myself for the cut, he proceeded to instantly carve out a section of his own barnett.  W T F ??  "Dude, what you doin.? you don't have to do that" was my response, laughter, loud laughter was the response of thing 2.
" I know, I wanted to do it with you" was the retort of thing 1. Now that made me realize just how much my friends mean to me and how much i mean to my friends. Thank you Leighton I didn't realize at first just how much that small action of yours lifted me and thank you Roy for being the provider of laughter and back ground ambiance.
So where is the quandary? well that Friday night came and went and on the Saturday there was absolutely no ill affects, none, so tonight before i "go down hill" there's another bunch of reprobates joining us at our home and I feel the urge to join them in a sneaky beer so, "beer or not to beer, that is the question". I feel I may already know the answer.


This is me, Steve Royal. Midway through chemo round 2.

Have a week.