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.

16/11/12

15/11/12

Ok

 

0330 hrs.

 

 I can’t get no sleep.

 

I wasn’t expecting to be unable to sleep, after what my body has been going through.  Let’s see, good day Monday, singing in the kitchen, managed to get dressed for a couple of hours, split up some logs and kindling, shift some coal, then collapsed. Not seriously, just I became very knackered very quickly. This was okay because all I had to do was build and light the fire. Mmm, toastie-warm. I also felt well enough, that I went without the pain meds. Then on Tuesday, all I had to do was get myself ready to be visited by 2 nurses at different times (best make sure my pits don’t stink). Still no headache so I took no pain meds, I remember looking at my self upstairs in the mirror whilst doing my ablutions thinking “yes, this is good, no headache, it must be working. Ha. There you go cancer, get the f… out of my body!” and it was then that I noticed that my now extra sleek, extra slender form had a new “topcoat” a rash. Not a raw blistery, itchy type rash but just a really pronounced mottling almost marbling of the skin. This was accompanied by four really sore knuckles, two on each hand. This was strange but not uncomfortable. Tuesday carried on and the first of my nurses arrived to check up and change the dressing on my arm (where my PICC line enters me) hopefully for a more robust version of the one that I came away from the hospital with, a dressing that, doesn’t mind an armful of split logs resting on, was the kind of dressing I asked for from the nurse, which prompted an all together more alarmed tone from her than I expected. “What? An axe? You’ve been using an axe?” she responded, whoops, “you men, why won’t you just stay still? At least tell me you had some gloves on.” She continued, a very sheepish, almost adolescent me glanced sideways and lied “yes, safety glasses too.” I think I got away with it. I mean I’d be alright wouldn’t I? Apparently I’d be fine right up until the point I cut myself or get a splinter and then the infections would make me not fine as my usual first line of bodily defence, the bits inside us we forget about, the white blood cells are just not there at the mo. Just as well I did enough logs, kindling and coal for the next 3 days.

 

0425 hrs, best try to get some sleep.

 

Sleep I did. Today is now the 16^th, I’ve not slept for a whole day, I just didn’t get time yesterday to do any typing.

 

Wednesday came and I got the chance to go out for a bit of a bimble, not one on my bike, which would have been awesome, but in the car, the poor neglected car, never the less it was good to be out under my own steam, away from my own safe four walls and out into the infectious filled world.

First stop, McDonalds. Yummy, I do like their dirty food and it has been a while since my last one. Do you know I got medical grounds for going, their burger and fries meals really are easy to eat and full of calories, I’ll have 2 please.

Second stop, pop next door to Halfords and get some bits to start repairing the wifes car, on the way to the third and forth stops, get the car cleaned. It’s the least I can do and doesn’t really take any energy of mine to do it (it feels so good to be doing something). Arrive at this, my third port of call and ask the team of professionals, “could you please make my wifes’ car go around corners safely, and adjust the tracking?”

“Certainly Steve, we can do it right now” was the response at Tyreland, I do like them down there and it turns out the front wheels were 4mm out. That’s another job sorted on to visit number four a social and practical visit to plug this poorly vehicle in to get the dashboard disco lights switched off, into Wimborne to catch up with Shaun and Dan at Minster Mechanics and receive a healthy dose of abuse, as well as deliver some.
It feels great to know all the things that happen in this world keep happening, I mean of course they do, the world doesn’t revolve around cancer and by just getting out and visiting people even for 10 minutes makes me feel so much better, brighter even, more invigorated, recharged and ready more so than ever to beat this. Last scheduled stop, my Christmas present from the wife (early we know but needed now rather than then), Holmans for a Sony Tablet (I think she wants her laptop back), I chose the Sony to match my new phone the Xperia which means the next time I’m having to stay in the hospital I won’t have to shell out loads a wonga for the hosmedia system, so that I don’t be feel quite so cut off from civilisation and I won’t have to try and tap my blog into an iPhone.

This was going to be last stop of my days bimbling and I must admit I was starting to get really tired, really quickly. This is something that happens because of the chemo and I can’t get used to it, so there was nothing else I could do other than an impromptu visit to the wife at her work for a sit down and a strong sweet coffee (good job she works close to Holmans).

Whilst there having a 30 minute rest she commented on how nice her car looked so I thought I would let her use it get home, now that I know it goes around corners ok, also it gave me the chance to finish my days bimble in the mighty Defender and all its V8 goodness (burble burble burble). It just sounds so good to rag around town and makes you smile when driving it.

 

God, it’s good medicine to get out.

 

My rash has cleared up as quick as it came, but unfortunately my head ache has returned, not quite as bad yet, so I’m only on the cocodamol throughout the day, with maybe just a dash of morphine when needed but the hair is coming out, that started around my previously mentioned wang (leaving a trail of short n curlys’ every time that I visited the loo) and has now included the rather short hair style that I have on my head too. I was aware that this could happen, hence the radical hair style change so I’m glad that it is now only a short step to becoming completely head shaved. The question is, do I completely wang shave too?

 

This is me Steve Royal. Buoyant from bimbling, titillated by technology.

 

Have a week.

 

  

 

 

 

 

12/11/12

12/11/12

Ok.

 

What a difference a week makes.

 

I while ago, I started to type down a few emotions with an ever present question in my head “is this going to help?” and what do you know, I think it does. Today, I feel really positive about it all, I found my self singing in the kitchen earlier and that’s been a while.

 I’m not sure if it’s just because I’m putting my feelings into words or maybe it’s the fact that so many people have shown me a fantastic amount of support, whatever it is, it’s working.  Maybe it has been all the words of encouragement that I have received from family and friends both new and old, maybe it’s the random acts of pure kindness that my family and I have benefited from, maybe it’s the fact that Mark and I’m led to believe others, are going to completely shave their heads and faces (and in Marks case this is something that has not been done since I was 4) in an attempt to raise money for cancer research or is it the witches I know casting spells of good-vibe-ness, I just don’t know. I do know that it’s not the morphine, I’ve not needed any for a couple of days but that doesn’t mean that I’m going to get rid of the bottle (winking smiley face), you never know when you might need some of that.

 

As concerns my projected treatment course, I still have my meeting with my Oncologist on the 21^st of this month and if my blood is strong enough, he is going to pump me full of the same drugs on the 22^nd as he did on the 1^st. He did promise me that he will be reducing the dosage (phew!), this does come as a relief to hear and I am sure that these toxins, in their lesser amount, will still do what they are meant to do.  At least this time I’ll have an idea of what to expect, what signs to look out for and to know to get to the hospital if I have to. As it turns out this human body of ours is really quite resilient and it does bounce back.

 

Boing.

 

Right, I’m off to find something else to savour, to feast upon, and to get fat on. I might even bake a cake or maybe I shouldn’t waste the calories mixing perhaps I should just eat some cakes.  Hello, the wife just got back from waitrose and placed some “seriously dainty cupcakes” by my side, now there’s girl after my own heart.

 

This is me Steve Royal. Invigorated by friendship, fattened by love.

 

Have a week.

10/11/12

10/11/12

 

 

Oh hello here we go.

 

Get me I’m starting this instalment from hospital on an iPhone. Thanks Bruv but I will be returning it to you when I get my new phone, I’m such an apple-fobe.


I couldn’t quite manage the full dose of the chemotherapy drugs that they left with me on Thursday of last week.

I had two different drugs during the day and a third one to come home with in a pump for 5 days and it was this 5fu intravenous chemotherapy drug that decided to make me ill. I'll admit it, scarily ill.

Enough for me to say to the wife on Tuesday, “I can't cope with this babe, I want to go to hospital". Me. Wanting to spend time somewhere where I'm going to be spending a lot of time soon enough! I must have been bad.

The infrastructure, the backbone, by which I mean the nurses and doctors at Poole are excellent and they all said that I had done the right thing in coming in and they took the chemo pump off, flushed my PICC line then connected 4off 1 litre bags of essential fluids over the next 2 days because of the level of dehydration I had endured.

 

I slept.

Hmm that's what happens when you can't swallow is it? Yep.
So I had to loose the pump a day early, it was only 1 day, I think I did rather well, you know you can never really understand what these poisons do to you, until it has been done to you and I don't want anyone that I know and love to have to go through it. They do say that everyone reacts differently so maybe the next people we meet, the 1 in 3, will not have to suffer the pain, anguish and stench of the poisons excreting themselves from every pore of their body as I have. It was so unbelievably great to feel well enough to stand under the shower and remove the layers of noxious ooze that had deposited its self upon me.

 

So I came home on Friday, eager to try and carry on with my re-cooperation at home, even though it is to be around this time, days 10 to 14, that my white blood cell count is at its lowest and I am now most susceptible to infection, but I do not want to miss any more than I have to of my family and creature comforts. Anyway, who is to say that my home is not a cleaner/safer place for me to be right now? As for my creature comforts, that would include this, my beautiful wifes’ laptop, my sounding board, my post to the world. It’s so much easier to blog from than an iPhone and when I switched it on to do so I found a couple of paragraphs that I had composed before I went to the hospital on Tuesday, paragraphs that I wasn’t sure whether I would publish here or not.

 

But I will, as I want this to be a true record of how I have felt and at that time, I felt like this:

 

 

 

 

5/11/12

 

 

Ok.

 

Chemo Day 5.

 

Holy shit.

 

I know they said it wasn’t gonna be a “walk in the park” but fuck me it’s hard.

Stop moaning you big girls blouse, loads of people have to do this and it will all be worth it in the end (just look at your kids). Even if you can’t taste anything any good at the mo, what you can taste is chemo drugs and smell them I swear I stink of the stuff its secreting out of my skin. It’s hanging around me like a cloud.

Maybe I’ll be feeling better on Wednesday when this pump gets disconnected and I no longer have a continuous feed of this poison trickling into me.

 

Day 6

 

I can’t stand this barbaric form of torture anymore.

Was it not for the love of my beautiful wife and children I would be searching for the easy way out, I’m such a Lame-ass.

 

I’ve started to dribble from every orifice and that is SO not pleasant. The stench about me is just getting worse and yet my darling wife can still find reasons to love me and to make me “feel” better about it. I love you Rebecca.

 

On day 6, I gave up trying to cope, threw in the towel, and got my beautiful wife to take me to hospital.

 

Remember we are now on day 10 and I came out of the hospital yesterday, to my own bed.  I’m not feeling perfect by any stretch of the imagination and I have many more pills but I have got my sense of positivity and taste back, beans on toast never tasted so good.

 

This is me Steve Royal. Coming through chemotherapy round 1.

 

Have a week.

2/11/12

2/11/12





Ok



Now with added Toxins.



Yesterday came and went, I was the first patient in to the Dorset Cancer Care dept at Poole Hospital and the last one to leave, full of a whole, new-to-me batch of pollutants and as I write this, I’m not feeling too bad. I did come away from there with a pump (that works on air pressure (quite ingenious)) attached to the PICC line (that I received on Tuesday) and another bag load of pills (steroids and anti-sickness ones mainly).


I must admit, I was very nervous before the treatment started but “hats off” to the team in the DCC they were all very pleasant and there is a good positive attitude across the dept and I even got to hear the “END OF CHEMO” Ships bell ring beside the front door which was then answered with a loud cheer, whistles and woohoo’s from all within earshot, as a fellow sufferer stepped out after being given the “all clear”. (I’m gonna ring that bell, so hard, so loud, that all of you reading this little page of mine will hear it in your homes and you will know that I have won.)

My treatment started with a series of different saline type solutions being added to my blood stream via my new tiny white pipe, litres of the stuff complete with an added diuretic, yes me Stevieboy inventor of the “Royal Wee” was given an intravenous diuretic, no need, this resulted in my need to pee equalling that of the, 4 pints of best seal breaking moment after a day of drinking coffee at work with no food. Yep every ten minutes I had to unplug the auto drug giving machine from the mains, check that my pipe work was safe and wheel this apparatus into the toilet and measure my wee, and then make it safely back to my little corner of the dept.

I peed 7.65 litres yesterday.


It’s kind of safe for me to say that, yes now the penny has dropped, I am under no illusion, I do have this disease, now it’s all about getting over it. Having this extra pipe leading into my left bicep (not the crook of my elbow) is quite good at reminding me of this.


So for now I shall be doing things only when I can. (This includes stopping at the cinema on the way home last night with the wife and watching “Skyfall”, which was most excellent)

I shall be sleeping when I have to and possibly living in my pyjamas or possibly not. Our door is open to visitors, but don’t feel as though you have to, especially if you are coming down with something, chicken pox, shingles, measles, flu…..etc. as a side effect to this chemo is my not having any white blood cells, so I cannot fight off infections, but this wont be forever.


This is me Steve Royal. Son to Christine and Tony.


Have a week.

24/10/12

24/10/12



ok



I get my head around it all, then in a morning, it all changes.



Had my eight back teeth removed on Monday, all my wisdom teeth and the four molars directly in front of them. Oh now it’s a bit weird. I could say it was tender or really painful but that would be a bit of a lie for when you have a bottle of morphine in the fridge, nothing hurts.

It’s weird because I now have extra corners in my mouth for my tongue to rub against and big areas where food doesn’t get chewed anymore. The last time I had missing teeth was when my milk teeth came out and “proper” teeth replaced them (no such luck this time). Goodbye teeth, missing you already.


Yesterday we had a meeting with Joe, my new oncologist at Poole. It was the first time that he has seen my scans and the first time that I have too. Guess what I spotted first… that’s right the first thing I said was “you can see my wang!” I didn’t realise it would be so detailed, why not ? It is a scan to show up things in your body after all, like a tumour. D’oh.


I did take some photos of the scans and when I get round to it I might try and put them up on this blog, I’ll see how it goes.


So the Radical Chemoradiotherapy is on hold for a little bit, as Joe wishes to attack the tumour with a more aggressive form of chemotherapy comprising of 3 different drugs fed intravenously through a Peripherally Inserted Central Catheter (PICC) line, This is a fine, long plastic tube that is inserted into a vein in the crook of my arm, threaded up my vein into a larger blood vessel in my chest. A chest x-ray will be taken to ensure it is in the correct place. This will stay in me until the end of the treatment.

The three individual drugs then to be taken are Docetaxel (this takes an hour in hospital), Cisplatin (with pre- and post-hydration to keep my kidneys flushed, this takes about 5 hours in hospital (good book required)) and Fluorouracil (this takes 4 days and will be drip fed into my PICC line via a pump that I can come home with). There will also be a series of steroids and anti-sickness drugs to be taken either orally or intravenously.


17 days later, after my white blood cell count returns, it all starts again for round 2.


Apparently I am to expect to lose my hair as this is a side effect to the Docetaxel, oh well, it’s only hair and it will grow back, unlike the goatee.


A further 17 days later again, after my blood tests return to normal, I should then be on for the original plan of 6 and half weeks of radiotherapy with 5 weeks of chemotherapy at the same time.


And again, Wow.


So just enough time for 1 last session on the rum good job my brother has a birthday at the weekend!


It’s still really hard for me to get my head around the fact that it’s me Stevieboy with this disease. I read the leaflets, I get spoken to by a wonderful medical support team and yet has the penny dropped? I can only hope that by my want to continue to type it has.


This is me, Steve Royal. Brother to Andrew.



Have a week.

22/10/12

22/10/12



ok



Today is the first of many procedures for me at Poole Hospital relating to this illness, it’s strange to call it an illness when I don’t actually feel ill (not physically ill that is but I am oh so very aware of becoming mentally ill).

For instance, I wanted to watch CH4 on Friday night and their “STAND UP 2 CANCER” campaign, I had bought myself and Rebecca a, “S^2C” hoody and I was looking forward to watching a night of comedy, especially as it is all in aid of something that is most definitely in the forefront of my mind and is such a worthy cause.

So, after helping to settle the kids in bed I got ready with a cup of coffee, sat down and put the telly on. Realising that I had missed the start of the show, never mind, I caught about 3 minutes of the presenters and then, I couldn’t watch any more. I had to change channel. It’s not that I was shocked or horrified, usually when I have watched this kind of show (Children in Need, Comic Relief, etc.)and I know that I have done my bit, given to the charity in question, I can happily sit through the stories about why they have come together on that evening, no matter how distressing, sad and heart wrenching they can be, I can still enjoy a great night of entertainment.

But not this night, being in the situation that I am in and this night being about what it was about, it was like it was being thrust down my throat “you have cancer” and sometimes it can feel as though I get enough of that every time I get asked, “you o.k.?” and “how you doing?”.

However I do understand peoples want to check up on me and their need to ask about my condition, this is where I must be becoming mentally unfit as this can upset me, because in my head it’s like I see these people pointing at me and holding a sign up saying in large print “THIS GUY HAS CANCER, HE’S GOING TO DIE.” and I know, that this is not their intention.

I’m not asking for people to stop asking, I’m saying please don’t be offended or surprised by my answer, especially if you catch me at the bottom of my rollercoaster of emotion.



Still back to today and the imminent removal of teeth… if I was looking forward to this, I know for sure that I would be mentally unbalanced and I would be shouting “COMMIT ME NOW!” but I am not.

The last time I woke up in Poole Hospitals recovery room I was in so much pain they dosed me too the hilt with morphine and I completely lost 24 hours, I can’t afford that today, I’ve got a meeting tomorrow where I get to see my scan results a chance to visualize which bits are cancer. I might try to get pictures!



Will it be wrong to ask the surgeon for my teeth back? I want to see if the tooth fairy is real…





This is me Steve Royal. Husband to Rebecca.




Have a week.

18/10/12

18/10/12

Ok

 

I’m up, I’m down. I’m on a rollercoaster.

 

So I ended my first attempt of opening myself up, via the form of the written word with blatant plagiarism. It’s true my “have a week” statement is not my own work it was in fact taken from a very good friend of mines’ blog whom himself had swiped it from another friends blog so it seemed ok for me to use it too, so use it I shall.

 

They changed my pain meds on Tuesday, only so I would be on more codeine, more drugs, Solpadol 30/500mg, Diclofenac 50mg, Tramadol 50mg, Amitriptyline 20mg and Oramorph 50 mg, to be taken when needed and unfortunately need them I do, all of them at night to get some sleep I do however try to stay off the Tramadol.  Maybe it’s the change in the meds that has urged me to type.  Other meds include Omeprazole 40mg (for a hiatus hernia that I never knew I had (apart from serious “keep me awake” acid)) and finally Chaga Mushroom (some form of hippie/old Chinese dude remedy for bad things?).

It’s not a bad mix of drugs, it’s just I never really took tablets before and now I don’t know if I’ll be able to stop (I will be able to stop it’s whether or not I want to stop. I have gone from a smoking addiction of 25years (20 of which have included a little bit of pot) to quite strong pain relief, with no smoking and the effects are amazingly similar). The thing with these meds is I now have this cushion around me of numbness and a sense of “blasé-ness” about my situation and although I am aware of the seriousness of this illness, to the outside eye I am remarkably calm, I know this because they tell me so. So how will I cope when the head pain is gone and I have no need for the pills? Will I be reaching for a spliff? Are they right? Did smoking pot cause this? (I hope not!)

 

I never know when I’ll be rambling on here so I may continue to post 2 or 3 times a day or not for 2 or 3 days?

 

They say that they are going to give me a, percutaneous endoscopic gastrostomy (PEG) feeding tube (that’s going to save me from having to eat endless Christmas turkeys but not from the eggnog), but they are quietly confident that I won’t need a tracheotomy, which was nice.

 

Apparently I will be using O.A.P. toothpaste and mouthwashes 4 different mouthwashes but not all at the same time, I’m sure just a large tot of rum would do the same but that’ll be a no no too. Best finish the bottle soon.

 
 

This is me Steve Royal.  Father of 2.


Have a week

17/10/12

17/10/12.

ok.

This is to save me filling up the “What’s on your mind” box on facebook.

I am a father, a son, a husband, a brother, as well as a cousin, a nephew and an uncle also a friend to many and I have many good friends.  I don't know if this will help or not, but I thought it would be worth a try.

What happens to me and my life, affects many around me and my life is changing, not for better or worse, just changing and I have to cope with the changes as do those around me.

The change? Well that would be being diagnosed with cancer. Tongue cancer, who would have thought that you could get cancer there, eh? Not I. but never the less, it happened and I just thought it was tooth ache 5 months ago but I am told that the diagnosis is:

 T4N2cM0 SCC (squamous cell carcinoma) base of tongue (staging explained at the end of this blog).

And that the proposed treatment will be Radical Chemoradiotherapy.

Wow.

So what is next? Apparently because of the treatment and the way that it works, any possibly “dodgy” areas have to be made “tip top” before I get into the beam. This means that because of those times earlier in my life, when I choose to just go to bed or to just leave the house without brushing my teeth, causing that little bit of blood in the sink after brushing, now means that although my oral hygiene is described as “fair” I have to say goodbye to 8 of my teeth in one afternoon (sad smiley face). This is to be happening next Monday.

After that takes place I shall be having a solid mask made of my face, neck, shoulders and chest so that I stay still enough so that they can target the tumour with the Radiotherapy machine.

I would be a fool if I said that I wasn’t scared, I am scared, of many things and yet they are all related to this cancer.  I just hope that by tapping away at these keys it helps me in the long run. This may well become my sounding board and to the reader it may well become “boring” this I do understand, trust me I have read enough other blogs from cancer patients such as I and they all are on the morose, melancholy, gloomy side and I can understand why. Bottom line, cancer does still kill and we have to be aware of this and when it doesn’t kill, the treatment is not a “walk in the park”. All the books I have read on the subject tell me this and over the next couple of months I get to experience it first hand.

This is going to be it for now, it’s a start. It may have helped me, who knows? Maybe there will be another instalment I don’t know yet.

 

 

Why the cakes?  I recently found baking as have many others courtesy of the Great British Bake Off and did you see the final last night? “Invent your own Chiffon Cake”??  Vodka and Orange!

 

This is me Steve Royal.  39 years old.

Have a week.

 

 

 

 

 

TNM stages of mouth and oropharyngeal cancers

TNM stands for Tumour, Node and Metastasis. The system describes

·                             The size of a primary tumour (T)

·                             Whether the cancer has spread to the lymph nodes (N)

·                             Whether the cancer has spread to a different part of the body (M)

T stages

There are 4 main T stages of mouth and oropharyngeal cancer

·                             T1 means the tumour is contained within the tissue of the mouth or oropharynx and is no larger than 2cm (3/4 inch)

·                             T2 means the tumour is larger than 2cm, but smaller than 4cm (about 1 ½ inches)

·                             T3 means the tumour is bigger than 4cm

·                             T4a means the tumour has grown further than the mouth or oropharynx and into nearby body tissues such as bone, tongue, sinuses or skin

·                             T4b means the tumour has spread into nearby areas such as the space around and behind the jaws, the back of the upper jaw where the large jaw muscles attach, the base of the skull, or the area of the neck that surrounds the carotid artery

N stages

There are 4 main lymph node stages in cancer of the mouth and oropharynx. One of these, stage N2, is broken down into 3 sub stages. The important points here are whether there is cancer in the lymph nodes in the neck and if so, the size of the node and which side of the neck it is on.

·                             N0 means there are no cancer cells in the lymph nodes

·                             N1 means there are cancer cells in 1 lymph node on the same side of the neck as the cancer, but the node is less than 3cm across

·                             N2a means there is cancer in 1 lymph node on the same side of the neck, and the node is more than 3cm across but less than 6cm across

·                             N2b means there is cancer in more than 1 lymph node, but none of these nodes are more than 6cm across. All the affected nodes are on the same side of the neck as the cancer.

·                             N2c means there is cancer in nodes on the other side of the neck, or in nodes on both sides, but none of these nodes are more than 6cm across

·                             N3 means that at least 1 node containing cancer is more than 6cm across

M stages

There are two M stages for cancers of the mouth and oropharynx

·                             M0 means there is no cancer spread to other parts of the body

·                             M1 means the cancer has spread to other parts of the body, such as the lungs

Together, the T, N and M stages give a complete description of the stage of your cancer. For example, if you have a T2, N0, M0 cancer, you have a tumour larger than 2cm but not larger than 4cm. There are no cancer cells in the lymph nodes and there is no spread of your cancer to other parts of the body.