12/03/2016

11/03/2016.

Well, i'm home.

I have been keeping it a little quiet. I myself have been keeping quiet too, but as I understand it, my beautiful wife has been keeping you informed via the Book of Face, which I do intend to look at after I have written this. I'm doing it like this, just so that I can be lazy, I only want to explain what has been going on with me and the world of the cancer, the once.

Here goes.

So at christmas I was told it was back. In January I was told that it was far more serious than they had liked. My trusted consultant, the man whom I have the most faith and confidence with, Joe, called me in to one of the examination rooms. He looked pale. He wasn't alone.

  "Steve, I am sorry.  This is shit.  Because of the shape of the tumour and how it has reformed the outlook is bleak, radiotherapy is not an option due to the amount you have had before."

I was silent.

  "You have two choices now, It is either a massive, severe operation or palliative care."

How severe? was the question, but I cant remember who asked it. The response was scary but masked by medical jargon, I didn't realise how scary it was until I researched it at home.

  "Total Glossectomy, Total Larengectomy and a complete neck dissection."

Fuck.( Researching this indicated that I would no longer be able to use my mouth for anything. Never eating, never drinking, never speaking and never breathing through it again, ever.)

  "Otherwise, how long have I got?" I managed to ask through gritted teeth and watery eyes.

  "Worse case senario, 8months. Best case, 18months, with chemo that could be nearly 22months to 2 years." he was saddend to say.

  "I'll give you and your wife a moment to talk.  Can we clear the room ? " he asked the other staff and they left.

Rebecca and I just looked at each other.Without having to say it, we both knew that I would not be
having the opperation, there was no way I could live like that, I am too busy a person to be a burden and my beautiful wife has enough problems with her own personal medical situation without her having to become my carer.
This was never the plan, the plan was for me, the man that married her, to be the one that does the caring, and I was ready for that, for us to enjoy our senior years together and for me to do what ever I could to keep us going but I was to be the physically strong partner, not the silent blob on the couch, no way could I become that.
As before with this blog, I have found myself writing things down on all manner of different forms of media, and all throughout the tests and meetings running up to the time I was told the cancer
had returned I had been keeping track of my emotions on my tablet pc. The next few extracts are quite raw and I have chosen to share them. They are un-edited and written during a time of unknowns.They cover quite a long period of time, I believe they started mid November 2015 and they carry on to the begining of this month and yes, some of the information has been repeated, I guess using different forms of media and copious amounts of opiates, I tend to forget where I'm at.

Blog from Tablet PC;

      I am coming to terms with my own mortality.

     It's been quite a while now since I've needed to do this and to do this I need to do.

     Next tuesday sees me going back to Poole for a visit to the green clinic and im scared. Again. I'm in pain with my throat or is it my tounge?  It hurts to eat, I have a headache that I can no longer ignore, I am feeling really week and full of fatigue my weight is steady at 9and a half  stone, my tinnatus has returned with furious anger and the psoriasis on my leg has reappeared. What does that have to do with it?  Well,  the chemo that I had to have 3 years ago cleared that up so in my
head that means psoriasis has something to do with the cancer.
     I'm  letting people down, important people whom I love more than I thought possible but if you are a husband, wife or parent, you know just  how much love is possible. Ahh, just take another codeine that'll help with the pain, for now. It does make me wonder how many more I  would need to
take the pain away for ever. I looked into it, apparently it's about 30 and as long as I wash it down with the oramorph I have  at home I should just fall asleep...

     Wimp. Thats just being lazy.

     I think I want Joe to find something next week, to explain why I feel this way. So I know that it is all not just in my head. My head has known for a while now that I might not make 45, don't ask me how, that is just the way it seems.

     3.12.15

     So the trip continues. I'm sat in a waiting room waiting for my turn. Joe did see something, he's not sure what so I will be staying still for half an hour while the MRI scanner checks me out but I
wont know anything until a couple of weeks time, when I'll be seeing him next. In the mean time, before then I shall be back here again next week, for a video swallow test to see why I choke on three quarters of the food I eat, I wonder whats on  the menu? thats on Tuesday, on Thursday I'll be seeing the look on a hygienist's face when she is tasked with the cleaning of the pirates cove, that my mouth has become, 3ish years of saliva gland obuse has taken its toll on my oral cavity, and I guess you
could say that my  mouth is not the prettiest environment to be in, and I would not protest.

     Between times, l have picked up my own tools again, yeay! Thats right, Royal Electrical Services has started trading, so happy to be my own  boss again, don't get me wrong, working for Frank was great, made alot of good friends there and not any enemies, I think...

     Well I had the MRI and now its Tuesday,  I'm about to have a video xray... ohh this is exciting. What is not exciting is having to go to a  funeral after here, good ol ' uncle Ted, Teddy-Edward as I used to very affectionately call him when I was younger, 88 thats a bloody good  innings if you ask me, love you Ted, cheers.

     So apparantly the menu is not great, bland and weird textures so I have just been informed, I guess I'll be having a dirty McDonald's when  I leave here, if I have time before we celebrate the life of a guy whom I, as a kid would ride in his tractor and just like Nizloppi the tool box  would rattle
my bum like berserk.

     Just finished the video xray, ewww, gross. That contrast tasted a bit rank, sweet and rank and its too early for Maccy Dee's so I'm going for a breaky at the hospital canteen, wish me luck, at least I'm in the right place if I do choke.

     Parked in the car park at Poole crematorium and I wonder, what would be said at my eulogy?  "He was a lovable chap happy to help out others, he always looked for the best in people and he believed that he could help bring the best out in people." Maybe?  It's hard to know what others really think about you and they can only really say it after you're dead so you can't answer them back. That being the case it would be more likely they would say, "He was a cunt." Totally possible I have been called this from time to time and by the wife more than most although Jody at FRD would come a close 2nd. They may say the usual niceties,"it's always the good ones that go too soon" or they may tell the truth "he battaled with his own addictions'."who knows?...
   
     ...I won't.

     From what I remember I found Teddy-Edwards cremation to be far more emotional than I expected. I couldn't help but think about my self  in that box. How selfish is that? But that was last week, today it's different. Today I am waiting here in green clinic. Here to see Joe, or one of the team.
Hopefully just one of  the team, if there is more than one in the room when I walk in I think I might shit. Eeww, that would be nasty. All squished in my  particularly old boxer shorts that I adorned myself with this very morning, they've gotten that old that I believe if you tried to give me a  wedgie with these on you would end up with the waistband in your hand.

     Oo ooh,

     I was just called in, but, now I'm back waiting wrong consultant, didn't think I knew the name of him. While I was in there however I had  a quick chat with the lady that filmed my throat swallowing last week, it might be in my head, but she seemed overly concerned that I'm in need of more calories and she has a worried expression on her face.

     Turns out she knew more than she was trying not to let on. Went in to see the correct consultant and he didn't arrive alone.  Shit.  Accompanying him was Karen, a cool sympathetically faced lady and two red shirt consultants. We greet each other take our seats and the  head of Joe's department
sits down within my space and reasureingly places his hands on my knees.

     "There is a questionable, suspicious mass on the back of your tounge. I am quite sure your cancer has returned. We need you to have a biopsy and to have a good look and feel down in your throat."

     My next visit to Poole is on Friday 7.15 am for day surgery, a biopsy.

     So I had the biopsy, in fact I had 7 and I've been unable to eat anything substantial since. Its now Monday the 21st of December tomorrow I'll be back to Poole to have a peg tube fitted then in a weeks time they will tell me what the plan is.

(A break from Tablet PC ramblings)

I never did have the peg tube re-installed, I went down to the hospital to get it fitted but I managed to convince them that it was not necessary as that day was the first day I had been able to swallow anything since the biopsys 4 days previous and we had no idea what the plan was going to be, I didn't want any extra discomfort and that all I needed really was some easy to swallow food, Fortisips. They agreed and gave me around 50 bottles of the stuff, I thanked them and was able to leave the hospital much sooner than I expected, unfortunatly for me this ment that my prearranged lift home was hours away. I know, I thought, I'll catch the bus. I left the hospital and walked up to the bus stop, oh not this bus stop, it doesn't go to Wimborne, I'll go to the next one... Oh, not this stop either, I'll go
on to the next...

When I got to Fleetsbridge carrying my lunch bottles I had worked up a sweat, I stopped at the next bus stop and it cleary said next bus to Wimborne 4 mins, phew, enough time for a Fortisip, as I was quite hungry and some water, my heart was beating hard, good god I'm unfit I thought, forgetting I've got cancer or the fact that I had not eaten anything since last week! Bus arrived, I get on, "to Wimborne Square please."  "Sorry," said the driver "I only go as far as Broadstone." I get off again.
Reluctantly I use my phone to call someone for help, my dad, I didn't want him to get me, I just wanted a phone number of a cabbie friend of his, I  knew the guy lived close to Darbys Corner and my logical brain thought it would make perfect sense for this guy to pick me up from Fleetsbridge and get me to Wimborne, also it shouldn't cost me too much. Alas, that one time I decide to call him, true to form I'm let down, no answer was the reply. I decide in my stupid state of mind to try and walk to Wimborne.

Past Tesco's and up the hill to Burger King, on the other side of the road I see an old friend in her van, feeling really quite tired now I drop one of my bags and try to gain her attention by waving
like some lunatic, alas she dosn't see me. Onwards towards Gravel Hill, I try to keep a good pace, all the time telling myself I can do this, yet all the time I am becomming weaker and weaker.
Its on Gravel Hill that I hit the wall. By now I'm close to my nephews school and I am physically drained, emotionally screwed and all I felt like doing was stepping out in front of a lorry. I collapse against a lamp post, sweat running off my head, panting hard but not getting any oxygen into my body. I feel myself about to fall to the floor and I hear voices calling my name...

"Steve?  Steve. ...  STEVE! Are you ok?"

I look around, and there on the side of the road with his hazard lights flashing was Justin with his beautiful wife Sarah getting out of his car comming to my rescue. These guys have children the same ages as ours and they go to the same schools as ours and they were out for the day with their kids and just happened to be in the right place at the right time for me, I'm not sure they realise how perfect their timing was.

I will forever be in their debt. Thankyou for that lift to Wimborne.

After an hours rest, I calmed down and all was ok once more.

Note to self, you are not as fit as you think you are.

Back to Tablet PC.

     December 29th 2015.

     Lilly just wished me goodnight followed up with "I hope you get well soon dad". Sorry squidge I don't think I can fix it this time.

Oh stop being so melodramatic you wanker!!!

     Trouble is, I'm not. I knew a bloke, he thought he had cancer just like his parents had, took himself off up a track and gassed himself in a car so his kids didn't  have to see him waste away as the
cancer takes hold. I don't want my kids to watch me waste away either, I know why he did it now.

      Is that being melodramatic or rational?
     What would be best? Years ago me and an old friend covered this kind of topic during a hypothetical conversation but years ago I wasn't  married nor did I have children, so the answer was easier,  get on your motorbike and ride into a wall flat out. Maybe.

    What kind of life will it be? Can't eat, can't drink, can't even enjoy a little bit of weed, won't be able to talk and I'll be living in constant  pain. Oh fucking joy. Sorry kids I cannot be around like that. I can't expect you to want to be around me when I'm like that I'll be no good  as a dad thats for sure
you wont want the constant reminder of how your dad let you down as you were growing up, how he let you down by being a weak lameass that couldn't give up the fags or weed.
     Had a long drawn out conversation with the wife a couple of nights ago, today is the 30th it was all about the cancer and what our plan is if  it's spread. The outcome was not the nicest, yet it was necessary and I'm reassured to now know that me and my beautiful wife are on the  same page,
albeit a morbid page.
     Happy new years eve. Yes today is the last day of 2015 and guess where i am, well done, Poole hospital waiting for a chest and abdomen CT scan, this is an exploratory mission to seek out new sites for where the cancer could have spread. I wont get these results till next week, an appointment that I wished I didn't have to have.

     I want to turn it off now. It's February 27th 2016. Pain is high, it has been for a while, daily dose, 6 codene (30 mg) 4 ibuprofen (200 mg)  and 10 to 15 mls of oramorph. The mornings are getting harder to get going into the day and the nights have become full of broken sleep with hot and cold shakes.
     I had been told at Poole that I had two choices, total glossectomy complete with neck diesection or paletive care. That means all neck contents removed, I'll never eat, drink, breathe and speak through my mouth again or pain meds till death but guess what, those caring NHS staff, the consultants and care team that I have been under, hated the fact that these were my only choices and the following week they had me in green clinic for another appointment, it was there I was introduced to Emma King, a surgeon by day and a cancer research scientist by day too also a mother and all round good egg. She opened up a few channels of communication within the global cancer research community
about my case and has had a response that was not expected.
     The Italians offered her a new melanoma drug that might work as the Japanese have had some success with this skin cancer drug using it on lung cancer patients and the Americans have said that they will try and make a vaccine tailored to my DNA and my tumours DNA.
Amazin, actually FUCKIN AMAZIN!!

     So here i am again March the 1st 2016 at Poole hospital having had  an MRI already waiting to go to theatre to have a trachea fitted in case of breathing difficulty after the biopsy and a series of injections into the tumour.

     MRI results show the tumour has grown quite a lot in 2 months it's a T4 again.That would explain the increased pain.

     Ground breaking shit and yes i'm still a scaredy-cat no one knows what will happen next, but I think I'm ready. I know one thing, I can't  keep going with this pain or with the rate at which this cancer is growing. Back in January when Joe first gave me the 2 increadably shitty choices the 2nd option, the one that I had opted for, the paletive care, was set to last on a best case scenario 18months or a worse case  scenario of 8months. Well it being March now, those figures are now 6 to 16
months. 6months or 6 hours I think I'm ready if I die, if that is at all possible. At least the pain and tinatus would stop.

That was all that was on my tablet PC and as I said, sorry for the repetition.

But things have changed, It's the 12/03/2016 I have been in hospital for 8 nights i think?  and I have had 2 Rounds of melanoma treatment which involves injecting the tumour directly so my immune system can see it.

I have more to tell you about the treatment and my stay in hospital so I shall type again very soon, but for now you beautiful people,

This is Steve Royal, guinea pig to cancer research.

Have a week.