OK, this is probably going to be a tough one to read. It certainly wasn’t easy to write. And I promise I’m not trying to make it all doom and gloom. Just being honest.
At my request, I wasn’t told what type of cancer I have, or at what stage it was when I was first diagnosed. I simply didn’t want that stuff playing on my mind.
However, as Kirsty and I have come to fill in paperwork for PIP funding and other available benefits, the forms have asked for detailed information. And so, I had to email my Macmillan nurse for the details.
She got back to me this evening.
Ready? I have Squamous cell carcinoma right tonsil and tongue base T4 N2b M0.
T4 N2b M0.
Individually, those codes are reasonably innocent…
T4 refers to the size and spread of the original cancer, and that it is present in my tissue and bones.
N2b means it has spread to two lymph nodes, up to a size of 6cm.
M0 says it hasn’t spread to my lungs, brain or other vital organs.
Together, they mean I have stage four cancer.
The worst it can possibly be.
The news has hit me hard. Just when I thought there was nothing else that could land a punch.
This is why my cancer is inoperable.
Or at least – inoperable without removing my tongue and a good portion of my inner mouth. That would render me unable to talk or eat naturally.
I spent a lot of time crying tonight while Kirsty held me.
I don’t want this. I don’t want this for me, or my family.
Obviously, I haven’t told the boys. They’re scared enough as it is.
Sam gave me a cuddle earlier and he accidentally pressed his hand against my stomach peg. I winced in pain, and he ended up in tears.
He thought he’d really hurt me.
I had to pretend he hadn’t.
The head teacher at his school is concerned for him, and pulled him out of class for a chat today to see how he’s been getting on. They’re prepared to arrange counselling for him if it’s required.
I was visited by the district nurse today, who offered the same thing for him….
“Someone can come out from the local hospice and talk to him.”
No, no, no. Please, please don’t let him hear the word ‘hospice’. He may only be 9 years old, but he’s smart. He knows exactly what a hospice is for. If he hears that word, he’ll jump to all the wrong conclusions.
She offered me counselling, too.
I said I wan’t sure. That I’d think about it.
I’m still thinking.
Would a counsellor help me? Do I have the same thoughts as everyone else who goes through this shit?
What, when it comes down to it, am I worried about?
I’m forcing myself to think here…
I’m not worried about dying. At least, I don’t think so. I’ve been assured that my cancer isn’t a death sentence.
And, even if it was, I wouldn’t know anything about it if I died.
But it would destroy Kirsty and the boys.
Shit, this is hard.
I’m worried about the treatment. The six weeks of combined radiotherapy and chemotherapy. It’s going to hurt. A lot. And I’m scared.
Quite honestly, I’m crapping myself.
I start my radiotherapy on 18th April – two weeks from now.
Talk about a countdown. This one will be a killer.
Pardon the pun.
How will I feel the night before it all begins?
I don’t dare imagine. But, I’ll be able to tell you all in just under a fortnight.
Watch this space.
I’ve got my third appointment for my tooth extraction. 7.30am this Thursday, 7th April. That could well knacker the rest of the day for writing.
I know what you’re thinking. “So? Your health comes first.”
No, my family comes first. I have to finish this book so that I don’t risk losing the rest of the series.
Two weeks before my therapy starts. Then, maybe two weeks before it all kicks in and knocks me for six. That gives me about a month of writing time.
I have to make every day count.
Do other people with cancer have these worries?
Probably. I’m no-one special.
I wonder why it stops at four?
If my doctor had found this earlier, instead of thinking it was first mumps, and then a throat infection, what stage would I have been at?
How long have I had this thing?
I’ve had bad throats, chest infections and pneumonia for around four or five years now. Has that been this bastard all along?
The consultant said pneumonia can be caused by inhaling small fragments of food. This happens when you can’t swallow properly and lapse into a coughing fit.
I’ve been doing that for at least the past four years.
For a while, whenever I ate, I ended up coughing. Sometimes to the point of blacking out. That’s called cough syncope, and it happens when the heart suffers a lack of blood either on the way in or the way out – both meaning a lack of blood to the brain.
And bang – out you go.
I remember waking up to Kirsty thumping me on the back, shouting my name, presuming I was choking on my dinner. Arran was crying, and Sam was panicking, screaming “Dad! Dad! Oh, God! Dad!”
That was about four years ago.
Was that when this all started?
Have I had cancer for four years?
Does it really matter?
I’m here now.
And so is the cancer.
It’s not even midnight yet, and I can already feel any hope of tonight’s sleep slipping away from me. My mind is racing, and I know it won’t stop.
It very rarely does.
It’s a genuine thing; a type of hyper-activity apparently. Where the brain doesn’t shut down as it should at night.
It has a few bizarre side effects. The main one being is that I occasionally sleep with my eyes open. My Dad found me doing just that in my cot when I was just a baby. That was probably the first time.
It scared him!
I stil do it from time to time. I know because I wake up with sore, red eyes.
I hope Kirsty doesn’t wake up and catch me doing it. Not while all this is going on.
My depression is lurking again. I can feel it, like someone pulling a curtain inside my head. Making it dark inside.
I can’t let it take over. Although it would be very easy right now just to crawl into bed and stay there, sleep or no sleep.
Just not get up again.
But, I can’t do that. I have to stay positive.
I’m just not sure I know how.