Stage

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.

Stage four.

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.

Eyes wide open

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.

Opt In Image
Support Tommy and Get Stuff!
Become a patron, support Tommy and get exclusive content every month

Like many children's authors, the large portion of Tommy's income comes from holding speaking events and writing workshops in schools - two things he is currently unable to do. It's not all doom and gloom, though. Tommy is still delivering great writing advice - and lots of other stuff, too - via Patreon. From just $1 (about 70p) per month, you can get access to this completely exclusive content AND help Tommy through this difficult time. Sign up now!  Just click on the button below for more details. Your inbox will thank you for it!

Please help by sharing this post...Share on FacebookShare on Google+Tweet about this on TwitterShare on LinkedInShare on RedditShare on Tumblr

32 Comments


  1. Tommy,
    My sister had stage 4 Melanoma that started on her back, spread to 5 lymph nodes, and then to numerous tumors in her brain, one that was the size of almost an entire quadrant.
    She had the lymph nodes removed, as well as the melanoma on her back, and the one huge tumor in her brain. Lots of radiation later and she’s still scanning cancer free. So just know , this is not a death sentence. Do your research, eat healthy(injest healthy), and get support, friends, peers, families, counsellors, it will all help. And so will this blog. Keep up the good fight, I will be standing in your corner of the ring cheering you on!

    Reply

  2. This sucks and I hate it, Tommy. I will come up with better words eventually, but right now I just want to acknowledge that this sucks and I’m thinking of you and your family.

    Reply

  3. Tommy, hi,
    What a crap day you’ve had. But – you’re a day nearer the end of treatment. So, even the crap days take you nearer to your goal. And remember Winnie the Pooh’s words: – “Remember you are stronger than you think and braver than you imagine. ” Not exactly that but something like that!
    My daughter’s counsellor gave her a huge piece of paper and told her to write or draw all the things that worried her on it. Then she could rip it up into tiny pieces.
    I’m glad Sam’s got such good support from school. His teacher sounds nice. And I had some of my treatment at the hospice. So they aren’t just there for one thing, even though I can see why Sam might think they are.
    I found waiting for the treatment to start worse than actually doing it. Once it’s under way it’s nearer to being finished. Has anyone suggested drinking aloe vera juice? Some people say it helps with radiotherapy effects. I used it on my skin and I think maybe it helped. They say you can drink it for the time before your treatment starts in order to help get ready.
    Hope you get some sleep – that’s the other thing – my GP gave me something to help me sleep – was a godsend at times when I needed the rest but sleep wouldn’t come.
    Take care.

    Reply

  4. Hi Tommy – incredibly moving reading about this, and I’m in awe of your bravery and guts. I had a little brush with cancer in my early 20s, so know something of what you’re going through, though of course I didn’t have your family responsibilities then, and I know that weighs hard. However I do, for various reasons, know a little about Squamous cell carcinoma, and although horrible, it’s totally treatable – much ‘better’ (ha) than many other types of tumour. You’ll get through this, and, if you want to write it, there’s a genuinely great book in this …
    Sending you positive thoughts and best wishes.

    Reply

    1. Thanks, Anthony. That’s really good – and positive – to know. I appreciate your kind words.

      Reply

  5. Hi Tommy
    That’s frightening and awful news. I would be crapping myself too. I have no experience to relate; no one I know has gone through this (some have gone through cancer but not this sort). I just didn’t want to read and not leave a comment. Thinking of you lots and sending positive fighting thoughts xxx

    Reply

  6. “Would a counsellor help me? Do I have the same thoughts as everyone else who goes through this shit?”

    A counsellor might well help you, Tommy. If and when you feel ready for it. You don’t have the same thoughts as everyone else, but you do have similar thought-patterns and habits: and dealing with those problematic thought-patterns and habits is remarkably easy with a good counsellor. It can minimise depression quite quickly. Do consider it if you’re not already doing so.

    And let us know what we can do to help you. Sending you love.

    Reply

  7. I have no personal experience to help. I’m just bloody sorry you’re suffering so much right now. And one thing I’m pretty sure: we’d all have the same fears and horrors in the middle of the night – and the middle of the day, probably – if we were going through what you are. Counselling would at least stop you beating yourself up for how you feel.

    I’m really glad you’re sharing all this with us, even though it’s gut wrenching stuff. It helps us keep you in our minds and feel that by thinking of you we might just be helping a tiny bit.

    Good luck with finishing the book. I can see that that is at least something you have some power over, while the disease probably makes you feel powerless in other ways. So, yes, the book is important for that reason. Having said that, I hope your publisher is being *very* understanding.

    Reply

  8. Sending you all the love in the world, my friend. Of course you are scared. Being scared for your family is an awful thing – even worse than being scared for yourself. I am thinking of you and praying for you daily, holding you all in my heart.

    I’d say consider the counselling. I know I *would* bloody well say that, as a counselor 😉 The thing is, counselling can help to get all the huge fears, darkness and bitterness you and the family (including the kids) are feeling out into the open where a bright light can be shone onto them. Everything is more manageable when we deal with it in daylight. It helps, in my experience, if there is someone to rage at (or at least in front of) who is not a family member, who is dealing with their own version of the same crap. You don’t have to be strong or brave in front of a counselor; it gives you space to collapse for a bit and work things out. Happy to chat at any time if you need anything. Massive hugs xxxxxxxx

    Reply

  9. I’m sure the love and adoration of your family will be the greatest crutch for you right now. I truly hope you can lick this thing, and I’ll be keeping everything crossed for you.

    Reply

  10. Dear Tommy,

    First, a big hug for you, and your family from this side of the pond.

    And second, please do go and see that counselor, even it is just one time. Don’t wait, do it now, do this for yourself. The thing is, it can be really pleasant (sorry, wrong word maybe), a relieve and helpful to talk to someone who is not family or a friend of yours. Even when you discuss everything with your wife.

    When I was in hospital the doctor, doing her rounds, asked me “So how are doing today, Mrs. Van Wijk?” and my answer was crying. She arranged a counselor for me (first time I rejected the offer for a counselor from the hospital, I thought that is only helpful to others, I don’t need that) and it was such a relief to talk with her. We even had a bit of a laugh and a cry (that was just me), which was weird as I couldn’t make any sounds.

    You are experience so many emotions and feelings at the moment, it must be overwhelming. And of course, everyone deals with ilness differently, tell me about it. But believe me -an experience expert who almost died- talking to a counselor is part of the treatment here. It’s part of the battle.

    Dikke knuffel / big hug,

    Corine
    xx

    Reply

  11. And this is why it’s a battle, Tommy. There will be days when the enemy pushes you hard, but keep on fighting. Thoughts and best wishes are with you and if there is anything you need, just ask.

    Reply

  12. Keep fighting, we’re all here on your watch, Tommy xx

    Reply

  13. So sorry to hear what a hard time you’re having, Tommy. My husband had several squamous cell carcinomas in his parotid gland, 2 of which were inoperable without paralysing the facial nerve. 7 years later and he’s cancer free, in better health than he was before. Once the treatment starts you’ll know what you’re up against. Good luck! You have so many people rooting for you.

    Reply

  14. Nothing much to add to the comments above, apart from reiterating what someone else has said – in our experience at least, waiting for the treatment to start, and imagining how awful it’s going to be, was in many ways, the worst part of the process.

    I mean, yes, the treatment will make you feel dreadful, but once it all gets under way you can start ticking off the chemo/radio sessions, plus you get the psychological boost of at least knowing that what you’re going through is attacking the illness – especially once you have scans and can actually *see* how the treatment is taking effect.

    And again, just going by personal experience, the emotions you’re feeling seem pretty much spot on. Every little bit of negative information can plunge you into the depths of despair, whereas little snippets of good or hopeful news can lift you into the giddy heights of optimism and euphoria.

    In short, it’s a roller coaster, and although there’s no real way of preparing yourself for that, or cushioning yourself against it, just knowing that what you’re feeling is ‘normal’ (whatever *that* means) can be a help and a comfort at times.

    As ever, Tommy, the very best wishes to you and yours.
    Mark

    Reply

  15. Hi Tommy,

    That’s hard to read, and I’m sure was a million times harder to write. All I can say, is as the other commentators have said, you have to keep going! So please try to keep yourself as healthy as you possibly can and do as many things that you can think of that make you happy.

    So, here are ALL my best wishes (I’ve been saving them up!) to you and your family.

    Cheers,

    Tom

    Reply

  16. It will hurt, Tommy. You know that, we know that. It might be the most painful thing ever. You know that, we know that.

    But this is a temporary pain. and pain goes. In two months, it’s over. With luck, never to hurt again for the rest of your (long) life.

    You know that, we know that.

    Fight.

    Reply

  17. Hi Tommy,
    I’m sending hugs to you and your family, especially huge ones after the news you have just shared. You are a very inspirational guy – keep battling.

    Your friend mentions drinking slow Vera gel to help combat treatment- I drink this everyday for health reasons and have s friend who used it effectively through her cancer treatments, and in fact continues to drink it still.

    I am travelling to see family and friends in Lancs next week and could drop you off a couple of bottles of aloe vera gel to try if you want.

    Just email me your address and when I know exact days and timings I will arrange to let you have them next week.

    Keep battling,
    Julie

    Reply

  18. Oh Tommy, I’m so sorry you are going through all this. The next two months will be hard, but then you will be on the mend. This time next year, it will be a memory, something you have learned from and changed through. Stay strong – and remember, you can only be brave if you’re scared; it’s not brave if you weren’t scared anyway!.

    Reply

  19. Sending love to you and your family x

    Reply

  20. This is awful, Tommy. I don’t know what to say but couldn’t read your moving story without commenting. Lots of luck and love and hope you beat this horrible disease. People do. And I bet the ones who do are fighters like you.

    Reply

  21. Hi Tommy

    New supporter here. I won’t pretend to imagine what you are going through but I know we are all stronger than we know. Best of luck with treatment, you will smash it.

    Sending you lots of love

    Tracey x

    Reply

  22. Really sorry to hear about your illness Tommy. Felt moved to respond because I have some considerable experience of dealing with this hateful disease, diagnosed twice with it, so I have a fair idea about what you are going through. To add to some of the great advice in these posts I would say without doubt the mental torment is the the worst thing to deal with. Chemo is no fun but it is temporary. A good counsellor ( they vary – so if you find its not helping perhaps a different one? ) Also, you need more than a one off session. Effective counselling is about training you how to control unwanted, negative thoughts and giving you strategies that work when you need to them to- in my experience middle of the night when you are desperate for an ‘off’ button. Hypnotherapy tapes where a god send to me and when they didn’t work a sleeping pill. I would also recommend a book called, ‘ Cancer is a word, not a sentence’ by Dr Robert Buckman.

    Reply

  23. I’m so sorry to hear you are going through this, Tommy! Thinking of you and your family, and sending very best wishes from the whole FE crew – can’t wait for you to write for us (and make us laugh) again soon x

    Reply

  24. Thank you so much for sharing all of this. I had cancer 7 years ago, and was originally told I wouldn’t survive. It turned out not to be as bad as they thought, and after an operation and a few months off work I’m completely fine. What struck me most was what an utter coward I really am. I was honestly quite shocked by how much I wept, and how difficult I found it to speak of what was happening to me. Your honest and brave account will help so many people to understand the almost out of body experience – of being with your family and yet apart; tethered to them but floating in a dark cloud. You don’t know me but I’m sending you my most sincere and fierce best wishes at all times. I never had to worry about my income – sick pay is a marvellous thing – so I can only imagine the added pressure and worry of maintaining an income during this awful time. I will donate whenever I can, and hope your many supporters can keep you afloat.

    Reply

  25. Tommy this is truly brutal and so distressing to read. I wish I could say something here that could change things – make things better. I’m heartened to see that other friends’ posts seem to offer hope. All I can say is I’m thinking of you and sending you and the family heartfelt best wishes x

    Reply

  26. Dearest Tommy, really sorry to read this. I trained in counselling recently and wonder if it would help to ask for some strategies from one for managing the pain, fear and (irrational but typically human) guilt. You are understandibly in overload. Counsellors are awfully good at taking some of that load xxx

    Reply

  27. Keep writing Tommy, however shit this is for you, the fact that you have the ballls to confront if and write if all down for us to ingest is a massive deal. I’ve never been so inspired by anyone before. I’m totally in awe of the way you are tackling this bad boy head on and letting us all in to your world, it’s so fascinating and as daft as it sounds I look forward to reading your posts. I know that sounds weird but you’ve got me hooked like a good book. Totally honest.
    When all this is behind you, you’ll have a bestseller to promote! Keep going xxxxx

    Reply

  28. I can’t begin to imagine how you feel. But what I can say is a hospice may not be what you first think. I worked in one for eight years and it was a positive and surprisingly happy place to be. So many people there to help. And so good for the kids. My son was scared the first time he came to visit now he knows what a good job everyone there does. If they offer you and your family help take it. It can be at home. Take care, and fight with all you have

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *