Will.i.am Writing

Following yesterday’s appointment with the oral surgery specialist at Blackburn Hospital, two things have happened…

* This morning, I received a call telling me that the tooth extraction and all out assault on the underlying infection will take place on 7th March. That means I can begin taking the 14 days of antibiotics I have on standby. The problem is that they come in capsules, which I can’t yet swallow. So, I’m having to break the little buggers open, mix them with water, and ‘drink’ them via my stomach peg.

On the subject of my stomach peg, I’ll have to go back to ‘eating’ by using those bastard milkshakes again should further treatment be required to eradicate the infection in my jawbone.

I’m really looking forward to that eventuality.

* I’m making a will. Although I presume that, should the worst happen, everything would automatically go to Kirsty and the boys, I really don’t know.

And I’d rather not risk it.

So, yesterday, I ordered one of those ‘Make Your Last Will and Testament’ packs online, and it arrived about an hour ago. I’ll be taking a look at it and hopefully filling it out this evening.

It’s a strange thing to think about doing. I’ve genuinely never considered making a will before. Whether that’s irresponsible of me or not, I simply don’t know. But, with yesterday’s news adding an extra layer of doubt pasta onto the health lasagna of me getting through all this, it was the straw that broke the camel’s back.

That’s a bizarre phrase, isn’t it? Or maybe you don’t think so. But, I do.

Of course, that may be because – up until as late as LAST MONTH – I always presumed the oft-used phrase referred to drinking straws. You know, the stripy plastic things you get with a cold drink.

It had NEVER occurred to me that ‘the straw that broke the camel’s back’ might be a piece of organic straw, as in the dried stalks of cereal plants.

Which would be 100% more likely.

Organic straw, or some form of it, is very likely to be used as either or both bedding and food for large animals, including camels. And it’s not unreasonable to suggest that load-bearing creatures – like camels – would be used to transport said straw from one location to another.

Meaning that there would be such a thing as too much straw for the camel to carry.

Therefore, describing a situation as being a single step too far could easily be explained as being the straw that broke the camel’s back.

Whereas, in the dark recesses of my head, I’ve got some weirdo stacking plastic drinking straws onto camels, presumably to see if they can break a little-known world record for balancing cheap drinking apparatus on and around a camel’s hump until such time as there is an ear-splitting CRACK, and said ungulate collapses in agony to the sand, screaming out in pain.

Imagine how many plastic straws that would take!

Mind you, this isn’t the first time I fell victim to the hidden shadows of my own imagination.

As a teenager in the 1980s, I was right up there with the latest trends, in particular – music. As a result I was, as you can probably already guess, a huge fan of Elvis Presley.

No, really. I was.

I collected Elvis LPs. I had Elvis posters all over my bedroom wall. I even had my Mum stitch the name ‘ELVIS’ into the back of my nylon, sleeveless jacket – like some kind of time-travel sick Marty McFly.

I remember clearly where I was when the news of Elvis Presley’s death was announced, on the evening of 16th August 1977. I was sitting at one end of our long living room in Haddon Avenue in Liverpool, watching TV and straining to hear the news of the King’s demise with the set turned down to its lowest possible volume.

Why was the volume so low?

Because my parents were at the other end of the room while my Mum gave a statement to a female police officer about a flasher who had jumped out in front of us earlier that day.

My sister and I were both with her, and I vaguely remember the incident (although, oddly, not as clearly as I recall listening to news concerning the death of Elvis). The flasher (as we always called them in the UK) was one of your classic sexual fiends, in that he operated the old routine of…

JUMP IN FRONT OF WOMEN AND/OR CHILDREN

WHIP OPEN THE DIRTY RAINCOAT

WIGGLE THE FUN-SIZED MARS BAR

SNARL LIKE A CORNERED BADGER

CLOSE AFOREMENTIONED RAINCOAT

SCAMPER AWAY IN SEARCH OF A NEW TARGET

Good old British traditions, eh?

Where was I?

Oh yes, Elvis…

One of the songs in Elvis’s catalogue that confused me was ‘Wear My Ring Around Your Neck’.

Here it is…

…and here are the specific lyrics which caused my befuddlement…

Won’t you wear my ring around your neck
To tell the world I’m yours, by heck
Let them see your love for me
And let them see by the ring around your neck

You might be able to see where I’m going with this but, for years, I could not for the life of me understand how Elvis could get a ring around his girlfriend’s throat.

Surely, rings are far too small?

To wrap it around a girl’s neck, even a girl with a particularly slim build, you’d have to crush her spine and windpipe to the circumference of one of your fingers.

And, even if a pretty beau could survive such a violent token of love, how would you get the ring there?

Is it forcibly pushed down over the head, or cut apart with a tool such as a hacksaw, then welded back together once the neck had been wrung thinly enough and the two halves were in place on either side?

I promise I was in my 40s before the concept of a ring on a chain entered my head.

And, they let me breed!

So, there you have it. I have a date for my oral surgery, and I’m making a will.

Tommy

(Un)Funny Bone

This morning, I went for a follow-up visit to see the oral surgery specialist. You may recall that, at my first appointment, I was given a small collection of sticks to wedge between my teeth in an attempt to gradually correct my ongoing trismus.

Sadly, today’s session was nowhere near as fun.

It transpires that, thanks to my radiotherapy 18 months ago, I now have an infection deep within my jawbone. The specialist pointed it out on my x-ray, and I was able to see it – nestled beneath one of my teeth on the lower right hand side of my mouth.

But not just any tooth.

Oh no.

This is one of around half a dozen baby teeth I never lost because there was no adult tooth growing underneath it, ready to push it out and take its place. Over the years, I’ve had a couple of these removed, leaving gummy gaps behind. This one, however, stayed.

But not for long.

The plan is to remove the tooth and attempt to eradicate the infection below. However, that won’t be an easy task due to the effects of my trismus (lockjaw, for those of you without advanced medical degrees). They are going to have to remove the tooth via the 1cm gap I can create by opening my mouth.

That’s it. My mouth doesn’t go any wider than that.

It will be like trying to wipe your arse from outside the front door by reaching in through the letterbox.

But, the facial fun doesn’t end with the pulling out of my baby tooth.

Goodness me, no…

You see, if the infection is particularly stubborn, there’s a chance it may result in a jolly complication known as Osteoradionecrosis.

Or, in layman’s terms, jaw death.

HAHAHAHAHAHA!

Basically, this is where the infection fights back.

No, really.

If I’m unlucky (and Bagpuss knows I have been so far), Osteoradionecrosis will lead to the infection burying itself deeper in my jaw until eventually – in the specialist’s own words – it digs a hole out through my face.

There are, thankfully, treatments available should this complication occur.

And they sound such a lark!

One entails me spending time inside a hyperbaric oxygen chamber, similar to the highly pressurised tank used to save scuba divers who have risen to the ocean surface too quickly and are suffering from the bends.

The other option is to remove the affected chunk of my jaw, then try to rebuild it with tissue and/or bone taken from elsewhere on my body – possibly my leg.

Ooooh! I wonder which one I’ll win?!

I’ve got my fingers crossed for oxygen chamber!

Here’s what a single chamber looks like, although there are multi-patient chambers which can hold around a dozen people at a time.

P-A-R-T-Y!

By all accounts, I’d be in there for up to two hours at a time. During which, I’ll be awash with pure oxygen and subjected to up to two and half times normal atmospheric pressure.

WOOHOO!

How exciting does that look?!

But, it’s not all conkers and silly string. The article accompanying this image had this to say about the procedure…

HBO therapy acts through both mechanical (pressure) and physiological (oxygen) components. Reports of early administration of hyperbaric oxygen, alone without appropriate aggressive surgical debridement, were disappointing, showing only an eight percent response rate.

BOOOO!

It may come down to the old saw-saw-grab-dump-chop-chop-slurp-stuff-stitch-stitch-look-like-you’ve-been-chewing-a-boulder-face after all.

Oh, and they’re going to try to fit all this in BEFORE I go under for my lung cancer surgery in a couple of weeks’ time.

Ha!

Thanks again, world!

Identity Theft

I have a new name.

No longer am I Tommy Six-Sticks.

Now, I am Tommy Seven-Sticks…

Although, I have to say – seven sticks hurts.

A LOT.

And, I got a splinter in my lip.

OW!

I think I’m starting to see the drawback with this technology.

But, who am I to complain about it?

Even simpler, who am I?

No, I mean it.

I don’t know who I am anymore. Not really.

WARNING: I don’t usually write airy-fairy existential posts on this blog, but this one is likely to get a bit abstract, transcendental, and possibly even a touch whiny. Click away now if that is likely to offend.

I used to know exactly who I was.

I was Tommy Donbavand – children’s author, former actor and entertainer. I was the guy who clicked with kids. I could wrap a school hall full of pupils around my little finger, have them eating out of the palm of my hand, and several other metaphors vaguely connected to the appendages at the end of my arms.

I could go into a school, bounce around, spout a few crazy ideas, be a bit cheeky and get everyone whipped up about reading and writing – teachers and students alike.

And I loved it.

Then came the cancer.

It tried very hard to kill me, but it didn’t.

Or did it?

I’m beginning to wonder.

Now, before you immediately jump to the ‘you’re still the same person inside’ response, hear me out…

A couple of weeks ago, I went along to the first real public event I’d been able to attend since my health issues began – a conference for indie authors held at a hotel just outside London.

Aside from an hour or so at Sam’s school Christmas Fair, the last time I’d appeared ‘in public’ was a week-long trip to Guernsey where I visited 15 schools over five days, ran a full day of Doctor Who events, and gave an evening talk in the library.

Believe me when I say the Tommy Donbavand in Guernsey wouldn’t recognise the Tommy Donbavand who went to the author conference.

The new Tommy looked much older than having simply aged the two years that had passed. He was frail, and could only walk with the help of a stick. He was not just slimmer, but positively scrawny. And forget bouncing around and being cheeky, the new Tommy struggled to sit upright for the entire day’s worth of lectures. He went back to his hotel room in pain, due to just sitting down.

That’s who I am now.

And I don’t like it.

I’d struggled to understand why being ill was affecting me quite so much mentally. After all, the cancer has only attacked my body – not my mind. At least, not yet.

But now, I think I know.

And this is going to sound VERY flimsy, but I can’t explain it any other way…

I’ve been mourning the loss of me.

I’ve been down because I don’t know who I am anymore.

Despite constant reassurance that I’m still the same person inside – I’m not.

And I never will be again.

But, does that matter?

That’s the question I’m faced with now I understand what the problem has been.

It all came to a head over the weekend.

I discovered that I’d been bottling up my feelings about the return of my cancer. And it wasn’t pretty.

I won’t go into too much detail, but it transpired that I had inadvertently approved a friend request from a spam account on Facebook, as had several other people.

So what, you ask.

Well, this…

I don’t just use Facebook as a way to stay in touch with friends and family. I also use it as a way to connect with people who enjoy the same things as me – such as writing, reading, sci-fi and more.

And, as you know, I’m particularly fond of Doctor Who.

So, when a friend request popped up last week, I saw the person asking for approval had a dozen or so mutual friends with me, and they were all in my Doctor Who circle of acquaintances. So, I approved the request, and thought no more about it.

I’ll admit that I didn’t visit the person’s profile, view their avatar, or examine anything else about them. Which I should have done. But, to be fair, I’m still dealing with the fact that I have lung cancer and my mind is frequently elsewhere.

Then, on Friday evening, I received notification that I had been tagged in a message, and clicked the link to see what it was about. It transpires it was a post by another Doctor Who acquaintance, pointing out that several of us had been taken in and agreed to ‘friend’ this scam account. He was warning us to be careful, and to ‘unfriend’ the account in question.

Only, he didn’t put it like that.

This person posted a picture of the account’s avatar – which shows a teenage girl – and stated that, while those who had befriended this ‘ young girl’ clearly wished to engage in intimate relations with her, we were all going to be disappointed as she wasn’t real.

Then he listed those who had fallen for the account by name, including me.

In short, he was insinuating that I wanted to engage in sexual activity with a teenager, which is why I had approved the request and not simply because it had a dozen or more mutual friends (those who had already been tricked).

I was furious, and insisted he remove my name from the post immediately.

A request which was denied.

I explained, via private message, that my reputation as a children’s author was extremely important, and that I didn’t want anyone to take his comments the wrong way.

He replied to say I shouldn’t have accepted the friend request in that case.

I agreed, explaining – again – that it was an accident, and that I had now blocked the user, but that still left his post insinuating I had befriended the person for nefarious reasons.

And, once again, I insisted he remove my name from the post.

Again, he argued. And then a friend of his joined in. Together, they continued to claim that if a parent or teacher of one of my readers saw the post and reacted badly, that it would be my fault.

And so, it went on.

From the time I sent my first message asking for my name to be removed from the post to when the person behind the deed finally did as I asked was over eight hours.

I’d had eight hours of stress that I really didn’t need.

And, by the end of it, I was in tears.

But not just about this.

Everything that had happened since the CT scan I had just before Christmas came rushing to the surface, and hit me.

Hard.

And that’s when I knew what my problem was.

I was a frail, scared, 50 year old man in tears because I was trying to protect a version of me that doesn’t exist any longer.

Why was I even bothering? It’s not as though I can go back into schools and pick up from where I left off.

Those days are gone.

And this new battle with cancer can only help cement that.

But…

I feel slightly different today.

I woke up feeling more optimistic than I have done for weeks.

I had a brief chat with a friend online last night. A new friend I first met in person at that author conference a few weekends ago.

A friend who has only ever known this new me.

He doesn’t know the Tommy Donbavand who used to cause classroom chaos.

He only knows the Tommy Donbavand who has recently started to write science fiction novels for the Kindle.

And he likes that guy.

You know what?

I reckon I could grow to like him, too.

Yes, he’s different. He’s calmer, for one thing. He has to be.

And he sees life in a different way. He knows just how precious it is, and how important it is to spend as much time as possible with his wife and sons, his brother and sister and their families, his friends.

And what if…

What if this new life is a promotion, rather than a demotion?

What if it isn’t purely the loss of one way of living, but the opportunity to begin another?

What kind of Tommy Donbavand will I be then?

Let’s find out…

The Results Are In

After several days of ‘phoning around and chasing for answers, I’ve just received a call from Paul, a nurse from the chest cancer department, to discuss the results of my PET scan.

He explained that the tumour they found just before Christmas glowed bright red in the scan, revealing itself as definite cancer. There were also a number of lymph nodes which are showing abnormalities.

While they’re not ‘glowing’ like the tumour, they are a cause for concern.

So, here’s the plan…

After the weekend, I will be having a lung function test. I was due to have that two days ago, on Monday but, thanks to a heavy cold and chesty cough, I wasn’t able to have the test done.

I need to be well enough this time.

After the lung function test, I will be going into surgery shortly afterwards.

The surgeon will remove the tumour, and the lymph nodes of concern.

Bizarrely, The Lymph Nodes of Concern was the name of my Radiohead tribute band in college.

Once they’ve been removed, the tumour and lymph nodes will be sent off for testing to discover if they are connected to my throat cancer, or whether I’ve been lucky enough to contract two separate types of cancer in under three years.

Yay, go me!

Have you noticed I’m making jokes?

Yeah, you have.

And you probably know what that means.

I’m scared.

Really scared.

And that’s strange.

I knew this was coming, but being given the details has knocked me flat. Almost as though this all might have been some bad dream, and that I might wake up to find I didn’t have to go through this shit all over again.

But, it’s not a dream.

Not even a bad one.

Cancer really has come back to carry on from where it left off.

To try to kill me.

Again.

Bra-vo!

Last week, I wrote and published a blog post detailing some of the experiences I have both enjoyed and endured while visiting schools to teach creative writing, and talk about my work as an author.

That post proved to be very popular, and quite a few people have contacted me to ask if there are any other school events where unusual or entertaining moments happened (there are!), and if I would share those as well (I will).

So, hang on to your pencil cases for a second clutch of Tommy’s School Visit Tales…

We’ll begin with an event at a library somewhere in deepest, darkest Lancashire (I won’t say where, in case someone from the school concerned somehow recognises themselves!)

The event itself went well and, afterwards, there was a long queue of pupils eager to get their books signed. As I mentioned previously, I try to have a little fun with each of these readers as they step up to the table.

About halfway down the line was a young girl of around 8 or 9 years old. As usual, I did something silly when she tried to hand over her book. In this case, I briefly pretended to have no idea why she was giving me the book, and repeatedly insisted she explain the process of the book signing to me.

She giggled, as she did this. Then, when I gave in and finally ‘understood’ the situation, I accepted the book and the conversation went something like this…

ME: OK, what’s your name?

HER: (I can’t remember, so we’ll say something like…) Rachel.

ME: (Writing a comment before signing) To… Rachel…

HER: I’m very good.

ME: Are you?

HER: Yes! I’m very well behaved.

ME: That’s great!

HER: I’m no trouble at all.

ME: I’m delighted to hear it.

HER: And, my mum’s really pretty.

ME: (Cautiously) Is she?

HER: Yes. She has a lot of boyfriends.

ME: (Even more cautiously) Er… that’s good.

HER: But, not at the moment.

ME: That’s a shame.

HER: So, she’s single right now…

ME: Er…

HER: And I’m really well behaved.

ME: –

HER: She’d love to get married…

ME: –

HER: I could be a bridesmaid!

ME: NEXT!

On the subject of grown-up women, I got into a lot of trouble – TWICE – thanks to a silly trick I used to do during my school events.

I would profess to be able to do magic, and request the assistance of a female teacher from the audience (although I never put it like that, I’d choose a victim, er… assistant beforehand and point to her saying, “Miss, could you come up and help me with this, please?”)

Once the teacher was standing at the front of the hall with me, I would produce two handkerchiefs and tie their ends together, explaining that I could magically get these to safely pass through skin and bone.

Once I had tied them together, I would tuck the knot into the front of the teacher’s top, then stand behind her and take hold of the two loose ends. Now I’d proclaim I could pull the two handkerchiefs through the teacher’s neck and out the other side, without harming her at all.

By this time, some of the pupils – and possibly even the volunteer teacher – would begin to get a little nervous.

All the better for what was to follow…

I’d build up the trick, then get the kids to shout a magic spell (usually ABRACADABRA), at which I would pretend to pull the ends of the handkerchiefs back through the teacher’s neck.

Instead, I would simply pull the two ends apart over the teacher’s shoulders, causing them to pull out of the front of her top – to reveal a bra hanging between the two colourful cloths.

Obviously – the bra was hidden inside one of the handkerchiefs, which was actually two identical pieces of material sewn together to provide a secret space inside.

It always brought the house down – especially when I began to panic and apologise to the teacher as she made her way back to her seat, usually laughing as much as the pupils and other members of staff.

Usually.

The first time this trick got me into trouble was at a secondary school in Nottingham.

The show was going well, and then I chose my victim (I usually did this as they came in and sat down at the start of the session; I tried to pick someone with a high crew neck top as tucking a pair of knotted handkerchiefs into a deep cut v-neck could look pretty dodgy).

On this particular day, I wondered briefly why virtually all the other staff members took a sharp intake of breath when I chose my victim from the audience, and it really should have warned me that I’d not chosen wisely. But, in the excitement of the moment, I ignored it.

I did the trick, and the kids loved it. They really laughed.

Some of the braver staff members laughed, as well.

Most of them didn’t.

Someone who didn’t laugh – at all – was my assistant.

Nor did I after the event, where three separate teachers took me aside to warn me that I’d ‘picked the wrong person for my bra trick’, that she ‘wouldn’t be happy’, and that she ‘had no sense of humour whatsoever’.

Sure enough, she complained.

But, not to me, or the person who had booked me for the event.

No, she wrote to the managing director of my publishers.

Thankfully, they’d seen me execute the trick on many occasions, and they loved it. But, they had to respond, and told me so.

I had to write a letter to the teacher concerned, apologising for my actions and the negative effect I’d had on her day, week, and possibly entire career.

But, I got over it, and continued to include the trick in my show. Although, my publisher did suggest I temper the trick by choosing a male teacher from that point onwards.

‘Cos yeah, revealing that a male teacher wears women’s underwear beneath his clothing in school is a much better idea.

But, then came Scotland…

In March 2010, I was thrilled to run an entire week of events around the greater Glasgow area with the wonderful people at the Scottish Book Trust. We visited two schools per day, Monday to Friday – one morning, one afternoon. And we were a huge hit everywhere we went.

Well, almost everywhere.

On the Thursday morning, the bra trick backfired again. Although I didn’t know it, and neither did my two colleagues from the Scottish Book Trust, until later that day.

On Thursday afternoon, we pulled into the car park of our next scheduled school, and were busy unloading the car, when the headteacher marched over to us and insisted that we pack up and leave.

We weren’t being allowed to perform for her pupils.

Why not?

Because the head of the school we’d been at in the morning had telephoned her over lunchtime to claim my show contained vulgar material that was inappropriate for audiences of children.

I was utterly gobsmacked, as were my two minders.

Especially as the head didn’t specify which part of the show was inappropriate. Because she didn’t know.

The other head hadn’t told her about the trick.

Because she hadn’t seen it herself.

What had happened was this…

The teacher I’d played the trick on found it funny. But one of the OTHER teachers didn’t. So SHE went to the head to complain. The head accepted the unhappy teacher’s comments without question, and decided to ensure no other impressionable young darlings would be subjected to my hour of pure filth and, having a copy of our schedule, had taken it upon herself to phone ahead to warn the next school.

Thankfully, once I had explained the situation and promised not to include the trick in this show, they allowed us to go ahead with our performance and, once again, it was a huge success.

But, that was the day I finally decided the trick was more trouble than it was worth, and I dropped it permanently from the show.

I haven’t performed it in the eight years since.

If you want to see the trick in action, you can see it in this video footage I took of the Scottish Book Trust tour. It will pop up again and again throughout. However, I won’t tell you which of the schools included decided to demonize me.

Oh, I’ve just remembered a fun little side story – again set in Scotland, but before I abandoned the trick…

I was north of the border visiting schools for a few days, all arranged by a wonderful bookshop I’d been working with on and off for a few years. At each school, I did the bra trick, and it went well.

On our final evening, I was invited out to dinner with the bookshop’s owners and their staff, to celebrate a successful few days. During the dinner, one of the shop staff handed me a present. I opened it, and discovered it was a bra.

A rather large, bright red, frilly, underwired bra.

Of course, it was a joke gift. The staff member claimed the bra I was using in the trick had far too small a cup size, and that I needed to replace it with this bigger, sexier bra for comic effect.

We all had a good laugh!

There’s actually a reason why the trick uses a small-cupped bra; it has to hide within the folds of the secretly adapted handkerchief and not show itself by adding any bulk.

But, I didn’t want to spoil the fun, and I accepted the present in the spirit with which it was given.

Then, after the meal, I went back to my hotel room to pack my case for an early train the next morning.

I completely forgot about the bra until, back at home, Kirsty was unpacking my case for me – and found it.

I’m sure you can imagine the resulting conversation.

Thankfully, she saw the funny side.

Eventually.

Tommy

Wooden You Know It

Well, I went for my appointment at Burnley Hospital’s Oral Surgery department to see the Maxillofacial specialist – except I didn’t.

See her, that is.

She was off sick.

But, I did get to see a registrar instead. Who was lovely. Although she hadn’t read any of my file, and relied solely on what I told her about the last two years as the basis for the appointment.

Which was fine.

Except for when she mis-heard me say I had my first lot of cancer treatment 20 months ago and thought I’d said two months ago. Which changed things a bit once I’d clarified the situation.

Anyhoo…

She wanted an x-ray of my jaw, which they did there and then in the department. I had to stand upright, teeth biting down on a bit of plastic to keep me in position. The radiographer aligned the bottom plate of the machine under my chin, but wasn’t satisfied with how upright I was standing, so he kept pressing the button to nudge it up.

He nudged, and he nudged, and he nudged.

You know that scene in the first Star Wars movie, when Darth Vader strides onto Princess Leia’s transport ship, grabs the captain by the throat and lifts him into the air so that his legs are dangling a foot or so off the ground?

That.

Bugger me, it hurt.

Once the x-ray was done, I went back in to see the registrar who informed me that I have an infection in my lower jaw.

Maybe.

Or…

It might be scarring because of the radiotherapy I had two months ago.

No, remember? I told you it was 20 months ago?

Oh, yes!

So, is it an infection, or scarring?

She didn’t know.

But, she knew someone who would…

The specialist.

She said she would make me an appointment to come back to see her in two to three weeks.

In the meantime, she would help me to exercise my jaw and stretch out the spasmed muscles causing my trismus.

Remember in my previous post, when I showed you the image on the gadget that fits between your teeth and gradually cranks them apart, forcing the muscles to stretch out?

Yeah?

Well, she gave me a bag of wooden sticks.

You know, the ones the doctor uses to press down on your tongue then tells you to say “Ahhhhh!”

I got a little bag of those.

About 12 of them.

The plan is that I have to see how many of them I can jam between my teeth.

No, really…

Then, when I think I’m ready, I have to wedge another one in there to work the muscles.

The plan is to be able to cram all 12 sticks in there at some point.

Yep.

After weeks of pinpoint laser treatment, and litres of expertly mixed chemotherapy drugs – I now have to jam big ice lolly sticks in my mouth like I’m going for some bizarre world record.

Maybe I could force them all in while riding a glow-in-the-dark unicycle, juggling gluten-free hedgehogs and wearing a beard made from cross-eyed bees.

Perhaps then I could finally get to go on Record Breakers.

Where I’d almost certainly be arrested for punching Norris McWhirter in the throat.

While clutching my car keys in my fist.

Is he still alive?

I know his twin brother isn’t. Partly due to his extreme right wing views coming back to bite him on his white-power, fact-filled arse.

Where was I?

Oh yeah… sticks.

This’ll be fun.

Tommy

Merry Trismus

Try this…

Rest the ‘fingerprint’ part of your index finger on top of your front lower teeth, as though you’re about to bite down on your finger.

Now, lower your top teeth until they touch your fingernail.

That distance is somewhere between half and three quarters of a centimetre.

That is the WIDEST I can now open my mouth.

It goes no wider. At all. I can’t force it wider, no matter how hard I try.

Thanks to something called trismus.

Trismus is lockjaw. Caused by a tightening of the muscles used to move your lower jaw, it reduces your ability to open your mouth wide enough to pass standard-sized pieces of food inside.

It can also severely affect these fun activities:

  • Chewing
  • Swallowing
  • Talking
  • Breathing
  • Brushing

In my case, all of those have been affected.

Trismus is caused by intense blasts of radiotherapy to that area of the face and neck, after which the ability to open your mouth lessens over time.

Imagine, for a second, trying to eat when you can only open your mouth half a centimetre wide. It would be a struggle, wouldn’t it?

Trust me, it is.

Trismus severely limits the types of food I’m able to eat. Basically, whatever I eat needs to be flat and thin. Crackers are fine, as are thin slices of cheese or meat (although, once past my teeth, meat is very difficult to swallow thanks to the added complication of lymphedema causing my throat to be swollen and painful).

How lucky am I?

I can still manage Weetabix if it’s crunched up, if I use a teaspoon to eat it.

Cookies are possible, so long as they’re no more than half a centimetre thick. Any more, they just won’t go in. I bought some cookies while in London at the weekend, but they’re just too thick to fit between my teeth.

Can trismus be cured, I hear you ask?

Possibly. Sometimes, the muscles can be stretched over time with the use of a wedge-like implement that fits between the teeth and, essentially, cranks the jaws apart.

And, yes, that is as painful as it sounds.

There’s also the possibility of injections into the muscles to stop them from spasming. Those injections are filled with botox. So, even if they don’t work, the good news is that my lower jaw will look years younger than the rest of my face.

The final – and most severe option is surgery. Surgery to peel back the skin of your face, detach your jaw, and set it to open wider, once it has been wired shut long enough for the cuts and stitches to heal, that is.

I have my first appointment to begin one of these processes this afternoon, with the Maxillofacial department at Burnley Hospital. (I was due to begin treatment towards the end of last year, but couldn’t because I was suffering with a series of infections in my stomach PEG, causing me to be too unwell).

I am NOT looking forward to it.

But, I WILL let you know how I get on.

Tommy

PET Scan Results

A brief update on the PET scan I had recently…

I was originally told the results of the scan could take as long as a week to arrive but, as we rapidly approach the two week mark, I still haven’t heard anything.

So, this morning, Kirsty called my oncologist’s office and spoke to his secretary. She said they have now received the results, that Mr Morar has reviewed them and has met with the chest specialist to discuss them, and that I should receive a date for an appointment in the post soon.

That’s it. No other news to share, I’m afraid, as I don’t have any.

Tommy

The Real Me

This weekend, I travelled to and attended 20Books London, a conference for indie authors in all stages of their careers, with the emphasis on sharing information and helping each other to succeed. To quote the wonderful folk behind the movement: ‘A rising tide floats all boats‘.

It was very much a weekend of firsts…

The first time in two years I’d driven more than a few miles for hospital appointments or for the school run. The first time I’d stayed away from home, aside from when I’ve been admitted to hospital. The first time I’d mixed with a large group of people since I’d been forced to give up the school visit side of my career. And, the first time I’d met new people who didn’t know me pre-cancer.

I was well and truly outside my current compact comfort zone.

Kirsty insisted on coming with me, as I hadn’t attempted any real driving on my own since all this cancer nonsense began. That meant Sam came along, too (Arran stayed at home to finish a couple of projects for college). The plan was that Kirsty and Sam would head out to enjoy touristy stuff each day, while I went over to the hotel where the conference was being held to have the real fun.

However, that plan didn’t quite work out…

The day before we were due to set off – last Thursday – Sam fell ill, which meant he suffered with a chesty cough, nasty head cold, headaches and the shivers all weekend. As a result, he and Kirsty spent both days stuck in the hotel room. But, they made the best of it and took the opportunity to simply chill out and enjoy having nothing to do.

I, on the other hand, had lots to do…

The drive down to Sunbury, where we were staying, on Friday evening was tough. As I mentioned earlier, it was the furthest I’d driven since first being diagnosed back in March 2016. By the time we got to our hotel, I ached all over. I hoped a good night’s sleep in bed would help me to recover, and it did – once I’d managed to get into the bugger, that is.

This was another first for me: not sleeping in a low hospital bed either at home, or on a ward. While the bed in the hotel room was comfortable, it was also quite high. And, I didn’t feel confident enough to ask reception for a step-ladder to enable me to get into the thing.

Kirsty offered to help me get in and out of the bed but, as I knew I would be getting up a couple of times in the night to visit the bathroom (a little-mentioned result of my sudden weight loss is that I’m now the proud owner of a bladder the approximate size of an underdeveloped grape), I didn’t want to have to wake her every time I needed to pee.

So, I took to using a combination of running (well, staggering comically at a pace marginally greater than walking) and jumping in order to get into bed, and what I can only describe as ‘roll off the edge and pray I was able to land on my feet’ as a way of getting back out.

This mostly worked, although it did result in me slamming my face into my pillow a few times, and I fought to recover from buckling knees in the dark when executing my ‘drop and flop’ method of getting up again.

Bedroom gymnastics (and not the giggly, squishy, ketchup-smeared variety) aside, the rest of the weekend went relatively smoothly. I made it to the conference venue safely on both days, where I met my stand-in carer for the event – none other than my ol’ mucker, Barry Hutchison! It was the first time Barry had seen me since I’d fallen ill, and he did a great job of masking his horror at the way I now look.

There aren’t many mates who would wait until they were alone before bending double, sobbing and vomiting.

He’s a keeper.

I struggled to sit upright for the entire day, and was forced to leave early on Saturday as I was in quite a bit of pain. I forced myself to stay until the end of the day on Sunday, but paid for it later.

And I wasn’t really able to enjoy the wonderful spread the venue laid out for lunch each day. I can’t do sandwiches, and I didn’t want to have to find a quiet corner where I could pour milkshakes through my stomach peg. Not because I’m embarrassed about doing that or, anything…

No, that’s a lie. I am embarrassed about it. Really embarrassed.

I know I have no reason to be. I know it’s a normal after-effect for someone who has been through throat cancer and the resulting treatment – but I just don’t want to feed myself liquid nutrients via a stomach tube in a public setting.

So, I loaded up on the bits of food I could digest – crisps, cheese and chocolate chip cookies.

Which also earned me plenty of weird looks.

Then I had Weetabix when I got back to the hotel.

The conference itself was fantastic. I learned a lot, was wonderfully entertained and, best of all, I met some incredible people – some of whom I ‘knew’ from our interactions online, while others were fellow writers there for the same reason as me. They wanted to progress in their career as an indie author.

I just wish they’d got to meet the real me.

That may sound strange, but it’s an issue that’s been on my mind a lot recently. When I meet someone new, they see me frail, stooped, struggling to speak, and using a walking stick to get about. That’s so different to the person I was just two years ago.

And not just physically.

In addition to looking a lot older, I now feel older. No, not just ‘older’…

I feel old.

I feel washed out. Like all the fun of life has gone away. Where once my mind would be a pinball machine of ideas and opportunities, it’s now a straight-laced list of medication, appointments, pain, discomfort, and working out how much writing I’ll be able to do before I can no longer sit at my computer.

And I hate it.

I cope with it – with the help of Kirsty, Sam, Arran and the rest of my family and friends. I deal with it as positively as I can. I work at it, finding techniques that will ease the aches, pains and worries.

But, deep down, I hate it.

I won’t be the same again.

Now, I know what you’re thinking, and what some of you will say in the comments below this post. That I need to stay positive and work at getting the old me back, and that it’s only a matter of time until I’m well again and back to normal.

But, that’s not true.

Even if I completely recover from all of this, and start bouncing around again, I still won’t be the old me.

This cancer bollocks has changed me for good.

Yes, there will be a time when my days are not ruled by regular painkillers, daily medication to keep my weak and weary body going, and when eating and speaking will no longer be a struggle.

I’ll put on weight, build up my muscles and gain strength, I may be able to correct my stoop and, eventually, walk without the aid of a stick.

But I still won’t be the old me.

Not inside.

During a discussion about this at the weekend, Barry put it best. He posited that I’d been through a decade or more’s worth of illness and bad luck in the period of – at this point – just two years. He said I’m bound to look older, and bound to feel older. Because cancer has changed me.

am a very different person now.

Even though I don’t want to be.

Please don’t think I’m not keeping a positive outlook. I am. I face every day as the challenge it is, and set out to slam-dunk it (or, in the case of hotel beds, dive-plummet it). I’m nowhere near as depressed about all of this as I was a year ago, even on the bad days.

However, I have to face the facts as they are.

The old me has gone. Forever.

And I miss him.

Tommy