It is almost a year since my cancer surgery and knowing it is mouth cancer awareness month, I am chatting to my consultant surgeon at my 6 weekly consultation, about what he does to raise awareness. He shares some of his experiences with running free clinics and receiving ‘dogs abuse’ from Doctors who think he is scaremongering, and of the difficulties he faces getting the support required to set these up. As part of this conversation I casually offer to support him in any of his efforts.
Less than a week later, he leaves a message on my answer phone. BBC South are interested on doing a piece on mouth cancer and want a patients perspective. Will I do it? After a couple of conversations with the communications department of the Basingstoke Health Trust and a BBC producer, I find myself in front of a TV camera.
Up to this point, I have been fairly quiet about my cancer. I haven’t been deliberately hiding it, I know I need to take the time to get physically better, learn from and work through the changes that it brings and to embrace my new sense of self and identity. I also know that I need to find a new job in the New Year and that finding a new role is likely to be more problematic with a recent cancer diagnosis and recovery story tagging along behind me.
So, I take time, writing this blog, going to all the various treatment and support groups, having fun, hanging out and welcoming support from my tribe of great friends while focusing on getting better.
In one morning, I blow the control and management of my personal experiences right out the water. I run starkers, out of the closet with a primal Tah Dah!!
It’s a positive and a negative being a communications expert in situations like these. What is the message and the hook that will have people stop making tea and look at the screen? How will this message be memorable in 30 seconds? What will make people do something different from what they did before (i.e) stop ignoring persistent mouth and neck problems. It is with a dawning sense of dread, that I realise I need to show my “new” tongue and my scars to the good folks of the South of England, to wake them up to hopefully take preventative action. And not even my lovely Craig gets to see my tongue in private.
I am clear about my message – “It could be you” is the hook. I want the audience to know that I don’t qualify in any of the so-called factors they say generates mouth cancer. As cases are on the increase and more research needs to be done on the causal factors – don’t be lulled into thinking “it won’t be me”.
They edit it, of course, so the message is not so direct and I get quite cross when they find a loquacious but officious dentist in Birmingham to come on after my segment and talk about all the old traditional factors surrounding mouth cancer. Grrr.
But as I have also agreed to do a live interview on Radio Berkshire the following morning, I know I have another opportunity. Radio as a medium is very different to TV. A verbal rather than visual hook is required to get people to stop and think. My story becomes real when I talk about telling Roscoe, my then 11 year old son, that I have cancer. Parents are likely to shudder at the thought of having to do this. And everyone can imagine what it would feel like, having to tell loved ones such horrible news. Hopefully this has people booking regular visits to their dentist.
I then go ‘live’ on Facebook to drum up more awareness. Not only am I now naked and out the closet, I am swinging from the door!
I shut my laptop, pack my bag and get ready to support a girlfriend with a values in action workshop. In my handbag is a letter, the contents of which I have not shared with anyone.
It states that my recent breast mammogram results require me to have another mammogram and consultation with a doctor in 48 hours at the Royal Country Hospital in Winchester.
Shit happens doesn’t it?
Surely after the mouth cancer and the removal of half my thyroid, I am done for the year. Surely it is my turn to be well after all the healthy living, breathing techniques, positive mind work, the alternative therapies, vitamins and new knowledge. I convince myself it is nothing, they are being extra careful with me because of my recent cancer adventure.
So I waltz into the Hospital, smiling and positive, up until my left boob is being “squashed and squeezed” and the response to a casual question to the lovely radiographer, is ringing in my ears. She is not able to tell me what is wrong, I need to see the Doctor.
I don’t think I have ever felt fear like this before. Like a menopausal heat wave it works its way from the top of my head to the soles of my feet in a millisecond. And I can’t move as my boob is stuck in a vice! Yup, out of the closet, Tah Dah! now really quite naked and very exposed.
Sent to the waiting room for 20 minutes, I decide to pop to the bathroom to do some deep breathing techniques and star jumps (quite tricky in a small space and in reality more like a hop with two wildly failing arms). A bit puffed, I turn to face the door and see a poster all about poo. It seems quite apt, in this moment, to be looking at various shapes of poo and what they mean. So in the interests of sharing my new knowledge I take a picture.
Knowledge and a bit of levity are often the paddles you need when the shit creek appears. And the ridiculousness of the situation, trying to do star jumps in a tiny toilet with a poo poster on the door, makes me laugh out loud.
Shortly afterwards, the Doctor shows me, on the small screen, my breast lump which thankfully turns out to be a cyst. With the help of a sonogram and a ‘Dot-Dot’ large ‘Dot-Dot’ needle, it is aspirated and gone. More mammograms confirm all is good and I step out on the street.
It’s been quite a 48 hours.
I head home for hugs with my boys.
This is not a cancer to be taken lightly. Its effects are more visible and potentially more debilitating than many others. Removing oral cancer, if it’s caught in time, can leave long-lasting affects on the speech and swallow function, on the function of the jaw and voice box, on neck and shoulder movement and additionally – in my case at least – a significant psychological impact created by extensive scarring to the mouth, neck, arm and stomach and having to learn to speak differently. 
In many cases, mouth cancer survivors have to cope with developing a new self-identity.
We need to take responsibility for our own mouths. Pay attention to ulcers which have not healed within three weeks, red and white patches in the mouth or any unusual lumps or swellings in the mouth, head and neck area. Anything unusual in your mouth, anything that changes and stays changed for more than 3 weeks – go and see your dentist. Specifically tell them you want to discount mouth cancer. Put that thought in their head before they examine you so it’s in their conscious brain.
It doesn’t look serious does it? But it was already a stage 2/3 cancer (I didn’t know this at the time) as it had spread into a lymph node.
