Monthly Archives: November 2016

Changes created by the cancer adventure, General Musings, Life change, Metaphors and Stories

The Poster ‘child’ and Poo

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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.

blue-lips-mouth-cancer-awareness-1144x762Up 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.

tah-dah-1In 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.

radio-imageBut 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?

star-jumpsSurely 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.

radiography-image

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.

image

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.

Changes created by the cancer adventure, Life change

Saying ‘Aaagh’

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Today I went for my first ever Breast mammogram.  I am constantly amazed by how fortunate we are to have our National Health Service and for this breast screening to be free.  However, it turns out that many women do not turn up to the screening service, particularly the younger age group (the NHS is now offering screening services for a randomised group of women aged between  46 and 50).

pink breast cancer awareness ribbon
pink breast cancer awareness ribbon
This 6 minute test is undertaken by highly trained, caring and compassionate women, normally in a location where it’s easy to park. It’s so efficient I was in and out of the car-park within 30 minutes.  Breast cancer awareness is everywhere.  From Hollywood superstars, to business leaders, friends, Mums, daughters – the proliferation of pink cancer ribbons and fund-raising is huge. As is, unfortunately, the number of people we know and care about being affected by it.  Why take the risk and skip your Mammogram?  It’s 6 minutes of ‘uncomfortableness’, yet potentially  months and years of peace of mind.

So if people don’t turn up for mammograms for a cancer that is so widely known and prevalent, just consider the Herculean task of waking people up to the potential of mouth cancer.

In the UK, November is designated mouth cancer awareness month.

mouth-cancer-ribbon

Mouth cancer is on the increase;  by 39% in the UK in the last decade and by 92% since the 1970’s.  In my small friendship circle alone,  I know 3 other women who’ve experienced it and one lovely, gentle man, who has died of it. More people die from mouth cancer than cervical cancer and testicular cancer combined. Last week my dentist told me she’s just referred a 19 year old teenage boy showing all the signs of mouth cancer.

sam_0493This 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. img_6937 In many cases, mouth cancer survivors have to cope with developing a new self-identity.

Many of the populace – if they happen to be aware about mouth cancer at all –  figure it’s not going to happen to them.  Particularly if they don’t smoke, drink only occasionally, eat a balanced, healthy diet, have never had the HPV virus, are female, are fit and healthy and are under 50.

I was one of those people.

These factors were the reason that my dentist discounted mouth cancer for 4 months – and she is a great dentist.  Today,  as I type, a 47-year-old, fit, healthy and gorgeous woman is undergoing a 10+ hour operation because  4 different dentists misdiagnosed her mouth ulcer as being caused by a wisdom tooth.

mouth-cancer-check-2016-a4-downloadWe 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.

Here is what to do to check your mouth – it will take you less than a minute.  Do this in good light and pay attention to any changes

8-step-oral-cancer-screening

This picture is my mouth cancer, the day before my operation.img_6703 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.

As part of my monthly check up I discuss this lack of awareness with my Maxillofacial consultant surgeon.  He does all he can to raise awareness and catch people early.  He doesn’t want to sit in his consulting room, face a frightened patient and say “you’ve got cancer”.  He’d like to watch his young son play his football matches and read him bedtime stories, instead of standing in an operating room for over 12 hours conducting microscopic, intricate surgery to remove cancers that could have been treated differently if caught earlier.  His dedication is inspiring, admirable and his frustration palpable. I always know  when he pushes back his chair and runs his fingers over his head,  he’s stressed.  I’ve seen him do this enough times in the past year to know this pattern.

mouth cancer risk factors
mouth cancer risk factors
So many people have asked me, what causes mouth cancer.  The official line is smoking increases your chances as does heavy drinking.  If you’re overweight, eat rubbish, don’t exercise, have the HPV virus, are over 50 and male, you’re much more likely to be in the target zone.

But given none of this applies to me, I’m left with seeking different answers.  So here is my theory, based on my extensive reading and research over the last year.  In addition to the list above, pay attention if you are:

  • Stressed, and have been stressed for a long period of time;
  • Heading towards burnout (including feeling irritable, unpredictable, isolated, frustrated, confrontational, irrational, incoherent, always tired, eating or drinking more);
  • Hold, or have held, a mobile phone to your face and ear for over 20 minutes for long periods of time;
  • Grow up in a household with parents who are heavy smokers;
  • Spend, or spent time in, smoky atmospheres even though you have never smoked yourself.

Make a date with your mouth each week. Consider this to be an essential part of your personal insurance policy for the years ahead. 

May  you, and your loved ones, live long, happy, healthy, productive, cancer-free lives.

And may Mike get to spend more time with Henry.

family-playing-football-beach-summer-day-38192616

 

 

 

 

 

 

General Musings

Just who do we think we are?

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I once worked for a publicly listed company  which had a very charismatic and passionate CEO who founded the company.  As a result, he set the moral compass and values of the organisation.  And while this resulted in a period of success and market change, the far-reaching impact was many lived in fear and forgot about truth and honesty.  So when big decisions came to invest in a more risky and global enterprise, it was the CEO and the ever voracious appetite of shareholders which resulted in what became a catastrophic over reaching  of capacity and capability.  At the time when we most needed an effective Chairman and Board to ask calm and collected questions and balance the power of the CEO, they were effectively sidelined by his single-minded vision for the future.

Today as a nation, we teeter on the edge of a similar story.

blog-magna-cartaThe structure of governance in our country has developed since the  Magna Carta, to create balance and fair challenge and to protect our democracy and rule of law.  Our  (un-codified) constitution defines how we govern our democracy and sets out the way in which our country will be run.  It ensures power is balanced and limited, to safeguard and protect the rights and freedoms of the citizens of our country and it does this by giving three main bodies constitutional power:

1.  The Executive (Government)

2. Legislature (Parliament)

3. Judiciary (judges)

By separating these three bodies they provide a check on each other, ensuring power is not concentrated on any one area.

I share this because I’m struggling to understand the vehemence of some of the news headlines and media reports, and by the dangerous rhetoric espoused by some un-elected spokespeople, as a result of the decision taken by the Judiciary last Thursday about who has the power to trigger Article 50 and the exit of the UK from the European Union.

This decision was founded in our constitution – the Government cannot take away the rights of all of its people (those who voted in, or out, or who did not, or could not, vote at all) by issuing an Executive decree.  blog-conservative-leader-theresa-may-addresses-party-conference-612810942-57f4f2e5c5b99So when Teresa May told the Conservative party at their annual jamboree in September that she would trigger article 50 by March 2017 – the Judiciary have decided she was breaching the limits of her power.

As UK citizens, we elect our members of Parliament to act and make decisions on our behalf.  Their role is to represent us and their political party by participating in debates and voting on legislation and other matters. We cede our control of decisions to our elected MPs.  Our rights (including are we in or out of the European Union) can only be taken away by an Act of Parliament, voted for by our MPs  and this is why the Judiciary have ruled that the Government alone cannot invoke Article 50 to trigger our exit from the European Union.

In the context of Brexit, much as though it was lovely to have our say, it was never legally binding as constitutionally we don’t recognise the opinions of individuals.  the-great-thing-about-democracy-1-quoteOur current democratic principles mean we have given the right to make these decisions to our elected Members of Parliament.

But this is not how some sections of the media are reporting this.  There have been personal attacks on individual judges, a bullying Governmental line, an ineffectual and embarrassing Lord Chancellor, Liz Truss, who took over 24 hours to defend the constitution and Judiciary (and whose defence was less than weak) and a general lack of understanding of democratic governance in our country.

So what kind of democracy do we want?

Let’s look at our choices.  We can have a smaller, national democracy focused solely on the rights of all UK citizens.  We can have a larger, more international democracy focused on the rights of a broader population such as Europe.  We can have no democracy at all and instead go for a, hopefully benign, dictatorship.  There is no such thing as a perfect democracy.  No one size fits all.  Look around the world – each nation-state has its pluses and minuses in how it chooses to govern  and enact their rules of law.  However, the point is that it is impossible to give voice to each individual, and on every decision; for society to function, we need to place the responsibility to make and implement decisions for the many in the few.  That’s a big responsibility, both for those passing it on, and those receiving it.  And that’s why the independence of the judiciary is so important.

And to get an idea of what those choices may be, we need look no further than our American allies and their codified constitution, where possibly they are facing an even bigger catastrophe about their national identity and how they see themselves.  Voters there have a choice between the rock and the hard place. quote-the-difference-between-a-democracy-and-a-dictatorship-is-that-in-a-democracy-you-vote-first-and-charles-bukowski-26894 But plainly there is one vote that will uphold their existing constitution and rule of law, even if she is feathering her own nest at the same time, and one who has clearly, unequivocally stated he will operate largely as a dictator and ignore any checks and balances on his power and decision making process.  I’m not even sure I would describe Trump as benign.

So let’s not sleepwalk into complacency.  We have a Parliamentary democracy, which operates with the governance of the Executive and Judiciary to balance out its power for very good reason.

blog-justice-and-democracyNo matter how you voted in the European referendum, there are broader questions to be considered.  Who do you believe has the right to make decisions on your behalf?  What kind of check and balance do you want on how much they can decide on?  What should you be able to do and say should they make decisions you don’t agree with?

For while it’s true that no one thing should ever be always remaining just how it is, surely in terms of how we democratically make laws and decisions, to undermine a system that has developed over hundred’s of years, and is modelled throughout the world, can only lead to a less democratic and fair society.

So let’s pause. Let’s consider the impact on all of us, of this continuous drip feed of negativity and challenge. How much more fearful do we become? How much do we step away from our heritage and ways of governance into a pseudo democracy where we cede decision-making control into the hands of newspaper barons and those who shout the loudest.

Be careful of what we wish for. Before it’s too late.

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