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Hearing you’ve got cancer is scary.  I was like a headless chicken for quite some days.  headless-chickenI had no idea what to say or to think and looking back these initial few days were a blur of confusing medical terms, dark thoughts and odd bouts of euphoria (this will sound odd but those of us who experience this feel ecstatic; we are now going to do something about it – the choice is back in our hands – well the hands of our consultants, but you get what I mean!).

If you’re ever find yourself in this unfortunate situation, here are my top 10 tips to consider once you’ve been diagnosed and you’re still getting used to it.

  1. STAY AWAY FROM THE INTERNET!  I’ve put this in shouty capital letters.  It will do you no good to know the gruesome detail and you will scare yourself silly. Scaring you is part of the job of your cancer consultant – not some random from the ether.
  2. Stay away from the cancer forums of people who have had/have/or who passed away from cancers like yours.  Yup – relatives still post on how dear Doris or Jack soldiered on through their diagnosis and treatment.  For every great story about someone coming through the other side, there is one about misery, pain and  suffering. And guess what one we remember and regurgitate?!!
  3. Let your friends/family know.  They are your support network and will give you love, care and hope.
  4. Be open to love and care from whoever offers it.  Accept it graciously – one day you will be able to return the favour, right now it’s your turn.
  5. Don’t be a victim.  Yes, it’s cruddy news.  But now you’ve got cancer.  You can’t change it, so don’t blame yourself, your partner, your lifestyle, your diet etc.  That was then.  This is now.  Own your cancer and work out how you will manage it. Don’t let your cancer manage you.
  6. Be clear about who is doing what.  Otherwise known as Governance. Can you treat your cancer?  Can you remove it?   Know what you can and can’t do.  Outsource your cancer treatment to the specialists and focus on what you can control.  Some suggestions include your health, your diet and your mindset.
  7. Be clear about what you need from people and don’t be afraid to ask.  I’m blessed with great friends who all invariably ask how they can help and contribute.  I’m now used to saying “Right now, I don’t know what I will need, but I promise I will call you”.
  8. Don’t feel obliged to answer questions. Or to say “I don’t want to talk about this right now”.  Be relaxed about your honesty. Most people will understand, and those who don’t need to be jettisoned tout suite from your life.  You’ve enough going on without carrying those who are not true friends.
  9. Maintain your interest in the world outside.  Consider other people, their lives, what’s going on in the news. By staying focused on the outside world, you are giving your subconscious time to process and focus on keeping you positive.  There is always someone who is worse off than you.  Be grateful for what you’ve got and think about those who are dealing with problems bigger than your cancer; self-absorption will make you dull and maudlin.
  10. You are not a statistic.  You are you. You are a unique human being with the ability to make your own decisions and choices.  First,  work out how you feel.  Where in your body is this feeling?  Is it in your heart, your body, your head?  Is it somewhere else?  Can you describe the feeling? If it’s all in your head then you are going to love all of the numbers and graphs and data. Get stuck right in.  But know right at the beginning that statistics, at best, are an average.  They are not you, do not define you and may not even apply to you.

 

Oh and a ‘Brucey bonus’…..If you are in the UK, for the next 5 years you get free prescriptions on the NHS. Register straight away at your Doctor’s surgery.  This will save you a small fortune!

There will be more hints and tips as I go through this.  If you have any insights, or thoughts or experiences, please share!

In the beginning

It started with a mouth ulcer.  Under my tongue, on the left hand side.  It must have been there for a while but I first noticed it in November 2013. We were busy at work – DB pension closure, some reorganisation, some further changes to employee benefits – the usual “change” stuff and frankly Christmas was coming up. So I ignored it.

Local jungle drums beat over that festive season and news filtered down that a young Mum had been diagnosed with mouth cancer and, incredibly, lung cancer  – both had been caught early.  When I saw her a few weeks later she was well wrapped up and speaking with a slight slur.  She remained cheerful throughout our short conversation and encouraged me to get a dental check up.  I didn’t mention my mouth ulcer.

A few weeks later, I remembered this conversation and the Doc referred me to a maxcillofacial specialist.  I had my first biopsy that March and it hurt.  Not so much the physical side but not being able to talk properly really caused me grief.  The stitches burst too and my tongue became a mass of muscle that developed a mind of its own. The good news was it was benign and although I had a white patch mass on the side of my mouth, I was assured that with regular reviews, all would be fine.

I have a busy life.  Our little family juggles two full-time demanding careers, the running of a home and the care of our much loved, sports mad and indulged son, Roscoe. juggling womanWe have no family close by and rely on good friends to help when we get stuck.

I work for an oil and gas company and get involved with big change programmes. At the time of the first biopsy I was knee deep in a voluntary redundancy programme which saw a third of the head office staff depart. I was busy, busy, busy!   I  look after the management of change and communications so people still want to come to work and do their best – even in times of uncertainty.

Change curveSo I know all about the change curve and the stages people go through and  confidently use lots of different communications and change models and approaches no matter what is thrown at me.

 

 

I’m also an ostrich. I can easily ignore lots of things. Including the omnipresent mouth ulcer (which returned bigger and uglier than before) and the regular reviews with the consultant specialist.

He wrote to me in March 2015, saying that as he hadn’t heard from me, he presumed all was well and was going to take me off the books.  Naturally, this encouraged me to do something about it. I called the healthcare insurance, got a reference to see him and promptly forgot again.

But the ulcer had other ideas and it started to get angry.  My mouth started to twist to accomodate that I couldn’t chew on the left hand side.  Somedays I didn’t eat because it hurt too much.  The dentist sawed off a bit of my bottom tooth to give my mouth some room.  The ulcer remained.  The dental hygenist gave me  4 different types of toothpaste telling me to try each one for 2 weeks to see if it would respond positively to the various ingredients.   Nada.  The dentist prescribed 500mg (industrial strength) Betamethasone  – a steroid oral mouthwash which I used for a further 4 weeks.  It had no effect. I changed my diet.  The ruddy thing would not move.  Guess I was stage one in the change curve – denial.

Eventually, I asked the dentist to refer me and I schlepped back to the specialist.

He scheduled the biopsy quickly.   Monday 09.30.  First thing on the Friday , the phone rang, “can I please attend an appointment the following Tuesday.  Perhaps I would like to bring my husband with me”?    It was all fairly obvious.  It was a long four days.

Denial was now futile.

I have mouth cancer.

A blog for the reader…

 

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This site is for those curious  about change.  The concept of change.  The act of change.  Changing yourself. Changing times. Changing others.  My aim is to provoke or encourage you to think about how you live your life, how you view others,  or events, how to become more resilient and to help you be clear about your opinions and actions.  Sometimes I may be provocative or you’ll read statements or thoughts you don’t agree with.  Great! This diversity of thought and belief is what makes our world so interesting.   Sometimes, I’ll use some of my change tools and techniques (after all this is what I do for a living).  I’ll also use my recent time off work and adventure with mouth cancer as these experiences have taught me to think, act and speak differently.

This blog continues to be a “work in progress”.  Some posts flow more easily than others – this is life isn’t it?  Some days it’s easy and others mean that hiding underneath the duvet or behind a spreadsheet or PowerPoint presentation,  is more enticing.  So you may find posts which don’t appeal but if you keep popping back, you may find others which resonate with you.  I write about wide and varied subjects and thoughts, and from the heart.  I aim to always be authentic and open and at the same time, I know there is often much more to learn.  So if you feel you can contribute,  expand or change my thinking, please leave a comment.  And if you just appreciate what I’m trying to say press’ like’.  It’s always great to receive feedback!

Thank you for reading.

Laura