Category Archives: Changes created by the cancer adventure

dealing with and managing through cancer, its diagnosis and recovery

Progress two weeks on

This time two weeks ago I was lying on an operating theatre having half my tongue removed and replaced with a graft from my wrist, which in turn was replaced with a graft from my tummy.  I also had the lymph glands in my neck removed and replaced with the radial artery from my left arm.  In addition they removed some other lymph nodes,  a couple of saliva glands and a couple of small arteries.  I was in theatre for 12 hours because they needed to connect arteries and veins and I am only little, with little veins.  So this microscopic surgery requires time, patience and precision.

operating theatre

With the amount of surgery required (over 10 hours on the operating table) it takes 2 consultant surgeons and a large surgical team, as well as the theatre staff and the incredible nurses in intensive care to get me through the first 24 hours.

The fact that I walked out of the Royal Country hospital at lunchtime the following Friday is testament to the skill, care and dedication of a large and wide NHS team.

And the knowledge that I am cancer free, two weeks later, is very much down to the skills and knowledge of my consultant surgeon.  He did as he told me he would; he removed the cancer.

So how am I doing?

I have pain in my left ear; apparently this is due to some jaw trauma and with medication it’s completely manageable.  This should go over time.

The stitches are out from my ear to my neck and across my tummy.  I cannot put Bio oil on yet, as the wounds need to heal for another couple of weeks.  Instead, I slather on Vaseline in a nightly ritual that is both comforting and distressing. Comforting, because I am being proactive; and distressing, because I am vain.

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My left shoulder is stiff and sore but I understand this is because they have had to cut so many nerve endings around my neck. The physio exercises they have given me will help this.

The left arm still has 28 stitches in it.  They are supposed to be disolvable but they are stubbornly clinging on.  I can now also access the skin graft, which is an oval at the top of my wrist (just below my thumb) measuring approx 3in by 2in. This means another 32 stitches and some staple damage after they had stapled the blue sponge protecting the skin graft.  This graft has taken well and it also gets a coating of Vaseline but only every second night as we need to keep the grafted skin dry and supple.

My tongue has moved from being an alien being in my mouth to becoming an object of curiousity.  One day it is smooth like a baby’s bottom; the next, it feels as if its splitting in two.  It is still ginormous and is a muscle I can’t control.  The sounds that it creates are either jaw droppingly funny, howlingly embarassing or almost legible.  I have found a small pocket to the right hand side of my mouth that is not swollen.  Careful placement of a single solitary chip is like winning the  lottery.

Foods to avoid are those which are soft and lumpy, such as  porridge and scrambled egg.  Jelly is hilarious – I cannot control where it goes and it dribbles down my chin like I am a 3 month old again.  Rice is also to be avoided.  Three grains caused me so many issues, made worse that I tried this social experiment when we were out to lunch.

Women queuing for theatre bathroom

I had to go to the ladies loo and chase the grains around my mouth with my finger.  This turned into some Hammer horror nightmare, as obviously every woman in the restaurant decided at the same time that they needed to go to the bathroom!  Last night, a small victory; trout and cauliflower cheese,  but it’s a slow laborious process and eventually I get bored with the cold congealed mess on my plate.

So I drink a lot of home-made soup and smoothies, occasionally shooting baleful glances at the food police – AKA Craig – who insists items are consumed.  I hate the shakes that the hospital have so helpfully provided, so most of the time I smile and swallow as the threat of the shake is enough to get me to comply.

Frustratingly, I still get tired quite easily but I’ve been out and about, making it to a Christmas celebration in the pub in Kingsclere, some lunch and a spot of light shopping in Winchester, some supermarket shopping in Basingstoke, a couple of trips back to the hospital in Guildford and Roscoe’s Christmas Carol service at school.

I’ve had lots of visitors to the house and from the get go I have exercised my tongue muscle, even if I sound slurry and drunk.  The whiteboard has remained un-used since we left the hospital ward.

Ahead we need to sort out my speech; this is largely dependent on the tongue swelling.  We also need to look out for wound care, particularly on the skin  graft around the arm and the neck wound.

It’s all very doable.  Frankly I am amazed at how easy and relatively pain-free it’s all been.

 

Who does what…

When we are in the planning stages of any business change we often do a RACI – who is responsible, accountable, consulted or informed throughout the change.raci-matrix-responsible-accountable

Needless to say, in the corporate land I inhabit, this is often not observed and it’s often one of the most frustrating things about what I do.

Everyone, of course, is a communications expert and everyone has experienced some kind of change in their lives.  So naturally, people at work think nothing of critiquing or meddling or redoing my work to suit their personal tastes.  I would say 50% of my working life is sorting out the mess that senior executives create when they ‘get involved’.

guilty-dogAnd I am not without blame here either.  I often do a bit of learning & development or recruitment or commercial negotiation with agencies etc. on the side, as these are skills I have from my past roles which I don’t want to lose. Sometimes I forget about the impact this has on my colleagues who already perform these roles in the working environment.

So imagine what would happen if you applied this degree of ‘scope creep’ in a hospital environment?  If the anaesthetist wakes up and says, “I’ve seen the consultant surgeon do this operation 100 times, I’d like a go”.

Thankfully it would never happen!

The RACI in the hospital environment is very well observed.  The consultant surgeon is accountable for removing the cancer, his surgical team are responsible for helping him make this happen, maintaining my health and well-being at all times.  The dietitians are accountable for ensuring I have enough nutrition to heal in the days after the operation, the nurses are responsible for ensuring the feeding tube is in place.  The speech therapists are accountable for providing me with speech and mouth exercises and responsible for making sure I can swallow safely before I’m given water to drink or food to play with! The nursing team are accountable for my health after the operation and responsible for my care in the following days.  Even the receptionist is accountable for making sure I have follow-up sessions scheduled.  You get the general idea.

What this does is create a very efficient system.  Everyone knows their role and everyone is an expert specialist in performing in that role.

But, for me, the most impressive aspect of all is that the leader – the consultant surgeon – seeks others’ ideas and opinions about my treatment, and he listens to what these opinions are before making a decision. He does not  believe he has all the answers.  He seeks the collective knowledge of his team to assess and debate alternatives.

And this collective wisdom means that today I write in recovery – with the cancer all removed and no radiotherapy required.  The decision to remove my lymph glands and nodes means that those 2 sneaky cancer cells, hidden from MRI and other tests, went when they took the lymph glands away.

In change terms – the RACI and associated governance works.  We have ’embedded the change’.

 

 

Preparations

I do not sleep much in the week ahead of my operation.  I’m not worried but there is so much to do.  It’s a bit like going on holiday when you run around so much in the days beforehand that you are too exhausted for the first few days of your holiday to really enjoy it!

Image of very tired businesswoman or student with her face on keyboard of laptop

So aside from the fact that it’s 4 weeks to Christmas and that I’ve bought and wrapped all presents and decorated the house, I have also;

  • Had my hair cut and coloured* (can’t have greys in the weeks ahead)
  • Had my eyebrows and eyelashes tinted (must look good on the operating table)
  • Bought a white board and marker pen ( no one is going to stop me from communicating)
  • IMG_1157Purchased two button through night-shirts (‘arse oot hospital goons’ are to be removed as quickly as possible)
  • Bought a small, powerful lavender aromatherapy oil and reeds (I cannot recommend this highly enough as your sense of smell heightens after this op)
  • Set up a whatsapp recovery group (I need my tribe to keep me looking forwards and outwards)
  • Seen the homeopathic Doctor and ordered all my homeopathic drugs in liquid form (any which way baby)
  • Been to the doctor and changed my HRT pills to a HRT patch (So Craig can still sleep easy each night)
  • Been to see Gina my holistic guru and practised Extra sensory tapping, meditation and chanting (Hey! It works for me)
  • Packed five bags – two for me, a small immediate bag for the first couple of nights and a larger one to be brought into hospital later.  And three for Roscoe who is off staying in various mates houses while I’m in hospital. (Won the packing queen award for organisation)
  • Written several lists for Craig (all of which he ignores)

So, given this activity, I’m as ready as I’ll ever be to go and sort out this cancer.

 

*big thanks to Kurt & Danielle Reynolds who changed packed schedules to fit me in to their hair salon ahead of the operation.

 

Scheduling cancer

Consultant surgeons are like CEOs of multi national companies; they have their own ideas and foibles and inevitably they are followed slavishly by hordes of invariably bright, handsome and pretty young things.

group of medical doctors and nurses

So it is quite intimidating to go into a consultant surgeon’s office and watch him struggle to say, “you’ve got cancer”.  But we had 4 days to get our heads around it, so when it came out of his mouth the Scottish black humour descended and our jokey response was obviously not what he expected.  He talked about millimetres and clearance and going for complete cure and slicing and dicing.  And this bit and that.  And 10 hour major surgeries.  And blah.  But it was obvious that once the mechanics were out, the conversation was going to be uncomfortable.  In this moment we were 3 humans trying to connect around the C word.  I wanted dates and schedules, Craig wanted reassurance, and the consultant surgeon wanted the conversation to be over!  It was harder for him than for us  – he knows what’s coming – and I wanted to give him a wee cuddle as we were leaving; it’s obviously a horrible part of the job and not one that gets any easier.

We left his office in a state of giddy excitement and, on reflection, shock.  We were off to make a plan.  I love a good plan! So off we went to the woods.  In the teeming rain (honest, I’m not making this up!).  And in this one long, wet walk we formed the basis of our approach.vyne-estate-map

Plans should start with some governance  – who is doing what and making what decisions – and principles.  Our number one principle is that, as far as humanly possible, nothing would change for Roscoe.  He’d still go to the same clubs and activities. We would still be on the same sidelines of the same football pitches. And that, barring a couple of days, all things would be as was.  We also agreed that he was never to come to the hospital, not to visit or attend any hospital appointments. Another principle was to use the word ‘cancer’ when telling him, and to use the consultant surgeon as our communications model for this conversation.  Simple, factual and geared to Roscoe as the recipient.  We also agreed that we were outsourcing the cancer to the consultant surgeon.  We didn’t want statistics and details, we wanted hope and outcome thinking.

At no point in this discussion, or any other we’ve had, did I ever doubt Craig’s love for me. From the get-go we were in partnership on this; maintaining this lockstep gives me rhythm, and his sense of humour brings me real tears of laughter and joy. This bedrock of togetherness gives us both strength, and all big decisions we make together.

We made a ‘stakeholder list’.  Who did we need to tell because they were part of the support/back up  team, who did we need to tell because they were precious to us and who needed to know from a work perspective.  And in what sequence did we need to share the news.  Sometimes these conversations were really hard.  I learned as I went along to say “I know you love and care for me, please don’t express this right now as I need to keep it together”.  To a man and woman they all offered help and support – whatever we needed and I was left in awe by the generosity of spirit that adversity brings.  Often these conversations were snatched moments in car-parks and shopping malls and for this I can only apologise. The best way to describe this period is the dark half-life – the one where you are there, but you’re not.IMG_6622

But there were also other moments and conversations which helped shaped the life ahead.  Speaking to Andrea – the young Mum from the next door village – who two years previously had been through the same procedure was incredibly helpful.  Those three hours of crazy questions, from what clothing to wear based on how much access to tubes and wires they needed, right the way through to how to wash hair, loss of sensation in hands and neck, how to deal with scars and healing, reshaped my approach.  Andrea and I are very different but our overall attitude is similar; let’s sort it, learn from it and move on. Cancer does not define us and who we are.

From the Andrea conversation I called back the consultant surgeon.  Could I have more time? I had more questions.  He saw me that evening. Craig, running from work early so he could be there for Roscoe’s club, made sure we lived our first principle!   My questions were wide-ranging and holistic in their nature.   I explained that my approach was not to question him on the cancer itself – this was his job to sort – but that I wanted to look at the whole system, both in terms of change itself and of the support on offer.   What could I do in the future to prevent a re-occurrence?  What could I do to make his job as easy as possible (‘weight gain’ was not what I wanted to hear)? What did I need to do differently? To be told that I didn’t present as a normal case (non-smoker, light drinker, no HPE virus) wasn’t really what he wanted to say, or what I wanted to hear. Somehow it’s easier if there is something, or some behaviour, to blame.   I told him I am focused on the superficial – the scars, the location and treatment of scars – and wanted to know about camouflage make-up, counselling for Craig and general support (none available).  I informed him he was part of the outsource plan – to get rid of the cancer.  By this point he was so far back in his chair he was practically horizontal and the power distance between us had changed.  He didn’t want to discuss alkaline or acidic diets (no proof), the location of skin grafts and scars were non negotiable (well I’d like the option to wear a bikini again), speech therapy and dietary advice would be provided by specialists in the hospital (I could get access to these as often as needed but don’t bother him with these questions) and complementary and supplementary health treatments were not part of his repertoire.

Mid way through the conversation he threw a curve-ball “what was my degree in?” My response “I’ve a Masters in intercultural communications”  seemed to really confuse him.  I followed up with “if you were Spanish or Italian or French or something exotic , you would understand but as you’re English please don’t try. What you need to know is that is my degree is not science based”  In this moment, he was the Martian and I truly spoke from being from Venus!  There was no right nor wrong, just two different languages trying to find some similarity and a base to move forward. He regained some comfort level when I asked about how the tongue functions, so I could work on memory recall and visualisation. But then he heard my non specific use of such knowledge and started to emanate all the classic signs it was time to go.exit stage left

What did I really learn?

That he is the regional cancer specialist for the head, neck and throat and that is his job.  This is what he’s brilliant at.  So I am in the hands of a specialist. A well-trained, knowledgeable and skilled expert.

I am in the best hands to get rid of my cancer.

 

Meeting Silvana: through the looking glass

As part of my need to feel in control I’ve wholeheartedly embraced all alternative therapies. Well, I’m not wearing musk yet, my hair is not in braids and it’s too cold for jesus sandals.  But I’m doing virtually everything else.Hippy_by_Jinxxxi

Part of this philosophy is to use the cancer to treat the cancer.  So when my homoeopath suggested I ask for a slide of my biopsy, I took great pleasure in crafting a finely tuned missive to the PA of the consultant surgeon.  I wish I’d seen his face when he read it!

At our meeting with the team involved in my surgery, the consultant surgeon pushed a piece of paper with some scant instructions into Craig’s hand.  ‘Pathology 2, Dr Di Palma’.  It was made clear this was an unusual request.  Undaunted, we set off on our new hospital adventure, to find the ‘path 2’ building.  At one particularly confusing turn – neither Craig or I are blessed with a great sense of direction – we met a delightful old dear who had worked at the hospital for many years.  She was very keen to know where pathology lab 2 was located herself and, after asking directions, she took us into the bowels of the building, popping us out – like Alice and the white rabbit – next to the main incinerator. She then scuttled off, delighted with her new morsel of knowledge.Alice handles the white rabbit

‘Path 2’ is a modern building by Royal County Hospital standards, and after pressing the array of dizzyingly labelled buttons (none of which mentioned pathology directly) we were let in by a workman welding a paintbrush.  We came to a floor that had a tiny little Christmas tree and a bell. A young girl appeared, proudly wearing a knitted Christmas jumper, and was startled to see “real” people  in the building! She made a couple of calls and led us down into the basement, along a narrow newly painted corridor and into the offices of Doctor Silvana Di Palma.

This was the moment where I absolutely, knew I was going to be fine. As she ushered us to sit down I looked at this powerhouse of a woman and was totally impressed. From her perfectly coiffed hair, to her beautifully made up face, to her Dolce&Gabbana heels and chic fitted outfit, this woman oozed class and passion. And she was interested in me and what we were going to use the slide for.  She unwrapped it carefully from its paper and presented it to me solemnly; “the cell is cut on the diagonal”, she intoned, sounding like a cross between Sophia Loren and Gina Belluchi. “The pink pieces are healthy, the blue rings are carcinoma”.  She paused.  I could find nothing to say.  I was looking at pink blobs and blue blobs, and desperately wanting to impress her.  My mind itself had turned into a blob!

She seemed to sense that I did not share her passion, and my diplomatic husband valiantly came to my rescue by asking about the black and white photos on the wall.  They are her childhood village in a small part of Italy near the Umbrian mountains.  Smart, talented, beautiful and grounded; I wanted to ask her round for dinner!

So, as a scientist she wanted to know specifically how we were planning on using this slide.  I waffled on, talking nonsense, seeing my new best friend evaporate before my eyes.  Eventually I blurted, “I don’t know how it works, I don’t care how it works, what is important to me is that I’m doing absolutely everything to eradicate this and make the cancer go away”.  She patted my hand and gave me her email address.  “Stay in touch”, she said.  “I understand and support you in what you are doing and I’ll look out for your cancer cells and deal with your case personally”.

I am going to invite Silvana for dinner, along with my smart, bright girlfriends.  We will have much to talk about; I’ll be happy to discuss colours, just not pink and blue blobs!

 

 

 

 

Off to Australia

I am practising some visualisation.  Its a technique we use often in NLP  and it allows us to fully use all of our senses so we can navigate tricky situations.  You can use it for lots of different scenarios  but its jolly useful for me to use these techniques to think about the next few days.

I’m facing a 10 hour complex surgery.  Lots of mess, skin grafts, blood and gore. Followed by a period of forced sedation.  Thankfully,  I won’t be there.  I’ve boarded  a plane bound for Australia.

Qantas_Airlines-1024x700

I’m sitting on the plane in my first class seat – is there any other way to travel?  There seem to be no other passengers in this part of the plane and it looks like I am more in a large open space with no other chairs like mine around.  How lucky is this?!  A whole cabin to myself!  And lots of staff to run around and look after me.  Excellent news.  My  firm but comfy seat allows me to stretch my legs right out so the backs of my thighs and lower back are fully supported.  I have my glass of champagne in my right hand, the stem is slim and narrow and can easily be held by my thumb, index and middle fingers.  It’s heavy as it’s full, the bubbles are racing to the top of the glass and the pale golden colour reminds me of the rise of Scottish sunshine in the early morning light.  When I raise it to my lips, the first sensation is cool and sweet.  The smell is of hay bales in the summer sun.  I swirl the liquid around my mouth and taste sharp citrus lemon mixed with a dry, sweet burst of apple. Hmm.  I think I may need to ask for another glass – this is going down the back of my throat very easily!

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I feel the alcohol racing around my body.  It makes my feet tingle.  I’d like to dance but the music is too low for me to properly hear it.  There is so much space in this cabin and I feel free and uninhibited  – dancing brings so much joy.  I really want to hear the beat properly.  I’m straining to listen but the captain has turned on the fasten seatbelt signs and the engines are starting to roar.  I check my seatbelt.  It is tight across my lap.  I put my glass down and the stewardess soundlessly appears and removes it. I smile at her and she smiles a dazzling pearly-white smile in return. She puts a reassuring hand on my arm, her touch is gentle and caring on my bare skin.  The hairs on my arm stand up. I’m looking at my arm but not quite seeing it clearly.  It looks very blurry. How much champagne have I consumed?  Her words sound muffled, like she is speaking at a great distance.  The plane starts to shudder and roar as it speeds down the runway.  My ears want to pop and I start to yawn to relieve the pressure.  Count backwards from 10 she says.  I start but the numbers don’t seem to want to come out, I get to 7 but sleep washes over me.  The plane is in the sky.  I don’t feel, hear. see, smell or touch anything.  I am weightless. Absent. Free.

Laura…Laura….LAURA!!!  Who is this persistent shrew trying to wake me up from my lovely sleep?  I am angry, annoyed, beyond irritated.  What’s her problem? LET ME SLEEP! I want to yell but it’s not coming out. I open one eye with a big scowl on my face.  Damn, I’ve obviously been on the razz. My whole body is achy and I can’t move.  Oh, and I’m not wearing my clothes…no knickers either.  Must have been a great night. Shame I can’t remember anything.

Ugh!  I feel like shit.   I can tell by looking at her that I’m not looking too hot either. I can’t have mascara down my face as my eyelash tint is still new.  Do I want to see if I can look in the mirror?  Hmm, still feeling too tired and don’t want to raise my head.  Actually I can’t raise my head, I’m connected to lots of wires.  I’m in the Matrix. I am Neo or his hot girlfriend. Actually, I want to be Neo.  The chosen one. The one who kicks ass, dodges bullets and bends metal to his will. I am NEO! Yeehah!!

Neo 2Neo Matrix

It’s Monday she tells me.  I want to ask if we have safely landed in Australia.  But sleep beckons. Later…

 

T’was the night before

The boys are off to football training and I have the house to myself but only for an hour.  In 24 hours I’ll be in the hospital – hopefully not yet wearing one of their delightful gowns, waiting for my surgery.

I’m busy doing stuff but at the same time my mind is swirling.  I’m focusing on tidying, sorting, cleaning, packing while at the same time observing my changing moods.  Yes, I am anxious and nervous but do I really need to blow a gasket because Craig has given Roscoe the socks I had carefully pre-packed in his Chelsea foundation football kit?IMG_6682

This mood shift is interesting.  I’m properly mad.  I would shout if there was anyone to listen.  What is happening?  Craig and I have had a lovely day together so why do I want to throttle him?  Ahh! It’s my control freakery out to play.  I’ve  packed for as many of Roscoe’s activities as I can think of next week.  It’s part of wanting to still feel in control despite knowing that when I walk through those hospital doors tomorrow I cede all control to the trained doctors and nurses.

Now I understand.  Let my  breathing rise and fall.  If Roscoe ends up at school or his football practice  with the wrong kit/no kit it’s not the end of the world! Delegate Laura, delegate!IMG_6683

And then my mood shifts.  I’m carrying drinking glasses downstairs and listening to them chink against each other, remembering the taste of the Berocca in my mouth as I try to stave off the approaching cold.  Roscoe is good at sharing!  I swallow.  The lumpy throat is still there.  Perhaps I need to eat an orange? Perhaps I need to just breathe and accept that a cold is the least of my concerns right now. Get a grip girl!

I’m in the study, I realise I’m never going to be able to sort it out before I go. But I’m going to give it another try.

I need to start to cook soon. They will be home in 30 mins.  I’ve missed the Archers. Dang!

And I should be making phone calls and talking to all of you who have offered me so much support, love and laughter these past few weeks since I “came out” about my cancer.

So forgive me the silence.  I need this time to settle. To get ready. to keep busy.  I’m thinking of each and every one of you and will reach out later.  But for now the clock is ticking, the minutes roll past and I need to keep working at getting ready…

Lists

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.