Category Archives: Changes created by the cancer adventure

dealing with and managing through cancer, its diagnosis and recovery

Resilience

start quote on resilienceIt’s two weeks before my operation.  The weight and enormity of my cancer diagnosis is behind me.  I’m focused on the practical.  All I have to do, prepare for, organise lies ahead.  There are lists in every notebook, on every large magnetic surface. I am a whirlwind of efficiency, able to project risks, variabilities, possibilities and solutions.  More loquacious than I’ve been for a long time, I ask for and receive help, love, support, kindness.  In amongst this maelstrom, I open an email.  Would I like to participate in  IC Fight Night?  An industry event where four executives postulate on various topics and be red or green carded by the audience.  Immediate feedback.  Immediate discussion.  Immediate interaction and debate.  Four leading industry executives. One winner.  It’s in April next year.  Months away.  I  think about it for less than  a minute before typing “I’d be delighted” and pressing send.

At the same time, my work colleagues  are having to dig deep.  Bigger change than envisaged before is upon them.  The largest corporate takeover in the UK for the  past 15 years is underway.  It’s bound by international regulations and resolution is at least 10 months away. Uncertainty abounds. So much ambiguity, so many choices.  Stay.  Go. Wait. Help!Mandela quote on resilience

I watch, frustratingly near, yet from afar.  The ironic parallels are noted.  Living with my own ambiguity, health and future uncertain,  I am unable to do any more than empathise.  Once at the heart of all people changes, I am relegated to being on the sidelines, not on the pitch.  My choices are focused on family, health, friends.  For the first time in a long time, work comes a distant fourth.    It’s a liberation.  A chance for unfettered learning and curiousity.  I become my own change experiment.great quote on resilience

I slowly learn to live in the now. This happens gradually.  A focus on small stuff – an organised cupboard, a fridge full of green stuff, a wall of past photographic memories, notebooks full of future hopes and dreams.  Little inconsequential decisions, irrelevant by themselves but all together making a larger unseen picture, the ramifications of which are felt by the future choices they enable. I start to become stronger again.   My perspective shifts. I’m living the cure for cancer, not seeking it.   Nothing I do is more important than getting well.

Invariably, time heals; my body and, gradually, my mind.  And before I recognise the change, the snowdrops are peeking out from the grey green foliage, the yellow gold of the daffodils brighten up our country lane and the light of the night begins to lengthen and stretch.  April is here.

And with it comes my past promise. Fight Night.

The week running up to the event, I have all these excuses in my head.  All of the reasons I cannot participate.  Then Craig has to go to Baku in Azerbaijan for work.  It’s like an omen.  I cannot go, I have to look after my son.    But an understanding girlfriend removes the obstacle and once more I am clear to attend.  The only thing stopping me is me.  This is my test.  Can I function in a work environment again?  Can I offer any value?  Do I have anything worthwhile to share?resilience 4

Walking into the room is an inner strength test, almost comparable to being told about potential side effects the night before my operation. All around me are political election slogans and campaign posters.  This is the home of Bell Pottinger,  the advertising agency, whose ability to tap into the Zeitgeist of the day helped bring  Margaret Thatcher to power. In fact, our “fight” is located in the very room where she learned she was the next Prime Minister of the UK.  Thankfully all of this masculine posturing is negated by the warm greeting of a fellow panellist.  She and I joke about what we’re doing before the room starts to fill up.

Formats explained, everyone settled down, Fight Night begins.  A lively debate ensues on the value of having an organisation purpose, which segues into a heated conversation on the validity of resilience and if it’s something which can/should be trained.  I am in the thick of it.  Out of the window goes any reservation that my brain might not be working, that I’m better observing and participating with pithy one liners.  Oh no, I am passionate about purpose and resilience – two areas where I have personally invested these past nine months.  I’m up to my welly boots, and beyond, in debate. resilence diagram
In flow, I share that a purpose is required for attraction, recruitment and engagement – particularly of millennials; that resilience needs to be learned, not taught.  But this is greatly aided by providing a framework and tools for people to explore.  I talk about the value of peer group storytelling and experiences, about holding the conversation and listening.  I talk about brand purpose being so closely aligned to strategy deployment there is no chink between them.  I listen to the discussion on the differences and sameness of brand expression externally and the internal employer brand.  I offer a view on a more transient employee base – made up of knowledge workers, contractors, consultants affecting the employment proposition – challenging participants to stop just thinking about engaging employees. I get carried away talking about operating models and governance and the impact these have on change communications. And I listen to  others and learn much about channel strategy and the changing role of communicators and get involved in discussions on authenticity and leaders.   In summary, I have heaps of  fun.  And somehow, I “win” Fight Night.

But my real win is recognising I have no fear in sharing my truth.  And that, in this freedom, I connect with “flow”.  People may agree or disagree.  Red or Green card.  And I can bend, listen, laugh, be persuaded or stick to my thoughts and beliefs.

But always I am real.

Power Full.

Me.

maybe final quote on resilience blog

 

 

 

 

 

 

 

 

 

 

 

 

 

Out of the box thinking for non linear results

icl_logo_2607While working for International Computers Ltd (ICL), I was fortunate enough to be trained as a transformation coach and facilitator by the change guru Miki Walleczek.

At the time, ICL was undergoing extraordinary change, moving away from hardware manufacturing into systems and services and e-business technology. Non linear change ICLFuelled by beyond-clever boffins used to being at the cutting edge of what was possible,  the transformation potential was spine-tinglingly exciting. Tapping into our collective knowledge and skills and using our pioneer pride and sense of corporate history and culture, we embarked on a challenging business transformation campaign. non linnera thinking. use this onePart of this was learning to adopt out of the box thinking to achieve non linear results. Results which would result in us jumping the normal trajectory of performance.

20 years on, I am still building on my  Walleczek learnings and my subsequent years in Africa and back in UK corporate-land,  putting transformation theory into practice.  So when something is not going to plan, or we need to do something extraordinary,  I know to get creative, to look around for alternatives, to start exploring.

So when it comes to healing and pain relief, when the conventional drugs are not working and the threat of yet more medical intervention looms large, I am open to acupuncture and cranial-sacral therapy. And these do work but perhaps I am impatient or my expectation is too great.

And then,  through the magic of my alternative healing doctor, Gina, I find the restorative power of Russian science and technology, the SCENAR.  A handheld device which emits electrotherapy waves through my body sending messages to my nerves and brain to repair my damaged tissue, to heal, to ease pain.  I am delighted to feel the difference.

So how does it work?  Well it looks a bit like a TV control and sounds like a metal detector.  Its placed directly on my skin where it collects electromagnetic signals from my body.Scenar These are then modulated according to its software programme and played back to my tissues. Essentially, SCENAR uses my own internal body signals, scanning and re-transmitting these many times a second. It ‘evolves’ a new signal pattern for the disordered tissues, the machine literally entering into an information dialogue with my body.  During the treatment, new frequencies and energy patterns are established, which in turn become fresh input signals, to be further modified.  When it is combed over my skin the damaged tissue shows up as being sticky. So it rests on the sticky skin, beeping and communicating with me using frequencies beyond layman’s comprehension.

I think it works.  I don’t exactly know how but the power of belief is such that I will it to be so.  As a result, I must sound confident when, during my monthly check up with the Consultant surgeon, I explain this treatment and what I believe it’s doing for me.  We discuss my current issues with the ongoing pain in my jaw and left side of my face.  He seems slightly perplexed as to the extent of the neuropathogical pain but then proposes a radical departure for what I know of him. non linear change - victory He decides to match my belief with his own.  We agree I come off all meds and I rely solely on the SCENAR.  A victory!  Eastern belief over Western medicine.

Footnote:  Perhaps I need more SCENAR treatment but things have not quite gone to plan.  I ended up at the Doctor. Back on a revised course of the meds.  So it’s not transformation but change management which is needed.  Sometimes all it needs is time.

Non linear - final quote

Sing

Singing in the car
Easter Saturday.  We are in our new car heading for the coast.  We are on the trail of the briefcase left on the train which turns up at the end of the line in Littlehampton.  Despite the weather it’s a chance to take the car for an airing, a 2 hour drive combining motorway and winding A roads.

I’m the passenger, encased in cream leather, soothed by the gentle purr of the engine as we speed long.  Roscoe is oblivious – we could be in Timbuktu –  his eyes are glued to his portable DVD screen, headset on, he is lost in the world of X-men.Sing - X men
Super heroes with no limit to their powers to save the world from the bad guys.

Back in reality, I get to choose the music.  Because we both love to drive we have a rule, whoever is the passenger chooses the tunes.  There has to be some pleasure to sitting passively. sing great quote I’m playing one of my sing-a-long playlists, everything from Joni Mitchell, Nick Drake, Gram Parsons, Emmylou Harris, Carly Simon, James, Taylor, Fleetwood Mac through to John Legend, Bruno Mars, Phil Phillips, Coldplay and even Johnny Cash singing the Old Rugged Cross – my Nana used to sing this as a soloist in church and I still remember sitting in a hard wooden pew listening to her voice soar while silently ‘sooking’ a polo-mint.  Johnny is good but he’s not a patch on Margaret Godfrey!

As the child of a music teacher who can play any keyboard, I was often pressed into action to fill in time or fill a slot.  So I would duet with the angelic Ailsa at the Christmas eve service in Wick.  Full of inebriated, happy folks piling into the warmth of the kirk Sing - bridge street church Wickas the pubs had closed, we would stand importantly at the front of the pulpitSing - inside of the bridge street church Wick and trill Stille Nacht in two-part harmony.  When I got older, I would earn money by singing in the clubs as Mum played keyboard and sang harmony as together we would croon old favourites like Beautiful dreamer and Show me the way to go home!!  I would never have won the X-factor but I could hold a tune.

However much I love how music and words make me feel, I am now somewhat hampered in joy.  Turns out that our tongue is a key instrument in how we sing. No longer am I the songbird; now I’m the warbler. sing proverbAnd without the ability to hold the notes, my ability to let go in the music is diminishing.  It’s fine being the funny guy – Craig and Roscoe roll around laughing as I try to get the tune out- but inside it hurts.

So I am careful with my child who is currently tone-deaf.  He loves to sing but his voice is getting quieter.  He’s gone from loving music at school to attending music class and choir reluctantly.  The school have hired a music teacher still harbouring her own aspirations for West-End stardom and she brooks nothing other than perfection.  So she has told him he’s “no-good” and to stand at the back “singing quietly”.  He tells me he “can’t sing” and I respond that his voice will come when it breaks.  And I have no idea if I can teach him to sing in tune or if I can train my errant tongue to vibrate in a pleasing manner.

But I’m going to try.  Suggestions on how are most welcome!

sing! great end quote

 

A blanket of power

I’ve been lucky enough to have met, spent time with , observe and role model some extraordinary people.  It’s always a privilege to  absorb beyond what is said – to see and listen to the whole person, without judging or filtering (as much as anyone can).

So a week in Glencree, in the beautiful Irish Wicklow Mountains, to learn from Dale Hunter – one of the world’s foremost facilitators – in the company of some of my favourite Vodafone colleagues, was special indeed.  There were ten of us there and I guess in the beginning I was more interested in the facilitation certificate – the piece of paper to show I had been trained by Dale – than I was in the process.

But Glencree is an extraordinary place.  Blanket of power. GlencreeFounded in 1974 as a response to violent conflict in Irish society, Glencree was where all of the political parties from Ireland, North and South, and the main parties from Britain, participated in inclusive and multilateral dialogue workshops to bring about the Irish peace process.  This learning and talking, which took patience, time and perseverance, was then built on and shared with the likes of Archbishop Desmond Tutu and the South African peace and reconciliation team,  survivors of Rwandan genocide and many others from all over the world who are  involved in, or victims of, acts of religiously motivated or political violence.

So here I was, in a place seeped in history,  passion and transformation, learning from Dale and my colleagues.  And the combination of environment, time and people began to weave its own magic.Blanket power; use this Glencree image  We would wrap ourselves in the knitted patchwork blankets, created by survivors of these many atrocities and share our stories, tell our tales, practice our learning and be reminded of our amazing lives and opportunities.  And the love, fear, memories and hope bound into every stitch, enveloping me in every moment,  turned out to be more powerful and transformative than any facilitation certificate.  Although I did receive the certificate too!!

And this experience, and the subsequent years of being in Africa – often with no power, no WIFI, no electrical interference – taught me the value of storytelling and listening; holding the moment with no thought of interference.  It also opens up the possibility of healing through non-medical means.

So, every night, I am wrapping myself in my healing blanket.  Developed to help cosmonauts deal with pain and heal tissue, the Russians have been sharing this technology with the West for a number of years. However,  as it’s not scientifically proven, our medical professionals struggle to assimilate it into normal practice.  Personally, I’ve embraced it as a basic tool for my recovery and rehabilitation.

Known in medical jargon as the Therapeutic Multilayer Blanket TMB-01,  it is made up by a combination of several specific membranes to prevent electromagnetic emissions from moving outside my body and to stop any external energy which might interfere with my healing.  It allows me to self-regulate my energy so my body becomes more efficient and effective in healing and maintaining itself.  So, in effect, when in the blanket I am acting as my own healing incubator.

It’s a big grey/silver blanket which crinkles loudly when I move, Blanket power - Russian blanket use this onenot at all like the chaotically colourful, soft, patchwork yarns of Glencree! Wrapped inside, I look like a larvae who has enjoyed his fill of plant life.  My half head protruding from its layers, I lie quietly trying to empty my mind and not fall asleep.

My healing blanket also has another important purpose.  It blocks out the electromagnetic radiation that emits from my mobile phones, my WIFI, my FITBIT, my life in general.  What these do to our energy fields and our general health and wellbeing is as yet unproven but the research and evidence is mounting.  And it’s not a pretty picture.

Blanket power cell-phone-radiationThe research being conducted into the potential damage to the brain  by holding a mobile phone near the head is a great cause of concern to the execs of the mobile phone companies. And, increasingly, Doctors like Dr Erica Mallery-Blythe are publishing their concerns about the effects of electrical magnetic radiation on our children.  There are several recordings of her and other colleagues sharing their findings and research on YouTube.

As a result of my own research and healing, all electrical items and  mobile phones are now left downstairs at night.  I only wear my Fitbit when I know I’m going to do some exercise, Roscoe is only allowed his electronics for a set amount of times at the weekends and we actively try to remember to turn off our WIFI each night.

And we are noticing the difference; in our sleep patterns, in the depth and quality of our sleep and20150714_202140 we are re-learning to connect without the constant glancing at phones, electronics and gadgets.

 

 

I’ve been fortunate to spend much of my life in the Highlands of Scotland and the hinterlands of Africa, far away from any electromagnetic radiation.  But I can’t help but wonder if the hours and hours I spent holding a mobile phone to my ear for my work is a contributing factor to my having had mouth cancer.

So I wrap myself in my Russian blanket, making space for my husband and son, and we heal, and hide, together.

power blanket final image perhaps

 

 

 

 

 

Pain

They say that once pain is gone you forget about it.  Apparently this is why Mothers are prepared to have more children. Having ventured down this road only once, I cannot comment!!

Medical science will tell us that somepain - alternative childbirth image people are more predisposed to pain than others.  I’ve been told that I have a high pain threshold which is why the pain that I’m now dealing with on a daily basis is really frustrating.

I’ve asked others who have had mouth cancer if this is a pain they recognise.  Some cannot remember, or care to forget, others are lucky enough never to have experienced it.

I’ve had acute ear pain from the day I walked out of hospital.  As I was on pain killing drugs for the first couple of weeks, it was a dull ache.  Then I arbitrarily took myself off these drugs – to see how I was doing – and immediately regretted it!   It took another few days to go back to a dull ache.  Now, eight weeks on from the op, I’ve learned to stop playing with the pain relief doses.

The physical parts of recovery – the  weekly hydrotherapy and physiotherapy sessions on the left shoulder, the scar care, managing the constant dry mouth, the speech therapy, cranialosteopathy – are all fine.  They are all exhausting to various degrees but it’s progress. But the pain I have putting my contact lenses into my eye, when I brush my teeth, yawn, cry, drink anything cold or fizzy, put any food in my mouth for the first few minutes, move my jaw around, talk for any considerable time, is really tough to walk through.Pain - great quote

According to the consultant surgeon, I’m suffering from neurological  pain.  He’s prescribed more drugs.  Five weeks in, I’m still waiting for the magic to kick in.

And it’s not the physical pain I’m worried about.  It’s what it’s now doing to my mind.   I tell myself I’m getting better, I don’t focus on the niggling thoughts in the back of my mind; but I cannot deny they are there.  And I’m unsure if it’s my subconscious trying to wake me up or if it’s just a negative pattern loop that needs to be ignored.Pain - great graph1

And much as though I’ve tried to name pain something different, to tell myself it’s the sensation that is helping me get better, when it kicks in, it’s my entire focus.  Wiping all thought from my mind, all sensation from the rest of my body, all awareness is towards the extreme molten wax being poured into my ears, the fire around my left jaw, the tearing, ripping of my left eye.  Pain - nerve endingsThis pain obliterates all thought, sound, sense. In these moments I have to move, to stamp my feet, to hold my jaw,  to rub my forehead. And I can’t cry; that just makes it worse!! And then it goes, as fast as it arrived. And the sweet sensation of normal washes over me.

I anticipate pain now before it arrives.  And I wonder if because I think of it, it appears.  I worry when I’ve forgotten to take my pain relief or if I’ve not taken it with me.  I think about what I drink, when I eat and what I eat, where I place the food in my mouth. And all of this noise isn’t me.  How dull is all of this?  But, despite best efforts, it’s beginning to consume me.

I’ve gone back to work on a phased basis, to be normal again and to give me something else to think about. I’m really pleased that I’ve learned how to disguise my scars and manage my diction quirks.  I like the new ritual of spending ages to paint my face, do my hair, wear work clothes.  But acting normal, when I don’t feel normal, is also exhausting and I’m left unsure if the cost outweighs the benefits.

And I have no answers.  It is what it is until it isn’t.

Damn.

Pain - ending option 2

Mastication and swallow

We all speak, eat, taste and sing.  We all use our spit and swallow to survive.  We learn to do this as babies, before our conscious is fully awakened. So how many of us think about the organ that allows us to do this?baby_2647544b

Our tongue is an example of the miracle of the human body.

Learning to do without some of it provides me with a daily lesson of not to take anything for granted.  Currently I have no idea how I’m going to sound tomorrow.  Thankfully I think I’m through the breathless ‘Pinky and Perky” squeaking that seemed to come out of my mouth the first few weeks!  But the lisp, and the struggle to make ‘sss’ and ‘ttt’ sounds more clear, can be really frustrating.  Each day I wake up to find out how much I will be able to eat or swallow.  And my family will tell you that I have thankfully given up singing, the notes I was able to hit unswervingly just a few months ago are now a distant memory.

One of the many things I am learning since having mouth cancer is to be mindful of what goes in my mouth and how I eat it.

Just take a moment.  Think about your last meal.  How do you use your tongue to move  food around your mouth?  Which teeth do you use to chew, and why? What makes your food moist enough to swallow? How do you swallow? How do you know when to swallow? How does your body know to send food to your oesophagus, where else could it go?

Dyphagia simply explainedFrankly,  a few weeks ago I could not answer these questions myself. But one of the many things I am learning throughout this process is the importance of the mouth in the enjoyment of food.

So the week before my operation, I have my first experiment on this journey. I buy lots of different foods. I sit at our dining room table.  Everything is quiet apart from the ticking of the grandfather clock. I look at all the foodstuffs laid out in front of me. colourful fruit and veg I feel each one, taking note of the rich red of the tomatoes, the different greens of the apple, celery, cucumber, then there is the orange of the carrot, the yellow of the pepper. I look at the pots of yogurt and humus, I smell everything before putting it back down. I shut my eyes.  This is  a visualisation game.  On my own. No Kim Basinger or Christian Grey involved.  The purpose is to kick-start my recall.  How to eat different foods with different textures, smells and tastes when half my tongue is gone. And I practice.  Through touch and smell I can accurately guess what I have to eat before it goes in my mouth. But, when it gets in there, habit takes over and I chew and swallow quickly, anticipating the next mouthful.  I have to stop. To remind myself of the purpose of this exercise.

Turns out that I’m rubbish at it. It’s not greed exactly,   it’s just that it’s difficult to work out what my tongue is doing, how my teeth are involved, how I swallow.  I think it’s fair to say that being mindful about how I eat is not a natural state for me.

You try it.  It’s not easy.

coordination-of-mastication-swallowing-and-breathing-5-638    the 2nd stage of swallowing

From my hospital bed, I ask my tribe to do just this.  To describe how they masticate.  Neuroscience of masticationThe answers vary and some are hilarious. Many are similar to me.  In a resting state their tongue sits at the roof of the mouth.  Others find their tongue rests on the floor of the mouth. Some talk of pooling their food, rolling it around, others discuss the importance of saliva, one talks about the tongue working like a wave rolling the food onto the teeth to chew before pooling it back together and sending it back to the back of the throat for the swallow reflex to take over.

I now know that the tongue is a 3D organ, made up of 8 major muscles.  I have listened to the experts and read a lot on the web on how it works and all it does.  And I know today that some of these muscles have gone in my mouth and are replaced by skin that’s still learning to behave.   And skin is not, and never will be, muscle.  I am changed forever.

Imagine your life without being able to speak, taste, eat, swallow or sing. How differently would you feel? How confident would you be?How much enjoyment would you have from life itself?cartoon mouth and tongue

I urge you to check your tongue regularly and to make sure you go to the dentist regularly and have them check it for you, looking underneath and at the back  – the places you cannot see.

And keep talking…

 

 

 

 

 

 

 

 

The art of dying

While I was in hospital one of the nurses mentioned a patient in the mens’ ward who was 94 and had just undergone an operation very similar to mine.

It got me thinking.  This is not an insubstantial operation and, honestly, the recovery part is a bit pants.  Graft care, swallowing, washing, eating, mouth care, halitosis; general recovery from a serious dose of anaesthetic. Frankly, it’s not for the faint hearted.  So I am intrigued by why anyone who has had a good innings in life – and 94 is good innings – wants to put themselves through this for diminishing returns.  I’m not saying we should not operate on those well enough and keen enough to endure the effects.  But when does life at any cost supercede a dignified death?dignified death

Craig and I have first hand experience of this dilemma.  My father was diagnosed, at the age of 57, of non-hodgekinsons lymphoma.   He refused all treatment and marched towards death with his arms wide open and a large smile on his face.  For the last 9 months of his life we put our differences to one side and learned, for the first time, how to be father and daughter.  It was a privilege to be sitting with him throughout his final night, listening to the death rattle, watching his last breath escape from his body, knowing this was what he wanted.  He was better at death than he ever was at life.

By contrast Craig’s father suffered a huge stroke caused by a bleed at the bottom of his brain stem, when he was 82.  Overnight, he went from being a fiercely independent, fit, capable man to being a shell, initially in a hospital bed and latterly at home, where he relies on others to wash him, dress him, take him to the bathroom and attend to all his needs.  He lost his dignity when that stroke took him down, but his will to live, or will to not die, beats very strongly.

And our third personal example is my Papa, who was in his late 80’s when my Nana died.  They were inseparable and I would initially have laid bets that Papa would not be far behind.  Much to my surprise, and his chagrin, he continued to function for the next 4 years.  He cooked and cleaned for himself, and I would often find him in the kitchen trying to recreate his favourite treats from her old cookbook.  But he was lonely and he could not wait to die.  Once he confessed that he would wake in the morning and be disappointed that he was still breathing.  For him, it was not the fear of dying, he was just fed up of living.

And these examples, from the 94-year-old patient to my Papa, cause me to think about the art of dying and how I want to prepare for its eventuality.  Back in Victorian times this was a common conversation to have over tea; but somehow, with advances in medical science and our incredible National Health Service, we may have come to expect a long life as a matter of fact.  I watch my father-in-law and hear stories of older people being kept alive no matter what and I wonder at what cost to our dignity and self-respect?Budda 1

Given a choice, I would like an elegant death and at broad principle level, I’d rather a shorter life and a dignified death than a longer life requiring medical intervention or care.

Why are we not more accepting of dying as much as we are of the art of breathing?

 

 

 

 

Tribe

All my life I have been concerned about brand and reputation.  Not just from a company perspective but how I personally appear and show up in every work, social and personal situation.

Good and bad people

Rarely I have let my guard down.   I learned, from an early age, to hide fear, hurt, frustration, pain and tears.  These were for quiet solitary moments or for at the pictures, when it’s okay to cry like a baby at some story on the screen.

So telling people who I really care about that I had cancer was really hard.  In the beginning it felt like a weakness; I was apologetic and then would try to defuse the situation with some weak joke or quip.  Or I’d start asking questions about them – anything to take the focus away from me.  Those initial days I spent a lot of time in tears or nearly in tears. It seemed like I had a river inside and it was determined to burst its banks and cause a flood.

I also began to realise that I could not control the message, that people would talk and would share what they felt was appropriate for them and the recipient.  Once the news was out, I could not contain or manage it.  There was little spin to put on this, apart from to keep repeating that I was not a typical mouth cancer patient, never having smoked, a light drinker and never had the HPE virus.  I was also under 50!

So, recognising I needed my friends to help me get through this, I set up a Whatsapp group for those who had it on their phones.  For those I really needed I begged and cajoled that they loaded this app.  Friends such as Jill, in Canada, who is in her late 70’s, and Jenny, my most technophobic  friend, were just two examples of those who downloaded Whatsapp and learned to stick with it.  This group – my tribe/ network/ buddies/team – are exceptional individuals.  Collectively they are beyond compare.  They are there for me when I need to keep myself looking outwards. They offer comfort, treat me with love and derision when I get lost in my own self, chew the cud, tell stories and generally keep me going. Best of all, they don’t need me now to start or even keep the conversation flowing; they will chat amongst themselves, despite the fact that Whatsapp is the only way many of them have met.

I’ve stopped trying to present myself in a particular way – what my tribe have taught me is to be myself.  So when I’ve been frightened,  focused, driven, scared, happy or confused – they know.  It’s been such a revelation that by letting go, by being me and not worrying about my brand, just how much better I feel about myself and just how much I help and inspire others.

So today I want to acknowledge and be thankful for having Karen, Jenny, Jill, Haydee, Anke, Isobel,Clare, Lucy, Anna, Luci, Catherine, Carol, Andrea, Denise, Justin, Paul, Craig,  Tracey, Sam, Wendy, Sally, Amanda, Dani, Maria, Jan, Jodie and Julia as part of my tribe.

womenfun

And what’s amazing is there are others too, fabulous friends who have also reached out and offered love and support.

This blog is a result of me learning to be who I am.  And this is a direct result of the love of my tribe.

 

Here we go…

Standing by the window, I watch the first streaks of orange burst through the grey sky, making grey-black silhouettes of the trees which line the edge of the car park and the world beyond.  A solitary man, head bent, runs across the empty space, rushing to get into the hospital before the wind grabs him. The birds are only now beginning to wake.  I look at the clock – an hour to go – and wonder at the hours I have already been standing, still, heart beating, head swirling, rise and fall breathing.

Last night Craig dropped me at hospital.  I ran inside – a bit like the chap in the car park – eager to move, to talk, to smile, to ‘be me’. Two hours later, after both consultants had left my room, I was in no doubt about the hours and days ahead and the associated risks.  They had taken great care to explain in detail the various elements of the procedure, the order in which things would be done and the quite substantial risks attached.  They had even used my whiteboard to draw this out.IMG_6716  No burning question had been left unanswered.  Many responses left me scared and uncertain.  There were still unknowns ahead and they could not give me definitive and accurate responses.  I signed the waiver sheets, refused the sleeping pills they had prescribed and sat down to explore.

At crux times, when I cannot control and I can only react, I have learned to watch my mind dance in the fear.  It dances like a demon, hard and fast, twirling, jumping, pointing.  Questions like “what if…”. Worries such as “what about…” Imaginings around catastrophe, disaster, disappointment are all there.  But I also know, through practice, that this is just the initial stage, and that if I listen beyond the cacophony of noise, my subconscious brings the true questions, and many of the answers.  Am I strong enough, mentally and physically, to go through this?  Yes, I am.  Can I do anything different to change the cancer and the treatment I have chosen?  No I can’t.  Do I have the right team around me?  Yes I do.

And I let my mind settle enough to practice some deep breathing.  It’s just a change, a moment in time, I am fine, I will be fine, I can do this, I can visualise my way though to the other side.  I feel the softness of the bed beneath me, the quiet ticking of the clock is soothingly repetitive.  I watch the hands go round, ticking every minute forward.  My books lie discarded.  I look at my bag, neatly packed as if ready for my flight.  I think of others, collectively and individually, and I reach for my phone.  Jill’s voice soothes me, and the meta blessings at the end of her meditation session pulls me way beyond my current situation.Budda meta blessing

“May they be safe, well, at ease, happy and content and live their lives in harmony”.  I send this out to everyone that comes to mind.

I am calm now.  I recognise I can influence no more. It is what it is, until it isn’t.  I am on the surgery train; no stopping, getting off or pulling the emergency cord.  So when the consultant surgeon pops in to say hello and to find out how I am, I respond, “I’m ready, let’s get going”.

compression socksAnd to prove that you can never be too clever, outside my door is a poster on how to put on the hospital gown.  I had studied it the night before and managed to follow all instructions completely.  So, after struggling with the compression socks and eventually managing to get them on, the theatre staff are more than amused to find me keen as mustard and as pleased as punch, all dressed up but wearing my hospital gown backwards.  Apparently the poster is for visitors who are visiting infected patients. Only it doesn’t say this.  So I get ribbed mercilessly all the way down to theatre and have to endure the anaesthetist insisting I put the thing on the right way before he knocks me out.  And, they take off my knickers.  There is no dignity left.

knickers in a tree

 

Questions

curious childI learn a lot from my inquisitive child.  Never to give up if the answer I get doesn’t  make sense, to re-frame the question or wait to ask the same question at a different time or even to give the answer and ask the recipient what they think of the response (Roscoe is particularly good at this!)

So I’m sharing some of the questions related to my mouth Questionscancer which I’ve asked in the hope that they are useful for others in similar circumstances.

Initial Consultation

  • Tell me, in simple terms, what it is?
  • What is the best way to treat this for complete cure/eradication?
  • What is the length of this proposed treatment?
  • Are there any alternatives and if so what are they?
  • What are the pros/cons of these alternatives?
  • What are the side effects of the treatment you propose?
  • What is my survival success rate if we go ahead with your proposed treatment?
  • What are the long-term effects as a result of this treatment?

2nd Consultation

  • Will my HRT patch cause an issue, if yes, what is an alternative solution?
  • How does the tongue work ? (I asked this because of my mouth cancer and I wanted to start visualisation and memory recall)
  • What are the odds/chances of me needing a tracheotomy?
  • What can you do to avoid me having a tracheotomy?
  • What level of scarring will there be?
  • Where exactly will you take skin grafts from, are there any options on this?
  • How many dressings and wounds will I have immediately after surgery?
  • Will I need a feeding tube?
  • How much pain relief will I be given?. Can this be self-administered?
  • Will my taste buds be affected?

During Surgery

  • How much physical manipulation of the body is there likely to be?
  • Which part of the body will have the most trauma?
  • What risks are involved?
  • What can I do now to enable the operation to be a success?

Post surgery

  • How do I communicate with the nurses if I’m unable to speak after surgery?
  • What can I do to help the healing process?
  • Are there any spousal counselling services available?
  • Are there any camouflage make up sessions available?  (asked because my scarring is visible)
  • How much speech therapy can I have?
  • What guidance can they give to stop a re occurrence

– dietary guidance

– lifestyle guidance

– well-being guidance

  • How often will my dressings have to be changed?
  • Can the dressings be changed locally?
  • How long is it likely to be before speech returns to normal?
  • When can I drive?
  • How often do I see the consultant surgeon?
  • How often do I see one of his team?

On returning hometraveling-returning-home

  • What changes in my mouth do I need to look for that should have me worried?
  • What medicines do they give me to take home to manage the pain?
  • Can I get my neck wound wet? (I was worried about hair washing!!)
  • When will the plaster cast on my arm come off?
  • How do I best protect the arm wound?
  • How do I minimise the scar damage?
  • Do I need a special cushion for being in the car?
  • When do my neck stitches/arm stitches/tummy stitches/ mouth stitches come out?
  • When will we have a longer term prognosis?
  • Who do I call if there is a problem?