Let’s never let cancer create FOMO!

I’ve been reflecting a lot lately! A question popped into my head regarding whether or not I had missed out on things as a result of battling cancer at such a young age. The modern-day FOMO if you will.

I don’t pretend for a moment I’m still (never was) one of the cool kids – but for the un-inducted; FOMO = Fear Of Missing Out.

The question was sparked really after an application for Vitality Life and Critical Illness insurance. It’s something my wife and I have talked about doing for years, and we both liked the idea of getting rewarded for getting off the sofa and doing some exercise!

Needless to say, of course I declared my medical history – a childhood tumour – 28 years ago and early indications suggested that this wouldn’t be a deal breaker given the length of time since diagnosis, treatment, and subsequent remission.

I agreed for them to gain access to my medical records and waited for the underwriters to assess my case. Meanwhile, my wife was enjoying her free weekly Starbucks and Cinema tickets for being active.

I didn’t ask for a copy of what the GP sent, didn’t see the point – but the decision came back that I could have life insurance (with an additional premium) but no critical illness cover because of a history of a tumour. A bit gutted really! Not that I’d been denied, more that I’d been given some false hope up front.

The only silver lining in all this was that my monthly premium for just the life insurance didn’t meet the threshold for all the rewards – but because it would have done and it was their decision to deny part of the cover – I get them anyway! Result!

Of course, cancer at the age of six has had a lasting impact. As I’ve already shared, I lost complete vision of my left eye and many more that I’ll share in due course. But I don’t think I’ve missed out on anything at all.

Sure, I missed a whole year of school during treatment. I wasn’t allowed to play rugby – but not gutted at all during those cold winters when my class was being battered with the elements and I was snug and warm in the school swimming pool! Ha!

The path at times over the years has been a tough one; physically and emotionally but throughout all of this it has shaped the person I am.

People always say I’m so laid back and chilled, nothing phases or stresses me. Rest assured I’m not so laid back that I don’t work hard! But in thinking about this constant feedback I’ve had, certainly during my professional career, to some extent, I link it back to that six-year-old self.

Since that experience, no subsequent life events or moments have come close to the memories of pain, sickness, fear, chemo, surgery – probably a never-ending list. And having come out the other side, I’ve always had the mentality when times get tough – well it can’t get any worse than that and so I can conquer this.

I do consider myself incredibly lucky and blessed to be where I am today.  Over the years there have been a number of potential late effects that luckily I’ve not experienced.  One of the biggest risks was around infertility – but I have been blessed with the most adorable daughter, Emilia, who has just turned two.

Parenthood certainly brings a whole new perspective, and I couldn’t imagine what it must have been like for my parents – and likewise, all those going through the same experience today.  Life really is a precious gift!

emilia

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What Cancer Cannot Do

My dear Aunty Jill passed away recently after a 14 year battle with cancer.  Today was her funeral, and the following poem was shared during the service that really resonated with me so I thought I would share.

‘What Cancer Cannot Do’

Cancer is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

Dr. Robert L. Lynn

The rhabdomyosarcoma diagnosis

Rhabdomyosarcoma…is quite a mouthful to say, especially for a 6-year-old.  This type of cancer is a disease in which malignant cancer cells form in muscle tissue; usually beginning in muscles that are attached to bones.

Back in 1990, it was most commonly found in the necks of sufferers but extremely rare in children, and so my situation of behind the left eye and nose was even more unusual.  My oncology team was led by Dr. Jon Pritchard, a pediatric oncologist at Great Ormond Street Hospital; a place I called a second home for the next 12 months.

jon pritchard
Source: The Lancet

I couldn’t for the life of me remember what he looked like, but good old Google images.  I definitely remember the face now, albeit a slightly younger version.

My parents certainly had more interaction with him than I did, and during these times I would often be entertained by a play-specialist; something that Dr. Pritchard established in order to help sick children like me reach an understanding of their situation.

In doing a bit of research into the man who diagnosed me, I’ve now learned that he sadly passed away back in 2007, the victim of a brain tumour.  Oh, the cruel irony!  His obituary in the Guardian reminded me of his Manchester accent.

My chemotherapy memories are far from pleasant; being pumped full of a cocktail of drugs, many of which were to combat the side effects of each other, made me incredibly sick.  Vomiting into the recycled cardboard bowls constantly for days meant that I would often eat nothing but fluids – and the awful taste of bile in my mouth is something I can still recall to this day.

I became extremely proficient in board games; Connect 4 and Othello were favourites of mine that I would play for hours on end with my parents.  Each round of chemo would typically see me in GOSH for a week, and I was greatly blessed by the fact that I always had one of my parents with me at all times.

Oh yeah, the other thing you should know about this crazy time was that my Mum was 7 months pregnant with my younger brother.  He was born in October and luckily the stars aligned to allow him to be born by C Section in between my rounds of chemo.  He spent much of his first months of life in hospital with his sick older brother; resulting in his very first word being ‘doctor’.

Upon returning home after each burst of chemo, within a couple of days, my temperature would spike and I was rushed to our local hospital (All Saints Hospital) to be pumped full of antibiotics to combat the fact that I no longer had an immune system.  Chemo is great for killing cancer, but also great at killing those white blood cells.

During the first stint at All Saints, I remember waking one morning to find hair all over my pillow.  At six, I took most of these treatment side effects in my stride – I knew no different and I think my innocence and naivety made them more bearable for me at the time.  Or so I’m telling myself now.

 

 

The events and weeks preceding my diagnosis

Childhood memories

Every story starts with Once Upon a Time, doesn’t it?

Thinking back to those early days of childhood brings back many a happy memory of birthdays, first day at school, holidays in Spain, camping trips with grandparents, new toys, and more.

It was August 1990, I’d just turned six and was now the proud owner of a new BMX bike.  Oh, the adventures we would have together, riding through parks and woodland in the quiet neighbourhood I grew up in.  Little did I know that it would be a good year or so before that bike actually saw any adventure.

Like most of us, now in our mid-thirties (it pains me to admit that), childhood memories are somewhat foggy at times.  Some moments so vivid and clear, and others attached to a faint recollection.  There may well be a few gaps in this story – maybe I’ll run it past my mother’s eyes at some point to fill in some blanks.  But here goes……

School summer holidays of ’90, we had a family holiday booked for the August bank holiday week at the end of the month – off to Devon for a change.  But in the weeks preceding that I started to experience severe headaches.  Dutiful and caring parents took me to the GP who simply put it down to a fever or virus and to continue giving me Calpol; promising those symptoms would subside.

Quite the opposite.  Well before the walk-in centers and out of hours clinics of today, the headaches got worse and on a Saturday morning, I had what can only be described as the worst nose bleed a six-year-old has ever experienced – lasting for over 2 hours.

At that age, with limited life experience, I didn’t really understand the magnitude of the situation other than the knowledge that this shouldn’t happen, right?  And when can I go outside to play?  The same GP was summoned to the house, and despite witnessing the carnage that lay within an old ice cream tub; the blood and tissues, again put it down to fever and the warm summer temperatures.

I suppose my parents at the time felt a bit like they were being fobbed off and not taken seriously.  A fever doesn’t cause a severe nosebleed does it?  At the beginning of the week after what shall hereafter be known as ‘Bloody Saturday,’ my left eye started to go awry so I was taken to my local opticians for him to have a look.

A quick interjection here – I’ve always loved going to the opticians and wearing those odd glasses with multiple lens combinations; tasked with reading those tiny letters.  I still enjoy it to this day; although even with glasses now, I can’t see the bottom line!  Anyone else – or just me?

My eye was not behaving as it should, and upon hearing the tales of my persistent headaches, the alarm bells were sounding in my optician’s mind (Timothy Woolley – probably retired now, but we owe a lot to you kind sir).  For the first time, someone actually listened to my dear mother and took the situation seriously; instructing us to immediately visit the Maidstone Eye hospital, in Kent so I could be seen by a specialist.

This was the start of a series of events that would shape the rest of my childhood, teenage years and now into adulthood.

I don’t really remember the visit to that eye hospital – I’m told I fainted whilst there – so no surprise there then!  It didn’t really bring any answers, other than a confirmation that my eye indeed was not right, but with the headaches, the nosebleed and subsequent passing out in front of their very eyes, they sent me to a local hospital to home – All Saints’ Hospital in Chatham, Kent.

This would be the first of many visits to that hospital – also in fact where my dear siblings were born.  It’s no longer there now, demolished at some point in the late 90’s I think and replaced with houses and flats.

I spent the night at All Saints’ Hospital with a suspected diagnosis of some severe sinus problem.  They didn’t really know, they weren’t trained to spot the telltale signs of a serious illness.  And so the following morning, I was taken up to London by ambulance to Great Ormond Street Hospital.

Literally, upon arrival at GOSH I was sent off for various tests; CT and MRI scans would finally unearth the real reason behind the persistent headaches, the Bloody Saturday, the eye and vision problems.  I had a tumour the size of a small orange behind my left eye and nose.

I don’t remember when it happened, I’ve known nothing different since but at some point around this time I lost the vision in my left eye.  The pressure that the tumour had placed on my optic nerve had caused irreversible damage that left me with an eye that sees complete darkness – no light or shadows or sensitivity, or anything.

I suppose this was the first real long-term effect of having Cancer.  You were wondering when I was going to bring up the C word, didn’t you?  But losing the sight in that eye at such an early age meant that I adapted quickly – to the point now where I’ve no memory or recollection of having sight in both eyes.  If you close one eye now, you only lose about a third of your peripheral vision and so I quickly learned to live with it.

The real heroes at this moment in time were my parents.  Upon receiving the devastating news that they now had a child with cancer, they were keen to be able to do research into the type of cancer, the possible treatments, etc.  There was no Google, or the internet back then – information was hard to come by and so they wanted some time to do some due diligence.

It was at this point that the severity of the situation was announced, “Mr and Mrs Turner, your son is extremely sick – even if we commence with chemotherapy today, we can only give him a 7% chance of survival – based on the size of the tumour, the stage of diagnosis, our treatment protocols and experience with other patients!”

7%, a mere single digit, a floundering probability – take 10 kids like me at the time, only one would survive and that wasn’t even a guarantee.

I started chemotherapy that day.  We never went to Devon!