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Clive France
  • Blog
  • Timeline
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  • Clive’s Memorial Service
  • The Story So Far
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    • Vale to our beloved Clive France
    • myMisdiagnosis social media campaign
    • Do we need to talk?
    • Thank you
    • 1 in 7 medical diagnoses could be wrong
  • About Clive

    Father of two amazing boys. Digital entrepreneur. Misdiagnosed; cancer fighter.


    About Clive


myMisdiagnosis – The global medical misdiagnosis database

May 25, 2022

As a result of my own misdiagnosis and some of the experiences I have detailed in this blog, as a web and app developer, I decided some time ago to address some of the issues I faced trying to unravel what was going on, to help others who may be in a similar position. 

The result: my company Internetics has launched a global directory of medical misdiagnoses, myMisdiagnosis. Please check it out.

It’s an important initiative – for example, a study of US medical diagnostic data, published in the Medical Journal of Australia, suggests that up to 1 in 7 medical diagnoses could be wrong. 

And in a separate study from The John Hopkins University reports that 1 in 3 cases of misdiagnosis results in severe injury or death.

It is also suggested that medical errors are the third leading cause of death, with heart disease and cancer in the top slots.

Those stats are shocking – and given the lack of patient-orientated data and misdiagnosis awareness – I realised there was a need to create something to address those issues. 

To encourage more discussion between specialists and patients. To inform, to educate. But unfortunately, what’s out there from a patient perspective, is hard to find or difficult to interpret.

The site is free to all, and you can search for diagnoses, misdiagnoses or various symptoms – allowing users to traverse a wealth of data.

We are also encouraging patients to add their own experiences to the system. Their information could potentially assist others around the world.

Please visit the site myMisdiagnosis, and I’d love to get your feedback.

  • General
  • Medical Misdiagnosis

Introduction

March 9, 2021

Epilogue

So what’s the matter with you?

Sing me something new

Don’t you know, the cold and wind and rain don’t know

They only seem to come and go away

Stand by me

Nobody knows the way it’s gonna be

Stand by me

Nobody knows the way it’s gonna be

Stand by me

Nobody knows the way it’s gonna be

Stand By me – Oasis, 1997

 

Introduction

Cursor flashing. Empty page. I stare at the screen as if I were staring into the abyss. It’s been this way for some time. For far too long.

I know I need to write my story. I want to write my story.

However, I have struggled to begin it for same the reason I struggle to blog. Or struggle to post regularly on social media. I consider myself a very private person. So a public outpouring goes completely against my character. I have to change this. Or this won’t get written.

Why does my story need to be told?

It needs to be told so that anyone, or a partner or friend of anyone going through some of the life experiences I have gone through, can learn or take something from my journey.

It needs to be told so my family and friends have the full picture. They’ve supported me throughout, and I hope this fills in some gaps.

Each time I have sat down to write I have found myself procrastinating, getting upset and stepping back from the computer.

To bring myself back to the job at hand, I’d play a song.

Music has always meant so much to me.

From the age of seven or eight, safely hidden underneath my Dad’s antique oak desk in the hallway, attuned to the Eurovision winning pop whimsy of The Brotherhood of Man drifting through the draughty hallway from the radio in the kitchen, through to a lifetime of musical discovery, music has always been my accompaniment, my companion, my therapy.

Every significant moment in my life, a song has always accompanied it. A lyric has articulated it. A singer has encapsulated it.

And so to elucidate my scrambled, sometimes obfuscated memories of joy and pain (and sunshine and rain), I devised a playlist of key life events in my life.

I immersed myself in each song, and as the memories came flooding back, I have tried to relay them here on paper.

I’m hoping this will help me write my story.

These words are my own*.

Clive France, 2021

*Although I am humming the 2004 song from Natasha Bedingfield as I write that.

  • Now

Henry, 2005 –

March 9, 2021

The need to share, the need to confide. The need for open discussion, the need for privacy. It’s the great dilemma of the early 2020s largely driven by social media. 

The confidentiality discussion with my partner Jane began in an Italian restaurant, in my current home city of Brisbane, Australia. 

The evening began as all our evenings began, with lots of conversation and laughter. She’s easy company, intelligent and compassionate.

The conversation turned to the latest issue that had been plaguing me since the toxic fallout of my marriage four years before.

My sixteen year old son, Henry, struggling with his workload at school, had recently taken a part time job at a well know burger joint. We had been encouraging him to get work through the holidays, but now we were back in the school term – he’d taken on multiple shifts during the week, which would mean finishing at 11pm, me picking him up at 11.20/11.30pm and that would mean he wouldn’t be getting to bed before midnight.

I had been clear before the term started, that he could work at the weekends, and maybe take one shift on during the week as long as it finished by 10pm.

But the week before he was to due come to me (I share the boys with my ex-wife – they are with me for one week, then with their her for one week) he emailed me details of the shifts he had accepted for the following week.

He’d agreed on four shifts on nights before school the next day, with three of them finishing past 11pm.

What then followed was a too-ing and fro-ing of text messages over the next few days, and a stubborn refusal on his part to change the shifts. 

I reached out to his mother by text. We were not on speaking terms. 

“I am having issues with Henry at the moment and McDonalds.

He has four late night shifts planned for next week, on nights before school, on my week, after I told him he could do one weekday shift as long as he his home by 10pm – and whatever he wants Friday to Sunday 5pm. I think this generous. I have been very clear about what he can and can’t do and he is defying that.

Three of these shifts would mean he’s not asleep til gone Midnight which is what has happened previously. 

I have told him he can’t do them, he’s refusing to budge. If he does that I may have to call McDonalds.

These are crucial years at school, he is tired, struggling with schoolwork and his interpersonal relationships, he’s getting into school late – his priority must be school not McDonalds.

What is your position please? No doubt he will have discussed this with you.”

As was often the case, I didn’t hear back.

I told Henry I would ring the branch if he didn’t comply, which I ended up doing (albeit simply to establish how he could go about changing those shifts) and still he refused.

I was to later learn that his mother supported him working those shifts, despite the fact that, when he was with her, he was often late to school as evidenced by numerous messages from the school, and the fact that, according to the school, he was struggling and would have to change his subjects or risk outright failure.

He was in the two final years of school – and he was going in late, tired, angry and was doing everything he practically could do to avoid doing any homework. He would complain when I pressed him about his homework – saying it is easier at his mother’s house as, “She is never there. Leaves early, comes back late.”

Something had to give. And he didn’t have long term plans to work at McDonalds, so surely school had to be the priority, right?

As always, I picked the boys up on the Sunday. He got in the car. He looked angry. The conversation quickly turned to McDonalds.

“No, I haven’t cancelled the shifts. In fact I have one tonight” he said indignantly.

A spirited conversation followed, and after we arrived back at my house, I left him there, as I wanted to avoid any further conflict. 

I would wait until he had left for the shift before I returned back to the house, to spend some time with my other son Zac.

With Henry at work, I reflected on the conversation. I also reflected on the fact that I still had his confiscated iPhone (he had broken it for the third or forth time, and I was insisting on it’s repair) and thus had no means of contacting him.

I got ready for bed, and tried to reassure myself that he’d be back and all would be well. I ruminated on my own youth and part time jobs at his age, and how I would get around at night without the luxury of a mobile phone – and we were OK, and he’d be OK on this one occasion too.

The clock turned midnight. Henry was not back. I checked the bus schedules. The last bus had finished for the night. 

No Henry in sight.

I put my clothes back on, and I ventured out into the night. I drove down the road from our house, which is a nine kilometre drive away from the centre of the city. I looked along the pathways to see if he had walked home. Nothing.

I get down into the city. Whilst Brisbane is a relatively safe city, it is still not without its social problems. As with anywhere these days, drink and drugs are an issue. I drive all over the city. I can’t find him anywhere. 

I am petrified. My heart is pounding. What have I done? Where is my boy? The boy I loved so dearly. The boy, who we had almost lost, at the age of one.

You got wires, goin’ … Continue reading

  • Reflections

Childhood

October 30, 2019

I’ve nothing much to offer
There’s nothing much to take
I’m an absolute beginner
But I’m absolutely sane
As long as we’re together
The rest can go to hell
I absolutely love you
But we’re absolute beginners
With eyes completely open
But nervous all the same

Absolute Beginners, David Bowie, 1986

I’m not sure where my need for privacy stems from, but it has clearly been a part of my personality for as long as I can remember.

As a child and teenager, I exuded varying levels of sometimes misplaced confidence. Misplaced as I had had a challenging upbringing. I should have been an unassuming and muted student, but instead I became a disruptive, loud and annoying child and teenager, eager to be heard, with scant regard for who I irritated. It was attention-seeking behaviour, and I have now come to realise it was also a counteraction to a sometimes challenging upbringing at home and being bullied at school.

Had social media been a part of my life back then, I often wonder if my need for privacy would have ever taken hold of me. I can easily imagine an alternative me pouring out my soul onto social media. Friending all and sundry. A far cry from how I manage my social media accounts today. Which is to largely avoid it.

In some ways, I am glad I didn’t have the stress of social media and the constant validation that teenagers seek from it, to contend with back then. It would have been all-consuming I am sure, and I can imagine I wouldn’t have benefited massively from it.

As I exited my teenage years, I set about changing myself. I knew I was broken. I knew I had to rebuild.

I grew up in several towns in-between London and Brighton – and although formative years were spent bouncing from one town to the next every four years or so, from about the age of eleven we settled in an affluent commuter belt town about thirty miles outside of London.

As one of two children from middle class, self-made parents, educated privately at school, on the surface I had little to complain about. I’m very grateful for the opportunities that my parents provided for, but rudderless and clueless, I scuppered my chances, and ultimately this was a deeply unhappy period in my life.

Leaving that school and moving on to college, life changed rapidly for the better. And with a modicum of maturity and a little increased self-awareness, I started to discover the person I could be.

Bizarrely, the first change was when I took myself off to my first haircut. I was sixteen. I wanted shot of my much ridiculed mop of hair. One might call it a bowl haircut. I had the lot lopped off, and I replaced it with effectively a crew cut, and a striking new look.

It was a turning point for me. So much so that I became obsessed with my hair. That something as simple as a haircut could affect my life in such a positive way seems almost too ridiculous to believe, but it was true.

With the new haircut, I needed new clothes. I took myself off to the shopping centre, purchased a couple of new tops of my own choosing. This was living!

It was the mid-eighties. Frankie was asking us to Relax, Lionel wanted to say Hello, and George was carelessly whispering for our aural pleasure. It was a golden time for pop, and Grandmaster Flash was making waves and that emerging hip hop scene was about to explode.

College nights down at the local disco , complete with a slow dance at the end, to try and get a snog in. With my new haircut, getting that snog wasn’t as elusive as it had been, and this is where I met my first proper girlfriend, and the six-month relationship (hey – at that age, that’s long term!) marked the beginning of my journey from adolescence into adulthood.

Through this period, I met my closest male friend, Patrick. Highly intelligent, fiercely loyal, wickedly funny and delightfully mischievous, we became as thick as thieves. He knows me better than almost anyone. He is my sounding board, my confidante, my devil’s advocate, and I’d be lost without him. His childhood was equally complex as mine, and without a doubt this bonded us together.

  • Reflections

When to talk to children about cancer

March 2, 2019

The first time I was diagnosed with cancer, around our trip to London in June 2016,  I really didn’t know what to do. I was struggling to process the news myself, let alone discuss it with the people around me. There was so much else going on around the family any case, that in some bizarre sense, focussing on my cancer seemed almost like a selfish indulgence and that I should just get on with life as normal.

And as a fairly private person, I didn’t want or need to broadcast the news with others. In fact, once I had accepted what was happening to me, and what was going to happen to me, I didn’t particularly want to discuss it at all.

Living in Australia, and being so far from my family in London only exacerbated this situation. My poor parents, receiving the news through a Facetime call from one side of the planet to the other, obviously wanted all the information, which I duly supplied. But I found it hard to talk about it.

I didn’t want to worry others and most of all, I didn’t want to worry my children. My two boys, who at the time of my first cancer in November 2016, were aged ten and twelve, had already experienced many other dramatic familial life events, and I didn’t want to overload them with yet another one.

I wanted to get into the hospital as quickly as possible, get the job done, get out and get on with my life.

As with everything in life, there’s no fixed rulebook to follow when you’re diagnosed with something as serious as cancer. And there’s so much to take in and process for yourself, that it’s easy to feel overwhelmed and pretend it’s not happening. With a hidden cancer like Prostate Cancer, of course, it is easier to do that. Others are not so “fortunate”, and have to face these things head on.

So that’s what I did – I swept it under the carpet. I agreed with my partner that we’d tell the boys I was having an operation to have a hernia removed, as the procedure for robotic prostatectomy is very similar.

The children were of course very matter of fact about it all as a lot of children are.

The operation came and went. The recovery process began.

During that recovery process, something changed in me. For some reason, I felt an overwhelming desire to discuss it with the children. That in some way, by hiding it, I had been dishonest and they had a right to know. I really wanted to ‘fess up.

I discussed with my partner at the time, and it was concluded that in doing so I’d be possibly doing it for my own benefit and not theirs. Why worry them now? I thought she had a point. So I left it.

But as time marched on, I felt increasingly that was the wrong thing to do.

I certainly had nothing personally to gain from talking to them about it (other than clearance of conscience perhaps) but I wanted them to know what had happened to their old man – they had a right to know, that it was important for them to know. I felt like by keeping it from them I was somehow being dishonest with them.

Had the outcome of my operation been different – then, of course, I would have sat them down and discussed it with them. But I didn’t need to.

I left it. But it didn’t feel right.

So when cancer number two (my leg sarcoma, misdiagnosed earlier as a DVT) was diagnosed towards the end of February / early March, I wanted to do things differently. They were a year or so older. And by this point, I was separated from my partner. The landscape was very different.

But before I did anything I wanted to get some professional advice about how to approach the issue.

I asked my surgeon for a referral and he put me in touch with a psychologist, Sam.

We discussed a variety of issues surrounding my situation but my main concern was how to broach the issue with the children.

My instinct was to delay telling the children as I processed the information myself.

Sam felt this was wrong.

She indicated that it was likely that the children would start to get an idea that something was wrong.

That they might overhear things as adults around them discussed the situation.

There might be a danger they would draw their own conclusions from what they heard and it may worry them more than it should.

That they might hear it from someone else.

That children are not easily fooled – they will suspect something is wrong.

Sam told me I needed to take control of the situation as quickly as possible, and manage the dialogue myself.

That in doing so, this would give the children the best opportunity to process and cope with the realisation that someone very close to them has cancer.

That in doing so, the children will not feel excluded. That they won’t feel as though they’ve been left out.

She also indicated to me that I was right to have wanted to tell the children about my previous cancer, even in retrospect.

That children have a right to know.

Discussing your diagnosis with children and opening that channel of communication gives children the opportunity to process the information. To ask questions. Discussion. To let them know it’s OK to be emotional about it. It’s OK to be angry. Sad. Indifferent.

That it’s not their fault.

We sometimes don’t give kids the credit they deserve – they often can cope. And with a caring, informed approach, they will get through it. And learn from it, and grow as human beings.

So, with all that in mind, I set about talking to them.

What you say to a child about cancer is really going to … Continue reading

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  • Latest articles

    • Vale to our beloved Clive France
    • myMisdiagnosis social media campaign
    • Do we need to talk?
    • Thank you
    • 1 in 7 medical diagnoses could be wrong
  • About Clive

    Father of two amazing boys. Digital entrepreneur. Misdiagnosed; cancer fighter.


    About Clive



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