General


Vale to our beloved Clive France

September 25, 2023

On 20th September 2023, Clive passed away peacefully with his father Jack, his wife Jane, and his sons Henry and Zac by his side.

Utterly adored, devoted, deeply loving and loved – husband to Jane, father to Henry and Zac, step-father to Louis and Layla, son to Jack and Patricia, brother to Victoria, son-in-law to Paula, Michael and Cheryl, brother-in-law to Anna and Matthew. Oldest best mate to Patrick and Lois. Best mate to a few privileged others, you know who you are. Incredible and loyal friend to so, so many across the globe. Many, many hearts are breaking and will never be the same.

In many ways, Clive was intensely private with his health battle, particularly in these final challenging few months. There are a number of reasons for Clive’s relentless stoicism, but it boils down to one – his desire to keep living.   To not let his disease become the focus of the life he loved.

In contrast to his strong wish for privacy, he felt an overwhelming responsibility to share his journey publicly via this website and his mymisdiagnosis project, so that others in a similar position wouldn’t feel alone – and most importantly, to shout his message far and wide – TRUST YOUR GUT. Only you know your body best. If a diagnosis doesn’t feel right, keep pushing for the right answers. Clive kept pushing for answers, for many years. He continued to push for answers despite the lack of support from those he needed it from the most.  He was told he had a DVT despite displaying no symptoms of a DVT. He was advised he had an unusual vascular system, despite no clinical evidence to back this medical diagnosis up.  Clive faced much adversity over the years, yet he continued to remain positive, to tread his own path and fight his disease until the very, very end. You can read more about the evolution of his medical journey on the timeline of this website.

And now here we are. At the end of Clive’s physical presence amongst us, his spirit, strength, courage, grace, wisdom and brilliance will reside in the hearts and memories of the many, many people who loved him.

For Clive…

Fields of blue-bells, winding roads through trees,
Fine dining at the end of a day spent in the ocean,
The wind on your back, the sun on your beautiful face.
This is my hope for you, wherever you go.

Music, the kind that moves you,
That brings you to memories past and new,
A microphone, and a stage, just for you.
This is my hope for you, wherever you go.

To know how deeply loved you are, how admired and inspired you are
How full of grace, forgiveness, compassion, and life you are,
What an anchor and a home you are.
This is my hope for you, wherever you go.

To feel love in your heart,
To feel comfort, to feel freedom,
To feel full of peace.
This is my hope for you, wherever you go.

Vale Clive France
21 September 1968 – 20 September 2023


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.


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 depend on a variety of factors.

Age, maturity and their general understanding of what cancer means.

In my next post, I am going to discuss some of the approaches that I was advised, and what worked for me and my boys.

 


Coping through meditation

January 10, 2019

After my second cancer diagnosis, and the marriage breakdown, I knew that it would be important to get a handle on managing the inevitable stresses and strains that would come with such a situation.

During the period of time between 2015 and the procedure in June 2018, I had explored a variety of alternative therapies to try and get perspective or relief for my (misdiagnosed) leg pain and consequent sleepless nights.

I tried everything from acupuncture, hypnotherapy through to EDMR (Eye Movement Desensitisation and Reprocessing) and I will cover some of those experiences in other posts.

At the time, the buzz seemed to centre on so-called “mindfulness”. It seemed like everyone was a Mindfulness expert. It reminded me of a time back in the 90s when everyone seemed to have their own “life coach”.

But Mindfulness at its core is really meditation, and about being “present”. And when you’re dealing with something as confronting as cancer and mortality, a relationship breakdown, or any form of unsettling or stressful experience – clearing one’s mind and being “present” and “in the moment” is crucial to coping.

I attended a few classes at a local meditation/yoga school, and elsewhere. I was told to download the Smiling Minds app which I duly did.

When you first dabble in this space, one of the common introductory meditations is called the “body scan”. This is where, lying down, and concentrating on your breathing, you focus on one part of your body at a time, focussing on feeling the sensations from each part as you slowly traverse your body from head to toe. As your mind strays, you slowly bring it back to the point of focus (very similar to “transcending” which I will focus on shortly).

The first time you do this it is enormously relaxing and gives you a taster of meditation and its benefits.

A lot of people swear by this process. And it was enough to get me curious about the health benefits of meditation. But I knew the “body scan” would soon outlive its purpose and I needed something less regimented, more intense.

There are a few different types of meditation. It’s probably best to research each type and work out which type suits you best.

Deepak Chopra lists the five main types here in this article.

Different types of meditation

Vedic, Transcendental Meditation and Primordial Sound Meditation (which is something Chopra developed and teaches) are meditations generally practised in silence, repeating a designated Mantra (a non-descript word you repeat back to yourself, silently). This is sometimes called Non-Directive Meditation.

Mindfulness – like the aforementioned “body scan” mediation. This can be done seated or lying down.

Zen. This is the Buddhist seated meditation and is more of a life philosophy, and generally conducted in classes.

Kundalini is a combined form of Yoga and Meditation, which is much more physical and is a combination of sorts of the above.

Transcendental Meditation

I’d been reading about the benefits of Transcendental Meditation (TM) for some time. As a fan of the film director David Lynch I was aware of his foundation in the United States, that, at the time, was taking the process to schools in disadvantaged areas. The positive impact that TM was having on violence, truancy and more in those schools was considerable.

A colleague at work had also been practising Transcendental Meditation and spoke highly of its benefits.

And so I decided to explore the concept of meditation based around a Mantra. For me, the unstructured, do-it-anywhere methodology just felt right.

The idea of Mantra based meditation is, through repetition, and allowing thoughts to flow freely while we return to repeating the Mantra, is to go beyond to a deeper state of silence and relaxation and complete awareness.

The result is quite something, and if you can get into the zone, which comes with practice, you can truly physically feel the stress and strain seep away as you’re doing it. It can be done anywhere too, although it helps to have a quiet environment, free of distraction. And a chair with a supportive and upright back.

Transcendental Meditation doesn’t come cheap. You’ll be attending courses in person. TM Course rates in the US start from around $1000, £600 in the UK and $1500 in Australia.

Vedic Meditation

Vedic, a similar style of meditation to TM, is also taught in person and comes with a price tag which varies from teacher to teacher.

Primordial Sound Meditation

And Chopra’s take on non-directive meditation, “Primordial Sound Meditation” is an online course, and is about $300.00.

NSR / Natural Stress Relief

There is another way, and this may be useful if you just want to dip your toe in the water and see if this style of meditation suits you. It’s called NSR (Natural Stress Relief). It’s an online course, set up by an ex TM teacher and costs just $25 US. The site looks pretty basic but the information served up is excellent.

I began my exploration of meditation in an effort to relieve my leg pain (as mentioned elsewhere in this site).

What I uncovered though was far more powerful.

Techniques for modern living to help you manage stress, appreciate life, relax and truly live in the moment.

Enjoy.


In the beginning…

January 9, 2019

As someone with no real familial history of cancer, the last few years of my life has come as somewhat a bit of a surprise. I’ve always been a relatively healthy person.

Sure, I haven’t exercised perhaps as much as I should have, and I am sure I could have made some healthier lifestyle choices, but apart from a few months of high blood pressure (after marrying and the birth of my first son) back in 2004, my health has been stable.

Following the birth of my son, and the subsequent challenges that we then faced as a couple in London, England – we decided to emigrate to Australia to be closer to my then partner’s family, for the additional support.

Moving from my beloved London, England, to Brisbane Australia, away from my close friends and family, was never going to be easy, and this despite having lived in various places around the world. There was something very finite about this move and I found the process very unsettling.

We did it though, and despite a very challenging first few months in respect to my family’s health, we eventually got the children settled, and I successfully managed to transition my business.

Initially, I would travel backwards and forwards, and the frequency of those trips decreased over time.

Everything was going to plan, until one day, I got a phone call at work that was about to change everything.