What not to say to someone who has cancer

February 19, 2019

Mostly, people are amazingly supportive. And people mean well. Problems seem to start to occur when people feel the need to philosophise. We don’t need Dale Carnegie. We just need your listening ear and friendship.

I’ve heard some absolute corkers since my diagnosis, and friends have told of others, so here’s my top ten or so list of things not to say to someone who has cancer.

You’ll be fine!

Really, since when did you get a crystal ball? Cancer is unpredictable and frightening. Of course, they’ll be positive, think positive and hope for the best – but this comment belittles the gravitas of the situation.

You’re too young to be getting cancer

Yes, this is true.  But it’s not helpful to be processing this on top of everything else that has to be processed.

Everything happens for a reason

Yes, doesn’t it. They must have been a right little shit to have got this – that explains everything. This throwaway line is quite hurtful – almost as if you’re being taught a life lesson in some way. Don’t say it.

We’re all going to die someday

Yes, we are. But hearing this sort of philosophical nonsense that doesn’t make it any easier.

You must feel like you are on borrowed time?

Seriously? Yes, I have heard that people say this. Don’t be one of them.

Just stay positive

Sometimes it’s hard to positive when you are afraid of dying. Of course, there’s no doubt positivity helps people get through these situations, but it’s not helpful to be reminded to do it – most of the time, they’re trying to be positive. Nobody can be positive all the time, and it doesn’t help to be told to cheer up. Sometimes, a good old fashioned mope can do us good too!

So-and-so just had this-and-that, and such-and-such has just been diagnosed with…

We’re really sorry for so-and-so and such-and-such but it doesn’t make us feel better hearing about other people’s downfalls. We feel for them, and anyway it just adds more anxiety to the situation.

I’m worried about you

Who’s got the cancer? Don’t take over their emotional rollercoaster with your own set of emotions.

I know how you feel

Unlikely. You don’t, you really don’t. Listen and they’ll tell you how they feel.

You must feel like you’re waiting for the axe to fall?

Nope, but if I had an axe right now… In all seriousness, this is the worst possible thing you could say to someone. Don’t say it!

Technology is amazing – they’re finding cures all the time

We know you’re trying to reassure and give hope, but unless there truly is some miracle cure coming to market, this is giving false hope, and it isn’t helpful.

More: What to say to someone who has cancer


What to say to someone with cancer

February 18, 2019

I’ve been there, we’ve all been there. What do you say to someone when your first learn about their diagnosis? You have to say something… don’t you? Or maybe not? What if they don’t want to discuss it? Or perhaps they do? And if you keep silent, how do you ignore the pacing and pounding of the huge grey elephant in the room?

As someone who has been on the receiving end of a variety of different approaches and well-meaning health discussions, I think I might be reasonably qualified to answer this question. However, the simple fact is that everyone is different. That said there’s probably a few fundamental rules to abide by that would apply to most. And that’s the purpose of this post.

How to communicate with someone who has cancer.

A key recommendation would be to assess the situation and be led by the person with cancer. Let them steer the discussion. If they want to talk about it, they’ll let you know. If they’d rather discuss politics or their kids, then let them take the lead and join in.

When you’re diagnosed with cancer, you run through a series of emotions, running from anger, fear, worry, hope, joy… and knowing what stage the person with cancer is at, is going to be essential to communication. And you find that out by listening.

Listen.

Ask them if they want to talk about it. If they do, let them talk. If they don’t – don’t assume they’re bottling it up. It’s not your job to uncork them. Sometimes, when you’re processing your predicament, steering your mind away from reality can be really helpful.

Let them know you’re there for them.

Silence is OK.

Don’t feel the need to plug every gap in the conversation with well-meaning and philosophical dialogue. Just enjoy the silence. They might be processing their thoughts in your company.

Listen again.

If they do start talking about their predicament, then listen. Acknowledge what they’re saying. Tell them you’re sorry. Ask them how you can help, just don’t try and offer morsels of wisdom or start quoting from self-help books. That’s well-meaning but irritating.

Don’t overload them with your own emotions. If you do feel emotional, try and hold it back, unless you really feel like your friend will benefit from it. By all means communicate your feelings about the situation – angry, sad, whatever it may be – but keep those emotions in check.

Talk about other stuff too.

Most cancer patients don’t want to discuss their predicament 24/7. Again, you need to read the situation, but personally, I have found it unhelpful to talk endlessly about my situation.

It’s nice to talk about normal things too.

You don’t need to always bring it up every time you see them.

For me, this is a big one.

Once you feel you’ve had a chat, acknowledged their predicament and so on, don’t feel you need to bring it up each time you see them. If they want to, then great. But a lot of the time, they just want to move on, they don’t want to endlessly dwell.

If they want to talk about it, then by all means chat. But otherwise, just leave it and be led by them.

More: What NOT to say to someone who has cancer

 


Australia bound

January 30, 2019

I have done a fair bit of travelling over the years, but I was definitely more a short haul traveller, due to the logistics of running a business and needing to remain close to it.

As such I was a frequent visitor to Europe, taking full advantage of the boom in short-haul travel back through the nineties and into the noughties. The occasional visit to America, but not much further.

Australia had been fairly low down on my list of must-get-to places – simply due to the twenty-four plus flight to get there – so it was going to take something pretty special to get me down under…

We met at a mutual friends’ party in London. I was thirty-five at the time. As things started to develop she asked me to go with her to Australia for her thirtieth birthday.

I accepted the invitation and a month or two later I travelled out to Australia.

Following the disorientating flight, I was immediately whisked from the airport to her party in central Brisbane, on the river.

I’m not sure what I was expected from Australia – my familiarity with the place seemed to stem from the Aussies I knew in London, and from re-runs of Skippy, the Men at Work / Down Under music video, and Paul Hogan / Clive James / Dame Edna.

Having lived in places like Turkey and Spain, Australia seemed very familiar.

Many towns and streets were named after British towns and streets, although often the pronunciation left something to be desired.

For example one day I spied a town on the Gold Coast called Arundel. Now, I know Arundel in England – my parents live near there and it is a beautiful market town with a medieval castle.

At a function, I asked a local what Arundel was like. “Arundel?” he said. “Anyone heard of Arundel?”, he continued. The men around him look mystified until one piped up: “Arundel? Awwwww – you mean “Ah-Raaann-dull”. It seemed my pronunciation left something to be desired.

But despite the bastardisation of town names, everything else I encountered seemed very familiar, and for want of a better word – very “liveable”.

To be continued.


Here’s a thing… Fixation Error

January 24, 2019

How could so many medical professionals be so wrong? Fixation Error.

So first there was a set of scans and a diagnosis from one specialist determining my leg issue to be a DVT (Deep Vein Thrombosis). And then a second diagnosis and scans from a highly regarded specialist in the field, confirming the same thing. Another ultrasound weeks later to review and further confirmation. Further diagnoses over the next couple of years, all confirming the same thing – despite my continuous questioning – and then, of course, it turned out not to be DVT but a tumour…

A conversation with a good friend in the medical profession led me to a concept that helps explain this – not only in the medical profession, but also in other industries such as aviation, and in many ways touches us all in different ways.

It’s a concept known as Fixation Error.

Broadly described, Fixation Error is when a practitioner focuses solely upon one single aspect of a situation, to the detriment of perhaps more relevant or pertinent information. Other pointers, however obvious, are missed as the practitioner’s focus remains on the original diagnosis.

A good example of this is in the aviation industry and one particular case that is studied by trainee pilots – United 173 over Portland, Oregon.

In this case, the pilots were about to make the descent to the airport but became engaged in a debate as to whether the landing gear was down or not.

Just after 5pm, the plane, carrying 189 passengers, when the landing gear lowered, slightly yawed to one side and there was a thump. The crew noticed that the green landing gear light wasn’t lit. The captain of the plane radioed to air traffic control and explained that they had a landing gear problem.

The plan was to orbit the plane while the situation was assessed. The flight attendants confirmed, via a visual indicator on the wings, that the landing gear was in fact locked down.

Half an hour later the captain informed air traffic control that he planned to remain in the holding pattern for another fifteen to twenty minutes. The plane was down to 7000lbs of fuel on board,  about half the fuel they had left when they last radioed control.

The captain was in no mood to hurry the plane down. The debate about the landing gear continued. 

The captain asked his crew how much fuel they’d have left after another fifteen minutes of flying. Not enough was the reply, they’d be very low on fuel. 

At 18:07 one of the plane’s engines lost power. Six minutes later both engines had gone.

The plane was going down, wasn’t able to make an airport and crash-landed in woodland. 

Miraculously only ten people lost their lives that day.

However, no one needed to have died, as had the captain attempted to land they would have done so safely, as the landing gear was in place and functioning.

But due to fixation on the issue of landing gear, they became oblivious to the one issue that was more pressing – fuel shortage.

This is known as Fixation Error.

In the aviation industry, the concept of Fixation Error is widely discussed and analysed and has lead to change. 

Want to see this action? Try this widely used puzzle. Try and solve it.

You need to make a necklace that costs no more than 15 cents using the four chains below in the image. It costs two cents to open a link, and three cents to close it again. 

(***Solution at the bottom of the post.)

Fixation Error is rampant in the medical profession.

In my case, the original diagnosis became the fixation point. The first set of scans and diagnosis pointed to a DVT (Deep Vein Thrombosis).

I’ll always remember that day. The operator, scanning my leg, went very quiet. What is it? I enquired. She informed me that she needed to refer it to a doctor. She left the room to do that. 

When she came back I enquired again. “Well, it’s not what you think“ – meaning that she thought I thought it might be cancer.  (Oh, the irony!) “It’s a DVT”,  she said.

Human error. That much I understand and accept.

However, what should have happened next should have addressed the error. I was referred to a specialist in her field, a very highly regarded Vascular Physician at a good hospital.

This particular specialist didn’t spend much time examining my films. She read the concluding report and started to talk about DVTs and their management.

Weeks later the same specialist ordered a second set of scans was ordered her, to be done by a different organisation and another written report confirming the DVT, location and size.

I continued to talk about the pain, the lack of sleep. I even enquired about the fact that I didn’t have any of the usual symptoms of a DVT – redness and swelling. It was explained to me that I had a dual vein vascular system and the blood was finding other ways to circulate around my leg.

How could a different Medical Imaging organisation get it so wrong again? 

And how could an expert in her field, conclude for the second time (at this point the third diagnosis) that it indeed was a DVT?

Because of this chain of events, and despite my gut feeling that things weren’t right, my fate was set in stone.

And no matter what I would say to the many, many specialists that I would see over the next few years, it seems I was held prisoner to my original diagnosis.

Years later, yet another request for yet another diagnosis led to a different vascular specialist approaching things from afresh and conducting his own set of scans, and in house.

His conclusion was quick and resolute. “This isn’t a DVT. I think it’s a tumour.”

And with those words, in my heart of hearts, I knew we’d solved the puzzle.

I … Continue reading


So, what’s been happening? A summary.

January 13, 2019

Here’s a very brief breakdown of what has been happening over the last few years. I will go into more detail in the blog / “my story to date” section, but this should give you a good overview of what’s been happening.

A bit of background – as of the time of writing this summary I have recently turned fifty years old! I’m a dad of two boys, run a digital agency specialising in the mobile development space, and am recovering from cancer. More on that later.

I hail from London, England, but met and married an Australian girl and in 2008 we moved from London to sunny Brisbane on the Queensland coast, with our two gorgeous boys, Henry and Zac.

Tragically, in 2011, my wife lost her leg as a pedestrian in a car accident. That’s her story to tell, and I’m not going to focus on it here.

Six years after that accident, in July 2017, and in the midst of my own additional set of health problems, we separated.

Let’s now hop back a few years, back to 2015:

May 6th 2015 – I went to the doctor complaining about pain in my leg that was keeping me up through the night. I was experiencing very broken sleep each night. This had been going for a few months but seemed to be building up in intensity.

June 15th, 2015 – With the symptoms worsening, and my lack of sleep increasing, I was sent for X-Rays of my knee, hip and femur. The scans revealed very little. I trialled some mild painkillers to help me sleep at night.

27th August, 2015 – With the lack of findings and sleep becoming more and more elusive, I went back to the doctor and was referred to a Radiology Clinic. I had an ultrasound and as a consequence of this, I was diagnosed with a DVT (Deep Vein Thrombosis). The length of the clot was 10cm! I was shocked, but could this explain the pain and lack of sleep? I wasn’t surprised.

I was referred to a DVT specialist at a local hospital. The specialist confirmed the diagnosis of DVT and put me on a course of blood thinners.

I ask why I haven’t had the typical symptoms from a DVT: redness, swelling and so on, and it was explained that I have a dual vein system, and rather than the blood collecting behind the DVT and causing those sorts of symptoms, the blood is able to circumnavigate it’s way around the DVT. Hence no redness, no swelling.

23rd September 2015. With various tests being conducted around this time, one area for concern was a blood test for PSA (Prostate-specific Antigen) proteins. An elevated PSA result is often the first step to a Prostate Cancer diagnosis and so I was referred to a specialist prostate urologist. I was advised to have an MRI for that meeting.

30th September 2015 – The urologist indicated, that as a consequence of the MRI findings, that there was a chance that I could have prostate cancer but it was at a very early stage. Due to the fact that I was on blood thinners for my DVT, he wanted to delay the scan.

2nd October 2015 – the lack of sleep continued. Back to the doctor, more scans. No new information uncovered.

15th October 2015 – follow up DVT ultrasound scans are ordered, and these confirm not only the DVT but also no reduction in the size of the DVT.

In the months that follow, my sleep situation worsened.

8th February 2016 – my six month DVT review. Another set of ultrasounds. Again, confirmation of the DVT and indication of no change.

The sleep pattern would occur each night. I would fall asleep, only to wake an hour later with severe leg pain. I would then get up, walk around the house often for an hour or two until the pain settled. And then back to sleep – only to be woken again an hour or so later. Rinse, repeat.

The only time I would get some quality sleep seemed to be 4am to 5am onwards.

10th February 2016 – with a worsening sleep situation – I returned to the specialist. I not wholly convinced that the DVT could be causing the nighttime pain that I was experiencing.

10th February 2016 – with the rapidly deteriorating sleep situation, now averaging just a few hours sleep a night, I was referred for an MRI scan of my leg.

It was later determined that within this scan they missed a key piece of evidence in one of the MRI “slices”.

16th June 2016 – as a family we embarked upon a three-week trip back to my home city of London. The trip was blighted by my lack of sleep. I also knew when I returned I would have to undergo an MRI guided biopsy, which I did.

25th August 2016 – with the sleep situation spiralling out of control – I was referred to another specialist. This time for a bone scan. The scan revealed nothing out of the ordinary.

11th October 2016 – I was sent for a PET PSMA scan.

12th November 2016 – following various tests indicating a significant change in the tumour, my prostate was removed by robotic prostatectomy.

The weeks that followed the prostatectomy were debilitating and painful. But could the removal of my prostate signify the end of my leg pain? Would I recover from the operation and then sleep normally again?

Alas, this wasn’t to be the case, and the leg pain continued.

I would have been to see any number of doctors and surgeons trying to explore what it might be. Everything from psychological (they suggested PTSD – post-traumatic stress disorder) to neurological referred pain, physical pain – you name it.

18th July, 2017 – following a difficult time, my wife and I separated.

The leg pain continued, and the two hours sleep a night continued. My … Continue reading