Thoughts


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

 


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 wasn’t angry. I was relieved. Relieved to be able to begin the path of recovery and sleep. Relieved to start the process of healing and regaining my life.

Fixation Error. I’ll be focusing more on this in a later post.

*** Did you solve the puzzle?

97% of people fail to solve it because they fixate on one solution at the expense of other potential solutions. We tend to try to solve problems by taking steps that ensure progress towards a goal. We don’t generally take steps backwards, which is what is needed here.

To solve this puzzle we must break the links in one of the chains, costing us six cents and use these three links to join the remaining chains.


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 resolve to get the matter increased yet again.

I’d always been convinced the pain though was not in my head, not psychological, and not referred pain from somewhere else or anything else that was I was being tested and treated for. I was convinced the pain was physical and local, vascular and within the leg.

I have been given epidurals, been treated with stacks of different drugs, pain and sleep medications… I have been hypnotised, acupunctured, had sound waves fired in each ear, all forms of leg and back treatment… doctor after doctor, surgeon after surgeon, psychologist after psychologist. Theory after theory. I’ve even had specialists tell me it’s all in my head.

I went back to my doctor in February 2018 and insisted on seeing another vascular specialist. This, despite having had several diagnoses already. My doctor hesitantly sent me to another specialist.

27th February 2018 – I had my appointment, and this particular doctor had his own ultrasound machine on site, and he scanned my leg. Within minutes he told me that he thought I had been misdiagnosed. He didn’t think it was a DVT. He said we would need to MRI it, but it looks like a tumour.

1st March 2018 – The MRI that night confirmed it, it was a tumour deep in my thigh. The size of a large walnut/golf ball.

When I look back – and I look through my seemingly endless pile of DVT scans, it seems inconceivable that this hadn’t been picked up by one of the scanners, or one of the doctors.

To cap it all, in one of the MRI reports, it was found that the operator and specialist missed a crucial clue – in one of the slices of the MRI scan, the tumour was visible.

I was referred to a new set of doctors / surgeons and sent for a biopsy.

This confirmed the tumour.

27th March 2018 – I started six weeks of radiation therapy.

Almost immediately my leg pain subsided and I started sleeping through the night for the first time in a long time. It was absolute bliss!

5th June 2018 – Surgery time. Two surgeons got to work on me and opened up my thighs. One surgeon worked on my left thigh, carefully removing a superficial vein for use in my right thigh. The other surgeon got to work on my right thigh, removing the tumour which was pressed up against my arterial vein which needed to be rewired with the vein from my left. A nerve also had to be removed.

The tumour was removed with clear margins.

And following that, there was lots of physio trying to get my leg back into shape.

As a consequence of the operations, I have some lymphedema in my leg so I am undergoing compression treatment to deal with that. And with the nerve removed, I have lost sensation in half of my lower right leg.

But, I am alive, sleeping well, relieved, and feeling positive.

This is a summary, and I’ll go into more detail about each aspect of my journey, in the hope that if someone out there is searching for answers and not finding them, then maybe, just maybe, my posts here might assist in getting them on the right track.

Question everything. Go with your gut. Get answers. Don’t give up.


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.