Getting doctors to take us seriously

I woke up this morning to news that a friend is in hospital with a burst appendix. This should not have happened.

She developed the characteristic pain associated with appendicitis last week and saw an after hours doctor. She was referred to a hospital for assessment where she was examined by another doctor who decided she didn’t need further treatment. She was not offered either ultrasound or a CT scans. She was sent home.

Her doctor accepted the word of the hospital doctor and continued to work with my friend to determine what was going on. There were tests. There was pain medication and ultimately a burst appendix. All this in spite of my friend repeatedly reporting acute abdominal pain.

I can’t help wondering if women reporting pain are treated differently to men reporting pain. This is not my only recent experience of this apparent bias.

My daughter has an unfortunate history of not being taken seriously by doctors, particularly with regard to pain. As her mother, I know that she is inclined to actually be rather stoic when it comes to pain. She does not exaggerate and she’s likely to wait a while before she resorts to pain medication. I know that if she says she is in pain she means it.

And yet, time and again she has had doctors dismiss her with a shrug of their shoulders and a suggestion that she should ‘just keep an eye on it’. This week she will have surgery on her finger. It has been causing problems for a couple of years now. It is always tender and if she bumps it against anything she experiences strong, stabbing pain on the underside of the nail bed. She has repeatedly told various doctors about the problem.

Finally my daughter encountered a freshly minted doctor, filling in at the practice she regularly attends. The locum was interested enough to send her for an MRI. What it revealed was a tumour. While currently likely to be benign, this type of tumour does have the potential to become cancerous. It needs to be removed.

My daughter is understandably angry. She’s not only had years of pain in the hand, she’s had it while working through a university degree and having to type on a daily basis. She’s had it in spite of several reports to doctors who seem to have just assumed she was over stating her pain, or displaying some kind of hypochondria.

Not only that, but this is just the most recent in a series of similar events where it has taken her two, three or four visits to different doctors before she finally finds someone prepared to take her seriously. In every single case there was a serious underlying medical condition that required treatment.

How does this happen? Are doctors’ surgeries so filled with over-reporting, attention-seeking women that the rest of us get tarred with the same brush?

My daughter wonders if she would have received better treatment if she had been a man, particularly a large, football-playing man. I think she would have. I think a doctor would have assumed that any man attending the surgery and reporting acute pain in his finger had something worthy of further investigation.

If you are a doctor and you are reading this then I would like to offer this piece of advice. Please do not assume. Your opinions about female patients might have some basis in fact and I allow for that. It could be that women actually are more inclined to exaggerate their symptoms or to seek medical attention when some over the counter pain relief and a bit of rest are all that is needed. Personally, I doubt this. It is inconsistent with my own experience but my personal experience is limited and perhaps you know better.

Still, here’s the thing, even if some women (or even most women) are inclined to this type of behaviour, many of us are not. Many of us are the type of people that wait to see a doctor and possibly wait a bit too long. When we arrive at your surgery seeking your help we’ve already given time and Panadol a go. We have already been ‘keeping an eye on it’ and that is why we are now seeking your help.

You might also like to keep in mind that we have a naturally higher pain threshold than men. There’s good science on this. So when we report pain it is likely to be more serious, not less.

I think it’s just possible that there is a long history of characterising women unfairly. We used to be treated for ‘hysteria’, a mysterious condition thought to be caused by our womb roaming our body and creating mood swings. In recent years the assumption that our menstrual cycle will result in strange and irrational behaviour every month has become so widely accepted that it now gets used as a criminal defence. The truth is that most of us manage to live our lives without turning into raging lunatics once a month.

Menopause is characterised by some as an onset of permanent mood swings that are as suddenly changeable as New Zealand weather patterns. Which is odd, given that I now keep company with a circle of post menopausal friends who clearly manage entire days, weeks and months of sensible behaviour.

Enough.

Women are not over emotional. We are not, by nature, moody, unreasonable, attention-seeking drama queens. Most of us are just like men in this regard; capable of experiencing the full spectrum of human emotions and expressing them in appropriate ways. The exceptions are just that. Getting doctors to understand this is not just about better bedside manner. It is about saving lives.

My daughter’s cyst could have become a tumour. My friends appendix has burst and she is now dealing with the risk of long term health consequences because of it. Head to any cancer forum and you will read story after story of women that were told a lump was nothing to worry about only to discover it was a tumour. We’re not making this stuff up!

As patients I think we also need to be aware that this bias exists. I wish it was as easy as saying to a doctor, ‘Do you think you might take me more seriously if I was a man with these symptoms?’ I am known to be what my husband politely refers to a a ‘forthright’ but even I would find this kind of comment too confrontational. There are gentler ways to achieve the same outcome.

Perhaps it would be a good idea if we enter a doctor’s surgery with a clear idea of what we want and refuse to leave until we get it. Being able to ask for a scan or some other form of diagnostic test can be difficult. We want to trust our medical professionals. We feel rude challenging their diagnosis.

I have found that it can be useful to frame this kind of request as a need for reassurance. This doesn’t challenge your doctor’s expertise. It can also be useful to ask your doctor to consider alternatives. Yes, a second opinion is an option but it is also both time consuming and expensive, and there is no guarantee that you’ll be treated any better by another doctor.

So here, in the interests of better health care, are my suggestions for questions to ask your doctor when you feel like you’re getting the ‘silly woman’ treatment:

I have been worried about this and I would really feel a lot better if I could have an x-ray (ultrasound, bone scan, blood test etc).

I know you don’t recommend having any kind of testing for this but I’d like one anyway.

May I please have a referral for an ultrasound? And if your doctor replies that they do not think you need one: I appreciate that but I would like one anyway.

What should I do if I still have the same symptoms in a couple of days? (Next week? Next month?)

What else might be causing this? 

None of these questions are rude or discourteous in any way. You’re just asking for what you want. Of course asking for what you want can feel like hard work in an environment where you know you might be dismissed as over reacting, simply because of your gender.

Which is precisely why I think we should all get a lot better at doing it.

 

 

Book Reviews!

There’s something mildly terrifying about writing a book.

In the writing phase I was consumed with craft and content. I wanted it to be simple, but not too simple. Useful and not overwhelming. Helpful and not exhausting.

After completing the first draft I put it aside for several weeks, came back to it and was shocked by how much repetition and useless waffle it contained. I edited fiercely.

A couple of people read through the draft for me, including one very generous friend whose a professional writer. The feedback was good. It was time to publish. No reason not to just jump right in and do it. And yet it felt terrifying! It suddenly occurred to me that I was putting myself out there, open to whatever criticism people decided to hurl at me. I metaphorically chewed my nails as I waited for the book reviews to arrive.

First came the friends. How I love my friends! A couple of them found the time to post their comments on the Amazon site. Here’s what they said:

A very valuable resource for everyone, not only those that have had cancer. There is so much knowledge and information within this book for tools with working through freeing yourself from fear. I believe sometimes when we get caught in fear, there is fog, we don’t seem to acknowledge our own values and get lost in the mist. There is so much within this book that draws on many techniques for working through this and with a lovely sense of humour, it shows Meg McGowan has had the life experience to walk the talk. Thank you Meg McGowan.

And this:

If I could pay $5 to avert one hour of meaningless fear, would I spend it? “Of course!” I thought, and bought this book.
It turned out to be full of practical ideas that I can use straight away on myself and the fearful ones around me…thats everyone alive.
Holding hands with the fear-monster is a sweet image, and does it work?
Well, I tested it.
After reading the book I did a suitable amount of scary-monster hand-holding, then went though a list of scary phone calls, scary conversations, procrastinated tasks.
I’m unharmed, and the quality of my future is now better. You don’t need a life-threatening illness for this book to protect and nourish you.
As a bonus, dandelions will forever look more beautiful, after reading this book.

When I checked today I found two reviews from people I don’t know. How exciting! Here’s what they’ve said:

If a cancer diagnosis feels like too much to bear, you’ll find solid comfort here. The exercises are quick and easy to perform. Yet they are profound and will produce lasting results. McGowan’s book is filled with wisdom that can only have come from one intimately familiar with the traumatizing effects of cancer diagnosis and treatment. I strongly urge you to buy this book. You’ll be glad you did and will, like me, refer to it for years to come. This book is a rare find, and the author deserves praise.

And this:

This book ticks all the boxes for handling the fear of recurrence that is part of all cancer patients’ lives after diagnosis.
It is written clearly and cuts through all the fog that surrounds us when we feel overwhelmed.
As a breast cancer survivor, I think Free from Fear should be on everyone’s Important Items list.
It is an exceptional read from someone who has been there, and understands.

Over on the Breast Cancer Network Australia site I’m also getting some really great feedback. Time to exhale.

You see, the thing is, even if I now get negative responses, or even if I never sell another copy of the book, it’s all been worth it.

Maybe I should write another one 😀

Here’s the Australian link (Kindle only)
Free From Fear on Amazon.au

Here’s the US site where you can also get the paperback.
Free From Fear on Amazon

There’s a promotion coming up on the 19th of June when the Kindle version will be available for free for three days. I’m celebrating four years since that visit to Breastscreen found three triple negative tumours, so it seemed like a good way to celebrate.

Thanks so much to everyone for all of your support. I couldn’t have done it without you. ❤

A Day of Rest

I might be about to officially enter the ranks of ‘old person’. I’m going to write about something we used to do when I was young that doesn’t happen anymore. ‘In my day…..’

Please don’t misunderstand me. I’m generally not sentimental about the past. I think our species has come a long way in the last fifty or so years. We are, on the whole, less violent, more tolerant and more interested in family and community than we are in power or the accumulation of personal possessions.

But I miss Sundays.

When I was a kid the shops were closed on Sunday. Saturday was the day you went shopping. If you were fortunate enough to live in a country town you also spent a lot of time saying hello to other people, stopping for a polite chat with those that weren’t close friends, but were part of your community. A lot of people also relegated time on Saturdays to cleaning the house or mowing the lawn.

Sundays were for resting.

For those that were members of a church or other religious congregation, Sundays were a day of gathering and worship. For everyone else there were the secular traditions; a Sunday roast with immediate or extended family, a walk or a nap after lunch, a quiet corner with a good book and an early night so we were all well rested for the week to come.

I wonder to what extent the chronic stress, anxiety and depression that now plagues us can be traced to the introduction of Sunday trading. You can now shop seven days a week. Thanks to online shopping, you can now shop 24 hours a day.

Marketing has always played with human psychology. It’s designed to make us want what we didn’t know we wanted. Its primary weapons are greed and anxiety. It seeks to convince us that more stuff will make us happier, more attractive, more successful. Even though we know in our hearts that this is untrue, we buy anyway.

This week three things bubbled to the surface of my world. The first was a piece about two studies into human behaviour that have been running for around 70 years. They’ve been tracking participants since they were kids at college in the USA. They can now tell us what it is that leads to people declaring their lives successful and happy. It’s connection to other people. Imagine! Not wealth or power or fame. It’s all about the quality of your relationships with others.

The next bubble was an article about resilience. Researchers are recommending that all the techniques for dealing with trauma and stress are of little benefit to us if we don’t take time to rest and recharge. It’s the quality of our time out that makes the difference.

How interesting that both pieces of research seem to be stating the glaringly obvious.

The final bubble in this week’s mix was a tiny purple flower that appeared on Facebook. It allowed us to express our gratitude. In addition to indicating that we liked or loved something, or were amused, amazed or angered by it, we could show our gratitude. A few days after it was introduced it was gone. There’s a petition to bring it back. I loved it. So did a lot of other people.

The research into expressing gratitude shows us that doing it regularly is good for us. It helps us to be happier with what we have. It pushes back against the marketing onslaught and allows us to look around our existing environment and appreciate that, for most of us, we already have enough. Gratitude also reminds us that the things that matter most to us are our relationships with other people, the opportunities we have to connect with nature and fun we have when we take time out from work.

I wonder if there’s a group of highly paid psychologists somewhere, recommending the Facebook owners avoid anything that encourages people to express gratitude. It can’t be good for business. If we are focusing on what we have and the importance of relationships and experiences over things, we are surely much less likely to want to spend money on things we didn’t need in the first place. We might even decide to spend less time on Facebook.

For my part, I’m signing the petition to bring back the grateful flower, I’m continuing to limit Facebook to no more than an hour in the morning and I’m spending time each Sunday recording seven things I’m grateful for.

I’m also reinstating a commitment to Sunday as a day of rest. That might mean lunch on the verandah with good friends or just going for a relaxing walk with my husband. There will definitely be more reading and the occasional trip to the movies. I also want to spend more time sitting in the garden and just enjoying it, rather than planting, weeding and mulching. It’s not that I don’t enjoy the gardening. It’s that I want to stop and appreciate the outcome.

I hope this week you’ll find some time to rest and recover. Maybe it’s time to reflect on your achievements or the quality of your close relationships. Maybe it’s escaping into a book or a movie. Whatever you decide to do, know that you’re doing your mind, your body and your spirit a favour. Rest is undervalued. I think it’s time we turned that around.

Do we get what we expect?

I’m in the void between writing and publishing; that place where you send your baby book out to a few trusted people for what you hope are some minor corrections and constructive feedback.

And then you wait.

Early indications are that it’s readable and useful. I’m still on track to publish either late April or early March. I still don’t have a name I like. I started with ‘What if the Cancer Comes Back?’ but figured most people wouldn’t want to buy it. I moved on to ‘Worried Sick by Cancer’. Same problem. I really want a title that’s focused on what the book will help you to achieve, rather than the problem it’s trying to address.

Having said that, popular wisdom is that it needs the word ‘cancer’ in the title. Something to do with algorithms and search engines and online potential. I really like ‘Fear + Less’.
It’s a book about fearing less. But is this too obscure? And it doesn’t contain the word ‘cancer’. All thoughts and suggestions are welcome.

In the meantime, I’m contemplating the extent to which we get what we expect. I had coffee with a friend that hasn’t been to yoga for a few months. She hurt her foot and ended up in one of those ski boot looking things that they use instead of a cast. She was telling me that when it came off, her whole leg was wasted and that she’s still regaining strength.

Then she said this: “It will never be the same. I’m always going to walk with a limp.”

Hold on a minute. You’ve only had the boot off for a couple of weeks and you’ve already decided that you’ve got a permanent disability. When I asked her why she thought this she replied that her doctor had delivered this miserable diagnosis and that it reflected her own fears, so she saw no reason to reject it.

I reminded her that post-mastectomy I was told I’d be likely to experience some permanent restriction to my range of movement. It was likely that taking two F cup breasts from my body, and the subsequent scars running under my arms, would mean that my arms just wouldn’t be able to do what I was used to them doing. A combination of scar tissue and nerve damage would see to that.

When I put my hands above my head I still need to slightly adjust my left hand to bring it to the same height as my right. That’s it. Oh, I sometimes have some tightness to the left side if I twist. I can also put my hands into a reasonable ‘reverse prayer’ (put your hands into prayer position and now see if you can do the same thing behind your back), and a couple of weeks ago I held something called ‘crow pose’ for a good five seconds.

Crow pose involves crouching forward with your hands on the ground, putting your knees on the backs of your upper arms and then lifting your feet. Google for impressive pictures. Essentially, I can support my entire body weight on my upper arms.

I’m a 55 year old woman whose had a bilateral mastectomy.

I’m also close to four years since my diagnosis and a few months further away from three since my surgery. Recovery did not happen quickly. I still have some issues with my hands and my feet thanks to the nerve damage from chemotherapy and I also get annoying pain across various parts of my chest on a regular basis. It turns out that this is common post-mastectomy. I don’t accept that either condition is permanent.

I think of all the various aches and pains I’ve had during treatment, and all the way back throughout my life. What an amazing capacity our bodies have to heal. I also recognise that some recovery takes much longer. I think we have a mindset that a few weeks is a reasonable healing time because that’s about how long it takes for a cut to heal.

Here’s the thing. Skin heals quickly. It has to. It’s the outside, protective coating for our bodies. Other things heal more slowly.

I was told by my oncologist that whatever nerve damage I had at the end of twelve months was probably my ground zero. Things weren’t going to get any better. Then the radiation oncologist told me that nerves can take up to eight years to regrow. Eight years! So let’s wait until then before writing off my healing capability. Certainly things have improved slowly but if I’d accepted the first diagnosis I’d be focusing on the pain and discomfort and not bothering with physiotherapy to improve my condition.

I’ve recently read about some interesting research into chronic pain. People that experience it have a different kind of brain. Researchers can put 100 people through an MRI and detect which ones experience chronic pain by looking at the architecture of their brain. Here’s what’s really interesting; they can also predict which people will develop chronic pain using the same techniques.

It turns out that to some extent, pain really is all in our minds! At least, it’s more likely in those of us with a particular kind of mind.

This is huge. About one in five people report either chronic or sever pain. It’s the reason pharmaceutical companies invest so much money in pain relief. It also explains why so many of these medications affect brain chemistry.

This might sound like your propensity to experience chronic pain is just some kind of genetic lottery, but it’s more complex than that. A whole range of things directly impact the way our brain functions. It’s no surprise that chronic stress can cause exactly the kind of changes that result in chronic pain. People with higher levels of anxiety or depression are also at risk. Some recreational drugs, including alcohol, are also linked to the same kinds of changes in the brain that result in chronic pain.

So what about the brains of people that are less prone? Of course those with a calm disposition, and good techniques for coping with anxiety and stress do well. (Don’t ever let anyone try to tell you that there’s a human being on the planet that never experiences anxiety, stress, grief or anger.)

The robust mind might also belong to someone that used to be prone to chronic pain. These people have usually altered the way they live their lives to reduce stress and anxiety. They probably practice meditation regularly and may also use yoga, tai chi, qigong or some other form of calming exercise routine. Track these people over time and their MRI’s will show physical changes to their brains. They don’t cope with a pain-prone brain by soothing it, they actually change the architecture of their brains to something less likely to experience chronic pain.

Of course, what this means is that even my ‘permanent chronic pain’ diagnosis is now up for argument. It’s just possible that with yoga and meditation I can overcome pain. It’s certainly highly likely that I can reduce it.

I noticed a few months back when a visitor complained of a headache that our medicine chest was full of pain relief medication. I had stocked up on it, having been told I’d probably be taking it for the rest of my life. I couldn’t be sure about the last time I took anything but it was certainly months ago. I didn’t decide not to take the pills, or to endure serious pain. My pain just hadn’t been strong enough for me to want a pill.

There are still times when I consider medication, and still very rare times when I take something, but that’s a long way from six tablets a day. I think my progress is due, to a very large extent, to my daily yoga and meditation.

I also think that part of it is due to my expectation that we can always improve our health. There’s no upper limit to how well we can be. Ultimately, a doctor’s diagnosis is just an educated guess, an opinion based on what they thing other patients in similar circumstances have experienced.

Personally, I’d like to see doctors trained to talk about possibilities rather than absolutes. This isn’t about putting a shine on a bad situation. It’s about being accurate. I’d like to hear them use language like this:

Based on what we know about your condition there’s a possibility that you may have permanent pain or physical restriction and there’s also a possibility that you may not. The body has an amazing capacity for healing and it can sometimes take years before it’s finished the job of recovery. There’s a lot you can do to improve your health and there’s no upper limit to how well you can be.

I suppose we’re still years away from meditation being recommended, in spite of the overwhelming research that proves it’s more beneficial and more effective than any pharmaceutical your doctor can prescribe. Ideally, I’d like to see practices that included a psychologist to teach people the techniques they need to live a fulfilling life. I’m sure that would have more impact on public health than all the pills in the world.

Regardless of where you are with your own recovery, please know that nobody has the right to steal your hope. Doctors that make proclamations about your limits are sharing their opinions, and while they are very well informed opinions they are not a sentence. When it comes to recovery it’s best to keep an open mind. We may be capable of more than we think. Certainly we will never get more than we expect.

A bit of a book

Hi everyone,
As most of you know, I’m busy working on a book about dealing with fear of recurrence. It’s a huge problem for most people that have survived cancer and the one I get asked about the most.

I’m still playing around with what to call it but at this stage the working title is ‘Worried Sick by Cancer’. I thought you might like a bit of a sample from the opening chapters, so here’s a taster:

The downward spiral of distraction

Just about everything I’ve read about dealing with fear of recurrence recommends distraction as a strategy. We’re told to go for a walk, watch a movie, play with the dog or bury our attention in a new hobby.

Some people distract themselves with healthy activities and others use food or drugs or risk taking to try and conquer their fears. Distraction is a ‘flight’ response to our fear.

All forms of distraction will work some of the time and there are some particular types of distraction that are really useful (more on that later) but for the most part, distraction isn’t a reliable response to fear.

Let’s go through this step-by-step.

You’re facing the fear that your cancer will come back and so you try to distract yourself. You go for a walk, watch some television, maybe phone a friend. If you’re like most people the fear comes with you.

You find yourself experiencing a cycle; a little bit of distraction followed by a little bit of fear. You notice the distraction isn’t working. This makes you even more anxious. You don’t want to be fearful and now you’re anxious about being fearful.

You stick with distraction and perhaps even change activities in the hope of stopping yourself from being frightened. It doesn’t work. Or it works just a little bit and then it doesn’t work. Pushing your fear away is like trying to hold it at arms length. It takes strength and effort and it makes your arm tired.

Sooner or later you need to stop trying to push that fear away and then it’s right back in your face again. So you have another go at trying to push the fear away. This is a bit like trying to hold it above your head or behind your back but you know you’re still going to get tired. You’re aware of the tension in your body as you try not to feel your fear.

Now you notice that the activity you’re using to distract yourself is not a source of pleasure. Using it as a distraction has sucked the joy from it. It’s as if you’re doing it with one hand while you use the other hand to push away the fear. You can’t give the activity in front of you your full attention because you need to make sure you keep that fear at arms length.

You notice that even though you’re trying really hard to distract yourself, the fear keeps creeping back into everything you do. Sometimes you get short bursts of time when you stop thinking about the fear, and then you notice you’re not thinking about the fear, which makes you think about the fear again.

You’re frustrated. You’re anxious about being frustrated and fearful about being anxious. The thought occurs to you that feeling this way isn’t good for your health and now you’re really upset! What if the fear of cancer is actually contributing to the risk of cancer!

At this point your fear might escalate, or it might shift into one of the many emotions that grow out of fear. These include the evil twins, worry and anxiety. Both recruit the phrase ‘what if’ to amplify your fear. You might also find yourself feeling angry, frustrated or annoyed. These emotions are a reaction to feeling out of control and fear is their foundation.

Does any of this sound familiar?

Most of us find distraction somewhat useful some of the time. You might be one of those lucky people that can just switch off, but for most of us, distraction is not an effective way to respond to fear.

Distraction is a bit like trying to pat your head and rub your belly at the same time. With practice, you can do it, but it’s not going to become easy or fun. You might develop some pride in your ability to do two things at once. That’s understandable. But you’re still caught in a slow, downward spiral.

Here’s why I think distraction doesn’t work for most people; Remember what I said about your mind trying to keep you safe? Distraction means you’re not listening. Your mind is sending you an important message about staying alive and you’re ignoring it. What does your mind do? It gets louder!

It’s possible that some of our ancestors never felt fear but they almost certainly got killed and eaten. The nervous and frightened ancestors had much better survival odds. We’ve evolved to feel fear and to pay attention to it. When we try to use distraction to avoid our fear it’s only reasonable that our very clever brain will keep ramping up the fear factor to get out attention. After all, it’s the reason our ancestors survived.

The most important thing to remember about your fear that the cancer will come back is this; your fears are not irrational.

You’ve had one of the biggest frights of your life. It was not imaginary. It was real. You’ve had several more frights along the way, probably involving test results, medical procedures and even the unexpected reactions of people. You have had a really, really big fright!

Your highly evolved brain wants to stop you from ever being that frightened again. It wants to make sure you never put your precious life in that much danger again. You’ve correctly identified a major risk to your survival and your mind wants you to pay attention.

Instead of helping you to deal with your fear of recurrence, distraction does exactly what it has always done. It momentarily takes your mind off something. But your mind doesn’t want to forget about cancer. Your mind wants to warn you. So eventually that fear is back up in your face.

Many people describe this as feeling like they are stuck. They get periods of time when things seem almost back to normal and then the fear sneaks up on them, or ambushes them when they’re not expecting it. The methods I’m going to teach you will help you to overcome this pattern.

For some, fear becomes a downward spiral. Each time they experience fear and an inability to cope with it, they repeat a pattern of behaviour. It might be that they reach for drugs or alcohol, experience a panic attack or find themselves feeling tearful or angry. Each experience of fear sends them back around in a circle.

Their mind establishes a kind of neural loop, and this pattern becomes a well-worn track. They now have a one-track mind when it comes to responding to fear and that track leads them to an increasingly frightening place. If this is you, I can show you how to fix this.

Please take some time to think about the extent to which you’ve used distraction to deal with your fears. How has that worked for you? Is it a reliable way to deal with worry or do you find yourself cycling back through fear again?

There’s nothing wrong with using distraction if you’ve found it effective. It’s just that most people don’t. I’ll teach you a better way of dealing with your fears so that you can return to the activities you enjoy for their own sake, and not as an escape for your mind’s legitimate concerns for your safety.

* * * *

(c)2017
M J McGowan

 

Three Years Today!

It’s official.

Three years ago today my husband and I sat in a small office at Breast Screen with a doctor we’d never met and a counsellor I’d seen twice before to receive the news that I had triple negative breast cancer.

I was pretty sure before the appointment that I was going to receive a cancer diagnosis. I’d seen the three (later four) suspicious cloudy blobs on the ultrasound and read the concerned face of the doctor taking the multiple biopsies.

I’d cautiously and reluctantly read up on breast cancer but I’d never heard of triple negative breast cancer. I thought they’d tell me there was no urgency and that I had several weeks to think about what I wanted to do next. Instead the doctor asked if I had my usual doctor’s phone number on me so that I could get a referral to a surgeon as soon as possible.

“The cancer you have is much more aggressive than most breast cancers. You need to regard treatment as somewhat urgent. I wouldn’t leave it more than two weeks.”

My father died of bladder cancer at 58. I used to imagine how odd it was going to be to reach 58 and realise I was now the age that Dad was when he died. Suddenly 58 felt like a worthy goal rather than a curious milestone. I was convinced that I was going to die.

I wandered my garden sobbing. Not since my Dad’s death had anything been so upsetting. This was a kind of personal death. No more dancing through life as if it was going to stretch on and on for decades. No grandchildren. Perhaps not even being here for my daughter’s marriage. All of the joys of my future, suddenly squashed under the weight of a cancer diagnosis.

In a cruel twist of timing, my daughter was in China at the time, holidaying with her Dad and his partner and the love of her life. We had already had days of painful discussion about whether or not to let her know that there concerns about my Breast Screen results or whether to wait until she came home.

On the one hand, we didn’t want to spoil her holiday but with social media we knew that keeping it a secret was going to be impossible. My close friends were supporting me through the weeks of anxiety. (I still wonder why I didn’t just see my doctor and have the biopsy done privately! I would have had the results in days and not weeks. Shock.) Zoe was bound to pick up on the fact that something was wrong and to be very angry about not hearing the news before everyone else.

So I made the hardest phone call of my life.

With the experience of a police officer whose given death messages I told her plainly and quickly. There’s no point drawing this kind of conversation out. It just builds anxiety. Of course she wanted to get on a plane and of course I convinced her there was nothing she could do here. But how I wanted to hold her.

The next day she posted to Facebook: “I know I should say something deep and profound here but all I can think of is ‘fuck cancer’.”

It was a gift. I’d dug my own grave and was stretched out in the bottom of it. I was convinced that my father’s DNA, the stress of my previous occupation and the usual collection of unhealthy habits had collided.I was going to die. And then with one angry sentence my daughter turned me around.

I climbed out of the hole and decided to fight. I decided to do everything I possibly could to beat cancer and to stay well. I spent hours on the internet researching triple negative breast cancer. I read books about cancer treatment and dealing with chronic illness. I started this blog. I hoped that writing about treatment would help me to stay on track (it did) and that perhaps sharing my experiences would benefit other women (it has).

It can be difficult to find information about triple negative breast cancer that isn’t terrifying, so I also started a Facebook page and started sharing information about current research, along with small chunks of inspirational thinking that helped me to avoid falling into hopelessness.

Back then I compared fighting cancer to climbing a mountain. I’ve got a better analogy. Cancer is like suddenly discovering that the path you’ve been walking on is unstable. It collapses beneath you and you slide, quickly and dangerously, down to the bottom of a deep, dark pit. On the way down you get injured. The extent to which you get injured is partly determined by how you handle the fall. The rest is luck.

When you get to the bottom you have to make a decision: Stay and die or try to climb back out again. You know the climb will be long and difficult. You know there’s a risk you could back-slide, or wind up right back where you started. You don’t know whether to go back the way you came (because at least you know the risks) or to try climbing out using a different path. So many choices and none of them are clearly better.

As you climb you find there are other people on the same journey. Some of them shout out advice to you but you don’t know if their progress is any better than yours. Some of them fall past you and you never see them again. Some days you feel like you’ve made great progress and other days you slide back towards the pit, terrified that the slide will go all the way to the bottom again.

Your medical team fly in from time to time and drop supplies. Sometimes these make the climb easier and sometimes the weight of them makes you want to sit on the side of the slope and cry.

Way up ahead, towards the light, you can see researchers building bridges and stairs. If only you can stay climbing long enough to reach them.

More people slide past you on their way back down. You want to call out encouragement to them. You want to tell them not to give up and to climb and to keep climbing, but part of you knows that everyone has to make their own decision. There are no right answers.

Finally the edge of the cliff seems within reach, but you’re so tired. This is when a lot of people give up. You know that. It looked closer than it really is. It seemed within a days reach but that was weeks ago. The people that love you are up there in the light, calling down to you. They’ve been there the whole time. Even when you couldn’t hear them. So you keep going.

One day at a time.

Just keep going.

And then the ground starts to become less steep and your progress feels more certain. There are days when you can actually start to enjoy the scenery. Recovery seems possible, even likely, but you can’t trust it. You keep going.

I don’t know when I made it over the edge of that cliff. Was it today? Was it a few months ago when my doctor ordered my three year scans early and I got the news I was cancer free? I don’t know. I feel as if I’m out of the pit now and back on solid ground. Life gets back to being about gardens and friends and good food and laughter. We talk about cancer as if it’s history.

But here’s the truth.

Once you’ve had that path drop out from under you it’s unlikely you’ll ever trust solid ground. It seemed safe the first time around, just before you fell into the pit. You know now what other people don’t; the path can always drop away at any time. This was always the truth. Maybe this is what they mean by ‘ignorance is bliss’. We would all prefer not to know this.

And so we all make a decision. Do we stay frozen by fear or set out on the path again?

Slowly, slowly I have crept forward over the last year, testing the ground beneath my feet. Eventually I decided I will never be able to trust it. I also decided that it’s okay. Not trusting it has made me exquisitely aware of the beauty in the every day.

I sit here typing, sharing my thoughts with people I will never meet, watching the sun warm up the winter garden. There’s a heavy dew this morning and the light is refracting. When my daughter was tiny we would watch the rainbow sparkles and call them fairies.

Today has music and ageing cats and Graham’s sourdough. Today has laundry to fold and firewood and theme music. Later, we’ll head out to lunch with my very adult daughter and her lovely partner to celebrate his birthday. We’ll catch up with his lovely parents and eat great food and laugh.

Life goes on.

 

I am grateful for still being alive.

I am grateful for all of the people that helped me get here.

Thank you.

All of you.

Whether you’re someone on my medical team that provided primary care, one of the many amazing nurses that supported me or one of the cheerful receptionist that greeted me (never doubt the difference you make).

I am grateful to all of the people that contributed to my care and recovery; to the woman at the wig library, to the staff at the local restaurant (Reef) that cheered me on, to the stranger in the waiting room that said “You look great today!” when I had no hair, to the young woman behind the Coles checkout that cried and hugged me. To everyone that smiled and didn’t look away. Thank you.

Thanks to all my virtual friends, whether through this blog or Facebook or the BCNA site. Your support and humour has often been a candle in the night.

To all of my real world friends, old and new, that hugged me and held my hand and drove me to treatment and took me walking and fed me and loved me. I am truly blessed to have you all in my life. And to those that stepped back or moved away, I wish you every happiness and please know I understand.

Special thanks to my yoga teacher, Emma, and my massage therapist, Maryanne. You have both made significant contributions to my physical and emotional recovery.

To Mum, for being stronger than I knew you were and for stubbornly refusing to accept the possibility of my death. I love you.

To Zoe, for telling cancer where to go and for being my single greatest reason for living. For continuing to study hard and live well when you had every reason to fall in a heap. Mummy’s better now, Sweetheart. I love you more than all the leaves on all the trees.

And finally to Graham. I don’t know how I would have coped if this had been you and not me but I couldn’t have done it better.

For starting all of this with “You are not your breasts and nothing is more important to me than keeping you alive and if you have to lose them then that’s what we have to do.” For being the only person that could make me laugh when I’d given up on laughing. For helping me to really understand why a good marriage is so much better than being alone.

Most of all for this:

The night before my double mastectomy, when I asked you if you wanted to kiss my breast goodbye, you said, “No. I’m over them. They tried to kill you.”

And the next day when they took the binder off to check my wounds and I had horrible tubes sticking out of me with bags attached to collect the fluid and even the thought of it all made me gag, you didn’t leave the room and you didn’t flinch.

You’ve never flinched. You’ve grieved and you’ve worried for me but you’ve never looked at me as if I was damaged. I’m just Meg to you. I love you. I didn’t think I could love you more than I did when all this started. I was wrong.

I was going to use today to wrap this blog up and say goodbye. I thought it might be time to move on, but I’ve realised that owning the whole experience and integrating it is part of my recovery. It’s healthy to keep hold of the whole experience and to move forward informed by it. Life can be better after cancer.

On to the next thing.

Love to all.

I am deeply and humbly grateful. Thank you.

Meg

How to Change Your Mind

There was another shooting this week.

This one was in the USA so it got lots of news coverage here. It could have been anywhere. All over the planet there are similar examples of violence and hatred. It feels like a vicious circle; a shooting happens and the response is anger and hatred, and the anger and hatred build and bounce until someone else snaps and the whole cycle starts again.

What to do.

If you’re a caring, compassionate person events like this one can leave you feeling hopeless. What’s to become of our species?

It’s an acute form of the same kind of distress we experience when we’re confronted with selfish, greedy people that don’t care about the planet or the other animals we share it with, or selfish, greedy people that don’t care about other people.

What to do?

I see friends responding with anger towards these types of events. There are cynical posts on Facebook, heart-felt expletives, conversations through teeth ground down by years of frustration.

And then an afternoon spent looking for something entirely different leads me to the work of Tania Singer. I was concerned about the way world events can be deeply distressing to highly empathic people. As an ex-police officer with a history of PTSD I now avoid the news. It’s just too upsetting. There’s so much research about how easy it is for us to ‘catch’ the emotional distress of others. So when I caught sight of this article in an issue of New Scientist I was drawn to it:

How Sharing Other People’s Feelings Can Make You Sick : New Scientist 2016

You’ll need to pay to read the whole article but if you’re the kind of person that’s deeply affected by distressing events I recommend it. Does this resonate with you:

Overdosing on the misfortunes of others is not just a problem for those in high-exposure professions such as nursing. All of us are vulnerable to catching the pain of others, making us angrier, unhappier, and possibly even sicker.

What was really interesting to me about this article was that the research done by Singer and her colleagues provides some great strategies for combating this distress. Teaching people how to meditate on loving kindness, and how to become better at observing their emotional responses to different situations can have a protective and healing impact.

Impressively, these processes can actually change your brain. Singer demonstrates using MRI’s how their program altered the neural activity in their research participants. She and her team have also demonstrated that these changes do more than just improve individual wellbeing; they also change the way we treat each other.

In tests that examine economic modelling and how people behave, Singer’s team established that meditation and other cognitive awareness practices shifted people’s behaviour from selfish to generous, from individualistic to cooperative.

If you’d like to learn more then here’s the link:
Tania Singer: How to Train Your Mind and Your Heart

This work relevant to anyone interested in social change and the evolution of our species beyond our current state. Compassion and extending loving kindness can change our brains and lead us to behave in more compassionate ways.

All those from religious traditions that believe meditation can change humanity are, in fact, correct.

The flip side of this is that a world filled with hate, cynicism and negativity has the potential to hard wire us for competition, greed and cynicism. When we give in to anger we’re doing to opposite of meditating on loving kindness and our brains (and lives) will suffer as a result.

I was on a course recently with a wonderful group of people that genuinely care about humanity and the planet. Even given this strong, positive bias I was surprised by the level of anger and negativity in some people. ‘The one percent’ came in for a lot of hatred, as did individuals seen as belonging to it. There was even some conflict within the group as some people decided who they did and didn’t connect with. Even here, there were the seeds of weeds that become violence.

Is it really as simple as loving everyone? Even the greedy and the violent, even the destructive and the selfish? And is that even possible?

There are reasons to practice meditation in any case. Evidence suggests it can protect your brain from the effects of ageing, provide you with a calmer, happier life and help you to overcome depression and anxiety. There are lots of free meditations available on the internet if you’d like to give it a try, or just do this:

  1. Find a comfortable, quiet place to sit. Hold your body in a neutral position – not too relaxed or too stiff. You want to be comfortable but you want to avoid falling asleep.
  2. You don’t have to close your eyes but many people find it helpful.
  3. Listen. What can you hear. Spend a few moments paying attention to the world around you.
  4. Now focus on your body and how it feels. Feel where it’s in contact with the chair. Feel your clothing against your skin.
  5. Shift your focus to your breathing. Notice that it’s cooler breathing in and warmer breathing out.
  6. Your mind will drift. This is normal. Be relaxed about it. Imagine that your mind is the sky and the thoughts that try to pull you away are like birds that fly across the sky. You can notice the bird and let it fly past. Bring your attention gently back to the sky.
  7. Now cultivate a feeling of loving kindness. Think of someone you love (If you struggle to think of a person then try a loved pet) and feel the emotion build up inside you. Imagine this feeling is like the sun, shining in the sky.
  8. Extend a feeling of loving kindness out into the world. Start with yourself. Bathe yourself in loving kindness. Then extend it to your close friends and family. Wish the very best for them; their health, their happiness and that they should also achieve peaceful and compassionate minds.
  9. Now extend loving kindness beyond the people that you know to the people that you don’t know. Remember this feeling is sunshine and it doesn’t discriminate; just like the sun it shines on everyone. If you struggle to shine loving kindness on some people, imagine them as small children or babies. Cultivate loving kindness towards all humanity.
  10. Now extend loving kindness to all life on earth. To trees and animals and microscopic life. To fungus and whales and chickens and lizards. Everything that lives can experience your loving sunshine.
  11. As you do this, your thoughts will continue to drift. This is normal. Just gently bring them back. You might like to imagine that your loving kindness is a river flowing out into the world and your distracting thoughts are like leaves on top of that water. Just let them float by.

You only need to set aside five or ten minutes a day to do this. After a while it becomes like cleaning your teeth. It’s just part of your routine. There are other ‘mindfulness’ practices like yoga and tai chi that will also help you to develop your meditation skill, but remember that it’s specifically a meditation on loving kindness and the practice of extending compassion to others that will have measurable benefits for you.

From personal experience, this practice has been extremely beneficial in helping me to live with post traumatic stress disorder. Part of my policing career involved child protection work, so you can imagine the challenges I face when it comes to extending loving kindness to all human beings.

But I do. Even to the offenders I’ve arrested. They were once children too.

Perhaps my greatest challenge has been to move beyond the anger and hatred that I used to feel for these people. They are not monsters, and treating them as monsters is only feeding the creature. I sometimes laugh at the realisation that The Beatles knew the answer and I’ve been hearing it all my life; Love really IS all you need.

I’m not saying it’s easy to avoid being pulled back into old patterns. When a shooting happens or I hear that the Great Barrier Reef is dying or I read that a politician has acted in a greedy, selfish way it’s simpler to just get angry and to launch into a rant. And then I remember that hate makes me part of the problem.

I sometimes wonder why adults that would not allow their children to bully other children with name-calling are perfectly okay with doing exactly the same thing to other adults via social media. Does calling Donald Trump a dickhead really make a difference? Or does it feed into the dynamic that allows him to exist at all.

One of the most common despairs of anyone passionate about the planet and the people on it is this: How do we change the minds of the destructive and selfish? It turns out that the answer was in our question the whole time: by changing their minds. Perhaps we need to focus on finding ways to engage these people in compassionate meditation. The research suggests it could shift their behaviour.

In the mean time, we can be the change we want in the world and work on refraining from the kind of behaviour that will make our brains like their brains. Could it be that simple? Maybe the next time you’re tempted to share an insulting thought or denigrate a public figure, pause and give thought to what you’re cultivating.

What’s most interesting to me about all of this new research is the extent to which it validates some very old philosophy. Buddhists have been teaching compassionate meditation for generations. The minds of Buddhist monks look very different under MRI analysis. They have changed their minds.

When events like mass shootings happen I am now able to avoid the anger and depression, not least of all because I recognise that these emotions feed the creature. Change is possible. We have the means for our own evolution. Spread the word.