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 cyst. While currently benign, this type of cyst 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.

 

 

Falling in Love Again

Cancer makes you question everything.

You realise your days are numbered. You realise your days have always been numbered and you’ve been ignoring that universal and obvious fact for most of your life. Oh sure, at some level you’ve known you were ultimately going to die, but it always seemed like an event that was so far away it didn’t register as important.

Then cancer.

Then the possibility that death might be closer than you think.

Suddenly, your life so far gets thrown into sharp focus. What have you done with it? What can you mark up as achievements? What dreams did you realise and what got lost along the way?

Perhaps the most important question of all finally occurs to you: Is this how you want to spend the rest of your life?

Some people are transformed by cancer. They walk away from boring jobs, leave abusive or uncaring partners or abandon a life they inherited rather than created. Some finally find the courage to take big risks. That might involve jumping out of a plane or finally having an honest conversation.

There’s not much about cancer you’d call wonderful, and yet…

It is wonderful to have the opportunity to take an honest inventory of your life so far, to acknowledge the achievements and the joys, to mark the disappointments and the failures. It’s very reassuring to be in a place where we understand that our lives have been very much like every other person’s life. The colours and the flavours of our experiences are different but the ebb and flow of joy and sorrow is common to all of us.

It’s an opportunity for deep conversations about what has been and what will be and how it will all be evaluated. My husband asked me, ‘Is there anything on your bucket list?’

I’m one of those people that’s found ways to do the things that were important to me as I went along. I don’t have a burning need to hang glide (did it), or parachute (not doing it). I can look back over the last 50 years and be proud of some of my achievements and embarrassed by some of my behaviour, just like everyone else. So this was the answer to my husband’s question.

“I’d like to fall in love again.”

It was a punch to the heart. He looked away. He sighed. He curled his lips in and waited, with that look he gets when he’s about to say something difficult. Then he said this.

“I can understand that. I ………..”

He hates it when I cut him off mid sentence but I really had to.

“Oh Sweetheart! I didn’t mean with someone else! I meant I’d really like to fall in love with YOU again!”

We’ve been together a long time. Like most couples, we’d settled into a routine where our patterns were well known and predictable. We were comfortable. We were both content. But faced with the sudden possibility that I might not be around much longer I’d taken to contemplating what really mattered to me. What really matters to me is connection, intimacy and love.

Stuff is just stuff. You buy it. You enjoy it for a while. Then you have to maintain it. You give it away. You buy more stuff. It will never make you happy.

Achievement is a little more rewarding but ultimately no less fleeting. Who will remember what I did during my working life? Or the art or the writing or anything else I produced? Most of us will not have any impact beyond our circle of friends, and perhaps some of the people they know.

But love? Ah, what is there that compares to it. It’s no surprise that research into human contentment keeps turning up intimacy and connection to others as the main precursors to a good life. There’s also our personal experience. Think back to the times in your life that brought you the greatest joy and they’re probably about love.

So how to fall in love again? With the same person?

I started with a New York Times article that’s become so well known it turns up in television shows (most recently Big Bang Theory). It reported on a piece of research where strangers asked each other a series of questions and many of them fell in love. Here’s the link:

The 36 questions that make you fall in love

We spent a few evenings working through these questions. It was fun. We had some great conversations and were surprised to find that we still had so much unknown territory to explore. I think part of the reason we fall in love is that the early stages of a relationship, when we are getting to know each other, are so fascinating. We are not just fascinated by our new friend, we recognise that they find us fascinating in return. Is there anything more attractive?

I started thinking that perhaps the reason the 36 questions worked so well was less to do with the content of the questions, and more to do with the process. When you’ve been married for a while you stop being fascinated with each other. You also stop having that experience of your partner finding you fascinating. Questions that give you the opportunity to get back there could be about almost anything.

I spent some time researching similar ideas. It turns out that there are a lot of lists that people have put together. Some of them are about building greater intimacy, having better sex, building commitment, having interesting conversations or just getting through a party where you don’t know anyone. Working on the basis that the process of setting aside time to ask each other questions and to listen to the answers was more important than the actual questions, I bought a few packs of blank playing cards and copied out anything even remotely interesting.

The challenge here was not to edit too savagely. As you’ll see from the 36 questions, something surprisingly inane might lead to a really great discussion. When it comes to your partner, you don’t know what you don’t know and you shouldn’t make assumptions.

I put the cards into a little decorative box that I picked up at the discount store. It’s now part of our lives for one of us to suggest that we ‘do cards’. About once a week we’ll sit in the family room and take turns drawing a card and answering the question on it. Sometimes we’ll both answer the same question and sometimes we’ll just stick to our own card. Sometimes we’ll get through several cards and sometimes a single card will prompt and entire conversation.

The cards help us to ask each other questions that would be difficult without a third party. Drawing a card that starts, “Do you think……….” allows for an open discussion, where asking the same question directly can get caught up in assumptions, hidden subtext and anxiety. There are definitely questions in this stack that would unnerve me if my husband had asked them directly (Where is he coming from with that? What’s the point of that question? Is he trying to tell me something?) but the card makes it neutral. And either of us is allowed to decline to answer. We just put the card on the bottom of the pack and draw another one.

It’s a fun game. The result is that we’re now connecting the way we did when we were first dating. My husband continues to surprise me with his wisdom, insight, humour and kindness. The cards provide me with the joy of his undivided attention, and an opportunity to talk deeply about things that really matter to us, rather than the functional conversations we have everyday.

At one point, Graham suggested marketing the cards. Proving that most great ideas have already occurred to someone else, I found a sight called The School of Life. Guess what they sell. Yep, cards with questions on them.

The Game of Life Shop

We’re not through my home made cards yet, and we could probably work through the pack a few times and have several different conversations, but when we’ve exhausted them I’ll be buying some of these.

As a consequence of spending time together, talking about a huge range of things and sharing our feelings and opinions, we’ve found that we feel closer than ever. This has carried over into other parts of our lives. We’re enjoying each other’s company and looking for events to share together. I’m remembering what it is that made me want to marry this man.

It’s also helping me to understand that, post surgery and without breasts, my body matters less to my husband than my mind and my heart. We will both get old. I’m hoping we both get really old! Our bodies will continue to be less attractive to anyone else. This has nothing to do with our deep connection to each other. We still love to touch and hold each other. We will never stop discovering things about each other. To the rest of the world we are just ordinary people, but to each other we are fascinating.

Have I fallen in love again?

What do you think.

 

 

 

 

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.

Can We Think Ourselves Sick?

I’ve written a lot about the power of positive thinking over the last three years. Both my own experiences and all of the research I’ve seen have convinced me that my state of mind plays a major part in my health. Focusing on staying calm and happy during treatment helped me to minimise the side effects and to recover quickly.

Not that I didn’t have my moments. I’m always quick to add that. I’ve had tears and black days too. I get concerned about some people getting caught in a kind of downward spiral, where they notice that they’re not feeling happy and then get anxious about not feeling happy and then anxious about being anxious…………You get the idea.

My understanding of being positive isn’t about pretending to be happy when I’m not, or denying my very normal, very human reactions to cancer and the treatment for it. I’ve had experiences that were shocking, frightening, disgusting, saddening and frustrating. In every case I made room for whatever I was feeling. I didn’t try to push it down behind a facade of cheerfulness.

It’s interesting to me that some people divide their emotions into the ‘good’ ones and the ‘bad’ ones. I think all emotions are human, and normal, and that we should expect to experience the entire spectrum of emotions when we’re dealing with trauma. The trouble starts when we try to fight with our own emotions, particularly if we dry to drown them in alcohol, bury them with food or distract them with some other unhealthy habit.

I breathe into my emotions. I experience them as they happen. I don’t try to push them away or to wallow in them. Sometimes making room for them helps them to dissipate and sometimes they hang around for a while. It’s all good. This is life.

I think of being happy as my default setting. I am capable of feeling the whole range of human emotions, and I do, but the emotion I feel more than any other is contentment. Life is good. Being alive is good! My two main practices for achieving this are mindfulness and gratefulness.

Being mindful is really just about being in the present moment rather than worrying about the past or the future. Today has all kinds of opportunities for me to do the things I enjoy. I know my mind will drift off into ‘what if’ and ‘if only’ but I gently bring it back to what’s in front of me. Sometimes this is as simple as just looking around me, paying attention to what I can see and hear and smell and feel and taste.

Being grateful has become a habit since I started recording seven things that I’m grateful for every Sunday. It’s surprised me how much this very simple practice has shifted my thinking. I’m much more inclined to focus on what I have and to appreciate the people around me.

All of this matters because we can think ourselves sick. There’s some fascinating research into this phenomenon, known as the “nocebo” effect because it’s the opposite of the placebo effect, where we have a therapeutic response to something just because we believe we will. Here’s a couple of examples:

  • Research has found that when many people who claim to have adverse effects to gluten are given it without their knowledge they do not experience any symptoms. Their ‘intolerance’ is a consequence of the nocebo effect, where they have a reaction to gluten because the expect to have one.
  • Doctors face a dilemma when conducting drug trials. They know that if they warn patients about possible negative side effects, patients are much more likely to report experiencing those side effects. They have an ethical obligation to warn patients but also very understandable reservations about the warning being the CAUSE of the symptoms.
  • The nocebo effect is so powerful that in one study of a drug used to treat prostate cancer only 15% of patients reported erectile dysfunction if they weren’t warned it was a side effect. If they were told it might be a side effect, 40% experienced erectile dysfunction.

I find this phenomenon amazing! One of the single greatest determining factors in our medical treatment is our own expectations!

I remember commenting to one of the nurses during chemotherapy that I was one of the lucky ones. I hadn’t had any vomiting. She asked me who my oncologist was and replied when I told her, “Oh yes, most of her patients don’t have any problems.” It was over a year later that it occurred to me that everyone was essentially getting the same drugs. So why were this doctor’s patients less likely to experience nausea?

I think it’s because she told me before I started treatment NOT to expect to feel nauseated. She told me that the new drugs were much better, to forget anything I’d seen on television about cancer treatment and to let her know if I felt unwell so that they could adjust my treatment. I was confident that I wouldn’t vomit. She seemed so certain.

The nocebo effect raises some very interesting issues in a climate where doctors are terrified of being sued for malpractice and where there seems to be an insistence on warning us repeatedly of the side effects of treatment. It’s possible that the worst thing to tell a patient is that their treatment might not go well.

Whenever I’m in a medical situation and I have to hear a list of risks I remind myself that ‘might’ also means ‘might not’ and that the criteria for reporting side effects in this country mean that even if one person experiences something it gets recorded. A treatment or a medication might have been taken by thousands of people with no side effects at all but one bad reaction and now everyone needs warning.

I wonder how often the rate of bad reactions starts to increase once the warnings are given.

Of course it’s not just medical professionals we need to be careful with. There’s friends and family too. I routinely (and probably rudely) interrupt people when they try to tell me about someone dying of cancer or some treatment that’s gone horribly wrong.

My own self talk gets a regular spring clean too, because how I think and what I think is every bit as important as eating well and getting regular exercise.

We can think ourselves sick.

Or well.

I choose well.

(For another great blog post on this subject pleas see When Words Hurt by the inspirational Shannon Harvey)

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.

3 Month Checkups and the Joyful List

When you’ve had cancer you get lots of ongoing medical attention in Australia. Your various specialists take turns seeing you on a three-monthly rotation.

I’m nearing the end of a three year cycle of seeing someone every three months. I know that a lot of people stop going long before the three years is up. Here’s some of the reasons:

  • Cost; even with Medicare there’s a cost involved, typically somewhere around $60 but sometimes as much as $150 depending upon the specialist
  • Anxiety; as each of these visits approach you’re drawn back into all those unpleasant memories and anxiety levels start to climb
  • Avoidance; many people decide that they are happier not thinking about cancer and not being regularly reminded of it
  • Purpose; many people question the purpose of a visit where a doctor essentially asks you how you’re feeling and, in some cases, doesn’t even examine you; even when an examination is included the doctor is much less likely than they are to find a lump
  • Convenience; depending upon where you were treated there might be a considerable distance to travel for these appointments; this can be compounded by your doctor moving to a new location; even local appointments take up valuable time.

I suppose I’ve kept going because I’m one of those highly compliant people that keeps to rules, particularly when it comes to my health, but my most recent check up made me wonder. My original doctor had moved on and I was given the option of seeing the lead doctor at the oncology practice or driving for an hour or so to see my original doctor. I went with the lead doctor.

When I met him for the first time he explained to me that, in some sense, he had always been my doctor because this was his practice. Unnecessary. He asked me how I’d been feeling (fine) and then gave me a summary of my treatment that was incorrect. No, I didn’t have a mastectomy followed by radiation. It was clear that he hadn’t bothered to read my history before he saw me.

I took the opportunity to ask him the same question I’d ask my original radiation oncologist. Why didn’t the radiation treatment kill those remaining cells? He looked visibly uncomfortable and said something about ‘one in ten……’ and ‘best estimate of the correct dosage….’ and ‘not always effective…’. I politely suggested that perhaps this information should be available to patients before they agree to radiation treatment.

I think I was just annoyed that he hadn’t bothered to read my file.

The reality is that if I hadn’t had the radiation I would still have needed the mastectomy. Those random invasive cells had been there all along and while radiation is supposed to ‘mop up’ exactly this type of cell, in my case it didn’t. Apparently it doesn’t in about ten percent of all cases. But you can’t know going into treatment if you’re the one in ten!

If I hadn’t had radiation treatment I would always have wondered if it might have killed those cells and saved my breasts. At least this way I know that I did everything I could and lost them anyway.

I can understand why a lot of people give their three month checkups a miss.

Cancer treatment is a series of these difficult choices and I respect everyone’s right to make their own decisions about what works best for them. Some people rely upon the latest research or the science. Others go with their intuition and what just feels right.

Mostly I use the three monthly checkups to take some time out and reflect on how well I’m managing my health. There’s usually some opportunities for improvement. This time around, I decided that instead of a ‘to do’ list I would start describing things differently. I’m going to forget about a list that has undertones of harassment, and go with something more positive. Here’s my new method.

What are the elements of a joyful day?

  • A hug and ‘I love you’ when I wake up
  • Slow coffee in the sun
  • A bit of Facebook time with friends
  • At least five minutes of yoga (usually more)
  • Some time in the garden
  • Beautiful, nourishing food
  • My chores done mindfully and cheerfully
  • Cat cuddles

What are the elements of a joyful week?

  • Lots of joyful days
  • One TED talk to exercise my mind
  • Creating something; art, cheese, a new garden…..
  • One long walk, or bike ride or kayak paddle
  • One deep and meaningful conversation
  • Sex or intimacy
  • One massage
  • One great meal out
  • Some time with Mum
  • A long chat with my daughter (better yet, some time together)
  • Lots of time in the garden
  • One yoga class
  • One coffee session with friends from yoga class
  • One visit from a friend
  • One blog post
  • Two fast days
  • One good book or movie
  • The house clean from top to bottom
  • Hugs

This is so much more useful than a ‘to do’ list because it keeps me focused on the things that really matter to me. I still use a note pad on the fridge to record things I can’t get around to straight away (the exhaust fan needs carbon filters and the latch on the door needs replacing) and we also have a family calendar for upcoming appointments and events. The other pad on the fridge is a shopping list; when something gets used up the person that used it up adds it to the list. These are all good, functional things, but it’s my joyful list that’s proving to be the most useful.

I find it easy to bog down in the day-to-day. Facebook can be a great way to stay in touch and it can also be a time vampire. Cleaning is endless and it can be very easy to be distracted by it. My ‘joyful’ list calls me back to the things that really matter to me; my health, my relationships with the people I love and the creative things that I like to do.

I’m nearly at the three-year mark since diagnosis. There are days when I forget I’ve ever had cancer. I just feel like myself again. And then I remember. It’s not a bad thing because cancer has certainly made me aware of how precious time is. Not just my time. Everyone’s time.

A list of what brings me joy helps me to spend my time where it matters most to me.