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)

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Three Years But No Party Please

It’s three years today since my first ever routine mammogram with Breastscreen found four triple negative tumours in my left breast.

Three years is an important milestone for anyone that’s had triple negative breast cancer. Just about the first thing you learn about this type of cancer is that it’s rare, aggressive and more likely to kill you inside the first three years.

The good news is that once you make it to three years that risk drops. Make it to five and your risk is back to being the same as the general population. So triple negative is the worst breast cancer to have, but the best one to beat.

I’ve let friends know. I’ve put a post on Facebook reminding them that if my diagnosis three years ago prompted to get a mammogram then they’re now overdue for the next one. It might save their life. It saved mine.

Other than that it’s just a quiet, rainy day at home with my husband, listening to Idea of North CDs, watching the cats fight for warmth of the fire and eating homemade sourdough. We had a great night out last night with friends but it wasn’t about my three year ‘mammoversary’.

I’m very happy to still be alive. I’m deeply grateful to have made it to three years. But there won’t be a party.

It’s been a long journey. (Yes, I know there are those that hate referring to it as a journey but there you go.) I’ve navigated the rough bits by focusing on the present, being mindful and being grateful. I’ve had wonderful support from so many people, including some that I didn’t know until I started up this mountain. They’ve kept me going.

It’s been one foot in front of the other for so long. Some stretches have been easier going and some have been one step forward and two steps back. I just kept going.

I’ve lost friends along the way. Some were taken by death and some left of their own accord. I still kept going.

Like all great quests this one has changed me. I don’t look the same; no breasts and this amazing head of silver hair. Thinner. But the real changes are on the inside. I don’t think I’ll ever go back to taking my health or my life for granted. I think I was happier not being quite so intimate with my own mortality, but I think my life is now richer and deeper for that knowledge.

All sorts of things that I used to get wound up about just don’t bother me anymore. I take great joy in the smallest things. I have no need of overseas adventures or marvellous distractions. I am fortunate to have a partner that loves me, a daughter heading off into the world to make her own mark, a few close friends that love me the way I am, a home, a bed, a garden.

The journey has cost me. It seems my hands will not recover from the peripheral neuropathy (although they are better than they were). I still get strange gaps in my memory (but perhaps this is just age and nothing to do with chemotherapy). I will never complain about growing old. It sure beats the alternative.

The hardest challenge is to trust my recovery. I know that at three years my risk is reduced. I also know that there’s still a risk, and that there will always be the possibility that cancer is what ultimately kills me. Have I won the war or simply the battle? How to know?

I hear from friends that thought they’d beaten it only to have it come back many years later. There are no guarantees. So there’s no party tonight. Maybe I’ll feel differently on the 10th of July. That’s the official date of my original diagnosis. I guess it’s not really three years until then.

Probably not.

I think I’ll curl up on the lounge with Graham and watch a funny movie. It might be one of the children’s movies that got me through some of the roughest patches.

Mostly I have this feeling that I’ve been so focused on getting up the mountain, of putting one step in front of the other, that I’m finding the peak a bit disconcerting. There’s nothing here but vertigo, and a two year journey down the other side.

It’s also an opportunity to thank everyone that’s helped me, including all of you, the people that take the time to read my blog posts and the people that make the effort to leave comments. All of you have helped to motivate me to keep writing when I thought I’d give it up. One of the most gratifying things has been to know that sharing my journey has helped you with yours.

Surviving triple negative breast cancer is possible. I think doing it with gratitude and joy is possible. My heart felt thanks to all of you for encouraging me to stick to my values and keep moving forward.

Life goes on.

Until it doesn’t.

Every day is precious to me now and I don’t take anything for granted.

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.