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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Play

I usually start the new year with a very clear idea of what my theme is going to be. I wrote about this back at the beginning of January. Usually it comes to me as an obvious choice; last year it was ‘health’. A bit of a no-brainer really.

This year I was throwing around ideas about learning, creativity, listening, paying more attention to the people I love…….and while all of these seemed like good ideas, nothing really jumped out at me. When this sort of situation emerges, as it does from time to time, I think it’s best to trust the process and wait. Yes, it can feel a bit drifty for a while but then, as surely as the sun appears to rise, I move towards the place I need to be and it’s suddenly there on the horizon.

This week a woman I admire but do not know well sent me this video. She’s an amazing artist and was advertising workshops for the coming year. She attached this half hour piece by John Cleese on creativity:

Creativity; making the time and space for it.

If you have the time to watch it I highly recommend it. If not, here’s the short summary. Creativity happens when we make space for it and when we recognise that it’s a particular mode. We have our day to day mode of operating in the real world but to be creative we need to shift into a mode where we are free to explore the new and the unusual. Cleese suggests that it’s worth timetabling this, actually setting aside a half hour or an hour just to see what emerges.

Importantly he recommends play as the great generator of creativity. The solemn and the serious are the enemies of creativity. Play frees us of our usual constraining thought patterns and allows the new and unusual to emerge.

It’s also just fun.

This was the word I’d been looking for: Play.

I’m going to spend more time this year being playful. I’m going to approach everyday things with a sense of play. I’m going to laugh more and play with the people I love for the joy of it, without expectation or purpose, just for the fun of it.

Already I’m noticing the difference this single word can make to my day. I was heading out to have lunch with a friend on Monday and before I left the house I reminded myself: Play. My friend is always wonderful company but I suspect I was better company for being so light hearted.

I’m inclined to be serious, judgemental, argumentative and stern. It’s almost certainly a hangover from my policing career. I’m likely to be the wet blanket that worries about personal injury or gives you unsolicited advice about leaching chemicals in plastics or oxalic acid in kale. It’s not a lot of fun. It doesn’t make me fun to be around.

This year will be about shifting that default setting. I’ve had a couple of years of some very stern and serious stuff. I need a break and so does everyone close to me. Actually, I need a permanent shift towards playfulness.

I sometimes wonder if the great joy experienced by new grandparents is partly to do with the fact that babies give you permission to play again. We can make silly noises, pull funny faces and roll about on the floor. Why should we need babies to give ourselves permission to do that?

I’ve always balked at those memes that advocate never growing up. To my mind, being a grown up is just about taking responsibility for the consequences of your actions. It doesn’t mean you can’t be joyful or silly or playful. I sometimes wonder if what the authors of these memes are really saying is that we all need a bit more play in our lives. We shouldn’t see it as childish or immature (or perhaps we shouldn’t see ‘childish’ as insulting!). We should consider it one of the great joys of life.

When I watch dolphins leaping for the sheer joy of it, or dogs playing tag with each other, or cats wrestling but not hurting each other it occurs to me that play is natural, normal and probably essential.

John Cleese suggests that humour and play are the space that make creativity possible. We don’t latch on to the first solution we think of. We don’t rely upon the best known way. Play throws up unusual combinations and possibilities. It relieves us of the everyday pressures of life and makes space for something new.

I think it’s great advice when approaching any kind of creative pursuit. I like to paint and I know my painting improves when I just let it happen and don’t think about it too much. Start getting too analytical and it all falls apart. I’m going to try intentional playfulness with anything creative to see what happens.

I also think that play is worthwhile for its own sake. We should set aside some time to be joyful just to be joyful. If we solve world hunger or invent a better mousetrap in the process then that’s an wonderful product of our play, but I don’t think it should be our goal. Play for the fun of it. Approach ordinary activities with a sense of play. Set aside time to play with people you care about.

That’s what I’ll be doing this year.

 

Lists of things not to say to cancer patients and why to ignore them

Get well soon card

Yesterday this article appeared on my Facebook wall:

http://www.mindbodygreen.com/0-11076/5-things-you-should-never-say-to-people-with-cancer.html

It’s another list of things you apparently should never say to someone with cancer. It seemed to me like a pretty negative article for a site that’s usually accused of being all rainbows and unicorns.

I was going to comment, suggesting that the author was still angry about her treatment and might like to give it some time before she offers advice. Cancer is hard. Anger is inevitable. I was a bit shocked by some of the comments on the article, and on the Facebook post. This poor woman got slammed.

Every so often someone suggests to me that I could attract more readers by promoting my blog, rather than just letting it grow quietly in this hidden corner of the garden. It’s even been suggested by close friends that I start a Youtube channel and upload videos of myself giving advice. When you see the comments on an article like this one you’ll understand why I don’t. There are some nasty people out there.

Perhaps the article should be called “5 things you should never say to me if I have cancer”. The first mistake this author made was assuming to speak for all of us.

I once wrote something similar about what I did or didn’t want people to say to me. Regular followers of this blog will remember it. By the time I’d had recurrence and more surgery I was just grateful for the friends that stuck by me. They could say whatever they wanted to me!

I think one of the reasons that some people leave our lives is that they’ve become so anxious about saying the wrong thing. Articles like this one don’t help. So let me apologise for my previous advice about what not to say and replace it with the following.

THINGS IT MIGHT BE GOOD TO SAY TO SOMEONE WITH CANCER:

1. How are you feeling today?

This is preferable to a general ‘How are you?’ because it’s specific to the present and allows you to then offer help if needed.

2. What can I do to help?

Or just find something to do to help. I had two friends turn up and weed the garden. Other people dropped off frozen meals or drove me to treatment. It was all appreciated.

3. I don’t know what to say.

Just say it. Be honest. Be authentic. You’ll probably get a response like “Yeah, I know. Me neither.” and then you can have a conversation about something else.

4. What would you like to talk about?

Sometimes the answer will be ‘cancer’ and sometimes the answer will be ‘anything but cancer’ but people will appreciate you asking.

5. Would you like a cuddle?

We’re not contagious or toxic and affection can be wonderful for helping to cope with pain – just not if you’ve got a cold or flu because catching a cold can kill someone on chemo.

6. Please let me know if you want me to go. I won’t be offended.

Sometimes treatment is exhausting and we find company tiring.

7. You look great!

I think the protocol for this one is simple. If I’ve clearly gone to some effort with my appearance then tell me how great I look. That was the whole point of making all that effort. If I’m just hanging around the house in my track suit then probably best not to comment.

8. I love you.

This never gets old. And you don’t want to regret not saying it.

Most importantly, don’t abandon us if you can possibly avoid it. Some people are going to. They’ll find it too difficult or confronting. They’ll find it brings up memories of someone they loved that died of cancer. They’ll want to protect themselves from the possibility of having to weep at our funerals and comfort our loved ones so they’ll suddenly or gradually distance themselves.

Please know that it’s your friendship that matters, and our friendship for you includes always remembering that people sometimes make mistakes, and sometimes say things that might upset us, but if we remember their love for us it really doesn’t matter.

Friendship also means you might need to remember  that cancer will make us sad and angry and oversensitive and sometimes hard to be around. We might take offence at the smallest thing. It’s really our problem and not yours. Just hang in there and say whatever you like.

By all means say, “I understand that you’re upset but it’s not okay to talk to me like that.” Cancer does not give us licence to behave badly. It just gives you a reason to forgive us when we do.

Most of all, ignore the lists of things to say and things not to say. Some people hate any comment on their appearance, some people don’t want to be asked about help, some people might be angry that you don’t know what to say. Some won’t. We’re all individuals. Nobody speaks for all of us. That’s why my list includes the word ‘might’.

At some point there are no ‘wrong’ things to say to us. We’re just so happy that you’re still in our lives.

Fear of Recurrence: Part 4 (Mindfulness)

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I sometimes wonder if the people that developed Acceptance Commitment Therapy (ACT) based their model on Buddhist or yogic philosophy. There’s some striking similarities. One of the most obvious is the use of mindfulness as a technique.

It seems that mindfulness, all on its own, is enjoying a popularity surge at the moment. It’s the subject of books, TED talks and articles. Most people are at least passingly familiar with the idea of being present, paying attention to what’s right in front of you, or around you, rather than the chatter that’s going on in your mind.

When you’re dealing with the fear of a serious illness returning, mindfulness brings you from your fears about the future all the way back to the present. It reconnects you with the activities you enjoy and the people that you care about. In the context of ACT, it helps you to turn your attention to your values, and to take action consistent with those values.

Russ Harris explains that when you’re dealing with a distressing event (or you’re upsetting yourself by imagining one) mindfulness is not a relaxation technique but a way to anchor yourself.

Here’s a simple mindfulness exercise. As you’re reading this, pay attention to the device that’s displaying it. Look at the different textures on the surfaces of that device. Are they reflective or dull? What colour? What brand? Are you holding the device in your hand and, if so, what does it feel like? Or if it’s on a surface in front of you, what is that surface. What is it made from? Now look around the device. What can you see? What can you hear? What can you smell?

If you’re similar to me then mindfulness exercises feel like moving out of your head and back into your body. I have a mild sense of waking up or reconnecting with my world. Please don’t misunderstand me. There’s nothing wrong with using imagination to create dreams, explore ideas, imagine possibilities. The aim is not to be mindful all of the time, but to spend more time being mindful.

One of the easiest ways to do this is to focus on your own breathing. Try this now and then use it the next time you start scaring yourself with thoughts of illness or death. Put one hand on your chest and the other on your belly. Take five gently breaths and focus on your exhale being longer than your inhale. (This also helps to prevent you hyperventilating. Suck in too much oxygen and you definitely will not feel calmer.) Breathe through your nose if you can. Notice how your breath feels cooler going in and warmer going out. Try to breathe all the way down to the hand on your belly. Notice the way your hands rise and fall with your breath. Hold yourself gently and kindly.

As you do this, remember that you’re not trying to get rid of your anxiety. You’re just trying to anchor yourself during a storm. Those difficult thoughts and feelings will keep trying to frighten you. Notice them. Thank your mind for trying to warn you and protect you. Recognise what a great story teller you are.

Now shift your focus to your five senses. What can you taste? Many people experience a metallic taste when they’re stressed. What can you hear? You might not be able to hear anything other than your own heart or breathing or you might be able to hear music, or birds, or traffic. Just notice it without judgement. What can you smell? What can you feel? It might be just the air on your skin or the places where your body comes into contact with your chair and your clothing or you might notice the air temperature or a breeze. Finally, what can you see? Look around you and notice the detail. Where are you?

I think that part of the reason yoga and meditation are so good for reducing anxiety is that they both incorporate mindfulness. It’s a powerful way to put ourselves back into the present moment. When applied to ACT, mindfulness also allows us to think about what it is that we really value, and what type of action would make our lives more meaningful. Nobody expects you to come up with strategic plans while you’re frantic about the future but mindfulness can give you, quite literally, the breathing space you need.

Once you’ve weathered the storm you can revisit your values and put together plans to achieve things that are consistent with them. You’ll probably keep having scary thoughts. Cancer is terrifying! But these techniques will help you to have a rewarding and meaningful life in spite of your fears.

I don’t plan on writing a post about how to make plans and carry them out. I think most people are now very familiar with the SMART model and ACT incorporates it as part of the ‘Commitment’ part of the acronym. Here’s a link to the Wikipedia entry if you’re not already using SMART or you can google ‘SMART planning model’ for more information:

http://en.wikipedia.org/wiki/SMART_criteria

There’s whole books written on this model and there’s no doubt that people using it are generally far more likely to achieve their goals than those that don’t but this is not universally true. Not everyone needs or wants a structured planning model and critics would argue that being too structured can blind you to the surprises and opportunities that life puts in front of us. I suppose the acid test is how effective you already are at setting and achieving goals. If you feel like you’re going around and around in circles then I’d recommend going through the SMART process, writing things down and then checking in regularly to measure your success. Like so much of life, the key is to actually DO rather than just understand.

Even if you think you’re pretty good at achieving your goals I’d encourage you to give the SMART model a try. You might find that it helps you to take effective action and to achieve more than you already do. I used to use SMART in a work setting and find that after years of use I now naturally slip into this framework when I want to achieve something. Revisiting it from the perspective of ACT has made me keen to try using it for something other than work. I’ve always been a lot more ‘free form’ in my personal life, perhaps because work was so structured.

This is the end of my four part series on dealing with fear of recurrence and I hope you’ve found it useful. ACT is a collection of interrelated tools that have been proven to be very effective in dealing with everything from PTSD to giving up addictions. For me, learning about this model and putting these methods into practice has resulted in a significant improvement in my life. I am calmer, happier and clearer about what I want my life to stand for. Even though ACT practitioners are very clear that the model is not designed to reduce or eliminate troubling thoughts, I have, like many people, noticed a reduction in them as a side benefit of practicing these techniques. I’ve also found that Russ’s book for couples ‘ACT with Love’, has strengthened my marriage and increased my considerable love and affection for my husband.

If you’ve read about ACT and thought it was too simple, or too difficult or just not you then I’d encourage you to at least try some of the techniques. It’s possible that you’re right. It’s also possible that you just might expand your skills and improve your life. Surely that’s worth a bit of your time.

Here once again is the link to Russ’s web site.

http://www.actmindfully.com.au

I would highly recommend his book ‘The Reality Gap’ to anyone facing a cancer diagnosis or dealing with significant anxiety about anything. Just remember that reading the book and expecting your life to change is like reading a cook book and expecting to eat. ACT only works if you do it. Yes, some of it will feel awkward and strange and even a bit stupid but that’s how you’re always going to feel any time you’re brave enough to try something new.

As I write all of this I’m thinking about 2015. It’s the first day of that year. I love the new year. For me it’s always a time of reflection and gratitude. It’s also when I decide on what I’m carrying forward and what I’m leaving behind. I spent this morning reducing my Facebook ‘friends’ list down to those people that I actually spend real time with and those that I would spend real time with if they lived closer. Gone are the friends of friends, the occasional acquaintances and the people I never really knew at all. ‘Unliked’ are all those pages that push stuff into my timeline and eat up the first couple of hours of my day. This is all part of a desire to spend less time online and more time leading my new, improved and very valued life.

Cancer has made one thing very clear. My time on earth is limited. The most important question I can ask myself is ‘How do you want to spend that time?’ For me, this year will involve more yoga, more painting, more cello, more gardening and, most importantly, more face to face time with the people that I love. I’ll be spending less time ‘liking’ or ‘commenting’ on the posts of people that probably wouldn’t invite me to a party if they threw one. Facebook is a wonderful tool for communicating with lots of people but it has become a time vampire. I suspect I may have become just a little bit addicted to it. Time to get back to life. Nothing takes you away from mindfulness as quickly as Facebook.

I wish I had never had cancer but I am very grateful for the person I’ve become because of it. Thank you to all of you that have shared the roller coaster with me. Thank you for your time, your comments, your kindness and your advice. My plan is to live until I’m 86 and to never ever have cancer ever ever ever again. Wish me luck.

 

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Fear of Recurrence: Part 2

It looks like I don’t need more chemotherapy (yay!). I haven’t actually heard back from my oncologist but I’m going to assume that means everything is fine. So it looks like I’m at the end of my treatment and now I need to adjust to what all the books, brochures and cancer support groups refer to as ‘my new normal’. I sometimes wonder if this is code for ‘you will never be as well as you were before cancer.’ I hope not.

Thanks to those that wrote with feedback after last week. It seems that fear of recurrence is an issue that affects just about everyone whose had cancer. Someone pointed out it’s also a huge issue for partners and children. So far, the best model I’ve found for dealing with it is Acceptance Commitment Therapy (or ACT) and this week I thought I’d write about the ‘acceptance’ part of that equation.

I think it might be helpful to start with how ACT is different to traditional Cognitive Behavioural Therapy (CBT) with apologies for all the acronyms but when you’ve got peripheral neuropathy you’ll take all the typing shortcuts you can!

During my time as a police officer I developed post traumatic stress disorder (PTSD) as so many do. The ‘gold standard’ in treatment for this condition has been CBT. This style of therapy gets you to notice your thinking, to identify ‘negative’ or ‘unhelpful’ or ‘dysfunctional’ thought patterns and to rewrite them. It describes a range of these ‘dysfunctional’ thinking styles, including black and white thinking, catastrophising, overgeneralisation and so on. These are called ‘automatic negative thoughts’. If you’d like to see a good list, here’s a link:

http://www.thehappinessinstitute.com/freeproducts/docs/Examples%20Of%20Unhelpful%20Thinking.pdf

Because it’s my nature to never do anything by halves, I read everything I could get my hands on about CBT. I journalled my ‘negative thoughts’ and rewrote them. There’s no question that it helped me cope with the PTSD.

Notice I said ‘cope’. CBT isn’t a cure. It’s hard work and you never stop having to do it. Here’s an example of CBT in action:

When my daughter was born I was hyper vigilant about her safety. Because of my time in child protection her birth triggered terrifying nightmares that involved her mutilation and death. During waking hours I found it physically painful to be apart from her. My automatic negative thought was that without my protection she would be kidnapped and killed. I dealt with this by writing it down and then collecting evidence. I would reassure myself that she was just as safe with my husband or my parents. I would review the crime statistics on kidnapping to remind myself that it is a thankfully rare occurrence. I would rewrite my automatic negative thought as “I recognise that when I am away from my baby I am anxious about her safety, even when she is safe. This is a consequence of my past work experience and not a rational assessment of risk.”

This helped. I would calm down. I would have my Mum or my husband take my baby out of line of sight for a while and then bring her back, safe and sound, just to retrain my subconscious into reasonable parental anxiety rather than irrational panic.

Acceptance Commitment Therapy is probably the latest evolution of Cognitive Behavioural Therapy but here’s the biggest difference. With ACT you don’t regard your thoughts as ‘negative’ and you don’t rewrite them. You just accept them. Russ Harris uses the analogy of holding a ball under water to illustrate the effort we use to control our thoughts. With effort, you can keep that ball down but the minute you become distracted, or need your hands for something else, that ball is going to pop right back up again. The essence of the ‘acceptance’ part of ACT is to let go of the ball.

Our mind has evolved to be a wonderful early warning system. It has had to be in order for our ancestors to survive. It’s the reason why the shadows of leaves at night can make us think of spiders or a sudden drop in temperature can put us on alert. But our thoughts are just a story. They have only as much power as we give them.

If I had been able to practice ACT when Zoe was a baby then this is how things would have been different; I would have felt anxious about her safety. I would have recognised that my brain was telling me the ‘scary baby safety story’ and I would have thanked my brain for trying to help me take care of my daughter. I would have made room for the thought by breathing into it and imagining it was a single cloud in a world where all of my thoughts were clouds and I was the sky. The clouds come and go. The sky remains.

Then I would have asked myself, ‘Is this thought useful? Does it help me to lead a fulfilling life consistent with my values?’ I value loving parenting so this thought is not without some benefit if it reminds me to consider my daughter’s safety, but when it escalates to the point where I am now too anxious and distressed to be an effective parent it has become counterproductive. Like a cloud that casts a momentary shadow, I can observe it and let it float on by.

Can you feel the difference in these two approaches? One feels stressful and requires constant vigilance and effort. The other is the opposite.

When I first read The Happiness Trap and learnt about ACT I was skeptical. I has spent many (many!) years practicing CBT and I’d become pretty good at it. I was reluctant to abandon something that had worked well for me for so long. But what if Russ was right? What if instead of fighting with my thoughts I could just accept them and breathe into them, and then turn my attention to something more important?

One of the characteristics of PTSD is the recurrence of distressing thoughts. Some people call this ‘the waking nightmare’. You’ll be happily going about your day and then suddenly something distressing and horrible from your past will jump feet first into your day and splatter mud over everything. It’s awful. It’s particularly awful if you’ve worked in emergency services or spent time in a war zone. I promise not to describe any of my child protection horrors. Please don’t try to imagine them. I resolved that the next time I had a flashback I’d apply ACT techniques, just to see if they worked for me. Here’s what happened.

I was suddenly confronted by an awful visual memory from a case I had worked on. I sat down and planted my feet on the floor to ground myself. I noticed the sights, sounds and smells around me as a way of bringing myself back into the present and back into the room. I put one hand on my chest and one on my belly and I held myself lightly, imagining the same tenderness I would feel for my baby daughter. Then I imagined that the horrible memory was just a bit of video on a TV screen. I imagined myself pausing it, rewinding it, playing with the brightness and the picture quality. I recognised that it was just a memory that my mind had stored to keep me safe. I thanked my mind. I thought about my values and what’s important to me now. I chose something to do that was consistent with my values.

Then I sat in amazement for about ten minutes. I felt like crying from sheer relief. Years of arguing with myself, of regarding my brain as damaged and broken, of grinding my teeth and clenching my hands and hating how I was feeling…….gone.

My mind is not broken. It’s normal. It’s doing a great job of trying to keep me safe.

I recently caught a bit of a webinar on dealing with fear of cancer recurrence. Most of the strategies amounted to something I think of as ‘constructive distraction’. They included practicing mindfulness, meditation, yoga and other forms or exercise or doing and enjoyable activity.

Distraction is probably the first strategy we learn to control our emotions. All dedicated parents learn to pick up the signs of an impending tantrum or an emotional event and offer all kinds of alternatives. If we’re lucky our parents taught us constructive distraction techniques like engaging in an activity we enjoy or taking a walk. If we’re unlucky then we developed destructive distractions like drinking alcohol, taking recreational drugs, over eating or self harm. The thing about distractions is that even the constructive ones are still a different activity if you’re doing them to avoid a negative thought.

You might remember that last week I used the example of gardening as something that I do to distract myself from fear of recurrence. Before I read about ACT I would hurl myself at the garden and exhaust myself in an effort to drive any thought of a painful death from my mind. After learning to apply ACT I breathe into the fear, I make room for it, I thank my mind for trying to take care of me, I recognise the thought as a completely normal and natural reaction to a life threatening illness. I practice mindfulness and then take action consistent with my values, which often includes heading out into the garden.

In both cases I’m in the garden, but the way I feel about what I am doing is completely different.

You’ll notice that I haven’t tried to get rid of the thought. It’s true, that one of the side effects of this method can be that the thought moves on, but that’s not the aim. Sometimes my fear of recurrence hovers about for a while. That’s fine too. I can accept this thought for what it is.

Here’s a great exercise to demonstrate the difference between control strategies and ACT. I’d encourage you to actually do this exercise because ACT is about doing, not about reading, and you’ll get a deeper understanding of what I’m on about.

Take a piece of paper and write down all of the things that are frightening you. Put some detail into it. The horrors that rise up at three in the morning. The ideas that keep you from falling asleep. You can use words or pictures.

Now hold that piece of paper in both hands and bring it right up close to your face so you can’t see anything else. Notice how it blocks out all of the wonderful things that are in your life. All of the friends and family and love and joy. Fear of recurrence can overwhelm us like this. (Okay, if you’re just reading this then go back now and write some stuff on a piece of paper. I promise this is a quick exercise.)

Now hold that piece of paper out at arms length. Try to push it away from yourself with all your might. Notice how much effort this takes. Your arms are tired. You can’t use your hands for anything else. Trying to deal with fear of recurrence using control strategies feels like this. SO much effort.

Now fold up the piece of paper and put it in your pocket or your bag. This is ACT. You can carry those thought around with you without them ruling your life.

Does that help to explain it? I hope so. I know some of you will want to rip up the paper or scrunch it into a tiny ball and throw it away. If someone comes up with a technique that actually lets us do that with troubling thoughts I’ll be there. In the mean time I accept that all of the emotions I feel, all of the thoughts I have, are part of being human. I don’t need to retrain my mind to be permanently optimistic (and I’m certain this is impossible). I can accept that my brain is doing the best job it possibly can to keep me well. It’s default setting is ‘Fear is a wonderful motivator!’

If you’d like to read more about ACT then here’s Russ’s web site:

http://www.actmindfully.com.au/about_russ_harris

His book ‘The Reality Slap’ is specifically written for people dealing with trauma, like a cancer diagnosis, and I highly recommend it. I hope you can understand why.

Next week I’ll write some more about fear of recurrence, how to identify your values and how doing so can help you to live a rich, fulfilling and meaningful life, even after a cancer diagnosis.

A Matter of Trust

I’ve been thinking a lot about trust lately. It keeps turning up in conversations. Just a few days ago a friend and I sat on the front verandah and talked about infidelity, and how the real issue is the betrayal of trust.

At the time of my retirement I was the Commander of the NSW Police Fraud Squad. When I took the job on, fraud wasn’t considered a particularly serious crime because the impact on victims compared to crimes of violence was considered negligible. Over time I observed that, in fact, the impact was more severe than many people realised.

When you’re a victim of fraud you’ve been tricked into parting with your money. Really effective fraud offenders will build a relationship with you in order to get access to your money. What I found interesting talking to victims was that the monetary loss was not the worst part of this crime. It was the loss of trust.

When you’ve been betrayed you question your own judgement. You beat yourself up for trusting someone. You retrospectively see all of the signs that something was wrong or you observe that there were no warning signs at all and this makes your mistrust a slow moving cancer that infects all of your relationships.

A friend asked me a couple of months ago for my opinion on her husband. Did I think he was having an affair. How can you ever answer this question? Apart from saying ‘Not with me!’ I had no immediate answer for her. What if I defended him and she later discovered he was having an affair? What if I shared her concerns and unfairly condemned him? I’d been in a similar position myself, a long time ago, when I suspected that a person I was in a relationship with was secretly drinking, even though he’d promised not to. Ultimately I discovered that the depth of his deception went way beyond just breaking that promise. I ended the relationship because I came to understand that if I didn’t trust him I couldn’t possibly say that I loved him. I believe that trust is an essential part of love. I also recognised that real love is unconditional. If you don’t love someone exactly the way they are, if you have a list of changes you want them to make, and if your love is conditional upon those changes then you do not really love that person. You love some mythical version of them that you’ve created in your head.

Lately it’s occurred to me that one of the biggest hurdles for me right now is trust. I’m not worried about my husband. He’s the man that managed to win my trust in spite of the disastrous betrayal of that past relationship. He’s one of the most honest people I know. My trust issues are with my own body.

At the time of my initial diagnosis I would have told you that I was healthier than I’d ever been. I was completely convinced of the physical and emotional benefits of yoga and had started practicing at home every morning. I was eating a largely organic, whole food diet. I was, for the most part, a moderate drinker with occasional over-indulgence at social events, but I hadn’t had a hang over in more than a decade. (This was before I knew that alcohol was a group one carcinogen and as bad for me as cigarettes!) I didn’t take any illegal drugs and was conscious of the need to lose about ten kilos while being frustrated that anything I’d tried so far to actually lose that weight didn’t seem to work. Compared to my friends, I was at least as healthy as most of them and healthier than some of them.

Mentally and emotionally I was in the best place I had ever been. My relationship with my husband was strong and supportive. Like all couples we were not without room for improvement but it was more of a slow refining over time. My daughter had made it through her teenage years with a surprising absence of drama, drugs, alcohol or racing around in cars. We had started to work on our relationship as mutually respectful adults. I loved my home and my life. Things were good.

I got cancer anyway.

It’s part of the reason I get so annoyed at alternative treatment posts that want me to search inside myself for the emotional causes of my cancer. Try as I might I’m unable to locate any ‘repressed anger’ or ’emotional retardation’. I was practicing mindfulness and meditation. I was at peace with my self and in love with my life. I was doing all of the things you would normally recommend to someone seeking to improve their physical, emotional or mental health.

I got cancer anyway.

If you’ve been following this blog since the beginning, you’ll know that I met my diagnosis head on. I embraced the power of positive thinking and creative visualisation. I fine tuned my diet and increased my meditation. My daily yoga became as important to me as my daily shower. The days I least felt like yoga were the days I most needed yoga. I cut my drinking right back to the very occasional glass of wine in a restaurant. I probably drank a total of three bottles of wine in twelve months. I added turmeric and lots more leafy greens and cannabis oil and garlic and turkey tail mushrooms and flax seed to my diet. I made sure that all of the meat I consumed was organic and grass fed.

The cancer came back anyway.

I don’t regret my commitment to positive thinking. It’s made treatment more bearable and it’s made me more pleasant to be around. It’s ensured that through all of the treatment there has still been joy and humour and affection and love. My life has not been ‘on hold’ while I fight cancer. Life is far too precious to put on hold. My life has had to incorporate chemotherapy and radiation and surgery and surgery and surgery. I’ve lived through the fatigue and the hair loss and the bloating and the sometimes overwhelming fear of my early death. I have stayed positive.

The cancer came back anyway.

I’ve tried to emphasise along the way that I don’t think staying positive means excluding all of my other very human emotions. It’s about finding joy where there is legitimate joy and being grateful for what is really there. It’s the sweetness of small moments. My husband’s hand on my bald head, my daughter’s sobbing embrace, my friend’s thoughtful words, the kindness of strangers, all of it wonderful.

I realise that my body and I now have serious trust issues. How could I have been so sick when I seemed so well? When I was initially diagnosed I was pretty healthy. When my recurrence was diagnosed there was general consensus that I’d never looked better. Even then I had lingering doubts about being in the eye of a storm.

Now that I’m out the other side of treatment I need to learn to trust again. My body is slowly recovering. In just the last few days I’ve felt my energy starting to return. I’ve cut right back on any medication. The side effects of the prescribed drugs for nerve pain were worse than the nerve pain. The other pain relievers only have limited impact on my other pain, which could be arthritis or fibromyalgia or bone pain from chemotherapy. I’ve started magnesium supplements and that seems to have helped. Mostly I’m relying upon massage, hot showers and yoga to stay mobile and flexible. Some times I take a couple of panadol but it really only takes the edge off the pain.

My husband jokes that cancer has finally taught me that I am not indestructible. This is true. It’s a good thing to come to terms with. I am kinder to my body and much better at resting when I need to. As a naturally busy person this has taken time.

I suspect that we all float through life with a sense of indestructibility until life serves up something life-threatening. Suddenly we come face to face with our own mortality. Life is finite. We will all die.

This realisation is both terrifying and wonderful. The unimportant slips away. Decisions about what is really important become simple. I know that for some people a cancer diagnosis triggers major life changes as they realise there are aspects of their current situation that don’t fit with who they want to be and what they want to achieve. If you’re lucky, a cancer diagnosis makes you take a long, slow look at your life and allows you to come away with a sense of satisfaction. I am lucky. I have spent large chunks of my life mindfully creating something that brings me joy, pride and deep satisfaction. I appreciate it more because of my new understanding of its fragility.

I miss feeling indestructible. I miss that unshakable trust I had in my own body. I felt as if I was going to live forever.

I wonder if it’s possible to rebuild that trust now that I know the truth.

It’s a bit like people that have been victims of fraud. For a while, they find it difficult to trust anyone. Ultimately, those that recover make a decision to trust in spite of the betrayal.

I think that’s what I need to do. I have to trust my body to do everything it can to prevent the cancer coming back. I have to recognise that my reluctance is normal, human and expected but that the only way back to having a rich and full and meaningful life is just decide to trust. I am eating and sleeping well. I am slowly regaining my strength and my wounds are healing. As my physical range of movement returns I need to recognise that my emotional range also needs to be stretched and expanded. Slowly, slowly.

Trust is always a leap of faith. You can’t monitor another person’s behaviour twenty-four hours a day. You just have to make the decision that they are trustworthy and risk being betrayed. I think that’s where I am now with my body. I need to recover from what feels like a betrayal and learn to trust my own health. Will this prevent the cancer from coming back? I honestly don’t think it will make any difference either way.

In the same way that a lack of trust will doom a relationship with another person, I think a lack of trust in my own body will undermine my recovery. I don’t want to spend the rest of my life waiting for cancer. I don’t want to be thinking that every headache or bone ache or stomach ache is evidence of metastatic disease. I know that fear of recurrence is now going to be a regular visitor but I don’t intend to let it take up residence.

I will trust my body for the same reason that I trust my husband. Because without trust there can be no love, and without love, life is not worth living. I will trust my body in spite of what has happened because even though I’ve had cancer, my body has fought back. I will trust my body again because the alternative is unacceptable. If this was a relationship, I could make a decision to leave it but this is the only body I have.

So I will learn to trust it.

 

 

Did I Give Myself Cancer?

It’s a question you’re going to ask yourself sooner or later. If not this question then a version of it. “Why did I get cancer?” “What caused my cancer?” “What could I have done to avoid cancer?” But honestly, the big question is this one.

Did I give myself cancer?

Was it the smoking? Cigarettes are a group one carcinogen and known to contribute to all sorts of cancers, including breast cancer. There are still people that think smoking will only increase your risk of lung cancer. They don’t know how to google. Kim and Donna taught me to smoke when I was thirteen. They were in the year above me at school. I wonder if either of them have cancer.

But I gave up over ten years ago. All the hype around giving up said that after ten years my cancer risk would be the same as everyone else’s. Still, the years of smoking can’t have helped.

Maybe it was side stream smoke. Both my parents smoked. Dad smoked a pipe. I used to sit on his lap while he smoked it. Mum smoked Alpine menthol cigarettes. I associated the smell of tobacco smoke with home.

Most of my early jobs involved work environments full of smoke including bars and restaurants, back when they used to be full of smokers. I’m always fascinated by the research that proves side stream smoke is even more dangerous than smoking. If that’s true, how did they ever establish smoking as a risk? Shouldn’t the people around the smokers have been the ones getting cancer? Anyway, the side stream smoke can’t have helped.

Maybe it’s genetics. My Dad died of cancer at fifty eight. But it wasn’t the same type of cancer. He had bladder cancer. They tell me nobody dies of bladder cancer any more. He just got it a decade too soon. I wonder how soon they’ll find a cure for triple negative breast cancer. I hope it’s not ten years after I’m dead. Maybe having a parent with any kind of cancer makes it more likely that you’ll get cancer. But my mother is nearly eighty and really well for her age so I could just as easily have inherited her DNA. And she smoked for years.

It could be the drinking. Why did I have to get cancer to find out that alcohol is a group one carcinogen, just like cigarettes? How come the only friend I know that has ever had breast cancer is also the one that turns up with lots of wine? I used to be a police officer and after work drinking was not just about relaxing after work, it was also a way to be accepted in a male dominated profession. Being able to ‘drink like a man’ was an asset if you wanted to fit in. Of course I’ve also had long period of time where I didn’t drink or drank very little. Pregnancy, breast feeding and looking after a little human all involved giving up alcohol. I think my daughter was five before she saw me affected by alcohol and that was an accident. I had no idea the lemon and vodka mixers my friend was serving up had so much alcohol in them. Even so, in recent years my husband and I have regularly split a bottle of wine over dinner and it turns out that’s enough to double my risk of breast cancer, so the alcohol can’t have helped.

It’s certainly not any kind of drug taking because I’ve never been into recreational drugs. I don’t think I’ve ever been exposed to high risk substances but then Dad and I used to have fun in the garage restoring old furniture and all those solvents are bad for you. Of course it turns out that cannabis might have some kind of preventative effect against cancer but it hasn’t been conclusively proven and the tradition of mixing it with tobacco and smoking it probably counteracts any benefit. Still, it makes you wonder about all the things you didn’t do that might have prevented cancer.

Maybe I should have had more children. Having children or, more accurately, being pregnant, seems to reduce the risk of breast cancer. Of course I know of women with four or more children that still get breast cancer but more children might have protected me. I also developed mastitis when I was breast feeding and the tissue never fully recovered. The mastitis was in the same breast as the tumours so who knows if there’s a link.

Maybe I should have given up red meat, or food additives, or sugar, or food colouring, or any kind of cleaning product other than a micro fibre cloth. But we’ve been eating really well for a very long time. We’ve paid extra for organic vegetables and meat. You won’t find any soft drink in our fridge. But then the fluoride in the water could be to blame, except that I grew up in an area that only added flouride recently and now we have tank water. Maybe it’s the tank water.

It could be something to do with having a vitamin D deficiency for so long. Of course, I got that from covering up in the sun to prevent skin cancer. Get sun. Don’t get sun. It seems there’s no winning with this one. My surgeon used to be sure that vitamin D was a critical factor but now she tells me the evidence isn’t compelling. Maybe if I just get sun on one half of my body from now on.

Maybe it’s the Wifi that zips through our steel framed house so we can all have access to the internet. We’ve got a family friend with a PhD in electrical engineering and he’s sure that wireless is causing all kinds of cancers. He’s loaned me a couple of books but they’re short on causal link. Just because two things happen at the same time doesn’t mean that one causes the other. Still, should we go back to plugging in our devices? Should I give up blogging? Maybe the laptop is killing me. Or the microwave. Or chem-trails left by jets.

Perhaps it’s my weight. Obesity is a known risk factor for cancer. The thinner you are the less likely you are to have tumours. But I’ve never been obese. I was naturally thin all the way up to my first pregnancy. After that my body wanted to add another ten kilos, no matter what I did but I was never seriously overweight. I haven’t been a regular at the gym until about five years ago when I found a wonderful yoga class but I’ve always been a busy, active person. I walk too fast and find it hard to sit still.

Maybe it’s stress. I spent twenty years in a very stressful occupation, particularly the part of it involving child protection work. I was so stressed I eventually retired medically unfit for duty. But the recent research says stress doesn’t give you cancer. Still, all that stress can’t have helped my immune system very much.

I wonder if my eating pattern contributed to anything. When I was young I used to skip breakfast and eat dinner early. These days they call that ‘intermittent fasting’ or ‘having a longer fasting window’ so perhaps that stint I had at Weight Watchers where they insisted that I eat breakfast is part of the problem. Having a longer gap between your last meal of the day and your first meal of the day gives your body a chance to clean up any damaged cells, like the ones that become cancer. Ironically, it seems to also help you to stay a healthy weight.

According to Louise Hay I gave myself cancer. I’ve been holding on to resentment or hatred. I suppose the cancer came back because I was sill holding on to resentment or hatred, according to her. Except that anyone that knows me will tell you I’m chronically optimistic. I love my life and all of the people in it. If I’m harbouring any cancer-causing resentment it’s undetectable. I guess the advantage of Louise’s philosophy is that dead people can’t argue with her and living devotees don’t want to.

Maybe I should have practiced more positive thinking. It seems to be the one thing that everyone tells you to do when you have cancer. “Stay positive!” they say and so you wonder if that means you’re not already perceived as someone who’s positive, or if they think that you already are and should stay that way. Of course positive thinking is supposed to have an impact on everything from your immune system to your longevity but nobody has been able to conclusively prove through a double blind human trial that it can make any difference at all to your recovery from cancer. And anyway, I am positive!

Maybe the garden gave me cancer. I remember a couple of years back when a storm brought down a tree and decided to prune back the branches. I gathered up a bunch of leafy twigs and bent them back to cut through them. Some of them flicked back as I cut them and stabbed me in the chest, just about where my tumours ultimately formed. I can remember having this thought at the time, “If that scar tissue turns into cancer I will have been killed by a tree! Me, who has planted so many trees!” I don’t even know if scar tissue makes me more susceptible to cancer. It was probably just my brain being adventurous.

One of the most interesting things about having cancer is all of the different people I’ve met while I’ve been having treatment. I’ve met women that have never smoked and women that have never consumed alcohol, or consumed it only occasionally. I’ve met women with lots of children and women with none. One of the fittest women I’ve met had different kinds of cancers in both her breasts. Some of these women have been older than me and some have been younger. Some are doing everything they can to prevent recurrence and others are partying hard.

When I look around me I see women that are seriously overweight that don’t have cancer and women that smoke a packet a day and don’t have cancer and women that drink a bottle of wine or more a night and don’t have cancer.

Did I give myself cancer? What I know for sure is that nobody knows. Any one of the things I’ve been exposed to might have contributed and it might also be none of these things. Nobody with breast cancer can ever be sure. Even people with one of the ‘cancer genes’ don’t necessarily get breast cancer. It’s a lottery.

So if, like me, you’ve spent time wondering what you did wrong, here’s my proposal. Instead of wondering what I might or might not have done to get cancer I’m going to focus on what I can reasonably do to prevent it coming back.