Three Years Today!

It’s official.

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

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

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

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

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

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

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

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

So I made the hardest phone call of my life.

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

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

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

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

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

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

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

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

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

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

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

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

One day at a time.

Just keep going.

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

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

But here’s the truth.

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

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

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

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

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

Life goes on.

 

I am grateful for still being alive.

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

Thank you.

All of you.

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

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

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

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

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

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

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

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

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

Most of all for this:

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

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

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

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

On to the next thing.

Love to all.

I am deeply and humbly grateful. Thank you.

Meg

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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)

Funeral for a Friend

Anyone who was at our wedding remembers a very special moment when my husband and four of his childhood friends posed for a group photo. In their forties, they were still great mates. One of them, Nick, had flown in from New Zealand to surprise the others. He died suddenly doing what he loved a few years back.

This week we received the sad news that another of the five, Philip, had also passed. Philip was diagnosed with thyroid cancer in his late teens and told he wouldn’t live to see his 21st birthday. Tomorrow we’ll attend his funeral. He was 59.

Philip and his wife, Kathy, are a testament to the power of faith. Both deeply religious, they built a successful dental business and raised two beautiful children to be competent and compassionate adults. A good portion of Philip’s life was spent undergoing difficult and painful medical treatments. They prayed. They went to church. They believed that God would help him through.

I do not belive in God but in recent years I have come to believe in belief. Science keeps proving that state of mind can have a positive impact on longevity, quality of life and recovery from serious illness. For many people, religion helps them to find and maintain that positive state of mind.

I had a great conversation with an elderly friend recently. She’s been religious her whole life, and she’s also a great thinker and academic. The two seemed incongruous to me so I asked her about the paradox; how does such an intelligent person place so much faith in an imaginary being?
This is what she said.

“The biggest mistake that atheists make is assuming that people of faith are simple minded or delusional. Logically, I accept that there is no mythical being with a long beard that watches my every move and grants wishes to people that pray to him. I’m not a fool. God, for me, is a word that represents love and hope and all those intangible things that connect us to every living thing. My belief is a choice. I choose to believe because my life is better with these beliefs and I am a better person because of them. Every week I spend time with other people, thinking about how well my behaviour matches my values and being grateful for everything I have. Churches are full of people that don’t literally believe in God.”

It seems for some people that faith is not just about belief. It’s also about suspending disbelief.

I didn’t know Philip well enough to ever ask him if he literally believed in God. It doesn’t matter. On the few occasions that I met him and Kathy I was impressed by the depth of their faith and the significant impact it had made to the quality of their lives. They were better humans because of it.

There have been times in my life when I’ve been cynical about all religions, convinced that they were responsible for war and persecution. I now believe that this argument confuses cause and effect. Some humans will use religion as an excuse to behave badly and to incite others to do the same. But in the absence of religion, wouldn’t the same people simply find another excuse? Would a world full of atheists be a kinder and less violent world? I sincerely don’t think so.

I’m a skeptic. Most people confuse that word with ‘cynic’. A skeptic is someone that believes something based on evidence. I also think it includes being open to the possibility that something might be true where there is insufficient evidence to prove it either way. This is very different to the flawed argument I often see in relation to things unproven; that what is unproven is false, ineffective or useless. Something unproven may be all these things but it may also not be all these things. We just won’t know until there’s evidence.

Having seen the movie, The Connection; Mind Your Body, with expert after expert citing research into what’s known as ‘the mind-body connection’ I no longer doubt the significance of belief. The evidence is there. Our state of mind influences everything. It can switch dangerous parts of our DNA off and it can help us to defy the predictions of doctors.

That’s why I think we should support anyone’s decision to participate in religion.

I do have concerns about some of the dogma in most major religions but I also notice that many of them are evolving. There are now female clergy in previously all male positions. There are people of faith prepared to openly acknowledge that the texts upon which their religions are based are archaic and should be the starting point for discussion rather than than a rule book.

I don’t think it’s okay the threaten children with burning forever if they don’t comply and I do think young people should be taught to behave ethically for its own sake, and not because they fear the consequences.

And yet, when I spend time with adult friends whose faith is significant to them I am struck by a common theme. Regardless of which faith they belong to (and I have friends in most of them) their faith is a source of inspiration, comfort, guidance and community.

Tomorrow my husband will help to carry the coffin of one of his dearest friends. It will be deeply sad for him. Philip’s friends and family will take great comfort in the idea that he is now in a better place and finally free from all the pain and suffering that plagued his life. There will be a service. They will thank God for the long and happy life that Philip shared with his wonderful wife and children.

Credit where credit is due. Regardless of the beliefs of anyone else in the church, there can be no doubt that Philip’s faith, and the faith of his family, have kept him alive for many, many years beyond expectations. It will also be apparent that faith will provide those that loved him with deep consolation during their grief. It seems to me that these benefits make faith a very powerful force in our lives.

Farewell, Philip and thank you for being such a true friend to my husband. You will be greatly missed. Thank you for teaching me, through your undeniable example, about the power of faith.

I am not likely to join any organised religion. All of them have elements that I find difficult to reconcile with my own values. That doesn’t stop me from recognising that faith is powerful force. I believe in belief.

I will keep working on living a life of kindness, gratitude and being the best person I can be. I will keep being inspired by the natural world and the breathtaking spirituality I feel in a rainforest. I like A. C. Grayling’s observation that you don’t need to believe in a god to have a spiritual life.

I know that having this spiritual aspect to my life helps me to be well and helps me to continue to evolve, to test my behaviour against my values, to make mistakes and learn from them. I suspect this is what is supposed to be at the core of all religions.

Perhaps the final word goes to another religious friend who told me this when I asked her about her faith:

“God is another word for love. When you hear god just replace it with love. That’s how you can understand my religion.”

I’ll be doing that tomorrow during Philip’s funeral service. I’ll replace the word ‘god’ with ‘love’ because, when it comes right down to it (and at funerals, it really does come right down to it), love really is what it’s all about.

I will also spend time reflecting upon the power of faith and the benefits of religion. There can be no doubt that it’s a source of comfort, inspiration and love for many, many people.

What to Eat

I was interested to see research reported today that claims the Paleo diet is bad for you. It made me think about how many times researchers have given me dietary advice that was later disproven.

At various times in my life, all of the following have been ‘healthy’ or ‘unhealthy’ based on scientific studies: eggs, milk, chocolate, cheese, wine, red meat, fish, butter, margarine, nuts, refined flour, whole grain foods, brown rice, white rice, fruit juice, protein bars, vitamin supplements, not drinking enough water, drinking too much water, chillies, garlic and other alums, tomatoes and other nightshade vegetables, saliva (okay, that last one is a joke). There seems to have been consistent advice on refined sugar but the jury is out of fruit. For goodness sake!

My friend Cat gives the best dietary advice; figure out what works for your body. Limit processed food. That’s it.

I think it’s great advice because it acknowledges what we all know; what works for us might not be what works for someone else.

I’m over scientists telling me what’s ‘healthy’. The trouble with categorising food as either healthy or unhealthy is that it’s misleading. No food all on its own is healthy. Apples will kill you if that’s all you ever eat! Humans need to eat a diverse diet containing a range of different foods. From now on I’m focusing on what’s nutritious and nourishing.

My other difficulty with food research is that it’s such a blunt instrument. Red meat was ‘proven’ to be bad for us but the research was done using grain fed, factory farmed meat. It turns out that grass fed meat has a completely different nutritional profile. In particular, the omega 3 and omega 6 balance is way out in grain fed meat and this would explain the research results. Often it’s not just what we eat, but the origin of what we eat that matters.

The most common group of human subjects for researchers are college and university students. They like to use young men because then they don’t get the variations caused by female hormonal cycles. I don’t know about you but my diet and lifestyle are about as different to that of an average college student as chalk is to biodynamic, ethically farmed cheese. Even when researchers use a community based control group I know that the kind of variation I can see in the crowd at the local shopping centre means that very few of the subjects are going to have very much in common with me.

So I’m taking Cat’s advice and focusing on what works for my body.

Because I garden I have the luxury of wandering around with a basket every afternoon and deciding what’s going into my dinner that night. It’s interesting that some days I really feel like tomatoes and others I want lots of leafy greens. Is this my body telling me what it needs or just a human desire for variety? I don’t know. I don’t subscribe to the notion that a craving equals a need because I sometimes crave sweet things and experience has taught me this is a sure sign that I’m tired rather than desperately in need of a kick in the blood sugar.

My best response to a sugar craving is something high in protein and an early night.

Because I now fast regularly I’ve become really aware of my reaction to the first thing I eat after fasting. Food with gluten in it makes my tummy bloat. When you’ve got no breasts this is really obvious! I’m eating much less gluten.

I’ve also found that fasting seems to have substantially reduced my cravings for sweet things. It’s likely that the gut flora that tricks my brain into wanting sugar has been killed off or significantly reduced by fasting. I really can make it all the way down the biscuit aisle at the supermarket without reaching for the tim tams. This is both surprising and joyful.

I know that the way my body looks and feels is a direct consequence of the choices I make. If I gain a few kilos I know why. If I want to drop a few kilos I know how. I recognise that keeping my body at a healthy weight will help me to live a longer, happier life. It seems that’s true for everyone, not just cancer survivors.

I also like to consider the broader impact of the choices I make. Organic food isn’t just better for my body, it’s better for the planet. Growing some of my own food means I don’t need to get in a car and drive anywhere to be able to put dinner on the table. Eating more vegetables and less meat makes environmental and dietary sense.

This is what works for me. It might not be what works for you. By all means try some of the different diets if they appeal to you but I’d also encourage you to be prepared to abandon them if you’re not feeling great. I love The Fast Diet. I’ve lost loads of excess weight, re-established a healthy relationship with food and beaten my cravings. There’s no question that I’m healthy because of it and the research would suggest that it’s helping me to avoid cancer.

But it might make you miserable. If it does, find something that works for you.

 

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.

 

How to Have a Really Happy New Year

It’s New Year’s Eve and friends are planning everything from full scale public events to quiet nights at home. We’re still not sure what we’re doing but the offer of something in between sounds appealing. A stroll to the waterfront to watch the local fireworks followed by a wander back to a nearby home for the Sydney edition on television.

I suppose at some point in the evening, whatever we decide to do, there will be inevitable question about New Year’s resolutions. I don’t usually make them. Research shows that they’re a waste of time and that most people have broken them before the end of January. It’s not that we don’t want to break bad habits, it’s just that it takes more than one commitment on one night every year to do it.

I’ve been thinking about successful alternatives to the resolution ritual. I like to pick a theme for the year. Last year (not surprisingly) I chose ‘health’ and I regularly revisited that goal, thinking about how I might incrementally improve on what I’d already done. This works well for me. It’s not a daily obsession. More a thread that runs through the year that I come back to on a regular basis.

My beautiful yoga teacher, Emma, held a class today and reminded all of us that in yoga, we make resolutions (or ‘set intentions’) every time we come on to the mat. Yoga also teaches that we should be kind to ourselves and to not push ourselves beyond our intelligent edge. That brought me all the way back to resolutions and the kinds of intentions that are usually behind them.

It seems to me that a lot of New Year’s resolutions are a mild form of self-bullying. We hunt for our deficiencies, give ourselves a good talking to and commit to doing better. No wonder we fail. Why does being healthy have to involve attempts to leverage guilt and shame? When did guilt and shame ever reliably motivate us to do anything?

What if, instead of beating ourselves up, we saw our new habits and practices as gifts we give ourselves.

The key for every new habit I’ve formed has been the joy it gives me. I love yoga, massage, my weekly gratitude posts, my connection to what I value and my commitment to building on my strengths rather than focusing on my weaknesses.

I am human and therefore fallible. I don’t always eat as much salad as I would like to, and I sometimes have too much refined or processed food although to be honest, this happens less and less as I become more aware of how unwell it makes me feel, but you see, that’s the critical difference. I’m not carrying around a list of things I’m ‘not allowed’ and calling myself a failure if I eat them. I could eat anything. I choose to eat well most of the time.

I’ve even come to enjoy my two fast days every week. Seems crazy, I know, but I enjoy a whole day without cooking and cleaning up afterwards and I love that I’m doing something proactive to prevent cancer from ever coming back.

It’s the same with exercise, drinking much less, building good relationships with friends and family, forgiving those that have upset me, doing all of the little things that add up to a joyful and happy life for me. I choose them.

I choose them because it took cancer for me to really understand that I am limited, time is limited and this is the only body I will ever have. (Thanks again, cancer). It also took cancer for me to understand that the greatest gift I can give to the people that love me is to take action that contributes to my health and happiness.

And that’s all I want from them too. I want them to joyfully make choices that help them to have a healthier life. To give themselves the gift of good health.

It’s also what I wish for all of you.

Thank you to all of you for continuing to read and share my blog. I got an annual report from WordPress telling me that enough people visited my blog this year to fill three concert halls. That’s amazing! It’s also very humbling.

So here’s my wish for everyone this New Year; please consider dispensing with the resolutions and deciding what gifts you might give yourself. You deserve to be healthy. Please shift your focus to being healthier and happier all through 2016 and leave the resolutions alone.

Happy New Year.

One Year Post Mastectomy

Fanfare please!

It’s been one year since my bilateral mastectomy.

It seems like an appropriate time to post an update on my recovery and to reflect on what’s helped, what’s hindered and what needs to happen during the next year.

There will be photos, so if you’re squeamish about scars then best skip this one.

The short version; I feel great. Lately I’ve actually been feeling well, really well, for the first time since my surgery. I’m amazed by the body’s ability to heal and surprised at how long it’s taking.

If you’d asked me just after surgery how long I thought my recovery would take I would have guessed three months or so. Even one whole year later there’s still a little way to go before my body is done.

This is important.

There have been times during the last year when I’ve thought, ‘Is this as good as it gets?’ It seems to me that healing will happen for a while and then there will be a plateau where nothing much changes. I’ve come to think of these plateaus as the body taking a rest from the hard work of healing.

The whole experience has been an opportunity for me to take a hard look at my life and my habits. I suspect there are people whose recovery is passive. They wait and hope, trusting that whatever medical treatment they received will do all the work for them.

It’s been my long experience that recovery from anything needs to be active. We can support or hinder our recovery with some very simple choices, like what we put in our bodies, how much sleep we get and how much stress we’re prepared to tolerate.

I’ve been actively participating in my recovery.

I’ve cared for my skin, particularly the site of my surgery, by using a body oil after my shower. I’ve also taken care of lymphatic drainage from my left side by using gentle massage throughout the day. This area has had a lot of damage following three surgeries and radiation. While I haven’t had any signs of lymphodema, I see regular lymph drainage as an important preventative measure. I’ll be doing this for the rest of my life.

I’ve lost weight using The Fast Diet. My doctor recommended this because there are statistics showing that excess weight can contribute to breast cancer risk. Fasting also triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Anyone whose experienced triple negative breast cancer knows that we don’t have any of the new ‘wonder drugs’ available to us. Fasting seems like the best thing I can do to prevent recurrence. I’ll be doing this for the rest of my life.

Yoga has probably made the single greatest contribution to my recovery. I do at least one class a week (two when my husband joins me) and I practice at home every day. When I wake up in the morning I get dressed in my yoga gear. I have coffee and check my messages and daily schedule and then it’s straight into yoga before breakfast. I’m able to do things with my body that I couldn’t do before I was diagnosed. Of course the point of yoga is not to twist your body into increasingly difficult poses. Yoga is about integrating the mind, the body, the spirit and the breath. Yoga has helped me to love my post-cancer body and to feel strong and flexible, mentally and physically. I’ll be doing this for the rest of my life.

Massage has also been a big part of my recovery. I found a local massage therapist with specialist oncology training. As well as regularly helping me to move back into my own body she’s gently massaged my surgery site and this has greatly assisted in settling all of the nerve pain and helping me to regain sensation in that part of my body. It’s also deeply relaxing.

I was eating fairly well before diagnosis and treatment has been an opportunity to review what goes on my plate. We’re shifting towards more and more vegetarian meals. I rarely eat gluten any more and I feel better for it. I’m naturally eating less food thanks to The Fast Diet and the impact on my appetite. We’ve adopted the SLOW principles as much as possible; Seasonal, Local, Organic, Wholefoods.

I’m eating much less sugar and finding that I can’t eat anything really sweet anymore. I suspect this is because fasting has killed off the gut bacteria that trick my brain into wanting more sugar. The recent discoveries in relation to the gut biome continue to fascinate me. I’m sure we’re only just beginning to understand how important this work is for our future health. It’s certainly a strong motivator to avoid processed foods with all their additives and preservatives that prevent bacterial growth.

Thanks to a couple of visits with a psychologist with ACT (Acceptance Commitment Therapy) training and Russ Harris’s books on the subject, I’m now very clear about what’s important to me, what I value and what I want my life to stand for. To celebrate my one year anniversary I’ve enrolled in a permaculture course. There are those that would argue I don’t need this training because I’ve been practicing permaculture all of my adult life.

My friend Cecilia challenged me to ‘become a world famous permaculture teacher’ which is what motivated me to finally enrol. She’s clever. I don’t really need to become famous (nor do I want to) but I really do want to teach the skills I’ve been practicing for so many years. Permaculture is simply the best way to be human and the map for the survival of our species.

One of my favourite quotes has always been ‘Be the change you want in the world’. When I was a teenager I looked at a photograph of the planet from space showing all of the lights of civilisation and spontaneously thought ‘human cancer’. I was distressed by the damage we were doing to the planet and a sense of helplessness. For me, permaculture holds the key to healing humanity’s cancerous impact on the planet. It’s probably going to keep me well too.

So here’s my latest photos.

As you can see, I’ve come a long way since surgery.

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My chest has gone from being almost completely numb to almost completely recovering sensation. I still have numbness along the scar lines and there’s an area of nerve damage above my original surgery scar (that’s the little arc high on my left side). Nerve damage feels like electricity under the skin. It’s continued to improve with massage and I’m hopeful that it will eventually disappear.

My chest still feels a little tight, as if I’ve got a large sticking plaster on it, but this has improved and I believe it will also vanish in time. For most of last year I felt like I was wearing an undersized bra (how ironic) and the tightness extended all the way across my back. That’s resolved now and I only have my chest to deal with. Yoga and massage both help with this.

I still need to remember to keep my shoulders back and to hold my body up. My doctor tells me it’s common for mastectomy patients to develop a stooped back and rounded shoulders. I suspect this is a combination of relieving that sensation of tightness and, perhaps, embarrassment at having no breasts. I regularly roll my shoulders up and back, particularly when I’m at the computer.

My neck has taken a while to adjust to the absence of two F cup breasts. Removing close to two kilos of weight left my neck and shoulders in a state of shock and once again, yoga and massage have helped. A friend showed me this neat trick; point your index finger at the sky; now bring your finger so it touches your chin and the tip of your nose; push back until you feel your neck is back in alignment. You can also push your head back firmly into a pillow when you’re in bed, or the head rest when you’re in a car. This simple exercise has had more impact on my neck pain than anything else.

As for the other side effects from treatment, I’ve also seen big improvement. I rarely experience any peripheral neuropathy in my feet. I still wake with sore hands but they warm up quickly. I need to be careful with any activity where I hold my hand in the same position for any length of time, such as drawing or sewing. My hands tends to cramp up and become painful. I haven’t given up on my body’s ability to regrow nerves. While one doctor told me I’d probably be stuck with whatever I had at twelve months post chemo, another said it can take six years for nerves to regrow. I’ve already had improvement since my twelve month mark so I’m going with option B.

I have a mild hum in my ears. This is probably also chemo related nerve damage but it could just be age. My Mum has age related hearing loss. It’s important to remember that not everything going on with our bodies is related to treatment. I don’t have that awful metallic taste in my mouth any more and I think this is also a form of peripheral neuropathy. Food tastes wonderful again, particularly straight after fasting.

I wonder to what extent the fasting has promoted healing. The science indicates that it should make a difference. In early days, I certainly noticed more rapid healing following a fast. I’ve observed that if I have any kind of skin blemish it’s usually completely healed after fast day.

As you can see from the photos, the radiation damage to my skin has greatly improved. As well as the circulatory benefits of massage, I think the regular application of rose hip oil has made a huge difference.

As you’ve probably already guessed, my mental state is great. People recovering from mastectomy are, not surprisingly, at high risk of depression. I’m very grateful that the care I’ve received and the work that I’ve done have helped me to avoid that particular complication. In many ways, depression is a worse disease than cancer and certainly at least as deadly. I think avoiding depression has involved a combination of things but particularly the information about ACT, practicing ACT and the benefits of yoga.

The most significant contribution to my state of mind has been the love and support I’ve received from so many people. Special mention must go to my beautiful husband who has continued to love and cherish me through all of this. I’m still beautiful to him. It’s an enormous advantage to have someone like that in my life and I grieve for those women that go through this on their own, or whose partners leave them during treatment.

I no longer experience ‘chemo brain’. I feel as mentally alert as I ever did. I’m also calmer, happier and less stressed than at any other time in my life.

I’m now taking stock and asking ‘What else can I do to continue with my recovery and to improve my health?’ I’ll also be doing this for the rest of my life. I believe that there is no upper limit to how well I can be. To put it another way, no matter how well recovered our bodies seems to be, there is always more we can do to improve our health.

Thanks to everyone that’s been following the blog and the accompanying Facebook page. Special thanks to those that have taken the time to let me know that something they’ve read has helped them with their own recovery. You’re the reason I keep writing.

Go well. Live well. My best wishes for your continuing recovery.