Do we get what we expect?

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

And then you wait.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A bit of a book

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

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

The downward spiral of distraction

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

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

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

Let’s go through this step-by-step.

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

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

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

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

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

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

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

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

Does any of this sound familiar?

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

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

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

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

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

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

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

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

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

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

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

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

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

* * * *

(c)2017
M J McGowan

 

Three Years Today!

It’s official.

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

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

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

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

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

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

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

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

So I made the hardest phone call of my life.

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

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

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

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

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

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

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

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

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

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

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

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

One day at a time.

Just keep going.

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

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

But here’s the truth.

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

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

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

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

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

Life goes on.

 

I am grateful for still being alive.

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

Thank you.

All of you.

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

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

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

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

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

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

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

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

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

Most of all for this:

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

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

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

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

On to the next thing.

Love to all.

I am deeply and humbly grateful. Thank you.

Meg

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)

Before You Reclaim Your Curves

There’s a new pink charity on the block. It’s called ‘Reclaim Your Curves’ and it aims to provide support and information to women seeking breast reconstruction following mastectomy.

Here’s their web site:
Reclaim Your Curves

It’s a worthy aim. The choices we make following mastectomy are intensely personal and the provision of more information to women can only be a good thing, right? Well……maybe.

Impartial information that allows women to make an informed decision is a wonderful thing. If only this charity was impartial. Instead, I found it to be a promotional site for breast reconstruction.

For those of us that chose not to go down the reconstruction path, some of the language is disturbing (if not offensive). On the home page of their website there’s a short slide show explaining statistics. It tells us that 17 Australian women will be told today that they need a mastectomy but that “only two of these women will restore their bodies”.

Wait….. Restore?

Then there’s a cute video of women that chose reconstruction talking about how happy and proud they are with their choices. There’s nothing about the down side. No comment from women that chose not to have the surgery, or women that had it and regretted it. It’s a very one sided presentation accompanied by cheery music. Breast reconstruction; what’s not to love?

On the page ‘Get started with breast reconstruction’ there’s this comment:

“Breast reconstruction offers you the opportunity to get back something that breast cancer has taken away.”

Which would be true if reconstruction gave you back your breasts. But let’s be honest. It doesn’t. It gives you back a mound of fat and/or tissue transplanted from another part of your body that approximates a breast, or an implant that approximates a breast. But nothing can really give you back your breasts.

And then there’s your nipples. When people ask me if I miss my breasts I can honestly say that I don’t, but oh how I miss my nipples. Reconstruction can’t give me back the sensation of my husband kissing them or touching them.

Reconstructed breasts can never have the same sensation as real breasts. It’s interesting that in the section under ‘Myths about breast reconstruction’ myth number six reads:

“Reconstructed breasts have no feeling”

Which might lead you to believe that reconstructed breasts have normal sensation. But they don’t. Read on and the comment below this ‘myth’ is ambiguous.

“Women who have natural tissue reconstruction tend to regain more sensation than women who have breast implants, because nerve endings in the chest (if they are not damaged during mastectomy) sometimes spontaneously connect with nerve endings in the flap.”

Sometimes. So not always. Not even ‘often’. And implants not at all. Once again the language seriously downplays one of the significant issues involved in reconstruction; it’s extremely likely that you’ll have reduced sensation in your chest area regardless of which procedure you choose.

Another of the listed ‘myths’ is this one:

“Reconstructed breasts don’t look natural”

which includes the comment:

“Many women have reconstructed breasts that cannot be distinguished from natural breasts.”

I’m assuming this claim relates to the way reconstructed breast look in clothing. When I was researching breast construction I looked at all the photos I could find. The results varied from good to horrific but not once did I see a result that looked like natural breasts. I also saw plenty of reconstructions that would not have looked good under tight clothing. There are no guarantees.

Here’s a link to a site that contains some photographs of reconstructions so you can draw your own conclusions:

Breast reconstruction images

Keep in mind that these are considered to be good results.

The Reclaim Your Curves site is honest about the possibility of repeat surgery to achieve an acceptable result but once again, the risks are downplayed. Every single surgery carries risk and more surgery increases that risk. Women need to know that.

The site compares reconstruction rates in Australia with the UK and the USA and makes this comment:

“The Australian Society of Plastic Surgeons (ASPS) believes the comparatively low rate in Australia points to a lack of awareness of what is involved, and the procedure itself, as well as the lack of support services in regional, rural and remote populations.”

How about the possibility that rates are low because many of us considered our choices and chose not to have reconstruction?

Then there’s the very real concern about vested interests. The members of the Australian College of Plastic Surgeons have financial reasons for promoting breast reconstruction. And notice it’s their ‘belief’. It’s not a conclusion based on research.

Here’s some research:

Psychological effects of mastectomy with or without breast reconstruction

What they found was this:

“The results indicate that breast reconstruction is not a universal panacea for the emotional and psychological consequences of mastectomy. Women still reported feeling conscious of altered body image 1 year postoperatively, regardless of whether or not they had elected breast reconstruction. Health professionals should be careful of assuming that breast reconstruction necessarily confers psychological benefits compared with mastectomy alone.”

Then there’s the added concern that some of the sponsors of this site also rely upon breast reconstruction as a revenue stream. One of their major sponsors is Airxpanders, a company that makes a product used in implant surgery. There’s a clear conflict of interest.

Perhaps most dangerously there’s the claim that reconstruction won’t make detecting cancer recurrence any more difficult. This claim is true if you’re talking about detection using MRI or mammogram but it’s clearly not true if you’re talking about self examination. I’m a triple negative breast cancer survivor and risk of recurrence is high. I have already had the experience of finding a lump (thankfully benign) under my skin. It’s just common sense that a lump occurring under an implant or transplanted tissue is going to be harder to detect with your fingers. I think it’s dangerous and irresponsible to tell women otherwise.

My primary concern with this charity is that the tone and content seem to be strongly supportive of breast reconstruction. This is not a site that provides impartial information. The risks and complications associated with surgery are downplayed and there’s no comparison between reconstruction vs no reconstruction. It’s assumed that reconstruction is the way to go.

I suppose that Reclaim Your Curves could respond by saying that they assume any woman coming to their site has already decided she wants reconstruction, but I doubt that’s the case. I’m sure that there are many uncertain visitors seeking information. They deserve to know all their options.

The site includes lots of quotes from women happy with their reconstruction, and none from those that aren’t. Once again I feel this creates a false impression. Yes, reconstruction can be a wonderful choice for some people but it can also be a disastrous choice for others. An informed decision can only be made when women are given all of the information.

Then there’s this:

“Most women who have undergone reconstructive procedures are happy with their results and glad they pursued it. Lots of women get through with no problems at all, while other ladies unfortunately have some hiccups along the way, so it is good to get a realistic idea of what can be achieved and also how the stages might play out before you embark on this part of the journey.”

I think ‘hiccups’ seriously downplays the very real risks. This quote is from the section ‘Working out what you want’ which, once again, includes no information about why a woman might choose not to have reconstruction. Also, working out what you want apparently doesn’t require you to have a full appreciation of the risks associated with each procedure.

The only reference I could find to the risks is in their ‘myths’ section.  The myth in this case is ‘Something always goes wrong’ and the advice says this:

“Any surgery has a potential for complications, and breast reconstruction is no exception. Most women who have breast reconstruction, however, do not experience problems. Serious problems are uncommon, but the risk of infection, a negative reaction to anesthesia, delayed wound healing, excessive bleeding, hematoma, seroma and an unsatisfactory cosmetic result are possibilities. (Another good reason to find a skilled and experienced surgeon for your procedure.)”

Notice how the language states that serious problems are uncommon but gives no statistics. What’s uncommon? One in one hundred? One in twenty? I’d like to know before I submitted to a medical procedure of any kind. I’m also concerned that the language implies that a skilled and experienced surgeon is the way to avoid any problems. Yes, it’s ambiguous language and you could read it either way, but my concern is that even the most skilled of surgeons makes mistakes.

I’d like to make the case that providing women with support to make decisions about reconstruction should include sound advice based on facts and research. It should include all of the options available to women, including the option of not having reconstruction.

To their credit, a recent ‘Reclaim Your Curves’ event listed someone who was ‘flat and fabulous’ as one of the speakers, but she never appeared. The only explanation given was that she had been booked to speak but was unavailable.

The information evening has glowing reviews on their web site but to some of those attending it had disturbing shades of a sales promotion. An elderly woman was told that it was never too late to have reconstruction and there was a smattering of applause. No mention of the risks that this surgery would have for someone her age. A doctor reassured everyone that there was a “95% success rate” when it came to reconstruction.

But you see, a 95% success rate means that one in twenty women had a failed reconstruction. The presenter brushed away questions about failures with an acknowledgement that it wasn’t pretty and the audience didn’t want to know about it.

But the audience should know about the failures. They should understand what happens when the body rejects transplanted tissue or implants. They should know about the incidence of staph infections in hospitals and the risks associated with anaesthetic. To deny women this information is to deny them their right to a fully informed decision.

When I made the decision not to have reconstruction and wrote about it, I received lots of messages from people about that post. In the interest of balancing out the highly positive comments on the Reclaim Your Curves site, here’s a selection of comments from another perspective:

“I don’t think they should call it breast reconstruction. I didn’t get breasts. I got numb mounds on the front of my body. They never felt like part of me.”

“It makes me angry when I read comments about women reclaiming their femininity. I’m not less feminine without breasts.”

“My reconstruction was a disaster. My body rejected the tissue and it became stinky and rotten. They had to cut more of my body away to get rid of the infection. The pain and the scarring were terrible. I wish I’d just had a mastectomy and left it at that.”

“Nobody told me how painful it would be. I had a morphine pump after the surgery and even though I used it I was still in the most terrible pain. The nurses told me it was normal. I still have nightmares.”

“It was just assumed I’d want a reconstruction. It wasn’t discussed with me. I didn’t get a choice. When I healed from my mastectomy I had these flaps of skin that the surgeon said would make reconstruction easier. But I didn’t want reconstruction. Now I’m trying to decide if I should risk more surgery or just live with the results.”

“The healthiest choice for me was to just have the mastectomy. I wanted to get my life back to normal as soon as possible.”

“After reconstruction I couldn’t exercise for months. I gained a lot of weight and that’s had a serious impact on my health. I get anxious about how my weight affects my cancer risk.”

“I decided to have the mastectomy and just wear foobs. After a couple of months of messing about with bras and padding and prosthetics I just stopped worrying about it.”

“If you look at me you wouldn’t know if I’d had a mastectomy or if I’m just naturally flat chested. I’ve done weights to build up my chest muscles and I think I have a nice athletic shape now. I don’t miss having breasts at all.”

and finally, the saddest message I received, from the husband of a woman that underwent breast reconstruction:

“Katie wasn’t sure about reconstruction and even though I had my doubts I encouraged her to do what ever she wanted. There were complications and she lost a lot of blood. Then she got infected and became very ill. I was beside her in the hospital when she died and all I could think was that if I’d told her not to have it, or that I didn’t want her to have it, she’d still be with me.”

This brave man now spends some of his time telling his story and encouraging people to consider the small but very real risk of death that comes with reconstruction surgery. He tells me he’s particularly concerned about any message that implies that men will have a preference for reconstruction;

“It wouldn’t have made any difference to me. To be honest, I found the idea of moving part of her body up to her chest a bit freaky, but I wanted to support her so I never said anything. I wouldn’t have loved her less without breasts.”

It is possible to provide clear and unbiased advice about breast reconstruction and a number of sites already do this. The Breast Cancer Network (Australia) site has this:

BCNA Breast Reconstruction Advice

It’s clear and impartial advice that supports the right of all women to make whatever choice best serves them, including the decision to not have reconstruction (although there is a link to the Reclaim Your Curves site).

And the UK cancer research site has this:

UK Cancer Research Breast Reconstruction Advice

Both sites are, in my opinion, much better sources of advice on breast reconstruction. The BCNA site openly considers the possibility that a woman may not want reconstruction and the UK site is very clear about the possible complications associated with any kind of reconstruction procedure.

It will be interesting to monitor the progress of this charity. In particular, it will be interesting to see where their funding comes from and how it’s spent. There’s a case to be made for diverting the funding that this charity attracts to other more needy causes, particularly given the clear vested interests of some of the supporters and participants.

Ultimately my issue is with providing all women with freedom of choice. I fully support any woman’s decision to have reconstruction if it helps her to recover from the physical and psychological impact of breast cancer, but anyone making this decision should have a full appreciation of the risks, the facts and the potential for things to go horribly wrong.

Reclaim Your Curves does not, in my opinion, provide unbiased information. In fact it’s a very much a case of ‘me think thou dost protest too much’. To put it another way, there’s an awful lot of justification for having reconstruction and not a lot of information on the risks or potential complications.

If you’re faced with the inevitability of a mastectomy then reconstruction should certainly be one of the options you consider, but you should have balanced and unbiased information that supports what ever decision you ultimately make.

You shouldn’t feel ashamed of your choice to have reconstruction, or your choice to NOT have reconstruction. There are pros and cons for both. Interestingly, the most recent piece of research I’ve seen reported that women choosing reconstruction did so for aesthetic reasons, and women choosing not to have reconstruction did so for health reasons.

This is entirely consistent with my own experience. Having researched breast reconstruction I ultimately decided that I wouldn’t have it. I don’t deny that it’s been wonderful for many women but it wasn’t for me.

The case in favour of having the least amount of surgery with the shortest possible recovery time is worth considering. And that’s how my husband summed it up. He was incredibly supportive and determined to let me make up my own mind, but when I ultimately decided on a mastectomy without reconstruction he admitted  his relief.

“I know I would have dealt with it, but the idea of moving your tummy to your chest was freaking me out. There’s just something not right about it. You are not your breasts. I love you. I want you well. I want you well as soon as possible, without more surgery and more surgery after that. I won’t love you less without breasts and I’m proud of you for making a decision that gave you the least possible surgery and the shortest possible recovery time. Your health is my top priority. Not your appearance.”

Yes. That’s what it comes down to. My core values are about my health. Not my appearance. Breast reconstruction would have meant longer surgery, greater risk, longer recovery and the possibility of additional surgeries and all of those associated risks. And for what? Something approximating breasts but not really breasts.

I know there are women that think of their reconstructed breasts as real breasts. I also know that I wouldn’t feel this way about them. My friend Leonie summed it up this way:

“For me, breast reconstruction was the equivalent of giving me a stuffed toy to replace my pet dog after it had died. My breasts are gone and I would rather deal honestly with the reality of that than pretend that any kind of surgery can replace them. It can’t.”

I know that not everyone feels this way, but Leonie, me, and plenty of other women do. Our experience is no less valid or relevant than the experience of those women happy with reconstruction. It is certainly validated by the many women that have subjected their bodies to reconstruction only to regret it.

If you’re considering reconstruction then please know this; Not having it is a legitimate choice. If you’re feeling like that option isn’t on the table then speak up. Ask questions. Ask doctors to give you information about the difference it makes to your recovery time, your pain, your risks, your potential complication and your long term health. Make the decision that best helps you to recover but know that there are many of us out here that chose not to have reconstruction because we didn’t think the risks were worth it or we didn’t think the results justified the cost to our health.

I don’t need to reclaim my curves. I still have curves. I just don’t have breasts. And I’m very happy about that.

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.

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.