Book Reviews!

There’s something mildly terrifying about writing a book.

In the writing phase I was consumed with craft and content. I wanted it to be simple, but not too simple. Useful and not overwhelming. Helpful and not exhausting.

After completing the first draft I put it aside for several weeks, came back to it and was shocked by how much repetition and useless waffle it contained. I edited fiercely.

A couple of people read through the draft for me, including one very generous friend whose a professional writer. The feedback was good. It was time to publish. No reason not to just jump right in and do it. And yet it felt terrifying! It suddenly occurred to me that I was putting myself out there, open to whatever criticism people decided to hurl at me. I metaphorically chewed my nails as I waited for the book reviews to arrive.

First came the friends. How I love my friends! A couple of them found the time to post their comments on the Amazon site. Here’s what they said:

A very valuable resource for everyone, not only those that have had cancer. There is so much knowledge and information within this book for tools with working through freeing yourself from fear. I believe sometimes when we get caught in fear, there is fog, we don’t seem to acknowledge our own values and get lost in the mist. There is so much within this book that draws on many techniques for working through this and with a lovely sense of humour, it shows Meg McGowan has had the life experience to walk the talk. Thank you Meg McGowan.

And this:

If I could pay $5 to avert one hour of meaningless fear, would I spend it? “Of course!” I thought, and bought this book.
It turned out to be full of practical ideas that I can use straight away on myself and the fearful ones around me…thats everyone alive.
Holding hands with the fear-monster is a sweet image, and does it work?
Well, I tested it.
After reading the book I did a suitable amount of scary-monster hand-holding, then went though a list of scary phone calls, scary conversations, procrastinated tasks.
I’m unharmed, and the quality of my future is now better. You don’t need a life-threatening illness for this book to protect and nourish you.
As a bonus, dandelions will forever look more beautiful, after reading this book.

When I checked today I found two reviews from people I don’t know. How exciting! Here’s what they’ve said:

If a cancer diagnosis feels like too much to bear, you’ll find solid comfort here. The exercises are quick and easy to perform. Yet they are profound and will produce lasting results. McGowan’s book is filled with wisdom that can only have come from one intimately familiar with the traumatizing effects of cancer diagnosis and treatment. I strongly urge you to buy this book. You’ll be glad you did and will, like me, refer to it for years to come. This book is a rare find, and the author deserves praise.

And this:

This book ticks all the boxes for handling the fear of recurrence that is part of all cancer patients’ lives after diagnosis.
It is written clearly and cuts through all the fog that surrounds us when we feel overwhelmed.
As a breast cancer survivor, I think Free from Fear should be on everyone’s Important Items list.
It is an exceptional read from someone who has been there, and understands.

Over on the Breast Cancer Network Australia site I’m also getting some really great feedback. Time to exhale.

You see, the thing is, even if I now get negative responses, or even if I never sell another copy of the book, it’s all been worth it.

Maybe I should write another one 😀

Here’s the Australian link (Kindle only)
Free From Fear on Amazon.au

Here’s the US site where you can also get the paperback.
Free From Fear on Amazon

There’s a promotion coming up on the 19th of June when the Kindle version will be available for free for three days. I’m celebrating four years since that visit to Breastscreen found three triple negative tumours, so it seemed like a good way to celebrate.

Thanks so much to everyone for all of your support. I couldn’t have done it without you. ❤

Falling in Love Again

Cancer makes you question everything.

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

Then cancer.

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

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

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

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

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

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

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

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

“I’d like to fall in love again.”

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

“I can understand that. I ………..”

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

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

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

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

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

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

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

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

The 36 questions that make you fall in love

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

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

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

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

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

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

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

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

The Game of Life Shop

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

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

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

Have I fallen in love again?

What do you think.

 

 

 

 

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.

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

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.

Sleep Is The Great Healer

We spend a quarter to a third of our life doing it and yet there’s still so much about it that’s a mystery. Why do some people need nine hours of it and others thrive on only three or four? Why do we dream and what do our dreams mean? Why does the lack of sleep induce distress akin to mental illness? And the biggest question of all; Why do we sleep?

One thing has become really clear. Sleep is the great healer.

The extent to which it’s critical to our recovery was made clear to me in this excellent TED talk by Jill Bolte Taylor on stroke recovery where she explains how she rebuilt her brain. Prior to her stroke, Jill was a brain scientist so her insights are particularly fascinating.

Like many people she’s critical of the way hospitals are designed around staff rather than patients, with people being woken up at regular intervals to have their ‘vital signs’ checked. This is not conducive to recovery!

Most of us understand the importance of sleep but have you ever noticed how few people report sleeping well. It’s possibly the most important contribution we can make to good health, so here’s my collected wisdom on getting a good night’s shut eye.

When we remove those that sleep well for long enough and wake refreshed, we’re left with those that fall into one or more of the following groups:

  • Those that struggle to get to sleep
  • Those that struggle to stay asleep, waking once or several times a night
  • Those with a medical condition that directly impacts their sleep
  • Those that have been asleep for what should be long enough and yet wake feeling tired and unrefreshed by sleep.

Let’s start with the fourth group. If you’re in this category it’s worth having a sleep study done. The most common cause of un-refreshing sleep is apnea (which moves you up into the third group), a condition where you stop breathing intermittently while you sleep. In sever cases it can be life threatening. Even mild cases can have serious affects on your health. You can now get a sleep study kit that you take home overnight. You stick on the electrodes and climb into bed. A little suitcase records all of the information and you usually get a report back within a couple of weeks.

If you’re diagnosed with apnea there are a couple of options, including wearing a device that maintains air pressure while you sleep or having corrective surgery. My husband had surgery last year with great results and he’s now healthier, happier and has much more energy during the day. He couldn’t stand the CPAP machine but lots of people are huge fans.

There are other conditions that might put you in the third group including narcolepsy. These always need medical treatment and you should talk to your doctor about how to improve your condition. All of the other advice here about sleeping will help but some conditions really do need medical intervention.

If your sleep study shows that you don’t have apnea it might also give you some idea of why the quality of your sleep isn’t leaving you refreshed. It could be something as simple as not sleeping deeply enough and this can send you back to the bedroom to look for causes. Which is handy, because that’s exactly what we need to do for people in the first two categories.

Good conditions for sleep might seem proscriptive because we’ve all seen people that can apparently sleep just about anywhere. It’s true that most of us could fall asleep propped up against a wall if we were tired enough but it’s unlikely that the sleep we get would of a very good quality.

Sleep moves through cycles that usually last about 40 minutes. If something is regularly disrupting your sleep you’re not going to achieve the deepest levels of sleep that allow you to feel well rested. Obvious culprits include a snoring partner, a noisy environment or an enthusiastic nocturnal pet. Here’s a short check list of the ideal sleeping environment:

  • Dark; light on the outside of your eyelids triggers you to wake up.
  • Cool; the ideal temperature for sleep is around 18 degrees celsius which is much cooler than the 22 degrees we like when we’re moving around. If you’re in air conditioning it might be too warm (and too dry) to sleep well.
  • Quiet; even low level noise can disturb sleep. Most of us become accustomed to familiar noises which is why it’s possible for us to learn to sleep next to train lines or busy roads. We don’t stop listening when we sleep. Sudden and unusual noises will wake us up or disturb our sleep. Sometimes even the low buzz of an electronic device is enough to mess with our sleep patterns. Try moving the phone and charger or the electronic clock out of the bedroom.
    Unfortunately for some of us, our partner might be the source of the noise. In these cases it really is worth considering separate bedrooms if that’s possible. You can still spend time together before going to sleep or in the morning.
  • Comfortable; I think there’s a lot of hype and money in the mattress industry these days. Interestingly, most of the european population sleeps perfectly well on foam mattresses but in Australia we’re obsessed with the inner-spring. The best mattress is one that provides enough support to keep your back aligned along with enough padding to stop your bony bits becoming uncomfortable. I’ve avoided replacing my latex mattress by adding a topper to it in memory foam.
  • Clean; Dust mites, mould and allergens can all have a negative impact on your ability to sleep. Fresh air is also important and this can be a real problem if you can’t have windows open due to noise or live somewhere where the outside air is far from fresh. A portable air conditioner or dehumidifier is probably your only option here.
  • Un-interupted; I adore my cat. He comes in each morning for a cuddle. He doesn’t sleep with me because he thinks it’s a great idea to get up at 3.00am and run around the house like a deranged lunatic. When our sleep is interrupted it prevents us achieving deep sleep. Do what you can to protect your peace.

If you’re finding it hard to get to sleep or to stay asleep then start with your sleeping environment. A lot of people have solved their sleeping problems with some very minor adjustments, like black-out blinds or a thermostat adjustment.

If you’ve run a diagnostic on your bedroom, created the ideal sleeping environment and it’s still not happening for you then here’s a list of the most common things that disturb our sleep:

  • Overstimulation; we sleep best when we’ve spent the last hour or so of the evening winding down. Do whatever helps you to relax. The obvious exception to the overstimulation rule would be sex. Nothing beats an orgasm for facilitating sleep. Isn’t that good news!
  • Exposure to light in the blue spectrum; this signals our brain that it’s day time. Unfortunately computer screens and energy saving globes are both common sources of light in the blue spectrum. You can get an ap called f.lux that will adjust the light on your computer and you can also get ‘warm’ globes. Fortunately, exposure to light in the yellow/red range has the opposite effect so taking advantage of candle light and fire light will help you wind down.
  • Not enough sun; it seems odd that we need sunshine to sleep well but it turns out that eating our breakfast in the daylight is a great way to set our body clock. This is particularly important for people on shift work or those recovering from jet lag. When you wake up, go outside and get some sun. If your ‘morning’ occurs during darkness then you might want to invest in a light that simulates sunlight. This should improve your ability to get to sleep and the quality of that sleep.
  • Overindulgence; too much food or alcohol will disrupt your sleep. Alcohol might seem like a great way to unwind but it actually disrupts your sleep cycle and this (along with dehydration and altered brain chemistry) contributes to feeling hung over the next day.
  • Anxiety; a big favourite with those of us dealing with serious illness and this one deserves a book rather than a few lines. Luckily there have already been several great books written about dealing with anxiety. My favourite is Russ Harris’s ‘The Reality Slap’. Breathing exercises, meditation and yoga are also wonderful. Don’t just put up with it. It isn’t helping you to recover and it’s robbing you of your sleep. If it’s really bad then get counselling for it.
  • Pain; for many people it’s the great sleep thief. Fortunately there’s now been some great advances in managing chronic pain, including improvements in medication and a much wider range of medication-free strategies. Calming music, gentle exercise and meditation can all help with handling pain. So can hypnosis and counselling from a good psychologist (particularly one with ACT training). Massage and other ‘touch therapies’ are also excellent for helping to deal with pain.
  • Monkey Mind; I love this Buddhist term for the way our minds will jump around from one thing to another, never settling in one place. They recommend meditation and it certainly works well. Another great technique is to spend ten minutes listing all of the things that are occupying your thoughts. Write them down. Then you can put your head on the pillow and when ideas pop up you can thank your mind, remind it that you’ve already made a note of that for tomorrow and then relax.

My husband and I have both had periods of time where we kept waking up in the middle of the night, often at the same time every night. For me, a short passage in a book about the subconscious helped me to overcome this. It explained that when we spend all day talking about how we can’t sleep we’re actually programming ourselves not to sleep well. I started changing my internal dialogue to “I will sleep well and wake up feeling great” and I stopped talking to other people about my bad sleeping habits. This solved my problem.

My husband not only woke during the night, he then experienced annoyance and frustration at being awake. This, of course, made it much harder for him to get back to sleep again. Recently a friend shared an article about a bit of historical research that indicates it was once quite common for people to sleep twice during the night. It seems they would go to bed shortly after sunset, wake some time during the middle of the night, use that time to read or do bookwork by candle light, and then go back to bed for their ‘second sleep’. This has made a huge difference to Graham. He’s in the kind of job that he can dip in and out of and it’s often some sort of complex work problem that wakes him. Now he gets up, spends a couple of hours on it and then goes back to bed.

If you remember that sleep moves in roughly a 40 minute cycle then there’s no reason why we couldn’t break our sleep up into whatever sort of pattern works best for us. When my daughter was a baby the key to coping in the early weeks, when she had terrible sleeping patterns, came from a friend who suggested that I sleep whenever she slept. It seemed counterintuitive to me that grabbing a couple of hours here and there could make up for ‘a good night’s sleep’, but it did.

My other really interesting experience with sleep happened following my first surgery to remove the remaining tumour from my breast. I was in a shared ward with a woman that had been through reconstructive surgery. She was experiencing high levels of pain and was calling out with distress throughout the night in spite of the morphine pump. I put my headphones in and spent the night listening to calming yoga music and led meditations. I didn’t sleep. To my surprise I felt as refreshed the following day as if I’d had a really good sleep! This wasn’t a fluke. I now regularly use my iPod when I’m having difficulty sleeping. Sometimes I fall asleep and sometimes I don’t but I always feel great the next day. (Tip; get some of those ear buds that sports people use so they don’t fall out.)

Most of the techniques that help you get to sleep involve some kind of mindfulness, or some kind of activity designed to distract your mind from your everyday concerns (like counting sheep). Here’s just a couple of my favourites:

4 – 7 – 8 Breathing

Alternate nostril breathing

These are both beautiful yoga breathing exercises that help me to calm anxiety and relax my body. I’ve done both from the comfort of my bed.

It might seem strange, but I also find that doing pelvic floor exercises and counting them backwards from 1,000 helps. This is a simple activity to distract my mind and hey, who doesn’t need to do more pelvic floor exercises!

There’s a very popular yoga relaxation technique where you clench and then relax each part of your body, starting with your feet and moving to your calves, knees, thighs and so on, all the way to the top of your head.

If that’s all a bit much then just a simple meditation on the breath can help to get you ready for sleep. You don’t try to force your breath at all. You just observe it. Count as you breathe in and count as you breathe out. Now gradually start to increase you exhale by one or two counts.

My final tip is that if you’ve tried everything and sleep just isn’t happening then you’re better off getting up and having a glass of milk than staying in bed and fretting about it. Don’t reach for any electronic devices. Just have a drink of milk and then head back to bed and start again. If you can’t sleep, try to rest and relax rather than fretting over your lack of sleep.

Most importantly of all, remember that sleep is the great healer so if you’re finding you need more of it than usual during treatment or recovery just go with it. When I was having chemo I was sleeping up to 14 hours a day. During radiation treatment it was about ten hours a day. I’m now back to around eight or nine hours every night. Healing bodies need much more sleep, so snuggle up and don’t feel guilty about it.

Chemo Brain And How To Treat It

My brain is back.

It’s like the sun coming out after a week of rain. Except it’s been raining for over two years. The return of my full cognitive function hasn’t been as sudden as a change in the weather, but the impact on my mood has been as dramatic.

It’s like discovering I’ve been living in just one room and that my home has three storeys. It’s like discovering I’ve been driving around in first gear and my car has five gears. With hindsight, I realise how badly my cognitive functioning was effected by treatment, although living through it I probably wasn’t cognisant of how impaired I really was (and this might be one of the few benefits of chemo brain).

I know this condition has a huge impact on the quality of life of so many survivors, so I thought I’d share my best advice for recovery.

First of all, understand that as far as researchers have been able to determine, it’s not exclusively caused by chemotherapy. While we all call it ‘chemo brain’ or ‘chemo fog’ the correct description is ‘mild cognitive impairment following cancer treatment’.

The causes haven’t been clearly identified but it’s a real condition, and it can be picked up with imaging technology. In one study, breast cancer survivors not only required a larger area of their brain to respond to a question, they used more energy to do so. In another, the resting metabolic rate of the brain was slower.

So the first bit of good news is you’re not imagining things. That inability to remember your phone number, the name on the tip of your tongue or the misspoken phrase are all manifestations of ‘chemo brain’. So is a general feeling of fogginess, mental sluggishness and difficulty learning anything new.

Coping with it usually involves implementing the kind of strategies they give people with early dementia; keep lists; use a calendar and a notebook; have one spot where you always put the things you lose regularly. All of this helps but what we really want is an effective way to hasten our recovery.

The really good news is that recovery is not only possible, most people find it relatively easy to achieve.

Apart from physical damage caused by treatment, chemo brain might also be caused by a range of other factors. The main suspect is anxiety, which can cause cognitive impairment all on its own. Hands up anyone that managed to get through cancer without feeling anxious. Depression is also a common after effect of treatment and yes, it’s also characterised by brain fog. If you suspect you’ve got ongoing issues with either anxiety or depression it’s important to discuss this with your doctor.

Vitamin D deficiency could also play a part because most of us had to avoid the sunshine for several months due to either chemotherapy or radiation. If you didn’t take your vitamin D supplements and treatment just got you out of the habit of sitting in the sun then an improvement could be as close as eating breakfast outside every day. Special note here to avoid supplements with calcium in them because they’ve been shown to be a health risk and to favour sun over supplements when you can because the type of vitamin D your body manufactures in response to sunlight is more beneficial.

If you’re experiencing serious mental impairment it’s also worth asking your doctor to give you a simple cognitive test to rule out dementia or any other illness that might be impacting your cognitive function. Don’t just assume it’s a result of treatment.

Having discussed chemo brain with a number of survivors there’s now been several that have overcome their problems by dealing with anxiety, depression or vitamin D deficiency so consider those first. Once you’ve ruled out other causes there’s still plenty you can do to reclaim your brain.

Here’s my top six recommendations for treating chemo brain. Many of these are things we should all be doing to improve our health and boost our immune system so adding them into your daily routine should bring a whole lot of benefits.

Please treat this list as a menu rather than a prescription. Choose what appeals to you and try it for a few months before you rule it out. And please share any other ideas you have about this condition.

  1. Fasting (aka The Fast Diet or 5:2 calorie restricted eating)
    What it is: an eating strategy where you limit your calories to 500 on two days each week.
    Why it might help: Fasting triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Even people that haven’t been through cancer treatment regularly report improved mental clarity when they adopt this way of eating.
    My experience: My cognitive function had been improving over time since I finished treatment but my biggest step forward coincided with switching to this way of eating. Of course it’s possible that this shift was coincidental so I’d be very interested to hear from anyone else that tries 5:2 or some other fasting regime and notices a brain boost. There are lots of good reasons for cancer survivors to consider fasting in any case.
  2. Yoga (Seriously, what isn’t yoga good for?)
    What it is: an ancient practice that links physical exercise with breathing and mindfulness
    Why it might help: Research shows that yoga has a profound effect on our physiology, including our cognitive function and our ability to deal with anxiety. Some of the benefits are undoubtedly associated with the increase of oxygen to the brain but yoga has such significant benefits over other forms of exercise that it’s clear they’re only scratching the surface of what’s going on inside us when we practice it.
    My experience: I’ve written before about the profound impact yoga has had on my ability to deal with treatment and my recovery. The benefits have ranged from helping me to deal with anxiety and pain to preventing nausea. Yoga helped me to restore my energy when treatment drained it and played a big part in my recovery from surgery thanks to my physical strength and flexibility.
    If you don’t find yoga appealing then exercise will also help you to recover your brain. I just don’t think it will achieve this as quickly or as well as yoga.
  3. Mindfulness
    What it is: a practice of focusing on the present moment and doing one thing at a time. Some people use meditation to learn mindfulness and others learn it by just focusing on whatever they are doing right now.
    I use both. Mindfulness for me includes listening to recorded meditations on my iPod and paying close attention to whatever I’m doing during the day. Even the washing up can be a meditation.
    Why it might help: Mindfulness trains your brain to still the ‘monkey mind’ that jumps from one thing to another. It also helps to reduce anxiety which might be a major contributor to cognitive impairment.
    My experience: Mindfulness has helped me to stay calm and to be present. My mind functions better when it’s calm.
  4. What you put in your mouth
    What it is: Attention to good nutrition, good hydration and avoiding those things you know aren’t good for you.
    Why it might help: Food and water are fuel for our bodies and the functioning of our bodies is directly linked to the quality of that fuel. We know that children show huge cognitive improvement when their diet is improved and that it also has an impact on mood and behaviour. Recent research into the addition of fresh vegetables into the diets of older people also demonstrated improved cognitive function. We are what we eat.Water is also critical to healthy brains. I noticed in hospital that my low blood pressure was immediately remedied by drinking a glass of water and our brains rely upon a good blood supply to function.

    Avoiding those things we know are unhealthy, including alcohol, highly processed food and high sugar food will also have an impact on our brains. People with allergies and food sensitivities will know that a small change in diet can mean a big improvement in health.

    My experience: My diet was pretty good before I was diagnosed. It’s even better now. I’ve significantly reduced all of those things I know are unhealthy while still allowing for the occasional treat. We predominantly eat organic food and I cook from scratch. I’ve cut right back on gluten after I noticed (thanks to The Fast Diet) that it made me tired and bloated. I still need to work on drinking enough water every day but I’ve improved on that score too. It comes as no surprise to me that the better I eat, the better I feel.

  5. Iodine Supplements
    Regular followers will know that I’d rather get my nutrition from food than supplements but based on my own research and an examination of my diet I determined that there was a possibility that I was iodine deficient. I don’t eat a lot of fish and while dairy used to be a good source of iodine, changes in farming practices mean it’s no longer used. The clearing of the fog has coincided with the introduction of iodine into my diet so it’s worth considering. Please let me know if you have similar results. As always, I strongly recommend you discuss any supplementation with your medical team, particularly if you’re in active treatment.
  6. Sleep
    Sleep is the great healer. When I was in treatment it was common for me to sleep in excess of ten hours a day. As my health has improved my need for sleep has declined but I still regularly get eight hours. Sleep is such an important part of recovery that I’m dedicating all of my next blog post to it.

Here are some other things you might like to try:

  1. Learning a language or a musical instrument
    If you’ve read any of the recent research into neural plasticity you’ll already know about this one. It’s long been thought that the only time when the brain was ‘plastic’ and able to create new neural pathways was during early childhood. Now it’s clear that we can keep building new connections in our brain for the whole of our lives. The quickest and most effective way to do this is to learn something new. Languages and music are particularly good, but learning anything new will help. A number of people have told me they’re finding ‘luminosity’ (a web site that charges you a monthly fee to play ‘brain training’ games) very helpful. You could also try puzzle books or free online puzzle sites.
  2. Get creative
    Creative pursuits are good for your brain and your mood. Pick something you really enjoy and dedicate a bit more time to it. It might be gardening or scrapbooking or making furniture out of scrap wood. It really doesn’t matter what you choose as long as it gets you making lots of happy choices. There’s a huge surge in the popularity of colouring in books for adults at the moment. I wish these had been around when I had chemo. They’re very relaxing and great fun, combining creativity with mindfulness.
  3. Take a holiday
    A break from your usual routine can be good for your brain. It doesn’t need to be expensive or involve air travel. It might just be a weekend visiting a good friend. The aim here is to find something restful and calming. If the thought of packing a bag and going anywhere makes you anxious then stay home.
  4. Have a cuddle
    Not that anyone needs an excuse, but cuddles are good for your brain. They increase oxytocin levels and this helps you to feel calmer and happier. You can cuddle a person or a pet. You can cuddle a partner a friend or a child.
  5. Have a massage
    It’s a combination of cuddling, mindfulness and increasing oxygenation. It’s the triple whammy of treatments when it comes to helping you restore cognitive function. You can also credit it with reducing anxiety, giving you a break from your routine and helping you to feel good about your body. There are now massage therapists that specialise in treating people going through or recovering from cancer treatment, so look up ‘oncology massage’ and treat this as a necessary part of your recovery (rather than an occasional treat).

Finally, don’t give up. There’s no upper limit to how well we can be. Recovery from chemo brain is certainly possible and most of the things that help us to achieve it are things we should probably be doing anyway.