Back Burning

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The last few weeks have been all about bush fires on the east coast of Australia. My husband is a volunteer fire fighter and he’s spent some of that time back burning in the Blue Mountains. This is where the phrase ‘fighting fire with fire’ comes from. Fire fighters move to areas ahead of the fire front and deliberately  burn out the undergrowth in the path of the fire, or in areas where it may spread. There is still damage to the bush and to wild life, but the hope is to stop the fire by depriving it of fast-burning fuel. The large trees survive.

The process reminds me of chemotherapy. You do something deliberately destructive in the hope of preventing something worse.

For those that don’t already know, chemotherapy involves filling your body with something toxic that kills off fast replicating cells. It’s almost certain that in the future they’ll develop better ways to specifically target cancer cells but, for now, the best option for some cancers is to knock out anything that reproduces quickly, including healthy cells. That’s why your hair falls out. Hair cells grow quickly. So do skin cells and the cells that line your digestive tract.

If the strategy goes to plan, the healthy cells are replaced by my body and the cancer cells are wiped out.

Sometimes back burning goes horribly wrong and actually causes serious fires. The same thing can happen with chemotherapy. There are risks of serious side effects. A head cold can kill you because white blood cells, the ones that protect you from infection, are fast replicating. Chemotherapy also carries the risk of permanent heart damage and there’s a risk of leukaemia ‘months or years after treatment’.

There’s also a risk that you don’t wipe out all of the cancer cells and the remaining ones are now resistant to the chemotherapy and therefore more aggressive than the ones you started with. Triple negative cancer metastasises all through the body. A more aggressive form of an already highly aggressive cancer is not a happy thought.

The trouble for people with this cancer is that doing nothing is not really an option. My tumours doubled in size inside four weeks. It’s reasonable to assume that without any treatment I would be dead inside a year (probably six months). Having chemotherapy to target those tumours prior to surgery is now considered to be the best strategy for triple negative breast cancer. If I can achieve a full pathological response (no tumours) before I go in for surgery then my five year survival rate improves by about 10%. That puts me in the same category as other breast cancer patients.

So I accept the risks and the collateral damage in the hope of extending my life. Back burning.

There is one phrase that helps me more than any other:

I WILL CROSS THAT BRIDGE WHEN I COME TO IT

You wouldn’t be human if your mind didn’t drift down the dark alleys of frightening possibilities, but this phrase pulls me back to the present. There is no merit in dwelling in that darkness. It will not make me wiser or better prepared.

There are times when not building a comprehensive picture of all the possible outcomes in my mind is a good thing. What I need now is distraction and avoidance. It’s against my nature. I’m usually the kind of person that likes to think things through. One of my greatest challenges has been to just let go of the things I can’t control. I can cross those bridges when and if I come to them. For now I need to focus on what I can control.

I can control what I eat, what I think, and how well I take care of myself. I can control the extent to which I follow the instructions I’ve been given and the amount of exercise I get. I can make decisions about meditation, relaxation and sleep. I can decide to prioritise my health over everything else.

I’m much better at taking care of myself now that I have a solid appreciation of the stakes. I am temporary. We are all temporary. Some of the things that make us temporary are beyond our control but many of them aren’t.

I’m not doing anything extreme. My body is going through enough with chemotherapy. My approach is to do what I can to reduce any other toxins from entering my system and to nourish my body with good food and good habits. There is, of course, the lingering questions about why it took cancer for me to realise how important it was to do this.

I am feeling well. I’m about a third of the way through my twelve weekly doses of paclitaxel and I’m looking and feeling healthy. I’ve now got a fine fuzz of what looks to be white hair. The rose hip oil I’m using on my skin has done a better job of reducing fine lines, wrinkles and age spots that any expensive chemical concoction. Of course any concern I ever had about looking my age has evaporated but it’s a small bonus.

I’ve already had the wonderful news that three of my tumours are gone. Last week the tumour site kept pulsing and aching. A good sign according to my oncologist. This week it’s a dull ache and I’m hoping that means the primary tumour has taken a big hit.

Over the next few months we’ll see what we always see after a bush fire. Large trees will sprout fresh, new growth along their trunks and branches. For a while they’ll look like they’re covered in green fur. The surviving animals will return and rebuild. The blackened trunks will remain as evidence that fire came through here but the bush will come back.

I hope my body echoes that regenerating ability.

I hope my cancer doesn’t.

And if it does?

You know which phrase goes in here.

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Does This Cancer Make My Bum Look Big?

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There’s a lot of stuff written about women and body image. It seems to me that it’s all ironic: while women are writing about body image, good or bad, they’re also perpetuating the obsession with body image. At the risk of adding to the irony, here’s my take on body image.

Look how you want to look. Wear what you want to wear. Stop judging others by their appearance. Value people for their kindness, or their intellect or their humour.

Stop telling little girls (or little boys) that they are pretty and start asking them what they think about something instead, or which book they’re reading, or what sport they enjoy playing.

It’s okay to express your opinion about your own body but mind your own business about anyone else’s. For example, “I choose not to have cosmetic surgery.” rather than “Nobody should have cosmetic surgery.”

Love your body. Without it you are nothing. Care for your health. Not to meet some arbitrary standard of beauty, but because your health is what sustains your body, and without it you are nothing.

That’s about it really.

I don’t worry about what famous people are doing with or to their bodies. I remember reading a piece by a 50-ish writer about how she was angry with a whole group of middle aged celebrities and actors for having cosmetic surgery and, in doing so, placing unwelcome pressure on her to do the same. It was a funny, well written diatribe but, even before I was diagnosed with cancer, it struck me as hypocritical. You can’t go on about wanting to be valued for your intellect, your humour, your compassion and your strength if you’re obsessing about how Cate Blanchett’s suspected eye-lift has undermined your confidence. Really?

I’m never bothered by what famous women do to themselves, other than being grateful that I don’t work in an industry where my personal appearance is so important that I’d let someone cut into my body. There’s a lot of banging on about the ‘message’ they send. The message I hear is that personal appearance is much more important if you want to be a celebrity than it is for anyone else.  I don’t aspire to be famous. I think having your private life (or someone’s made up version of your private life) printed in magazines is a special kind of hell. The idea of not being able to leave my home without being recognised appalls me.

I’ve known since I was a teenager that there’s only a very tiny number of women considered suitable for modelling, and most of them are made up and digitally enhanced beyond recognition. If you saw them in public you’d probably think they were a very tall, very thin woman but you wouldn’t necessarily find them beautiful. It never bothered me that a Vogue talent scout was unlikely to stop me in the street. I always thought modelling would be a very boring job with a short life span. I wanted to do something worthwhile with my life and spending it as a human coat hanger just didn’t cut it.

On the day I received my diagnosis, my husband said this to me:

“You are not your breasts. I want you to know that the most important thing to me is that you survive this. If you need to lose your breasts to do that then so be it. I love you. That’s not going to change.”

Beautiful.

I’d independently had exactly the same thought. I imagined myself with what I would call my ‘dolphin chest’, all smooth and sleek. I recalled my friend, Jo, who talks about how she looks at her mastectomy scars as evidence of a life-saving operation. She cherishes her scars, her body and her survival. I told my surgeon that my priority was best medical outcome and that any cosmetic consideration was secondary. If I needed to have both of my breasts removed to live, then I would do that.

Turns out I don’t need to. I’m not even going to lose the cancerous breast. I had my planning session with my surgeon last week for surgery in January 2014. Now that three of my tumours have vanished and the fourth looks like it’s on the way out, she’s planning on breast conserving surgery. I’m lucky because the cancer is in my naturally larger breast so she’s confident of a good cosmetic result. It’s possible I’ll get a breast lift as a bonus. Okay. Excellent news. I like my breasts and keeping them is definitely better than losing them. I’m still okay with losing them at some point in the future if that’s what I have to do to stay alive.

Since Angelina Jolie’s famously public double mastectomy there’s been a lot more acceptance of this option for women with a high genetic risk of breast cancer. Curiously, it’s not always the case that taking away your breast tissue will provide you with the lowest chance of recurrence. My surgeon tells me that taking the breast off makes no difference to my survival odds. She also tells me that there may be an advantage in having breast tissue; triple negative cancer has a high rate of recurrence and a tendency to metastasise somewhere else in the body. There’s a possibility that leaving breast tissue means that it’s more likely to appear there, rather than in a vital organ. It’s much easier to treat breast cancer when it’s still in a breast.

I’ve never been particularly vain. I’m not ‘high maintenance’ and I’m married to a man that thinks I look beautiful without the assistance of makeup, hair product, expensive clothing or uncomfortable shoes. I save dressing up for special occasions and he makes the appropriate complimentary noises when I do, but he’s inclined to grab the camera and photograph me when I’m out in the garden in my unflattering sun hat, wearing a man’s shirt for protection along with practical cargo pants. He says he likes having pictures of me looking as happy as I do when I’m gardening.

I adore him. Gentlemen’s Quarterly are unlikely to use him as a model but I love every inch of him. He is, simply, the most attractive man I know. You might not think so, but then you need to apply my standard for ‘attractive’ to understand what I mean.

My standard for attractive, whether we’re talking about men or women, is a simple one:

1. Attractive people are healthy. They don’t need to be rake thin but they’re not obese either. They eat healthy food most of the time and it shows. They also enjoy ‘sometimes food’ some of the time without being guilty about it. They enjoy staying fit. They have a vitality about them that’s appealing, regardless of their genetic inheritance. They don’t subject themselves to fad foods and diets.

2. Attractive people smile most of the time and laugh easily. Everyone describes themselves as having a good sense of humour but attractive people will be described this way by their friends.

3. Attractive people are kind and generous. It doesn’t matter how lucky you were in the gene lottery, if your unkind, greedy or mean you are not attractive. Attractive people tread gently on the planet. They stop the car to move an animal off the road. They minimise their environmental footprint. Their kindness and generosity is not limited to humans.

4. Attractive people have good personal hygiene. Yep. There’s no way around this one.

5. Attractive people are interesting. The use their minds. They know about all kinds of things and they’re happy to share their knowledge. They’re also interested in you.

6. Attractive people are positive. They talk about what’s good, possible, worthwhile, healthy, constructive and beautiful. They spend much less time than most of us talking about illness and pain, or complaining. They don’t gossip about other people. They look on the bright side.

7. And finally, attractive people are comfortable in their own skin. They don’t obsess about their appearance. They aren’t anxious about the size or shape of any particular part of their body because it’s all their body and they know that it’s the only one they have. Hating it means hating themselves.

When I want to work on being more attractive, this is the list I use. I don’t think wrinkles or grey hair or weighing ten kilos more than I did when I was thirty have anything to do with how attractive I am.

There’s a whole industry out there that tries to make us feel bad about our appearance in order to get us to spend money. But we don’t need to pay attention to their messages. If you don’t read ‘women’s magazines’ (really just endless advertisements) or spend too much time in front of the television then this stuff can’t touch you. If you surround yourself with people that appreciate you then the temptation to see your crows feet as a crime against the state will vanish.

I love my body. Right now I love the way my body is fighting cancer, coping with chemotherapy, enjoying yoga, making food and words and gardens and paintings. The last time I loved my body this much I had given birth to my daughter. My belly was stretched from pregnancy and it insisted on forming a loose bag of flesh beside me on the bed. My breasts were swollen and tender. I looked at my baby girl and thought, “I made another human with my body!” Now I look at my slides and check, over and over, that the three tumours are gone. I feel the dull pain of the remaining tumour caving under the impact of my excellent cancer drugs. Wonderful. Go you good thing.

Does my bum look big? I have no idea.

Cautiously Optimistic

I’ve had three rounds of FEC chemotherapy (once every three weeks) and three rounds of weekly paclitaxel (which will continue for nine more weeks).

This morning I had an ultrasound to check progress.

Only my largest tumour remains.

The other three are gone.

The remaining tumour looks unstable.

My husband describes his response as ‘cautiously optimistic’.

I’m so happy I want to hug random strangers!

Yes, yes, I know I’m not there yet but I am definitely celebrating this progress.

Onwards.

Let’s break out the Chinese martial arts movies, and something with Arnie battling satan, and maybe some cool anime. Yep. We need some butt kicking inspiration!

 

Once Upon a Time

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Stories are learning forwards. A lot of what we learn today starts with a concept and works backwards. Stories take you on a journey that ends with a different kind of knowledge. Writing your own stories works like this:

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Once upon a time there was a gardener. She was also lots of other things; a mother, a wife, a daughter, a friend and so many other labels, but ‘gardener’ was how she thought of herself in that quiet place at the centre of her heart.

She lived on the side of a hill with deep topsoil and temperate weather where she had transformed an old horse paddock and a weed infested remnant of bushland into a place where fairies came to live. There were tall trees that she had held as tiny sticks, tucking them into the rich soil with a bucket of water and a kiss. There were places for food and places for flowers. The weeds were cleared away from the bushland and the wild animals lived there now. Sometimes they visited the garden and ate the flowers, but the gardener didn’t mind at all.

The gardener had never been anywhere to learn her craft. She had let the garden teach her. She had been brave enough to fail, over and over again, so that she could learn the rhythms and patterns of this particular piece of earth and how to work in harmony with it. She knew that a weed was just a plant that worked against the garden. In another garden it might have been a treasure, but left alone it would overwhelm her other plants and reduce her diverse and complex pattern to a single, voracious species. She knew that weeds needed to be dug out, covered over or, when nothing else worked, poisoned.

One day the gardener discovered she had a kind of weed growing inside her body. The seeds for the weed had come from her own cells. Something had damaged them and instead of growing as part of her delicate, complex, internal garden they were threatening to kill her. Because the weeds were buried deep inside her body she couldn’t dig them out. She went in search of a wizard.

The wizard told her that even if the weeds were cut out there was a very strong chance that they would grow back. The gardener knew about this kind of weed. In her garden was something called ‘trigger weed’ that threw tiny seeds in all directions the second you touched it or tried to pull it out. The wizard told her that the only way to treat the weeds in her body was with a slow acting poison. There was no guarantee that the poison would work, or that if it did work that the weeds would stay gone forever, but it was the gardner’s best chance.

Knowing the way of wizards she asked what the poison would cost her. The wizard told her she would have to pay with her energy, her appetite, and her peace of mind. The wizard warned her that, in time, there was a chance she may have to pay with her health. Then the wizard asked for her hair.

The gardener had never been a particularly vain woman but she was shocked. What would the wizard want with her hair? Still, she knew she had very little choice. Everything she could find about out about the weeds inside her body told her that the wizard’s poison was her best hope at life. Without the poison she would surely die. She handed the wizard her hair.

The gardner took the wizard’s poison over many weeks. From time to time the wizard would return and ask for more hair. Her leg hair, her toe hair, and any other hair on her body. Finally the wizard asked for her eyebrows and her eyelashes. Sadly, she handed them over. Then she said to the wizard, “All these weeks you’ve come here and taken my hair. What do you want it for? Why do you need it?” The wizard replied, “I’m a gardener, like you. I need the hair to grow the Yew trees that make the poison to kill your weeds.  I need it to fertilise my roses, which I grow to bring beauty into the world.”

The gardener continued to take the poison and slowly, slowly, the weeds inside her body started to die. As the wizard had predicted, she had days when she felt very ill and all she could do was to sit by the window and look at her garden. She had days when she felt slightly better and she could sit outside in her garden and look at the flowers and the weeds. Some days her energy returned enough for her to pull a few weeds or trim back some dead flowers and on really good days she even managed to plant food for next summer and to start a mushroom patch under the mulberry tree. No matter how sick she felt, her garden would lift her heart and restore her spirit.

When she looked in the mirror she didn’t recognise herself. With all her hair gone she looked so strange, like a lizard woman with cold, blue eyes. Sometimes she would be sad about the weeds in her body and the need for the poison and the odd, bald creature that she had become. Then she would think about the wizard’s beautiful roses and she wouldn’t mind at all about her hair.

She promised herself that when her hair grew back she would plant a Yew tree and that every time she cut her hair she would feed it to the tree.

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It’s difficult for me to explain how stories work for me. I suppose you either relate to this approach or you don’t. For me, it’s a gentle way to shift my thinking and my mood. There’s a bit of whimsy in it. It makes me smile.

For those that don’t already know, the chemotherapy drug, Paclitaxel, was originally synthesised from the bark of the Yew tree.

Live Like You Have Cancer

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Imagine if today was the day you discovered you have cancer.

What would you do? What would you change? How would this discovery shift your priorities?

Initially, you’d probably go into shock. You’d get upset or angry. You’d spend a couple of days sailing the adrenalin and the cortisol that accompanies something frightening. Everything would seem brighter. Clearer. You’d finally understand what compels people to return to extreme sports. It’s this afterglow that accompanies anything truly terrifying.

You’d land about a week later and have to deal with reality. You’ve got cancer. It might kill you. What now?

Most people spend some time thinking about how they got cancer. There’s nothing like a threat to your life to make you reassess the way you live it. If you’re one of the few remaining smokers this is probably the point at which you throw away your cigarettes. If you’re a social drinker you might be shocked by your doctor’s advice that alcohol is just as bad for you as cigarettes. You might decide to stop drinking. Or you might go out and buy a carton of cigarettes and a carton of your favourite grog and get stuck right into it. What the hell. You’ve got cancer anyway.

You might finally realise that being a healthy weight is important. Obesity is a major cause of cancer and the long road to gradual, healthy weight loss is nothing compared to the long road of surgery, chemotherapy and radiation therapy, assuming you’ve caught your cancer early enough to still have any of those options available to you. It’s possible you’ll achieve a whole new perspective on what you put in your mouth, and how much you eat. What isn’t nutrition is garbage that your body has to process and right now you want your body to be killing cancer.

Or you might just eat out the biscuit aisle and stock up on junk food. What the hell. You’ve got cancer anyway.

If you found out you had cancer you might become a bit obsessed with labels and getting rid of anything toxic from your life. Your bathroom cabinet could suddenly become a clean, shiny, thing of beauty as you consign anything with ‘parfum’ or ‘sodium laurel sulphate’ to the bin. Lipstick? Don’t need the lead right now. Face cream? Does my skin really need those 23 polysyllabic ingredients? Look good or stay alive? Who says you can’t do both? Out goes the hair dye, the nail polish, the poisonous body lotion along with a bucket full of chemical that you use to ‘clean’ you home. In comes the organic rose hip oil, the toxin free soap and the bicarb of soda.

Or you might just empty the whole lot into the bath and roll about in it. What the hell. You know the rest.

When you discover you have cancer your life is supposed to flash before your eyes. It seems to me that is doesn’t so much flash as trickle. You’ll almost certainly find yourself doing an audit on the whole of your life so far and sorting it into things you’re proud of, things you could have done better, unfinished business and things you hope nobody ever knows about. You might decide to ring people and say ‘thank you’ or ‘fuck you’ or ‘I just needed to say…’ You might look around you and decide that your life is really wonderful and you are deeply grateful for all the people in it, or you might decide that some changes are needed. It’s a rare person that changes nothing. After all, this is cancer and now you are face to face with the inevitability of your own impending death. If this is all there is, how do you feel about that?

You might decide it’s time to figure out what your true purpose is in life, if you haven’t done that already. You might think about your impact on the planet, become active in a cause you care about, donate generously to a charity that matters to you or rewrite your will to include a legacy. Or you might decide not to bother with the recycling. You might start saying ‘yes’ to the plastic bags at the supermarket and trade in your economical car for something big and grunty. You just don’t know what you’ll do when you get a cancer diagnosis.

You’ll find doctors, research your illness, figure out your odds and hit the internet for the complex porridge of research, superstition and scare mongering. You’ll learn a lot about cancer very quickly. Your knowledge will help you to make decisions about what kind of treatment you’re going to have, or not have. It will help you to understand what kind of things you can do to support your treatment, improve your odds and maybe, just maybe, beat cancer.

In the course of your research you’ll discover that we know a lot more about cancer than we have at any time in human history. Humans do this with everything. We keep asking and searching and researching and our body of knowledge grows exponentially. What your research or your doctor might tell you is that a lot of what we used to think about cancer has now been revised. We used to think that cancer was caused by a single, deformed cell that lodged somewhere in the body, tricked the body into giving it a blood supply and then grew into a tumour. Most of that is still considered correct, but what we now know is that everyone has cancer cells circulating their bodies. Scientists have used man-made and natural disasters to do research that proves that all of us (even you) have cancer cells inside us all of the time.

There’s a war going on inside your body. The cancer cells are trying to trick the healthy cells into accepting them as normal. The healthy cells are recognising that the cancer cells don’t belong and they’re killing them off, or just ignoring them and waiting for them to die. One of the exciting areas of research for fighting cancer involves studying a process called angiogenesis. It’s the process that a cancer cell uses to build the blood supply that allows it to grow.  Here’s an excellent TED talk on this subject;

You can probably see where I’m headed with this.

We all have cancer.

You have cancer.

It seems to me that it’s a good idea to live that way. Make the decisions now that you would make if you received a cancer diagnosis. Don’t wait for the tumours to form. Decide to change the things you can to improve your survival odds and your quality of life. Make the changes you need to make to have the life you want to live. End the destructive relationship. Find employment that plays to your strengths and provides you with opportunities to learn. Break out the good silverware. Don’t get caught up in building wealth when what really matters is living life. Play. Laugh. Spend more time enjoying relationships and less time accumulating stuff. Love your body and treat it like the most valuable thing you have.

Because it is.

Live like you have cancer.

Because you do.

Lies, Damn Lies and Statistics

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A national chain of restaurants used to issue discount vouchers on the back of supermarket receipts. Over time, they found they had more success offering ‘one free main meal’ than offering ‘15% off the total bill’, even though the total bill reduction usually amounted to a much larger saving for the customer. Their conclusion was that most people couldn’t easily calculate 15% of a potential bill, but they had no trouble understanding ‘free meal.’

If you like a bargain you’ve probably got a quick method for calculating percentages, and it’s made easier by retailers sticking to simple numbers. We know that 50% of something is half, 33% is roughly one third, 25% is a quarter and 10% is a tenth. Anything else and we look at the price, move the decimal point one place to the left to give us 10% and then double it for 20% or triple it for 30%. Or we just go with the notion that any discount is better than no discount and the higher the percentage the better the deal.

It turns out I was wrong, as I sat in my high school maths class and audibly rolled my eyes wondering how percentages were going to be the least bit useful to me in the real world. Percentages matter. Particularly when you get cancer.

Cancer involves a lot of difficult choices about treatment. Everything comes with side effects and risks. It’s easy to get terrified. If you can’t get your head around percentages that terror can be paralysing.

Some people take the ‘ignorance is bliss’ approach. They place themselves in the hands of their doctors and hope for the best. I have an enormous respect and admiration for the majority of people in the medical profession but I also recognise their human limitations. People make mistakes. They get tired. They can’t always keep up with all of the current research. If you think about the number of patients most of these people see in the course of a day, a week, a month, it gives you an appreciation of their wonderful memories and their obsessive note taking. I’m more of a ‘knowledge is power’ kind of person. I want to be actively involved in my treatment. To ask intelligent questions and to make informed choices. I know that ‘what happens next?’ and ‘can we book that in today?’ are both good questions.

But oh those statistics! Let’s see if I can hose them down.

The first thing you learn about triple negative breast cancer is this phrase: “A poorer prognosis than other types of breast cancer.” Pause for a crying break. Contemplate mortality. Settle down and find out what that actually means. It turns out that ‘poor prognosis’ means you’re looking at a 75% five year survival rate.

To start with, you get your head around the five year survival rate. Figures for cancer are expressed this way because your chances of having a relapse are much higher in the first five years. The longer you stay cancer-free, the better your prognosis. If you make it to 10 years without a relapse your life expectancy is about the same as anyone else. You can start worrying about heart attacks and strokes like the rest of the population! The point about the five year figures is that it helps to remember that these are your worst numbers, and they improve over time.

The other thing to remember about five and ten year figures is that a relapse isn’t a death sentence. A relapse means a new set of statistics that will, understandably, be more frightening than your original numbers, but there is still a survival rate.

75% means I have one chance in four of being dead inside five years. It also means I have three chances in four of being alive. That’s the raw statistic. Initially frightening but from my perspective, worth knowing. When I’m feeling a bit slack about looking after myself, ‘three chances in four’ is a serious motivator.

But I think we can immediately improve on 75%. In order to give you a five year survival rate, doctors need to use data from people that have already survived five years. Makes sense. What this means is that you’re looking at numbers from people that received treatment five or more years ago. All over the world, and in Australia in particular, there have been impressive improvements in cancer treatment in the last five years. It’s fair to expect that when triple negative patients get their statistics in five years time our survival rates will have been better. I think it’s conservative to say at least 5% better. That moves us up to 80% without even trying. Eight out of ten or four out of five. So already we’ve improved on the original statistic.

Remember whenever you hear medical statistics that they are always historical. In an environment where technology and medicine are advancing at a cracking pace that’s important information.

It’s possible to massage the 75% by adding in your own circumstances. This number reflects all cases of triple negative breast cancers. It doesn’t usually get detected early and, in many cases, people already have a tumour in another part of their body at the time of diagnosis. It’s very aggressive and spreads quickly. If you’re fortunate enough to have it contained to the breast, as I do, then your odds improve. The sooner you catch it the better. You can also figure into survival rates your general level of health, your lifestyle and the other things you do to improve your odds. The 75% figure includes people that were smokers, drinkers, over eaters and drug users. It includes people with underlying conditions that impacted upon their treatment and people that opted not to have any medical treatment, or chose alternative over mainstream. All of these are factors.

The strong message from these statistics is that everything I can do to support my treatment and improve my health will help to improve my odds.

One of the biggest changes to the treatment of triple negative breast cancer has been neo-adjuvant chemotherapy, which I’ve been having. It involves having chemotherapy first, before surgery. The advantages include immediately treating the whole body for any cancer cells. It turns out that we all have cancer cells wandering our body all the time. Even people that haven’t been diagnosed with cancer and never will be. Everyone. The reason those cells don’t develop into cancer is that our body recognises them as deformed and kills them. At some point a cancer cell manages to evolve in a way that turns off the flag that marks it as foreign, and our body gives it a blood supply to help it grow. A tumour is born.

Having something in your system that targets not only your tumours but any other highly aggressive, notoriously metastasising cancer cells is a good thing. If I’d had surgery I would have had to wait at least four weeks for chemotherapy and there’s a chance the cancer could have already laid down another tumour in that time.

It’s also reasonably common for triple negative patients to develop another tumour in their scar tissue if they have surgery first. There’s a view that because surgery disrupts the blood flow to the tumour site it may make it more difficult for chemotherapy drugs to target any remaining cancer cells. The other advantage of neo-adjuvant treatment is that doctors can see if the cancer responds to chemotherapy and whether or not the tumours are shrinking. Triple negative isn’t one cancer. It describes a group of cancers that share a common characteristic. Once the tumours are gone, chemotherapy becomes ‘best guess’. With neo-adjuvant treatment you can see the impact, and hopefully completely melt the tumours prior to surgery. Fingers crossed.

This treatment improves the odds of triple negative patients. Research from the UK is finding that around 40% of patients receiving this treatment achieve full pathological response. That means their tumours are dead and surgeons remove the surrounding tissue just to check. For these patients, their survival rates are the same as patients with other forms of breast cancer (currently close to 90%). Fingers and toes crossed.

I think it’s also important to view your statistics in the context of overall life expectancy. As a 51 year old Australian woman the average life expectancy is around 30 years. I know that some people find staring death in the face an odd way to stay positive but this number puts everything in context for me. I was never going to live forever.

Hopefully that’s given you a better understanding of how the survival rate statistics work, but the real quagmire comes when you start looking at the treatment statistics. Depending on who you ask, or what your read, mainstream cancer treatment is either leading edge medicine or brutal experimentation with lousy outcomes. It reminds me of being pregnant; you will hear horror stories. I find statistics very useful when sorting through this barrage of information, misinformation and conspiracy theory. First some basics:

Cancer is not one disease but a whole group of diseases that have some things in common. They all occur at a cellular level and they all involve a deformed cell attracting a blood supply so that it can grow and possibly spread. Statistics that apply to one kind of cancer do not apply to every kind of cancer.

Chemotherapy is not one kind of treatment but a broad description for a type of treatment that involves using drugs to target all of the cells in your body that reproduce quickly, including your healthy cells. Cancer cells reproduce quickly but don’t recover easily from chemotherapy. Healthy cells do. Statistics that apply to one type of chemotherapy to do not apply the every type of chemotherapy. Statistics that apply to the treatment of one type of cancer with chemotherapy do not apply to any other type of cancer. As a simple example, the aggressive nature of triple negative breast cancer means it responds better to chemotherapy than other, less aggressive forms of breast cancer.

Radiotherapy statistics are also complicated. This is an area of medicine that has benefited enormously from advances in computer sciences. What used to be a therapeutic ‘blunt object’ now uses three dimensional targeting and computer imaging. Statistics for radiotherapy need to be considered in this light.

Finally, there is not one kind of surgery and the skill of a surgeon is a major factor in these statistics. I think the best recommendation for a cancer surgeon is that they have a reputation for only needing to operate once. I’m not talking about relapse here, but people having to go back into surgery within weeks because it’s clear from the biopsy that something was left behind. I want a surgeon that’s going to get it right the first time. Not all do and this influences the overall statistics.

Your doctor has access to data bases that help to calculate the possible impact on your survival rate of various types of treatment. I like these numbers. All of these treatments have side effects and risks. In some cases those risks are life threatening. Without some data you can be left feeling as if you’re jumping out of the frying pan and into a volcano. So, keeping all of the above qualifiers in mind, here’s my numbers and what I get from them:

What happens if I do nothing? This is always my first question regarding any medical treatment. It turns out that for triple negative breast cancer the five year survival rate with no treatment at all is around 46%. That’s better than I thought it would be. A good way to think of anything close to 50% is that it’s a coin toss. For me, that’s not a great survival rate.

How does chemotherapy improve that? Based on the historical data, by 16%. That’s lower than I thought it was and hopefully that number will get much higher as the neo-adjuvant data kicks in, but even without that, 16% is a significant improvement. I think of it as a lottery with 100 tickets in it and first prize is my life. I’ve already got 46 tickets (survival rate if I do nothing). Would I like another 16 tickets? Before I make that decision I want to know what’s attached to those 16 tickets. One of them comes with a possible long term risk of leukaemia or heart trouble but when I look at my age and my overall life expectancy I’m still prepared to take that chance, given that all 16 tickets improve on my coin toss of a cancer. Chemotherapy isn’t for everyone. For some people the risks outweigh the benefits. Information helps you to be comfortable with whatever decision you make.

I apply the same kind of thinking to radiotherapy and the risks associated with that. The difficulty with assessing radiotherapy is that until I know how the chemotherapy and surgery went, I won’t have enough information to apply specific statistics. The more invasive the cancer, the stronger the argument for radiotherapy. At the moment I’m assuming best case scenario and even on those statistics it’s looking like a good idea. The other complicating factor with radiotherapy statistics is that some people’s odds have already been affected by chemotherapy and some haven’t and your age also affects your chances. Younger women have a higher chance of cancer coming back than older women. You can see why I call it a quagmire.

It’s useful to look at general figures for radiation. The chances of cancer coming back for a woman that has a lumpectomy without radiotherapy are 36%, but with radiotherapy that reduces to 17%. If the cancer had spread to lymph nodes then the chances of the cancer coming back rises to 44% and the chances are reduced by radiotherapy to 9%.

Like chemotherapy, radiotherapy includes some serious long term risks. There’s a 1% risk (one chance in 100) of getting another kind of cancer within 10 years. There’s also a risk of heart attack that peaks at around 25 years. I’ll run my lottery ticket analogy again. If I add radiotherapy into the mix I can now have around 90 of the tickets in a lottery of 100 tickets where the first prize is my life. One of those tickets might mean fighting another cancer battle and I’m okay with that. One of them might mean a heart attack at 75. I told the radiation oncologist that if I have a heart attack at 75 I’ll send him a thank you card! He’s promised me flowers in return.

I hope all of this helps people make informed decisions about treatment. My strong recommendation is to ask all of your treating doctors for data and take a pen with you to write it all down. Some of the information might seem terrifying but once you get your head around it there’s some positive stuff in there. Importantly, it helps you make decisions about your treatment that you’re at peace with. Perhaps the greatest hell for anyone with cancer is second guessing your choices. What if…..Should I have……..If only I’d known……….  When doubt sets in it really helps to know that you took the time to take everything into consideration; the general statistics, your personal statistics, your own attitude to risk and complications and your comfort level with any form of treatment.

I’ve opted for everything mainstream medicine can offer me, supported by complimentary treatments. Some people choose to have only some forms of treatment or none at all. I respect everyone’s right to make their own choices while encouraging them to do the research to ensure that those choices are informed. ‘Trust your instincts’ is lousy advice. My instincts have often led me down dark alleyways to be beaten up by circumstances that a little critical thinking could have avoided.

Finally, the statistics remind us that we are much more likely to survive breast cancer, even triple negative breast cancer, than to die from it. And that’s a really good thing to keep in mind.

Three Things for Maintaining a Good Relationship

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My husband and I celebrated 10 years of married life last week.

For both of us, this is our second marriage. We were both mostly-happily single when we met and were both looking for something occasional but monogamous. It was Graham that decided we should get married. When he asked me, my response was ‘Why?’. He said, ‘Lately when I talk about you to other people I find myself wanting to refer to you as my wife.’

Good answer.

He’s very good at using very few words to say a great deal. As you can see.

I think second marriages are either an exercise in making all the same mistakes that you made the first time around, usually because you attributed everything that went wrong with your first marriage to your ex-spouse and didn’t take any responsibility yourself, or they’re an exercise in figuring our what you did wrong the first time and making sure you improve on the past.  Fortunately for us, we chose option two.

To celebrate, we decided to get a ferry to a local restaurant. We share a fondness for ferries and a love of fine food so this was the perfect choice. We arrived at the ferry wharf with plenty of time for a stroll and a coffee. We sat on a bench at the beach in the sun watching a pair of eagles steal fish from the seagulls and pelicans. It was a glorious day.

Until two people decided to have an argument about three metres from where we were sitting.

Oh come on! There’s a whole beach! A whole suburb! And no other vacant seats for us to move to. We couldn’t hear what they were saying. Just his hushed tones and her increasingly distressed, emphatic staccato. I looked over to see the woman get a drink bottle out of the boot of the large Audi people mover and hand it to a child in the back seat. She closed the door and went back to fighting with her partner on the footpath. It didn’t sound like they were going to finish any time soon so we decided to go for a stroll to the local art gallery.

As we walked past the couple, the woman said, “Excuse me. Can I ask you something? What three things would you say are important to maintaining a good relationship?”

How odd.

I was tempted to say ‘Never fight in front of your children.’ or ‘Never fight in public.’ Probably not useful.

Graham says his response would have been ‘Don’t own an Audi.’ That might sound like he’s being flippant, but when I asked him about it later, his point was that anyone spending that much money on a car (or going into that much debt to buy one) needs to re-examine their values and their priorities. Saying that you buy this kind of car for the technical excellence is a bit like saying you read Playboy for the articles. Everyone knows that a big part of the appeal of a luxury car is the nose thumbing you give to anyone that can’t afford one.  Either that or you’ve actually believed the marketing hype. Every dollar we spend casts a vote for something. Every dollar we spend says something about our values and our priorities.

He’s very good at using a few words to say a great deal.

There was a time when I would have quoted the golden rule to this couple; treat other people the way you want to be treated. It’s one of those ideas that’s become so well accepted that we no longer question it. Then I heard A. C. Grayling say this: ‘Don’t treat people the way you want to be treated. They might not like it! If you really want to be compassionate, take the time to find out how THEY want to be treated.’ Good advice. But a roadside request for help in the middle of a distressing argument is not the time for redefining a truism.

Here’s a game. Take a moment away from the computer and think about what three bits of advice you would have given this woman. It’s an interesting exercise.

Hands up anyone that put ‘Never go to bed on an argument.’ I think this one is great advice although I’ll admit that there are times when we’ve just been too tired and too distressed to resolve anything. Graham and I could count on our fingers the number of times we’ve had a distressing argument, and we wouldn’t need our thumbs to do it, but when it does happen the dynamic is familiar to most couples. One of us gets very distressed and emotional and wonders why they can’t make their partner understand the depth of their feelings and the other becomes quiet, offended and frustrated and wonders what they can possibly say to end the argument and to stop feeling like, somehow, the whole situation appears to be all their fault.

The distressed one continues to explain the source of their distress. The quiet one attempts to explain to them why they have no reason to feel that way.  And around and around we go.  This couple were caught in the same dynamic. It was clear from the body language and the sound of their voices.

When our arguments are over, it’s easy for me to make observations about this dynamic. The emotional one needs to recognise that nobody ’causes’ us to feel anything. We own our own emotions. It’s dysfunctional and incorrect to blame anyone else for how we are feeling. It’s also offensive to our partner to accuse them of deliberately trying to annoy us when, if we stop and think about it, that’s highly unlikely. People that love us don’t usually sit around planning to annoy us, unless there is something sociopathic about them. Our partner is perfectly entitled to take offence when we (from their point of view) suddenly start hurling accusations at them.

I think it’s often the case that the emotional one has something else going on, apart from whatever it is they’re saying. Sometimes the problem is an accumulation of small things, all of which, to be fair, should have been discussed at the time. Sometimes it’s an unresolved hurt from the past, or something that’s triggered an old memory. Sometimes it’s an expression of a completely unrelated frustration that even the accuser can’t articulate.

For the quiet one, it’s often the case that their first reaction to the emotional one is, ‘That’s unfair. How is this my fault?’. Not unreasonable. Unfortunately their next move is usually to explain to the emotional one why, logically, they should not be feeling the way they are feeling. This is, of course, guaranteed to send them into an emotional frenzy. The last thing you need when you’re feeling irrational and emotional is to have someone explain to you that you shouldn’t be feeling emotional and irrational. Our partner is perfectly entitled to take offence when we (from their point of view) fail to act compassionately when they are clearly distressed.

I think the quiet one usually has something else going on. Sometimes the problem is a difficulty in expressing their own emotions, or a sense of being overwhelmed by the emotions of others. Sometimes they have difficulty putting their feelings into words and are unfairly characterised as ‘unemotional’ because of it. We are all emotional. Some people struggle to express it.

When you start deconstructing the typical argument there are some bits of advice that might have been useful to this couple, or to anyone familiar with this type of fight;

If you’re feeling really emotional about something then calm yourself down first before talking to your partner, and don’t blame them for how you’re feeling. Check what else is going on in your life and try to decide what the real issues are. Before you talk to your partner about anything, think about how you can do that in a way that helps them to understand you rather than to feel as if they’re being attacked. Accept that all of us do things that annoy other people and that it’s okay to let most of that just float on by. Give yourself 48 hours to decide if something is worth bringing up and then let it go forever. Forever! No digging up the past and hurling it at your partner. Resolve it within 48 hours or let it go.

Or;

If your partner is upset, don’t try to explain to them why they shouldn’t be. They already are. Put your arms around them and tell them you’re sorry they’re feeling upset. That’s not admitting responsibility. That’s caring for someone you love. Tell them you really want to talk about what’s wrong but you want to do it when neither of you are feeling upset. Tell them that, for now, you just want to hold them until they are feeling better. Make sure that when both of you are calm you remember to ask about what was upsetting them. Be patient. Listen.

If I’d had time to think about it, that’s probably what I would have said to this couple. You’ll notice I haven’t told you which one of us is the emotional one and which one is the quiet one. You can probably figure that out. I’m trying to be fair to both sides here.

Hands up anyone that put ‘Choose the right person.’ It seems to me this is great advice. A large part of our happy relationship can be attributed to us having  elegantly aligned values. We care about the same things. We don’t care about the same things. We have the same attitudes to money, religion, politics, life and Audis. I like the phrase ‘to strike a chord’. To a musician, a chord is two or more notes played together to create a sound. If it’s an awful sound it’s discordant. I think we all resonate in response to other people. When I’m with Graham I’m a calmer, kinder, happier person. It’s easy. I think if you’re in a relationship that always feels like hard work you probably need to end it. A good relationship is easy most of the time.

There are some that think the key to a good relationship is to find your soul mate. I don’t believe in soul mates. I think it’s possible to have a relationship with lots of other people, assuming you’re reasonably mentally healthy and capable of kindness and compassion. I think it’s much easier to have a relationship with some people rather than others and that sharing common values is the key to that being easy. I worry that the whole ‘soul mate’ mentality leaves some people single because they never felt anyone met that standard, and some people grieving the loss of their ‘one right person’ for the rest of their lives.

I know at least some of my regular readers will have quoted Buddhism. Practice loving kindness. Always good advice. I also like this simple guide to saying anything; Is it true? Is it kind? Is it necessary? It’s an excellent filter.

Thanks to the couple having a fight on the side of the road, we had a great afternoon talking about relationships and thinking about what we could have said to them if we’d had time to talk about it and think about it. Of course, when someone stops you in the middle of the street and asks you to name three things that will help them to maintain a relationship it’s probably not helpful to say, ‘Can I have some time to think about it.’

The comedian in me wanted to day ‘Don’t ask random strangers for relationship advice.’ but they were both very upset. One outwardly, the other inwardly. I resisted my desire to be funny. Not kind or useful.  Instead, I said this:

1. Get cancer. If you get cancer you’ll realise that most of the things you’re fighting about aren’t important at all. You’ll realise how short life really is and you’ll pay more attention to what really matters.

2. Don’t try to fix your partner. Decide what you think is a perfect relationship and then concentrate on being your half of that. Work on being a better version of you.

3. Finally, love your partner exactly as they are right now, today. We’re all changing, all the time. Today’s version of them will never exist again, so love that person. Let go of who they were in the past. That person doesn’t exist anymore.

Some of this must have been useful, because the woman put her arms around me, thanked me three times and then sobbed. She turned to her partner and said, ‘Did you hear that?’ and then said, ‘Can you say that again?’ So I did.

We wished them well and walked on to the art gallery. They were gone when we came back. I hope they’re okay.