Dying to Know Day

In Australia, the 8th of August is ‘Dying to Know Day’. It’s a concept that a lot of people find confronting. People are encouraged to host events where they sit around and talk about, well, dying. Here’s a link:

D2KDay

I first became aware of it about six or seven years ago. I met someone on a course who was involved in organising a kind of coffee-and-nice-chat-about-death event. At the time I was both surprised and curious. I didn’t have any objection to talking about death but I didn’t understand why we needed a day for it. She explained that some years before she had experienced the still birth of her first child. The event had left her devastated in a way that I am certain can only be understood by a woman who has lived through nine months of pregnancy and expectation only to be given such crushingly sad news.

She told me that one of the most difficult things was finding anyone prepared to talk with her about the death of her baby. People shut down, stayed away or changed the subject. This not only left her feeling isolated and unsupported, but feeling as if her child’s death meant nothing to other people; that it was best to just pretend she had never existed at all.

The Buddhists have an interesting approach to death. They believe that until we can honestly face the reality of our own existence (that we must all die) we cannot live a fulfilling life. They make the observation that those who have faced death, and understood the finite nature of all things, have a deeper appreciation of what really matters.

I agree.

I worked as a police officer for many years. I saw more deaths than I can remember. All kinds of death. Babies that mysteriously stopped breathing, people that had been the victims of violence (often at the hands of someone they loved) and those that just happened to be in the wrong place at the wrong time. I’ve seen the bodies of very old people that passed away in care facilities with only a drawer full of possessions and I’ve seen the incredibly privileged and wealthy looking just as dead.

I’ve learnt about the death rituals of a handful of different cultures so that I didn’t cause offence. Some of these are very moving. The Jewish people all occupy a simple, rope handled coffin made of pine or particle board when they die. It’s a symbol that no matter how rich or clever or famous we were in life, we are all equal in death.

So you would have thought, having spent so much of my working life dealing with it, that death had no capacity to shock me.

And yet, when I received a diagnosis of a potentially terminal illness I went into shock. Of course I understood that I would die one day, but one day had always felt like it was a long way off, and that there was plenty of time to figure everything out when I got closer to it.

There are so many reasons why we need to talk about death. There’s the practical stuff, like how we feel about organ donation, and whether we’re okay with cremation. There’s the personal stuff, like what we want to have happen at our funeral and who we’d like to receive any accumulated wealth or possessions. These are the relatively easy conversations.

The more difficult ones are about where we would like to die and how we would like to die. Australia has a shortage of hospices and almost no support for those wishing to die at home, and yet most Australians do not want to die in a hospital. Hospitals are places where people go for treatment, where they get their recovery monitored and their drugs administered. They are not designed for dying. When more of us start thinking and talking about where and how we would like to die, this situation will improve. We’ll start talking to politicians about better funding for death services, so that we can have the kind of death we choose.

We might even see a change to laws that prevent people from seeking medical assistance to end their lives. I respect the opinions of those that would never make this choice and I understand all of their opposition to assisted dying. I promise to never force anyone to make that choice against their will, or their faith. I also ask them to extend to me the same respect for my own beliefs. I’ve seen what death from cancer can look like. I have no fear of death, it’s dying that terrifies me. I would like to be able to legally ask a doctor to speed that process up if I find myself caught in a low, slow, humiliating decline towards an inevitable outcome. It’s okay if you don’t agree with me. Just please don’t condemn me to the agony my father endured.

Death is frightening. By avoiding it we can stay floating in that delusional bubble where we behave as if we are going to live forever, and that’s precisely why we need to have the conversation. Life is short. None of us know the time or the manner of our death.

I contemplate death on a fairly regular basis now. I dodged a bullet, for now, but somewhere in my future there’s is another one with my name on it. There’s one for you too. Knowing this had made me very particular about how I spend my time. It’s much easier for me to be clear about who is important to me and what I want to do with whatever is left of my life. Death is helpful for that.

And so on the 8th of August I would invite you have a conversation with the people that love you about death. Talk about your death, and their death and whether or not any of you have ever seen death. Talk about where and how you would prefer to die and who you would like to be there (assuming you get a choice). Talk about the practicalities but don’t miss the opportunity to have a deep and honest conversation about why we don’t talk about death more often.

And why we should.

The stuff we put on our bodies

Yesterday my daughter sent me a link to an article. Researches have established a causal connection between dark hair dyes, chemical hair relaxers and breast cancer. Here’s the link:

Breast cancer and hair products

I started finding grey hairs when I was in my early 20’s and started dyeing my hair shortly after that. Because I was naturally dark brown, I chose to dye it to something close to my natural colour (apart from a scary auburn period during the 80’s, but hey, it was the 80’s!). That’s more than 30 years of what my husband referred to as ‘soaking your head in toxic chemicals’ about every six weeks.

It was at Graham’s suggestion that I stopped colouring it. I also shaved it off to raise money for blood cancers, because this seemed like a great way to break the dying addiction and support a charity. Two years later I lost it all again thanks to chemotherapy.

I’m now naturally grey. To my surprise and delight I get more compliments about my hair than I have at any time in my life. It’s got this great thing going on that looks like I’ve paid a fortune for highlights. I haven’t. It just grew back like this. Meanwhile I see lots of girls in their twenty-somethings colouring their hair grey!

It has always seemed odd to me that we have strict laws about food and very few about cosmetics. We know that the skin is great at absorbing chemicals. That’s why nicotine patches work. It’s why you can now get transdermal patches for all kinds of medical conditions. They allow you to absorb chemicals over a long period of time rather than getting it all at once from an injection or a pill.

So why is don’t we have the same kind of regulations around cosmetics? We are essentially consuming everything we put on our bodies. It turns out that a large number of cosmetic products contain known carcinogens and that even those that don’t contain chemicals with unknown risks to our health. Yuck.

And it’s not just cosmetics we need to be concerned about. It’s everything that comes into contact with our bodies. Take triclosan. You’ll see it listed as an antibacterial ingredient in hand sanitiser, toothpaste, dish washing detergent and liquid soap. Pretty much anything claiming to be ‘antibacterial’ either includes triclosan or has been treated with it, including furniture coverings, bedding and underwear. Triclosan is a hormone disruptor. Here’s an extract from the Wikipedia article about it.

Because of potential health concerns spanning from antimicrobial resistance to endocrine disruption, triclosan has been designated as a “contaminant of emerging concern (CEC)”, meaning it is under investigation for public health risk. “Emerging contaminants” can be broadly defined as any synthetic or naturally occurring chemical or any microorganism that is not commonly monitored in the environment but has the potential to enter the environment and cause known or suspected adverse ecological and(or) human health effects.[34] Triclosan is thought to accumulate in wastewater and return to drinking water, thus propagating a buildup that could cause increasing effects with ongoing use.[35]

In an article from May 2015 on the current status of triclosan, Gurpreet Singh Dhillon and colleagues cite various studies that report “emerging health concerns related to the use of TCS such as microbial resistance, dermal irritations, endocrine disruption, higher incidence of allergies, altered thyroid hormone metabolism and tumors development due to TCS and its by-products”.[36]

 

Interestingly, it’s still considered safe ‘in small amounts’ but how much is too much? If you’re working in a hospital and sanitising your hands several times a day, wouldn’t you be absorbing a huge amount of triclosan? And here’s the kicker; it doesn’t work as well as soap and water when it comes to cleaning your hands.

Of course this is just one example of one chemical. The list of potentially toxic substances that wind up in our homes is a long one. You can spend a disturbing time googling and reading for more information. This chart is a pretty comprehensive one, but it only has household products, not cosmetics or all personal care products:

Toxic products in the home

If you’d like to really spoil your day then here’s a couple of articles about those:

The 20 most harmful ingredients in beauty products

15 toxic beauty products that most women use anyway

So what to do? Well, educating ourselves is the first step. Know that ‘organic’ is nonsense then it comes to beauty products or household cleaners. It might just mean they’ve included a few organic ingredients with the chemicals. It might mean they’re using the scientific definition of ‘organic’ (hint; everything is organic!) rather than the commercial use which is supposed to indicate that food has been grown or manufactured using only a limited range of approved chemicals (another hint; there is no such thing as ‘chemical free’ because everything is made of chemicals.)

It’s a good idea to read labels and choose products that avoid the known nasties. True, the thing you buy could contain something that gets proven to cause disease next week (or next year, or whenever) but at least you’ll have limited your exposure to things that are known to be bad for you. This might mean having slightly less shiny hair, but you’re worth it.

Know that most liquid things that come in plastic bottles will also be contaminated by the plastic bottle. If you want to go hard core you might consider decanting shampoo and conditioner into glass or ceramic dispensers (most people won’t) and give up liquid soaps and body wash products completely in favour of a bar of soap.

Go natural. Okay, it’s not practical for a lot of women because there’s still this weird expectation that we all look a certain way, a requirement that strangely does not apply to men. If you have to wear makeup, or you love to wear makeup, you might want to avoid cheaper brands, opt for a less ‘made up’ look so that you wear less, and choose things with fewer ingredients and none of the nasties. A simple rule of thumb is to buy things labelled ‘fragrance free’ or ‘sensitive skin’ because they will have less dangerous chemicals than the perfumed varieties.

And finally, have a long hard think about your hair and what you would like to do with it. Now that there’s a clear link between dark hair dye, chemical straighteners and cancer, do you really want to keep putting that stuff on your head. If the answer is ‘yes’ then perhaps consider hunting for safer products and going lighter. Or perhaps it’s time to get a really flattering cut from a great hairdresser using all the money you’re going to save on hair products. There’s an obvious pun here about dying for dyeing but I’m not going there.

If you are a man reading this then please start telling the women in your life how great they look when they haven’t put makeup on their faces. Love them as they are and support their decisions about kicking the dyeing. I read a comment from a woman recently who said her husband tells her to colour her hair so she doesn’t look old. Seriously.

I’m pragmatic about all of this. A ‘chemical free’ home is almost impossible to achieve. If you don’t have tank water then there’s chlorine in your water and it evaporates into your home every time you shower. But you can reduce the toxic load by making smart choices about what you choose to use.

As a final tip, avoid redecorating disease. Lounges, cushions and soft furnishings like mattresses are typically treated with flame retardants that are, you guessed it, highly toxic. Get something with washable covers or just keep the things you already have until they fall apart. You’re probably rolling your eyes at all this. I don’t blame you.

That’s enough about chemicals. I’m off to the garden to put my feet into some healthy dirt. Apparently, there’s something in the soil biome that helps us to avoid depression. It turns out that lots of bacteria are beneficial to human life and that trying to kill them all off with disinfectants, herbicides, fungicides, antibiotics and solvents was a really stupid idea. Imagine.

Should we stop talking about cancer?

This month I celebrated four years since the trip to BreastScreen that found triple negative cancer in my left breast. It’s an important milestone for me. Unlike other forms of breast cancer, the risk of recurrence drops every year I stay cancer free, right up until year five when I’m actually at the same risk as everyone else. It’s about the only positive to triple negative!

I don’t put a lot of things on my Facebook page about cancer. I have a separate page at Positive3negative for that. I separated out the cancer related stuff fairly early on. I realised that some people didn’t want to read about my treatment or my recovery. I think I also wanted to identify the cancer as being something apart from me, a thing that was happening to me and not who I am.

Anniversaries are different. I’m aware that my initial diagnosis prompted a lot of friends to go and get their breasts checked. This is a good thing. Early detection saved my life and in spite of a raft of negative press about mammograms, I’m definitely a fan. It’s true that there have been issues with early detection of DCIS (ductal carcinoma in situ). It’s at the lowest level of breast cancer and some argue it should actually be classified as ‘pre-cancerous’. It’s clear that many of these cases will be healed by the body without any treatment.

Of course, some of them will also go on to develop tumours and a subset of those will metastasise and ultimately kill you. The problem with DCIS is that we don’t know which versions are the self-healing ones and which are potentially fatal. There’s research going on to identify the difference and until they can do that, there will be women having surgery for DCIS that didn’t need it. Personally, I’d rather not need the surgery and have it than need it and not have it. The important thing for all women is to have as much information as possible. Some may choose not to have mammograms, or to have them less often.

In any case, for those that choose to have them, posting something that lets them know another year has gone by is the least I can do. I always get a few friends thanking me for the reminder. This year I also got a message that said:

If you keep that thought in your mind it repeats itself. Let it go and no return, by deed or thought. No one seem to learn the lessons.

Wait……what?

It was posted by someone that was once a very close friend. She rarely posts or comments on anything on Facebook. She turned up once at the very beginning of my treatment to tell me to ‘be positive’ and I haven’t seen her since. Not when I needed people to drive me to chemotherapy, not when I could have used some help around the house and not when some company during radiation would have been welcome. She was nowhere to be seen when I had two (now ironically named) breast conserving surgeries and not even a card when I was in hospital for nine days following the surgical removal of both breasts.

I could have been outraged. Fortunately, a friend that has been a true friend through all of this happened, quite coincidentally, to send me this TED talk around the same time:

Forgiveness in the age of anger

It’s worth twenty minutes of your time. There’s a lot of great advice here but the part I really loved was about the way social media seems to be full of outrage. “I can’t believe she said that!” “How could he be so rude!” “What were they thinking!”

The speaker, Brant Hansen, makes the point that our outrage is usually misplaced, particularly when someone is behaving in a manner that is entirely consistent with their past behaviour. “You can’t believe your mother behaved that way? How many years has she been behaving that way? Why can’t you believe it?”

Hansen is the author of a book called ‘Unoffendable’ where he suggests that learning not to be offended by anything can have a profound impact on our lives. I agree. When we can let go of being outraged, accept that human beings consistently behave in ways that are inconsistent with our own values and simply let that stuff go we are much better off.

I asked my ‘friend’ to explain her comment about letting go of cancer. I added this:

How about ‘congratulations on still being here four years after you were told you were probably going to die’. I have managed to defy predictions of my early death. I’m pretty sure I’m going to keep doing everything I have been doing, even if you disagree with it.

Reading that back, it’s possible to interpret that comment as outraged but it seriously wasn’t. Try reading it again in a calm voice and you’ll get my intention. I wanted it to remind this person that the reason I’m celebrating four years since my diagnosis is because I’ve worked hard at staying alive, and part of that process for me has been recognising all of the things that impact my health and taking action. I know that ignoring cancer and pretending nothing happened is an option for some people. It’s just not an option for me. Here’s her response:

That’s great. I just don’t think talking about it all the time is healthy. Let’s just leave it at that. Txting messes with people’s minds. Xx

I’m still not offended. Here’s my take. This person is clearly not comfortable with cancer. There might be some history there or she might just be one of those people that likes to avoid any reminder of her own mortality. She could either ‘unfriend’ me or hide my Facebook comments if she doesn’t want to read the very occasional posts about cancer, or she could just scroll on by, but for some reason she feels compelled to comment.

I can only conclude that it is her world view that the best way to avoid cancer is to not mention it. This makes sense. It’s entirely consistent with her behaviour. It would also explain why she has completely avoided me since my diagnosis.

I don’t routinely mention my medical history to people. In spite of the fact that I am surgically flat chested, most people don’t even notice. I could just look this way naturally. From time to time when it’s appropriate, it will be part of a conversation but usually because someone else has raised it. I get that everyone wants to move on. I do too.

Continuing to write about cancer occasionally, to offer support to the recently diagnosed, to write books about it and to maintain a Facebook page with updates on the latest research might be seen as me trying to remain the centre of attention. It’s true that I have never felt more loved than when I was in treatment. I also never, ever want to have to go through that again! I’m not ‘hanging on to it’. I’m giving back.

I know that the people that had come before me were hugely supportive to me during treatment. Reading about those that had survived triple negative inspired my own survival. There was also lots of practical advice. I’m just paying that forward. It is great to hear from people that are now in the cancer tunnel that they can see the light I’m holding. I got to here and they can too.

To be honest, there’s some self interest here too. I don’t want to forget. There were some life changing lessons in the whole experience. I know that it’s not just my cells that got replaced after chemotherapy. I feel like a completely different person. Perhaps mentioning cancer is a cypher for that; it’s a way of saying ‘You might think you know me but I’ve been through this transformational experience and I’m not that person any more.’

My husband and I shared a table at an event recently. He told the strangers sitting with us that we were celebrating a cancer anniversary. The woman next to him replied ‘At some point that stops being a thing.’ Her husband explained that she’d had breast cancer a decade before. I get it. I think it’s likely that at some point I’ll stop writing about cancer. I don’t think it’s likely that I’ll stop thinking about it and I don’t want to. It reminds me to take good care of myself. It also reminds me to share those reminders with people I love. A timely mammogram might just save a life.

And the person that thinks I should just stop mentioning it? She’s entitled to her own opinion. Hopefully she’ll keep it to herself in future.

Getting doctors to take us seriously

I woke up this morning to news that a friend is in hospital with a burst appendix. This should not have happened.

She developed the characteristic pain associated with appendicitis last week and saw an after hours doctor. She was referred to a hospital for assessment where she was examined by another doctor who decided she didn’t need further treatment. She was not offered either ultrasound or a CT scans. She was sent home.

Her doctor accepted the word of the hospital doctor and continued to work with my friend to determine what was going on. There were tests. There was pain medication and ultimately a burst appendix. All this in spite of my friend repeatedly reporting acute abdominal pain.

I can’t help wondering if women reporting pain are treated differently to men reporting pain. This is not my only recent experience of this apparent bias.

My daughter has an unfortunate history of not being taken seriously by doctors, particularly with regard to pain. As her mother, I know that she is inclined to actually be rather stoic when it comes to pain. She does not exaggerate and she’s likely to wait a while before she resorts to pain medication. I know that if she says she is in pain she means it.

And yet, time and again she has had doctors dismiss her with a shrug of their shoulders and a suggestion that she should ‘just keep an eye on it’. This week she will have surgery on her finger. It has been causing problems for a couple of years now. It is always tender and if she bumps it against anything she experiences strong, stabbing pain on the underside of the nail bed. She has repeatedly told various doctors about the problem.

Finally my daughter encountered a freshly minted doctor, filling in at the practice she regularly attends. The locum was interested enough to send her for an MRI. What it revealed was a tumour. While currently likely to be benign, this type of tumour does have the potential to become cancerous. It needs to be removed.

My daughter is understandably angry. She’s not only had years of pain in the hand, she’s had it while working through a university degree and having to type on a daily basis. She’s had it in spite of several reports to doctors who seem to have just assumed she was over stating her pain, or displaying some kind of hypochondria.

Not only that, but this is just the most recent in a series of similar events where it has taken her two, three or four visits to different doctors before she finally finds someone prepared to take her seriously. In every single case there was a serious underlying medical condition that required treatment.

How does this happen? Are doctors’ surgeries so filled with over-reporting, attention-seeking women that the rest of us get tarred with the same brush?

My daughter wonders if she would have received better treatment if she had been a man, particularly a large, football-playing man. I think she would have. I think a doctor would have assumed that any man attending the surgery and reporting acute pain in his finger had something worthy of further investigation.

If you are a doctor and you are reading this then I would like to offer this piece of advice. Please do not assume. Your opinions about female patients might have some basis in fact and I allow for that. It could be that women actually are more inclined to exaggerate their symptoms or to seek medical attention when some over the counter pain relief and a bit of rest are all that is needed. Personally, I doubt this. It is inconsistent with my own experience but my personal experience is limited and perhaps you know better.

Still, here’s the thing, even if some women (or even most women) are inclined to this type of behaviour, many of us are not. Many of us are the type of people that wait to see a doctor and possibly wait a bit too long. When we arrive at your surgery seeking your help we’ve already given time and Panadol a go. We have already been ‘keeping an eye on it’ and that is why we are now seeking your help.

You might also like to keep in mind that we have a naturally higher pain threshold than men. There’s good science on this. So when we report pain it is likely to be more serious, not less.

I think it’s just possible that there is a long history of characterising women unfairly. We used to be treated for ‘hysteria’, a mysterious condition thought to be caused by our womb roaming our body and creating mood swings. In recent years the assumption that our menstrual cycle will result in strange and irrational behaviour every month has become so widely accepted that it now gets used as a criminal defence. The truth is that most of us manage to live our lives without turning into raging lunatics once a month.

Menopause is characterised by some as an onset of permanent mood swings that are as suddenly changeable as New Zealand weather patterns. Which is odd, given that I now keep company with a circle of post menopausal friends who clearly manage entire days, weeks and months of sensible behaviour.

Enough.

Women are not over emotional. We are not, by nature, moody, unreasonable, attention-seeking drama queens. Most of us are just like men in this regard; capable of experiencing the full spectrum of human emotions and expressing them in appropriate ways. The exceptions are just that. Getting doctors to understand this is not just about better bedside manner. It is about saving lives.

My daughter’s cyst could have become a tumour. My friends appendix has burst and she is now dealing with the risk of long term health consequences because of it. Head to any cancer forum and you will read story after story of women that were told a lump was nothing to worry about only to discover it was a tumour. We’re not making this stuff up!

As patients I think we also need to be aware that this bias exists. I wish it was as easy as saying to a doctor, ‘Do you think you might take me more seriously if I was a man with these symptoms?’ I am known to be what my husband politely refers to a a ‘forthright’ but even I would find this kind of comment too confrontational. There are gentler ways to achieve the same outcome.

Perhaps it would be a good idea if we enter a doctor’s surgery with a clear idea of what we want and refuse to leave until we get it. Being able to ask for a scan or some other form of diagnostic test can be difficult. We want to trust our medical professionals. We feel rude challenging their diagnosis.

I have found that it can be useful to frame this kind of request as a need for reassurance. This doesn’t challenge your doctor’s expertise. It can also be useful to ask your doctor to consider alternatives. Yes, a second opinion is an option but it is also both time consuming and expensive, and there is no guarantee that you’ll be treated any better by another doctor.

So here, in the interests of better health care, are my suggestions for questions to ask your doctor when you feel like you’re getting the ‘silly woman’ treatment:

I have been worried about this and I would really feel a lot better if I could have an x-ray (ultrasound, bone scan, blood test etc).

I know you don’t recommend having any kind of testing for this but I’d like one anyway.

May I please have a referral for an ultrasound? And if your doctor replies that they do not think you need one: I appreciate that but I would like one anyway.

What should I do if I still have the same symptoms in a couple of days? (Next week? Next month?)

What else might be causing this? 

None of these questions are rude or discourteous in any way. You’re just asking for what you want. Of course asking for what you want can feel like hard work in an environment where you know you might be dismissed as over reacting, simply because of your gender.

Which is precisely why I think we should all get a lot better at doing it.

 

 

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.

 

 

 

 

A Day of Rest

I might be about to officially enter the ranks of ‘old person’. I’m going to write about something we used to do when I was young that doesn’t happen anymore. ‘In my day…..’

Please don’t misunderstand me. I’m generally not sentimental about the past. I think our species has come a long way in the last fifty or so years. We are, on the whole, less violent, more tolerant and more interested in family and community than we are in power or the accumulation of personal possessions.

But I miss Sundays.

When I was a kid the shops were closed on Sunday. Saturday was the day you went shopping. If you were fortunate enough to live in a country town you also spent a lot of time saying hello to other people, stopping for a polite chat with those that weren’t close friends, but were part of your community. A lot of people also relegated time on Saturdays to cleaning the house or mowing the lawn.

Sundays were for resting.

For those that were members of a church or other religious congregation, Sundays were a day of gathering and worship. For everyone else there were the secular traditions; a Sunday roast with immediate or extended family, a walk or a nap after lunch, a quiet corner with a good book and an early night so we were all well rested for the week to come.

I wonder to what extent the chronic stress, anxiety and depression that now plagues us can be traced to the introduction of Sunday trading. You can now shop seven days a week. Thanks to online shopping, you can now shop 24 hours a day.

Marketing has always played with human psychology. It’s designed to make us want what we didn’t know we wanted. Its primary weapons are greed and anxiety. It seeks to convince us that more stuff will make us happier, more attractive, more successful. Even though we know in our hearts that this is untrue, we buy anyway.

This week three things bubbled to the surface of my world. The first was a piece about two studies into human behaviour that have been running for around 70 years. They’ve been tracking participants since they were kids at college in the USA. They can now tell us what it is that leads to people declaring their lives successful and happy. It’s connection to other people. Imagine! Not wealth or power or fame. It’s all about the quality of your relationships with others.

The next bubble was an article about resilience. Researchers are recommending that all the techniques for dealing with trauma and stress are of little benefit to us if we don’t take time to rest and recharge. It’s the quality of our time out that makes the difference.

How interesting that both pieces of research seem to be stating the glaringly obvious.

The final bubble in this week’s mix was a tiny purple flower that appeared on Facebook. It allowed us to express our gratitude. In addition to indicating that we liked or loved something, or were amused, amazed or angered by it, we could show our gratitude. A few days after it was introduced it was gone. There’s a petition to bring it back. I loved it. So did a lot of other people.

The research into expressing gratitude shows us that doing it regularly is good for us. It helps us to be happier with what we have. It pushes back against the marketing onslaught and allows us to look around our existing environment and appreciate that, for most of us, we already have enough. Gratitude also reminds us that the things that matter most to us are our relationships with other people, the opportunities we have to connect with nature and fun we have when we take time out from work.

I wonder if there’s a group of highly paid psychologists somewhere, recommending the Facebook owners avoid anything that encourages people to express gratitude. It can’t be good for business. If we are focusing on what we have and the importance of relationships and experiences over things, we are surely much less likely to want to spend money on things we didn’t need in the first place. We might even decide to spend less time on Facebook.

For my part, I’m signing the petition to bring back the grateful flower, I’m continuing to limit Facebook to no more than an hour in the morning and I’m spending time each Sunday recording seven things I’m grateful for.

I’m also reinstating a commitment to Sunday as a day of rest. That might mean lunch on the verandah with good friends or just going for a relaxing walk with my husband. There will definitely be more reading and the occasional trip to the movies. I also want to spend more time sitting in the garden and just enjoying it, rather than planting, weeding and mulching. It’s not that I don’t enjoy the gardening. It’s that I want to stop and appreciate the outcome.

I hope this week you’ll find some time to rest and recover. Maybe it’s time to reflect on your achievements or the quality of your close relationships. Maybe it’s escaping into a book or a movie. Whatever you decide to do, know that you’re doing your mind, your body and your spirit a favour. Rest is undervalued. I think it’s time we turned that around.