Which doctor?

My uncle was diagnosed with mesothelioma last week. Fit, youthful and full of energy. Just slightly short of breath. And after the disbelief, I find that I am angry. And I am surprised it is not with the makers of the asbestos. It is instead with his doctors. Because when he asked if he had ten years, his respiratory physician said ‘no’. And then other doctors told him he had perhaps one year, maybe two. And couldn’t even look him in the eye. I ask you, what crystal ball do they have that we do not? Get another doctor I said.

Why crush a human spirit that is struggling to live through this diagnosis? Would it not be better to be more accurate when asked about life expectancy? Give some hope. ‘I honestly don’t know how long you’ve got, we don’t know how long any of us will live’ would be a good place to start. That’s the nature of being human, isn’t it. None of us know how long we’ve got. ‘Some people with this diagnosis live only a short time, while others live much longer’. An honest answer that gives the opportunity for hope. Because we are dealing with people, individuals, not statistics. And individuals vary so much. That’s how they get the statistics in the first place isn’t it. Because we are all so different.

I have lost count of the number of times I have heard of people given only a small number of months or years to live, who have outlived all expectations. Because they have something or someone to live for, because they have a different genetic make up, because they make different treatment decisions, because they add in complementary therapies, because they won’t take no for an answer.  To tell someone they have only x years to live, seems little more than the very essence of witch doctoring itself. Which is strange for doctors who pride themselves on their science, isn’t it. For if entranced by the doctors words, what choice does a person have except to give up and die? If only they realised how many people give up when the doctor conveys no hope. And sending ourselves a message of ‘no hope’ just seems to shut things down all the more quickly.

But isn’t it incredible how life gives you just what you need, when you need it most? Only 18 hours before I heard of my uncle’s diagnosis I was lunching with a friend. And out of the blue she told me a story about someone she knows who has been living with mesothelioma for ten years now. And he has a real purpose for living. So living he is, despite his diagnosis. And with the power in this knowledge, I was so relieved to be able to arrange for my uncle to chat with him. To counteract the sentence just delivered. Because knowing someone else has done it, means it’s possible, doesn’t it. And hope is one of the strongest life-supporting emotions we have…

 

A Safe Place

Surreal. That’s how it felt the day I found out I had cancer. And even though it was expected, a sort of dreamlike state seemed to envelop me as my doctor uttered those dreaded words. I guess that’s what shock feels like. Detached. Not quite real. I was stoic as I left, but collapsed into despair in the car. My husband, Steve, wanted to scream. I remember we drove to see a friend, who calmed me down a little with his words and his confidence that I would heal. I remember sitting in the park watching my children play, thinking it’s not every day you get diagnosed with cancer. I remember taking my kids out for dinner that night and looking around at the other families, thinking to myself, they have no idea of what’s just happened. Nothing seemed real.

And as the minutes turned into hours and the hours into days, I found the fear and indecision took hold. What best to do? Everyone had a different opinion. Would I live or would I die? Would I survive the treatment let alone the cancer? I felt lost. And there were those days that it all became too much, and I’d scream or cry inconsolably at the injustice of it all and the thought of having my breast cut off. I was fortunate at those times to have my friends who would calm me with their words. Helping me to find some inner peace amidst the chaos and pain through their impromptu relaxations. I wasn’t good at meditating. Too hard to calm myself with all the stress inside my head. I was so grateful they were there to guide me, to carry me when I needed it most.

After I had healed I thanked them for the love they had shown in my darkest times. ‘Pay it forward’ said Peter. And so this is so much a part of what I do. Sharing with others the tools that helped me.

And their words of comfort? I bottled them so to speak. Today I recorded a guided relaxation to help people cope with the distress of diagnosis. Any diagnosis. Any difficult news really. Just as I was helped. And I’ve called it A Safe Place.

Because there’s no where to hide when you get the diagnosis, is there? There isn’t much on offer when you hear that news? You’re kind of left to your own devices, leaving the doctor’s office in a sort of daze. And there is no going back.  No turning back of time. The only path is forward. And it can be difficult to know what to do.

And I feel good about this relaxation. Knowing the path, it’s my way of helping people through the madness that seems to descend with those dreaded words. Anywhere, anytime feelings of overwhelm set in. To help counteract those feelings of being disconnected as people seem to talk at you. And you’re not really there. Not quite taking it all in. Not quite sure what to do.

It is my hope that in time the hospitals will embrace this CD. Offer it in the chemo suites to calm and relax people while the chemo is going in. And in calming people it may even help to reduce the side effects. A big call I know, but I know the value of this work. I’m fortunate to have lived it first-hand. Because I know that even when the pain is great, you can always find a safe place within yourself. A place of peace and calm which can give you the strength to get through. A place where you can feel safe as you leave the world and it’s worries behind…

 

Flip of the coin

Looking back I am amused by people’s perceptions. When I was first diagnosed with breast cancer, I walked around for a couple of months with a tumour inside of me, while I processed the shock and worked out what was best for me. I didn’t tell many people and so, even though I had an active cancer, nobody treated me any differently. After all, I looked the same, didn’t I. And so it strikes me as funny that once the cancer had been removed, and I began chemo as an insurance policy against it ever returning, people then thought of me as a person with cancer. Simply because I had no hair. The stereotypical sign of cancer. And I smile, because in fact, it was actually the other way round.

Our perceptions are interesting, aren’t they. How many times have we thought that something was one way, only to realise later it was something else? I gave my daughter a beautiful book called Duck! Rabbit!.

Throughout this gorgeous book there’s a debate about whether or not the drawing is in fact a duck or a rabbit. And it really could be either. I love it, because it causes the reader to stretch the way they think about things. To challenge our perceptions, to question and explore new ways of thinking, other possibilities. Because, like a lot of parents, I want to open up the possibilities life holds for my children. And this begins with them, doesn’t it. Helping them to develop their own way of thinking and not just automatically buy into what every body else thinks is real, or right or true. What delights me most is that the benefit is not just for my children.

Because there are always two sides to every coin, aren’t there. And when one lands in our lap, I think we can sometimes forget to flip it over. To take a look at what the other side has to offer. And although there were many times throughout my experience I wondered if this was the end, looking back I now realise that it was just the beginning. An opportunity, a chance in life, to do something very special for myself…

 

Pointing the bone

It has often been suggested that the diagnosis of a life-threatening condition can be a little like pointing the bone in Aboriginal culture. Where death results with relative speed for the person who has been boned. And it is a little like being boned, isn’t it?. When the shock of diagnosis can cause so many to give up.

I saw my own surgeon resign himself to a speedy exit. ‘My stats aren’t good’ he said about his own diagnosis of cancer. I don’t believe in stats (unless they’re in my favour). I think we can do much to create our own stats. And in a matter of only 4 weeks my strong, six foot surgeon went from being my doctor to becoming a frail and ill man needing support of his own. I was shocked by the speed of his transformation. In his book Timeless Healing, Dr Herbert Benson describes it like this: ‘Overnight, patients diagnosed with chronic medical problems or illnesses began to think of themselves as ‘sick’, and the effect that label had on their psyches and their physical heath was substantial’.

I’ve heard it said that there are some doctors who believe they have killed more people through diagnosis than the actual disease. And, as helpful as it is to diagnose something so we can get appropriate treatment, I often wonder how many lives are shortened by the power in these words? I’m not advocating we stick our heads in the sand, but it’s so important to remember we always have a choice in how we think of ourselves, isn’t it?. We can allow other people to label us, or we can choose to see ourselves differently.

Yesterday at a workshop, a beautiful young woman shared her father’s story when she heard of the work I was doing. A beautiful story of hope and the power of the human spirit. You see, many years ago, this man was misdiagnosed and treated for haemorroids for an extended period of time. So by the time he received the diagnosis of cancer, he was given only 3 months to live.

But he went on to enjoy another 7 years of life. And enjoy them he did!

When the doctors were pessimistic he allowed their pessimism to wash over him. After all, it was their pessimism, not his. And so he found new doctors that gave him hope. He travelled some distance to find them, doctors trialling experimental techniques, and he embraced them boots and all. During this time he travelled the world 5-6 times and enjoyed his family. Chemo was an experience they chose to share, his children accompanying him to the chemo suite and making the most of the opportunity just to be together. In the end, his daughter tells me, he let go not when the doctors decided, but when the time was of his making.

Isn’t it empowering when we can move through the shock of diagnosis and take the responsibility for our lives into our own hands. When we take an active part in our own self care…