Medical staff


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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…

I wonder, have you ever had that feeling of being so happy, you could cry? As I sit here on the tarmac tonight, I am filled with a rainbow of emotions. And it is overwhelming in a good way. The most intense peace, happiness, joy and gratitude. Gratitude that I live in a time and place where I have choices. Gratitude for the wonders of flight that have enabled me to travel almost 2,500 kilometres here and back in one day to see a doctor doing some very special work. Gratitude for the people who go out on a limb pushing the frontiers of possibility. Gratitude for my family who have helped make this trip possible. And gratitude for that part of myself that never gives up.

Today I found another beautiful doctor. The second I entered his office, I knew I was in the right place. Warm, friendly staff who were pleased to see me and welcomed me by name, as a person, not a patient. And as I turned, I saw it, a Tree of Life painting on his wall. This symbol means so much to me. Steve and I once ran a practice where we actually painted the Tree of Life on our office wall. To me, it is a symbol of wholeness, of life, hope and beauty. And so I knew it was a sign just for me that everything would be okay. He introduced himself simply by his first name and explained the wonders of this new stem cell technology. And what wonder it is. My own tissue, to recreate what is missing without damaging me further. It is difficult to explain the feeling of parts missing, isn’t it?. And now the chance to feel whole again. I felt the tears as the emotions came. I can’t wait to get started.

First I’ll need an expander to create the space for a new breast. It’s quite brilliant really. No different to how your skin expands during pregnancy. But when I first enquired about reconstruction along traditional routes, I was told this was not a good path for me because of the radiation. But with this technology the stem cells actually heal the tissue as a part of the deal! It certainly pays to get a second opinion, doesn’t it. To look outside the sqaure. And then six weeks later there will be the fat transfer. Goodbye tummy, hips and thighs. I believe the benefits of liposuction are an added bonus with no scars! And to top it off, this surgeon recommends herbs and vitamins for healing. Again, he speaks my language!

Every woman who’s had breast cancer should know they have this choice, shouldn’t they.

Tonight as I travel home to my family and the comfort of my own bed, I want to leave you with the surprise I discovered in the hospital bathroom, just down the corridor. One more sign that I am in good hands. I was quite blown away. If you can, picture this. A suite of doctor’s offices, on the top floor of a hospital building. A regular office style bathroom, 6 cubicles and there in between the paper towel dispensers I saw this plaque:

Daily Affirmation – The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts, it is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company… a church… a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day . We cannot change our past… we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you… we are in charge of our attitudes.

If only more hospitals were designed to feed our minds as a part of our healing…

Have you ever wondered how we can become so disempowered as patients?

I guess it all depends on how we view our role in the healing relationship, doesn’t it?. Are we doing the healing and engaging others to help us? Or do we want someone else to fix us, abdicating our responsibility in the whole process?

When I was in the throws of cancer I went looking for an oncologist that was open to an integrative approach. Traditional, alternate, complementary, trial or cutting edge, I needed a doctor who was willing to explore them all, without bias. And I kept looking until I found one. Persistence has its rewards doesn’t it?! When I questioned him about using vitamins during chemo he responded by saying he felt they were a necessity. When I asked about radical approaches, he listened with an open mind. ‘We can only learn when we explore new ideas’ he said. And yet I’ve heard other horror stories of doctors who refuse to let their patients combine therapies despite research showing better outcomes. But surely it’s our decision. After all, whose body is this anyway?

Isn’t it interesting how we learn to label things right and wrong, black and white, good and bad. And yet we could always find someone to sit on either side of the fence. When something is right for one person, it may be wrong for someone else. It’s really all a matter of perspective isn’t it?! I remember the advice Petrea King (Quest for Life) gave me. In her wisdom she suggested I put every healing option on the table, make nothing wrong, and choose the ones that gave me the greatest peace. Her words carried me well and stopped the war and uncertainty within me. And I sense this could only have aided my healing.

And so I used copious quantities of vitamins, herbs, biofeedback, chiropractic care, physiotherapy, subconscious-mind therapy and kinesiology in conjunction with surgery, chemotherapy and radiation. I can’t deny it was full on, but, all in all, I had a great year. I studied, I worked, I mothered, I travelled and I smiled. Sure there were darker days, but I built a buffer around me and it seemed to make my path that much easier to travel.

And I delighted in listening to psychiatrist, Professor Graham Martin’s interview on ABC radio national: Taking charge: mind, body and recovery. After sudden paralysis in 2009, the doctor became the patient and discovered how we must all take charge of our own recovery, doing whatever we need to do to heal. It’s empowering stuff!

United we stand, divided we fall – surely the experience of cancer is not the time for a war between healing modalities…

 http://www.abc.net.au/radionational/programs/allinthemind/taking-charge-mind-body-and-recovery/2928194

The woman on the end of the phone was so surprised when I asked for a referral to two different plastic surgeons. ‘Taking a bet each way?’ she asked. But why the surprise? After all, don’t we shop around in every other aspect of our lives. If I had a plumbing job I’d be sure to ask a couple of plumbers to have a look. I’d check out the way they were going to go about things, the cost, and of course their attitude. If I didn’t like one, why would I give him the job? Well as far as I’m concerned the same goes for doctors. My body is the only house I live in. So how much more important is it than bricks and mortar? Some doctors have left me feeling scared and deflated, while others have given me such confidence. So I selected the ones that suited me best whether public or private. It’s so important who we have around us, isn’t it?!

Dr Herbert Benson writes about the importance of the doctor / patient relationship in his book Timeless Healing. It’s a fabulous read, I can’t recommend it enough! And he gives example after example of how much the bedside manner matters in our healing. You may be interested to know he devotes a whole section on how to choose your doctor. Because it is our choice, isn’t it?! And one of the most important we will ever make.

 ‘Never give up!’ Marylou Crabill writes in Stronger than Cancer. ‘Sixteen years ago I was given six months to live. My husband and I fired that doctor and sought a second opinion’. Whoa, I love her power. And I remember my daughter reading me a story from Chicken Soup for the Survivors Soul. By the way, I don’t like to use the term ‘survivor’ but that’s a different blog!  Anyway, this book recounts a conversation between two oncologists that goes something like this. One oncologist asked the other oncologist why his results were so much better despite the fact that they were both using the same drugs. And his reply: Where you give out the drugs E.O.H.P., I give out H.O.P.E…

 It’s all in the attitude isn’t it…

I wonder if you’ve ever realised how other people can affect us without us even noticing? And it can be in such simple ways. Sooner or later, everyone’s had the experience of seeing someone yawn and voila! – you’re suddenly yawning too. I even yawned as I was looking at pictures of people yawning to put with this blog. It just seems to plant a seed doesn’t it.

Isn’t it interesting how people can affect us at a deep subconscious level. The truth of this came home to me after Steve and I spent 14 months ‘trying’ to fall pregnant with our first child. A bit over the cycle of disappointment, we eventually decided to have a holiday overseas and look into fertility treatment on our return. So it was we booked 3 weeks away. I was 30 and had never been overseas before. I was very excited! And I guess you won’t be surprised when I tell you that a month after we got back I was pregnant.

Perhaps it was because we relaxed and stopped ‘trying’. But looking back, I now remember my father’s words – ‘make sure you go overseas before you have kids’. And I think the impact of his words are closer to the truth for me. At the time, I didn’t really give them much thought. But a part of me must have. It was as if a deeper subconscious part of me was listening and took it to heart. How easy it was then to give myself permission to fall pregnant once I’d done what Dad had suggested. No doubt the other factors probably helped too.

I noticed the same thing happen as I was going through chemo. The first cycle was easy. A bit emotional, but nonetheless, okay. My beautiful oncologist congratulated me on a job well done. ‘No side effects are compulsory’ he said. He always makes me feel so good. Whenever I visit, I’ve noticed that he waits for me to tell him if I have any concerns, rather than make suggestions as to what concerns I might have. He’s a wise man, and I am grateful for his care. But then it seems I came undone when I went for a check up with other medical staff. Have you ever noticed how some medical staff have no idea about the impact of their words? And it doesn’t help when chemo staff tell you what each drug is going to do to you as they administer it! And so despite my protests, I was asked the usual questions – did you have any side-effects? Did you feel nauseas, did you have diarrhoea? Again it seems a seed was planted. My second cycle was by far the worst I ever experienced. Nausea almost to the point of vomitting, diarrhoea. A complete wipe out. Chemo Monday I called it, the third day after chemo, and it was my lowest point throughout the whole 5 months. This time it hit me pretty hard.

But it didn’t last long. I was fortunate to have therapist friends who worked out what had happened and helped me to get the suggestion of these side effects out of my head once and for all. And I never experienced nausea or diarrhoea again. Each chemo cycle just got easier and easier. By the last cycle I was euphoric! I’d got there and I’d found resources within myself to make it easier.

So now I don’t read the side-effect lists. I pop them away, and if I have a problem I can look into them. I see no point in even entertaining the possibility. After all, how often do we imagine things to be one way, only to find out the reality is something quite different, in every other area of our lives? Each time I have a check up now the medical staff continue to be surprised by my lack of side-effects. But I’m not! And neither is my oncologist. Sure chemo is a physical thing, there’s no getting away from that. But I often wonder how many side-effects occur because a seed has been planted…