When I was in treatment it was one day at a time, one foot in front of the other. You focus on the present because contemplating the short term, with all the impending treatment, makes you want to run screaming to the nearest wardrobe and lock yourself away. Contemplating the long term future starts with ‘will I even have one?’ It’s all pretty scary.
Suddenly it’s over and you start the long road to recovery from the physical and psychological affects of it all. For me, one of the greatest challenges has been making any kind of future plans.
My husband talked about an overseas holiday next year and perhaps buying the discounted early bird tickets but I was nervous about recurrence and losing all that money.
My daughter, whose still years away from having children, laughed about potential baby names and I wondered if I’d be alive to meet them. When I tried to joke back she thought I was putting pressure on her. I think I was trying to laugh away my own anxiety. It didn’t work.
My friends at yoga tell me that this kind of thinking is unhealthy. I need to focus on the positive and to ‘not attract that negative energy into my life’. There was a time when I believed this absolutely, and then I didn’t. During my treatment, well meaning people have occasionally sent me articles about all forms of alternative or complimentary treatment essentially being no better than the placebo effect.
It was disheartening.
If all this time and effort to be as positive as possible (while still allowing for the normal range of human emotions) wasn’t going to make any difference then why bother? I carried that thought around for a while and then realised it wasn’t a hypothetical question. I needed to answer it.
My answer to ‘why bother?’ was that finding ways to be happy and joyful made my quality of life better on a day to day basis, even if it had no impact on my survival odds. I also decided that it made me better company, more likely to hold on to those friendships and relationships I valued and, at the very least, a better way to spend my time than staying in bed in a dark room and crying all the time.
Slowly, slowly I’ve reclaimed my future. I’ve started by buying theatre tickets for a show that’s several months away. I’ve booked events that don’t appear on this year’s calendar. These are cautious first steps.
Recently I took my beautiful daughter to Billabong Retreat in Maralya (NSW Australia). It was an inspirational few days. Healthy food, wonderful yoga and deeply committed staff that really care about making sure everyone has a great time. They showed a movie by an Australian journalist called ‘The Connection: Mind Your Body’.
Shannon Harvey was diagnosed with an auto-immune disease and used a combination of mainstream medicine and complimentary medicine to recover. She decided to make ‘the documentary I wanted to see when I was diagnosed’. It’s described as a film ‘…about how the latest scientific research is proving that there is a direct connection between your mind and your body when it comes to your health.’
This is not hippy-dippy crystal gazing. This is eminent, highly qualified experts from leading universities and teaching hospitals talking about legitimate scientific research. Their testimony is interspersed with true stories of recovery and wonderful insights into the way stress affects every one of us.
I was really pleased to see one of the experts draw the same conclusions I have about the placebo effect. Why do we say ‘It’s JUST the placebo effect’, as if we’ve conclusively dismissed any treatment by doing so? True, the placebo effect does describe situations where the subjective opinions of the patient are possibly the only thing that’s been altered; a person in pain is given a sugar pill and reports feeling better. But the placebo effect also applies in circumstances where there’s a measurable physiological response; people with irritable bowel syndrome given a sugar pill were cured (and the really impressive thing about this particular study is that they were told it was a sugar pill, and that due to something called the placebo effect their doctor thought it might help them!).
What’s going on here? People are curing themselves with belief. The trouble with the placebo effect is that it’s associated with people being duped. You buy the snake oil and convince yourself that it’s worked, even when there’s no observable difference. I think we need two terms; one for this phenomenon where people incorrectly believe something helped them and one for circumstances where people are actually better.
Of course, even just feeling better or thinking that you’re better is no small thing. Ask anyone with chronic pain what they’d give to live pain free. If belief and a sugar pill (or a crystal necklace or a copper bracelet) can make someone believe that they are in less pain, that’s not a small thing.
By a wonderful coincidence I watched this movie while sitting next to Karen, another woman enjoying the Billabong Retreat. Karen has stage four breast cancer. To the uninitiated, that means her cancer has now metastasised and is considered untreatable. Her doctors have given her palliative chemotherapy in the form of a tablet that she takes with meals. Palliative, of course, means ‘making your death less painful’. There is no cure.
Karen was given this diagnosis five years ago.
Five years ago her doctors used the word ‘terminal’ and she just decided to keep living. She was at the retreat because they’ve only recently found another tumour on her liver. She looks well. She’s not what you think of when you hear the phrase ‘terminal cancer’. She believes that taking time out to relax, meditate, eat well and do yoga will help her to keep on living. Having watched ‘The Connection’ with her, I know she’s on the right track.
Karen’s thinking is that she has a health condition that requires management, just like hypertension or diabetes or asthma. Without management she might die. Just like hypertension or diabetes or asthma. She’s taken the fear out of her diagnosis. She is joyful and genuinely inspirational. She jokes that life is a terminal condition. Every one of us will die one day so why should she waste time obsessing about cancer. I’m sure she’s had dark days too, but she reminds me of the famous Shawshank Redemption quote; get busy living or get busy dying.
There are those that believe people come into our lives for a reason, and those that believe it’s all just coincidence. Either way, I’m very glad I met Karen. We spent time after the movie discussing the impact of the things that doctors say to us. In an environment where their fear of litigation is stronger than their desire for patient’s peace of mind, they now give us detailed descriptions of all the things that might go wrong. Based on the research we saw in this movie, it’s possible that this single change in procedure could be having a significant impact on patient outcomes. Trust in our doctors has an impact on our recovery.
I want skeptics to see this movie. I want them to understand that their well-meaning condemnation of anything that isn’t mainstream has the potential to compromise someone’s recovery. If you have someone like that in your life you might like to get them a copy. Here’s the link:
The Connection: Mind Your Body
In between retreat activities, Karen was photographing dew drops hanging from a native plant. She’s an artist. She commented on what a beautiful painting the image would make. She gave me a brochure for the Artists Trail that she’s a part of. In the whole of the time I spent with her, I never once heard her say anything like ‘if I’m still here’. Most people at the retreat had no idea about her health. She chose not to tell them.
I’ve been paying a lot of attention to my internal and external dialogue as part of my recovery. Having met Karen and seen this movie I’m now putting renewed energy into it. I don’t say ‘my cancer’ because I prefer to speak of it in the past tense. It’s ‘the cancer that I had’ or ‘the cancer I was treated for’.
I no longer routinely mention my medical history to people, although, to be honest, this one still needs some work. I’m proud of how well I’m doing and how, in spite of being told I’d have permanently restricted arm movement I’m now managing yoga poses that I’ve never done before. Ego. I need to relegate cancer to my history. That’s somebody that I used to be. I need to focus on who I am today.
How timely. What a great reminder.
Today I’m going to enrol in a twelve week permaculture course. I’ve been living permaculture since my twenties and I’ve always wanted to participate in formal training. I’ll be there every Saturday with a bunch of other Permies, getting my hands dirty and thinking about what other food plants I can squeeze into the garden.
I’ll plant at least one avocado. They take five to seven years to bear fruit. When my brain says ‘Will you ever see that fruit?’ I will thank it for trying (in its clumsy way) to keep me safe and spare me grief. Then I’ll go and find some great guacamole recipes. When the new tree bears fruit I’ll invite Karen over for lunch.