Decision-making and risk-taking
But it's not The Matrix
Twenty-five years ago, I had a Drug Education secondment along with two other head teachers. We received training ourselves which we adapted for Highland Council and facilitated the in-house training sessions. It was my introduction to the role of a trainer.
One part of training considered the decision-making each of us takes around alcohol and substance misuse. Naturally there are many factors that impact on our decisions and this includes the sorts of risks we are willing or unwilling to take, our perception of the level of risk involved and our prior lived experiences. It is much more complex than whether we are willing to take a risk or not. There are different types of risk: ethical, financial, social and physical to name a few. We place greater emphasis on one type or risk or another depending on the circumstances in which we find ourselves and our perceived competencies.
For example, paddling a Grade 3 rapid may be fun for an experienced kayaker but tough and nerve-wracking for a beginner. Furthermore, some people thrive on taking particular risks and accept the potential consequences of their actions. A free rock climber who chooses not to place protective gear into a climb knows this increases the potential for a serious accident or even death to occur. But the increased freedom of movement and mind may be worth this risk.
A different example could be…. Imagine you have just deposited £100 into your bank and then discover later that only £90 has been registered as going into your account. How likely are you to raise the matter with your bank on scale of 1 (unlikely) to 10 (certainly). Now let’s change the context. You and a friend hold a charity coffee morning and some of the donations come in as cash. You count it together and your friend offers to deposit this amount into a local bank. When you check, you discover the amount deposited is £10 less than counted. How likely are you to let your friend know and find out what happened, using the same scale as above?
Risk-taking and decision-making frequently occur with many people going through cancer treatment. Except the decisions are often life-altering. They often happen in a rush as time can be of essence. We are not always aware that we have a decision to make - sometimes the choice element is played down.
Often the decisions are permanent. There is no going back. Neo, in the film, The Matrix is faced with the choice of taking a blue pill to return his normal life and forget everything that’s happened. Or a red pill to uncover the truth about the Matrix. Imagine if this was possible with a cancer diagnosis…
In my poem, Stem cell transplant decision-making process, I had one of those life-changing decisions but without the red pill / blue pill option. My bone marrow biopsy results threw me because I had assumed my recent round of chemotherapy would have been as successful as the other ones a year earlier. It was like having to do an emergency stop when driving. I had nine days to decide whether having a stem cell transplant (STC) was worth the risks/benefits (and there are many) for me personally given the context of my situation, known research and my perception and understanding of both.
It is interesting when I mention to people who have Acute Myeloid Leukaemia about my decision not to have an allogeneic SCT. There’s usually a pregnant pause whilst my comment is digested. I do not wish to cause disquiet. We are in tough situations. AML is a cruel disease and all of us who have it need support not judgement. None of us have the opportunity to reverse our situations. We simply made the best decision we could best live with on the basis of what we were facing at the time. I have the utmost respect for anyone who has run the gauntlet of an allogenic SCT which involves at least 1-2yrs recovery with no guarantee it will be successful. Simultaneously I am proud that I had the courage to say ‘no’. Three years on, and I still have an inner sense of peace and relief as a result 95% of the time. It is the calm after the storm…
The easy decisions are black and white ones. The tough ones are grey and involve nuances, complexity and ripples down the line that we can’t imagine. Perhaps you have experienced complex decisions that have been life-altering or had to make them on behalf of someone else. If so I hope you had the time, freedom, support and space to come through all that’s involved. .
With love - Juliet x
This resonates with me in a big way! Back in 2008, when I was first diagnosed with an incurable ( but manageable 🤔) form of Non Hodgkins Lymphoma I was told that 1.) The disease could kill me 2.)The treatment could kill me, PERIOD! I was like WTF, WHAT kind of choice was it to have to try to figure out WHICH ONE was the lessor of two evils?! Of course choosing the one that at least gave me the chance to live was the one I had to choose. That choice did not come without a price though. The treatment basically destroyed my immune system, so much so that I developed an acquired immune deficiency that requires I receive replacement immunoglobulin (IVIG) every 4 weeks for the rest of my life. When I relapsed last fall, they told me they would be treating me with the same drug. As they put it, “since it worked the first time, and the “damage” it is known to possibly cause is done, that risk no longer exists.” Which seems so messed up to me, but here I am, now in the maintenance phase with that very drug. Ultimately, as patients we have to be our own advocates, difficult as it is at times. No one else has the right to tell us how we should be “doing” cancer.
What a deeply thoughtful post and thread....feeling very touched by the stories. Support and non judgement seem to be two of the most important aspects in thus decision making process. When time is of the essence deep listening also feels like an essential. I felt this way in mums last few months, of anxiety and panic attacks. She had suicidal thoughts about being alone and we, her children, were thinking about her having to go into a home .....even though we felt it would have been the death of her. Another very complex situation....and even though we all picked together to support and listen...it was so hard to stay out of judgment.
I am in constant awe of your courage and strength juliet ❤️