Given how willingly I marched into chemotherapy asking for my fabulous cancer-killing drugs, everyone has been a bit surprised by my attitude to radiation, including me. Yes, it’s much less invasive than chemotherapy and the side effects are reportedly easier to deal with, so why have I been so cool about it.
I’ve considered the possibility that after nine months of treatment it’s just that my enthusiasm is flagging. I want to be well. I don’t want to go back into the treatment tunnel where life revolves around appointments and managing side effects. It’s partly about that. But there’s more to it.
Certainly there’s a lot of shock reporting of radiation and the longer term side effects, including claims that it causes cancer. I’ve had to deal with a couple of people insisting that it’s too dangerous to be worth considering. As you will have seen from my previous blog on this issue, I don’t accept their assessment. In short, there are risks associated with radiation but when I balance them against the benefits, particularly for a highly aggressive cancer like mine, then those risks are acceptable to me. If I get a secondary cancer it will be because I’m alive to get it. Not having radiation might prevent me from becoming one of those statistics but death might be the means for doing so.
Radiation is, in my opinion, a dehumanising process, or it is when it’s carried out using the methods and processes of the clinic I’ve chosen to attend. I understand why giving me my own barcode to scan saves time but it does make me feel like a product. Unlike chemotherapy there’s no social aspect to radiotherapy, unless you can start up a temporary friendship with the patient that’s scheduled before or after you.
Treatment involves changing into a gown and putting your things in a basket, carrying the basket to the treatment room, climbing onto a table and into a body mould designed to hold me still and then imagining I’m a bag of wet sand. My breast are exposed and my hands are crossed above my head. What follows is a conversation between technicians that most consists of numbers, marking my skin with a texta, and moving me until I’m aligned with their laser marker lines.
Once they’ve lined everything up the treatment only takes a couple of minutes and, once again, my role is to be as still and as relaxed as it’s possible to be. Breathe normally. Don’t move because this treatment is targeted and my heart is directly under my tumour site.
The staff so far have been different people each day. I suppose by the end of six weeks I’ll feel a bit more comfortable with some of them but there’s no room for chit chat. When the treatment is over I pick up my basket and take it back to the change room, smiling at the next patient sitting in the hallway waiting for their turn on the machine. I wipe off the texta marks (it seems the staff don’t do this) and get changed, leaving my gown in a pigeon hole in the tiny change room so that I can use it again.
Okay, so it’s not at all pleasant, but even that doesn’t account for my strong aversion to being there at all. I’ve spent the last few weeks wondering what was going on. The clue came during my first appointment with the registered nurse that does my ‘treatment review’. As she was listing the now familiar side effects I noticed my reaction to the words ‘skin burns’.
During my 20 years of policing I developed post traumatic stress disorder. It’s so common in policing that many of us just accept it as a natural consequence of the job. In a culture where seeking help made you ‘weak’ I pushed through it until I developed fibromyalgia, almost certainly as a consequence of the post traumatic stress. What you notice when you have this condition is that even relatively small stressful events can ‘set you off’. You get a rush of adrenalin and cortisol. Your heart rate elevates and sometimes you break out in a sweat. Your mind gets sucked down a wormhole and deposited inside the memory of a previously traumatic event. With time you learn to recognise these symptoms. With practice, and in my case, yoga, meditation, cognitive behavioural therapy and learning the cello, you become better at calming yourself down.
The minute the nurse said ‘skin burns’ I recognised a post traumatic reaction. Here was my clue.
I will spare you the details of why the phrase ‘skin burns’ causes such a strong reaction. It’s sufficient for you to know that policing sometimes involves being around people that have been badly burned. If you’re lucky, they’re already dead.
So problem soved? Sadly, it’s not that easy. The thing that most people don’t understand about an irrational fear is that knowing the source of it, and knowing it’s irrational, will not cure the fear. Consider my first husband’s vertigo. Get him somewhere with any sort of height and he experienced an almost debilitating fear. When we took our daughter, then a toddler, up a high building to enjoy the view he stood next to the lifts while she ran to the windows. He’s an intelligent, capable man and he understands that he’s not going to fall, but that doesn’t stop the fear. Somehow my daughter, in spite of her early enthusiasm, also experiences vertigo as an adult. It annoys me when she’s trying to conquer her fear and some well meaning stranger laughs at her or tells her not to be stupid. The fear is real even if, in the circumstances, it’s unwarranted.
So it is with me and radiation. I know that I am not going to incur massive burns and that my burns, if I get them at all, will be temporary. My fear is not about the facts. It’s as much about living with the smell of burning skin and the memories that will trigger.
My first husband provides a clue. When he wanted to become a police negotiator he was required to climb the harbour bridge as part of his training. This was long before the famous bridge climb was in existence so the only protection was a wire with a carabiner attached to it. In spite of his almost crippling fear, he wanted very much to be a negotiator. He made the climb. I don’t know if he ‘cured’ his vertigo but he certainly improved it. Recently he posted a photo from China. He was standing at the lip of a huge cliff over a river. He’s come a long way.
The local reptile park runs a program for helping people overcome their fear of spiders and snakes. As I understand it, they gradually introduce you to situations where you come right up to the edge of your fear and then retreat. In time you can hold the object of your fear without a reaction. If you think about it, a lot of common fears make sense. Being afraid of spiders, heights, deep water, snakes and things that are dirty isn’t ‘irrational’ if you’re in an environment where those things might kill you. It’s what my Mum calls ‘lizard brain stuff’. It’s a remnant of the time before logic and reason.
All this is useful to me. Clearly I need to remind myself of the benefits of radiation therapy and why I’ve chosen to have it. I need to recognise my fear and understand the source of it, and then decide to push through it. I can use logic and reason to help deal with my primitive fear, but I think there’s a bit more to it than that.
I have a problem with prawns. I ate a bad one a long time ago and had explosive food poisoning as a consequence. I can enjoy really, really fresh prawns but most of the time I give them a miss. I know there’s only a slight risk of food poisoning but my body has acquired a natural revulsion to them. My husband has the same reaction to egg custard for the same reason.
If you think about it, this aversion is protective. My body’s ability to remember something dangerous and to warn me against it makes sense. It’s got evolutionary benefits. If an animal can’t differentiate between what’s good to eat and what’s potentially poisonous then the odds of survival are shortened.
It got me thinking. What if my post traumatic stress disorder operates the same way? What if the whole point of my ‘fight or flight’ reaction to seemingly innocuous situations is my body’s way of trying to protect me from further trauma. This makes sense to me. Suddenly, a condition that has been a source of anxiety and frustration becomes a force for good.
I’ve decided that one of the ways I can help to deal with my reaction to radiation therapy is to meditate on safety. This is simple. I sit comfortably, close my eyes, breathe slowly and repeat the phrase (either to myself or out loud) ‘I am safe.’ I’ve also started using it while I’m pretending to be a bag of wet sand on the radiotherapy table. I am safe. I am safe. I am safe.
For me, this is proving to be a useful way of retraining my subconscious. It involves acknowledging that my body is trying to protect me, and being grateful for that reaction. There’s a sense of ‘honouring’ the post traumatic stress, of recognising the benefits of a system designed to help me avoid further distress and trauma. I’m finding that this simple meditation is having a profound effect on my mood and my anxiety levels. I’m hopeful that over the next few weeks it will help to put my fibromyalgia symptoms (mostly chronic, wide spread muscle pain) back in their box. I’m recognising that even the fibromyalgia is a protective mechanism. My body creates a condition that requires me to retreat, rest and recover. I will pay attention to that.
I’ve got a copy of Jon Gabriel’s guided visualisation on safety and I’m going to start plugging in to that on a regular basis. Jon is a ‘diet guru’ with some pretty whacky ideas, including the notion that your weight might be a consequence of ‘past life trauma’ (seriously?) but this particular mediation is a lovely one. He speculates that excess weight can be a protective mechanism and that people may ‘hold on’ to that weight because they don’t feel safe. This visualisation is designed to address that. I think it can help me to overcome my post traumatic stress reaction. (If I drop some of the weight I gained during chemotherapy then that would be an added bonus!)
It seems to me that regardless of whether or not you’ve got post traumatic stress or cancer you’re going to have to deal with fear. Sometimes that fear will be sensible and protective, like the fear you feel in an empty city car park at 3.00am. Sometimes the fear will have an obvious but irrational source, but the fear will still be real. Sometimes some people just feel fearful and the source is unknown. In all of these circumstances the process is the same; figure out what’s causing the fear (and know that it may be something programmed into you through circumstance or genetics), consider changing the circumstances if you can (get out of the car park), or work on using your reason and logic to overcome the fear.
Finally, acknowledge that the subconscious is rarely convinced by logic or reason. ‘Knowing’ something doesn’t automatically lead to a change in behaviour. I ‘knew’ for a very long time that smoking was bad for me but it didn’t stop me smoking for a period of time well past the acquisition of that knowledge. So what is it that reaches the subconscious?
For me it’s a simple, positive statement that addresses the causes of my reaction rather than the symptoms.
I am safe.
(PS: For long-term changes in the way things work try learning a musical instrument or a language. Both have been shown to ‘rewire’ the neural pathways and if you have post traumatic stress that’s a good thing. If you doubt this methodology then spend some time researching ‘neurological plasticity’ or read ‘the brain that changes itself’. I’ll never be a great cellist but learning an instrument had a huge impact on my post traumatic stress symptoms. For short term changes and day to day management of fear try a simple meditation.)