Fear of Recurrence: Part 2

It looks like I don’t need more chemotherapy (yay!). I haven’t actually heard back from my oncologist but I’m going to assume that means everything is fine. So it looks like I’m at the end of my treatment and now I need to adjust to what all the books, brochures and cancer support groups refer to as ‘my new normal’. I sometimes wonder if this is code for ‘you will never be as well as you were before cancer.’ I hope not.

Thanks to those that wrote with feedback after last week. It seems that fear of recurrence is an issue that affects just about everyone whose had cancer. Someone pointed out it’s also a huge issue for partners and children. So far, the best model I’ve found for dealing with it is Acceptance Commitment Therapy (or ACT) and this week I thought I’d write about the ‘acceptance’ part of that equation.

I think it might be helpful to start with how ACT is different to traditional Cognitive Behavioural Therapy (CBT) with apologies for all the acronyms but when you’ve got peripheral neuropathy you’ll take all the typing shortcuts you can!

During my time as a police officer I developed post traumatic stress disorder (PTSD) as so many do. The ‘gold standard’ in treatment for this condition has been CBT. This style of therapy gets you to notice your thinking, to identify ‘negative’ or ‘unhelpful’ or ‘dysfunctional’ thought patterns and to rewrite them. It describes a range of these ‘dysfunctional’ thinking styles, including black and white thinking, catastrophising, overgeneralisation and so on. These are called ‘automatic negative thoughts’. If you’d like to see a good list, here’s a link:

http://www.thehappinessinstitute.com/freeproducts/docs/Examples%20Of%20Unhelpful%20Thinking.pdf

Because it’s my nature to never do anything by halves, I read everything I could get my hands on about CBT. I journalled my ‘negative thoughts’ and rewrote them. There’s no question that it helped me cope with the PTSD.

Notice I said ‘cope’. CBT isn’t a cure. It’s hard work and you never stop having to do it. Here’s an example of CBT in action:

When my daughter was born I was hyper vigilant about her safety. Because of my time in child protection her birth triggered terrifying nightmares that involved her mutilation and death. During waking hours I found it physically painful to be apart from her. My automatic negative thought was that without my protection she would be kidnapped and killed. I dealt with this by writing it down and then collecting evidence. I would reassure myself that she was just as safe with my husband or my parents. I would review the crime statistics on kidnapping to remind myself that it is a thankfully rare occurrence. I would rewrite my automatic negative thought as “I recognise that when I am away from my baby I am anxious about her safety, even when she is safe. This is a consequence of my past work experience and not a rational assessment of risk.”

This helped. I would calm down. I would have my Mum or my husband take my baby out of line of sight for a while and then bring her back, safe and sound, just to retrain my subconscious into reasonable parental anxiety rather than irrational panic.

Acceptance Commitment Therapy is probably the latest evolution of Cognitive Behavioural Therapy but here’s the biggest difference. With ACT you don’t regard your thoughts as ‘negative’ and you don’t rewrite them. You just accept them. Russ Harris uses the analogy of holding a ball under water to illustrate the effort we use to control our thoughts. With effort, you can keep that ball down but the minute you become distracted, or need your hands for something else, that ball is going to pop right back up again. The essence of the ‘acceptance’ part of ACT is to let go of the ball.

Our mind has evolved to be a wonderful early warning system. It has had to be in order for our ancestors to survive. It’s the reason why the shadows of leaves at night can make us think of spiders or a sudden drop in temperature can put us on alert. But our thoughts are just a story. They have only as much power as we give them.

If I had been able to practice ACT when Zoe was a baby then this is how things would have been different; I would have felt anxious about her safety. I would have recognised that my brain was telling me the ‘scary baby safety story’ and I would have thanked my brain for trying to help me take care of my daughter. I would have made room for the thought by breathing into it and imagining it was a single cloud in a world where all of my thoughts were clouds and I was the sky. The clouds come and go. The sky remains.

Then I would have asked myself, ‘Is this thought useful? Does it help me to lead a fulfilling life consistent with my values?’ I value loving parenting so this thought is not without some benefit if it reminds me to consider my daughter’s safety, but when it escalates to the point where I am now too anxious and distressed to be an effective parent it has become counterproductive. Like a cloud that casts a momentary shadow, I can observe it and let it float on by.

Can you feel the difference in these two approaches? One feels stressful and requires constant vigilance and effort. The other is the opposite.

When I first read The Happiness Trap and learnt about ACT I was skeptical. I has spent many (many!) years practicing CBT and I’d become pretty good at it. I was reluctant to abandon something that had worked well for me for so long. But what if Russ was right? What if instead of fighting with my thoughts I could just accept them and breathe into them, and then turn my attention to something more important?

One of the characteristics of PTSD is the recurrence of distressing thoughts. Some people call this ‘the waking nightmare’. You’ll be happily going about your day and then suddenly something distressing and horrible from your past will jump feet first into your day and splatter mud over everything. It’s awful. It’s particularly awful if you’ve worked in emergency services or spent time in a war zone. I promise not to describe any of my child protection horrors. Please don’t try to imagine them. I resolved that the next time I had a flashback I’d apply ACT techniques, just to see if they worked for me. Here’s what happened.

I was suddenly confronted by an awful visual memory from a case I had worked on. I sat down and planted my feet on the floor to ground myself. I noticed the sights, sounds and smells around me as a way of bringing myself back into the present and back into the room. I put one hand on my chest and one on my belly and I held myself lightly, imagining the same tenderness I would feel for my baby daughter. Then I imagined that the horrible memory was just a bit of video on a TV screen. I imagined myself pausing it, rewinding it, playing with the brightness and the picture quality. I recognised that it was just a memory that my mind had stored to keep me safe. I thanked my mind. I thought about my values and what’s important to me now. I chose something to do that was consistent with my values.

Then I sat in amazement for about ten minutes. I felt like crying from sheer relief. Years of arguing with myself, of regarding my brain as damaged and broken, of grinding my teeth and clenching my hands and hating how I was feeling…….gone.

My mind is not broken. It’s normal. It’s doing a great job of trying to keep me safe.

I recently caught a bit of a webinar on dealing with fear of cancer recurrence. Most of the strategies amounted to something I think of as ‘constructive distraction’. They included practicing mindfulness, meditation, yoga and other forms or exercise or doing and enjoyable activity.

Distraction is probably the first strategy we learn to control our emotions. All dedicated parents learn to pick up the signs of an impending tantrum or an emotional event and offer all kinds of alternatives. If we’re lucky our parents taught us constructive distraction techniques like engaging in an activity we enjoy or taking a walk. If we’re unlucky then we developed destructive distractions like drinking alcohol, taking recreational drugs, over eating or self harm. The thing about distractions is that even the constructive ones are still a different activity if you’re doing them to avoid a negative thought.

You might remember that last week I used the example of gardening as something that I do to distract myself from fear of recurrence. Before I read about ACT I would hurl myself at the garden and exhaust myself in an effort to drive any thought of a painful death from my mind. After learning to apply ACT I breathe into the fear, I make room for it, I thank my mind for trying to take care of me, I recognise the thought as a completely normal and natural reaction to a life threatening illness. I practice mindfulness and then take action consistent with my values, which often includes heading out into the garden.

In both cases I’m in the garden, but the way I feel about what I am doing is completely different.

You’ll notice that I haven’t tried to get rid of the thought. It’s true, that one of the side effects of this method can be that the thought moves on, but that’s not the aim. Sometimes my fear of recurrence hovers about for a while. That’s fine too. I can accept this thought for what it is.

Here’s a great exercise to demonstrate the difference between control strategies and ACT. I’d encourage you to actually do this exercise because ACT is about doing, not about reading, and you’ll get a deeper understanding of what I’m on about.

Take a piece of paper and write down all of the things that are frightening you. Put some detail into it. The horrors that rise up at three in the morning. The ideas that keep you from falling asleep. You can use words or pictures.

Now hold that piece of paper in both hands and bring it right up close to your face so you can’t see anything else. Notice how it blocks out all of the wonderful things that are in your life. All of the friends and family and love and joy. Fear of recurrence can overwhelm us like this. (Okay, if you’re just reading this then go back now and write some stuff on a piece of paper. I promise this is a quick exercise.)

Now hold that piece of paper out at arms length. Try to push it away from yourself with all your might. Notice how much effort this takes. Your arms are tired. You can’t use your hands for anything else. Trying to deal with fear of recurrence using control strategies feels like this. SO much effort.

Now fold up the piece of paper and put it in your pocket or your bag. This is ACT. You can carry those thought around with you without them ruling your life.

Does that help to explain it? I hope so. I know some of you will want to rip up the paper or scrunch it into a tiny ball and throw it away. If someone comes up with a technique that actually lets us do that with troubling thoughts I’ll be there. In the mean time I accept that all of the emotions I feel, all of the thoughts I have, are part of being human. I don’t need to retrain my mind to be permanently optimistic (and I’m certain this is impossible). I can accept that my brain is doing the best job it possibly can to keep me well. It’s default setting is ‘Fear is a wonderful motivator!’

If you’d like to read more about ACT then here’s Russ’s web site:

http://www.actmindfully.com.au/about_russ_harris

His book ‘The Reality Slap’ is specifically written for people dealing with trauma, like a cancer diagnosis, and I highly recommend it. I hope you can understand why.

Next week I’ll write some more about fear of recurrence, how to identify your values and how doing so can help you to live a rich, fulfilling and meaningful life, even after a cancer diagnosis.

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