Fear of Recurrence: Part 3 (Values)

Thanks to everyone for the feedback on my recent posts about acceptance commitment therapy (ACT). I’m so glad you’re finding it helpful in dealing with your fears and negative thoughts. This week I want to talk about the ‘commitment’ part of this type of therapy. First, here’s a good quote that summarises some of the ideas around the ‘acceptance’ bit:

“The ACT model flips a lot of conventional psychotherapy wisdom on its head. And arguably the single biggest flip in ACT is this: thoughts and feelings don’t cause problems. From an ACT perspective, no matter how unpleasant, painful or difficult a thought, feeling, sensation, urge, craving, memory, or emotion may be, it is not inherently problematic, in and of itself. These “private experiences” only become problematic, toxic or life-distorting in a context of fusion or avoidance. If we change the context to one of defusion, acceptance, and contact with the present moment – (more commonly known as “mindfulness”) – then that very same thought, feeling, sensation, urge, craving, memory, or emotion is no longer toxic or pathological. It may still be very painful of course; but it’s no longer life-distorting; it no longer needs to hold us back form living a rich and full life.”

So, in summary, if you’ve ever read a self-help book, attended a personal development course or had cognitive behavioural therapy, you will have been encouraged to label your thinking ‘dysfunctional’ or ‘self defeating’. ACT doesn’t do this. All of our thoughts and feelings are normal, human and to be expected. You are not broken just because you’re terrified of cancer. Who wouldn’t be terrified? You are not going to stop being terrified of cancer. What ACT can teach you is that it’s possible to live a rich and full life in spite of those fears. The key is to recognise that all of our thoughts are just stories that we tell ourselves. They have no power unless we give them power. ACT therapists call this ‘fusion’, where an idea becomes so real to us that we can’t recognise it for what it is; just another story.

We also don’t need to invest time and energy in running away from these thoughts, filling your mind or your body up with things that distract you from fear. For some people this approach leads to addiction, alcohol or drug abuse, over eating, over training or just obsessive busyness. ACT therapists call this ‘avoidance’.

If you’ve been practicing any of the things I’ve suggested in my last couple of posts on this topic then you have hopefully gained a better understanding of what ‘fusion’ and ‘defusion’ feel like. If you haven’t bothered to do any of the exercises then please go back and try them. You can’t learn to do anything new without practice. Theoretical knowledge is interesting, but it’s not the same as developing a new skill.  It’s the difference between researching cars and learning to drive.

Hopefully you’ve now got at least a few examples of things that frightened you until you grounded yourself, recognised that your mind is a great story teller and, for the most part, is just trying to keep you safe. You’ve made room for the upsetting thought and just observed it. It’s important to note that ACT doesn’t try to get rid of these thoughts. True, sometimes defusion causes them to float away on their own, like leaves on the surface of a stream, but often they keep floating about or they circle back and return on another current. It doesn’t matter. They’re just thoughts. We can accept them and decide whether or not they are useful to us.

But what’s the criteria for ‘useful’. How does making space for our thoughts lead to having a rich and full life? Well, it doesn’t. Not on its own. In order to have a rich and full life we need to take action. Defusion will help you to respond to upsetting thoughts and feelings but to complete the process you need to do something meaningful and important to you. The best way to do this is to act in accordance with your values.

Try this. Write down your top five values. Don’t read any further until you’ve stopped and actually written them down.

No, really.

How did you go? Some people struggle to find five. Some people struggle to limit themselves to five. If you’re fortunate enough to see an ACT therapist with a set of values cards they can take you through the exercise that I did with Kerry Wagland at the Gosford Oncology Clinic. She uses a huge set of colour coded cards which she asks clients to sort. At the end of that process you come away with a long list of values, including your top five. Here’s mine:

1. Health (hardly surprising that this should be number one for me right now).
2. Helpfulness; helping others
3. Mindfulness
4. Relationships; friends and family
5. Creativity

It’s been so useful for me to have this list. When I get that free floating anxiety that comes with the end of treatment, or a specific fixation on something to do with my body (Is that a lump? Does that headache mean metastatic disease? Why are my bones so sore? And on and on and on) I ground myself, close my eyes, put one hand on my chest and one on my abdomen and BREATHE into the anxiety. I make room for it. I accept that it’s normal to be frightened after cancer. And then………

This is the important bit……

Then I ask myself if the thought is useful. Does it help me live a life consistent with my values? If it doesn’t I just let it float. If it does then I harness the motivation. Either way I thank my mind for trying to keep me safe. When it comes to fear of recurrence some of those thoughts are particularly useful in helping me to live a life consistent with my highest current value; health. I used these events to remind myself of my commitment to daily yoga, to eating well, to fasting two days every week and to doing all of the other things that I’ve now incorporated into my new, healthier life.

I also hope I’m using these thoughts to help others, by writing about them, by talking about them and by sharing what I’ve experienced using ACT. Sometimes my ‘helping others’ value is not helped by these intrusive thoughts. In those cases I just let the thought float, and then take some action that I know will benefit someone else.

Each time I breathe into my fear of recurrence I’m practicing behaviour that’s consistent with my third value; mindfulness. The whole ACT model incorporates mindfulness and this helps me to remember to enjoy my life today. The past is gone. The future can’t be predicted. Perhaps I’m here in five years, or ten years, or twenty years and perhaps not. My value of ‘mindfulness’ reminds me to enjoy all of the wonderful things about my life today and not to waste whatever time I have worrying about the future.

All of these activities help me to address my fourth top value of building great relationships with my family and friends. The people that love me can see me taking really good care of myself. This is the greatest gift I can give them. I’m also a lot more fun to be around than someone whose constantly worried about cancer. Like so many people that have experienced this horrible disease, I’ve discovered a new depth to the relationships I have with my husband, my daughter, my mother and the friends that have stuck by me. I’ve also discovered I can let go of those relationships that involved people with different priorities and agendas. They are just not part of my journey any more.

My final top five value, creativity, is the one that benefits most from ACT. You might remember that I used my love of gardening previously to illustrate the difference between doing something because you love it, and doing something to distract you from ‘negative thoughts’. The first is joyful. The second is soul destroying, because not only do you find that you can’t outrun your fears, you also discover that using a previously enjoyable activity to try to avoid your fears just destroys that activity for you. I suspect this might be part of the reason that people with clinical depression lose any enjoyment of life. We cannot run away from ourselves.

Prior to learning ACT I would have thrown myself vigorously at the garden in an attempt to overwhelm my fears. Now I accept my fears as normal. I make room for them. I head out into the garden for the pure joy of it, and not to escape or avoid anything else. I garden mindfully, enjoying the smell of the soil and the feel of the plants. ACT puts me in the garden, rather than using it as an attempt to overwhelm distressing thoughts (which never really works, or never works for long).

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

http://www.actmindfully.com.au

His first book ‘The Happiness Trap’ provides a good, easy to read overview of ACT. His later work ‘The Reality Slap’ deals specifically with how we respond to trauma and will be very useful to anyone dealing with a cancer diagnosis.

A final few notes about values. There are not good, bad or better values. Your values are specific to you and will be influenced by your upbringing, your experiences and your own approach to having a good life. Values are a bit like ice cream flavours. I can’t tell you why I like caramel better than chocolate. I just do.

Values are not fixed. I really DO wish that health had been my number one value for all of my adult life. I might have avoided cancer. But when I was younger it was a much lower priority than things like achievement and financial security and building a professional reputation. You’ll notice that none of those make my current list.

Values are not rules. They are broad areas of interest and significance. If you google ‘values’ you can find lots of lists of common values to help you decide which ones are priorities for you. If you describe your values with words like ‘should’ or ‘must’ they are not values. Similarly, values are not about how other people should behave. They are just about what you find important right now.

My favourite values exercise is to think of people I respect an admire and to list the values that make me feel this way about them. Then I think of behaviour I find annoying in others and see what this tells me about my own values. I don’t like greed or untruthfulness, for example. No surprise that integrity and generosity both make my long list.

Don’t get too caught up in picking the ‘right’ values. Get a list. Give them all a score out of 10 and then use that to narrow it down to a top five. You’re not throwing any value away. You’re just trying to give yourself and easy guide for taking committed action. Do this and you’ll be a whole lot closer to the rich and rewarding life that all of us want.

Advertisements

No More Chemo…. so…. hooray (sort of)

I finally got to have a good long talk with Rachel, my lovely oncologist today. We’ve agreed that I’m not having any more chemotherapy.

When my one year scans picked up more cancer in my left breast the multidisciplinary team unanimously recommended a mastectomy. My oncologist was on maternity leave but the Professor that runs the practice was on the team and she suggested that a platinum based chemotherapy should be considered. My surgeon rang my oncologist and discussed it with her at the time and it was agreed that I should not have it prior to the mastectomy.

When I saw my oncologist recently she raised the possibility of having it now and seemed inclined not to, but she was uncertain about it. I’ve been waiting for her to get back to me so we could both check our research and discuss it.

Here’s the thinking behind the decision:

There is good evidence that having a platinum based chemotherapy drug added to the cocktail for triple negative breast cancer prior to surgery can result in a higher chance of a pathologically complete response (code for ‘all the cancer dies’). My oncologist says there’s no research that established a complete pathological response necessarily translates into better long term survival but I was sure I read that it did so I’m going to have to go back and check that. In any case, that horse has already bolted. I’ve long since completed my neo-adjuvant (before surgery) chemotherapy and I’ve had three surgeries since. If I could turn back time I’d have asked for platinum in the original mix.

Note: Since writing this post I’ve found the research that shows a pathologically complete response does improve long term survival prognosis. Here’s the link: http://www.ncbi.nlm.nih.gov/pubmed/17443564

Neither my oncologist or I can find any research indicating that having a platinum based chemotherapy at this stage of my treatment, when all detectable cancer has been removed, would be on any benefit at all. The dilemma is that it MIGHT be beneficial. We just don’t know.

On the other hand, chemotherapy will weaken my immune system and might actually create an opportunity for my notoriously aggressive and treatment resistant cancer to take hold again. All chemotherapy also carries risks associated with the side effects. The platinum based drugs are considered to be among the worst in terms of side effects. I already have numb and painful hands and feet from the FEC chemotherapy and it would likely become worse and potentially crippling with a platinum on top of all that. There’s also a risk of kidney damage and hearing loss.

My oncologist made the observation that I am really well. I look and feel great. My energy is slowly returning and I’m fitter than I’ve been in a long time. Of course, I was also getting compliments on how great I looked when I had my one year scans and discovered that I still had cancer.

All things considered the best course of action seems to be to hold the platinum in reserve. My plan is to not ever have cancer again. In which case I will never need it. It’s also worth considering that if I had it now I wouldn’t be able to have it later. Given that there is no known benefit to having it now we’re both comfortable with the decision to avoid it.

Of course, what all this brings into sharp focus for me is how fortunate I am to have access to such a great medical team. It’s so good to be able to work cooperatively with doctors that are happy for me to do my own research and ask lots of questions. I don’t know how many patients Rachel sees, or how she manages to remember the complex histories and pathologies we all have, but she always manages to make me feel like I’m her only patient and that she has all the time in the world to discuss my treatment. I know she doesn’t. It’s why I always make notes before I talk to her and try to stay on topic. I could easily spend days discussing triple negative breast cancer with her (but I doubt she’d enjoy that as much as I would).

As is so often the case with decisions about cancer treatment, this is a complex decision. In the absence of any evidence to the contrary it seems to be the right one, and that’s really the best you can ever do.

 

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.

Fear of Recurrence: Part One

I’m feeling well.

I suspect that some degree of peripheral neuropathy is now a permanent thing. It’s been twelve months since chemotherapy and my doctor’s advice is that whatever I have now is probably part of my ‘new normal’. I’ve also got arthritic pain in my hips and one side of my collarbone. I’m 53 in a few weeks and I notice that all of my friends in my age group have their own list of aches and pains. Bad backs, dodgy knees, sexual dysfunction, migraines, digestive problems…….it seems to me that I’m no different to any of my friends. We all have something that keeps us a few steps back from being totally well. Age can do that.

But apart from some niggling lower back pain and numbness in my hands, I’m feeling well.

I saw my oncologist last week for the first time in a year. She’s been on maternity leave and although my surgeon has kept her up to date with what’s happening, she wanted me to go right back to the first surgery and explain everything to her. The radiation, the one year scans with suspicious cells, the second ‘breast conserving’ surgery, the discovery of invasive cancer and then the bilateral mastectomy.

If you’ve been following this blog you’ll recall that there was an issue over the marker clip being left in after the first surgery. It had been placed between four tumours arranged in a diamond pattern. It would not have been possible to remove the whole of the tumour bed without the clip (unless it had moved – but there would have been a hole where it had been). My surgeon has already admitted that leaving the clip behind was a mistake. The pathology from the second surgery found one of the dead tumours so clearly part of the tumour bed was left behind after the first surgery.

My oncologist thinks that my ‘recurrence’ was the original cancer. It was left behind.

This makes sense. There was DCIS (ductal carcinoma in situ) under the one remaining tumour and I don’t think it’s unreasonable that there might have also been DCIS under any or all of the other three tumours.

Of course my first thought was, “Did I really need a mastectomy?”

Actually, my first thought was, “SHIT!!! Did I REALLY need a mastectomy????????”

I spent a day frenetically moving mulch and contemplating that possibility. I felt angry and distressed. I don’t like being someone’s mistake.

Then I realised that leaving those cells behind might have been the best possible thing that could have happened. They survived chemotherapy and radiation. This cancer is resistant to both! Clearly my chances of recurrence were extremely high. Figuring out where cancer comes from in the first place is still the subject of research and theorising, but one possibility for me is that some of the stem cells in my breast tissue were manufacturing cancerous cells. No breast tissue means no breast stem cells.

It’s also possible that a mutated cell from some other part of my body has lodged in the breast tissue, recruited a blood supply and grown tumours as a consequence. Researchers have established that all of us have potentially cancerous cells circulating our bodies all of the time. When I say ‘all of us’ I mean every human on the planet, not just those of us diagnosed with cancer. Most of the time there’s a natural process that causes those damaged cells to die but some of the time they manage to ‘trick’ the body into treating them like an essential cell and then they recruit a blood supply in much the same way that an embryo does.

This is the reason why chemotherapy is so effective against triple negative breast cancer. It targets all fast growing cells. That’s why our hair falls out and our fingernails become damaged. It’s why we need to take special care of our skin and our gut when we’re having treatment. Microscopic cells get wiped out, wherever they are, and doctors can be sure the treatment is working because they can observe the reaction of the tumours to treatment. Recent research into triple negative breast cancer has shown that having chemotherapy first will greatly improve survival chances. If you’re lucky enough to get a pathologically complete response (all your tumours die during chemo) then your odds take a big step up.

Curiously, having a mastectomy first actually decreases long term survival. Nobody has figured out why but it has been observed that triple negative breast cancer seems to recur in scar tissue. It also seems likely that the cancerous ‘seed’ cells are being made somewhere else in the body or that even a few remaining breast cells can regenerate the cancer because otherwise a mastectomy would be a cure.

The difficulty for me is that I’ve now entered the land beyond statistics. My case is so unusual that there’s no data set for it. There is not a sub-group of women that had chemotherapy with a PARTIAL response followed by surgery that PARTIALLY removed the tumour bed, followed by what might have been recurrence OR remnant original cancer.

My oncologist asked me if further chemotherapy was discussed with me. The recommendation from the multi-diciplinary team (the same one that unanimously recommended mastectomy) was that a platinum based chemotherapy be considered. At the time of my appointment I couldn’t remember being offered it but with hindsight I can recall my surgeon saying she’d discussed it with my oncologist who had recommended against it. This is one of many reminders that doctors have lots of patients and it can be difficult for them to remember all of the details of every single case. We need to be responsible for managing our own health.

Having checked my pathology and noted that there was no sign of cancer in the tissue removed during the mastectomy my oncologist seemed to lean slightly towards not giving me any further chemotherapy. You would think I’d be happy with this decision but the platinum based drugs have been showing great results in treating triple negative breast cancer so I’m anxious about whether or not this is the right decision. I’ve left a message for her to call me either today or tomorrow, just so I can be sure we’ve made the right decision. The question I want to ask is “Why did you decide NOT to give me the platinum?” or perhaps, “If you had my medical history, would you want the platinum?”

Perhaps I should seek a second opinion from the oncologist that recommended the platinum.

I am feeling well and my friends tell me I’m looking well. Things are getting ‘back to normal’ by which I mean my health is no longer the main topic of conversation. This is a good thing. I am not my disease.

But I now regularly find myself momentarily horrified by the thought that the cancer is going to come back. Any slight ache or pain becomes a source of concern. Is that headache, that pain in my neck, that ache around my liver, that burning feeling in my bones, a symptom of metastatic disease?

Some nights I lay in bed and obsessively poke and prod my body in pursuit of anything lumpy. Or I see an ad for a concert or show that won’t be on until later next year, and without effort my brain asks if I’ll be here to use the tickets. When the National Breast Cancer Foundation decided to make this year’s Breast Cancer Month all about people with stage four (terminal) breast cancer I found myself unable to read the advice and stories about women in palliative care. I don’t fear death. It’s the manner of my dying that haunts me.

So I am looking and feeling well……..and secretly terrified! I know I share this with everyone that’s ever survived cancer. Fear of recurrence is the subject of booklets, workshops and online forums. A lot of what they advise is already part of my routine. Meditation, yoga, eating well and trying use reasoning or distraction to deal with negative thoughts. Here’s the problem I have with a lot of what’s recommended. A distracted life is a life half lived. Spending my time cycling through negative thoughts about fears of a horrible death and anything to take my mind off it requires effort. It also sucks the life out of things I enjoy.

Let me give you an example. I love gardening. I can happily spend a whole day weeding, mulching and planting but if my motivation for doing that is to avoid negative thoughts then it becomes a completely different activity. Instead of being something I enjoy for its own sake, it now becomes ‘busyness’ to occupy my mind. It’s also not a very effective way of dealing with fear. Yes, there will be stretches of time when the busyness trumps the fear, but the fear always comes back. It’s tiring. Something wonderful and enjoyable becomes soul destroying.

The other strategy familiar to many people will be the use of evidence to argue against the fear. This one is particularly appealing to me, having worked as a police detective for many years. There are two problems with arguing with myself. Firstly, I’m inclined to become a bully. My internal language can easily slip into berating myself for being ‘weak’ or ‘stupid’. Secondly, the evidence that I might be dealing with cancer in the future is unfortunately strong. Going in search of evidence can leave me more frightened than I was when I started.

Some people recommend facing your fears, confronting them, describing them and staring them in the eye. This strategy reminds me of the stone angels in Dr Who. You can hold them still as long as you don’t blink!

It’s true that yoga and meditation both help me to calm myself down. They both provide me with a kind of respite from the fear of recurrence. But they don’t get rid of it.

Recently I learnt about something called ‘Acceptance Commitment Therapy’ (practitioners call it ‘act’). I have found it to be so helpful in dealing with my fears that I’ve been recommending it to other people. I’ve had a few people ask me to write about how I’m using it to deal with fear of recurrence so that’s going to be the subject of this blog for the next few posts.

I am not a therapist, psychologist or counsellor. I’m just a cancer survivor writing about my own experiences so the next few posts will be about my own application of ACT and how it’s helped me.

If fear of recurrence, depression or post traumatic stress disorder is crippling you then I strongly recommend you get professional help. Here’s a website about Acceptance Commitment Therapy that also includes a list of trained professionals in Australia. If you’re overseas then I recommend you google Acceptance Commitment Therapy and locate someone close to you.

http://www.actmindfully.com.au/?gclid=Cj0KEQiAneujBRDcvL6f5uybhdABEiQA_ojMgm2tf_fLhJ8apU0cLDF2tx2OlZNx-3Qxv62V-uOVnH0aAqSE8P8HAQ

You might also like to read Russ Harris’s book ‘The Reality Slap’ which specifically deals with applying ACT to a life crisis. His first book ‘The Happiness Trap’ is also a great introduction to ACT and explains why he has some issues with the whole ‘positive psychology’ movement. Nobody is happy all the time. We’re not made that way.

If you’d like to join me on my own exploration of ACT then here’s the first thing you need to know. ACT requires you to act. I have loved the cello my whole life. Great cello music can move me to tears. I know about the history of the cello, the different styles of playing it and how different kinds of wood are used to give it that beautiful tone. I know about the difference between metal stings and gut strings and what makes a good bow. None of this knowledge enabled me to play the cello. To do that I had to be humble enough to be really bad at it for long enough to learn how to do it well enough to create a beautiful sound.

ACT is like learning a musical instrument, or learning to drive. You need to practice it to be good at it.

If you’d like to play along with me then between now and my next post, notice what you do with your own fears. If you’re also a cancer survivor you’ll probably be using some of the same strategies that I’ve been using. Even if cancer isn’t your big fear there is probably something else that intrudes upon your life on a regular basis. Our mind’s ability to forecast and imagine danger is part of our survival. Perhaps we had ancestors that were optimistic all the time but they probably got eaten the first time they wandered joyfully across the savannah, ignoring the twitch in the grass.

So regardless of your cancer status, your mind, like mine, almost certainly tries to frighten you on a fairly regular basis. When this happens write down what the fear was and what strategy you used to deal with it. I’ll be back next week with some ideas for finding better ways to live a fulfilling, meaningful life in spite of our fears.