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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Digging a Hole with my Brain

This is not unexpected. Just about everyone that finishes treatment has head noise that sounds something like this:

“I want to celebrate but I don’t feel like it. I’m still recovering from treatment. There’s the sweats and metal mouth and the peripheral neuropathy thanks to the chemotherapy, there’s the scar and the numbness and the strange electric-like pulses through my breast thanks to the surgery, and there’s the skin damage and fatigue caused by the radiation. But it’s more than that.

There’s a sense of not being sure who I am any more. Cancer walks into the middle of your game and throws everything up in the air. It steals the board and kicks the table over. There’s no point trying to pick up where you left off. It’s going to take a new game.

I want to celebrate but some part of me whispers caution.

What if it comes back?

What if it’s already back and I don’t know it yet? Does thinking that mean it’s true? Is that my intuition talking and warning me that it’s back?

Does even having the thought that it might come back mean that I’ve reduced my chances of staying well? Can I think myself sick?

Isn’t it the case that, with hindsight, I recognised something was wrong in the months before I was diagnosed. Makes sense. It’s my body. I live in it. If something is wrong with it then some part of me must know that. Right?

Right?

Maybe I should have a scan. Just to be sure. Just to be safe. But then I’ll be right back here in a couple of weeks, still uncertain. There really is a limit to how many scans you can safely have.

I want to celebrate but celebration means letting go of all the really good things associated with being a cancer patient. It’s not a great way to be the centre of attention and the focus of so much love, but there you go. It is. The people that love me have gone out of their way to take really good care of me. I have largely been relieved of any regular chores. It’s been lovely….well, apart from the cancer and the side effects.

I want to celebrate but maybe this is just the calm before the storm. Maybe this is just the support act for the main event. Maybe this was just to get me ready for the highly aggressive metastasising cancer that is yet to come. …”

And so on….

I call this ‘digging a hole with my brain’. You can see why. Here’s what I do about it. I write it down and then I rewrite it. Here’s what I get:

“Everyone has cancer all the time. I know that now. We don’t all have terminal cancer, or even tumours, but we all have the mutated cells with the potential to become cancer swimming around in our bodies all the time. Will I get cancer again? I already have it. (I know this doesn’t sound very positive to some people but it’s strangely reassuring to me). The question is whether any of those cells will trick my body into providing a blood supply. I know that there are lots of things I can do to help prevent that from happening. They include eating a diet that focuses on lots of organic fruit and vegetables with some organic meat and a lot less processed food. I can also maintain my commitment to not drinking, manage my stress, keep up my yoga and increase my meditation. I can focus on being happy as a genuine strategy for improving my health because I know it’s not just about my mental health but my physical health as well; happy people have better immune systems, longer lives and lives worth living.

Concerns about the cancer returning are normal and expected. I don’t need to focus on them. I can acknowledge them in the same way that I notice the weather. It is what it is. Work with it. Don’t define it as ‘good’ or ‘bad’ it’s just weather. So when the doom and gloom hits me I should just look at it like a passing storm cloud and let it float away.

Yes, I’m not sure who I am any more but there’s good in that. I’ve broken some old habits. I’ve lost some not-so-good friends and found some new ones. I’ve sat quietly with death, holding hands, until we were comfortable with each other. This is a great opportunity to redefine who I am, what I value and what’s going to be important for me as I head into the future. I’ve had great help from the psychologist at the Oncology Clinic and I now feel very clear about what kind of life I want, what really matters to me and what sorts of activities I want to be involved in.

It is hard to let go of being the centre of attention but it’s also great to let someone else take the spotlight and to be the one doing the caring for a change. My husband has surgery coming up. It’s an elective treatment designed to reduce his snoring and apnea and he postponed it when I was diagnosed. It will be an opportunity for me to return a fraction of the care he’s shown me. This is how families work. This is how close relationships work. We take turns. I’ve had mine and now it’s going to be great to help other people. I know from the work I’ve done on what I value that I really enjoy helping people. It’s a big part of who I am.

When it comes right down to it I need to face the possibility that the cancer might come back and that it’s okay to have that thought. For all the fans of ‘The Secret’ and other beliefs around manifesting what you imagine, there is absolutely no basis for believing that my attitude or my beliefs will either prevent or cause cancer. This dangerous school of thinking essentially blames everyone for their own diseases. I know that a positive attitude helps my immune system and makes me nicer to be around, but it won’t prevent cancer, any more than having a negative thought will cause it. For proof, just ask people that work with cancer patients. The truth is that some relentlessly positive people die while some depressingly pessimistic people recover. This is good news. It means I don’t need to beat myself up, ever, over anything, and particularly not over whether or not my thinking might kill me. It won’t.

Yes, the cancer might come back, and it might not. It’s not true that there’s nothing I can do about that and I’m going to do what I can to improve and preserve my health, but it might come back anyway. If that happens I will have the comfort of knowing I did what I could to prevent it (and this was a big part of giving up drinking) and the knowledge that I’ve put my body in the best possible position to fight it again. I don’t want to fight it again. I will if I have to. I also won’t worry about that because worry is just using what might be to suck the joy out of what might be!

This is life. Unpredictable. Chaotic. Messy and wonderful. Life. It sure beats the alternative.”

And so on…..

I’ve decided that it’s okay to move into recovery without a big celebration. While it is a transition from active treatment to recovery, the journey to good health isn’t over. I’m going to need some time to rebuild my strength and to recover from treatment. I’m going to feel better as time slides past and I reach the two year mark, and the three year mark, and the five year mark.

I like the idea of declaring myself well at some point in the future and celebrating then. When I’m feeling strong and vital and healthy again I’m going to feel like a party. It’s okay not to feel like one now.

Instead I’m going to focus on resting. One week of serious resting and then I start to slowly, slowly rebuild. This is the new version of me. In some ways very like the old version of me and in other ways completely and utterly changed. I am stronger than I knew. I am wiser for the experience. I am greatly loved.

I am alive.

 

 

But I Don’t Need a Psychologist!

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Status report:
I’m just over half way through radiotherapy. I’ve got 14 daily sessions to go. So far my skin has become a bit pink by the end of the week but there’s no burning, blistering or peeling. I am greatly relieved.

I’ve managed to overcome the impersonal nature of the treatment by learning the names of the various technicians and engaging them in brief conversation each day. We share tiny bits of information. Be become more human to each other.

I’m also unplugging their iPod full of hits from the 80’s and plugging in my own music. It’s the same meditative selection that I used through chemotherapy. It’s a way of making the treatment room temporarily mine.

I’ve become very good at keeping very still. It makes treatment go faster. I’ve even memorised the marks on the table where the foam leg rest should be and I move it there each time. It means that when I lay back into the body mould they’ve made for me I need very little adjustment. Adjustment involves people with cold hands manually moving you to line up with laser generated markers so minimising this is a good idea. I know to keep still, to pretend I am a bag of wet sand, and to let other people move me into position. Helping isn’t helping.

Meanwhile my body continues the long recovery process. My hair now looks like a deliberate choice rather than a medical aftermath. It’s much thicker too. My eyelashes are fully restored and my new eyebrows are so well shaped that I don’t need to pluck them any more. On the flip side there’s the return of the chin hair. My pubic hair is just ridiculous and I may shave it and use it to make a wide brimmed felted hat! My fingernails are just days away from growing out the chemo damage and the line in my biggest toenails that marks my treatment is slowly moving upwards.

The chemotherapy induced menopause is a bonus from my perspective. I was well past my child-bearing years when cancer struck. The hot flushes and night sweats have become less frequent and less severe. They’re a welcome alternative to menstruating. The predicted mood swings haven’t happened. If I cry it’s with good reason and I don’t cry often. I don’t churn negative emotions into negative behaviour. I use my words.

I’m still in considerable pain. I don’t think this is related to the radiation treatment. The peripheral neuropathy caused by chemotherapy has left me with painful hands and feet. It’s much worse in the morning when I can’t form a fist with either hand. Sometimes the pain wakes me at night. I’ve also got pain in my elbows which seems to be related. My right elbow is particularly bad and I’m using my left hand for anything weight bearing. My lower back is sore and I think this is related to the difficulties I have with my feet. I try to make a conscious effort to stand straight and walk well but I find myself hobbling like a caricature of an old lady. My trusty Birkenstocks make the back pain worse. Way back at the beginning of all this when they scanned me for other cancer I was told I had arthritis. At the time I laughed it off, given the significance of the cancer diagnosis. Now I wondering if any of this pain is arthritic.

In spite of all this my mood continues to be great. I’m almost at the end of treatment and looking forward to declaring myself well. I know I’ve still got six months or more of recovering from side effects but I’d much rather recover from side effects than be killed by cancer. Daily I prove that it is possible to be happy in spite of chronic pain, in fact, it’s possibly the best way to cope with it. I now know that happiness is not a random mood that descends upon me from nowhere only to vanish of it’s own accord.

The biggest lesson from the whole of my treatment is that I really can choose to be happy, and using a few simple strategies I can achieve happiness most of the time. I had learned about all of this prior to my cancer diagnosis but some part of me didn’t believe it. I dismissed it as just so much new age psycho-babble. I believe there are times when I may have actually said “Try telling someone with a cancer diagnosis to choose happiness and see how far that gets you.” Turns out I can choose to be happy. Even with cancer. Even with pain.

Recently my happiness took one giant step forward. In spite of my reservations about some of the content in Jacqueline Helyer’s relationship workshops, I am pleased to report that it did serve as the catalyst for improving my relationship with Graham. We are much more intimate. I have fallen in love again.

So why did this week see me spending an hour and a half with a psychologist?

Well firstly, it was free. The Radiation Oncology Institute where I’m having treatment has a psychologist on staff for all patients. Gratis. This is worth knowing if you’re due to start radiation treatment, or any other form of cancer treatment. Private facilities in particular are increasingly offering free or cheap psychological support for patients. Some public hospitals are also introducing in house psychologists. Where they’re not available on site, it’s often possible to get a referral to a psychologist and your GP can refer you if your specialist can’t. It’s my opinion that everyone can benefit from spending some time with a psychologist. Here’s why:

We all have different filters that we use around friends and family. We are careful about how much information we share and what emotions we choose to express. Yes, you’ll sometimes meet someone dealing with cancer that behaves like a spoilt three year old and demands that everything be about them, but most people continue to be considerate of those around them. You don’t need a filter with a psychologist. They’re a professional, impartial listener trained to help you get back in touch with how you’re really feeling, without pressure from anyone else.

Prior to spending time with Kerrie, the resident psychologist, I was fairly sure that I was travelling along pretty well. A visit with Kerrie confirmed this. This doesn’t mean it was a waste of time. It was possible that I’d walk into her office and fall in a heap, finally able to let my guard down. Checking in with someone professional can be hugely beneficial either way.

I’ve heard people say that a psychologist is a waste of time because they won’t tell you anything that you don’t already know. My response is that sometimes it’s really helpful to be reminded of what you know. Sometimes we forget. A good psychologist will also reassure you that what you’re feeling is normal, expected, human and appropriate. Sometimes, when we are feeling overwhelmed, this is reason enough to see one.

Psychologists spend a lot of time just feeding what you say back to you. “What I’m hearing is………….” “So if I could just summarise, it seems you’re saying………….” “You seem to be having some emotion around X. Would you like to tell me more about that?” It can initially feel very contrived but this technique is great for helping people think out loud. It also respects our ability to come up with our own answers if we’re given the time and the safety to do it. I like it very much for that.

Friends tend to give us well meaning advice. Sometimes this is a bit like you telling me you’re having trouble seeing and me handing you my spectacles. I’m sure they’ll help you. They certainly help me! Psychologists don’t ‘solve’ our problems for us the way friends do. They provide us with a confidential, safe environment that supports our growth, but at our own pace and in our own time.

Of course, not everyone has the ability to unravel their own problems and knit them into a new way of being, or to do it consistently. Psychologists can offer us tools to help us change. Whether it’s something as simple as taking a couple of deep breaths to calm down or something as complex as a diary to record and rewrite destructive internal dialogue, psychologists know some great, proven strategies for helping us to improve the quality of our lives. They don’t have prescription medications to ‘cure’ us because the work they deal with can involve time and commitment. Change is always fuelled by effort and growth is often preceded by pain. A good psychologist helps us to understand that, no matter where we are, we walked there with our own two feet and we’ll need to walk out of there the same way. Nobody is going to carry us.

Perhaps that’s the reason that so many people avoid seeing a psychologist; it’s likely that they’ll call us on our denial. It’s possible they’ll see through our self delusion. It’s likely they’ll hold a mirror to our obfuscation.  That’s precisely why we should see them. They can help us to break out of unproductive or unhappy patterns. They can shift us closer to happiness. It’s true that we may get there on our own but I think a psychologist can provide a short cut, or at least a road map.

What they won’t do is make you lay down on a couch and talk about you childhood, or your past trauma, or something acutely humiliating……..unless that’s what you need to talk about. This Hollywood stereotype of ‘therapists’ is possibly also responsible for frightening some people off.

It’s worth knowing that a psychologist is not the same thing as a life coach. ‘Life Coach’ is a relatively new term and there are no specific qualifications required. I could have cards printed tomorrow calling myself a ‘Life Coach’ (or a counsellor for that matter) but I could not call myself a clinical psychologist without a degree, supervised practical experience and professional registration.

If you’re wondering how they’re different to psychiatrists, the practical difference is that a psychologist can’t prescribe medication. The therapeutic methods are very similar. Psychiatrists have all trained initially as doctors and then chosen to specialise in psychiatry. A psychologist does a degree in psychology followed by practical training in counselling. They’re both good, although in my experience some psychiatrists seem far too enthusiastic about medication. While I have no doubt that antidepressants and other therapeutic drugs have saved the lives of some people with mental illness I also think that it’s sometimes a case of ‘If you like using a hammer then everything looks like a nail’.

As a result of an hour and a half with Kerrie I know that I’m travelling well. I am mostly, genuinely happy. I am appropriately emotional about the possibility of an early death, particularly if I contemplate my unborn grandchildren and the possibility of never knowing them, let alone sitting down to celebrate their 21st birthdays. I can easily get teary over the thought of my husband on his own, my daughter coping with babies without her Mum to help her, my Mum burying her daughter. This is just life. All of us have reason to be sad about the things that we will miss when we die. Cancer just puts these things in sharp focus.

And my early death is far from certain. It’s possible. That’s all.

In the mean time I’m going to be as happy as I can be for most of the time and appropriately sad when I need to be. Life is wonderful. Precious. Joyful.

I’ve made another appointment to see Kerrie when I finish radiation therapy. The end of treatment can be a difficult time for a lot of people and it’s possible I might need some help. Even if I don’t, I know that having the opportunity to check on my mental health is as important as any of the regular checks I make on my physical health.

I probably don’t need a psychologist. I’m going to see one anyway.

I Wasn’t Always This Happy

 

 

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These last few weeks my daughter has been waiting on some important news. She’s applied for a job as a college fellow at the university she’ll be attending next year. The job involves living in one of the residential colleges and providing advice and support to resident students. If she gets it, she and her partner will effectively have free accommodation on campus. This will make life at university much easier for her.

She was happy with the interview and was told she would hear something ‘early next week’. By Thursday of the following week she still hadn’t received a call. Meanwhile, the start of the university year is looming and she’s mindful that all of the good, cheaper apartments off campus are being snapped up. She’s stressed. It’s understandable.

She calls on Thursday afternoon to be told that they were initially interviewing for just one college but have now been asked by the university to fill all of the colleges with fellows. It seems everyone else forgot to advertise. The woman coordinating the panel now has a much bigger job on her hands and won’t be able to give my daughter an answer until ‘early next week’, but she lets her know that she was ‘impressive’, so things look positive. My daughter is stressed. Her partner has his honours year this year, they don’t know if they’ll need a car and the time for organising a move is diminishing. I can hear her grind her teeth from across the room.

‘Early next week’ comes and goes and by Thursday my daughter is about to combust. I want to find a way to reduce her stress, to help her enjoy today and to accept that nothing she can do, including all this worry, will have any impact at all on the outcome. I resist the temptation to give her unsolicited advice about stress management. I listen. We go shopping. We go to the movies.

I remember that at her age I would have been so much worse than she is. By now I probably would have sabotaged any chance I had at the position by phoning the woman and telling her that if she can’t be bothered ringing me she shouldn’t promise to do so.

I also remember that my daughter has had a lot more going on in her life this last year, including dealing with the fact that her mother has cancer. Looking at her reaction in context, she’s amazing. The stressed behaviour reminds me of me but the patience and the grace with which she speaks to this woman when she does finally get in touch, that’s all her.

Closer to the present day I remember that I spent the whole week after surgery feeling great. This is traditionally a horror week for anyone with cancer as you wait for pathology results. I honestly only had a couple of moments when fear stuck it’s head out of a dark and nasty hole. I simply looked away. I took a deep breath. I remembered to look around me and to anchor myself in the present, to be grateful for everything and to be happy. I’ve come a long way.

If you had told me when I was my daughter’s age that happiness was a choice I would have argued with you. I would have defended my seething anxiety with a list of things that were causing my lack of happiness. You would have retreated. Not because you were wrong but because I was so aggressively argumentative that it was a waste of your time trying to cheer me up.

Arguing was something of a family sport in our home, and I was well into my adult life before a kind friend pointed out to me that nobody really appreciated my portable soap box and my authoritative tone. Kindness is more important than being right. Being argumentative makes you unpleasant company. There are times when it’s a great skill and I’ve used it to good effect in a number of professional situations, but I still remember after making a speech at someone’s farewell, a junior staff member turned to me and said, “I’ve always thought you were really hard and intimidating but there’s a nice person in there.” Ouch.

My first marriage ended, essentially, because my husband didn’t make me happy and I didn’t make him happy. Both of us now recognise the dysfunction inherent in that statement. We are both happy now, but not because we divorced. We choose to be happy. I am grateful that we have also chosen to remain friends.

The reason all of this becomes relevant right now is that I know there are people that think I’m just this positive by nature. I’m not. It took a lot of work to get here. 

A woman at the gym this week told me that she wished she could be as positive as I am. She called me ‘inspirational’. I thanked her and told her that there was no reason she couldn’t be this positive. It’s certainly not as simple as just making a decision but nothing changes without that first step. I know a lot of people think that their personality is set. I hear them say ‘I’m just anxious by nature’ or ‘I’ve always been a stress head’ as if there’s nothing they can do to change that. I used to sound like this.

My occupation left me very angry. Wait, I should rewrite that.  When I was a police officer I was often angry, and I still feel angry sometimes about the things I saw. Child protection work in particular, and policing in general, can be a strong source of anger. There are so many things you can’t change, so much injustice, so much tragedy. It’s sometimes overwhelming. Learning to be happy in spite of it is not a simple thing.

I’m also fairly political by nature. I’m interested in what’s going on in the world, particularly regarding climate change, the rights of women, the safety of children, the protection of wildlife and a whole range of other issues. If I’m not careful, I can easily slip into anger about any one of these issues.

There’s nothing inherently wrong with being angry. It’s just personally destructive if you can’t do anything with it. Being angry with cancer has been part of how I’ve dealt with it. ‘Fuck You Cancer!’ is not a Buddhist matra, but it has been part of my strategy for keeping my thinking where I want it to be. Anger can be an excellent antidote to misery. My rage has been specific, isolated, targeted and occasional.

But happiness is my default setting. I really am happy most of the time.

It’s my observation that there are some things we can’t do very much about. They include our height, our underlying body shape, the colour of our eyes and our genetic propensity for inherited diseases. The things we can do something about include our weight, our level of fitness, the quality of our diet and our happiness. Change in any of these areas will require a strategy and some effort. Our success is entirely determined by our own choices.

The good news is that if someone as intense, argumentative and stressed as I was can do it, then you can too. 

If you are one of those naturally happy people then thank you. You’re a source of joy in the world, a pleasure to be around and a cherished friend to those that know you. Your example is a lesson to the rest of us.

If you’re not naturally happy then know that happiness really IS a choice. But it’s not just a choice. It’s also some hard work. The starting point for me included some very enlightening books.

Books: There’s so many including lots of recent ones on the art of happiness and positive psychology. Go online or to your local bookshop and have a look. Find something that appeals to you and start reading.

Two of my favourites were ‘Learned Optimism’  and a brilliant book by the guy that helped develop cognitive behavioural therapy. I wish I could remember the title. There’s lots of books on CBT and many of them a lot simpler than his, but I particularly enjoyed his list of dysfunctional thinking styles. Here’s the link to ‘Learned Optimism’. The same author has recently had another book on happiness become a best seller. I must remember to get hold of it.

http://www.bookdepository.com/Learned-Optimism-Martin-E-P-Seligman/9781442341135?redirected=true&gclid=CI7Gmd-tyrwCFcEnpQod7jkAVw

I also found Daniel Goleman’s work on emotional intelligence really helpful. His journey began with wondering why a high IQ didn’t guarantee you a successful life. Here’s a description:

http://www.booktopia.com.au/emotional-intelligence-daniel-goleman/prod9780747528302.html?source=pla&gclid=CLK5tLrZzLwCFQQipQodcGYAIA

I also remember that M Scott Peck’s book, ‘The Road Less Travelled’ had a huge impact on me in my 20’s. It seems that each generation has a ‘self help’ book that becomes popular and I’m not sure this one has aged well, but at the time it helped me to identify a propensity for blaming anything I didn’t like about myself on other people or on external circumstances. Helpful.

I’m a reader, so books are always a good starting point for me. You might also like:

Courses: Over the years I’ve done short courses on stress management, meditation, mindfulness, dealing with anxiety, assertiveness (friends will laugh but this course actually helped me to express myself in less aggressive ways), Myers Briggs personality type (great for developing a tolerance to difference and an understanding of other people), and happiness.

Look for a local Buddhist centre as a good starting point. They usually have very good, low cost short courses. Buddhism has a lot to teach us about having a happy life, even if you don’t buy into reincarnation and karma.

Online: Apart from a couple of great Facebook pages, this hasn’t really been part of my strategy so far but it could be in the future. You can now get online courses, aps for your phone and a whole range of resources on positive psychology and happiness.  There’s even cognitive behavioural therapy aps to help you with your automatic negative thoughts.

You’ll almost certainly find, as I did, that change is not as simple as just reading and understanding something. I found that I sometimes needed to go over the same material several times before it ‘took’.

There’s a world of difference between understanding something and having that understanding lead to a change in behaviour. If you doubt this then consider that most smokers and most drinkers know it will damage their health but they continue with the behaviour. Most of us now have an understanding of what healthy eating looks like but I know very few people that consistently eat to those guidelines. If you’ve ever worked to change a bad habit you’ll know that the process usually includes a cycle of making a commitment, starting strong, trailing off and then recognising you haven’t stuck to the plan. At the end of that cycle you can decide to give up, or to go back to making a commitment and to going around the cycle again.

Try to think of it as an upward spiral rather than going around in circles. This is what change looks like for most of us. You are not failing.

I’m still working on being a better human. I will be until the day I die. I’m happy with my progress but there will always be room for improvement. The rewards are worth the effort. My life is so much better now than it was in my twenties, and I like to think that my own work has also meant that my daughter started further ahead than I did. Yes, she still gets stressed but happiness is her default setting too. She worries that I see the worst version of her because it’s me she comes to when she’s upset or angry. My response is that if this is her worst version she’s a remarkably evolved person.

More than three weeks after her interview my daughter finally got back in touch with the woman that had failed so many times to call or email her. She got the job. Listening to her on the phone I was impressed by her calm, and her compassion towards this woman who had suddenly found herself lumped with a much larger job and no clear budget for it. The woman apologised and acknowledged how stressful the process must have been for my daughter. At the end of the phone call, all signs of my daughter’s stress had evaporated and she was celebrating her new job.

I know at her age I would not have been so diplomatic. I know at my age I have become someone who would have no trouble dealing with a similar situation without becoming a puddle of nerves. Change is possible. The rewards are worth the effort.

 

POST SCRIPT: Since I wrote this post I’ve read “The Happiness Trap” by Russ Walker. It’s completely changed by thinking on the subject of ‘negative emotions’ and how to have a happy life. Short version; my daughter’s ability to make room for all of her emotions is very healthy.

Go To Your Room, Cancer!

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After last week’s blog I’ve been thinking a lot about the extent to which cancer has become a central focus of my life. This has been necessary.

During the first few months of diagnosis there’s a lot of learning to do, sorting out the facts from the fable, making decisions about treatment and then figuring out the best way to support that treatment.

I’m five months in now and it’s time to start shifting the balance.

My new habits are well established. I’m eating really well and we’re all benefiting from a mostly organic, made from scratch diet of healthy food. My skin has never looked better and my fitness is great thanks to my regular yoga and gardening. Meditation hasn’t figured as much as I thought it would but my yoga is a kind of ‘moving meditation’ and my gardening is also meditative. I still need to drink more water.

I’m continuing to cope really well with treatment and most of the time I feel healthy. I’m taking extra precautions not to catch anything, including using hand wipes on shopping trolleys and washing my hands compulsively.

The mental shift that came with my diagnosis has now become my default setting. I worry less about the small stuff. I’m kinder. I’m a lot more relaxed about a whole lot of things, including my ‘to do’ list. I’m more interested these days in my ‘want to do’ list.

I decided this week that it was time to diminish the importance of this disease. I am sending cancer to its room! No more constant vampiring of every conversation. No more chewing up my Facebook page with endless details of my chemotherapy, side effects and progress. It’s time to start shifting the balance. I want to tip over into being me again, rather than everything being about this disease. It just feels like the right thing to do.

Certainly it’s getting boring. I think having such good results so early has allowed everyone to relax. Friends and family are now certain of my recovery. “We always knew you’d be like this. We knew you’d beat it!”

Of course I haven’t beaten it. Far from it. I still have a primary tumour to deal with, surgery in January, radiation therapy for six weeks after than and then three to five years (depending on who you ask) with a very high rate of recurrence and the risk of metastasising tumours in my major organs. But I don’t need to walk around with that pinned to my forehead! I can certainly understand everyone else’s desire to think of me as ‘cured’ or ‘clearly going to be cured’ so they can stop worrying and get back to their lives.

I think it’s much better for everyone, including me, if I start to diminish the significance of cancer in my life, in the same way that I’m managing to shrink away the tumours in my body. I don’t want to be defined by cancer. I want to be able to laugh and love and enjoy the company of my wonderful friends without cancer being perched on my shoulder like a vulture. I don’t want a pink ribbon tattoo, or hat, or T-shirt. I just want to be myself again.

I’m putting cancer over there, in its own little room, where I will visit it when I need to. I’ll pay attention to it on Mondays when I have chemotherapy and when I have appointments with my doctors. I’ll look in on it from time to time to make sure it’s getting smaller and smaller and I look forward to the day when I can disinfect that room and use it for something beautiful and useful.

As part of fighting my remaining tumour I’ve invented an imaginary creature for my visualisations. He looks exactly like the best cat I ever owned, a huge mackerel tabby called Toby, but he’s called ‘The Paclitaxel’. Toby used to be my constant gardening companion, inspecting everything I did and chatting to me while I worked. We’re pretty sure he was part Siamese, due to his language skills. He used to come into bed every morning for a cuddle and could be relied upon to perform purr therapy any time I was unwell. He lived for 15 years before dying suddenly of what the vet thinks could have been a stroke or a tumour. I couldn’t bare to have him autopsied so we don’t really know. We cried for days.

It’s been wonderful to reinvent him as one of my anti-cancer campaigners. He’s now assisting the cancer fairies in the end battle. He has the ability to self replicate and he shreds cancer with his claws and rips it apart with his teeth. Chemotherapy is now an adventure called ‘The Attack of the Paclitaxels!” So the room I’ve put my cancer in has a cat door. Let’s see how that tumour deals with confinement and a vicious pack of cats!

At night, all the Paclitaxels curl up together and purr. Cancer hates purring.

I’ll keep cancer here, in this blog, because the blog has been extremely therapeutic and an excellent tool for keeping my head in the game. I’ll also keep all of my facebook information about my medical progress on my positive3negative page, but my own facebook page will now be cancer free. I’ve put up a new profile picture of me with my beautiful daughter on a trip we took together last year. We are both so happy. I have hair. I’ve told all my friends that from now on I’ll be keeping cancer away from the page. I got a lot of ‘likes’ for that. I’m sure everyone is as bored with cancer as I am.

It seems to me that there is something very healthy in reducing the prominence of this disease. When I wrote last week about ‘sympathy addiction’ it struck a chord with a lot of people. Everyone seemed to know someone that leads with what bleeds; people that can’t wait to tell you about their latest health issue or personal drama, even when, in the overall scheme of things, what they’re suffering from is not really all that serious. Everyone is different and some people must need that sympathy and ongoing attention. I prefer to be happy, positive and a lot more fun to be around.

It’s time to start giving back. Making things easier for the people that have been taking care of me, extending my heart felt gratitude to those that have hung in there and making sure I thank all of the medical staff in a way that lets them know I really mean it. Not everything is about me…….and that’s a really healthy thing.

So I’m sending cancer to its room for the final stages of its death.

Release the Paclitaxels!

Does This Cancer Make My Bum Look Big?

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There’s a lot of stuff written about women and body image. It seems to me that it’s all ironic: while women are writing about body image, good or bad, they’re also perpetuating the obsession with body image. At the risk of adding to the irony, here’s my take on body image.

Look how you want to look. Wear what you want to wear. Stop judging others by their appearance. Value people for their kindness, or their intellect or their humour.

Stop telling little girls (or little boys) that they are pretty and start asking them what they think about something instead, or which book they’re reading, or what sport they enjoy playing.

It’s okay to express your opinion about your own body but mind your own business about anyone else’s. For example, “I choose not to have cosmetic surgery.” rather than “Nobody should have cosmetic surgery.”

Love your body. Without it you are nothing. Care for your health. Not to meet some arbitrary standard of beauty, but because your health is what sustains your body, and without it you are nothing.

That’s about it really.

I don’t worry about what famous people are doing with or to their bodies. I remember reading a piece by a 50-ish writer about how she was angry with a whole group of middle aged celebrities and actors for having cosmetic surgery and, in doing so, placing unwelcome pressure on her to do the same. It was a funny, well written diatribe but, even before I was diagnosed with cancer, it struck me as hypocritical. You can’t go on about wanting to be valued for your intellect, your humour, your compassion and your strength if you’re obsessing about how Cate Blanchett’s suspected eye-lift has undermined your confidence. Really?

I’m never bothered by what famous women do to themselves, other than being grateful that I don’t work in an industry where my personal appearance is so important that I’d let someone cut into my body. There’s a lot of banging on about the ‘message’ they send. The message I hear is that personal appearance is much more important if you want to be a celebrity than it is for anyone else.  I don’t aspire to be famous. I think having your private life (or someone’s made up version of your private life) printed in magazines is a special kind of hell. The idea of not being able to leave my home without being recognised appalls me.

I’ve known since I was a teenager that there’s only a very tiny number of women considered suitable for modelling, and most of them are made up and digitally enhanced beyond recognition. If you saw them in public you’d probably think they were a very tall, very thin woman but you wouldn’t necessarily find them beautiful. It never bothered me that a Vogue talent scout was unlikely to stop me in the street. I always thought modelling would be a very boring job with a short life span. I wanted to do something worthwhile with my life and spending it as a human coat hanger just didn’t cut it.

On the day I received my diagnosis, my husband said this to me:

“You are not your breasts. I want you to know that the most important thing to me is that you survive this. If you need to lose your breasts to do that then so be it. I love you. That’s not going to change.”

Beautiful.

I’d independently had exactly the same thought. I imagined myself with what I would call my ‘dolphin chest’, all smooth and sleek. I recalled my friend, Jo, who talks about how she looks at her mastectomy scars as evidence of a life-saving operation. She cherishes her scars, her body and her survival. I told my surgeon that my priority was best medical outcome and that any cosmetic consideration was secondary. If I needed to have both of my breasts removed to live, then I would do that.

Turns out I don’t need to. I’m not even going to lose the cancerous breast. I had my planning session with my surgeon last week for surgery in January 2014. Now that three of my tumours have vanished and the fourth looks like it’s on the way out, she’s planning on breast conserving surgery. I’m lucky because the cancer is in my naturally larger breast so she’s confident of a good cosmetic result. It’s possible I’ll get a breast lift as a bonus. Okay. Excellent news. I like my breasts and keeping them is definitely better than losing them. I’m still okay with losing them at some point in the future if that’s what I have to do to stay alive.

Since Angelina Jolie’s famously public double mastectomy there’s been a lot more acceptance of this option for women with a high genetic risk of breast cancer. Curiously, it’s not always the case that taking away your breast tissue will provide you with the lowest chance of recurrence. My surgeon tells me that taking the breast off makes no difference to my survival odds. She also tells me that there may be an advantage in having breast tissue; triple negative cancer has a high rate of recurrence and a tendency to metastasise somewhere else in the body. There’s a possibility that leaving breast tissue means that it’s more likely to appear there, rather than in a vital organ. It’s much easier to treat breast cancer when it’s still in a breast.

I’ve never been particularly vain. I’m not ‘high maintenance’ and I’m married to a man that thinks I look beautiful without the assistance of makeup, hair product, expensive clothing or uncomfortable shoes. I save dressing up for special occasions and he makes the appropriate complimentary noises when I do, but he’s inclined to grab the camera and photograph me when I’m out in the garden in my unflattering sun hat, wearing a man’s shirt for protection along with practical cargo pants. He says he likes having pictures of me looking as happy as I do when I’m gardening.

I adore him. Gentlemen’s Quarterly are unlikely to use him as a model but I love every inch of him. He is, simply, the most attractive man I know. You might not think so, but then you need to apply my standard for ‘attractive’ to understand what I mean.

My standard for attractive, whether we’re talking about men or women, is a simple one:

1. Attractive people are healthy. They don’t need to be rake thin but they’re not obese either. They eat healthy food most of the time and it shows. They also enjoy ‘sometimes food’ some of the time without being guilty about it. They enjoy staying fit. They have a vitality about them that’s appealing, regardless of their genetic inheritance. They don’t subject themselves to fad foods and diets.

2. Attractive people smile most of the time and laugh easily. Everyone describes themselves as having a good sense of humour but attractive people will be described this way by their friends.

3. Attractive people are kind and generous. It doesn’t matter how lucky you were in the gene lottery, if your unkind, greedy or mean you are not attractive. Attractive people tread gently on the planet. They stop the car to move an animal off the road. They minimise their environmental footprint. Their kindness and generosity is not limited to humans.

4. Attractive people have good personal hygiene. Yep. There’s no way around this one.

5. Attractive people are interesting. The use their minds. They know about all kinds of things and they’re happy to share their knowledge. They’re also interested in you.

6. Attractive people are positive. They talk about what’s good, possible, worthwhile, healthy, constructive and beautiful. They spend much less time than most of us talking about illness and pain, or complaining. They don’t gossip about other people. They look on the bright side.

7. And finally, attractive people are comfortable in their own skin. They don’t obsess about their appearance. They aren’t anxious about the size or shape of any particular part of their body because it’s all their body and they know that it’s the only one they have. Hating it means hating themselves.

When I want to work on being more attractive, this is the list I use. I don’t think wrinkles or grey hair or weighing ten kilos more than I did when I was thirty have anything to do with how attractive I am.

There’s a whole industry out there that tries to make us feel bad about our appearance in order to get us to spend money. But we don’t need to pay attention to their messages. If you don’t read ‘women’s magazines’ (really just endless advertisements) or spend too much time in front of the television then this stuff can’t touch you. If you surround yourself with people that appreciate you then the temptation to see your crows feet as a crime against the state will vanish.

I love my body. Right now I love the way my body is fighting cancer, coping with chemotherapy, enjoying yoga, making food and words and gardens and paintings. The last time I loved my body this much I had given birth to my daughter. My belly was stretched from pregnancy and it insisted on forming a loose bag of flesh beside me on the bed. My breasts were swollen and tender. I looked at my baby girl and thought, “I made another human with my body!” Now I look at my slides and check, over and over, that the three tumours are gone. I feel the dull pain of the remaining tumour caving under the impact of my excellent cancer drugs. Wonderful. Go you good thing.

Does my bum look big? I have no idea.

Lies, Damn Lies and Statistics

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A national chain of restaurants used to issue discount vouchers on the back of supermarket receipts. Over time, they found they had more success offering ‘one free main meal’ than offering ‘15% off the total bill’, even though the total bill reduction usually amounted to a much larger saving for the customer. Their conclusion was that most people couldn’t easily calculate 15% of a potential bill, but they had no trouble understanding ‘free meal.’

If you like a bargain you’ve probably got a quick method for calculating percentages, and it’s made easier by retailers sticking to simple numbers. We know that 50% of something is half, 33% is roughly one third, 25% is a quarter and 10% is a tenth. Anything else and we look at the price, move the decimal point one place to the left to give us 10% and then double it for 20% or triple it for 30%. Or we just go with the notion that any discount is better than no discount and the higher the percentage the better the deal.

It turns out I was wrong, as I sat in my high school maths class and audibly rolled my eyes wondering how percentages were going to be the least bit useful to me in the real world. Percentages matter. Particularly when you get cancer.

Cancer involves a lot of difficult choices about treatment. Everything comes with side effects and risks. It’s easy to get terrified. If you can’t get your head around percentages that terror can be paralysing.

Some people take the ‘ignorance is bliss’ approach. They place themselves in the hands of their doctors and hope for the best. I have an enormous respect and admiration for the majority of people in the medical profession but I also recognise their human limitations. People make mistakes. They get tired. They can’t always keep up with all of the current research. If you think about the number of patients most of these people see in the course of a day, a week, a month, it gives you an appreciation of their wonderful memories and their obsessive note taking. I’m more of a ‘knowledge is power’ kind of person. I want to be actively involved in my treatment. To ask intelligent questions and to make informed choices. I know that ‘what happens next?’ and ‘can we book that in today?’ are both good questions.

But oh those statistics! Let’s see if I can hose them down.

The first thing you learn about triple negative breast cancer is this phrase: “A poorer prognosis than other types of breast cancer.” Pause for a crying break. Contemplate mortality. Settle down and find out what that actually means. It turns out that ‘poor prognosis’ means you’re looking at a 75% five year survival rate.

To start with, you get your head around the five year survival rate. Figures for cancer are expressed this way because your chances of having a relapse are much higher in the first five years. The longer you stay cancer-free, the better your prognosis. If you make it to 10 years without a relapse your life expectancy is about the same as anyone else. You can start worrying about heart attacks and strokes like the rest of the population! The point about the five year figures is that it helps to remember that these are your worst numbers, and they improve over time.

The other thing to remember about five and ten year figures is that a relapse isn’t a death sentence. A relapse means a new set of statistics that will, understandably, be more frightening than your original numbers, but there is still a survival rate.

75% means I have one chance in four of being dead inside five years. It also means I have three chances in four of being alive. That’s the raw statistic. Initially frightening but from my perspective, worth knowing. When I’m feeling a bit slack about looking after myself, ‘three chances in four’ is a serious motivator.

But I think we can immediately improve on 75%. In order to give you a five year survival rate, doctors need to use data from people that have already survived five years. Makes sense. What this means is that you’re looking at numbers from people that received treatment five or more years ago. All over the world, and in Australia in particular, there have been impressive improvements in cancer treatment in the last five years. It’s fair to expect that when triple negative patients get their statistics in five years time our survival rates will have been better. I think it’s conservative to say at least 5% better. That moves us up to 80% without even trying. Eight out of ten or four out of five. So already we’ve improved on the original statistic.

Remember whenever you hear medical statistics that they are always historical. In an environment where technology and medicine are advancing at a cracking pace that’s important information.

It’s possible to massage the 75% by adding in your own circumstances. This number reflects all cases of triple negative breast cancers. It doesn’t usually get detected early and, in many cases, people already have a tumour in another part of their body at the time of diagnosis. It’s very aggressive and spreads quickly. If you’re fortunate enough to have it contained to the breast, as I do, then your odds improve. The sooner you catch it the better. You can also figure into survival rates your general level of health, your lifestyle and the other things you do to improve your odds. The 75% figure includes people that were smokers, drinkers, over eaters and drug users. It includes people with underlying conditions that impacted upon their treatment and people that opted not to have any medical treatment, or chose alternative over mainstream. All of these are factors.

The strong message from these statistics is that everything I can do to support my treatment and improve my health will help to improve my odds.

One of the biggest changes to the treatment of triple negative breast cancer has been neo-adjuvant chemotherapy, which I’ve been having. It involves having chemotherapy first, before surgery. The advantages include immediately treating the whole body for any cancer cells. It turns out that we all have cancer cells wandering our body all the time. Even people that haven’t been diagnosed with cancer and never will be. Everyone. The reason those cells don’t develop into cancer is that our body recognises them as deformed and kills them. At some point a cancer cell manages to evolve in a way that turns off the flag that marks it as foreign, and our body gives it a blood supply to help it grow. A tumour is born.

Having something in your system that targets not only your tumours but any other highly aggressive, notoriously metastasising cancer cells is a good thing. If I’d had surgery I would have had to wait at least four weeks for chemotherapy and there’s a chance the cancer could have already laid down another tumour in that time.

It’s also reasonably common for triple negative patients to develop another tumour in their scar tissue if they have surgery first. There’s a view that because surgery disrupts the blood flow to the tumour site it may make it more difficult for chemotherapy drugs to target any remaining cancer cells. The other advantage of neo-adjuvant treatment is that doctors can see if the cancer responds to chemotherapy and whether or not the tumours are shrinking. Triple negative isn’t one cancer. It describes a group of cancers that share a common characteristic. Once the tumours are gone, chemotherapy becomes ‘best guess’. With neo-adjuvant treatment you can see the impact, and hopefully completely melt the tumours prior to surgery. Fingers crossed.

This treatment improves the odds of triple negative patients. Research from the UK is finding that around 40% of patients receiving this treatment achieve full pathological response. That means their tumours are dead and surgeons remove the surrounding tissue just to check. For these patients, their survival rates are the same as patients with other forms of breast cancer (currently close to 90%). Fingers and toes crossed.

I think it’s also important to view your statistics in the context of overall life expectancy. As a 51 year old Australian woman the average life expectancy is around 30 years. I know that some people find staring death in the face an odd way to stay positive but this number puts everything in context for me. I was never going to live forever.

Hopefully that’s given you a better understanding of how the survival rate statistics work, but the real quagmire comes when you start looking at the treatment statistics. Depending on who you ask, or what your read, mainstream cancer treatment is either leading edge medicine or brutal experimentation with lousy outcomes. It reminds me of being pregnant; you will hear horror stories. I find statistics very useful when sorting through this barrage of information, misinformation and conspiracy theory. First some basics:

Cancer is not one disease but a whole group of diseases that have some things in common. They all occur at a cellular level and they all involve a deformed cell attracting a blood supply so that it can grow and possibly spread. Statistics that apply to one kind of cancer do not apply to every kind of cancer.

Chemotherapy is not one kind of treatment but a broad description for a type of treatment that involves using drugs to target all of the cells in your body that reproduce quickly, including your healthy cells. Cancer cells reproduce quickly but don’t recover easily from chemotherapy. Healthy cells do. Statistics that apply to one type of chemotherapy to do not apply the every type of chemotherapy. Statistics that apply to the treatment of one type of cancer with chemotherapy do not apply to any other type of cancer. As a simple example, the aggressive nature of triple negative breast cancer means it responds better to chemotherapy than other, less aggressive forms of breast cancer.

Radiotherapy statistics are also complicated. This is an area of medicine that has benefited enormously from advances in computer sciences. What used to be a therapeutic ‘blunt object’ now uses three dimensional targeting and computer imaging. Statistics for radiotherapy need to be considered in this light.

Finally, there is not one kind of surgery and the skill of a surgeon is a major factor in these statistics. I think the best recommendation for a cancer surgeon is that they have a reputation for only needing to operate once. I’m not talking about relapse here, but people having to go back into surgery within weeks because it’s clear from the biopsy that something was left behind. I want a surgeon that’s going to get it right the first time. Not all do and this influences the overall statistics.

Your doctor has access to data bases that help to calculate the possible impact on your survival rate of various types of treatment. I like these numbers. All of these treatments have side effects and risks. In some cases those risks are life threatening. Without some data you can be left feeling as if you’re jumping out of the frying pan and into a volcano. So, keeping all of the above qualifiers in mind, here’s my numbers and what I get from them:

What happens if I do nothing? This is always my first question regarding any medical treatment. It turns out that for triple negative breast cancer the five year survival rate with no treatment at all is around 46%. That’s better than I thought it would be. A good way to think of anything close to 50% is that it’s a coin toss. For me, that’s not a great survival rate.

How does chemotherapy improve that? Based on the historical data, by 16%. That’s lower than I thought it was and hopefully that number will get much higher as the neo-adjuvant data kicks in, but even without that, 16% is a significant improvement. I think of it as a lottery with 100 tickets in it and first prize is my life. I’ve already got 46 tickets (survival rate if I do nothing). Would I like another 16 tickets? Before I make that decision I want to know what’s attached to those 16 tickets. One of them comes with a possible long term risk of leukaemia or heart trouble but when I look at my age and my overall life expectancy I’m still prepared to take that chance, given that all 16 tickets improve on my coin toss of a cancer. Chemotherapy isn’t for everyone. For some people the risks outweigh the benefits. Information helps you to be comfortable with whatever decision you make.

I apply the same kind of thinking to radiotherapy and the risks associated with that. The difficulty with assessing radiotherapy is that until I know how the chemotherapy and surgery went, I won’t have enough information to apply specific statistics. The more invasive the cancer, the stronger the argument for radiotherapy. At the moment I’m assuming best case scenario and even on those statistics it’s looking like a good idea. The other complicating factor with radiotherapy statistics is that some people’s odds have already been affected by chemotherapy and some haven’t and your age also affects your chances. Younger women have a higher chance of cancer coming back than older women. You can see why I call it a quagmire.

It’s useful to look at general figures for radiation. The chances of cancer coming back for a woman that has a lumpectomy without radiotherapy are 36%, but with radiotherapy that reduces to 17%. If the cancer had spread to lymph nodes then the chances of the cancer coming back rises to 44% and the chances are reduced by radiotherapy to 9%.

Like chemotherapy, radiotherapy includes some serious long term risks. There’s a 1% risk (one chance in 100) of getting another kind of cancer within 10 years. There’s also a risk of heart attack that peaks at around 25 years. I’ll run my lottery ticket analogy again. If I add radiotherapy into the mix I can now have around 90 of the tickets in a lottery of 100 tickets where the first prize is my life. One of those tickets might mean fighting another cancer battle and I’m okay with that. One of them might mean a heart attack at 75. I told the radiation oncologist that if I have a heart attack at 75 I’ll send him a thank you card! He’s promised me flowers in return.

I hope all of this helps people make informed decisions about treatment. My strong recommendation is to ask all of your treating doctors for data and take a pen with you to write it all down. Some of the information might seem terrifying but once you get your head around it there’s some positive stuff in there. Importantly, it helps you make decisions about your treatment that you’re at peace with. Perhaps the greatest hell for anyone with cancer is second guessing your choices. What if…..Should I have……..If only I’d known……….  When doubt sets in it really helps to know that you took the time to take everything into consideration; the general statistics, your personal statistics, your own attitude to risk and complications and your comfort level with any form of treatment.

I’ve opted for everything mainstream medicine can offer me, supported by complimentary treatments. Some people choose to have only some forms of treatment or none at all. I respect everyone’s right to make their own choices while encouraging them to do the research to ensure that those choices are informed. ‘Trust your instincts’ is lousy advice. My instincts have often led me down dark alleyways to be beaten up by circumstances that a little critical thinking could have avoided.

Finally, the statistics remind us that we are much more likely to survive breast cancer, even triple negative breast cancer, than to die from it. And that’s a really good thing to keep in mind.