One Year Post Mastectomy

Fanfare please!

It’s been one year since my bilateral mastectomy.

It seems like an appropriate time to post an update on my recovery and to reflect on what’s helped, what’s hindered and what needs to happen during the next year.

There will be photos, so if you’re squeamish about scars then best skip this one.

The short version; I feel great. Lately I’ve actually been feeling well, really well, for the first time since my surgery. I’m amazed by the body’s ability to heal and surprised at how long it’s taking.

If you’d asked me just after surgery how long I thought my recovery would take I would have guessed three months or so. Even one whole year later there’s still a little way to go before my body is done.

This is important.

There have been times during the last year when I’ve thought, ‘Is this as good as it gets?’ It seems to me that healing will happen for a while and then there will be a plateau where nothing much changes. I’ve come to think of these plateaus as the body taking a rest from the hard work of healing.

The whole experience has been an opportunity for me to take a hard look at my life and my habits. I suspect there are people whose recovery is passive. They wait and hope, trusting that whatever medical treatment they received will do all the work for them.

It’s been my long experience that recovery from anything needs to be active. We can support or hinder our recovery with some very simple choices, like what we put in our bodies, how much sleep we get and how much stress we’re prepared to tolerate.

I’ve been actively participating in my recovery.

I’ve cared for my skin, particularly the site of my surgery, by using a body oil after my shower. I’ve also taken care of lymphatic drainage from my left side by using gentle massage throughout the day. This area has had a lot of damage following three surgeries and radiation. While I haven’t had any signs of lymphodema, I see regular lymph drainage as an important preventative measure. I’ll be doing this for the rest of my life.

I’ve lost weight using The Fast Diet. My doctor recommended this because there are statistics showing that excess weight can contribute to breast cancer risk. Fasting also triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Anyone whose experienced triple negative breast cancer knows that we don’t have any of the new ‘wonder drugs’ available to us. Fasting seems like the best thing I can do to prevent recurrence. I’ll be doing this for the rest of my life.

Yoga has probably made the single greatest contribution to my recovery. I do at least one class a week (two when my husband joins me) and I practice at home every day. When I wake up in the morning I get dressed in my yoga gear. I have coffee and check my messages and daily schedule and then it’s straight into yoga before breakfast. I’m able to do things with my body that I couldn’t do before I was diagnosed. Of course the point of yoga is not to twist your body into increasingly difficult poses. Yoga is about integrating the mind, the body, the spirit and the breath. Yoga has helped me to love my post-cancer body and to feel strong and flexible, mentally and physically. I’ll be doing this for the rest of my life.

Massage has also been a big part of my recovery. I found a local massage therapist with specialist oncology training. As well as regularly helping me to move back into my own body she’s gently massaged my surgery site and this has greatly assisted in settling all of the nerve pain and helping me to regain sensation in that part of my body. It’s also deeply relaxing.

I was eating fairly well before diagnosis and treatment has been an opportunity to review what goes on my plate. We’re shifting towards more and more vegetarian meals. I rarely eat gluten any more and I feel better for it. I’m naturally eating less food thanks to The Fast Diet and the impact on my appetite. We’ve adopted the SLOW principles as much as possible; Seasonal, Local, Organic, Wholefoods.

I’m eating much less sugar and finding that I can’t eat anything really sweet anymore. I suspect this is because fasting has killed off the gut bacteria that trick my brain into wanting more sugar. The recent discoveries in relation to the gut biome continue to fascinate me. I’m sure we’re only just beginning to understand how important this work is for our future health. It’s certainly a strong motivator to avoid processed foods with all their additives and preservatives that prevent bacterial growth.

Thanks to a couple of visits with a psychologist with ACT (Acceptance Commitment Therapy) training and Russ Harris’s books on the subject, I’m now very clear about what’s important to me, what I value and what I want my life to stand for. To celebrate my one year anniversary I’ve enrolled in a permaculture course. There are those that would argue I don’t need this training because I’ve been practicing permaculture all of my adult life.

My friend Cecilia challenged me to ‘become a world famous permaculture teacher’ which is what motivated me to finally enrol. She’s clever. I don’t really need to become famous (nor do I want to) but I really do want to teach the skills I’ve been practicing for so many years. Permaculture is simply the best way to be human and the map for the survival of our species.

One of my favourite quotes has always been ‘Be the change you want in the world’. When I was a teenager I looked at a photograph of the planet from space showing all of the lights of civilisation and spontaneously thought ‘human cancer’. I was distressed by the damage we were doing to the planet and a sense of helplessness. For me, permaculture holds the key to healing humanity’s cancerous impact on the planet. It’s probably going to keep me well too.

So here’s my latest photos.

As you can see, I’ve come a long way since surgery.

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My chest has gone from being almost completely numb to almost completely recovering sensation. I still have numbness along the scar lines and there’s an area of nerve damage above my original surgery scar (that’s the little arc high on my left side). Nerve damage feels like electricity under the skin. It’s continued to improve with massage and I’m hopeful that it will eventually disappear.

My chest still feels a little tight, as if I’ve got a large sticking plaster on it, but this has improved and I believe it will also vanish in time. For most of last year I felt like I was wearing an undersized bra (how ironic) and the tightness extended all the way across my back. That’s resolved now and I only have my chest to deal with. Yoga and massage both help with this.

I still need to remember to keep my shoulders back and to hold my body up. My doctor tells me it’s common for mastectomy patients to develop a stooped back and rounded shoulders. I suspect this is a combination of relieving that sensation of tightness and, perhaps, embarrassment at having no breasts. I regularly roll my shoulders up and back, particularly when I’m at the computer.

My neck has taken a while to adjust to the absence of two F cup breasts. Removing close to two kilos of weight left my neck and shoulders in a state of shock and once again, yoga and massage have helped. A friend showed me this neat trick; point your index finger at the sky; now bring your finger so it touches your chin and the tip of your nose; push back until you feel your neck is back in alignment. You can also push your head back firmly into a pillow when you’re in bed, or the head rest when you’re in a car. This simple exercise has had more impact on my neck pain than anything else.

As for the other side effects from treatment, I’ve also seen big improvement. I rarely experience any peripheral neuropathy in my feet. I still wake with sore hands but they warm up quickly. I need to be careful with any activity where I hold my hand in the same position for any length of time, such as drawing or sewing. My hands tends to cramp up and become painful. I haven’t given up on my body’s ability to regrow nerves. While one doctor told me I’d probably be stuck with whatever I had at twelve months post chemo, another said it can take six years for nerves to regrow. I’ve already had improvement since my twelve month mark so I’m going with option B.

I have a mild hum in my ears. This is probably also chemo related nerve damage but it could just be age. My Mum has age related hearing loss. It’s important to remember that not everything going on with our bodies is related to treatment. I don’t have that awful metallic taste in my mouth any more and I think this is also a form of peripheral neuropathy. Food tastes wonderful again, particularly straight after fasting.

I wonder to what extent the fasting has promoted healing. The science indicates that it should make a difference. In early days, I certainly noticed more rapid healing following a fast. I’ve observed that if I have any kind of skin blemish it’s usually completely healed after fast day.

As you can see from the photos, the radiation damage to my skin has greatly improved. As well as the circulatory benefits of massage, I think the regular application of rose hip oil has made a huge difference.

As you’ve probably already guessed, my mental state is great. People recovering from mastectomy are, not surprisingly, at high risk of depression. I’m very grateful that the care I’ve received and the work that I’ve done have helped me to avoid that particular complication. In many ways, depression is a worse disease than cancer and certainly at least as deadly. I think avoiding depression has involved a combination of things but particularly the information about ACT, practicing ACT and the benefits of yoga.

The most significant contribution to my state of mind has been the love and support I’ve received from so many people. Special mention must go to my beautiful husband who has continued to love and cherish me through all of this. I’m still beautiful to him. It’s an enormous advantage to have someone like that in my life and I grieve for those women that go through this on their own, or whose partners leave them during treatment.

I no longer experience ‘chemo brain’. I feel as mentally alert as I ever did. I’m also calmer, happier and less stressed than at any other time in my life.

I’m now taking stock and asking ‘What else can I do to continue with my recovery and to improve my health?’ I’ll also be doing this for the rest of my life. I believe that there is no upper limit to how well I can be. To put it another way, no matter how well recovered our bodies seems to be, there is always more we can do to improve our health.

Thanks to everyone that’s been following the blog and the accompanying Facebook page. Special thanks to those that have taken the time to let me know that something they’ve read has helped them with their own recovery. You’re the reason I keep writing.

Go well. Live well. My best wishes for your continuing recovery.

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Six Months Post Mastectomy

WARNING: This post contains photos of my mastectomy scars. Skip this one if you’re likely to find that upsetting.

It’s the eighth of February today. That’s six months since my mastectomy.

Anniversaries take on a new significance when you’ve had triple negative breast cancer because our highest risk of recurrence is within the first three years. By the end of five years our risk has dropped to the same as everyone that’s never had breast cancer. It’s one of the few consolations for having a form of breast cancer that’s typically described as ‘more aggressive and with a worse prognosis than other breast cancers’.

I thought you might like to know how I’m travelling.

In a word, brilliantly!

My wounds are almost (but not quite) fully healed. I’ve been surprised by how long it takes. There’s a period of rapid healing immediately after surgery, as I expected, but then there is also a long, slow healing where the scar tissue gradually loosens up and improves in both appearance and sensitivity.

I still get strange electrical pings from time to time, but nowhere near as often as I used to. The tightness around my chest had greatly improved, particularly across my back. Following surgery I had a strange stabbing pain in the centre of my back when my bra fastening used to be. If I rolled my shoulders forward it was worse. That’s completely gone now. So is the mysterious stabbing pain on the outside of my upper arm near the shoulder. My surgeon, Kylie, described both as ‘referred pain’ and I’m happy to be over it.

How to describe the sensation across my chest? I think if you took something like a clay mask,  spread it over your chest and let it dry you’d be approximating the sensation. It’s a little tight, but not painful. Kylie warned me that my chest would get tighter over time and then it would ease. I’m at the happy end of the easing process with hopefully a little way to go.

As the skin has loosened away from the muscle it’s become more comfortable. You can see from the photos that there’s now a little bit of a droopy bit, particularly on the right hand side. I joke with my husband that my breasts are growing back. Actually, it’s a good thing because I now look less like a mastectomy patient and more like a naturally flat chested woman. I’m doing some hand weights to build up my pectoral muscles and to give me a bit more of a natural shape.

Having said that, I’m now completely comfortable with my flat chest. I’ve had a lot of fun replacing most of my old wardrobe. My two favourite ‘looks’ are a beautifully patterned cotton shirt over a singlet with long pants, or one of those box shaped dresses that sits just above the knee. I didn’t feel comfortable wearing shorter skirts before my surgery but now I enjoy putting my ‘yoga legs’ (as Graham calls them) on display. I’m accessorising with beautiful scarves and long necklaces which now sit beautifully thanks to my dolphin chest.

The only pain I have is from arthritis in my hips and shoulders (which I would have had anyway) and the peripheral neuropathy in my hands. They are very sore when I first wake up but improve quickly with my morning yoga.

My recent followup appointment was with my radiation oncologist, Andrew. He reminded me that I shouldn’t give up on the peripheral neuropathy and that sometimes nerves take a very long time to regrow. He suggests waiting a decade before calling it quits. This is great news because Rachel, my oncologist, has warned me that whatever I had twelve months after chemotherapy I would probably be stuck with for the rest of my life. It’s not really a big deal either way. I can still type, obviously, and last week I finally returned to playing my cello.

It’s made me very happy to discover that in spite of the numbness in my fingers, the need to completely reposition my instrument and the poor playing that results from two years without practice, I can still read music and make a beautiful sound. The challenge now is to return to daily practice. Like so many things, the cello requires a regular small investment in order to reap returns.

Andrew and Rachel are in agreement about what we thought was recurrence. It’s likely that this was actually DCIS left behind after the first surgery rather than new cancer. Why does this matter? Well, there’s a huge difference between a bit of old cancer still growing away and a whole new outbreak of the disease, particularly in terms of my long term survival odds. Although I was initially shocked at the possibility that my surgeon had made a mistake I now consider it to be serendipity, a happy accident.

You see, what we know, thanks to Kylie’s ‘mistake’, is that the cancer I used to have was resistant to chemotherapy and radiation therapy. It is almost certain that I would have needed a mastectomy at some point. Having it when I did meant the tissue removed was free of cancer and that greatly contributes to my future survival. You don’t get better margins than ‘no sign of cancer in this tissue’. If Kylie had removed a bit more tissue in the first surgery I would still have potentially lethal breasts with no guarantee that we would have caught the recurrence before it had spread to vital organs. Everything has turned out for the best.

I know Kylie still beats herself up over leaving the clip and some of the tumour bed behind. I’m glad I’m not a doctor. They are human like the rest of us and that means that, sooner or later, they will make a mistake. It’s unavoidable. A world where it’s safe for them to acknowledge that and talk about it is a safer one for all of us. It’s not a metaphor when people say that doctors often bury their mistakes!

It’s an interesting thing to come face to face with your own mortality. Last night I lay in bed thinking about a new blog called ‘We are all dying’ or ‘live like you’re dying’ because I now believe that when you really understand this, all the way to your temporary bones, life becomes richer, more precious, more meaningful………if you let it!

It still sneaks up on me at odd moments. My husband and I will be watching something on the television and laughing or joking about it. I’ll suddenly feel overwhelmed by my love for him and all he’s done and been since I was diagnosed. One day we will both be gone. That makes being here so much more beautiful.

When we’re intimate I sometimes weep with the wave of emotion that floods me. He touches these scars as if they were precious. You’ll notice that the photos are the right way around for this post because I finally felt okay about asking him to photograph them rather than using a mirror and taking them myself. The photos still shock me. From this side of the scars it’s easy to forget. Graham has just adapted to incorporate this new version of my body. He’s so grateful that I survived. He loves me.

My daughter returned from Europe and we have two precious weeks before she returns to university. I want to follow her around and embrace her randomly. I am so proud of her. She could have walked away from her studies without anyone criticising her because, after all, her mother had cancer. But she stuck it out. Her marks dropped but she still managed to pass two of the hardest subjects of her degree. Because the last eighteen months for me have been about surviving I haven’t been able to support her as I would like to have done. Now I can.

Her physical and emotional health have suffered. She’s working on being well. It’s been a shock to her to contemplate a world without me in it and it shows. I wonder if she’s realised that, like me, she is also temporary. Maybe that’s not a concept you need to come to terms with in your twenties although I know from the many young breast cancer survivors I have met that there are plenty who do. I pray for a cure. I pray for a future where she doesn’t have to fear my genetic inheritance.

My six month anniversary present was news from the Mayo clinic in the USA. They think they might have a vaccine that prevents the recurrence of triple negative breast cancer. I want to put fifteen exclamation marks on that. I still cry with joy when I watch this:

http://www.usatoday.com/story/news/nation/2015/02/03/mayo-clinic-triple-negative-breast-cancer-drug-trial/22785941/

It’s too soon to call this a cure. They’re just starting trials and the trials may yet prove that the treatment doesn’t work, but hope is like rain in the dessert when you’ve had cancer.

So, as always, here’s the photos. This is what my body looks like after six months of healing and taking very good care of myself.

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P1070194As you can see, the puckering to the left hand side is much better and I’m reasonably confident that this is going to keep improving. I’m seeing a massage therapist that specialises in oncology at least once a fortnight and sometimes more often than that. I highly recommend it. I’m also brushing my torso with my hands each night to help promote lymphatic drainage. The lymph system sits just under the skin so you really just pat yourself like you would a cat, with long strokes down the body. I can feel the lymph moving when I do this. It’s a mild tingling sensation. I’m hoping this helps me to avoid lymphedema, a common complication of cancer treatment.

The skin on the left hand side is also much better. This skin was damaged by radiation therapy and that’s why you can see such a marked difference between the two sides. You can also see the arc of a scar from my original breast conserving surgery above my mastectomy scar. I’ve been using macadamia or hemp oil, perfumed with essential oils, after my shower and that’s helped.

The question I get asked most often is “Will you be having reconstruction?”.  My answer is still “No”. I am very happy with my decision to do the best thing for my health and have the least amount of surgery possible. Even with all of the weight I’ve lost I still have a little bit of a belly. I’m very happy to have it sitting where it has always sat rather than having it surgically relocated to my chest, with all of the risks, pain and recovery time that would have involved. Just the thought of more than ten hours under anaesthetic was reason enough to avoid it but I’m also happy about not having any more scaring than was medically necessary.

Everyone makes their own decisions on reconstruction and, if you’ve decided to have it, then I sincerely hope you are as happy with your choice as I am with mine.

I’m still not inclined to wear ‘foobs’ (fake boobs). I don’t think there’s anything about my appearance that need ‘enhancing’. Of course, I’m also the kind of person whose happy with my prematurely grey hair, my glasses over contact lenses and my habit of saving makeup for very special occasions. There are some clothes that I know would look better with a bit of a mound. Perhaps, in time, I might have a look at something to go under evening wear but so far, so good.

Emotionally I’m feeling great. Thanks to Russ Harris and the ACT skills I’ve been practicing I now have an effective method for dealing with fear of recurrence. Losing 14 kilos since surgery (and only two of that was actually cut off me) has made me very happy but it’s really The Fast Diet that’s been a major contributor to my emotional well being. I am now in a healthy weight range because of a method that’s sustainable for the rest of my life. I can still enjoy great restaurants and the occasional take away without fear or guilt. The evidence on the benefits of this way of eating and the implications for those of us seeking to avoid cancer continue to mount. I am certain that I am doing the right thing for myself, my body and my family.

I know it’s still possible that the cancer could come back. Cancer is like that. But I don’t dwell on it. I enjoy my life. No, it’s more than that. I CHERISH my life, because I finally understand how precious it is.

Fear of Recurrence: Part 4 (Mindfulness)

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I sometimes wonder if the people that developed Acceptance Commitment Therapy (ACT) based their model on Buddhist or yogic philosophy. There’s some striking similarities. One of the most obvious is the use of mindfulness as a technique.

It seems that mindfulness, all on its own, is enjoying a popularity surge at the moment. It’s the subject of books, TED talks and articles. Most people are at least passingly familiar with the idea of being present, paying attention to what’s right in front of you, or around you, rather than the chatter that’s going on in your mind.

When you’re dealing with the fear of a serious illness returning, mindfulness brings you from your fears about the future all the way back to the present. It reconnects you with the activities you enjoy and the people that you care about. In the context of ACT, it helps you to turn your attention to your values, and to take action consistent with those values.

Russ Harris explains that when you’re dealing with a distressing event (or you’re upsetting yourself by imagining one) mindfulness is not a relaxation technique but a way to anchor yourself.

Here’s a simple mindfulness exercise. As you’re reading this, pay attention to the device that’s displaying it. Look at the different textures on the surfaces of that device. Are they reflective or dull? What colour? What brand? Are you holding the device in your hand and, if so, what does it feel like? Or if it’s on a surface in front of you, what is that surface. What is it made from? Now look around the device. What can you see? What can you hear? What can you smell?

If you’re similar to me then mindfulness exercises feel like moving out of your head and back into your body. I have a mild sense of waking up or reconnecting with my world. Please don’t misunderstand me. There’s nothing wrong with using imagination to create dreams, explore ideas, imagine possibilities. The aim is not to be mindful all of the time, but to spend more time being mindful.

One of the easiest ways to do this is to focus on your own breathing. Try this now and then use it the next time you start scaring yourself with thoughts of illness or death. Put one hand on your chest and the other on your belly. Take five gently breaths and focus on your exhale being longer than your inhale. (This also helps to prevent you hyperventilating. Suck in too much oxygen and you definitely will not feel calmer.) Breathe through your nose if you can. Notice how your breath feels cooler going in and warmer going out. Try to breathe all the way down to the hand on your belly. Notice the way your hands rise and fall with your breath. Hold yourself gently and kindly.

As you do this, remember that you’re not trying to get rid of your anxiety. You’re just trying to anchor yourself during a storm. Those difficult thoughts and feelings will keep trying to frighten you. Notice them. Thank your mind for trying to warn you and protect you. Recognise what a great story teller you are.

Now shift your focus to your five senses. What can you taste? Many people experience a metallic taste when they’re stressed. What can you hear? You might not be able to hear anything other than your own heart or breathing or you might be able to hear music, or birds, or traffic. Just notice it without judgement. What can you smell? What can you feel? It might be just the air on your skin or the places where your body comes into contact with your chair and your clothing or you might notice the air temperature or a breeze. Finally, what can you see? Look around you and notice the detail. Where are you?

I think that part of the reason yoga and meditation are so good for reducing anxiety is that they both incorporate mindfulness. It’s a powerful way to put ourselves back into the present moment. When applied to ACT, mindfulness also allows us to think about what it is that we really value, and what type of action would make our lives more meaningful. Nobody expects you to come up with strategic plans while you’re frantic about the future but mindfulness can give you, quite literally, the breathing space you need.

Once you’ve weathered the storm you can revisit your values and put together plans to achieve things that are consistent with them. You’ll probably keep having scary thoughts. Cancer is terrifying! But these techniques will help you to have a rewarding and meaningful life in spite of your fears.

I don’t plan on writing a post about how to make plans and carry them out. I think most people are now very familiar with the SMART model and ACT incorporates it as part of the ‘Commitment’ part of the acronym. Here’s a link to the Wikipedia entry if you’re not already using SMART or you can google ‘SMART planning model’ for more information:

http://en.wikipedia.org/wiki/SMART_criteria

There’s whole books written on this model and there’s no doubt that people using it are generally far more likely to achieve their goals than those that don’t but this is not universally true. Not everyone needs or wants a structured planning model and critics would argue that being too structured can blind you to the surprises and opportunities that life puts in front of us. I suppose the acid test is how effective you already are at setting and achieving goals. If you feel like you’re going around and around in circles then I’d recommend going through the SMART process, writing things down and then checking in regularly to measure your success. Like so much of life, the key is to actually DO rather than just understand.

Even if you think you’re pretty good at achieving your goals I’d encourage you to give the SMART model a try. You might find that it helps you to take effective action and to achieve more than you already do. I used to use SMART in a work setting and find that after years of use I now naturally slip into this framework when I want to achieve something. Revisiting it from the perspective of ACT has made me keen to try using it for something other than work. I’ve always been a lot more ‘free form’ in my personal life, perhaps because work was so structured.

This is the end of my four part series on dealing with fear of recurrence and I hope you’ve found it useful. ACT is a collection of interrelated tools that have been proven to be very effective in dealing with everything from PTSD to giving up addictions. For me, learning about this model and putting these methods into practice has resulted in a significant improvement in my life. I am calmer, happier and clearer about what I want my life to stand for. Even though ACT practitioners are very clear that the model is not designed to reduce or eliminate troubling thoughts, I have, like many people, noticed a reduction in them as a side benefit of practicing these techniques. I’ve also found that Russ’s book for couples ‘ACT with Love’, has strengthened my marriage and increased my considerable love and affection for my husband.

If you’ve read about ACT and thought it was too simple, or too difficult or just not you then I’d encourage you to at least try some of the techniques. It’s possible that you’re right. It’s also possible that you just might expand your skills and improve your life. Surely that’s worth a bit of your time.

Here once again is the link to Russ’s web site.

http://www.actmindfully.com.au

I would highly recommend his book ‘The Reality Gap’ to anyone facing a cancer diagnosis or dealing with significant anxiety about anything. Just remember that reading the book and expecting your life to change is like reading a cook book and expecting to eat. ACT only works if you do it. Yes, some of it will feel awkward and strange and even a bit stupid but that’s how you’re always going to feel any time you’re brave enough to try something new.

As I write all of this I’m thinking about 2015. It’s the first day of that year. I love the new year. For me it’s always a time of reflection and gratitude. It’s also when I decide on what I’m carrying forward and what I’m leaving behind. I spent this morning reducing my Facebook ‘friends’ list down to those people that I actually spend real time with and those that I would spend real time with if they lived closer. Gone are the friends of friends, the occasional acquaintances and the people I never really knew at all. ‘Unliked’ are all those pages that push stuff into my timeline and eat up the first couple of hours of my day. This is all part of a desire to spend less time online and more time leading my new, improved and very valued life.

Cancer has made one thing very clear. My time on earth is limited. The most important question I can ask myself is ‘How do you want to spend that time?’ For me, this year will involve more yoga, more painting, more cello, more gardening and, most importantly, more face to face time with the people that I love. I’ll be spending less time ‘liking’ or ‘commenting’ on the posts of people that probably wouldn’t invite me to a party if they threw one. Facebook is a wonderful tool for communicating with lots of people but it has become a time vampire. I suspect I may have become just a little bit addicted to it. Time to get back to life. Nothing takes you away from mindfulness as quickly as Facebook.

I wish I had never had cancer but I am very grateful for the person I’ve become because of it. Thank you to all of you that have shared the roller coaster with me. Thank you for your time, your comments, your kindness and your advice. My plan is to live until I’m 86 and to never ever have cancer ever ever ever again. Wish me luck.

 

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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.

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.

Before and After a Bilateral Mastectomy

It’s been four days since my bilateral mastectomy.

It’s only been about three weeks since I found out I needed one.

Here’s some before and after reflections.

When my surgeon first gave me the news I shed only a couple of tears. Too many questions. She was straight into talking about reconstruction. I parked my emotions and listened. I tried to run through all of the questions I needed to ask. I failed. You can read my previous blog about the weeks that followed.

When I saw my surgeon two days before the surgery I left feeling calmer and at peace with my decision. When Graham asked how big the surgery was going to be, Kylie replied that it would be useful to imagine that I was having two lesions this size removed from my body. It’s not a small operation. I found the analogy very useful. I shifted from thinking of my breasts as breasts to thinking of them as potentially cancerous lesions that were putting my life at risk.

I think the two weeks of just letting my emotions ebb and flow, without judging them or trying to change them, helped me to arrive at a point where I felt good about surgery. I was also reassured to hear that there would be full pathological examination of all the removed tissue, along with another sentinel node biopsy to determine if I had any more active cancer, or pre-cancerous changes.

I have been practicing a technique called ‘expansion’, where I just make room for whatever emotions surface rather than struggling with them. I’ve also recognised that my thoughts are just stories I tell myself. They may or may not be true and their truth really doesn’t matter. What matters is whether or not my thoughts are helpful; whether they help me to live a life consistent with my values.

I am very grateful to Kerry Wagland, the psychologist attached to the Radiation Oncology Clinic at Gosford, for introducing me to these concepts. I’m also grateful for her recommendation that I read ‘The Happiness Trap’ by Russ Harris. I’ve spent a good portion of my life reading ‘self help’ books, practicing Cognitive Behavioural Therapy and overcoming the Post Traumatic Stress Disorder caused by working as a police officer (particularly in child protection). In all that time I haven’t found anything as useful or as simple as Acceptance Commitment Therapy. Life changing. I highly recommend it. Even if you don’t think you need it.

I always leave packing to the night before surgery. It keeps me occupied. I have a running list that sits on the table for the week before so I can make notes. There’s always those things we think of later but my beautiful husband has taken care of those. To assist anyone else facing a long stint in hospital, here’s my list of things I’m really happy to have with me:

1. Track suits with front opening tops and comfy clothes

You need front opening things following a mastectomy, obviously, and I find track suits more comfortable than your average pair of pyjamas. They also tend to be cheaper. I usually sleep naked so I wasn’t keen on buying lots of pyjamas, particularly as I wouldn’t have any further use for them once I was home. Trackies are great for sitting around in during the day and if the hospital staff are okay with it you can go for a walk outside. I’ve got one pair of front opening pyjamas that I put on at night.

I’ve also packed a soft hat and a pashmina style scarf. The hat is great for the inevitable bad hair days that follow surgery and the scarf keeps my neck warm and doubles as a bed shawl. It’s surprising how cold hospitals can get, particularly at 2.00am. I’m also glad to have a large supply of soft, very stretchy singlets, more knickers than I thought I’d need and a front opening cardigan.

I did think about having my hair cut short again because I knew it might be a while before I could wash it. I couldn’t bring myself to part with my ‘chemo curls’ and the little white tips that came with them. After being bald for so long I’m enjoying having a little bit of length to my hair. If you’re coming in for surgery you might feel differently. It’s certainly looked a mess. There are no hair dryers in hospital and I couldn’t use one anyway. Short hair would have been a lot easier. Still.

2. Comfy slip on shoes

Same principle as the trackies. You can head outside for a break from the ward. Something that slips on but is still secure on your foot (like a boat shoe) is best. My balance is a bit off, partly due to the absence of my breasts and partly because of the medication. I would actually be okay with tying shoe laces but you can’t be sure until after surgery, so slip-ons are best. Anything floppy (like thongs) is discouraged.

3. Thongs

No good for walking around but essential for the shower. Avoid catching (or spreading) tinea. Avoid picking up any other nasties through broken skin in your feet. In the lead up to surgery I paid particular attention to foot care to make sure I had no cracked skin and that I didn’t cut myself when I trimmed my toes.

4. Mouth care essentials

Recently I read an article describing how babies get their gut flora from their mother’s mouth while they are in the womb and not from the birth canal, as previously thought. Our mouths are very important to our gut health, even if we aren’t pregnant. I’ve packed Grant’s aloe vera toothpaste, dental floss toothpicks and some biotene mouth spray. I don’t usually use mouth spray or mouth wash. The alcohol based ones have been shown to promote bad breath and I can only imagine the damage they do to friendly bacteria. Biotene is, however, alcohol free and very useful following surgery when your mouth and throat can feel dry and irritated. I’ve also got a little tube of Kenalog for mouth ulcers, just in case. I’ve also got lip balm. As  hygiene precaution I’ll throw out the toothbrush and the lip balm before I leave for home.

5. Skin and body care essentials

For me, these are usually all natural products. I’ve got Trilogy Rose Hip Oil for my face (and sometimes my hair if it gets really dry), hemp oil perfumed with essential oils for my body and some left over moisturiser in a pump pack. Hospitals are usually air conditioned and air conditioning is drying. I’ve bought my own soap. They have something called ‘Microsheild’ in the shower but the main ingredient appears to be sodium laureth sulphate. No thanks. I’ve bought a bar of natural soap from the local organic shop instead.

I forgot to pack tiger balm. My husband is bringing some in for me. I’ve had aching shoulders since surgery. I was able to have the hospital physiotherapist treat me which has helped. A hot pack would have been nice too, but this ward doesn’t allow them for safety reasons. They do have great single use heat packs that stick on your skin. If you’ve got cramping then let the nurses know and ask for some relief. Rubbing tiger balm in is also a great way for family to help. So are hand and foot massages.

I also packed nail clippers and a nail file. I don’t usually wear nail polish and it has no place in a hospital. Horrible smelly stuff and bits of it can flake off and end up where it shouldn’t be. Avoid.

6. Natural antiseptics; Eucalyptus spray and tea tree oil

I’m a long term fan of tea tree oil. It’s wonderful on small cuts and scrapes and you can also use it to wipe down surfaces or splash into smelly hospital drains. Hospitals are notorious for golden staph infections and it’s believed that high grade disinfectants have helped this highly resistant bacterium to develop anti-biotic resistant strains. When you’ve had major surgery you’re particularly susceptible and it’s the main reason for the ubiquitous hand sanitizer all over hospital wards. About two or three out of every ten people carry golden staph in their noses or on their skin so impeccable hygiene is important. A staph infection in a wound will seriously complicate healing and can kill you.

I routinely use tea tree oil under my arms and on any minor skin irritations while I’m in hospital. I also clean around (but not on) my wound site with it. Yes, it does sting briefly but not badly. If you quickly follow it with rose hip oil it stings less.

Everyone that walks into my room says ‘What’s that lovely smell?’. I use eucalyptus oil at home but the Bosistos Eucalyptus Spray is more practical in a hospital. They also make one with lavender oil if that’s your preference. It smells divine and I find it very calming. It’s a natural bronchodilator so it helps me to return to deep, healthy breathing after an anaesthetic, when lungs can become congested.  It’s a natural antiseptic that will also help combat golden staph and it helps to hide any unpleasant smells. Which brings me to the next essential item.

7. Fibre and dietary supplements

Surgery notoriously messes with your bowels. There’s a reason nurses keep asking about whether or not you’ve had them open following surgery. It’s possible to get badly backed up and if you can’t get things back to normal after a few days they’ll resort to laxatives and then enemas. You’re also likely to be impressively windy. I use either Fibresure or Benefibre which both dissolve in water (or coffee). I’ve also got a supply of fresh apples, mandarins and apple sauce.

Depending on where you’re hospitalised you might also be lucky enough to have access to salad and fruit as part of the dietary options. Avoid the sugar, the white bread, the cakes and biscuits and go easy on the protein (but have some of it, particularly the red meat). If there’s a cafe then ask someone to bring you a real coffee in the morning, or walk out and get one. It’s a legendary laxative, particularly with a good dose of fibre in it. Drink more water than you would usually drink.

I’m taking a vitamin D tablet each day. There’s not a lot of sun on a hospital ward and when you’re in for an extended stay that’s an issue. Vitamin D deficiency is now very common, particularly among women and it can undermine healing and vitality. I’ve checked with my doctor that this supplement is okay. I’m shocked when people who would be very careful with prescription or over the counter medications seem to be blasé about supplements. Some, like fish oil and vitamin K, can cause complications including excessive bleeding and bruising. Please talk to your doctor well in advance of surgery about everything you’re swallowing so you can cut it out in plenty of time. Even green tea can be problematic.

8. Technology

I’ve got my computer with me (obviously) and my own dongle. This hospital has free internet for patients but it’s slow and unreliable. I need to be connected! One of the first things I did following surgery was to post a selfie to Facebook. It’s a huge relief to friends and family if they can see you smiling and doing well. I’ve also packed my camera and I’ve taken photos of my wounds, my drains and my hospital room. My husband took a great ‘glamour shot’ of me in my binder. I don’t know if I’ll ever look at the surgery wound photos again but other women have told me they’re sorry they didn’t take them. Better to have them and not need them. I’ve also packed my iPod with my favourite relaxation music and guided meditations. This is brilliant in hospital where the unfamiliar noises can make it hard to sleep. I’ve attached the sporting style of headphones so they don’t fall out when I lay down. I’ve also got my phone with me.

10. Fluffy blanket and maybe a pillow

I bought myself a really soft, fluffy blanket right back at the beginning, when I figured I’d be spending a considerable amount of time on the couch. It’s plain blue on one side and has dolphins on the other. It reminds me that one of the most beautiful mammals on the planet has a completely smooth chest. It’s also warmer and more comforting than the cotton hospital blankets. I’ve been happy with the hospital pillows but a lot of people bring one from home.

11. Things to pass the time

For me that’s my computer, a few good books and some drawing equipment. Some people have craft they’re working on. Whatever you usually enjoy doing when you’re sitting down, provided it doesn’t involve too much arm movement, will be great while you’re recovering.

That’s my main list. You might also want to pack ear plugs, particularly if you’re going to have to share a room, but try them out at home first. I find that being able to hear my own pulse is not relaxing which is why I’ve opted for the iPod.

Give some thought to what will make you feel comfortable and comforted. You might like to have a family photo or two, some favourite perfume, a favourite snack food or something special to wash your hair. I’ve stored some Babushka Kefir Drinking Yoghurt in the fridge because they’ve had me on intravenous antibiotics and I’m looking after my gut health. I’ve also got a bag of water cress from our garden. They have plenty of salad options here but there’s something special about food from home.

I’m likely to be here about a week because sending me home with drains is problematic. I live over an hour from this hospital and the local base hospital at Gosford is a regional facility dealing with a city population. They have one part time breast care nurse covering a population of over 320,000 people and about 25 new breast cancer cases each week. I wonder how she copes.

Two of the four drains attached to my body have been removed. The other two will stay attached until there’s less than 30mls in them over a 24 hour period. They’re not as disturbing as I thought they would be. There are volunteers that make beautiful bags for them so I don’t need to look at them all day. I’m also very touched by the generosity of people that don’t know me and will never meet me. Same goes for the pillows from Zonta (a service club for professional women) that are designed to be tucked under my arms every night. Some people are so kind.

The staff at the Mater are exceptional. This place is a great example of what happens when you start with clear values and build everything from there. There is love in the walls. By a delightful coincidence I’ve had a series of naturally small breasted nurses. They are beautiful women. They would not be more beautiful with large breasts.

I have some discomfort but it’s well managed with pain relief. There’s a tightness around my chest which they tell me is nerve pain. As an added bonus, the gabapentin they’re giving me seems to have wiped out the peripheral neuropathy I’ve had since chemotherapy. No more pins and needles and aching hands. I can taste food again. This is not a small thing. The drain on my right side is annoying, and the one on the left doesn’t bother me at all. I’ve had some shoulder pain which I suspect is partly due to being in an odd position in surgery and partly due to my body adjusting to the absence of my breasts. Around about day three when the general anaesthetic ‘high’ wore off my pain peaked but on a scale of one to ten it hasn’t been above four.

I’m feeling great. Not a forced cheerfulness to impress the staff or an artificial happiness designed to push down negative feelings. I am honestly feeling great. I’ve looked at my chest and been pleasantly surprised. My husband has looked at it, declared me ‘svelte’ and told me I’ll look beautiful when it heals. I haven’t had ‘three day blues’ and I don’t think I’m going to have a bout of feeling sad, but if I do I will just allow that to happen.

Have you ever noticed that when someone is laughing, nobody ever tries to stop them, to calm them down or to tell them how they should be feeling. It should be that way with sadness I think. Life is always going to involve a full palette of emotions and a rich life will paint with all of those colours.

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