Fishing for Sympathy

I was in a shop last week, talking to a woman I had never met before, buying some sheets. I can’t even think of a reason why I said what I said. I’m pretty sure the whole conversation started with her asking, “Can I help you?”  There was a bit of the usual chat you have in a sheet shop. Nothing earth shattering. Then I heard these words come out of my mouth, “As you can probably tell, I’ve had a double mastectomy.”

The shop assistant looked surprised. “Oh really,” she said, and proceeded to tell me about a friend with breast cancer.

It’s not the first time I’ve done this. It’s probably about the third. It’s left me wondering why I do it at all. Why tell people that have no reason to know (and probably no interest) that I had breast cancer? It’s not like that makes me particularly unusual or special. As my daughter observed recently, it seems everyone has either had breast cancer or knows someone whose had breast cancer.

I suspect that, in my case at least, it’s about letting go of feeling so special. I read a comment by someone else with breast cancer about a year ago. “You will never feel more loved.” That phrase was like the sun coming up. Yes, I was sick and weak and frightened but I was also surrounded by people that made me their top priority. I could lay on the couch all day (and many days this was a necessity rather than a choice) and nobody would question my motives. Instead of doing all of my usual chores I could ask other people to do them for me.

During that period of time when I obviously had cancer and my entire body was hairless, I noticed how much nicer people were to me. People I had never met took particular care to smile, to be kinder, to go just a little bit out of their way for me. It’s interesting that I probably felt worse during radiation than I did during chemo, but by then I had short hair.

I never want to have cancer again. Never. But the big surprise about having it is how special I’ve felt since June 2012 when I was diagnosed.

Cancer has also been what I think of as a whole of life detox. I’ve shed all sorts of things, emotional and physical. I have lost friends that couldn’t cope or chose not to get involved. I have gained friends that I met along the way. I have changed my diet, increased my exercise, lost 12 kilos so far and massively reduced my alcohol consumption to an occasional glass of organic wine or two on weekends when we socialise. I used to have three or four glasses (about half a bottle) just about every night.

When you sit quietly holding hands with death the reality of your own, tiny, temporary life finally sinks in. It brings about a comprehensive shift in the way you think about just about everything. Priorities. They’re different now. I care less about things and more about relationships. I realise that, for me, connection, compassion, love and helping others are what really matter. I don’t feel guilty about spending time doing things I enjoy. I used to. I always had a long list of things I SHOULD be doing and I gave that priority over things I wanted to do. Not any more.

I am much less angry than I used to be, and much less inclined to escalate to anger. I am calmer and happier and kinder. I am mindful that anyone could be in the middle of what my family has just been through. You can’t tell by looking.

We are all temporary.

I still like my home clean and tidy, things repaired, gardens weeded and lawns mown. I just make sure that the things I love to do come first rather than second. Curiously the chores still get done. I get around to them after I’ve done the important stuff. Why did it take me so long to learn this?

My husband has finally been able to exhale. He’s been so worried for me. I insisted that he keep up his volunteering with the fire brigade and his involvement with two bands while I was sick. His employer let him shift to part time work during my treatment so he could drive me to chemotherapy. He’s back to full time work now. I miss the level of care and attention I got when I was sick. People really do realise how much they love you (or sadly for some, how much they don’t) when you get seriously ill. I don’t ever want to put him through that again, but I do miss that level of attention.

I don’t miss the distress that all of this has caused my beautiful daughter. Not at all. Not one bit. I can’t think of anything positive that it’s done for our relationship. We were already close. I am very glad to be able to show her how healthy I can be.

So maybe this is why I seem to randomly blurt out my medical history. I suspect I’m fishing for sympathy. I want strangers to be impressed with how well I look. I want them to contemplate what I’ve been through and give me credit for it all. Why? People get sick all the time. There’s nothing special about me.

And I think that’s the heart of it right there. Being special.

Cancer is horrible. Treatment is a blunt object with life threatening consequences and long term side effects. Bits of you get chopped off and thrown away. Or banked or…..I actually have no idea where my breasts are! Anyway…..cancer is horrible, but while you’re being treated for it you do feel pretty special. Well I did. Maybe this is just me.

I think that part of recovering from cancer is letting go of ‘cancer patient’ as an identity. It’s about getting back to being ‘Meg’. You really can’t tell that I’ve had a double mastectomy. I could just be flat chested. My hair is now past my shoulders and my eyebrows and eyelashes have regrown. If you met me tomorrow you’d never know.

I’m 53 years old. I’ve done a lot of things in my life so far, including 20 years worth of stories from my policing career, my commitment to being a really good parent, a short list of things I’ve learned to be good at simply for the pleasure of it, and all of the assorted bits and pieces that make up a life. Why should this disease be the most important thing about me? Why should I feel compelled to share this particular piece of medical history with anyone. I am so much more than just ‘a cancer survivor’.

I had dinner out with a friend last weekend. There was a woman at another table with a tell-tale cotton cap on her head and drawn in eyebrows. I thought to myself, “It’s her turn now.”

I need to return to being ‘normal’ (just as soon as I figure out what that is) or at the very least to stop making everything about cancer. I need to let go of it being who I am and relegate it to something that I once experienced. I don’t want to lose everything I’ve discovered and all of the changes I’ve made and I plan to keep writing about all of that. I do want to move on from a place where cancer is a big part of my day to day life. It deserves to be a footnote.

I am well.

I’m still going to be involved in relevant charities, but I was before I had cancer so that’s nothing new. I’m also going to keep sharing what I know and what I learn with other people going through something similar. The feedback I’ve had from this blog has been inspirational. It’s helped people. I hope to keep doing that.

So now it’s your turn. If you’re reading this and you’re going through treatment, or you recently finished treatment, and you’d like to ask me a question then please ask it here and I’ll do what I can to answer it. If you ask me something that I don’t know the answer to I’ll try to find out, or find out who you can ask. If I don’t know something I’ll be honest about that too.

I understand what you’re going through because I was once there too. I’ve benefited from the care and love of so many people. Now it’s your turn. How can I help you?

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Cancer and Yoga

I’ve wanted to write a post about yoga for a long time. I keep running it around in my head, trying to find something compelling to say about it. The trouble is that I can remember what my attitude used to be to people that tried to convince me to try yoga. They often seemed evangelical. I wondered how anyone could get that excited about an exercise class.

Now I laugh at my own ignorance. Yoga is so much more than an exercise class but I don’t expect you to take my word for it.

I suppose the best thing to do is to just tell my story.

I really do hope that, after reading this, you go and try out a few yoga classes and that you go for long enough to get over the perfectly natural embarrassment you feel when trying something new. I honestly believe it will be worth it. And if you don’t, that’s okay too.

I started yoga about five years ago, before I’d been diagnosed with cancer. My friend, Trish, says that everyone in a yoga class has a back story, many of them involving chronic illness or mental health issues, but my reasons for starting were much simpler; I couldn’t stand on one leg.

I’d joined the gym and one of the staff was studying to be a personal trainer. She asked if I’d like a free fitness assessment. When she tried to check my balance I was shocked to discover that I couldn’t keep one foot off the ground for longer than a few seconds. She told me that loss of balance is common as we age and one of the reasons elderly people have so many falls. I was in my late 40’s and hardly geriatric. She recommended yoga.

I’d been diagnosed with fibromyalgia many years before. It’s a chronic pain condition that feels a lot like that ache you get when the flu is about to hit you, or, ironically, like the ache you get if you overdo it at the gym. When I explained this to Emma, the resident yoga teacher, she told me to find my ‘intelligent edge’, not to hurt myself, to practice non-violence towards myself. I spent about half the class in a position called ‘pose of a child’.

But I kept going.

Thoughts of broken hips and walking frames motivated me. For the first month or so I felt like this:

funny-cartoon-fist-time-yoga

I love this cartoon. I think it sums up beautifully the reasons why a lot of people give up on yoga. It can be intimidating to be in a room full of people that seem to be able to bend themselves like pretzels. Then there’s the weird Indian names for positions and the weird Indian music. Although I did very quickly come to find the music surprisingly relaxing. My friend, Dayasaga Saraswati (yes, she teaches yoga) tells me that the Indian view of music is spiritual and that they believe it can resonate with us at a subconscious level to promote good health. I’ve come to believe they are definitely onto something.

After about two months I finally made it through a class without having to rest or stop and look at the teacher every fifteen seconds. I felt a small sense of triumph and then remembered that a yoga class is no place for ego. Emma often says ‘Honour the body that you’re in today. It’s a different body to yesterday. You’ll have a different body tomorrow.”

After about three months I found myself really looking forward to Thursday morning yoga classes. I had my own favourite spot on the floor. I was on smiling and nodding terms with a lot of the other regulars. Best of all, I could now stand on one leg. I could also stand on one leg, hold the foot of the other leg with my hand, make a mudra with my other hand and bow forwards in a dancer pose. My body felt energised after classes. Without thinking about it, I naturally started to eat better and to appreciate my body. I could now bend and balance in ways that I didn’t think would ever be possible.

I also noticed that I’d stopped worrying about how I looked or what anyone else in the room was doing. My mat had become a kind of magic carpet. When I stepped onto it I was fully present. When my mind started to drift I would gently pull it back onto the mat. I felt as if I had moved back into my own body. I started noticing that this state of mindfulness stayed with me after class. I would find myself fascinated by mundane tasks and deeply appreciative of special moments. I spent a lot more time in the present and a lot less reflecting on the past or planning for the future. Yoga had done this:

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One day in class, Emma made a comment about incorporating something into home practice. Home practice? You mean one class a week wasn’t all the yoga I needed? Emma and Dayasagar both told me that even five or ten minutes of yoga a day could be life changing. At the time I thought it was highly unlikely that such a small investment of time could have such impressive returns, but I figured it would probably help me to manage my fibromyalgia pain and to stay fit and flexible.

Starting home practice was just like starting class. I was back to feeling awkward and self conscious all over again. I’d do half a dozen cat stretches and then wonder what to do next. I decided to build my home practice a bit like the way we used to learn dances at school. Start at the beginning and just keep adding bits on. I eventually settled into a steady practice that included plenty of different poses. I tended to stick with this basic pattern, occasionally adding in something from that week’s class.

Over time my morning yoga became as essential to my day as my morning shower. I figured out how to pack an old yoga mat into luggage when I travelled. Friends booked a weekend away and kindly made sure there would be somewhere for me to practice.

I realised that yoga had become an essential part of my life. I was feeling fitter, stronger and happier than I could ever remember feeling. My fibromyalgia didn’t vanish, but I was in less pain less often and I could modify class according to how I was feeling. On one occasion when I’d had a serious relapse I turned up at class and burst into tears. “I’m right back where I started!” I told Emma. “It’s okay,” she told me. “You’ve been here before and overcome it. Just honour the body you have today.” To our mutual surprise I managed a whole class. Yoga had conquered fibromyalgia.

Then I was diagnosed with cancer.

My first class after diagnosis was difficult. I knew I’d cry when I saw Emma. I knew I’d be in that uncomfortable position where some people in the room knew something incredibly personal about me while most had no idea. I wondered if I’d be better off giving up class. By the end of that class I knew I had to keep coming. I still had cancer but the fear and horror of my diagnosis had settled. I felt calm. Ready. This is the body I have today and it has cancer. But I’m still here. I also knew that I had to practice non violence towards my own body. I would not bully myself or beat myself up over my cancer diagnosis. I accepted the reality. I resolved to breathe into my diagnosis, to make room for it and to accept it.

When my hair fell out the whole room could see what was going on. People that had smiled and nodded all those years started to talk to me, to ask how I was going, to tell me they thought I was brave or inspirational. As chemotherapy progressed I considered giving up class, concerned that I might pick up a cold. Most people don’t know that a head cold can kill you when you’re going through chemotherapy. Instead I chose to bring a can of disinfectant spray and to use that to create my own little decontamination zone. Friends knew not to kiss or hug me. Class went on. I went back to spending half of it in pose of a child because of the fatigue but I always came away calmer, stronger and feeling at peace. Yoga was a weekly reminder that my chemo ravaged body wasn’t permanent. I would come through this.

Home practice was one of the most beneficial things for dealing with chemotherapy. I would roll out my mat and start with cat stretches. I would immediately feel my energy start to rise and my distress start to dissipate. Some days I would feel to sick or tired and my husband would remind me, “The days you least feel like yoga are the days you most need yoga.” So true.

In the middle of chemotherapy I developed a fever and nearly wound up in hospital with neutropenia. I dodged that bullet but had to miss two weeks of classes. Emma kept in touch via Facebook. Home practice became more important than ever.

Following my first surgery the Breastcare Nurses commented on my extraordinary range of arm movement. I’d had a slice taken out of my breast and a string of lymph nodes removed and I could put my hands into reverse prayer position behind my back. When they showed me the physiotherapy exercises and advised that I work up to them slowly I demonstrated my ability to do all of them and asked when I could get back to class. Three weeks later with the wound carefully taped I was back doing a modified version with Emma’s support and advice. Five weeks later I was back doing a full class. That’s what yoga can do for you.

When the radiation clinic asked me what time would suit me for my six weeks of daily zaps I made sure they didn’t clash with yoga class. My husband was so impressed with what yoga had done for me that he started going to a Monday night class and I went with him as often as possible. After radiation I missed two weeks while my skin became raw but as soon as possible I was back on my mat.

When I got the news in July this year that the cancer had come back and I would need a mastectomy it was yoga that helped me more than anything else. Practice non-violence with my own body and accept what is. This is not the body I will have a month from now because that body won’t have breasts. But it will still be my body.

When I was offered reconstruction one of the critical factors for me was my return to yoga. With reconstruction, my surgeon thought I would probably need to stop all yoga for at least three months and as long as six months, depending on how well I healed. Without reconstruction I could probably be back at class in about six weeks. This is the point at which I really understood how essential my yoga practice had become to me. The thought of not being able to do yoga for six months was distressing.

I realised that yoga, for me, had become so much more than standing on one leg. I had become calmer, kinder, less judgemental. I had noticed improvements in my balance, flexibility and posture, which you would expect but there were also subtle and unexpected consequences. I realised that part of the legacy of my policing career was a tendency to hold my breath, or to breathe in a very shallow way. If you’re doing a warehouse search for an armed offender this is a good skill to have but to do it on a regular basis starves your body of oxygen. There’s a reason yoga instructors include advice about inhaling and exhaling. My sleep improved. My mood improved. I was healthier and happier, even while I had cancer.

Following the double mastectomy in August this year I was still able to put my hands into reverse prayer to the amazement of the nursing staff. One of the old, wise nurses said, “We get two kinds of mastectomy patients. Those that do yoga and those that don’t.” While other patients lay in their beds and watched television I started walking laps of the ward. Forbidden yoga for a couple of weeks I still felt the need for some kind of exercise.

I returned to a modified daily practice as soon as I was released from hospital, nine days after surgery. My doctor cleared me for class after three weeks. I’ve been back ever since.

I am certain that yoga, and Emma’s class in particular, has made an enormous contribution to my acceptance of life without breasts. This is my body and I love it. I am strong, flexible and grounded. Thanks to yoga I also have pretty good legs for a woman in her 50s! I haven’t felt the need for prosthetics and part of that is the complete acceptance of my new body.

One of my yoga friends, Jan, is naturally flat chested. Before my surgery she told me we’d be flat mates. What a wonderful thing to say. Funny that I’d never even noticed she was flat chested until she pointed it out, and that was a reassuring thought too.

There are no words to fully describe what yoga has done for me. Some of it is beyond language. It is deeper. It’s like trying to describe great music, or love, or the colour blue. Sometimes you just have to experience something for yourself. When it comes to explaining yoga, words are like a documentary about Australia. The documentary can show you images of the country but that’s nothing like travelling here, meeting the people and seeing the land. Yoga is the same. If you do it, and keep doing it for long enough, then you understand.

Yesterday I managed a yoga move I’d never done before. It’s difficult. It’s a side plank, which requires me to support my body weight with one arm, followed by a move where I put the top leg behind me and arch my back. I was momentarily pleased with myself and then I remembered that yoga class is no place for my ego. That was yesterday’s body. Cancer has taught me that anything could happen. My body might be very different next week. Even so, I can now say that for the moment, I am officially fitter than I was before the mastectomy. I am also able to support my body weight on either arm. Please think about that for a minute.

I keep trying to thank Emma. She pushes back. “It’s not me. It’s the yoga.” Yes, it is the yoga and it’s also having a teacher that creates a safe space, where I can be weak and ill and full of pain and still welcome. It’s about weaving the philosophy of yoga into each class so that it gently shifts my own thinking. It’s about being a living example of everything she teaches, including humility, which I suppose is why she doesn’t accept any credit.

So this post is for you, Emma. It’s my way of attempting to express the profound impact your classes have had on my life. Thank you. My cancer treatment would have been so much harder without yoga. My life would be so much poorer without yoga and all it has given me. Namaste. You have my deep gratitude and sincere love.

And for everyone else, please consider trying yoga. Not just one class, which I promise will leave you feeling awkward and embarrassed, but try it for a few months. You might just find that it opens up a treasure chest of benefits and even if it doesn’t, at least you’ll be able to stand on one leg.

 

 

 

 

A Matter of Trust

I’ve been thinking a lot about trust lately. It keeps turning up in conversations. Just a few days ago a friend and I sat on the front verandah and talked about infidelity, and how the real issue is the betrayal of trust.

At the time of my retirement I was the Commander of the NSW Police Fraud Squad. When I took the job on, fraud wasn’t considered a particularly serious crime because the impact on victims compared to crimes of violence was considered negligible. Over time I observed that, in fact, the impact was more severe than many people realised.

When you’re a victim of fraud you’ve been tricked into parting with your money. Really effective fraud offenders will build a relationship with you in order to get access to your money. What I found interesting talking to victims was that the monetary loss was not the worst part of this crime. It was the loss of trust.

When you’ve been betrayed you question your own judgement. You beat yourself up for trusting someone. You retrospectively see all of the signs that something was wrong or you observe that there were no warning signs at all and this makes your mistrust a slow moving cancer that infects all of your relationships.

A friend asked me a couple of months ago for my opinion on her husband. Did I think he was having an affair. How can you ever answer this question? Apart from saying ‘Not with me!’ I had no immediate answer for her. What if I defended him and she later discovered he was having an affair? What if I shared her concerns and unfairly condemned him? I’d been in a similar position myself, a long time ago, when I suspected that a person I was in a relationship with was secretly drinking, even though he’d promised not to. Ultimately I discovered that the depth of his deception went way beyond just breaking that promise. I ended the relationship because I came to understand that if I didn’t trust him I couldn’t possibly say that I loved him. I believe that trust is an essential part of love. I also recognised that real love is unconditional. If you don’t love someone exactly the way they are, if you have a list of changes you want them to make, and if your love is conditional upon those changes then you do not really love that person. You love some mythical version of them that you’ve created in your head.

Lately it’s occurred to me that one of the biggest hurdles for me right now is trust. I’m not worried about my husband. He’s the man that managed to win my trust in spite of the disastrous betrayal of that past relationship. He’s one of the most honest people I know. My trust issues are with my own body.

At the time of my initial diagnosis I would have told you that I was healthier than I’d ever been. I was completely convinced of the physical and emotional benefits of yoga and had started practicing at home every morning. I was eating a largely organic, whole food diet. I was, for the most part, a moderate drinker with occasional over-indulgence at social events, but I hadn’t had a hang over in more than a decade. (This was before I knew that alcohol was a group one carcinogen and as bad for me as cigarettes!) I didn’t take any illegal drugs and was conscious of the need to lose about ten kilos while being frustrated that anything I’d tried so far to actually lose that weight didn’t seem to work. Compared to my friends, I was at least as healthy as most of them and healthier than some of them.

Mentally and emotionally I was in the best place I had ever been. My relationship with my husband was strong and supportive. Like all couples we were not without room for improvement but it was more of a slow refining over time. My daughter had made it through her teenage years with a surprising absence of drama, drugs, alcohol or racing around in cars. We had started to work on our relationship as mutually respectful adults. I loved my home and my life. Things were good.

I got cancer anyway.

It’s part of the reason I get so annoyed at alternative treatment posts that want me to search inside myself for the emotional causes of my cancer. Try as I might I’m unable to locate any ‘repressed anger’ or ’emotional retardation’. I was practicing mindfulness and meditation. I was at peace with my self and in love with my life. I was doing all of the things you would normally recommend to someone seeking to improve their physical, emotional or mental health.

I got cancer anyway.

If you’ve been following this blog since the beginning, you’ll know that I met my diagnosis head on. I embraced the power of positive thinking and creative visualisation. I fine tuned my diet and increased my meditation. My daily yoga became as important to me as my daily shower. The days I least felt like yoga were the days I most needed yoga. I cut my drinking right back to the very occasional glass of wine in a restaurant. I probably drank a total of three bottles of wine in twelve months. I added turmeric and lots more leafy greens and cannabis oil and garlic and turkey tail mushrooms and flax seed to my diet. I made sure that all of the meat I consumed was organic and grass fed.

The cancer came back anyway.

I don’t regret my commitment to positive thinking. It’s made treatment more bearable and it’s made me more pleasant to be around. It’s ensured that through all of the treatment there has still been joy and humour and affection and love. My life has not been ‘on hold’ while I fight cancer. Life is far too precious to put on hold. My life has had to incorporate chemotherapy and radiation and surgery and surgery and surgery. I’ve lived through the fatigue and the hair loss and the bloating and the sometimes overwhelming fear of my early death. I have stayed positive.

The cancer came back anyway.

I’ve tried to emphasise along the way that I don’t think staying positive means excluding all of my other very human emotions. It’s about finding joy where there is legitimate joy and being grateful for what is really there. It’s the sweetness of small moments. My husband’s hand on my bald head, my daughter’s sobbing embrace, my friend’s thoughtful words, the kindness of strangers, all of it wonderful.

I realise that my body and I now have serious trust issues. How could I have been so sick when I seemed so well? When I was initially diagnosed I was pretty healthy. When my recurrence was diagnosed there was general consensus that I’d never looked better. Even then I had lingering doubts about being in the eye of a storm.

Now that I’m out the other side of treatment I need to learn to trust again. My body is slowly recovering. In just the last few days I’ve felt my energy starting to return. I’ve cut right back on any medication. The side effects of the prescribed drugs for nerve pain were worse than the nerve pain. The other pain relievers only have limited impact on my other pain, which could be arthritis or fibromyalgia or bone pain from chemotherapy. I’ve started magnesium supplements and that seems to have helped. Mostly I’m relying upon massage, hot showers and yoga to stay mobile and flexible. Some times I take a couple of panadol but it really only takes the edge off the pain.

My husband jokes that cancer has finally taught me that I am not indestructible. This is true. It’s a good thing to come to terms with. I am kinder to my body and much better at resting when I need to. As a naturally busy person this has taken time.

I suspect that we all float through life with a sense of indestructibility until life serves up something life-threatening. Suddenly we come face to face with our own mortality. Life is finite. We will all die.

This realisation is both terrifying and wonderful. The unimportant slips away. Decisions about what is really important become simple. I know that for some people a cancer diagnosis triggers major life changes as they realise there are aspects of their current situation that don’t fit with who they want to be and what they want to achieve. If you’re lucky, a cancer diagnosis makes you take a long, slow look at your life and allows you to come away with a sense of satisfaction. I am lucky. I have spent large chunks of my life mindfully creating something that brings me joy, pride and deep satisfaction. I appreciate it more because of my new understanding of its fragility.

I miss feeling indestructible. I miss that unshakable trust I had in my own body. I felt as if I was going to live forever.

I wonder if it’s possible to rebuild that trust now that I know the truth.

It’s a bit like people that have been victims of fraud. For a while, they find it difficult to trust anyone. Ultimately, those that recover make a decision to trust in spite of the betrayal.

I think that’s what I need to do. I have to trust my body to do everything it can to prevent the cancer coming back. I have to recognise that my reluctance is normal, human and expected but that the only way back to having a rich and full and meaningful life is just decide to trust. I am eating and sleeping well. I am slowly regaining my strength and my wounds are healing. As my physical range of movement returns I need to recognise that my emotional range also needs to be stretched and expanded. Slowly, slowly.

Trust is always a leap of faith. You can’t monitor another person’s behaviour twenty-four hours a day. You just have to make the decision that they are trustworthy and risk being betrayed. I think that’s where I am now with my body. I need to recover from what feels like a betrayal and learn to trust my own health. Will this prevent the cancer from coming back? I honestly don’t think it will make any difference either way.

In the same way that a lack of trust will doom a relationship with another person, I think a lack of trust in my own body will undermine my recovery. I don’t want to spend the rest of my life waiting for cancer. I don’t want to be thinking that every headache or bone ache or stomach ache is evidence of metastatic disease. I know that fear of recurrence is now going to be a regular visitor but I don’t intend to let it take up residence.

I will trust my body for the same reason that I trust my husband. Because without trust there can be no love, and without love, life is not worth living. I will trust my body in spite of what has happened because even though I’ve had cancer, my body has fought back. I will trust my body again because the alternative is unacceptable. If this was a relationship, I could make a decision to leave it but this is the only body I have.

So I will learn to trust it.

 

 

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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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.