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.

P1070195 P1070196
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.

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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.

 

 

 

 

Some Wounds Go Deeper

I’ve been looking at the mastectomy wounds on my chest today, wishing they would heal. I’ve been thinking that I want to get back to my life, back to being healthy, back to normal.

But what is normal?

Things are never going to be the way they were before I was told I had cancer.

I was a cop for twenty years so I saw more than my fair share of death. Some of it was sudden. Some of it was violent. I thought I had a pretty good handle on the idea that our lives are finite and we are all going to die one day.

Until it was my life we were talking about. Suddenly my own mortality loomed up in front of me. I hit my head on it. I fell down in front of it.

When my Dad died of bladder cancer at 58 people commented on how young he was. I sometimes thought about celebrating my 58th birthday and raising a glass to my Dad, sad that he was no longer with us.

I’m fifty two.

Suddenly fifty eight feels like a long way away.

By a peculiar coincidence, if I make it to 58 my chances of living longer and remaining cancer free will be good. That’s the thing about triple negative breast cancer. It’s more likely to kill me in the next three years than other types of breast cancer but if I can make it to five years my odds improve dramatically.

Still.

I’m never going back to that blissfully ignorant state where I just assume I’m going to be watching my grandchildren finish high school. These are my as yet unborn grandchildren. I may never meet them.

The plans that my husband and I were making for our retirement have taken a whole new direction. It seems those property investment decisions were not nearly as important as we thought they were. Our focus is much closer to now. One of the great gifts of cancer is that the notion of mindfulness, of being in the present, sinks into your bones.

I notice details. The light on a drop of water suspended from a branch in the garden. The creases at the corners of my husband’s eyes. The smell of my daughter’s hair. I soak it all up. I breathe it all in.

I am greedy with my time. I find myself furious at the telemarketer that wants to sell me a life coaching course and irritated with the web site that takes too long to load. I have no patience for queues. Okay, I’ve actually never had any patience for queues but lately they infuriate me. Time is all we have. Time is all any of us have. Every day we make a thousand tiny decisions about how much of it goes here and how much of it goes there. How we spend out time says everything about who we are. Words mean nothing. Actions mean everything.

Do I really want to spend two hours arguing with my sister on Facebook?

Everyone is getting used to the way I look without breasts. I decided not to have reconstruction and to opt for what would heal the fastest. It’s been two weeks since my mastectomy and I’m already doing yoga. Next Monday I’ll be back at class. My chest is tight and uncomfortable, as my surgeon said it would be. I’ll be healed soon.

Well, sort of.

Some wounds can’t be seen on the outside. That loss of security, that blissful ignorance about my own mortality, that sense that life is just going to stretch on and on and on forever; that’s never coming back.

Which is not entirely a bad thing.

Cancer has taught me what I value (and what I don’t). I have a whole new appreciation for my beautiful husband, my wondrous daughter and all of my amazing friends. I really understand the importance of love, and kindness, and just taking time to enjoy life. Really.

Cancer has humbled me. I hold my opinions lightly, having had so many of my old ones shattered by cancer. I am less certain and less opinionated. This is a good thing. I have less time for the dull and wilfully ignorant and a greater appreciation of the compassionate and the charitable.

And my Mum. How can I even begin to explain how I feel about my mother’s bravery and strength and humour, not just because she’s been with me through all of this but because she’s already been beaten black and blue by cancer. She watched it kill my Dad. Slowly. I know she has days that she’s frightened for me, and fears me facing that slow death of gradual loss. And still she smiles and hugs me and brings me plants for the garden. She cries in front of other people. She smiles and laughs when she sees me. She understands better than anyone that cancer has changed me.

I am a better person.

I hope to live long enough to prove that to all of the people that have done so much for me, meant so much to me and brought such joy to me when everything seemed dark and bleak.

I hope to remember all of the hard lessons. I hope the grief and the pain will fade with the scars.

I hope.

I know what matters now. My goal is to live a life consistent with my values. To be authentic.

Or just to live.

That would be good.

 

 

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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Digging a Hole with my Brain

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

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

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

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

What if it comes back?

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

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

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

Right?

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

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

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

And so on….

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

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

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

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

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

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

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

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

And so on…..

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

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

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

I am alive.

 

 

Go To Your Room, Cancer!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Release the Paclitaxels!