One Year Post Mastectomy

Fanfare please!

It’s been one year since my bilateral mastectomy.

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

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

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

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

This is important.

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

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

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

I’ve been actively participating in my recovery.

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

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

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

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

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

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

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

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

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

So here’s my latest photos.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Don’t Say Don’t And Ban The Bullies

Sometimes there’s a confluence, an influx of information that all seems to resonate. I’ve had one of those weeks.

It started with this thought:

What if, the next time you went to see your doctor, they told you that no matter what you did you would never weigh less than you do today? What if your doctor said you had some rare metabolic condition, so it was possible for you to gain weight but not to lose it. Ever. You could become fitter and better toned through exercise. You could improve your health and the appearance of your skin, hair and eyes with diet, but you could never, ever lose weight.

What would change?

My thinking around this issue started with last week’s post about The Fast Diet. While I’ve had great success with it, I think the key to sticking with it started before I read the book. I decided to love my body exactly as it was. I decided to abandon negative self-talk and criticism and to focus on what I loved about my body. At the time I was dealing with an extra six kilos as a consequence of treatment. Contrary to popular belief, cancer treatment doesn’t make everyone thin! I was also carrying the same ten kilos that I gained during my pregnancy over twenty years ago.

I can remember what triggered my shift in attitude. I saw photographs of myself from a night out with my family. I thought, “Oh no! Look how fat I am!” I had gone out feeling great and thinking I looked stylish and when I looked at these images all I could see was a huge, middle aged fat lady in a sequinned top. I cried. Then my daughter said, “Oh Mum! Please stop being so hard on yourself. Your body is fighting cancer! That’s enough for now. You can worry about your weight later.”

My daughter is very wise. This isn’t the first time she’s shifted my thinking. I realised that I’d been indulging in the worst kind of bullying. I had been speaking to myself in a way that I would never, ever speak to someone else.

I stopped beating myself up. I started noticing what I liked about my body. What I liked most of all was how aggressively my body pushed back against the cancer. During chemotherapy my doctor was amazed by my blood work. During radiation my skin held up under the onslaught and my mind pushed back against the overwhelming sense that I was now a commodity to be farmed, like a sack of potatoes on a conveyor belt. (The barcode they gave me at the clinic didn’t help.)

I kept up my yoga all through treatment and noticed the difference in my energy levels when ever I would spend time on my mat. Slowly, slowly as I recovered from treatment I found a new strength and flexibility. My yoga teacher, Emma, reminds me to “be in the body you have today” and to recognise that the body I am in tomorrow will be a different body. This was a powerful message to me when I was dealing with the long term side effects of chemotherapy, radiation and surgical removal of both breasts.

This week, Emma and I had a coffee together and she remarked on how far I’d come. I was told I’d have permanently compromised range of movement in my arms. I don’t. I was told that the arthritis they picked up in my bone scans would mean a life-long requirement for daily pain relief. It doesn’t. Lately I’m noticing how well I’m feeling.

People sometimes comment on how well I coped with the mastectomy. I suppose I just accepted it. I grieved. And then I moved on. It is what it is. I don’t look in the mirror and wish I had breasts. I look in the mirror and think about how amazing it is that I’m still alive. I think about all that my body has been through and how amazing it is that, in spite of all that, the body wants to heal. We are all programmed for good health. I will never have breasts again by my body has done everything possible to work around this massive surgery.

This week I’ve been reading articles about climate change and how, if we want people to understand that crisis, we need to talk about the kind of future we could have in a positive way. Scare tactics just send people in the opposite direction. Nobody wants to bullied or terrified.

I’ve also read an article about the sub-conscious mind and an author’s theory that it can’t understand a negative statement. His theory, essentially, is that when you say “don’t eat chocolate!” your subconscious hears “Eat chocolate!”. His cure for insomnia is to stop saying “I can’t sleep” and to start saying “When I go to bed tonight I’m going to have a deep and restful sleep” because your subconscious will agree with either statement. So if you say “I can’t sleep” your subconscious says, “Okay.”

It’s an interesting theory. Perhaps it’s even simpler. Perhaps it’s just that we all respond the same way to negativity, bullying and catastrophising. We push back.

When I made the decision to love my body exactly the way it is, it naturally followed that I wanted to feed my body well. I wanted to make sure I ate healthy food, avoided alcohol and looked for ways to maximise my chances of living a long and healthy life. I didn’t start The Fast Diet to lose weight or because I was ashamed of the way I looked. I started it because I was convinced by the research that it would help me to prevent cancer.

I’ve always considered myself a work in progress. Over the years I’ve broken bad habits (even that language is interesting), I’ve improved my mind, I’ve become more tolerant and compassionate and I’ve come to feel more and more comfortable in my own skin. Looking back, I can see that change usually happened because an idea was compelling, a truth was apparent or because someone close to me kindly and gently invited me to change. My failures have all included attempts at bullying, either internally or externally.

Nobody likes to give a bully what they want, even when they are the bully.

So I’m heading off to a yoga retreat for some self-nurturing and some time with one of the wisest people I know. We’ll eat healthy food, stretch and breathe and delight in our bodies and return home refreshed and recharged.

It seems to me that being positive has a much deeper meaning than the way it is commonly understood. If we’re going to achieve any lasting change we need to frame it in a positive way. “I will eat nourishing food” is far more powerful than “I won’t eat sugar”. “I will devote some time each day to being physically fitter” is far more powerful than “I will lose weight.” It’s a lot more enjoyable to achieve something than to avoid it.

So back to my original proposition. What if your doctor told you that you could never lose weight? I think the answer for most of us is that we would accept the diagnosis and start focusing on what we COULD do. We’d eat well and enjoy our food without self-recrimination. We’d abandon self-bullying diets and adopt the kind of eating pattern that included a few treats while emphasising sound nutrition. We’d exercise for the pleasure of it, enjoying it for its own sake without jumping on the scales to see if we’d dropped weight.

This is just a thought exercise but a lot of us have already had some practice. My breasts aren’t growing back. I have chosen not to have reconstruction, but those that have chosen it tell me that they still need to accept that their bodies will not be the same. We know that if we’re going to overcome what cancer has done to us, then acceptance and loving the body we have right now is part of it.

So this is my invitation to love your amazing, wonderful body. Think about all of the extraordinary things your body achieves every single day. Listen to the way you talk to yourself and apply this simple test; if you said that out loud to someone else, how would they respond?

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?

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.

Fear of Recurrence: Part One

I’m feeling well.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

 

 

 

 

Two Months Post Mastectomy

WARNING: This post includes photos of my surgical scars. Please skip it if you don’t want to see them.

It’s two months today since I had my bilateral mastectomy. I thought I’d make a record of what’s going on physically and emotionally.

I’m healing well. The small scar from my previous (and now ironically named) breast conserving surgery has finally healed although it still looks a little fragile. The two mastectomy scars have healed well. The one on my right side was the healthy breast and that tissue wasn’t damaged by radiation therapy, so the scar is fine and flat. As you can see in the photo, large breasts mean long scars and mine head off under my arms. There’s still a bit of swelling under the scar but most of the fluid that built up (called a seroma) has been reabsorbed. I’m not sure if that bulge you can see under the scar will be permanent. It feels quite hard and might soften over time.

The left breast (also known as the evil breast) was subject to radiation and two prior surgeries and it’s not as neat. Please note these shots are ‘selflies’ using a mirror so things might seem back to front. I’m sure you can tell which breast is which from the photos. The left side has got quite a large lump under the arm, and some puckering just to the side of it. I’ve been assured that this is all ‘normal’ and that compared to a lot of post-radiation mastectomies, mine is one of the good ones. That makes me shudder. The smaller scar is from the breast conserving surgery that discovered the invasive cancer. It was unstable for a while but it seems to be healing well now. This side continues to have weird sensations, a bit like mild electric shocks along with the occasional sharp pain. This is also normal but I’m curious as to why I haven’t had any of these sensations on my right side.

Because of the radiation to this side the skin is weaker and will stay that way for over a decade. The pores look larger and the whole area is discoloured. You can see there’s a couple of odd red patches. Although it looks painful, it isn’t. Because of the nerve pain associated with this type of surgery the most uncomfortable spot is actually the middle of my back.

I’m massaging the scars and the bumpy bits regularly with plenty of rose hip oil or hemp oil. This will help to smooth things out and to minimise the scars.

It’s stating the obvious that none of this is pretty. I am very (VERY) fortunate to have had the love and support of my husband who continues to declare me beautiful, even when I’m naked, and who has no qualms at all about touching my scarred chest. I think that this has had more impact than anything else on my emotional recovery. I know some women don’t even want their partner to look at their scars, let alone touch them, but for me this has helped me to feel just as beautiful as I did when I had breasts. Beauty is not just in the eye of the beholder. It’s also a gift that one person can give to another. If he can look at me and see beauty then so can I. Simple.

The whole area has been numb to touch since surgery but now I’ve got some sensation returning. I’m told that I’ll eventually have good sensation again. Time heals. I continue to be very happy about my decision not to have reconstruction. Tissue transplant involves microsurgery to connect the blood supply but they can’t connect the nerves so although the ‘mounds’ they give you are warm and soft to the touch you can’t feel it. I like this better. I also like that my tummy is intact.

When I look at these photos I wince. They look so brutal. I don’t feel brutalised and most of the time I forget I’ve even had a mastectomy. I can still feel my breasts, and my nipples. I’m told some women find this disturbing. I see it as my body’s way of helping me cope with the loss. I suppose the phantom breasts will fade with time as I become more and more accustomed to life without them. I want to caption them; “Not as bad as they look!” I post them to help other women facing this type of surgery. I found similar photos from other generous women really helpful. I’ll post updated photos as I heal.

As the weather warms up I really am enjoying the freedom that comes from not having breasts any more. I do not miss bras. The sundress with shoe string straps that used to be confined to my home now gets worn out, although I do need to be careful bending forward in it. I’ve discovered that wearing my singlet tops backwards stops them from being too low in the front. Because I can see my tummy when I look down, I’m standing straighter and paying more attention to what I eat. I was 86 kilos during chemotherapy. Contrary to popular belief, not everyone gets thin and wasted. The steroids make you gain weight. I’m now down to 78 kilos and well on the way to 75, which I consider to be my best weight.

Although now that I think of it, I probably need to revise that down to 73 to allow for the two kilos I’ve had surgically removed.

After the drama with the gabapentin prescribed for the nerve pain in my chest, hands, feet and legs (it made me think that suicide was a really sensible option) my doctor prescribed Tegretol (Carbamazepine Sandoz). I took it for three days and it had no impact on the nerve pain but it did make me feel like I was stoned. I hated it. My nerve pain was at very low levels prior to my surgery so recovery without drugs is theoretically possible. I’ve decided to put up with it and see if it improves rather than take these horrible drugs. They all come with a long list of awful potential side effects.

The same is true for the NSAIDs prescribed for my lower back pain. It’s really only a problem at night and eases as soon as I do my yoga in the morning. I’m considering an electronic bed so I can sleep with my legs elevated but they’re expensive. I’ve tried using a pillow under my knees but it shifts around during the night and doesn’t seem to help. I’ve tried several different kinds of mattress topper without seeing much difference. Memory foam made things worse and it also has a smell that’s a cross between a swamp and a chemical factory. Something that was supposed to be latex felt harder than the floor. At the moment I’m using one of those ‘egg crate’ toppers made with foam and it’s not bad. I wonder if the Mater Hospital would let me come and stay a couple of nights on one of their beds so I can determine if it was that or the heavy pain medication that made such a difference during my admission. No. Probably not.

All of the NSAIDs I’ve been prescribed, including Naproxen and Feldene, come with warnings that they may cause bleeding into the stomach and that they should not be taken by anyone who has previously had a stomach ulcer. That would be me! What was my doctor thinking? I need to go back and have another conversation about pain relief. I also make the observation that it’s up to all of us to check and double check everything we’re prescribed. Doctors are human. They make mistakes. Sometimes they’re working too hard and sometimes, just like the rest of us, they have a lapse in concentration.

I am now certain that my surgeon made a mistake when she left the marker clip in my breast during my first surgery. It was interesting that one of the doctors at the imaging centre essentially tried to cover for her when I went back to have a marker wire inserted before the second surgery. For a while I thought it had been left in on purpose but the clues have been there. The last time I saw her she made a point of telling me that there was new research into triple negative breast cancer showing that having a mastectomy as the first form of treatment (rather than chemotherapy) led to worse survival rates. I knew this. I keep up to date with the research. I said this to her:

“Kylie, I want you to know that I am very happy with the treatment I’ve received. I know that having chemotherapy first was the best thing I could have done. I know that it would be easy with hindsight to say that we should have just gone with a mastectomy but it was worth trying to save my breast. We couldn’t have known the cancer would come back. And you’ve got to stop beating yourself up about the clip!”

She replied, “I do beat myself up.:

I said, “I look at it this way. If you hadn’t left the clip in then we probably would have been happy with a biopsy when the one year scans picked up something suspicious. Because the clip was there you decided to do another surgery and because of that we picked up invasive cancer at one millimetre. A biopsy probably would have missed it. I know you didn’t mean to leave it in there but it’s probably a really good thing that you did.”

This is honestly how I feel. We both missed the part of the original pathology that clearly mentioned the absence of the clip. At the time we were both focused on the unexpected ductal carcinoma in situ that was under my remaining tumour. It’s all good. Did the clip have anything to do with the recurrence? Who knows. If it had been taken out with the original surgery would I have still had recurrence? Who knows. This woman is one of the finest breast surgeons in the country. I do know that. I worry that the fear of litigation makes it harder for doctors to admit their mistakes and that creates a risk for all of us. If you can’t share information about what went wrong you can’t learn from each other, or even from your own mistakes.

I used to see the same attitude in policing. We were often expected to be super human. Mistakes attracted media criticism, judicial sanction and sometimes a loss of career. Humans will be humans. Mistakes are inevitable. Creating environments where we pretend otherwise is dangerous and unrealistic.

My strength is returning. The aches and pains are annoying but I’d had fibromyalgia for years before all of this so living happily with chronic pain is my forte. It’s likely that some of what I’m feeling is fibromyalgia. It’s triggered by trauma. I’m pretty sure I’ve just experienced a bit of that.

I’m back at my regular yoga classes and I’m only modifying the back bends. Everything else is fine. I usually need to take a few more rests than I did before surgery but I’m doing well after only eight weeks. My range of movement through my arms and upper body is excellent and I’ve only got one tight area left that needs a bit more work. If you put your arm straight out from your shoulder, move it up to about 45 degrees and then try to move it backwards you’ll have found my sticking point. Now if you move your hand in a circle about the size of a large mixing bowl you’ll have defined it. Pretty good really, given that many women have permanently restricted movement. I’m certain this is down to my yoga.

I’m also back into my neglected garden and moving mulch like a human wheelbarrow. It’s very satisfying and a great way to rebuild my strength. It’s spring, so the blossoms are glorious and it’s a great source of joy to be out there with the worms and the soil and fine weather.

Most of the time my mood is great. I am just so happy to be alive. You know those times when you’re driving and you almost have a serious accident but somehow, you JUST miss it? I’ve got that feeling. A little to the left of here, a smidgen to the right of here, and I wouldn’t be here at all. I’d like to write some more about how coming so close to dying can have such a profound effect on living, but not tonight.

I do think about the cancer coming back but it’s not a frequent or particularly troubling thought. I am the sky. My thoughts are the weather. Everything passes with time. I’ll write some more about dealing with fear of recurrence another time. Anyway, here’s the photos I pr0mised:

P1060917 P1060918 P1060919

 

As I said, not as bad as it looks.

Next week my husband and I are off to beautiful Palm Cove in far north Queensland. I’ve told him this is his holiday. We’re going to do anything he wants to do. It’s spring so, just quietly, I’d rather stay home and work on my garden. But he’s had a rough time for just over a year now. His wife’s had cancer. He seriously needs a holiday.