Do we get what we expect?

I’m in the void between writing and publishing; that place where you send your baby book out to a few trusted people for what you hope are some minor corrections and constructive feedback.

And then you wait.

Early indications are that it’s readable and useful. I’m still on track to publish either late April or early March. I still don’t have a name I like. I started with ‘What if the Cancer Comes Back?’ but figured most people wouldn’t want to buy it. I moved on to ‘Worried Sick by Cancer’. Same problem. I really want a title that’s focused on what the book will help you to achieve, rather than the problem it’s trying to address.

Having said that, popular wisdom is that it needs the word ‘cancer’ in the title. Something to do with algorithms and search engines and online potential. I really like ‘Fear + Less’.
It’s a book about fearing less. But is this too obscure? And it doesn’t contain the word ‘cancer’. All thoughts and suggestions are welcome.

In the meantime, I’m contemplating the extent to which we get what we expect. I had coffee with a friend that hasn’t been to yoga for a few months. She hurt her foot and ended up in one of those ski boot looking things that they use instead of a cast. She was telling me that when it came off, her whole leg was wasted and that she’s still regaining strength.

Then she said this: “It will never be the same. I’m always going to walk with a limp.”

Hold on a minute. You’ve only had the boot off for a couple of weeks and you’ve already decided that you’ve got a permanent disability. When I asked her why she thought this she replied that her doctor had delivered this miserable diagnosis and that it reflected her own fears, so she saw no reason to reject it.

I reminded her that post-mastectomy I was told I’d be likely to experience some permanent restriction to my range of movement. It was likely that taking two F cup breasts from my body, and the subsequent scars running under my arms, would mean that my arms just wouldn’t be able to do what I was used to them doing. A combination of scar tissue and nerve damage would see to that.

When I put my hands above my head I still need to slightly adjust my left hand to bring it to the same height as my right. That’s it. Oh, I sometimes have some tightness to the left side if I twist. I can also put my hands into a reasonable ‘reverse prayer’ (put your hands into prayer position and now see if you can do the same thing behind your back), and a couple of weeks ago I held something called ‘crow pose’ for a good five seconds.

Crow pose involves crouching forward with your hands on the ground, putting your knees on the backs of your upper arms and then lifting your feet. Google for impressive pictures. Essentially, I can support my entire body weight on my upper arms.

I’m a 55 year old woman whose had a bilateral mastectomy.

I’m also close to four years since my diagnosis and a few months further away from three since my surgery. Recovery did not happen quickly. I still have some issues with my hands and my feet thanks to the nerve damage from chemotherapy and I also get annoying pain across various parts of my chest on a regular basis. It turns out that this is common post-mastectomy. I don’t accept that either condition is permanent.

I think of all the various aches and pains I’ve had during treatment, and all the way back throughout my life. What an amazing capacity our bodies have to heal. I also recognise that some recovery takes much longer. I think we have a mindset that a few weeks is a reasonable healing time because that’s about how long it takes for a cut to heal.

Here’s the thing. Skin heals quickly. It has to. It’s the outside, protective coating for our bodies. Other things heal more slowly.

I was told by my oncologist that whatever nerve damage I had at the end of twelve months was probably my ground zero. Things weren’t going to get any better. Then the radiation oncologist told me that nerves can take up to eight years to regrow. Eight years! So let’s wait until then before writing off my healing capability. Certainly things have improved slowly but if I’d accepted the first diagnosis I’d be focusing on the pain and discomfort and not bothering with physiotherapy to improve my condition.

I’ve recently read about some interesting research into chronic pain. People that experience it have a different kind of brain. Researchers can put 100 people through an MRI and detect which ones experience chronic pain by looking at the architecture of their brain. Here’s what’s really interesting; they can also predict which people will develop chronic pain using the same techniques.

It turns out that to some extent, pain really is all in our minds! At least, it’s more likely in those of us with a particular kind of mind.

This is huge. About one in five people report either chronic or sever pain. It’s the reason pharmaceutical companies invest so much money in pain relief. It also explains why so many of these medications affect brain chemistry.

This might sound like your propensity to experience chronic pain is just some kind of genetic lottery, but it’s more complex than that. A whole range of things directly impact the way our brain functions. It’s no surprise that chronic stress can cause exactly the kind of changes that result in chronic pain. People with higher levels of anxiety or depression are also at risk. Some recreational drugs, including alcohol, are also linked to the same kinds of changes in the brain that result in chronic pain.

So what about the brains of people that are less prone? Of course those with a calm disposition, and good techniques for coping with anxiety and stress do well. (Don’t ever let anyone try to tell you that there’s a human being on the planet that never experiences anxiety, stress, grief or anger.)

The robust mind might also belong to someone that used to be prone to chronic pain. These people have usually altered the way they live their lives to reduce stress and anxiety. They probably practice meditation regularly and may also use yoga, tai chi, qigong or some other form of calming exercise routine. Track these people over time and their MRI’s will show physical changes to their brains. They don’t cope with a pain-prone brain by soothing it, they actually change the architecture of their brains to something less likely to experience chronic pain.

Of course, what this means is that even my ‘permanent chronic pain’ diagnosis is now up for argument. It’s just possible that with yoga and meditation I can overcome pain. It’s certainly highly likely that I can reduce it.

I noticed a few months back when a visitor complained of a headache that our medicine chest was full of pain relief medication. I had stocked up on it, having been told I’d probably be taking it for the rest of my life. I couldn’t be sure about the last time I took anything but it was certainly months ago. I didn’t decide not to take the pills, or to endure serious pain. My pain just hadn’t been strong enough for me to want a pill.

There are still times when I consider medication, and still very rare times when I take something, but that’s a long way from six tablets a day. I think my progress is due, to a very large extent, to my daily yoga and meditation.

I also think that part of it is due to my expectation that we can always improve our health. There’s no upper limit to how well we can be. Ultimately, a doctor’s diagnosis is just an educated guess, an opinion based on what they thing other patients in similar circumstances have experienced.

Personally, I’d like to see doctors trained to talk about possibilities rather than absolutes. This isn’t about putting a shine on a bad situation. It’s about being accurate. I’d like to hear them use language like this:

Based on what we know about your condition there’s a possibility that you may have permanent pain or physical restriction and there’s also a possibility that you may not. The body has an amazing capacity for healing and it can sometimes take years before it’s finished the job of recovery. There’s a lot you can do to improve your health and there’s no upper limit to how well you can be.

I suppose we’re still years away from meditation being recommended, in spite of the overwhelming research that proves it’s more beneficial and more effective than any pharmaceutical your doctor can prescribe. Ideally, I’d like to see practices that included a psychologist to teach people the techniques they need to live a fulfilling life. I’m sure that would have more impact on public health than all the pills in the world.

Regardless of where you are with your own recovery, please know that nobody has the right to steal your hope. Doctors that make proclamations about your limits are sharing their opinions, and while they are very well informed opinions they are not a sentence. When it comes to recovery it’s best to keep an open mind. We may be capable of more than we think. Certainly we will never get more than we expect.

Before You Reclaim Your Curves

There’s a new pink charity on the block. It’s called ‘Reclaim Your Curves’ and it aims to provide support and information to women seeking breast reconstruction following mastectomy.

Here’s their web site:
Reclaim Your Curves

It’s a worthy aim. The choices we make following mastectomy are intensely personal and the provision of more information to women can only be a good thing, right? Well……maybe.

Impartial information that allows women to make an informed decision is a wonderful thing. If only this charity was impartial. Instead, I found it to be a promotional site for breast reconstruction.

For those of us that chose not to go down the reconstruction path, some of the language is disturbing (if not offensive). On the home page of their website there’s a short slide show explaining statistics. It tells us that 17 Australian women will be told today that they need a mastectomy but that “only two of these women will restore their bodies”.

Wait….. Restore?

Then there’s a cute video of women that chose reconstruction talking about how happy and proud they are with their choices. There’s nothing about the down side. No comment from women that chose not to have the surgery, or women that had it and regretted it. It’s a very one sided presentation accompanied by cheery music. Breast reconstruction; what’s not to love?

On the page ‘Get started with breast reconstruction’ there’s this comment:

“Breast reconstruction offers you the opportunity to get back something that breast cancer has taken away.”

Which would be true if reconstruction gave you back your breasts. But let’s be honest. It doesn’t. It gives you back a mound of fat and/or tissue transplanted from another part of your body that approximates a breast, or an implant that approximates a breast. But nothing can really give you back your breasts.

And then there’s your nipples. When people ask me if I miss my breasts I can honestly say that I don’t, but oh how I miss my nipples. Reconstruction can’t give me back the sensation of my husband kissing them or touching them.

Reconstructed breasts can never have the same sensation as real breasts. It’s interesting that in the section under ‘Myths about breast reconstruction’ myth number six reads:

“Reconstructed breasts have no feeling”

Which might lead you to believe that reconstructed breasts have normal sensation. But they don’t. Read on and the comment below this ‘myth’ is ambiguous.

“Women who have natural tissue reconstruction tend to regain more sensation than women who have breast implants, because nerve endings in the chest (if they are not damaged during mastectomy) sometimes spontaneously connect with nerve endings in the flap.”

Sometimes. So not always. Not even ‘often’. And implants not at all. Once again the language seriously downplays one of the significant issues involved in reconstruction; it’s extremely likely that you’ll have reduced sensation in your chest area regardless of which procedure you choose.

Another of the listed ‘myths’ is this one:

“Reconstructed breasts don’t look natural”

which includes the comment:

“Many women have reconstructed breasts that cannot be distinguished from natural breasts.”

I’m assuming this claim relates to the way reconstructed breast look in clothing. When I was researching breast construction I looked at all the photos I could find. The results varied from good to horrific but not once did I see a result that looked like natural breasts. I also saw plenty of reconstructions that would not have looked good under tight clothing. There are no guarantees.

Here’s a link to a site that contains some photographs of reconstructions so you can draw your own conclusions:

Breast reconstruction images

Keep in mind that these are considered to be good results.

The Reclaim Your Curves site is honest about the possibility of repeat surgery to achieve an acceptable result but once again, the risks are downplayed. Every single surgery carries risk and more surgery increases that risk. Women need to know that.

The site compares reconstruction rates in Australia with the UK and the USA and makes this comment:

“The Australian Society of Plastic Surgeons (ASPS) believes the comparatively low rate in Australia points to a lack of awareness of what is involved, and the procedure itself, as well as the lack of support services in regional, rural and remote populations.”

How about the possibility that rates are low because many of us considered our choices and chose not to have reconstruction?

Then there’s the very real concern about vested interests. The members of the Australian College of Plastic Surgeons have financial reasons for promoting breast reconstruction. And notice it’s their ‘belief’. It’s not a conclusion based on research.

Here’s some research:

Psychological effects of mastectomy with or without breast reconstruction

What they found was this:

“The results indicate that breast reconstruction is not a universal panacea for the emotional and psychological consequences of mastectomy. Women still reported feeling conscious of altered body image 1 year postoperatively, regardless of whether or not they had elected breast reconstruction. Health professionals should be careful of assuming that breast reconstruction necessarily confers psychological benefits compared with mastectomy alone.”

Then there’s the added concern that some of the sponsors of this site also rely upon breast reconstruction as a revenue stream. One of their major sponsors is Airxpanders, a company that makes a product used in implant surgery. There’s a clear conflict of interest.

Perhaps most dangerously there’s the claim that reconstruction won’t make detecting cancer recurrence any more difficult. This claim is true if you’re talking about detection using MRI or mammogram but it’s clearly not true if you’re talking about self examination. I’m a triple negative breast cancer survivor and risk of recurrence is high. I have already had the experience of finding a lump (thankfully benign) under my skin. It’s just common sense that a lump occurring under an implant or transplanted tissue is going to be harder to detect with your fingers. I think it’s dangerous and irresponsible to tell women otherwise.

My primary concern with this charity is that the tone and content seem to be strongly supportive of breast reconstruction. This is not a site that provides impartial information. The risks and complications associated with surgery are downplayed and there’s no comparison between reconstruction vs no reconstruction. It’s assumed that reconstruction is the way to go.

I suppose that Reclaim Your Curves could respond by saying that they assume any woman coming to their site has already decided she wants reconstruction, but I doubt that’s the case. I’m sure that there are many uncertain visitors seeking information. They deserve to know all their options.

The site includes lots of quotes from women happy with their reconstruction, and none from those that aren’t. Once again I feel this creates a false impression. Yes, reconstruction can be a wonderful choice for some people but it can also be a disastrous choice for others. An informed decision can only be made when women are given all of the information.

Then there’s this:

“Most women who have undergone reconstructive procedures are happy with their results and glad they pursued it. Lots of women get through with no problems at all, while other ladies unfortunately have some hiccups along the way, so it is good to get a realistic idea of what can be achieved and also how the stages might play out before you embark on this part of the journey.”

I think ‘hiccups’ seriously downplays the very real risks. This quote is from the section ‘Working out what you want’ which, once again, includes no information about why a woman might choose not to have reconstruction. Also, working out what you want apparently doesn’t require you to have a full appreciation of the risks associated with each procedure.

The only reference I could find to the risks is in their ‘myths’ section.  The myth in this case is ‘Something always goes wrong’ and the advice says this:

“Any surgery has a potential for complications, and breast reconstruction is no exception. Most women who have breast reconstruction, however, do not experience problems. Serious problems are uncommon, but the risk of infection, a negative reaction to anesthesia, delayed wound healing, excessive bleeding, hematoma, seroma and an unsatisfactory cosmetic result are possibilities. (Another good reason to find a skilled and experienced surgeon for your procedure.)”

Notice how the language states that serious problems are uncommon but gives no statistics. What’s uncommon? One in one hundred? One in twenty? I’d like to know before I submitted to a medical procedure of any kind. I’m also concerned that the language implies that a skilled and experienced surgeon is the way to avoid any problems. Yes, it’s ambiguous language and you could read it either way, but my concern is that even the most skilled of surgeons makes mistakes.

I’d like to make the case that providing women with support to make decisions about reconstruction should include sound advice based on facts and research. It should include all of the options available to women, including the option of not having reconstruction.

To their credit, a recent ‘Reclaim Your Curves’ event listed someone who was ‘flat and fabulous’ as one of the speakers, but she never appeared. The only explanation given was that she had been booked to speak but was unavailable.

The information evening has glowing reviews on their web site but to some of those attending it had disturbing shades of a sales promotion. An elderly woman was told that it was never too late to have reconstruction and there was a smattering of applause. No mention of the risks that this surgery would have for someone her age. A doctor reassured everyone that there was a “95% success rate” when it came to reconstruction.

But you see, a 95% success rate means that one in twenty women had a failed reconstruction. The presenter brushed away questions about failures with an acknowledgement that it wasn’t pretty and the audience didn’t want to know about it.

But the audience should know about the failures. They should understand what happens when the body rejects transplanted tissue or implants. They should know about the incidence of staph infections in hospitals and the risks associated with anaesthetic. To deny women this information is to deny them their right to a fully informed decision.

When I made the decision not to have reconstruction and wrote about it, I received lots of messages from people about that post. In the interest of balancing out the highly positive comments on the Reclaim Your Curves site, here’s a selection of comments from another perspective:

“I don’t think they should call it breast reconstruction. I didn’t get breasts. I got numb mounds on the front of my body. They never felt like part of me.”

“It makes me angry when I read comments about women reclaiming their femininity. I’m not less feminine without breasts.”

“My reconstruction was a disaster. My body rejected the tissue and it became stinky and rotten. They had to cut more of my body away to get rid of the infection. The pain and the scarring were terrible. I wish I’d just had a mastectomy and left it at that.”

“Nobody told me how painful it would be. I had a morphine pump after the surgery and even though I used it I was still in the most terrible pain. The nurses told me it was normal. I still have nightmares.”

“It was just assumed I’d want a reconstruction. It wasn’t discussed with me. I didn’t get a choice. When I healed from my mastectomy I had these flaps of skin that the surgeon said would make reconstruction easier. But I didn’t want reconstruction. Now I’m trying to decide if I should risk more surgery or just live with the results.”

“The healthiest choice for me was to just have the mastectomy. I wanted to get my life back to normal as soon as possible.”

“After reconstruction I couldn’t exercise for months. I gained a lot of weight and that’s had a serious impact on my health. I get anxious about how my weight affects my cancer risk.”

“I decided to have the mastectomy and just wear foobs. After a couple of months of messing about with bras and padding and prosthetics I just stopped worrying about it.”

“If you look at me you wouldn’t know if I’d had a mastectomy or if I’m just naturally flat chested. I’ve done weights to build up my chest muscles and I think I have a nice athletic shape now. I don’t miss having breasts at all.”

and finally, the saddest message I received, from the husband of a woman that underwent breast reconstruction:

“Katie wasn’t sure about reconstruction and even though I had my doubts I encouraged her to do what ever she wanted. There were complications and she lost a lot of blood. Then she got infected and became very ill. I was beside her in the hospital when she died and all I could think was that if I’d told her not to have it, or that I didn’t want her to have it, she’d still be with me.”

This brave man now spends some of his time telling his story and encouraging people to consider the small but very real risk of death that comes with reconstruction surgery. He tells me he’s particularly concerned about any message that implies that men will have a preference for reconstruction;

“It wouldn’t have made any difference to me. To be honest, I found the idea of moving part of her body up to her chest a bit freaky, but I wanted to support her so I never said anything. I wouldn’t have loved her less without breasts.”

It is possible to provide clear and unbiased advice about breast reconstruction and a number of sites already do this. The Breast Cancer Network (Australia) site has this:

BCNA Breast Reconstruction Advice

It’s clear and impartial advice that supports the right of all women to make whatever choice best serves them, including the decision to not have reconstruction (although there is a link to the Reclaim Your Curves site).

And the UK cancer research site has this:

UK Cancer Research Breast Reconstruction Advice

Both sites are, in my opinion, much better sources of advice on breast reconstruction. The BCNA site openly considers the possibility that a woman may not want reconstruction and the UK site is very clear about the possible complications associated with any kind of reconstruction procedure.

It will be interesting to monitor the progress of this charity. In particular, it will be interesting to see where their funding comes from and how it’s spent. There’s a case to be made for diverting the funding that this charity attracts to other more needy causes, particularly given the clear vested interests of some of the supporters and participants.

Ultimately my issue is with providing all women with freedom of choice. I fully support any woman’s decision to have reconstruction if it helps her to recover from the physical and psychological impact of breast cancer, but anyone making this decision should have a full appreciation of the risks, the facts and the potential for things to go horribly wrong.

Reclaim Your Curves does not, in my opinion, provide unbiased information. In fact it’s a very much a case of ‘me think thou dost protest too much’. To put it another way, there’s an awful lot of justification for having reconstruction and not a lot of information on the risks or potential complications.

If you’re faced with the inevitability of a mastectomy then reconstruction should certainly be one of the options you consider, but you should have balanced and unbiased information that supports what ever decision you ultimately make.

You shouldn’t feel ashamed of your choice to have reconstruction, or your choice to NOT have reconstruction. There are pros and cons for both. Interestingly, the most recent piece of research I’ve seen reported that women choosing reconstruction did so for aesthetic reasons, and women choosing not to have reconstruction did so for health reasons.

This is entirely consistent with my own experience. Having researched breast reconstruction I ultimately decided that I wouldn’t have it. I don’t deny that it’s been wonderful for many women but it wasn’t for me.

The case in favour of having the least amount of surgery with the shortest possible recovery time is worth considering. And that’s how my husband summed it up. He was incredibly supportive and determined to let me make up my own mind, but when I ultimately decided on a mastectomy without reconstruction he admitted  his relief.

“I know I would have dealt with it, but the idea of moving your tummy to your chest was freaking me out. There’s just something not right about it. You are not your breasts. I love you. I want you well. I want you well as soon as possible, without more surgery and more surgery after that. I won’t love you less without breasts and I’m proud of you for making a decision that gave you the least possible surgery and the shortest possible recovery time. Your health is my top priority. Not your appearance.”

Yes. That’s what it comes down to. My core values are about my health. Not my appearance. Breast reconstruction would have meant longer surgery, greater risk, longer recovery and the possibility of additional surgeries and all of those associated risks. And for what? Something approximating breasts but not really breasts.

I know there are women that think of their reconstructed breasts as real breasts. I also know that I wouldn’t feel this way about them. My friend Leonie summed it up this way:

“For me, breast reconstruction was the equivalent of giving me a stuffed toy to replace my pet dog after it had died. My breasts are gone and I would rather deal honestly with the reality of that than pretend that any kind of surgery can replace them. It can’t.”

I know that not everyone feels this way, but Leonie, me, and plenty of other women do. Our experience is no less valid or relevant than the experience of those women happy with reconstruction. It is certainly validated by the many women that have subjected their bodies to reconstruction only to regret it.

If you’re considering reconstruction then please know this; Not having it is a legitimate choice. If you’re feeling like that option isn’t on the table then speak up. Ask questions. Ask doctors to give you information about the difference it makes to your recovery time, your pain, your risks, your potential complication and your long term health. Make the decision that best helps you to recover but know that there are many of us out here that chose not to have reconstruction because we didn’t think the risks were worth it or we didn’t think the results justified the cost to our health.

I don’t need to reclaim my curves. I still have curves. I just don’t have breasts. And I’m very happy about that.

One Year Scans Are Good!

Great news. I had my one year scans last Friday and there is no sign of cancer.

Whew!

I’ve been looking and feeling great but my history tells me this is no guarantee of anything. The last time I looked and felt great we walked into the surgeon’s office expecting to be told that everything was okay and instead we got the news that I needed a mastectomy.

Appearances can be deceiving.

So I am greatly relieved to have the news that my internal health is aligned with my external appearance.

My surgeon decided that the benign lump I discovered several weeks back should be removed. “With your pathology and history there’s no such thing as a good lump.” Fair enough. So yesterday I attended her surgery and their Fellow (someone very close to being a surgeon who serves a kind of apprenticeship for a year) cut the lump out of my chest and stitched it up while we chatted about vaccines, yoga and permaculture.

The stitching was the worst part.

I had expected it to only involve a couple of stitches and a bandaid. Instead, he decided to use some heavier sutures to make sure it all stays stitched because my tissue was irradiated as part of my treatment and this makes the tissue fragile. Then there was some top stitching with a finer thread. All while fully conscious.

I’m surprised I didn’t go into shock.

I think it’s just one of the many changes that’s happened as a consequence of my treatment. I’m now a lot more at ease with medical procedures, blood and having bits of my body removed. Still, it was definitely a surreal experience.

When he finished he explained that he’d made the incision a bit larger than it needed to be so he could join it on to the smaller of my scars ‘for a better cosmetic result’. Seriously? Have you seen the pictures of my chest? I’m beyond worrying about how pretty it all looks. I wish he’d listened to me when I said I wanted the least amount of surgery and that I didn’t particularly care if I had a third scar.

Apart from really not caring so much about appearance, the scar he’s joined it to has already been opened up twice and the last time I had problems getting it to heal again. I’d really prefer he’d left it alone. I suppose it’s possible that ‘appearance’ includes avoiding puckering, in which case I’m grateful. I don’t wear a lot of skin tight clothes (except for yoga) but not having odd bumps on my chest would be my preference.

I understand that surgeons are trained to give the best appearance possible, and I applaud this shift. I used to be that a mastectomy involved heavy scaring and extensive skin grafts. Nobody worried too much about what we’d look like afterwards.

I also know they often deal with patients that say they don’t care about something only to discover post surgically that they really do.

It’s all about communication and taking a bit of extra time.

The lump will go off to pathology, just to conduct a routine biopsy, but even looking at it he was happy that it’s extremely unlikely to be cancer.

One year down and four to go.

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.

P1070559 P1070558 P1070557 P1070556

 

 

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.

Six Months Post Mastectomy

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

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

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

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

In a word, brilliantly!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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:

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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.