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.

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Three Years Today!

It’s official.

Three years ago today my husband and I sat in a small office at Breast Screen with a doctor we’d never met and a counsellor I’d seen twice before to receive the news that I had triple negative breast cancer.

I was pretty sure before the appointment that I was going to receive a cancer diagnosis. I’d seen the three (later four) suspicious cloudy blobs on the ultrasound and read the concerned face of the doctor taking the multiple biopsies.

I’d cautiously and reluctantly read up on breast cancer but I’d never heard of triple negative breast cancer. I thought they’d tell me there was no urgency and that I had several weeks to think about what I wanted to do next. Instead the doctor asked if I had my usual doctor’s phone number on me so that I could get a referral to a surgeon as soon as possible.

“The cancer you have is much more aggressive than most breast cancers. You need to regard treatment as somewhat urgent. I wouldn’t leave it more than two weeks.”

My father died of bladder cancer at 58. I used to imagine how odd it was going to be to reach 58 and realise I was now the age that Dad was when he died. Suddenly 58 felt like a worthy goal rather than a curious milestone. I was convinced that I was going to die.

I wandered my garden sobbing. Not since my Dad’s death had anything been so upsetting. This was a kind of personal death. No more dancing through life as if it was going to stretch on and on for decades. No grandchildren. Perhaps not even being here for my daughter’s marriage. All of the joys of my future, suddenly squashed under the weight of a cancer diagnosis.

In a cruel twist of timing, my daughter was in China at the time, holidaying with her Dad and his partner and the love of her life. We had already had days of painful discussion about whether or not to let her know that there concerns about my Breast Screen results or whether to wait until she came home.

On the one hand, we didn’t want to spoil her holiday but with social media we knew that keeping it a secret was going to be impossible. My close friends were supporting me through the weeks of anxiety. (I still wonder why I didn’t just see my doctor and have the biopsy done privately! I would have had the results in days and not weeks. Shock.) Zoe was bound to pick up on the fact that something was wrong and to be very angry about not hearing the news before everyone else.

So I made the hardest phone call of my life.

With the experience of a police officer whose given death messages I told her plainly and quickly. There’s no point drawing this kind of conversation out. It just builds anxiety. Of course she wanted to get on a plane and of course I convinced her there was nothing she could do here. But how I wanted to hold her.

The next day she posted to Facebook: “I know I should say something deep and profound here but all I can think of is ‘fuck cancer’.”

It was a gift. I’d dug my own grave and was stretched out in the bottom of it. I was convinced that my father’s DNA, the stress of my previous occupation and the usual collection of unhealthy habits had collided.I was going to die. And then with one angry sentence my daughter turned me around.

I climbed out of the hole and decided to fight. I decided to do everything I possibly could to beat cancer and to stay well. I spent hours on the internet researching triple negative breast cancer. I read books about cancer treatment and dealing with chronic illness. I started this blog. I hoped that writing about treatment would help me to stay on track (it did) and that perhaps sharing my experiences would benefit other women (it has).

It can be difficult to find information about triple negative breast cancer that isn’t terrifying, so I also started a Facebook page and started sharing information about current research, along with small chunks of inspirational thinking that helped me to avoid falling into hopelessness.

Back then I compared fighting cancer to climbing a mountain. I’ve got a better analogy. Cancer is like suddenly discovering that the path you’ve been walking on is unstable. It collapses beneath you and you slide, quickly and dangerously, down to the bottom of a deep, dark pit. On the way down you get injured. The extent to which you get injured is partly determined by how you handle the fall. The rest is luck.

When you get to the bottom you have to make a decision: Stay and die or try to climb back out again. You know the climb will be long and difficult. You know there’s a risk you could back-slide, or wind up right back where you started. You don’t know whether to go back the way you came (because at least you know the risks) or to try climbing out using a different path. So many choices and none of them are clearly better.

As you climb you find there are other people on the same journey. Some of them shout out advice to you but you don’t know if their progress is any better than yours. Some of them fall past you and you never see them again. Some days you feel like you’ve made great progress and other days you slide back towards the pit, terrified that the slide will go all the way to the bottom again.

Your medical team fly in from time to time and drop supplies. Sometimes these make the climb easier and sometimes the weight of them makes you want to sit on the side of the slope and cry.

Way up ahead, towards the light, you can see researchers building bridges and stairs. If only you can stay climbing long enough to reach them.

More people slide past you on their way back down. You want to call out encouragement to them. You want to tell them not to give up and to climb and to keep climbing, but part of you knows that everyone has to make their own decision. There are no right answers.

Finally the edge of the cliff seems within reach, but you’re so tired. This is when a lot of people give up. You know that. It looked closer than it really is. It seemed within a days reach but that was weeks ago. The people that love you are up there in the light, calling down to you. They’ve been there the whole time. Even when you couldn’t hear them. So you keep going.

One day at a time.

Just keep going.

And then the ground starts to become less steep and your progress feels more certain. There are days when you can actually start to enjoy the scenery. Recovery seems possible, even likely, but you can’t trust it. You keep going.

I don’t know when I made it over the edge of that cliff. Was it today? Was it a few months ago when my doctor ordered my three year scans early and I got the news I was cancer free? I don’t know. I feel as if I’m out of the pit now and back on solid ground. Life gets back to being about gardens and friends and good food and laughter. We talk about cancer as if it’s history.

But here’s the truth.

Once you’ve had that path drop out from under you it’s unlikely you’ll ever trust solid ground. It seemed safe the first time around, just before you fell into the pit. You know now what other people don’t; the path can always drop away at any time. This was always the truth. Maybe this is what they mean by ‘ignorance is bliss’. We would all prefer not to know this.

And so we all make a decision. Do we stay frozen by fear or set out on the path again?

Slowly, slowly I have crept forward over the last year, testing the ground beneath my feet. Eventually I decided I will never be able to trust it. I also decided that it’s okay. Not trusting it has made me exquisitely aware of the beauty in the every day.

I sit here typing, sharing my thoughts with people I will never meet, watching the sun warm up the winter garden. There’s a heavy dew this morning and the light is refracting. When my daughter was tiny we would watch the rainbow sparkles and call them fairies.

Today has music and ageing cats and Graham’s sourdough. Today has laundry to fold and firewood and theme music. Later, we’ll head out to lunch with my very adult daughter and her lovely partner to celebrate his birthday. We’ll catch up with his lovely parents and eat great food and laugh.

Life goes on.

 

I am grateful for still being alive.

I am grateful for all of the people that helped me get here.

Thank you.

All of you.

Whether you’re someone on my medical team that provided primary care, one of the many amazing nurses that supported me or one of the cheerful receptionist that greeted me (never doubt the difference you make).

I am grateful to all of the people that contributed to my care and recovery; to the woman at the wig library, to the staff at the local restaurant (Reef) that cheered me on, to the stranger in the waiting room that said “You look great today!” when I had no hair, to the young woman behind the Coles checkout that cried and hugged me. To everyone that smiled and didn’t look away. Thank you.

Thanks to all my virtual friends, whether through this blog or Facebook or the BCNA site. Your support and humour has often been a candle in the night.

To all of my real world friends, old and new, that hugged me and held my hand and drove me to treatment and took me walking and fed me and loved me. I am truly blessed to have you all in my life. And to those that stepped back or moved away, I wish you every happiness and please know I understand.

Special thanks to my yoga teacher, Emma, and my massage therapist, Maryanne. You have both made significant contributions to my physical and emotional recovery.

To Mum, for being stronger than I knew you were and for stubbornly refusing to accept the possibility of my death. I love you.

To Zoe, for telling cancer where to go and for being my single greatest reason for living. For continuing to study hard and live well when you had every reason to fall in a heap. Mummy’s better now, Sweetheart. I love you more than all the leaves on all the trees.

And finally to Graham. I don’t know how I would have coped if this had been you and not me but I couldn’t have done it better.

For starting all of this with “You are not your breasts and nothing is more important to me than keeping you alive and if you have to lose them then that’s what we have to do.” For being the only person that could make me laugh when I’d given up on laughing. For helping me to really understand why a good marriage is so much better than being alone.

Most of all for this:

The night before my double mastectomy, when I asked you if you wanted to kiss my breast goodbye, you said, “No. I’m over them. They tried to kill you.”

And the next day when they took the binder off to check my wounds and I had horrible tubes sticking out of me with bags attached to collect the fluid and even the thought of it all made me gag, you didn’t leave the room and you didn’t flinch.

You’ve never flinched. You’ve grieved and you’ve worried for me but you’ve never looked at me as if I was damaged. I’m just Meg to you. I love you. I didn’t think I could love you more than I did when all this started. I was wrong.

I was going to use today to wrap this blog up and say goodbye. I thought it might be time to move on, but I’ve realised that owning the whole experience and integrating it is part of my recovery. It’s healthy to keep hold of the whole experience and to move forward informed by it. Life can be better after cancer.

On to the next thing.

Love to all.

I am deeply and humbly grateful. Thank you.

Meg

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 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.

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.