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.

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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.

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.

 

One Month After Mastectomy

It’s one month today since my bilateral mastectomy. The phrase ‘bilateral mastectomy’ seems far too mild for what’s happened. I’ve had my breasts cut off.

Physically I’m healing well. The scar on my right side is neat and clean. This is my ‘healthy’ side but I decided to have this breast removed at the same time as the other one, partly because I thought I would feel better being symmetrical. I do. I also had it removed because I don’t think I would have stopped worrying about my remaining breast being a source of cancer.

I am happy with the decisions I’ve made. I’m not happy about having to make them.

My left side is puckered and the pores of my skin are noticeable. This side was treated with radiation in the earlier months of this year. The skin was never going to cope as well with surgery. I’ve been fortunate to have a well healed mastectomy scar because complications can include the wound re-opening or the tissue dying. The wound from the breast conserving surgery in July (when we discovered the invasive cancer that led to the mastectomy) is not healing well. There’s a small hole in the wound and a small amount of discharge from it. I’m seeing my surgeon on Thursday to have it ‘re-excised’, which means cut open again and rejoined.

There are two veins running down my body, starting from the ridge under the place where my breasts used to be. There’s one on each side although they are in different places. They feel like indentations under the skin, as if the vein has collapsed. There’s a name for this. Something disease. My surgeon did tell me but I’ve forgotten. It seems that both veins get pinched off during surgery to prevent bleeding. In some people they collapse. They are uncomfortable and feel a lot like the drains felt when they were under my skin post-operatively. Sometimes they are painful, as if someone has cut two lines down my torso.

(Note: This condition is called ‘Mondor’s disease’. I’m back here in February of 2016 because it’s just recurred on my left side.)

There’s still a strange intermittent sensation in my left shoulder, as if someone is jabbing me with a needle. My doctor says this is nerve pain and she’s prescribed more gabapentin. I’m only taking it at night and so far it doesn’t seem to be making much of a difference. I could take it in the morning as well but it makes me feel like I’ve had half a bottle of wine, which sounds like it might be a nice thing but it isn’t when you need to drive somewhere.

The gabapentin is also for the nerve pain in my back and chest. How ironic that one of the great benefits of a mastectomy is not having to wear a bra and yet one of the consequences is felling like I’m wearing a very tight bra! This is also a common complication of a mastectomy and it should improve with medication and time.

There’s a fluid build up on both sides. Yes, this is another common side effect. Interestingly my healthy side seems to collect more fluid than the side where I had the cancer. My doctor drained about 60mls out of the right side when I saw her last week. It feels as if it’s just filled right back up again. You can leave seromas alone and they will gradually be absorbed over a few months. There’s something about them that makes me squeamish. I’m hoping when I see the surgeon on Thursday she can drain them again and that this time they will stay drained. I suspect it’s just one of those things, like so many things, that needs time and patience.

Mentally I suppose my status is about the same as my body. Healing slowly. Not quite there yet. I still get a shock when I catch sight of myself in the mirror. I don’t look terrible. My beautiful daughter says I look slim and ‘like a fashion model’. My wonderful husband tells me I’m gorgeous. I’m just waiting for my brain to integrate this new version of my body. When I close my eyes and think of myself, I still have breasts. When I wake up in the morning I forget I don’t have them. I still feel them. They are my phantom breasts. There’s no question that I look much thinner. This is odd because, apart from the weight of my breasts, I’m no thinner than I was before the operation. A flat chest reads as ‘athletic’. I also think that looking down and seeing my tummy makes me much more likely to hold it in.

One of my friends asked me last week how I was feeling. “A bit flat.” I replied, before I realised what I was saying. Puns aside, I have felt flat. I really only had two weeks to process the news that my cancer was back and invasive. Then there was surgery and two or three weeks of just healing, recovering from the anaesthetic, letting my wounds stabilise before I lifted anything heavy and eating well to get my energy back up. It’s really only now that I’ve had the opportunity to reflect on it all.

I am now a statistical outlier.

Before all of this I knew there was one chance in four of the cancer coming back in the first five years. I knew that if I made it to five years the chances of the cancer coming back would be significantly reduced and I was looking forward to throwing a big five year anniversary party. Not only did the cancer come back, it came back just inside the first year and was already invasive when it was discovered. This is so unusual that there’s no data for it. The treatment I had should have worked. It has worked for the majority of women that have had it. The radiation oncologist speculated that I had ‘dormant DCIS’ which I found interesting because I thought the whole point of radiation was to kill off anything that wasn’t quite a cancerous cell, along with any stray cancerous cells.

My surgeon initially speculated that I might have ‘radiation resistant tissue’. This would fit with the way my skin held up so well during treatment. A couple of months ago I noticed the hair in my left armpit growing back. It’s one of the only benefits of radiation, not having to shave under that arm any more, so I was surprised. I remember thinking at the time, “I hope this doesn’t mean my radiation failed.”

At my last visit to the surgeon I asked her what she thought went wrong. I wondered about the marker clip that had been left behind during my first surgery. The calcification that showed up on the most recent mammogram appeared to be associated with the marker clip. It was trailing in a line away from the clip, and was thicker where it joined the clip, a bit like the tail of a comet. I wondered if the movement of the clip through my breast tissue might have caused scarring that increased the risk of recurrence. My surgeon replied that the clip shouldn’t move and that it wasn’t the cause of the recurrence. She had intended to remove it during the first surgery and missed the reference in the initial pathology report stating that there was no sign of the clip in the tissue sample. I missed it too. I was too anxious about the discovery of DCIS under the tumour.

The doctor that inserted the clip did say at the time that they can move. She also told me when I went back for the second surgery that it’s common practice to leave them in so that the correct area can be scanned in followup testing.

I had neo-adjuvant chemotherapy (before surgery) with the intention of treating any cancer anywhere in my body and, simultaneously, hitting the four tumours in my breast. This treatment killed three of them. When the remaining tumour was removed my surgeon did so with clear margins but obviously left behind an area of tissue that previously contained the three dead tumours. This is standard practice because it minimised the loss of breast tissue. I wonder with triple negative cancers if it might not be good practice to remove all of the effected tissue for biopsy.

I am not a doctor.

None of my speculation is meant to constitute any criticism of my medical team. I honestly believe that I’ve had the best possible treatment available. It’s my investigative background that causes me to speculate. I’m curious. I also think that my unusual circumstances are an opportunity for discoveries that might benefit other people with triple negative breast cancer. I want to know what went wrong. I want to know why this happened.

My surgeon gave me this answer: “We don’t know.”

This is the bottom line when it comes to cancer. The best available treatments work for most of the people most of the time. Inherent in that statement is the implication that some of the time they don’t work, or don’t work as well.

I am not unreasonably anxious about what this means to my survival odds. It can’t be good. You would think that having no breast tissue would mean you can’t get breast cancer but it doesn’t. Triple negative cancer notoriously recurs in scar tissue and I now have a whole lot more of that. Who knows if keeping my healthy breast would have been a better option? Who knows if keeping my high risk breast would have been less of a risk than all this scarring? The honest answer is “Nobody.”

One of the greatest complications of cancer research is the difficultly in establishing what the best choices are for any individual patient. Even something that’s been highly successful for most people might not work for me, or for you. We all bring our own genetics, histories, habits and pathologies to the treatment room.

There’s also a ‘bleeding edge’ to cancer treatment. I read the other day that they are predicting an end to chemotherapy inside ten years. It looks like the future of cancer treatment will include re-engineering your own T cells and putting them back in your body to fight the cancer. This is not science fiction. There’s a doctor in Seattle in the USA already using this technique to treat childhood leukaemia. The treatment we have available to us today is just the best available, not the best. In time there will be a cure. Every single person with cancer hopes to live long enough to receive it.

It’s possible that I could still get local recurrence. My surgeon has told me to watch for lumps under my scars, under my arms and in the ridge above my collarbone. It’s also possible that I could get metastatic disease. If I get this cancer anywhere else in my body it’s still called ‘breast cancer’ even though I don’t have breasts and that’s not where the cancer would be. Picking up metastatic disease is more difficult than spotting local recurrence. It’s most likely to happen in my bones or my brain or perhaps one of my major organs. Symptoms might be vague or non-existent. My surgeon’s advice regarding anything suspicious is to wait a couple of weeks and see if it changes or goes away.

My greatest fear is that my life is now a cycle of recurrence followed by treatment followed by recovery followed by another small island of time where I’m relatively well and able to enjoy life. Ultimately that’s followed by recurrence that can’t be treated. I am frightened.

I’m dealing with the fear by making room for it, by describing it here and by accepting that for anyone in my situation it’s a completely normal response. I’m also practicing yoga and meditation. Most importantly I’m taking time to really enjoy the things that matter to me. I’m closing my computer. I’m spending time in the garden. I’m cherishing time with my husband, my daughter and my friends and extended family. Life goes on.

It could be all my fears are for nothing. It could be that the cancer is gone forever.

We don’t know.

 

Silicone, Scarves and Singlets

When the breast care nurse brought me some samples of silicone prosthetic breast in hospital I juggled them. We laughed, and I told her I really just wanted to put something on my Facebook status about juggling breasts.

They are heavier than I thought they would be. Of course, if I had only had one breast removed then having something that weighed about the same would be important. I’m told women in this situation can have problems with neck pain, shoulder pain and even balance if they don’t wear a prosthetic breast. It’s less of an issue if you’re naturally small breasted but mine were large. My pathology tells me they were close to a kilo each.

Of course, having had both removed means I now have the option. Prosthetic breasts or no prosthetic breasts? It’s not a question I ever imagined having to ask myself. I’m still undecided.

I can’t really wear anything just yet. I’m still healing. I have seromas, a build up of fluid under the skin, on both sides so best to stick with singlets for now. I have the contact details of a woman that will come to my home and fit me with artificial breasts and bras to go with them. I also have the address of a shop in the nearest major city. If I want to wear something swimming there are special ‘light weight’ prosthetic breasts, but the breast care nurse tells me that the standard silicone ones are fine. You would think so. They make bake ware out of silicone.

The Breast Cancer Network Australia sent me a bra and some ‘soft form’ inserts to wear while I’m recovering. I asked for something in a C cup rather than my original F. They look strange. They look stranger to me than my dolphin chest. They remind me of embarrassing performances by footballers at end of year functions where dressing up as women is something of a tradition. They look really obviously fake. I don’t know if bigger ones would look any better. Decisions, decisions.

I still get a shock when I look in the mirror. I want to make jokes about someone stealing my breasts while I slept but I suspect I’m the only one that will find that even remotely amusing. I don’t hate how I look. It’s just a shock. When you’ve been large breasted all of your adult life, suddenly being flat chested takes some getting used to. The bonus is not having to wear a bra. I’m loving it. I’m inclined to not wear one ever again. That would mean just dressing for my new body shape.

My friend, Jo, always looks fabulous. When she first had her double mastectomy she didn’t bother with prosthetic breasts but in recent times she’s decided that there are some outfits that just look better with them. I’m the kind of person that doesn’t wear fake eyelashes. I stopped colouring my hair when I turned 50. I also think it would be odd for me to spend most of my time just not bothering and then to wear breasts occasionally. Will it be a thing that people notice and comment on? “Is Meg wearing fake boobs tonight?” Worse, will it be a thing that people notice and think is odd, but don’t comment on?

I decided to spend this week going through my wardrobe. Yes, I’ve only been home from hospital for a week and I knew this was going to be upsetting, but my thinking was that this was a task best done early and quickly. A bit like ripping off a bandaid. What I didn’t want was months of standing in front of my wardrobe, choosing something to wear and then putting it on to find it looked terrible. I pulled whole sections out and dumped it all on the bed. It took me a couple of days and only a few tears to get through it all.

I’m about 168cm tall (5’6″) and a size 12 or 14. At 52, I don’t have a lot of low cut or revealing clothing but the first thing to go was anything that clearly needed breasts. That included tailored shirts with darts (which look like arrows pointing to where my breast used to be!) and anything cleavage dependant. Surprisingly, some cross over tops still work but I need something under them.

Queue the joy of singlets. I already had a large collection of singlets, mostly from Target and Big W, that I wear under sheer shirts and jumpers. It turns out that a lot of things I can’t wear on their own work just fine with a singlet underneath. Same goes for scarves. There’s now a lot of great Youtube videos on tying scarves in all kinds of ways. Here’s one of my favourites:

The one about half way through called ‘the magic trick’ is a personal favourite. The great thing about a scarf is that they give you interest and detail at the neck line and help to disguise the lack of a bust line. Before I consigned anything to the chuck pile I tried it with a scarf. I still managed to almost halve my wardrobe.

It did help that my daughter was getting first pick of anything I didn’t want. There were a few things that I knew she’d wanted since I’d bought them. She was so excited to get the floral cardigan that looks wonderful with her curves but odd with my lack of them.

It was also an opportunity to seriously reconsider some of those time travellers from the 80’s and the 90’s. I cried over the red velvet Mr K evening gown. Ever notice how really beautiful evening wear never goes out of fashion. I bought this dress for a ball many years ago, wore it to a work event in China where I met Pelé and to a Police function in Wollongong with my new boyfriend that I met on the internet. We’d only been dating a few months and it was a big call to walk into that room with me. He’s fearless. It’s part of why I married him. When he discovered me crying over that dress he put his arms around me and held me and told me that he loved me.

There were also some pleasant surprises. Some things work better without breasts. Anything with a cowl neck, unstructured jackets and shirts, and coats that fall mid thigh all look great. Anything with a large collar or pockets and detail across the chest, and caftan style tops with big patterns are also back in the wardrobe. Detail is my new best friend.

Out are tops with waterfall hems that used to balance out my large breasts but now make me look bottom heavy and triangular. Things in plain, solid colours are now relegated to under-wear. They’ll be fine under shirts and jackets but they show every little ridge and bump in my chest. Same goes for gypsy skirts that hang to my mid calf and have a bit of gathering at the waist. Nope. On the bright side I think I’m going to be able to wear shorter, straight skirts that show off my legs. Thank you (again) yoga!

One of my favourite cardigans almost went out until my husband suggested changing the way I wear it. By wrapping it across my body and pinning it at the side it looked great. This sent me back to the chuck out pile to see if anything else could be worn differently. Nope.

Most of my knitwear made the cut and all of the pants and jeans are just fine. I no longer own a single yoga top. The built in shelf bras now sit almost as low as my waist. Lucky I have all those singlets.

It worked through all of my clothes over the course of two days and I now have a wardrobe full of things that I know will look great. I’ve got some new combinations that are going to work really well and a bit of a wish list for the next time I go shopping.

And boy do I have a really great reason to go shopping!

Once I’d sorted everything I went back through my chuck out pile and asked myself if there was anything that I loved so much I would want to wear artificial breasts to keep it. There wasn’t. Not even the red velvet dress. Clothes are just clothes.

This is my new body. I love how brilliantly it’s stood up to all of the awful things I’ve put it through. I’m not embarrassed by it or ashamed of it. I think it looks just fine without breasts and until that changes I’ll be passing on the silicone and sticking with the scarves and singlets.

I’m also open to the possibility that, like Jo, I might decide somewhere down the track to wear prostheses. And it would give me another reason to go shopping.

 

Life After Breasts

WARNING: This blog contains a photo of my naked, breast-less chest. If post-surgical photos make you squeamish you might want to skip this one.

It’s been eight days since my bilateral mastectomy.

I’m still in hospital waiting for the last of the four drains to come out. Drains are plastic bottles with little green concertinaed plugs on them that provide pressure. They’re connected via tubes that run under the skin to the wound site. The drain serum as it collects and prevent the formation of seromas.

Yes, it is very strange having tubes coming out of my body.

When the volume of fluid drops to 30mls within a 24 hour period the drains come out. Three down, one to go. At this stage it looks like it will be out tomorrow.

There’s a seroma on the side where both drains have been removed. It feels like water under the skin. When I woke up this morning it seemed fairly swollen but I’ve been doing what I can to help it drain naturally, through my lymph system, during the day. The breast care nurse has taught me how to gently massage from the seroma down to my groin. I’ve also found running warm water from the shower over it seems to help, particularly if I hold the arm on that side over my head.

I’m trying to walk at least half an hour every day, even if it’s just around and around the ward. Walking means I’ve been able to confidently refuse the twice-daily heparin injections they’ve been giving me to prevent blood clots. My doctor asked me to do this because if she changes the prescription and I get a blood clot she’ll be liable. She agrees I don’t need them. Heparin is injected into the skin. I’ve had most of them in my tummy which is now covered in nasty blue and yellow tinged spots. An anti-clotting drug will, of course, cause bruising.

Walking is also a great way to become more familiar with my new body. Losing about two kilos from my chest has an impact on my posture, my balance and how I move. It’s an odd feeling. It reminds me of being on a boat, where you never quite feel stable.

I’m concentrating on keeping my head up and my shoulders back. It seems a lot of people that have had mastectomies curl forwards. I think that would only emphasise the fact that I don’t have breasts.

Some of the staff have made comments about me wearing out the carpet or being a bit driven. Give me a break. My doctor encouraged this and I’m trying to do the best thing for my health. On the bright side, the breast care nurse tells me that my walking has inspired some of the other patients to get out of bed and start moving. Gone are the days when bed rest was considered to be the best treatment for anything. Bodies need to move to be healthy.

I’ve taken photographs of my surgical wounds. A number of people who have already had mastectomies recommended this. They look brutal. They don’t feel it. I’m surprised at how little pain has been involved and how quickly I’ve started to feel well. I’ve got physiotherapy exercises to ensure I maintain good movement and flexibility as I heal. Kylie, my surgeon, tells me that things will start to feel a lot tighter over the next few weeks as the scars heal. Then they will gradually loosen off again as I exercise and massage the scars.

Part of the healing process involves the skin adhering to my chest. There’s a few lumps and bumps in the finished result, particularly on the side where I’ve had radiation, but I think it’s going to look okay.

I can still feel my nipples. I don’t have any, but it feels as if I do. My surgeon says this is common. Curiously, I can feel them on my existing chest and not sitting out in front of it where they would have been if I still had breasts. I like being able to feel them. My body doesn’t feel as if anything is missing. When I put my hand on my chest it’s as if my nipples are behind a leather jacket.

I think it would make a huge difference for women having mastectomies if there was a way to preserve our nipples and the erectile tissue that comes with them. When it comes to being intimate, I know my husband will miss my breasts. They were a source of pleasure for him. But I will miss my nipples.

I spent some time last night on Facebook joking with a large-breasted friend about all of the things I’ll be able to do now I don’t have any. She had a great time laughing and pretending to be jealous. Here’s just a few of the things I’m looking forward to:

* Shoe string staps – haven’t worn these since I was a kid. I never could get used to the ‘visible bra’ fashion.

* No summer under boob sweat.

* Jogging. When I was at the police academy I had to wear a sports bra over a thing that felt like a wet suit to prevent tissue damage when I was running. I haven’t run since. Contrary to what TV script writers would have you believe, police very rarely chase anyone on foot.

* Not having my breasts up under my chin in ‘downward dog’. Yoga fans will get this.

* Not sitting in the audience of a concert or a play and finding my bra has become so uncomfortable that it’s stealing my attention.

* No more neck and shoulder pain – although curiously I’ve had shoulder pain since surgery. The physiotherapist says this is common with mastectomy patients, particularly previously large breasted ones, as the muscles readjust.

* No worries about what they’re going to look like as I age. No flopper’s droop. No pencil tests. Flat and free. At 52 my breasts were not going to get any better looking!

* Kayaking without having them under my arms.

* Going topless on any beach (although I probably won’t)

* Rowing without hitting them with paddles.

* Trampolining. (Well why not?)

I’m surprised by how comfortable I’m feeling about my surgery, and the absence of my breasts. Comfortable enough to joke about it, to take photos and to sit around naked from the waist up while I talk to the breast care nurse and my husband.

My body has been a warrior through all of this. My blood was amazing all through chemotherapy and I avoided any nausea. I healed quickly after both breast conserving surgeries. When I needed six weeks of radiation I had only mild redness and no blistering. What a wonderful body. How forgiving of everything I’ve put it through. How resilient. I am so grateful.

So I don’t have any embarrassment about these photos. One shows my chest just a week after surgery. You can see the two mastectomy wounds along with the original wound from my breast conserving surgery a month ago. Kylie could have incorporated this into a single wound but I preferred to go with symmetry and the least risk of tissue death. Post radiation tissue is fragile. Best not to mess with it.

This is my dolphin chest. It’s still a bit uneven and you can see the seroma on my left side, but I’m going to be fine. Kylie has left a bit more skin on the irradiated side to make sure I heal well, and to allow for the possibility of tissue dying back. One week after surgery and it’s clear that’s not going to be a problem. She tells me I can come back later for a ‘tidy up’ if I choose. We shall see.

I’m posting this photo for other women facing the same surgery. It will be okay. It will look something like this. It will be terrifying when you first get the news and you have no other choice and then it will get better. And even better.

As you can see from the other photo I’m not going to have any trouble working this look. I’m thinking ‘svelte’ thanks to my husband. And ‘athletic’.

I’m so glad I decided not to have reconstruction. I would not be so close to well, and my body really deserves to be as well as possible as soon as possible. The war is over. These are my battle scars.

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