Diary of a mastectomy and reconstruction

“What don’t you like about your breasts,” the plastic surgeon asked.
“Apart from the fact they’re trying to kill me?”

I’m sitting in the surgeon’s office, squeezing a silicone implant as if it was a stress ball. It’s squishy with a fair bit of heft for something the size of a flattened out orange.

Nobody tells you that about implants, that they’re flat-ish. I was expecting them to be round and firm, maybe because bad boob jobs look like you’ve stuck a rockmelon on your chest. And it’s not a one-shape-fits-all situation. You can get teardrop shaped ones with different widths at the base and different projections, so they can stick out a little, a bit or a lot.

I get measured up and choose the ones that best match my natural breasts, 445CC, mid projection, wider base.
“Do you want to go smaller, bigger, have them sit differently?” he asks.
“No, I want them to look as much like mine as you can make them.”

I liked my breasts, before I found out I had cancer. After an angst ridden period in my teens when I was teased about being flat chested, I grew into my chest. They were the right size for my small frame;  big enough to know they were there, small enough that I could go braless when the outfit demanded it and I could always go a push-up bra when I needed extra oomph.

And they were symmetrical. Same size, same shape, nipples in line and both pointing in the right direction. I didn’t appreciate how rare this was until I was diagnosed and all the doctors and nurses who examined me commented on it.

I didn’t expect to be here, in this room, picking out a new chest. I’d originally had a lumpectomy, with a neat little scar that arched a few centimetres above my left nipple and felt a huge sense of relief that I didn’t need a mastectomy.

After all, I was pretty attached to my chest.

When the BRAC 2 diagnosis came in, I knew they had to go. But it still wasn’t an easy decision. Breasts are such a visible part of womanhood and I was cutting mine off. Not only would I lose all sensation but I would never be able to breastfeed. What would the new ones look like? What would they feel like? Would I be able to look at myself naked in the mirror when this was all over? Could I stand to have anyone else look at me?

Then there are the questions of what kind of reconstruction I wanted.
Contrary to popular belief, a recon isn’t the same as a boob job. You can’t simply slide an implant underneath a natural breast because you’ve taken away all the tissue in the mastectomy, so you need to find a place to put it.

One option is expanders. Think of it as reverse braces for your chest, but instead of tightening the teeth these literally expand your chest wall. You need surgery to insert the expanders, then every few weeks they’re pumped up to the desired size. It’s as painful as it sounds. Once there’s enough room for the implants, you need another surgery to swap out the expanders.

If you don’t go expanders, you need to find a way to keep the implants in place, seeing as there’s no natural breast to do the job. Lat dorsi reconstructions, using a muscle on your back, is an option and leaves you with “angel wing” scars on your back. Or you can use a mesh, made of either pig or cow membrane or synthetic materials to keep it in place.
If you don’t fancy implants, they can use fat from your stomach, inner thighs or butt to build new boobs.

I wanted to minimize surgeries and chose a mastectomy with immediate straight implant recon with mesh. I thought that I would have to fight my case, but my plastic surgeon was all for it. My radiation oncologist less so.

I had my mastectomy and recon post chemo, pre radiation. But radiation needs to be done within 12 weeks of finishing chemo and she was concerned that if I had complications, I wouldn’t be able to start on time. But my plastic surgeon went in to bat for me and the radiation onc came around.

Why not wait until after radiation? Well radiation permanently damages the skin. We’re talking serious burns and any surgery on the area, even years later, will be deemed higher risk.

Surgery after radiation increases risk of infection.
Radiation before surgery increases risk of capsular contracture. This is where scar tissue forms around the implant, making it hard and misshapen.
I had two medical opinions on this.
“It’s a less than 20 per cent chance, if I was a betting woman I’d take that bet.”
“The risk is one in five, so that’s quite high.”
I took the risk.

At my final check up, when the bruising and swelling had subsided, my surgeon was positively giddy with glee.

I didn’t get it. I pointed out everything that was wrong with them; they were hard, they weren’t the same shape, the nipples weren’t in line, they were dimpled rather than smooth and sometimes, when I moved, I could see the implant collapse in on itself.

He was very patient with me.

They were hard because there was no tissue between implant and skin, which is also why the dimples on the implant weren’t smoothed out and the animation, when it collapses, is something all implants do but is more pronounced because of the lack of tissue. Radiation had caused the left side to swell which is why it was rounder than the right and the lumpectomy meant that the nipples weren’t in line before he got to them.

“They’re never going to be the same, but you’ve had the best possible result,” he said.
“You have what everybody wants.”

Looking at other reconstructions, I know he’s right, but it still took me a long time to not hate on them.

The surgeons – breast surgeon for the mastectomy, plastic for the recon – went in from the crease under my breast instead of cutting across from my underarm, a more difficult surgery that gives a better cosmetic result because the scar is hidden.

It was a skin sparing mastectomy, which saved my nipple and further reduced scarring. I liken it to scooping out the flesh from a passionfruit, the insides are gone but the shell is mostly unscathed except for that one big cut.

They’re no longer symmetrical, but they are the same size.

If you saw me in the communal change rooms at a sample sale, you probably wouldn’t look twice. You might think boob job, because they sit higher than they should for a woman in her mid 30’s, but you wouldn’t guess it’s all just skin and silicone.

Perspective has come over time. It’s been about 18 months since my surgery and I’m OK with looking at myself naked in front of a mirror. I’m OK with my husband seeing me. I’m OK with getting changed in communal dressing rooms.

Although my new breasts are a poor substitute for the originals, at least these ones aren’t trying to kill me.

Advertisements

Medical marijuana vs Endone for pain relief

When people who are about to start chemotherapy ask me what helped me through cancer, I give them a list. Weed is at the top of it.

It’s not something I’ve written about while chronicling my treatment, but with the federal government moving to loosen restrictions on imported medical marijuana, now is a good time to have a rational discussion about its benefits.

There are groups that will cry foul at this and rage about the insidious nature of the drug, that as a nation we are all going to become addicts, but chances are if they saw someone they loved convulsing from the pain, they’d hand over that spliff.

Medical marijuana is not about getting stoned or feeling high. It’s about natural pain relief with minimal side effects.

Modern medicine is wonderful and I thank it for keeping me alive, but everything comes at a price. The Hippocratic oath may be ‘First, do no harm’ but chemotherapy is the exception that proves the rule. It’s a brutal treatment that wreaks havoc on your whole system, breaking your body in order to cure it.

The accepted way to deal with it is to prescribe opioids such as Endone or OxyContin, otherwise known as hillbilly heroin.

My pharmacist was so concerned when I went to fill out my prescription that he sat me down and talked through how to take it. This was the man that had been supplying me with all my chemo meds, but he was more worried about Endone than anything else. Two footballers had just overdosed on Oxycodone and he wanted to make sure the same thing didn’t happen to me.

Endone is prescribed to chemo patients as pain relief because it works. It’s strong enough to stand up to all the other drugs floating through your body. But it comes with nasty side effects, including potential psychotic episodes, difficulty breathing and hypotension. Did I mention the psychotic episodes?

Addiction is easy, because it kicks in almost instantaneously. Like a pillowy bed that you gently sink into, it takes the aches out of your body so that you feel like you’re floating. It’s the medical version of a lullaby, soothing you to sleep. When you wake, often in agony, it’s all too easy to grab another and repeat the process.

I stopped taking Endone when the side effects became too much to bear.

I switched to marijuana because it also offers pain relief, causes drowsiness which is blissful when the steroids I was taking for chemo gave me insomnia and as an added bonus, it stimulated my non-existent appetite.

I talked to all my doctors about it before taking it and there were no contra indications so I went ahead. It gave me all the benefits of Endone without the side effects.

If medical marijuana had been legal, it would have been easier to find, I would have known exactly what I was getting and my oncologist would have had a viable pain-management alternative to offer me.

The biggest arguments against marijuana as pain relief are that it’s illegal and potentially addictive.

If the government approves medical marijuana it will be legal. And, as someone who has taken both forms of pain relief, I can tell you that it is a lot less addictive than legal heroin.

 

Fu*k the cancer Facebook slacktivism

As a relative newbie to Facebook, I’m bemused by all the slacktivism. Share if you believe we need to cure cancer, like this page if you think society should stop animal cruelty, share if you think the best flavour at Gelato Messina is salted caramel.

It’s all pretty pointless stuff. Of course we want to cure cancer, yes animal cruelty is barbaric and who wouldn’t choose salted caramel over something as boring as peppermint choc chip? Any other answer is just crazy.

But yesterday I got angry.

You may have noticed red love hearts popping up on your Facebook feed. No comments, just the heart.

What does it all mean? Pre-valentine’s day prep? Are all your friends in love? Was there a sale on at the emoticon store?

Turns out it was for breast cancer awareness week.

Well of course it was. Everyone knows the best way to promote something is to do it via stealth.

What are the chances that the women who posted the pretty love hearts, who patted themselves on the back for doing their bit, actually went home and checked their boobs?

Forget the fucking hearts and spread information instead. How many women know how to do it? The best time of the month to do it? What to look for?

Let’s let go of the idea that only women over 40 should be checking their breasts and start them young. When we teach girls about their period, we should also teach them how to check their breasts properly so that it becomes an ingrained monthly habit.

Let’s start a conversation and get people talking.

People often ask me about my cancer and then look embarrassed, telling me I don’t have to talk about it if I don’t want to. But I do want to, because knowledge is power.

When I was diagnosed I sought out women who’d been through it, because I wanted to know as much as possible about what was coming up. I’m incredibly grateful to those who went before me for sharing their experiences and I do the same.

When people share publicly, whether online or via their celebrity it has more power because the reach is greater. It’s easier to explain my BRCA diagnosis because people always go, “Oh, that’s the Angelina Jolie gene.” If only I had more in common Ange than just a predisposition to cancer.

This week, I chatted with a woman who knew my story and wanted to share hers. She found a benign lump in her breast and although her mum had breast cancer and the BRCA gene, she didn’t know if she wanted to get tested for it. We spoke about our shared experiences of biopsies and mammograms, we discussed the pros and cons of being tested and, if the test result is positive, what to do next.

So forget the slacktivism and spread information instead.

 

 

 

Chemo, a year on

On this day last year, I had my sixth and last chemo session.

There are a few dates I won’t forget, my diagnosis day and this one.

Looking back at my day today, which was all sunshine, long walks, good food, coffee, beer and hanging out with my boys, the dude and the dog, makes me realise how much I have to be thankful for.

Last year I couldn’t have spent the day in the sun, my skin was too sensitive, I wouldn’t have had the energy to walk around Paddington, Double Bay, Darlinghurst and Rushcutter’s Bay, I had no appetite, I couldn’t drink coffee as it dehydrated my mouth and beer was out because all alcohol tasted metallic to me.

Life is so much sweeter now and as well as learning to appreciate the good things in it, I’ve also learnt a few other lessons.

Be kind to yourself
I remember at a checkup a few months after chemo where I was complaining to my oncologist that I wasn’t where I wanted to be physically and mentally. She gently explained that it can take a year to recover from chemo. It wasn’t what I wanted to hear, I expected to be back where I was pre cancer and I was frustrated with my progress, but the more I pushed the worse I felt. So I learnt to back off, give myself some slack and let my body heal at its own pace.

Be selfish
If there’s ever a time in your life when you come first, this is it. Made plans when feeling OK but then hit with a bout of nausea an hour before going out? Cancel. Want to spend the day watching back-to-back Law & Order episodes? Do it. Don’t feel guilty. I had planned to catch up on reading in between chemo sessions, but a case of chemo brain fog meant I couldn’t concentrate on anything more than a page. So it was trashy TV all the way and I was cool with that.

Celebrate small milestones
At times it felt like nothing was happening, but then I noticed that little things in my life were changing. I grinned the first time I made it up the hill without having to stop and gasp for breath. I was so proud of myself the first time I got through a whole day without having to nap. I saw myself in a new light when a stranger asked where I got my haircut and I realised I no longer looked like a chemo patient. I didn’t wake up one day and feel amazing, but I realized that these were all markers of my progress, small milestones that meant I was a step further away from the oncology ward.

Let people help you
People want to help you. Let them. Asking for help is difficult, but for most people having a loved one go through chemo is unchartered territory and they don’t know what to do. My big issue was loneliness. I felt isolated being home sick and realised that if I asked, people would happily drop in for an hour on their lunch break or take a day off to keep me company.

People are awesome
I was overwhelmed with love and support when I was diagnosed. From my girlfriend who flew interstate to see me the weekend after I broke the news to unexpected care packages from acquaintances and protective talismans from colleagues. It was as if the universe was giving me a great big hug and saying ‘You got this.’

And then there are those that aren’t
It took me a long time to realise that when someone doesn’t step up, it’s about them rather than you. Getting a big blank from someone you expected to have your back, whether it’s family or close friends, is devastating but it’s not worth the stress or energy. Some people don’t have the emotional intelligence to deal with mortality, whether it’s yours or theirs, so they ignore it or try to minimise what you’re dealing with. Fuck them, they’re not worth it.

The merry-go-round of medical appointments

It’s exhausting being sick. Not the actual feeling ill part, but the whirlwind of checkups, appointments and referrals that surround it.

You have a main doctor that has an overarching view of your care and treatment, in this case my oncologist, and then there are the other specialists who do their part. At its peak last year, I had my main oncologist, a radiation oncologist, gynaecological oncologist, GP, breast surgeon, plastic surgeon, genetic counsellor, IVF specialist, lymphoedema physio and exercise physiologist.

And they were just the ones I had to see regularly.  I’ve lost count of the one-off appointments, blood tests, X-rays and bandage changes that I also had to fit in.

It drains you, physically, mentally and financially. I was reminded of it this week when I had to schedule a GP referral, blood test and ultrasound before attending a specialist appointment next week. Fitting it all in during a working week took a bit of juggling and made me thankful I have a flexible working arrangement.

Going from doctor to specialist, blood test to X-ray, appointment to appointment is a full time job. It’s a  whirlwind of phone calls, confirmation texts and those little cards clogging up your wallet, reminding you of the next appointment.

Those cards are notoriously easy to lose and when you add in a case of chemo brain, a forgetfulness akin to baby brain, you have no chance of remembering where you need to be.I found the easiest way to keep track of it all was writing it down in a proper, old-fashioned diary. A small pocket one which fit easily in my handbag and displayed seven days over two pages I could easily see how much I had on every week.

The first week I opened that diary to see no appointments, I cried. It was such a relief. I didn’t realise how big the weight of having to be somewhere every day, at a certain time, regardless of how I felt, was until I didn’t have to do it anymore.

So much about cancer treatment is automatic. You just keep going because you have to. It’s not as if you can skip a scheduled radiation treatment because you really don’t feel like getting off the couch that morning.

Radiation was a big one, every day Monday to Friday for six weeks. Luckily it was always around the same time every morning so I could plan my day around it, but by week four the fatigue was kicking in and it would take me longer and longer to walk the four blocks to the hospital. Yes walk. I know that compared to others I was fortunate to be able to walk to the hospital and most of my appointments rather than have to drive and worry about parking or take public transport, but it was still exhausting.

When I finished radiation in March, I was thrilled that I no longer had a daily medical commitment. At the end of the six weeks, I met with my radiation oncologist I asked her when I had to see her again, thinking it would be annually at least. She told me I didn’t. She’d done her part, I responded well to treatment and fingers crossed we never had to see each other again. I whooped. Loudly. Then I felt bad, apologising that it wasn’t because I didn’t like her, but it felt good to cross a doctor off my list. She laughed, she got it.

Now, my medical list has shortened significantly. I see my main oncologist every three months and my gynaecological oncologist, breast surgeon and plastic surgeon annually. I know that it’s a long way off, and that cancer is treated rather than cured, but eventually I hope to step off the merry-go-round completely.

Cancer is a chronic disease

One of the major mindfucks when dealing with cancer is that it doesn’t have an end point. Even being classified cancer free or in remission doesn’t mean you have the all clear. It’s a virus – one that affects other parts of your life, your health and your mental wellbeing – that you can never shake off, no matter how hard you want to believe Taylor Swift.

If you break a leg, they reset it, fix it and you’re on your way. Done. Back to your life before the accident. You don’t have to take that broken leg into account two years later when deciding on future medications, risks, contraindications and complications.

It’s been five months since I’ve finished active treatment and I’m looking a lot more like me. Hair, brows and lashes are back, not quite the same but close enough. Cheekbones, once dormant under that puffy orb which replaced my face while I was on steroids, have popped back up so my face finally has definition again. I’ve lost those extra chemo kilos that were stubbornly hanging round.

I’m looking, and feeling, good and everyone is cheerfully asking me whether it’s all over now. They’re confident enough in my appearance to ask and they can’t hide the expectant look on their faces, a sweet indication that they’re rooting for me, and yet I can’t give them the good news they want to hear. So I just tell them that the heavy lifting is over and now I’m on medication for the next few years.

What I don’t tell them is that by a few, I mean five to ten years. That while hormone therapy will theoretically increase my chances of long term survival from breast cancer it also comes with nasty side effects such as an increased risk of uterine cancer and sometimes debilitating menopausal symptoms.

I could accept this a lot better if I knew there was a guarantee, a final full-stop at the end of it all. Case closed. But there are no absolutes with cancer. Even following my doctor’s recommendations, my long term survival rate is only in the high 80’s. When she ran my numbers, which looked at my type, grade and stage of cancer and how the combination of chemo, mastectomy, radiation and hormone therapy would theoretically increase my lifespan, I was expecting to be high 90’s. After all, I did everything they told me to do. So that was a startling blow.

And now, my circumstances have changed and we’re discussing adding a new medication to the mix. One that will shut off my endocrine system, plunging me into the depths of a chemical menopause and all that entails, including depression, hot flushes, insomnia and osteoporosis. Overnight I would have the body of a 60 year old. My oncologist very patiently and methodically pointed out new research that showed zoladex in conjunction with tamoxifen had a 35 per cent benefit in two groups; women under 35 with early stage breast cancer and women who had an advanced stage tumour with lymph node involvement. I belong to both of those groups. But then she went on to explain the relative benefit, which is this benefit divided by my projected survival rate, was only three per cent.

So now I have to make a choice, but even with all this information I’m still flying blind. For all the research, studies and data out there, there’s nothing to guarantee the result I want.

But the biggest mindfuck? I could stop every one of my medications, rid myself of the accompanying side effects and remain cancer free until I die of old age. I could also take the scary drugs, remove my ovaries, potentially give up my chance of conceiving and it could still come back.

 

My Cancerversary

It’s been a year since I was diagnosed with breast cancer.

I realised my cancer anniversary was coming up last week, wondered if I should do something to commemorate it and then promptly forgot about it until this morning. It was two days ago and it slipped past as if Thursday was just a normal day. I woke up, walked the dog, worked, worked out and had dinner with The Boy at home like it was an ordinary day.

Which I find strange, because the date June 2 is burned into my brain. When people asked me when I was diagnosed I don’t hesitate on the number even though I have to stop for a second when someone asks me my age.

So I assumed I’d wake up on Thursday and I’d feel something.

I guess it’s not like a birthday where you anticipate it. Birthday’s are joyous celebrations full of presents, booze, fabulous dinners and more presents. I want to celebrate birthdays. But cancer anniversaries aren’t necessarily positive milestones. They’re often commiserated rather than celebrated.

Yet  I need to acknowledge it because it’s been a fucker of a year and I choose to celebrate where I am right now. The ground I’m standing on is not as solid as it was before cancer ripped through my life, but it’s safer than it was a year ago.

My diagnosis felt like the tornado that swept up Dorothy and Toto and transported them to a strange place where everything was terrifyingly unfamiliar and they had not choice but to set off on a course that was not of their choosing in order to get back home.

I didn’t want to do any of it. My yellow brick road was fraught with pain, danger and loss. When I thought about what lay ahead of me it all seemed too hard, too scary, too much.

And yet, here I am. Which is definitely something to celebrate.