breast cancer

Dying to Live: Metastatic Breast Cancer

Today is Metastatic Breast Cancer Awareness Day. Metastatic breast cancer is when cancer cells have spread from the original cancer site in the breast to more distant parts of the body. Terms such as advanced breast cancer, secondary breast cancer, secondary cancers, metastases and secondaries are all different ways of describing metastatic breast cancer, but they all mean the same thing.

There is no cure for metastatic breast cancer, but fundraising this October by the various breast cancer organisations will go towards much-needed research into new treatments, and a possible cure. My love and respect goes out today to those living with this bastard disease, including my beautiful friend Rochelle, who has allowed me to share her story.

I don’t talk much about my cancer. It’s something I choose not to dwell on. When I do mention things, I get private messages from people saying that they didn’t realise I was still sick, sick again, or sick at all. So as part of Breast Cancer Awareness month, and in particular with today being Metastatic Breast Cancer Awareness Day, I find it fitting that I put this out there today.

I am living with Metastatic Breast Cancer. If you’re not sure what ‘Metastatic’ is, it means my cancer has spread from the initial point to other parts of my body. This can also be referred to as secondary or advanced. Call it what you like, it’s incurable. It is terminal.

7 years ago I was diagnosed with Breast Cancer. I was a 27 year old, with an almost 1 year old. Life changed. After surgeries, chemo and radiation I was given the clear and tried to get back to ‘normal’. We had another baby. Then 4 years ago, the day before my second son’s first birthday, they told me the cancer was back. They told me it had adhered to my sternum but during surgery they tried to scrape as much of it away as they could. They gave me chemo to mop up anything left. The chances of it spreading were almost guaranteed but they believed we had caught it early enough to give me a good amount of time before it would show up anywhere else. 12 months later it was in my bones and my lungs. Now it is also in my liver.

I am 34, trying to raise my sons as normally as possible, yet I do this every day with the knowledge that our life is anything but normal. I have had more surgeries, chemo, complications, blood tests, appointments and medications than I care to recall. And I am dying. I am realistic about this, I am not in denial. It is what it is. That doesn’t mean I don’t have hope. I have hope new drugs will be found to keep me here a bit longer. I have hope that research and technology with reduce this suffering for others in the future. And I have hope that my children will grow into amazing, productive, kind, happy men.

You can help by educating yourselves, donating and raising money for research and support services for those in need. Provide physical and practical help for those fighting and their families. Make food, fold their washing, help with their kids, take them to appointments, and just spend time with them!

Not just for breast cancer but all cancers.

rochelle

#fuckcancer

If you want to help my funny, smart, fabulous (and not to mention hot, I mean c’mon have a look at her!) friend and thousands of other people in her situation, please consider making a donation to fund research.

Options for donating:

Cancer Council NSW (where Rochelle lives): https://www.cancercouncil.com.au/ways-to-donate/

My fundraising site (all funds go to metastatic breast cancer research): https://pinkribbonbreakfast.gofundraise.com.au/page/JulieShinners0

 

 

High Five!

Five years ago, I was, entirely without my permission, parachuted (minus the parachute) into Cancer Land.

Shit place to visit, nobody lives there.

Today, I got asked to leave. Unceremoniously told that my presence is no longer required.

I really, really want to write an eloquent post about how this feels (And then have it shared a million times by people who then tell me I’m an inspiration. Because if there’s one thing that’s great about having survived cancer, it’s being an inspiration to those who have won the health lottery and have been lucky enough not to get it. )

Instead, I sit here in shock. Five years ago I was told I had less than 50% chance of being alive enough to sit here in shock . But here I sit, having just seen my oncologist, to be told my results are again all clear, and as such he is discharging me from his care.

I asked him to be in a selfie with me to mark the occasion. He said he wished he’d worn a tie, and I said not to worry I’d photoshop one in.

Dr Vasey.png

I lied. Sorry Dr Vasey, I don’t know how to photoshop stuff in or out, and if I did my priority wouldn’t be your tie, it’d be reinstating your forehead and fixing my crazy, crazy eyes.

Seriously though, how good do I look as someone excitedly on the verge of tears because five years passed by and my oncologist broke up with me?

There is no cure for cancer, but for me, today, there is complete remission with NED – Nil Evidence of Disease.

That’ll do pig, that’ll do.

 

 

 

Vulnerability

Earlier this year, I was asked by the her words team if I would be part of their interview series. At the time, I really didn’t know what they wanted to talk to me about, but I knew they’d read my blog so wouldn’t expect me to talk about rainbows and unicorns, so I jumped at the chance to have a chat in front of the camera. I’ve never met a public speaking opportunity I didn’t like. Same goes for cake.

The interview took place in Melbourne, on a ridiculously hot summer’s day in a trendy inner-city warehouse apartment that made me feel like the sweating rather than glowing middle-aged suburbanite that I am. The women from her words are quite amazing –  earnest, smart, and driven to help women of all sorts to tell their stories. They also managed to film me so I don’t look sweaty, for which they get copious bonus points.

My interview took place over a couple of hours, and I think the fact that the interviewer and production staff were all incredibly young and enthusiastic made me feel more determined than ever to tell my story. As a young woman in my 20s, I didn’t have the confidence I needed to feel comfortable wanting to build my career when mostly everyone else was marrying and having children. Instead, I  built a facade of not giving a damn, whilst secretly yearning to be just like everyone else. In many ways, I was walking on a treadmill, always moving but never actually getting anywhere. I did things – bought a house, travelled a bit, built my career – but I never knew why or to what end. It has only been in the last five years that I have realised that opening up about who I am and how I feel means that I no longer yearn for anything (other than a cure for cancer, a couple more kids and a Snickers bar every now and then.)

The theme of my interview was vulnerability. Losing  four babies and then getting cancer in the space of just a few years made me incredibly vulnerable, but at the time I didn’t openly acknowledge that, and instead tried to persist with my facade. If I didn’t look at the words ‘Cancer Centre’ on the side of the building I went to for chemo, then I could go through eight months of treatment without shedding a tear. If I pretended to be happy, relieved even, to only have one child, then I could tough out conversations about my small family. If I could pretend my heart was hard, then I could get through all this unscathed. Except, of course, for all the scars.

Then I started writing this blog, growing gradually more game to reveal my feelings to the anonymity of the Internet. But the Internet is far from anonymous, especially when you post photos of yourself without your top on, but quite remarkably instead of people judging me for telling my truths, they joined in, telling me theirs, letting me know that I was far from alone. And so it began, a kind of mid-life rebirth of the non-hippy kind, with me learning one of the greatest lessons of my life – that by opening ourselves up to others, we open ourselves up to ourselves.

A couple of months after this interview was recorded, I broke my arm in six places, and learned that extreme physical pain, pain that cannot be accurately expressed in words, tears a hole in your soul and lets everything pour out. I was no longer the acquiescent patient, smiling my way through chemo like some balding nut-job. I was broken, smashed and wailing. The level of vulnerability I felt then, and at certain moments still, was acutely terrifying, and caused what the doctors call situational depression and post-traumatic anxiety. It is hard for me to write that down here, pains me to show you that new vulnerability, but bugger it, I am here tell my truth. I broke my arm and it kind of broke me, but I am being treated, being mindful, going easy, and am thankfully feeling good again.

So here is my interview with her words. The bitchy resting face sure gets a good showing, and my husband things I sound a little bit like Judith Lucy (which in my books is not a bad thing), and I’m proud as punch of myself. Oh and I did actually talk about unicorns …

Space on the Couch

The other night, my son was sitting next to me on the couch watching tv (it was I’m a Celebrity Get Me Out of Here actually, please don’t judge me). Apropro of nothing, which is the way conversations often unfold when you have a 6-year-old, he pointed to the space on the couch next to him and said ‘a toddler would fit perfectly there’. Not understanding what he meant, I said ‘whose toddler?’ and immediately his eyes filled with tears and he said ‘our toddler, if I had a brother or sister’.

Right then and there, my heart, which has had its share of bruises and battering over the years and is generally pretty hard-wearing, broke into about a thousand pieces. Before I could stop my own tears, they were there, dripping down my face. That made Hugh cry more, and try to comfort me at the same time. ‘Mummy I know the other babies died and your tummy is broken, but I still wish I could be someone’s big brother’.

It would be impossible to express just how much I wish he could be someone’s big brother too. He doesn’t know that he also could have been someone’s little brother, and how much I wish he could have been a middle child, which is actually where he sits in the order of my pregnancies.

Miscarriage is still a taboo subject in our society (and many others). We generally don’t talk about it, or if we do it’s in hushed tones as if it’s something about which we should be ashamed. If I am completely honest, shame is the right word because each time my body let go of another pregnancy, I felt like an abject failure as a woman. Everyone else could do it, sustain a pregnancy 40 weeks and take home a healthy baby, but my body seemed to specialise in rejection.

My first pregnancy was a surprise – not because we were not trying to fall pregnant, but because it happened so quickly. I was 37, but got pregnant in the second month of trying. Because I wasn’t expecting to get pregnant so easily, I had no idea that I was and it was only after an epic, emotional meltdown after a stir-fry didn’t turn out how I expected, that I did a test and broke the wonderful news to Dave. In our naiveté, we decided to tell everyone, and the day after we’d phoned his parents to tell them, I started bleeding, and after five days of agonising cramps that left me breathless (what I later realised where contractions), I had the first of a series of surgeries because whilst my body couldn’t sustain the pregnancy, it couldn’t quite get rid of it either. Completely and utterly useless.

Three months later, and I was pregnant again. I so wanted to be happy, so wanted to think it would all be ok, but that was just not possible anymore. Or was it? I settled into the idea that my body might just do it this time, when again the blood … always the blood … Another surgery, another trip home from hospital with nothing to show but a more hardened heart, and a deepening sense of what was verging on hatred for my own body.

A couple of months after that, and yet again I was pregnant. We were nothing if not fertile. This time both Dave and I only talked of the pregnancy in an almost clinical way, waiting for the seemingly inevitable failure. The blood came, very early this time when I was only six weeks along, so we trundled off to the obstetrician’s office (again) for an ultrasound (again) to confirm that the pregnancy was lost (again). But then the glorious sound, a weird echoing sound like a wet drum being beaten, and the pulsating embryo on the screen. A heartbeat, not dead, and apparently not dying! We were incredulous, fearful, maybe even a tiny bit hopeful. I continued to bleed on and off for the next seven weeks, the fear and loathing of my body growing by the day, but each and every visit to the obstetrician, with his dreaded dildo cam, showed a healthy foetus, growing strong. The bleeding stopped at 13 weeks gestation, and whilst there was some sense of relief, the inspection of the underpants for tell-tale signs, and the sense of dread and foreboding, continued right up until my beautiful, big, healthy boy was delivered alive and kicking at 38 weeks and 5 days gestation. My body, it was a wonder! An amazing, fantastic thing, a joy! It had produced the most divine creature, it was redeemed.

Once the shock and awe of having a new baby settled down, we decided to try for a sibling for our gorgeous boy. He’d never be a little brother, but he could be a big one. Getting pregnant = easy. Done. The day I returned to work from maternity leave I was already pregnant again. I was in love with my body; it had given us Hugh and now it would give us his sibling. Then, the blood. Again. All over. Again. At least this time my body seemed to have worked out how to complete the miscarriage, so no surgery. Bad luck comes in threes, right? So that’s our three things, three miscarriages, next time will be fine.

Next time? Houston, we have a problem. Getting pregnant = hard. We went from taking 1-2 cycles to fall pregnant to 12 months with no success. We moved to fertility drugs, which send me batshit crazy. I remember contemplating physically hurting Dave for leaving some clean towels unfolded. Those drugs did nothing, except make me homicidal and therefore trying to get pregnant a terrible chore, but we were determined and moved onto IVF, which involved a four-hour return drive each time we need to see the specialist. More drugs, this time hard-core, injected by Dave into my stomach multiple times each day, causing bruises as big as dinner plates all over me. Because my body is once again useless, it does not respond at all to the drugs, despite me being given the highest legal dose, and it’s all over. No more babies. Ever.

Two years later, and we had come to terms with our only child. He is a blessing; adorable, loving, bright and healthy. I’ve had counselling, I have accepted the situation and finally I don’t hate my body any more. Life is good. And then I start feeling so shit, so tired, so over everything and it is all hauntingly familiar, so I find an expired pregnancy test in the back of the cupboard and as soon as I pee on it, it’s positive. I’m 42 years old, we’ve both been sick with the flu for weeks, I have been declared infertile by the best-known specialist in the state, and I’m six weeks pregnant.

Blood tests and scans are hastily done, and although it’s early it all looks good. My body, wow, my 42-year-old body, I am amazed by it. My mind takes a while to catch up, and I lie awake at 3am every night worrying how everything will work out. I am so old! I gave away all the baby clothes! I don’t have any good names picked out! But then, gradually, I get used to the idea, and during the day Dave and I email back and forth about baby names. I think I almost have him convinced on my favourite boy’s name (Arlo), when I stand up one day in my office and feel a weird pop, like I’ve wet myself. I make my way to the toilets, where I miscarry for the fourth time. Oh, my body, you have really done me over this time. I drive myself home, silent and stony faced, and am taken to the hospital from there, wheeled through the corridors and asked by a nurse why I’m not crying.

That baby, who might have been a boy who might have been called Arlo, would have been only a month or two old when I was diagnosed with breast cancer. Or quite possibly, I would not have been diagnosed with breast cancer because I would have been breastfeeding that baby, and thought the lump was a gland or mastitis or more likely I would not even noticed the lump because I would have been too tired and too frazzled to shave my legs, let alone do a breast self-examination. Maybe losing that last baby gave a boy a chance to keep his mum, whilst taking away his last chance to be a big brother.

Hugh knows that I had other babies in my tummy but they died, and that now my tummy can’t make any more babies. He knows it, but it doesn’t mean he has to like it. He’s the only child in his class who doesn’t have a sibling, the only one who has playdates organised for him most weekends to ensure he doesn’t spend all his time with adults, the only one who calls close family friends cousins so that he feels like he has something akin to a brother and a sister. He’s the only child.

As for me and my body, well the hate is gone. It may have produced a giant cancer that nearly killed me, and I did wonder how it could betray me again, and so deeply, but having marvelled at the way it withstood all the cutting and the poisoning and radiation, and how it soldiers on despite the legacy those treatments have left behind, I cannot despise it.

One day, when my boy is old enough, I will tell him about how my body gave me a son, and then gave my son his mother, and we will both see, that despite the pain of circumstance, those are our gifts.

Treat Me, Not (Just) My Cancer

breast cancer awareness month

The final guest post for Breast Cancer Awareness Month is written by Eliza, who became a friend after I read about her in the newspaper and made contact (in a non-stalkerish kind of way!). Eliza is a biomedical research scientist who put her skills as a researcher into action in a very personal way when she was diagnosed with breast cancer at 28 years of age. This is her story.

I remember the day that my life changed forever, but not the exact date….it was a Friday afternoon in July 2002. I was home with my two-year old darling son (DS), recovering from the breast lumpectomy that I had three days prior. My darling husband (DH) came home for lunch and asked me if I’d heard from the surgeon regarding the pathology of ‘the lump’. I replied that if it were anything nasty, I would have heard and I hadn’t. He insisted that I contact the surgeon’s rooms while he was home. I did. Life changing phone call……

I’m really sorry but you have breast cancer, quite aggressive and advanced…..you require immediate surgery….removal of the entire breast and underlying muscle, all of the lymph nodes under your armpit and above the breast, you should seriously consider having your ovaries removed at the same time because your cancer is highly responsive to hormones….. you will need chemotherapy and radiation……., bone scans, CT scans……it is most likely to have spread…..’

NO THIS CAN’T BE HAPPENING…..we are planning another baby….I’m too young…

I had initially found a lump in my right breast in January 2002. I monitored the size of the lump for a little over a month to ensure that it wasn’t simply a hormonally responsive cyst or other innocuous tissue. I went to the GP, we monitored for another month, then I had an ultrasound. Nothing to worry about  – five benign (not cancer) masses that presented as fibroadenoma and a cyst ….largest ~2cm. I had no family history of breast cancer, I was 28, I’d breast fed my son for 12 months…..my only ‘risk factor’ was that I was female. Recommendation was to continue to monitor and return if anything changed.

Well, I was too busy to get a second opinion and didn’t care for a different opinion anyway – benign lumps suited me just fine. It was only at the insistence of my DH and prompting by my dear friend (and offer to mind our DS) that I had another ultrasound in June. This time the finding was ten masses, the largest ~5cm and a blood supply evident in several of the masses. Angiogenesis (the formation of blood vessels) is a hallmark of cancer. This worried me, however the breast surgeon did not seem concerned. We pretty much insisted on the lumpectomy ‘just to be sure’. The surgeon’s expert opinion was that he was 99.9% sure that it was not cancer so the lumpectomy surgery was booked for a few weeks later.

Fast forward to the Tuesday after that phone call. The breast surgeon was so sure that it was not cancer that he was going on holidays for six weeks on the Saturday so we had to see another surgeon on Monday who booked the surgery for 7am the next day. This was the first of more than ten separate surgeries over the next 18 months….

So back to the title of my story – treat me, not (just) my cancer. Breast cancer incidence is highest in women over 50 so all of the survival statistics and long-term side effects related to treatments have been largely determined using this age group. Most chemotherapy regimens and of course removal of the ovaries will lead to early menopause. Although this is an awful side effect for a woman in her 40s or 50s, it can be devastating for a younger woman and her partner who want to have children in the future.

Thankfully the landscape around fertility concerns of younger women with cancer has changed quite a bit since I was diagnosed and actually some of it has been led by one of my medical oncologists. For me, it was a struggle to get my medical team to understand my perspective. Of course I wanted to survive and I would do everything that I could to increase my chances of survival however I also wanted to explore other treatments that would eradicate the cancer AND preserve my fertility AND not impact too much on my long-term quality of life. DH convinced me to research other treatments and ensure that I was comfortable with our path forward.

Thankfully I found a very caring medical oncologist who was part of an international clinical trial that was comparing the gold standard chemo drugs for BC (infertility-causing) with a new combination of chemotherapy drugs (Carboplatin, Taxotere and Herceptin) that was less likely to cause infertility in someone my age. I enrolled in the trial. I said no to the ovary surgery. Six cycles of C and T, six months of weekly H followed by six months of H every three weeks. After 12 months of chemo, several more surgeries (including a mastectomy of my left breast), my scans were clear however the next step was radiation therapy – five days a week for five weeks.  My mastectomy surgery had left me with a thin layer of tissue covering my ribs and my research of the medical literature led me to conclude that the risks of radiation to my chest wall outweighed any benefit, that is, preventing a local recurrence of breast cancer (it was highly unlikely that I had any breast tissue remaining).

I said no to radiation therapy.

Unfortunately my medical team were not used to patients saying ‘no’ so numerous oncologists tried to convince me (and my family) to have the treatment. With the support of DH, I stuck to my decision.

The next recommended treatment was five years of Tamoxifen hormonal therapy but whilst taking this drug I would have to defer my dream of becoming pregnant. There was very little data on the safety, long-term side effects and survivorship outcomes of someone in my age group taking Tamoxifen.

So I said no to Tamoxifen……again arguments with the medical team but with the support of DH, I stuck to my decision.

Fast forward two years and my dream came true. I fell pregnant and our beautiful daughter came into the world.

I have been deemed cancer-free for 11 years now. At times it has been really scary to take the path less-followed however I feel that I am solely responsible for my decisions regarding my treatment. For me, I needed to consider the whole of me not just the fight against the cancer. I wanted to ensure that I could enjoy long-term quality of life and always, always believe that ‘long-term’ was in my future.

Eliza and her gorgeous daughter today.

Eliza and her gorgeous daughter today.

Looking Forward

Happiness is pretty simple: someone to love, something to do, something to look forward to.

I saw this posted on twitter last week, and because it came from someone who I admire, I didn’t respond with my first thought, which was  that’s bullshit. I’m a bit sycophantic like that. I didn’t respond, but I did ruminate for a long while on what it is about that quote (which, incidentally has been incorrectly attributed to about 400 different people, including Elvis Presley and Immanuel Kant) that irks me.

It’s true that those three things are pretty awesome, and I have written about many of them here. I have lots of someones to love – husband, boy, extended family, friends, my dog Roy, George Clooney, and I have plenty to do including a full-time day job, this blog, and binge-watching tv series from the US.

Having something to look forward to is where I get a bit stuck. There was a time, before cancer, where I constantly thought about the future and what my plans were. I had short-term plans for things like my boy starting school, my husband finishing his degree and me taking long service leave from my work and maybe doing some creative writing. I was also looking forward and laying plans for the longer term, for things like where Hugh would go to high school, whether we might move for Dave’s job, preferred destinations for overseas holidays, and whether when we retired we should buy a caravan and do the ginger and grey nomad thing. In the before, I was all about looking forward.

Then came cancer, and suddenly I felt that there was nothing to look forward to, absolutely fucking nothing. Initially, my feelings were based solely on fear, and then when I sat down with the medical oncologist who delivered my prognosis, my feelings about having nothing to look forward to became more solidly based in medical evidence. My chance of living five years past this diagnosis was exactly the same as my chance of dying within that five years.  Think about how many trashy movies and tv shows you’ve seen where some handsome doctor in a white coat tells the assembled family that the patient (who is usually in a coma) has a 50/50 chance of pulling through. The wife faints and the children all sob uncontrollably. Now imagine having same conversation, except in real life. The doctor isn’t wearing a white coat (although he is quite handsome) and he’s not talking about someone in a coma, he’s talking about you. He’s telling you that your chances for five-year survival are 50/50. Then try to marry that up with the idea of having something to look forward to.

I could write pages and pages about what it feels like to live under the shadow of a diagnosis like that. How you mentally make sense of 50/50 being bloody fantastic odds if you’re talking about winning the lottery, and shatteringly terrible odds if you’re talking about still being alive in 2018. How you learn to care about trivial things like what’s on tv, and the cost of petrol, and how much of a dick Christopher Pyne is when you have a stabbing pain in your ribs that has no explanation. I could write pages, but I’m not going to, because I’ve discovered that giving those fears and paranoias oxygen just makes them grow, and they are far more easily managed if they’re kept locked away in the dark.

denial

I can honestly say that these days, I don’t think too much about my diagnosis and prognosis. I obviously think a lot about it when I’m writing these blog posts, and that just serves to confirm my theory that blogging is very cheap therapy. But here I am, 23 months on from being told I have breast cancer, and I am again able to look forward with hope. It’s true that I no longer think about my retirement plans, but I have become confident again at making plans in the short-term.

One of my current short-term plans is to use this blog to host a series of guest posts during October, which in Australia is Breast Cancer Awareness Month. I was diagnosed during this month two years ago, and I have been thinking about the ways I can mark the significance. Breast cancer is still the most common cancer amongst Australian women, but every single story is different. Lumpectomies, mastectomies, axilla removals, oestrogen positive, BRCA1/2, triple negative, herceptin, radiation, reconstruction, devastation, triumph, loss, love. There are endless permutations and combinations; for every woman who gets the diagnosis there is an individual story. I’ve put the call out on the Boob in a Box Facebook page, and I’m putting it out here again. If you’re a breast cancer person, I want to share your story. You can be out and proud, or you can be anonymous. If you’re not a confident writer, I’m happy to help. All you need to do is email me at cosmocat42@hotmail.com or message me via the Facebook page.

As for the quote that started this post, well to be honest I think I found it annoying because, for me at least, it rings true. Cancer couldn’t take away my somebodies to love or my somethings to do (and in fact it gave me a big something – this blog), but it did take away many, many of the things to which I used to look forward. I’m slowly rebuilding my trust in the future; of course that trust is built on the shakiest of ground because the future is a guarantee for no-one, and particularly not for those of us in remission. I’m doing it though – planning for next month’s blog, booking a holiday to Thailand, talking about Christmas plans, thinking about how embarrassingly loudly I’ll hoot at Dave’s graduation ceremony next year, and wondering about what will happen on the new season of The Walking Dead.

walking dead meme