Month: October 2016

Not Just 1 in 8

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I’ve written this post in support of Breast Cancer Network Australia (BCNA). BCNA is the peak national organisation for Australians affected by breast cancer, and consists of a network of more than 110,000 members and 300 member groups. When I was diagnosed, BCNA provided me with so much support via resources, information and understanding. It’s wonderful to have a chance to shine al light on the work BCNA does.

 

 

October is Breast Cancer Awareness month in Australia, and also the month in which I was diagnosed with breast cancer in 2012. Within a week of my surgery, I had been contacted by the BCNA who sent me one of their amazing My Journey Kits, and information about how to join their online forums. It was then I started to realise that I wasn’t alone, and that this amazing group would be with me, whenever I needed them, every step of the way.

The risk of being diagnosed with breast cancer is 1 in 8 for women in Australia. It is estimated that in 2016, 15,934 women and 150 men will be diagnosed with breast cancer. Approximately 43 women will be diagnosed with breast cancer in Australia every day this year. The statistics are frightening. Breast cancer is the most common cancer affecting Australian women. But the numbers don’t tell the story. Each of us with such a diagnosis is an individual. We are mothers, sisters, wives, daughters, friends. We are professionals, carers, sporty types, brainiacs, crafters. We speak English, other languages, do sign language. We walk, we run, we hike, we wheel. Our experience of cancer will vary, but we are tied together by a common thread: breast cancer does not discriminate. There are so many women with so many stories.  We are 1 in 8, but not just 1 in 8.

As I sat in my oncologist’s office yesterday waiting to get the results of my mammogram and ultrasound, I tried to focus on not being just 1 in 8 – I reminded myself that I am not, and have never been, just the sum of my statistics. And true to my form thus far, despite being given a 50% chance of not being alive at this point in time, I was given the all clear for another year.

This past month I was also asked to speak (in a pre-recorded video) as part of a symposium called Empowering Women Through Adversity. At first I was a bit taken aback by being asked – after all, I am just a middle-aged, part-time blogger who swears too much – and I was being asked to speak alongside the Executive Director, UN Women and the Director, National Action Plan for Women, Peace and Security, Office of the Chief of the Defence Force! I mean seriously, what the actual fuck?! And then I remembered. Four years ago I felt powerless. Stricken with fear, grief and pain. Lost and broken, crying every night after I put my four year old to bed – big, fat, anguished tears as I felt my grip on my world slipping away. But I gradually got it back, grasped the remaining shards of my life in my distinctly unfeminine man hands and stuck them back together as best I could. I reinvented the bits of my life that were beyond repair, and accepted that other bits were neither reparable nor replaceable. Without even realising it, I had empowered myself through my own adversity.

Here’s me, talking about being not just 1 in 8:

Fertility Friday: A Long Story

Fertility Friday started out as a bit of a half-baked idea, but it has grown into something very, very special. When I started the series I contacted a few women who I knew had stories to tell. One of them was Viv; I contacted her with some hesitation because I knew her story would be incredibly painful for her to relive. Viv told me she would think about it, and as the weeks passed and I didn’t hear from her, I thought that she had decided – understandably – that she wasn’t able to share her story. Then, last week, out of the blue her story landed in my inbox. It is a story of incredible love and unimaginable loss, told with humour and grace. Viv, you are an amazing, courageous woman. On behalf of everyone who reads your story, thank you.

This is going to be a long story …

After meeting my Mr Right at 34, we decided to start trying for a baby after about eight months. Given my advanced age and all we thought maybe sooner would be better, just-in-case. Well, Justin proved to be a bit of a bastard. After trying for six months without success, we decided to go and get checked out. Turns out I had a fibroid the size of a grapefruit, which wasn’t exactly helping the whole process, so out it came… Once all that was over we went back to the specialist for a review to be told that if we wanted to have a baby then IVF was our only option. BUT, we should still take contraception, just-in-case.

At that point were undecided about how we felt about IVF, and in the end we just figured that a baby wasn’t in the plan for us… so I went and bought a motorcycle. It was a Triumph America, 960cc motor, and as comfy as a lounge chair, and we made a plan to ride (my husband was a veteran motorcycle rider as well) down to Melbourne for the October 2010 Moto GP at Phillip Island. We made five-star bookings at all the wineries we fancied all the way down to Victoria, and then a week before we were due to leave, it suddenly dawned on me that my period was late. So I peed on a stick, and lo and behold, it was positive. We were so shocked that we got on our bikes and took a ride to the country for breakfast. On the way home we made a pit stop at the pharmacy and bought more pregnancy tests, as you do, just-in-case (you gotta love Justin) we got it wrong the first time. Needless to say, the motorcycle was summarily parked, the winery trips were cancelled, and I flew to Melbourne as my husband rode past fields of yellow canola.

We welcomed our little Thomas on 24 May 2011 with a kiss, and whilst the obstetrician sewed me up standing on a box (he was a little on the short side), we were told that Thomas had Down Syndrome. The nuchal scan and blood tests done at the 13 week point in the pregnancy gave us a 1 in 400 chance of Down Syndrome, but nonetheless it was still a surprise.

As Thomas blossomed we started thinking about another little one because we didn’t want Thomas to be an only child. For a while I was plagued with ‘My Sister’s Keeper’ nightmares in that I was afraid that I wanted another baby for the wrong reasons (I’m a bit of an overthinker…).  Anyway, ultimately we decided to give it a go, so back for fertility advice we went, and the Clomid merry-go-round and IUI started. So did the detailed plotting of my husband’s murder, much to my angst. After a few months of the hormonal and emotional roller coaster we decided to give it a rest for the last couple of months of the year, and lo and behold, we fell pregnant in January 2013. Back to the obstetrician we trotted and, in utter surprise, he asked ‘how did that happen??’

12 weeks came and went and all was going well until our morphology scan. We found out that our baby had a diaphragmatic hernia that meant her stomach was in her chest cavity, which was causing her heart was pushed over to the right side and to not be developing properly. This in itself wasn’t a total kidney in an esky, but after an MRI at 26 weeks we learnt that there was a bigger issue with her heart than originally thought, in that there was a break in the aorta. The ‘not a kidney in an esky’ situation suddenly changed, but we needed to wait until they could do a chest ultrasound after her delivery to know for sure. Then decisions would be made as to what to do about the hernia in her diaphragm. Regardless, we remained hopeful that the situation wasn’t as dire as all that. At 32 weeks we moved two hours from our home into Ronald McDonald House at the Mater Mother’s hospital in Brisbane, and our Bailey was delivered on 22 October 2013. Immediately, Bailey was taken to the neonatal unit and I was summarily dispatched to the ward after hearing that she was doing better than expected (oh the relief…). The following day we met with the team of specialists who told us that her aorta was intact. Oh thank God… the relief… and then they told us that there was a problem with her mitral valve, and they could do nothing to fix her. And so we had to make the decision that no parent should ever have to, and we kissed her good-bye on the morning of 25 October 2013.

Shortly after, we heard about a legendary fertility specialist by the name of Dr Warren de Ambrosis… so I called in November 2013 and burst into tears on the phone when they told me that they couldn’t fit me in until July 2014. I’m not sure whether it was out of ‘Ohmigod there’sahystericalwomanonthephone’ pity or what, but they managed to squeeze me in around March. And so the IVF journey commenced… After two egg collections, a few failed cycles and countless self-administered injections of blood thinners, growth hormones, cycle suppressants, ovulation stimulants, blood circulation pads, pills etc, we still weren’t fortunate to have any viable embryos after PGD (pre-implantation genetic testing) was carried out.

After the last round of disappointing news, sitting at the dining table with my step-niece, I told her that I thought that the most challenging thing in life was having to accept that there are some things that you just can’t change, no matter how determined you are and how much you try, and I told her what had happened. With tears pouring down both our faces she offered to donate her eggs to help us given that she didn’t want kids herself. Well, that was Thursday morning, and needless to say, we didn’t need much convincing. By lunch time Thursday I had an appointment for her to see Warren de Ambrosis on the Friday (thank you G20 summit for freeing up all the appointments!) at which time he tried to convince my niece to get her mates together for an egg donation party. We then had an appointment with Queensland Fertility Group and a counsellor the following Monday. She then flew to Melbourne on Tuesday to start a new job with a bag full of IVF drugs. Her new employer was, incidentally, a fertility endocrinologist. After a few months she decided to move back to Queensland and got a job in Brisbane, about 5km from Warren’s offices, so things became a little easier for us.

At the end of February 2015 she had her first egg collection, and we ended up with two viable embryos after another round of PGD, and managed to finally arrange a transfer of the embryo. Well, needless to say I was howling after that, all the way through the shot of drambui I had been instructed to bring along to the procedure. A week later we got the news… the embryo had taken. Wow… Warren’s referral to my obstetrician of choice was a one liner – ‘She beat the odds’.

The pregnancy progressed but was fraught with tension and concern, and a lot of bleeding in the first trimester. Second trimester I lost two-thirds of my hair, so much so that I was convinced it was all going to fall out! The morphology scan was fine, but the worry was still persisting, even though we had a scan every month.

On the morning of 17 November 2015 we dropped Thomas at kindy. My parents in-law were kind enough to come and stay in our home with our son so that we could make our way to Brisbane’s Mater Mothers’ Hospital (the Fetal Medicine Unit had been caring for us through the pregnancy and we were fortunate to have the head of FMU as our obstetrician). I cried all the way to Brisbane, I’m not sure if it was because I was leaving Thomas or if I was terrified…

By mid-afternoon on 17 November 2015 we were crying lots, and kissing and cuddling our little Shelby, which we have continued to do for nearly 11 months, along with a few ‘OMG what’s in your mouth’ statements lately. She loves her bother to distraction, along with his trucks, legos and his glasses (much to his pain and grief), and I’m pretty sure he loves her too. But the gift in the middle will always be missed, and will never be forgotten…

Fertility Friday: Trainee Mama

Today’s Fertility Friday post is from Peta, who blogs at Trainee Mama. I knew Peta a little bit through our day-job work before she had kids, but over recent years have kept track of her via her Facebook page and blog. Although she calls herself Trainee Mama, I don’t think the name fits anymore – a trainee could not possibly manage three kids under three as well as Peta does!!

My fertility journey started, not because I had the desperate burning desire to have kids, but instead on a referral from a GP after a puzzling pain which we were trying to establish the cause of. I mean, we were at that stage in our life where we’d been married for a couple of years, had done some travelling and were comfortable financially, so we sort of just assumed the natural progression would be to the next chapter in our story – kids.

Even though I hadn’t made an appointment with the specialist to get pregnant, he did ask if we were trying. At that stage we had been actively trying, but at nearly 30 years of age I of course knew about the birds and the bees but didn’t really know about how it all worked with things like ovulation. I didn’t think it was that abnormal that all of the theory says a period cycle is 28 days and mine was on average around 33 days. To be honest I really didn’t even know about the small window someone with a regular cycle has to get pregnant. Obviously, someone with a longer cycle has even less opportunity. The doctor performed an internal ultrasound and some questioning around my cycle revealed that perhaps I might need some help in getting pregnant.

Day surgery was scheduled to properly check out my reproductive organs and see if I had any ovarian cysts, but it revealed no evidence and as such, the doctor flushed my tubes just in case there was a blockage. My husband was also tested and although he had no problems with the amount of competitors in the swimming race, the quality of competition wasn’t overly fantastic.

So at 29 years of age {my doctor advised that fertility for women decreases after 25 }, the recommended plan was to trial letrozole – medication to regulate my cycle and know exactly when I was ovulating to increase chances of falling pregnant.

First month was one tablet for five days at the appropriate time in my cycle and blood tests to confirm that the medication was doing what it was supposed to be doing. The medication worked for day 14 ovulation as planned but I did not fall pregnant.

We repeated the same dose for month two and again, did not fall pregnant.

Month three the dose was doubled but my enthusiasm, ironically, halved. I was unconvinced that the medication would work and on the verge of our fourth month of treatment I was at the chemist ready to fill my script for the medication and for some reason took a pregnancy test in the toilet of the medical centre … and it was positive. I couldn’t quite believe it and still filled the script anyway.

I took a further five tests over the following hour and days and there was no denying the pregnancy.

The pregnancy was easy and after a relatively straight forward {but long} labour, we welcomed Ned into the world in August 2013. You can read his birth story here.

Fast forward a couple of years and we started trying again, medication-free and with a good deal of scepticism on my behalf. I wasn’t desperate to have another baby – we both just agreed that we didn’t want Ned be an only child. Again, after months of trying I made an appointment with a fertility specialist (a new one, since we had moved since Ned’s conception) and explained my story and that letrozole had assisted us to get pregnant with Ned.

The doctor performed an internal ultrasound that day and asked me if I’d ever heard of Polycystic Ovary Syndrome. I had heard of it but didn’t really know anything about it. The doctor and nurse explained the symptoms but the only one obvious to my scenario was the menstrual cycle length. He also mentioned something about large ‘follicles’ and at the time that sort of medical jargon just flew over my head without a thought. The doctor agreed to prescribe the medication, with the double dose from the get go.

First month, nothing.

Second month, nothing.

Third month, I forgot to take the tablets and fell pregnant naturally only to lose the baby early on.

Two months or so later we had a family holiday – a week in Perth visiting one of my best friends and then a cruise from Perth to Brisbane. About half way through the cruise I started to feel really nauseous and was not at all interested in food – or wine for that matter. I immediately knew I was pregnant and started to get excited at the prospect of having a girl as I wasn’t sick at all with Ned so surely it must be a girl, right? I took a pregnancy test at Port Douglas on one of our land days and it was confirmed. Given the previous miscarriage it was difficult to get excited so I remained kind of neutral about the situation for quite a few weeks.

The 13 week ultrasound was booked and thankfully I’d mostly gotten over the all-day nausea and inability to eat. As I lay on the bed ready to have the baby checked, the sonographer muttered ‘oh’ and immediately I knew it was twins. We’d forgotten that our first doctor mentioned the risk of multiples when ovulation drugs are used, and I suppose because Ned was a single I never even gave it a thought. You can read more about us finding out here. You see those large follicles {probably from having some form of PCOS} with any sort of stimulation {the letrozole} greatly increased the chance of multiples and well … suffice to say, in June 2016 we welcomed our daughters Frankie and Evie into the world. You can read their birth story here.

Some days I feel guilty when the madness of three young kids overwhelms me and I wonder if I’m cut out for the job when there are so many people out there desperate for the sleepless nights, the tantrums, the messy house and the baby brain. Trust me though, I really do appreciate this wonderful gift and only wish all people who wanted to become parents could.

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