Author: boobinabox

Forty-something, wife, mother, professional type. Bored stupid or stupidly bored, needing an outlet.

For Kaone

Fertility Friday has allowed me to share so many stories – beautiful, hopeful, painful touching. This one though, is a story of utter tragedy, told with such devastating honesty by a dear friend of mine about someone she loved very much. 

This is not my story. This is the story of my sister-in-law. She was two years younger than me, and our lives have unfolded, continents and cultures apart. Whilst my story is one of a happy family with three healthy, planned children, my sister-in-law’s life was different. The defining aspect of her life was inability to control her own fertility through circumstances of both her own creation, and the societal mores and laws.

At 17 years old my sister-in-law found herself pregnant. Unknown to her family, she had become involved with a man in his mid-20s who lived in the same village. No-one in the family knew of the relationship or the subsequent pregnancy. I often wonder how much she even realised what was happening to her.  It was only when she was around 5-6 months pregnant that her maternal uncle suspected something was amiss and took her to the doctor. Thankfully, she delivered a healthy baby boy two weeks after her 18th birthday, and her blood tests showed both she and the baby were HIV negative.

So at this point my sister-in-law found herself barely an adult, a single parent with no source of income and little chance for further education and employment in a society where there is no support such as a single mother’s pension, and youth unemployment is stubbornly high. Therefore single motherhood was almost a guaranteed one-way ticket to a life of poverty and struggle. Despite all of this, my sister-in-law had dodged a bullet. She was HIV free. This was no small thing in a country which at that point had the highest HIV/AIDS rate in the world, with rates in pregnant women at 52% positive in some districts. It was literally a flip a coin chance as whether you would end up with AIDS. Luckily she didn’t. Her family celebrated this blessing and tried as best they could to support the young mother.

With some self-reflection, the family decided to try and be more open with issues related to sex. This was a highly unusual thing and was a marked change. Traditionally, sex and fertility were not openly discussed. Marriage was the founding stone of families and the rate of marriage was in free-fall due to the impact of industrialisation and AIDS. In place of marriage, a culture of casual, concurrent sexual relationships has emerged which lead to the rapid spread of HIV/AIDS through communities. Further, the economic gulf between men and women (many men being employed in the relatively lucrative mining sector and women being unemployed or taking lower paid work) meant that many young woman actively sought out sugar daddies, trading sex for things like phones and rent.

Against this background, situations such as my sister-in-law’s hardly garnered sympathy. Her situation was not unusual, in fact it was frighteningly common. She struggled along best she could. She lived with her mother (her father has passed away some years ago) and eventually found some work in the retail sector. I recall sitting in my mother-in-law’s house and noting that my mother-in-law, doing the best she could to address the unspoken issues, had hung a poster on the wall warning of AIDS and how it could be prevented.

So while the situation was not ideal, she had the support of her mother and occasionally a small amount of child support from the baby’s father. Most importantly of all the child was surrounded by love.  Whilst a lack of material goods and money is poverty, the worst poverty of all is a lack of love. So although there was little else, my nephew had the love of his mother and most especially of all his grandmother. His grandmother was a sure and steady hand. His mother was in many ways still a girl and struggled to adjust emotionally to motherhood and her limited circumstances.

Then when the baby was 18 months old, my Mother-in-law passed away. With both her parents gone, no father in the picture in a formal sense and no means to support herself, the situation for my sister-in-law was potentially dire. Upon settling the estate, her siblings bequeathed her mother’s house and all its belongings to her so she and the child would at least have somewhere to live.

Over the years she was involved in an on-again, off-again relationship with the father of her child. Eventually, due to a lack of employment opportunities she left the village and moved away to the city and at times lived with the father of her child, who had also moved for similar reasons. Although she never discussed it with us directly, we suspect that theirs was a tumultuous relationship and there were allegations of domestic violence. Despite, being an immensely beautiful woman she always had a deep sadness in her eyes. After years of this difficult relationship, around five years ago she permanently split from the father of her child and moved out on her own. Her son was in primary school. They rented a room and got on with life as best they could. By Australian standards you would call their circumstances poverty, but she was doing everything possible, working and caring for her child alone. From our outside perspective, we had thought she had finally managed to get her life on an upward trajectory, and that with hard work and perseverance she would pull herself and her son onto the ladder of economic opportunity.

In 2015, through extended family, my husband and I received word that my sister-in-law was very ill. We queried what was wrong, but no-one could quite explain.  We were told she was not eating and had lost a lot of weight. What could be the matter? The possible causes ran through our minds… cancer, eating disorder, AIDS? Her illness had come of out of the blue – we had recently travelled to visit the family and my sister-in-law seemed well. How could someone become so unwell in such a short time? We were perplexed and worried.

Then, over the next couple of weeks the phone calls started coming more frequently, and at all hours of the night due to the time difference. Relatives would repeatedly tell my husband that his sister was unwell, but no-one could tell him what was wrong.  All they would say is that she was not eating. At some point she was admitted to the hospital. We tried to call the doctor on duty and request a definitive diagnosis. We could not get any clear answers. Then one cold August morning, I awoke to find my husband was no longer in our bed. I found him in the kitchen weeping. He had just received the news that his youngest sister had passed.

With no parents or husband, it was the job of my husband, her oldest brother, to arrange the funeral. My husband was in shock. She was unwell, she was not eating and now she was dead? In a state of confusion my husband flew overseas immediately to meet his other siblings and to request release of his sister’s body from the hospital. In between the tears of raw emotion and the heavy duties of organising a funeral and planning custody arrangements for our nephew, we began to piece the together what had happened to my sister-in-law.

Piecing together pieces of information whispered from relatives and friends it was revealed that my sister-in-law had once again found herself unexpectedly pregnant, this time at the age of 30. Who the father of this child was, or if it was a product of a consensual relationship is something we will never know. Faced with a crisis pregnancy, in desperation my sister-in-law had sought an abortion, in a country where  abortion is illegal in all except the rarest of circumstances. However, it is still a regular occurrence practiced by back-yard butchers and traditional medicine men.

To the best of our knowledge, in order to induce an abortion, my sister-in-law was given some sort of highly acidic substance to drink. We suspect it may have been battery acid. Not only did drinking this concoction induce abortion, it destroyed her digestive tract. For weeks after drinking it she lay on her bed bleeding, writing with pain but refusing to seek medical help. Not only was abortion illegal, it carried a seven year jail sentence. If she sought medical help she was afraid she would lose custody of her son. She was rapidly losing weight and could not eat. Eventually she confessed what had happened to her sister who took her at once to the hospital to seek assistance. It was too late. Several days after admission she died. The attending physician said her case has hopeless.  The substance that she has drunk had destroyed her internal organs and she died a slow and painful death. Stunningly the physician admitted her case was not unusual. He admitted he would see at least 200 cases of abortion related deaths in the hospital annually, a leading cause of maternal mortality, and these are just the ones he knew of.

So why do I tell this sad story? Because it has to be told. Without discussing these things and bringing this discussion into the light how will things change? Just like in Australia where “He died in unsuspicious circumstances at home” has become code for he died of suicide, “She was sick” has become code for death due to backyard abortion in my husband’s country.

When my Sister-in-law died I was angry, deeply angry. I wanted the people who did this to her to be found and prosecuted for murder. I was also angry at a society that offers so little support for women that when they find themselves in such difficult circumstances such as this, they are literally driven to gamble their lives. My sister-in-law lost her gamble. In her society abortion is such as shameful thing that no one will even say the word aloud or admit that is what happened. So women continue to die and the men who got them pregnant get off scott free. My sister and her baby paid with their lives. My nephew is an orphan.

Deep down inside I know if it weren’t for very lucky circumstances of my own birth, in a society where women have much more control over their own fertility and a social safety net to fall back on if things are hard, my sister-in-law’s story could have been mine. I have no desire to comment on the morality of abortion expect to say that it is not a choice someone would make if they had a better option, however making abortion illegal does not make it go away. It simply makes it dangerous. The best thing we can do is make society one which is centred on the welfare of mothers and children and economically empowers women.

So my dear sister-in-law, why do I tell this tale? Because I know that no one else will. I care deeply about what happened to you. I am so sorry that you went through all of this alone. I wish you could have reached out to us. If it was a matter of money I would have given you some; or would have I? Do I only say that now because I know how this ended? It’s easy to say I would have helped you with the benefit of hindsight. But if I answer the question with complete honesty the answer would have been likely yes, but it would have been tinged with judgement and a degree of resentment as I have children and bills of my own to take care of.  Maybe it was fear of that very judgement that drove her to such desperation…

So my sister-in-law, I love you and I always will and it is my commitment to you that I will always work towards to world in which values and supports women and children. If I cross paths with a woman facing a crisis pregnancy, I promise you that I will do my utmost to help her. For that will be your legacy.

Go well my dear sister-in-law. Tsamaya Sentle.

Fertility Friday: Never to Be

I’m loving that Fertility Friday is back on a roll! Today Jo tells her story about recurrent miscarriage, a pain that some of us sadly know all too well. 

Finding myself single and pregnant in my early 30’s wasn’t part of my life plan.

During my 20’s if I was asked if I would ever have kids, my standard answer was “In ten years time”, but I wasn’t really sold on the idea. Whilst I liked babies and kids, I wasn’t really sure I wanted my own. I liked my life as it was.

Fuck. A baby? I can’t have a baby. I had too many things I want to do. I’d taken a year off work to return to uni and was in the midst of planning a three month backpacking trip around Europe. Fuck. A baby? I can’t raise a child on my own. I don’t own my own house, how will I afford a baby? But what if? What if this is the only chance I get to be a parent? What if I regret not having this baby? What if?

I rang a friend in tears, and blurted out that I was pregnant. What are you going to do she asked. “Keep it” I said, surprising both her and I.

Over the next week or so I started to tell a few people, and whilst the fear remained, there was excitement too. And then I had some spotting.

After work I went to Emergency at the nearby hospital. The doctor who saw me was lovely, and reassured me that bleeding in pregnancy was common. I had blood test to check pregnancy hormone level, then later a scan. “There’s the sac, no heart beat yet, but it may be a bit early. Your dates may be wrong”. But I knew they weren’t wrong.

I was told to come back if there was any more bleeding, which there was. My experience this time at Emergency was much less pleasant, the Dr I saw was horrid as treated me as a waste of her time and told me if was having a miscarriage there was nothing that could be done about it. Blood tests showed that my pregnancy hormone levels were dropping. I cried all the way home, knowing this was the end of my one shot at parenthood.

Over time the grief became less raw, and life moved on and I met my now husband. He didn’t particularly want kids, and I was reluctant to go through the pain of miscarriage again. But or our first wedding anniversary we went to Thailand and saw all these families at the resort we stayed out. The kids were hanging out in the pool, the parents lounging by the pool, cocktails in hand, a picture of family harmony.

Through rosy eyes and beer goggles, we watched them, and decided maybe that could be us too. So we decided to give it a go. We decided that if there was no pregnancy after six months, then we would just get on with our lives.

With this self-imposed deadline, there was no time to lose. I researched tips on improving my odds of getting pregnant, and tried everything to increase the odds of getting pregnant quickly.

The first month we were incredulous that no second line appeared on the pregnancy stick. With everything timed perfectly, how could we not be pregnant? The next month was the same, and the one after, and the one after.

During the fifth month I saw my GP for a referral to a fertility specialist. Being 35 I only had to be trying to conceive for 6 months before I could see one. I left the referral in my bag unopened. Later that month the stick looked different when I wee’d on it. Was that a second line? A visit to the GP confirmed it was. We rang family and friends to let them now we were pregnant.

For the next few days I wee’d on a stick to watch the line get darker…and then it didn’t. I researched possible causes, but what I suspected was confirmed with an ultrasound and my period starting.

I booked in to see a fertility specialist. I told him about our family history of miscarriages and got sent off for blood tests, a pelvic ultra sound and a pap smear. The morning of the pap smear there was a very feint second line on a wee stick. The nurse sent me for bloods and called me later to tell me I was pregnant.

Surely I couldn’t be unlucky enough to have three miscarriages, so we set about telling family and friends our news…and then had to untell them a short time later.

Three miscarriages meant I was now eligible for the recurrent miscarriage clinic. There was a three month wait before I could get my first appointment, then another month before I could get the results from the additional testing they did. Results showed I had a clotting disorder that increased my risk of miscarriage and complications in pregnancy. Taking a daily aspirin would help thin the blood and hopefully result in a successful pregnancy.

Months later, that second line appeared again and we held our breath. A scan at six weeks showed us something we had never seen before, a heartbeat.

With that heartbeat I was now a high risk pregnancy and would require extra monitoring; weekly viability scans up until 15 wks, three major foetal scans after that, ongoing appointments with the high risk team, and then, if we made it to term, an induced labour.

The first trimester was stressful, wondering what the viability scan would show, hoping there would be a heart beating away, but mentally preparing for the worst.

There were bleeds during the pregnancy that resulted in many hospital visits and two admissions with suspected preterm labour. The goal was to get to 36 weeks, but anything from 32 weeks onwards would improve the chance of survival for the baby. 32 weeks came and went and we all sighed with relief. Now to make it to 36.

The next few weeks saw several episodes of spotting. My obstetrician made it very clear that we were looking at an early induction, and if there were any signs of labour I would need to get straight to hospital and an emergency caesarean was likely.

We made it to 36 weeks and daily foetal heart monitoring began after an episode of reduced movement. My obstetrician made the call – induction at 38 weeks. The stress of my pregnancy was getting to both of us.

This stress continued on during the labour. Gel was inserted and then we waited, and waited, and waited. Nothing happened. I went to the toilet and when I stood up a big glob a red jelly fell to the floor. I assumed it was the gel. I pressed the buzzer for the nurses, the look on their faces told me this wasn’t normal. The on call Obs came in. He suspected that I had passed a clot that had probably been the cause of bleeding through pregnancy. The plan was to send me to the ward for the night and start an IV induction the next morning. If there were any further complications then I would be having an emergency c-section.

The next morning I was hooked up to the IV bright and early. The first couple of hours not much happened. And then it started to hurt. I asked the nurse to check my cervix to see how dilated it was, she told me they wouldn’t do that until I had regular contractions for about 2 hours. My plan for a drug free birth went out the window. I wanted drugs, there was no way I could go through this pain for another two hours. The gas made me nauseous, so pethadine was offered. I knew about the risks of pethadine if the baby was born to soon after it was given, but given my contractions were not regular yet, it wouldn’t be a problem. Shortly after I was given the pethadine I felt a weird sensation. “I’ve got to push”, and not longer after our precious girl was born.

Eight months after she was born, I was pregnant again. In contrast this pregnancy was much easier. There was only one episode of bleeding early on, and a scan where they thought there was a heart abnormality, but much more textbook, just with the additional monitoring that was required. Number two was induced at 37 weeks and was born two hours after the IV induction started. Our family was complete.

Jo post

It has been 16 years since that first miscarriage, 12 since the second and third, and my children are now 10 and 8. For me, recurrent miscarriage was a harrowing experience, and while the physical side of the loss was painful, the emotional side left scars. It felt like everyone around me could get and stay pregnant without any drama, and it left me feeling bitter about having such a dysfunctional body. Having children helped ease the pain, but there will always be a piece of my heart that belongs to those babies who were never to be.

Fertility Friday: Lemons and Lemonade

In 2016, I ran a series of posts called Fertility Friday. They were guest posts from friends, readers and other bloggers  about fertility, and how families are made, lost and sometimes made anew. They were stories of hope and sadness; real stories from real women, whose strength and courage defies what we often think is humanly possible. At the time, I asked my friend Rochelle to write her story, but she was knee-deep in cancer treatment and parenting, and didn’t quite get there. Two years later, and Rochelle is no longer having treatment, but rather having her pain managed whilst she faces the progression of the disease which will inevitably kill her. I have known a lot of strong women in my life but Rochelle is next level. As her friend, I bow down to her strength, courage, honesty, resilience and humour. 

They say being a parent is the hardest job in the world. It certainly isn’t easy. For some of us, that job is made virtually impossible.

My name is Rochelle. I am 35 years old and I’m currently under the care of my local palliative team because I have metastatic, stage 4 breast cancer. I’m also a mum to two young boys.

I was 27 years old and my son Corin was 11 months old when I was first diagnosed with breast cancer. So while I was raising a baby and celebrating his first birthday and milestones such as walking and talking, I was also undergoing surgeries, chemotherapy, radiotherapy, scans, blood tests and more doctors’ appointments than imaginable.

We waded our way through that year of shit and emerged out the other side ready to get back to normal. We discussed having another baby and were told that it wasn’t an unreasonable expectation. We knew the chances of me getting pregnant again were very slim with all the cancer treatment I’d had. We were so grateful to have the child we had and if a second happened it would be amazing; if not we would be content with the one.

Surprisingly, we got pregnant within a few months with baby number two. It was an exhausting pregnancy. I had underestimated the toll all the cancer treatment had taken on my body. But we soldiered on and welcomed our second son, Beau. Life was busy, exhausting and ‘normal’. He was a baby who barely slept until about a week before his first birthday, but he was bloody cute.

When he was about 10 months old I started experiencing some unexplained chest pains. Ultrasounds and mammograms couldn’t find anything. Eventually I had an MRI. The day before Beau’s first birthday I got the results which said the cancer had returned, but this time it had adhered to my sternum which meant that the cancer had spread and while we could try to manage it, I would never be cured. This was 4 years and 9 months ago. The cancer has progressed and has spread to my bones, lungs and liver. During this time there have been more surgeries, radiotherapy, blood tests, scans, hospital stays and up until a month ago I had non-stop chemo. All of this while trying to manage a normal life for my kids.

Juggling doctors’ appointments and chemo side effects with school events and general life has been so bloody hard. We are living in rural NSW and all our family is in New Zealand. I have amazing support with a couple of friends and neighbours and they have made all the difference.

All I wanted in life was to create the loving, caring, supportive family that I never had growing up. I wanted to create confident children who knew they were loved and who felt safe, secure and wanted. I wanted to experience life with my children and see the wonder and amazement as they learn. Although I have given it my all and I’ve done an amazing job, I still feel like cancer hasn’t allowed me to reach the goals I wanted. It makes me sad that I have to sit on the sideline and watch them because I don’t have the physical capability to join in. I can’t always read stories to them because I’m too exhausted to talk. There isn’t the energy for big days out at parks or events, because although my spirit is willing, my body is just not able.

I have been asked if I feel like a normal mum. Sadly I don’t know what normal is, because cancer is my normal. I haven’t had the option to parent any other way. It breaks my heart that this is all my children know as a mother. That’s not fair on any child. But I have hope that it has set them up with more compassion for others, understanding, determination and resilience. They are amazing boys and I’m so proud of them. They are both so intelligent, clever and both have the most amazing sense of humour which will hopefully serve them well through their tough times.

Keeping my sense of humour has definitely been my saving grace. In saying that I still get hated like regular mums. I get told that they hate me, that they don’t want to be my friend, I’ve been told that they wished I was dead so they can get a nicer mum who lets them have whatever they want. That stings far worse for me than it does for regular mums, obviously. But I know they don’t mean it, I just hope they don’t remember saying it later on. They’re too young to really understand how tough things have been for all of us but I hope that as they grow they can look back with more appreciation and understanding and really be grateful at how hard it was for me and that I never gave up and I did everything I could for them.

I got to meet some important milestones like getting them both to school for their first days, and each birthday and Christmas has been an amazing achievement. We’ve had some amazing holiday experiences like going to Fiji, and my first time at the snow was with my boys. We also all have great memories of seeing our beloved All Blacks play live.

Cancer has taught me a lot. A lot about myself. I’m stronger than I ever imagined I could be. I have learned who I want to be as a person, and it is a very different person to the one I was raised and conditioned to be. I see the world through my own eyes, not the way I was taught to see it.

I have learned a lot about other people. The people who should have your back, often don’t, and it’s not about you, it’s about them. I was conditioned to tolerate a lot of shit from people because they’re family, that’s what you do. You forgive and move on. Sorry, no. Because often that same shit repeats itself. If people are causing you distress through their actions, words and treatment then you don’t have to continue that relationship because you’re ‘family’. Family still has to earn respect just like everybody else. I have had to sever a relationship that should never have even been a consideration. It was hard. I copped a lot of hate and flack for it. But I stand by my decision. It was the best decision I have ever made for myself and my mental health. And sadly, I would do it all over again if I had to.

I have learned so much about life. Given everything I’ve been through I should be bitter and miserable. I’m not. I’m still a really happy person. I enjoy spending time with my friends and trying to feel ‘normal’. That doesn’t mean I’m not angry, or disappointed. It doesn’t mean that I don’t cry about things. I am angry that this has happened to me and to my kids. I’m disappointed that I deserved better in life and should have done more with my life before I got sick. But I think we are all guilty of taking life for granted. I think we get so used to just treading water and getting through each day that we easily forget about the bigger picture. I cry. A lot. Mostly because nothing in my life will ever be better and there is nothing I can do about it. I can’t dwell on it. I have to be grateful for what I have and for every new day I’m given with my boys. I remind myself all the time that there is always someone worse off than me. It sounds cheesy but it’s true.

Every day I wish my life could have been different. If I could talk to my teenage self I would tell her that her feelings, thoughts and emotions are valid and worthy. That she is more intelligent than people give her credit for. That the steely exterior she had to create to protect herself isn’t who she truly is. That it’s ok to be herself, to go against the grain and create the life you want rather than the life everyone else wants and expects of you. Then I remind myself that it has all made me who I am. And I have to be proud of taking those lemons and making the best fucking lemonade I could.

_____________________________________________

Rochelle, my dear, dear friend, I have no doubt this was written about you:

“She made broken look beautiful
and strong look invincible.
She walked with the Universe
on her shoulders and made it
look like a pair of wings.” 

 

A Long Game

Since October last year, when I was declared five years cancer free with nil evidence of disease and discharged by my oncologist, things have been going along swimmingly. There’s been no literal swimming, as that would first require a bodily deforestation akin to the complete obliteration of the Amazonian rain forest, but there’s been lots of gently breast-stroking (singular) through life’s currently churn-free waters. My new job is proving equal parts challenging and rewarding, Dave is one week away from heading to Nepal to climb to Everest Base Camp, and Hugh is busy being almost 10 years old, loving computer games, playing piano like Liberace on crack, and teaching himself to draw cartoons.

My new office with the Charles Blackman on the wall feels a bit more lived in now I’ve been in it for a few weeks. Most days I go home with a brain that’s either fried from dealing with multiple competing priorities, or buzzing with possibilities for new projects and concepts. I’ve had some wins and made some mistakes, but given that nobody dies if I bugger something up, it’s all chalked up to experience. Given I didn’t work a single day for eight months through multiple surgeries, chemo and radiation, and then worked part-time for almost a year, I feel incredibly fortunate – and also very proud – to be sitting where I am, doing what I do.

The Everest Base Camp trek has been planned since Dave turned 50 last year – in fact it was my birthday present to him. He is going with a mate, and has steadily worked on his fitness over the past 9 months, to the point where he is trim, fit and ready to go. It is a massive physical and mental challenge, but knowing Dave as I do, I have no concerns about his ability to complete the trek. Of course altitude sickness is the big unknown that can bring Everest trekkers unstuck, and I will no doubt worry incessantly for the 16 days he is away, but I am so incredibly proud that he is going to give this his best shot.

Hugh is in year 5 and is still, for the most part, an utter joy. Most people comment on his smarts, politeness and his easy-going nature, whilst other people (specifically his mother) comment on his disorganisation, eye-rolling and distaste for vegetables. But he is a good kid with a cracking sense of humour, who is growing into the sort of person you’d genuinely like to hang out with, and that makes me incredibly happy.

He was four when I was diagnosed with breast cancer and will soon turn 10. He doesn’t talk about my illness, and to the naked eye would appear to be completely unscathed by it. Then, yesterday, his teacher sends home his English assessment – the first chapter of a fantasy novel. It’s really good – interesting, well-written and punctuated within an inch of its life (apple meet tree). I start reading it and my heart starts filling up, for I do love words and images and the power of story-telling. And then, bang, I’m hit and can’t catch my breath and suddenly need to lean against the kitchen bench as my eyes trace over and over these words:

Hugh story

Cancer is a bastard. It is insidious, inveigling, and continues to whisper its own name, over and over, into the ears of people with whom it has no business. I had forgotten that for a while, but have been roundly and soundly reminded.

It’s a long game.

A very fucking long game.

Where Am I? Where I Am.

It’s been two months since I posted here. First there was Christmas, then the fog of days that run over each other between Christmas and New Year, and then I was back to work on January 2. I have a new job, and whilst I don’t talk about my professional life in any detail here, I can say that it is crazily busy, incredibly challenging, and entirely life-affirming. I had forgotten how good I can be under pressure: thinking fast, scanning, deciding, knowing my stuff. I had also forgotten how it feels to feel unsure of myself, to have the flicker of ‘but I’m just the daughter of blue-collar workers who didn’t graduate high school and who didn’t know inside toilets existed until I visited a neighbour’s house when I was 7’ run through my mind when I am given sole responsibility for an incredibly important project. That fleeting flicker of doubt isn’t a wholly bad thing, as it makes me stop and recognise that I am who I am, because of where I came from, not in spite of it.

I am that girl from a poor family, with parents working casual jobs and a father with a gambling problem, living in a run-down rented house with an outside toilet and no power points in my bedroom which was actually a converted verandah.

I am that bright kid at the state school whose Mum spent money she didn’t have buying me project kits at the newsagent so I could do my lecturette about the Egyptians and get an A+.

I am the high schooler who got her poetry published in an actual book but whose Mum and Dad couldn’t come to the launch because they were casual workers who had to work.

I am that regional university student who had the marks to get into the fanciest of fancy sandstone city universities, but who didn’t even contemplate applying because a free pre-HECS higher education gotten whilst living at home was what I had coming to me.

I am that graduate, then postgraduate with a talent for teaching others who became an academic at that same regional university. I am that young woman earning more money than my parents could ever have imagined, working in a place they could not understand, talking and writing about things that are irrelevant when you have spent your life living on the bones of your arse.

I am that woman who worked her way up through administration and management, and who is nearing 50 and sitting in a big office with an original painting on the wall done by Charles Blackman, whose Alice in Wonderland series was the subject of one of my undergraduate university essays, written on a second-hand typewriter with an overhead light powered by an extension lead from another room.

I am also wife, mother, daughter, sister, aunt, friend, foe and she of the single remaining breast.

I am all that. Right here, where I am.

 

2017 In Review

2017 went a little something like this:

Hugh broken arm.

Cat bitten by brown snake.

Julie broken arm.

Julie arm surgery.

Mum almost dies.

Hugh second broken arm.

Dog tears ACL.

Done.

In between all of the shit and disaster, were moments of absolute delight and phenomenally good news, specifically:

Mum recovered.

I was declared five-years cancer free, taken off my hideous medication and discharged by my oncologist.

Those two things go a very long way towards redeeming 2017. I will probably still kick it in the goolies, but maybe not quite as hard.

Actually, now that I think about it, there were many other highlights. I was interviewed for the Her Words Series and I won a Queensland Writers Centre competition and had my 8 word story published on electronic billboards across Brisbane and the Gold Coast. Dave turned 50 and was surprised with the gift of a trip to Nepal to climb to Everest Base Camp in April next year. Hugh thrived at school and achieved in the top 10% in Australia in a spelling exam, and developed an interest in soccer (despite it being the cause of his second broken arm). The cat didn’t die (much to Dave’s disappointment) and my beautiful old dog Roy has almost fully recovered from his ACL repair surgery. He and Mum have struck up the most beautiful friendship since he’s been staying with her, and he has gone from being my cancer dog to her heart dog. I got to meet a couple of my lovely readers (including the fabulous Kay – hi Kay!), and spent face-to-face time with several of my online friends, as well as my fabulous real life friends. Speaking of whom, we finally achieved marriage equality in this country. Of course none of my bloody gay friends actually want to get married which sucks because to paraphrase Muriel, I wanna be a bridesmaid!

And now, here we are, just a few days before Christmas, with the end of the year looming. This is my favourite time of the year; everything that was and wasn’t is behind us, and everything that is possible is still to come. We have boy who, really, truly and quite magically, still believes in Santa, so the sense of anticipation is palpable, despite this being his 9th Christmas.

Baby Hugh Christmas

To all of you who have read my posts this year, chatted with me on Facebook and email and Instagram and Twitter, thank you. You’ve given me both an ear and a voice, and I continue to be amazed by the power of all my imaginary Internet friends.

Merry Christmas, and here’s to a 2018 where bones, hearts and pets remain intact, and family and friends remain.

Cheers.

 

 

Breaking Up is Hard to Do

On October 10, my oncologist broke up with me after five years. It wasn’t him, it wasn’t me, it was NED. Thank God for NED – full name Nil Evidence of Disease – for coming between us. As nice as my oncologist is, that relationship was going nowhere.

While I’d been sitting waiting for my appointment to see the good doctor, I’d come across the Queensland Writers Centre #8WordStory competition on Twitter. As the hashtag would suggest, the challenge was to tell a story via Twitter using only eight words. The best entries – as judged by writers such as Nick Earls and Benjamin Law – would be published on electronic billboards on major roads in Brisbane and the Gold Coast.

After my doctor told me about NED, I knew immediately what my story would be. I sat in my car in the cancer unit car park and tapped out my entry, and four weeks later I got a message telling me that from over 6,000 entries, mine had been picked for publication! Here’s my story in its electronic glory on the Inner City Bypass at Bowen Hills in Brisbane:

8wordstory

Coinciding with my final oncologist appointment, was his decision to take me off the dreaded Anastrozole. This drug provides a 25% increase in survival in the first 5 years post-diagnosis, but it has the most hideous side-effects, the key one for me in the end being osteoporosis which caused my arm to be smashed into tiny pieces after a minor fall in April this year, resulting in major surgery to turn my limb into Frankenarm.

I had hated Anastrozole with a passion for nigh-on five years, but the moment my oncologist told me I could stop taking it, I was worried. Since the day of my mastectomy in 2012, I have been having some sort of treatment for cancer. Was Anastrozole the only thing keeping it at bay? Wouldn’t it be better to keep taking it just in case? Surely I could just wear my bubble-wrap outfit forever to keep my bones in one piece.

bubble wrap

And you thought I was joking about having a bubble-wrap outfit.

But as part of his final pep talk, my oncologist told me that Anastrozole had done its job, and could do no more. ‘You do not need a security blanket, Julie.’ where his exact words. And like he had been about so many things – ‘Yes, we are giving you enough chemotherapy, not everyone gets the vomits’ – he was right. I don’t need a security blanket. I need to move on, carefully gather my fragile bones, and get the fuck on with life completely outside the hideous but reassuring grip of cancer treatment.

That doesn’t mean I will (or could) forget about cancer. Thanks to those of you who donated online, plus my ever-generous work colleagues, we raised over $800 for the National Breast Cancer Foundation, who will put this money directly into research. With donations like ours, a cure will one day be found and this blog and its tales of cancer will become like the Egyptian pyramid texts – so completely other-wordly that they will need a specialist to decipher them. Especially the sweary bits.

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.