Bad Bubbles


Have you ever had one of those frustrating dreams where you can’t interact with the world around you? Your voice is drowned out or muffled; your frantic waving is invisible. Riding on the cancer rollercoaster is freakishly similar. But in this reality it is like living in a bubble or a snow globe. People can call in, visit and pass by your wee sphere but the bubble is always around you, sometimes it may burst with the distraction of normal life or with spikes of laughter and love but it reforms just as quickly as it pops.

It has a shadow that lingers always.

For me the majority of my time is spent in my bubble, in fact I’m not sure I really made it out of the brain tumour bubble, Bubble V1.0! 

It’s made of nausea and pain, exhaustion and fatigue. Thinking too much of the future, or not enough; juggling the medications and appointments, whirling thoughts about if I have given Ruby the guidance she will need if she has to go on without a mum, knowing this storm is nowhere near finished...  hospital rooms, blood tests, surgery to still come, fried veins and pain, always pain.

That’s what my bubble is made of.


But bubbles have a trick to them. Eventually they do burst, a bubble cannot last forever. Even the bestest bubbles that seem so enduring and tough have a terminus.

It would be easy for us to let our bubbles suffocate us, to recoil and withdraw into our misery would be a pretty easy thing to do and there is no shame in hunkering down for a bit. Just a bit though.

These last five days have been particularly bubbly for me. I’d say it’s the most bubbly I have been! In the most non-traditionally bubbly way if you get my gist. 

I have been a miserable, grumpy cow, that’s okay because we are allowed to be that way sometimes.  I’ve let my bubble walls get fairly thick but there have been wee pin pricks of light get through. It’s been a painful five days, my arm is quickly turning into an ugly version of the Milky Way and food and liquid simply do not want to stay where they should.

If you think just a quick text or message is futile or not enough you’d be wrong. The smallest things can pop a bad bubble for a bit.

Please DO share pictures and stories from life outside the sphere, these things make me smile. I love to know there is a normalcy waiting. DON’T hesitate to share your day with me, tell me about the crappy day you had at work or your snotty cold. I want to hear that your kid lost the plot and impersonated that creepy girl from The Exorcist!


Please remember my illness does NOT invalidate what you are going through or the importance of it. My cancer does not make me the automatic winner in a weird game of “who has it the shittest”! All of our experiences matter and are relative.

To those gorgeous souls I know who are stuck in their own bubble at the moment, medical or other please know my bubble is bouncing about too and you are not alone.

I can see your bubble. 

Live every moment

"I used to think time was a thief. But you give before you take. Time is a gift. Every minute. Every Second."

 - Alice Kingsliegh from Alice through the Looking Glass.

This quote really resonated with me the other day when watching the film for the second time (the first time thinking I was perfectly healthy and had decades left in my life). It made me really think about my appreciation of the time I have and the people and opportunities I have or have had in my life.

About a month ago I took another blow to my already "not great" diagnosis. My treatment plan is out the window and lots of question marks started flying around my medical teams. What did I do in response to this news? Insisted we had dinner by the waterfront and the next morning I went to the beach. Sitting on the beach I was happy. Not a feeling many people might expect me to feel the day after that news but I felt so fortunate to be able to take myself to the beach, feel the sun shining down to warm my skin and look out at one of the most beautiful views I've ever seen in the world. Not everyone even has that fortune in their life and for that I felt grateful.


This wasn't the only gift I gave myself that day; I decided to go for a walk. A body that theoretically is failing at it's job (although I prefer to view it as a perfectly healthy body with some imposters) was rewarded with exercise because it makes me feel good. As I walked up the hill I spotted a pohutakawa in bloom and stopped in my tracks to appreciate it's beauty. I probably looked completely insane to anyone around, some crazy, bald girl staring in awe at a tree. But in that moment my body felt full of happiness - a happiness I wouldn't have been rewarded with if I hadn't got myself out of bed to carry on with my life.



These are just the some of the beauties I am fortunate to have in my life. I think about my baby nephew dribbling on me when I'm holding him. My caring sister-in-law apologises and rushes to wipe it up but I simply think how lucky I am to have this little man in my life and to get to be a part of his, for however long that ends up being. 

In response to the question, "How are you?", my mother often used to reply "I got up this morning and my feet touched the ground". It's something I have taken on board during this time. Nothing could be truer than feeling grateful for waking up and getting to enjoy even the most simple things in life, a nudge from one of my dogs, the beauty of a spiderweb so carefully crafted, the scent of a rose in full bloom, the sound of a tui's call as I sit here and write this...

This diagnosis, though one I would prefer not to have and one I would never wish on anyone, has made me truly realise all the beautiful people and moments I have in my life and has given me inspiration to try to share as much positivity as possible throughout the world while I'm still in it. 

Love every moment you have - It's a gift. Every minute. Every second. 


Meridee Walter

My Dear Boobs project


Firstly, thank you to the Whole Lotta Life Foundation for having me write a guest blog. I was recently extremely privileged to attend a five-day retreat which was organised and funded by this visionary charity. From it I have made precious new lifelong connections, with courageous and like-minded women. It was also my first experience of retreating, and now I get it! Where have I been? I am planning many, many more for sure!

So, when I am not retreating, enjoying the ebb and flow of family life with two small children, and getting frustrated with the ebb and flow of my post cancer recovery, I am collecting letters. I currently have 75 Dear Boobs letters in my inbox from women affected by breast cancer, from all over the world. Let me explain a little more.  

I’m Emily. Last year, at the age of 36, I was diagnosed with stage 3 breast cancer. Nope, there was no family history. I’d never been admitted to hospital before. I am a healthcare professional. A runner. A vegetarian, and a wife and mummy of two breastfed little ones. I’ve done everything right haven’t I? A classic case of “why me?”. It’s important to know, to really know, cancer doesn’t discriminate and anyway, I know exactly “why me”.

The 11 months I spent in intense treatment has taught me a lot (unavoidable cliché sorry), and it continues teaching me every single day. It has also inspired my exciting new project, The Dear Boobs Project; my “why me”.


Launched on the last day of my official treatment, Dear Boobs is a vision to publish a collection of inspiring, intimate, courageous, and sometimes hilarious letters to breasts. Written by women from all walks of life, who have had breast altering surgery due to breast cancer or a BRCA mutation. Be it one boob, two boobs or part of one, my dream is that women will read the book of Dear Boobs letters and feel supported to know their unique relationship with their wobbly womanly body parts really does matter. I hope to create, and then fund (hmmm still working on that one) at least 1000 bold and beautiful Dear Boobs books to be shared around clinics and waiting rooms where women, just like me, can pick up and feel inspired by the incredible boob wisdom. I believe it really can make a difference.

So, just over 100 days in, I’m already into the real publishing nitty gritty. Things are moving fast. Design concepts, editing, sponsorship, media releases…. it’s full time work this ‘recuperation after cancer’ thing, but I love it. It’s a win, win, win, you see. Authors heal a little by writing, the readers heal a little by reading, AND, I find a perfect outlet for the energy I am gradually mustering. It also provides the perfect opportunity for me to harness my creative (and much neglected) side, and give back to women all over the world the essential boob wisdom that I was missing on my journey.

So, if you are interested in my project, and have a Dear Boobs, boobies, breasts, knockers, tatas, lefty, righty, bosoms, mammary glands, hooters, jugs letter in your head, or know someone who might have one residing in them, please share The Dear Boobs Project. Then brace yourself for the finished book to appear in clinics and waiting rooms and bookshelves very soon.  


For more information please feel free to email me on

Finding my way: Creating a meaningful career after cancer


Everyone has a different story to tell.  This is my story.

I’m Rebecca, I’m 48 and I’m a Paramedical & Cosmetic Tattoo Artist.  I am also a wife and mother. We have 2 children, Ruby 16 and Jake 13.  I had a career in advertising before I was a mother, but painting and drawing have been a lifelong passion of mine.  So while raising the children I went back to study Fine Art at Massey University. I graduated in 2014 with a Bachelor of Fine Arts with First Class Honours.

In March 2015 I went to my GP after finding a lump in my breast.  Small and hard to decipher it took me a couple of months to figure out if it was really there.  After scans and biopsies I was told I had a Grade 3 tumour.  I heard the words “ductal carcinoma”, “lumpectomy” – I had thought if someone told you, “You have cancer”, you would burst into tears.  I didn’t.  Not straight away. I remember asking the doctor if he was joking? He wasn’t!  I remember asking if someone could please hurry up and crack a joke so we could all laugh at what I had just heard.  But nobody was laughing and it wasn’t a joke. Tears did come. I felt them well and spill over, down my face, into my lap. I remember being more concerned about my son outside in the waiting room and my daughter at the school gate waiting to be collected than this shocking news.  This was the start of a long marathon, one I had not and could not have prepared for. Another biopsy would reveal I also had Pagets disease in the nipple of that same breast.  I thought a disfigured breast through lumpectomy was bad enough, now I wasn’t even going to have a breast!

With aggressive tumours, I was sped into 6 months of neo-adjuvant chemotherapy and being HER 2 positive, it was followed by 12 months of Herceptin. Chemo was long and hard. Ruby and Jake were 13 and 11 then, I was 45.  They were old enough to understand, so the best we could do was tell them we would always be honest with them. I lost all my hair. To this day I am traumatised by that.  I am traumatised by a lot of the things that happened in those 2 years. It was a personal choice and a difficult decision to make but I opted to have a double mastectomy.  After chemo I had 3 reconstructive surgeries, -  in January, April and July of last year.  

What had begun as a negative, I decided to turn into a positive. During my 3 reconstructive surgeries, I re-trained and set up a new business in Paramedical Micropigmentation. I chose to grab my life back even if it meant training while I was recovering from surgeries and still undergoing treatment.  At the time it seemed simple.  I had lost a nipple so I wanted to find out how to get one back.  If not for myself, then for others. I’m an artist, I thought I can do that.  Not everyone wants a nipple tattoo, but it’s what set everything in motion for me. Whether you choose no reconstruction, or have reconstructed breasts with or without nipples, to me however cancer leaves us, the female form remains strong and beautiful, the marks we are left with from the surgeon’s knife are testament to the battles we have fought.

I trained here and in Australia and am now a Master Technician having trained in all areas of Micropigmentation. It’s an advanced and sophisticated form of tattooing, quite different to body art tattooing.  I’m now fully qualified in advanced paramedical skin/scar/burn camouflage, 3D nipple/areola breast reconstruction, cosmetic enhancements as well as scalp aesthetics for hair loss. 2016 was busy!


Empathy comes from many things, for me deeper empathy arose, because I learned what it is like to lose all my hair; I found out what it’s like to endure months of gruelling treatment and be made dangerously ill from the drugs that will ultimately save your life; I wish I didn’t but I also know what it’s like to stare my own mortality in the face.   I think some of these things make you think more deeply about what others have to face in their lives and you look for new meaning in your own life.  With my artistic background and an encounter with a life threatening disease, combined with a new technical skill, I can now help others overcome what accident, disease and illness inflict upon them.  I did not think I would find it this way, but I have found something in life that is meaningful and something that can literally be life-changing for others.

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WLL Foundation Retreat - Time away for just me!

We all know when the woman is out of the house – NOTHING works. We look after the kids, the household, the grandparents, do the washing, the grocery shopping, the gardening, the out of school activities, the cooking – and often we also work and make sure the lives of our partner isn’t too hard, as we keep EVERYTHING under control! Oh I almost forgot -  we  also manage all our appointments at the hospital, radiation centre, GPs, run to the pharmacy, blood test, physio and councillors – because besides all this – we have cancer.

This year, in early September, 12 women stepped outside of their comfort zone – leaving the husband, kids, grandparents and pets at home – and taking the risk of the company going under whilst we are not around to manage the day to day tasks, because we read about this retreat – this retreat which sounds a bit scary, a bit “not me” and a bit too "out there."

5 days with woman we don’t know, in a place where we have never been, doing things we’ve never done – and all this JUST for ourselves. What a risk to take!

But 12 of us were brave enough and I was one of them.

 On our way!

On our way!

Luckily I knew 2 of the ladies travelling already, we had all convinced each other that this would be a good thing, after this year of treatment, exhaustion, worries, anxiety and stress. Why shouldn’t we try this and give us some “time out” to look after ourselves? For me personally the meditation, yoga and spa didn’t sound too interesting but I figured it was worth a try to see if my mind and body could spend some time with each other and get to know each other better.

We arrived late at the Brackenridge Retreat & Spa on the Wednesday night. We missed our flight from Auckland, but eventually made our way to Wellington, and from there caught caught a taxi and train to Featherston, where we got picked up – just in time for dinner at the retreat. What a start! But kind of cool as well – first train ride for some of us, lots of laughter and fun on the way and the excitement started to build. They will be fine at home…they will be just fine!

At the first dinner we got to know each other a little bit. Every single woman here had an open mind, an interesting personality (gosh, we were all soo different!), and a crazy story to tell. I have to say we really didn’t share a lot – but what we shared was the understanding for each other (you know – just people who “get it”), the will to LIVE and an open heart to make friends, help and support each other – and that was the biggest thing!

We got split into different houses, a good mixture of age, diagnose and home town…it worked out perfectly! The houses were awesome, with fire places and comfy couches in the lounge, 2 bedrooms, two bathrooms (the shower had the most amazing pressure EVER – full body massage every morning!) and a kitchen, with coffee, tea and breakfast for self catering. Great set up – a great place to feel at home for a few days.

 Brackenridge Resort & Spa Cabins

Brackenridge Resort & Spa Cabins

The first day started with Yoga and Mindfulness – not my thing – but so much easier to concentrate on yourself when you are away from home. Are you a chest breather, a belly breather or even a reversed breather?? Well, here was the time to find out and think about it – and to practise if you always got it wrong…I know right? A fundamental thing like breathing, which you did wrong all your life, which may have helped causing all this anxiety and stress? Interesting that it needs a get away from home to find out that those things matter, and that they are important – for no one else – just you.

 Yoga with Kristin

Yoga with Kristin

We also met Rebecca Fisher who shared her incredible journey of breast cancer with us and told us her story of becoming a Paramedical & Cosmetic Tattoo Artist.

After lunch we headed to the Spa to have a treatment – eye trio (lashes and brows) as well as a manicure. The waiting time was well spent in the 40 degree Spa pool or doing some laps in the salt water pool (I have to admit, most of us wanted more the hot water spa pool 😉). The day flew by with lots of chatter, great food (a big thumbs up for Providore, the Caterer who fed us the entire time) and lots of insights about ourselves. The nights are windy and cold – but luckily we have fires, warm blankets and peppermint tea.

The next day we travelled to Cape Palliser to see the seal colony and to climb the 251 stairs to the Lighthouse. What an amazing challenge for some of us. Bone pain, fear of altitude, lack of fitness – nothing could stop us – we became a team! We were friends now who encouraged and helped each other and knew that we could do ANYTHING – together! After conquering the top, we were proud to take pictures of our achievement, almost blown away from the strong winds up here – but we made it!! 251 little stairs, steep and challenging, step by step – but we made our way to the top to celebrate success.

 Cape Palliser

Cape Palliser

 At the top!

At the top!

On the way back we got to take some selfies with lazy, fat seals laying on the side of the road, one even blocking the road, until we arrived in Greytown to have lunch and a little browse through the shops – the “Lolly Jar” and the “Chocolate House?” were probably the most popular shops to visit – but hey, we really deserved a treat after this amazing hike this morning.  After another yoga class and delicious dinner we finished another day at Brackenridge

Day 4 in the retreat was all about the Art Therapy in the afternoon. We got told, that this would be something life changing – so everyone was a bit nervous. After Yoga and Mindfulness (yes, I think I definitely got better at it!) we met the beautiful Rei, who introduced us to her style of Art Therapy. “Get around and take some pictures with your phone” was the only rule we had. So we went wild and took pictures – branches, candles, leaves, grass, flowers – whatever we could find. Then we had to choose 3 of those images and create art with them. We got all sorts of colours, feathers, glitter, crayons, paper, stickers – and just got to go with the flow – "Don’t think about the end result, just do what you feel like…"

And then after an hour – we looked at it. It was very surprising to look around and see what we had created. Our inner self was talking to us – and we had created a beautiful story, which we were able to share with our new friends. Some smiles, tears, laughter – lots of applause and lots of courage was involved in the presentation of our art. A new experience – another eye opener – a new experience about myself!

That night, realising it was our final dinner together, we definitely felt a bit sad. Tomorrow we would go home – back to our families, friends, pets, houses, gardens, work…

For the whole 5 days – I didn’t think about any of it …we were just here – in the moment, with our new like-minded friends, who we got to know so well in such a short time. All that mattered was US! An incredible time, which we all share and probably no one will understand. Our little “secret escape” which I still sometimes go to, when the stress is catching up with me again. I am so glad then I went, that I added this experience to my life and created more space for myself in my life.

I hope that we will all see each other again, for another time out, for another escape into our own little world – now knowing, that life didn’t collapse when we left home - and how important it is to look after ourselves.

 September Retreat Group 2017

September Retreat Group 2017

Thanks Kristin and Hannah for organising – thanks Rei and Rebecca for some great insights! I am very happy that I had the privilege to meet you!

Palliative care and questions around dying.

I began writing this post in May. I have been trying, for months it seems, to compose a piece that I would be proud of. An honest piece, grammatically correct, maybe containing the odd joke or two. I love words, I love reading; but the more I read, whether it be an article, an essay, a book, the more I realise that I am a reader not a writer. Take the length of that previous sentence as evidence. However today, for some reason, I do not seem to care as much. I have reached a point where mediocre is acceptable. Not a great catchphrase for the kids, but I have found that if I don’t have mediocre, I don’t have anything. So today, I am going to type, and not edit until the end. I am going to admit that a vivid dream is still not reality.

The first anniversary of my terminal status has passed. There were no celebrations. For over a year I’ve been under palliative care. This is not as frightening as it sounds. My hospice nurse calls me once a fortnight. If I have a fresh complaint, she may visit me at home. The Wellington haematology team manage my disease, the Nelson Tasman Hospice team manage my symptoms. In May, a routine hospice call revealed an ulcerous insomniac tearing at her skin, rather than the charming patient they were accustomed to. My symptoms had overcome me. Although death remained distant, I was admitted into the hospice unit for symptom management.  

For the last year, I have tiptoed past the hospice inpatient rooms en route to my counselling sessions. I never once asked what the rooms were for. I had always assumed the worst. It turns out that the majority of hospice rooms are for symptom management. They are not the introductory tombs that I had envisioned. I was admitted into one of those daunting white rooms, for monitoring and medication management. My body was infuriating me; I did not even protest my admission. If I was permitted to lie in bed all day, pretending to read, then I was quite happy. Sometimes it is nice not to have any pressures. The room was comfortable, although on the wall at the foot of the bed, a giant clock hung. It seemed to mock me with each second. Tick; “That’s right, while you’re lying in bed, time continues, and you have little time left.” Tock. Unfortunately, I am no Lola. I was forced to accept the taunts of time.

The symptom management wasn’t a great success. I continue to itch, scratch, and bleed, although the itch seems less intense, and the scratch more habitual. I try desperately to break the itch-scratch cycle, but just don’t know how. Hospice introduced me to Pinetarsol and menthol moisturising cream, which I coat myself in each morning. I imagine I smell like a Xmas tree with a cold. The Pinetarsol seems to be beneficial; an itch reduction rather than a cure, but at this stage a reduction is all that I am after. And if anyone dares to ask if I have tried antihistamines, I will wallop them with all my wheezy strength. I have had a chronic itch for 8 months, of course I have tried antihistamines. Don’t worry, I don’t actually wallop them. I give them a biology lecture. You would be surprised at the number of people who seem to know what is best for my health.

Hospice don’t merely manage symptoms. They manage dying. And to provide personalised care, they need to know one’s thoughts on death. A year ago I was handed a few pages to fill out. Questions to get me thinking about what I would want if I were unable to communicate. I thought they would be simple enough, you know, questions about organ donation (donate everything), religious rites (don’t bother), and my preference of burial or cremation (cremation, ashes scattered.) See, I had the answers already. This questionnaire wouldn’t take ten minutes. One year on and I am yet to complete my advanced care plan.

The questions are really difficult. Not only are you forced to imagine an absent future, a future where you are, if lucky, a mere memory; you are forced to imagine a future where you exist as an unconscious mass. Both scenarios induce painful tears, so I tend to avoid these thought experiments. But the questions keep coming.  Where would you like to die? Who would you like at your death? Would you prefer to die alone? Would you prefer to be comfortable or lucid? Is length of life or quality of life more important to you? It seems that my answers to these questions are further questions. I mean, when are you officially dead? Is it when your brain stops, or when your heart stops? How long are we talking in terms of length of life? Is it months, or is it days? I have been told that coma patients are able to hear. Would I be content with listening?   

And then there is mood. Some days, I’d like to invite the Nelson populace for a bedside visit. Other days, I decree I must be left alone. There are scribbles and arrows and more scribbles as my relationships and philosophies change. These changes seem to happen weekly. I guess I am no good at planning. And besides, it is more important to those around me. It is more important that their wishes are met. Because I will be dead, and nothing will matter anymore to me. But I must add that I do not want a spectacle; no state funeral, or parade, or public holiday; deep down I am a humble being.

Advanced care planning is encouraged for healthy individuals too. In case of future illness, or perhaps an accident. The questions on organ donation, I feel, are vital to discuss. New Zealand does not have an organ donor register. The government were petitioned last year to install one, but they declined to do so. They recommended a culture change, more discussion on the issue, rather than funding. Medical teams continue to rely on a driver license to gauge one’s opinions on organ donation. The donor status is not legally binding, although it may soon become so. The family can still say no if they are uncertain of your wishes. In France, they have an opt out donor register, rather than an opt in. It saves lives.

I think the advance care plan guys are right. I think discussion about death is important. I find I don’t really discuss death, even though it is always at the edge of my mind; a dark haze drifting in from the outer regions, grounding all flights. It is difficult to know who is comfortable talking about it. Death tends to be a conversation killer. Perhaps not everyone needs to picture the exact moment of their demise, but a little discussion on wishes, of your body, of your funeral, can really be helpful. So I ought to complete those forms.

By Liv Stocker

Kintsugi: Life and Healing after Cancer

I had just turned 37 and my baby had not long stopped breastfeeding when a doctor found cancer deep in my breast.

A few weeks later, a team of doctors and nurses worked for 11 hours to first take away my cancer and then to fix what was left behind.  

But in the weeks and months that followed my diagnosis, I found myself in a body I didn’t really know or recognise, and that I didn’t trust. I had to get to know myself all over again. 

In the process of coming to terms with the new me, I have discovered that others do not share this acceptance. On a number of occasions, I have found my scars make people uncomfortable. Their eyes widen, I see pity and fear in their eyes and discomfort in their silence as they turn away. 

They see my scars, but they do not see my story.  

So in the years that followed my surgery, I began to research tattoos, artists, designs. I was searching for inspiration, and someone that could create what I feel on my inside, and put it on my outside. 

I became intrigued by the Japanese art of kintsugi (golden repair) for broken pottery. Kintsugi treats the breakage and repair as part of the history of the object, and something that adds value. When I found a tattoo artist whose style fitted what I wanted, I asked her to create a tattoo that included my scar as part of the design, rather than something to disguise. 

When I saw the finished design on the day of my tattoo, it just felt right. 

My scars, and now my tattoo, bear witness to a decision I made to help safeguard my future, to hopefully see my children grow up, and to grow old with my husband. 

They are a testament to the medical professionals who worked to save my life, and who put me back together once they had done so. 

They are a tribute those who supported me when I stumbled, and then helped me stand tall. 

They remind me I am strong. That out of these scars come strength, grace, healing, new beginnings and growth.  

They are a tribute to the women in my family who went before me and met cancer. They did not have this knowledge and they paid for this with their lives. Their gift to me was my life, and I hope I can give this gift to those who follow after me.

So now, if you see my scars, you can see my story too. 

Cancer, you do not define me. I am who I am. My scars are part of my life now, they are me, and I am not ashamed of them.

Tomorrow is not promised, but today is here now.  Live, laugh, and love. Fear less. 

By Estelle Morton

*Tattoo by Angie Dawn at Gallery Custom Tattoo in Wellington.

A Road Less Travelled


This was not the life I had imagined I would be leading.

When I imagined myself as an ‘adult’, it was an image with a husband, a home and probably some children. I’d have had a well-paid and rewarding career, although the details of said career had yet to be ironed out. I knew I could just have my fun in my mid to late 20’s. Everyone else I knew was.

I only had 6 months of this adulthood.

After two years in Brisbane I had gotten fed up with the mindless office jobs and started to think of my future. After researching study options, I found a counselling degree that I could do in Wellington.



This is it. I knew I had found my calling.

Fast forward three years, I found myself employed in my dream job that I’d moved to Masterton for. I’d just graduated with a degree, I was so proud of my achievement. I was an adult. I had just turned 30.

Dirty thirties! They’d all tell me. Better than your twenties. What happened next hit me like a tonne of bricks. It all came spectacularly crashing down around me.

“Hi, have a seat. It’s not good news. Its Leukaemia”. (On call Doctor)

Four years later, I still remember the events of that day, diagnosis day or D Day as we like to call it. Like a movie stuck on repeat, I vividly relive sections of that day continually.

The day everything changed, the day the earth shook violently beneath my feet and knocked me flying. I was left frantically scrambling to regain my balance.

What the f*** is happening?

“Mum, am I gonna die?”

Those first 5 weeks in hospital after D Day I didn’t think I’d ever stop crying. Terror would pool in my eyes and cascade down my face all day every day. The nurses began to know me as the “anxious one”.

What led me to the Dr’s office that day? Most people are curious how I knew. The first symptom was my gums. They began bleeding, and the blood had a putrid smell. My gums stung and hurt and throbbed all at once. They were swollen, and in some areas the swelling covered most of my teeth. Chewing became too painful. Then came the sweating. I had swollen glands in my throat accompanied with a pain I hadn’t experienced before. I began taking two hour naps once I was home from work, and woke with raging fevers. The fatigue was indescribable. I had two trips to the dentist, and two visits to the GP over the month leading up to D Day and countless sick days. Had my new GP not agreed to do bloodwork, begrudgingly, I could have had a very different outcome. He even rang me the following week to apologise for his misdiagnosis. He had been steadfast in his semi-retired belief I was suffering from stress, not acute myeloid leukaemia.

What followed was a whirlwind of agonising multi-chemotherapy high dose rounds of ‘treatment’ and more time in hospital than I cared to count.

I was powerless over every aspect of my life. Everything was in complete disarray. Most people have an abstract knowledge of their mortality, idly expecting to reach an old age.  Sure, no-one lives forever, but it’s not something people are usually consciously aware of until they are much older. That bubble burst on D Day, and facing death, avoiding death, and trying not to die came to the fore. I was no longer bullet proof, no longer able to go about my days with the comfort of expecting to live a long and healthy life. Death was everywhere and it coloured my soul black for quite some time.

Another thing people want to know is, “so the cancer’s gone? Great what are you doing with your life NOW?”. You know, because, everything happens for a reason. Right?

It took me 6 months to claw my way back to some semblance of a life, although I no longer felt that I belonged with all the happy humans. It was like I was stuck in some parallel universe looking in on people’s lives pressing on with a frustrating normality to them, while I felt left behind. While my days were spent in hospital rooms, it seemed everyone else was preoccupied with work, their relationships, celebrations, and, everything I was no longer a part of.

I spent the 18 months between treatment finishing and my second diagnosis waiting for the axe to fall. And fell it did: I relapsed. Did I will it back? I know I have thought that numerous times, because I didn’t have the right ‘think positive’ attitude that myself and everyone else thought I should have had. Bitterness, depression, and anxiety about my cancer returning clouded my entire being.

In a weird way, there was a part of me that felt relief at the cancer returning. Like the other shoe had dropped. I could stop dreading it. The fear of something occurring is often worse than the actuality of that something occurring. I felt it in me weeks before it was re-diagnosed, snaking its way back into my bone marrow. I felt it in my spiked anxiety as I turned to wine in the evenings, and lorazepam during the days. I could see it in what I called my sweat attacks, feel it leaden every step.

Here we go again.

I’d always said I could never go through with a bone marrow transplant if it came back. Well as it turns out, I did. Only just. My brother’s words ring in my ear that day we were all crowded in my haematologists office discussing the next steps. “Well do you want to die?”.

Not really, no. I’m only 32. I just don’t think I can do this. Again.

Somehow, with a few hiccups along the way, I made it out the other side. The best part of 2015 spent in that damn place again. I emerged with a lot more scars, mentally and physically. But surviving had nothing to do with a positive attitude, or being brave and strong. It is a lottery.

So, back to what am I doing now? That is a very complicated question.

Some days I wonder how I did it, other days it’s a struggle to get up in the mornings. Most days I wonder what the point of it all is.

I don’t have time for it to swallow me. It wants to, and Jesus does it try. It would be so easy to let it engulf me, wrapping me in chains to the couch with my eyes firmly glued to the TV, empty junk food wrappers littering the floor around me. I just need to press on as it’s a hard road back from there too.

But I miss the old me, my old life. I miss what I felt like, and the direction I had been going in. I look through old pictures and see someone unrecognisable. Sometimes I feel like I’m still on pause, while everyone’s kids get older and jobs progress and more destinations are ticked off the travel list. My lists consist of hospital appointments and blood tests, and my transplant birthday. However, with each day approaching 29 July, my stem cell birthday, the chance of relapse lessens.

I know what people are wanting me to say when I’m asked, “So what now?”. They don’t want to hear about my side effects, post-traumatic stress, fear of recurrence and grief. They want to hear that I’m back working, and it’s been put firmly behind me.

Onwards and upwards/can’t dwell on the negative/there are far worse off people than you/chin up

I’m not back working full time, but I am working. Not in my “dream” job though, as after the second leukaemia the company had little choice but to medically retire me.

This is not where I thought I’d be at 34, with the constant hospital appointments for weird and wonderful graft versus host disease complications. My Mum thinks I’m morbid when I say I don’t need a retirement fund; but the statistics on 5-year survival rates for bone marrow transplant recipients is low at 26%.

This is the life I could never have imagined I’d be living.

Scanxiety and a Google diagnosis

So the last few weeks I've been struggling with a huge amount of anxiety. A while ago I found a lump on my mastectomy side of my breast and while my oncologist said it was fine, I was still worried. 

Then, for the last few weeks Ive been getting intense pain shooting down my spine every time I look down or move my neck. I've also been getting heavy nose bleeds several times a day, and wake up every night too hot, then too cold, then too hot. 

So when I saw my oncologist again, I asked how does she know that the treatment is even working? Her answer "Well, you don't." So I asked in that case why haven't I been given regular check ups and/or scans? She said "Well, we can scan you if you like." I say "uhh yes, yes I would thanks!"  "I will book you in right now for a CT," she says casually. I feel so confused. Maybe this is just a big deal to me and not her? Maybe I'm worrying about nothing? You know what, no. This is my life we are talking about here!

The next morning after another horrible nights' sleep of 'boiling hot please get me out of this oven/so cold I cant even feel my eyeballs', I roll up my sleeves and turn to the world's most reliable source - Google. With a smile wiped off my face permanently and heavy stones in my stomach, I officially diagnosed my 23 year old self after googling the following: >too hot and too cold at night during chemo>menopause>menopause symptoms>hot flushes>am I infertile>will I ever get my period again>how to cope with menopause in your 40s (there were no articles for 'how to cope with menopause in your 20s', so that had to do. I couldn't believe it, I knew there was a chance that chemo could make me infertile, but now it was set in stone. I will never forget how truely depressed I felt that day.


So I have the scan on a Tuesday, wait 3 days which feels like 3 months to be told that the results were all clear, my bleeding nose was a normal side effect, my periods should definitely come back due to my age, the menopausal symptoms were temporary, and the feeling down my spine was just me sleeping funny. So yeah, it was a relief to say the least. 

But Ive learnt two things from this week: one is that its OKAY to feel anxious about unusual things going on in your body, but to VOICE your concerns rather than hide them, otherwise the anxiety will control you more than you control it. The other thing I learned is that no question is a stupid question, and I felt like an idiot asking about something that was probably nothing, but its important to tell yourself to be assertive and remind yourself that this is YOUR health and body - Im still learning that the health system is different here than in the US where I was first diagnosed where you actually have to ask if you want things done. 

Moral of the story: go with your gut feeling, be assertive, and don't try and diagnose yourself on google!

That's all. 

No-one Ever Talks About It

Today, in a conversation with friends, I referred to myself as a "worthless piece of shit." 

Now intellectually I know that's not a true representation of the value my life is bringing to the world and my friends quickly jumped in to lecture me on why that description was inaccurate but it highlighted for me a deep rooted underlying belief that being sick over such a long period of time has made me feel 'less than' my peers.

I have managed to work full-time for a total of 6 months since my cancer diagnosis 8 years ago.  SIX MONTHS!  Yes, I have juggled a few part-time positions over the years, but still struggled.  I never got back to normal after treatment finished and as time went on, more and more cracks appeared.  "You have chemo-induced chronic fatigue" turned into "You have developed an auto-immune condition and you will be sick for the rest of your life."  

This whole cancer/chronic illness rollercoaster has been steeped full of feelings of guilt.  No-one ever talks about it.  But I feel terrible that I got sick.  I'm not oblivious to all that my family had to give up to help me during that time and beyond.  And I'm not just talking about my husband and kids, but also my Mum, my Dad, my sister and brother, my in-laws, my friends.  This illness has taken their time, and their money.  People had to be with me to help with kids, they had to drop everything so they could cook meals, drive me to appointments, pay for extras we couldn't afford, travel across the world to be there for me.  

I had to watch all of it.  

And it broke my heart.

Sometimes I think I've put the burden down, but then, like today, it rears it's ugly head again and I realise I still carry bucketloads of guilt with me.  And I suspect I always will.  The cancer is gone, but I am not 'better' and I am never going to be 'normal'.  Like a lot of people post treatment, I'm still coming to grips with my life after cancer and the long-term effects of treatment.  

Some of those effects haven't happened to my physical body, some of the effects are still rippling through my relationships, my experiences and my bank account.

I feel like this is where I am meant to say something to make it all ok, something inspirational and full of sparkly positive vibes.  But I don't want to.  I just want to acknowledge that these feelings are there.

Just incase someone else out there is feeling them too.