Monday, 28 July 2014

Mum and Uncle Long Legs

Well the last 5 weeks has been an interesting time for me. My lovely husband Mike has been away and I have been a full time single Mum during that time. Since I got diagnosed in July 2010 Mike has been caring for me, caring for our little boys, running our bookshops, and studying. He has an enormous load to bear and he takes it in his stride and somehow gets through every day with little sleep and loads of stress, but always appreciating the little things in life. He is an amazing, supportive and loving husband and I am so glad we share our lives together.

When I suggested that Mike take a hard-earned break, he was hesitant, and really didn’t want to leave me alone in case anything happened. He was terrified that I would take ill and die while he was away, or that I would get so sick that I couldn’t look after the boys. Not to mention that leaving a family run business for a month is a big deal, and big ask of the staff and very expensive. Eventually he took to the notion and excitement started to build, the doubt subsiding slightly. So in mid-June Mike set off on a lone adventure, leaving me to go full mumsy.

I had lined up support, a steady stream of family and friends coming to help. It was all scheduled down to the minute, and if anything did go wrong, there would always be someone here to help me out. We had Chris, (Mike’s Mum: Nanna) Sam, cousin Roger and Em (Little Miss Get It done, love Your Sister administrator) all coming up. Over the time of the ride, I was so busy that I didn’t really get to see a lot of my family and friends at all, it was all work, work, work, so this is a lovely opportunity for me to catch up with some loved ones, and the kids always love having visitors.

The boys are very excited to see their Nanna and their uncle long legs in the same week. Sam fits into the uncle role right away. Sam has the boys convinced that he can fly on a broom, but that he has had his license cancelled because he stole some undies off a clothesline while he was flying through some backyards recently. Willoughby asks when he is getting his license back as soon as he comes through the door. 
Koala Cuddles with Uncle Long Legs
The kids do their readers, times tables, geography and French every night, showing off to Nanna and Uncle long legs. I am free to cook the dinner, clean up and make lunches while the kids play Uno with whoever is staying at the time. I love that the kids don’t watch TV. Dad brought Sam and I up without a television, and at the time I hated it, I thought we were missing out, but I look back on our childhood now and I am so grateful that he gave us that life. Board games, cards, charades and eye spy were all we needed. On Fridays we have Friday night fun, where the kids get to choose a DVD and dinner, so we make pizzas or fish and chips and watch a movie together on Fridays which is great fun, and a great bribery tool for during the week, if I need it. I always thought I would never use bribery, but as soon as I became a parent I quickly realised that you do whatever works at the time, so the threat of losing Friday night fun mitigates any out of control behaviour nicely.

Of course we all miss Mike, but we skype and email, and I find that the kids adjust well to the change in primary carer very quickly. I think about the changes they will have to undergo when I die, and this experience gives me comfort. Kids are adaptable and they are resilient. Mike is a great father and those things combines make me think that they will be alright in the long run. Of course it will be hard for them, but they will adapt, just like they adapted to Mike’s temporary absence so well.
The Kids Favourite – playing Uno with Uncle Long Legs
I find the mornings difficult. I sleep a lot, I get very tired with the cancer and the drugs that I am on, but with Mike away I don’t have a choice, so I get used to the early mornings, though I do have the luxury of being able to go back to bed for a nap while they are at school. Something I am very grateful for. There have been a lot of times since I got diagnosed when I have thought “Why me?” It’s not that I wish it was someone else, I just wish it wasn’t me and I sometimes long for the life we used to have when I was healthy. But then I quickly remind myself that I have it pretty good really. I have the most supportive hubby in the world, and he lets me sleep when I need it. He does all the chores, prepares all the meals, makes all the lunches and does all the washing. He is very helpful and never complains or even expects a pat on the back for his efforts. Sadly, there are a lot of single mums who find themselves with a terminal diagnosis and they do not have the support I have, and nor do they have the comfort that their kids will be in good hands after they die. It’s all relative isn’t it?

Another thing I didn’t have much time for while the ride was on is scrapbooking and craft. Recently, we were given an amazing opportunity. Scrap Booking Memories run a competition every year, where they encourage scrapbookers from all around the country to submit four projects to be judged. Ten of the best scrapbookers from all around the country are selected, and throughout the next year they complete challenges that are published in the magazine. For the October issue (breast cancer month) their task is to make an art journal. The editor of the mag, Vanessa, thought it would be nice to give the journals that the masters made, to women with breast cancer who would like a handmade journal to write their most precious memories in. When I was first diagnosed, the first thing I thought was “How am I going to record all of our memories so the kids have something to remember me by?” As I am a mad keen crafter, I got right into scrap booking and I use that as a way to process my experiences and leave memories for the boys.

This gift, from the Scrapbooking Memories Masters to 10 women with terminal cancer is just so kind, and it highlights to me just how lucky we are at Love Your Sister to have the opportunity to help these women in some small way. I put a call out on Facebook, and we found 10 recipients for the journals, all of them living with a terminal diagnosis.

I wanted to make cards for the ladies, which would match their journals, so Sam and I could write a little message for each person in them. And let’s face it, it gives me a good excuse to do some craft, it’s for work, really it isJ.

We can’t show you the journals, as they won’t be made public until October, but here are the cards I made, inspired by the journals the masters made:

Tuesday, 8 July 2014


Today is a sad day. Today it is hard to find the silver lining. It is dark and the tears are flowing. It doesn’t feel right to smile. Today I found out about two women dying on Saturday. They were both friends of Love Your Sister. They both had breast cancer.

Moira Lye

Moira featured on the Love Your Sister TV Special. She lived in Canberra, wife to Greg and Mum to 5 children, the youngest of whom are twin boys aged 6.  She did not take her cancer diagnosis lying down. Moira was a determined person and she was willing to squeeze every last moment out of life, every precious experience and each little smile or cuddle with her children.
And she was selfless. Although she was terminal, and knew that there was no cure for her illness, she worked hard on fundraising and advocating on breast cancer issues. I am in awe of what Moira achieved in this arena, she really made a difference, and did it all with such humble grace.
Moira was the sort of Mum every Mum wants to be. Gentle and fun-loving, patient and caring, but balanced and intelligent in her approach to parenting.
Sam and the crew got to spend an afternoon with her, and they all came back raving about how inspirational she was, how incredibly life affirming it was to meet her, I really felt like she was what I should aim to be. A great mother. An advocate for breast cancer issues and someone with peace about her prognosis.

Josie Gaylor

Josie is wife to Kevin and Mum of 2 grown up children. Josie’s sister Jane contacted Love Your Sister while they were making arrangements for Josie’s funeral, when it became clear after fighting breast cancer for 13 years, that she was coming to the end of her time. Josie wanted to make a difference, she wanted to make her funeral meaningful for the future, and chose to ask her friends and family to give a donation to breast cancer research in lieu of flowers at her funeral. Jane contacted us to ask for a collection tin.
Obviously Sam was touched by her gesture, and given that she lived in Melbourne, he wanted to meet her. So they teed up a meeting and Sam went along to visit her at Cabrini palliative care a couple of weeks ago. You may be familiar with Josie, because she and Sam put a post on Facebook when they met in the hospice. Sam had a blast hanging out with Josie that evening, and she helped him face his fears of hospitals and end of life care.

Without knowing them well these women have touched my life. I am in awe of their peace at the ends of their lives, and their selflessness. These two women were remarkable in their own ways, and have left big holes in the lives of the people who knew them best. I know they will be sorely missed by their families and friends.

I send my love and thoughts to Josie’s and Moira’s families and friends at this very hard time of loss and mourning, and thank them for sharing them with the world. I am so grateful for the way they touched my life. Thanks for being a part of Love Your Sister and for showing me what life is all about.

Whenever we experience a death of someone we know, even if it is not someone close to us, it calls to mind questions of our own mortality. It causes us to question if we are living life to the fullest, if we appreciate the beauty and love in our lives. We automatically think things like when was the last time I told my sister that I love her?

Death is a profound part of everyone’s life, and when the grief is at it’s purest and harshest, it can distort the way we normally perceive ourselves.

I have been incredibly lucky lately. My cancer has been stable. It is responding to treatment after being very aggressive and non responsive in the early stages of the disease. So it went from running rampant, to being under control, something none of us expected. I was so close to death a few times that my family were called in. My kidneys and my brain shut down. I was in ICU on machines and drugs that were keeping me alive in the hope that I would get better with support, and eventually be able to support myself again. I remember many doctors and nurses telling me that they were doing everything they could do to keep me alive, and to keep fighting.

Being that close to death, and living with a terminal prognosis everyday has caused me to live my life in the present and make the most of my relationships, because I have come to realise that that is all we have that matters in this life. But even with my diagnosis I have become remiss. I have stopped scrapbooking. This was number one on my bucket list. If nothing else, I want to leave lots of memories, photos and stories for my children to remember me by, and to give them lots of information about their formative years that they won’t be able to ask me about later if they get curious.

I am in a lot of pain tonight, on a lot of drugs and needed to take a bath to relieve some of the discomfort, so the bath is not the place for photos obviously. But tomorrow I vow that I will sort out some photos, write a note in the boys journals, or do a little bit of scrapbooking. I will do a little bit of memory saving for my kidlets. I will also give them an extra big cuddle and tell them again how much I love them.

Thank you Moira and Josie for reminding me to make the most of each moment. May you rest in peace, free from needles, nasty drugs, scans and bloodtests, surgery and endless appointments.

Thursday, 3 July 2014


How far would you go for someone you love…on a unicycle?

Hachette Australia is delighted to announce the publication of Love Your Sister by Connie and Samuel Johnson in November 2014.

Published by Hachette Australia in November 2014, trade paperback RRP $32.99; e-book RRP $19.99

A searingly honest memoir of family, love, cancer…and unicycles by the founders of the Love Your Sister Charity, Connie and Samuel Johnson.

Brother and sister team, Samuel and Connie Johnson have always been close. Faced with the news that they would soon be separated forever, they made a decision.

At the age of 33, Connie was diagnosed with breast cancer. Having already survived cancer twice in her young life, this time it was a whole different ball game. This time she will die, leaving behind her two beautiful young sons. As a young mum faced with her own death, she wanted to make a difference, and she knew just the way to do it ─ send her brother, Aussie actor Samuel Johnson, on a one-wheeled odyssey around Australia.


  • To break the world record for longest distance travelled on a
  • unicycle
  • To raise $1 million for the Garvan Institute
  • To encourage young mums to be breast aware
Their message is simple; don’t fall into the booby trap, be breast aware!

Samuel has pedalled all around Australia on a unicycle, raising money and raising awareness to make sure people get the message. He travelled through every state and capital city, to Australia’s eastern-most and western-most points, our country’s highest and lowest places, and has ridden more than 15 000kms, smashing the existing world record.

Love Your Sister reveals Connie’s fourth, and secret aim; to fix Samuel. Their story tells how Samuel cleared his diary, cleaned himself up, and kept his promise to his dying sister. All the boxes are now ticked, nearly $2 million already in the research bank and many young mums have been diagnosed with early - treatable breast cancer because of Connie and Samuel.
The Love Your Sister Charity…it’s a great cause. Sam’s a great guy. – Guy Pearce
Samuel, I take my hat off to you…big heart, big life, big love. – Cathy Freeman

So is the job done?


Two million dollars is not enough, they are determined to keep up the fight. Connie vows to fight ‘tilher dying day, and Sam says the fight will go on a lot longer than that.
In their book, Love Your Sister, these two remarkable Australians share their tale, from their childhood, throughto the finish line and beyond in this truly unique story. Part memoir, part travel diary, part conversation, Love Your Sister is an inspiring and unforgettable book that shows just how far oneman will go for his sister.

A portion of the profit from each copy sold will go directly to The Garvan Institute.

Samuel Johnson is an Australian Actor with 20 years’ experience, best known for his work on The Secret Life of Us, Crackerjack, Underbelly II, and Ten’s Rush. In recent times he is more proud of his work as a breast cancer advocate and determined unicyclist.

Connie Johnson is a wife and mother of two beautiful boys. She has worked in the disability sector for 10 years and since her terminal diagnosis spends her time with her family, advocating on breast cancer issues…. and seeing just how much torture her brother will endure before he says no.

Follow Connie and Samuel on Facebook , Twitter - @loveyoursister and Instagram

For further information about Love Your Sister, please contact Alice Wood at Hachette Australia on 02 8248 0883 or alice.wood@hachette.com.au