LYS Diary: Day 8

Road to Nhill

I never realised how much the community engagement would effect me. It just goes straight through my heart. Sweating it out on a unicycle is such a tiny price to pay for the chance to engage with communities on a truly meaningful level. Today was everything I wanted Love Your Sister to be.

We rocked up at Jaypex Park and it was chock full of families, all gathered harmoniously in beautiful surrounds. One by one, I met just about all of them. Kim wore a massive pair of pink costumed knockers around town all afternoon and raised a small fortune.

I’ll give you this for free, those knockers would not have been easy to carry around and she soldiered through the heat like a right trouper! Janelle organised the whole shebang and hit it out of the park, so to speak.

Ten’s ‘The Project’ crossed to us and that was absolutely nerve-wracking, as it has been every time (3 times now - wow!). Then we had a sheep shearing challenge. Chippa the sheepologist, kept everyone entertained while poor Josh (gun shearer) had to take the city slicker through it step by step. I did terribly, but it didn’t matter. I had great fun and learnt a lot.

This trip is full of things I’d never have experienced otherwise. All these firsts tickle me pink, I tells ya. The Kennedy’s dropped over a pav after it all, and I thought, if I die tomorrow I die a contented man.

Connie's Diary: Feb 28 Part 2

Then after a big lunch in Hahndorf, a gorgeous German themed, tree lined tourist town not far from Adelaide, we got back in the boobmobile and went back to Adelaide for another interview.

Belinda Heggen from FIVEaa in Adelaide was just lovely and we had a lovely interview with her looking out on Adelaide city. Adelaide really is a beautiful city. Samuel and I lived in Gawler, just out of Adelaide when we were in grade 3 and 4, we came back for a visit when I had cancer the first time, but I haven’t been back since. It feels so different from Canberra which seems so new when compared with Adelaide with so many beautiful old buildings.

We then walked down the street to the Bendigo Bank on Pirie Street in the city where ‘Lil Miss Macaron’ had been selling her macarons all day. Now let me tell you about the gorgeous Bella AKA Lil Miss Macaron. She is 28 with 2 little kidlets, and she runs her own business baking and selling the BEST macarons I have ever had the pleasure of eating. She was inspired to offer her help after seeing Love Your Sister on The Project late one night, and she offered what she is best at, macarons! She donated the ingredients and set about baking, and baked solid for a whole week leading up to this day. She made every flavour you can think of in a beautiful, colourful, eye catching display which consisted of over 1900 mouth-watering macarons. On top of all this she also set about promoting the event, had a heap of promotional posters made up in order to spread the word, and then set up shop and sold macarons all day for Love Your Sister.

Bella had a friend with her, Jess, from Buggyboo, who has been eagerly printing up professional, Love Your Sister Posters. She has been selling them online and also at the macaron stall. Together Jess and Bella made over $4000 for Love Your Sister. I am so deeply impressed by Jess and Bella and was so honoured to meet Lil Miss Macaron.

It is so touching to see Adelaide get behind our cause.  Mel from Deventer opened her heart and her home to us and provided professional PR services for our Adelaide trip, Bella cooked her little heart out, Jess printed like mad, and the radio stations have all put their full weight behind us. It is really touching to see individual people, and businesses giving their time, a most valuable resource, and their expertise to help Love Your Sister raise money for research and to help us spread the word.

Connie's Diary: Feb 28 Part 1

We welcomed Thursday morning in with an interview with Dylan Lewis and Shane Lowe on Nova from the red bus, parked on the corner of a busy intersection. It was so funny, they asked the listeners to hoot if they saw us as they drov by and heaps of people hooted their horns. Every time, Dylan would  throw his arm up in acknowledgement, striking a pose not unlike John Travolta during his ‘staying alive’ dance. That Dylan is such a character. And check out producers Tim’s cool Hawaiian shirt and matching shorts, he must have been freeeeezing, ‘cos I was cold and I had trackies on!

Then we went to a park and did a live cross to my favorite morning show host, Mr Karl Stefanovic at the Today Show. I have never done a cross before. It is such a strange experience because you are talking into the camera, but you can hear the person loud and clear. It was great to talk to Karl again, the support of Karl and The Today Show is so important to Love Your Sister because it really helps us spread the word.

Then it was down the street to the studios of Mix102.3 and an interview with Jodie, Mark and Snowy. What an interview! We were there for half an hour and were chatting while the songs were playing, and they asked if they could ask some difficult questions. I said yes, I talk about my cancer and our family situation so much I didn’t think they could ask anything so difficult that they could make me cry in a quick radio interview. How wrong I was! They managed to cut to the heart of the matter in a couple of questions. Sam and I were both crying, the hosts were crying, it was really emotional. I felt so much during that interview it was really honest and I felt a little exposed, but I thought it would be good for people to hear about some of the issues that we tackle, not just the fun of riding a unicycle and getting sore butt cheeks. I wonder how people felt when they were listening, if it came across as emotionally as it felt for us in the studio?

Then we went to Cafe Scuzzi down the road and stayed there for an hour or so while people came down to meet Sam, get info on Love Your Sister and to buy merchandise. I got to meet some people I had been talking to on Facebook and some people who had been listening to the radio earlier so it was lovely to chat to people to whom the Love Your Sister cause means so much as well. And a shout out to Adam and Sonia who I met there, lovely to put a face to the name!

Then we hit the road and Sam rode the unicycle to Hahndorf. It was a real experience for me, following him in the van while he rode. Our sister Hilde and our cousin John rode with him on push bikes through the Hills of Adelaide. Whilst Hilde and John put in valiant efforts, they didn’t last as long as Samuel, it made me realise just how hard he has to work every day to do the k’s he is doing. It was also really interesting to see to how the team works together to keep Samuel safe.

Jon Bon Jonno rides behind him on the motorbike, then, Ley Ley follows them both in the van. They travel at 10-15km/h so hold up the traffic. The shoulder is often narrow or non-existent. Ley Ley and Jon Bon Jonno keep in touch by radio that is wired to the motorbike helmet and Ley Ley talks to truckies on the CB radio as they approach, warning them of the unicyclist ahead. The support vehicles periodically pass the unicycle and pull over so that traffic can pass. I think they are doing everything they can to keep Samuel safe, but it makes me worry. My brother and my nephew are out there riding on the side of roads on the unicycle and motorbike and we rely on all road users for their safety. Thanks to all the truckies and drivers who have kept him safe so far!  

Part 2 soon…

Connie's Diary: Feb 27

So I got there just before the boobmobile rocked into town, and the gorgeous Mel from Deventer PR came to pick me up from the airport and took me to her lovely sister and business partners home to meet up with the boys. Before I tell you more, I would like to stop here to tell you about Mel Deventer and Jody, her sister. They run a PR firm in Adelaide, and they came forward and offered to help Love Your Sister after reading about us in the Herald Sun back in January. Deventer is a whizz bang PR firm, who are well connected, very experienced and have a great way to help us. They not only volunteered PR services through their firm, but also put all of us in their homes, and organised everything about Adelaide down to the minute. Whether it is because they are very close sisters or just thought this was a great way to contribute to a great cause, I am so glad they jumped aboard.

Mel took me back to Jody’s place and we arrived at about the same time as the boobmobile. I was picturing that I would get to give Sam a big hug, and be able to sit down and have a chat and catch up, but that’s not how it turned out. He had been riding through the Adelaide Hills in pouring rain and he was soaked to the skin. After he had a shower and got warm and dry I thought we’d be able to catch up, but there was a key emergency, with no caravan keys to be found anywhere. So all eyes and hands were on deck searching for said keys, which after 45 minutes of extensive searching were finally located. Due to the delay caused by the keys we had to leave straight away, so no welcome hug or chat to be had, straight into action. I guess that is just the pace of Love Your Sister.

We went down to The Garden of Unearthly Delights where the Fringe Fesitval is held. We set up our merchandise table and mini and bikes and unicycles. It was fun and interesting to see how  Sam and the crew go about their fundraising activities in each town they visit. Having the miniature trick bikes and unicycles at the site where they sell merchandise is fantastic, ‘cos the young and young at heart get to have fun on the bikes and people who are more interested 

I got to speak to a lot of people about Love Your Sister. It was so interesting and at the same time heart breaking speaking to people about their experiences with breast cancer. There are a lot of stories of victory and tales that belong in the past because the people have recovered and moved on, but for others the pain goes on, because they are terminal and won’t get better, because the person they love is gone but the pain of losing them doesn’t go away easily, or because the loss is very recent. It was a real eye opener for me. Sam must have his heart broken 20 times a day, I don’t know how he can pedal 80ks then get off the uni to hear all of these stories. Samuel’s strength is physical and emotional. I have always loved and admired him, but now my admiration has reached new levels. I am so glad that these people who meet Sam along the way can talk to him about their experiences. And I am glad that Sam is learning about breast cancer from so many different viewpoints, it makes the whole epic adventure even more meaningful and poignant.

LYS Diary: Day 7

My oh my, did Dimboola turn on a cracker show! This is a town with a very healthy sense of humour my friends! Police escort into town - dingaling!

The main drag was closed off and lined with locals. We pulled out the trick bikes and the usual kid frenzy ensued. Met the locals. Shimmied with the Bendigo Bank team. Then, the moment I’d been waiting for. The emu challenge! A horse float backed in. The emu was clearly distempered, judging by how loudly it was thrashing about inside the float. I was pumped. But something wasn’t right. If this emu was feeling a bit testy, then what about all of the kids milling about? ‘What about the kids?’, I asked. ‘This emu doesn’t mind kids’, I hear back. I don’t have time to give it a second thought as the door thingy on the float was being lowered.

I scooted off quicksmart and after a few nervous moments, turned back to see…a guy dressed in an emu costume, running after me! COMPLETELY HOODWINKED! Like the whole Santa Clause thing, I wanted to believe, I suppose. Then it was straight off to the lawn bowls club for a roll! The locals were in such bloody good spirits and it was so infectious. Had a great time. Massive lid tip to the Brittons for making us feel so at home after an incredible day of family, laughs and community.

Thanks Gail Hislop!

A little love and thanks to Gail Hislop!

Our unspoken (until now) hero who also helped capture the apple challenge at Bacchus Marsh! Thanks for letting us use your photos! They are lovely shots.

If you have some photos please link in on Twitter, Facebook, Instagram etc.

This may be my journey on a Unicycle but it’s about awareness for everyone so we’d love your photos! xsj

Love from That Space In Between!

Sarah from That Space In Between has just put up a blog post about Love Your Sister.

Read the Blog

Now back to Horsham Cafe’s challenge! Check out my Twitter pic… xsj

LYS Diary: Day 5

I spotted these massive boulders on my way in to Stawell today. They were stunning and I had to stop even though I was running behind.

I grabbed a unicycle, climbed on of the boulders and rode on a boulder! So many firsts on this trip…anyway, it wasn’t until I was chatting with a local afterwards that he told me they were called ‘The Sister Rocks’. Uncanny. No wonder I was drawn to them!

"They gain impressiveness partly from the fact that they are of particularly large size, and partly for their unexpectedness. Such tors usually occur in mountain areas, or in areas where there are other large and abundant rock outcrops. The Sisters, however, stand up in lordly isolation, set in the middle of the bush, on an area that is little more than a sandy plain with low undulations. They are the remains of an enormous mass of granite that at one time formed the core or heart of great mountain ranges that have long since been worn away by the ceaseless activities of wind and sun, rain and frost, and running water."

LYS Diary: Day 4

This was the day when I realised what I’ve gotten myself into…

The heat alone was crippling enough, without the northerly head-wind! The cramps went to another level, despite my best efforts. I was unsteady on the bike and the mind games started. If I was tired now, what chance did I have? Have I really thought this through? What made me think I could do this? Etc etc.

There was only one thing to do. Shut that crap out and soldier on. So I did. And I got there. Eventually! I’m going to have to get a lot tougher if I’m a chance going through the desert in a couple of weeks time!!!

Connie's Diary: 16th - 18th Feb

Saturday 16^th Feb, Day 2 of LYS:

I was supposed to go home to Canberra with my hubby, little bro Dave, and my boys, but woke up to complete exhaustion, and was so tired, and in so much pain, that I couldn’t travel, so back to bed for me. I will have to recover a bit before I can get home. It hurts to breath, I am worried I have worked myself sick – literally, gee I hope not.

Sleep. Sleep. And some more sleep

Sunday 17^th Feb, Day 3 of LYS:

Sleep. More sleep. Don’t even have the energy to talk, let alone check the Facebook, feel terrible that I am not answering messages and keeping up with how things are going, and even where Sam is at, but I am spent, just too tired. I have to get home today though, because I have a very important scan tomorrow.

Thanks to my generous cousin, who shared his frequent flyer points with me, I am able to fly home this arvo, and will be able to make it to the hospital for scan on Monday. Still hurting to breath, not feeling well at all.

Monday 18^th Feb, Day 4 of LYS

Fight through fatigue and pain to get up and get to scan in the morning. Thanks to my wonderfully supportive husband, I somehow make it. And great news – there is no disease progression!!!!!! This means the cancer hasn’t grown through the chemo, and I can stay on this chemo for another 3 months. This could not be better; it is literally the best result I could have received!

The doctors, give me a pretty thorough check up while I am there, because I am feeling so rotten, the pain is bad, the energy is low and I am feeling very out of sorts, but they give me a clean bill of health, it appears I just worked too hard, and need some rest to recover from it all.

I am so happy; this is really great news, home to rest now. I will get to back to LYS and Facebook when I am feeling a bit stronger, which won’t be long.

LYS Diary: Day 3

Pit stop between Ballarat and Beaufort!

Rocked into Beaufort today with absolutely no idea what the Bendigo Bank there had arranged!

We met at the rotunda and I was stoked to see a large section of the community gathered. The local brass band were pumping out the classics, Rotary were all over the snags and fizzy and the Beaufort CFA had a truck there with the lights going.

I pulled out the trick bikes we carry for the kids, and soon they were scooting madly about the place and everyone was having a merry old time. Then I was issued with my second challenge!

It turns out that the guy who invented Vegemite was a Beaufort man, so it fell on me to smear myself with five jars of Vegemite in 60 seconds. When they told me I had to take my top off, I froze on the inside. I always do. It’s happened when I’ve done tv work before too. I don’t like taking my top off because I’m pigeon chested and I’ve been self conscious about it since I was a kid. But there wasn’t time to bother about that. It was all for a good cause and everyone was waiting. So I committed. Fully. Got it all over me, then finished with a jig. Gotta have a laugh.

At the end, when I was getting hosed off by the CFA, with no top on, I realised I didn’t care about my stupid pigeon chest anymore. Who knows, by the end of all this I might actually get over myself! xsj

Connie's Diary: Launch Day! (Part 2)

Then it comes time to thank Sam and say goodbye to him and I have to choke back the tears. What he is doing for me, and for women and families all around Australia is amazing, awe inspiring and I cannot think of enough ways to describe my gratitude to him, my faith in him, and my love for him.

Then it is over to Garvan, who are constantly working towards cures and better treatments for all kinds of diseases, including Cancer, and Kylie Sherwood Kelly gives a very touching speech about their involvement in Love Your Sister, and I learn, after working with her for nearly 2 years, that she lost her mother to cancer when she was just 7 years old. Cancer really doesn’t discriminate, it effects everyone in some way or another.

Deb from the Bendigo Bank then talks about their commitment to Love Your Sister, I am so proud to call them our partners, as they are truly a community based organisation, that cares about its people, it is a really good match for LYS and we are honoured to have them on board our little engine that could.

While Molly and Brigitte are winding things up, Willoughby says very earnestly to Samuel, ‘How long will it take you to ride all the way around Australia?’ and when he answers that it will take a long time, almost a year, Willoughby replies innocently, ‘can you please hurry so I can see you again soon, I will miss you Uncle Sammy, and you have to be careful riding your unicycle, because it is very dangerous and I don’t want you to fall off’, to which Hamilton adds ‘and make sure you go into your caravan when there is a storm, it is safe in there’ Bless their hearts, so big it’s surprising they fit in their little bodies!

The helicopter is circling above, to get aerial shots of Sam riding through the heart shaped human tunnel, it’s time for him to get on the Uni and ride away, I am so full of mixed emotions, proud of him, excited for him, but also sad that I must bid him farewell, but he will only be gone a year, and I fully intend to be here when he gets back.

Before I know it, the helmet goes on and he is up on the uni riding down a ridiculously narrow ramp, through the human tunnel and away. I feel so triumphant, that we have been able to pull this all together and get him on the road, but I am just so sad to see him go, that I just cry and cry.

But there isn’t time for tears, there are heaps of people milling about, waiting to meet me, little old me! Can you believe it, I can’t! I get the chance now to meet heaps of people who stood out in the hot sun during the whole proceedings and waited patiently for their chance for a photo, and autograph, a chat or a hug.

A special call out to Margie from Mornington High, you are so beautiful and so sensitive, you made me want to cry, I will come and visit you and all the crew at Mornington high when Sam gets back to Melbourne. It will be great to come back to my old high school and see you all.

After all the excitement was over I found a couch in the transit bar and laid down with my feet up and drank 2 huge glasses of lemonade to rejuvenate for a quiet and happy afternoon with some dear family friends of ours, Paul and Kate, and their wonderful boys Kit and Darcy, who Willoughby and Hamilton just adore.

Before I knew it I was back at Fed Square to watch Sam cross live from Bacchus Marsh (his first stop on this massive journey) on The Project. Had the pleasure of catching up with some of the survivors, and siblings of survivors, and some siblings of those who weren’t so lucky, from back in the days of my first cancer. It was the perfect way to top off a very emotional but wonderful day.

LYS Diary: Day 2

Wow. I have such a renewed faith in humankind! All types of people in all types of places and situations are stepping forward to donate. There’s nothing more encouraging than having a car load of people pull over on the highway, rush out and shove notes in your tin. All of a sudden you don’t feel your legs burning up anymore. All of a sudden you’re not wondering whether you’ve bitten off more than you can chew. All of a sudden you’re drowning in joy and generosity. It makes my legs lighter and it lifts the whole team too.

We’re having all of the teething issues you’d expect us to have at this point. One of our caravan cupboards was a little loose, which resulted in tomato paste EVERYWHERE! We still haven’t quite managed to get the water going. Our storage system is barely coping (invariably what you need is at the back and bottom of a pile), we’re still trying to get our freezer to freeze properly, my body isn’t coping as well as I’d like and we didn’t meet our kilometre quota today, but all of that kinda stuff will iron itself out in due course.

I competed in a TimTam challenge today and found out that I could balance 15 or so packs of TimTams in my hand, whilst on the unicycle!

Afterwards I met a guy called Dimitrios. He lost his sister to breast cancer at the same age as  I am now and he brought along something for me to sign. It was the tie he wore at her funeral. I didn’t want to wreck his beautiful tie, but he wanted me to, so I signed the back of it so he can still wear it. He still misses her pretty badly and my heart bled for him. It’s meeting other people, also directly effected by breast cancer, that is wrecking me. In a good way of course. Off to Beaufort tomorrow for a Vegemite challenge and getting there via the Avenue of Honour, which’ll be amazing. Talk soon! xsj

The First 30 Seconds of #LYS13

Here we go folks. The first 30 seconds of Love Your Sister madness. Thank you for the overwhelming support and generosity. We hope to see you all soon. xsj

It has Begun!

I thought this would be the best day of my life. All of the hard work over the last two years finally coming to bear. All of my friends and family together. I had absolutely no idea how hard it was going to be to say goodbye.

I’ve always done the ‘ghostie’ to avoid goodbyes. I’m that guy at the dinner or gathering that disappears without a word. I’ve always hated goodbyes. I don’t know why I thought this would be any different.

The day itself is an amalgam of frenetic snapshots. Anxiety at no one turning up, fear that I’d fall at the first hurdle (a motorbike ramp coming down off the Fed Square stage), photos for everyone, smiles, thank-you’s, not enough time to see my family and friends, so many news cameras (you mean this whole thing might actually work!), more people than I could poke a stick at, Mornington Secondary standing stoically through the heat (onya Mitch!), Molly annointing my sis with a pink akubra, my nephew Willoughby on stage, grabbing my hand and saying ‘will you ride extra quickly so you can come back soon for me?’, my sister and her amazing speech (I can’t believe how much she makes me cry sometimes) and then that beautiful moment at the end where everything chrystallised into one moment of colour and clarity.

The human tunnel! Riding through that love heart of people, all saying yay for Love Your Sister gave me an incalculable amount of joy. Hats off to every single person t hat came to Fed Square. What a send off. Connie and I feel most special.

I competed in an ‘Apple Pie Triathlon  at Bacchus Marsh upon arrival. First leg - bobbing for apples; second leg, peeling and cutting; third leg, pastry, flour and sugar. Well whaddya know if the whole thing didn’t turn into a massive food fight! I’m loving these challenges that communities are setting me along the way. We raised $500 as well! Thanks to everyone at Bacchus for welcoming us so warmly. 

Find more photos on our Instagram account!

More photos to come…

Donating via Direct Deposit

Big love to everyone who has been so generous with their support. It’s great to have you with us on our journey.

We just realized that our account number is a little on the long side (thanks to Krystina who pointed this out!) and we have changed this on our donations page. To clarify - 

BSB is the same: 082-057

Account number is one number less: 13 117 2929

Thanks again for all your generosity. It should be a little easier to show it now!

Connie's Diary: Launch Day! (Part 1)

Today is the big day, I can’t believe it is here. Getting ready at 5:30 is a sombre and quiet affair, we don’t want to wake the team yet ‘cos they need to sleep for more than 1 hour tonight if the can. I am getting sad vibes from Samuel, and I can feel that he is overwhelmed by his own emotions.

I feel sick, it is little wonder, with the amount of sleep I’ve had. Meds should fix that. We are off to FoxFM this morning for an interview with Matt and the Lovely Jo Stanley. We have been really pumped before our other interviews, but this one brings a sadness with it, today is the last day we will spend with Sam then he will be gone.

I snuck in a bit more shut eye on the way to the station:

 

Was very nervous, yet again, meeting Matt and Jo, this is so amazing, I feel like I am getting to see how Sam has lived since Secret Life now, it’s quite odd really. Because my heart was in my throat, and I was feeling sad about sending Samuel off I didn’t do a great interview, but Matt and Jo came to my rescue, they know how to save someone from going off on a tangent, and they do it well, it’s not an easy job they have, and they do it so well. They were so funny, they gave Samuel a gift – an inflatable doughnut cushion to sit on to relieve his, um, tender areas after a long day on the uni and some cream, I don’t even want to know where that will be applied – hilarious!

We then went over the road to the Paper Shop Deli, on Clarendon Street South Melbourne where we viewed a piece on ‘Love Your Sister’ on ‘The Today Show’ on Channel 9. That was an absolutely amazing experience, but more on that later, you might have to catch up with what happened there on Channel 9 soon.

Then off to Fed Square for Launch.

Looking at the size of Fed Square when we arrived was daunting, it is huge! And we want hundreds of people to be here to kick this thing off, what if they don’t arrive? The boobmobile arrives with caravan in tow, so I have somewhere to do my makeup, thanks to the lovely and talented Kate Radford for doing me up, and hiding the fact that I slept for less than 2 hours last night. We are sitting in the caravan, doing the makeup thing as people start to arrive, I can hear them, and catch a glimpse outside every now and then and the crowd is swelling, awesome.

Then who should come to the door but Molly Meldrum. I first met Molly when I was sick as a child, when he came to the hospital to visit sick kids, and it was so lovely to see him again. 

We had a bit of a chin wag, when my beautiful little boys, Hamilton and Willoughby turn up with my hubby. They venture into the van, wearing their wide brimmed school hats when Molly bails them up, to refashion their hats into akubra style hats, it was very endearing.

Then comes Jennifer Hanson for a quick chat, this is getting to be a bit much, all these amazing people popping in to the boobmobile for a chat, I’m starting to feel a bit overwhelmed and emotionalJ

Then comes Jo Stanley, we met this morning for the Matt and Jo show, what an amazing woman, all these people coming to support us, I am amazed, and very touched but can’t cry, don’t want the makeup to run!

The crowd is building and people keep coming to ask if I’m ready yet ‘cos people are asking to see me, this is so weird, ‘cos Samuel is the famous one, and he is the one riding the unicycle, it feels really odd that people are asking for me!

So my face is on, great job Kate, and I step out of the van. There is a massive cheer from hundreds of people as I step out, and there are a heap of photographers and news cameras waiting for me! I am flabbergasted, I have never seen anything like this in my life! Claudia Karvan, Deb Mailman, Katherine McClements, Totti Goldsmith, Brigitte Duclos, Jennifer Hanson , Jo Stanley and Molly Meldrum and of course, the brother of the year, Samuel Johnson are all there for a photo shoot with the media, with little old me in the middle, how out of place am I?  Willoughby and Hamilton are in the mix, and while Willoughby seems to be taking it all in his stride, little Hammy is a bit overwhelmed by it all, and who can blame him – so am I!

The it is up to the stage, I have had a little bit of time to write my speech, with the sensitive guidance of Em and Sarah Hallam, so I’m all ready, but getting up on stage and looking out at all those people makes me so nervous. The Mornington high school drumming band kick off an amazing drum roll to get things started and it’s all on, there is no backing out now, Love Your Sister is alive and well!

Molly starts things off by giving me a Pink akubra, signed, and giving Samuel a lovely limited edition set of stamps featuring some amazing women who have battled breast Cancer, Kylie Minogue and Olivia Newton John, they are very thoughtful gifts, and he brings a tear to my eye when he presents them, then before I know it, it is my turn to speak, I feel weak at the knees and very teary, there is a lump in my throat and although the crowd is very friendly and welcoming, the sheer size of it is frightening to someone like me who is not used to public speaking at all.

I have notes, but it doesn’t really go to plan, I think of other things to say and different ways to say things I had planned on saying, so the notes are pretty much useless to me and I try to wing it. I forget one of our sponsors in my thanks to the sponsors part, and can’t find my notes so I fumble. I wanted to thanks our Breast Friends forever, the major supporters, without whom we really wouldn’t have been able to get this thing on the road, including Jayco, The Bendigo Bank, The Village Agency and Print Design Australia, and I couldn’t think of them all at once and fumbled, so I forgot Print Design Australia. I am so sorry Dion and Di, I am so sorry, please forgive me, you are wonderful and have done so much for us, and I left you out!

Connie's Diary: 14th Feb (Part II)

3:00pm:   Launch day planning meeting with Tanya Singleton from The Village Agency who volunteered her whiz bang Event Management expertise to help us bring the launch together. OK, this is exciting, we have Molly Meldrum and Brigitte Duclos hosting, Claudia Karvan, Deb Mailman, Totti Goldsmith, Katherine McClemments and Jennifer Hanson and Jo Stanley attending. A chopper is flying overhead to take aerial shots of the heart tunnel Samuel will ride through, and a 40 piece drumming band from Mornington high school. AND – I have to make a speech, with 21 hours til launch, which is pretty important! Jitters, nerves, butterflies, how will I address hundreds of people? Will there be hundreds of people? Oh, how is this going to happen?

6:00pm:   Eat, then cook for the boys. Thanks to the beautiful and ever helpful Sarah Hallam, Sam’s right hand lady and best mate, and Sullivan Krueger, our nephew, a striking and thoughtful young man, who cooked two big pots of Bolognese sauce and Chilli con carne for the caravan.

Meanwhile Ley Ley and Jonno are tirelessly working on packing the van, everything from a flint in case they need to make a campfire if they get stranded somewhere, to flashlight, bike tools, not to mention 2 bikes, a motorbike, and 5 unicycles. Huge thanks to Mercedes for providing the sprinter van, I believe it is the biggest van on the market in Australia, and we need every square inch of space it has to offer. Jon Bon Jonno and Ley Ley have been custom building shelving and bike and ramp storage for it, as well as frames for the motorbike and bikes etc.

And I am working with Tanya on making boxes to store the merchandise in for the van, and to sell it from on the trestle table when they stop. After much debating we worked out our pricing and made signs, with the help of Willoughby and Hamilton who contributed some Jackson Pollock style splash painting to the equation. And Tanya Singleton is worth her weight in gold for the contacting job she did on the boxes.

10:00pm    Cook more, honey mustard chicken and beef stroganoff for the caravan, and pack the caravan. Everything from toothbrushes and deodorant (a must with three young men on board) to toaster and chopping boards, generously donated by Gail Hislop. All of it eventually found a home and the boys should have most of their needs met in the first week or two, and will work out the rest once on the road. I tried to think of everything, but I presume they will not even be in Bacchus Marsh before they are writing a list of more things they needJ It’s the nature of the beast.

11:00pm    Night before launch photo shoot with the Ferne, 32 weeks pregnant, going to hang out of chopper tomorrow to photograph LYS from the air, what an amazing spirited woman.

2:00am   Iron on transfers onto T-shirts for Willoughby and Hamilton to wear at the launch, I promised them, and if I don’t deliver I would never forgive myself. I can’t wait till we have official t-shirts, and I can stop making temporary stop gap measures! We have been asked by so many people, in person and online where they can buy them – at the moment we are making most of them, and the Bendigo Bank had 50 made for volunteers at the launch, but we need more, and watch facebook, we will put a notice up when they are available for sale. It should be within a month or so.

3:00am   Pack everything I need for launch day, clean up a little bit, try to write speech, too tired

3:49    Bed!!!

Connie's Diary: Thurs 14th Feb (Part I)

It all starts tomorrow – arrghhhhh, how are we going to get everything done in time?

6:00        Get up with the sparrows to do interview on Nova with Hughesy and Kate. Now, I am a massive Hughesy fan, and even more so after The Project on Monday night when he said that I was beautiful J

Nerves running very high. Adrenaline pumping. I can’t remember the interview at all, but apparently it went quite well, phew! After the interview I was trying to tweet about it ‘cos I was so excited, when Em (my besty) reminded me that I can tweet later, ‘cos right now he is standing right next to me, and now would be the time to talk to him! Also had a great chat with Kate Langbroek, whose little boy is fighting Leukemia. Heart breaking, but she is so strong and positive, I was so inspired by her attitude to it all. I have often pondered that as bad as it is to have cancer, it would be a million times worse if one of my boys was sick, I don’t know how she can bear watching her little one go through the hell of treatment and feeling so sick, she is an incredibly strong women and mummy. Thanks to all at Nova100 for sharing the Love Your Sister story.

When Em asked me how I felt about meeting Husghesy, and this is the photo she took:

9:00        Over to Mix 101.1 to meet Chrissie Swan and Jane Hall after Sam’s interview. Chrissie has been a major supporter of Love Your Sister since the beginning and it was lovely to meet her in person today. She is very pregnant, and still working like crazy, and such a happy person, a big pleasure to meet her.

10:30am:    With the help of 2 inspiring young women who went through my first cancer journey with me, Nat Clemmets and Nat Fielding we managed to get the caravan stocked with everything we could think the boys might need to get them through the first couple of weeks. Nat and Nat are both cancer survivors who have gone on to have families of their own and lead amazing lives. Both have struggled with numerous health problems resulting from the side effects of the treatment we had as kids, but have faced it with strength and fortitude. Both have also been helping in a huge way with preparations for the Love Your Sister Launch. Today they did the food shopping, and helped pack the van and the caravan with everything from insect repellent to beef stroganoff for the freezer. Thanks guys, couldn’t have done it without your help.

The Journey To Departure

Connie's Diary: 13th Feb

10:24     Woke up, felt terrible, took meds, went back to bed.

12:02     Woke up, felt terrible, lay on our big sisters couch watching TV, fell asleep again.

2:46        Woke up, felt terrible, ate, drank, Sam gave me a hug and a pat on the back, fell asleep again.

4:39        Woke up, felt ok, yay! Panicked! Sponsor night starts at 5:30, need to be in car by 5:00

Had a quick shower, panicked about what to wear, got on my ‘Love Your Sister’ uniform and piled in the car with Em, Love Your Sister’s ‘Little Miss Get it Done’ and did my makeup on the way.

Sponsor night was our way of thanking our sponsors, Sam and I realise more and more every day, just how many people (experts) it takes to get an event like this on the road. And we have had so many people and companies get behind us to help make our dream come true!

Love Your Sister is so much bigger than ‘me and Sam’ now. Our Little engine that could is now a steam train going a million miles an hour, and nothing is going to stop it!

I was so nervous making a speech to these really important people, people who have provided support just because they love the idea and want to help. I really didn’t want to stuff it up. I just couldn’t help myself, some tears escaped. But I think I got my point across in the end and I really enjoyed getting to meet people face to face, most of whom I hadn’t met before, because up until now it was all phone and email. It was a great chance for Sam and me to say a big thank you before he sets off on Friday (what did I just say? Friday???? That is less than 2 days away, how did it get so close?)

We got home to 2 massive packages from ASICS, just in time for Sam to set off on Friday. He said “Now that makes me feel like an ‘elite’ athlete”.  He has been so busy with logistics and PR lately that he hasn’t had much time for training these past 2 weeks. Hopefully he still feels like an athlete on Day 1, if he doesn’t, I’m sure that being comfortable on the ‘loonycycle’ in his new ASICS gear will help a little.

LYS Diary: 6th - 11th Feb Part 2

Friday I had some treatment, it was one of those days when I really know I am sick, where every step is an effort, I was feeling heavy and tired and just wanted to sleep, but off to the hospital again. This is a treatment that strengthens my bones so that I don’t get breaks where the tumours are, so it is kind of essential that I don’t pike on these appointments. The lovely staff at 14A at the Canberra Hospital were lovely and gentle and friendly as usual, and the treatment is done for another month.

I was going to come to Melbourne on Friday, for the week leading up to Launch, but couldn’t be away from my darling boys for that long so I stayed home for the weekend. So glad I did. We built another train track (a favourite activity of both boys) and did some more glass painting. Also did quite a lot of reading. My little boys are growing up, they are both going in leaps and bounds with the reading and comprehension. Oh to have the capacity to learn that they do as an adult!

Over the weekend I got sick with tonsilitis, and feared that I wouldn’t be able to come to Melbourne at all, let alone see Sam off on Friday, but antibiotics have come to my rescue and I am now on the mend. Big sigh of relief.

So Monday came around and Mike dropped me at the airport with the boys, they wanted to come with me, but were somewhat consoled by the promise that I will see them on Thursday when they come down in the car with Daddy. They are really looking forward to wishing uncle long legs good luck on his big unicycle ride. And they want T-shirts!

After reading the new idea article I had a big sleep on the plane and arrived in Melbourne somewhat dishevelled, but still definitely in one piece, ready for the onslaught of work. Due to feeling a little under the weather, not much work got done, but I did manage to watch Sam on the desk of the ‘The Project’ on Channel 10. I am so proud of him, he did such a good job, and the panel were so supportive of our cause. I was quite overwhelmed and very excited that so many viewers saw the piece and were moved by it. Over 2000 people liked the LYS Facebook page after The Project, and Garvan are still tallying up all the new donations that came in off the back of it.

After the Project we got a heap of new visitors to our Facebook page and Twitter, and I got some new followers, including, drum roll please…….Megan Gale! I am so glad that we are using social media, this idea of ‘social media for social good’ is absolutely amazing! Thanks to everyone who has liked us and is following our story.

We are doing it, we are getting the word out there, and people are relating to us, sharing their stories of love and loss and getting behind us hook line and sinker. It is so incredible. 

Connie's Diary: 6th - 11th Feb Part 1

Sorry for the late post! It’s been pretty crazy!

Wednesday saw a few firsts in my life…I met Karl Stefanovic, Gold Logie winner, when he came to my house to interview Sam and me for The Today Show. What an experience, I can see why this guy is the journalist he is, and why he has so many awards to his name.

In the interview he cut through to the heart of the story in no time, and made me cry, but not sob uncontrollably, thinking about what we are doing, and what my family is facing in the near future.

The Lovely Vicki, makeup artist to a lot of politicians here in Canberra did my makeup and hair for The Today Show, and what a job she did! Made me feel like a million bucks and ready for our interview.

Another first on Wednesday was I joined Twitter, I am still a bit confused about how it works, and why, but it’s fun so I jumped in. Karl Stefanovic was my first follower! How cool is that?

Hammy is in his first days of school, and he has allergies, really bad allergies. He is allergic to milk, eggs and nuts; anaphylactic allergic.

Last year he had a bad reaction where he stopped breathing and the epipen wasn’t enough, he had to have a second shot to get his heart going and get him breathing again.

This week he had his first visit to the school nurse, a lovely woman, but thankfully, it was just a sore knee, that simply needed a couple of bandaids. I am glad he has met her, and been helped by her in a small and rather normal visit to the school nurse, not a massive dramatic allergic reaction. A scuffed up knee we can handle.

Part 2 will coming soon! 

LYS Diary: Lead Up to Launch

What a buzz! There has been so much happening I hardly know where to begin. We have been doing media interviews, shopping for supplies for the caravan, cooking food for the boys, packing, making merchandise signage and storage and still trying to organise the first 6 weeks of events for Sam to attend to raise money and awareness in each community he visits along the way.

As we are family run, with a very small operating budget (considering the magnitude of the event), nearly all of the work is being done by Sam and me, and our lovely and supportive friends and family.

Haven’t really known what to make of it all, I have been oscillating between feeling almost nauseous with nerves to feeling ecstatic about all the support we have been getting so far. Part of me has been wondering if we can pull this thing off. There is so much work to be done behind the scenes that it is difficult to comprehend how we have come this far, let alone how we are going to make it to launch and beyond.

Thanks, a HUGE shout out to Print Design Australia, Dion and Di have been nothing short of angelic in their donation of time, expertise, and innovative ideas on how to promote Love Your Sister. I only need to say “Do you think we could do some stickers?” and Dion comes back with, “Yeah I thought that would be a good idea, I have done some already, I’ll show you when  see you tonight” and there they are in front of us. Seriously Dion is so committed to Love Your Sister, I feel like he is another brother in the whole project.

And WOW, The Village Agency, where would we be without Justine and the crew? Only a year ago, Sam had never even used Facebook before, and I wasn’t much better. Now, Love Your Sister has Facebook, Twitter, Instagram, Tumblr and even a Youtube channel. No matter how you like to check out what we are up to, you can – in no small way due to the hard work, dedication and technical know-how of Justine and the gang. 

So I think we look like the real deal, and people are donating, and following our journey, but we haven’t even left yet, not one Kilometre has been pedaled. Can we do it? I think if anyone can, it’s Samuel, my dear, big-hearted little bro, but is it too big even for him? I guess we’ll see in a couple of days.

LYS Diaries: 29th Jan - 5th Feb

Lately Love Your Sister has been so busy that it has been giving me a reason to get out of bed every day and get the most out of each moment. Well, not all days can be good days can they? I have hit the wall a bit. I guess I needed a reminder that I still have cancer, and need to take rest when I need it and that I can’t go burning the candle at both ends. After a few days in bed I’m good to go again.

The emails for LYS continue to go back and forth and we are slowly ticking away, getting ready for launch it is all hands on deck. We have an amazing group of people helping us bring it all together, everyone is working for nothing but the love of the cause and their dedication and commitment is heartwarming, and not just that they are great at what they do to boot. Sam and I are so lucky to have so many wonderful and skilled people working to help make our dream come true. And it all starts in just 10 days!

Willoughby and Hamilton have had a great time on the school holidays, Christmas of course brought all sorts of happiness as it does to kids their age, then we got to go away together to the beach thanks to their uncle and aunt, then when we got back they have had plenty of quality time with Dad and Mum.

Daddy has been taking them down the lake, kicking the footy with them, gone bike riding, all the fun outdoors stuff. Meanwhile back at the ranch, I have been doing arts and crafts with them. I love all the fun stuff you can get now, it’s so cool. We have been making and painting plaster molds  glass painting, hama beading, painting and making monsters and aliens with googly eyes.

But the holidays can’t last forever, and on Monday I went through the emotions of first day of school of my youngest child, like many other parents across the country. It’s a funny feeling, being so proud of them, but at the same time, being a bit sad that they aren’t you’re little baby any more. Hammy, just like his older brother at this time last year, looked so cute and undersized in his big school uniform, with his wide brimmed hat and carrying a bag that looks like it weighs more than he does. Hammy did well, although he wanted me to stay, he didn’t cry or grizzle and a few minutes later when I peeked in the window, he was engrossed in what the teacher was saying and had forgotten all about me. My little baby is growing up!

On the first day of school, only the kindy’s, year 7’s and new kids go, so Willoughby didn’t start Grade 1 until Tuesday. He took it all in his stride, happy to be back at school. Here they are, both in their cute uniforms, gorgeous little boys.

LYS Diaries: 29th Jan - 3rd Feb

It’s February already!

You know you’re life has become absurd when you have to stand up the grand pooh-bah at one of the world’s biggest publishing houses for a q and a with Karl Stefonovic in Canberra with sis.

There are moments when almost none of me can truly wrap my head around what’s happening with LYS. Despite it being real to Connie and myself for the last two years, we never realised how truly bizarre it would get. There’s literally a swathe of people helping out. I’ve become firm friends with Dion and Chris from Print Design Australia and Moo Media respectively.

If it wasn’t for the industry and problem solving of Justine Bloome from the Village Agency I’d have surely perished. Solitaire at Bendigo Bank, for her enthusiasm and efficacy. Kylie at Garvan for her guidance. I could go on like this for hours - that’s how much grunt we’ve been granted. Complete strangers mostly, knocking on the LYS door and busting guts to make truly meaningful contributions. It’s staggering to be at the receiving end of such open-ended generosity. If any of you are reading this, I thank thank you from the bottom of my heart.

Samuel

LYS talks to The Travel Tart!

This time, the interview is with Samuel!

We’ve been getting some big love from around the place.

Read the interview here.

LSY talks to Planning with Kids!

Planning with Kids has just uploaded their interview with Connie!

We’re front-page news too!

Awesome to be getting our message out there and have such amazing support.

Read the awesome interview here.

BayFM interviews Samuel

9 days to go til launch

Link: 9 days to go til launch

Thanks to Yelp Melbourne for pumping up our tyres and inviting their huge community down to Fed Square next Friday Feb 15th for our launch party. Will you be there?  Come down, wear pink and show your support for Samuel as he head off on his epic adventure.

9 days to go til launch.

We are in The Aussie Word!

The Aussie Word has been supporting us online and just got a blog-interview with me (Sam)!

They’ve been tweeting about us too so big salute to them!

Read the blog here.

Donations How-To

I’ve been crazy to start this but to have gone so far wouldn’t have happened without generous donations and support from everyone. Big or small!

 

Though I’ve yet to get my uni-cycling grove on (14 days to go!!), donations have now opened so please support us!

 

ONLINE loveyoursister.org

 

IN PERSON   At any Bendigo Bank branch

 

VIA PHONE   1300 73 66 77 (9am - 5pm AEST)

Accepting Mastercard, Visa and American Express

 

CHEQUE OR MONEY ORDER

Made payable to “Garvan Research Foundation - LYS” and free postal to 

Love Your Sister

c/o Garvan Research Foundation

Reply Paid 68593

DARLINGHURST NSW 2010

 

DIRECT DEPOSIT

BSB:  082 057  Account: 133 117 2929

Garvan Research Foundation - Love Your Sister account

*Please use your name as ID for this deposit. 

All donations $2 and over are fully tax deductible

LYS Diaries: 24th - 28th January

Samuel here!

We are a home-grow, grass roots-type event. We’ve got no slick event management company running the show. We’ve got a meager operating budget and we run it all pretty much on sheer willpower and the generosity of others. In-house, we refer to ourselves as ‘The Little Engine That Could’.

Which is why we feel so darn lucky to have secured a national launch. Our two goals are lofty at the very least. 1) Remind every mum in the land to be breast aware. 2) Raise a mill. These are extremely hard to achieve without a national launch.

So kudos to Connie for coming up with a concept so unique and hat’s off to The Project, New Idea, and Today for believing in Love Your Sister. (Actually, special mention to New Idea for donating $2000 to the cause – we didn’t ask). Connie and I have been flitting around doing interviews and shoots this week, which has been fun.

It’s becoming another level of real again. But the more real it gets, the more abstract it gets as well, strangely. I’m only just starting to wrap my head around how truly bizarre what we’re attempting actually is.

LYS Diaries: 24th - 28th January Part 2

The school holidays are nearly over, I can’t believe it, Willoughby will be going into grade one and Hamilton will be starting school. When I was first diagnosed I didn’t think I’d get to see Willoughby start school  and now, two and a half years later, I am only a week away from seeing my youngest, Hamilton start as well. Wonders will never cease. I am so glad I get to share these important milestones with my boys.

We made pancakes the other day and a little droplet shaped like a heart fell in the pan. Willoughby decided straight away that the heart pancake should be for Uncle Sammy, how cute.

After that he wanted to make a big heart pancake for Uncle Sammy to give him energy for his big unicycle ride. This is my feeble attempt….

Hamilton and Willoughby all clean after their bath, tucking into a pikelet before story time.

When Sam and I were kids, we didn’t have a TV or computer games, so we used to play a lot of board games. We loved it. We played games like Othello, Stratego, checkers, cluedo and monopoly nearly every day. I realised last week that my boys are getting old enough to move on from snakes and ladders and start playing some older games. So this week we played Build-a-Beetle, Connect Four and Othello. I loved it and they did too. Here we are after a game of build the beetle. Willoughby named all the beetles we made; amongst them were names such as Speedy, Reddy, Cutey and Fire.