Love Your Sister Blog

By 100001688118 26 Jul, 2017

When Connie proposed setting up a charity in the immediate aftermath of her terminal diagnosis 7 years ago, I was reluctant to say the least. I harboured serious misgivings for many months. Mostly, I didn’t want to be unicycling around the place while my sister was sick, but I was also repelled by the prospect of marketing my sister’s illness.

As I told her at the time, it’s like Pandora’s box. If you choose to ‘go public’ then you can’t shut up shop when shit gets tricky. It’s not the way it works. Having lived a public life for many years to that point I had a fairly acute sense of what the rules were. All in or fold, basically.

One day, almost a year into me and Connie organising the long-distance unicycle ride that would form the bedrock of our new charity, I hurled all of my misgivings at Connie. It all felt private and I didn’t want to air our laundry. I was upset enough to be angry.

Connie killed my argument with two of the most perfectly weighted sentences I’ve ever had directed at me. She said…

‘Sam, this is bigger than us. Besides, we’ve said all that we have to say to each other.’

There wasn’t much I could say. I had to commit at that point. Connie was right.

I unicycled for a year and the rest is history.

Except now that fear from so many years ago has returned.

Let me be honest. I’ve marketed the absolute shit out of my sister’s illness. And now I’ve got to market the absolute shit out of her demise.

It was always going to come to this. I knew it then and now it’s here.

How do you monetise and market your own sister’s death?

You’ll see, I suppose.

It doesn’t make me uncomfortable. Not like the prospect of it used to. It’s bigger than me and Con, I accept that, even more than I did initially.

I wouldn’t have it any other way now. Nothing great can be achieved easily, and I consider a 10 million dollar take for research from her diagnosis to her death, to be a little bit great.

If it wasn’t bigger than me and Con, there wouldn’t be ten million bucks in the hands of our country’s brightest scientific minds. That‘s direct proof Connie was right.

So now I really get that it’s bigger than us. And now, we actually have said all that we have to say to each other.

And in her name, I will simply keep on shouting, from every rafter I find…

‘Our mums matter.’

It’s already been sung and it can’t be said enough. All you need is love. At the centre of love? Family. At the centre of family? Mums.

It’s down to that.

So the flag I wave, and will far beyond Connie’s grave.

By Gayathri Rajkumar 19 Apr, 2017

I was full of befuzzlement before this trip. Things got on top of me. I was spent. Love Your Sister, The Stick, the BHP (Big Heart Project), the Logies nonsense, our structural issues, our desperate lack of operational funds; it all became too much, again!

Whilst I wasn’t in the best shape for the flights from Melbourne-Sydney-Buenos Aires-Santiago-Ushuaia, I somehow managed, courtesy of the resilient Meg Hall from Chimu Adventures, who must’ve wondered what the hell she was in for.

All of my baggage lifted once aboard the MW Ushuaia. Nestled in my bunk in my cute little cabin, as we rolled our way through Drake’s passage, it all just left me. None of it mattered here. For the first time since Love Your Sister began, I actually felt some peace. Some space. I listened to music, I read. Connie’s deterioration became clearer to me as the space grew, so I cried a fair bit. All good stuff.

I was aided perfectly by ‘The Big Mother’. That’s how I refer to Mother Nature. In Antarctica, The Big Mother doesn’t just reign supreme, she rules with impotent fury. Everything you understand and know to be important vanishes under her contemptuous eye. Survival is the only thing that matters. Here, she is at her most tempestuous, sure, but she’s also at her most magnificent. But don’t get lost in wonder, she can turn on a dime and leave you with no chance. The beauty, scale, harshness and wonder of the place are poorly served by our shitty photography and lame languages. They simply can’t do the place any justice at all. It really is the ultimate ‘you had to be there’.

By Gayathri Rajkumar 13 Apr, 2017
Running a charity is very complex. There are rules and regs that would be impossible to negotiate without the expertise ABL provides. The reason we are genuinely thrilled to enjoy ABL’s support is this - they have an incomparably proud history supporting social justice and community initiatives. Love Your Sister is very proud to have ABL as their honorary legal team.
By Alec Marlow-McCarthy 20 Mar, 2017

Dear Sam and Connie,

My brother Brett and I have always been close, having gone through a traumatic childhood together with parents divorcing and step parents coming and going, being moved from school to school etc etc we really only had each other to lean on and always trust to be there. Probably doesn't sound TOO unusual does it, pretty common these days I suppose but  as the years went by we were thrust into further heartache with our father passing away very quickly with bowel, liver, colon cancer in 2010. He was diagnosed in January and by May he was gone. My brother and I were 7 & 8 when our parents split so having our dad come home to Perth from Cairns to die was very bitter sweet to say the least. In 2014 our half brother ( eldest son from our fathers second marriage) took his life due to severe depression and grief over our fathers passing.

Again this devastated my brother and I and with each of us having our own little families we felt it was time to turn the tables on the crap that had consistently been coming our way and do something fun and positive and bring in the year with happier intentions. So we planned a trip to Japan. Brett's wife Ami being Japanese and my husband Dean and I always wanting to visit Japan, we went for it! It was a trip of a lifetime one to bring light and happiness to our lives once again. We would spend our first Xmas together in years! with us living in Karratha WA and Brett living in Cairns, it hadn't been a luxury we could often afford.

December 2014 we all jetted off from our respective states. We were so bloody excited to be there and be there together. My brother, my best mate and I with our families would be living our childhood dreams, Disneyland and a white Xmas in the snow! Things we thought would never be available to us ever in our wildest childhood dreams !!

A few days into the trip Brett started to feel quite unwell, this progressively got worse and to the point where he was coughing up blood and felt extremely out of breath. He did keep it quiet from me for the first few days because he didn't want to spoil the trip but once I found out I pulled the big sister card and said to him " Japan will always be here, you are my brother so you need to see a Dr ASAP!" next day Ami took him to a Japanese hospital where he was given antibiotics but after a couple of days they had had no effect, so he was given a different type. These made him violently ill and so was admitted into hospital ( on Xmas day!)  for IV and further tests. He became sicker and sicker to the point that he had developed viral pneumonia and this in turn become such a stress to his heart that it was only functioning at 10%.

At this point he was transferred to Chiba University Hospital a big teaching hospital and one of the best in Japan. He was immediately placed in the coronary critical care unit (ICU) where they administered drugs to assist the heart and also to try and get a handle on the pneumonia that was taking its toll.

As you would appreciate this was becoming a nightmare that was getting worse by the day. On the 6th of Jan 2015 after being so ill for 19 days my brother, my best mate, my constant, suffered a coronary embolism which caused his heart to stop. He was revived, suffered a further attack and the a quick decision was made to place him into a coma.

So there we were in Japan ( not understanding much AT ALL) with my brother in a coma not knowing what was going to happen, whether he would live or die. I remember the day I went into see him for the first time in his coma and I was in such shock at seeing him understandably I was crying and terribly upset. My husband leant over my shoulder and whispered to me ' they say that if you talk to people while in a coma that can hear you, you should talk to him'   Well that was the beginning of a new positive determination. He was going to get well there was no negotiations it was going to happen. I was NOT going to lose my brother.

On the 19th of Jan after a hell of a lot of negotiations with the insurance company ( yes he took out travel insurance, a $126 dollar Woolies travel insurance plan - unlimited) liaising with the magnificent Drs at the The Prince Alfred and the The Prince Charles Hospitals here in Australia, we got the green light to bring him home. In fact I just realised it’s a year ago today that I had to say goodbye to my brother before his Careflight home ( the 19th Jan  ) as we left Japan to come home.  The Dr's didn't know whether he would make the flight, with his only chance of survival being back here in Australia and with a promise I made to him to get him home it was a chance we were all willing to take. His Dr from the Prince Charles hospital rang me one while we were still in Japan to basically ask me whether there was any brain function given he had suffered a heart attack in early Jan. He didn't ask me in so many words ( although I knew that's what he was asking)  but he asked me whether there was any response when we spoke to him. I told him that while I had been talking to him one day he had moved his head to the sound of my voice and that I'd seen a single tear fall down his cheek, I asked the Dr is that a good enough sign? He said yes that's what I needed to hear. That was literally what got the ball rolling to have Brett repatriated back to Australia.

On the 19th of Jan he arrived in Brisbane and was received at the The Prince Charles Hospital. Ami and I had made a pact that we would never leave him alone that if Ami couldn't be by his side that I would be. I said goodbye to my husband and my 2 boys and left home for Brisbane where I stayed with Ami and my nephews and Brett's bedside for 3 weeks. Three weeks of life and death operations. Life support and the removal of blood clots from his lungs and around his heart had us never knowing from one minute to the next whether he would still make it. Like I said I was not going to lose him and so I would sit with him, talk to him endlessly, play his favourite music and on Australia Day I put this biggest Aussie flag up in his room! πŸ‡¦πŸ‡ΊπŸ‡¦πŸ‡ΊπŸ‡¦πŸ‡ΊπŸ‡¦πŸ‡Ί the ICU Dr's and nurses thought it was awesome, we played good Aussie rock that day and they let me stay as long as I wanted.

It was strange I never felt like I was going to lose him, after having lost our Dad and our brother I really never felt like he was going to be next.

On the 7th of February I had to leave to come home and see my boys and my husband. I went in to say goodbye again not knowing,  never really knowing whether he would make it and flew home.

I arrived  home the next day, cause it can take that long to get to Karratha from Brissy ( I'm sure Sam knows all about distances having done it all on his unicycle!!)

Once the plane landed and we could turn our phones on which I did, there was a message from Ami. I was really scared to read it to be honest, so I waited until I was in the airport safely in the arms of my husband and my beautiful boys, I opened the message and it read " Brett's awake!!!!" I literally fell to my knees and cried and cried and cried with my boys around me. I had so many emotions of relief and pure thanks to the Angels that had been watching over us. I couldn't believe the timing at the time but now I know it was because I needed to be home again with my boys without feeling bad for leaving him.

On the 10th they removed his trachy which they had put in a few weeks earlier to replace the intubation tube. So now with all of that removed he could talk- actually it was more of a whisper.

That day received a phone call from one of the beautiful ICU nurses that had been a wonderful support to me during my stay at the hospital and she said to me " would you like to speak to your brother?"  I was so astounded that I could hardly answer but managed to get a yes out. Hearing his voice for the first time since the 5th of January was incredible. My gorgeous husband immediately booked me a flight.

The Dr's, nurses and Ami all knew I was coming but Brett did not. I said to Ami " I don't want give him another bloody heart attack!!" So Ami went in first and said I have someone special here to see you and when I walked in he was facing away from the door looking out of the window. I quietly stepped around to his bed and simply said ' hi my love' and well you can imagine the rest ( sorry guys you're probably in tears as I am writing this).

The first words that came from him were thank you and over and over he said it. I said you don't need to thank me I'm your sister, you're my brother and I would do anything for you, he said I know but you don't understand, you pulled me through, I could hear you talking to me, he said every time I felt like I might slip away you were there holding my hand telling me to be calm and that I would be OK. He said "I can't explain it but you were there". Well that was pretty much the end of us and the onlooking staff there were tears everywhere from everyone.

I know you're story is different but your bond is something I feel very connected  to because of my own experience with my brother.

I guess I really wanted to share another story of a sibling bond that knows no boundaries that will move heaven and earth for each other. I appreciate and understand the love and bond that you both have and it touches me so deeply that you are so honest and open about your beautiful bond. I just want to say my brother and I truly get it.

I know this is an emotional read and I hope it hasn't made you too upset Connie and I hope you didn't mind me sharing our story but I felt like you wouldn't mind?

Wishing you and Sam all the love and positivity and healthy vibes I can muster.

Much love Tan, Brett's big sister

By Alec Marlow-McCarthy 03 Aug, 2016
I’ve got a new word - ‘shuttlefuck’. For example, ‘Today was a complete shuttlefuck’. It describes the kinda days where you chase your tail the whole time. Or get shoved from one thing to another with no time to take pause and calibrate.
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