July is Sarcoma awareness month…and that has prompted me to share some of my families story (a work in progress) memories of who we were both before and after my husband Brendan was diagnosed with Undifferentiated Pleomorphic Sarcoma.
3 Years, 2 Months and 15 days before you go
I doubt I will ever feel more anxious than I did on the day I sat with my husband Brendan in the Clinic at Chris O’Brien Lifehouse. The furniture still looked and smelt fresh and new as we sat quietly, waiting to find out if he had cancer or not. It was nineteen years to the month, maybe even the day … if my memory was better I’d know for sure, from the night we first met. I wonder what we might have said back then if we knew that exactly nineteen years later we would be sitting here, in this brightly lit waiting room, looking at a shaky future after a long and happy relationship, not knowing how we would protect our two gorgeous kids from the horror of what was about to unfold.
22 Years 2 months and 15 days left together
I met Brendan on an unseasonably warm June night, way back in 1995. I was single. He was not. Wearing a blue cashmere crop top, a wonderbra, jeans, a deep golden tan and 4inch heels, I wasn’t looking for love at the time. In fact, I was planning a month-long trek through Peru with a friend and was excited to be heading overseas again. Romance didn’t fit into my plans.
My new leather boots were by far my favourite fashion staple that winter, sporting a half-inch platform under the toe with gorgeous hook and eye lace-ups to mid-calf, they took me to a lofty height of 5’4.” I wasn’t sure at the time if it was my sun-kissed beach to bed hair and green eyes, or a very defined six-pack stomach and those boots that caught Bren’s attention that night. I found out many years later the abs sealed the deal.
Handsome in jeans and a printed voile shirt from Bali falling loosely over his fit, toned body, he had shoulder-length blonde salty hair, kind blue eyes and a killer smile you couldn’t look away from. What I was really attracted to though, was his easy way of being. He loved surfing and drove an old Volkswagen beetle, which cemented the fact that he was the guy for me. He was the whole package and I couldn’t wait to get to know him.
I had never just walked up to a stranger before and introduced myself. Not to someone I was interested in at least, someone I wanted to have a drink with and maybe even take home – to meet my parents. Would he be worth the possibility of rejection I wondered, my heart beating loudly? If I didn’t go up to him and say hello, I’d never know. Encouraged by my friend Vikk, I finished my drink in one quick gulp and walked toward him, confidently.
Easily the best looking guy in the room, he was out with a motley crew of mates who looked like they may have started their night around midday. He was the designated driver and maybe the only other sober person in the room beside me.
Walking toward him, I excused myself as I squeezed through the rowdy crowd. Unaware of the elbow ribbing and nods in my general direction from his mates – he didn’t take his eyes off me. I stopped in front of him, probably a little too close, definitely inside his personal space and took his hand in mine. I shook it as I leaned in to introduce myself. Our bodies were conveniently pressed together by the noisy crowd pushing in to reach the bar when I asked how I knew him. He steadied me by placing his hand on my hip, as another patron pushed passed us. Smiling he told me he was a friend of Graeme’s — a mutual friend I didn’t know we shared.“Come find me later for a dance,” I said, letting go of his hand. “I will.” He said.
We hit the dance floor to Coolio’s Gangstas Paradise, danced with Janet and Michael through Scream and moved out to the balcony to grab some air as Bryan started to sing Have You Ever Really Loved a Woman. Our conversation was easy and flowed. We liked similar things and had coincidently enjoyed many of the same Aussie holiday destinations. We had a lot in common and he was easy to like. I didn’t want the night to end.
Then came the inevitable question, “have you got a girlfriend?” I asked, not sure if I wanted to know the answer. “No.” He said, without hesitation.
The attraction between us was obvious and instant. Last drinks were called as we were leaving. I gave him my number walking toward the taxi stand and he promised to ring as I got into the first cab off the rank, to go home. Not able to help myself, I looked back at him as the taxi drove away from the curb. He was waving, his smile wide. He’s a keeper I thought, smiling to myself, turning back to face the front of the car. I felt a bit like the cat who had just found a canary in her bowl of cream.
A couple of weeks passed before we ran into each other again. We had both turned up to see a band at a popular local venue. I had found out the week before, when he finally rang, that he had a girlfriend after all. His relationship was ending and it was complicated. He apologised for lying on the night we met. I told him over the phone that there was no harm done and that he should take all the time he needed to sort that situation out before he even thought about getting into something else.
Even so, I wasn’t sad to run into him at the band. It gave him the opportunity to tell me his whole story, why he’d wanted to get out of his relationship and what had happened that had finally made him realise it was over, way before he met me. The difficulty was that everyone wanted him to marry this girl but him, him not wanting that had made him pretty unpopular with her family and his.
I remember thinking what a shitty thing he was going through. I didn’t really know him at all, but even I could tell he didn’t want to hurt anyone. Staying in a relationship he’d outgrown was making him really unhappy, but that didn’t seem to matter to anyone but him. He asked if I had his number would I ring him?
I reminded him I had his work number. He hadn’t been hard to find when I wanted to ring and thank him for the 2 dozen roses he had sent me to apologise for not telling me he had a girlfriend. I then told him I wouldn’t be using it while he had a girlfriend.
We parted ways without organising to catch up again — because he had a girlfriend who was planning to marry him, and that had to be sorted out. I let him know I would be out of town for a couple of weeks. I was heading to the Gold Coast to stay with family and await the birth of a new little bub coming into our family. I told him if he were to find himself single anytime in the near future, he should ring me. He rang not long after I returned.
June 13 2014:
19 years Together
We were called into one of the many consultation rooms at Lifehouse Clinic by Sue, she would be our first point of contact for everything relating to Dr Stalley, Bren’s new orthopaedic surgeon.
Dr Stalley was a tallish man, slightly rounded in a grandfatherly way, and friendly. He was a well known and respected doctor in his field and a few years ago had been seen regularly, nationwide, on a reality tv show about the Royal Prince Alfred Hospital in Sydney, called RPA. We were very aware of how lucky we were to have him as Bren’s Doctor. He didn’t beat around the bush. Explaining the disease in a way we could understand, he told us how serious it could be if the tumours came back as malignant after the biopsy, but for us to not get too far ahead of ourselves. He also told us that the spectrum of possibilities for what they thought Bren may have, started at highly treatable.
We stood up to leave as the consultation came to an end as Dr Stalley reached for a tissue, still talking, and handed it to me to wipe the tears that had started to fall. He looked at Brendan and nodded in my direction. “It’s at this point they cry, every time.” He said. He gave me a comforting smile and shook Bren’s hand as we left.
Ten days after the consultation we were heading back to Sydney for the biopsy. I sat behind the wheel of Bren’s mum’s little auto Corolla, ready for the long drive ahead of us. My tight grip and sweaty palms gave away my anxiousness at the thought of driving in the city, and what we might find out while we were there.
There wasn’t a lot of conversation as we drove down the highway, a four-hour trip ahead of us. No-one felt chatty. We were all worried about what the results would be. I just had to not kill us before we got there, driving wasn’t my favourite thing to do. I hated driving. That was Bren’s forte.
It was late afternoon when we pulled into the hotel carpark. Margaret was in her own room next to ours. It would be an early start the next day so we freshened up, went to the pub down the road for dinner and came back to our rooms to settle in for an early night.
My husband wasn’t happy that his mum’s room was right next door, we didn’t get a night away without the kids very often and he was on strict orders from me to be on his best behaviour. That didn’t stop him trying though. Every now and then, after we turned the lights out, he tapped me on the shoulder and said, ‘wanna do it.’ He thought he was hilarious. After the third tap, I got the giggles and ended up laughing till I cried. He loved making me laugh. Eventually, we got to sleep.
We had to be at RPA admittance by 6:30am the morning of his biopsy. An hour and bit after signing in. Bren walked through the door of the waiting room to pre-op with not so much as a slight limp. I think that was the last time I saw him walk like that. I wish I’d known it then. I had always loved the way he moved, strong and graceful. He was athletic and held himself with confidence, but not arrogance. I would never see him move that freely again. If I had realised at the time how big that small moment was, how life-changing this day would be, I’d have been devastated. Cancer is a thief rarely caught.
We wouldn’t see Bren again for several hours.
Groggy and still quite out of it when they rolled him back into his room on the ward, he was saying lot’s of silly things and making us laugh. As the anesthetic wore off he started to feel sore. By late afternoon I could see he was getting a bit sick of having his mum and me fussing over him. He needed to rest, so Margaret and I left him to sleep and went up to King Street for an early dinner.
Bren was discharged the next morning, he was still very sore, but now had a crutch to take a little of the pressure off his leg. We stopped at Macca’s near the hospital to have some breakfast and let the peak hour traffic thin out, and that was when he let us know that things would get worse before they got better. “The doctor said at rounds last night that it does look like it’s nasty.” He said.
No one had said malignant yet, I guess they couldn’t until the biopsy results were ready. But I was starting to understand that nasty probably meant malignant. As Bren shared what Dr Stalley had said, I felt my heart stop and fill with fear in the same instant, and then there was nothing, just numbness. It wasn’t a dramatic moment. It was factual, painful and scary. I wanted it to be a lie, a mistake. He looked at me and asked if I was OK, I said yes, he then asked his mum, and she said yes. I asked him and he said yes. Not one of us was telling the truth. “I’m bent, not broken.” He said, “relax I’m Ok.” I didn’t believe him.
We were now in for one of the longest waits of our lives. It felt like an eternity before we got the call about his biopsy results. Patience didn’t come naturally to me, the waiting was hard. I may have annoyed several people ringing Dr Stalley’s Mosman rooms, at regular intervals and sending an email or two to whoever I could think of that might know something, in that wait time, to try and get his results. I’m unapologetic about that and would do it again. Five minutes would have felt too long to wait. Weeks of waiting was scarier than I could have imagined.
When the results finally came through all I wanted was for them to take them back.