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Sam & Nikki's story: The difference of care
Friends Sam Burge and Nikki Shar both have cancer experiences. Sam was diagnosed with breast cancer and had the support of a McGrath Cancer Care Nurse, while Nikki nursed her husband through cancer alone.
Sam, 35, was living in Melbourne when she was diagnosed with breast cancer at 33. She came back to Sydney for treatment, to be supported by her family and McGrath Cancer Care Nurse Elaine Arnold. Nikki cared for her partner Mike until he died from cancer. She felt lost in the hospital system without a McGrath Cancer Care Nurse. Sam and Nikki, 41, host the The Big C, a podcast that explores the unspoken topics surrounding cancer and caregiving
“I had so many questions all the time, and Elaine was there whenever I needed her.”
- Sam
Sam's story
Sam thought her breast was just getting stuck to her bra after exercise, she didn’t realise her nipple discharge was a sign of breast cancer.
Immediately after Sam’s diagnosis her dad flew to Melbourne with two empty suitcases, packed up her life and took her home to Sydney so she had family support during treatment, which included fertility preservation, a double mastectomy, chemotherapy and radiation.
She met her McGrath Cancer Care Nurse Elaine Arnold at her first chemotherapy session, but they had already connected over the phone.
“It was on straight away, there were lots of text messages back and forth,” Sam says.
Sam has moved back to Melbourne, but she is still in touch with Elaine. “I messaged her when it was International Nurses Day, she listens to the podcast. She’s still there if I need her,” Sam says.
“I can’t imagine what my treatment would have been like without her. She was my safety net. At times it was challenging to know who to call if I had any issues –hospital, emergency department or oncologist – but I knew that I could always call Elaine.”
Nikki's story
Nikki was 34 and her partner Mike was 30 when he was diagnosed with osteosarcoma, a rare cancer that usually occurs in children.
“From the start, we were lost in the healthcare system. There was an oncology nurse who had such good intentions, but they talked more about the medical treatment regime and hardly ever about the other support that could be accessed or that we might need,” Nikki says.
“Not once in a hospital setting did anyone ask me how I was doing. As a caregiver, you pour everything into the person you’re caring for, you don’t think about your wellbeing, but on reflection I feel that a caregiver needs to be given that support as well.
“I was super alone in the whole situation, but I didn’t ask the hospital for support. I felt guilty, they should concentrate on patients, why should I be asking for resources?”
Nikki says it was “one of the loneliest times of my life.”
There was no-one to support her as she supported Mike. Having a McGrath Cancer Care Nurse would have made “the world of difference.”
“It would’ve made me feel less alone and given both of us that ability to contact the same person each time, someone who knew you, your history, your family dynamics and they could direct you in terms of resources or be a listening ear,” Nikki says.
“For Mike, it would’ve been him knowing he had someone he could contact when he was feeling different emotions or getting reactions to drugs. We’d sit there wondering if we needed to get to emergency, knowing you could pick up the phone and hear a calming voice telling you what to do would make a world of difference in that situation.
“From a caregiver point of view, even to be asked how I’m doing and what I needed would have helped. For years after Mike passed away I had nightmares that I hadn’t done enough, I needed another person putting their hand on my shoulder and saying it’s OK.”
“It wouldn’t have changed the outcome, but what we went through over those years could’ve been easier if we had that hand on our shoulder.”
- Nikki
Care for all cancers
Nikki believes it’s unfair that different cancers have different levels of support and she’s excited the McGrath Foundation now supports people going through all types of cancer.
“Hearing Sam talk about her relationship with Elaine and that support she received, I know for a fact it would’ve made so much of a difference to Mike and myself. It wouldn’t have changed the outcome, but what we went through over those years could’ve been easier if we had that hand on our shoulder, knowing that somebody gets it and was there to help us,” she says.
“There were times when Sam would’ve really spiraled if she didn’t have Elaine, but Elaine was able to pick up on those because she knew her, there was continuity of care. It’s a very special thing Sam had with Elaine, that relationship can make such a difference.
“To get McGrath Cancer Care Nurses out to everyone with cancer would be amazing. All cancers need the same support. I’m so grateful this service is beginning for all cancers and just wish it was there when Mike was diagnosed. Hopefully nobody should have to go through what we did of feeling so alone with it all.”
Vanessa Kostrz was diagnosed with breast cancer just 18 months after an anal cancer diagnosis. With back-to-back cancers, she knows the difference a McGrath Cancer Care Nurse makes.
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