“Mark sees death as a normal thing and he has said this all the way along. He tells me ‘that people need to know that it is normal and happens to everyone, and it's ok.’”
“His attitude has definitely made a huge difference to how we are coping with his most recent diagnosis. He is very pragmatic about it all. This is life, he says.”
“Mark has bowel cancer that has gone to the liver. He first got cancer at 27, then at 32, in his fifties, and now again at 69. Each time it has been a separate primary cancer, yet in true Mark spirit, he says, “No, I haven’t had bad luck. Despite all these cancers, I am still here.”
Meet Sara. She came across Violet when she googled grief and carer support services after realising she needed additional support to help her with her husband’s terminal diagnosis.
Despite Sara’s many years of experience in running support services and advocating for various people in need, when it came to her situation, she realised she needed help in unpacking what to do next and she needed to know she would be in good hands.
“There are many care organisations out there, all offering support services. Most only offer group phone support and there were often issues with calls cutting out. Also depending on where you were on the carer's journey, you were sometimes hearing stories of people whose loved one was close to dying. It made it especially confronting if you weren’t ready to deal with what lies ahead,” she said.
“With Violet, I looked up the Board members to get an idea of the organisation and the calibre of its people before I reached out for help. It may sound bizarre but having been a Board member for the past 14 years, I wanted to be sure I was dealing with an organisation that had the credentials to be able to properly support me.”
Sara came to Violet having already experienced the death of loved ones. Some in peaceful ways, and others, in the case of her mother’s terminal illness, Sara’s experience was very traumatic and it took several years and the help of a grief counsellor to improve her mental health and well-being. So with Mark’s diagnosis, she knew she would need extra support.
This time around with his terminal diagnosis, Sara was insistent that they address all the administrative tasks that can become burdensome and more triggering to do later down the track if not addressed. This included writing up a will, having a Power of Attorney in place, and working through an advance care plan.
“Amanda was amazing. I looked forward to talking to her. She really connected with me. It was very personal and not what I expected. It ended up being a chat and that was good,” said Sara.
“Amanda gave me tips on what to do and sent me follow-up emails with further information after our one-on-one phone calls.”
“Mark is pleased that I am being organised. It takes a weight off him that I have an additional support network around me.
“We are now at the point where Mark is in/out of the hospital. While I can deal with the physical decline, I am struggling with his mental decline.
“With Amanda’s guidance, we devised a system to help me keep on top of all the rapid changes. It’s easy to become muddle-headed. Has he had his medication, does he have everything he needs, food, comfort, etc. So I now have notebooks with all the information noted and a pinboard with the emergency numbers.”
Violet Guide Amanda was able to support Sara in determining what kinds of things they could ask his medical team so that the answers were clear to everyone. Given his declining health, Amanda encouraged Sara to make the most of her time with her husband Mark and create new memories with him.
“Sara was 23 when she married Mark, so that is a whole lot of living they have together. I suggested revisiting beautiful moments and fun times and to talk about the things that gave him pleasure and recording these stories,” said Amanda.
“Sara has been so strong and amazing throughout this and she understands the need to be flexible in how she provides support for Mark. Knowing what her husband’s wishes are and knowing that they can change at any moment, allowed the space needed for acceptance to bloom.”
* *. *
*Sadly Mark died on 11 October 2022, one week after this interview. We extend our deepest sympathy to his wife Sara and their daughters, extended family and friends and thank them for graciously allowing us to share their story.