In 2014 my husband was diagnosed with stage 4 melanoma which came as a shock, and we had so many questions at the time. How wasn’t this picked up earlier? Why? Is there treatment? Do we have to set up his will and health directive right away? What can I do? Will I cope? How do we tell others and keep them up to date t and when do we share information
My husband’s journey was swift. He was given 12 months and died ten months later. However, I have to say we ran with life as fast as we could. We were perhaps running from the melanoma, travelling to India, Thailand and New Zealand to see family and friends, making final memories and, most importantly, to my husband, being seen as he wanted to be remembered, not as a sick man.
During a trial at Royal Brisbane and Women’s Hospital, he was fortunate enough to be offered Keytruda, a medicine used to treat melanoma and other cancers. It was successful for a short time, but it couldn’t take full control as the melanoma was too far gone, and he had 15 tumours on the brain, and the melanoma was in his spinal fluid.
I focused on making his life as normal as possible, asking how I could fulfil any final wishes. He told me he had never done karaoke and wanted to die at home. So I arranged a party where he got to perform karaoke and, with the help of Blue Care nurses, asked how I could support him to be at home.
Though fulfilling, it was a testing time as I bathed, fed, and administered his medication as required. Watching changes daily from dementia to no appetite, getting thinner and weaker while I lay by his side, sometimes in silence, other times talking about our holidays and reminiscing.
Through this time, I thought to myself, I want to help others and support them to have loved ones die at home. Allow people to remain partners, parents, and siblings and not be carers, and have those difficult conversations about death and dying. The importance of having a will, advance health care directive, knowing the difference between a Power of Attorney and Enduring Power of Attorney, and–something dear to my heart–sharing that you don’t have to phone and have the body taken away immediately. You can spend time at home saying goodbye, talking to them, bathing them and allowing yourself to grieve. I will also take pride in having public gatherings to normalise death and dying, where people can ask questions and share their experiences.
Since my husband’s death, I have trained as an End of Life Doula and an Assistant in Nursing so I can help others accept dying and death are a part of life for all humans and pets.
Karyn Steele is an End of Life Doula based on the Sunshine Coast, QLD.
For more information about Karyn and her business, Take Time to Prepare, please visit taketimetoprepare.com.au.