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F_ _ K Brain Cancer

fk cancer

Ryan gave the middle finger to cancer by facing his death and funeral plans consciously.

Dying is a whole person, and potentially a whole of community endeavour, that draws on all of our resources and capacity.  It is hard AND it is sacred.  Our families and community provide sacred witness.

As an end-of-life consultant and holistic funeral director, sometimes I have the privilege of working with a family for the full journey of dying, death and funeral.  It is indeed sacred work.  And sometimes, in my grief counselling work, I can support families beyond the death and funeral, continuing to caretake them through grief and the ongoing commemorating and integrating profound loss and allowing life and love to go on.  

One such family was Ryan and Belinda.

The family had time to decorate Ryan’s coffin (language warning), Photo credit: Sarah Tolmie Community Funeral Director Sydney, Central Coast & Newcastle.

Ryan did all he could to treat and survive his super rare brain cancer and up until only a few months before his death, he was doing remarkably well. It was only in the last months that Ryan slowly began his receding from life. There were small losses each week in capacity and strength and yet his spirit was strong. His love was strong. His acceptance was amazing.

When I met with Ryan and Belinda, a couple of months before Ryan’s death, we sat together and had one of his famous coffees.  He shared with me his current cravings for fried chicken.  We found common ground being both of 1971 vintage. We laughed, we cried and we discussed the inevitable day of his death and plans for his funeral. 

For every individual and every family, an End-of-Life Plan and Funeral Plan is different and unique. It is informed by the family landscape, history and culture, the nature of the illness and death, and the life lived and loved, and the specific wishes and needs of the person.  It first begins with a conversation which can cover a range of different topics of importance – from practical, to familial, to logistical, to financial, and to the spiritual needs and desires.

Brain cancer is cruel.  Ryan knew he could not put off these conversations and plannings.  He wanted to take control and demystify the process of death and dying not only for him, but for his family. It gave him peace of mind to know his wife Belinda had preparation and support as much as it assisted his wife Belinda to know what to do.

The benefit of doing an end-of-life plan with Sarah was how personal it was and also that Ryan could be involved in the decision making. As Ryan’s cancer made him immobile, Sarah came to our house and sat with us and talked us through the options,” said Belinda. 

Ryan and Belinda shared with me their love story. Ryan shared some of his life highlights. His family and work and travel history. We discussed his philosophy on life and love and death.  He shared with me his growing Spotify list of ‘death songs’.

For a young husband and father, it was important for Ryan to be at home and ideally, die at home.  His wife Belinda and their two young children Mackenzie and Caleb, as well as his older daughter Evie from a previous marriage, were committed to achieving that outcome for him.  It was not only a ‘whole-family approach’, the family also had support from the home Palliative Care services and a wider crew of family and friends.  

In our plans we also talked about Ryan’s funeral and his legacy.  It was clear Ryan did not want his family to dwell on his death, but rather Ryan wanted his community to gather in gratitude, celebration thanksgiving of his life.  

We decided that we would space out a community memorial service to be held a few weeks after the death and conduct a private ‘first farewell’ – a home funeral.  This involved myself helping Belinda to continue to attend to Ryan’s care, as well as caretaking the family through the first shock and gentling Ryan’s eventual departure at the home with a supportive ritual.  

As the weeks and days ran down towards Ryan’s death, Belinda and I had intermittent phone contact.  Belinda’s brother was a paramedic and his close monitoring and support was also an invaluable reassurance.  In the wee hours of a Wednesday morning, Ryan took his last breath, at home, in bed with Belinda, with kids quietly sleeping. 

One important piece of advice I give my families is when an expected death occurs at home, is, ‘don’t rush and react’ afterwards into any big actions. Stay still and quiet and breathe and stay with your loved one.  There is no need to ring the ambulance. Lay your loved one peacefully. Lay down next to them. Or put the kettle on. Call your immediate family circle, or key person, or a friend if you need when you are ready. For Belinda, she lay down next to Ryan, and miraculously, got a bit of sleep before the sun came up.

It was a heart-heavy, raw and tender morning as the rest of us awakened to a new reality. Ryan had died.  Gosh, death is just the most profound mystery. The family dog Gryff, usually a rambunctious pup, was also instinctively subdued and loving.  A gentle tender hush and hum was emanating from the home when I arrived with the cooling plate

Belinda and I cared for Ryan and dressed him his BJJ ghi (Brazilian jui jitsu fighting robe).  We briefly contemplated putting him in his motorcycle riding leathers and soon realised it would be an almost impossible task, they were so body hugging tight. And ultimately, too hard to part with. 

There is something incredibly natural and calm about a home vigil. It doesn’t take long for those involved to acclimatise and relax into the space. Belinda and Ryan’s children wandered in and out of the room over the course of the day and found surprise in the comfort to know dad was still there. Gryff, the dog, attentively padded around the gathering giving nudges, licks and leaning in for lovings. Close friends gathered around the family in a gentle, familiar and comforting presence.

Even the delivery of the ‘daisybox’ cardboard coffin was taken in their stride, and as I left, the family and a few friends were settling into an evening of a few drinks – Ryan loved a good wine – as they decorated his coffin.

The gift of having that time at home and slowing things down to allow time to attend to Ryan, was enormous. 

After Ryan died at home having the time to keep him home and care for him was the best thing for our family. It gave us all time to say goodbye and it fit in with our belief that death is a part of life and should not be hidden away. It was a privilege and an honour to be able to care for my husband in that way with Sarah’s help. I also believe it was the best thing for our children (who were 11 and 13 at the time of his death) to be involved and be able to farewell their dad in a personal, intimate way being at home,” said Belinda

By the next day it felt the right time to farewell Ryan. 

Sometimes a home funeral requires a bit of DIY ingenuity and problem solving. The coffin was too large to easily carry and manoeuvre out of the house WITH Ryan inside it. We had to place the coffin in the yard first and Belinda’s brother and his paramedic buddies carefully, and with great love and reverence, carried Ryan outside to the coffin in his garden. With the sun shining on him and a small circle of family and very close friends gathered, we gave Ryan sacred witness, testimony and gentle farewell.

A few weeks later, we were fortunate that the COVID funeral restrictions were lifting, enabling a return to gatherings of 100+ mourners outdoors.  It was perfectly timed for our plan to celebrate Ryan on the property of Belinda’s parents in property. 

It was a gorgeous sunny crisp August day.  Our memorial service was a rich full service of tributes livestreamed for his family and friends in Canada, the UK and around the world.  We even had a beer and pizza van.

Looking back what really helped was Sarah! We felt so lucky to have found Sarah and Picaluna and the service they provide to do death differently. Sarah effortlessly took care of everything for both the home funeral and the celebration of life. It is such an intense, difficult time and having Sarah to help with decisions and just get stuff done in her calm, soothing way was exactly what we needed,” said Belinda.

In an excerpt from his memorial ceremony, which I officiated as celebrant, I made sure to honour Ryan’s wish – to celebrate and give thanks.

Today…..we remember Ryan for who he was……husband, dad, son, brother, workmate, a BJJ weapon…..a master hugger……motorbike riding dude.

We will remember Ryan for how he was…..kind, happy, patient, hilarious, gentle, tall, knowledgeable, optimistic, brave and fearless.

We remember Ryan for the legacy he leaves…..so much love, so many amazing memories of life & love with Belinda, his kids Evie, Mackenzie and Caleb…..and all of you.

Today, we give thanks for how he has joined this community together, a community now, forever intimately and tenderly joined by loss, but essentially, joined by love.

Ryan made us laugh. He gave the best hugs. He was king of the toastie and always had the latest gadgets.  He believed life was made better by coffee and riding motorbikes. He was a lover not a fighter (even though he could be a BJJ lethal weapon), instead his superpowers were kindness, patience, good humour, fairness, optimism, trustworthiness and love. He was the best husband and dad and all-round good bloke.

Vale Ryan. 

By Sarah Tolmie, Community Funeral Director, Holistic Celebrant and End-of-Life Consultant.

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