Amid the laughter of Christmas night, with friends and children gathered around the kick starter funded family game “watch ya mouth”. Turning us one by one into characters usually seen in the animations of Wallace and Gromit we learned that it was possible to forget, to laugh and truly enjoy the moment and it was joyous.
The Christmas season was always going to be tough. Not only had the “earthquake” swallowed our imagined futures but also weeks of Christmas planning, shopping, wrapping and decorating. Now it was upon us, along with a flurry of medical appointments to be fitted in before the Christmas shut down. The arrival of relatives spared the usual fanfare of a well considered menu and home cooking, instead replaced with thanks for the emergency child care and Christmas menus and shopping lists hastily divvied up on bits of paper over breakfast.
Evening meetings with specialists on opposite sides of the world, picking out strands of possibility and hope to weave together some sort of future. Locked down tears escaping, overpowered by the kindness of strangers steering us through this strange new landscape as seen from the other side of the desk.
“Everyone is just so nice” is the blessing we repeat again and again. Surprised by the humility and compassion evident in this new health care arena. I wonder if they are always so gentle or if we are receiving special treatment. We’ve adapted quickly to the new role of patient and carer. Sitting quietly in waiting rooms where appointment times pass like carousel horses. Watching, waiting, guessing when your turn will arrive, imagining the stories of those around you, secretly bargaining with their lives against your own. He looks sicker than us, she could be another young victim. They don’t even look up anymore the father son duo wearily accustomed to the game.
The next milestone is reached, all the information is in, the data has been computed and a place on a new trial is available. An experimental treatment with no placebo arm feels like a gift despite the lack of evidence in Mesothelioma. Grasping the hope greedily we hear the echo of advice to “not put off doing the things you have always wanted to do”. A conflict of tying in treatment every 3 weeks for 12 months with school holidays and the opportunity to embed memories of fabulous adventures whilst we still can.
At home we busy ourselves in denial and swing into Christmas, wrapping presents into the early hours, dinner an hour over schedule, chocolate for breakfast and Christmas songs repeating mercilessly like torturous ear-worms.
There have been tears, vapours of melancholy appear abruptly, as if precipitously walking through the ghost of Christmas future. An off-guard gaze swells with tears and at the same moment a hastily written charade is enthusiastically delivered as the “the giraffe of life”. It seems fitting, as joyous laughter peels out from our Christmas posse – that a future Christmas story, a tongue in cheek intra-familial tradition is born and the “Circle of life” continues.
Chemotherapy with Immunotherapy starts January 12th.
If you think this post has value, please like and share with your networks. One of the hardest things we have discovered is that there is so much doom on google for this diagnosis. One of the reasons for writing about our journey with Mesothelioma is for future families facing what we are. So they know there are others on this journey too, facing it with hope, humour and honesty.
Happy New Year – Here’s to 2017. May your force be with you.