even in death there are lists to make

My best friends’ mum is dying of cancer and I am riding my bike up the French Alps and, yes, those things are related.

I visited my best mate recently; not my standard idea of a holiday. She won’t exactly get a great rating on Trip Advisor for the quality of the stay, the entertainment or even the food – I cooked most of it myself. I do think she got one more smile she hadn’t planned on, one more chuckle she thought was gone and a quick flit of time where my best mate in the world got a tiny reprieve.

Life never ceases to surprise and delight. In the midst of this phase of life, I saw some amazing and shocking things that reminded me of the joy and beauty of life. I saw sadness and helplessness, frustration, anger, disappointment and bitterness. I saw a woman stop her car, pick up a wounded bird and take care of it. I saw a sunset out of a plane window that reignited my faith. I needed the jolt I can reassure you.

The only other woman I have ever called Mum has lung cancer and secondary brain tumours. She is in the final stages of her life and her daughter is trying to make that as memorable, pain free and relatively normal a life as she possibly can.

She writes lists my mate, just like me.

On my friends’ list was written the word “End”. She explained that it was a reminder to her to ask the doctor what happens when her mother passes away. You might think it odd to write yourself a note to remind yourself of something so important. I marvel at how she manages to remember to breathe in and out for herself every day, given that she manages every imaginable facet of her mothers’ life right now, including how she breathes. Writing herself lists is quite possibly the only way she does make it through the day; her reminder of what normal is.

I’ve known her and her family for 27 years. We have had the most interesting intertwining lives that any friends could have. We have been quite literally parts of each other’s family for that long. I dated her brother, she dated my cousin, and we even married brothers. I am convinced we only did it so that we could be related, to strengthen a friendship that comes once in a lifetime.

She’s tough, my best mate in the world. Always has been. Endures things far longer than anyone else because she is just made of that and that’s just what you do. You pitch in without being asked to help; you have close personal conversations with your friends’ kids because their parents can’t quite get through to them. You travel vast distances in short periods of time for a party, funeral, or to support friends, family or even someone you once knew.

Our lives have mirrored each other, but we ask that no more. Both our fathers’ died of cancer within years of each other. Whilst marriage to the brothers probably wasn’t one of our finest moments, she did create the most awesome adorable child from hers. I have a lovely wedding day photo album.

My bestie is the eternal optimist, finding the sun shiny bits of life amongst the bleakest coal darkened moments. She cares for everyone, she puts others first. She is without question the funniest human I know. She is sharp witted and intelligent and loves a debate. She is fiercely independent to the point where she hasn’t fully realised that she can accept help however it comes, and she can even ask for it.

I have always had great respect and admiration for her and all that she does. Of course she has made some dubious choices, who hasn’t? Sometimes her choices have been influenced by me and sometimes not. Those influenced by me aren’t always the smartest, but boy have they have given us some wonderful stories! We recently decided that the Child of the Union is Saffron and we are the Ab Fab girls. Mad as cut snakes, hilariously cracking up laughing at our own humour, antics and bad jokes, whilst the Child of the Union asks us not to disturb her as she does her maths homework. The kids’ life is a combination of puberty, divided parenting, step-families; I-pods, books, boys and now death. And she wants to focus on her maths enrichment homework. Admiration and respect for the kid too.

So I temporarily entered the world of the carer. Not for the first time. I watched it from afar when it happened to my own father and when time and distance permitted, popped in there too. (Not nearly enough and a world of growth later acknowledge that I could have done better.)

The carers’ world (for the acute patient) is one where the phone never stops ringing, where you spend your days driving to and from the hospital, doctors visits, appointments for scans or x-rays or medication appointments, or treatment or therapy or a dozen other different things. A world where if you don’t make lists, the tiniest details are forgotten or not done. A world where you have to repeat the same information over and over and over again to all the best intending and well meaning people in the world. A world where you are asked what to do to help, but you can’t give a definitive answer. There is so much to do, what is important, what gets done first, what can be left alone? A world where you cancel appointments, but would never dream of asking someone to cancel theirs.

It’s a world where millions of people live for myriad reasons. My own sibling and his family do it for his son with cerebral palsy. I saw my Mum give up every part of her day, every aspect of her person to care for my Dad. They were partners for life and she stuck to her end of the bargain up until the day she threw his medication across the room in anger, sadness and frustration. That she had worked so hard and cared so much and still was powerless, she still lost him.

My bestie finds her caring rewarding. So does every other carer I know. Of course she is frustrated, angry, upset and sad. She keeps going through it all. My brother and sister-in-law keep going through it all. My mum just kept going. That’s what you do as a carer. It saddens me deeply to know that we live in a world where Governments get a reprieve because of people like these. Collective governments around the world breathe a massive sigh of relief, because these people are being looked after by someone else. The carers’ payment from the Australian government is $7.57 per day. Wow. Been to Coles, Woolworths or Tesco lately? I know what you can get for $7.57 a day.

I’m not a campaigner, or a crusader for unfair treatment. Perhaps I should be. Or maybe I am. Maybe I will crusade for dying with dignity, voluntary euthanasia or fighting the governments for the right for carers to be recognised, acknowledged and supported in our community. My bestie is doing this short term. My brother is in it for the long haul. They both have quite low maintenance models to look after on the grand scale. My bestie enquired about respite care. There are people in this world who come to your home just so you can go out, get some fresh air, sanity and pay your bills. They survive on donations!! There are a few things in the world I classify as just plain wrong; that is one of them.

So, get on with it Sharon!
I made a commitment to ride up some mountains, to raise money and awareness for Macmillan, the cancer carers’ charity here in the UK. Does it help my bestie’s mum or my nephew? Nope. Not directly – and for them, not indirectly either. But the feeling of being useless, unable to help, unable to champion the cause or make the pain go away or get them some fresh air is not easy to shift.

Not everyone can be a carer. I doubt if I could honour that role myself. If you can’t be, then take a meal, do their gardening, take the dog for a walk or to the vet, buy some milk, bread & fresh fruit, do a load of washing, their ironing, make them laugh, sit with them and watch a movie. It doesn’t have to cost money and you don’t have to solve the issue, just give you. Don’t get me wrong, if you can – give money too!

So, when I say it out loud, “I’m riding a bike up a few mountains”, it doesn’t really mean much. I love the idea of challenging myself, don’t get me wrong. I like the idea of doing something for a good cause. I get a massive kick out of the fact that if I do something, someone will be helped. It isn’t the people I know. Some of them I can help and others I can’t. I hear stories about Lance Armstrong raising over $235 million for cancer. What I don’t hear is the impact that has. What did that buy that $235m?

I have a theory. Governments and NGO’s can’t afford to cure cancer; it’s too big an industry. The drugs cost a fortune; companies produce them to make profit. End of story. Take away the need for the drug, remove the need for a cure, and remove all that profitable revenue.

Call me a cynic, and please try and prove me wrong.

I am hauling my ass up a few mountains to raise awareness of these invisible members of our community; carers of others. It is a tiny 310km up a few Alps in France. It will last for 3 days plus a few weeks of training. Training I am fortunate and blessed enough to be able to do and enjoy. I need to raise a minimum of £1800. It will buy definite things. Things I know will help sufferers and their families. If you would like to add your bit of help, please donate here. I’m not curing it. Riding up mountains won’t change cancer, or the number of people who get it, or die from it. It probably won’t even raise awareness. It will make me proud of my own achievement and you proud for doing your bit too in sponsoring me. I’d love to reach my target; I’d love to smash it. I’d love to cure cancer. I’d love carers to be recognised. I’m not even running for Miss Universe, but I can still have these dreams.

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2 thoughts on “even in death there are lists to make

  1. Hey Shaz, not only are you riding up a mountain and doing something you will be proud of… you are inspiring others to stand up and take action and do some small thing to help those as you rightly say “the government breath a sigh of relief” that they don’t have to care for! I hope you ride like the wind and that you reach your target (perhaps my small contribution will help) and more importantly that your bestie and her mum have the time to cherish these times without too much greif and pain. Go climb a mountain gorgeous girl! xS

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