The picture was taken a few weeks ago when mum was in hospital the first time. It was the morning she brightened up, and JD was being flown to the Riverland. Unknown to us he was to come to the same hospital as mum - Waikerie. We ladies were sitting having a chat together and we hear ‘What’s going on here?’ to turn around and find JD on the stretcher in the door way. We had a few lovely hours together, we found the humour in it all, laughed and talked loudly, and I think the hospital staff thought we were all a bit mad. JD is still there, waiting for a bed to become available in Berri so he can start his rehab. Fun times!
This week, there is only a blog, not the spoken podcast. When you read it, I know you will understand why. Thank you.
Tonight I’m Gonna Cry
Life can be overwhelming.
It’s 3am and I’ve barely slept a wink since I laid down 6 hours ago. The events of the last 10 weeks are jumping around in my ‘monkey’ brain.
On August 6th my big brother JD and his motor bike collided with a car in the sunshine of an early spring day. He smashed almost every major bone on the right side of his body and many others, including his 8 week old knee replacement (which was actually on the road when they picked him up). He ruptured his bladder. Thankfully, he didn’t smash his head, which is why his injuries weren’t immediately life threatening, but we knew straight away there would be many long months ahead of immobilisation, extensive surgeries, and a long rehabilitation period.
He wasn’t up to visitors, and I wasn’t feeling all that well at the time, so we decided to postpone a visit for a few weeks (we live 10 hours apart). As he had operation after operation, the family grapevine kept us informed. For nearly two weeks, every time he went into theatre, we weren’t sure if he would come out missing his right leg. Two months later, it looks like the leg is staying on!
There were some tears, but I had a lot of peace during those early weeks. He was in great hands, the family had rallied and there wasn’t much else to be done by me just yet, but wait to hear how he was doing and visit as soon as I could.
Over that time mum’s dementia deteriorated to the point of some days being unable to cut her food or use the toilet on her own, and then she took ill and ended up in hospital. I was able to arrange a flight over and during the days leading up to my visit, a place became available in the highest level care (nursing home) and some decisions needed to be made.
When my sister and I arrived we visited JD in Royal Adelaide Hospital and he was in good spirits, despite still not being able to move on his own, and he was looking forward to being transferred back to the Riverland hospital, waiting out the next couple of months of healing until rehab can start. We had some good family time with him and Jenny and let some emotions out together. We then visited mum in the Riverland to find her curled up in a ball in bed –we thought she had pretty much given up, and we wondered if she would make it through the night.
In the early morning three grown women shed tears around the kitchen table for our mum.
Then with chins up, we headed back into the hospital where we found her sitting in a chair, brighter and although still very confused, she obviously had a new lease on staying alive a while longer. More tears flowed, and as the decisions were made to move her into the higher level care, our empathy was highlighted for Auntie Marj (mum’s 90 year old sister) who had moved two years ago to spend her last years with mum, caring for each other just as they had as children. They would have to be separated, at least for a time until a bed became available for Marj. Hard decisions – more tears threatened, but together we knew we had to do the best for both of them, even if it didn’t feel like it at the time.
So mum was moved and Auntie Marj pined.
During these weeks, I had some routine blood tests done to see why I was feeling a bit low. I’d been working, touring and farming during this time, and was pretty exhausted from all the extra things going on, and when the initial blood tests showed some abnormalities, I wasn’t too worried.
My ESR (inflammation marker) was high – it had been that way since the stressful time of the Black Saturday fires 8 years ago, and I’d had operations on my knee and hip. The doctors thought these things seemed to account for the high level.
But my new doctor (Dr. Jenny) wasn’t satisfied to leave it at that, so she ordered some more tests.
Then more tests. A referral was needed to a specialist because I have an abnormal protein in my blood. It should not be there.
In early September the haematologist informed me I had a problem and more tests were ordered and I was all ‘business like’ about it. It wasn’t until I got outside after the appointment that I had a ‘holy crap’ moment.
I’d just been told I had cancer.
Tears flowed – again. I was on my own that day, but David was only a phone call away, so the car park was my safe place for the half hour or so it took to gather myself and head for the newly ordered scans and blood tests.
I was pretty pragmatic about it as until the next lot of test results were in, there wasn’t any more information and no decisions needed to be made. For the next two weeks we headed outback 7 hours west of Cairns and had a great time doing what we do best. It was in the back of my mind all this time of course, but we didn’t tell anyone else as we didn’t want them to worry.
Then came today – specialist time again and I have confirmed a rare form of Lymphoma – a blood cancer starting in the bone marrow. A mutation of my DNA.
As yet there is no cure. It can’t be cut out, irradiated or otherwise removed. Chemo therapy is the only current western medicine treatment available. I’m going to have Lymphoma for the rest of my life - and things will have to change to manage it. As the specialist said ‘It will kill you, if something else doesn’t get you first!’. Awesome news!
David was with me and this time our tears flowed freely together in the car park. We felt no shame in letting it out.
With our hearts beating wildly, we stopped on the way home from the specialist and told some of our family. More tears. Others will be told over the next few days. No-one can do anything, but this is time for family to be together as we think through what’s going to be needed.
This is not an immediate death sentence. It is not an acute aggressive cancer. My body might be able to keep it in check, or it might escalate and then I’m in real trouble. Only time and regular three monthly testing will tell.
But it makes us face our own mortality and that’s scary. The unknown seems harder somehow. Dreaming and planning for the future take on new meaning.
As the news really started to settle in as the day moved on, we started to face our grief.
Our lives will have to be rearranged. We both love what we do and much travel has been a huge part of each year. Our schedule is often crazy. If I’m to manage this and stay as healthy as possible, things will have to change. David will probably have to get a second job. I will need to have a lot more rest. Illness doesn’t come cheap.
As afternoon turned into evening, my beautiful man wept on his knees – vulnerable to the fear of losing me prematurely, and reassuring me that he loves me and that we will face this challenge together.
Sitting together on the couch, tissue box in hand, we receive another phone call. Mum has fallen and broken her hip and will have to be flown from the Riverland to Royal Adelaide hospital first thing in the morning to fix it. She’s in pain and she will be scared. And more decisions for her on going care will have to be made.
Amidst all this two of our immediate family have been sick for weeks with whooping cough, and David and I have caught a common cold! We have had a #1 hit on the national country music charts for three weeks so far and we won Independent Duo of the Year.
The last 10 weeks have been gruelling. Some times in life are.
At 3.30am my eyes are swollen, my nose is sore, I feel nauseated and scared. I’m dehydrated and exhausted. David has finally gone to sleep, his pillow wet. In his sleep he reaches out his hand to me – a show of solidarity.
I know that I am loved and that I love back with all my heart – but tonight I feel very alone.
As I try to calm my ‘monkey brain’, I know I will rise to the challenges ahead. I know that I will find the way forward – starting with gratitude for all the wonderful people and things I have in my life. For the early detection which allows management to start right now before the cancer is too advanced. I will take the opportunity to seek alternative treatments and get myself educated.
I look forward to being able to help others through times like these, because I know…
I know there is the certainty of uncertainty. I know there will be more grief to work through. I know these times raise so many big life questions and that we may not find the answers.
I also know that I must grab all of life and experience its fullness and mindfully hold onto my happiness…
It’s 4am and I still haven’t slept a wink. More tears roll down my face as I type – emotions rising and falling, questions coming and going, prayers for my mother being raised, prayers for my family, prayers for myself.
I find comfort in the quiet darkness of these early hours.
It will be morning soon, and I will get up and get on with the business of living. Another doctor appointment, more difficult conversations, the house to be cleaned, and bills to be paid, animals to be cuddled and a couch to be laid on.
But tonight… I’m gonna cry.
Merelyn’s writing is supported in part by the sale of her books. Autobiography - ‘The Deepest Part of Me’. ‘Inspire’ – inspirational reflections for your life’s journey. ‘Stories behind the Songs’ and her first children’s picture book ‘To The Moon and Back - Grandma’s Rocket Ship Adventure’. To find out more about her work and to support her through the purchase of her writings and music, please go to www.carterandcarter.com.au