Samantha Stynes says friends and family are the key to coping. Picture: Alex Coppel Source: Herald Sun
Sam Stynes shut down the day her husband Jim was diagnosed with cancer in June 2009.
But as reality took hold, the 36-year-old mother of two realised her family’s best chance at survival rested largely with her. she would have to take charge of the children — Matisse, 9, and Tiernan, 5 — of Jim’s care and of the Stynes’ suddenly overwhelming schedule.
As AFL legend Jim has fought a very public battle, Sam has stood resolutely in the background — in her own words: "Finding strength when there is none, fighting, loving, embracing, crying, surviving . . ."
At times the task has been heart-wrenching, at others surprisingly funny and Sam has eventually found family and friends are key.
Here, in extracts from the diary she has been keeping throughout, she lets us in on her own private struggle. —–
I FELT my heart rip. How could I watch Jim go through yet another round of surgery to resect brain tumours? I hardly survived the first; I don’t know how Jim did.
"How long do you expect Jim to be in the post-surgery neurology ward? that ward is seriously the Mad Hatter’s Tea Party." the neurosurgeons laughed. They got it — anyone who has been there gets it, the absurd line between reality and drugged dreams has never been fuzzier than midnight in that ward. Here we go again.
I’ve become familiar with the feeling of everything closing in on me. Sitting in the hospital foyer on the sticky vinyl seat, slumped against a concrete pole, I am feeling battle weary. I need a moment to come to terms with what’s ahead. soon I will have to stop ignoring the constant buzzing of my phone. I need to let our loved ones know the latest. but for now I just want to fade away into the crowd. just a moment longer. Please.
Bled dry, I watch the lady in a pink terry-towelling dressing gown, heavily swollen, strapped-up ankles. Manoeuvring his wheelchair, a man with one leg. a patient in slippers, IV-drip pole in tow. Smokers out front sheltering from the rain. a burn victim with a disfigured face. a young mum being discharged from hospital with her children — they all have huge grins on their faces.
I feel as though I’m sitting on a film set, yet it is all very real. Hospitals are now a permanent fixture in both our lives.
Jim and I have come out from a meeting with neurosurgeon Dr Peter Hwang. He has explained the brain surgery procedure Jim will be having in five days. Our trusted and much-loved neurosurgeon Prof Jeffrey Rosenfeld (director of neurosurgery at the Alfred) is on leave. I’m nervous. It takes 12 years to become a neurosurgeon. Dr Hwang has assured us that in his hands nothing will go wrong. I feel relieved.
Goddamn it, there goes our respite; there goes our much-anticipated three-week beach holiday free from cancer treatments.
In preparation for surgery, Jim is upstairs having blood tests. I’m waiting in the Alfred Hospital foyer hoping that today they can find a vein. Jim’s veins have taken a beating; he feels like a pin cushion. Invasive surgeries and treatment after treatment, he struggles with nurses drawing blood and putting in intravenous lines. To ease the process, the nurses usually use paediatric needles.
Strangely enough I find some comfort sitting here among the melting pot of patients, their families, surgeons, doctors, nurses, staff and students. Everyone here shares an overriding common purpose, which at the end of the day is what
really matters. It’s the very essence of living life itself: people, their health and their wellbeing.
Eighteen months in, as Jim’s primary carer, people constantly comment: "It must be hard on you, Sam. I don’t know how you do it." Who knows? the same way any carer does I guess, finding strength when there is none, fighting, loving, embracing, crying, surviving.
What I find toughest about battling Jim’s cancer is the longevity of the journey. It never lets up. Metastasised melanoma cancer is like the weed in your lawn that keeps recurring, when you least expect it, regardless of how often you try to get rid of it.
Like a weed in theory, sure, but I need to visualise the enemy. What does it look like exactly? I assumed cancer in the body was a hard, round ball like a pea, golf ball or grapefruit, probably because these are sometimes the terms used to describe the cancer’s size; but when I asked a surgeon what cancer actually looks like, he responded: "a grey jelly substance." I hadn’t thought of it like jelly before.
The jelly visual aided my new-found understanding of how difficult it can be to remove cancer surgically. with Jim’s recent brain surgery the associated risks of doing more serious damage to his vision were very real. It’s difficult to remove tumours in the brain when they are growing within the actual brain matter. and while Jim has this uncanny ability to bounce back from surgery and/or treatment, and may physically appear to be doing well, the facts are that there are some long-term side effects that may not be able to be corrected.
Jim grabs any opportunity to get out and live life, to feel connected with the world. One day he seems to be staring death in the face and the next day he is Lazarus! a friend assumed all was well late last year when she saw a picture of Jim at the Myer Christmas parade. she sent a fun reminder message, "bad friend!", teasing me because we hadn’t caught up and I hadn’t returned her messages in some time. that same afternoon Jim ended up in the emergency ward at Cabrini with crippling head pain.
This is not my first long-term association with a loved one battling cancer. My dad, Don Ludbey, was diagnosed with prostate cancer and given a 12-month life expectancy. He battled on for six years before passing. We celebrated his last Christmas six times, which became an ongoing joke that Dad wasn’t really terminally ill, and that he was just stringing us all along for the attention! I discovered then that the somewhat inappropriate or insensitive joking can often soften some of the bumpy ride. It’s clear to me that if you put up a good mental fight against cancer, you’ll increase your chances of winning and long-term survival.
TOWARDS the end of 2010 the longevity of Jim’s fight saw cracks starting to appear in little Matisse and Tiernan’s lives. since the diagnosis we have all been completely focused on fighting the cancer in a desperate pursuit of healing. In hindsight, it put far too much pressure on us as a family when we decided to head to Jakarta in October for Jim to undertake further alternative treatment.
I was supportive yet sceptical. Associate Prof Grant McArthur, our oncologist, remained open-minded about Jim giving it a go as long as it didn’t interfere with the treatment Jim was undergoing. Jim was so determined: no one could have stopped him anyhow.
I was so tired around that time, with huge black circles under my eyes. there was no way I could have up and left with only a few days’ notice. So our family and friends got behind us, disrupted their own busy lives and supported the process. Jim’s business partner, Hugh Ellis, accompanied Jim for the first week, and then I arrived with the kids and my mum, Mary Williamson, in tow.
Looking back on that time I have to laugh. We were like the travelling circus. Jakarta is a bustling, over-populated, traffic-congested, park-less and polluted city. It’s not great to be in a foreign country when you’re seriously ill, let alone Jakarta.
The doctor in Jakarta decided that she would prefer to treat Jim at a so-called beach resort. thus, we travelled five hours out of the CBD over pothole-filled roads.
Dr McArthur had strongly advised us to stay close to an international hospital and the airport in case of an emergency; we were beyond pushing the limits with this one. I felt isolated and scared for Jim’s wellbeing.
For over a week I had to stand by and watch Jim’s weight dropping rapidly and his overall health deteriorate, yet he wanted to believe that the deterioration was only the necessary side effects from the treatment, which was in fact curing him.
I had the almost impossible task of getting him out of there and home while not breaking his headstrong spirit or getting into useless heated arguments, which would only make the situation worse. Couldn’t he see the danger he was subjecting himself to? Couldn’t he see that as much as we would have all loved for the wacky treatment to be a success, that sadly it wasn’t?
Jim was admitted immediately and ended up spending three weeks in hospital and had two tumours removed. Turns out, not to my surprise, that the treatment wasn’t doing any good. his bowel had started to turn in on itself due to one of the tumours and the white-coat doctors were needed.
BOTH the kids had been missing way too much school and any foundation they depended upon that brought them some normality was disappearing.
I was becoming so emotionally and physically exhausted by it all. I struggled with getting the kids organised and off to school. I needed to find more strength. My mum and step-dad picked up the kids for school every morning for the last six weeks of term 4.
My nine-year-old daughter was caught wagging orchestra. she felt she’d fallen sofar behind that she just couldn’t catch up. the school principal was calling, worried and wondering what on earth was going on at home?
Did I have any heart left to rip? Yes. No one turned up for Tiernan’s kinder portfolio presentation. Apparently he was hysterical. He was the only child with no parent present. the reminder for his special event had gone home when I was away overseas on a short work trip and was hidden in the back pocket of Jim’s jeans. the guilt Jim and I felt at this time was horrendous.
It took these events to finally let my girlfriends in fully to help, both practically and emotionally. Initially when someone offered help and assistance, instinctively I would say, "thanks, but no thanks." I have always found it difficult to ask for help. I correlated letting people in too much to losing control of my own life. I knew I had no control over the cancer; little did I know I’d lost control of my life. not letting my girlfriends in no doubt frustrated them, especially when I began to really struggle. It turns out that my mates were patiently waiting on the sidelines, knowing my personality traits and that I’d eventually come running on my terms.
My girlfriends are now a pillar of strength. I honestly don’t know how I would be getting by without them. They drive over to my place at all hours to check I’m OK when Jim is in hospital. They keep themselves in the loop if I’m off the air by calling Mum. They accompany me to the emergency ward, they deliver food parcels and home-cooked meals to our door, they take the kids for fun outings, they offer a kind ear of support for the kids, they are flexible, understanding and patient and they are basically just always there. While the practical help makes the mechanics of life tick over more easily, their emotional support helps me stay centred and sane.
J IM and I, and all those close to us, exist in the ever-familiar cycle of waiting for and worrying about the next MRI and the next PET scan. there is little respite from surgery, stereotactic radiation, chemotherapy, immunotherapy, or of course, with Jim, the next round of alternative treatment. We wait anxiously for the results of MRIs and PET scans to evaluate if the last treatment undertaken has done any good. Along with our oncologist and his team, we then plot our next tactic.
I plot my meal times. I know the menus and opening hours of the various hospital cafeterias. Peter Mac, Cabrini, the Alfred and the Epworth have become in many ways like second homes. I see the familiar faces of other carers who live there with me. sometimes we nod as we pass.
Waiting, then getting the results of the many scans can be particularly scary. In Jim’s case, they usually bring both good and bad news. all at once a couple of tumours may have regressed, another may have been successfully resected, a pre-existing tumour may have recurred and new tumours may have reared their ugly heads. but worst, is the absolute fear of the tumour’s position in the body. Jim and I always hope the tumours are in an area the doctors can actually work with.
That is where we are at. Living like this is completely dominating. sometimes, as you’re hitting your head against the brick wall, momentarily you ponder giving up — then back to fighting.
T HE cancer obviously has a huge effect on our lives, but it impacts greatly on others too. I’ve come to truly grasp that cancer is like the pebble you toss into a pond. It causes ripples that reach people far and wide. the way some people close to us have personally reacted to Jim’s situation has differed in many ways. For instance, there is Jim’s business partner who questioned his own mortality and went about quickly making his dream a reality.
Obviously the emotion and grief associated with losing someone you love is hard enough. Then there’s the added worry about how Jim’s possible death would practically affect and change my life. this is also relevant for those close to Jim who love him too, whose lives are integrated with his and in some ways are dependant upon this integration.
The trials and tribulations throughout the journey — and there have been many — haven’t been easy. Tensions within the family, extended family and close friends have been felt as each individual discovers their own way of coping.
Any crazy human behaviour fuelled by raw emotion and fear has only deepened, strengthened and improved relationships overall — well, mostly. We’ve come out the other side each time but are vastly different people as a consequence. I believe we are all better people for the experience, regardless of the journey being an uncomfortable one.
There isn’t much romanticism associated with Jim’s commitment to his wellbeing with regards to his raw, organic, angiogenesis diet, though. the everyday hiccups and annoying nuances associated with married life still exist. every single time I walk into our kitchen I could just scream. Jim always leaves the entire history over the bench from each of his chopping up of organic fruits and vegetables for his juices. the juicer that needs to be washed four times a day and is lucky to have not been thrown through a window yet. as is the Thermomix, the blender and the humidifier.
Jim has an innate ability to create chaos all over the house with his appliances, resources, manuals, books and supplements, which are for his healing and my unhingeing.
I kicked Jim out of our house once, banished to his parents in the middle of radiation treatment. I know! but his survival is intrinsically dependent on mine, and I needed a time-out. He was taking high doses of steroids to reduce the swelling in his brain. a nasty side effect of the drugs was making him irritable, short-tempered and basically not nice to be around at all. I told him he could come home once he’d curbed his unacceptable behaviour. I felt like Britain’s Supernanny, Jo Frost — I think I even said "assepibul" with her accent.
Over an early-morning breakfast (an intervention breakfast organised by my mates as they thought I had lost too much weight from stress), I distinctly remember the shocked reaction of one girlfriend as she said, "You can’t do that while he’s having treatment for cancer!"
I wouldn’t have had to if he wasn’t having treatment for cancer, I thought.
Regardless of our many personal challenges, along the way there have been lots of laughs.
When Jim was given the all-clear to be taken from recovery to the ward after his recent brain surgery, relief flushed over us. as they began wheeling him out he suddenly began to moan and groan loudly as if he was in excruciating pain. the beautiful recovery nurse, and my friend and I, got such a fright that time froze. Jim’s moans turned into giggling — he was playing the jokester. It took us a couple of seconds to recover and find it amusing, but we are still laughing about it.
T HE love and support we receive from others can at times feel overwhelming. Jim and I are so fortunate to be surrounded by great people committed to continued personal growth and development, but then again that’s a reflection of the type of person Jim is. I could share a million anecdotes of the support we receive from others.
Like when staff at Pacific Early Learning childcare centres held a Gaelic football sports afternoon to raise money for melanoma research to show their love, appreciation and support of Jim. Our dear friends whom we share interests with — whether it be at the Reach Foundation, Melbourne Football Club, Pacific and the kids’ school community — work tirelessly around the clock in good spirits to keep everything ticking along so Jim and I can focus on his healing. Our meditation teacher calls us before and after major surgery to do a cleansing over the phone. Our mates work off a roster to sit with and support Jim throughout his hospital stays. a mate makes playlists and burns the latest-release films to help distract Jim when he’s feeling bored. My girlfriend’s husband is constantly sent over on a moment’s notice with dinners in an elaborate wicker basket — mr "little Red Riding Hood".
Freshly baked sourdough bread from Jim’s favourite bakery is dropped on our doorstep. Matisse’s teacher took her shopping for her Brownlow dress. My step dad does all the jobs around the house usually reserved for Jim. Chippy, Farla and Flynn, Jim’s closest mad Irish mates, flew out from Ireland to come and visit the big guy. We constantly receive well wishes, letters and books. the heartfelt warmth is so greatly appreciated.
Our super-busy oncologist visited Jim for an hour in Epworth Rehabilitation last week, simply to help lift back up his fighting spirit after his eyesight was damaged further.
Freedom has been stripped away from Jim and me, yet in its place are top-quality human relationships that have further enriched our happiness and added so much to our enjoyment of life. most importantly it is these relationships that are an essential part of Jim’s inner peace and healing.
The most poignant thing that has been said to me on this journey was by Dr Graeme Southwick. Dr Southwick and Jim have known each other since Jim’s football playing days. Dr Southwick, a talented plastic surgeon, had stitched up Jim’s playing wounds on several occasions. Jim decided to ask Dr Southwick for a second opinion about the protruding lump on his back. After Dr Southwick had removed the lump, sent it to pathology and had the results of the PET scan, he then had the onerous task of delivering the initial horrible diagnosis after sitting on the news for the entire weekend feeling sick about what he’d discovered.
Dr Southwick said: "In this life we all have one thing in common. We are all going to die. if you are lucky enough to get the heads-up that your time may be looming, you fight tooth-and-nail to hang around for as long as you can."
Jim’s tooth-and-nail fight to live is continuing to enrich the quality of his life. While I’ve told him he’s turned out to be a bit of a dud as a husband, I too am so genuinely appreciative of the personal growth, wisdom and happy times the journey brings with it. and just maybe that’s what life is really about.
<a href="http://www.heraldsun.com.au/ipad/how-sam-stynes-took-back-control/story-fn6bn9st-1226000473006tag:news.google.com,2005:cluster=http://www.heraldsun.com.au/ipad/how-sam-stynes-took-back-control/story-fn6bn9st-1226000473006Fri, 04 Feb 2011 13:18:32 GMT 00:00″>How Sam Stynes took control