You can tell a lot about a family by looking at the outside of their fridge.
If you sat in our kitchen and watched our refrigerator, you be privy too a flurry of activity throughout the day. Doors opening and closing fifty odd times, and as the daylight changes in the kitchen you would see the buttery finger smudges of little hands on the door or some splashes of yoghurt on the handle.
Up high on the doors you will find numerous fridge magnets, the latest bills, an assortment of pictures covering children’s firsts, kindergarten mug shots, photos of cousins playing in mud. There are newspaper clippings of past athletic results and ribbons from running club, name badges from previous employers, a train ticket from our wedding day. There is a reminder to have the dogs vaccinated. A discount voucher from the video store, the latest party invitations and postcards from far away places. All of this interspersed with children’s art and placed up high so a certain little human cannot grab it to experience the fun of ripping it all up into thousands of pieces.
Currently buried amongst all these family trinkets sit two medical imaging slips. Fastened to the fridge with a magnet which is the front half of a cow from a Leap Frog children’s toy. An order for a CT Scan and a chest Xray slip sit patiently. Both were written up by my very thorough GP and have been hanging there now for nearly three weeks. Just. Sitting. There. Under the magnetic half of a plastic cow.
In the week leading up to Christmas I developed an annoying cough and although not too serious or too annoying, I noticed changes to my breathing. Which is at times laboured and I have experienced a bit of dizziness on occasion. The cough began as an involuntary response when I inhaled. And this coughing has stayed with me for just short of two months and is at times annoying. But not too annoying. There has also been some subtle abdominal pain. And there is the relentless fatigue that I have on some days, and a nausea that prevents me from eating at times and this comes and goes.
For I wish that I could take my mind back to a time when I could be just a little bit sick. But not too sick. And the cause would always be something so simple. So simple and so benign that I wouldnt require lengthy and expensive tests at hospital, which potentially fill my body with more radiation or nuclear material or contrast. I wish I never had to experience any more ‘scanxiety’.
But gone are these innocent days when all I had to worry about was a simple sniffle or the flu, or back pain from poor posture or a bout of gastro.
Once you are diagnosed with cancer, the notion of being only ‘a little bit sick’ is forever lost. The perspective of just having an ‘innocent illness’ is gone. You are never again able to live truly free of the fear of this crappy disease coming back.
So this loss is lamented.
Now a perfectly sane and healthy person, would just go and have the tests. Or would have rung their radiotherapist or oncologist by now. But once you have been through a barrage of cancer treatment, it’s easier to just stick your head in the sand.
This is the hand and the sand that post treatment cancer patients face. The dilemma of having symptoms, and more testing and then the ‘scanxiety’ that follows when waiting for results.
And when a young, vivacious, fellow, early breast cancer survivor with very good prognosis, is found to devastatingly have their cancer progress to stage four this week it just feeds this cycle of worry. And then the Dread Dragon returns for a visit.
Of course, there are loads of logical explanations for the cough I have. One being my lungs were probably burnt in radiation and there might be some inflammation. Which might heal with time, or there might be scar tissue developing. And if so, I should go and have some tests to determine the cause.
Perfectly reasonable explanations.
Another, the air is dusty at the moment and lots of people are complaining of sinus issues, and that might be causing me to cough.
Here’s another, I might be developing asthma.
And another, I am simply a “Cancerchondriac” and it will go away and I will forget about it.
Or this one. There might be cancer in my lungs.
Of course, tests would certainly put my mind at ease. But this week, I’d still rather not know. So I’ll wait till my one year appointment with my surgeon in nine days, and then see my oncologist a few days after that. And I will see what they say.
And then I will find out if I am in fact just a little bit sick, but not very.
Oh, and I better get the dogs vaccinated.
January the 18th was an awesome day for so many reasons. Twelve months on (and ten months of breast cancer treatment between), I went back and completed my second sprint distance triathlon. The first was done a week after diagnosis and marked the beginnings of me entering the fray of the disease blog genre when I published this post.
Three hundred and sixty five days ago I was filled with the terror of cancer and what was to lay ahead for me. When I made my way into the river for the triathlon start, all of the cancer related anxiety disappeared. I checked out of Cancerland and tuned into the sights and sounds around me in the immediate moment. It was sunset, there were hundreds of heads and arms thrashing about ahead of me so I waited at the back of the swim pack to compose myself. There were large rivergums on the banks and the sun dappled through their branches, there were sulphur crested cockatoos and galahs screeching at each from the treetops. Through my goggles I could just make out the Port of Echuca Wharf in the distance.
I recall the exhilaration of commencing movement through the tea coloured water, of seeing air bubbles emerge from my mouth, stick to my face and be pushed away with the momentum of swimming. Of seeing arms and legs thrashing and churning through the water. The thrill of turning the large meander bend in the river and swimming within metres of paddles steamers. Of being pushed along by the current of the ancient river towards something great. The sensation of fine river sediments squishing between toes as I stood to make my way up the hill to the bike transition. I was alive and the Dread Dragon from the previous week had finally taken a nap and didn’t return for a couple of days. My family and friends were there to encourage and support me. I wondered if I would ever do anything like it ever again. I would have to wait a long time to see.
Two days later, the Dread Dragon returned and breathed fireballs at everything that mattered to me in my life. Struggling to sleep and eat from the fear of the unknown, the long road ahead of cancer treatment ate away at me. Mr Cool took me off to my local hospital, anorexic from my short dalliance with the anti-depressant medication my doctor had tried to help me with a week earlier, nauseated and with heart palpitations from the sheer anxiety and terror of being a newbie to the world of cancer. The waiting for results had began.
After finishing ten months of treatment and giving my radiation burns time to heal I decided to return to this event. In November, once treatment was complete, I took off like a rocket and tried to train as I once had, six times a week. But it was too soon and too much for my chemo and surgically depleted hemoglobin. I was falling into bed at 7:30pm and was unable to wake in the mornings. So I dropped the training back to three sessions a week and that seemed to be enough to help lift my treatment fatigue. I almost gave up on the idea of returning to the same triathlon. For weeks it just seemed unachievable and unrealistic.
But in mid December I decided to have another go at reaching the goal and I started training more frequently again. I wasn’t waiting any longer. My goal was just to go back and finish it again, 700 metres swim, 20 km’s on the bike and a 5 km run and feel comfortable in myself through the process.
I’m glad I didn’t give up on this idea. I’m glad I didn’t wait.
This time, there was much less fear about doing the actual triathlon even though I had a lot less fitness. Having completed it before helped, but there was something about what I have been through in 2013 has made me a bit tougher with respect to challenges. A bit more of a go getter. Some people suggested I should wait. Wait till my body had recovered more. But there is no time to waste. Why should I wait to be ready to exercise? To train? What was I supposed to wait for? What was I fearful of? Getting better? Getting past cancer? Getting on with living?
I’ve put off many things in my life thinking there would be a more appropriate time down the track to start working towards something. I’ve made loads of excuses. I sat and waited. The years rolled on by, and I was still waiting. But I’ve learnt this year that the best time to start is NOW. Not when I think I look more respectable in lycra or am fitter, or have faster times or feel more comfortable while running. But to just jump in and have a go. Just drop the fears and the inhibitions that hold us back. I’m not going to be the Mum who sits on the side of the pool anymore and watches my kids. I am what I am. In all of my puffy, wobbly, bald, post treatment glory.
While waiting in a pre race toilet queue, I got talking to a lady who asked me if I had done the race before. My thin short hair still screams cancer to some people and after she glanced up at my scalp she paused uncomfortably. I told her my story and she proceeded to show me her open heart surgery scar from ten months earlier. Surgeons removed what was thought to be cancer on her aortic valve. And there we were waiting in a pre race toilet queue about to do a sprint distance triathlon. Both of us with an appreciation for our lives and making the most of things. Waiting for the loo. But not waiting for the things that were important to us.
Then, while waiting on the grass for the pre race briefing, I spotted a couple walking past the park. They had waited for the right moment to approach me. I bawled like a baby on recognising high school friends Mel from the Blog I GOT THE GOOD CANCER and ‘Bevan Lemon’ that drove a 700km round trip to surprise me. This gesture mean’t so much to me and I will be forever be grateful to them for doing that. Even more incredible was that Mel had just finished 6 months of chemo and here she was, in the northern part of the state on a 39 degree day cheering me on (and she still has better head coverage than me!) and all while waiting to see if her cancer was in remission or not.
When Mr Cool and I went to leave our children with their grandparents to walk to the start of the swim, my oldest son got upset. This was partly because he saw my reaction to Mel and Bevan’s arrival. But it was also about him remembering the details of this previous year vividly.
He remembers the state his Mum was in last time I did a triathlon and it was when his life changed immeasurably. Shortly after that triathlon his Mum went away to hospital many times, she came home with hard breasts with scars and spent long durations in bed and there was a bag of blood attached to her and she kept going back to hospital all the time to see doctors. She couldn’t hug him like she used to because she was in too much pain and she couldn’t lift her arm anymore. Then her hair all fell out and she was too sick to care for him and his brother, and people kept arriving at his home with meals and cards and flowers. He had waited a long time for “his” Mum to be “his” Mum again. And now we were back in the place where in his mind, it all began.
After reassuring him that everything was okay and that I was very happy and excited, he agreed to cheer for us and I gave him our camera and asked him to take some photos. He played with his brother and they watched and waited for their parents to come into view as the race progressed.
With all of the excitement of surprises from sneaky friends and unsettled kids, Mr Cool and I hurriedly made our way to the start and while walking with a friend the tears started flowing at the feeling of being back here. I had waited a long time to get back here, to this moment.
We were late getting to the start line and it was like a comedy of errors with Mr Cool and I trying to get our wetsuits on as the starter called five minutes and a few hundred people gathered in the water below us.
Still conscious of my post chemo Harold Bishop hairdo, (a character from the Australian TV Soap Neighbours) and the complexities of easing the new hot flush me into tight lycra and a wetsuit that fitted me much better pre treatment, I got a quick kiss from Mr Cool and ran down and jumped into the river at the back of the pack and immediately started the swim.
I’m not a fan of menopausal hot flushes underneath a winter wetsuit and swim cap. Half way along I had to stop to tug on the neck of my wetsuit to let some cool water in. Then I resumed swimming. When I reached the river exit I fell over getting out of the water. I was then unable to get the wetsuit down over my much broader chest and my arms were much more tired from the swim this year. I walked through transition and wasted 5 minutes just trying to work out how I would GET THE DAMN WETSUIT OFF! Riding a bike in a wetsuit? Now there would be a challenge. But I took my time and as the transition area emptied itself I was able to pry the wetsuit off my elbows and make my way out onto the bike course.
On the bike the wind picked up and I was at the very back of the bike field pushing on my own through the wind. Despite there being very hot and windy conditions, I rode the 20km’s with a big wide smile. As I pedalled along I reflected on what had occurred in 2013. My body felt more tired with each lap but I felt comfortable, and I was okay with being last. I was just thankful to be there, and so grateful to all of the people that supported us in 2013.
Then out of nowhere a woman rode up along side me. After some chatting about the heat and the wind and some introductions, it turned out it was her very first triathlon. She was intending to enter the event as a team, and wait till later on to enter as an individual. Down the track when she would have developed more fitness and discovered if she in fact liked triathlon or not. But when she went to sign up she discovered her ‘”friend” had already entered her as an individual to complete the whole thing. So on just 18 days of training she turned up and completed the race. What a legend! And that made two of us who were not waiting.
My incredible partner raced the swim and bike legs in the lead pack and then chose to stop and wait forty eight minutes for me at the start of his run leg to run alongside and finish with me. In his mind, I would not come last, as he would cross the line after me.
Yesterday, I surprised even myself. My second sprint distance triathlon achieved, twenty minutes slower than last year and my proudest achievement yet. But most importantly I was again reminded of what an amazing network of friends and family I have around me and in choosing to do this triathlon, I was able to give my sons the image of me running across the finish line, ecstatic and with their Dad in tow. I’m glad they didn’t have to wait a second longer to experience this.
Now if only I didn’t have to wait for some more hair!
In late September, a dapper knight in shining armour (aka radiotherapy oncologist), galloped through the forest and across the fields and offered this damsel in psychological distress an immediate start to radiotherapy at a hospital in the big smoke. This act of kindness and generosity helped put my mental health back on track. After nearly ten months of active treatment for breast cancer the desire to get to the finish line had intensified and anxiety levels were climbing. News of delays to radiotherapy treatment were painful for all concerned; the patient, friends, family, medical professionals.
So, eleven weeks out from chemo and six weeks from a prophylactic surgery, I finally started radio and I am very pleased to write that my active phase of my breast cancer treatment is finally complete. I recently read an article in the New York Times which depicts what it is like to have breast cancer in a developing nation such as in Uganda. Of particular interest is the graphic a third of the way into the article which reveals the rates of breast cancer and death rates to the disease worldwide. There is also a video that documents Jesse’s story. I think anyone undergoing treatment should click the link above and read this article. This has put the high quality of the treatment I had been fortunate to receive since January into perspective.
Radiotherapy very gratefully commenced and every weekday for five weeks I arrived and was greeted by friendly staff. The small waiting room only ever had a few patients waiting, the wait was never longer than a few minutes. All facets of this radiotherapy process ran as a well oiled machine. I would arrive and change into a dressing gown kept in my own locker and make my way to the treatment room with some trepidation, where I would commence each speed dating session with Varian. I was thankful for this treatment opportunity, the genius physicists and engineers that created such a machine and the doctor geniuses that write and execute treatment plans for patients.
Varian was a tall, grey, imposing linear accelerator. The first time I laid eyes on him I was a little overwhelmed. The prospect of dancing with a linear accelerator is like having twenty five dates with someone you have no interest in dating. The daunting long road of treatment weeks ahead is overwhelming but in retrospect, it does move quickly.
For twenty five treatments I laid bare chested on my back with my arms gripped to handles above my head. The friendly and efficient human technicians would move my torso and hips into position to align my chest tattoos with the laser. Precision is everything in these circles. They would then leave the room so it was just Varian and I alone. Varian would spring to life and sometimes do a sweep over my body, with his arms outstretched he would complete a cone scan and send a fast and accurate visualisation of my bony anatomical structures in 3D to the techs computer screens outside. Then the techs would re enter the room and carefully place a bolus sheet over my chest. It was laid over my tissue expander to absorb the low dose of radiation and lift the high dose to the skin. Tissue expanders are complicating little things.
The humans would again leave the room and then it was just me and Varian, alone in each other’s company. Date, after date, after date. The one sided conversation between us was always the same. Eeeeerrrrrrrrrrrrrrrrr, click, click, click, then the industrial sound of thousands of volts of radiation being projected at my chest. Not at a specific tumour as that was removed long ago, but at an area where cancer cells could localise, such as the skin, the incision site and the chest wall near where my tumour was, as well as the lymph nodes up higher near my clavicle, these beams of radiation being of a preventative nature.
Varian was always in command while I tried to breathe normally and laid perfectly still for 10 minutes. Sometimes my mind ran free and I imagined my body floating in the ocean with a dolphin swimming and circling around me because Varian’s exterior was grey and shiny this conjured up the image of a sea creature. Then at other times, it felt like I was laying on production line in an automative factory. There was something about the way his long robotic scanning parts moved into position, I felt like a part being welded. If it was early in the morning, Varian had been sleeping and the technicians would wake him up by turning him on and he would lift his gigantic head from the floor. This was the only human quality he displayed.
Varian’s gigantic cyclops head would always rotate clockwise around me, stopping at nine different angles and injecting fifteen different doses of radiation into my chest and clavicle area. But his monotonous dialogue was always the same. While I laid still and as quiet as a mouse, Varian strutted and spun and spoke…
“Errrrrrrrrrrrrrrrr, pause click click, Neeeeeeeeeeeeeeeeeeeeeeeeeeee, pause,
Errrrrrrrrrrrrrrr, click, click, pause, Neeeeeeeeeeeeeeeeeeeeeeeeeeeee, pause,
Sometimes each of the “Neeeeeeeeeeeeeeeeeeeeeeeee” radiation firing sounds would go for five seconds and sometimes ten. Not that I was counting or anything. The monotony of the sounds made it difficult to count them, so by the end of the fourth week I gave up in my quest to count, and instead focused on recognising the nine different angles he stared at me from.
Varian’s enormous cyclops eye would blink at me with each beam projection. His columnar lead lashes moved with each pre programmed position to create a shape that the radiation is projected through. Interestingly, the final shape Varian would make, was a fairly accurate silhouette of the right side of my left tissue expander. Once I saw that shape, I knew that Varian had had his way with me. Then I would get up, get dressed and leave feeling ever so slightly violated.
At the very end of my five weeks of treatment, my skin began to redden and break down. The line of skin in the fold of my armpit began to split and peel, my nipple lost its top players of skin, but the rest of my breast (or tissue expander, I’m not sure how to to refer to them anymore) remained intact.
Before this breakdown of skin occurred, I had been religiously moisturising multiple times a day with a product called Moo Goo Light Udder Cream (see www.moogoo.com.au) A generous friend who also just finished her treatment for breast cancer mailed me some and this had been great for keeping the skin moisturised and taking the heat away. It definitely helped my skin. Different products work for different people. Some friends swear by using a leaf straight from an aloe Vera plant, though some practitioners caution against this because of the risk of infection. I also used cold compresses of flannels from the freezer, and have been bathing in saline solution (boiling water and adding 1 teaspoon to 1 litre of cooled water).
At the moment, the small areas of broken skin or open burns I have developed will require regular dressings each day. The radiation dose will continue to climb for another ten days beyond treatment and then my body should start to heal quite quickly thereafter. It is itchy and painful at times. When the burns begin to speak to me, it’s time for more Solugel. Showering also provides some relief and assists in the removal of any dressings that become stuck. The aim is to preserve the skin. I can’t help but think what it would all feel like if I hadn’t had the majority of my nerves severed from the mastectomy and axilla lymph clearance. There is a plus after all to mastectomy induced nerve damage!
Fortunately, I didn’t experience any fatigue that patients sometimes report with radiotherapy. I did however develop a sore throat in the early weeks which made swallowing some foods difficult. But despite that, there were no other effects.
My children really enjoyed their time with me in the big smoke. Despite having radiotherapy everyday for five weeks I was able to turn it into something positive for them. Life continued as normal and we were able to have some fun family experiences visiting landmarks and tourist attractions in the city. Last week, they created some pictures on our iPad to document some of the things they’ve been doing with me.
Somehow and rather hilariously, they imported a picture of a linear accelerator from my iPhoto library into a Play School Art Application and I found these pictures on the iPad. I had to laugh that Big Ted was chosen to have radiotherapy treatment.
This morning, my eldest said “Mum I wish you never got breast cancer, but I’m so excited that you’ve finished your treatment!”
Well, this is kind of what happened this morning, except there was no shoe on the wall and obviously I don’t have a cute Meg Ryan type hairdo at the moment. And there is no way I could sleep with a humongous soft pillow like that as my neck wouldn’t cope with it. And there are portraits on our wall but not of doctors, sailors and scoutmasters. And we don’t own a straw broom or a cat.
But at that precise moment in the hallway, my shiny, dry, calloused, slippery, Taxotere soled feet slid from underneath me and I crashed down like a sack of spuds, landing heavily on my skull, neck and spine and split my head open (this turned out to be more of an oozing graze). This would not have happened if I was wearing my gold sequinned slippers.
For a moment I layed on the cold, hardwood timber floors evaluating my situation. I called out to my kids and Mr Two came to investigate and then ran off to get Mr Five yelling “Mummy’s fallen. Mummy’s fallen!” From the other side of the house they then got into a tug-o-war over some Schleich farm animal toys and forgot about me. (Note to self: enrol children in First Aid course, teach children principles of empathy and merits of sharing).
As I stared at the dusty skirting boards a small spider came out to greet me, but it wasn’t expecting to see Gulliver’s Travels happening in the hallway, so it hastily turned around and scurried back into its home. Boy I have really let the housework slip this year. Those skirting boards are filthy!
Thankfully, the kids returned and Mr Five brought me the telephone and I was able to call my awesome Mother in-law and Mr Cool at work for some assistance. And with perfect timing a friend from running club arrived with a freshly home cooked meal for my family and although shocked by my gorgeous appearance she looked after me until the others arrived.
I have a good supply of Endone and the GP kindly offered me more. So it’s all good, I’m just a little sore and bruised. Yet I can’t help but laugh at what chemotherapy has transformed me into in five months… a completely bald, arthritic, ninety five year old falls risk, complete with dirty skirting boards.
I have been in bed since Friday letting my last chemo take hold, perhaps I should have stayed in bed an extra day? Anyhow, chemo is done now and I intend on having the last defiant word.
Incidentally, last Wednesday was also wacky. I had a full bone scan to see if I had bone mets in my spine after weeks of worsening spinal pain. Results were negative. Yes they were! But I do happen to have a
shit load alot of arthritis instead and the Taxotere has made symptoms flare. Amazing that a diagnosis for arthritis could fill me with such joyous relief! So I am again winning! And most wonderfully in all of this, after today’s fall, that arthritic pain shouldn’t be so noticeable anymore. Well played Lisey! Well played!
In short, for those blog readers that are time poor… On Wacky Wednesday there was a huge wacky of my cancer free backy along with a smacky to my cranium.
To celebrate the phenomenal response to The Shittytittie Chemo Cuts Reveal Challenge, for the finale, here is a little video recap of the cuts… enjoy.
For all the details of the challenge click here. You can also use the category menu at right of this blog to see all of the “Shittytittie Chemo Cuts Reveal Challenge” blog posts in the series.
Since it’s beginning, I have had 103 marvellous people contact me about the positive changes they are making to their lives, large and small, to live better and create a great legacy for their families, friends or communities. For every ten people, I revealed a new haircut! So with eleven haircuts in the series think of that as one bonus. Ha!
I was motivated by the loss of a beautiful past student of mine who was taken far too soon in his life and combined with my reflection of my own mortality this year with my breast cancer diagnosis, I decided to do something productive with an impending shitty situation. So I created the Shittytittie Chemo Cuts Reveal Challenge back in April. The response to this has been overwhelming and they just keep coming in…
For weeks now I have wanted to join your Chemo Cut Challenge. What could I do? I was going to explain the ride created for school funds and all the cash we raised…. Well that turned out to be a little less worthy of “running marathons” and even just “not buying any new clothes for a year”.
Lately I have had a massive change in my depressive anxiety journey that I could bore you for hours with.
What I will tell you is that this massive change of lens is because I know you. I walk more often than not now, I even jog a little. I park further away and run a little more with the kids and just stop and watch that movie they need me to be there for. I finally had a family holiday after eight years!!! These changes were spurred by your situation, if you weren’t feeling sorry for yourself how dare I.
I have had an excellent psychologist for a while now, but somehow your attitude, wit and especially your challenge just won’t leave me. These small changes have lead to massive changes for the better in my relationship, my children’s happiness and my business.
Thank you Miss J! This is what I’m talking about! Yeah!
Here are the final cuts, number 10 and 11… the Hare Krishna and the G. I. Jane Baldy.
What was interesting throughout this process was that I was able to take control of it and have fun. The first time I saw my complete head shaved I actually liked what I saw. I could not stop staring at myself in the mirror clippers in hand, with family watching and children taking pictures on iPhones.
I never experienced the trauma of chunks of hair in the shower or on the pillow which you often hear about with people undergoing chemo. Of course, it took a few more weeks for my head to lose the mousey brown stubble from the final shave and although I am two thirds through chemo my scalp has started sprouting tiny grey fluffy hairs. Of course, I am looking forward to when chemo finally finishes at it begins to grown back. I am also looking forward to some great styles courtesy of Punk Chick next year and continuing to rectify my abysmal hairdresser visit life tally.
Heartfelt thanks to Punk Chick, JRF, Mr D, and my awesome family for helping me make the transition to chemo induced hair loss a positive experience. Oh and I forgot the echidna. How could I forget the echidna! Thank you to everyone that shared their personal challenge with me, and thanks to everyone who commented or donated.
As I move forward through this cancer treatment I will hold the inspirational contributions to this challenge and all of the support that I recieved very close to my heart. In the deep dark glum moments, when I feel like I can’t be bothered anymore, I will come back to this challenge and think about the wonderful atmosphere of positivity and change that was achieved here. It was truly inspirational!
Don’t stop wanting the best from yourself. There are no quick fixes with anything, only our positive attitudes and habit forming behaviours that make the difference. From little things, big things grow.
So if you are unhappy with aspects of your life, then address them.
Be the person you deserve to be.
Life is too short to stress.
Live in the moment.
Contribute to your community.
Appreciate your natural environment.
Treat yourself with respect.
Value and appreciate your health.
Love your friends and family.
These organisation’s are very dear to my heart at present because they do some awesome things.
Bendigo Health Foundation Click to DONATE
On a chilly day with clear blue skies and the kind of fresh crisp air I expect from autumn in my city, I drove into town with my hungry kiddies in the back seat. We went to get petrol after the fuel tank kept singing to me to fill it.
“Mum what’s for lunch? I’m starving!” says Mr 5 year old. I get out of the car and proceed to fill the tank. The smell of fuel fumes fills the air and I am reminded why I hate this job. Maybe fuel fumes cause breast cancer?
A Holden Commodore pulls into the fuel bay opposite me. A tall brunette in her mid forties dressed in business attire gets out of the car and selects her fuel. Both of our bowsers are pumping away. Two cars park behind us as drivers get out and proceed to fill their cars. The brisk air is saturated with the fuel fumes. The lady at the bowser opposite funnily has the same haircut to my Shittytittiebangbang Chemo Cut three. I am amused.
My focus shifts to the conversation inside my car between my two and five year old that goes something like this…
The five year old says… “I am so hungry, I could eat a house. What could you eat?” To which the two year old replies… “A house… Yay!”
The lady at the pump opposite us interrupts my humoured disposition at my children and yells out something out about a look. I didn’t quite hear. I thought she was talking about my kids making me smile with their antics so I just politely smiled and nodded. She then yells out really loudly “So what kind of cancer do you have?” I’m a little shocked at the direct nature of the question. So she walks across the fuel concourse towards me and yells out again “What kind of cancer do you have?” Pow, crash, boom!
I managed to clear my throat and mouthed the word “breast”. I thought I spoke but not much sound came out.
She nodded and said “Oh I thought so.”
I wondered how? Did I give off some kind of potent breast cancer pheromones that overpowered the fuel fumes? Surely the purple hat that my awesome girlfriend just sent me that I’m wearing for warmth is not that revealing? Obviously it was. Maybe my new cancer-y look is more pronounced by the fact my face is brown and my bald head is pearly white. The hairline separating the two is very prominent. I’m like a choc chip muffin with white icing most days.
She then says … “I had breast cancer ten years ago.” I said “Sorry to hear you went through that.” She then yelled back to me as she went off to pay “Finding work since has been very hard!”
This drives home just how life changing this experience is and how different everyone’s experience of it is. I thought about what it would mean to me in future. Why would this experience impact on my ability to work? After the diagnosis I’ve had, the lumpectomy, the mastectomy and reconstruction, and chemo, and the treatment plan that is layed out ahead, am I so naive as to what could lay ahead? After all, I’m feeling pretty good through all this.
My fuel tank was really empty because I was still pumping when she had paid and walked back to her car. This time she asked “Where are you in your treatment?”
I was still grappling to understand how this conversation in the petrol station had spontaneously started so I stuttered “I just started chemo and I have a busy year of treatment ahead.” She reassured me… “You will get through it as I have. It’s hard but you’ll get through it. But I don’t know how you do it with children!”
She got into her car and was gone before I hung up the bowser.
To be honest I don’t know how I’d do it without children.
Why is it that having a cancer-y looking head gives permission for complete strangers to yell out private questions about chronic diseases in public places?
I thought of many a conversation that could happen but doesn’t in supermarkets, between the bookshelves at libraries, between pumps at service stations. Hey! How’s your heart going? Hey, have you had your prostrate checked? How’s the herpes going? Got a bad case of alopecia have we? Conversations that don’t happen ever. Especially between two strangers standing 8 metres apart pumping petrol.
Then there is the flood of knowing (sometimes haunting) looks from older women standing behind me in in grocery lines. The look of sadness from people waiting in the passenger terminal at the airport. Cancer elicits some interesting responses from people.
I’m not ashamed of cancer. I don’t mind talking about it. But when I am taken by surprise it is very unsettling.
I’ve gained membership to a club I never filled out a membership form for. And in all this rapid change to my life I haven’t yet found my place in it. Am I being presently cured of cancer, am I living with cancer or am I surviving cancer? I have no idea what I am at the moment. Can I say when someone asks if I have cancer… “I don’t have cancer anymore” as the tumour and offending breast is gone? I’m not sure if I’ll ever be able to say that when I think of invasive cancer on a molecular level. The fear of recurrence will be with me always.
This is confronting to me as most days I forget about cancer. But now everywhere I go there are reminders of who I currently am… at the checkout, at the petrol station, in the park. And I am bumping into breast cancer survivors like we are all holding a huge sign that says “my breast had cancer and this experience has changed my life!”.
I am reminded of the night my whippet jumped the fence the week before chemo started. I had gastro and had had the mastectomy and reconstruction and 21 lymph nodes sliced from my armpit 6 weeks prior. I was drain free and weeks earlier the same neurotic dog had caused me to rip out a drain when another storm came through and he shivered and shook all night next to me with fear. On this recent night, at 3am a huge thunderstorm started. Minutes later, our neurotic whippet had broken out of the shed leaving the warmth of his sister, futon bed and doona behind in favour of the dark, wet and stormy night and jumped our 6 foot fence into the gully behind our house. After staggering around weak from gastro in the dark and rain calling for him for an hour I barely had enough energy to walk back up the slope to our house. Mr Cool got up and drove the streets searching for him and at 7am I received the call. He was in a yard of a house on the other side of the creek no more than 100 metres from our yard. When I went to pick him up I explained he normally sleeps inside on stormy nights but I was still recovering from surgery and unwell so he was locked in his shed and broke the roller door to get out. Turns out he chose the house of a woman who had breast cancer back in 2007.
So I am starting to think I might just bump into every woman in my city who has survived breast cancer by the end of this year and there are many of us. It’s like my future self is telling me that I will get through all of this as all of these women have done. But the hardest thing is meeting a survivor who knows. Knows how hard the journey is and seeing this ‘knowing’ in their faces. As I stood on the porch of a house across the creek the lady who had my dog also had this knowing look. Like the wrinkles on her face were a little deeper from the experience.
There appears to be two groups of survivors emerging and of course this is a oversimplification. But there is the group that have reevaluated their lives and healed themselves. And the group that is broken by the ordeal and will never be the same. Both live in fear of the cancer returning but one group uses it to fuel an existence of not wasting time in life but living every day fully and with gratitude. At the moment I identify with this group. The second group is caught between the why me? Why did this happen? My life will never be the same! There is a lot of bitterness for what has been lost. About the change to where they thought their life was headed.
I am yet to know which team I’ll stand on. I’d like to think the first team. There is a lot I have control over but there is so much I don’t. Such as how I will respond to the second drug regime in chemotherapy, or what the side effects of radiotherapy will be. Will my implant survive radio? How my body will respond to tamoxifen? Will this disease come back?
So far I am coping remarkably well. But if I am here in 5 years or 10 years or 20 and call myself a survivor of cancer, I want to be able to say to young breast cancer women that it is your journey and your experience. Make of it what you will. Don’t play the part of breast cancer patient. Play the part of you.
But after a spontaneous conversation with a lady in the servo and being stopped by airport security because of my threatening cancer-y head covering scarf today, I think it might be time to visit my psychologist to have a chat about these different teams that are emerging. It’s not a matter of which team I’ll join. But perhaps it’s about making my own third team and of letting go of how things used to be and embracing this change in a more positive light. We can also discuss this other phenomenon which I’m going to call ‘stranger danger’. These are the pow, crash, boom moments, where cancer is smacked in your face like a huge wet fish by total strangers. It’s amazing where the unsettling comes from. Places where you least expect it.
Since Sunday, I have spent time with three very important women in my life and I have broken down in tears with each of them. There has been a mental shift since the weekend of wonderful experiences with my awesome Melbourne friends.
I visited my dear Nanny who turns 90 in April. She never ceases to amaze me. She was 52 when I was born. There was so much living that went on in her life before I even met her and she is still with us. She has experienced her fair share of loss from cancer in recent years. But she is a strong and upbeat lady. Her sunny disposition and genetic luck has allowed her to live a long life, much of it without teeth. In the late 50’s she had a dentist in London remove her ailing teeth to prepare for dentures, except she immigrated to Australia on a ship earlier than anticipated and the dentures never became a reality. Her sweet sunken cheeks have always been the vision of the perfect Nanny to me.
I had a visit from my awesome sister in-law who played lifeguards with my children for hours, rescuing imaginary swimmers from imaginary sharks in our garden. With credit to “The Octonauts” children’s television program, the species of sharks were diverse. From the surf lifesaving tower on the deck they took turns at the command post talking into pretend walkie-talkies. This was to the delight of my eldest son who had not removed his lifeguard cap for three days prior. She cooked us dinner and cleaned our bathrooms before she raced back to the airport for her return flight to Queensland. My brother chose for himself an amazing life partner and mother for his children.
I also had a pop in visit from my wonderful mother in-law yesterday as I frequently do to see how we all are. She has the knack at turning up at the most perfect of moments. She has a kind of sixth sense of sorts which I am eternally grateful for.
There is something very powerful about embracing another woman that you care for when you have breast cancer. The disease is taken very personally. It sniggers at the qualities that make us mothers, daughters, sisters, aunties, nieces, grandmothers and granddaughters. It attempts to sabotage a bond between women. But cancer can never get in the way at that. An experience like this just draws people even closer.
Even as I type this the tears are welling a little behind my eyes. I’m thinking this may be the start of the depression procession of sorts, or it might not be. I just have to watch where this goes and act quickly. The breast care nurse told me not to wait, but to see my GP for some anti-depressant medication. I have never dallied with anti-depressants in my life, but I was given some post diagnosis and one of the side effects made me anorexic. So I understandably have some trepidation. I first would like to try my own ‘walk and talk therapy’. This is where I walk for an hour daily, and talk to as many people as possible about how I am feeling. I am now fit enough three weeks post mastectomy to get out and move again. I can’t yet run as I am still healing and the tissue expander is settling. But exercise has been so beneficial to my moods in the past. I think this might help me immensely. I might also see a psychologist to have a chat, though I think psychologists should have really great coffee machines in their rooms. Maybe even some biscotti or something. That might help too.
Part of me is wanting to rebel against the predictable pathway of the breast cancer experience. I am seeing this common journey that women take on forums and blogs and in the knowing looks of women sitting in hospital waiting rooms. Doctors and nurses are quick to try and solve the problems for you. Often with medication. But it is just going to take time. Emotionally I will fall apart. It is a given. But I will put the pieces of myself back together again. Of course it is easy for me to articulate this at present, as I haven’t yet been gripped by the effects of chemotherapy. But this needs to be ‘MY’ journey. I don’t want to be told I will get depressed. Or my hair will definitely fall out. Or my nails will turn black and fall off. Or my bowel will never be the same. A self fulfilling prophecy effect will have no part in this. I need to let the experience unravel itself.
It has been two months since this cancer wheel started spinning. It has been a bit like being on a spinning ride and the Royal Show. The Gravitron ride was a favourite when I was younger. It looks like a spaceship and you enter and lean against the wall. You are propelled round and round with such force that you just grip on as tight as you can. You can’t really move as the force is too great. And then as it slows and gravity takes hold, you see the people opposite pulling their dresses back down to a respectable place and wiping saliva from their faces. Slowly but surely, everyone is back in the land of gravity, or should I say reality and the dance music stops. Then everyone gets off and gets on with things. Suddenly, since the surgeon, plastic surgeon and breast care nurses dumped me, I have all of this time on my hands to think about what has actually occurred in the last eight weeks.
To add to this reality, today I met the geneticists from the Peter Mac Familial Cancer Clinic. There were two people. Geneticist One was nearly seven feet tall and wore glasses. He was an enormous graceful giant. His height may have instilled in him an interest in how genetics worked and this may have been motivation enough to follow this career path. He reached out with his gigantic hand and softly shook mine. We walked the corridor side by side and went into a consult room. As he stooped through the doorway to enter the room I expected to see a beanstalk and a golden goose. But there waiting behind the door was a genetics counsellor. A stunningly beautiful girl, fresh from university and dressed impeccably. She presented a set of perfectly pursed lips painted with a deep red lipstick. I so wanted to get out my iPhone and take a picture. A new obsession perhaps? For a while I found it hard to absorb what she was saying because of her lips. I kept focusing on how they moved. Then how her wonderfully styled brunette hair framed her face.
I had gone prepared with all of the dates and as much as I knew going back four generations. The information covered relatives from both Australia and the United Kingdom, many of which I have never even met before. Much of this information I compiled by trawling though the work my eldest brother had done on the Ancestry.com website. I am really grateful for his interest in genealogy. I also contacted distant relatives via Facebook, and got some information from my Mum. Armed with these pages of causes and dates of death and existing illnesses I marched confidently into the room. Impressed with the research data, the gorgeous red lips asked me if I was from a research background. I told the lips that I used to be a teacher and lecturer and I love to research. I thought I was just going to supply them with information about my family cancer tree today. Easy.
I was so naive.
I had not prepared for the level of emotional and intellectual drain this meeting would entail. The beautiful woman in front of me was full of information. But there was a deliberate tilt of her head which revealed a kind of pity to me. She obviously thought she knew where my journey was heading. Like she has access to a crystal ball or she has seen this journey many times before. Talking with the broken about their potential mutant genes as they are gripped by this disease, as they search for an explanation as to why they are afflicted. So I decided not to focus on the head tilt anymore.
After looking through the details of my family cancer history, there was discussion about gene faults that if found would put me at a higher risk of developing breast cancer in my other breast. Then they pre-empted a discussion that I might be having with my oncologist in weeks to come, this time about my ovaries. If I test positive for one of the BRCA 1/2 genes, breast cancer women under forty are advised to have their ovaries removed. There was also discussion about multiple potential gene faults merging to have created some crazy mutant genes that can cause young women under 40 to get breast cancer. I don’t really need to know about this. I can’t prevent what is done.
What does all of this mean?
The reality is that only 5 to 10 percent of tests come back positive for some genetic link. Many responsible genes and genetic mutations have not been discovered yet. Though there is certainly a chance that in 15 years researchers will have discovered more genes at work with this breast cancer disease, if genes are even a factor. It is such a complicated matter how diseases occur in some individuals and not others. The ‘nature versus nurture’ theorists are still pointing their fingers and arguing on the sidelines.
I am informed that my blood sample will be stored and will be used in the future by genetic researchers. I enthusiastically offered up litres of blood for this purpose and this drew some laughs from the Giant and the Beauty. One vial is enough. But I find this research to be positive. After all, this process is how the BRCA 1/2 gene faults were discovered and this has benefited many.
Today, genetic testing might assist some breast cancer women and their practitioners to make decisions about whether they will undergo particular treatments in favour of others. It is also a process high risk women (such as those with one or more close relatives having had breast cancer) might explore to assist them to make decisions to prevent breast and ovarian cancer from occurring. There are many women in Australia and around the world who have spent much of their lives worrying about the risk of getting this disease. There is a whole network of women supporting one another through a great organisation called Pink Hope. It can be found at http://www.pinkhope.org.au. These women cling to the results of their genetics tests. I feel quite guilty given I had never given breast cancer a thought and have been free of the worry these women have had to endure, and yet the disease found me anyway. Here I am, today, with a genetics counsellor talking about breast cancer genetics.
In my case, the decision has been made, given my cancer is multifocal and aggressive there will be a second mastectomy, so I don’t need the results of a genetic test to tell me what I should do. There will be post mastectomy radiotherapy and genetic testing is not a useful indicator for whether to do this. But it might clarify the ovarian issue down the track. If I am negative for BRCA 1/2, it is unlikely the ovaries will need to be removed. This is a really important decision, as removing ovaries prior to menopause can lead to a whole array of health issues in young women such as osteoporosis and heart disease. But if faced with having a BRCA 1/2 gene with a hormone receptor positive breast cancer and preventing ovarian cancer I know what I would chose.
After almost two hours of discussion about genetic testing, information, privacy issues, disclosures, pros and cons, ramifications of it moving forward, etc, I am clear that genetic testing will be a good thing for me and my immediate family, but I will talk at length with Mr Cool about this. I also like the idea that I am contributing to a research data bank.
There is just one small matter to be sorted. Before I can sign on the dotted line, I have to see what the ramifications on my existing life insurance policy are of genetic testing, as it can substantially alter or even void some policies. So I have to look into this before the signing and supplying of a blood sample. Some types of insurers don’t like the risk associated with someone who has tested positive for some genetic predisposition. Bastards! Luckily my ‘future self’ told me to take out a life insurance policy a year ago as I had no current coverage through my superannuation as a stay at home mum. I would be “up shit creek without a paddle” if I wanted to take out a new policy now. Thank you again future self.
Down the track, my family might like to know the results of this test. There is no urgency for any of them now. But if I have any genes responsible for this cancer, it might be beneficial for one of my brothers to be tested. If he has the same gene then as parents, they may impart such information to allow their children to make a decision to be tested when they are adults. Likewise, all of this applies to our own children, my cousins, and my cousins children. This is all irrelevant at the moment but it is worth giving some thought to future possibilities.
Genetic testing is a highly sensitive and deeply personal issue. It does have quite large ramifications for the future. People can use the knowledge about genetic predispositions in many ways. Some might live proactively and live a healthy lifestyle and be screened. Some might live in fear of developing a disease they have a gene mutation for. Some might chose a route of cowardly defeat and live a lifestyle detrimental to health as if they are saying “whats the point?” Some might not ever give their genetics a thought. Of course, there is also the possibility that one could have a genetic mutation for a particular disease and it is never activated in their lifetime. There are no guarantees with anything.
I was glad I had the opportunity to sit with the Giant and the Beauty for two hours. I look forward to my next meeting as it feels like I’m back in the dating game.