Making Space

Carrying the load at the airport.

Carrying the load at the airport.

We just returned from an amazing ten days which included supporting Mr Cool in his quest towards future Kona Ironman Triathlon glory, and holidaying with awesome family.

Watching the elation of super fit people achieving their dreams when they have worked tirelessly over the long term to achieve such things is life changing. These athletes are highly successful people; highly disciplined, highly motivated and high achieving in most aspects of their lives. I couldn’t help but be impressed as I gazed around at the 1600 people getting into their wetsuits.

Ironman Triathlon competitors at the start of their long pilgrimage.

Ironman Triathlon competitors at the start of their long pilgrimage.

It took me 37 years to understand the benefits of health, fitness and dreaming big. And although Mr Cool has completed ten of these events, I think I only just am getting it. You cannot be witness to these people and not be motivated to make positive changes to your life after watching the dedication, commitment and achievements of Ironman competitors. They juggle their family and full time careers with their training to be the best version of themselves possible. On the surface it is an individualistic sport, but there is so much support from family to get competitors to the start line. It really is a whole team event.

Waiting for my Mr Cool to enter the finish chute as the clock was ticking towards 11 hours, a woman in the crowd noticed my head scarf and came and stood with me and my children against the crowded finish chute fence. Through all the festival noise and dance music of an Ironman finish area and in the twilight of dusk, she asked me if we were waiting for someone special to finish. I was very emotional. It had been an enormous four months and Mr Cool had done his best to train for such a gruelling event that involved swimming 3.8kms, riding 180kms and then running a marathon of 42.2kms. He could have easily dropped the goal of completing another Ironman when I was diagnosed but I did not want him to. It was important to me that he continued to do what makes him happy and this sport is what he truly loves. It was important for us as a family to keep working towards his goal of one day getting to the world championships at Kona Hawaii. My breast cancer, our breast cancer has made this even more important. His preparation was less than ideal, often missing his long rides and runs because we were in transit to Melbourne for surgical consults and waiting in waiting rooms for appointments. But he made it! We all made it! And I even managed to run a 5km fun run the day before.

This woman in the crowd then spontaneously tells me that she hangs out with a breast cancer survivor dragon boat team. This was four minutes before Mr Cool came down the chute and I nearly missed him because I was the recipient of a one way conversation with a stranger about breast cancer. I am nearly half way through chemotherapy. I am quite bald now having lost most of my hair. Even with hat or head scarf, I am holding up the cancer sign nice and high. It can be seen from miles down the road like a take away food joint billboard on the highway. This would explain why total strangers approach me from crowds to connect with me and share their experience.

Coastal adventures

Coastal adventures

Post Ironman, on our family holiday, I was privy to watching the joy of our young children playing on the beach and experiencing new adventures. They largely experience their world without fear. I saw the elation in their faces running from waves lapping at their heals and jumping the lines of whitewash as they rolled towards them. I saw them drawing in the sand with driftwood and climbing the dunes in search of the next view. They also climbed trees and endlessly chased each other. They spent precious time with their cousins, aunties and uncles.

These are the experiences that matter.

But to be honest, unfortunately my level of joy was dampened by this fear of local recurrence of or metastasis of cancer. I am sure this is a common aspect for many on the cancer journey. Cancer lays waiting. It is insidious like that.

All of the fears I had in recent months since my cancer diagnosis about whether I would be able to travel interstate while undergoing chemotherapy, whether I would pick up some awful bacteria from being in public places like airports and public toilets and restaurants, whether I needed a lymphodema preventative sleeve while flying, if I’d even be well enough to see hubby cross the finish line of his tenth Ironman, all of this fear and the worry dissipated. I am doing fine and am able to live as I always have, (albeit without hair and with a new breast). This ‘new normal’ is almost ‘normal’ in the moment. Just enjoy the holiday and forget about cancer!

Then, two days before we flew home I developed a simple head cold. You know the kind; sore tonsils, congested sinuses, tired, mild cough, runny nose, achy joints. And the spiral of fear started all over again. This time, worry about whether I would develop a fever. Whether my white blood cells had climbed high enough since the previous dose of chemo to combat the virus that was taking hold. Might I be hospitalised with neutropenia and miss our flight home? And yet again I was totally fine. The worry was all in vain. My body fought the virus off.

Then, just one day before we flew home I rolled over in bed while holding our two year old and pulled a muscle or cartilage between my ribs. It hurt to laugh, cough, sneeze, blow my nose, breathe deeply and bend over. The cycle of worry started all over again. Every twang of pain struck me with the deepest fear. Have I fractured a rib? Is this bone mets in my rib. Why is the rib pain coming from right under where my tumour was removed? How close to my chest wall did my surgeon say that damn tumour was? How fast could I move from stage IIB to stage IV breast cancer? I have grade three fast growing cancer with nodal and vascular involvement. I am screwed! Alarm bells a-ring-a-ding-ding!

Of course I will mention this rib pain symptom to my oncologist in the coming days. But today when I woke the pain was pretty much gone. In cancer land there is a rule, to report to the oncologist any symptom that persists for a few weeks. This helps limit endless reporting of every little tingle and twang that goes on in our bodies and reduces unnecessary tests. I’m breaking the rule on this occasion.

The hardest part is not having any clue of what my future holds. It’s easy to reason that none of us have any clue about our futures. But when faced with the unpredictability of breast cancer it’s like the seeds of a resilient weed in your body have been planted or blown in by the wind. Sometimes the landscape conditions aren’t favourable and the weed doesn’t grow or it stays localised. Sometimes the weed takes off and covers the entire landscape infiltrating every spare piece of earth and driving it’s roots deeper into the soils, crowding out the native plants that are necessary to keep the ecosystem healthy. There is no rhyme nor reason to who loses control of the weeds and who doesn’t. Genetics must be at play. We just don’t know which ones yet.

This fear of metastases or progressing to stage IV disease will never leave me. So this fear needs to be managed, restricted and utilised in a proactive way so that I’m not crippled by it.

It is amazing to know that there are many woman wordwide living productive lives with metastatic or stage IV breast cancer who support each other emotionally through forums, blogs and closed social media groups. These women have the most to teach us. They support themselves as it seems that most research and funding is directed at raising awareness for breast cancer and early detection practices.  But what about finding the cause of breast cancer?  And what about researching metastatic disease?  What currently happens to the hundreds of thousands who progress to stage IV disease and live with it for many years?  Imagine being told you are now terminal?

For me now, none of this worry about the effects of cancer treatment or the potential progression of cancer does any good or has any bearing on the outcome or my future. I don’t have control over where my journey is headed. All the positive thinking in the world and the cleanest diet imaginable has no bearing on who survives and who doesn’t. Who lives a long time and who doesn’t. And to think so is naive and is a disservice to the hundreds of thousand of people that have been taken prematurely by breast cancer before. Oncologists don’t know why the disease progresses in some and not others. They don’t know why the disease is more aggressive in younger women versus post menopausal women.

Once you are accepting of this, you can move forward with living. And that is pretty much all of us should do right? Live our best lives.

So today, I took my mild head cold and my now painless rib and I slowly but joyfully ran the 8km Mothers Day Classic Fun Run to raise money for breast cancer research. People generously donated their money to the cause. I was so energised from this that after it, I then went and walked the 4km event with my girlfriends and my five year old son. And I was kind of disappointed that he never even wanted a piggy back from me as he usually would. But I am just so grateful that today, on this day, I am here to see this kid growing up.

I just have to keep making the space for dreams and to ensure that the rays of joy are allowed to shine through.


Licking Lava

Last night I flew freely, soaring like a sea eagle over the lava fields of Hawaii in my dreams. Unfortunately I must have swooped down too close and dragged my tongue through the hot molten ash. Nine days after my first chemo infusion and there has sprung an ulcer party in my mouth and throat. It’s like a really bad party. Crashed and full of drunken, lust fuelled, vulgar teenagers. The police will need to be called! I think I can hear the faint sounds of a wambulance in the distance (he he).

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When my family visits Hawaii in a few years to fulfil Mr Cool’s dream of competing in the Ironman World Championships in Kona and we happily travel the islands, I will keep my tongue firmly in my mouth and away from said lava. There will be absolutely no lava licking permitted on the itinerary.

My long love affair with hot of cups of tea has been extinguished. Along with many other things I am guessing. Like many shitty things in life though, it is temporary and will pass.

At least there is great music in our world. Music makes everything alright. Ain’t no mouth ulcers gonna stop me from singing! This is what I write… This is what I write…


This is What I Write, Ainslie Wills.
Large Noises film the bands that blow their minds and give them goosebumps. At the same time.

http://www.largenoises.com


Homecoming

I am home.

Mother’s guilt has been quietly bubbling away in the back laboratory. It started with the diagnosis six weeks ago. First it appeared as grief from the impact of my lost health on my children. A kind of lost opportunity cost is to be paid for all of the wonderful experiences in 2013 that won’t go ahead. It is not what I would ever have wanted for my kids and husband, or their grandparents. What was to be a year of healthy misadventures including play, travel, athletic conquests, my first time snow camping and skiing with my oldest boy, has been replaced with the possibility of 5 surgeries in Melbourne, 3-10 months of chemotherapy, maybe some radiotherapy for good measure, fatigue, pain, laying around and telling them Daddy will help, or Nanna can do that, or maybe my friends will do that when they visit. They will see me be sick, see me cry, see Mummy lose her hair, see Mum and Dad argue as they juggle the altered dynamics of home and parenting roles.

I might have to miss going to Port Macquarie in May to support hubby in his tenth Ironman triathlon finish. He proposed to me when he crossed the finish line of his first Ironman back in 2004. My Mum just happened to be there that moment. All day, he struggled through cramping and vomiting and every time he saw us he asked me if I would make sure I had his bag at the finish line. I never knew I had carried round the engagement ring with me all day. I have been at every one since and as our family has grown, so too have our children.

More annoying to me than the possibility of being unable to support him in this race, is the thought of missing the week of camping we had planned for our children. A week camping with their uncle and aunt and their three cousins in Northern NSW. I will make sure it does go ahead. I hope I can go, but the thought of me not being part of the experience is playing on my mind. Don’t worry about things too far ahead I keep telling myself. One day at a time remember.

To add to the dose of mother’s guilt, both children developed a bad throat and cough last week. Of course it was the night before I went to Melbourne for surgery. So not only did I leave, I left when they were sick. There have been nights when they haven’t slept. Coughing wakes them and they cry. Our youngest just wants to be held, so he has spent every night in bed, one night between Nanna and Grandad, and then the rest of the week between his Dad and his brother. He is not happy sleeping unless he is the filling between two pieces of sleeping pumpkin sourdough.

When I returned home five days later, my eldest son took it in his stride. My youngest not so much. It has been a week since he cuddled me with his usual affection. There are the physical barriers of ghastly drainage tubes that I carry round in a bag and the mental barriers as well. When the honest toddler came to visit me in hospital three days after I left him at home sick, he would not look at me, he did not want to be put near me. There was a bit of punishment for mum to be dealt out. She abandoned us last week and left us home.

Since arriving home there has been more of the same, Dad is the one he goes to for everything (Which at this point isn’t such a bad thing). Dad is the one to console him. I am like a stranger. I have been moved to the spare room as the marital bed has been taken over by two sick children and a squashed on the edge, contorted husband. Too much noise and movement in there for my liking. So the spare room it is for me.

Hubby is at times buckling under the weight of all this new found pressure of kids wanting him 24/7. As much as Mr Cool can buckle I suppose. I am sure he is also worried about the things he isn’t able to achieve at work. Then there is the missed sessions of training for the Ironman triathlon that is just eleven short weeks away. Training for these events normally keeps him in tip top shape emotionally and physically. He doesn’t know it yet, but I think we might benefit from some couples counselling once the impact of this journey becomes clearer. (I can feel his eyes rolling from another room as I type this!) What is it with men and their dislike for communicating about their feelings?

The flip side of the negative opportunity costs of cancer are some wonderful gains. There will be lots of positives in this experience. Though hard to see now, we might come out the other side of this much closer as a family, we might be grateful for what we have, the small things will mean a lot, we will cherish our time together. Other positive experiences will open up. It’s not what I wanted for my children and family, but it is what it is. We will try and make the best of it.

The other day in hospital I got a visit from a dear friend who I went to university with 14 to 17 years ago. In that time we shared a miners cottage for a while. It was built in the Goldrush days of the 1880’s. Back in this time men grew on average to 5’4″ in height. The door frames and ceilings were just above our heads. I remember us living off a student diet and I used to laugh at him when he used to eat a five bulk pack of two minute noodles out of a large bowl in one sitting. Across all of that passing time, our humour and conversations have not changed, racing along without even a second to catch a breath. He happens to now be a firefighter at one of the largest metropolitan fire stations and as a fluke, it was just two blocks from my hospital. So with schedules on our side, he was able to show my boys around the trucks and station. Something they will cherish for a long time.

In the cage of the fire truck.

In the cage of the fire truck.

Had cancer not happened to me and my family, I wouldn’t have seen him for another five years at least and my boys would not have had this awesome opportunity. So cancer initiates some wonderful opportunities and learning experiences as well. Then there was a visit from a student I taught when I was a lecturer 11 years ago. On her visit, she stole my children’s hearts and then told me some of her internet dating stories. Last week also brought my closest, long term friends in to see me as well. Very special moments.

The emerging florist

The emerging florist

The events of the last six weeks have opened my heart to just how many wonderfully supportive family and friends I have. Our doorstep has seen the arrival of not one, but two juicers weeks apart from the same people, (incredibly the first to try, and the second, a gift to keep) and I have been given my own pre-purchase intimate iPad demonstration. There have been so many flowers delivered our house feels like a florist. There has been an array of home cooked gourmet meals, get well cards, gifts, and lego mini-figurines for our children. There have been lots of gentle hugs, messages of support, offers to mind the kids (which is the most important job of all). A whole community has opened up that I shamefully never took the time to tune into before. Of course this also includes the hundreds of keyboard warriors who are following me and pulling me out of any dark places I might be heading towards in the coming months.

I am acutely aware of depression sneaking up on me. When it comes, it will be a ‘depression procession’ of sorts. I am also on guard for signs of it in my partner and loved ones. What is surprising about having cancer is once you are okay with it, you begin to tune in to how it effects other people. I was surprised to see one of my dearest long term friends upset when she visited me in hospital the other day, this is a friend who visits hospitals all the time for her profession. She said it was different when it is someone you know. It made me feel like I had been a little selfish holding onto it as only my experience or journey. The impacts are far reaching.

We have entered another cycle of waiting for results. There has been the waiting for diagnosis, waiting for the results of lumpectomy and sentinal node biopsy, waiting for the results of the bone and organ scans (which came back as ALL CLEAR, so nothing major lurking elsewhere at this moment!) and now the waiting for the results of the mastectomy, nodes and nipple scrape and freeze. In all of this you just want to have an idea of the treatment that lays ahead, especially with respect to the chemo regime. It has been one and half months and I, we are still waiting.

Friday. Friday will tell us.

As I type this, my youngest has come into my room to give me a cuddle because they are going out. Day seven and I am back in the ‘need to cuddle Mummy’ books. The oldest is very excited he is off to bush kinder this morning after missing the week with his cold. I have asked him to try and remember some of the details so he can tell me all about it when he gets home. Always, he has a great time, but he often says “I can’t remember what happened” whenever I ask him how it went.

Before leaving he took a photo of me on the iPhone. A portrait of me in these homecoming days. Drains, pillow and the little expander that couldn’t. The breast you can see is the unaltered version. The pillow is needed to alleviate any pressure on my chest or armpit.

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When the oldest returned from kinder, he told me about the kid that pushed him over today. Last week, this would have been upsetting. But today, he thought it was funny. This afternoon, he asked Daddy to give him a haircut. He asked for a mowhawk style and Daddy obliged. He is growing up.


Checking in or not?

Facebook location check-ins have always been amusing to me and I have long been a participant, (sometimes unwilling). Must be something to do with my love of all things geographical. From atlases, topography, Google Maps, orienteering, the way ‘space becomes place’ to people through their cultural interaction with it. After all, I did become both a Geography and Outdoor and Environmental Studies teacher.

The bulk of my Facebook check-ins have been added by my cheeky husband who predominately checks me into cafes and restaurants.

Sometimes, we leave our town and only an hour later stop for coffee. If he likes the brew, the menu, the ambience or the service, the place is awarded an esteemed Facebook check-in. It’s a strict criteria, being that we are both from hospitality backgrounds.

Sometimes he might check me into a cafe twice in one day and has on occasion, to the amusement of our friends, checked us in for coffee or food only hours apart. Perhaps we are addicted to cafe experiences and coffee? Maybe.

I like to check into special events in my life. As a way to document my journey. And I am sure that this is a common reason for others. One day, I believe Facebook data and the enormous digital footprint that all of us are leaving will be a wonderful tool for researching our ancestors. So it will be part of my legacy to my children and grandchildren in a small way.

Check-ins are always of people’s positive experiences. Those positive aspects of their lives get to be on show; holiday destinations, theatre shows, marathon events and Ironman triathlons, restaurants, weddings, visits to national parks. The possibilities are endless. Sometimes it’s to brag about their experiences. Sometimes it is purely to document their life as a form of historical record keeping. The Facebook timeline format helps facilitate this.

People rarely however, check into funeral homes, hospices, brothels and cancer hospitals and I find this very interesting. The feared and the taboo subjects. Death, sex, and cancer.

So as I sit upright in bed post mastectomy and lymph clearance surgery, on the third floor with a nice cup of tea, and an excellent view of St Patrick’s Cathedral, I decide to have a look at the check-in statistics of the Peter MaCallum Cancer Hospital. Not surprisingly, it says only 248 people have checked in here in the recent years that Facebook introduced such a feature.

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Is it the shame of it? The shame of having cancer? Is it that people are deeply private and don’t want to document their health issues for the world to see? Is it consideration for the uneasiness of the people reading about someones health struggles that deters people from checking in to such places?

The Peter MaCallum Cancer Hospital is one of the busiest buildings in this part of Melbourne. The cafes around it are full of patients and workers from the hospital. Some who have come on recommendation from the oncology nurses or surgeons. But check-in numbers here are very low compared to surrounding landmarks.

If I look to the surrounding sites, this is what is revealed…

Treasury gardens (7200),
Parliament Railway Station (7500),
Fitzroy Gardens (25892),
Park Hyatt Hotel (10085),
The Commune Cafe (789),
Peter MaCallum Cancer Centre (248).

There are many check-ins for the parks and gardens adjoining this hospital. Many check-ins in the cafes and restaurants in the same block. And I wonder how many of these where people who had visited Peter Mac that day, as a cancer patient or accompanying someone who was and were to ashamed to check-in.

Cancer is a common disease and a major health problem in Australia today. The Australian Cancer Council states “At current rates, it is expected 1 in 2 Australians will be diagnosed with cancer by the age of 85″ and this year alone …”an estimated 124,910 new cases of cancer will be diagnosed in the Australian population.” So this place, and similar hospitals will be the reality of many.

The Peter MaCallum Cancer Centre is a world leader in cancer treatment, research and education. Here, they treat more cancer patients each year than any other hospital in Australia. Their treatment of me has been nothing short of amazing. I can not fault them. Peter Mac is full of wonderful surgeons, doctors and nurses who work everyday to remove and treat cancer, and care for those with it. A noble career don’t you think?

So I have decided that I am going to check-in here on Facebook today. Along with the 248 other people who bravely did.

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24 hours from the surgeon’s scalpel

A strange calm is hanging over me. There are so many unknowns ahead but the immediacy of the removal of the cancer takes priority.

I have no idea how I will process what lays ahead. My fertility window has just been slammed shut. We were trying for our third child this year and I can’t even connect with what this will mean to me or my husband in the months and years to come. It never occurred to me that the couple of years I still had to add to my family might evaporate into thin air, but it has. At nearly 38, this diagnosis means I’ll be on hormone drugs till I’m 44 and pregnancy hormones feed this cancer. So future pregnancy would be beyond the realms of sensibility.

How will I feel about my changed breast? A lumpectomy, although a small procedure, will pretty much remove half of what I have as there wasn’t much to begin with. I have decided to have this minimally invasive procedure first, (lumpectomy and sentinel node biopsy) then treat the cancer asap, and then decide what to do later on with mastectomy and reconstruction or radiotherapy. Statistics for survival are the same with lumpectomy versus mastectomy. With young children a mastectomy would be quite a feat to recover from with groping arms and cuddles and lifting. And we don’t want any complications that would delay chemotherapy from starting. Women can still get breast cancer after a mastectomy, but it tends to be much earlier detected. The surgeon tells me I can keep my nipples, but that one will point under my armpit post surgery. How exciting!

The surgeon has also suggested I have a 30 percent chance of the cancer turning up in my other breast. And that a double mastectomy might be on the cards. The pros for this being I would have “a set” that look the same if I chose to have reconstructive surgery, and I might also get out of having radiotherapy if both breasts are removed. There are some rare cases coming through in research studies where women under 40 who have radio for breast cancer are turning up with radio caused chest, lung, liver and bone cancers in their fifties. Yippee!

How long will all of this it take to heal? How long will it be till I can continue on my distance running quest? Will I ever get to finish a half Ironman Triathlon?

I had so many goals for myself this year. Cancer was not in my plans.

Will they get it all out and what will the pathology results be? Will the nodes be involved? What if they are? What will chemotherapy do to me? Who will look after my kids? Will my husband cope?

I’m hurtling towards some challenging times.


When mortality comes a knocking

I felt a lump in my breast in the first week of December. I was watching telly and was laying on the couch with my hands tucked under my armpits. I felt, for those of you familiar with the thriving Australian milk bar confection times of the 1970’s and 1980’s, only what could be described as a chocolate, liquorice, bullet type lump, low in my left breast. I never liked that confectionery. My choice of preference was to spend my twenty cents on five caramel mates and two musk sticks.

I made an appointment with a GP the next day.  It would take a month to meet with a doctor to have them tell me I was right, there was a lump, but that 95% of lumps were harmless.

I went on my holiday to Western Australia.  My amazing husband completed his ninth Ironman triathlon. The lump quietly whispered to me throughout that time. Little reminders that it was still there. When I plucked up enough courage, I would have a quick squeeze to see if it was still there. But only at times I felt brave. And it was still there all month. I mentioned it to my Mum and my girlfriend. And on we went through Christmas and New Years.

Then January the 3rd, the doctors visit. January 8th, the mammogram.  I remember wanting to make a joke with a Facebook status about what a joyous experience mammograms are.  Highly recommended. Not! But I didn’t. And then the next day, January 9th, I returned for the ultrasound and core biopsies.

I knew in the ultrasound.

Breast tumour on a mammogram

Breast tumour on a mammogram

The technician, doctor and nurses demeanour changed and all three people wished me the most sincerest of good luck when they exited the room. They asked if I had children. They did everything to tell me I had cancer without actually speaking the words that I HAD cancer. I was also given a box of tissues. But I wasn’t yet crying.

This is where two weeks of horrific, dark, doomsday, adrenaline filled, panic and nausea set in.  And the results of the core biopsy wouldn’t be available for another agonising two days. Billy Joel sang “Only the good die young” in my head.  Every time I closed my eyes, my life was playing on a movie reel.  It went like this for five days.  I picked out all of the meaningful times I’ve experienced.  Growing up on land with horses, playing lots of sport, travelling around Australia in a Kombi, being overseas, meeting my husband, Outdoor Education work experiences, teaching students, having children,  the best parts. I said over and over, “It’s okay, you’ve had a great life.”

I did not sleep for 16 days. I thought I might have a heart attack or stroke.  I sought medication, but it made it worse. I developed symptoms of anorexia and lost 5 kgs in 8 days.  Incredibly, while this was happening, with the support of my dear friends and family I made it to the start line of a triathlon in Echuca. I finished it. And after they left my house, I fell to pieces.

I went to the local hospital where a fabulous doctor explained that this was a process I had to go through and that it would settle with time. I was reminded that a month ago, I had cancer but didn’t know it , and I was a seemingly healthy, fit woman running races. The cancer may have been there for years.  And this helped me escape from that bleak reflection of my mortality that had stared back at me for sixteen very long and difficult days.