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.


6 Comments on “Making Space”

  1. Wow, what an experience and what a marvel you are, Lisa!

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  2. helensamia says:

    I think you are doing a very good job of living your new normal… We have no control of the future but we can control the “now” time. Live life as full as you can dont let those fears stop you xx

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  3. Dottie M says:

    This says it all, I am very proud of you.

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  4. Nat Watson says:

    Again Beautifully written Lisa, glad to have shared the MDC morning with you and your pals. See you again soon. Xx

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  5. liza hopkins says:

    beautiful words from a beautiful personsss

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  6. Punk Chick says:

    Hey Lise, 20years on and the fear still steps in and gives me the right shits. I’ve had a nasty virus for the last 3weeks (and yep i had a bout of the shits!!) and my brain has struggled this time. Not until a second blood test that told me my blood count had recovered that i have been able to move forward. I’m still not well but that blood test was the sign post for me this time. Finding the ‘sign post’ can be the hardest thing to move through that fear. Lots of love to you xx

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