breast cancer

This Is Your Life

I am very fortunate.  At thirty nine, I feel like I’ve loads of moments in my life when I was part of something really meaningful.  For the most part they have frequently involved a group of people committing to something great and working hard towards achieving it.

March 1st and 2nd was added to this long list of rich experiences when I was co-captain of a team which walked 60kms to raise funds for the Peter Mac Cancer Centre. Our team of twenty nine people, including three cancer survivors (with one who is still presently undergoing intensive treatment trying to get to remission) raised nearly $71,000 dollars for research for women’s cancers.

The inaugural Melbourne Weekend to End Women’s Cancers saw 1401 walkers collectively raise 3.6 million dollars and this will allow the hospital where I will soon be undertaking my fourth surgery, to set up a program for women with advanced (stage IV) disease amongst many other great research initiatives.  And although the weekend itself, won’t ‘end’ cancer, it is incredibly important for the survivors of cancer to walk the journey and important for family members and friends who have lost loved ones.

Here is a snippet of the weekend.   Thankyou to our youngest team member Daisy, for capturing these moments from the weekend and putting together this video. You’re awesome!

There are too many magic moments to write about.  So I will mention just a few.

It was a privilege to witness the bond of Mel’s family.  The hilarious cousins, the ‘passionate’ mum and sisters, the caring brother, the proud father, the supportive uncles and aunts, the beautiful workmates and our friends who had all put their hand up and said to Mel and I through their actions “We will walk with you and we will commit to raising $2,000 so we can’t walk alongside you”.  Many of those travelled large distances to be part of this walk and join “The Good Tittie Team”. The team name came about when Mel combined the name of our blogs, “I Got the Good Cancer” and “Shitty Tittie Bang Bang”. How our team came to fruition was documented by Mel here.

The gestures of love and support were indeed profound on this weekend.

Watching the strength of my friend who after seven months of chemotherapy and without yet being in remission was mind blowingly inspiring. Straight from her previous round of chemotherapy, Mel walked the majority of the first day’s 30km. When she needed to rest, there was no shortage of people to push her in the wheelchair, her brother, her cousins, her sister, her friends. Many took turns. Running down some narrow streets in Toorak with Mel’s brother and I pushing her in the chair and doing wheelies and inspecting the chair to see if we had damaged it is something I will never forget. Seeing the smile on her face throughout these days was an absolute highlight.

Despite the crippling pain in my feet from walking 60km’s on concrete and bitumen, for the most part, I throughly enjoyed moving on foot through some of Melbourne’s magnificent suburbs, passed mixed architectural eras, gardens and impressive fences and parks. Stumbling along the drink stands set up by children out the front of their houses,  seeing pink ribbons tied to the fronts of fences or the slabs of water bottles left below a single flower tied to garden gates.  Being cheered on by passers by, or having random women come up to us while walking and offer a hug and tell me they too are a cancer survivor, or they understand because have lost someone close.  It’s pretty clear from the many responses from the public we had whilst walking that cancer bites deeply in our community.

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There were several “This Is Your Life” type moments that caused me to burst into tears to the amusement of my friends.

The most touching and poignant occurred when I watched a granddaughter and grandfather come together on a bridge ahead of me and embrace and then walk hand in hand together.  The granddaughter being Daisy, our youngest team member and her Grandfather. They each lost a incredibly special lady in their lives, a grandmother and wife, just the week before this walk to ovarian cancer. And here they were.

Likewise, the moment when I first saw my husband and children hiding behind a tree outside the National Gallery of Victoria also resulted in an outpouring of emotion. It’s been a long journey for us as a family. Having my five year old son walk parts of the course with us and seeing the excitement on his face of being part of the conversation as we trudged along was very special.  On the final day he walked the final 10kms with me. This journey, has been his reality too.

Passing the entrance to the Peter Mac Cancer Centre and high fiving some of the medical and research staff was a bit special too. Anytime I go near the hospital it’s for treatment and there is a certain amount of anxiety associated with that. It was great to be freed of that, doing something positive and giving back. Giving back to one of the hospitals that shared the role of prolonging my life.  This life.

Outside Peter Mac. Many times last year I arrived of this hospital with a feeling of trepidation at what layed ahead. It was great being able to hi-five staff from Peter Mac. It was great to be doing something positive.
Outside Peter Mac

Walking through a random street near Carnegie, we spotted two young woman casually sitting on a fence of an house.  As I got closer I recognised them as students I taught back in 2003.  They had come to walk part of the way with me and my team.  Just a few hundred metres later, in the same street, appeared one of my all time, favourite teachers, my year eleven Economics teacher.

In the street walking with my team where three extra women. One I last saw in 1992, who was my teacher, and then two I taught in 2003 who were my students. A real “This is your Life” experience if ever there was! After tears, laughter and some filling in of the years between over lunch they said goodbye and on we went.

Just two kilometres from the 60km finish, in a small Melbourne park, our team came back together and there appeared another primary school friend who Mel and I had not seen in nearly 20 years.  She lost her own mother to breast cancer many years ago. It was beautiful to hear her sweet voice after all of these years.

Late at night at the end of a long day of walking and long after all of my friends had gone back to their tents and hotels I was still wide awake. I looked at the dance floor and thought bugger it, I’m going to go and dance.  The next thing I knew I was joined by Mel’s mum and sister and we boogied to the final song of the night. They won’t realise how special that moment was to me, but the symbolism of that gesture was truly special.

Friends doing something great together.
Good friends doing something great together!

Catching up with our school friends was fantastic. The walk gave us many hours for conversation which is a rarity these days. There was loads of laughter and reminiscing about old times. There were also many new friendships that were solidified from the experience.  Special thanks goes to  Michelle, Josh, Anita, Annette, Sally, Jenny, Sarah, Haley, Naomi, Kristy, Lee, Renee and Jenny and to Mel’s extraordinary family for embracing me as one of their own.

It was an absolute privilege to be a part of this weekend, with these people, creating these memories. So I’d like to thank Mel for initiating the walk and inviting me to co-captain the team with her.  And to everyone who walked with The Good Tittie Team, supported us or donated to us thank you. A tremendous effort by all. Together, we achieved something incredibly meaningful.

Crossing the line at the end of day one. Credit: Lucas Wroe / Event Photos Australia
Crossing the line at the end of day one. Credit: Lucas Wroe / Event Photos Australia
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Some of the THE GOOD TITTIE TEAM on Princess Bridge Melbourne. Credit: Lucas Wroe / Event Photos Australia
breast cancer

Sucker Punched

Some of you will be following my school friend’s excellent blog called I Got The Good Cancer which details her experience as a Doctor with a Hodgkins lymphoma diagnosis. Where breast cancer has thousands of disease blog writers, Hodgkins Lymphoma bloggers are far fewer in number. 

I was hoping, as everyone was that Mel’s triumphant journey at beating Hodgkin’s Lymphoma was nearly complete.  But today she received results of a positive PET scan after six months of chemo, and after speaking with her on the phone I was a lost for words.  I didn’t know what to say to her apart from “I am sorry”.  In the course of our conversation I said some ridiculous things…

“You will get through the next phase!” and “Wow you might lose your hair with a more severe chemo and end up bald like me!”  or ” Gee that cancer card can really get a workout now!”

How very lame of me! And since I actually had cancer, you would think I would have an inkling of what to say at times like these. But no.

To be honest, I was in a bit of shock and wandered aimlessly all day. I felt sucker punched. Gutted for her. Disappointed. Angry. I felt the urge to get in my car and drive several hundred kilometres with my kids to her house which wouldn’t have been a useful thing for anyone.

I can’t help her process this news or take away her disappointment.  It’s not my cancer journey.

I never had to have an MRI or PET scan to see if the chemo I had was working or if the cancer was gone at the end of treatment. In Breast Cancer land, once treatment is finished you are sent on your merry way. Slice the cancer out, then treat with chemo and rads.   Come back if you feel unwell or have symptoms for more than two weeks they say.  Sure, there are the regular checkups with oncologists and surgeons just to see if your okay, listen to your lungs, feel the lymph nodes around the armpit and neck area, but thats about it. For many, there is massive anxiety when this active phase of treatment ends.  For months you just stumble around trying to come to terms with what has occurred and what lies ahead scared by every little symptom. Then it settles down and you get on with life.

But with Hodgkin’s Lymphoma the treatment course is quite different depending on the stage of disease and the presence of symptoms, with regular PET scans to monitor if the chemo is working it’s magic and shrinking the masses.

It’s hard to imagine what it must be like to undergo six months of chemo and then discover it hadn’t worked as planned,  after your family and friends are willing the results to be clear.  In your heart of hearts you know that the metabolic activity of cancer will still be there because as an astute doctor you can feel the nodes in your neck growing.

Mel's crazy visitor with rainbow coloured t-shirts,  streamers
Mel’s crazy visitor with rainbow coloured t-shirts and streamers.

And while feeling and sensing that the results you want aren’t the results you are likely to get, you have crazy people turning up to your final chemo session to give you a handmade T-shirt with rainbow coloured letters with the slogan  “I kicked the good cancer” and then they throw streamers at you when the last drop of your chemotherapy goes in.  Celebrating the end of your treatment and wishing you well for the next 50 years.  Mel blogged about this final chemo session here.

And then… bang bang!  The PET scan which shows that there is still cancer active in your nodes and chest, with a week to wait to find out what the next plan of attack is.

So in light of the fact I couldn’t say or do anything useful today, and embarrassed at my last attempt at t-shirt design, I have made my way back to the t-shirt slogan drawing board. Some are inspired from points in Mel’s blog and could apply now or down the track when the fu*ker really has been obliterated.

Lisey’s Lame Attempt at Hodgkin’s Lymphoma T-Shirt slogans round two.

**Come to think of it, Mel might be the only one to smile at some of these.

“I kicked The Good Cancer, it just took me a bit longer”

“ABVD can kiss my grits!”

“ABVD ACDC for every dyslexic hemotologist” 

“BEACOPP.  Should have followed the German Docs the first time.”

“Forget pre and post menopause.  Menopause is now!”

“Anticipatory nausea, oops there it is!”

“My hematologist made me feel like I just had a cold.  Whose laughing now!”

“Self Diagnosers Unite”

“Sucker Punched”

“Nauseated or nauseous, which one are you?”

“Keep calm, It’s just a positive PET scan.”

“PICC Schmick”

“It’s my PICC line and I’ll swim when I want to, swim when I want to”

and for later in the year…

“I really have kicked the good cancer.  No really I have.”

In true form, tonight Mel is telling jokes and reassuring people,  which is what any strong, kick arse, cancer patient does.  It’s full steam ahead for Mel in the planning of our 60km walk in four weeks, like the true boss that she is.   Mel has put so much effort into arranging our team for the Walk to End Womens Cancers for Peter Mac and will potentially now be undergoing more treatment at the time of it.

I don’t care what the walk organisers say,  I will push her in a wheelchair the whole way if she is keen.  I’m even thinking of buying this contraption below which caused me to stop on the side of the road this last weekend for a geezer. I think it can be decorated in Priscilla Queen of the Desert style. There is even a roof for shade and a place to store chemo meds.  I might have to get the riders seat fixed though.

Love you Mel x

I saw this is for sale on the weekend. So will buy this and ride Mel the sixty km's if I have to.

If you would like to donate to The Good Tittie Team click here, please select and donate to a team member who hasn’t yet reached their $2,000 dollar target. We desperately need all members to get to that magic number in order to walk.

Many thanks to all that have donated so far.

The Weekend to End Women’s Cancers benefits the Peter Mac Cancer Centre.  It is a 2-day, 60-kilometre walk through the neighbourhoods of Melbourne. Money raised through participation in and donating towards the weekend will help impact the lives of hundreds of thousands of women and their families, here in Australia, and right around the globe. Peter Mac shares its research discoveries and its expertise beyond the benefit of patients treated at Peter Mac, to healthcare organisations and research institutes around the world.  For information about the Walk to End Womens Cancers benefitting Peter Mac click here.

breast cancer

One Foot Forward

Last year I set out to run the Melbourne half marathon and in doing so raised money for The Cure Cancer Foundation of Australia which supports young cancer researchers.  I had lost my Dad to esophageal cancer four years prior.  I had taken control of my health and was fitter than I had been in years, running regular fun runs and competing in some triathlons.  My life could not have been better. Little did I know that when I ecstatically crossed the finish line of that half marathon race,  I already had a grade three aggressive tumour growing in my breast.

My first half marathon achievement
My first half marathon achievement, run with a grade three cancerous tumour in my breast!

The ten months that followed have been well documented on this blog.  From diagnosis to today, 2013 has included a lumpectomy, two separate mastectomies with reconstruction, months of FEC chemotherapy, the loss of my long hair and eyebrows (which might never return), nerve pain and numbness, physiotherapy and five weeks of radiotherapy to my chest and clavicle area.  Chemotherapy has put me into menopause at the age of 38. I may or may not snap out of it. But the hot flushes are ridiculous and don’t get me started about the chin hair that is appearing!

I am grateful for all the medical professionals who have treated me.  Without their intervention I might have only lived 18 months. The ongoing medical surveillance will continue for some time with breast surgeon reviews, oncological appointments, checks for lymphodema in my arm and ingesting Tamoxifen as part of the therapy to prevent oestrogen feeding the type of cancer that was removed. My life will never be the same again.

In the week following the conclusion of my active treatment for breast cancer, I am burnt from radiotherapy and looking forward to healing. But it is going to take a very long time.  The psychological impacts of having cancer are only understood by those who experience it.  The conclusion of active treatment is a bizarre place to be. The crazy wheel of survival has stopped spinning and I am finally in a place to ask what the hell has happened?  What will happen to me now?  What if it comes back?   It has been ten months since my diagnosis.  My dad was diagnosed and died within ten months.  I ask the question why am I still here and he isn’t given we both were stage 2 at diagnosis?

People expect you to immediately celebrate and get on with life.  I should be rejoicing!  I’m alive!  But to celebrate might jinx my circumstances.  My battle with the Dread Dragon I have written about throughout this year continues.  The fear of metastasis sits in the pit of my stomach and will need to be dealt with, packaged up and put somewhere out of reach.

Getting on with the life I had is not possible. Things are immensely different now. It must be about creating a new life, letting go of the old, and building the new. But it is going to take time, some time to work through the emotions and grief and heal.  People assume you are okay now. But I am discovering that this phase of finishing treatment might just as well be the most difficult part of the journey so far for myself and my family.

To add to this life altering and totally unexpected year, my dear friend from primary and high school was diagnosed with Hodgkins Lymphoma, six months to the day of my diagnosis.  I wrote about learning of this news in this blog.  Two chicks in their thirties, both with very young children, both getting cancer in the same year. Just. Plain. Wrong!

There is no doubt about it, cancer sucks!  It is indiscriminate, robbing children of mothers, taking grandmothers, aunties, sisters, daughters.  It takes the people we love, leaves lifelong scars for survivors, and burdens our society in ways we cannot measure. The psychological impacts of the effects of cancer are immense. The intergenerational effects of loss and suffering from cancer are a burden on families.

So here I find myself,  a participating and fundraising member of THE GOOD TITTIE TEAM, named by my friend Mel, after she called her blog “I Got The Good Cancer” in jest, and combined it with the “Tittie” from my blog title. We are walking together and our team is growing.

You can support me and my team by donating, or joining our team to walk and fundraise with us.

The Weekend to End Women’s Cancers benefits the Peter Mac Cancer Centre.  It is a 2-day, 60-kilometre walk through the neighbourhoods of Melbourne. Money raised through participation in and donating towards the weekend will help impact the lives of hundreds of thousands of women and their families, here in Australia, and right around the globe. Peter Mac shares its research discoveries and its expertise beyond the benefit of patients treated at Peter Mac, to healthcare organisations and research institutes around the world.  For information about the Walk to End Womens Cancers benefitting Peter Mac click here.

To support me and donate to my fundraising page, click here

Many, many thanks for your support.

Lisey

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