Hello, dear readers, family, friends, students, colleagues,
This is the fifth in my series on HNC (Head and Neck Cancer). It is a first hand account of being a (patient) patient. I was in Indonesia on a volunteer teaching project when I returned to Melbourne Australia for investigation of a lump on my neck. Turns out that I have oropharyngeal squamous cell carcinoma, located at the base (back of tongue) and metastasised to my right cervical lymph nodes. Stage IV.
Quite serious, but can be kicked out.
Calling all my favourite women super heroines to kick bully butts hard- Come in Emma Peel- Avengers; Lara Croft, Wonder Woman, Princess Leia, Spiderwoman, Bat Girl, Super Woman, Xena and all. Plus magic from Cinderella's Fairy Godmother, and Tinkerbell...
So many times I have walked away from workplace bullies and toxic people...
BUT, I cannot walk away from tongue cancer.
There is only one way to deal with it: face it, trust and follow the instructions from the good doctors and staff at Peter Mac. They pack a mighty punch. Kerpow!
Your prayers and well wishes do wonders to my spirit too.
Another 3-4 weeks, and my winter of discontent, and that dip in the U-curve, will start to be an up-tick. Better believe it...
DCOUNTDOWN TEN DAYS:
I am now in the sixth week of an 8 week integrated chemotherapy-radiotherapy treatment at the world class state-of-the science-and-art Peter Mac Cancer Centre, Grattan St, Melbourne:
- : 8 doses of chemo-cetuximab on Tuesdays (one loading dose was given the week before radiotherapy started), followed by 35 doses of radiotherapy Monday-Friday.
At the beginning of this week, there were 10 days to go; now it is Wednesday, so one more dose of chemo next week, and with 28 radiotherapy treatments completed, just 7 more to go, finishing on 8 September. Whoo-hoo!
So what's new since last time?
Eating and swallowing are more difficult; so I'm taking extra liquid nutrition via the PEG tube. David's strawberry, banana, almond milk, honey and RAW pea-based protein powder, by PEG is much better (yes, I can still taste a bit via stomach- marginal reflux) than Nestles Resource-2 drink. Sorry Nestle, I have to be honest.
Can't believe I just ate a croissant with marmalade while writing this...and David out for a walk! Hee hee!
There is a bit more nausea, but combatted by taking more Pramin, anti-nausea before food, including PEG feeds. It's not nice to take 30 minutes to eat one small container of Yoplait yoghurt and then it regurgitates without much warning. Ugh (a little cry here)!
My weight is relatively stable. I lost a bit in Indonesia and was 69kgs on return to Oz. David fattened me up to 72.5kg at the beginning of treatment in July, and now I am sitting on 69.9kgs.
Yes! We can do this - together!
In the weekend, the front of my neck started to resemble a rock lobster, freshly boiled (not for public viewing), and then like a turkey's neck...then ouch- itchy, and peeling, flaking...so today, a new solution- Derma-eaze gel covered by a net gauze dressing, a frilled collar, held in place with a net band.
As you can see above, an Elizabethan collar look- resembling my (second) wedding day outfit, or more of a frilled lizard? What do you think?
Thank you to the radiotherapy nurse today for this smart fashion look.
The skin on my fingertips and elbows has cracked open, making writing by hand and on the computer a tad difficult, but Moo Goo and cotton gloves at night is helping to reverse this. The skin on my face is less spotty now too...smile:)
Perhaps it won't be too long to go out in public again. I am feeling mentally good, as the light is shining at the end of this marathon tunnel...
Yesterday we received our post-treatment review dates: 1, 2 weeks; 1 month; 2 month, 3 month, 6 month and 1 year review dates, so guess what? We can plan our interstate trips - Tassie for a while, Sydney, NSW and Queensland...coming to you soon!
SPECIAL SYSU VISITOR
Recently, one of my (many) star students from Sun Yat-sen University School of Tourism Management- Zhao RUO Nan (MANDY), now studying Events Management as part of a 2+2 BA program at University of Queensland visited with a treasure book full of handwritten, printed and decorated messages from classmates, other students and SYSU colleagues. I cried, tears of joy. We also spoke to Anthony Li Zikai via FaceTime in UC, Berkeley! Wow!When Mandy told me she and several others will graduate mid December, I immediately set this as a goal to be there In Brisbane.
I was at the beginning of this cohort's university learning journey in beautiful Zhuhai, Guangdong Province, PR China and Insha'Allah, God willing, if the Universe conspires with my will to be there, I shall be there to celebrate your sweet victory, for so it is also a little bit mine.
PS. Another student Lydia who also was in one of my first writing students at SYSU is now studying her Masters in Translation at the University of Melbourne, just around the corner. So looking forward to meeting her soon! Lots to be thankful for... it is still a beautiful world. Thank you, everyone... If you send me a personal message at firstname.lastname@example.org, I'll send you a personal reply.
Best wishes for your final exams dear students!
This is the fourth entry in my learning journey of HEAD NECK CANCER. I was fit, active, and in every way looked and felt healthy, except for a lump on my neck, that I put down to stress. This has turned out to be cancer that has jumped the boundaries of the primary cancer, located at the base-back of my tongue (oropharyngeal cancer STAGE IV). Fortunately this cancer is localised above my shoulders, is linked to the HP virus, and so the prognosis (outcomes) are expected to be good.
Everyone's cancer journey is unique. And the variations of cancer are diverse.
I am encouraged by hearing the detailed stories of two women friends with HNCs, of what they went through. Both were full of gratitude for the learning, for being in good medical hands, and the fact that their loving husbands drew closer and 'spoiled them silly'.
They reassessed what was important for them and adjusted their mindsets accordingly.
I hope that 2018 will bring a clean bill of health and a new time for action beyond my current world of cancer.
CANCER DOES NOT DISCRIMINATE
Anyone is a potential target for cancer, no matter your age, gender, skin colour, ethnicity.
Men have a 1 in 3 risk of some form of cancer to age 75; women 1 in 4 risk.
After age 75, both men and women have a 1 in 2 risk of cancer.
Across Australia, there are 367 new diagnoses of cancer every day.
That equates to 134,174 estimated new cases this year, excluding basal and squamous cell carcinomas of skin.
Just over half (54%) will be men, increasing to 71% males over the age of 60.
The most common types of cancer are breast cancer; colorectal-bowel cancer, prostate cancer and skin melanomas.
With increased education campaigns, the incidence of prostate cancer has declined.
The most common cause of cancer deaths are from lung, prostate, breast and pancreatic cancer.
With earlier diagnosis, the overall five year survival rates of all cancers has increased from 48% in 1984-1988 to 68% in 2009-2013.
The estimated incidence of HNC diagnosis in Australia in 2017 is 3,625 men and 1,330 women.
The estimated deaths from HNC in Australia in 2017 is: 777 men and 249 women.
Main causes of oropharyngeal cancer are:
Reference: Australian Institute of Health & Welfare Cancer Series No. 101. Cancer in Australia 2017.
HALF-WAY THROUGH TREATMENT
I have just passed the half-way mark for my treatment.
Today is Day 20/ 35, and I have just 3 more chemo Tuesdays remaining.
It is like I have been on a wildly swinging suspension bridge, and now I am settling into the routine of Monday-Friday treatment days and it is passing quickly.
I am still eating by mouth, although at times it is slow and painful.
Sometimes it feels like a big fat spiky toad is sitting at the back of my soft palate, trying to obstruct every swallow.
Sometimes I cough, and it is like a sudden spray of frogspawn wants to escape from my throat.
Sparkling mineral water is helpful to counteract this.
My weight is relatively stable, thanks to David's patience in preparation of suitable foods that will slip down easily and still be tasty.
I have a range of medication to deal with pain, nausea and mouth ulceration, including cocaine mouthwash and morphine if needed. My face is undergoing a bit of a skin peel, but I have to keep reminding myself, 'This too will pass.'
In three weeks, the treatment will continue its action, and three months later, I hope I can dare to say, I have overcome this bully monster attacking me.
Thank you for your prayers and messages of support. Thank you also to the professional and compassionate team at Peter Mac, walking beside their patients, hand-in-hand.
At the beginning of June I was diagnosed with SCCHNC STAGE IVA- Squamous Cell Carcinoma Head and Neck Cancer Advanced Stage, located at the base of my tongue and metastasized to my right cervical (neck) lymph glands.
After a series of tests- PET scans, MRI scans, CT scans, Ultrasound and biopsies, I became a patient at the state-of-the-art (and-science) Peter Mac Hospital in central Melbourne Victoria, Australia.
I was familiar with the name Peter Mac, as my Dad underwent a clinical trial of apheresis in the 1970s.
Sir Peter MacCallum, MC, FRSE, FRCPE (14 July 1885 – 4 March 1974) was a Scottish-born Australian oncologist and the co-founder of Victoria's Peter Mac Centre.
See https://en.wikipedia.org/wiki/Peter_MacCallum. Also see https://www.petermac.org/about
The new building has just celebrated its first birthday. Happy birthday, and thank you to all the partner organisations, specialist healthcare teams, financial supporters and volunteers for making this a world-class centre.
Stepping through the doors for the first time was overwhelming, with my emotions spinning from disbelief: What am I doing here? I have been a healthy person....to humbling gratitude that we have such a centre here, where I am , right here and now. Thank you.
This blog series, commenced early July 2017 is my attempt to learn and to educate, from a patient perspective about SCCHNC. Thank you for your reading, and support.
Left: the enquiries desk.
Below: As of Monday 24 July, I will descend the radiation therapy steps 35 times
( 5 days a week for 7 weeks)!
Preparing for treatment: The radiation therapy specialists are perfectionists in getting the CT scanning just right, and the custom-fit neck and head rest and mask made so that the therapy targets the same points each time, for 35 times over seven weeks.
The preparation felt like a heat therapy treatment and I could breathe easily through my nose
(or my mouth).
So I know I can do this... set up for about 20 minutes, then a few minutes of treatment ( 35 times).
Please join me in my journey of learning and discovery.
CT SCAN: A computed tomography (CT) scan uses X-rays to make detailed pictures of parts and structures inside your body
Thank goodness for these neat and discreet sick bags.
BELOW: An MRI scanner
Magnetic resonance imaging (MRI) uses large magnet and radio waves to look at organs and structures inside your body. It can be quite noisy inside, but cosy.
You can pretend you are going on your own space journey. I was given a set of headphones and could choose music for the journey. I chose Mozart...of course!
I am part of a clinical trial to test the difference between two different chemotherapy treatments combined with radiotherapy 'FOR GOOD PROGNOSIS locoregionally advanced HPV associated oropharyngeal SCC'.
Don't you love those words 'good prognosis'?
It means I am more likely to recover from this ordeal, than not.
And with your thoughts and prayers too, I will!
The following seven weeks will be like running a very tough marathon, and then some... as the treatment keeps working after this, and my new normal may take several months to arrive!
No! This is NOT my after recovery picture. Through a process called 'video fluoroscopy', we, or at least the speech pathologists could capture x-ray images of my swallowing-liquid, puree, and puree on bread. And we could see it all in motion too.
I had a hearing test too. Both my hearing and swallowing, as well as my tasting and voice may be affected during the treatment
READY FOR THE MARATHON
Guess I am as ready as I can be for the coming weeks. I have had my first loading chemo dose without ill effect- but with a few pre-medications- anti-nausea, anti-histamine and steroid to reduce side effects.
I'll tell you more about the PEG tube placed into my stomach
as a contingency plan for feeding directly into the stomach
should I not be able to eat due to the treatment.
The process is called Percutaneous Endoscopic Gastrostomy (PEG).
I feel as I have done 1,000 consecutive sit-ups. Ouch!
We are now close to Peter Mac, just 15 minutes' steady walk, in a light-filled, warm and sunny room
with cooking facilities.
So glad, David, my nearest and dearest, enjoys shopping and cooking, and making the best smoothies.
Will share some of his delicious recipes soon!
My favourite full-of-tricks and energetic Monkey King in the Ramayana performance at Uluwatu temple, Bali.
Two days later, on 1 June, I was on my way back to Melbourne, Australia, for further investigation of possible Head and Neck Cancer (HNC).
So now I am a participant-observer researcher in this unexpected learning journey.
My aim is to create awareness of what it means to have a diagnosis of HNC.
I also have a chance to observe collaborative and compassionate leadership in action at the Box Hill Hospital and the Peter MacCallum Cancer Centre, Melbourne.
My cancer has been diagnosed as squamous cell carcinoma (SCC) of the base (very back) of my tongue.
It was not visible via an ordinary oral examination and was asymptomatic until it metastasised (invaded) the cervical lymph nodes on the side of my neck. I put it down to a low grade infection and stress-related. I was totally ignorant of what this enlargement could be.
Cancer in this location is linked with tobacco or the HP (human papilloma virus). I have never smoked - not one cigarette. Ever! Or anything else...
The HP virus is also linked with cervical cancer. There is now a vaccine to protect against HP virus. See www.hpvvaccine.org.au
Michael Douglas, the Hollywood actor, and Julie McCrossin, ABC Presenter, also had HNCs linked with the HP virus. See Julie's story at www.targetingcancer.com.au
The good news is that the chances of recovery from HPV linked HNC are higher than from tobacco-related HNC.
After one month of diagnostic tests, including biopsies, CT, PET and MRI scans, I am preparing for a seven week, five days-a-week combined chemo/radiotherapy treatment at the world-class Peter MacCallum Cancer Centre in Melbourne, Victoria, Australia. See www.petermac.org
Preparing to make the mask in the radiotherapy treatment centre at Peter Mac.
This part of the process is comfortable, involving a CT scan, creating a special head and neck cushion moulded to your specific shape, dipping a flat plastic mesh into a warm bath to make it pliable and then ensuring an exact fit. It is easy to breathe, and I was visualising a special memory of a walk in rural Tuscany early Spring. It is critical for treatment to have perfectionists working with you so the treatment targets the exact same spot each time (35 times, 5 times a week, for 7 weeks).
Sunday April 2017, the Jakarta Post "Tourism Ministry highlights sustainable tourism in co-ordination meeting."
This is the United Nations International Year of Sustainable Tourism for Development.
China's Professor Bao Jigang and his dedicated team at the School of Tourism Management, Sun Yat-sen university, Guangzhou-Zhuhai campuses have led the way in establishing MCSTOs...Monitoring Centres for Sustainable Tourism Observatories with several successful collaborations with local governments and tourism service providers, for example, Yangshou since 2005, Zhangjiajie 2011, Huangshan 2011, Chengdu 2012 and Kanas 2012.
In the last year, five MCSTOs have been set up in Indonesia, with co-ordination from Bandung Institute of Technology, North Sumatra University, Gajah Mada University Yogyakarta, Udayana University, Bali and University of Mataram, Lombok. BIT, UGM and UNRAM have been recognized as MCSTOs by the United Nations World Tourism Organisation and are part of the International Network INSTOs.
This is great news, and thank you to my Chinese and Indonesian colleagues for the conversations and mutual learning about tourism in the context of sustainable development over many years.
Congratulations! And onwards...The journey continues
Things of consequence: creating possibility
Ordinary moments may lead us to moments of delighted surprise and things of consequence.
Homeward bound on a bus from Macquarie University to Sydney’s North-eastern beach suburbs, I fell into easy conversation with my handsome Colombian colleague. He was reading in English Marley and Me (John Grogan, 2005 Harper Collins) and gently recommended me to read Gabriel Garcia Marquez, who was awarded the Nobel Prize for Literature in 1982. I wasted little time in getting acquainted with the magic realism of One Hundred Years of Solitude, and Love in the Time of Cholera. Books are like mirrors in which we find inspiration for our living and deep reflections of real life.
In 1982, dialogue for peace began in Colombia. A Peace deal has finally been signed in 2016, bringing to an end more than fifty years of conflict. This doesn’t mean that conflict has disappeared, but that there are now different models for dialogue and negotiation.
The peace process seemed to be scuttled when a plebiscite held to ratify the peace agreement with FARC resulted in more “no” votes than “yes”. It seemed that Garcia’s One Hundred Years of Solitude was still playing out in real-life, presenting contradictions with “a capacity for surprise”… “where no one knew where the limits of reality lay.”
President Juan Manuel Santos embarked on further dialogue to enhance the unity and reconciliation process. Being awarded the Nobel Peace Prize for 2016 brought these processes to a positive and comprehensive conclusion.
At the core of Colombia’s process are the victims and principles of human rights. It was refreshing to listen to BBC World Service’s The Inquiry this morning. Rather than gloom and doom, the four segments had a theme of “What went right in 2016?”
The first story was about Teresita Gaviria and the mothers of the disappeared –Madres de la Candelaria- who have gathered one day a week since the late 1990s – to protest the disappearance of their loved ones, and then began to visit and talk with the fighters, perpetrators of mass violence, in gaol. Gradually they became part of the formal peace process, ready to hear genuine apologies, to forgive and work for reconciliation and peace together.
In his Nobel Prize acceptance speech in December, on behalf of the Colombian people, President Santos pays tribute to Gabriel Garcia Marquez, as well as fellow Peace prize recipient Malala and the profound belief in change through education, and Nobel Literature prize recipient Bob Dylan’s “Blowing in the Wind”. “How many deaths does it take…?” In Colombia’s case, 220,000 deaths and 8 million displaced.
Santos declares that based on our common humanity and transforming reality through education it is possible to imagine a different way of living and to create possibility from what was once thought to be an impossibility. If this is so for Colombia, so too for Syria, South Sudan and others. “Perhaps more than ever before, we can now dare to imagine a world without war…”
Perhaps we might also strike up conversations with others in ordinary moments on the bus, on the street, in the workplace, in the home, to dissolve differences and build bridges of peace, to find our common humanity, one by one, with patience and persistence.
"Juan Manuel Santos - Nobel Lecture: Peace in Colombia: From the Impossible to the Possible".Nobelprize.org.Nobel Media AB 2014. Web. 1 Jan 2017. http://www.nobelprize.org/nobel_prizes/peace/laureates/2016/santos-lecture_en.html
BBC World Service, 2017, The Inquiry: What went right in 2016? 1 January, http://www.bbc.co.uk/programmes/p04ks9qk
Twin Towers from ferry to Ellis Island (Immigration Museum- former immigrant processing centre), New York November 1998.
On the 11 September 2001, my husband and I were just settling into a high school in the south of Guangdong province, PR China. The new academic year had just commenced, and we were joined by two young male teachers from USA. Our living quarters were fairly sparse and we had given up on television. We were listening to the radio when we first heard alarming breaking news coming from New York. We rushed next door to our young American teacher's apartment. His TV was working. We sat gob-smacked thinking what a terrible accident that a plane had crashed into one of the World Trade Centre's twin towers.
When we saw the second plane crash into the second tower, we knew it was no accident. Watching the drama unfold - CNN's windows faced onto the WTC - was a numbing and dumbfounding experience. When the third plane crashed into the Pentagon and the fourth into a field in Pennsylvania, the world held its collective breath. We knew that the world had irrevocably changed and a dark shadow loomed large.
It took some time for our Chinese colleagues to realise that this was not a fake. It was not a movie about the apocalypse. It was very horribly real and it has impacted all of us. It is not a clearcut ús versus them (the axis of evil -Iran, Iraq, North Korea), but the world seems to have become even more treacherous and barbaric.
With attacks on Iraq, then Afghanistan, even more terror in the form of ISIL (Daesh) is being unleashed in concerted attacks and by 'lone wolves' against Muslims and non-Muslims. Muslims are attacked and killed in greater numbers, but this doesn't get as much media attention as when non-Muslims are killed.
9-11 is now embedded in our collective memory - where were you on 9-11 - for those of us born last century -it will remain as darkly clear as the day Diana died; and the deaths of John F. Kennedy, Martin Luther King Jr. and Bobby Kennedy, and the first steps of Neil Armstrong on the moon. Are our journeys into space an attempt to escape from the mess we have made of things on Earth?
Rather than turn our backs on the world, what if we were to reach out to another, with a kind word, a smile, a gentle touch?
What if we sat down together and listened to each other's stories?
What if we put down our technology-enhanced gadgets and learned to communicate with each other again...to trust, to laugh, perhaps to love compassionately?
We could be fearless heroes on a personal quest: a film, a book and a death
This is the year of reading memoirs for me. Personal real-life stories are inspirational.
I finished 2015 reading Tim Winton’s Island: A memoir, followed by the former Irish President Mary Robinson’s Everybody Matters. Tim Winton always knew he wanted to be a writer, but Mary had planned to become a Catholic nun, following in her aunts’ footsteps. She became President of Ireland. Every path is personal and I am curious to find why and how we take the paths we do. [See blog 15 December]
ECO-WARRIORS ON A QUEST
When I read Stephen Romei’s [the Australian 9-10 January] review of Point Break, I wanted to see the movie for the theme of the heroic quest. It is a remake of a 1991 movie starring Keanu Reeves and appears to have cult status for many an eco-warrior, even though Romei doesn’t think much of the original. In the movie remake, there are many action shots of muscular, supremely fit, heavily tattooed men committing Robin Hood acts, stealing from the very rich to give to the poor, and spectacular acts of daring in raw Mother Nature. It is recommended not to follow their audacious surfing, trailbike riding, rock climbing, skydiving feats. Even if you know not fear, death will surely claim you before you complete the full eight requirements of the quest.
I have just finished reading Rory Stewart’s Occupational Hazards (Picador, 2006), a memoir of his time as a deputy governate coordinator in southern Iraq following the fall of Saddam Hussein. The blurb says that he then set up the Turquoise Mountain Foundation in Kabul and was its Director.
Rory who? What is he doing now? That is even more stunning. He has been a Professor at Harvard, and then returned to the UK, where he has been the Tory Member of Parliament for Cumbria since 2010. He is currently the Minister for the Environment and Rural Affairs. See http://www.rorystewart.co.uk. Before his role in Iraq, Rory walked 6000 miles across Iran, Afghanistan, Pakistan, India and Nepal. This journey is commemorated in his first book: The Places In Between. He had previously been with the British Foreign Service in Indonesia and Montenegro, Serbia, following a stint in the army Black Watch regiment, a tutor during summer for Princes Harry and William and a graduate of Oxford (Arts-Philosophy/Politics) and Eton. It has been suggested that Rory Stewart will be a future British Prime Minister. He is one to watch. Fearless, intellectual, adventurous.
Incidentally, Rory’s birthday is 3 January. Happy birthday!
CREATIVE INNOVATION QUEST
Another adventurous innovator in the field of music, David Bowie, turned 69 on 8 January, released a final farewell record ‘Dark Star’ and died of liver cancer two days later. A highly gifted and strong willed child, David Bowie, changed his family name from Jones to avoid confusion with Davy Jones of the Monkees. His first foray into bands and song writing was met with limited success. Trained in theatre and mime, he added these aspects to his act and took on the persona of Ziggy Stardust. This brought fame, but nearly pushed him over the edge, and into oblivion in the early seventies. David Bowie cleaned up his act. His life has been a series of reinventions, dazzling the world with his colourful innovation. His legacy as one of the most outstanding and enduring performers for five decades will long be remembered.
LOCAL QUESTS FOR LOCAL HEROES
These acts are hard ones to follow. Our personal circumstances constrain how we might live. Most of us have to be content with our local community, and aspire to be local heroes within and for that community. We can reinvent ourselves in our local space. Check out the nominees and past winners for the Australian of the Year Local heroes category: http://www.australianoftheyear.org.au/the-awards/award-categories/australias-local-hero.
Define your quest and go for it, even in your own backyard.That's more than good enough - that's great! We can do it together! Best wishes to all you heroes for 2016!
As a gentle provocateur of positive change,