During the last month, we have taken a healing journey to Tasmania's north-west and to the south-east, Marion Bay, a small community south of Maria Island. Our cottage by the sea is perfectly situated a few minutes' walk to the beach. Often just with seabirds for company, including the tiny godwits/ whimbrels that annually migrate nearly 10,000 kilometres from the Arctic Circle to this special seascape, my goal was to walk greater distances each day. Starting with half-hour stints, I increased to two hours. The beach is about five kilometres long and it is refreshing to walk on the hard sand at waters'edge.
With lots of rest, reading and starting to eat more by mouth, I could feel myself slowly coming back to 'normal'.
There is no fast fix for the post recovery period, and I was glad when the Peter Mac dieticians arranged for Nestle to courier more packs of Resource.2 nutritional drink to my brother's house in Hobart. I am not coughing so much; the excess mucus has subsided, replaced by dry mouth syndrome. I am off all medications, but my appetite and taste are limited. My stomach is not performing well, and this will take some months yet to 'normalise'.
At my two month review meeting at Peter Mac this week, I was told that I am way ahead of the curve in terms of recovery and my feelings of lack of energy and appetite are commonly experienced. I have lost just over 10 kilos since treatment commenced in July.
My goal this month is to wean myself off the PEG direct to stomach feeds, so that the PEG tube can be removed in December. Hopefully, I will start to put a bit of weight back on.
More healing time with family in Sydney this month, but no swimming, running, or vigorous exercise yet.
The lesson is to be kind and gentle to myself, and thankful that I have a kind, gentle and patient partner, helping me through this healing journey. Thank you also to family and friends for your special support.
In June I was diagnosed with oropharyngeal cancer, located at the base of the tongue, metastasised to my right cervical lymph nodes. After seven weeks of targeted radiotherapy, five days a week, and eight weekly doses of chemotherapy drug 'cetuximab' at the world class Peter Mac Cancer Centre, Melbourne, how do I feel?
I am glad the treatment is over, and felt very emotional, as if I had run a huge marathon for two months. But those treatment days had structure, so now I need to be disciplined to create structure and goals for every day.
EATING, SWALLOWING ARE STILL DIFFICULT
Three weeks after treatment, I am not taking very much by mouth. But my oncologist says "You are doing great! Some people can't manage even baby portions. There will still be some discomfort for weeks to come."
David, my husband is very patient, giving me what I need by the PEG tube and I manage what I can by mouth. He makes special smoothies with RAW protein powder, supplemented by Nestle Resource 2 supplied to us by Peter Mac. Every day, I can feel my mouth and throat get a little better. I just want to go to sleep and wake up to find the bad dream is finished. I can eat. I can taste. I can swallow. Tomorrow, please.
PREPARING FOR A TRIP
I hope we are not too premature. Next week, we plan to go to Tasmania for a month before the two month review - to walk some long, unspoilt, quiet beaches and get strong again. I hope my mouth and throat make a dramatic improvement this week. The outside of my neck is almost healed
We ventured to Cinema Nova to see the delightfully magnificent Judy Dench in Victoria and Abdul, on a quiet day. With only six others in the audience, I didn't feel too embarrassed by my occasional coughing and spluttering.
The Kathleen Syme Library and Community Centre has been a great source of reading material, with newly released books quickly available. I've been making a list of my reading- is it random picks of new and old books, or is there a pattern? Will review that next time!
Lygon Lodge, 220 Lygon St is the perfect long stay accommodation, with sunny, north-facing rooms each with a balcony, kitchenette, comfortable Queen size bed, plenty of cupboard space, desk, wifi and a sofa bed. There is a range of rooms- single/ twin share, standard and larger suites. Given its proximity to Peter Mac Cancer Centre, it is very convenient and comfortable and with its friendly staff is the perfect home away from home. Lygon Street is famous for its wide range of delightful restaurants and shopping. There is peaceful green space close by, with just ten minutes to the Carlton Gardens next to the Melbourne Museum and the Royal Exhibition Building.
Thank you to family and friends who have visited, written to me and cheered me on! Getting there!
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
As a gentle provocateur of positive change,