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.
As a gentle provocateur of positive change,