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).
As a gentle provocateur of positive change,