I am ready to break up, we will just do a biopsy to make sure.

I had my fingers stuck in my ears, la la la laaaaa, no I don’t want to hear what you do in a biopsy to ascertain whether or not you got all the cancer in my throat and tonsils. You have prefaced this description by saying it is barbaric. Enough said.

May 2019 and I was 3 months post all my treatment. My bloods had held out for chemotherapy, I handled the “mask” ok during radiotherapy, in fact I use to fall asleep at times. I religiously slathered cream on my fried skin. By May 2nd all eating had stopped. I couldn’t manage anything. Nerve endings were raw, mucous wasn’t moving up or down, dewlap was tight and puffy and I was feeling really, really sick and flat. The pain at ground zero was excrutiating. I couldn’t swallow my own saliva. A dental visit discovered a pocket and what appeared to be exposed bone on my lower jaw. A PET scan was scheduled and I limped through on a cocktail of pain relief.

It turned out that the radiation was so intense it had torn away the flesh from my jaw bone. I was in the hurt locker – this was a time where I was meant to be improving.

Day 250 something of complete sh*t

To say it hurt was a massive understatement. The PET scan was clear and the CT scan revealed some inflammation. I had had, surgery, radiation and chemotherapy on a relatively very small space and inflammation was the least of my problems. During this time I was also undertaking cold laser treatment on my lymphodema. It was helping the healing of my scar tissue internally. Mid June and I was still in a very bad way, icecream hurt if that’s possible. I was using my PEG constantly for nutrition and nothing orally at all. No soup, smoothies or icecream. At this point, my medical team (oncologist) introduced Methadone. Slowly at first, increasing dosage to see how I would react. Well, it turns out, me and opioids who would have guessed. So I am now on methadone, amitriptyline, gabapentin, paracetamol and all through the PEG. Still I was in pain and I had to keep on top of it.

PEG replacement in Emergency at the RAH

In the middle of all of this I had to have a breast screen. I questioned whether or not with all the MRI’s and CT’s being undertaken was it necessary? Yes, it was and that came back clear. So I struggled through until July 2019, where the methadone basically made my life liveable. I slept really deeply, my coughing got a lot worst before it got better. I started to “eat” tiny amounts. Mainly cream and iceceam. My dentist didn’t want to give me Trental (a drug that increases blood flow to wound site) in case I had residual or more cancer. We did not know what we were dealing with so I had to wait until we had results back from yet another PET scan. Whilst I was waiting for my results my stomach PEG fell out of my stomach. It was early morning and I had felt faint and sick, not taking alot of notice because that was normal to feel that way. I was making the bed when I felt what was my cat’s tail between my legs. It wasn’t Rockets tail but the PEG and the end of the disintegrated balloon. So in I went via ambulance to Emergency to get my PEG put back in. You have a fifteen minute window until the track starts to heal over. We didn’t make it, so I was admitted over night and had the whole rig replaced again. There is a whole other story about this process involving syringes and feeds. To say it wasn’t straight forward is putting it mildly, suffice to say I was becoming an expert on PEGS.

I am a visual person so this helped me understand what was happening when I was trying to swallow. I marked where food and drink should go and where it shouldn’t.

Fast forward a couple of weeks and I received the results of the second PET scan – the journey at this point had been 10 very long months and I was going in for a biopsy to make 100% sure we were not dealing with anymore cancer. It was about this time I decided to take matters into my own hands and start seeing a Naturopath. Detail of which may be read here along with the results of the PET scan.

We are now in October of 2019. My healing is taking so long and I can’t swallow the Trental meds well and the side affects are making me feel sick. My oncologist visit resulted in me asking if I could be considered for Hyperbaric treatment. This treatment turned out to be the best thing for me. Six days a week for 6 weeks or 33 sessions in a hyperbaric chamber.

Hyperbaric essentially meant I was healing at a faster rate than under normal conditions. The oxygen levels are many times greater and it’s done in a diving chamber. I could feel the difference in a couple of days. It turned out to be my saviour. I finished Hypobaric mid November of 2019, in the end completing 29 sessions. I then had to have a colonoscopy as a test had showed some positive results. Yes doesn’t rain it pours. This day surgery just about tipped me over the edge. I was so sick of hospitals and not eating. Fasting and prepping for this was pretty easy. You can work that out yourself.

I rang the Royal Adelaide Hospital and asked for a swallow test. I wanted to know why I couldn’t swallow, was there something more going on. They booked me in and it is a straight forward process where you stand in front of an Xray whilst attempting to swallow different textures. Apart from the loss of 1/3rd of my tongue, there appeared to be no real swallow issues. The dark blobs below represent fluid and food and where they stick. Gravity was doing most of the work.

Still, I am not eating well and I am getting really sick of “eating” artificial food or more commonly known as “commercially prepared liquid enteral nutrition formulas”. I managed to eat a very small amount over Christmas and knew that something had to change, my second Christmas was slightly better than the one before, but I wanted this PEG gone permanently and was told 6 months at least. Another 6 months was really bad news. I had been in a relationship with this PEG for 12 months, it was time to break up.

What about exercise, CDF & Covid-19?

Exercise & Covid-19

Sunrise in the park for regular Steppers (Step into Life – Kensington Gardens)

Some actions are just automatic, getting up at the crack of dawn to put your running shoes on so you can join your equally weird friends in the pitch black at the local park, is one.

I have been doing this now on and off for 9 years with Step into Life Kensington Gardens. A pandemic changes everything, including outdoor exercise. The reason outdoor fitness is popular is because by its very nature it’s done in nature, where you get fresh air, watch the sun rise or set, as the case maybe, have greater exposure to vitamin D, burn more calories due to temperature regulation especially in the cooler months.

Spiderman pushups are no easier on the grass!

Local indoor fitness centres and gyms are closing, shutting doors due to Government restrictions, in Australia that happens today 24th March 2020.

Yoga studios are moving in the same direction and moving to on-line virtual classes where your downward dog is likely shared with your dog or cat in the comfort of your own home.

Outdoor exercise in a public park in Australia is still open to everyone, it’s fast becoming a different story in New York where it is quoted “Of people who are carrying on life as usual, he said, β€œIt is insensitive, arrogant, self-destructive, disrespectful to other people, and it has to stop, and it has to stop now.” #stopthespread

Keeping a 1.5m distance between clients

Here in Australia we can still enjoy group exercise as long as we follow the guidelines set out by the state and federal governments. Outdoor exercise is still permitted with self distancing measures being adhered, that is 1.5m between people.

This might explain why on my regular walk / run the other day there were considerably more people out on the oval exercising – the penny dropped, the gyms are shut and the PT’s have taken their clients “outside”.

I have always exercised, it is part of my DNA and I am pretty sure my fellow SIL (Steppers or Step into Life) friends are the same. Our outdoor exercise group not only provides physical activity but also much needed social interaction, mental support and general friendship bonds that become increasingly more difficult to forge as we age.

Recently there have been cancer diagnosis, house sales, house purchases, sick children the normalities of life and as an outdoor group we share these things and help each other through. It is really important whilst we physically ‘isolate’ to maintain good mental health practice, and for me that includes putting those running shoes on at the crack of dawn and meeting my group in the park.

So here are the rules for outdoor exercise, bring your own mat, exatube, weights and box gloves. Maintain a 1.5m distance from others and keep your waterbottle and personal belongings in a separate bag. Wash your hands before and certainly after your workout. Carry hand sanitiser and don’t share workout equipment.

You can maintain your exercise regime, and you can attend fitness classes outdoors. As they say in the army, just practice CDF. I’ll let you google that one.

A death sentence then it’s not.

My last post was written some time ago, a few months back when the pain I was experiencing was off the Richter scale.

Fast forward to August 2019 and for my birthday I received the results of my PET scan. It was my first 3 monthly scan and I was keen to know whether the surgery, Chemotherapy and Radiotherapy had done its job. So I asked the regular Oncology nurse to give me a call once the results had come in.

As it happens I was at my accountant the day the results came in. The nurse called me as I sat in my car after the appointment . Reading directly from the Benson report, I suggested she call me back when she’d had time to read it and make sense of it. So with that she hung up saying I’ll call you back in 10 minutes.

Time to reflect

Four hours later my phone rang, “are you at home she asked …Yes, I thought this isn’t good. Are you alone? Just tell me the result of the scan please. I was alone, as it happens.

My notes verbatim from the conversation went as follows: – The results indicate that it’s worse than better, it’s indicating that the areas are bigger and brighter than before, it’s worse on the left side where the surgery was done and the right hand side is worse again. This all needs to be discussed in the MDT specialist meeting but it appears there is more residual cancer there but does need further discussion. The treatment has not worked as we would have liked and it’s not curable at this point, we could try Immunotherapy and we are not sure of the life expectancy.

As you can imagine I was not sure how to take this information as I sat alone silently staring at the floor. What does this mean? what do I do? I was gob smacked, this, although serious, was meant to be a process to get rid of my cancer. I did the surgery, the chemo and the radiotherapy ( trust me you don’t do this unless you have to) and here they are telling me none of it has worked. I called a friend or two and they were at my side within minutes.

We sat and discussed my options. What options you have with a death sentence I am not sure, but mine involved spending my super and travelling to Greece to start with. We sat in my garden and pondered life, I pondered no life and how the hell do you stay motivated with this type of news. I called my various siblings and told them the news. Silence is what I remember most. That pause, gut wrenching silence of the abyss.

Another friend, who was parked on the side of the road in the country at the time said to me ” Who is this nurse to give you this information, over the phone no less?” I admit, the thought crossed my mind too. We cried, we talked, we sat with it. It turned out that I sat with it for a week and a half before seeing my surgeon. I took my brother and a friend to the appointment. In the interim other friends rallied and managed to get me an appointment with a well known Naturopath in town. Ian was booked up for nearly a year, I said well I’ll take your next available, I may not be alive by then, but pencil me in! The ‘who knows who’ wheels turned and I miraculously had an appointment next week. Thank you RW & DB x.

I kept exercising and the beach helped alot!

Not withstanding my head space, it was really interesting to see my blood under the microscope. Ian does the whole assessment of blood right there in front of you and explains the vitals and then how he’s going to help my immune system. I had at this point decided that OK, I have let the white coats do their bit, now I do mine. What was it about my immune system that allowed this to happen in the first place? We got to work on my blood and I got to work on my diet, remembering I have a stomach PEG and no way to administer food other than by a liquid form.

Back to my surgeon appointment, Andrew said “Don’t jump the gun Von, it doesn’t look like cancer he said, whilst gloved fingers probe the rear of my tongue. An endoscopy later he thinks it’s still just inflammation from surgery and radiotherapy but to make sure we will do another biopsy. Andrew did not sugar coat it he started to tell me what a biopsy would involve and I stopped him. It was barbaric, I was to find out much later it would put my recovery back months.

I can tell you the coffee after that appointment was pretty light hearted in comparison to how I had been the nearly two weeks prior. I had hope. A very tiny slither of hope.

I had a week to wait for more surgery. I had no idea what was about to happen. I thought I’d fought hard already, ha – that was just the preliminary warm up for what was about to transpire.

Nil by mouth, and by that I wasn’t expecting 6 months …

This, most definitely, was not on the bucket list for 2019 – for someone who loves food and all that it represents, life can be unbelievably unfair at times. Given my absolute lack of knowledge on this disease and the side affects – I will update where I can. Here’s my story …

I had managed to travel throughout Vietnam for 3 months aided with nasal spray, aspirin, high dose pain killers from home, anti inflammatories, anti hystemanes, antibiotics and nasal steroids. Somewhere in the back of mind I kept thinking “something is not right here” and despite numerous doctors visits both at home and overseas, I kept being told it’s chronic tonsillitis.

I went to hospital in Saigon and had an Endoscopy with an ENT specialist and was told it’s nothing sinister. At the time I recall saying to my family & friends that I was so relieved it wasn’t cancer. I had my ears cleaned, ate a lot of Strepsils and soldiered on.

I had spent so much time preparing and getting organised to live in Asia and to experience something different that being sick was certainly not part of the plan. I pushed on until the first VISA run. It was about this time I realised how tough a person can be, how much pain you can live with without having an answer, how much pain you will endure until you can’t.

Golden Bridge Danang

I had planned a month in Indonesia to set up my business and get some fresh air time away from Ho Chi Minh City. Thinking I would then return to Vietnam to start working on some food and hospitality activity I had put in to place with new contacts. I was tired and really running on empty and thought …perhaps I just need rest. Fast forward to mid October 2018 and I am lying pool side having a beer in Bali, weighing up work decisions when I discover that one of my nearest and dearest has had a heart attack back in Australia.

For whatever reason it jolted me into action, I immediately booked a flight home within the next 24 hours. I wasn’t thinking about me so much as thinking perhaps I could help at home. I was on that flight, excess luggage and no plan …other than to get home and see what I could do and what I could do about my very sore throat. I was thinking a tonsillectomy at worst. Better to do that in Australia if it came to that.

I arrived in Australia on Sunday morning and was in with my local GP by Tuesday morning. That week saw me in with an ENT specialist, PET Scan, MRI the list of “tests” goes on – but oh how efficient, how I thanked my stars I had private health insurance (surgeon/wait time) and that it all happened as fast as it possibly could. My friends rallied and made decisions for me, there is a lot of information and when the surgeon said “viral tonsil cancer” – squamous cells, biopsy will determine I had all but tuned out. This was meant to be a simple tonsillectomy in my mind. I was in denial.

I really liked my surgeon Andrew Foreman, what a job to have to tell people this outcome. I always had someone else with me, mostly my best mate of forty odd years, to take notes and pick up on all the detail I just wasn’t taking in. I recall saying “I just want the pain gone” – what do we do and in what order to make that happen? “

Surgery, then 6 weeks of radiotherapy and chemotherapy. Andrew removed the tumour through my mouth via a newly acquired robot at Calvary Hospital. A two part operation that involved not only removing the tumour but also removing 25-30 lymph nodes in my neck. For reasons beyond me, I thought this was going to be a walk in the park, I thought I’d be up kick boxing again in weeks and absolutely no thought given to not eating food again for a very long time.

A drain in my neck, a stiff shoulder and an asymmetrical everything I was later to find out. I spent twenty days in Calvary and a week of that in ICU. I have never been in hospital before and certainly never had an operation. It was so new to me, I didn’t understand anything and no idea what to expect. This is a girl who fainted when she had her ears pierced. I had never broken anything, never been sick, no surgery no operation … no freedom. I was scared.

Saline Humidifiers became my new best friend.

Andrew removed a tumour roughly 19x15x17mm although he suspected it was bigger, and it was when he got in there. My left tonsil removed, my right tonsil removed and 1/3rd of my tongue. When I woke up in recovery I couldn’t speak, couldn’t swallow and awoke in the dark. It was very frightening, nursing staff kept asking me if I was alright? Can I get you something? I didn’t know it at the time but I was in shock. I just sat there not knowing what to do, couldn’t move, couldn’t communicate. I had a nasal feeder, a catheter, a lymph node drain, surgical stockings, spit bags ..it was all so foreign to me and I was a long way from even getting to the ward.

So many bodily functions were taken away from me. You know you are incapacitated when nursing staff start doing everything for you and I mean everything. You just have to swallow pride and let them. For those that know me and know I am pretty independent this came as a major shock to me. Universally this is known as Head and Neck cancer, not throat cancer and the major difference between this and the better known Breast and Prostate cancer is that you can’t eat. Everything you consume is through a nasal feeder and or a peg in the stomach. This news did not sit well with me and I was frightened. What if ? – Surely you can’t live your life with a stomach peg? Turns out you can and turns out I refuse to.

Getting through Christmas Day with a stomach peg turns out to be a challenge in itself … one I hope not to repeat in 2019.


Robotic Trans oral surgery
Oropharyngectomy and right tonsillectomy , L) neck dissection and selective arterial ligation.

Transoral robotic surgery is a procedure to remove mouth and throat cancers in which a surgeon uses a sophisticated, computer-enhanced system to guide the surgical tools.
Transoral robotic surgery gives the surgeon an enhanced view of the cancer and surrounding tissue. Using a robotic system to guide the surgical tools allows for more-precise movements in tiny spaces and the capability to work around corners.


When compared with more-traditional procedures, transoral robotic surgery tends to result in a quicker recovery and fewer complications for people with mouth and throat cancers.By Mayo Clinic Staff

This scar and Dewlap I hope to manage with hot yoga looking down the track …

It is the end of summer – March 1 2019, I have been in treatment for an entire season. I missed summer in Australia and as at March 1, 2019 I am now officially finished my treatment. Radio therapy and Chemo therapy. I had six cycles of Cisplatin and no interruptions – my magnesium levels held out too, I am really grateful for that because that bit really hurt. Felt like someone whacking my forearm with a base ball bat. The radiation was relentless. My blood platelets held out and getting bloods to the oncologist proved tricky for me – Code Blue Princess (CBP) I named myself. I opted not to have a port put in but a cannular every week for blood, ready for the Monday chemo session.

Lack of veins, dehydration, being a massive scaredy cat all contributed to CBP – in the end I opted (begged with tears) for Day Care centre to do my bloods rather than the ‘normal way’…

Every day (except for weekends) they radiate/burn you with pin point accuracy. Before they start the radiation they make you a mask to ensure they are only treating the areas that require treatment. I brought my mask home after the final session. I am going to grow succulents in it.

So the end of treatment I convalesce, they say the two weeks immediately following treatment is the worst, they weren’t wrong. In between manic bouts of acid reflux, heat burn, nausea, peeling skin that blisters, no food, no appetite and mucous thick enough to build a mud brick house … you try and get better. I have lost nearly 7 kgs since leaving Vietnam, but maintaining at the moment. No alcohol, caffeine for over 3 months and that also means no food either, I was managing soup for a while but that all goes backwards during radiotherapy and chemo. I have no appetite and the smell of cooking food is hit and miss with me. Today is day 4 post treatment.

I have had better days but the worst day was day 3 for me. I continue to look to the horizon and continue to work on plan B. It will show its hand in good time. To my wonderful friends both old and new and my family – thank you from the bottom of my heart for your cards, flowers, notes of encouragement, taxi services, entertainment, and general love you have cast my way. I still need plenty of time to get better and to be able to share pork crackling, a lamb burger with beetroot relish, pepperoni pizza (kidding I’ll never be able to eat that again) crusty bread with butter, toast and a cup of tea. Milestones to work towards

Namaste x