May I have some more serviettes please? Week # 4 post treatment.

Today marks my mum’s 89th birthday and I am eternally grateful that she has been here for this most horrendous journey of mine with Head and Neck Cancer. This week marks week four post treatment. Although I have received conflicting information regarding what to expect, mostly it’s been accurate but to be fair, recuperation is different for everybody. The first two weeks after the radio and chemo therapy finished were appalling. They did not sugar coat it, and you just have to get through it best you can. Hold your breath and run straight towards it, keep going until you have to surface for air again.

I stayed with mum for those two weeks. Ideal because we both sat in very comfortable leather armchairs watching Edie McGuire followed by Channel Nine News. Leg rugs and soft food (or in my case no food) and lights out by 8pm. I suddenly realised how much closer to a nursing home I was getting. Still, it allowed me to spend time with mum and I was happy to sleep during the day and most of the night except for regular spitting into an old honey bucket every five minutes, I slept well with the help of some opioid.

For those to go through this it’s hard to explain how you are going to feel, I had this clawing tightness in my throat, gagging sensations that resulted in vomiting (a little not bucket loads) and the tricky part is to look after your teeth. Mouth sores and ulcers (I was lucky and did not suffer too badly) I kept up regular swilling of bicarb soda. I kept flossing and did what the specialist dentist told me to do religiously. My dentist Sharon gave me a scraper – best utensil ever.

Soft tooth brush, scraper and Christmas Tree flossing

Food wise I have dabbled with soup, smoothies ( which I couldn’t stand before this disease let alone now!) pulverised vegetables and pasta. Sounds appetising huh? then you eventually have no taste, or rather for me nothing tasted as it should. I had an iced coffee with ice-cream in it – I could tell it was cold but it could have been plaster for all I knew and could taste. I appeared to have lost the ability to taste ‘sweet’ and I don’t trust myself to cook because what I can taste and what it actually tastes like are two very different things. I have read that venturing out to public eating places can be challenging. No one these days makes good soup – well they do, but they are few and far between. I think I want something to eat, I can feel my appetite then ‘poof’ nothing. So mostly I dine at the home based buffet which is below.

Home based buffet where you can go back as many times as you like!

Week # 5 and now my saliva glands and taste buds are taking a hit. My surgery scar is healing nicely and my spit bucket has decreased in size. I also decided to go back to my exercise group for company and fresh air as much as any kind of disciplinary exercise. I have lost 8/9 kgs since I came back to Australia. In that sense I feel good but it’s a hell of a way to lose those pesky last 5 kilos. I hope to take up running and kick boxing again in the not too distant future, in the meantime I am taking it day by day. One day is good, the next it’s all I can do to get out of bed.

Step into Life Kensington Gardens – My fellow SIL comrades helped me through treatment and for that I am eternally grateful.

So we now head for week #6 with my eye on week #8 to see how much progress we have made. Something is new and different every day and I ventured out to have a fresh juice with a friend a week back and well, let’s just say that was not that successful. Although I discovered that I could swallow more than previously I had to have 3 big glasses to ensure I could add enough ice to my fruit juice to get it down ( the colder the better), watermelon plays havoc with your tongue and tastebuds, and I pretty much depleted their stash of serviettes for wiping, mopping up and generally making me look as though I had a two year old with me. Suffice to say that the G&T I tried at my local tasted like kerosene and is something I wont be trying again in a hurry. Ce La Vie.

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