I could have been quicker at responding to a slight cough and clearing of the throat during the pre Xmas  summer of 2021 – 2022 but didn’t, we were coming out of Covid-19 travel restrictions were being lifted and I  wanted to celebrate Xmas and a new year, without a worry. 

I was getting a weird metallic taste in my mouth and visited my dentist twice, had a hygienist treatment twice,  had a tooth tweaked and an overhang shaved off one when away on holiday, had a chiropractor do a body  neck reset, revisited my dentist and then had a tooth removed, the dentist could find nothing out of the  ordinary but suggested a periodontist option. 

Eventually I followed up with my GP in February 2022 and was prescribed antibiotics but this didn’t seem to  help, then in March 2022 I got Covid-19, followed by a cold and when feeling for my glands, I found a lump on  the right side of my throat. I returned to the doctor and was offered a private a ENT specialist referral but  wasn’t really aware of what was going on and said just put me through the hospital system. There was still an  overhang in precautions in doctors rooms, at lab tests and hospitals of Covid-19 and things were slow. 

I was booked in to a lab test but the nurse specialist refused to give me a biopsy without ultrasound and there  followed a time lapse before I was offered an appointment at hospital and given a review, it was now August  2022, an ultrasound and a biopsy and a follow up appointment with a surgeon shared the unfortunate news of  “it could be worse” 

The attending surgeon Kevin Smith who was the registrar surgeon lead at North Shore hospital head and neck  suggested he’d like to perform a preliminary IAU (investigation under anesthesia). I informed him I had some  “surgery only” medical insurance and was then transferred from public to private care. 

Once I heard his intentions, I started a lot of research, how, what, etc. and loading myself with vitamin C as I  knew previously from my work as a videographer filming doctors seminars, vitamin C was important in post  operation recovery, I was also very fortunate to also have a friend who manufactures Alpha lipid colostrum and  he was sending me cans of pure colostrum which I was loading bulk into me for nutrition and fatten up abit. Colostrum has been now shown to have benefits in nutrition for cancer patients. 

Discovery provided I had HPV cancer and a tumor on one of my tonsils and it had drained into a lymph node  in my throat. After all the follow on tests – CT scan, MRI, pet scan, digital 3D mouth scan, prosthodontist  checkup, hearing test, oral surgeon meeting, three throat surgeon meets and a lot of paperwork, things got  underway at the beginning of October 2022. 

Firstly the prosthodontist had informed me I had 8 teeth that were ruptured or had been over filled and were  only holding together from the amalgam through all the previous years from different dentists. I was told they  wouldn’t survive and would fall out post the radiation. Radiation effects the jaw bone and they wouldn’t be able  to do any recovery post operation. Options going forward were no teeth and soft food for the future or invest in  implants. I cashed up my savings and had a five hour operation for the removal and insert of implants under  anesthesia. My “surgery only” medical insurance with Southern Cross covered the removal, but not the new  implants and as I wasn’t going to be running away anywhere in the near future, the savings went into my  mouth. We all call them “life savings” but it’s not till you reverse it they become “saving life” 

This was early October 2022, two weeks prior to the planned surgery and it had to be fast tracked to allow  stitches to settle and the mouth to recover best it could before the forthcoming main surgery of 10 hours to  open me up and cutaway and remove as much of the cancer as possible, remove the lymph nodes and a  

facial chin flap reconstruction to cover the hole where the lymph node had attached itself to my throat. I got a  chin lift from it as a bonus. 

I recovered well after surgery although very swollen and my November 2022 was a pleasant month around the  house, in the garden etc. I was informed they got what they could, although there was concern the cancer may  have traveled up behind my ear into the carotid artery. I was told this is a no go area and the scans would  determine the outcome – chemotherapy and radiation was imminent. 

Next was the CT scan and mask fitting at radiology, then the peg feeding tube was installed. Chemo time was  close.  

Its now early December 2022. Fortunately, I only had two 6 hour chemo sessions, one every three weeks of  cisplatin (not an ideal drug as has resulted in giving me white noise constantly in my ears) these really  knocked me. 

I felt great at first but discovered that it was because of the steroids. After day 5 it was misery with lots of  nausea and I had also started radiation at this time. Radiation was the easier part although it really brought on  the fatigue. 

The so called summer came and went through December and then into January 2023, I went nowhere apart  from to radiation, I had great support from my partner who took all her holiday and any sick leave due to care  for me through my ordeal, as well as three friends who gave her an occasional break from the daily drive to  radiation or to just sit with me. 

Although I did lose weight initially post the operation, I did what the nurses said, I took what they  recommended, I followed their every suggestion, I used the therabite regularly to get my mouth opening again,  I did regular neck stretches and did built my weight back up to being now only 6kg lighter than pre surgery, I  attended all of the post physiotherapist lymphedema treatments and when they ran out, I learnt how to do it  the best I could myself, I now pay privately once a month for a lymphedema massage (which I recommend to  soften the scar tissue) and still to this day I’m consuming 2 x the Ensure daily in a blend with fruit, vitamins and  Colostrum. 

I was very week, fatigued, sleeping a lot, felt sick often and just hoped it would all work out as I progressed  through the treatment. As I mentioned earlier I was fortunate to have although expensive some medical  insurance that I’d kept paying and to that end the medical support at Mercy Ascot hospital, ARO radiation, my  surgeon, ENT, the physiotherapists and all others not mentioned, has been what got me through, as it will you  if your on this journey. It’s now just over a year since the surgery as I update this original blog, I’m still being  well cared for from a distance, the CT scans have so far come back negative. I’ve gotten stronger, but not as I  once was. I wonder if I will ever walk another Camino across Spain again (I plan to, although only shorter  ones) I pace myself now and need no excuse to chill more, I have a different understanding and respect of  individuals cursed with what cancer does in one’s life and the changes one must apply going forward. But it’s  not going to stop me, nor should it stop you! 

So hopefully here’s what I discovered on my journey, what worked for me and will share now – get really organized before you start. 

Insist on the stomach peg option if recommended, this helped to provide nutrition intake with my meds as well  as protein and lets the throat really recover. 

From the hospital get bunches of green mouth swabs and a few spit/sick bowls to assist with the mucus you  will get. You will likely be spitting up a lot and I spent a lot of time rinsing my mouth and removing mucus in the  bathroom. 

Getting the mucus out was a priority for feeling better. I learnt quickly and by using both ends of the swabs  with hot water and using my fingers, I was able to pull out the mucus and get the best overall result. Although I  was occasionally hitting the gag part of my throat and was trying to throw up, I persevered. If you’re on the  Ensure Plus drink do this prior to any food intake. 

Get all your meds prescribed in a suspension liquid format to mix with the Ensure or crush them and mix them  in a glass for consumption via the peg. I didn’t have much food via mouth for nearly two months, as everything  tasted like cardboard. I tried to laugh and joked (throw away the pizza and give me the box) 

When I did finally try, although small steps, it was Weetabix with warm milk and eventually fish bites with  avocados and won ton or noodle soups were my go too. 

If on the peg stomach feeder, get plenty of the 60mm purple syringes (they last about a week before they get  too clogged and tight to use). Get your scripts sent to your local chemist for delivery. I was supplied boxes of  Ensure and with the great help of my partner, we figured out away and it became a team effort feeding me. 

I sat back with a towel on my lap, whilst she pumped in via syringe 2 x water, 2 x the Ensure plus any meds  mixed in followed by 2 x more water every time – it was 6 times daily. She also did all the driving to radiation  and collecting of meds. If she was out or at work, I did the best to feed myself. I was very fatigued at this time. 

Get bicarbonate soda and salt and mix together a decent bowl, keep in the bathroom and add a teaspoon with  warm water and rinse and gargle often. 

Set up an alarm schedule on your phone for when to take any meds and the Ensure if you get a peg stomach  feeder installed. Mine is set to go off at 8 am, 12 noon, 4 pm, 8 pm and 10 pm. Plan your meds so you get full  coverage. I was prescribed gabapentin, paracetamol and mild tramadol 3 times a day, the gabapentin was the  

main pain relief. This was 8 am, 4 pm and before bed all with Ensure Plus. I shared the remaining pain relief  across the time frame as roll over pain relief. I repeat get all the meds you can in a liquid suspension form. 

Get small syringes 30mm to measure any liquid meds. I used a shot glass as a measure. 

Get a cloth shopping bag (always ready) to carry with you to radiation treatments with a swab stick or two,  tissues, a spit bowl, some face masks, your radiation schedule booklet, a water bottle and a good book to read  etc. You will have plenty of down time. 

You will likely be fatigued and not able to do much. Cooking, washing, cleaning etc will need to be delegated  to someone else. I also got my partner to buy an eye sleeping mask and retired to bed in the afternoon for 2/3  hours. Most nights I was in bed again by 8 pm and I found sleeping sitting up the most comfortable. 

I was recommended to hire a humidifier. If didn’t help me. I found it to do the opposite and it dried me out and  returned it after the 2nd day. Eventually after much email persuasion they credited back the two months I’d  paid. 

Instead I bought a nebuliser from the life pharmacy chemist for about $130 and found that was a better option.  I believe you can get them via the public hospital system, or rent them, so do ask. 

For my teeth I was recommended a water pick and purchased a Colgate brand at about $100, it’s most  worthwhile to clean and rinse the food rudiments left behind, still use it after every meal. 

So there you go, my story as it is. I hope there’s something of use here, a possible takeaway piece to help you  also.