As I write, it is the 15th day of December 2019. It has been over a year since my surgery and 10 months post chemotherapy and radiotherapy. It occured to me that I have some rather larger “holes” to fill in my cancer journey.
I had a PET scan on 29th May – 3 months post treatment. Medications included Methadone, Amitriptyline, Gabapentin, slow release anti inflammatories, paracetomol. Safe to say all eating had stopped as at the beginning of May 2019. My mouth and tongue were really tight, raw nerve endings, and mucous that wasn’t coming up or down. Eating or drinking anything was excrutiating, at ground zero I couldn’t even swallow my own saliva I was in that much pain. I also note that I undertook a job interview in the middle of the month! What was I thinking , clearly the drugs were doing their job. I arrived at the beginning of June to find that the PET and CT scans were clear. There was inflammation, but that was to be expected.
Trismus had set in, jaws clenched together, and the battle starts. Most adults can get three fingers in their mouth and I measured out the number of tongue depressors I’d need to get me back to full opening. 25 sticks as it happens, easier when you are on a cocktail of pain killers.
I was undertaking cold laser therapy on my dewlap ( the swelling under my chin) and it was healing the scaring on the inside. Lymphoedemia is common and the cold laser treatment replaced in many ways light massage. I kept at it and tried to keep hydrated.
June 23 – #week 16 post treatment and I was feeling very, very sick. I was faint, dizzy and had acute stabbing and shooting pain in my jaw . The pain was also moving down my throat and I could no longer eat pumpkin soup.
It is about now that I started to lose faith in myself and where I was headed. I had never experienced pain like it and I said to my oncologist, I simply can’t go on like this, what can we do ? We can DO Methadone !!! and so it was, week # 17 I started methadone – gradually increasing the dose, I should have known I’d take to that baby like a duck to water. The remainder of the month was fairly uneventful except my PEG fell out which involved a very quick ambulance trip into hospital and an over night stay to get a new one put back in the track.
Which brings us to August and exactly a week after my 54th birthday. I had had another PET scan on the 13th August and a nurse called me with results on the 15th August. We had discovered a “pocket” in my left jaw that led to exposed bone – the scaring and subsequent healing had been so dramatic it had pulled the flesh away from the bone and was the cause of my excrutiating pain. However I digress, back to the nurse.
I received a phone call and was I at home and was I alone?
I was told that the the treatment had not worked as they had liked. In fact it was worst than before and was particularly bad on the left side where the tumour had been. The other side was worst too apparently and that there was more residual cancer there but it had to be discussed in the MDT meeting. It’s not curable at this point, and she didn’t know life expectancy. We could potentially try immunotherapy – a new treatment. I was numb.
I sat with this information for a week. I called a couple of my best friends and they came straight over. We sat and discussed my options . Selling my property, cashing the super in, travelling the world. I have no idea how I got through that week. I was scheduled to see my surgeon a week later.
The next week I took my brother and a close friend to see my surgeon, it was a tense meeting. I had an endoscopy and Andrew said, Yvonne, I don’t think it is cancer. It is not behaving like cancer, but so we are 100% sure let’s do a biopsy. I was scheduled a week later at the RAH. I certainly had radiotherapy complications, necrosis being the main one. Turns out I was about to have a whole lot more. To be continued… what happens next.
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.
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.
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
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