A birthday I never want to repeat 2019

June 2019 – September 2019

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…

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.