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.

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… what happens next.