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…

My Shoes no longer fit me…

Waiting for food at a restaurant in Danang (Vietnam) one of the last meals I can remember whilst being away.

People are very well meaning and can sympathise but rarely empathise, it’s almost impossible, which for me makes it so hard…hard to explain and hard for others to comprehend.”

Since I started this journey over a year ago (when I noticed symptoms) the last few weeks have shown me not only the strength within myself but also the strength within others as they watch me battle through the never ending changes in my body after surgery, chemotherapy and radiotherapy. I have never been sick, other than colds, tonsillitis and the occasional stomach upset, headache. I certainly have never spent time in hospital, or at the doctors (GP) other than the normal things women have to do like smear tests. We all know how much we look forward to those, and like me, I try to get them done and out of the way.

This disease allows for non of that quickness, no let’s just get on with this and put it behind us type of mentality, not in the short term anyway, and for a person whose patience is not one of their stronger character traits, it makes me very anxious. I thought by end of May 2019, I would have lost the peg in my stomach and be eating. I am so far away from that and I recall lying in bed at Calvary Hospital six months ago thinking how good it will be to have a glass of wine and plate of food. How good to spend Christmas 2019 with cold ham and salad.

So here I am Tuesday, spending time working on Plan B, with pain that as now necessitated the use of three different pain killers for different pain.

The type of pain where you get out of bed at 11pm and 3 am to have more drugs because the pain has woken you up. Last visit to the Oncologist told me I now have Lymphoedema inside as well as outside my throat, an ulcer and the surgery has scarring and fibroids developing, and a whole bunch of raw nerve endings that are dancing around my head and neck at regular intervals.

To eat anything soft or drink anything other than water I must gargle with Tetracain- an expensive numbing solution made to bespoke specifications. This numbing also means I can’t feel the food and whether or not I have swallowed it. Still, it allowed me to eat five spoons of baby food last Friday night. So there you have it, you don’t realise how “social” eating and drinking are until you can’t do either anymore. It was a very big part of my life.

Outdoor fitness has meant I still can join in some social activity. Without that I’d be very lost and living as a hermit. This disease has changed my whole life in so many ways.

My old life and social habits have gone and along with it some “friends” – I am trying to understand why others can’t understand what I am going through, understand that every single day and activity requires planning and in some cases medication, fluids and food. How I was before has gone and to put it simply, physically not possible any more. It makes you very aware of everything. It makes you aware of the smallest detail and how you choose to tackle things. That person has gone I have grieved for her, as I embrace and celebrate the new person to replace the space.

It makes you very aware of every day you are alive.