I am ready to break up, we will just do a biopsy to make sure.

I had my fingers stuck in my ears, la la la laaaaa, no I don’t want to hear what you do in a biopsy to ascertain whether or not you got all the cancer in my throat and tonsils. You have prefaced this description by saying it is barbaric. Enough said.

May 2019 and I was 3 months post all my treatment. My bloods had held out for chemotherapy, I handled the “mask” ok during radiotherapy, in fact I use to fall asleep at times. I religiously slathered cream on my fried skin. By May 2nd all eating had stopped. I couldn’t manage anything. Nerve endings were raw, mucous wasn’t moving up or down, dewlap was tight and puffy and I was feeling really, really sick and flat. The pain at ground zero was excrutiating. I couldn’t swallow my own saliva. A dental visit discovered a pocket and what appeared to be exposed bone on my lower jaw. A PET scan was scheduled and I limped through on a cocktail of pain relief.

It turned out that the radiation was so intense it had torn away the flesh from my jaw bone. I was in the hurt locker – this was a time where I was meant to be improving.

To say it hurt was a massive understatement. The PET scan was clear and the CT scan revealed some inflammation. I had had, surgery, radiation and chemotherapy on a relatively very small space and inflammation was the least of my problems. During this time I was also undertaking cold laser treatment on my lymphodema. It was helping the healing of my scar tissue internally. Mid June and I was still in a very bad way, icecream hurt if that’s possible. I was using my PEG constantly for nutrition and nothing orally at all. No soup, smoothies or icecream. At this point, my medical team (oncologist) introduced Methadone. Slowly at first, increasing dosage to see how I would react.

Well, it turns out, me and opioids who would have guessed. So I am now on methadone, amitriptyline, gabapentin, paracetamol and all through the PEG. Still I was in pain and I had to keep on top of it.

PEG replacement in Emergency at the RAH

In the middle of all of this I had to have a breast screen. I questioned whether or not with all the MRI’s and CT’s being undertaken was it necessary? Yes, it was and that came back clear. So I struggled through until July 2019, where the methadone basically made my life liveable. I slept really deeply, my coughing got a lot worst before it got better. I started to “eat” tiny amounts. Mainly cream and iceceam. My dentist didn’t want to give me Trental (a drug that increases blood flow to wound site) in case I had residual or more cancer.

We did not know what we were dealing with so I had to wait until we had results back from yet another PET scan. Whilst I was waiting for my results my stomach PEG fell out of my stomach. It was early morning and I had felt faint and sick, not taking alot of notice because that was normal to feel that way. I was making the bed when I felt what was my cat’s tail between my legs. It wasn’t Rockets tail but the PEG and the end of the disintegrated balloon. So in I went via ambulance to Emergency to get my PEG put back in. You have a fifteen minute window until the track starts to heal over. We didn’t make it, so I was admitted over night and had the whole rig replaced again. There is a whole other story about this process involving syringes and feeds. To say it wasn’t straight forward is putting it mildly, suffice to say I was becoming an expert on PEGS.

I am a visual person so this helped me understand what was happening when I was trying to swallow. I marked where food and drink should go and where it shouldn’t.

Fast forward a couple of weeks and I received the results of the second PET scan – the journey at this point had been 10 very long months and I was going in for a biopsy to make 100% sure we were not dealing with anymore cancer. It was about this time I decided to take matters into my own hands and start seeing a Naturopath. Detail of which may be read here along with the results of the PET scan.

We are now in October of 2019. My healing is taking so long and I can’t swallow the Trental meds well and the side affects are making me feel sick. My oncologist visit resulted in me asking if I could be considered for Hyperbaric treatment. This treatment turned out to be the best thing for me. Six days a week for 6 weeks or 33 sessions in a hyperbaric chamber.

Hyperbaric essentially meant I was healing at a faster rate than under normal conditions. The oxygen levels are many times greater and it’s done in a diving chamber. I could feel the difference in a couple of days. It turned out to be my saviour. I finished Hypobaric mid November of 2019, in the end completing 29 sessions. I then had to have a colonoscopy as a test had showed some positive results. Yes doesn’t rain it pours. This day surgery just about tipped me over the edge. I was so sick of hospitals and not eating. Fasting and prepping for this was pretty easy. You can work that out yourself.

I rang the Royal Adelaide Hospital and asked for a swallow test. I wanted to know why I couldn’t swallow, was there something more going on. They booked me in and it is a straight forward process where you stand in front of an Xray whilst attempting to swallow different textures. Apart from the loss of 1/3rd of my tongue, there appeared to be no real swallow issues. The dark blobs below represent fluid and food and where they stick. Gravity was doing most of the work.

Still, I am not eating well and I am getting really sick of “eating” artificial food or more commonly known as “commercially prepared liquid enteral nutrition formulas”. I managed to eat a very small amount over Christmas and knew that something had to change, my second Christmas was slightly better than the one before, but I wanted this PEG gone permanently and was told 6 months at least. Another 6 months was really bad news. I had been in a relationship with this PEG for 12 months, it was time to break up.

Published by The Food Manifesto

I am a life explorer, food forager, choice crusader, eco educator, leader, teacher and head and neck cancer survivor. I've loved food all my life, my mum taught me good eating habits and how to cook nutritious food with loads of flavour. As a little girl I lived next door to a wonderful cook Pat Heidrich, I watched as she rolled pastry, filled cupcakes and prepared light as a feather sponges. My love of licking bowls and beaters started early. I grew up and explored my passion by studying cooking, trawling food markets, buying good equipment and experimenting with the tastes and cuisines I love. This blog is intended to share my passion, inspire you to try ...and fail, provide tips and every day good advice about cooking, shopping for ingredients, and planning menus for you, your family and friends. What's your food manifesto? talk to me about how I can help you.

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