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.

Day 250 something of complete sh*t

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.

Green Lentil Soup in a slow cooker

Green lentil and vegetable soup (slow cooker)

A thick and creamy soup for swallow practice and leaving some of the vegetables unblended to stretch that trismus out and around the spoon.
A very filling soup with loads of nutrient dense goodness. I adapted it meet some immune system needs by way of turmeric and ginger powder. Yum!

1 cup green lentils

¾ cup split peas ( or you can use more lentils)

1 onion chopped

2 cups chopped potato

2 cups of chopped celery

2 cups of butternut squash

5 cloves of garlic minced

1 litre of stock – chicken or vegetable ( I prefer chicken)

Salt (Himalayan)

1 teaspoon turmeric

1 teaspoon ginger powder

To finish

1 – 2 cups of chopped spinach or kale

Few glugs of quality olive oil

1 cup of chopped parsley

Red wine vinegar, or sherry or lemon juice or I added apple cider vinegar – about a large tablespoon – no science taste and add to suit.

  1. Place all ingredients in the slow cooker , cover and cook on high for 5-6 hours or low for 7-8 hours.
  2. Place 3 – 4 cups of the soup in a blender with a few glugs of olive oil and pulse until semi smooth and creamy looking. Add this back to the pot – if you like more whole vegetables then only pulse 3 cups.  I like to leave a few whole vegetables to practice chewing and opening mouth ( trismus exercise)
  3. Stir in spinach / kale / parsley and then let it sit for a few minutes.
  4. Season to taste and add the sherry, vinegar or lemon juice.
  5. You can add parmesan cheese to serve also and I soaked sourdough bread in it with butter!

Mind your C’s and Q’s

C is for Chia seeds. I am like a kid with a new puppy, I just can’t put it down.

I am fast learning as a head and necker (that is, a head and neck cancer patient) that Chia seeds are worth their weight in gold. Today’s experiment involved not only Chia seeds but Powder Me powders and here’s what happened.

Mixed Berry and Chia Seed Pudding

I can hear the groan from here, but trust me this pudding is something meant for breakfast but I snack on it throughout the day and it could double perfectly as a dessert after dinner. I have dysphagia and with the recent removal of my PEG I have to go it alone now in terms of eating orally.

It is still hard to swallow, so this cold, slippery pudding is just right Goldilocks. Pictured here are white chia seeds ( you will note the addition of the red powder does not turn the pudding red, there are no nasty food colourings in our powders) and I first really took notice of them when I started adding them to my smoothies. They create a thickness and slippery fullness that makes them ideal for swallowing.

Now, before they censor me, this is important because avocados are so expensive. Four avocados will set you back almost $16 dollars in Australia, so I mix up it up using avocado and chia seeds every second day or so. Both make smoothies creamy, thick and delightfully decadent.

Chia seeds are the tiny black seeds from the Salvia hispanica plant, a member of the mint family which comes from Central and South America. Today I used a white variety and the seeds, no matter the colour, pack a nutritious punch. High in fibre, protein and omega 3 fatty acids they contain a lot of the nutrients we head and neckers need after radiotherapy.

We are constantly told to eat calories, eat protein, eat fat. Now for the first few months I did that with icecream. Believe it or not, that’s not sustainable and unless you can afford top shelf icecream constantly – I found the cheaper brands made me cough and aspirate. I also didn’t want to be eating all that sugar. Like I said, not sustainable. But to have this easy reach cold pudding in the fridge that takes minutes to make is great.


Has a mouth feel like frog spawn – I am guessing !

Here’s the recipe

1 cup (250 ml) water mixed with 1-2 tablespoons of protein powder (vanilla or plain) I use 180 Nutrition (Australian and no added nasties – that’s a whole other blog)

¼ cup (35 g / 1.2 oz) whole white chia seeds

2 teaspoons of Powder Me Mixed Berry powder

And or 6 strawberries

2 tablespoons natural yoghurt or coconut milk or coconut yoghurt

1 teaspoon turmeric (optional)

2 teaspoons of coconut sugar (optional)

METHOD

  1. Combine water and chia seeds into a bowl and stir gently for 3 minutes.
  2. Set aside for 20 minutes allowing the seeds to form a soft gel appearance.
  3. Puree the strawberries, turmeric & mixed berry powder until smooth in a blender. If you are not using fresh fruit just turf the powders in the bowl with the water and chia seeds.
  4. Spoon pulp into a bowl.
  5. Add  3 tablespoons, natural yoghurt, coconut milk or coconut yoghurt.
  6. Mix through until combined.
  7. Divide between 2 serving bowls. I put mine in one larger glass bowl with an airtight lid and put it in the fridge.
  8. Garnish each pudding with a sprinkling of mixed berry powder and drizzle with a light drizzle of coconut milk.
  9. I added some cinnamon and frozen fruit for the image.

Q is for Quinoa –

Quinoa is a flowering plant in the amaranth family. It is an herbaceous annual plant grown as a crop primarily for its edible seeds; the seeds are rich in protein, dietary fibre, B vitamins, and dietary minerals in amounts greater than in many grains. Source: Wikipedia It’s great for people looking for gluten free and the rest of us? Well, I am still experimenting with it. I don’t mind eating it if someone else has prepared it into a wonderful dish or a salad made of it with fried haloumi and lemon juice, then I’ll eat it.

I am yet to wax lyrical about it. Give me time, I’ll find something worth while writing about. In the meantime try the pudding. Ten out of ten.

Learning to …

Photo by Tim Mossholder – thank you Tim

For me, a big part of “getting over” my cancer was getting my PEG tube removed. In the end it took 14 months and it fell out of its own accord, in an Ambulance on the way to hospital. I asked that they didn’t try and put it back. I felt within myself it was time to stop using it.


However, before I got to that point I had to research and experiment with smoothies and real food before I could transition back to oral feeding. So here’s the thing, I could not wait to get off the “commercially prepared liquid enteral nutrition formulas” also known as “artificial food”. Yes, that is a mouthful and the more research I did the more I realised I had to get back on to real food before I could start to heal and feel better.

I will preface this next section by saying I am eternally grateful for my surgeon suggesting I have a PEG put in. If I had not done so it is pretty unlikely I would be here writing this today. Secondly to the manufacturers of “commercially prepared liquid enteral nutrition formulas” – thankyou, for without your “artificial food” I also would not be here to write this.

About 3- 4 months into PEG feeding I started to really miss the social aspect of food and eating. I was also missing cups of tea and all those beautiful moments you take for granted with food. I took a long time to heal and with all the ups and downs I started to research a passion of mine and that was food as medicine, which was the whole and sole of my business The Food Manifesto. It took four years to realise my business names’ purpose.

Extract from my forthcoming book : Easy Follow Easy Swallow

Like and Follow me on Facebook to stay up to date with launch dates and other Food Manifesto products.

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.

French Onion Soup with Gruyere & Garlic Croutons

Ingredients

6 large brown onions (peeled, halved and thinly sliced)

4 tablespoons of butter

2 tablespoons of olive oil

1.5 tablespoon of minced garlic ( reserve some for the croutons)

¼ cup of plain flour

½ cup dry white or red wine

2 sprigs of fresh thyme

6 cups of beef stock or broth (use a high quality one or a good beef bouillon powder)

2 whole bay leaves

Salt & pepper to taste

Croutons

Baguette – sliced into sections

Gruyere or Emanthal cheese

Garlic

Butter

Method

Saute the onions in butter and oil for a good 30 – 45 minutes. You need to get good colour in the onions and the brown bits on the bottom of the saucepan are ideal for adding colour and flavor. Don’t skip over this part it goes a long way to making the soup have depth of flavour.

Next add wine and cook until it evaporates and scrape the brown bits off the bottom of the saucepan. Next add the garlic, flour, and fry off for a few minutes until the flour is incorporated. Then add the stock, bay leaves and thyme. Cover partially and let simmer on low for about 45 minutes.

Whilst the soup is simmering slice the baguette to a required number of croutons. Butter the croutons and add some reserved minced garlic and top with Gruyere cheese. You can use Ementhal and or parmesan too but I love the Gruyere. You can add all three if you like.

Grill these under a salamander or grill in your oven. Keep an eye on them they will burn quickly.

When done, remove from oven and allow to cool – these can be stored in an air tight container for use as you reheat the soup.

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.