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.

How to read a recipe.

Read it through from start to finish.

Read it though from start to finish …no, that’s not a typo, I can always remember at college being given a test of some sort that said: Please read through the entire assignment before starting. Only to find that if you didn’t, you would have missed the bit that said, answer only questions 1 and 2, of a 12 question assignment.

Remember, a sharp knife makes preparation a great deal easier.

Ingredients – have you got all of them? make sure you locate each ingredient in your kitchen pantry and ensure that the cardamon is just that and not ground chilli. Is that spring form cake tin 8 inches or 12 inches?

Are there sub recipes where things are expected to be already made…as in the case of rubs for meat/chicken and or sauces such as bechamel and or tomato for pasta dishes like Mousaka and lasagna.

Common cooking terms – brush up on your knowledge. Saute, fold, cream, beat etc. They all have a very distinct purpose and will ultimately affect the outcome of the product you are cooking. So make sure you know what each means and how it is done. Cut, slice, dice, chop and some of the culinary terms too like Mirepoix for example or Boquet Garni which will open up a whole new world of cooking for you.

It is so important to read the recipe thoroughly, I cannot emphasise this enough and it’s also important to have the ‘tools of trade ‘ at hand. Measuring cups or spoons, a small set of scales and large mixing bowls. Measuring jugs, juicers, cake tins, muffin pans, the list can be as long or as short as you like. I made do with old wine bottles as a rolling pin for many years. Over the years you add to the utensils and gadgets to make cooking easier. Always have on hand, baking paper, bakers powder, herbs and spices … which means storage containers.

Never underestimate the value of completely reading and understanding a recipe. It’s imperative you understand what’s being asked of you to be successful in the kitchen. Much like a good shopping list it is your “plan” for your intention. The old rule of NEVER shop without a list and never shop whilst you are hungry. Yes …don’t do that.

Watercress and lemongrass soup with poached egg requires mise en place.

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.

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.

Baby it’s cold outside…

Step into Life / Kensington Gardens – for more information: Here

Mid winter and we start to notice that our waistlines have thickened the days are shorter and the morning’s are dark. We have spent the majority of winter in heated offices, cars, supermarkets and eaten heavier foods and possibly consumed more red wine than we would in the warmer months. Who in their right mind goes out to exercise in this weather?

Well as it happens quite a few people, and if you are like me and you start to wonder how can I fit it all in, then you need to set the alarm at 5.15am to make that 6am class on the oval or have your workout gear with you and make the 6pm class after work. For the past few years I have worked from home. Working from home appeals to me on a number of levels but the number one reason I have for being a fan of the “work from home” office is that it allows you to fit in your hour exercise for the day relatively easily.

I’ve always been an early riser and I love exercising in the morning. After work is too hard for me. By about 4.30pm I am done, my brain doesn’t fire and I do my best work very early in the morning. I am also hungry and ready for dinner at 6pm so that rules out after work workouts for me.

Here are some tips to help you make that early start.

1. Always have your exercise gear ready to go. I have a special drawer which contains only my workout clothes summer and winter. Beanies, gloves, cycling gear, rainproof jackets. Keep it washed and clean. Straight back to that drawer – no messing around trying to find an outfit at 5am.

2. Have the right clothing to suit the season and the activity. I have lots of layers, lightweight and quick drying. The secret to cold mornings is layers and what is this aversion Australians have for wearing hats ! Wearing a warm beanie in the morning solves most of the “cold” problems. Invest in one and some warm gloves whilst you are at it.

3. Correct shoes for exercising. Running shoes for running and all rounder shoes for everything else.

4. I also have a “gym bag” that has my shower proof jacket, a set of outdoor gloves and a beanie. My water bottle is always full ready to go in the fridge.

Exercising outdoors has its health benefits, exercise and sunlight together can get your blood flowing, providing organs with much needed nutrients to give us energy, stave off the blues and trim the waistline. Working out outside can also increase your metabolism. Watching the sunrise is pretty awesome too.

Research has shown that regular exercise strengthens your immune system so it can fight off bacterial and viral infections. This is important particularly in winter when you are exposed to cold and flu bugs. It’s also important to maintain an exercise programme to ensure constant care and boosting to your immune system. Sharing breakfast or a coffee post workout is always a nice thing to do too.

Some days my group outdoor exercise group is the only time I leave the house in winter. I have been training with Step into Life (SIL) at Kensington Gardens now for 8 years. SIL provide all the encouragement I need to get out there and actually do some focused training. I was very unfit when I started and I remember that every muscle in my body hurt and it was good to have trainers there to not only monitor me but also encourage you to try different activities. After 8 years I have made some amazing friends and the group fitness focus means you have and get encouragment from the group as well as the trainers. So if you live in my area, contact Annki here to come and have a try.

Lemon Delicious Pudding

Courtesy of Gourmet Traveller and Bethany Finn’s mum.

60 gm unsalted butter, softened

330gm (1 1/2 cups ) caster sugar

Finely grated rind of one lemon , plus 150 ml juice (from about 3-4 lemons)

3 eggs, separated

60 gm self raising flour

375 ml milk (1 1/2 cups) milk

Pure icing sugar an pouring cream to serve ( i also add Golden North Ice Cream)

METHOD

Preheat oven to 170oC. Beat butter ,sugar, and lemon rind in an electric mixer until pale(2-3 minutes). Add yolks one at a time.beating well to combine between each addition, add flour, then gradually add milk, mixing until a smooth batter forms. Scrape down sides of bowl and stir in lemon juice. Transfer batter to a bowl and clean dry mixer bowl thoroughly.

Whisk eggwhites in an electric mixer until firm peaks for, then gradually add to batter, gently folding in until well combined. Pour into a 1.5-litre ceramic or glass dish, place in a deep baking tray, transfer to oven, then fill tray with enough boiling water to come halfway up sides of dish.

Bake until risen and golden brown on top(40-50 mins) Cool briefly (5minutes) then dust with icing sugar and serve with cream or ice cream.