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.

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.

Chicken Thighs and Kitchen Knives – organising your kitchen pantry

When you want to eat and prepare healthy and nutritionally balanced foods you have to be set up to do it. Much like if you want to build a boat in your shed or a go-kart you need the right equipment to do the job. You need a plan and I am here to help you devise your plan.

The title for this blog came from a hilarious conversation I was having with my mum, and I have dragged this title around with me knowing it would find its home eventually.

Like any workspace it needs to be neat and tidy with your tools of trade placed in an easy to access location. When you are cooking you need to be organised. Even before mis en place your knives on a magnetic strip (I dislike knife blocks because they tend to take up valuable bench space) but most importantly and the reason for this blog is your pantry. A super organised pantry is the Holy Grail of successful cooking.

Step 1 Take everything out of your pantry or if you are blessed to have a walk in pantry do it in sections. We need to categorise food sections within the pantry.

Step 2 Throw out any thing past its used by date – seems obvious but I have found Keens Mustard going back to the mid 1990’s and it does lose its taste after a while. So throw it out. Get a big garbage bag and throw everything in that is past its useable date, also with this are any biscuits (sweet) and chocolate and sugary drinks (Yes that includes Milo) and soft drink, cordials, cakes and cake mixes.

Step 3 Once you have done all the throwing out, donate it to a charity or empty the contents and recycle. Whatever you do, you don’t eat that stuff anymore so get it out of your kitchen.

Step 4 Wipe all the surfaces down in your pantry with bicarb-soda and vinegar and then sort through everything you have left. Here is where you will need some (preferably glass) containers with air tight lids. I like to use consistent storage containers particularly if you have a small pantry it helps with space and creates a tidy view of your food products. I tend to use glass containers they don’t hold smell and are easy to clean.

Step 5 You can purchase containers, labels some very useful blackboard stickers and chalk to write your labels in The Food Manifesto shop I suggest you purchase these things before you start. If you have a lot of herbs and spices put them in containers that are airtight. The selection I have in my shop, I personally use and can highly recommend, I even have the labels and white chalk to write your own labels up.

Great storage ideas and the stainless steel magnetic herb containers tick every box...
These herb and spice containers are great – we sell labels for them too.

I always start with large oil cans at the bottom of the pantry, I buy the 4 litre tins of olive oil and fill a smaller glass bottle for use every day. The oils, cat/dog biscuits (also in big plastic tubs for easy handling and to keep mice out) I purchase in bulk where I can if its a good brand. Larger purchased items take up the floor or lower shelves of the pantry.

Next level is the flours, beans, nuts, pasta and every day items I use.

Dry Goods stay together including rice ( I have a variety including brown, long grain and aborio) Although I tend to eat brown rice more than the others. Next level up is tea, coffee herbs & spices stored in airtight tins. The remainder I keep on the side of my fridge in metal magnetic containers . Again these can be purchased from the shop online.

If you are like most people you end up with open bags of the same food product, so try to minimalise open packets that encourage moths or weevils. Rolled oats is a great one for attracting weevil, so airtight is the way to go.

My baking products all go together, baking powder, icing sugar, caster sugar, vanilla essence and custard powders. I also group my Asian food products in a very large click lock and air tight container. This normally includes: Dried fish, Kelp, chilli (dried) Miso items with a strong pungent smell, so it does not end up tainting other products.

So that is a very quick guide to starting to get your pantry sorted. Once you have your basics sorted and easily at hand, it makes cooking and recipe protocol that much simpler. You will have a productive day and a proud moment when it’s done. You can thank me later.

You can shop here: The Food Manifesto look in the collections section for other items grouped together that you might like.

Do I have to eat ? When the dreaded stomach peg becomes the easier option, and you realise you are never eating pizza again.

Before I left Australia I had been suffering a constant sore throat, I put it down to stress and the fact that I was upheaving my life to go and do something else. I had assured myself that it would disappear and after five days on Phu Quoc island I realised I wasn’t getting better.

A heavy chest cold had settled in too and my ears hurt, I was swallowing razor blades and well, I felt like hell. My other blogs posts explain fully as to exactly where I was health wise https://thefoodmanifestoblog.wordpress.com/2019/03/05/nil-by-mouth-and-by-that-i-wasnt-expecting-6-months/

So fast forward 9 months and I am back home in Australia and trying to make myself eat and not rely on the stomach peg that was inserted back in December 2018. The life giving food peg and administer of all things water, medicine and food. Using the peg is relatively easy but you have to learn how to fill syringes, get them on to the end of the peg, keep them kinked, don’t push too fast or it all comes out every other orifice. Wash the syringes, have towels and wipes for mess and know that it will get all over your clothes if you are not careful.

The peg dangles (literally) from your stomach and gets in the way of everything. I tuck mine into my undies and apparently when they inserted mine they made it very short compared to others. My biggest issue was breaking the ‘seal’ that plugged the feed tube. I have had to go to Gastroenterology Department two times to get them to replace it. Apparently they had never seen this happen before, and suggested I was being too rough with it. Given I can’t turn the peg every day as I should, much like an ear ring … I doubt I am too rough on it. I threatened to go to Bunnings and get my own if they didn’t fix it. They fixed the problem by cutting the seal of a new peg and giving it to me. I am now month five with my peg. The last week or so it has become the only way I can take it anything either water, food or meds. I am also about to go into week 12 post treatment, 3 months since the chemotherapy, radiotherapy finished and 6 months since my surgery.

The past couple of weeks I have noted rapid changes in my skin texture, jaw numbness and the width to which I can (or cannot) open my mouth, also known as Trismus. The pain if I consume anything is excruciating. I have spent days in tears and I can honestly say I have never known pain like it. This is the after affects of radiotherapy. It’s not swallowing that hurts but the sensitivity my gums experience when anything other than ice cold milk is in contact with them. I am not eating anything now, I do try, but it ends with me doubled over in pain and in tears. It’s so debilitating and the small amount of social contact I had with the outside world is now nil. I can’t manage coffee or smoothies out side of my own home.

You should be able to get three fingers in between your teeth … I am a long way from home!

So I sit here on a rather dreary Sunday wondering whether this is ever going to get better, the solitude I am some times grateful for, but mostly I spend my time trying to heal, all my energy and focus is on me and getting better. It would appear that there is no end to this awful disease.

Hell of a way to lose those pesky last 5 kilos! Since we started the treatment I have lost 10 kilos.

With this being my third month post treatment I also get to have another PET scan ($$) and it’s my first to see whether they “got it” … there are no guarantees with the scanning, you could still have cancer and it’s not picked up. So I decided that they have got it all and that I am cancer free. What else can you do ? Next week too I am going to give cold laser a go to assist with the dewlap forming under my chin as a result of having 30 lymph nodes cut out. Accupuncture seems to alleviate some serious saliva issues through stimulating my saliva glands, and thrice daily face and neck stretches. Early days they keep telling me, early days.

May I have some more serviettes please? Week # 4 post treatment.

Today marks my mum’s 89th birthday and I am eternally grateful that she has been here for this most horrendous journey of mine with Head and Neck Cancer. This week marks week four post treatment. Although I have received conflicting information regarding what to expect, mostly it’s been accurate but to be fair, recuperation is different for everybody. The first two weeks after the radio and chemo therapy finished were appalling. They did not sugar coat it, and you just have to get through it best you can. Hold your breath and run straight towards it, keep going until you have to surface for air again.

I stayed with mum for those two weeks. Ideal because we both sat in very comfortable leather armchairs watching Edie McGuire followed by Channel Nine News. Leg rugs and soft food (or in my case no food) and lights out by 8pm. I suddenly realised how much closer to a nursing home I was getting. Still, it allowed me to spend time with mum and I was happy to sleep during the day and most of the night except for regular spitting into an old honey bucket every five minutes, I slept well with the help of some opioid.

For those to go through this it’s hard to explain how you are going to feel, I had this clawing tightness in my throat, gagging sensations that resulted in vomiting (a little not bucket loads) and the tricky part is to look after your teeth. Mouth sores and ulcers (I was lucky and did not suffer too badly) I kept up regular swilling of bicarb soda. I kept flossing and did what the specialist dentist told me to do religiously. My dentist Sharon gave me a scraper – best utensil ever.

Soft tooth brush, scraper and Christmas Tree flossing

Food wise I have dabbled with soup, smoothies ( which I couldn’t stand before this disease let alone now!) pulverised vegetables and pasta. Sounds appetising huh? then you eventually have no taste, or rather for me nothing tasted as it should. I had an iced coffee with ice-cream in it – I could tell it was cold but it could have been plaster for all I knew and could taste. I appeared to have lost the ability to taste ‘sweet’ and I don’t trust myself to cook because what I can taste and what it actually tastes like are two very different things. I have read that venturing out to public eating places can be challenging. No one these days makes good soup – well they do, but they are few and far between. I think I want something to eat, I can feel my appetite then ‘poof’ nothing. So mostly I dine at the home based buffet which is below.

Home based buffet where you can go back as many times as you like!

Week # 5 and now my saliva glands and taste buds are taking a hit. My surgery scar is healing nicely and my spit bucket has decreased in size. I also decided to go back to my exercise group for company and fresh air as much as any kind of disciplinary exercise. I have lost 8/9 kgs since I came back to Australia. In that sense I feel good but it’s a hell of a way to lose those pesky last 5 kilos. I hope to take up running and kick boxing again in the not too distant future, in the meantime I am taking it day by day. One day is good, the next it’s all I can do to get out of bed.

Step into Life Kensington Gardens – My fellow SIL comrades helped me through treatment and for that I am eternally grateful.

So we now head for week #6 with my eye on week #8 to see how much progress we have made. Something is new and different every day and I ventured out to have a fresh juice with a friend a week back and well, let’s just say that was not that successful. Although I discovered that I could swallow more than previously I had to have 3 big glasses to ensure I could add enough ice to my fruit juice to get it down ( the colder the better), watermelon plays havoc with your tongue and tastebuds, and I pretty much depleted their stash of serviettes for wiping, mopping up and generally making me look as though I had a two year old with me. Suffice to say that the G&T I tried at my local tasted like kerosene and is something I wont be trying again in a hurry. Ce La Vie.