Friday 18th September 2020

Changes For The Good: Head & Neck Cancer & Me: Eating. 15/2020.

Changes For The Good: Head & Neck Cancer & Me: Eating. 15/2020.

Next week, I have been asked to be a patient-participant in a video being made for Beyond Five on nutrition. As many of you know I have been a Community Ambassador for Beyond Five – the Face of Head and Neck Cancer – since late 2018.

Announcement of My Ambassador Role.

I was enthusiastic to take part in this video initially…then had a small crisis of confidence (for the want of a better expression) and began doubting my relevance. I was, and still am, firmly encouraged by both the CEO of Beyond Five and my husband that I do have that quality! Thank you.

There is a back-story to this and I am going to share it briefly before making my points about the GOOD that has come for me in terms of changes from a diagnosis of Head and Neck Cancer.

Denyse and eating…before Head and Neck Cancer. 

From early days in my teens and twenties I would self-soothe with lollies, chocolate and whilst I did not over-eat significantly, I did establish a pattern of eating for comfort. None of this was ever really a secret (certainly I did not have any kind of eating disorder, for which I am grateful) but it still was something I would not admit to doing (except me) and then over time, it probably began the life-time (decades rather than all of my life!) of eating for reasons other than hunger or to nourish myself. The bigger picture (pun intended) was first written about here and then, as I became more accountable for my past behaviours around eating, I updated here. Blogging is so good for this!

The above posts show that I acknowledged my eating and what it was doing to my appearance, general well-being and health. Yet, the ‘same amount of weight’ that would come off over a few decades (3 times at least) would also go back on.

What was I missing?

  1. Probably other ways in which to see food.
  2. Or maybe the maturity (even though I was mature in years) to see through the hard yards.
  3. But maybe none of this.
  4. I think as a serial dieter/eater/non exerciser and one who ate emotionally I just did what I did.

A Breakthrough of Sorts: Not Great Though.

From 2013 onwards, I acknowledge how serious my weight had become as a result of eating and less movement when my GP challenged me to try to reduced weight or she would be sending me for a Glucose Tolerance Test as I was becoming pre-Diabetic 2 in my test results. I managed to do as asked and my weight reduced enough to see progress. Yay.

Then from 2014, my anxiety ramped up (we were about to sell our house to pay out the mortgage as I needed to stop work at almost 65), and Irritable Bowel Syndrome re-entered my life after a few decades absence. From then I found I literally could not eat as I did before without the effects of mostly explosive diarrhoea. Yes. Unpleasant and socially restrictive.

Over the time of our move to the Central Coast, and some of my emotionally challenging times to adapt to life’s transitions, this continued to be a pattern and without ‘any real effort’ my weight slowly reduced.

I did, however, raise with my doctors, that I might have had cancer. I did look pretty gaunt. No, they said. OK. I did feel anxious almost all the time.

My Diagnosis of a Rare Oral Cancer: 17 May 2017, and How That Changed Me.

My story is told here on this page: Head and Neck Cancer.

This is a little reminder for me of what I went through back then. I was told on 18 May 2017 that where my cancer was located (upper gums and under top lip) I would require a compete removal of the top half of my mouth. THAT took a while for me to get over, in terms of the shock. Then I went home with my husband and thoughts raced in my mind. One was, if this is making me stressed, then how can I self-soothe or calm if my well-ingrained practices had been to eat something sweet, salty, crunchy or whatever. It was a rhetorical question. I had 7 weeks to wait for surgery and I was so anxious, eating was not high on my list.

Early Days And Getting Hangry! 

Following my 11 hour surgery, 3 days in ICU I was transferred to a room at Chris O’Brien Lifehouse and added to the regime of drips was, via my naso-gastric tube,  some nutrition. The liquid kind. It was, for me, yucky but in one way that was my aversion to milk-type drinks. However, as each feed slowly dripped into my very, very empty stomach I had to change my attitude towards this feed. I started by telling myself “it is healing me and nourishing me” as I get well. I know I was going well as each time my professional team dropped by, they told me so. BUT…even when I finally got to try to oh so good nectar of WATER orally, I began to feel hangry (cranky when hungry!). By Day 8 I was allowed some clear fluids. Hallelujah. Broth, jelly, and then over time until my day of departure: Day 10 a few more soft food choices. No teeth, except for 8 bottom ones AND a very stitch-filled mouth!

And then I Came Home. Lots of Eating Ahead? Maybe.

Before I left hospital I was visited by the dietitian who was incredibly helpful with guidelines for me, and offers of samples of food-in-a-bottle and that she would follow up my progress at home via phone calls. I remember her words “now, you need to put on weight”. WHAT? No-one ever had told me that. It was a complete revolution in terms of instruction. I now know that yes, head and neck cancer patients need to keep weight on but no-one has ever really revealed why. Note to self: ask at next visit to my team.

My return to eating caused a great deal of distress in me because diarrhoea came back with fury as my emptied stomach  rebelled with a strong anti-biotic inside. I did not, as I thought I had to do, follow the dietitian’s advice but that of my local GP who had already seen me through diagnosis and now post-operatively. His words were “eat what you are up to and can keep you going.” Drink water as much as you can. With that, I did share the news with the dietitian when she called and I appreciated her services on offer but has to do this ‘my way.’

What I Did Then. 

My mouth did restrict my intake of food but I learned to adapt and seek foods that were both nourishing and pleasurable in texture/ taste. Mind you, my reconstructed mouth was quite a barrier to a variety of tastes but it was important for me psychologically to eat normal food. But also the words from the dietitian echoed and to “add value to food”. This meant a tiny lemon cupcake would have some dairy added to it: yoghurt, custard, ice cream. I became well-versed in the inner conversations re “fun to eat but also eat to heal”.

None of this food preparation or meal decisions came really easily and it required patience on my behalf as I was normally the meal-maker and my right leg’s giving up of its fibula, skin and flesh for my mouth, meant I could not stand for long…nor did I have much energy. But, my patient husband (and then full-time carer including grocery shopper) would help me as he could. I might not have been able to bite into some vegemite toast but I could savour the flavour and add some slices of avocado for nourishment. There are posts here, and  here about eating in those days.

Before I became affected by the anti-biotic, this was what I ‘could’ eat. Soft, slippery and full fat foods.

And Over Time, I Made Changes as My Mouth Healed. 

From July 2017 until August 2018 I had only 8 teeth in my mouth. It is amazing however, that humans can adapt! Mind you, I also add, THIS human had to become creative in her eating as boredom set in quickly and a sense of resentment about what head and neck cancer brought to my now lifestyle. I did make the effort to feel more grateful and appreciative of all that had been done for me. There were 3 more surgeries too, inside my mouth, to prepare it for an upper prosthesis of teeth.

Creativity included:

  • value adding to sweet foods like small cakes which were easy to swallow AND made me feel less deprived
  • making up some small plates of foods that would have me feeling like I was not missing out
  • inventing dishes for me: crustless pies, taco-less tacos
  • finding more and more ways with mince. Thank you to my A/Prof who advised mince would be a good food and my iron levels did slightly improve
  • allowing foods like small pieces of milk chocolate to melt on my tongue
  • iceblocks and paddlepops eaten with a spoon – my mouth did and still does love cold

Weight Was Good  Healthy…. Then I Got Teeth!

Notice my crossing out of good.

This is a judgement I have made like many over many years about eating. I now see, and have learned to see that my weight can be HEALTHY even if the numbers have increased. I was incredibly excited to get the upper prosthesis attached permanently to the abutments in my jaw. I remember fantasising about crunching food, chewing food and more. Well….that is what it was… a fantasy.

A reconstructed mouth is a blessing alright in terms of appearance and function for sure. But it does not do all that my mouth could do, so again, I have needed to adapt.

Adaptation took some tearful routes where my disappointment in not being able to eat something was palpable. I know I tried various foods including crunchy chips and they were/are a huge disappointment as they sting inside my newly re-skinned mouth and I could not swallow them. Onward to crunching into a piece of apple. Actually no. But I can eat small pieces or even better if I grate it.

I could add many more adaptations and they will form a new post in the future.

What I want to write about now is my weight, self-images and stories that can be untrue.

Changes in Me For the Good. Health and Head and Neck Cancer.

From August 2018 until February 2019 my weight from the rather steady figure of around 69kg increased by around 5 kg. I could feel it but I also LOVED feeling well and having more food choices. I was somewhat disappointed for a bit that some of my clothes were more snug…then I said to myself “that was because you could not eat much nor as well as you can now”. It was to be an on-going inner conversation (of self-judgement) for a while.

When I realised what I looked like (one aspect of me) was HEALTHY I began to accept that this was a good thing.

  • In fact, I knew it was. I did however let the old weight-centred thoughts creep back.
  • I started to believe I might get back to the much more heavy person I had been in 2013-14.
  • I was scared but the clothes and the scales did not lie. I stayed around the same.
  • For many months, and now it’s a year. It has not happened.
  • In fact, I am a little less on the scales than a year ago.
  • I use my clothes now as a measure of how I am going.
  • Very steadily and the scales are used rarely but they are telling me what I feel it true. So, no more stories!

My Appearance on the Beyond Five Video on Nutrition.

I now look forward to helping present the patient’s perspective on what I have learned personally about nutrition and how to nourish my soul as well as my stomach and mouth. I can honestly say I eat for both pleasure and health yet in a different way from any other time in my life.

This is why I am grateful for my diagnosis of head and neck cancer.

I have learned to sooth myself through meditation, talking with my husband, using my journal, art and going out for coffee. This is one important strategy in my every day self care. In fact, the more I self care, the less I even think of a need to soothe with food. How grateful I am for that.

Each time I go out, or plan a meal or snack at home I often have to re-think from the old familiar paths of pre- head and neck cancer.

  • Quantities are very different. That’s fine.
  • I make mall dishes I can freeze.
  • I carry small packs of biscuits in my bag to have with a coffee.
  • I know too that I can manage certain soft sweet foods with my coffee and will often ask for a bag to take half home.
  • I have still not ventured out for a ‘real meal’ but neither of us are that interested.
  • We had had lunch with family and entertained here.
  • I am less self-conscious of my eating these days.
  • I do always have a small bottle of water nearby.

 

I Am Going Well! 

This is my stock standard answer when I am asked how I am. It’s true. I am indeed. I am glad to have seen the good that head and neck cancer has been for me and my eating. This is me on Thursday 20 February enjoying being back near the water after attending the Central Coast Head and Neck Cancer Group Meeting..and catching a treat of a small iced cupcake with a coffee on the way home.

There will be some updates after the making of this video but already, just writing out what was making me feel less than my normal confident has done me good.

Onward!

Denyse.

 

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Comments

  1. That “self-soothing” eating pattern is one I recognise in myself. I was hunting around the apartment for something to eat before, not because I was hungry, but just because I wanted “something”. Not a great habit to have 🙁

    I’m so glad that your husband and the Beyond Five CEO have convinced you that you should be in this video!

    • Thank you my friend.

      Glad you understood my habits…and yes, we are often looking for something that food can’t fix.

      This was made so clear for me in the book called The Craving Mind by Judson Brewer. I first heard him speak on my Calm App and then went hunting. Listened via audible then bought the book. The cravings I have learned (more than ever) are just ‘feelings’ and I can decide whether to act upon them or wait till they pass. It’s made a huge difference in my self-soothing if you like because ain’t no amount of eating can fix things.

      Denyse x

      PS actually excited to be part of the message for Beyond Five now. Outfit chosen…all good to go.

  2. The boredom in food choices would be a great challenge for me. I think you’ve done so well to cope with the changes – not only the surgery type stuff but the longer term changes.

    • Thanks Vanessa.

      Honestly, yes, it is boring when you are restricted as you know. I found the 14 months of no teeth on top quite hard to navigate with imagination of “what will I eat/prepare now”.

      Since I have the teeth up top I do not enjoy some of those foods I had to rely on such as spag bol.

      I also felt a wee bit mislead by some ‘funny’ remarks about crunching into an apple before I could go home when I got my teeth in 2018. I had no idea that would not be happening AND I would have to learn to eat again and adapt. Some people’s idea of humour. Not my prosthodontist but another one.

      Thanks for your support – you have always been there for me through this.

      Denyse.

  3. I tingle when I read your stories Denyse! What you’ve been through, what you’ve overcome and how you continue to share and inspire others- it’s fantastic! Thanks so much for sharing your story with us xx

    • Oh that is so lovely. I do hope the sharing helps. I know after I wrote then published this one in particular I felt the ‘load’ of false beliefs lift.

      Thanks so much Deb for your on-going care and support.

      Denyse.

  4. I think it’s pretty impressive how you’ve had to adapt and manage with so many changes that cancer brought into your life. I’m stoked about the video and love that you continue to share your story with us.

    • Thank you so much.

      Yes it’s a funny thing to think that this cancer has brought changes for good.

      A long but productive afternoon at Lifehouse yesterday. I did my vid in ONE take. Got a high five too.

      Back at Lifehouse next Tues for a cancer check and the CEO of Lifehouse invited me to have a coffee beforehand. I got to meet her yesterday in the foyer as we, amongst many, were singing along with the choir !! It IS a very different hospital to any other..for which I am grateful.

      Denyse.