Sunday 22nd May 2022

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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On Learning About Eating. Part One.10/2019.

On Learning About Eating.  Part One. 10/2019.

I have been eating my way through life for over 69 years now. As anyone does.

Yes, I “am” the baby. I also know my grandmother (left) and Dad struggled with weight issues too.

But, I still do not understand much about eating ….unless it is:

  • diet-based (fail)
  • managing to eat enough for nourishment after cancer surgery in my mouth (pass/fail/maybe)
  • how to moderate my choices for more than a day or so ( pass or is it fail?)

Why I am I writing about this topic?

It has puzzled me (and I am thinking many who read this) why I ate. Because I know it was often not based on sound nutritional practices and in fact was in some way disordered. I do not have an eating disorder but I do/did eat like this:

  • some secretive ways – late at night or when no-one was around
  • using stashes of chocolate to soothe me
  • having take-away food in the car

I have written a long post here about my “weight” and how I played “possum” about it. No-one could (or dared) mention it yet I was/still can be ashamed of my behaviour.

Since my cancer surgeries where I lost more weight through not being ABLE to eat much, I did enjoy the unexpected outcome of buying lovely clothes to fit me and to show my newly acquired physique…thanks to oral cancer…

And that was lovely and I will always appreciate that time in my life from October 2017 to around the same time in 2018.

Some examples of my pre-upper prosthesis meals. Mind you I cannot face any of these as a meal now I am post-teeth.

Then I began to eat more food from late August 2018 on. Because I could. Oh and it tasted so good, the senses were in over-drive and the fact that I could now BITE, CRUNCH and CHEW was amazing. This happened because “I got my upper prosthesis”. Yay.

And my weight has crept up. What did I do? I was glad I could eat from a wider (pardon the pun) range of foods but I sensed my retreat into anxiety about my appearance and that it would become noticeable to others. Early in 2019 my husband could see my emotional state had become less content since my early months of “having teeth” euphoria and we had a very frank discussion where I confessed I was worried I had not learned anything new about eating despite the privations of 14 months with no upper teeth. Because of cancer. If you want to read about my cancer, here is the page with the posts.

Organised and planner me took over for a while and this is what I came up with since that chat:

  • weigh-in once a month
  • focus when I go out on coffee part not the add-on of a food such as donuts, date loaf or muffin
  • eat more regularly: make specific time ranges for three meals a day. Add snacks.
  • plan groceries around my meals (my husband and I eat a shared meal a few times only in a week)
  • resist late-night snacking in bed by allowing hunger to be felt
  • speaking kindly towards myself in any times of difficulty (this is such a different me to old, punitive me)
  • look at the facts about my appearance rather than the perceptions aka mind-based ones
  • move more each day – it has been very hot so it has been better to stay home than to get outside BUT I can walk more when I go to a coffee place in a shopping centre

Then I heard about Mindful Eating. As someone who has practised mindfulness as part of my cancer recovery time along with when I am faced with anxious and scary times, I was very interested. So I bought the two books AND am now listening via CD to this program.

I KNEW I ate for more reasons than stomach hunger! The author who knows from experience of both an early eating issue, is a doctor and a mindfulness practitioner has opened my mind! I am doing some of the exercises and I now know I (we) eat to satisfy:

  • eye hunger
  • nose hunger
  • stomach hunger
  • mouth hunger
  • heart hunger
  • mind hunger
  • cellular hunger

The tracks on the CD are listed here. I am a work-in-progress of course.

Here’s what I am learning so far:

  • I eat visually: eyes it seems come first BUT
  • I also eat by the stomach so I recognise the feelings of fullness
  • I KNEW I ate from mouth hunger but had no idea why. It explains how much I (we) miss chewing, crunching, savouring and tasting….as I did in my 14 months after cancer surgeries.
  • I need to care for and about myself around this issue of eating. Not say anything negative about what I am doing. The inner critic needs to be back in her place. Doing well so far.
  • I need to eat at regular intervals but to also feel the stomach hunger too. I am very much into the early stages of making things around eating work for me but am proud now that I:
  • meal plan – and include some protein at each main meal
  • snacks are well & truly covered and are linked to helping my meet my mouth hunger, visual hunger and heart hunger
  • can look at my image in the mirror or photo and be proud of the body that has helped me overcome cancer 
  • am learning lessons about eating I wish I had known a long time ago

29 Jan 19 : Writing this post after going out for coffee and groceries.

Part Two will be an update. This is most definitely a project in health and head and neck cancer recovery worth taking my time over.

Is eating something you struggle with?

How do you make eating choices?

I would love to know more in the comments!

Denyse.

Joining with Sue here and Leanne for the Wednesday link up MidLife Share The Love.

 

 

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November Notes #5. 2018.125.

November Notes #5. 2018.125.

I went to a million (give or take) in-service courses as a teacher/principal.

I think they are called “professional learning” now and I also know they “count” towards accreditation each year.

I also devised and delivered many as both a teacher and University tutor and Adult Educator.

So what is this about in relation to my final November notes?

It’s how my personal development was & is enhanced by having cancer.

I am aware I have written at some length about the processes I have learned behaviour-wise and they are here, on the page “Denyse and Her Cancer Story”.

What I will do now is write about my changes in behaviour and attitude and how this can be linked to my cancer diagnosis. To make it easier and for me to see the changes, it will be in photos.

  • I gained independence
  • I became much less anxious and fearful following my diagnosis and subsequent BIG surgery
  • I tried new things with greater ease than ever before
  • I knew that to follow the processes and trust in the professionals, I would be OK.
  • I sometimes had to challenge the negative voice inside that wanted it all “done and now”
  • I found calm in more ways than I realised: particularly by going outside, into nature and doing art.

And then more:

  • As I already knew from the experiences of ‘exposure therapy’ the more I did the more I could do with increased confidence
  • Things do not occur linearly nor with ease and of course there were (still are at times) so tears that spill over and some worries
  • What is different now is how quickly I recover and re-group
  • It feels so much better for me to be a calmer person who is less afraid to travel, meet up with friends old and new and see greater times ahead
  • I can also put the “cancer voice” back in its box with relative ease by using my thinking strategies well.
  • I no longer try to ‘case manage’ anyone else’s behaviour.
  • I accept with great assurance that not only am I doing the best I can, so are most people
  • I am much more likely now to reach out a hand in friendship and care rather than recoil because of the anxiety and fear based on social engagements and effects of IBS.

And this is why and how having cancer helped me grow. It is a learning process of course. However, I am loving how my life is now and what I have gained back from this past 18 months living with a cancer diagnosis.

There is such a phenomenon called Post-Traumatic Growth. Article can be found here.

This resonates with me:

Types of personal growth

People may experience different types of change while coping with cancer, including:

  • Improved relations with others. Living with cancer may increase feelings of closeness or intimacy with family or friends. It may make it easier to connect with others who have had a traumatic event.
  • New life experiences. Having cancer may change your priorities, causing you to make different life choices. You may be motivated to make a career change, overcome a fear, or fulfil a life goal.
  • A greater appreciation for life. A cancer survivor may have an increased regard for life’s value or a new sense of vulnerability to death. This awareness may help you appreciate the world in new ways.
  • A sense of personal strength. Living with cancer can help you develop increased mental strength and a sense of empowerment. You can be proud of what you have accomplished.
  • Spiritual development. Some people living with cancer find they gain an increased interest in practicing religion or adding spiritual depth to their daily lives.

Having post-traumatic growth does not mean that you have completely overcome the stress and other feelings about having cancer. Growth and suffering can happen at the same time. In fact, most people who report post-traumatic growth also report having struggles. A person may grow in one area of their life and not another, or in a number of areas at different times.

I have been incredibly fortunate of course to have the surgeries and treatments and I never downplay cancer but as an educator I know what it has taught me and continues to teach me.

Have you had experiences that have changed part of your life and your outlook?

Please share!

Denyse.

Joining in with Leanne for Lovin Life linky here.

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November Notes #3. 2018.119.

November Notes #3. 2018.119.

I have reflected and decided that…..my daily “outfit” photos will continue.

Initially I was going to stop at the 12 month mark, i.e. end of October 2018.

And then I thought, go to the end of the year.

A blogging friend said “stop doing it if it has served its purpose.”

This was good advice and then I considered what my purpose was and is.

  • initially it was to get a more confident me to have a photo taken and put it on social media. (Y)
  • then it became enjoying finding new items of clothing that fit and were ‘on special. (Y)
  • as it continued into the beginning of 2018, I set a challenge of “no repeating an outfit. (Y)
  • the above petered out as I began dressing for the situation each day and so needed to be mindful of the weather and where I was going. This has continued (Y)
  • to be noticed as someone who is/was prepared to be photographed during face altering cancer surgeries(Y)
  • sharing my images on line with many hashtags became tedious and I have a private account so #hashtags are not even seen and I stopped (Y)

What now?

I keep on. I do agree with my fellow Head and Neck cancer patient friends on-line and in real life that each of us needs a purpose each day and one of mine that is 99% non-negotiable is to:

  • dress with purpose
  • have a photograph taken
  • go out for a coffee alone, with my husband or meet up with a friend.

The following collages are from around March 2018 until October 2018.

Scroll through to some fun and other images…including one or two of the Instagram Photographer Husband.

Here’s a few more reasons why this will continue…for some laughs and to remind ME how far I have come despite a cancer which took away half of the inside of my mouth.

Thank you most of all the my partner in life for care, encouragement, saying “smile” to me, and loving me!
The feeling is mutual. This photo was before one of our Morning Tea ‘dates’ recently.

What do you do with purpose each day?

Have you been sharing what you wear on social media?

Tell us more!

Denyse.

Joining with Leanne (who is doing outfit shots and looks amazing!) here for Lovin’ Life linky on Thursdays.

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