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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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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Observations in October #2. 2018.104.

Observations in October #2. 2018.104.

Are we humans ever truly content with ourselves?

I am asking the hard questions today as I know personally, I find this tricky.

My husband/guru tells me “life it about living in the present”. OK. Not just him, but everyone who preaches mindfulness seems to have this view.

I can do this on some occasions now. I can bring my thoughts back to where I am (not so good ones too) and let them go of their own accord.

What made me observe this today?

My appearance. My weight. My changes.

For many decades I used food for calming and soothing and hid from much of my emotions this way. I often ate secretly. I have written about it here. I was performing well academically and professionally but not within my care of myself. The only, easy way was eating what soothed me. 

Back to the present.

I’ve had four years of over-arching anxiety related to life changes and transitions which actually resulted in not only Irritable Bowel Syndrome (diarrhoea) but a reduced appetite and a simple meal regime. I did not go out much at all. I was ‘at home’ in 2016-mid 2017 because of the increased symptoms.

I lost weight. It had started slowly in the year before we left Sydney but continued gradually until I found out I had cancer in May 2017. WOAH. Here is the page with the cancer stories if you are a first time reader.

From the time I was diagnosed with cancer in my gums until I came home from hospital it was inevitable I lost weight. I did. I was focussed on getting past the surgery stage for more than 7 weeks and if that is not an appetite suppressant, I do not have any other ideas. I wore clothes that were baggy but were not my fattest clothes as almost all of them were consigned to charity bins in the previous year. I did not think I would wear them again yet I was very reluctant to buy clothes which fitted me well.

I managed to convince myself to get some nighties and other items of a smaller size for hospital and recovering at home but it held no joy in me to need to do this. Cancer was my upper most thought. Then, once surgery was over, and I was able to finally sip water, and try a clear fluids diet in the 2 days before I came home, the dietitian visited me.

I was bombarded   given the message over and over that I needed to EAT what and when I could and that it needed to be foods of full-fat, high protein and smooth enough for a mouth with only a few teeth to get down. I had never, in all my life, been told NOT to lose any more weight.

I was weighed in hospital and then once I was home, because of the addition of an anti-biotic that played havoc with my gut I did LOSE weight. I got to the lowest I can remember. Ever. And it did not feel good. I knew I was not well.

Once the diarrheoa disappeared and my GP said ‘eat what you like and what you can keep in’ rather than the high protein/milky drinks on offer via the dietitian, I got back to a weight where i felt comfortable and well.

This lasted for a very long time.

Sharing My Image with The On-Line World.

Just under a year ago, my wellness was a great feeling. I began to think about going out by myself for a coffee. It took me until November to do that, and I decided to account for my day by entering a photo each day on Instagram under the various hashtags including:

#everydaystyle

#dresswithpurpose

#outfitoftheday

Many of my on-line friends, family and friends found my daily posts and supported my photos with ‘likes’ and comments’. I found a love of shopping for bargains again. It was fun and I was rewarded by the feeling and knowledge that I was doing this for myself and finally I seemed to understand it was good to feel great on the outside.

Cancer meant more surgeries, and more messing about in my mouth. Food intake became protein items such as mince based meals which I could easily eat with a few teeth and a tongue and treats became staples: little cakes, small donuts, icecream. Each day had something like that in it. I did not gain weight much at all over the time from October until my last surgery in May 2018.

Photos of the day became something others with cancer discovered and they liked the idea of dressing with prpose. With head and neck cancer, because our cancer is usually visible to others, eating and drinking out is seldom done even just going out. So, I was flattered to be followed and asked more about it.

Then, a day came I had longed for…and it had been delayed so it was even more special.

I had the upper prosthesis of teeth added to my mouth. It was in late August. It felt very strange and initially I could not eat much at all. Over time, I could as I became confident of my ability to bite and chew and now…..

I began to gain weight.

Boo. It is not much at all, and I really need to put it in context. 

I have gone from very restricted eating and feeling deprived but I knew I had an end in sight. 

What has been interesting to observe in me is my behaviour changes.

  • I am not hiding my eating like I did.
  • I am limiting my treat food.
  • I am realising that I cannot use food to deal with emotions any more.
  • I am also needing to come to terms with what life is like for me now.
  • I am considering no longer doing the “outfits of the day” posts because they are almost a year old.
  • I may replace them with a “self-care” theme.
  • I am having a small internal battle but less so as I chat with my husband about it, and also follow a mindfulness eating guide.
  • I am wearing my fitbit and aim to move more than 6K steps in a day. I am a work-in-progress!

I thought getting teeth would be the best and it is…but I can eat a very wide range of foods again…but I no longer want to end up very wide again!

It has helped me to share this so thank you for reading! I hope you made it this far.

Back to where I started. Are we ever really content with ourselves?

Denyse.

Joining the lovely Leanne and friends here for Lovin Life Linky and for the record, I am here with Leanne when we finally caught up for a coffee…and something to eat recently!

 

 

 

 

 

 

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Courage, Exposure Challenges & Me. Part One. 2017.110.

Courage, Exposure Challenges & Me. Part One. 2017.110.

Background.

I have mentioned a while back here on the blog that for quite some time, IBS, fear of having to find a loo quickly, anxiety about travelling on the M1 to Sydney were all contributing to a heightened sense of anxiety and worry. So much so, that I found it stressful to have family here to visit and resisted entertaining people. This was further exacerbated very early in 2017 when some very hot days in NSW, seeing a HUGE line of cars which could not move on the M1 because of a major accident and my mind immediately imaging what it be like for me to even contemplate such a happening that I literally and figuratively FROZE with fear. My planned visit to my father’s in Sydney for his birthday in early January was cancelled. By me. Crying, sad and fearful me. I felt so guilty but I also felt incredibly relieved. Interesting!

What is exposure therapy, or as I like to call it ‘personal challenges’?

Here is some information:

Exposure therapy is often essential if you are to overcome your anxiety disorder. The cognitive behavioural treatment of  conditions such as: panic with agoraphobia, simple phobias, social anxiety, obsessive compulsive disorder and post traumatic stress usually entails an exposure component.That is, you must subject yourself to the situations you are worried about in order to beat anxiety.
Although this sounds frightening, your therapist will give you the tools to cope with confronting your fears (e.g. rational thinking, slow breathing and isometric relaxation).

The guidelines for exposure therapy are that the sessions must be
* graded
* repeated and regular
* prolonged

Graded:
 Your therapist will work with you to determine what would be an appropriate first step; it should be difficult enough to provoke some fear but easy enough for you to be fairly confident you can do it. Once you can cope with Step 1 confidently, then you can move onto a more difficult situation and gradually work up your most feared scenarios.

Source: http://www.anxietyaustralia.com.au/exposure-therapy/

Shortly after my decision not to drive to see Dad, I summoned up enough courage to keep my next Psychologist appointment after I had been to my lovely GP to tell her what had happened. Rationally I knew what I was doing and feeling was not helping me but I could not escape from the rope fear and anxiety had wound around me. I also was NOT diagnosed with an anxiety disorder nor was I depressed but my behaviours and resistance to trying the challenge myself were making me (and I guess those who loved me) a bit frustrated but kindly not showing it much! I resisted even though I would tell my professionals I would give the exposure ideas a go in a graded sense it never seemed to me anyway, to be enough.

Some of the ways I was ‘convincing myself’ that things were going well. Deep down, I knew they needed to be better and only I could change that.

My Personal Challenges Getting Me Started. 

Recently I have been listening to Brene Brown on her Rising Strong – A Spiritual Practice CD and she talks of the stories we tell ourselves because our brain wants us to be rewarded with a shot of dopamine when we work out the story to fit the situation. It does not, however, mean that having that story makes you better or right. It IS just a story. I know I was telling myself many stories back in January to March. I know that they were wrong too but I could not even see myself being able to move further along the exposure challenge way. Until I HAD to.

Early April 2017. The BIG challenge after a few smaller but important ones.

It is no secret to readers here and Facebook followers and friends and family that my teeth, notably my upper jaw and gums had been giving me hell for about 8 months to this point. After some nervous but successfully personal challenges – driving on M1 to the Dentist, discussing what treatment I would need and back and forth, I faced 6th April. The day my hub would drive me to the dentist for a 1.5 hour extraction of both the bridge holding my 5 front teeth and the teeth themselves. I cannot lie that I was not scared. Not about the procedure actually but about whether my stress levels about IBS and worry of IBS would escalate. On the advice of our new then GP, I had valium and meds to counter any fears of IBS and with my hub taking me and staying in the same room with me, and listening to a CD of relaxation, I came through the biggest challenge I had to date.

How That One Event Helped Me Go to Sydney.

I drove home, alongside my caring husband, congratulating myself for having the courage to go beyond my fears and as it is said, do it anyway. I recuperated with relative ease and drove back by myself to the dentist after a week in a more relaxed and calm manner. It felt so good!  Then the so-called bigger challenge (exposure therapy-wise) was for me to drive to Sydney to see Dad. I do have to explain that it was because of ME I had to do this, not because of any pressure from him. He just wanted me to feel well and be less anxious. I did that drive, caught up with him, took him some meals and felt very pleased to have met the challenge!

So, there I went. Going well…but there was more, waiting around the corner…as regular readers know but I will continue next week!

Part Two Comes Next Week. 

Have you had anxiety or fears about doing some things in your life?

Have you overcome them?

Tell us about this.

Thank you for sharing!

I believe it IS important to share.

Denyse.

 

Joining with two blogging friends’ link-ups: Kylie here who hosts I Blog On Tuesdays and Leanne here who hosts Lovin’ Life each Thursday.

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