Thursday 27th February 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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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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Appreciation In August. #3. 2018.76.

Appreciation In August. #3. 2018.76.

My Alphabet of Appreciation FOR FOOD This Week in August 2018.

Some readers know that I have been without any teeth on top since my cancer diagnosis in May 2017 and after radical surgery in July 2017 a whole new inner /upper mouth was created and once I got home after 10 days, I needed to learn how to feed me. So much is attached to food: texture, tastes, preferences for savoury or sweet, crunchy food or smooth but I have been limited. Very much. It has been a big lesson for me in patience, creativity, adapting and making the best I can of the reason I had to do this hard work – cancer. The list here is all of the foods I have been able to eat. Often they are not in quantities I may have consumed pre-surgery as my mouth gets tired (and I get bored) with some food rolling around in my mouth for ages.

In a week or so, I will have had new top teeth added and I have no idea (yet) how this will be. This for now, is all I appreciate that I have been able to eat for the past 14 months.

A.

  • avocado – in all manner of way: by itself and added to dishes.
  • apple: I have tried many times with apple – grated but it is too hard to get it swallowed as I cannot (yet) chew.

B.

  • bread – no crusts but can eat white or wholemeal as a sandwich, or small pieces into soup
  • biscuits – dipping ones: malt, orange creams, plain biscuits. I have tried “choc covered’ ones: messy! I miss savoury biscuits as I cannot bite nor crunch
  • butter – my preferred spread and it is needed to help food like bread go down
  • beef casserole with chuck steak cooked all day – meat melts in my mouth

C.

  • cake – my homemade cupcakes with icing and those from my friend Kyla’s shop
  • coffee – double shot latte when I go out, and I keep a range of packet coffee mixes here
  • crumpets – can be cut into 4 and spread with butter and honey, I can pop the soft part in my mouth and leave crust
  • cheese – kraft blue box cheddar, tasty grated cheese and parmesan grated
  • carrot – cooked and then blended and added to bol sauce, soups
  • chicken noodle soup
  • chicken mince made into sweet and sour dishes
  • chicken cubes cooked and made into a casserole with cream of chicken soup

D.

  • dairy milk chocolate

E.

  • egg (scrambled only) with C for chutney on B for buttered T for toast

Some photos of some selections of the foods I ate in the early days. 

F.

  • fish – in the form of S for salmon in tins & smoked salmon in small pieces for lunch in summer
  • fruit – very limited. See P for pear, M for mango
  • fillet steak – cooked medium, and cut finely, with some sauce for flavour, added to 2 min noodles.

G.

  • grains – nope. They stick in places in my mouth and cannot escape.

H.

  • healthy choices. I make as many of these as I can each day knowing how much my recovery and wellness needs.
  • honey : good with plain yoghurt when I first came home from hospital last year
  • spread on crumpets

I. 

  • iodised salt is a daily condiment to aid flavour since I think my taste buds are slightly changed
  • ice-cream. Not a huge fan but it soothes my mouth after surgery and vanilla is my go-to.

J.

  • jelly. Oh so much jelly when I first recovered after major surgery and sometimes cooling and soothing after smaller surgeries. In a little container. Sometimes with I for ice-cream.
  • jam. Adding some flavour to a toasted muffin. See M for Muffin and how this is eaten.

K.

  • kale K for kidding. I can eat NO  leafy veges or salad other than what I list elsewhere

More foods from my challenging eating days. Imagination and creativity helps me with meals.

L. 

  • lettuce in teensy tiny cut up pieces added to my taco bowl or a sandwich with vegemite and cheese

M.

  • mango – could eat cut up in a bowl using a spoon. It was a great addition to lunch in Summer.
  • minced meat. How I learned to love you and cook with you for me:
  • minced beef: spag bol, savoury mince, taco mince
  • minced chicken: as above
  • minced lamb combined with the minced beef has made the best savoury mince to date
  • minced pork: a version of san box choy – just the seasoning, and the mince and on some 2 minute noodles
  • muffin: toasted white one: I can spread jam on a buttered one, cut into quarters and eat the middle part, leaving edge
  • milk: in coffee and tea and on my breakfast every day. Before the first surgery I was not a fan of cereal and milk and now I am. See W for Weetbix.

N.

  • noodles – see above: 2 Minute Chicken Noodles added to meat dishes. I have to cut the noodles with scissors before eating so I don’t choke on a long thread!

O.

  • oranges – cut and squeezed and drinking their juice

P.

  • pasta – the spaghetti variety – cut up and sometimes tube one – but needed to be well-cut for swallowing
  • pumpkin soup – over it. So over it. Yet because it “is” a vegetable and healthy I had made and eaten this a lot.
  • potatoes –  as long as they are  mashed and buttered they went down well on top of my savoury mince.
  • pikelets: these are great with some butter and a spread. Warmed even more so.
  • peanut butter: sometimes on bread and sometimes on a toasted muffin.

 Q.

  • nothing comes to mind for Q.

R.

  • roast lamb dinner. Ok. Three times my dear husband cooked this and it was delightful, drowned in gravy and with burnt baked pumpkin and potatoes
  • rice. Oh how I have used rice: white: fried: and it is a staple that I can generally ‘get down’ with a meat/fish in some kind of sauce.

Meals and more meals. Dinner was easier than lunch often. 

S.

  • sweet potatoes have been good, blended with regular potato and added to meat dishes as well as soups
  • soups. I know they are good for the body and soul. I made many: chicken and veggies, ham hock and veggies and each was blended and frozen for future consumption. I have a range of packet soups on hard always. I can only eat (and have always preferred) a thinnish soup. Not thick at all.
  • sweets. I can eat some very soft sweets: this has been in recent months: milk bottles, strawberries & cream, pineapples.
  • sandwiches. I know that they are hard to get down but I do because I missed bread. So, the fillings – spreads or cheese or salmon need some butter or condiments and then I cut off all the crusts, and then the sandwich into cubes. I can now get down 8 rectangles. Before the past month or so it was 16 squares. Takes ages to eat.

T.

  • tomato condensed soup from Rosella in the can, with milk added is a comfort food from childhood and it gets a run regularly.
  • tomatoes. I long(ed) for the taste of tomatoes but their skin made eating impossible. Lately though, I have bought small vine grown ones, and I cut out the middle with seeds and juice and that goes on a taco or even a crumpet for a savoury taste
  • tacos came about when I was looking for NEW tastes. I make up the taco mince with the powder and freeze the cooked portions, making myself ‘taco in a bowl’ with added: tomato & lettuce (see above), tasty cheese, avocado, lite sour cream.
  • tea: cups of …and often with biscuits I can dunk.
  • toast…is eaten rarely but I have tried it in very small squares with some creamed corn on top and eaten with a spoon as well as with scrambled egg.

U.

  • unhealthy but delicious at times: treats that I “can” eat when I am out: bits of donut edges, some cakes with no nuts and some icing, a part of a scone with jam & cream. Chocolate: including latest I can eat: freckles.

V.

  • variety is what I try to have but it can be V for very hard some days and I just retreat to ‘old faves’.
  • very good advice from the dietitian before I left hospital in July 2017 was to aim for enjoyment AND nutrition in my meals and snacks and I do remember that often.

W.

  • water. I always have water near me and particularly when eating. I have not choked but water is a good lubrication in my mouth anyway so I have sips and swigs during my meal
  • weetbix. Who knew? Before surgeries for cancer I rarely ate cereal. For the past year it is my standard and ONLY breakfast: 2 weetbix, some sugar (oh come on, I cannot do these plain) and lite milk. And I will continue this breakfast when I have my teeth and it is a healthy one.

X.

  • of course nothing starts with X in this list but I will say taking eXtra care before attempting to eat food, and not talking as I eat (before surgery Denyse did) helps my food stay IN and then go down.

Y.

  • yellow foods: cheeses, butter, custard are dairy-based and they are part of my meals and snacks and I try to have
  • yoghurt in the fridge most weeks so when I feel like I need to be ‘virtuous’ I have some.

Z.

  • zooper doopers are always in the freezer. They are awesome post mouth surgeries but need to be cut into small, manageable pieces as I cannot suck. Seriously, not even using a straw with success. Unsure if this ability will return.

Treats have become a daily event but in limited quantities. I have remained around the same weight for the past 12 months and wish to stay that way. Increasing activity now I am very well is helping. 

 

I hope you did not get too hungry reading this!

Denyse.

Linking with Leanne for Lovin Life Linky on Thursdays here.

 

 

 

 

 

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