Sunday 27th 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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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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Second Six Month Check-Up…With Myself! 3/2019.

Second Six Month Check-Up…With Myself! 3/2019.

What is this six month check-up about?

It is about my assessment of my physical and emotional health for the second 6 months of 2018.

Oops it is already 2019 I know but I have just scraped in I believe.

Here I go, following on from the first six month check-up with myself, here.

It’s no secret that when you have a cancer diagnosis that check-ups are both regular and scary. Regular ones are like this protocol for my head and neck cancer:

for the first 2 years: every 3 months. I have completed one year and really only had ONE formal check up because…I have been for surgery with my Professor 3 times post initial big surgery, and my prosthodontist is checking inside my mouth at all of my very regular visits. 

for the next 3 years: every six months. This assumes no symptoms in between checks. On Tuesday 8 January my mouth needed a check as skin was growing more than it should. I was relieved to know it is not a cancer recurrence but I did get news that more reconstructive surgery could be ahead. I am still absorbing this news. 

Let’s get started:

July –  December 2018.

My Contribution to Our “2 Person Retired” Household.

  • cooking my meals which can be eaten with little chewing, with good nutrition & taste until I could eat in a more normal way
  • cooking more meals that we can eat together as I got my upper teeth prosthesis we get to do this
  • making cakes & biscuits. As I can eat cake & now some biscuits, there is greater variety for us both. I still have a stash of small iced cakes for me and un-iced ones for my husband to which I now add (at his request) sultanas and walnuts
  • cleaning the floors that require vacuuming each fortnight – oh so necessary but thank goodness for the battery-charged stick Dyson
  • cleaning my en-suite bathroom and all surfaces of shelves, sets of drawers etc in the house
  • ensuring all plants outside are watered and cared for – watering, moving them around as need be and pruning
  • grocery shopping now my full responsibility as there is a very convenient local Woolies. My husband picks up some needs for himself at the local IGA.

My Self-Care Routine.

  • I would like to think I have this down pat. I do not. I sometimes do too much and wonder why I am tired or tetchy.
  • I kept the same first sentence as last time. I have made it a priority to recognise my fatigue before it really hits and I also want to be less focussed on social media for a time each day.
  • Even though I was someone who loved her busy-ness in work and then when caring for our grandkids and part-time teaching I now know I am better with stretches of time that are mine
  • I am getting better at my ‘going to sleep’ times and continue listening to some ‘sleep stories’ via my Calm meditation app
  • I know for sure I am not in a race for self-care or self-improvement and I do think marathon rather than sprint much more than I did 6 months ago.

Love sent to me by a friend. A beautiful mandala crocheted blanket: perfect in the cooler months.

My Care For Others.

  • I am getting better at this one!
  • When I was recovering from cancer surgery in those months from July to November 2017 my physical restrictions and mental tiredness meant I could not do much at all
  • I now know the value of caring for and about others does not mean I have to fix anything 
  • I have stepped much further away from my “must fix everything for everyone” self.
  • I need reminders from myself about this and usually I ask myself the question “who am I doing this for?” If the answer is to make me feel better I no longer do it.
  • It is essential though, to know each of us is connected to the rest of the humans in one way or another and to share what we can for the common good
  • I believe this means my people pleasing has diminished even more in the past 6 months by setting boundaries
  • I know the boundaries for me and that how others are behaving might relate to their boundaries. This is big learning life lesson for me.

With Naomi, our property manager, on the Tenants Awards’ night where we won Tenants of the Year “Gratitude”.

My Physical Appearance Each Day.

  • In  2018 over time my physical appearance has taken on a new dimension with new & colourful clothes which suit me and fit well as I continued to #dresswithpurpose each day
  • It is also something I look forward to as it is part of the way in which I self-care to take myself out for a coffee.
  • I continued having my photo taken and into 2019 it will continue
  • I am keeping myself honest about my appearance too as I know my weight has increased as I can eat not only more easily but from a greater range of foods
  • As someone who was very overweight for decades  – read about it here – I can still become a little concerned about the weight creeping on but am now seeing myself as being healthier as I do eat better than I ever did.
  • Instead, I took a challenge to dress well each day quite seriously. It was a self-created challenge. I am not going to stop it as I know it helps me each day.

With this man by my side “we” can do and be all we need. Love is our relationship that will celebrate 48 years of marriage in late January 2019.

Summary.

  • I am happy with many aspects of my six month review as I know I feel better emotionally and physically
  • I have taken on board some disappointments relating to my cancer surgery and the on-going work inside my mouth and I trust my professional team wholeheartedly
  • I am glad to have found a support group for Head and Neck Cancer patients on Facebook and it is making a difference to have a kind and safe place to share stories.
  • My confidence about myself and my ability to re-join the world more widely was proven many times as I drove myself to functions where I knew no-one and socialised, and met up with friends for coffee and cake
  • I also was finally recognised for my service to students of N.S.W. Public Schools in December and that closed a gap in the circle that had been messy in terms of my almost 40 year career.

Met fellow blogger and Central Coastie Sanch for morning tea.

 

I believe I have allowed myself, even writing this, to be vulnerable. I am taking braver steps each day as I not only recover from cancer but learn to live well as a woman who will be 70 this year!

 

Have you ever considered a ‘check-up’ with yourself?

It could be a good thing for you to ask yourself “how am I going?”

Thanks for reading.

Denyse.

Joining with Sue here & Leanne for MidLife Share The Love Linky on Wednesday – the first one for 2019.

Joining in with Leanne here  on Thursdays for Lovin Life linky.

Hello everyone!

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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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Changes To ‘MY’* Cancer Recovery Plan. 2018.30.

Changes To ‘MY’* Cancer Recovery Plan. 2018.30.

Are you a planner?

Are you someone who is pretty well organised ahead of time for: birthday cards to be sent, lists for shopping to be made, appointments made and kept…and attended…should I go on?

Well, I am.

It is part of my DNA I reckon!

Yet, as I wrote here only last week, there I was saying I was becoming used to uncertainty.

That was Tuesday.

On Wednesday  28 March 2018 I got an inkling things with my cancer recovery were not going according to MY* plan. That is, what I reasonably anticipated given the information I had prior to each surgery and after it. OK, I admit it: once I hear a time frame I tend to believe it and stick to it.

Do Read on.

What Plan Did I Have?

Not for the year I mention..but you get what I mean!

A linear, calendar one of course! That’s how I have been used to life moseying along. I know, I am supposed to have embraced uncertainty but I admit, like 99% of us humans, I am digging the certain …the plan….the ‘being sure’.

  • 17 May 2017: Cancer Diagnosis Received by a telephone call from the Oral Surgeon who took the biopsy the previous week.
  • 18 May 2017: Meet With Head & Neck Surgeons at Chris O’Brien Lifehouse* Camperdown in Sydney for Overall Diagnosis and Plan For Radical Surgery.
  • 24 May 2017: Meet with Prosthodontist at Westmead Oral Services who will oversee and make all to do with my ‘newly reconstructed mouth’ during and post surgery.
  • 30 May 2017: Second Visit to Prosthodontist and CT scans readying my Professional team to make decisions about parts of my leg to be used for reconstructive surgery in my mouth.
  • 6 July 2017: Big Surgery: #1. 11 hours.
  • 6 July-15 July 2017: Recovery in Chris O’Brien Lifehouse.
  • 15 July – 27 July 2017: Recovery at Home, Treatment of Leg Wounds by Community Nurse, Visit to Surgical Team, A/Prof Ebrahimi and Justine Oates – Head & Neck Cancer Nurse Specialist.
  • 28 July 2017 – 21 September 2017: Recovery at home, visits by Community Nurse decreasing and in mid August I began driving again as ‘boot’ on leg was off. Independence increased.
  • 21 September 2017 – 9 October 2017: Continued wellness returning, eating always a challenge but doing what I can to prepare meals for me, seeing our GP for support (from July actually!) for any concerns I had inside my mouth. If he had any concerns, I could contact Prof Clark.
  • 10 October 2017: Visit to Chris O’Brien Lifehouse to see Prof Clark. Told 2nd Surgery would likely be before Christmas.
  • 11 October 2017 – 5 November 2017: continued independence and back into life as best I could. Started my Outfit of the Day pics!
  • 6 November 2017: Visit to Westmead for planning for next surgery. I admit, I often do not exactly understand the ins and outs of my surgeries… even though it is well-explained. I sometimes have to ask my husband about it. I blame being spatially-challenged and that it is all happening inside my mouth! 
  • 8 November 2017: Phone call from Prof Clark’s Practice Manager, Julie who is awesomely patient with ME that my 2nd surgery is next week! OKayyyy. And it is a day surgery only.
  • 15 November 2017. Leave the Central Coast at 6.00 a.m. to get to COBLH* by 9.00 a.m. We made it. But I confess my anxiety was high and tears on the Harbour Bridge in peak hour traffic were evidence of that. Surgery around 2 hours at 11.30 and we were on our way home by 3.
  • 15 November 2017 – 20 November 2017: Recovery at home. More stitches and re-arrangements in my upper mouth was OK. Pretty painful as nerves seem to have been affected by it did recede. But, a skin graft was taken from my right thigh to add extra skin inside my flap to grow to help my upper lip reconstruction. Visited Prof Clark at St George Hospital. I was going OK but one side of the opened then stitched ‘flap’ was showing some silicon (should not have) so “keep an eye on it”. We did.
  • 29 November 2017: weird but wonderful event. I could have a LONG bath…previously I could not get my leg wet…and over time in that bath, undo the bandage and let the wound covering get wet. It did, and I did this over the next few nights. Until, it eventually came away leaving pink new skin.
  • 5 December 2017: To Prof Clark at COBLH. The flap area did keep retreating somewhat and the silicone was showing. Prof Clark cut a bit off. Then he asked my husband to take pics inside my mouth and send them to him from time to time.
  • 6 December 2017 – end of December 2017. I admit I was worried about the flap and what that might mean but Prof Clark eventually said, things are OK and you can stop sending the pics. Phew. It is VERY hard to get pics inside the upper mouth!
  • January 2018: Just the usual at home activities and going out for a coffee & buying clothes (shh).I knew a 3rd surgery was ahead but unsure when. However, it was to my surprise that I found it would be on 7 February 2018.
  • 6 February – 7 February 2018: No drive down on the day of surgery this time, meant after an overnight stay in the same street as COBLH I could walk with my husband up to Day Surgery admissions by 6.30 a.m. and was in theatre by 7.30 a.m. having said hello to Dr Deshpande (my Prosthodontist) and being blown a sweet kiss from Cate Froggatt who is the Chief Nurse working alongside Prof Clark.
  • 7 February 2018: Back in Day surgery by mid morning and got dressed to go home. Was sporting two foam pieces with stitches attached out of my nose, above my lip…that WAS a surprise. Mouth was its usual uncomfy place but with added hardware. More abutments had been added to my ‘new jaw’ and a stent (mouth guard) covered it all. OK. Hard to get used to. It was uncomfy and eating even more of a challenge.
  • 14 February 2018: a hot and long drive to see Prof Clark, and the helpful Priscilla looking after my IPTAAS forms, and then chatting with Cate about my blog. She had read it and was recommending Nadia at Beyond Five check it out. My foam pieces and stitches came out. Yay. Sent home knowing then I would not see Prof Clark again till a cancer check on 22 May 2018 but would see a LOT of Dr Deshpande.
  • 23 February 2018: to Westmead where Dr Deshpande’s colleague (who had also attended my surgeries) Dr McLachlan removed the very stinky stent. Dr D had a broken hand so my mouth was observed by him and anything that needed to be done was by Dr McL. They were so pleased with the health of the gums, they said I could have the stent off. Cue smiling and hallelujah!
  • 26 February 2018. Disappointment but Prof Clark deemed that the stent go back on. For the reasons of keeping the gums in check. I needed to remember this is about getting my mouth right!
  • 1 March 2018. To Westmead and both Dr D and Dr McL observed and cleaned the area and put the stent back with gel only. NO gauze.
  • 1 March – 6 March 2018. In pain. A lot. Where the stent met my inner cheeks. I rang Dr D and he told me to return the next day.
  • 7 March 2018. Dr D reduced the edge of the stent and it was back on and I was in much less pain. Phew.
  • 15 March 2018. To Westmead where stent was removed for impressions to be made for the ‘false teeth’ to be made in wax to get an idea of how my smile and position of upper teeth will appear. At this visit, Dr D reiterated his concern that my mouth is too tight to take the implants.
  • 28 March 2018. To Westmead where the fruits of Dr D’s labours in the time since last visit had me happy (after some initial reservation) to see my smile again.

So what has happened since last week is that on Thursday before Easter, I was told by Dr D (after my phone call from Prof Clark’s Priscilla booking me in to see him early May) that in consultation with Prof C, the fact that my mouth was too tight would mean a 4th Surgery on 16 May.

I was sad. I was a bit over it all but I also knew deep down this was probably going to happen.

What now?

12 April 2018. To Westmead to have my upper false teeth fitted to the abutments for me to get used to the teeth in my mouth for the next month. I am unsure that they will help me with eating but we shall see. I am certainly pleased that Dr D wants me to try these teeth as he believes there is a social benefit too.

1 May 2018.  To COBLH to see Prof Clark, wearing my ‘new but temporary teeth” and for him to check out the area ready for vestibulplasty #3 and surgery #4.

16 May 2018. Planned Day surgery. We will come down and stay the night before. From what I am told by Dr D the plan will be for me to recover for 10 days at home (with the potentially stinky gauze under the new stent. Sigh.

22 May 2018. Post- op Check up at COBLH with Prof Clark. Hopefully all is well and any stitches that need removing are. Unsure if I will be wearing the foam blocks again.

Late May 2018: Westmead for stent to be removed, gauze taken out, area cleaned and impressions made for …the implants. Eventually I will have the implants but it will depend on the healing.

May into June 2018: Keeping the stent in all the time with visits at intervals to Westmead.

June into July 2018. As above, with a view to impressions and so on for implants.

What have I learned about planning and cancer?

  • That each person’s body heals at its own pace and it may not always be what the optimum is.
  • When I learned about the surgery I would be having, in May 2017, it was set out that from surgery (it ended up being in early July) to implanted teeth, is usually around 8-9 months.
  • What is my forecast now that a 4th surgery is planned?
  • It is close to 12 months from the first surgery.
  • In fact, this 4th surgery will be one day short of the anniversary of the day I was diagnosed.
  • I accept that I have the best people caring for me who have my best interests at heart.
  • I accept too, that despite my planning and the fact “I do all I can to heal well” sometimes bodies do what they do.

Last Wednesday was a highlight of HOPE. I think every cancer patient wants HOPE.

Mine came unexpectedly when I saw myself SMILE again. It was better than I ever imagined.

In light of my selfies and all the record-keeping I have been doing in processing who is this Denyse now…I made a small video of my face…and smiles and more from my 65th Birthday to last Wednesday. It is good for me to see the progress. I hope you can check it out too.

I know this was a long post and if you read all the way, thank you!

It was helpful for me to write it and to make the little vid.

Denyse.

Joining with Kylie Purtell for I Blog on Tuesdays here.

Joining with the linky called Midlife Share the Love with Sue and Leanne here on Wednesday.

And lastly but never least is Leanne’s Lovin’ Life link up on Thursdays here.

 

 

 

 

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My Cancer & Surgery #2. 2017.128.

My Cancer & Surgery #2. 2017.128.

I know I have written about the cancer I was diagnosed with on quite a few occasions. It still mystifies me, as it does the medical and surgical teams, how I got cancer at all. However, through the reading I have done – little via Dr Google – mostly from this site as recommended by my team from the Head and Neck Clinic at Chris O’Brien Lifehouse it appears that I have a rare cancer or at least it is most unusual one for me to get. I like don’t like that I am that special. 

The condition I was diagnosed with was squamous cell carcinoma in the upper gingiva. I have also seen it on the operation report as verrucous carcinoma upper alveolus. Whatever is the difference..and they are all contained within my upper part of my mouth it has meant a long surgery written about here and even longer recovery in hospital here and at home here.

WHY IS HEAD AND NECK CANCER DIFFERENT?
Head and neck cancer is incredibly complex and diverse. It includes more than 10 different cancers that can affect a person’s mouth, tongue, salivary glands, skin or voice box.

In the past, smoking was the most common cause of head and neck cancer typically affecting areas like the mouth, throat and voice box. However, today in Australia, many head and neck cancers are due to other causes. For example, the human papilloma virus is the most common cause of tonsil cancer, which is rapidly increasing in incidence.

Skin cancers on the face are mainly due to sun exposure and may extend to the eyes, ears, nose and salivary glands. For many other head and neck cancers, such as thyroid cancer, the cause is unknown. Source: Beyond Five.

I had been told following my first surgery that there would be two more surgeries to come. I was not happy about that but needed to accept that to get a ‘working mouth’ back it would be necessary.

I had a check up with Professor Jonathan Clark at Chris O’Brien Lifehouse on 10 October 2017 where he found all my recovery going well and no new issues with lymph glands  – there never had been any cancer found there but this was my first 3 month post-op cancer check. He said my next appointment would be to have a CT scan of my mouth to see how the bone (from the leg) with the added implant bases were settling, to see the specialist dentist at Westmead and then to wait to see when the second surgery might be.

The CT scan went well. The visit back to Westmead was fine now I knew the dentist so well and he is extremely kind and comforting. He explained how my future 2nd surgery would go and what would be achieved. OK. Done.

But when would it be? Before I had a chance to even think about getting mentally prepared for surgery in the coming days a phone call came from the Prof’s practice manager that it was to be DAY ONLY (what?!) surgery on Wednesday 15 November. So, that was something different. To go home on the same day!

We (ok, I) had a nervous drive to Sydney that morning, in peak hour traffic, leaving here at 6.00 am and arriving in time for the pre-admission of 9.00 am. Then my prep was fine and I was wheeled to surgery (same theatre as last time as it is where the Prof prefers to work) ready for 10.30 and there was a delay. I am not good with waiting. However, a trip to the loo, a chat to the anaesthetist and then to Prof and I was wheeled in at 11.30. I do not remember waking in recovery but I know I went OK and was back in the day surgery area feeling well (as you can after 2 hours surgery!) and by 3.50 pm ready to leave with my husband for the drive home. I was a good recoverer.

It might seem strange but for me the surgery in my mouth has never been well-understood by me. I say it is because I am spatially challenged AND that the changes are within me. So I have some troubles feeling what is going on in my mouth because using the tongue is always something that tends to magnify. I have also been in MUCH more pain than I recalled from my first surgery. So, on Day 5 post surgery the Prof wanted to see me and down to St George Private Hospital we went. It was a longer drive and on a not great day but I dealt with it pretty well and hardly did any front seat driving. My husband is a saint putting up with me.

A ten minute consultation (on time!) and we were back on our way home. 5 hours driving in one day. However, the Prof did not seem perturbed by my levels of pain and discomfort most of the time. I also cannot eat as well as I could (and that was limited then too!) after my first surgery some weeks down the track. So, I have been a relatively unhappy recoverer this time. Parts of the stitches on one side have come away, and some of the places where he put stitches feel strange. The purpose of this surgery was to open up part of the flap (the roof of my mouth taken from my leg) and inspect the condition of the 5 implants…which are WELL- EMBEDDED! Good news.

Then he and the specialist dentist put the abutments (screws) on the implants and added some skin from my right thigh to help the implants become adapted to my mouth. I am not explaining it well. Sorry. However, the added pain including nerve shooting types through my lip are driving me cray cray. I was so concerned I even sent the Prof a photo of the inside of my mouth. Can you imagine how hard that was for my poor hub to take?

I am sparing you these photos.

As I write this I have not heard back from him (yet) but I have sent more recent pictures today after his practice manager rang me. The thing I am finding (and have found since I first found out about the cancer in May) is that things are not well-explained AND unless I am ready with questions I get a very short appointment. We have been around surgeons a few times and know they tend to go in, do what they do, and go out again. I am hoping what I am feeling is normal. But it remains somewhat stressful for me. I see him again on 5 December and then the third surgery (I am not sure of its details) is scheduled for early February. But that could change I suppose.

UPDATE  1: The Prof sent me a brief email late Monday saying the photos of inside my mouth looked OK but to keep an eye on things and he will see me next Tuesday. My husband, who ‘gets what is going on in my mouth more than me’ is reassured that it is OK. Sigh.

I was feeling pretty low about it all on Saturday and it is hard. However as I write it is Sunday and I have managed to have a better day thanks to a regular intake of some food and medication for pain. I am somewhat better mentally now, Monday and have managed to eat something at meal times.

UPDATE 2: The nerve pain is likely to be coming from one of the implants my GP tells me and should settle. It is already somewhat (phew!) and yesterday I soaked in a bath for 20 minutes to allow the top covering of my donor site wound to come off and for the skin underneath to continue to re-generate and so far that is going well!

 

Have you had surgery?

Have you had cancer?

It can be so hard once you are home and there is no-one to ask. At least that’s what it is like for me.

Thanks for reading. It has been a LONG post.

Denyse.

Joining with Kylie for I Blog on Tuesdays and with Leanne for Lovin’ Life Linky on Thursdays.

 

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