Tuesday 23rd April 2019

Two Years Ago: Before My Cancer Was Diagnosed. Pt 3. 35/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 3. 35/2019.

Thanks to readers who have commented on these posts.

They are, in some ways, very personal and maybe a bit indulgent but they are going a long way for me to feel better and recovering well from my version of head and neck cancer, found in my upper gums and under one lip.

The first two posts about the two years ago can be found here and here.

My last words on the previous post were these:

“take the teeth and bridge out, I HAVE to know what is underneath!”. I was a bit better-mannered than that with my request to my dentist but inside I felt these words more!

Why Did I Want The Teeth Taken Out?

For well over 6 months from late 2016 into 2017  this dentist and I worked on “what could be going on with my gums”.

This is why.

  • My upper gums were sore and red. They felt that way in part of my upper palate (roof of my mouth).
  • There was a ‘feeling’ of skin tearing up behind the covered part of the gums as I had a bridge permanently in my mouth.
  • The bridge (and a crown) had been added to the 6 front teeth spaces to add to my appearance and function as the original teeth had been heavily filled and already had been treated to the maximum by the dentist in Castle Hill in 2010-2011.
  • I went along with this procedure without question as I was promised it would be better. It was paid for by Medicare for people like me with chronic dental issues back then.
  • I admit I was ignorant of the what and how of the procedure but it seemed to be right. I trusted the dentist.
  • What did happen over and over from then until April 2017 is each new and subsequent dentist (3 in total)  told me “You are not cleaning behind the bridge properly”.
  • I did what I could. It was a very awkward and uneven space and even the dentists were challenged with their instruments.
  • “You have candida” I was often told. Yes, OK. I took so many fungalin tablets and added nilstat as a mouthwash only to find no change, and diarrheoa as a side affect. NOT something I welcomed with IBS already the ‘beast within’.

The mouth still hurt.

I had thorough cleaning at the dentist as late as March 2017.

The mouth still hurt.

I watched the gums slowly creep over the top of the front teeth.

The mouth hurt more.

But still this dentist wanted to investigate more even though he said theoretically he could take the teeth and bridge out.

I went through trying to get myself tested for nickel sensitivity – nickel is part of the bridge. I chose not to. I wanted action.

I could not eat much at all – combination of the very sore mouth and anxiety about it and good ole IBS.

So, the deal was struck. My teeth and the bridge they were on were coming out of my mouth on 6 April.

But wait….

I am too scared to both travel AND to do this! Right?

From my journal the day before:

On Wed 5 April I was nervous about the upcoming dentist trip

I did go out & do things but the “enormity” of what was ahead overwhelmed me

I broke down & just couldn’t see how I could deal with it

B was good at listening but I knew that despite the dread & worry & fear IF I didn’t go through with it it would be :

Avoiding

  • Would make it worse
  • I’d not get my mouth fixed

So I took steps to make sure I got there:

1. 1/4 Valium in arvo & then at night helped reduce the internal rumblings

2. I told myself it was a positive to be getting it done as it’s troubled me for so long I couldn’t let it go on & on

3. I needed to tell myself the outcome & process had to happen. I stopped thinking there was doubt or other choices. I needed to own this

4. I ate small because I was scared of IBS but that’s not new.

5. I knew I could take immodium if there was a reason

6. I used the hypnosis from audible in a big way

7. I had B taking me & he agreed to do it anything to make it work.

The day came. It was just after lunch. Not that I ate any! Yes, my dear husband did drive me and yes, I took medication as advised. I was warmly greeted by the team who really understood this was hard for me. I had my iphone and  earbuds and a hypnosis session ready. It started with LOTS of needles and reassurance all the way. I could give a signal to stop (I did only need that to tell them it was still hurting too much). I could also ask for a break to go to the loo. I did that once. By the time I decided I had enough…it was done. I was surprised. My husband had sat in the room reading as I was treated and it was nice to know he was there.

I knew there would be a denture put in – and whilst that did not hurt then  it did later. I had the model made the week before. So, then I was shown the teeth and bridge. I took a photo but not the teeth with me. The dentist’s opinion at the time was that everything looked OK gum and bone wise and I would see him the following week. I just needed to get back in the car and home. It was done! Over.

Afterwards I recorded this:

 Mouth sore & swollen

 Ice packs on my mouth

Taking medication – neurofen & anti-biotic

 Still got some bleeding (6 hours later)

Headache & tired

 Ate squashed pear, yoghurt & grated cheese & PButter

Very proud of myself and was told by B I was great.

Now if only IBS would bugger off!

Back to dentist next week to check it out & adjust the partial denture.

It

Is

Over.

Then I had about a week of pretty intense pain manipulating the partial denture in and out of the top gums. The gums were sore. I just expected that I guess. The following week, I re-visited the dentist alone with more self-confidence albeit in pain, where he adjusted the denture, told me what to look out for and I would see him in around 4-5 weeks.

And so, within that period of waiting, things did not progress as well as either of us hoped.

There will be a fourth part to this lead up to the Two Years Since My Cancer Diagnosis.

I hope that sharing my story is somewhat helpful to you. However, I must add, as my Head and Neck Surgeon told me:

“Denyse your cancer is rare and you getting it with no risk factors (smoking, drinking) is even rarer”

With Prof Clark – My Head and Neck Surgeon at Chris O’Brien Lifehouse.

Thanks for being part of the journey in these posts I am writing…for good reason and for information shared as I so often need to do since my Head and Neck cancer diagnosis.

Denyse.

Joining with Sue and Leanne here for Wednesday’s Midlife Share The Love linky,

With Leanne on Thursday for Lovin Life link up here AND with Alicia on Fridays for Open Slather here.

Thank you all for your link ups.

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Two Years Ago: Before My Cancer Was Diagnosed. Pt 2. 31/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 2. 31/2019.

For anyone affected by a life-changing diagnosis that comes after some time of illness or maybe there is no sign, time becomes a part of memories of ‘back then’.

In writing here on my blog, I know I am helping myself as I continue to process my thoughts, actions and concerns relating to my eventual and pretty shocking diagnosis is a rare cancer in my mouth. For those who would like to read about this in the series of posts here is the link to the page called Denyse – Head & Neck Cancer.

It was recently that trawling through on-line journals I realised how much I had gone through along the way so I wrote the first post in this series is here. 

This post takes a different theme which was relevant to why and how I was feeling and acting in those months from December 2016 into May 2017.

March 2017.

It must be just me. I don’t know how to settle well into my life now it’s over 2 years since we left Sydney and are making a retirement life for us. How come “I” cannot settle. What is WRONG with me? My husband is doing it with ease. In fact, he is already volunteering in two community organisations, is planning to continue his tertiary studies. Me? I face each morning with trepidation. I find it hard to get up. To what, I ask. I go through the motions of making it look like I am OK. But I cannot fool myself nor my husband. It’s me, I just do NOT know what is wrong with me…..I know my GP says I am somewhat anxious but it’s for a reason which related to stress about my IBS. She tries me on some anti-depressant meds briefly but they affect my gut. I see my psychologist who again tells me, “you need to continue exposure therapy.” I am losing weight because I am too scared to eat because of IBS.

This look on my face here is me gaunt and showing the fear within even with my then-smile. Underneath those teeth was …..no-one knew.

What Did I Do?

More of what seemed to help me. At least it passed the time. It did not ease the knot in my gut for long but I was focussing on self-help. I must have listened to 100s of hours from many. These are people whose words I continue to value and have all of their CDs still. I listen to few now, but back then I thought they were helpful for my mind to slow a little. I used to listen in a semi-meditative way or as I was making some mandalas or patterns. I found these people’s words matched a lot of what I was hearing from my husband and my psychologist too.

My blog was a great spot for me to gather my thoughts and be interested in others. I was so pleased that I HAD made my blogging a priority. Mind you, there were days when I was not interested in connecting on line…but I did and continue to do so in the overall goal of remaining connected.

I probably did not let on to many other than my poor husband just how bad I was feeling on some occasions. I felt bad about feeling bad! I wondered if there was any chance I could feel ‘like I hoped’. My former GP who I continued to see in tandem with my current one for the next 2 months, was kindly but even she seemed to run out of reasons why I continued to feel so anxious.

The age old question: Was I anxious because of the likelihood of IBS or was the likelihood of IBS making me anxious?

I tried SO hard to make my inner life a better experience! I did art of one kind or another most days, I ventured out on short drives when I felt well enough, I cooked a little bit but I was so anxious about people visiting I could not enjoy the company of family nor was there any way I would drive to Sydney to see anyone. Nope. Not on.

Here are some of the many sayings that I hoped to absorb and integrate into my life. These were posted on Instagram. That account was hacked in May so I no longer have the IG versions, just my photos.

And all this time, my mouth hurt.

  • The skin behind the upper gums where the bridge was continued to be inflamed.
  • No the extra cleaning done in early March (see first post) had not changed anything.
  • The skin was growing over the top of the front teeth.
  • This matter concerned me greatly. I know I told my husband often enough.
  • But, as no-one in the dental or medical field had deemed this to be of any great consequence, I continued on.

Sadly, in pain emotionally and physically.

I hope that this post is helpful in understanding that my internal dilemma was a huge influence as I thought “I made all of this happen“. It would appear, that I may have been thinking about cancer far longer than even I realised. It IS true.

Next time: I could not bear it any longer….. “take the teeth and bridge out, I HAVE to know what is underneath!”.

Denyse.

Joining in these link ups:

MidLife Share the Love: Here on Wednesdays

Lovin’ Life: Here on Thursdays

Open Slather: Here on Fridays.

Do visit these link ups and join in the reading and commenting. We ALL need each other here in the land of blogging and comments are our “GOLD”.

 

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Grateful For These Women. #IWD2019. 25/2019.

Grateful For These Women. #IWD2019. 25/2019.

It happened last Friday: 8 March 2019.

International Women’s Day.

I have always known about green and purple being the colours for women but not exactly why: this might help you:

Internationally, purple is a colour for symbolizing women. Historically, the combination of purplegreen and white to symbolize women’s equality originated from the Women’s Social and Political Union in the U.K. in 1908. Purple signifies justice and dignity. Green symbolizes hope.
Grateful for these Women:
My tribute via Instagram and Facebook, now here is for the women who have helped shape me to be the woman I am today. I also include those who love and support me, particularly since my head and neck cancer. So, from those who went before me, and those who have been born – to me and then to my children, I salute you all. The women I am so grateful to have in my life. And as I said too, those who are not here and there are many more, are remembered with love in my heart.

Top: Mum, Her Sister My Aunty Poppy, Their Mum, My Nanny. Mid: Me with youngest GD on her BIRTHday, My daughter with her eldest & second eldest and her youngest. Bottom: Me held by paternal Gran, on left is her Mum (Nana) and my Mum on right. Three daughters of our son! With my daughter.

When is International Women’s Day?
International Women’s Day (IWD) is celebrated around the world on the 8th of March.

What is International Women’s Day?
International Women’s Day is celebrated in many countries around the world. It is a day when all women are recognised for their achievements. International Women’s Day was first born out of labour movements at the turn of the twentieth century in North America and across Europe.

Since those early days, International Women’s Day has grown in prominence and reach, touching women in every corner of the world. The growing international women’s movement has helped make International Women’s Day a central point for action, to build support for women’s rights and their full participation in the economy, politics, community and in everyday life.

History of International Women’s Day
In 1910, Clara Zetkin, the leader of the Women’s Office for the Social Democratic Party in Germany tabled the idea of an International Women’s Day at the second International Conference of Working Women in Copenhagen. The proposal received unanimous support from over one hundred women representing 17 countries.

The very first International Women’s Day was held the following year on March 19th. Meetings and protests were held across Europe, with the largest street demonstration attracting 30,000 women. In 1913, IWD was moved to March 8th and has been held on this day ever since.


International Women’s Day in Australia

Australia’s first International Women’s Day was held in 1928 in Sydney. Organised by the Militant Women’s
Movement, women called for equal pay for equal work, an 8 hour working day for shop girls and paid leave. The next
year the event spread to Brisbane. In 1931, annual marches were launched in both Sydney and Melbourne and both marches continue to be held today.

Since these early days, International Women’s Day has continued to grow. It is a day to celebrate women’s achievements and both highlight and work to address barriers that continue to perpetuate gender inequality.


International Women’s Day today

International Women’s Day has become a time to reflect on progress, to call for change and to celebrate the courage and determination of the women who changed history, and those who will advance gender equality into the future. International Women’s Day is an occasion to review how far women have come in their struggle for equality, peace and development. It is also an opportunity to unite, network and mobilise for meaningful change.

About International Women’s Day

Those who cared for me (and still do!) when I was diagnosed with head and neck cancer in May 2017.

Top: Cate who has been at every surgery and is the one I see regularly on my check-ups Then: Justine who is a specialist H&N cancer nurse who helped me before the July surgery and in my recovery time at home. Then: Stef who was the oral surgeon with did my gum biopsy & was the person who sensitively told me on Wed 17 May ’17, “squamous cell cancer is in the gums”. Last: never least: Ofelia who has been by my side whether I am laughing or crying at my prosthodontist appointments.

My life, since head and neck cancer, has been enhanced by my social life. Even when it looked like it might be a bit hard, I managed to get out as much as possible – and still do, so I can meet up with people I know via blogging and on-line.

I am grateful always for connections…and made a collage of these and some more friends I have met with.

My tribute to the women on International Women’s Day 2019, #IWD2019.

What did you do on International Women’s Day?

I am grateful for my blog’s followers & to join in Australian-based link ups each Monday, Tuesday, and on Wednesdays, Thursdays and Fridays

 

As I wrote last week on gratitude here, for #ztt is is an antidote to fear.

Thank you Min for #ZenTipsTuesday which I will link up for here.

Denyse.

On Wednesday I link here with Sue and Leanne for Midlife Share The Love.

Thursdays my link up to follow is Lovin Life with Leanne here.

And on Fridays here with Alicia for Open Slather.

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Two Years Ago: Before My Cancer Was Diagnosed. Pt 1. 20/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 1. 20/2019.

In this series of posts relating to my head and neck cancer, specifically (quoting from pathology reports after my 6 July 2017 surgery):

hybrid squamous cell carcinoma (in my upper gums and under my top lip) showing features of both verrucous squamous cell carcinoma and conventional squamous cell carcinoma

I am writing about the times of leading up to the day I was told cancer was in my mouth. I think I thought I had cancer of some kind for a year or more earlier. But, to the medical and dental profession’s credit, my cancer is both rare (head and neck cancer is around 3% of the population) and even rarer in someone like me with no risk factors.

There is another BIG reason I am writing this. I need to feel I can say now what I could not before ….because I did not know what was wrong! I thought it was my emotional health letting me down. Again. I did so much to help myself. Therapy, medication, being outside, doing volunteer work, having some hobbies, and more. NOTHING gave me an answer for what was changing in me and I was a nervous nelly anyway …but deep down, cancer was on my mind.

Below are photos of just some of the examples I did to help me emotionally. Mind you, they have indeed helped me still now that I know it was cancer but back then, I was following instructions!

To blog about this is helpful for me

I am re-living a time of memories of the ‘unknown’ and also one in which I was doing all I could in an incredibly challenging time in my life: selling up in Sydney, moving to the Central coast , getting sad about leaving our family and finishing my worklife after decades in education. Two years on, I KNOW the sometimes good that has come from my cancer diagnosis and I acknowledge that . It has also been, and continues to be as hard path to walk but I am doing the best I can.

If my post are helpful to others, then I am also glad to write them.

From my memory and using my word journal.

In preparation for my teeth to be deep cleaned by AB after consensus from the specialist gum dentist was same as 3 other dentists (2014-2017) & a biopsy on a white patch under top lip near gum: candida.
Fungalin did not help. Mouth rinses with nilstat did not help. Already gums were over growing top teeth (bridge at front) & behind on soft palate was constantly red & irritated for at least a year.
Instuctions to “clean better” … under an impossible to reach back of a bridge just served to make ME feel at fault for my sore mouth!

2nd March 2017

My dentist is AB, and I had been seeing me for around a year & knew my dental history. I was a fearful person but always had 6 month check ups & had gone through extractions, fillings & root canals. After I did not pursue allergy-test for nickel (component in the bridge) as AB researched the composition of 2011 installed bridge done in Sydney by HS, I was coming back to him for a ‘deep clean’ on 2nd March 2017.

“I took immodium as I was wary of IBS coming on my 30 minute drive from home to his surgery. I was so stressed about that & whether I could make it but I was also determined to see that I did.

Having done some practice “exposure” therapy in small bits, I knew I had to have this “deep clean” of my upper teeth & bridge as the pain, gum growth & irritation had been there too long.

For most of my adult life I had felt “the teeth troubles I had were my fault” as I had a sweet tooth. There was a part of me that felt guilty about my mouth!

So, I set off on the road the most physically anxious I’ve been but in control of the drive in my car. I had one loo stop then arrived at the dentist. I was so stressed that when I finally saw AB & his dental nurse I broke down. Through my tears I said how worried I’d been & how judged I’d always felt about teeth & I was grateful they were helping me.

They were very kind & reassuring & I popped in my ear buds & was ready to listen to my favourite story teller, William McInnes. His voice is like a balm for me especially when telling the tales from his life as a kid.

It took so many needles to numb the area at the top where I’d had gum over growth & soreness for almost a year now . AB was to deep clean & get right into the top area where my bridge sat containing my front teeth.

As I didn’t quite know what to expect & what the outcome would be I was naturally tense. However to my credit I stayed & got it done only asking how much longer (10 mins) & telling him when it still hurt (more needles required)

William McInnes voice helped distract me from the noises of water, sucker & instruments as I visualised as much of that as I could. From time to time I had to rinse out & the blood & water that were going down the drain shocked me.
I felt quite shaky when it was done & it took more than 90 minutes I believe.

The ‘good’ news is AB believes all irritation is due to left over cement from when it was put in & debris accumulated in spaces under the bridge.
I have candida & need funglin for a while. I could come back in 3 weeks for check up if I like & he hopes all will improve over time.

They were so lovely & kind even in their front office. I was touched.
It was a trauma in a way because I had to beat 2 things/ worry re IBS & treatment & outcome.

So… I did well considering how much it took out of me to get there!

Boy that was a huge exposure therapy success.

Quiet arvo at home getting over it all
then wanted to see the sky over beach as wet weather is coming.

Spent an hour taking it in & pics too
Soup for dinner & mouth actually feels bit better already Have a special floss to use.”

Making the best effort to ‘be’ what I did not feel. Two months before I knew I had cancer. March 2017.

Stand by for what happened next.

Denyse.

Joining with Alicia who is hosting Open Slather on Fridays now! Yay for being back…and a different day. Here is the link.

 

 

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Changing Me. 19/2019.

Changing Me. 19/2019

Changing me is I now realise ON-GOING!

It has been many years as I have mentioned in previous posts of living overweight and obese that has given me a skewed view of my image. My most recent post is here.

I am doing what I can now, to approach my thinking with:

  • kindness
  • self-care
  • words of encouragement

and seeing that thoughts are not always true.

I already use the Calm app for meditation each day, and often in taking a time-out will be mindful in whichever are my circumstances as I learn to be present and here….in the now.

Eating mindfully (and planning to eat) is helping me in these ways:

  • I do not follow those rules of ‘only concentrating on one food and mouthful at a time’ mindfully in eating.
  • I do now examine and observe my inner feelings (physical and emotionally) about the why and when of eating.
  • I am getting so much better at this!
  • I am also recording what I eat via a free app and it is Australian foods-based and gives me an idea of how well I am doing.
  • As a no-diet person, this feels good to have some control but also to eat within the generous range I have allowed myself.
  • I am using my fitbit to slowly up my steps each week by 500 steps  from a base of 6000.

On Tuesday 19 February 2019 I had my 3 month cancer check, and my Professor Jonathan Clark was delighted to see no reason for further surgery (yay for now) and when I mentioned my weight gain since ‘teeth’ he said “that’s good.” Oh, he means that is healthy and I am doing well! Of course now I get it…but as I chatted with his clinical nurse consultant who is just the best for me, she and I agreed that moving more is a good idea!!

 

On 23 February 2019 I posted this image and the words on Instagram.

One Year On.

As a person who was overweight to obese for decades, losing weight pre-cancer diagnosis & post cancer surgeries has been a mental issue.

I realise to others I look well, healthier and ok now.

I acknowledge I was 5kg+ lighter a year ago & pretty darned miserable at times because of eating restrictions due to 4 cancer surgeries & reconstruction inside my mouth.

I do think I did the best I could at the time to nourish myself but acknowledge how much I missed:

*chewing

*crunching

*biting

*savouring

FOOD from a variety of offerings! My shopping for over 14 months took me away from foods I missed biting, chewing, crunching & savouring.

From 21 Aug 2018 this changed. My upper prosthesis was fitted. It was novel to try the foods I’d missed: cheese on a cracker took minutes to eat. Then over time as my mouth & my brain handled the different foods better it was/is great.

Then, about a month or so ago the creeping up of my weight on the scales (once a month weigh in- years of measuring my worth via the scales is a horrid memory) was noted & I “have” to admit I knew what to do IF I still wanted to:

*like wearing my new clothes

*feel comfortable in my body

*enjoy all aspects & variations of foods I could now choose from

It was time to choose a better balance between foods that nourish & are enjoyable & to increase my movement each day.

This mindful eating plan I’ve made up is working for me.

I am now understanding the WHY of how I used food to deal with emotions & that it does not work like that MAKES so much sense!

Keeping myself active by changing my approach to movement. Upping the steps weekly by 500 a day,  starting at 6000 a day.

Most of all I want to add is how grateful I am to be well after nearly 2 years of oral cancer & that I can continue to learn best how to care for myself emotionally & physically!

Changing the voice in my head…. the inner critic…to low volume or mute whenever she begins to shout!

So have you ever taken steps to change you?

Denyse.

Joining with Min for Zen Tips Tuesday here.

Finding a place with Sue and Leanne here in MidLife Share The Love on Wednesday

and, of course, Lovin’ Life with Leanne here each Thursday.

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Eating With No Teeth*- Head & Neck Cancer. 17/2019.

Eating With No Teeth* – Head & Neck Cancer. 17/2019.

Update on Being a Head & Neck Cancer Patient. 

Oh I “did” have 8 teeth*…in my lower jaw and they remain. Yay for “some” teeth.

In the past year I know how far I have come as far as eating is concerned since my Head and Neck Cancer diagnosis in May 2017. I have been delighted to have an upper prosthesis of teeth now screwed into my abutments in my jaw. They were attached on 21 August 2018.

The Before and After of “Teeth Day” 21 Aug

OH HAPPY day….it really was but I had many eating lessons to come and I still do. More on that in a future post.

Day 1 post surgery to around Day 8.

Back to those months when I was post-first surgery. I recall being fearful of what it would be like not to eat but with a fluid drip and then a gradually introduced naso-gastric feeding tube my body was cared for. My mind did accept what it was until around Day 7 post-surgery when I recall feeling hangry. You know: angry because of hunger. So, when I was given the chance to see if my mouth (and brain!) remembered how to sip water and my throat allowed it to swallow…remember all of the inside of my mouth had been affected in some or many ways but my reconstructive surgery…it was heaven!

This:

Day 9 and Day 10. Discharge on Day 10.

This:

First meal in hospital. Then next 3 times I did not enjoy it much.

Early days at home. First Weeks.

I have IBS and with an empty gut receiving food for the first time in a long time, as well as the prescription of a far too strong for me anti-biotic on the morning I left hospital as a “your drain in your leg looks infected” ….my gut (and I) were just not happy in that first 10 days home even though I was starving. Poor husband did his best to please, and I also tried to be helpful but it really was a challenging time.

When my GP unravelled the cause of the massive diarrhoea episodes I had, he told me to forget any (hospital dietitian suggestions of ) liquid meal replacements, protein additives and eat what I could and felt like. The relief was amazing and coming off the giant dose of anti-biotics helped as the leg looked fine. The toast in these pics really wasn’t consumed but I liked ‘tasting what was on it. Avocado and soup were good friends, and also peanut butter eaten off the spoon. Jelly and icecream have never been a favourite but they provided so much mouth comfort with their smooth coolness.

The next weeks turned into months.

By the time the second week at home was over, despite my sore leg, I was able to do some meal prep. It frustrated me that I depended on my husband’s kindness and labour as I wanted to contribute. Eventually I worked out how I could have some say and also make some meals that would work for me. We mostly ate separate meals anyway because of his health. I also had many types of soup: homemade vegetable soup, pumpkin soup & tomato soup. For someone who was never a cereal girl at breakfast, weetbix and milk were/are my go-to foods!

Why this post about eating as a Head and Neck cancer patient?

I have written about my management of eating in two posts.

Part one is here, part two here.

Why I decided to do this more detailed one is for any  newly-diagnosed head and neck cancer patients who come here to read and view. Sometimes it is the head and neck cancer patient’s carer who needs some ideas. It can be very overwhelming and confronting when something as normal as eating & drinking (let alone speaking and swallowing) is changed dramatically via a cancer diagnosis.

I was fortunate in many ways. I had a limited time with only a naso-gastric tube before returning to eating and drinking as well as I could.

I know some people have long-term eating and drinking challenges following different Head and Neck cancers and procedures.

My health is good. I am looking to the 2 years marking the first cancer surgery in July 2017. What I know is that I may have to modify my eating again over time if more surgery is prescribed inside my mouth to enlarge the space between the lip and ‘teeth’ on upper prosthesis.

How To Seek More Information On-Line.

In my case, the words and written information from my Chris O’Brien Lifehouse dietitian helped me. I learned about the important of protein and fat in a post surgery diet. I also learned to value-add and I am grateful for that. For information on Chris O’Brien Lifehouse, go here.

Each head and neck cancer patient needs to be guided by their professional team.

The site and organisation called Beyond Five has a comprehensive page of information and this takes you to pages on nutrition with links here.

Beyond Five is the organisation I am working for as an Ambassador in 2019 to raise awareness of Head & Neck Cancer.

The stories of others with Head & Neck cancers are shared for here all to read:

 

This is a link to finding avenues of supportive care on the Beyond Five website.

There are support groups to help you as well. Here is the link, again from Beyond Five, to those in Australia and New Zealand. Correct at the time of posting.

Recently it was World Cancer Day and I submitted my story which was published here.

I AM a head & neck cancer patient

I WILL share for others to be aware

 

This post is going live on the morning I will be driving 2 hours to Chris O’Brien Lifehouse, donating some craft supplies to their Arterie program, having the first meeting with Beyond Five for 2019 and then visiting my Head & Neck surgeon, Professor Jonathan Clark and Clinical Nurse Consultant & Surgical Assistant Sr Cate Froggatt. After my cancer check, I will be better informed about ‘what’s next’ and then drive myself back home!

  • UPDATE: the meeting went well and provided much for me to discover as I move into my role as Ambassador to Beyond Five, and then my cancer check went well too. My professional team told me the inside of my mouth looked better when they last saw me early January and no surgery is required (I always add, at this stage…as my journey has had some detours!) and I will be back for a 3 month cancer check in mid May. That will be 2 years since diagnosis!

Wishing you well, from me. a head and neck cancer patient, to patients, carers, family and friends.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love link up on Wednesday

On Thursday linking up with Leanne for Lovin’ Life here.

 

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The Big C and Me. 15/2019.

The Big C and Me. 15/2019.

It’s time to share more about me and the Big C.

Yes, it’s about C for…..

CONFIDENCE!

(ha! not the other big C for cancer)

I think I give an outward show of being confident. It is not really a fake it till I make it confidence either.

It is about self-confidence in selected settings.

  • I am confident about my school life and teaching days and enjoy sharing the stories from then.
  • I love this part of me that can share now. I know there were days in education that were not always great (yes, my emotional health took a beating in 2002) but I have grown so much as a person and learner since then.

 

  • I am getting more confident of how I am managing my self-care in regards to less anxiety that plagued me for the years of my transition into retirement.
  • What good news that is! It was horrible for me with IBS thrown into the mix and I have done so well taking on board exposure therapy and a small medication routine.

 

  • I am less than confident in my belief about how well I am going in terms of my mental outlook since my cancer diagnosis and subsequent treatments and surgeries.
  • What is the evidence each day? None, really. It just happens sometimes.

 

  • I remain under-confident about my changed appearance a.k.a. my body’s change from very overweight to ‘almost normal weight’ and then back to a slightly ‘overweight’ status.
  • Am I taking steps to understand this huge shift and learning as I go? Yes. Every day.

 

  • I am still not as confident as I think I need to be to take on a continuing role in educating others about Head and Neck cancer because I am sensing judgment of others. I do know that I call upon courage to help me through even I have doubts.
  • Do I have evidence? Not really.

WHY?

I am who I am.

I am the product of a childhood and teen years spent in a dominant paternal household. I was told what to do. I may not always have done it but the memory of “other people’s words” being my measure for self remain.

I am able to give myself a ‘good talking to’ at times and can turn this matter of lack of self-confidence around.

But it takes energy and time AND motivation. I do not always have these on hand together and so there are days when my lack of self-confidence AND worth impact me more.

I am learning more in terms of self-compassion and how each of us is connected via shared humanity.

AM I FOOLING ANYONE?

Possibly but what of it?

  • I am on Instagram each day keeping myself accountable for dressing with purpose and going out somewhere for coffee.
  • This does help me ramp up some of my confidence in just doing so. I am not reliant on the comments as much any more because I know the effort I put in makes the outcome worth it.
  • But then when I have kind followers write comments of “congratulations, kindness and cheering me on” I do appreciate this a lot but also that inner critic rises up and adds her voice “would they say that if they really knew me?”
  • Lies. I do not tell them as far as I am aware but it seems maybe I am believing them from this inner critic. Who? Moi?

WHAT NOW?

Onward.

I know that putting these words here has helped me see that it’s my faulty thinking that has been affecting my self-confidence.

OK! How to change that?

  • Already I have in some ways as I now recognise this inner critic voice and her role.

 

  • My actions, my words and my inner life help me remember MUCH more about the confidence I like to have and know I can bring more to the fore.

 

  • Each time I dress and go out for coffee, I am embedding self-confidence.

 

  • My daily journal keeping can continue to be a ‘write it all down’ place and then review for evidence of this confidence tracking upwards not the downwards the inner critic can believe.

 

  • My on-line interactions with people from my various communities in education, blogging and head and neck cancer are ways in which I grow my self-confidence and also give back to others where I can and it is asked for.

 

  • Seeing myself as others do and may. It helps to believe that I am both good and doing good. This is something I have struggled with all of my life and want it to change. I can do this. I will remind myself more.

 

  • Maintaining practices of:

 

  • being in nature,
  • time-outs with my art journal,
  • chats with my husband, meditation each night,
  • helping my physical body to relax,
  • exercising within my limitations,
  • planning to eat well and doing the same without any deprivation,
  • cancer checks and better understanding of the fact that cancer actually never leaves but might take a back seat in my life,
  • taking time to make contact with family and friends,
  • exploring the local area’s beauty,
  • browsing at the shops,
  • reading,
  • keeping to a timetable of sorts each day for balance in my life.

Already I feel better!

Thanks for reading.

Do you have an issue with the Big C?

 

Denyse.

Joining with my blogging friends here:

Min on Tuesdays here for #ZenTipsTuesday

Sue & Leanne on Wednesdays  here for #MidlifeShareTheLove

Leanne & Crew on Thursdays  here for #LovinLife

 

 

 

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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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