Tuesday 28th June 2022

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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WHNCDay, Beyond Five, Soup For The Soul & Emma McBride MP. 2018.62.

WHNCDayBeyond Five, Soup for the Soul & Emma McBride MP. 2018.62.

Let me start with this.

I was diagnosed with a head and neck cancer in May 2017.

I had no idea that a cancer could be in my mouth.

Many posts here have charted my journey and it has been ever so helpful for me to post, learn and help others too.

What is WHNC Day?

It is World Head and Neck Cancer Day and is on 27 July each year. Last year, on this date I attended my first post-surgical appointment at Chris O’Brien Lifehouse and there was nothing anywhere to indicate it WAS WHNC Day.

This year IS different. For me, and for more people who are coming on board to spread the word which is AWARENESS.

You see, as I was ignorant of mouth cancer, many who may eventually be diagnosed with a head and neck cancer (not brain cancer, it is a different group and speciality) and sometimes too late for life-saving treatment.

I’ve been wearing a ribbon from Beyond Five for the past weeks and having my photo taken to raise awareness. The ribbons are $3 each and available from Beyond Five (address is below)

Around the world there are organisations of professionals, patients and carers gearing up for this date with meetings, a conference is being held in Melbourne where I know my surgeon, Professor Jonathan Clark is attending along with my Specialist Prosthodontist, Dr Suhas Deshpande and an event, in Australia for the very first time called Soup for The Soul.

Beyond Five 

I first heard about Beyond Five in June 2017 as I was approaching my BIG (as I still call it, because it was!) surgery when A/Professor Ardalan Ebrahimi answered my long email very helpfully and suggested I check out Beyond Five as it was an organisation he and the Professor had started. At the stage I did glance at areas on-line but my mind was not able to take in much.

As I have moved well into recovery mode, my story was added to Beyond Five’s patient experiences in April 2018. As an educator AND blogger as well as head and neck cancer patient I became better acquainted with the organisation. Here is part of their mission.

Beyond Five is Australia’s First Head and Neck Charity supporting patients with head and neck cancer, as well as their families, carers and the healthcare professionals who care for them.

Their Story:

In 2014 a team of passionate people working within the field of head and neck cancer care had a common desire to provide access to information about head and neck cancer to people all over Australia.

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
  • voice box

Each type comes with its own causes, symptoms, characteristics, complexities and treatment options.

There was a real need to provide comprehensive information in one place that was easy-to-access.

We spent 24 months gathering the content with the input of:

  • surgeons
  • radiation oncologists
  • medical oncologists
  • nurses
  • speech pathologists
  • dietitians
  • dentists
  • plastic surgeons
  • psychologists
  • health literacy experts
  • patients
  • carers

We included information for all of the stages of the cancer care journey from diagnosis through treatment to life after cancer. This means that patients and carers can easily find the information they need at the right time.

Beyond Five launched in September 2016.

(side note: my diagnosis date, May 2017)

Why Beyond Five?

When we talk of curing cancer, we talk in terms of  five-year survival. However, in patients with head and neck cancer the effects of the cancer and their treatment stay with the patient forever. These effects may be seen as scars on the face that cannot be hidden by clothing or may be difficulties with speech and swallowing.

The name ‘Beyond Five’ refers to the long-term need of patients which they often need more beyond five years after diagnosis. Find Beyond Five here: 

Soup For The Soul.

The sotry above indicates that Beyond Five is a charity that is new to the scene to help patients with cancer. In fact, this year is only their 2nd year in full operation. So, the FIRST every fund-raiser is happening and it is called Soup For The Soul.

Why that name? It IS winter, so it is a great idea to have some soup with friends and ask for a donation towards Beyond Five and their messages needing to get out to more. Another, and even more important reason is the symbol of what soup means for people with head and neck cancer. It is often the life-line food of nourishment and care. I had a lot of soup last winter and more this winter even though I can get some less liquidy foods down now.

For the week 20 July to 27 July (WHNC Day) there are events and meals and gatherings planned around Australia. I am off to one at Gosford on 24 July with a head and neck support group. I am hosting a “virtual” event for my blogging, facebook and other friends and I have opened a fund-raising page here.

Please donate what you can afford. I suggest $5 as that’s a bowl or a cup of soup!

Here is the link to my page, where the donations are sent directly to Beyond Five after the organisation looking after the funds takes a certain amount for their costs. This varies according to the amount donated.

Emma McBride M.P.

Emma is our local Federal Member and I wrote to her asking if she would accept a fund-raising ribbon from Beyond Five from me. A very busy lady as you can imagine, I was surprised and delighted to receive a call from her office in Canberra to say Emma wanted to come to our place, if that was convenient, to find out more and to accept the ribbon. So on Monday 9 July we did have a very pleasant chat and took some photos which went on social media and I am told there may be something happening on 27 July to raise some awareness for head and neck cancer and some funds via Soup For the Soul. I am very grateful!

I know there was a lot to read and get through today but this post has been getting ready to be published in advance of World Head And Neck Cancer Day and I wanted to cover all the information.

Thank you for reading…and I hope, commenting!

Denyse.

Joining with Kylie on Tuesdays here

Joining with Sue and Leanne here on Wednesdays.

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My Head & Neck Cancer 1st Anniversary. Pt 1. 2018.44.

My Head & Neck Cancer 1st Anniversary. Pt 1. 2018.44.

Writing this post I feel a surge of gratitude for my cancer diagnosis.

Weird?

Well, for me, BEFORE I knew that there was a nasty cancer called Squamous Cell Carcinoma in my upper front gums, I was anxious, fearful and this had been building up for the 3 years since just before we left Sydney to come and live on the Central Coast. My life was reduced to managing a sense of fear any time I needed to leave the house. Whilst it was not quite crippling, because I have a very determined edge to my nature, it was not how I liked feeling. AT. ALL. Blog posts here and here tell more:

In early May 2017 after a series of medical and dental examinations, CT scans, X-rays, a biopsy for gums that were not only NOT healing after the teeth and bridge had been removed  but were growing ….the news came through about WHY. The posts about my cancer can be found here.

Words are few but pictures tell much of my story. Away we go. Oh, and I AM someone who takes lots of pics and am grateful to have this record.

Part One.

In the lead up to the first Anniversary of my diagnosis I had thought this post could be a ‘thank you’ one.

I did not realised until late March that I would need a 4th surgery. However, I accept that the mouth still needs more work ….and I am trying not to whinge too much about the fact I will be having the ‘mouthguard/stent’ in for much longer AND another skin graft….because whingeing is not cool. This post is going live AFTER my 4th surgery on 16 May 2018.

I have accepted that there is no real END time with cancer.

I will be having checks until mid 2022. Then, as with most head and neck cancer patients, there is more to come, such as management of my implants over time. See this wonderful Australian-based  support site: BeyondFive here.

So, no “thank you and farewell post” for Part Two. Just more gratitude and let me show you who those people are and why I am grateful!

Part Two is scheduled to go live on Tuesday 29 May 2018.

Denyse.

In many ways I hope, that as I am a teacher AND a learner, anyone who knows someone with Head and Neck Cancer might find my posts helpful. It is one of the reasons I blog: to share, to learn and to connect! My page above has my other posts relating to my cancer story.

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

On Thursday this post links with Leanne here.

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