Thursday 11th August 2022

Being Me: The Month That Was July 2022. 49/2022.

Being Me: The Month That Was July 2022. 49/2022.

It’s my time to share how my Word of The Year is working out for me via the  post to this link up run by Deb, Sue,  Donna and  Jo too.

Being Me: July 2022.

I have already shared here that we are planning a move back ‘home’ to Sydney in early 2023 and plans for that are taking off in many ways!

I have recently celebrated my 5 years since my first major surgery removing cancer from my upper mouth and wrote about it here.

And, July is one big important month for head and neck cancer and that too has been shared here.

From my World Head and Neck Cancer Day update: a photo marking my 6th #WHNCD!

So, that’s it.

Being Me

….oh wait! There IS more to keeping me “being” each day!

Daily Calm mornings and a mediation each evening is non-negotiable!

Self Compassion via the program I began in January is my evening way of remembering gratitude and more

As is daily reflections, diary entries in my Day One on-line journal

And it is SO good for me to reflect. In fact, what I notice these days is that I do much less rumination and I am also far better at bringing myself back from too much future thinking.

I have become a more heart (and gut) centred human over the past 6 months…

Rain.

So much. It directly affected us slightly here. We did not go out unless absolutely having to. Roads have been incredibly damaged via 4 major flood/rain events here in N.S.W. so I learned to BE ME without going out…and I had plenty of practice from last year’s covid lockdown.

I did get here but the same day, the road to it was flooded. No access to the sand either.

Getting to my psychologist where I wrapped up my sessions. I hadn’t had a need to see her other than two visits and it was good to say thank you to her and for my ways of self-managing to be affirmed. I actually helped her with something too. I liked that.

Sun’s out. Wyong River, still in flood, after seeing the psychologist.

Morning Tea Treats.

As a long time emotional eater…or covering up emotions I couldn’t express (anger was not permitted…) I often chose to calm with food. And that was OK too but since head and neck cancer (and feeling OK these days) I am limited in quantities and types of food.

How to ‘be me’ without getting old stories from diet land and parents’ words??

Do IT!

When I go out now a few times a week I have an inexpensive (relatively) morning tea of a strong (very) small latte & half an iced donut. The top part of course. I also use my alone time BEING me to write in my note book and people watch. It’s a lovely way to help me restore my soul. And I eat with difficulty so it’s also me not being in company!!

Appreciating Where We Live Now.

Since deciding to become city-dwellers again, I have a new way of looking at, and experiencing where we live now. Making memories has become more important to me…and I like that.

Health Update.

Still having my surgery in August, and I have some blood tests coming up for that and a pre admission check the week before over the phone. I know I will find it a challenge being in hospital recovering from major surgery over a weekend…surgery is Thursday…but am preparing myself psychologically….and with ipad, iphone, drawing items and so on. And as it is a long recovery at home…doing a bit of cooking for the freezer right now.

As I come out of the head and  neck cancer surveillance regime, once October comes, I will still be checked each 6 months or so at Westmead by my prosthodontist. Good news is next year, living in western Sydney, the travel time will be much less.

B and I are protected with all the possible vaccines and wearing masks anywhere indoors, out of the house. Almost all of our family (living in Sydney) have had covid. We are fingers crossed to miss it.

We did enjoy a special morning tea out recently and that’s the limit for us!

 

Some Snaps Of July Life….

Saw Dad. He Was In Good Form.

 

My Index Cards. Last time for this.

 

Remember !!

 

Where To Next?

  • we are downsizing in 2023 and now plan to move to an apartment somewhere (not in a retirement village) in the Hills District of Sydney.
  • we are doing a LOT of culling, de-cluttering and more to enable this to happen…and this is a good thing
  • much has been donated already to local charities
  • a charity is coming to collect much of our home office furniture
  • our son is taking quite a bit for his place
  • the rocking horse is staying in the family – at my daughter’s
  • we’ve sent packages of B’s texts to friends whose work is in mental health
  • and we are very grateful for Facebook marketplace: I had never used it, and whilst we sold items (a large garden storage box, a bar fridge) for very little, they have gone to people who needed them
  • my husband is no longer going to need to use a workshop so there will be some selling and donations happening there
  • we are checking out the internet rentals (ok, mostly me) to try to see what would work for us…and enjoying the process
  • we feel very comfortable with the decisions made to date as we are ageing physically and need to take that into account

Watch this space?!

Not really. Until we are into the new year we cannot look at anything seriously but we will continue to hone what will be kept and what will go. It is a challenge …we have already done so much (we thought) but no, not as much as we might have hoped when I ask B “so, you put this stuff in this box at Glenwood??” Um, dear reader, not even opened after 8 years and full of all stuff that could have been thrown out…and now has been….

A little find for the good. Found a DVD where some of our very early years of marriage captured on Super 8  had been copied. I was able to get it onto this computer and then do some screen shots. So cool. And great memories.

January 1972 at my parents’ house with now (almost) 51 yo daughter…

We were off to a christening..not hers, proud Dad holding his daughter.

Bye For Now.

I have to say, with the blog posts about head and neck cancer and keeping up with some other aspects of my social media accounts, I am needing yo  give myself a month or more off.

On 11 August I will be having surgery and as I will be gearing up for that beforehand and then recovering for up to 6 weeks, I will take time out.

I know you will all understand.

This is good self care!

Thinking of you all, and wishing you well over the coming weeks.

I will be keeping up with the blog link up here today and checking out others’ posts, of course!

Denyse.

 

 

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

World Head & Neck Cancer Day 27.7.2022. 48/2022.

This blog post, like all posts related to Head and Neck Cancer, may be found here on my blog’s header page.

There is a link here to Head and Neck Cancer Australia which is also accessed via here Health Direct Australia.

I am dedicating this post to Hayley Eldridge who died on the weekend. The link to her story on HANCA is here.

And this is my comment on the loving, sad post made by her husband: “Hayley was an amazing woman and I am so saddened today too…I remember the photos from the day when Head and Neck Cancer Australia met with Dr Allen & Hayley was able to be such a great advocate for #HNC …sending love to Joel, her parents and her family & friends. We only ever had IG convos but she exuded love and compassion in all of our connections. Vale Hayley”

Head and Neck Cancer is NOT one with great outcomes for all. I am so sorry to say.

 

 

World Head & Neck Cancer Day 27.7.2022. 48/2022.

How World Head & Neck Cancer Day Began: 2015.

Thank you Michael Douglas, actor, and head and neck cancer patient for sharing your story, and for the announcement on 27.7.2015 that this day would become: World Head and Neck Cancer Day around the world. The ribbon colours for head and neck cancer are maroon/burgundy and cream

https://ascopost.com/issues/august-15-2014/michael-douglas-shares-his-experience-with-stage-iv-oropharyngeal-cancer/

One of the ways my case was very similar to that of thousands of other cancer patients is that I was initially misdiagnosed. Not once, not twice, but three times. To you all, that is probably a familiar story. It all started out pretty innocently with a soreness of my gum behind my last molar. And being pretty diligent about my health, I went to see my general practitioner, who thought I had an infection and so was prescribing antibiotics, which, being a good patient, I took. And then I saw an ear, nose, and throat specialist, and then I saw a periodontist. But after a number of months when this supposed infection hadn’t gone away despite multiple rounds of treatment, I was pretty certain that this wasn’t simply just a sore gum.

Advancing Knowledge About Head and Neck Cancer

And through your tireless efforts that spans nations, continents, cultures, and languages, and the courage you display in confronting something seemingly so implacable as cancer, you embody the essential values of cooperation, education, and the sharing of knowledge. The proposal made by the International Federation of Head and Neck Oncologic Societies to proclaim today, July 27, as the world head and neck cancer day is a right move to share and advance knowledge to the world by organizing educational activities each year on this day. I wholeheartedly support this proclamation. This is the road on which I believe progress lies and this, of course, is why you all are here today.

 

 

What I’ve done for World Head and Neck Cancer Day over the years.

I had not heard of this type of cancer until I was diagnosed in May 2017, and then had my first BIG surgery on July 6, 2017.

2017

I was 3 weeks post-op when my husband drove me  back to Chris O’Brien Lifehouse for 3 week check check, and to hear the results of my biopsies of bone and tissue. We had quite a rushed consultation with my A/Prof Ebrahimi and HNC Nurse where I was given this news. I admit, it was good to know but also I was still very much in recovery mode. One piece of advice from that day was to try to eat red meat as mince and my recipes contained a lot of that from then. Eating with a very swollen newly constructed upper mouth and only 8 teeth below (but a strong tongue) was hard, but doable.

2018

Having my story published by my local Federal MP Emma McBride on her facebook page, after we invited her to have morning tea at our house, I was ‘found’ by the local Central Coast Head and Neck Cancer Group’s Nurse, Lisa, who invited me to the Gosford Hospital Central Coast Cancer Centre for their inaugural Soup for the Soul event. I got to meet some head and neck cancer patients for the first time, and would later join their group for meetings.

2019

By the time the next WHNCD came around, I had become an Ambassador for then Beyond Five, and supported the organisation via social media, blogging and continued in-person attendance at the local CC HNC group. We did not know it of course, but that year would be the last we could host a Soup for the Soul Event. The day was also recounted in a local paper from a story by the Chair and in this way more news was shared about Head and Neck Cancer.

 

2020
The year none of us can forget, as once Covid 19 hit, some much changed. Very much. No face to face meetings, no events nor any kinds of catch ups which could have brought illness from Covid to any of us. At that stage, there was no vaccine. Head and Neck Cancer Australia used the week of WHNCD to share videos made earlier, including the one I took part in about nutrition, and they also ran some on-line events. Soup for the Soul went virtual or in at home groups. I appeared like this to be part of an audience in a webinar, to give support on WHNCD 2020 but my face shows I was still in recovery mode from surgery (not cancer) the week before.

2021

No to any kind of in-person events for fundraising. I had, much earlier in the year before much of NSW went into 100+ days of lockdown been able to share the HNC story with the local Senator, Deborah O’Neill.  We had high hopes, over 3 occasions that Head and Neck Cancer Australia (name change from Beyond Five), would be taking a delegation to Canberra for a Parliamentary Breakfast. Sadly this did not happen but via many emails, zoom meetings and an occasional one to one meeting some in roads were made into acquiring a grant to help HANCA’s costs in sharing awareness.

I was personally disappointed that a much planned and hoped for “live event” at my local cafe had to be cancelled. The owners were too. I made a virtual soup for the soul event which got some kind donations but again, it just isn’t the same. There had only been a few in-person local group meetings too.

 

2022

I celebrate/commemorate/appreciate my full recovery from head and neck cancer surgeries and treatments and this year it’s been 5 years. A full-on FIVE years. I chose to not organise any event: virtual or in real life, this year. I am getting older, and with some other non-cancer related surgery coming up soon, I am self-caring more.

I do, of course, share the news in the lead up to World Head and Neck Cancer Day. My Dad made his annual donation to Head and Neck Cancer Australia, and I added a small one of $25 to cover the cost of one package to be sent to a patient/family/health professional.

I do enjoy my soup more these days…maybe the cold biting winter we have had encourages this, and I am making more as my Dad enjoys it. Having found my old fave Rosella Tomato Soup back on the shelves, I will raise a cup on Wednesday!

 

And on:

WORLD

HEAD

&

NECK

CANCER

DAY

to all who know this disease personally, who know of others and who have studied  to be able to help us patients with our various types of HNC, I am thinking of you and wishing you well.

Denyse.

I am linking this post for Weekend Coffee Share and for readers to know the inaugural event happened in North America on 27.7.2015.

Denyse.

Joining in with Natalie for Weekend Coffee Share over the weekend. (Publishing before then, on Wednesday 27 July 2022.)

Thank you Natalie.

https://natalietheexplorer.home.blog/

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

What’s On My Bookshelf… The Tara Brach Edition. July. 47/2022.

What’s On My Bookshelf… The Tara Brach Edition. July. 47/2022.

Here I am back for the July post for What’s On Your Bookshelf, and I am devoting the post to one author, Tara Brach.  See further on…meanwhile:

 “What’s On Your Bookshelf?”

Thanks to Jo, Deb, Sue and Donna who host this.

 

More than 6 years ago, as I was struggling to manage both my emotional health and my transitions from the life of “very busy”,  I knew I had to get more help to both understand what was going on inside me (thank you Dr Psychologist, GP and counsellor trained husband) and to DO the WORK of getting to a better place in terms of becoming more mindful, more accepting of ‘what is’, and learning to be self-compassionate.

This does not happen overnight of course, nor with a course  series of 6 weeks or seeing a therapist because it HAS to become a part of the inner self. By using strategies, techniques and kindness in the pursuit of a better inner heart-felt life.

Whilst I am so much better at ‘being’ these days, it is definitely a work-in-progress and today I wanted to share, for What’s On My Bookshelf, just ONE author and four of her books.

Here’s a little about Tara Brach: from her website, and each of her books (which I have and on CD/Audible) too are listed below.

Notes under each title are from the Author’s Website.

https://www.tarabrach.com/rain/

https://www.tarabrach.com/guided-meditations/

Radical Acceptance (2003)

Embracing Your Life With the Heart of a Buddha

One of the deepest expressions of suffering is self-aversion, part of what Tara Brach calls the “the trance of unworthiness.” Drawing on the wisdom of Buddhist teachings, illustrative stories and the transformative power of meditation, Tara guides us in healing the shame and fear that bind our hearts. When we stop being at war with ourselves, we are free to live fully every precious moment of our lives.

True Refuge (2013)

Finding Peace & Freedom in Your Own Awakened Heart

Based on a fresh interpretation of the three classic Buddhist gateways to freedom—truth, love, and awareness—True Refuge shows us the way not just to heal our suffering, but also to cultivate our capacity for genuine happiness. Through spiritual teachings, guided meditations, and inspirational stories, Tara invites us to connect more deeply with our own inner life, one another, and the world around us.

Radical Compassion (2019)

Learning to Love Yourself and Your World with the Practice of RAIN

In this heartfelt and deeply practical book, Tara Brach offers a lifeline for challenging times. Each step in the RAIN meditation practice (Recognise, Allow, Investigate, Nurture) is brought to life by memorable stories shared by Tara and her students as they deal with difficult emotions and limiting beliefs, and discover step-by-step the sources of love, forgiveness, compassion, and deep wisdom alive within all of us.

Trusting the Gold. (2021)

A beautifully illustrated gift book to help you uncover and trust the innate goodness in yourself and others. In Trusting the Gold, Tara Brach draws from more than four decades of experience as a meditation teacher and psychologist to share her most valuable practices for reconnecting with the beauty of our humanity―from timeless Buddhist wisdom to techniques adapted to the specific challenges of our modern age.

A beautifully illustrated gift book to help you uncover and trust the innate goodness in yourself and others. In Trusting the Gold, Tara Brach draws from more than four decades of experience as a meditation teacher and psychologist to share her most valuable practices for reconnecting with the beauty of our humanity―from timeless Buddhist wisdom to techniques adapted to the specific challenges of our modern age.

Why Tara Brach For Me?

I found her voice to be a comforting one as I followed her for many months via weekly meditations which she offered free from her website.

She was someone who made a great deal of sense and being of a similar age too, I respected her work and study and her sense of ‘keeping it real’.

I used this method (meditation) of connecting after finding her first two books and starting to get the idea of what it was to be both mindful and a realist.

Tara is in essence a story teller and she is a very engaging one for me.

She admits her faults, foibles and frailties as it is through her having owned up to these,  she was drawn to the Buddhist beliefs which softened her self-hate and her self-admonishment.

Her words, in my ears, at times of waking early during very anxious times in 2016 into 2017 (before I knew had oral cancer) really encouraged me to be self compassionate too.

Now, some years on, I have gone back to Tara via her newer books, and the fact that she is also now a regular on the Calm app. I cannot speak too highly of her lessons for me and of her words and work.

Even though I was doing as these photos show, I was very hard on myself. I felt I needed to try better to get more mindful.

When I really, really listened and was ready to understand, I knew that I had to accept the feelings that were tough, and not to push them away. I continue to remind myself often now about this and I am waaaay further down the track of learning to accept ‘what is’ and not trying to ‘change’ what is not in my capacity to do.

She is also a colleague of and friend to others I follow and I have added this link here if you are interested in finding out more about their meditation course. I loved it and still have access to it. I think some of it can be trialled for free.

Create a Life-Changing Meditation Practice in Less Than 15 Minutes a Day!

From Tara Brach and Jack Kornfield

A 40-day online training in mindfulness meditation with two of the world’s most respected meditation teachers, Tara Brach and Jack Kornfield.

The course includes four modules:

  • Mindful Basics – 13 days
  • Emotional Intelligence – 8 days
  • Resilience, Healing & Inner Freedom – 8 days
  • Mindful Living – 11 days

 

To conclude, I wanted to share more about the practice of R.A.I.N. but not the variety we have had our share of recently.

Tara Brach:

Recognise

Allow

Investigate

Nurture

Image: Calm App.

I hope you have enjoyed learning something about this favourite spiritual teacher of mine, Tara Brach, and that you may be interested in learning more if this is a path you are thinking about.

Take care,

Denyse.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Head and Neck Cancer Recovery is SLOW. #WHNCD2022. 46/2022.

Head and Neck Cancer Recovery is SLOW. #WHNCD2022. 46/2022.

In the lead up to World Head and Neck Cancer Day 2022, 27 July 2022, I will continue to post about my head and neck cancer experience to continue to raise awareness:

I am also an Ambassador for Head and Neck Cancer Australia, sharing my experience and knowledge of my version of #HNC for others, via in person talks, on-line chats, zoom meetings and of course, blog posts…and good old social media: twitter, instagram and facebook.

Before the name change to Head and Neck Cancer Australia, the only charity in Australia to be supportive of those with head and neck cancer,  was called Beyond Five. Here I am doing my ‘thing’ at the last live event back in 2020 before Covid closed all such things down for the next two years.

Why is Recovery SLOW from head and neck cancer?

Treatments to removed a person’s cancer from an area of the head: inside the mouth, under the tongue, related organs that connect to the head area including cheeks, palate, jaw, and more can include:

  • chemotherapy
  • radiotherapy
  • surgery

Each person’s cancer may have a different level of seriousness (the grade) and the position of the tumour or area where cancer is detected.

Some people I know have had all three treatments, others the top two but not surgery.

From those I know who have had these, it does take many months to return to some semblance of regular life but life is always changed by head and neck cancer. Appearance is one but so is function and this may be no saliva in the mouth to aid speaking, eating, swallowing etc and changes in taste, hearing and so on as aftereffects of the brutal treatments which are designed to kill the cancer cells. 

There is always some collateral damage.

Mine was all surgery.

The speed (funny word to use) of recovery from this cancer is determined by the person’s basic health, the time of treatment(s) being given, allowing for the body to do its healing and for, as in my case, to see if tissue and bone taken from another part of the body is accepted in a new place within the body.

My SLOW recovery.

I am not by nature a patient person. However, in all these days, weeks, months and what stretched out to be over a YEAR, it was something I had to learn to change. I couldn’t fast forward my recovery nor could I rant about how much longer (I did on occasion, as it was a long and sometimes frustrating time)

In hospital five years ago, I had 3 days in ICU, then 7 in a private room. I got excited about the progress I was making when all of the observations made were going well.  The big one, was a doppler recording the beats (live blood flow)  where part of my leg was forming my upper palate & it needed to be GOOD news!  Yet with so much interference to my body (for the right reasons) it would be a LONG time before anything related to independence of sorts and some eating with variety happened.

Of course, I was somewhat immobile as my fibula and parts of my leg were taken to graft into my body, so I had bandages, dressings, and an adjustable boot. The care of this part of my body continued at home for 11 weeks post surgery.

 

Over 3 months….yes it was.

And then I still faced what we thought would be two more surgeries in my mouth to get ready for the upper prosthesis but as my mouth is small, and the reconstructed skin was tricky, it would require a 4th surgery and MORE time to go through more trips to Westmead and it was, in fact:

14 months!

 

That was a LONG wait but I did it!

And for the next 3+ years, I had cancer checks with my head and neck cancer surgeon, and many visits to the prosthodontist whose skills made my ‘smile’ and upper prosthesis.

It’s only now, July 2022, as I write, that I can acknowledge I am cancer free with gratitude. Head and Neck Australia’s congratulatory post was much appreciated:

Yet my recovery continues. My mouth will need regular monitoring as I have bone from my fibula which created a jaw, and flesh and skin from the right leg which helped me get a mouth which could function again. But it is not a natural mouth and it behaves differently.

I will cease my cancer checks in October 2022 but my prosthodontist will see me at least twice a year.

In fact, I had a call back recently because he noted some bone loss near one of the implants (the space where part of the upper prosthesis is screwed into the jaw) and he needed to removed the prosthesis to ascertain more closely how good the health was of my ‘gums’ and more. This involved a very long time in the chair, as he (and his wonderful nurse) unscrewed the upper prosthesis, removed it, did the inspection (deemed to be OK for now) and then replace the upper prosthesis.

I wanted photos to both educate me and those who read this because my mouth is not ‘so good’ to look at, and certainly not to talk with or manage any eating, without that special piece of detailed equipment…so here I am, with my ‘smile’ outside my mouth…

And to those who read this and may be concerned about some changing aspects to the head and neck areas, including a sore which does not heal, a lump that remains and might be sore or growing, or unexplained pain, check it out with your G.P. and or dentist.

And insist on further referrals if told ‘no that seems normal/OK’ because not ONE person who I know with a diagnosis of a head and neck cancer found this part simple or easy. Check out here too.

Persistence and insistence is key. Read what I did here. And that still took a year!

My Prosthodontist who has been at every one of my surgeries and his nurse. After 5 years we know each other well and for that I am grateful.

I am linking this post for Weekend Coffee Share and whilst this may not be standard weekend relaxation fare, it’s s story worth sharing. Thank you all.

Denyse.

Joining in with Natalie for Weekend Coffee Share over the weekend. (Publishing before then, on Thursday 14 July 2022.)

Thank you Natalie.

https://natalietheexplorer.home.blog/

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest