Monday 25th March 2019

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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Learning To Deal With Uncertainty Via Cancer. 2018.28.

Learning to Deal With Uncertainty Via Cancer . 2018.28.

In the past four years I have been on such a long and hard learning experience.

Perhaps I am short-changing that time frame.

Possibly it has been since 2003 when I had to resign, for medical reasons, from my substantive role as a K-6 Principal.

However, in May 2004  I was deemed well enough to return to teaching duties only and that was fine by me because I actually missed schools!

In my working life in N.S.W. public schools from 1970 until 2010 I liked the certainty:

  • of the school day,
  • the rhythm of schools
  • and the fact that my work life was timetabled
  • and I could work knowing I had familiarity and knowledge.

I now modify the above by adding: no school day was ever the same and of course there were many uncertain times and experiences but they were all familiar and I understood them well.

In the years following my retirement from teaching in 2010 up to 2014 I decided that helping families learn more about transitioning to school would be good and set up a solo education consultancy. There was some certainty in this once I found a group of early childhood centres who were not only interested in my work, but would pay me a fee too. Win!

In 2013 I was fortunate to meet then Prime Minister Julia Gillard who thanked me for my work in education.

What changed for me and how did I HAVE to learn to deal with uncertainty?

Three major triggers during 2014 and into 2015.

  1. Deciding to sell our Sydney home of over 18 years, pay off the mortgage and other debts and move to rent a place on the Central Coast.
  2. Resign or down-grading my employment status in education: teaching at Uni, having my business and remaining as an observer for (then) NSW Teachers’ Institute.
  3. Leaving the families of our adult children and their children with whom we have loved and connected from 1996 to the present including daily child-care before they started school.

I have written about them before, but the memories of those times appear in my ‘on this day’ in Facebook and in ‘time hop’ so I see and recall them usually with a sickening thud to my gut. But then because it is NOW in 2018 and I am learning much more about how to manage uncertainty I am able to counter it!

Sign Above Where I Blog. B.Be Brave O.Optimistic L.Learning & Loving. D. Determined Denyse.

Where were we?

The rational and thinking brain does not  know why because it was logical back in 2014 and KNEW the decisions we were making to commence what felt like a proper retirement for us both were right. We needed to have no more debt. We wanted to live away from Sydney. We had been told my our family that childcare was no longer required.

The thing is, I found out in many hard ways that I had created a situation (or actually more than one) where my inner soul and feelings were in conflict with my brain choices. I spent all of 2015 trying to make sense of it and until a psychologist told me: Denyse, feelings take a lot longer to catch up with decisions and change, I felt I was doing it all wrong!

And in some ways I was.

I was ignorant of so much. I finally accepted the sadness and grief that enveloped me for that year. I actually thought things would improve for me when we moved house at the end of 2015 but it was short-lived. My brain was now on super alert setting and affected my decisions and my life. I tried medications (no, none helped) and meditation (a little bit helped) and walking and art too.

But it was not until I started learning more about the Buddhist way of living in the now, as it is all the certainty we know from teachers Pema Chodron, Jack Kornfield, Tara Brach, and Anne Lamott  more that I clicked:

OH. I cannot control anything really.

At all. I can control my responses.

A big gap was closing in my learning. My husband had been doing his level best to enlighten me but I was not ready. Or, I was obstinate and wanted proof!

So for all of 2016 I continued to ‘try’ to accept things but then I would revert to the default in my brain and work on all the ways “I” could control life. This did not make a happy Denyse even though I felt I needed to look like I had things under control. Ha! My Irritable Bowel Syndrome told me in its very special way “no you do not!”.

Into 2017 we (my brain and my feelings) went… and matters worsened. And I hated how reclusive I became. I rejected ideas of trying exposure therapy because ….no control!  It was a to and fro between head and heart (with the gut in the chorus) until matters changed dramatically.

Late March – early April 2017.

I HAD to follow through with using graded exposure therapy to get my awfully sore gums and teeth sorted. I did.

It felt a bit better and when my new local GP met me and suggested a small dose of an evening anti-depressant from the ‘old school’ which would help ‘firm up’ my IBS issues, I trusted him and gave things a go.

THEN. May 2017.

I had a biopsy, I thought something serious was wrong in my mouth post teeth/bridge extraction and I was right. Squamous Cell Carcinoma in my upper gums and away I went on the cancer journey.

WHAT DOES HAVING CANCER HAVE TO DO WITH UNCERTAINTY?

Everything for me. I had to change so much in terms of my ill-founded beliefs that I could control my life.

Nope. That was a BIG lesson.

What I did learn, and have  learned every.single.day. since May 2017 is that I need to trust those who care for me and provide their services as they know more about this cancer of mine than I ever will.

This does not mean I surrender because no-one does that without thinking. What I learned about myself is that I can get through some very tough times (I did and have) because I can let time pass, let my body heal in its way and take the advice of those who are experts in the field where I am not.

Of course I ask questions! In fact, I sent off about 20 before my huge initial surgery in July 2017 but I had a much greater sense of security in having met the Professor and Associate Professor, the Prosthodontist and the Practice Manager. No-one seemed to mind my questions and it was clear to me, that by asking I was helping myself be better prepared for not only cancer surgery but for the relative uncertainty in the life ahead.

On Thursday last…waiting for the next part of the treatment. Selfies rule, right?

And now, into almost the fourth month of 2018 I am now driving myself to the prosthodontist appointments in Westmead and managing my physical and emotional health whilst doing so…and in between visits and surgeries I am doing the best I can to stay well and do as is required for my continued health.

I am letting uncertainty into my life as a gift for what it teaches me:

patience

courage

confidence

trust

I have said, more than a few times, that this cancer diagnosis (and subsequent surgeries and treatments) has helped me get back a Denyse I really like being and a person who is more out-going (as I used to be many years ago) and one who is more loving and giving to others.

What lesson(s) in life have you learned about yourself?

Do you have any issues with surrendering control?

Tell me more in the comments if you are prepared to share!

Denyse.

Joining with three generous and sharing bloggers who host link ups:

Kylie Purtell here for the I Blog On Tuesdays link up.

Sue L and Leanne L  here who host the Midlife Share the Love Linky Party on Wednesdays.

Leanne who is the sweetest hostess here on Thursdays for Lovin’ Life.

 

 

 

 

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