Wednesday 23rd June 2021

Who’s A Volunteer? 34/2021.

Who’s a Volunteer? 34/2021.

It’s said, by many, that when you get to retire from paid work you might like to consider being a volunteer. I agreed with that notion.

Are you a volunteer?

Maybe you are not even retired but still a volunteer.

Here’s something about what this has been for me, and with a few notes about my husband’s experiences.

Retired Couple. 2015.

From this Australian government organisation in 2015 here is this.

           Definition: Volunteering is time willingly given for the common good and without financial gain.

The following areas are not considered to meet each of the core requirements of volunteering (‘without financial gain’, ‘willingly given’ and ‘for the common good’) and hence are not included in this definition of volunteering. It is acknowledged that many of these have a constructive, positive and vital role in society and may exist alongside volunteering and / or provide a pathway into volunteering.

• Direct family responsibilities are excluded. It is recognised that direct familial relationships vary for different people and social groups and so this is open to individual interpretation. In addition, foster carers have many similarities with volunteers, but because of the family relationship, these are outside this definition of volunteering.

• A number of programs are highly structured, with fixed requirements and provide options of volunteering type activities but with limited choice and/or varying types of in-built financial or reward outcomes. These vary widely and are excluded from this definition. Examples include:  Compulsory educational service learning (where students are required to volunteer as part of a course) Mandated court orders including community service and fines  Internships  Formal work experience / vocational placements  Mandatory government programs  Limited choice labour market government programs

• Volunteering requires a donation of time. Other types of donating such as giving money or materials and donating blood are not considered volunteering, although it is acknowledged there is a time element required in these forms of donating

My Experiences.

These started around the time I was in partial retirement from around 52. Later, they were when I was over 65.

  • With caring for our grandchildren, over time, for no financial reward ever but the joy of memories made. However, see above, ‘not about volunteering.’

 

  • teaching English in women’s homes in the community. A one-to-one experience, for which I had to do some training, at no cost to me, and also provide materials for the women. I enjoyed it and I think the two women became more confident over time of having an English speaker helping them I found it a bit too one-sided as the women, who were at home because of child-rearing were not completing even the smallest of ‘between times’ work. 

 

  • helping in Smith Family Parramatta  office prior to Christmas one year taking phone calls from people who wanted to register for the Smith Family Christmas hampers. This meant I had to drive into Parramatta, park my car, and attend the office for about 4 hours. I took down details and recorded them so families could be included by Christmas. It was quite boring for someone who had only recently ran a school but I also needed “not” to have responsibility to assist my mental health recovery. That role finished abruptly when I managed to break my ankle getting out of the car at home after a shift there. No, I did not pursue work related claim.

 

  • becoming a volunteer at local art gallery did not even reach training stage. Once we arrived on the Central Coast, I wanted to settle in (as I thought then) with some busy activities. Trouble was that emotionally I was not up to this role’s training requirements (I.B.S. would strike any time) and I also add that by the time I decided to step away from this, I realised how ‘cliquey’ the other volunteers were and felt excluded anyway. I was new to the area and ‘felt’ I was an outsider.

 

  • looking after ethics program in local area when we first moved to the  Central Coast seemed like a win/win for me as I needed some work of a productive kind while my husband already had his weeks in retirement sorted. I liked the people I met at the schools and was already helping get new people on board to be teachers when I felt something that did not seem quite right. You see, I felt conflict. I am, NSW teacher/principal at heart, and this program was independent to schools and I could see a conflict of interest  that I could not brush off. I sensed, and heard for good reason that it was an Us vs Them issue and I could not continue. I tried to let them have this feedback but it was a political hot potato and I left.

 

  • teaching mindful colouring was something I was passionate about in the midst of my first year of doing my best to settle to a new way of life. The local independent bookshop was happy to support my plan where I would supply all materials and I just needed a space. A local cafe owner said yes to that as we would be buying coffees. And off we went. We had 4 the first week. Then down to 3. Sadly, I was not prepared to continue because of this. I really did think this would work. No it did not. 

 

  • creating bookmarks for the charity The Big Hug Box. This was a passion for me as I was using my distraction activities of art, designs and more to create bookmarks as part of my post-cancer treatments. I’d be helping this new 2018 charity with my donations of goods and time. I also donated more than 300 bookmarks over time and took part in a packing day. Still on call if needed but I stopped the bookmarks.

 

  • teaching mindful mandala making and colouring because I wanted to share the ways in which this is helpful for our emotional health. I instigated this idea through my local library. Honestly, just as well I have determination because so many stumbling blocks were put in my way… no personal indemnity insurance ( and no, I was not going to pay for it) and then, oh, you would have to do our volunteer course to do this here, and no we don’t have any training coming up. I was ready to give up, when the local librarian – all part of the huge council area – said, you can have the space and I will say I am the organiser. Truly. Anyway, it went well over 4 weeks. I provided everything. I did offer it again, and waited in the empty room on two occasions and after that, I did not return.

 

  • I also offered to a women’s shelter that I could do this course in mindful colouring if they thought there was a need. They said yes, but without my person indemnity insurance, I could not start. So, another loss.

 

  • I also supplied Chris O’Brien Lifehouse with books of my designs and many pieces of media for in-patient art and visitors’ mindful colouring as it was a practical contribution I could make as I lived 2 hours away.

 

  • I am an ‘unofficial’ supporter  of Public Education via my social media and other presence and it’s one way I like to stay supportive and connected. 

 

  • In 2017 I was diagnosed with a head and neck cancer, and in a way to help me understand more about my cancer (there are many types of head and neck cancer) my two surgeons directed me to what was then called Beyond Five. Over time, I learned more about Beyond Five and the almost 100% volunteer support it requires the website going, changing and being of use. About a year into my recovery, I shared my story with Beyond Five, and then following my head and neck team’s assurance I seemed to be doing the right thing with my social media and other messages, I was invited to become an  Ambassador for what is now called Head and Neck Cancer Australia.

 

  • Being a member of the local Central Coast Head and Neck Cancer support group which meets monthly and being a contributor to sharing knowledge and awareness to others affected as patients or carers or family members.

 

  • I was very pleased to know I could be a mentor for Public Education via another way, supporting a student with a funded scholarship. However, over the time of being accepted, and then getting ready to help this person, I was not confident of the ways in which the program was run. I wanted to feel I could find support as I was learning the program via on-line systems but with little to no communication, I have declined their offer. Sadly, with some organisations this can be what happens.

 

  • My blog has been a voluntary activity. I have been able to write, share, find friends from this amazing medium. I do it all on my time, when I can, and it’s a great volunteer role because “I” am in charge of this one. My blog is over 10 years old now and brings me a great deal of personal reward.

My Husband’s Experiences: not all as a retiree! The last 3 were.

  • P&C President at our local primary school for 7 years our son was there.
  • Scouts President whilst our son was part of cubs.
  • Volunteer Teacher of Children in The Westmead Kids’ Hospital.
  • Safety House Co-ordinator in our neighbourhood in the 1980s -1990s- remember those?
  • Local Community Progress Association President.
  • President Local Drama Society in a Country Town.
  • Musical Director of performances over 3 years in that town.
  • President Ecumenical Council at local Church in the country town
  • National Charity Telephone Crisis Support.
  • National Charity  Face to Face Counsellor.
  • Driver: Cancer Patients To Appointments.

Some feedback we would LOVE to give to organisations where we no longer volunteer. Do not, please, take our service or time for granted. In my husband’s case, he PAID hundreds of dollars towards his training to be National Charity TSC…and as he was also doing a University course to become a trained counsellor, there were costs there. However, he was pleased to be able to help and learn via his supervisors how he was proceeding. This is when it becomes tricky. Those ‘people’ in charge of volunteers are paid and for some, the power of the position became a lack of respect in dealings over time. It does not take too much guessing to know why volunteers may leave. In my husband’s case, he did leave to become my carer as I had just had my cancer diagnosis. In another instance, the driving role, the system was so poorly organised on some days he would leave our place at 8.00 a.m. and not return till 6.00 p.m. because of poor planning for patients’ needing being collected, taken to the hospital and then collected.

He no longer performs any volunteer roles. 

 

Some further comments about volunteering here.

https://www.oversixty.com.au/lifestyle/retirement-life/5-amazing-benefits-of-volunteering-in-retirement

1. Stay active and engaged with life

2. Helping others makes you feel happy

3. Make new social connections

4. Have new experiences and learn new skills

5. Change someone’s life – change your own

 

My husband and I also ask each other, is it because we have both been leaders in our work places that we find it hard(er) to be a volunteer….or maybe that is not the reason. We can also see that organisations who need volunteers  to assist their services must go through quite a bit themselves in judging suitability and more. It’s perhaps the reason why I wrote this post. I was so sad to relinquish the mentor role but I also knew, that understanding my need to clarity and certainty in doing this role well, I could not, if I had not a great deal of faith in the organisation’s representative. 

This post comes under a few of my topics, including stories about ageing which I write about from time to time. I know you do not have to be a retiree to volunteer but most of my activities were then. 

Are you a volunteer?

Tell us more.

Denyse.

Linking up here with Leanne for Lovin Life Linky

Joining with Natalie here for Weekend Coffee Share.

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My Stories About Ageing: My New Blogging Category Is Here! 5/2021.

My Stories About Ageing: My New Blogging Category Is Here! 5/2021.

This image of me: Left: Jan 2006. Right: July 2020. Same person loving the elements. But ageing is definitely showing!

Why this?

Why Now?

It’s time.

I have been considering writing stories about ageing from my perspective and experience for a while.

Back Story.

I am now 71. I still find that hard to believe! It could be because my Dad, at 97 is still well and I am ‘still his daughter’. But…no, it cannot be that I am a kid and he is the adult. He, my friends, is elderly, I am ageing. Oh, who am I kidding!

The catalyst may have been this: a photo of us aged 21 on our Wedding Day in 1971 and a re-creation image in 2015 when we were 65 (me) and 66 (B)….as we ready ourselves aged 71 to share our Golden Wedding Anniversary (50 years of marriage) on 23 January 2021.

Or, it may have been this past year because events took hold of me health-wise in a big and somewhat confronting (for me) way:

  1. I found I had to dig deep into my emotional capacity, and remember how I managed my inner emotional health recovering from head and neck cancer, to do this.
  2. I also found the ‘reasons’ for my rectal prolapse surgery very hard to accept and share.
  3. I now know, of course, I am better without the physical problem and that whilst I waited a long time to admit to needing the surgery, it was a lack of shared knowledge from other women that was part of my resistance.

 

Onto the reasons why I will post about Ageing and Stories About It from Me.

From my perspective: Denyse at 71!

On my 71st Birthday, 30 November last year, I posted this collage of me at 68,69,70 & 71,  and in fun, a ‘this is 71’ photo was taken by my husband (at my request) too.

Groups. People On and Off Social Media. For Me? Not For Me?

  • I love to be social on-line. It is easier for me to be on-line and meet up virtually with a range of people than it is to go out and find a group.

 

  • Before I go on. I did have a social group of sorts when I was in education.However, these were often work-based and even though friendships stayed firm at work, they tend to peter out at retirement time and when moving schools.

 

  • When I first retired I became a volunteer and was engaged in some interesting but mundane work and felt my skills could be better used in a leadership role.

 

  • I found one of those easily and was welcomed with open arms. It was not, however, long lasting as the intent of the volunteer group clashed with my educator’s values.

 

  • I started a small group for colouring mindfully. There was a lot of interest initially until it came time to attend. Very few did. It stopped. Sad to say, the same thing happened just 3 years ago too.

 

  • I am not a sport player nor hobby-mad really and do what I can at home to get my creative ‘fix’ now. I joined a group learning crochet but left as no-one had any idea how to teach an ambidextrous person how to crochet.

 

  • I even joined, not for long sadly, a local community group for women only. It spoke of meeting for coffee and brunches. I liked that idea. I went, I joined in but alas the ages were not close to mine, and again, sadly, the cohort was almost all local to the area whereas we are ‘newish’ here.

My Observations as an Over 70s Person.

Getting older is, for many of us, a privilege we do not always appreciate.

I admit having a cancer diagnosis out of the blue in mid 2017 sure was a wake-up call to thinking “we are immortal” but I whilst never thought I was dying it gave me a new appreciation for health and recovery from cancer.

I know that I am very grateful now to receive a part-aged pension income, which added to my husband’s pensions gives us a reasonable life here as a couple who are renting.

I don’t mind even feeling somewhat invisible as an over 70s woman because it gives me a chance to be an observer and I like that!

What I notice, particularly now, is that on social media: groups on Facebook, communities and twitter and instagram, that I do not see (nor hear of ) people who are close to my age.

Even the groups geared to seniors, older Australians, retirees, generally cater for those from age 50 to say 65.

And, as I found out in COVID 19 times, now that my husband and I are 0ver 70 we are classed as:

  • elderly
  • vulnerable

Why Blog About It?

I feel somewhat left out!

  • By groups even for seniors and older people.
  • The starting age is now 21 years younger than I am.
  • I want to have a voice that matters to others who might want to hear/read stories of ageing….
  • ones that keep ageing  reality-checked to counter balance with the “promises of using certain products to stave off….”

I will continue to write more here.

  • I want to be included but I sense that in my particular social media setting I am definitely older or the oldest of a group’s cohort.
  • In fact many people I love to chat with and catch up with are indeed closer to my daughter’s age and she is turning 50 this year.

But, that is good for me too as I am flexible in how I interact….

Yet, I want to be the voice (here) of reality in ageing as I wish I had known more!

What Do You Think?

Have I gone too far?

Do you every imagine yourself actually ageing with significance?

Every decade I see people bemoaning the zero coming up.

Really?

OK, for some I imagine it is scary.

The unknown perhaps but since the internet is here, maybe “I” can be a better heard voice of wisdom, failures and experiences for turning:

40

50

60

70.

Am I opening up too much?

Would you like to know more about my experience of ageing?

How could my story help you, perhaps?

Maybe you might share your thoughts in the comments.

Thank you.

Denyse.

Joining with Leanne and friends here for Lovin’ Life Linky.

 

 

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Self-Care Stories (#4) in COVID19 Times. 28/51 #LifeThisWeek. 56/2020.

Self-Care Stories (#4) in COVID19 Times.  28/51 #LifeThisWeek. 56/2020.

I went looking for my Self-Care Story #3 and found I did not write one! What?! No, it was because “I” decided to get another of my Telling My Story chapters published. So, even if I did not do #3, I am back to write what the latest is for me and self-care.

Self-Care: Regular Routines.

As many know, my routines post-head and neck cancer surgeries and treatments have been to help me re-connect with the world out there, socially and physically. This was something I began about 3 months post-operatively in 2017.

I was getting used to a different body. I had always hidden it as there was too much fat…my words. So, when anxiety and head and neck cancer helped me lose a lot of that fat, then I found C L O T H E S a very attractive way to spend my time…looking, trying on…and wearing.

It was a huge boost to my ego and generally to my health over all.

I coupled ‘getting dressed with purpose’ to going out for a daily coffee, where I would interact with others and despite no teeth on top for 14 months, I made friends where I went as I had conversations.

There is no way my reconstructed mouth was going to stop me talking!!

Then in 2020 Self-Care Got a Shock.

From around March, self-care the way I used to do this every day had to stop. The shock for me is that I wondered how I would deal with the restrictions that came with self-isolation, COVID-19 thank you not.

I was understanding cognitively what I had to do, like everyone else, and that was stay home most of the time and only go out for essentials. I remembered my shock as the first day of real change came because I went to my local shops for some groceries, and everything was being locked up, closed off, taped off….sad to see. Then I thought of all those people and their employment (sad) and of the people whose daily routine was to go to those shops and now they could not (sad again).

I also found, as time went on, that I needed to change my attitude and thinking about what was happening. Yes, we had a virus somewhere in the air that no-one could see or touch, and yes, it had to change the way we went about our daily lives. I recall that I got a shock/surprise at the restrictions placed upon us even to visit the chemist and the doctor. I needed time to process what was in fact, good safety measures.

Changing My Thinking During COVID19 Times Helps Self-Care.

So, over time, I built-in some new ways of integrating self-care for me with what we had and had not. These three quotes, source is in image, have probably best summed up how ‘life is now for me’.

 

Telling the Self-Care Stories in Images. March – June 2020.

How is your self-care these days?

Maybe you’d enjoy this 18 seconds…

Denyse.

Link Up #197.

Life This Week. Link Up #197.

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

* Please do stay to comment on my post as I always reply and it’s a bloggy thing to do!

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next week’s optional prompt 29/51 Your Choice. Mine is: World Head & Neck Cancer Day. 20.7.2020

You are invited to the Inlinkz link party!

Click here to enter


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Taking Stock #3. 27/51. #LifeThisWeek. 54/2020.

Taking Stock #3. 27/51. #LifeThisWeek. 54/2020.

Where Am I….

How Am I

What Am I….

Why Am I….

G R A T E F U L.

 

 

 

As it’s been the practice for Taking Stock in 2020 I found the photos to represent the prompts. They are not in prompt-order. Forgive me!!

Have you taken stock recently?

Denyse.

Link Up #196.

Life This Week. Link Up #196.

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

* Please do stay to comment on my post as I always reply and it’s a bloggy thing to do!

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next week’s optional prompt.28/51 Self-Care Stories. #4. 13.7.2020.

You are invited to the Inlinkz link party!

Click here to enter

My adapted list of prompts for Taking Stock.

Making:
Cooking:
Drinking:
Reading:
Wanting:
Looking:
Playing:
Wasting:
Wishing:
Enjoying:
Waiting:
Liking:
Wondering:
Loving:
Hoping:

Marvelling:
Needing:
Smelling:
Wearing:
Following:
Noticing:
Knowing:
Thinking:
Feeling:
Bookmarking:
Opening:
Smiling:

Original Taking Stock List is here, from Pip Lincoln.FacebooktwitterpinterestFacebooktwitterpinterest
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Half Way. 2020. Year of Gratitude. 53.1/2020.

Half Way. 2020. Year of Gratitude. 53.1/2020.

Who knew how 2020 was going to be?

No-one I am guessing!!

However as someone who chose “Gratitude” as her word of the year, it is timely for a review.

In January, for the first post of the link up in 2020, I wrote this.

Over the past few years my husband’s words to me often included “what have you been grateful for today?” or “what went well for you today?”. Yes, I could answer him mostly in a positive way but until I had a shift in the form of my own revelations I guess I was paying lip service to gratitude. From time to time, I would think about what I was grateful for and write things down then I would leave it.

I need to add these words that are for me, similar to gratitude and will see me using them:

thankful

blessed (yes, not a joke)

content

grateful

fortunate

I have tied in my second instagram account to this blog, where it posts on the Facebook page for Denyse Whelan Blogs, here, each day of the year to date….using gratitude as my underlying theme. However, over time, I noted some newer ways in which I could be grateful:

noticing

wondering

sensing joy

and so on.

Why the review?

I was starting to feel jaded.

I guess the year itself, COVID as the particularly unwelcome visitor after the summer from hell, then flooding, did not help.

I have also needed to have some physical health matters investigated and that takes a toll. I know I do make the effort to see the good in every day, and to remember what is most important: my life, my partner in life, my family, friends and being safe and well….

Then I thought “is this true?” that I am finding it harder to be grateful?

Sometimes my mind will tell me lies!

Scrolling through this 3.36 minutes of all of the photos from the first 6 months tells me that I could search and find gratitude.

This was added to my YouTube channel via the One Second A Day App I use to collate and share my daily instagram photos.

I will, as they say, continue, my daily gratitude practice!

What are YOU grateful for today?

Denyse.

 

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The Value Of A Smile. 46.1./2020.

The Value Of A Smile. 46.1./2020.

I’ve been contemplating the ways in which smiling can improve my/our health.

Maybe too, because of being socially isolated and  when being out keeping our distance, I have noted that when engaging with people a smile cuts through any communication to be gain a positive response often with a smile back!

Have you noticed this too?

Regular readers here will know I lost my smile for a long time when the top half of my mouth (and some of my top lip too) was removed because of head and neck cancer, and that I really, really missed my smile!

Recovering from Cancer Surgery 2017. Smiling as Best I Could.

Interesting to get to know my needs for social inclusion were/are based on my ability to connect with my smile.

I think it is fascinating that of the three things I lost for a while after the July 2017 surgery: ability to eat & drink, talking clearly and smiling…that I found

S M I L I N G was what I needed to do most.

There is science in this too!

Recently I read this:

We shall never know all the good that a simple smile can do. Peace begins with a smile.

Mother Theresa.

Years ago, I was seeing a psychiatrist for some issues and he talked of the fake it till you make it smile. It seemed silly to me then, but apparently there IS something to this.

I can share this practice , from my experiences of meditation and being mindful, of not allowing myself to retreat or resist what I am not liking. I still need to remember this. In fact, I ask myself ‘what am I afraid to admit, or do or be’?

I need to be in the moment. The only moment as that’s all I have.

Yet, the physical act of helping my body make a smile, works. It’s like a circuit breaker. I can look in the mirror and smile. Not always genuinely but it changes things.

Further advice in troubled times:

  • life the corners of your mouth with your fingers, literally putting a smile on your face.

  • let the smile remind you that acceptance is more powerful than resistance.

  • breathe deeply, then exhale slowly

  • invite yourself to be curious about whatever set of circumstances initiated your resistance.

           Ashley Davis Bush: The Little Book of Inner Peace.

I do engage as much as I can with feeling gratitude each day (and made a promise to do this every day in 2020). Smiling reminds me of how grateful I am for my health, and that even though my top lip is shrinking back somewhat, smiling is one very sound exercise as is connecting with the people around me.

I made my first vlog…I am not sure that is what I call it…but I now have the ability to make mini-videos at home and sorted my channel on You Tube to be able to do so. Yes, the ending is a bit unproffesh but the message is mine!

Take care, people….and do remember to smile.

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Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

In April 2017, after much searching for “why” my upper gums and palate were so sore, swollen and inflamed, I insisted that my dentist “take the bridge and teeth out, please as…I need to know what is under it.” That was done after almost 3 years of “wondering why” and being told many different reasons by dentists that it was most likely candida and “you are not keeping under the bridge clean enough. Sigh. This story can be found here along with many as I have journaled the Head and Neck Cancer story here on the blog.

On 17 May 2017, after the removal of bridge and teeth, with worsening gum conditions, I received what was, in many ways, the answer I feared or at least had considered over the past year or  more before. Yes, it is CANCER and it is called Squamous Cell Carcinoma and off I was sent to the BEST place and people ever for more diagnosis, subsequent surgeries and much much more.

 

Summing up each year as a head and neck cancer patient with a rare diagnosis. 

2017.

May & June: Meeting my surgeons at Chris O’Brien Lifehouse. Examinations, testing and discussion on maxillectomy and using part of my leg. Visits to Westmead Oral Sciences for future mouth reconstruction preparation. Waiting. Testing. Being very concerned but at least I had the answer!

July: 7 weeks after diagnosis the major surgery of 11 hours. ICU and then recovery in single room at Chris O’Brien Lifehouse. This was for 10 days. Learned that I recover well and that I could speak (hallelujah) and eventually swallow water with no problems. Home. Learning to live much differently. Back for checkups: particularly of my leg which had donated skin and flesh.

August: September: October: at home recovery, lots of community nurse visits, learning how for eat differently and prepare food for myself. Independent walking then became driving the car again Back for a post-op check and to hear what was next.

November: On the day the same sex marriage result was announced I went into surgery for more skin to be added inside my mouth: taken from my thigh. It was all part of hopefully allowing my mouth to eventually settle to take a prosthesis of teeth.

It was announced I would become a Community Ambassador for Beyond Five.

December: watching progress of mouth and sending photos of the inside to my lovely Professor Clark for him to see it was going OK. Always relieved to hear back ‘yes.’

2018.

January: continue as for December.

February: third surgery. Adding a stent into the top part of my mouth to allow skin to stretch and eventually be able to fit in the prosthesis of teeth. Alas, this failed as the stent was removed too fast by my prosthodontic team much to my professor’s dismay and…..

March: I got the news a fourth surgery would be happening. Initially not happy at all, but realised it was inevitable…and my mouth was particularly challenging as they try so hard to work with ‘what is’ to have me look as much as possible as I did post any head and neck surgeries.

April: more time for me to see the prosthodontist to check the healing mouth and for my team to consider what would be next.

May: almost 12 months from diagnosis, back to COBLH as I call it for short….and a much bigger stent added in another 2+ hour surgery. Wow. Thigh gave up more skin for inside my upper lip.

June. July: So many drives back and forth to Sydney for prosthodontic work: measuring, practising with models of prosthesis with the eventual promise of teeth up top…..

World Head & Neck Cancer Day: July 2018. Held a virtual Soup for the Soul a fundraiser for Beyond Five and met the Central Coast Head and Neck Cancer Support Group at Gosford and became a member of this group.

21 August; Yes. Upper prosthesis fixed into the abutments and I had a smile back (a good one too, thank you team) after 14 months.

From then until next year, 2019, I had a considerable number of visits back to Westmead with adjustments and I learned ‘how to eat’ with teeth that were nothing like how my mouth had been post-cancer. More on the page as linked before.

2019.

January. An unexpected visit to COBLH for my head and neck surgeon to examine ‘extra skin’ which had begin to grow near the abutments on one side. This visit, as I found out directly was to ensure “cancer had not returned”. OH. It had not but it threw me a bit because I had not even given that a thought. This was when I realised CANCER is never far away from our thoughts.

February, March, April: some visits to both professionals in my team. Making adjustments and checking progress of skin inside my mouth. I admit I was often nervous of outcomes as my mouth was pretty sore most of the time. No-one could tell me ‘how long’ that would last but I continued to be reassured by my prosthodontist in particular “everything looks OK” “you are doing a good job keeping the area clean.”

May: 2 years since diagnosis and I was proud to have made it. I was incredibly grateful to my body for healing well and to all who cared for me and in particular to my patient and good listener husband.

End May: CT scan showed “all clear”

June: Visits became more spread out to the surgeon and prosthodontist and I navigated using these teeth to eat. It was and is a challenge. My right leg had some changes from the loss of the fibula as my right foot became affected with gait. But all OK really.

July: Continued visits to Westmead and put my energies into blogging about Head and Neck Cancer, interviewing a patient for Beyond Five and being part of World Head and Neck Cancer Day at Gosford Cancer Centre.

August, September, October, November, December. Regular check ups and visits to COBLH and Westmead but longer intervals. In October it was raised by my surgeon that a possible fifth surgery could be planned if mouth needed it but he had no real plans for it at that stage. Continuing to help raise awareness of head and neck cancer in various forms via social media. In November I celebrated my 70th Birthday!

 

2020.

January: continuing own care and progress at home.

February: visit to the prosthodontist where he was pleased with how upper gums were looking. I admitted to him my concern there may be need for further surgery as outlined by my surgeon and he took photos and would confer with him as needed. Took part in filming for Beyond Five series of nutrition videos for head and neck patients, carers and professionals.

Early March: Saw my head and neck surgeon who was delighted with my progress, no surgery needed and I remain “his poster girl for recovery”…see you in 6 months!! I was a guest speaker at a Charity Ball held by 4 doctors at Avoca to raise awareness of head and neck cancer and aid the work of Beyond Five with a generous donation.

And then COVID-19 stopped us all in our tracks for quite some time.

End May: as I write. My prosthodontist should have seen me for a check this coming week but Westmead is not open for regular visits yet. I am not concerned as my mouth is OK. I am not due to see my head and neck surgeon till September. I am going to my dentist here (the one where we got the diagnosis sorted!) in early June as he ensures the 8 teeth I have remain in good order.

Record Keeping: For Me!
Visits to Prof Jonathan Clark: Chris O’Brien Lifehouse. 2 hours each way by car. M1.
2017
Diagnosis: 17.5.17.
18.5.17 (diagnosis: surgery plan w A/Prof too)
6.7.17 (surgery #1 in COBLH)
27.717 (post op: A/Prof)

10.10.17 (cancer check)
15.11.17 (surgery #2: day. Down & home same day)
20.11.17 (post op)
5.12.17 (post op St George)

2018
7.2.18 (surgery #3: day. Stayed night before)
14.2.18 (post op St George)
1.5.18 (pre surgery #4)
16.5.18 (surgery #4 day. Stayed n/b)
2.10.18 (cancer check & upper prosthesis)
– long time between checks as I was seeing Prosthodontist a lot!

2019
8.1.19 extra cancer check: skin growing ok
19.2.19 cancer check
21.5.19 cancer check & CT done. All clear.
24.9.19 cancer check

2020
3.3.20 cancer check.

17 total to date.

Next due: September 2020.

Visits to Westmead Prosthodontist. 2 hours each way by car. M1.

2017  24.5.17 (pre surgery #1)30.5.17 6.11.17 (pre surgery #2)

2018  23.2.18 (post surgery #3) 1.3.18  7.3.18  15.3.18

22.3.18 28.3.18 12.4.18  28.5.18 (post surgery #4) 31.5.18

12.6.18  15.6.18  18.6.18  25.6.1  3.7.18   10.7.18   16.7.18

23.7.18   6.8.18   9.8.18

21.8.18: Upper Prosthesis Issued

28.8.18  10.9.18   25.9.18 8.10.18 (lower denture prep)  25.10.18

5.11.18  15.11.18  19.11.18  27.11.18   11.12.18

2019  21.1.19 (unscrewed UP)  4.3.19

13.5.19  16.7.19  5.8.19

17.9.19    25.11.19

2020 17.2.20  41 to date  Due: 25.5.20 (postponed due to COVID

What is life like for me now as a head and neck cancer patient…over 3 years later?

  • I think about my cancer less
  • I maintain my cleaning of the mouth more willingly and never miss it because I would hate the spoil all that hard work!
  • I accept that whilst I have ‘teeth’ on top that look fine, they do not function nearly as well as natural teeth.
  • I know how to allow for that more these days in terms of food choices.
  • I am more grateful than ever to have had such a cancer experience so that I can share, help and be part of a community which may need assistance from a patient like me
  • I am less fearful of cancer’s return but I am never complacent
  • I do my best to help others who may find my story helpful
  • I blog less than those initial 2 years but maintain the updates about head and neck cancer as it is for me
  • I connect with others on-line to encourage, share and offer support where it may be needed
  • I like to help where I can to keep the messages of head and neck cancer current
  • I do this via my social media and re-sharing words, links and information from Beyond Five
  • I maintain social media connections via a facebook group from New Zealand for head and neck cancer patients, carers and families
  • I am willing to share my story for others: meeting them, making a speech and connecting via emails and on-line

However, I am less the ‘head and neck cancer patient’ these days.

I am more Denyse, who is a retired K-6 principal and teacher, wife to B, mother to K & M, and Grandma to eight wonderful grandchildren. I remain passionate about education: of the self, and of kids…and support on-going education at any age. I love to connect via my blog, meet up for a coffee and cake, take photos to share on instagram, make art in all kinds of ways….and get outside to be “oh so thankful” to be here…to be well….and to share!

Denyse.

23 May 2020.

Written, in part,  in readiness for World Head and Neck Cancer Day in July 2020. Events this year will be virtual and I am sure, I will be sharing more as time goes on. For now:

 

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Special Anniversaries.19/51.#LifeThisWeek. 38/2020.

Special Anniversaries.19/51.#LifeThisWeek. 38/2020.

May is a month of memories for me and that is the theme for my ‘special anniversaries’.

In my life, and my family, I have tended to be the one who remembers. Dates, places, weather, occasions and more. Sometimes not perfectly well. I give my age as an excuse now, but I tend to be pretty much sensitive to time of year, weather and place. So, this is my reason for picking May….because:

May, in my instagram feed, is a time I am using memories of people, occasions and time for mark the occasion. For example, without giving years away, 3 women who are very special in my life have their birthdays in May. My 2nd granddaughter on 6th, my niece on the 22nd and my late and cherished Aunty, on 31st. It was in May 2006 we celebrated what we did not know was my mother’s last Mother’s Day. Mother’s Day was an occasion for her but as the years have passed, we (the family) do not make a fuss…because, I found it was a bit of a pressure to be honest..on me! So, that my friends is how I feel. Further on I explain more.

More about May. THIS is probably the reason I chose May for this as my post. It was in early May 2017 that the investigations began in earnest for ‘what the heck was happening in my mouth’….and yes, this has been recorded here in detail. However, just before I made the news of my cancer diagnosis public, I was honoured to have my story published in Celebrating Women. It was a great distraction too. I blogged about it here.

And then I knew what was under those teeth and the bridge that covered them…squamous cell carcinoma AND it had spread to under my top lip too. That knowledge –  shocking that it was cancer but not surprising either – given how long I had been putting up such pain, aggravation and limited ways to eat for over a year!  And I got this news via the phone call from the oral surgeon, at home, alone on Wednesday 17 May. Read more here if you would like to.

The biggest challenge though for scared me (of IBS and travelling not cancer!) was that I would have to be driven by my husband to Sydney’s Chris OBrien Lifehouse on Thursday 18 May 2017 where I would have my first (very long as it turned out) consultation re my head and neck cancer and what would happen to eradicate it. All, we hoped! I have written about the courage it took for me to test my exposure therapy is a big, big way in other place, here for example. And, we set off and became better informed – BIG time – about what was next.

What on earth did I do then? Oh, I was OK…after some time to gather myself emotionally, and my husband and I drove the long drive home in the dark with a feeling of confidence that where I was to be treated and by whom meant the confidence of knowing it was right for my cancer. Both of the head and neck cancer surgeons – the A/Prof Ebrahimi and then Prof Clark ‘felt’ then after the pretty rigorous examination that surgery only would be required but until that time, and lymph nodes’ samples etc were taken for pathology they could hope for no radiation.

But wait, there is more. Always more it seemed to test me that May!

24 May and 30 May were “back to Sydney” appointments but this time to Westmead in Sydney’s west. We knew this area well as we had lived in the region for many years. It was, however, the first visit to Oral Sciences…aka the dental hospital where I/we would meet the man and his assistant we got to know very, very well over the ensuing years. I admit I needed my husband there with me and the tears on that first visit came pretty frequently as I did not compute/understand well as all what would be happening but when chatting with my husband he was very confident of the prosthodontist’s role and skill in the area where I was to have surgery. He also accompanied us to radiography to get exacting scans done and to test blood flow in my legs. It was later that I found as I had better blood flow in my right leg, then that would be where the fibula and flesh/skin would be harvested not the left as originally planned.

Other May Memories!

In my recollections of May, I found Mother’s Day to be more of a day of obligation rather than a day to celebrate mothers. My mother in particular. I have often thought it a sad thing though because it is my father’s voice of judgement I hear re mother’s day not Mum’s. Ever.

It’s a complicated thing this life and traditions isn’t it! He (Dad, now 96) was brought up in a single parent childhood following his Dad’s untimely death in 1935 and Dad’s mother grieved her whole life after that and I am pretty sure nothing that was ever said nor done for her was appreciated wholly.

For whatever reason, then Dad made sure “we” celebrated our Mum. I have memories of breakfast in bed for her.,…and she did not enjoy that! I do recall her appreciation of cards and flowers. We, as then grown up children, might try to combine a mother’s day morning or lunch or even dinner.

To me, also a mother, it felt like “I” missed out. And I dislike that I even thought that.

So, despite my now-knowledge of where all this probably emanated…I still thought similarly in ‘shoulds’ around Mother’s day. So, I often got disappointed…and I am embarrassed about that. I vowed sometime back never to do ‘that’ to my adult kids so celebrated without any fanfare at all nor expectation until we left Sydney.

The first year I heard from no-one.

Yes, I was sad…and on subsequent Mother’s Day I may have had a card or a phone call or both from one or either of our adult offspring. In 2017 not knowing of my cancer investigations I had a visit to our place. Nice. We put on lunch. See photo above.

Then in 2019 I met my daughter and we had morning tea out together. No kids. Just us.

This year, as this is posted, we will have had our first visit in COVID-19 back to her house for a mother’s day morning tea.

Making New May Memories. 

  • Mum taught me quite a bit about cooking and often have her in my mind as I try to replicate her recipes. To that end, as I am visiting Dad this week I have made Mum’s recipe of lemon butter just for him. Food is such a powerful memory!
  • Mum also advised me about colours and planting of colourful flowers and I use this knowledge in picking and placing plants.
  • Mum’s smile was one I inherited….and a liking for brightly coloured clothes.
  • I make May a time for reminiscing but also for celebrating…..how far I have come, post head and neck cancer!

ONE Year ago in May I got my “end of two years” of cancer surgeries and treatment Apple Watch and it is worn with pride every day and continues to motivate me to move more!

My reward for 2 years post cancer: apple watch

TWO Years ago in May I became more resilient than I knew I could be as I faced a 4th (the last, I hope) reconstuctive surgery because my mouth and skin had not recovered well enough for the upper prosthesis to be fitted.

Post surgery #4 was a shock!

THREE Years ago in May I found how many people in my life cared for and about me and it was humbling. Many of those are reading this post now. Thank you all so much for being who you are.

That’s my special anniversary….May!

What special anniversaries are part of your life?

Did you celebrate Mother’s Day yesterday?

Thanks also for your kind words last week AND 100% of bloggers who linked up, commented on my post.

That IS a win/win!

Denyse.

Link Up #188.

Life This Week. Link Up #188.

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