Thursday 27th June 2019

On Being Human. 30/2019.

On Being Human. 30/2019.

It’s the strangest thing, this being human.

One day we think we have this dealing with life sorted….

Then….one thing or many may change that so-called certainty.

The book by Leigh Sales: Any Ordinary Day seeks to explain and find out more about this life of ours.

Buddhist nun, Pema Chodron, and her many books and teachings are in my library now.

I had this book beside my bed and read one chapter a night before I knew I had cancer.

This excerpt is from chapter 14.

According to the Buddha, the lives of all beings are marked by three characteristics: impermanence, egolessness, and suffering or dissatisfaction. Recognising these qualities to be real and true in our own experience helps us to relax with things as they are.

The first mark is impermanence. That nothing is static or fixed, that all is fleeting and changing, is the first mark of existence. We don’t have to be mystics or physicists to know this. Yet at the level of personal experience, we resist this basic fact.

It means life isn’t always going to go our way. It means there’s loss as well as gain. And we don’t like that.

We know that all is impermanent; we know that everything wears out. Although we can buy this truth intellectually, emotionally we have a deep-rooted aversion to it.

 

Are we ever certain of anything, really?

No, just the next breath in and then out we learn.

This has been attributed to the Dalai Lama…..

“Man surprised me most about humanity. Because he sacrifices his health in order to make money.
Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived.”

 

 

The time is NOW. This is all we have.

https://steemit.com/psychology/@keysa/the-power-of-now-the-book-from-eckhart-tolle-that-changed-my-life-a-talk-about-the-ego-of-man-the-future-destructive-thoughts

So many of us, and I put my hand up here, have thought we CAN control what is going on for us in life.

As those who are wisest say, the only thing that IS certain is uncertainty.

But in saying this, there is a kindness too. In this poem attributed to Rumi, I have found comfort in the words during my tougher times of stress, anxiety and of course, recovering from cancer.

The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honourably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

— Jalaluddin Rumi, translation by Coleman Barks (The Essential Rumi)

Finally, something from a recent newspaper clipping. I sometimes do  not agree with Michal Leunig’s words, but this time, for me, he has nailed it.

On Being Human is what we can, be and do each day (and night) to remain well in body and mind. Whilst this can be tough, each of us probably already has some ideas and practices which work. These are those for me:

This is another post, written with self-care in mind and also to relate to the theme of bring mindfulness and more ‘zen’ into our lives.
I hope there is something helpful for you here too.

Tell me more about what your thoughts are “on being human”.

Denyse.

Linking with Min who blogs here for Zen Tips Tuesday. Her guest writers come from all over the world and provide unique and helpful perspectives.

 

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

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

It happened last Friday: 8 March 2019.

International Women’s Day.

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

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

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

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

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

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

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

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


International Women’s Day in Australia

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

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


International Women’s Day today

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

About International Women’s Day

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

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

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

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

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

What did you do on International Women’s Day?

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

 

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

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

Denyse.

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

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

And on Fridays here with Alicia for Open Slather.

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Self-Care: Share Your Story #1. 7/51 #LifeThisWeek. 16/2019.

Self-Care: Share Your Story #1. 7/51  #LifeThisWeek. 16/2019.

It is my plan this year to be accountable to my personal growth via this blog each 7th week.

I will post what I have done for self-care and what I may not have done for self-care and the why and how of this:

Self-Care.

I admit I have been somewhat confused about this as I tread my path through life, so I went to this source and liked the definitions.

What is self-care?
Self-care is any activity that we do deliberately in order to take care of our mental, emotional, and physical health. Although it’s a simple concept in theory, it’s something we very often overlook. Good self-care is key to improved mood and reduced anxiety. It’s also key to a good relationship with oneself and others.

What isn’t self-care?
Knowing what self-care is not might be even more important. It is not something that we force ourselves to do, or something we don’t enjoy doing. As Agnes Wainman explained, self-care is “something that refuels us, rather than takes from us.”

Self-care isn’t a selfish act either. It is not only about considering our needs; it is rather about knowing what we need to do in order to take care of ourselves, being subsequently, able to take care of others as well. That is, if I don’t take enough care of myself, I won’t be in the place to give to my loved ones either.

https://psychcentral.com/blog/what-self-care-is-and-what-it-isnt-2/

Before I Really Understood Self-Care.

Way before I was diagnosed with head and neck cancer, I had quite a few years of being anxious and it was attributed to my (then) life transitions from active grandmother caring for grandkids, part-time teaching and tutoring roles, preparing the family home for sale, and then moving away from all “I knew” with my husband to begin our life in retirement.

This transition was so rough on my physical and emotional health that I lost quite a bit of weight (needed to anyway), had irritable bowel issues multiply and I developed a fear of travelling and more. This kind of thing meant intervention (I wanted it too) by my caring GP and eventually a great psychologist. She was relentless in her way of making me see what I was capable of doing and I admit it was hard at times, but she also gave homework which I (teacher-me) was diligent to do. One such exercise back in 2016 was to make a list of what I did for self-care.

It is an old-ish list but much of it pertains to me still even through the “life lesson of cancer”. I stopped needing the help from this psychologist about 6 months post my first cancer surgery and I only ever saw her infrequently then. Her work sending me ‘my work to complete’ paid off! I carried this with me and had it at the old house in my art room It was a good reminder.

Self-Care Post-Cancer Diagnosis.

In late 2017 after my first big cancer surgery I needed a LOT of time to recover physically and emotionally. Art continued to be helpful. So did keeping in touch with people via social media. I did, after 8 weeks, know I needed more. I missed seeing the ocean and the various spots of nature I love so my husband and I would take a drive to the beach on occasion. I also knew, by the end of October, I needed to ‘do something that was personal’ for self-care and that was when my #dresswithpurpose began as did my outing for a coffee.

At the beginning of 2018 I decided on 3 elements to my self-care every day.

  1. Dress With Purpose and Go Out For a Coffee.
  2. Notice Nature Deliberately Wherever I am.
  3. Make Something via Art or Create Daily.

And now, in 2019, Self-Care.

  • I am continuing to dress with purpose, have a photo  taken and go somewhere for a coffee. Sometimes it is to meet up with a friend.
  • I love my art and mandala making and the mandalas in particular have made a come-back as I knew I needed to get my mind into one place again aka mindful so this is very self-caring
  • I notice my body signals better when I am moving from self-care to self- indulgence. This is mostly related to eating. It has been a joy and a challenge to eat within reasonable limits and not keep on eating. I am s  l  o  w  l  y learning that self-care requires me to be self-aware.
  • The Mindful Eating book and CD and the Mindless Eating book and audio version are teaching me more about MY previous ways of eating than I ever knew. That I am doing this for me is very self-caring. The first post I wrote about this is here.
  • Being able to tell how I am slipping down the self-unkindness slope is even better. That critic that lives inside me has been outing herself a little too much of late, so when I realised, I thought about it and came up with this…..
  • We are all works-in-progress of course. I love that I am learning something new every day even about myself. I have found ‘old voices and messages’ come through when I am more stressed or tired.
  • To help my self-care stay on track I have added reminders in my phone in blocks of time about eating meals, getting off social media, taking time outside, reading and even switching off for the night. It is working well. Mostly. Social media…mmmm time stealer and confidence can wane if I spend too much time there.

Jade Harriman’s tweet caught my eye, and with her permission, I am linking back to her blog post about Self-Care. Jade has 4 pages of ideas around self-care. Do check them out! Here are six.

  • Taking some spending money and going second-hand shop just for fun
  • Buying a bunch of fresh flowers for a friend, neighbour or colleague
  • Going for a run outside
  • Spending time with an animal
  • Washing your hair with something that smells nice and drying it with care
  • Writing a card of appreciation or care for someone in your life

Thank You Jade

And in noting gratitude, I read this and it has resonated as the person “who was/still can be fear-driven’ …see what you think. I believe that when we notice and connect with what we are grateful for and about, then other matters fade into the background.

“Gratitude isn’t about ignoring everything that could be improved; it’s about shining a light on what’s already working, which creates positive feelings about now while enabling positive plans for later. In a very real way, gratitude is the antidote to fear.

Fear views events as insufficient, obstructive and unfair; gratitude sees circumstances as useful, empowering and ultimately positive.

Fear Implies there’s something to hide and run from; gratitude suggests there’s something to embrace.

You can only experience positive emotions and results if you are willing to be responsible for creating them – that means tapping into the part of you that recognises the good both in what is and in what can be”

Lori Deschene:  Tiny Buddha: Simple Wisdom For Life’s Hard Questions.

P 252.  2018 (republish) Rockwell Publishing.

That is it for now. Self-care is on-going.

What are you doing to self-care?

Denyse.

 

 

You can link up something old or new, just come on in. * Please add just ONE post each week! * 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 by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Next week’s optional prompt is: 8/51. My Favourite Decade. 25/2/19.

Inlinkz Link Party

 

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Best Gift Ever. 3/52. #LifeThisWeek. 7/2019.

Best Gift Ever. 3/52. #LifeThisWeek. 7/2019.

The best gift ever has given me food for thought.

I have had some great gifts in my life including these:

  • parents who gave me life, shelter, education, care and loveand who were wed for over 60 years.
  • a man I met and married within 3 months who has loved me for over 48 years now as I have him. This is on our wedding day, 23 January 1971.

  • the first gift of a child: our daughter (story is here) and then much later, our son (story soon!) and even though we did not know much about parenting, both are doing well in their adult lives.
  • a career in K-6 education in New South Wales schools which took me from probationary teacher to school principal thanks to the gifts of others who saw the potential in me, degree courses I completed with loving support from my family, and the children, teachers and parents of the many schools. Latterly I enjoyed teaching and supervising pre-service Masters’ students at University. On many occasions I was glad I could help these people and share what had been shared to me as gifts in my career.
  • the gift of meeting people and socialising is one I enjoy and to this end am doing it in a new area and loving making new connections socially: on-line and in real life, as they say!
  • I love the gift I have been given as someone who notices nature, enjoys solitude from time to time, and has learned so much about herself during some times of turbulence in recent years.
  • The gift I have been given of enjoying art and especially making mandalas has also seen me make 100s of bookmarks to help a charity called The Big Hug Box.
  • How good is it to give back! My story was also in a book that was published. What a gift that was.

But what about cancer? Is THAT a gift? 

I cannot finish this post without mentioning my fairly recent brush with the big C and what a gift that has been.

  • Life is a matter of how it’s viewed by the individual.
  • I do not like having had cancer because of many of the ramifications in my life, yet I know its presence has been a present. Let me explain more!
  • I was in a major life transition which had, in its own way, strangled my confidence and demeanour because of the grief involved. Yet I had some ideas of how to help myself.
  • That series of ideas was supplemented by the gift of amazing professional support, amazing and unending personal support and many hours of time to both learn and absorb.
  • When it was found that I had cancer, up from within me, emerged what had been hidden for almost 3 years and over time, my personal qualities of determination, belief in my surgical and oral health teams and in my capacity to heal and that I could share my story with others as I have and do.

The Best Gift is:

  • A return to “Denyse”. She had been long gone and I am so glad she is back.
  • This is my best gift: I am back. It does not matter I am ageing – that’s a privilege, nor that I have some physical scars I cannot overcome – they’re part of my history now and I am so glad to be here and look at my image in the mirror to say:

Hello, looking OK for someone who’s been through so much.

Well-done, you!

 

What is your best gift?

Denyse.

You can link up something old or new, just come on in. * Please add just ONE post each week! * 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 by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Joining Alicia here for Open Slather and Kell here for Mummy Mondays.

Next Week’s Optional Prompt: 4/51. What Is Hope? 28/1/19.


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Word, Intention or Nothing! 2/51.#LifeThisWeek. 4/2019.

Word, Intention or Nothing! 2/51.#LifeThisWeek. 4/2019.

So, it’s now 14 January 2019 and many New Year’s Resolutions have been made, kept and already broken. I actually do not make them. However, since blogging, I have followed a pattern of making a:

word for the calendar year

Here’s what I did in:

2015: Acceptance. I had NO idea that the year would prove to be much more than I could ever ‘accept’ because at the time I was not equipped with how to deal with my many changes.

2016: FEARless. I would have liked to think this clever play on words would help. In some ways they did, but at other times I found I could not quite shape-up. NB: Am can be a very tough self-critic. Trust popped up somewhere along the way and nope it didn’t resonate either.

 

2017: Kindness. This started well and it certainly made me aware of others’ kindness back to me once I was diagnosed with cancer. I have kept the small design I made for this one and it hangs near my desk.

2018: Started as Brave and then went to Braving and some days later B.O.L.D. took centre stage and I mostly lived this one. Here’s the initial post and a subsequent one.

Sign Above Where I Blog.

My “message to me” bracelet.

2019: What IS it?

I don’t really know…yet. But I have already written and thought about it so much privately.

Maybe it’s because I have had cancer (and it can come back) that I have stopped thinking as positively as I did.

I also add in some health issues that come as a matter of age (70 this year!) and stage and wonder IF I can handle them on top of everything else emotionally and physically in my cancer recovery.

So, I have had ideas, and even some words. I also wrote a bit – a lot – in my journals.

I thought about SELF-CARE a great deal and I know that I can neglect this side of my health and welfare when I go down well-trodden, older paths of what it is like to be ME.

I wrote about that only last September here.

For now, though I would rather not go through the process in just one post as it has been and will continue to be a good old “Work-In-Progress”.

I am going to post what my conclusion is in a second post this week which will be, within itself, a better explanation and understanding of my thought processes! That IS expecting a lot, but as many here know, I tend to tell the truth and open up quite a bit about my struggles.

So, thank you for your patience in advance.

I will have it all here for the next blog post.

Meanwhile, have you decided on a word or intention for 2019 or did you decided “nothing” and leave it at that.

Maybe if I break the code this man is writing I will know more!

I am a bit late to the party for this and I know many of you have published what your decisions are for 2019 earlier.

Denyse.

You can link up something old or new, just come on in. * Please add just ONE post each week! * 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 by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

Joining Alicia here for Open Slather and Kell here for Mummy Mondays.

Next Week’s Optional Prompt: 3/51. Best Gift Ever. 21/1/19.


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Head & Neck Cancer: “Beyond Five” Ambassadorship.2018.130.

Head & Neck Cancer:”Beyond Five” Ambassadorship.2018.130.

Last week I wrote a post called Farewell and Hello. It was pretty long so I stopped at Farewell promising to be back for Hello. Here we go!

Regular followers here know that I was diagnosed with head and neck cancer (squamous cell carcinoma) in my upper gums and under the top lip. The whole story is here, in posts, from the day I was told until the recent post on adjusting my eating requirements when I am out of the house.

Hello, I am now a Beyond Five Ambassador!

How this came about was partly after this day in October 2018 when I was back at ‘my’ hospital Chris O’Brien Lifehouse, but I had offered earlier this year if there was any way I could help spread the news about head and cancer awareness I would like to do so. I had already been sharing the work of Beyond Five here on the blog for World Head and Neck Cancer Day 2018.

Following that day, the Board of Beyond Five met, Sr Froggatt and Professor Clark are board members and Nadia Rosin is Manager, Business & Communications,  and I then received a formal letter of invitation to become a Beyond Five Ambassador.

Role of Community Ambassador

  • • Share your personal head and neck cancer story for use in Beyond Five communication e.g. website, social media portals etc.
  • • Raise awareness of Beyond Five through family, friends, other personal connections.
  • • Where possible, attend events e.g. patient support group meetings, education days to help raise awareness of Beyond Five.
  • • Support Beyond Five grant applications where relevant e.g. as a consumer representative.
  • • Provide feedback to Beyond Five to help us improve and develop the way we work.

About Beyond Five.

Background

Beyond Five was established in December 2014 and is Australia’s only not-for-profit organisation supporting patients with head and neck cancer, caregivers, family and health professionals.

Beyond Five was established to provide evidence based, comprehensive, easy to understand and easy to access information to everyone, regardless of where they live.

Beyond Five is the first organisation in Australia supporting patients and their families through their cancer journey, from diagnosis to treatment and life after cancer.

Mission

Beyond Five’s mission is to improve the quality of life of everyone affected by head and neck cancer through education and access to support and to raise awareness of head and neck cancer nationally. We are committed to working collaboratively with all specialties across Australia to achieve our mission.

 

I have joined the inaugural Ambassador, Julie McCrossin and Marty Doyle too. Their stories and mine, can now be found here on the Beyond Five site. There will be more ‘thinking time’ for my involvement and what form it may take as everyone is going to be on a break soon. We are getting together in February 2019. I look forward to helping where I can especially now I am post almost all of my cancer treatments and now in ‘check-up and check-in’ mode.

I know that I am keen and ready to help others learn more about head and neck cancer as it is not well-known. In fact I had no idea you could get squamous cell carcinoma inside your mouth (and other areas of the skin inside the head & neck region, till my day of diagnosis in May 2017.

And here we are sending Season’s Greetings.

I wish that no-one had cancer of any kind, of course, but the fact of life is we do. I want as many do, to help pay back the time and effort and research that has gone into the amazing surgeries and mouth reconstructions I had. That I can smile and eat well again is testament to the wonderful work of my team and their integration of allied professionals too. I have written posts about how many helped get me well again. Now, it’s onward….and to say I am glad to be an Ambassador for Beyond Five is an understatement. It is an honour and a privilege to be in this new role.

I want to do the role justice, and help others as I too have been helped.

Thank you to the Board of Beyond Five for entrusting me with this role as your Ambassador.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love and with Leanne here for Lovin Life link up.

 

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Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

I am dedicating this post to the memory of a lovely woman whose life was cut too short by cancer. Chelsea, my friend Leanne’s step-daughter lived life to the max. Cancer may have been ‘in her’ but cancer did not take her spirit nor her love of life…and for her family including her husband and your daughter. My shared experience with Chelsea was that we were both patients of Chris O’Brien Lifehouse and because of that connection I wrote one of the Letters to Chelsea Leanne mentions on her blog.

Thank you for sharing the love and the life of Chelsea dear Leanne.

 

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

Update to update: even though I have outlined what was disappointing to me in this post which was an event from last weekend it has also taught me more about my capabilities in eating than I knew. I like many had tended to think eating with new teeth in my gums would be ‘back to what it was’. Not so, and I am now being more realistic and flexible.

Yesterday, 30 November, I turned 69. I had a wonderful and low key birthday celebration at a morning tea for two with my dear husband. We chatted, ate well, had our favourite drinks – small latte with an extra shot for me and English breakfast tea for him. Afterwards we wandered through the grounds of this lovely nursery, bought a plant each and came home to a relaxing afternoon spent at home. It really was just as I would have liked.

Except for this:

  • it has taken me sometime to adapt to some extra teeth added to my own on the lower jaw and I am very conscious of how much ‘saliva’ escapes and am constantly wiping – especially if I am talking…and drinking/eating. But with my husband or by myself I just get on with the ‘tidying up’ and enjoy what I can
  • I know my upper lip is shrinking in. I accept that. But, did you know you cannot ‘blow out the candle on your cake’ unless you get much closer…and I also cannot drink with a straw as there is no vacuum made in my mouth
  • I have a small but significant pain area in my….index left hand finger…the dominant one..the one where I write, draw and play. I have had pain in the tip of it before, as there is significant arthritis in the joint below. But not as bad as this. Our G.P. could not see anything affecting it from the outside, so he advised anti-inflammatories for a few days.
  • both of the above are so small, in the overall scheme of things I know, but I am writing about them (not using the left index finger!) because they have both given me cause for concern today especially.

Out Socially for Lunch.

  • Last Monday I had lunch at Chris O’Brien Lifehouse and was asked what I could eat. I nominated a simple cheese white bread sandwich and a lemon slice I had tried there before. Whilst I did not eat more than half of the cheese sandwich, I managed and did not feel as self-conscious as I thought. I also took my leftovers home! Win.
  • Today, I ventured to a local large club for a Christmas lunch get-t0gether with the Head and Neck Cancer group I am in. It was the first time I have gone out for anything other than coffee and cake. I gave it my best shot. It is a very friendly group and I did get to know people more today in this social setting.
  • What I found though was a reality check for me about my current status in recovery as a Head and Neck cancer patient.
  • Knowing I ‘could’ have taken the easy way out and ordered a safe coffee and cake that I knew I could handle, I decided to join in and actually have lunch! Remember I have only ever eaten a meal at home for over 2 years.
  • At the ordering desk, I asked for a small meal: I could see a baked dinner was on offer and was pretty sure I could manage some meat, potatoes, pumpkin and grave. “No”. Sorry,  we do not do small meals on Saturdays. “Can I have just one slice of meat with a couple of the vegies?” “No”. No offer of a kids’ meal (I think they would have refused that too) so I asked could I have just the potato and pumpkin and gravy. “Yes”.
  • OK. I thought, well this is a lesson. Not everyone ‘gets what they think they can’ and also maybe this establishment does not cater for people with different needs. And, I stayed quiet about it. I was a guest. Everyone else at the table was either way down the cancer recovery trail than me or could find foods to suit them.
  • I could eat one half of each vegetable and then as it takes me a while, it got cold. I had leftovers and asked if I could take them home. “No”.
  • I went and got a coffee later, no cake, chatted some more then drove home and ate….some lunch.

Why Write This?

  • It helps me to process it and maybe others who know what I am talking about can understand
  • The fact that I may have given myself something creative to do over the past 3 days as I needed to has not helped my mood much. I really miss using my finger.
  • I am hopeful, that by being patient and having the meds it will come good. Or I will go back to the G.P.
  • I am concerned I over-expect of myself, so writing this is helping me process
  • Maybe I just needed to ‘get it off my chest’ as they say!
  • It is not a post where I am wanting any sympathy but I did get insight into a world out there today that, in some respects, has no flexibility to meet special needs
  • I also know people face this as a challenge every.single.day
  • I am wondering if my ‘reaction’ was a bit of an over-reaction to a day which I had wanted to go well, and in terms of socialisation it did.
  • But it came up short for me, the head and neck cancer patient getting used to eating again in a regular environment, and so I wonder if I need to be more prepared for the situations I place myself in as I change from ‘no eating’ to ‘limited eating’ to ‘regular eating’.

It feels like two steps forward and one step back….but probably it is more like five steps forward and maybe one step back!

And maybe I will take a little container of my own next time for left-overs!

Thanks for reading!!

Denyse.

P.S. It IS most unusual for me to post on a weekend but for my emotional health I am…and I already feel better for writing it out. THIS is why I blog!!

Linking up with Leanne here for Lovin’ Life on Thursday…sending love to Leanne and her family. xx

 

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November Notes #2. 2018.116.

November Notes #2. 2018.116.

This month, 5 years ago, a unique and amazing event occurred.

I did not know how much this event would affect me 18 months ago.

Chris O’Brien Lifehouse: Comprehensive Cancer Hospital opened in November 2013.

I am incredibly grateful for the vision of both the late Professor Chris O’Brien OAM and his lovely wife Gail, AO.

Chris, who was to die from brain cancer in 2009 before the hospital started, had a vision based on his experience as a Head and Neck surgeon and then a patient with cancer. That there needed to be a place like a ‘one stop shop’ for cancer patients and families as there was so much to manage when someone is diagnosed with cancer without more added to the stress such as visiting as number of different places for treatment.

For Gail, on receipt of her AO said however, the award is a reflection of the community of which she feels lucky to be a part. “I could not be more proud of our independent, benevolent hospital and the care we give our patients,” she says.

Her words are a tremendous reminder to all of us of the importance of Chris O’Brien’s mission. With this award we are encouraged to strive for the best at all times, and to continue to turn your support into a positive force in the fight against cancer.

A chance meeting here I had longed for. I met the late Prof Chris O’Brien, Gail.

Even though I cannot be there for this week of Open Days and Celebration, I am there in spirit.

From my first, scared and very tense visit of over 2.5 hours on Thursday 18 May 2017, through to major surgery on 6 July 2017 and my excellent recovery in ICU and on the wards, through to check-ups and tests and then for more day surgeries on 15 November 2017, 6 February 2018 and 16 May 2018 it is always a rich and inclusive experience to be at Lifehouse. Of course, I have been back for follow-ups and to chat with people I would now call friends. Who knew that would be how I would interact with a hospital and having cancer! Not I!

This one session, held on Monday 5 November when I have to be at Westmead  to see the prosthodontist, features my Head and Neck Surgeon, Professor Jonathan Clark who was trained by Professor Chris O’Brien. How fortunate am I!

Jonathan said ‘he was stoked’ about how my teeth/mouth worked out.

Eventbrite for Organizers's photo.

NOV5

Innovation and technology in cancer surgery

Public

More here about the week of celebration, innovation, care and sharing from Chris O’Brien Lifehouse.
My little collage and tribute to wish Chris O’Brien Lifehouse congratulations on 5 years of helping patients like me!

Do you know of the great work done by the late Professor Chris O’Brien? He became, as his family remembers, the unexpected ‘star’ of the long-running T.V. documentary called R.P.A. That’s short for Royal Prince Alfred – the hospital opposite Chris O’Brien Lifehouse.

Thank you to you all at Lifehouse!

Denyse.

Joining with Leanne who also  knows a lot about the work at Chris O’Brien Lifehouse, here for Lovin Life linky.

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