Tuesday 21st September 2021

Unusual*. Here’s Time Part 2* Instead. 38/51. #LifeThisWeek. 115/2021.

Unusual*. Here’s Time Part 2* Instead. 38/51. #LifeThisWeek. 115/2021.

Rather than go with the word ‘unusual’ for the optional prompt, it’s Part Two: Time…and this is a post from my husband Bernard who recently wrote ‘on prompt’ Time here. 

For those who may need a refresher about Bernard, his first post for the blog is found here. 

Thank you Bernard for offering more of your thoughts, experiences and wisdom.

Can you believe how much TIME had passed since we did this trip back to Tamworth? No, me neither. Enough chit-chat.

Bit early…Celebrating 50 years since we met: October 2020.

 

Part 2: The Time Is NOW

 Thanks for re-joining me in this moment of time.

Time has many metaphors. Lydia talked about the very interesting wheel of time. I like the metaphor that sees time as a never-ending and continual flow of water such as the surf. At any point, by dipping your hand in the water, you experience the drops of water at that time. Those drops represent the moments that you have available to you at that time; the only moments. You notice that they can be very difficult to hold onto and how quickly the water flows on never to be experienced again. They symbolise the ‘ah-hah’ moments in our lives.

 

This experience sets of a “ah-hah’ moment as you realise just how precious and limited your time is.

This really impresses you. It is a lightning strike moment. It is the NOW effect (Goldstein)!

 

Well-known holocaust survivor and psychiatrist Dr Victor Frankl  talked of the space that exists between stimulus and response.

In that space you have the power to choose your response. This enables our personal growth and freedom.

Elisha Goldstein, PhD., talks of this as our NOW time, sometimes described as ‘ah-hah’ moments that can change our lives.

For example, you may hear of a friend’s death.

At this time you are reminded of the love you feel for family.

Or hear that your part of the world is to be shut down because of nasty viral pandemic.

Whatever the stimulus, the NOW space turns our minds and hearts to what we really value in life.

There’s the argument that, in the fullness of time, we will come to realise how it has had the Now Effect of re-focussing us on what we really value.

 

So, what are the possible outcomes of this ‘ah-hah’ moment. Hopefully that:

 

  • You understand your life is a constant stream of stimuli and responses.
  • You realise that, by attending to the present you can take full advantage of the space to change what is not currently working for you in your life.
  • You understand that the significance of your life is not tied to the acquisition of material things and social status. That it is totally about the quality of the relationships you have with other human beings, especially those closest to you.
  • You realise that attending too much to past events is detracting from the present with the added deficit of possibly sending you down those old rabbit holes and causing distress.
  • You realise that, what is now history, is NOW, no longer within your control.
  • You are aware that worrying about what’s going to happen in the future sucks as you cannot control it either.
  • You understand the only moments you can control, albeit, with varying degrees of difficulty, are those that you are living in right NOW.

 

Views on time.

William Penn (founder of Pennsylvania) believed that “ time was what we most want and yet, use worst”.

While I tend to agree, I also believe that it doesn’t have to be that way.

In fact, it’s fair to say that there are many people who would feel a little offended by the statement.

People, such as those who have taken the conscious decision to organise their present moments with a view to living their lives most efficiently and effectively. In so doing, they maximise their feeling of contentment.

 

In all likelihood, these people will tick most of the following boxes:

 

  • They understand and welcome full ownership of their allocation of time.
  • They accept that those moments will contain ups and downs but are happy to take what’s on offer.
  • They also understand that that time is THEIRS to control as they see fit.
  • They look forward to the opportunity to spend more time in the NOW space.
  • When triggers occur they take advantage of that space to respond thoughtfully with generosity of spirit and kindness of heart, rather that react with negative emotion.
  • They understand that the pressure time can create is minimised commensurately by their level of efficiency in the use of their time.
  • They understand the need to take time away from their ‘doing selves’ to just ‘be’. After all, we are, first and foremost, human beings!
  • They understand that their quality of life is enhanced by paying attention to every moment with curiosity, openness and flexibility.
  • They understand that living mindfully in the present is key to enhancing quality of life.

These realisations – ‘ah-hah’ moments – emanate from being present and engaged. They come from seeing ‘doing’ and ‘being’ as mutually important in their lives. Living mindfully in the present is not difficult. However, like learning to play a musical instrument, it requires practice!  Try the exercises below. They just may help.

Being present and engaged exercise …

 

  1. Take thirty seconds to sit back, relax and simply notice all that you can hear. Firstly, focus on your own breathing and any of your movements. Then, expand your awareness to sounds around you appreciating them as a musician appreciates music noticing differences in volume, pitch, rhythms, harmonies, diminuendos and crescendos.

 

  1. Now, take thirty seconds to look around and notice five things that you can see. Notice each image’s shape, colour, texture, shading, shadows, reflections and highlights. Look at each with the curiosity of never having seen it before.

 

  1. Now, sit up straight and notice the position of your body. Push down firmly on the floor, straighten your spine and relax your shoulders. Take thirty seconds to scan your body from head to toe noticing the feeling in each part. Do this with curiosity of a radiologist looking at an x-ray.

 

  1. Finally, take another thirty seconds to flexibly focus your attention, moving from your body to what you can see and then to what you can hear.

 

 Reflect: What did you notice happen? Did you become more present; more aware of your body and surroundings?

 

Some Simple Ways to Be Present

Strategies to practise daily that centre you and connect you with the world around you; especially when you find yourself hooked by thoughts and feelings.

  1. Take Ten Breaths
  • Take ten slow, deep breaths. Focus on completely emptying your lungs as slowly as possible. The, allow them to refill by themselves.
  • Notice the emptying and refilling sensations of your lungs. Notice what happens with your rib cage and shoulders.
  • Try to allow any thoughts to float down the stream or come and go as passing cars.
  • Expand your awareness to simultaneously noticing your breathing and body movements. The, observe all that you can hear, see, smell, touch and feel.
  1. Dropping Anchor
  • Plant your feet into the floor.
  • Push them down noticing the feel of the supportive floor beneath you.
  • Notice the muscle tension in your legs as you push down.
  • Notice what is happening in your whole body.
  • Look around and take in what you can see, hear, where you are and what you’re doing.
  1. Notice Five Things
  • Pause for a moment
  • Look around and note five things you can see.
  • Listen carefully to hear five
  • Note five things that you can feel in contact with your body, e.g. watch against your wrist, trousers against your legs, air touching your face, back against the chair, feet on the floor, etc.
  • Now, do all the above simultaneously.

 

A final offering from one of the very wise Buddhas.

‘Do not dwell in the past, nor to dream of the future but, to concentrate the mind on the present moment’.

What better way to illustrate this than an image from Bernard’s daily practice of adding to a challenging jigsaw puzzle.

Thank you once again for a post which is of great interest to us all. I know I needed that refresher and I promise fewer questions and sharing from my social media while you are mindfully engaged in your jigsaw.

Denyse.

Link Up #258.

Life This Week. Link Up #258.

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, or multiple 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. It’s a kind connection I value as a blogger! 

* 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, sales and any that are overly religious or political or in any way offensive in nature.

Next week’s optional prompt: View 39/51 

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Time. 34/51 #LifeThisWeek. 103/2021.

Time. 34/51 #LifeThisWeek. 103/2021.

Bernard’s 70th Birthday Gift.

By popular demand, today I welcome back my husband Bernard to share his thoughts with us on TIME. Before getting to his words, I want to say this:

  • he is wise
  • he married me (ok, that was mutually wise)
  • he wrote this and I…..
  • did not really understand it
  • he said ….you will need to read to the end to find out.

Thank you Bernard.

This image taken by me, as an example of time. Others’ feet who had gone before me. Little and Big. Last week.

 

Tempus Fugit – Or Does It?

Poor old Father Time … He and we have been butting heads since the moment he was conceived.

From that moment He has copped so much abuse and, yet unaffected, marches inexorably

 

  • I would have finished if only I’d had enough time!!!’

HSC student who has assigned more time to just hanging out when he ought to have been studying.

 

  • ‘Yer never gave me enough time. How’s a bloke supposed to do a thirty minute job in fifteen minutes?’

Angry mature apprentice  reacting to an incompetent boss.

 

  • ‘Every day’s delay costs me money. I need to buy some more time!’

Worried builder under pressure to meet an unrealistic deadline.

 

  • ‘Bein’ in the clink feels like time has gorn to sleep or it’s jus’ standin’ still!’

Woman incarcerated for life for the slaughter of her cheating husband.

 

  • ‘The faster I work the slower my progress seems. It’s driving me cray-cray!’

Anxious dressmaker working on a wedding gown for a precious princess

 

This old guy has not a nasty bone in his poor body.

Since he began interacting with humans, he has been the object of relentless criticism and abuse having been laughed at, jeered at and generally flung dung at for just doing his job.

How would you feel being accused of a robbery that you didn’t commit? Plenty distressed I should venture to say!

However, he is not so pure and innocent as to not seek and gain revenge. Just look above to see examples. Who among us can say that they have not felt ‘time is standing still’ when we can’t wait to see what Santa has bought us? Or, that ‘time flies (tempus fugit)’ when we’re having fun. And, the more fun you have the faster it goes. Correct?

 

We encounter challenges with TIME for we are fallible folk.

We allow our decisions and actions to define whether IT is our enemy or ally.

Whatever the case, we seek to take control of our time as a means of living our own lives and getting the most out of them. Can’t blame us for that!

However, if we are honest – or a member of the Anti-Vaccination Klan – we would admit that attempting to control what is essentially uncontrollable is a fruitless pursuit that can only result in frustration and heartache!

 

As I see it, the problem is a universal one among our varied and extremely complex humankind.

Nobody really understands him –  that includes your author, even after many, many long years of being closely restrained and guided by him! I now know how a dog on a leash feels! He’s way ahead of us.

 

  • He is enigmatic (Batman wouldn’t stand a chance against him)!

 

  • The scientific community would say he’s a fourth dimension.

 

  • We think we see, hear, touch the old guy passing on by and yet, if we had the grave misfortune to have no functioning senses, we would still have a mental experience of IT through our changing thought patterns. Bit spooky that! Perhaps our brains possess a special faculty for processing time.

 

  • Can any of us really declare any greater understanding than he is a measurable perception. That’s why we mere mortals need to personify him.

 

  • It seems this ever-present phenomenon comes in two quite separate perceptions. There is the objective perception, Persona one,  that removes the gender from him and presents as a clinical measurement, informed through clocks, calendars, etc.

 

  • Persona two is our subjective perception that emanates from our need as humans to connect and form a relationship with him. As is our wont, we just have to give time personality, don’t we?

 

  • And, of course, when the world was a place when only the male of the species had the authority and importance (albeit, self-) to make such monumental decisions, he was assigned the male gender. This is a bit like trying to understand the concept of God. She’s always been referred to as masculine. But now we know differently – don’t we girls!

 

So, it seems to me that, in order to change and enhance our relationship with the old bugger, we need to accept that understanding him is a bit out of our reach and probably unnecessary.

I mean, how do we experience something that is odourless, tasteless, invisible, soundless and without substance? You can’t sniff it, lick it, eyeball it, hear it or feel it. That really makes understanding him very challenging.

 

What we can say is that time:

  • stands, beacon-like, as the only perception we cannot perceive through any of our five senses. Yet, our ‘experience’ of time suggests it has an overwhelmingly, controlling presence in and of our miserable lives.

That’s just great, Bernard! Thanks for telling us in a roundabout way that which we already know!

 

The author on left with 2 of 10 male siblings.

The author, 4th from left, back with 11 of 12 siblings.

 

Sorry … Okay, so rather than expending a great deal of precious energy trying to understand something we so obviously can’t, let’s just agree that we experience time through that miraculous organ called the brain.

The brain enables our awareness of time through its relationship with more tangible objects that can be more easily perceived and understood, like the sun! Life in this magical universe is based on relationships.

So, we can get a better appreciation of time by thinking about him in relation to more tangible things. My wife, Denyse, helps me grasp the concept of time better. She, like Time, waits for no-one.

 

A favourite photo of 2 grandkids: siblings.

 

They “tried” to re-create this some years later!

 

And, that’s about as deep as we need to go in this Part One of a two-part post. Seeking to further unravel what it is and how it works is not as valuable as seeking to understand how IT influences our lives and how we can return the favour in order to make our lives keep in time with Time.

 

We look forward to that, Bernard as I noted in the introduction,  …..you said you are none the wiser either about time.

Do leave a comment or even a question for Bernard. He is writing Part Two for the blog in a few weeks.

My image to close: more from the sands of time…  the beach.

Thanks for sharing your words, Bernard.

Denyse.

 

Link Up #254

Life This Week. Link Up #254

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. It’s a kind connection I value as a blogger! 

* 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, sales and any that are overly religious or political or in any way offensive in nature.

Next week’s optional prompt: 35/51 Share Your Snaps #7. 30 Aug. Link Up #255. 

I will be posting Telling My Story May-August 2021…which is mostly via photos too.

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Update: Two Years Since My ‘Weight’ Post.122/2019.

Update:Two Years Since My ‘Weight’ Post.122/2019.

Looking back to the last post I wrote here for 2017 I decided it was time for an update.

Firstly, two years!!

Secondly: Am I brave enough to do this?

Y. E. S.

Some background information. I would urge you to read the post I wrote back in December 2017 as it was the most honest I have been publically about the challenges of being overweight, obese and all the years I did not speak of it.

Two years ago, I was the lightest I had been since…early my  20s (we are talking over 48 years ago).

I was that weight for a few reasons…the major one being oral cancer in my upper mouth requiring everything to be removed and a reconstruction process begun. My ability to eat was severely challenged.

At my ‘weightiest’ 2013, and ‘lowest’ November 2017.

But…from the image of me at my heaviest in 2013 I did start to lose some weight (not by dieting) but by a couple of years of anxiety and Irritable Bowel Syndrome (diarrheoa) from 2014 onwards.

In fact, without trying, as they say, it did come off. I admit, I could not eat much (without having to find a toilet very fast afterwards)….but, in 2015 into 2016 the weight loss whilst gradual did worry me but I was assured by my GP that it was OK. It was my body and the fact I could not eat much.

Interestingly, and I have only recently formed this view, I was on a long-term anti-depressant for at least 10 years before coming off it slowly probably in 2012 -2013 so I may never know if that too played a part in my body holding onto fat.

I also come from a family line of overweight people from both Mum’s and Dad’s relatives.

Why Am I Writing About This Now?

Well. The woman who always saw herself as F A T (and tried to L I K E herself too) is having to come to terms with:

  • how I am,
  • how I may proceed knowing weight has been an issue in my life for a L O N G time…
  • and to see if sharing my update helps not only me but others.

I am pretty sure THIS is a topic that is often OFF-LIMITS.

What’s Happened In The Two Years Since The Last Story?

  • I continue to be a work-in-progress as far as my relationship with my appearance is concerned.
  • I admit it is getting better as I compare the ‘health’ of me now, to the ‘ill-health’ of me as I was recovering from surgeries July 2017 until I got my upper prosthesis in August 2018.
  • I went up a size in some clothes in the past year. I also added around 6 kg in 12-15 months.
  • I refuse to get worn down by the weight I am story again so I am doing my best to look well and feel good too.
  • Since May 2019, the Apple Watch helps keep me honest with myself, via the daily steps and movements records. I do around 6000 most days, sometimes around 5, 500 and other days well into the 7000.
  • The thing is, even with the upper prosthesis, it is still a challenge to find foods that work for me outside the home. 
  • In this collage you will see a plate of baked vegetables. That was all I could see that was suitable on the menu at a local club at a Christmas lunch.
  • This time, when I attend, I am having cake and coffee…because I know I can eat that in public and I will not fill up and I can eat a better meal at home.
  • It really is trial and error. Sometimes the size of a meal stops me. This is OK at home as I can have the other half the next day. Many restaurants do not allow take home bags. I learned that I cannot rely on take-away or restaurant food when I had my first overnight stay in Sydney in June. It surprised me.
  • I want to remain well, comfortable and confident in myself which is why I continue some photos every few days/weeks.
  • These help me SEE that perhaps what I FEEL is wrong…as I often am surprised by my image.
  • I do admit now, that the photos I see of me post-cancer surgeries are not those of a healthy woman (albeit thinner than I had been for decades) so to want to be her again is not to be well.

More musings….

As I said above, I remain a work-in-progress. I was/can still be a comfort eater but this is what has changed.

  • I know about my cravings.
  • I know that cravings can go, given the chance, just like feelings change too.
  • I understand myself so much better now when I start thinking about food I might want because I ask myself “what is it that is troubling me?”

In the past, I would not have even gone that far. I would have scoffed the chips, bitten into the crunchy foods and allowed the smooth chocolate to melt in my mouth. I do not eat much at all like this any more. I do still eat something for texture or taste but my full limits have changed as has my mouth so far less is consumed.

Dealing with what is troubling me is the big shift.

  • I can speak to my husband about it,
  • write in my journal,
  • go outside,
  • blog,
  • do some art…
  • anything to change the situation and thoughts…and guess what happens most often..the craving has moved on.

This knowledge for me has been life-changing.

Here is where I learned about it and still continue to learn. Of course, my self-talk is probably one of my better teachers…as long as I remember the newer approaches..and yes, I mostly do. In fact, I even ask myself questions to check.

  • Is this what I really want now?
  • Am I actually needing to…(insert what I might do other than soothe with food.

I am glad I decided to write this up. I wasn’t sure. However honest me could not let the story of what’s happened just sit from where it was 2 years ago. An update was the way to go as so much has changed for me in terms of understanding my insides (brain) and the outsides (body) and the connections.

How about you?

How are you at understanding yourself in terms of appearance?

It’s a tricky thing. I get that too.

Denyse.

Joining each Wednesday with Sue and Leanne here for Mid Life Share the Love Linky.

On Thursdays I link here for Lovin Life with Leanne and friends and on Fridays, it’s Open Slather here with Alicia.

This is the ‘last post’ on a Wednesday in 2019…and will be returning on 8 January 2020.. See you then. Happy Festive Season everyone:

Copyright © 2019 denysewhelan.com.au – All rights reserved.

 

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Self-Care Stories #6. 42/51#LifeThisWeek. 105/2019.

Self-Care Stories #6. 42/51#LifeThisWeek. 105/2019.

In the past of this series I have written about daily routines, helpful strategies and learning about self-care for me. I have referenced people who have helped me in my quest. Some of my posts can be found here, here and here.

This week’s is different.

Read on to see why.

Where Do I Start?

Not at the beginning in this case! I start with what I think was/is for me a big issue in terms of self-care.

Believing the stories I am telling myself even when there is no evidence nor reason.

What Do I Mean By That?

I’ve been making big progress in terms of my on-going wellness physically and emotionally, particularly related to head and neck cancer, and in every day life practices ….or so I thought until last week.

On Wednesday last week I had the worst headache I had ever experienced since getting migraines waaay back in my 30s and 40s. I woke with it and it was unrelenting. I ended up, most unusually for me, vomiting once. I did not want to eat, felt nauseous, nothing appealed and I spent a miserable night tossing and turning because “I was making up so many stories about what I HAD DONE to cause this to MYSELF”

On Thursday it has settled more but my mind continued to play that above “rubbish” in my head. In fact, my husband and a friend said “maybe you have a virus, or even the flu”. No, not me. I couldn’t accept that. Again….”what did I do to get this?”

On Friday, bit better but not right 100%, another example of my story-telling which came to mind. When I felt I needed to use a toilet quickly because of symptoms of IBS. I “blamed” my inability to manage my emotions and spoke to myself harshly. I won’t repeat the words.

but by the end of that Friday I was so, so ready to

SHUT

THAT

VOICE

UP

and then this is what happened.

  • I felt the feelings and did not like them but I did know why they stayed.
  • I had felt ashamed to admit my health vulnerabilities.
  • I used to think I did have something wrong (and that is true) but until I had a diagnosis from my GP or someone with a medical qualification I hid behind my stress.
  • It has been like this for me probably since I was young. No-one (as I see it) in the 1950s and 1960s brought their kids up to speak of emotions and be able to be heard. In fact, I don’t think our generation did a good job either. We may have been more understanding but I guess “we wanted a happy, not crying kid” too.
  • I made an appointment to see my GP next week. I then examined how my physical symptoms were and they matched either a virus or a form of the flu. At the time of writing they are still there but I am managing them better.
  • I chose to treat myself with compassion.
  • I told myself I had not CAUSED anything to happen. I relaxed and took care of myself with food and water and kind inner conversation.
  • But wait, there is more.
  • You see, the old old issue for me of shame and embarrassment around my bowel habits continued to be one where I took myself to task often. Add to this a rectocele I also need to manage and I started to ‘hate needing to go to the toilet or find one wherever I was’ and I blamed me.
  • I knew though that I needed to change that darned voice and SOON.
  • I did.
  • I wrote about it. In my on-line journal. It also helped to read it aloud to my husband.
  • It relieved my stress to such a level by that Friday night and into Saturday (time of writing) I have been:

A very pleasant person to be and to live with.

What a significant self-care story this turned out to be.

But of course, you just can’t turn a belief on its head like that…because our minds like to play with us.

IF I had not already done a lot of self-education about self-compassion, having courage and learning from Brene Brown, Kristin Neff and My Calm Meditation AND all the courses I have done, including seeing a psychologist ….and having a trained counsellor husband who has, ahem, talked me down from quite few heights of emotion…then I could not have done this.

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”

Brené Brown, The Gifts of Imperfection

Self-compassion involves acting the same way towards yourself when you are having a difficult time, fail, or notice something you don’t like about yourself. Instead of just ignoring your pain with a “stiff upper lip” mentality, you stop to tell yourself “this is really difficult right now,” how can I comfort and care for myself in this moment?

Kristin Neff, Self-Compassion.

So, I thank you for reading this far. I have felt a bit vulnerable in owning up to what was keeping me stressed in some areas of my physical health but I have done it.

Two images with quotes which have helped me grow as a person are shared here:

Denyse.

P.S. The story does not stop here. No. Unless I continue to practise and recognise my self-care and compassion, then my negative/default mind (it’s how all of our brains operate) will revert pretty darned smart. So, I will return to this book, where I began completing the pages. Sometimes it IS hard to look at yourself with a reality check. But I know this helps me. Onward….and away from old thoughts, memories of shame and embarrassment.

This is the book I use.

 

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: 43/51 Your Favourite Book As a Child 28/10/19

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Musings On 2 Years Of Living As A Head & Neck Cancer Patient. 56/2019.

Musings On 2 Years Of Living As A Head & Neck Cancer Patient. 56/2019.

I have written frequently over the last two years about my diagnosis with a rare head and neck cancer. You can find the many posts, and ones where I have shared on other sites here. I keep the posts at the top of my blog’s home page to help any other head and neck cancer patients and their families.

Musing One.

What has happened this month?

I am a memory-keeper and in some instances that can be good, others memories remind me of not-so-good times. As May 2019 drew closer, so did the second anniversary of my head and neck cancer diagnosis. I sensed that I needed to mark it in some ways, and that was through writing starting even before May. I also used my creative side and constructed a big mandala documenting every day since diagnosis.

I did these to help me through and to show, when I shared, what the experience was like for me.

Thanks to this blog, and a facebook page along with instagram I got some caring comments and support on-line which I have always found helpful.

What I have also found is that I am the only person who really remembers the lead-up to that morning on Wednesday 17 May ’17 and then how it affected me afterwards.

I guess, “my” cancer is like any life experience that we have as an individual. It’s mine. Yes, I share. (some might think over-share: sorry!) And my dear husband “knows” the stories as he has experienced them alongside me. However, he is  was my carer and now that I am as independent as I can be, I am “the loved wife” in our long marriage. That’s great.

On my 69th Birthday 2018

Musing Two.

How has the lead-up to the anniversary been?

I thought it was good. It was like box-ticking and I felt good doing that.

Remembering what I experienced with the tests before the diagnosis. Ok. I remembered but did not over-think it.

The weather and the dates changing on the calendar also reminded me but again, I was feeling pretty good.

I had two hurdles, if you will, and they were the visit to my Prosthodontist on May 13 and to my Head and Neck surgeon on May 21. These were of concern in a way because at my last visits to each (three months earlier) there was talk of a possible fifth surgery to ‘fill out the top of my mouth.

I can tell you now, dear reader, the prospect of the surgery did not concern me nearly as much as the recovery from it…the LONG time with no top teeth and then more time with getting the mouth healed enough for a prosthesis. I have just had 8 delightful months being able to EAT again and that would be tough. Of course, the smile would change…ok.

December ’18

Musing Three.

What actually eventuated.

Visit to the Prosthodontist.

Dr Deshpande asked me about pain levels. Pain comes and goes in my mouth where it has all been reconstructed and I told him a few weeks earlier it was significant. However, as it settled I did not need to call him. I was much more confident about those calls than I ever was in 2018. He examined the upper prosthesis, the gums, and where the abutments are in the gums. Yes, there was some tiny more skin growth but nothing to be concerned about at this stage.He did a small clean around the abutments and told me what I had been doing every day was going very well and the gums were in good health. Phew. Using the waterpik twice a day was a key element. He showed me around the inside of my mouth and his nurse videoed it as best she could as he explained it all. He is so patient and very thorough and professional. After taking lots of close-ups inside my mouth he told me his view that my surgeon would be unlikely to want to do more re-construction because the skin area of concern back in January/February had not changed. Back for my check up 16 July.

Fistbump! Photo of “us” knowing each other in this professional setting for 2 years.

 

Visit to the Head and Neck Surgical Team.

This was on Tuesday 21 May. Both he and his nurse were delighted to see me and it wasn’t just because I brought cupcakes I had made. They can see a different me emerge I guess, and someone who has taken on an Ambassador role to work towards helping head and neck cancer awareness and both Professor Clark and Sr Froggatt are foundation members of Beyond Five. Again my mouth was examined and as I recalled the words of my last visit “I am a cancer doctor, so I AM looking for cancer” and it all seemed fine I was OK. He decided any choice about more surgery would be determined by what happens inside the mouth. “Could get worse, better or stay the same”. And now would not be in my best interests to do this. Phew. However, I also learned that the interval till my next visit is 4 months, not 6. And that I will require some CT scans as baseline ones. This was a wee bit threatening to my equilibrium but as I do, I went along following instructions. Before I left, I asked some questions about my mouth: here are the answers.

  1. the tightness will remain up top as so much more has been added for the re-construction than a normal mouth would have
  2. sniffing is part and parcel of having the nasal area invaded quite a few times…sniff and manage!
  3. dry top lip probably from not being able to seal off my mouth
  4. need for a new upper prosthesis? “If it ain’t broke, you don’t fix”

Thanks Cate for all your reassurance and hugs too!

Then there was this. “A Photo with Denyse with her Badge on.”

Hugs and farewells and I will be back to Chris O’Brien Lifehouse to have a check up on September 24.

Musing Four.

When having cancer is a reality that I am reminded of every time I visit Sydney for cancer treatments.

Westmead.

Where I see the prosthodontist. I lived in western Sydney and had never been to the Dental part of the hospital until May 24 2017. Since then I have been 37 times. Each time could be lengthy and required patience from me in spades. However, there were some visits that were emotionally bumpy and Dr D and O handled my state of health brilliantly. When I was there recently, the lady of the front desk said “Denyse, we are like family”.

That was lovely. I would not have met so many kind people there without a rare mouth cancer, and where the expertise was right there. Someone working alongside my surgeon in each surgery. Wow. Talk about fortunate.

Camperdown.

Specifically Chris O’Brien Lifehouse, slap back in the midst of Sydney’s major health precinct on Missenden Road. Sydney University on one side, Royal Prince Alfred on the other, and new buildings mixed with the historical on either side.

This is where I first met my professional team one day after being told I had cancer.

I had my husband with me of course. He was (and is) the patient man by my side. So, I recall, being there for the first time, seeing this amazing purpose-built cancer centre which had come from the vision of Dr Chris O’Brien who was on our telly as part of the reality series R.P.A. Such a professional and friendly head and neck surgeon with heart. I sensed I was in the right place WITH the right people straight away. Finding out later that my surgeon had trained under Chris O’Brien made me feel even better about what was ahead. And so Lifehouse was where I had the first BIG surgery and stayed for 10 days in July 2017, then further day surgeries in November 2017, February 2018 and May 2018. Follow ups too mean I have been there 12 times.

Musing Five.

IF I did not have cancer here’s what I may have missed in my life….

  1. the opportunity to take on new information and run with it. I learned I can deal with more than I ever imagined.
  2. getting to know people from the health fields who amaze me with their professionalism, the wealth of knowledge, their compassion, their skills and their genuine humanity
  3. being able to recover as quickly as I did from the decline in my emotional health which was ‘strangling my enjoyment of life’ from 2014 to mid 2017
  4. meeting people from all walks of life: in real life and on-line, a facebook group in New Zealand is an amazing space,  who have also been diagnosed with head and neck cancers: Yet, I still have not met anyone that has had mine exactly: Squamous Cell Carcinoma of the Upper Gums & under Top Lip: no risk factors of smoking or alcohol: rare of rare ME.
  5. the many ways in which I could grow and change to become ‘the Denyse’ I wanted and needed to be again: strong, positive, confident
  6. sharing my story of this cancer and being able to offer help when asked to others with head and neck cancers
  7. becoming someone with a role to play in terms of education and awareness of head and neck cancers working with Beyond Five. The charity to support patients, carers and family members with information, videos, print-outs and connections to local support groups as those affected with head and neck cancer need support “beyond five” years of the traditional
  8. to take more time to actually enjoy what is rather than be longing for what’s next. I add, this is me as a definite “w-i-p” because it requires constant reminding from me to me
  9. a greater appreciation for those who have been part of my life and have added their emotional and other support to me over the internet, phonecalls and visits, along with cards and gifts. I have been spoiled!
  10. to take what I have experienced and give back. I will return to Chris O’Brien Lifehouse on Monday 3 June 2019 to be in the audience to listen to my professional head and neck cancer team talk of what working with and learning from Chris O’Brien was like. This week marks 10 years since his early death due to cancer.
  11. to look at the posters and information about how Chris O’Brien Lifehouse came into being and thank the governments of the day for helping it happen. Chris was well enough to know it would be constructed but his wife Gail took over his role after his sad demise.
  12. becoming part of the community at Chris O’Brien Lifehouse even though I am not there much physically, I donate materials to the art program, I wrote a blog post for their website and I have been in a couple of other site’s telling my story including Beyond Five.

 

Musing Six.

Blogging & helping others works for me to manage my emotions relating to cancer.

I have a great group of on-line supporters who have helped carry me through this story or journey as I call it. I prefer not to use war-words like warrior and ‘beating cancer’ as I also know not everyone does. I have already known of two young women die in the past two months from cancer. Not head and neck but cancer. So it does ache to even talk about that. I know though that we have many people helping with fund-raising to support cancer research and I won’t name any others than these as they are close to my cancer-heart.

The Big Hug Box. I started making some bookmarks for Lisa to include in the Big Hug box back in 2018 and loved contributing to her charity started because as a young mum just diagnosed herself with a rare cancer, she knew patients like her could use a BIG hug. For more about Lisa’s work go here.

Beyond Five. For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting. Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

Writing my story has helped me manage emotions, experiences and responses well. I am indeed going well two years AFTER my cancer diagnosis. Thank you for being here to read about it.

Denyse.

 

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Cancer Is Always ‘There’. 2018.84

Cancer Is Always ‘There’. 2018.84

It is rare these days for me to compose a post and publish it immediately. I have planned posts, scheduled posts and draft posts. Today is different.

I need to write out my truth and my feelings based on recent, significant events for me: a Cancer Patient.

What Do I Mean “Cancer is always ‘there’?”

  • Once diagnosed with cancer I held onto the belief, rightly or wrongly, that my surgery would eliminate the cancer in my upper gums and behind one side of my top lip.
  • It did. In terms of reports back from the many lab results, biopsies at the time of the major surgery in July 2017, and the reassurances from my professional team.
  • However, I do, like many others who have been diagnosed with cancer, “know” that it could come back in another way or form….and also that the reason for my four surgeries has been because I had/have cancer.
  • The many (22 now) visits to Westmead Oral Sciences to have treatments and checks for the progress of my mouth healing, stent wearing and health of my gums is because of cancer.
  • This came home to me yesterday, ONE week after re-gaining what I thought I wanted most: my smile, when it appears that the top lip (cancer site) is tightening again and I need to do some exercises to help it gain more suppleness.
  • There I was, thinking (albeit naively) that the cancer thing was almost gone.
  • Nope, no and not at all really. Check ups, doctor’s visits, mouth checks …..it is not gone nor over by a long way.

Explaining My Mixed Emotions and Responses/Reactions via My Photos.

 

Thank you for reading.
I wonder if any readers who have cancer/had cancer might identify with this.
I am a relative newbie (only 15+ months since diagnosis) yet it feels like I have had cancer forever.
I guess I do.

Cancer is always ‘there’.

Denyse.

Linking with Sue and Leanne here for MidLife Share The Love linky.

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Reality Bites. Part One. 2017.96.

Reality Bites.Part One. 2017.96.

Today, 6 August 2017, as I write, it is exactly ONE month since my cancer surgery on 6 July 2017.

I am calling this post ‘Reality Bites’ as the consequences of the diagnosis of cancer, the pre-op visits and treatments and then the ultimate ‘reality’…. the complex and major surgery in my mouth and on my right leg have truly ‘bitten’.

I am writing it out so I can honestly tell you, my readers, that I am NOT doing so well in that emotional sphere at the moment.

This is despite my previous posts where I appeared to be going so well. I was/am in a physical sense.

Readers who want to read more about what this surgery was about can go here:

my diagnosis….my updatesmy grateful post #1my grateful post #2.

Reality has bitten in the form of a heightened emotional response (and IBS frequency) to what has happened to me…my feelings are catching up with what I have been through – from date of diagnosis 17.5.17 till now. (less than 3 months!)

Here is how it is for me NOW as I recall memories that are not great and are affecting me somewhat even though I know things will get better over time.

  • Wow, it’s been one month since the huge operation which I  knew was going to (hopefully) take all of the cancer out of my mouth and leave me with a reconstructed mouth using tissue and bone from my right leg.
  • I recall my feelings of being totally overwhelmed when the surgeons began to describe how they would ‘fix’ this cancer in my mouth only one day after I found out I HAVE cancer.
  • I got through the drive home after that with my hub on my least favourite road (M1) as I tried to wrestle the past 24-48 hours into some sort of sense for me. It was surreal.
  • At home I ‘tried’ to go on with ‘normal life’ but that is impossible when the word C A N C E R shone like a red light in my mind constantly.

“last smiles” were/are treasured but under those false teeth it’s cancer

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.
  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?
  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.
  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.
  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.
  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.
  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 
  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 
  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 
  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

I’ve written two posts (see above) which described how things went for me in hospital so I will not outline any more here today.

The next post will outline what happened emotionally in hospital and then my homecoming. I have chosen to write about it all from an emotional perspective as life as a cancer patient post-surgery is affecting me and writing it out is to help me.

At home in my first weeks.

Have you had cancer?

Do you have an experience of having a life-changing event for you where things caught up with you later on?

I appreciate your comments and support. I am not looking to ‘get advice’ as I think that in recognising what is happening to me and letting it happen is probably the healthiest way I know how.

Thank you for your support!

Denyse.

Joining with Kylie and friends here for I Blog On Tuesdays and here with Leanne and friends on Thursday for Lovin’ Life linky.

 

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What’s in a word? Cancer. 2017.82.

What’s in a word? Cancer. 2017.82.

Since I heard the word, cancer, to describe what had been found via pathology from the biopsied tissue from my gums, I have seen it and heard it everywhere. However, I think, it’s like when I  first become pregnant, I saw other pregnant women everywhere.

It’s more noticeable because it affects ME. So, whilst there is still no word (ha!) on the exact  date for my cancer surgery, I thought it timely to write a post.

I have been incredibly well-supported already by those in my friendship realm here in the blogging world and elsewhere.

Each has been from someone who has had cancer, knows someone with cancer, and is currently being treated for cancer.

I read recently  that 1 in 2 of us will have cancer. Wow!

My family of course have expressed their concern and care for me. I have been visited by almost all of the immediate family and that has been lovely. What I have found too is the outstretching of hands (figuratively) of so many is helpful and reassuring which is why I blog about it.

Here’s what I wanted to share briefly:

I had been on a roller-coaster of emotions ANYWAY before I was diagnosed with cancer, so to add cancer to the mix has raised those anxious thoughts of mine to greater levels. But, I am thankful that I was already doing much to help myself with anxiety and adjusting to our new way of life. Meditation, being more mindful, walking, being outdoors, blogging, enjoying some Netflix with my husband, going to the beach, taking photos, supportive health professionals  and generally engaging on social media are already integrated into my life. So, they have become tools for managing my thoughts about cancer too. 

Thank you to the many people who have sent me messages, cards and let me know that I am in their prayers, thoughts and hearts.

“We are all just walking each other home” Ram Dass.

It is very humbling to have such a lovely group of you with me.

Most of all, I thank my husband who is already my finest supporter and rock! He will be with me as much as he can within the first days in hospital and I know, not matter what state of grogginess I may be in, he will be within arms reach for me. That IS love. I am so lucky.

Thank you everyone. I hope that if the word ‘cancer’ is part of your world by association or for you that you too will be cared for and about like I have been. I am blessed. This image is one I am using when I need to take myself to a more enjoyable mindful place. Enjoy!

I am grateful every day.

UPDATED: About my present state of health. 

When I wrote this post I thought I was managing myself quite well. Since then, I have had some pretty horrid days (and nights) where I have become fearful, panicked, and so vulnerable I wanted to go into a corner and hide and never come out.

I am shit-scared right now.

I am worried about losing what I valued: my mouth where I speak, eat, share my emotions and smile. It has been days of crying uncontrollably, being held until I calm down (thank you dear B) and taking some valium (which I don’t really want to) and letting out the fears  in words between the sobs. 

I fear: the loss of ability to use my mouth for at least 7-10 days, have a naso-gastric feeding tube down my throat for those days, having the skin/flesh/bone from my right leg inside my mouth after 3/4 of my upper jaw/palate as been removed. Dealing with the not being in control.

I am, as I write, unable to really express what it means to be facing this loss of control of my body. I will be in ICU to start and may even have a tracheostomy to start if the mouth is too swollen. This is very scary to me, and I am admitting it now.

For me to admit how vulnerable I feel right now is to say “I cannot do this without help”. My husband reassures me he will be there as much as possible, and given how I will look and be, he will be my only visitor until I give any indication I can see others. I am facing the unknown and that as we know is the scariest place to be. I will be losing my smile….for more than a while. Possible 3-4 months until my upper jaw recovers.

Have you faced major surgery of any kind for cancer and other reasons?

How did you deal with it?

I am so wanting some answers that help me know – in the pre-surgery phase that I am not alone in my fears. 

Thank you for reading this far! I appreciate that very much.

Denyse.

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

Linking here on Thursday with Leanne and friends for Lovin’ Life.

 

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