Saturday 19th October 2019

What Is ‘Dress With Purpose’? 41/51. #LifeThisWeek. 103/2019.

What Is ‘Dress With Purpose’? 41/51. #LifeThisWeek. 103/2019.

Thank you Maria: Linky Is Open again!!

When you have a reason to get up each day, for example, going to work, then you dress with purpose. Whatever your employment conditions require.

This is likely to be less so  of course on holidays and weekends when you determine this for yourself. And yes, it could be PJs all day!But, when you retire then what happens? It takes an adjustment for you that is for sure.

One such adjustment can be about what to wear when there is no longer a job or career calling you.

PJs all day? For me, no. But then again, I did get caught up as a somewhat sad soul (and then cancer arrived) in actually not caring about my physical appearance for some time.

This was 30.11.2016. My 67th Birthday. I MADE myself dress in something bright & wear makeup and a smile.

For more of the back story, I lost a lot of weight thanks to anxiety and IBS. It was over time and no-one was concerned about the effect of it except me. I actually thought it might mean I had cancer. Oh, wait. I did..eventually found that out. It’s a bit more complex than weight/size issues this post of mine. Firstly I had to change my belief system of being worthy of dressing well. And then, over time as I did, I knew I literally needed new clothes. The old and baggy ones did nothing for my morale nor my outside appearance.

My Head and Neck Cancer diagnosis took precedence of “everything” really, although I recall needing to accept I literally had to buy lots of night attire and underwear that actually fitted even though my appearance was the last thing I considered in those months from May 2017 until July 2017. Once I was back home, for the months of July, August and September I was getting dressed each day but it was usually a tee shirt & comfy beach-pants (I had my leg in a boot for weeks and it still needed treatments from a community Nurse for 3 months.

My initial reasons for “Dressing with Purpose”.

  • By October 2017 I was far more independent physically after the gruelling time since diagnosis and major reconstructive surgery so decided I needed a challenge of sorts.
  • I’d been following “outfit of the day” for sometime and various aged friends took part in this on Instagram daily. I got the bug…to show what I looked like and to be proud (as I could anyway with no top teeth) of my appearance from now.
  • I thought I would do this every day till I turned 68. I didn’t. It lasted a lot longer than that.
  • It truly was fun but it was more than that, I MADE myself do this because I NEEDED to have a routine and dressing with purpose and going out solo for a coffee (with my art journal) became it.
  • My husband was happy to see me well and agreed to be my Instagram photographer.
  • There are stories about it here, here and here.

Now Here’s Why I Continue to “Dress with Purpose”.

  • I need to do this.
  • Recently I was feeling a bit concerned about ‘my cancer returning’ and sad…but past me who would have cried and stayed home said “NO”. I am telling myself this is what I do and off I went to the local shops, dressed with purpose, had my coffee, and wrote about it in my art journal.
  • I have a routine that is not really strict but I need some structure in my day.
  • I no longer want to ‘show off my new clothes’ because there are not many these days. This does not mean empty wardrobes people. Full!
  • I do want to show me (and anyone who remains interested) that my appearance is OK.
  • know that I have gained weight since I got my upper prosthesis in Aug 2018 but also that this has been healthy for me
  • I strive to remember that…above: It is for my health. As a long-time body critic this is taking reminders to me every day!
  • I feel better for getting out each day, even if it is just to get the paper, have a coffee, people watch and play in my art journal
  • I enjoy moving my body more in the clothes and good sneakers I have so it is not an effort to do around the recommended for me steps: 6K-7K
  • I like looking at me in the mirror and liking her more than ever.
  • I do have a photo taken from time to time but have stopped the daily one ages ago.

 

 

 

This post is also a reminder to me of how far I have come post cancer.

Go me. As they say.

I do try to encourage myself as well as others! Someone told me the other day I am an ‘encourager’ and I liked that.

So, do you dress with purpose?

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: 42/51 “Self Care Stories” 21/10/19

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My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

Spring is here.

In Australia and the rest of the Southern Hemisphere. I am glad to have cool-ish evenings and lovely days but, I know from experience, the lengthening of days will bring more heat and then I will be complaining a bit as I can when the heat is on!

True to my word of needing AND wanting to get out and about I ventured to the local beach nearest to us on Friday only to find it closed off due to sand erosion (climate change, anyone??) so I took another way, up the hill then  down to arrive at the sand and gentle waves. Cold water but worth it for the paddle.

Head and Neck Cancer Check.

When head and neck cancer arrives in your life, you are taken into new and different worlds. Fortunately my ventures have been to improve my life’s quality, living with a rare cancer, and meeting many professionals who have contributed to my well-being since my diagnosis on 17 May 2017.

On Tuesday 17 September, a very rainy day, I drove to Westmead Oral Sciences for my 38th treatment with my prosthodontist and he could not have been more pleased with how well I am maintaining the skin (grafted) around the abutments (added implants to my ‘jaw from my leg’) and we both cheered when I told him I am for the most part pain free in the area that had been bothering me for months. Yay.

On Tuesday 24 September, this time on a sunny day, I arrived at Chris O’Brien Lifehouse carrying cards of appreciation and little cupcake packs for my professional team. These people have cared for and about me for over 2 years now and my relationship is close and warm as they are when they note my progress. I enjoyed a catch-up with Nadia from Beyond Five with a coffee as well, and then to Clinic on 2nd level for my cancer check. First seen by Cate, and then Jonathan and the consensus was I am doing so well, no return till early March 2020. As I finished up, I asked Jonathan how I was going in recovery and his words made me smile:  “Denyse, you are our poster girl in recovery”. I left feeling very well indeed. And the cupcakes and cards were appreciated.

There’s More To Life Than Cancer.

I could not be more appreciative of how well my cancer recovery is going and as a result, I am expanding my world and re-connecting where I could not before as recovery, treatments, resting, driving to and from Sydney took their toll.

On Tuesday, after being to my head and neck check up, I drove out to North Kellyville P.S. to see the granddaughter’s school’s inaugural Art Exhibition. What a joy it was to be there and I couldn’t resist this photo. It actually summed up just how well I felt that day!

Gratitude – for my connections found through having head and neck cancer.

And then this happened.

Those of you who have been reading my head and neck cancer posts (see here for access) will know I have NEVER found another person with cancer “like mine”. My professor had told me I was “rare of rare” in terms of risk factors and so I kind of learned to understand that was it. Until I was contacted, firstly by a mother, then by her son. This man is another head and neck cancer patient. They had found my story on the Beyond Five site after his diagnosis in 2018. It turned out, once I was contacted, he was not only living in Sydney but we shared the same professional surgical team, the same comprehensive cancer hospital and he also attended Westmead Oral Sciences.

This person, who is quite happy to be found on instagram here, has a more complex and serious version of head and neck cancer than mine. He and I connected via social media and then personally when we got together for a coffee at a place a bit up the coast for him, and down the coast for me.

Our talking and sharing was so good. I know for me, re-telling some of my story was good but I think, for him listening to the ways in which recovery occurred for me may have helped. Nevertheless he has a way to go right now and I am full of admiration for his attitude and his patience. We are both very keen to continue to spread the head and neck cancer message.

Thank you Fergus!

Time for change. Transitions. 

I’ve written before about the transitions in my life (retirement, leaving Sydney, family etc) before and I am now, 2 years 4 months post head and neck cancer diagnosis recognising a shift in my emotions, signalling change. Even good change has its downside. I am a little more emotional as I consider how far I have come. I am also feeling the feels about ageing…and turning 70 in 2 months. Our twosome relationship in our marriage continues to be strong as we navigate life at ‘this end’ together. Family is less connected to us now as caring is no longer required and they are all just about grown up.

It’s of great interest to me to know how quickly the changes occur. Sometimes we may blink and miss them. On the weekend, our daughter and 3 of her children came for Saturday lunch. We even managed some fun games outside. I admit “we” the oldies got tired very quickly. We also did a a bit of a nostalgic look at one’s growing up years. She will be 23 later this year Yikes! Where is that time thing going? Nevertheless, my afternoon’s phone call from my 96-next-January-Dad reminded me we are all going OK.

How is Spring going for you?

Had you heard about head and neck cancer before my diagnosis?

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: 40/51 Share Your Snaps #8. 7/10/19

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My First Year With Teeth*! 33/51 #LifeThisWeek. 87/2019.

My First Year With Teeth*! 33/51 #LifeThisWeek. 87/2019.

So, this is NOT the optional prompt of Coffee, Tea or What…but for the record it is always this:

Small Latte, extra shot…in a glass. Every.Single.Day.

Ahhh. My habit that is calming and gives me time-out each day.

Now, for the real reason of this post.

One year ago, on 21 August 2018 the prosthodontist from Westmead Oral Sciences, Dr Deshpande issued me with my upper prosthesis, i.e. teeth. They have been ‘part’ of my upper reconstructed mouth now for a year.

Wow.

From no teeth to teeth day

For the previous months: mid May till then, I had so many visits to him – a 2 hour drive there and back – for the measuring, the adjusting, the listening to me whinge about the discomfort of the stent (see below) and sitting/lying in a dental chair for up to 4 hours….tiring and I know it tested my patience. That was when I discovered having earbuds in and listening to an audio book whilst he and Ofelia had their hands in or near my mouth was less confronting. Kind and professional as they are, it is still hard. Do you know what I mean?

My oh so important and wonderful professional team.

What I have learned about having “teeth” (upper prosthesis) up top:

  • it is nothing like the feel of natural teeth (and it’s been a while since I had them anyway)
  • the reason is that it is a device made from hard plastic (probably a better name for it) that is literally screwed into the 3 of 5 abutments I have placed in the ‘new jaw’ from my leg
  • it “looks” terrific. There is no doubt about that. I have a SMILE back.
  • it cannot be felt by me so I do have to think about how I eat. For example, putting a piece of food into my mouth I need to guide it towards the lower part of my mouth and tongue where I have all the natural sensations of taste and texture.
  • there is none on the ‘roof’ or re-constructed palate or the teeth themselves.
  • I can, however, acutely feel foods with some sharp edges (a salada cracker) and something that is savoury .e.g. vegemite which the skin will ‘scream’ a little bit about.
  • it turns out to be an ‘ideal’ way to maintain weight…seriously. I have gained a few kilos in a year but as my mouth is uncomfortable  to eat a lot, it’s a minimiser. I am careful to add protein of some kind into my eating every day.

I am incredibly grateful. Every. Single. Day. for how the marvels of modern medical, surgical and restorative dentistry via my amazing professional team, have given me a life without cancer, teeth that can chew and bite, a mouth that can close, lips (one is numb) that can kiss, and a voice which has not been compromised at all, except for a mildish lisp.

These images tell the story in collage form. Like most of my posts about head and neck cancer, the images also tell my story.

 

 

Surgery One. 6.7.17.

 

Surgery Two.15.11.17.

 

Surgery Three. 7.2.18.

 

Surgery Four. 16.5.18.

 

Between Surgery 4 & Upper Prosthesis Affixed.

 

A Year of Smiles….

Thank you for sharing this with me as a reader and commenter here. I am so fortunate to have a warm and kind community who is part of my blogging world. In fact, Kirsten who was a Woman of Courage recently commented on the community here. How lovely.

Today is the last post about my cancer story. It is as a good time as any to stop posting as I am doing well. I have covered all of what is important to me in terms of updates, announcements about how the surgeries and treatments are going….and of course, important for me, the record-keeper, is the recognition of my progress which I do based on dates. As Wednesday 21 August 2019 is the first anniversary of my ‘teeth’ I decided this can be the final post…until there may be a need for an update. Please do know how much it means to me to have such amazing ‘cheerleaders’ along with me. It helps….always helps to know I am thought about.

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!

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My Worst Job. 26/51. #LifeThisWeek. 73/2019.

My Worst Job. 26/51. #LifeThisWeek. 73/2019.

There has not been a worst job for me. However, there have been aspects of some jobs that have not been great. Here they are:

Babysitter.

When the parents promise to pay you a great amount (I’m a teen, it’s most welcome) and then that does not quite add up to the amount I thought.

Shop Assistant.

In the jewellery’s shop where I worked during school holidays (post here) the worst part was cleaning the Wedgewood. I cannot stand the feel of it. It was rough but not nice. I hated being asked ‘to clean the Wedgewood, please Denyse.’ Shudder.

Teacher.

When a  child vomits. The end.  OK. I could be compassionate and I was but OMG I do not deal with the voms at all. Even with myself.

Principal.

Being responsible to everyone and for everyone and everything…

100% hard yards at times…

because “you’re the principal” as I was told once..

YOU know what to do. Umm. Human being too.

Mother.

It is not a fair job nor one with endless rewards.

It is, in fact, one where you (me) sacrifice your interests, time, love, energy, sleep and more for someone who has become your child.

For a very long time…depending on when he/she leaves home of course!

However, I mindful that not everyone who wants to be a mother gets to be, so I will add my gratitude that I did get to be a mum.

Volunteer.*

Retired people are encouraged to put their work life skills and experience towards helping others and organisations as a volunteer.

I did this on a number of occasions over 10 years : helping a lady, in her house,  who had very little English to speak and understand basic English, answering telephones for a big Australian charity organising home deliveries of Christmas hampers, helping with Ethics programs as they were introduced into schools and teaching mandala classes at the local library.

The worst part of all of these was the bureaucracy:

  • the need for me to PAY for my own training in one instance
  • the ‘bossiness’ of at least one organisation that did not bode well for my continuation
  • the need for me to pay for liability insurance should I decide to be a solo volunteer  teacher

And so, I am no longer a volunteer. Nor is my husband who has a list that starts with: expecting a person to work (driving people to appointments) from 8.00 a.m. to 5.00 p.m. with no real breaks as where we live there are some distance issues.

*Exception to being a Volunteer.

Ambassador for Head and Neck Cancer Awareness for Beyond Five.

This is one role I enjoy very much. I am still learning it as I go but I am respected and treated well. In fact, I am given guidance but also able to suggest how I can add to ‘getting the head and neck cancer stories out there.’ 

 

I have this fund raiser for Soup for The Soul, from Beyond Five, which assists in raising awareness of head and neck cancers, including the need for HPV vaccinations for males. Do consider a small donation here:

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 was initiated 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.  World Head and Neck Cancer Day is on 27 July.

My Soup for the Soul

 

The advantages of being old(er) and retired:

With my blogging, head and neck cancer treatments and check ups it is good to be able to enjoy a wide range of activities which do not come with a timetable!!

So, have you had a dream run with your jobs or is there a story to tell too?

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!

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Thank You To Me. 24/51. #LifeThisWeek. 68/2019.

Thank You To Me. 24/51. #LifeThisWeek. 68/2019.

I saw this as a blog post on a U.S. Blogger’s page via a link-up and at the time of writing, I cannot remember ‘who’ to give credit. I am hoping one of my regular readers who links up may remember what I cannot.

Thank You To Me.

The A-Z of it!

A. Accepting most days what I find I can do and getting over what I can no longer.

B. Blogging. I am so appreciative that I took the opportunity to start a blog back in 2010 because over the years it has continued as a source of care, information and connection.

C. Cancer is not something anyone ever wants but I am, in so many ways thanking myself for the ways in which I have overcome challenges (and grown) associated with a serious head and neck cancer diagnosed only 2 years and one month ago.

D. Determination is generally a good quality and I am thankful at times that I can, with some thinking, pull back from something I am determined to do if it is not a great fit but I also LOVE that I am determined and get on with life as best I can.

E. Excited me is pretty cool and I know my energy levels are high when I am excited. I am so pleased that I can get excited about the little things in life as well as the more major events.

F. Family is so important to me and I am so thankful we got to raise two children who then went on to have their own families. Learning to step back from direct involvement in their now family-life has been hard but I am so glad I was guided by me (and my husband) to do so. Unlike my years of obligation to my direct family and how I am now independent is a very big deal for my….

G. Growth. In the past 5 years, I want to thank me for ALL I have had to learn through tears, stress, anxiety, IBS and cancer….as well as a close relationship with my…

H. Husband who, now it’s just us, is a fantastic partner, someone to laugh with, awesome hugger and downright good company and I love him very much.

I. I am interested in people and I hope use my intelligence wisely and with integrity.

J. Joking around and having fun is one way of relieving stress and reading out a joke without laughing can be very difficult.

K. Kilometres I travel safely in my wonderful car make me glad for my long-held driver’s…

L. Licence and that I am proud to say I have held it for 52 years!

M. Marriage and money. Actually marriage is, for us, better than money. We both think (despite little disagreements) that we did win the lottery in marriage and that is better than all the money in the world. 49 years since we met this October!

N. Newspapers and me. I grew up with this and I am always glad to find a newspaper to read. I thank those who still publish the ones you hold with both hands as you read. Free local paper to the Australian-wide newspapers, they are all great.

O. Optimism. Oh, I know I am not naturally an optimist as I follow the de-fault of…

P. Pessimism but if it’s taught me one thing, it is that I can be wary but I can also be brave!

Q. Questions are something I ask a lot. I ask to learn, and I ask to find out and I ask, I confess, to find out a bit of goss. Not much. But sometimes.

R. Retirement is a funny strange  interesting time. I thought I would love retirement but it seemed that I needed to re-think that and gradually lean into retirement rather than work one day, stop the next as it was in my father’s day.

S. Schools have been a loved part of my life since 1954 yet I am not a nerd. I had some ‘not nice’ things happen to me at school as do most of us, but with kind and inspirational teachers, I knew at age 11 I wanted to go into…

T. Teaching. I love little kids and watching them discover and learn. I enjoy conversations with them even before they can talk. I love learning from others too.

U. Understanding myself has taken a LONG time and I thank my mind for helping me do this in the past few years. I have read widely, studied, been to talks and I “think” as best as I can say I am…

V. Very pleased with the person I am learning to love and really enjoy being. ME!

W. What a lot of time it has taken though. I spent decades people pleasing and can still get caught up in it. It’s been in the last 2 years (with cancer) that I have learned more of the …

X. X-factor. How to gain a kind of balance between self-care and caring for others. I still do not get it right many times but I am so much more forgiving and compassionate with myself now.

Y. Youth! I have long left my youth but I try to remain youthful in my outlook and going with the times. Those times, especially via social media, may not quite match my values these days, yet I like learning the views of those who are younger. Mutual respect is a goal!

Z. Z for….the end? Sleeping. I don’t have a word for Z…oh yes I do Zest for living! I have that.

What would you ‘thank you’ for today?

Denyse.

Kell also has a Monday linkup here. Join in!

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!

You are invited to the Inlinkz link party!

Click here to enter

My Virtual Soup for the Soul Information

Please consider making a donation you can afford here:- To help raise awareness of Head & Neck Cancer.

I had no idea about Head and Neck cancers until I was diagnosed in May 2017!

‘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.

 

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I Am Grateful Series. 61-80. 66/2019.

Beyond Five.

Denyse Whelan Head and Neck Cancer Patient now Ambassador.

Consider a donation of $5 or more to my Virtual Event

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 was initiated 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.

 

 

 

I Am Grateful Series. 61-80. 65/2019.

I am grateful every day.

Since learning more about myself, from before, during and after my cancer diagnosis, I know that I am better emotionally when I express gratitude.

I do this in a number of ways.

  • I will silently think of 5 or 10 things (using my fingers!) that I have been grateful for that day before I go to sleep.
  • I always express my gratitude to the person who has served me and made me my coffee. There are very few exceptions to this and watching someone’s face light up means the gratitude bounces back I guess.
  • I consider how another person’s day may be going and ask them how they are because we connect that way and I am grateful for the exchange.

A few years back I wrote a post about gratitude and how I was keeping a journal then. I am re-posting here what was, and still is, an excellent source about the value of:

GRATITUDE

The social benefits are especially significant here because, after all, gratitude is a social emotion. I see it as a relationship-strengthening emotion because it requires us to see how we’ve been supported and affirmed by other people.

Indeed, this cuts to very heart of my definition of gratitude, which has two components. First, it’s an affirmation of goodness. We affirm that there are good thing in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.

from here.

I have been going out each day since late October 2017, dressing with purpose and having a coffee.

In my small journal I might do some art or I might write to get my thoughts out.

Recently, I gave myself the challenge (I like a challenge!) of coming up with 20 things/experiences I was grateful for over 5 days, making a total of 100. Over the past weeks and one last time next week, I  share the groups of 20.

61. That I got to live at 61 Curban St from 1959 till 1970

62. That my Aunty Poppy who died at this age, showed me what unconditional love was

63. My family: close and extended cares about me

64. That I am in essence a creative person

65. Cooking is a fun way to create: when I am in the mood

66. Colours delight me

67. I love to drive and staying safe is #1 priority & I got my licence in ’67!

68. My mind – given a good challenge and coming up with the answers

69. “Enough” money for coffee and a treat most weeks

70. That I “WILL” get to 70 on 30 November 2019

71. My ability to choose foods with better health outcomes than I used to

72. My recliner chair. Ahhhhh.

73. Warmth of the heated pad on my back in said chair..Ahhhhhh

74. ACCEPTANCE is a growing concept I am getting embedded within

75. My support for others with head and neck cancer is 100%

76. Walking. That I can. I do want to walk more too.

77. Enough clothes now for every season and reason and in my size.

78. My continued connections with education

79. That my husband has his space for his work and hobbies

80. That I too have my space for the above.

How do you express gratitude?

Denyse.

Joining in with Min here for her Tuesday #ztt link up.

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Head & Neck Cancer. June Updates & WHNCDay 2019. 64/2019.

Head & Neck Cancer. June Updates & WHNCday 2019. 64/2019.

It would be remiss of me not to do an update in June….yes it would!

Having a CT ‘Surveillance’ Scan.

Following my 2 year (and every 3 month) cancer check my Professor determined it was now time for a ‘baseline CT scan’ of head, neck and chest. Ok. OK! It is a funny old thing, this cancer business until you “know” what the results are. There were no visible signs anything would be found…but…

I went. I was a bit nervous. I was finished in 20 minutes. Then I waited for a day, then another. Until I sent an email: already knowing my surgeon had a huge week but hoping he had a result. He did, I was told on the phone by his lovely practice manager: “ALL CLEAR”. Yay.

That week I also visited my dentist – the person who I convinced to remove the bridge & teeth in April 2017 where cancer was eventually found. He was able to check out all that had happened in the past 9 months and clean my remaining 8 teeth. I have an amazing team caring for me.

The First Week In June 2019.

This week marked the ten years since Professor Chris O’Brien, Head and Neck Cancer Surgeon, died from brain tumours. His legacy is so many people who trained and worked with him at R.P.A. and now at Chris O’Brien Lifehouse. His widow Gail O’Brien said recently that without Chris getting cancer he would not have understood the need for cancer patients to be cared for nor treated as well without his vision for a ‘one stop cancer care’ place. He knew that a specialist hospital -comprehensive cancer centre – would happen but he did not know of course that its obvious name would be his in the title.

On Monday 3 June I attended Lifehouse to hear the ‘stories’ of working with, knowing and loving the man called Chris O’Brien. This was a presentation about his legacy in head and neck cancer and as a patient with #hnc as its shorthand name is on twitter, I learned from those who have treated me and who paid tribute to Chris. In fact my surgeon’s final words of his talk were “there’s a little bit of Chris in everyone’s role”.

Later when I got to say hello again to Gail and to thank her for the work of Chris O’Brien, I said even at my most scared – one day after being told I had cancer – when I walked into Chris O’Brien Lifehouse I felt different. It was not a ‘hospital’ as I knew, it was full of interesting places and spaces and caring people. I felt safe and cared for. And still do. Each time I walk in, I look up at the various images of Chris and others and I am very grateful.

Being An Ambassador For Head & Neck Cancer Awareness with Beyond Five.

In June it’s time to ramp up the Head and Neck cancer awareness as we lead into the last week of July 2019 where World Head and Neck Cancer Day is marked with programs, conferences and more on 27 July 2019.

The colours for Head and Neck cancer world-wide are Maroon/Burgundy and Cream.

 

My #HNC & #B5 Lanyard with my card & Ambassador badge

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.

World Head and Neck Cancer Day: 27 July 2019.

Soup For the Soul Event at Gosford: Central Coast Cancer Centre. Tuesday 23 July 2019.

In June I will be working with the local Head and Neck Cancer Support Group at Gosford to prepare for our Soup For the Soul and Head and Neck Cancer Information and Awareness Day on Tuesday 23 July 2019 at Central Coast Cancer Centre. A year ago I went to the first occasion and met people who also had head and neck cancer and were carers and professionals too. It was the first time I had met anyone else with head and neck cancer. Now the people there have become friends of mine.

From 2018 World Head and Neck Cancer Day & Soup For the Soul at Gosford:

 

This post is to also support others around the world who will be part of the World Head and Neck Cancer Day in 2019.

Do support the charities which help with research and awareness of Head and Neck cancer.

In my case, the link in the story about my virtual Soup for the Soul event will take you directly to donate to Beyond Five’s continuing awareness updates and programs to help those affected by Head and Neck cancers.

Thanks for following my Head and Neck cancer stories. This is the link to where all of my Head and Neck cancer posts are as well as those that have been published elsewhere.

Warmest wishes

Denyse.

 

 

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New Normal For Me With Head & Neck Cancer. 43/2019.

New Normal For Me With Head & Neck Cancer. 43/2019.

It’s occurred to me that I’ve been writing posts about how it was for me BEFORE a cancer diagnosis hereand there are the series of posts about my surgeries and progress found here….but I have not done any updates of NOW.

Now as they say in cancer circles, is the new normalwhich is described here:

Finding a ‘new normal’

Many survivors* say that cancer changes them. After treatment, they may feel different, even though they look the same. With time, survivors often find a new way of living. Many call this a “˜new normal’. It may take months or years to find a “˜new normal’.

Misconceptions about treatment  ending

  • I should be celebrating.
  • I should feel well.
  • I should be the person I was before cancer.
  • I should not need support.
  • I should feel grateful.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#xc5f7pBq7VeQ7Oeq.99

Fellow Head and Neck Cancer Survivor, Julie McCrossin AM, the inaugural Beyond Five Ambassador hosts a series of podcasts here called About Cancer.

About the word: survivor. My personal choice is this one. However, it is not always looked upon well by some. I have no word to replace it for me. I personally do not like warrior nor does thriver work for me as it does for some. It’s just me. I tend to use patient maybe because I am still getting cancer checks. To each their own, right?

Now, back to MY version of New Normal.

I have really been considering this in 2019 as it ‘felt like’ and ‘looked like’ I was back to Denyse. But which version of Denyse? I am ageing too and I wonder if some of my thoughts are also linked to being in my 70th year.

When I was in pre-cancer times, I was so ‘caught up’ with managing my stress and emotional load at having moved from Sydney and all that entailed in getting used to a new normal for that situation. Suddenly, new normal meant:

  • no longer living in a house we were paying off
  • no more employment for me
  • no more regular contact and care for our grandkids
  • being a more stressed-out person than I liked
  • trying hard (so hard) to be better able to manage the life I had then: 2015-mid 2017

Then cancer entered my life.

Very suddenly I took on a new way of looking at life, and learning what was ahead.

OK. I was stressed but in some ways I knew what was coming and even though there were unknowns, I do know NOW, I have made it through

  • diagnosis,
  • 4 surgeries,
  • recovery times,
  • many prosthodontist visits and treatments,
  • adjusting to life with less ‘in my mouth’ to help me eat,
  • then getting more in my mouth to help me eat…
  • and bingo, the smile is back so…
  • back to normal, right?

OH no, so not true. For me at all.

Partly it was my belief I could be back to eating what I used to eat.

I even bought these foods after not buying anything crunchy for well over a year and they disappointed me greatly. Perhaps, for the chips, a good thing.

However, some of this is true but more is not.

I can only crunch and chew for so long.

It is almost a year since the last surgery inside my mouth to add more skin to the inside of my upper lip and around the top ‘jaw’ abutments. I got my upper prosthesis screwed in on 21 August 2018 and it has been removed only once for adjustment by the prosthodontist. I do upkeep: two routines daily, involving 4 steps using this:

In being totally honest with myself, I can say I need to remember more than anyone that I have changed because of cancer in my mouth.

Head and Neck cancer never really leaves us. This is the reason for Beyond Five where I am now an Ambassador. This site helps patients, carers, families and friends with ‘the years after cancer’s 5 year checks are up’.

Announcement of My Ambassador Role.

It’s stays as it affects our inside and outside areas of the neck, head and inside the mouth, cheeks, sinuses and down into the throat and more. In my case, it is all in the mouth. I was told pre-big surgery, no-one would know you have had cancer or surgery once this is all done, and that is true. In some ways, that is a reason why it is up to ME to manage my new ways of eating rather than expect, as I look normal, others will be able to guess what I need.

This comes home to me even as I can still struggle to eat a meal I have prepared. It takes a long time to eat and sometimes, I just divide it into 2 meals as it tires my new mouth and makes it sore.

This is what I know is my new normal.

  • I get myself up each day between 8 and 8.30 a.m. to eat a nutritious breakfast or weetbix or cereal with fruit/yoghurt and milk
  • I take time to eat as it takes time and as I am retired, I get to enjoy reading the morning paper that’s been home-delivered
  • I will do any minor household chores which are shared with my also-retired husband e.g. a load of washing is put on the line
  • I check my emails, my blog (I have a blog which posts a new post 3 days a week) and any social media
  • Time to get dressed for the day. In October 2017, following the first major surgery I had lost a lot of weight and enjoyed the fact that I needed to buy new clothes. As a previously very overweight person, this was F U N
  • However, I found this to be a new normal for me called #dresswithpurpose and I joined in #everydaystyle for around a year and what a great community of support surrounded me post-cancer. I had no top teeth but as my husband said “I smiled with my eyes”.

Dress With Purpose photos: 2017 into 2018.

  • Each day, after a photo taken by my husband, I venture out for a coffee (and now more often, a treat to eat) somewhere local or more distant. I love this part of my new normal.
  • I have my coffee, I take out my mini journal kit, and draw/write and I people watch.
  • Sometimes I browse if I am at the shops, other times I may be out in nature and enjoy that too.
  • I have my own car which helps me be independent and drive myself to all of my Sydney appointments.
  • After this it is closer to the middle of the day and I come home when I am ready and get my very crunchy lunch ready. It is a joy to crunch.
  • More reading after lunch and sometimes more work/play via the computer.
  • Some outside chores including nurturing the plants that gives me further purpose in cancer recovery
  • Then it is meal preparation or simply getting small frozen version of an earlier meal from the freezer. Batch cooking is the way I go: meat meals made with mince, lamb shanks, beef slow cooked and of course teensy cakes for treats. I love them too.

Now I know this about my new normal.

I need to appreciate this new normal and the state of health I am in. So far, almost 2 years since diagnosis, there has been no return of cancer. I have the best health professionals looking after me and I am grateful eternally for them, their skills and their care.

I will continue to learn more about myself as I both age, and get used to ‘what’s inside my mouth’. I do know that pain comes and goes. I also am reassured that my mouth continues to be healthy inside and I am caring for it well.

I do not have any mobility problems with my right leg even though the fibula was removed for my new jaw. Thanks too for the skin and flesh, right leg!

I am loved and cared for by many as I do of them. This is a very good way to live.

In my 70th year I continue to enjoy creating with art, meeting up with friends for coffee rather than a meal, travelling to other cities by car for events and entertaining our family, along with continuing my engagement with school education, and promoting more about the awareness of this rare, but not nice, cancer called Head and Neck Cancer.

My new normal is awesome.

Denyse.

This post is being shared on link ups here, on Wednesday and  here on Thursday.

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