Thursday 9th April 2020

Share Your Snaps #1. 5/51. #LifeThisWeek. 9/2020.

Share Your Snaps #1. 5/51. #LifeThisWeek. 9/2020.

Here we are, fifth week of the link-up already, and it’s time to Share Your Snaps. This optional prompt occurs every 5th week here for Life This Week.

January 2020 has not, in the overall scheme of things, been wonderful for so many people and places. As I prepare this post, it’s late Saturday in NSW on the Central Coast and (fingers crossed) the air-con is working because it’s high 30s outside. Many are doing it much worse than we are, including family who lived back where we used to – it’s around 45deg C there now. I am getting RFS fire updates for NSW on my phone and “know” it is still very nasty out there.

Here’s my January: each has a short story! Of course it does.

A flashback to the end of November when I received the delightful photo book with these lovely grandchildren. Love this so much.

After the success for me of finding something/someone/reason to be grateful for my birthday month of November, I went full-on into gratitude. I wrote about the why here. However, January has really made me work at finding gratitude. I guess, that IS the point. Nothing comes easy. I admit I faltered a bit wondering whether to continue to post a photo each day for 366 days but I am continuing. I also complete a journal entry each evening.

 

What helps keep me focussed….

Back in January 2018, as I faced more challenges (despite the fact I had already overcome many in 2017 relating to head and neck cancer) I made my word that year: B.O.L.D. I explained its purpose here. I know I glanced at and reminded myself of my goals a LOT in 2018.

In 2019 my husband suggested that whilst I may have had head and neck cancer, it was not the sum total of Denyse. Yes, he is/was right but I also saw that this takes time to integrate into one’s life. I used integrate as my word….and tripped, fell, got up again…a few times as I did this over and over. But, it, like the year before’s B.O.L.D. worked.

It comes as no surprise for regular readers and followers  then that I chose gratitude for 2020. I saw how helpful having the words engraved on little bracelets was for 2018 and 2019 so 2020 got a third one. I admit they are not heavy at all, and I do look and them more than I realise and am buoyed and supported by my memories of how I far I have come and how I can keep on going. Even on tough days. I am actually having some right now. Sigh.

Thank you NOT Instagram.

I have been unable to be part of Instagram on my new Iphone since 7 January. I have tried un-installing, re-installing, making a new account, sending messages to both Instagram and Facebook and seeking help at the Apple store. I have the app on the Ipad and can use instagram there but for this Iphone lover, it is not fun. Nevertheless, I am still seeking help and have some plans to see other people who may help. I do believe, the whole thing is about something being ‘stuck’ in their system. I am OK about it for now but it is frustrating.

In the meantime I opened a second Instagram account: @denysewhelan_blogs for my gratitude photos and @denysewhelan continues for day-to-day pics. I have made them both public and deleted many of my photos so if one or the other gets ‘hacked’ I have photos already in the cloud etc.

We celebrated 49 years of marriage on 23 January and this photo was unearthed when I last visited Dad. Mum had a ‘brag book’ with our wedding pictures in it. I look at this photo and of course love it but think “why didn’t I wear something around my neck?” Seriously I was very much a minimalist in terms of the dress. This was from Bridesmaids’ stock at the wedding shop we went to in Sydney. Still have the dress. No, still can’t fit into it but a couple of granddaughters have tried it on as little girls.

One year before marriage, I was appointed to my first school. Barraba Central. I got this copy of my service record when I had my “proper” retirement from N.S.W. Department of Education in 2018 and I just LOVE how my record was hand-written. Sigh. This is from the NSW State Archives in Kingswood.

A simple lunch, right? Well, for me it was another occasion to give this food of regular eating a go. Even though I have a set of teeth up top, my mouth does not easily eat foods unless they are cake-like, cereal with milk, soft and creamy and so on. But I really miss regular food so gave this another try. Instead of joining the bread roll, I made it the 2 halves and with some small bites, and chewing very well, I enjoyed the simple lunch as shown. Lettuce is tricky for head and neck cancer patients which is why I chose a curly textured one not a slippery smooth one.

Back to the beach. 

Inspired by a friend in New Zealand who posted a photo of herself off for a beach swim, I made a promise to myself to get back to the beach. Well, in a way. I chose not to go into the water: rough and some blue bottles and seaweed, but I did walk in the water and enjoy the ambience and views. What I did not factor in is that mornings are my “going to coffee at the shops” time and so will keep beach visits to afternoons and when cooler day occur!

Thank you grandchildren…and my children who made this photo shoot happen. Bye to January 2020.

Having said goodbye to January, I am turning my mind towards February and taking part in Fat Mum Slim’s Photo-A-Day. I am not regularly part of this but figured for 29 days I will give it my best. Do you follow @fatmumslim and #fmspad?

Thanks for reading and I hope linking up a post too.

Denyse.

Link Up #174

 

Link Up #174. Life This Week.

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, or on your sidebar.

*Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice.

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Next Week’s weekly optional prompt is: 6/51 Interesting 10.2.2020

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Women Of Courage Series. #23. Lisa Greissl. 108/2019.

Women Of Courage Series. #23. Lisa Greissl. 108/2019.

A series of blog posts on Denyse Whelan Blogs to be found here from mid May 2019: Wednesdays: each week.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda.

Lisa Greissl, aged 35, and I met first on-line thanks to having our cancer treatments at the same place: Chris O’Brien Lifehouse and later when I became a ‘maker of bookmarks’ which I supplied over quite a few months in 2018 to be added to The Big Hug Boxes and Random Hug of Kindness Boxes. This woman has energy in her life propelled by her desire for spreading kindness and appreciation as well as the ‘joy of living’ post-cancer. Lisa’s story tells it better. However, I wanted to add, she is the most beautiful person inside and out, having met her family I can attest to much of the ‘why’ she needed to continue her life so fully post-cancer! Thanks Lisa. I do value your work and our friendship.

 

 

 

 What have you faced in your life where you have had to be courageous?

There have been many occasions requiring me to be courageous, but the most significant was just after the birth of my second daughter where I was sent by a midwife completing her home visit to myself and bub to get a scan.

Only 5 days after bub was born I was back in hospital after a blood clot was found in my main iliac vein and further investigations were to commence. Little did we know soon we would be calling on courage to get through the next year.

My family, friends and I were all left completely shocked as I was diagnosed surrounded by a group of around 10 specialists crammed into a little room saying that I had a rare form of cancer, a Teratoma on my spine.

We had no choice but to put on our courage cape and face this battle with everything we had. Even though I was the one facing the challenge I honestly believe during this time my family and friends had to be more courageous as they watched their loved one struggle through treatment and recovery whilst ensuring all the day to day tasks were taken care of. My husband in particular, had a two year old and a newborn to take care of whilst I was receiving treatment in Sydney.

 

 

How did this change you in any way? Please outline further if this has been the case.

In this circumstance, being courageous was not an option. I chose to embed a positive mindset and a promise to never give up. As I was to find out as treatment progressed, It also put into perspective on what nothing to lose really meant.

This has changed me in approaching new challenges where I have chosen to embrace requiring courage in a positive way of achieving my dreams which has seen me achieve things that I never thought possible.

 

Is there something you learned from this that you could recommend to help others who need courage?

Courage is not a switch on and switch off emotion. It is something embedded in all of us ready to be used when necessary, do not fear for the unknown but give yourself some peace in that when you need courage, you can and you will be able to use it.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

I now utilise courage often to believe in myself and what I can achieve.

Your mindset is a powerful tool to accomplish the what seems impossible and I continue to embed a mindset of “I can, I will”  which as mentioned I know is in within myself ready to be used in which I have surprised myself in what I can achieve. As a result of sharing stories and my mindset, I was able to create and become the Founder of the charity The Big Hug Box in 2018. Helping cancer patients find their courage through a giftbox filled with comforting and empowering products for patients facing cancer.

 

Is there any message you would give to others facing a situation where courage could be needed?

I would be lying if there were not times where I questioned if I really had the courage to attempt to achieve my big goals but from my previous experiences, I now understand that courage multiplies courage.

I also understand the impact of the saying that “Hope is stronger than fear” and mindset is everything to assist in enduring the toughest of challenges, when we are at the most challenging point.

But also to add to this, courage is not just required in tough and difficult times, courage can be used when you have a goal and to add to the saying above that hope is greater than fear is that on the other side of hope is the uncapped magnitude to achieve your dreams, and that this is in the ability of everyone.

 

 

Lisa story is amazing and we have met. I offered to make bookmarks to be included in the Big Hug Boxes in 2018 and then as Lisa’s ideas spread to Random Hugs of Kindness Boxes I was part of a ‘packing team’ at her house further up the coast from mine. I met her family and friends, and one very special friend Tracy who was the first Ambassador for The Big Hug Box. Tragically Tracy’s cancer could not be tamed and she died after a life lived fully earlier this year. Lisa teaches me that resilience is important and to adjust your life to make the most of it. As a runner with a now-damaged leg from her surgery, Lisa turned to a new fitness activity and that is rowing. Her zest for life is infectious. Recently I sent a Big Hug Box to Tracey whose story was published recently. If you would like to share kindness with someone you know who has cancer, please click on the links and find out how.

Packing Random Hugs of Kindness Boxes. 2018.

Thank you for sharing, Denyse.

Social Media:

Blog/Website: www.thebighugbox.com

Facebook Page: The Big Hug Box

Instagram: @thebighugbox

 

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.

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

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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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Self-Care: Share Your Story #4. 28/51 #LifeThisWeek. 77/2019.

Self-Care: Share Your Story #4. 28/51. #LifeThisWeek. 77/2019.

This week I will be completing week 8 of a ten week “moving for wellness” from the N.S.W. Department of Education as part of the Premier’s Sporting Challenge. I was kindly allowed entry as a retired principal …and it has been such a good boost to my physical and emotional health. I got a pleasant suprrise last week…I am doing better than I ever thought I might.

 

For this week’s self-care story it’s about:

  • finding a better balance between ‘doing for others’ and ‘doing for me’
  • learning about something new to help me use my phone with greater ease
  • making myself get into the outdoors more..no matter what the weather
  • allowing  time for morning teas out and meeting people and loving it
  • daring to go somewhere challenging & despite some difficulties emerge from it with greater self-confidence
  • accept that to grow, I still need to remind myself to do the hard things. Posts about that here and here.
  • returning to art-ing as a daily and creative habit after some time away and loving it more because of that
  • being well….because I have such a great team who have cared for me since I got cancer two years ago (posts here) and it’s UP TO ME to stay this way

What’s been your level of self-care lately?

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: 29/51 Winter: Like/Loathe 22/7/19. 

I will not be following the optional prompt as I have been remiss in updating Telling My Story, so I will write the next post for that instead.

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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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My Best Birthday Cake. 23/51. #LifeThisWeek. 65/2019.

Beyond Five.

 

Denyse Whelan Head and Neck Cancer Patientnow 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.

 

My Best Birthday Cake. 23/51. #LifeThisWeek. 64/2019.

I cannot think of a ‘best’ birthday cake so I am going on a trip down birthday cake lane!

I think any birthday cake made for me by my Mum was a great one.

Mum might not have liked eating cake much but she sure enjoyed making them for us kids, and then her grandkids and I do think she even contributed to a great-grandchild’s birthday cake way back.

I use many of Mum’s strategies in cake making as I have her basic cake recipe in her handwriting in my recipe collection. She did not have electric beaters until the late 1950s so making by hand was even harder. Mum never had a ‘proper mixmaster’ and neither have I. We both preferred the electric hand held mixers.

My First Birthday.

Made by Mum I am sure!

My 65th Birthday.

Made by my daughter. A favourite of my late Mum’s that my daughter and I often made. Orange cake. This was a special but somewhat sad occasion as it would be the last birthday celebrated in Sydney with our children and their children. We have not celebrated any birthdays with all of the  family since. For reasons that are about distance and changes in lives of those concerned. It happens, right?

My 67th Birthday.

One little cake made by me. My husband joined me when he came home from Lifeline counselling. I remember this day well. Making an effort with my appearance because my ill-effects from IBS and anxiety (grief-like) were getting a hold. We were not to know, that within 6 months I would be diagnosed with oral cancer. And, I also did not know this would be the last time I could blow out the candle!!

And, for my 69th Birthday!

My chosen celebration was morning tea out with my lovely husband and then at home I said “we’d better have a cake and a candle”. Of course, I always have little cakes in the freezer….and here was when I found out what small limitations my mouth now had. It does not seal properly either. But no matter, the cancer is gone.

How about you?

What are your memories of birthday cakes?

I should add, I like all Mums (and possibly Dads and grandparents) got a copy of the Women’s Weekly Birthday Cake Book. My daughter now has my original. I made the “one” for our son’s 1st birthday and he is now 40. Mum took to this book well. Over the years she made the racing car track, the number that was all lamingtons, a tennis racquet cake and later on…much later, our daughter made the Thomas the Tank for her then boyfriend’s 21st.

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!

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Next week’s optional prompt 24/51 Thank You to Me. 17/6/19

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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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Share Your Snaps 4. 20/51 #LifeThisWeek. 53/2019.

Share Your Snaps 4. 20/51 #LifeThisWeek. 53/2019.

Every 4th week for #lifethisweek the optional prompt is about sharing your photos. Less wordy….more visual is the intent. See how I go this time!

It was a momentous week in Australian politics.

The new prime minister of Australia is the one who was there before the election. Nothing else to add.

Australia’s legendary PM from 1983 and for 4 terms was Bob Hawke and he died 2 days out from the 2019 election. I honour Bob here for the good he did (and I know some remember differently) and that he took time to answer my then 7 year old son’s letter when he wrote to him about ‘not wanting a war to happen’. I have since found more people got letters back from Bob Hawke, written in his own time and signed. No PM has done that since I have heard. Thank you!

But it has been a pretty big week for me…actually an anniversary of 2 years since my cancer was diagnosed. I am very grateful to be as well as I am. I have a visit to my head and neck cancer surgeon tomorrow and “hope” all being well, the next visit will be in 6 months.

Marking the occasion was by making a HUGE mandala which I started a month or so ago to literally remember by a space on this and a photo of me from every month.

I also made these photo collages. I find it really helpful and motivating for me to “look back and see how far I have come”. Here they are:

Before May 2017 diagnosis, I was ‘trying’ to be smiling and well but something was lurking….from 2016 onwards

 

Recovery & surgery times: July 2017 onto Nov then into Feb 2018

 

Surgeries x 2 recovery and then…many trips to Westmead for upper prosthesis. Teeth added: 21 Aug 2018

 

Smiles for day…months and more!

 

Taking this up to recent weeks. Of course, I still have to be wary of eating and it takes a LONG time to eat small amounts requiring chewing but very happy indeed.

For about 6 months I toyed with the idea of getting an Apple Watch. Those who have read some of my Instagram posts know I now have this but I shall share more. I wanted to have “something” to mark the 2 years of cancer done but it seemed extravagant for us on a tight budget to get one. I had this idea I would sell some books and CDs towards a saving plan and actually that brought in $100 net! Thanks friends here. Then on Friday, 17 May 2019, I was taken on our morning tea date and when it was over, asked did I want to go get this Apple Watch now!? Apparently my face showed it all. SURPRISED! So, it is never “that” easy because one shop did not have the colour and size in stock but another did and off I drove happily that afternoon. And what I totally love about an Apple Product is…unwrapping. One day with the watch already and I will be, at some stage, changing the band. No blue tooth earbuds yet either. I shall wait and see.

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!

Next Weeks’ Optional Prompt: 21/51 Self-Care: Share Your Story #3 27/5/19

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