Wednesday 13th November 2019

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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Women Of Courage Series. #20. Tracey Fletcher King.100/2019.

Women of Courage Series. #20. Tracey Fletcher King. 100/2019.

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

Welcoming friend and artist, Tracey Fletcher King, aged 51, to this series. Tracey and I have ‘known’ each other via the world of art and creating and a few years back, she had some wonderful on-line classes called Delicious Paint. They were delicious because it was about learning to paint fruit and vegetables. I amazed myself when I saw the shapes and colours in a few I managed to do under her guidance.

I learned so much about ‘patience’ in waiting for  a page to dry because it would not help me get the result if it was a teensy wet. Maybe, without me knowing it, Tracey was using her experience as a cancer patient to then help me (again) as a newbie cancer patient back in 2017. Here’s more about Tracey in her words. A little different in presentation this week, is the use of two other images (I asked Tracey to supply them) about her Art Exhibition. Go, if you can. I know some Queensland blogging friends did last year.

 

Blog/Website: www.traceyfletcherking.com

Instagram: traceyfletcherking

 

 

 

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

Six and a bit years ago I was diagnosed with breast cancer. Nothing too special about that as 1 in 8 of us will be diagnosed with it, and despite mine having spread to some lymph nodes and a gruelling year of treatment I had good results and for a glorious couple of years I was cancer free. In April 2016 I went for my routine check to hear that my cancer had returned and had metastasised to my liver, and suddenly everything changed.

The courage, bravery and strength I thought I had acquired thanks to my first run around was blown away from that moment on as suddenly I was dealing with incurable. Those words and the new path I was then on was devastating. I had to tell my daughter, my family, and face the five million tests to determine treatment options etc while holding it together. I still have no clue how I got through that week but I think it was one of my strongest weeks just to get up and face it.

 

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

This new reality has changed me in profound ways. We all have a use by date, but mine is monitored and discussed constantly and while some weeks it feels like we may have years left and others the end feels scarily close, it is always there at the back of your brain. It is part of my everyday and the only way to cope for me is to be pragmatic. I had a stage of not wanting to know what was going on, and I tried like crazy to pretend it was all going to be fine and that a miracle cure was around the corner and every other thought that screamed avoidance. It didn’t make things easier, in fact it made it harder and those months were pretty miserable as I tried to shove the cancer bunny back in its hole but during a round of chemo my oncologist explained having cancer is like trying to hold sand, eventually it will run through my fingers and there will be none left, but his job and mine is to keep shoving as much sand back in as we can.

That was a revelation to me.

I can only hold that sand if I acknowledge that I need it and that it is running through my fingers which that can only happen if I am dealing with it so that’s what I do. If I try to pretend and have no say in my care or face how I am doing then how can I hold that sand? It takes tears and a good old boot up my own butt somedays, and other days I feel like I am piling that sand in there left right and centre, but I face it. I don’t try and hide from it or cling to false hope. I am just going to do the best I can with what I have and for as long as I can and as long as I stick with that I can face almost anything. This is so much easier to deal with and makes courage an everyday habit rather than something to call on in dire circumstances.

 

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

The idea that if you pretend it’s not there it isn’t happening is one of the toughest mindsets to cope with. It’s weirdly easier to just face it, grieve, yell, stomp around the house, cry, try new things, change your mind a million times and be angry at what’s been dealt to you, than trying to pretend it’s not there. The sooner you face it the sooner you can live with it. The fantasies you have in your head of how bad things are going to be are always worse than the reality in my experience so just face up so you can stop wasting time and get back to the good stuff and there is a lot of good stuff. My days are filled with lots of great stuff, they are also filled with a litany of side effects from ongoing and endless rounds of chemo but life is actually pretty good now I let it be what it is and go along with it.

 

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

I know I am more courageous now. I don’t have time to warm up to things or to run endless pro and con lists before I do something I just do it. I don’t want to regret time taken making decisions and torturing myself with what ifs… I just jump in most of the time now. Well not so much jump as a bit of a lurch but I just get on with things. I am better at saying no to things and I spend a lot less time on social media. If people find my work and want to buy it etc then that’s great but I’m not into marketing my art or anything else. I got rid of a heap of online platforms and my days are much better for it. It takes so much pressure off to not be faced with a barrage of notifications and emails. I have stepped back and enjoy the quiet a lot more. I meditate daily, exercise most days and face chemo with a welcome attitude instead of dreading it. It is all about going with the flow rather than fighting things and that gives me the time and energy to be courageous when I need it.

 

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

The thought of what may happen is always worse than living with the reality so face it as soon as you feel able to, and then go with the flow because some days you just have more than you do on other days. For example I ask myself how strong am I feeling and then tell the oncologist at the beginning of the session, I’m having a strong day today so hit me with it, or I’m not feeling on top of things so just tell me what I need to know. Courage is a habit and some days you will do it better than others so make the most of it when you are feeling strong and be kind to yourself on the days when you aren’t feeling so strong.

 

 

That is one BIG story of courage. I know that others who read this are also undergoing treatment for cancer which decided to add its ugly presences elsewhere. I do hope as I am sure readers will too, that your art exhibition is a great success, and that your treatments give you the strength to attend. You are in my thoughts often. Your kindness, checking on me during my early days of learning about my cancer, will never be forgotten. Thank you Tracey.

Before this post went live, I was assured from Tracey that all fingers (and toes!) were crossed that she was well enough for her treatment regime and that she would be able to attend this much anticipated event:

Therefore I am adding this for you, dear readers as Tracey and I have discussed:

“Tracey will be delighted to see your kind words I am sure, but as she is conserving her energies (post chemo treatments is always a challenge) for this Art Exhibition “Still Blue and White” coming up on Saturday – see the brochure- I know she will read but may not be up to commenting right now.’

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.

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

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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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Self-Care: Share Your Story#3. 21/51#LifeThisWeek 58/2019.

Self-Care: Share Your Story #3 21/51 #LifeThisWeek 58/2019.

You know I thought I had self-care pretty well sorted. Turns out that is not always the case.

Back story:

I talk about and write about self-care but….when it comes to me, there are times I neglect to take into account some of my life circumstances and events where I may need to UP the self-care.

Does this make sense?

I found, to my detriment, that the need for self-care is especially high when I have:

  • had a time of remembering cancer’s decision to lodge in with me 2 years ago which I wrote about for several weeks before the 2 year anniversary
  • more emotions tucked under my more confident exterior than I realise
  • been to a cancer-centred place and
  • had a cancer check at said place

That was my Tuesday 21 May 2019.

How did I come to this conclusion?

From a 9 a.m. departure from home, to a 4 p.m. arrival , I realised, even though I love driving& returning to Sydney, that it had been a BIG day:

  • finding a park somewhere near any hospital is a pain but I did, it was quite a hike away & the carpark was not made for SUVs (mine is not huge!)
  • being on time for my catch up is important to me as was getting a double shot latte (and lemon delicious tart) into me before the meeting
  • having a good talk with N from Beyond Five and seeing my head and neck nurse too
  • leaving some art materials with the art program head at Lifehouse and being asked to come back to speak to other cancer patients about my positive take on life after a cancer diagnosis and how art helps me
  • being surrounded by the legacy of Professor Chris O’Brien in this amazing place, Lifehouse, named after him
  • viewing his memorabilia marking 10 years since his passing, even though I did not get to meet him, I have met his wife
  • attending my 3 monthly check marking 2 years since cancer diagnosis
  • getting good news (I guess) that there is no cancer present but I will need a CT scan next week….and be back for a check up in 4 months
  • having a wonderful chat and laughs with both my surgeon and nurse
  • them showing appreciation of my role as an Ambassador and getting some photos taken

and that without having cancer, I would not have been there nor had these experiences.

So: I HAVE had cancer and it’s always present (in mind if not body: cross fingers) and when that sank in, and I was tired & teary the next day…with some evidence of my old faithful emotional measure, IBS…

I KNEW what to do NEXT time.

For optimal self care I need to  allow the day after a big one like this to be a transition and be gentle to myself. In words and actions. Some art, some time outside in nature and something nice to eat with my coffee and to manage some more mindful and compassionate times telling myself how that’s been a tough time, but how I am caring for myself better now.

Oh. The new Apple Watch is helping me too. Stopping to breathe mindfully  or one minute every hour and counting my activity as it is good for me to be active – within the limits of my current physical health.

That’s what I have been up to.

 

Do you find you need a ‘day of rest or better care’ after a big event of any kind?

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: 22/51 First Job. 3/6/19

You are invited to the Inlinkz link party!

Click here to enter


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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

You are invited to the Inlinkz link party!

Click here to enter


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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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Two Years Ago: Before My Cancer Was Diagnosed. Pt 2. 31/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 2. 31/2019.

For anyone affected by a life-changing diagnosis that comes after some time of illness or maybe there is no sign, time becomes a part of memories of ‘back then’.

In writing here on my blog, I know I am helping myself as I continue to process my thoughts, actions and concerns relating to my eventual and pretty shocking diagnosis is a rare cancer in my mouth. For those who would like to read about this in the series of posts here is the link to the page called Denyse – Head & Neck Cancer.

It was recently that trawling through on-line journals I realised how much I had gone through along the way so I wrote the first post in this series is here. 

This post takes a different theme which was relevant to why and how I was feeling and acting in those months from December 2016 into May 2017.

March 2017.

It must be just me. I don’t know how to settle well into my life now it’s over 2 years since we left Sydney and are making a retirement life for us. How come “I” cannot settle. What is WRONG with me? My husband is doing it with ease. In fact, he is already volunteering in two community organisations, is planning to continue his tertiary studies. Me? I face each morning with trepidation. I find it hard to get up. To what, I ask. I go through the motions of making it look like I am OK. But I cannot fool myself nor my husband. It’s me, I just do NOT know what is wrong with me…..I know my GP says I am somewhat anxious but it’s for a reason which related to stress about my IBS. She tries me on some anti-depressant meds briefly but they affect my gut. I see my psychologist who again tells me, “you need to continue exposure therapy.” I am losing weight because I am too scared to eat because of IBS.

This look on my face here is me gaunt and showing the fear within even with my then-smile. Underneath those teeth was …..no-one knew.

What Did I Do?

More of what seemed to help me. At least it passed the time. It did not ease the knot in my gut for long but I was focussing on self-help. I must have listened to 100s of hours from many. These are people whose words I continue to value and have all of their CDs still. I listen to few now, but back then I thought they were helpful for my mind to slow a little. I used to listen in a semi-meditative way or as I was making some mandalas or patterns. I found these people’s words matched a lot of what I was hearing from my husband and my psychologist too.

My blog was a great spot for me to gather my thoughts and be interested in others. I was so pleased that I HAD made my blogging a priority. Mind you, there were days when I was not interested in connecting on line…but I did and continue to do so in the overall goal of remaining connected.

I probably did not let on to many other than my poor husband just how bad I was feeling on some occasions. I felt bad about feeling bad! I wondered if there was any chance I could feel ‘like I hoped’. My former GP who I continued to see in tandem with my current one for the next 2 months, was kindly but even she seemed to run out of reasons why I continued to feel so anxious.

The age old question: Was I anxious because of the likelihood of IBS or was the likelihood of IBS making me anxious?

I tried SO hard to make my inner life a better experience! I did art of one kind or another most days, I ventured out on short drives when I felt well enough, I cooked a little bit but I was so anxious about people visiting I could not enjoy the company of family nor was there any way I would drive to Sydney to see anyone. Nope. Not on.

Here are some of the many sayings that I hoped to absorb and integrate into my life. These were posted on Instagram. That account was hacked in May so I no longer have the IG versions, just my photos.

And all this time, my mouth hurt.

  • The skin behind the upper gums where the bridge was continued to be inflamed.
  • No the extra cleaning done in early March (see first post) had not changed anything.
  • The skin was growing over the top of the front teeth.
  • This matter concerned me greatly. I know I told my husband often enough.
  • But, as no-one in the dental or medical field had deemed this to be of any great consequence, I continued on.

Sadly, in pain emotionally and physically.

I hope that this post is helpful in understanding that my internal dilemma was a huge influence as I thought “I made all of this happen“. It would appear, that I may have been thinking about cancer far longer than even I realised. It IS true.

Next time: I could not bear it any longer….. “take the teeth and bridge out, I HAVE to know what is underneath!”.

Denyse.

Joining in these link ups:

MidLife Share the Love: Here on Wednesdays

Lovin’ Life: Here on Thursdays

Open Slather: Here on Fridays.

Do visit these link ups and join in the reading and commenting. We ALL need each other here in the land of blogging and comments are our “GOLD”.

 

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