Sunday 18th August 2019

Share Your Snaps #6. 30/51*. #LifeThisWeek. 81/2019.

Share Your Snaps #6. 30/51*. #LifeThisWeek. 81/2019.

*The World Head & Neck Cancer Day and Soup For the Soul Version 2019.

Every 5 weeks here, there is a photo-based post called “Share Your Snaps.” I sometimes need to add words…that’s me. This time around I am letting the photos tell the story of World Head and Neck Cancer Day and Beyond Five’s Fundraiser: Soup for the Soul.

July 2019.

July has been chosen internationally (since 2015 I believe) to have one date noted as “World Head and Neck Cancer Day” 27.7.19. Like most ‘events’ health-wise, this one has an origin in the U.S. and the colours for Head and Neck cancer internationally are maroon (burgundy) and cream. In Australia those who follow Queensland in State of Origin would be impressed. Moving on.

The only charity devoted to Head and Neck cancer awareness in Australia is Beyond Five. Regular readers will know as a head and neck cancer patient I was keen to help share information about this little-known cancer and late in 2018 I was invited to become a volunteer Ambassador. I have written more here.

How did this July go?

I held a virtual Soup for the Soul event which raised $355. $385 as of time of publication! Thank you all.

My Soup for the Soul

I promoted Soup for the Soul via social media and there was also a ‘real event’ at the Central Coast Cancer Centre: hosted by the centre and the head and neck support group with donations of soup, rolls, the space in which to hold the event, prizes we got as donations for a raffle and my tiny cupcakes were sold. There were quite a few of our group there and here we are. FYI, in this photo there are 7 of us with head and neck cancer.

Some snaps from the day.

Beyond Five Information Sharing.

Promotion of WHNCD and Soup for The Soul via My Local M.P.

Last year, the Federal M.P. for Dobell, our area, Emma McBride kindly came to our place to meet with me to hear more about head and neck cancer and to support Soup for the Soul.

July 2018.

From time to time, I have kept Emma apprised on my progress, and recently wrote to her about this year’s event. She was able to meet with me, on the ACTUAL World Head and Neck Cancer Day to both offer her support and then share via social media. Emma and I also discussed the importance of carers and she is now the shadow minister for carers and mental health. Thank you Emma and also Jacqui for organising this!

July 2019.

What Next?

I admit I need a little break from all things head and neck cancer but then again, how I would do that when it is part of me, I am not sure!!

I am making a walk each day my focus and I am getting back to noticing nature and of course, the dressing with purpose and going for a coffee EVERY day remains essential to my wellbeing.

How do you go looking after yourself after an intense time of busy-ness?

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 link up: 31/51 Gratitude 5/8/19

 

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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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Share Your Snaps #5. #LTW25/51. My Head & Neck Cancer Photos 2017-2019. 71/2019.

Share Your Snaps #5. #LTW25/51. My Head & Neck Cancer Photos 2017-2019. 71/2019.

I am choosing to celebrate my two years + since head and neck cancer diagnosis in images that mean much to me as a patient who is using this medium to show:

Surgeries,

Healing,

Gratitude,

Waiting, 

Becoming Well.

Some images may be confronting to you. The nature of having a head and neck cancer is that it is brutal in its ways of eradicating it. Be it surgery (my sole treatments), radiation, chemotherapy or a combination of all. Please consider using my experience to get your mouth checked and to follow up any pain, lumps & bumps in the head, neck, under ear areas….And please think about a donation to my Virtual Fundraiser for BeyondFive where I am a volunteer Ambassador. Link at the end. Thank you. 

 

1. Where recovery began. Chris O’Brien Lifehouse in July 2017 and realities of being home and what my body was doing to heal.

2. My ‘mouth’ reconstructed…and lots of waiting for more surgeries and needing to adapt to changes in my mouth. Surgery in Feb 2018 too.

3. And a 4th surgery…gets me closer to upper teeth but such a long wait with a stent attached inside. Getting my #HNC awareness happening & supporting the first Soup for the Soul event telling my local MP about it.

 

4. Many trips to Westmead as my mouth needed measurements, cleaning of abutments area and so on. I had 2 more surgeries to make my mouth ‘teeth ready.’ My first meeting with Central Coast HNC patients. I had not met another HNC patient till almost a year after my first surgery. And....S M I L E.

 

5. So many reasons to smile, show appreciation & help support the works of HNC groups, meet with Beyond Five, smile at my surgeon and see the realities of inside my mouth, with my prosthodontist telling me all about how this is screwed into the cheekbone and more. Yikes. No wonder it hurts at times.

6. With my recovery continuing my confidence improved.It was great to have some special occasions including a belated retirement medal presentation, meet-ups in December & Christmas at our place & to celebrate my 69th birthday at the the end of November.

7. In early Jan 2019 a quick trip to COBLH to see my surgeon where he confirmed ‘extra skin’ was just that, not cancer…and that threw me for a bit (cancer as a possibility). It was good to think about it and consider gratitude and we celebrated an 18th Bday & our Feb meeting of CC HNC support group had a special guest.

 

8. And the memories of the 2 years before were strong but I gave myself credit for getting through tough times then and now. Meeting up with friends AND authors who are friends was fab! My mouth reality is here too. Bit graphic: Before Cancer diagnosed.

 

9. Celebrated my 2 years since diagnosis with my husband on 17 May and he said ” time for the Apple Watch you’ve wanted”. Recently I’ve helped share another HNC patient’s story for Beyond Five, met my daughter for Mother’s Day, had another CC HNC group meeting at the Cancer Council, saw my prosthodontist, my dentist too…and at the special celebration of Chris O’Brien’s legacy for Head and Neck cancer in early June at COBLH loved seeing my surgeon, Prof Jonathan Clark (who became AM from Queen’s Bday honours the next weekend!) and my HNC Nurse Practitioner Justine. I am so fortunate!!

 

10. My friend updated my image for the blog after it had been showing my way before cancer image for 4 years. Now, that feels more like me!

 

Denyse Whelan Head and Neck Cancer Patient now Ambassador.

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

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser was initiated in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here.  World Head and Neck Cancer Day is on 27 July.

Have you shared your snaps 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!

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

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

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

Having a CT ‘Surveillance’ Scan.

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

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

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

The First Week In June 2019.

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

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

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

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

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

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

 

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

Beyond Five. 

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

World Head and Neck Cancer Day: 27 July 2019.

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

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

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

 

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

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

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

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

Warmest wishes

Denyse.

 

 

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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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Two Years Ago: Before My Cancer Was Diagnosed. Series Concludes. 51/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Series Concludes. 51/2019.

This is the final post in the series of five.

Thanks to you all for continuing to read and comment about this very difficult time in my life.

It is only by the review of how it was, I can see and sense just how much I did endure before the cancer diagnosis!

In this month of May, I am reminded by the outside signs: weather, temperature, clothing AND the dates on the calendar exactly what is coming up.

The 2nd anniversary of being told I had cancer.

Wednesday 17th May 2017 at 9.35 a.m.

From the writing of the fourth part of this series till the timeline of this final post, I can remember:

  • trying my best to distract myself from the pain of the mouth after the extractions, thinking “this must be how recovery feels”
  • telling myself that I would be OK even if my emotions were telling me differently…via IBS and anxiety.
  • looking out for ways in which I could share on-line, via blogging and instagram to help me focus on other than my mouth
  • waiting for the first appointment in early/mid May to come so I could return to the dentist
  • keeping myself ‘busy’ with more learning about mindfulness, which included this:

Then mid-May arrived. I needed to visit my former GP on Wed 10 May 2017 to say farewell now I had found our new and current one close to where we live, and I needed some female tests done. I also had the appointment with the dentist on Thursday 11 May 2017.

This mouth of mine was so smelly, sore and downright worrying. I had not really shown the doctor even though I had seen her regularly for 2 years because it was not until the extraction on 6 April 2017 that much became visible.

Once I took the denture out, she GASPED and put her hands over her mouth. NOT a confident move but one I know was from shock.

This view spares you the details but it was no pretty at all. She made immediate arrangements for me to have a CT scan of my face – sinuses etc as she was thinking cancer and an OPG which is a special 360degree X-ray for the mouth. She knew I was seeing my dentist the next day.

Off I went home with a pit growing in my stomach…and of course, I could not think of much else. On the Thursday, I arrived at the dentist’s office with my little cakes and a card to say “thanks for caring for me at the extraction appointment”. Nice. Then it was his turn to express shock – but in a less dramatic way – after seeing the state of the gums AND to send me to the Oral Surgeon for a biopsy. THAT was sorted out very quickly when the Oral Surgeon saw me on the Friday 12 May AND could do the biopsy then. A sneaky suspicion I now have – in a good way – is that my dentist got in touch with her quick smart and said “asap” please.

Whilst I DID get through that Friday, knowing I had to wait till Monday for the results was H A R D…and it was Mother’s Day, 14 May 2017, on the Sunday. To be frank some family issues were making this a day that I was not looking forward to much but, as Mum, I did my best to cover my feelings. Not very well, though as even in this photo I remember all I was thinking about was the results the next morning. I did tell my daughter as she was leaving that I had some test results coming.

Monday 15 May arrived and once the time arrived that I could call to see if the results from the Imaging places were in, I did and I went to collect them: no sign of anything sinister. Breathe out….. Later that day the oral surgeon called with initial biopsy results …nothing sinister found….breathe out….and I called both my Dad and daughter with the news. My husband already knew.

Phew. Dodged that.

Not so fast apparently. It still did not make sense that I had this weird gum thing happening but I took the words of the professionals and believed them.

Wednesday morning, 17 May,  my husband was at Lifeline doing volunteer counselling and I was still in my chair, finishing off the morning paper after breakfast. The home phone rang and it was the oral surgeon. She apologised for the call, but had the detailed pathology report and it was squamous cell carcinoma in those nasty gums of mine. I was shocked but not surprised as I have said before…”it HAD to be something major”.

From then on, it was all-systems go…to a certain extent. I know I had to really get myself into headspace where I could deal with, of all things, the travel to and from Sydney the very next day…and the next two weeks and I did. Typical of me, on that Wednesday, after my husband arrived home and I had my big cry, I was able to go into organisation-mode, and call Lifehouse to find out who Dr Clark was (!) and to plan our trip. I did these trips and managed what I did thanks to my own work, my husband’s amazing support and our GP’s wise words and advice.

The rest of the cancer story is here….and these last words and the photo are of me prior to the first, big surgery in July 2017 and of my thoughts beforehand.

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

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.

  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?

  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.

  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.

  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.

  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.

  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 

  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 

  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 

  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

     

Thank you dear readers and commenters. It has helped me enormously to be able to document my cancer journey. At the time of publication, it will be almost the 2nd anniversary of my diagnosis. I am so pleased to be well and at this point. Incredibly grateful to many! I will be seeing my Professor, Jonathan Clark and his wonderful assistant Cate next week for what I hope will be a positive outcome and the intervals between cancer checks will spread from 3 monthly to 6 monthly.

I will have seen my prosthodontist on Monday 13 May so I hope that went well.

It did go well. I am maintaining my prosthesis well. Good news!

 

Yay for modern treatments in Australia and reconstruction surgeries that have enabled this senior citizen to have her ‘mouth’ as functional as it can be thanks to the marvels of modern surgeries and the healing powers of my body.

Denyse.

An unlikely entrant for Zen Tips Tuesday, I know, but I sure know I employed a LOT of skills to stay as calm as I could on this occasion in particular. Thank you Min for your link up here.

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

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Two Years Ago: Before My Cancer Was Diagnosed. Pt 4. 46/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 4. 46/2019.

I am heading for ‘crunch time’ now. It is almost the 2 years since I heard the words over the telephone:

“Denyse, squamous cell carcinoma was found in your gums after further investigation by the pathologist”

In the last week of April 2017 I did something very courageous…for the Denyse I was back then.

I drove to Sydney to see my father.

My anxiety and fear of IBS episodes had so built up in my mind, that I could not even fathom this trip from the Central Coast, down the M1 to Dee Why. It bothered me big time that I could not but it made me so scared just thinking about it.

“The willingness to show up changes us, It makes us a little braver each time.”  Brene Brown.

 

Then as readers from earlier posts know, I HAD to find the courage and it was via this: exposure therapy which over time, has become my way of managing the hard things. This is discussed in a post here. And here in part two.

Remember this is not an advice post, merely my story. Wikipedia has also provided a quote.

Exposure therapy is a technique in behaviour therapy thought to help treat anxiety disorders. Exposure therapy involves exposing the target patient to the anxiety source or its context without the intention to cause any danger. Doing so is thought to help them overcome their anxiety or distress.

From my post here:

My psychologist brought up exposure therapy as part of her helping me learn what I had to do next after getting myself more confident about some social things I had previously resisted. These included driving to Sydney and going to the Dentist. However, I was resistant to learning how it could help me conquer my fear about IBS and getting ‘caught’ short.

She outlined a list of 1 -10 and then asked me to tell her hardest (the 10 end) and easiest (the 1 end) activities I would be prepared to try and then to do them before the next session and report back. Exposure therapy continued to be resisted by me even though I had the knowledge, and a counselling-trained husband encouraging me. What to do? Nothing was improving, so I did some of the challenges at the easier end:

  • go out in the car about 15 minutes and not go to the toilet just to check I am ok,
  • go out again and not take an immodium in my bag just in case
  • go out for a longer time and not race home because it is too hard not to be sure about my IBS.

What does any of this have to do with my remembering the time two years ago?

It is a reminder for me, via the words and pictures, of how long it took for me to get my cancer diagnosis AND how hard it was for me emotionally to manage much of my day-to-day life BEFORE cancer came along.

What I see now, is how I did garner the strength and the courage, over time, via the help of so many:

  • People who had been through their own life challenges and as a result trained in psychology and mindfulness – these people are part of my “inner team” now as I did so much work with them on-line, via CD and streaming their podcasts and videos. I mention them here.
  • My husband, on-site caring and most knowledgeable person, who was not only training in counselling via a degree prior to me becoming very unwell but already had managed his own health issues over decades to the point of self-responsibility for his well-being and care.
  • My GPs and a psychologist who enabled me to see I “had this within me” but also gave me guidance and some appropriate medication to make my path a smoother one.
  • My friends on-line via blogging and other social media who supported my blog and the link ups, made connections via following and keeping me engaged at times I may not have wanted to but did anyway
  • Family and friends who understood this was a big transition I was going through – probably more than I would admit to – from 2014 to early 2017 and with added worries/issues I could not discuss, that worsened my reactions and ill-health for some time.

Thank you for your interest as I have found compiling this helpful for me to judge how far I have come!

There will be a final one in this series…sometime in early May 2019.

Denyse.

Joining  With Leanne on Thursday for Lovin Life link up here

AND with Alicia on Fridays for Open Slather here.

Thank you all for your link ups.

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