Tuesday 17th May 2022

What Is 17 May All About? #HNC. 5 Years. 32/2022.

What Is 17 May All About? #HNC. 5 Years. 32/2022.

It’s 17th May 2022 as I write.

I wasn’t planning a post but this date “made me do one”.

It’s because 17 May 2017 was a hugely significant day in my life, as it was the day I was told I had squamous cell carcinoma in my upper gums.

The story has been told in a few places, here for the first post,  by me, but today I want to use pictures more than words!

Marking the time I knew I had cancer.

 

My progress: 2017 into 2019

 

2019: 2 years ‘reward’

And going to Sydney to see Hamilton as my 4th year ‘reward’…very special:

 

Each May, I have both remembered and because of my relatively good progress with recovering from this form of cancer I had, I like to appreciate my teams and my healing body too. And to my husband and family and friends (on-line and off!) : you all help my healing with your kindness, love and care. Thank you.

And now: 5 years on.

I admit it feels somewhat surreal. Perhaps I couldn’t ever see it coming? No matter, it has arrived. I am here. I am very glad to be well. Here’s my photos from today: Tuesday 17 May 2022.

Special way to remember:

The word ‘heart’ means a great deal to me after using the song, Heart, as part of my self-care and courage building on my many, many drives to and from Westmead for long stays in the chair…and of course, heart is connection to those I love, and who love me…and the universal message of love is about caring.

My ‘gift’ to me is this: a bracelet with links of hearts and infinity symbol because love is forever….

Thank you to everyone from my heart.

Denyse.

17.05.2022.

Joining in with Natalie for Weekend Coffee Share later this week.

Thank you Natalie.

https://natalietheexplorer.home.blog/

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Five Years Ago. My Oral Cancer. #HNC. Part 1. #LifesStories. 31/2022.

Five Years Ago. My Oral Cancer. #HNC. Part 1. #LifesStories. 31/2022.

Interestingly there are hardly any selfies or images of me from before the cancer diagnosis. In fact, until I knew I had cancer, I was taking photos of nature a lot…as I tried to make peace with my inner stress. In fact, this photo, which is not too great, was taken on the morning of what would be the day of diagnosis as I was trying to make a daily photo of autumn challenge…it did not last!

Those who have been following me and this blog for some time will recall that in May 2017 I found out I had a rare cancer in my upper gums and under the top lip. I am now referring to the cancer as oral cancer, even though it remains as part of the head and neck cancer family. The full story is here. 

I was always going to write about this time…5 years ago…and here it is in the lead up to that day in May!

The bit of history behind the story is that I had been troubled by issues relating to soreness and some swelling in this upper gums that no doctor, dentist or specialist dentist could  find a reason for…other than keep it cleaner, use this mouthwash, suck these lozenges…..

And being the obedient patient…I did. Until I could no longer keep wondering what WAS hiding under the bridge of teeth. 

2017 was the year of more stress for me…and it was compounded by the pain and appearance of extra skin over the top of the bridge. My dentist, AB, was finally convinced by me, and he agreed that the only way to find out was the extract the whole bridge and the teeth. On 6 April that occurred.

By 26 April some of my bravery returned because that was ONE big thing I had done at the dentist, and I got over my fear of driving (IBS related) on M1 and saw my Dad after 4 months. This photo is the relieved me with a still painful mouth (that temporary denture was not fun) on my way home.

The person who takes lots of selfies not did not back then. In fact, I tried as much as possible to distract myself from worsening pain, gums growing and a general horrible feeling in my mouth until…

I couldn’t be distracted any longer and AB was seeing me after he’d been on holidays. But first, a visit to the regular  GP on 10 May who, after going through a few other health matters with me as I was leaving her practice for the one closer to home, THREW her hands up to her face when I showed her my sore mouth and gums without the denture.

Nervous? You Bet. Why?

  • Then Doctor, CS, who raise her hands in horror on Wednesday 10 May  and go “What…” and immediately tries, without success, to reassure you… “get to the dentist tomorrow as planned…and here’s form for CT of your sinuses….”
  • Dentist, AB, with whom I have a great relationship and joke a bit, says, seriously,   on Thursday 11 May “You need a biopsy of this from S. I already know that S is the Oral Surgeon, literally 10 paces back down the path from the dentist.

“right”, I say, with lots of questions but I hesitate to ask them…from my diary notes that day….

“Mouth – gums – inflamed & pretty puzzling to him . Going ahead with tests ordered. By Dr C – X-ray & CT (looking for cancer) 😧He mentioned HPV – what warts come from.. low immune system – maybe as I’ve been so stressed. Need a biopsy/ great not!
He said sockets are healing ok but slowly. Will see him after biopsy – which I have to organise.. he spoke of future might have to go to Westmead & I’m resistant”

  • Oral Surgeon. I meet SC on that Thursday straight after seeing AB…and she is very friendly and says, let’s do this tomorrow morning. OK…I say, but inside already feeling the stress of the tests at the X ray and CT place that will be in the afternoon.

But I Needed To See my “now” G.P. who’d been seeing me just on a month to de-brief…. Still “is” my GP…

Got myself quite stressed to point of tears after trying to make sense of what could be wrong with my gums so decided to see OG to catch him up due to transition from CS to him & having been to dentist AB.
He said tests are way to go & biopsy
Also said do anything different – dentist was keen for me to try more ibobrufen but that affects my gut.
He looked in my mouth & said it doesn’t seem worse than last week
He wasn’t convinced re HPV.
Couldn’t rule out cancer but getting tests essential & biopsy.
Once biopsy done & results in – consult with him & dentist.
He was kindly but couldn’t do much more do reassure other than I’m taking all steps he would suggest
Pretty stressed with it & so over it…

The thing is I had been putting up with much of this for 5 weeks after extraction and for months before that when no-one could give me answers.

 

Friday 12 May. How I Managed

….thanks to encouraging husband, who had to do his volunteer work for cancer council that day, my exposure therapy techniques, 1/4 valium, Immodium and sheer courage.

  • drove myself to Ourimbah (about 20-25 minutes from home) and arrived at Oral Surgery to be welcomed kindly by SC and her nurse.
  • straight into the chair. We spoke briefly. I knew there would be a numbing injection, then the biopsy (and I had one 2 years earlier).
  • once numbed up, SC did her work and then applied dissolving stitches and I was given kind care and told the results would be seen to as an urgent one…and I would hear from her on the Monday.
  • mouth was painful but at least something was being done. Some time at home, and tears too from the sheer weight of the emotional strain and then:
  • drove myself for the CT and Xrays. These were looking for cancer in the sinuses and jaw.
  • home….evening…tired out.

Sunday 14 May: Mother’s Day 2017.

Our daughter and three granddaughters came for lunch. I put on a kind of act I guess but in the photos taken that day, I see the strain in my face. As the family was leaving I just shared with my daughter that I was waiting on test results for my mouth the next day.

Monday 15 May.

I got the blog link up sorted, and live and my post had published. We kept to our housecleaning routine…although my eyes were on the clock and when I could ring the CT/Xray place. I did and was told all good. Come and collect them. Big relief: part one. Part two occurred later that day when SC, the oral surgeon rang to discuss the preliminary findings.

I remember thinking “OK, good but what about these horrid, growing gums”. She replied that over time she could help with cutting them back. And I accepted that for then, and because only our daughter and my dad knew I had the tests, rang them with the good news.

Tuesday 16 May.

A normal day in our version of retirement. My mouth was still sore but I felt relieved. I took some photos of the flowers in the back garden. I would have been getting back to my blog post and to those who linked up. Here is that post…just for the relevance…I did not return to writing Telling My Story for another YEAR! And here’s what happened next

 

Wednesday 17 May 2017.

B went to counselling at Lifeline. I was relaxing in my chair, just finishing breakfast when I got this call from the Oral Surgeon SC, who was working in a hospital at Wagga that day. SC spoke calmly and kindly, telling me that last night she received further results and she was sorry to tell me there was squamous cell carcinoma found in the gums. My initial reaction was surprise but not shock as something HAD to be found I guess. The time was 9.25.

And after a little weep, I was able to speak to lifeline, B came home and in the meantime my organisational self shifted into gear. SC had sorted a referral for a “Dr Clark” at Chris O’Brien Lifehouse. I rang his secretary and she said “His associate can see you tomorrow afternoon”. By this time, B was home and after a long hug, we agreed sooner the better…and took up that appointment.

I rang both my dentist AB and old GP CS to share the news. They were very kind and whilst they were sorry about it, there was a sense we were on our way to getting fixed/better….

My head continued to buzz big time and I wanted to share this HUGE news with my now GP, so we had a very helpful late afternoon appointment where his reassurances of me managing the trip would be OK…with the suggested immodium and valium…and B agreeing to stop at any toilet I may need…

Photo of my art:

And that is how I found out I had this cancer. I had no idea of why (there has never been a reason) but I learned over time, not to be concerned about that, just know you have this and that there are people with awesome skills who would  help me over the next two years in particular.

From my appointment on Thursday 18th May:

This is what they saw in my mouth:

This is where B led me to, for a brief minute’s respite to gain some composure after being given the news of what lay ahead for surgery. Window from level 2, Chris O’Brien Lifehouse, where clinic rooms are. This is looking at St Andrew’s College in Sydney University Grounds.

And this is what I signed….after having ensured I understood it all, as the Ass/Prof AE was concerned I might have been too upset. No, I said, I understand. It’s just been overwhelming….B had great confidence in the men he met…and still retains the same respect for them.

Some info: This surgery would not happen for another 7 weeks. I will write about that in July. But here is some information from my 2 and a half hour consultation.

Maxillectomy: we are going to take all of the upper part of your mouth inside. The jaw, the gums and remaining teeth and, oh yes, the palate or upper part of your mouth…

LEFT (in the end it was RIGHT, because CT found blood supply to be superior there, to lift the flesh with blood vessels…& skin grafts and dental implants…

(and funny story, it was ME sharing with them IN THE ANAESTHETIC bay some 7 weeks later, that the permissions were for left leg but they were using right…details me hey! Anyway, I was happy to comply with the written changes ON THE MORNING…waiting for THE SURGERY…and signed away)!

And the fibula was removed to form the jaw: all to happen in theatre and skin & flesh from leg would re-construct me an INSIDE of MY MOUTH….

Sneak Peak: I did not get to see how this looked until October after the first surgery! It blew my mind!

Image via CT..top is my upper jaw and 3 sections of bone from my fibula with 5 implants

Thank you for reading this far…if you did…and I will return with some 5 year updates that have meaning for my life now, in recovery and someone who has had cancer. I tend not to use the survivor or any warrior type words.

Denyse.

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Confidence & Why I Need It. 29/2022.

Confidence & Why I Need It. 29/2022.

Quite some time ago, in late 2017 and into 2018,  I was recovering from a very invasive and nasty cancer which resulted in all of my upper mouth being removed (to make sure the cancer in both the jaw, gums and under top lip was gone…and it is!) and I needed to make myself a routine of sorts once I was back into more independent living.

From May 2017 until around late October that year I was fully present …in learning how to eat, drink and speak following my oral cancer diagnosis and treatments of surgeries, AND to be able to ensure I was OK to be well and truly independent outside the house.

I was so ready for this but in October, after seeing some posts relating to Outfit of the Day and Dressing With Purpose, I decided to adopt those plans and incorporate them into my day:

  • Get Up, Make Bed & Have Breakfast
  • Take some time to enjoy social media and blog and chat with my husband
  • Plan to go out somewhere for a coffee each day
  • Use this to Dress With Purpose
  • And show my self to the world via Instagram…..

I admit, it was so helpful for my mental health, and as the skinniest* I had been since early 20s, I did enjoy finally being confident enough to buy good fitting underwear and clothes for this new-to-me body.

The very first outfit shot. Off to hairdresser’s.

I use this term* with slight reluctance as I hate being defined by weight..life history is part of this. My need to show my body to the world had two motivations back then…1. I was going OK and 2. I could dress with some confidence again and took pride to be able to do so.

Now, as I write in May 2022, I see I looked ok but also getting well was a hard lot of work that I needed to let my body do.

What Happened Next.

Into 2019 I decided to stop the regular posts.

I think it was about not flooding the instagram account with same old same old…but now I think about it, I also was having some negative thoughts coming back into my inner life. 

Ones like:

  • Oh you can tell you have put on some weight
  • Are you sure you look OK…
  • I wouldn’t be sharing these as much as you will be noticed for negative reasons….

The Why and The What of 2020 into 2021.

Covid happened.

I got to have some surgeries…not cancer related and they had some challenges for me personally as recovery from the major abdominal one was complicated. I had some negative feelings about my appearance. That I was getting too fat and I became hooked on this negative thought.

Sigh.

I found my view was skewed. I had certainly added kilograms to my face and frame from those very early post cancer surgery days. Not eating much because you can’t will do that…. But I also knew that with some covid times, I ate more for comfort.

What did I do? I actually cut back some of the amounts of food without sacrificing nutrition or treats because I do not do deprivation! And over a few months a few extra covid kilos were shed and I was back to my days of 2018-19 weight wise. So, go me. And I am not scale dependent any more on how I feel about myself.

It was hard though to have reasons to dress with purpose during lockdown and then afterwards but just recently, with more confidence mustered I wrote this on facebook and instagram and received kind and positive responses.

My Facebook & Instagram Post. 1 May 2022.

Amazing what some confidence returning will do for a person.

I’ve been less than confident about my ‘appearance’ most of my life. But when my oral cancer diagnosis happened, and then surgeries x 4, I made myself #dresswithpurpose #takedailyphoto and get out into the ‘world’ for a walk, a catch up, a coffee and it didn’t matter that I had no upper teeth till August 2018.

I lost some confidence to continue this practice consistently thinking it had served its purpose for me: – letting people know I was doing OK – getting out and about – enjoying wearing ‘new for me’ clothes and styles.

Then came 2020 and into 2021 and now, we are one third of way into 2022. I needed to remember how confident it helped me feel in my “less than wonderful” days following surgeries and treatments, to dress well…and have a photo and go out.

Now, I have re-started it. Coming up to 5 years since my diagnosis on 17 May 2022 and I am using this month to celebrate my life, my changes and my health.

I am very grateful. Always.

Now I am putting me, the 72 year old version, out there again. And quite enjoying it. Even for a morning doing mundane things, it helps for me anyway, to look OK. Thanks for your support too friends and family. Always appreciated. The photographer is B who is not on FB. When I smile, it’s at him! That is LOVE!!

Why I Need Confidence Now.

I won’t be believing those intrusive and untrue thoughts any more

As an older woman I will continue to champion myself as I age.

I will, from time to time, add posts of my daily outfits on social media.

My budget may be tiny but I have a sense of colour and style so I will do well at making some good combinations.

I will remember this time in my life and appreciate that I can make changes for good.

Now, do you have confidence about your appearance?

Do you like to dress with purpose?

I am very interested in your comments!

Denyse.

Joining in with Natalie for Weekend Coffee Share later this week.

Thank you Natalie.

https://natalietheexplorer.home.blog/

 

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Being Me & The Month That Was April 2022. #WOTY. 28/2022.

Being Me & The Month That Was April 2022. #WOTY. 28/2022.

Word Of the Year Link Up Party.

Joining in with these kind bloggers:

hosted by friends Deb, Sue,  Donna and  Jo too.

You too can join in, clicking on one the above links:

Look for this image, and add your post.

 

April 2022: Being Me & The Month That Was. 

April started for ‘being me’  with less self confidence and some inner conflict.

I have been at odds with my perceived appearance (once a woman with overeating and overweight issues) that I could not shake. I needed evidence. Fortunately for me, and my current images, I now know my mind has been telling me stories. Who knew*? *sarcastic font.

And that was one of the reasons, lack of some self confidence,  I chose to make myself (and anyone who wanted to join in) a 30 Day Challenge via social media. Instagram specifically.

Being Self-Compassionate!

Dear Readers, I stopped the challenge at Day 20. I was getting little to no  engagement via my daily posts. And whilst I was wanting some likes and perhaps a comment, nothing happened. I like to engage with those who comment. So, I was a bit sorry that it did not happen. I was also taking part in a daily challenge from Fat Mum Slim about food, and using it to share knowledge and experiences from my head and neck cancer. And I stopped it at Day 20 as well.

 

Lesson learned: Perhaps I post too much and perhaps with an expectation of interest in what I post. But I can see, that having a private account, along with content that my on-line followers have seen enough of since 2017.

I am unlinking instagram from the blog as it truly was a nuisance with its updates. I am now just posting on Instagram when I have something I want to share. I have also unlinked Instagram from the Denyse Whelan Blogs facebook page. AND, in case you are not aware, I have deleted as many photos as I wanted to because Meta (owner of both FB and IG) own the images until you delete them. It takes a while to do it. But I didn’t want as much on line.

On Changing & Ageing…Being Me.

It’s all very well for people to say, “oh age is just an attitude”…and yes to an extent that is true but to deny the fact that we humans age in many ways (all different for each of us) but towards the common denominator called death, is for me and my husband, a non-realistic way to LIVE in the NOW, but keeping an EYE on our future.

What We Both Love About This Time Of Our Lives Is:

  • being together for parts of the day, week and so on
  • having some separate and private times
  • pursuing our differing interests and hobbies
  • coming together a few times each day, and at 9 p.m. to chat, laugh and listen
  • no one to answer to any more…no bosses!
  • lack of direct  responsibility for any other humans…those dear kids are in their 40s & 50s with our fast growing up grandkids as their responsibility
  • where we live now
  • having a limited but sufficient income with which to live our now modest lives

We went to Norah Head Lighthouse on Good Friday.

What We Accept Is Coming…one day…who knows when?

Our different and chronic health issues may impede some of our planning.

Already we have accepted that for two different reasons, both physical changes within us, we cannot travel or have a night staying anywhere. We both have eating and digestive issues that are managed with ease at home, and whilst we can venture to a cafe for morning tea or visit our family for a meal, that is it now.

My husband has a severely comprised spine – surgeries have helped him stay upright – and pain is with him 24/7 so he is most comfortable at home with all the needs met here. And of course, my reconstructed mouth means eating away from home is in fact, too hard!

I tend to want to know, research and read…(and listen if it’s via Audible) and “he” has learned so much in his University Counselling Degree and working as a Counsellor that he listens to me and nods ….because, dear Reader, is he WISE!

Mind you, we both do still learn from each other and he is understanding of my need to know and with my father’s age at 98 I have seen so much about ageing as it happens to him..I want to understand more about what it not only IS but what I can accept…so, learning for life me, learns! Here’s a few ways:

And this is truly BEing ME!

BEing Me.

Has changed considerably this year.

For the better.

I have, finally, taken stock of what was causing me some anxiety and worry and stopped being an always happy to say YES person.

I now have worked out whose health matters most, mental and physical and that is mine.

I know not everyone can see why I might now have changed but I have had to change.

I was being stressed over small matters that grew into big ones and they were, generally about people-pleasing.

It’s something I am more aware of now and seek to take a pause before I respond to something that perhaps I may have said yes to in the past.

On some occasions I wear my family circles but every day I wear this, a small heart within a heart to remind me of inner and self love.

Now, back to April: The Month That Was.

And some more:

I have visited Dad more often as the weather has brightened and he is needing company. I also bring little treats and food.

He no longer wants me to take photos of him but when he went to my brother’s for Easter, this image was taken and I love it….will be taking a copy “blown up” so he can see it next week. This is his youngest great grandchild and there is 97 years and 4 months difference in their age!

And that, my friends is April…..Word of the Year progress noted….and on Sunday it is May!

May, for many, can bring memories of Mother’s Days…and mothering, and grand mothering too if you get to do that.

It’s the month in which my oral cancer was diagnosed and my life changed from that time onwards.

Yes, there will be a post (or two) in May about it….

Take care,

Denyse.

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