Monday 27th June 2022

My A-Z. Taking Stock. 5 Years. #HNC. #LifesStories. 34/2022.

My A-Z. Taking Stock. 5 Years. #HNC. #LifesStories. 34/2022.

This is my first Taking Stock post in 2022 and I am taking the chance to recount the “adventure” that has been having had oral cancer, a form of head and neck cancer, for 5 years.

Here is mine. And the new-to-me logo and the list is at the end of the post for copying if you choose, along with this image being in the side bar of the blog.

 

But first, a story that is funny. Well, at least “I” think so.

When I saw the kind blogger Deb from here: Debs World paying tribute to my version of Taking Stock recently I was chuffed. Deb has been doing Taking Stock, the traditional one from Pip Lincolne , found here, along with my new-to-some A-Z version. I checked my list of prompts out, and the image I had on the blog…..and counted: 1 to 22…ummm there ARE still 26 letters in the alphabet, Denyse…so, oops, I have now amended!

And as I am off to see Dad again today in Sydney, I will be back to read and comment later.

2017 to 2022. Taking Stock of my Head & Neck Cancer. 

admiring the amazing ways in which my head and neck cancer team reconstructed inside my mouth

becoming more at ease now with the idea that my five years since diagnosis and surgeries and all are coming to an end in September 2022 at my final surveillance visit to my head and neck cancer team

curious to see how my continued mouth and prosthesis checks will go each 6 months for the rest of my life I am told

delighted that, in the course of head and neck cancer journey I have made many new friends and connected with them virtually or in real life so we support each other

excited to see my Professor Jonathan Clark AM and his surgical Nurse Assistant Cate Froggatt in September but 

feeling quite emotional as it will be my last ever surveillance check with them at Chris O’Brien Lifehouse

going is a useful word to use post cancer recoveries because I always say “I am going well” …covers a myriad of possible answers but requires little response because quite honestly, HOW MUCH do I really want to tell people..not a lot. I fear it may not be 

helping me or them to be perfectly honest because in the end sometimes a polite response is the best

imploring those who follow me to get a mouth check at each 6 monthly dental visit. Please do get to your dentist every 6 months. And also, see your GP about any suspicious pain/lumps/bumps too:

See here, and at the end of this post….

 

joking at times is an Aussie way of dealing with some really tough times isn’t it? We tend to play down what we find the most threatening. I admit, I was told, now I realise it was a joke, four years on, that when I got my upper prosthesis (teeth attached to the jaw that was made for me from my leg), that I couldn’t leave till I bit into an apple. Seriously. Nah, it wasn’t and no I cannot even do that these days….

knowing I was in the best place for me with the best people possible for my cancer filled me with both hope and confidence. Always.

loving that I could always get my surgeon into a selfie with me at our visits…

Prof Jonathan Clark AM.

making the most of my understanding of good health nutritionally as well as enjoying the food I can actually eat by paying attention to my health professionals after the first BIG surgery because they knew more than I did.

Ready….for the video made for head and neck cancer Australia with me sharing what I had learned from the dietitian.

next is to note how very proud I am to have come through such challenging health times (they were!) and yet I know now so much more about myself as a woman of strength and courage that may not have come about as they have…

observing that there is a fine line between being grateful for life lessons (this was a major one) and also that it has been so fortunate too that my cancer is as I understand it rare of rare (thanks Prof JC) and unlikely to return

posting on the blog has been a great way in which to let me share my feelings and experiences and also for others to support and cheer me on, and it is now a bank of posts under this heading for others looking for head and neck cancer information

questioning that this cancer is so not known and yet it is very much more common than realised, and many people die of a head and neck cancer because symptoms may have been ignored or dismissed by a medical or dental professional, so it’s why I continue to share, and hopefully a person …

reading this or a tweet or a facebook update may have information that is relevant to them or someone they know

staying  vigilant about my mouth care. I need to see my regular dentist every 6 months and the prosthodontist in Sydney too

trying to be less head and neck cancer focussed in my day to day life, which is why, when I became somewhat burnt out last year doing too much physically and emotionally sharing HNC news, that my…

understanding G.P., husband and CEO of HANCA were very kind in helping me see that I could still help and have some roles but no longer in person

viewing my images. I remain pretty obsessed with my changing face, smile and mouth over the years.

2017. July Major Surgery. Nov Day Surgery

2018. Day Surgeries: Feb & May. Upper Prosthesis August.

welcoming the ways in which people who don’t know about my oral cancer story can be informed more if they show some interest

X – you choose and mostly they do, and with my education love at the heart of what I do I am always there to say,

yes what would you like to know more about

Z – you choose and if there is no interest of course, I am respectful of that person. And, I sip my double shot small latte quietly!

Love this again: coffee sitting at a cafe. 2021.

Sunday 22 May, at Porter’s Creek I made this little 13 second video of gratitude:

https://www.youtube.com/shorts/WlluRTC6OhM

 

 

That’s my Take for Taking Stock.

Here is the list for anyone who would like to try it.

  • admiring
  • becoming
  • curious
  • delighted
  • excited
  • feeling
  • going
  • helping
  • imploring
  • joking
  • knowing
  • loving
  • making
  • next
  • observing
  • posting
  • questioning
  • reading
  • staying
  • trying
  • understanding
  • viewing
  • welcoming
  • X – you choose
  • yes
  • Z – you choose

Thank you for reading, commenting and also linking up a blog post if you had the chance!

Denyse.

Denyse Whelan Blogs Is a Community

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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.

Denyse Whelan Blogs Is a Community

You can link up something old or new, just come on in.

* Please add just ONE post… NOT a link-up series of posts, thank you.

* Please do stay to comment on my post as I always reply and it’s a kind thing to do!

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

*You are welcome to add my link up’s image to your sidebar or let others know somewhere you are linking up to this blog’s Life This Month

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

*This link up opens at 5.00 a.m Australian eastern time on the Mondays of dates on Home Page, and closes at 5.00 p.m. on the Wednesday of that week.

*I commit to visiting your blog and to  comment on your post.

Denyse Whelan.

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Three Years Ago. Head & Neck Cancer. October 2017. 83/2020.

Three Years Ago. Head & Neck Cancer. October 2017. 83/2020.

For this week and the next 2 weeks each Wednesday I am posting a ‘review’ blog post mostly to remind ME of how far I have come in terms of the changes brought about in my life thanks to the diagnosis of head and neck cancer on 17 May 2017. The whole story is here. 

Using some photos I am adding my memories from the time.

Here I go:

October 2017.

 

The way in which I recorded the times. My husband kindly took photos of me outside Chris O’Brien Lifehouse on the afternoon of our visit as a check-up in October 2017. It was the first time I had seen my head and neck surgeon since leaving hospital in July after the first major cancer removal and mouth reconstruction. Of course I brought cake! Cake is my appreciation gift to my medical and surgical professionals. What I see in ‘me’ is the way it was then. I had no way to smile and it was probably because of seeing photos like this that I finally went and brought properly fitted bras. Sigh. The photo of the drive back home over the Harbour Bridge is a great memory. One of relief too. However, glad I have this as we can no longer use iphones in cars without risk of huge fine.

 

 

 

Seriously I was gob-smacked at this image. WOW. My fibula, the shapes at the top, cut into 3 pieces and made into my new jaw by being attached with screws to under my cheekbone. The little dot-type images: one at the front, two on each side, five in all, are where the screws are embedded into my new jaw and which will, over time, hold the upper prosthesis I have now in place. This was so good to see however, as it showed just how clever my team is!

 

 

 

The first time I ventured down the M1 alone that October was for a very good reason. To meet up with my daughter and her two eldest daughters for morning tea at Hornsby Berkelouws. It is a favourite place to meet because it’s about an hour from our place and reasonably convenient for those who live in Sydney to meet up. I was still very new to what I might eat/drink but I managed a piccolo and a very small cake with icing. Lovely as always to see the family. I admit I was tired out. Pretty big deal only two + months since my big surgery.

 

 

 

Our daughter. Very proud of her. This lemon meringue pie – a firm family favourite – made ‘just for her’….to celebrate her completion of her Master of Education Teacher Librarianship. It’s pretty tough being a single mum to 4 and working generally full-time as a teacher and then teacher-librarian too. Not only that, she started a new school’s library. One book at a time. Many hundreds of times. Eventually to complete the last semester of the pretty gruelling regime to do a Masters on-line (and to keep her job) she took long service leave and “got the job done.” She and the four kids (3 are adults) joined her in the celebration of her achievement at Charles Sturt University Graduation Ceremony later in 2017.

 

 

 

In late October I decided I needed a ‘challenge’. A personal one. It seemed that I wanted to show off this new-to-me slimmer body and the enjoyment I was beginning to find in looking for clothes that actually fitted me. Of course, my weight loss was because 1. cancer and 2. I couldn’t eat properly but I was also not allowed to lose any more weight by my professional team. This instagram challenge took on a life of its own and over time I did this every.day. for many, many days as it helped me emotionally to see my improved look and demeanour despite the ravages of how my mouth had been reconstructed using part of my leg.

 

Glad to have shared this. I know long time readers may recall some of these images. Thanks for reading and commenting.

 

Denyse.

Joining Leanne and friends for Lovin Life Linky here. 

Joining here too: Esme’s Senior Salon link up.

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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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