Tuesday 28th 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

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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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