Thursday 26th May 2022

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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Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

Head & Neck Cancer: My Life Now: 3 Years On. 41.1/2020.

In April 2017, after much searching for “why” my upper gums and palate were so sore, swollen and inflamed, I insisted that my dentist “take the bridge and teeth out, please as…I need to know what is under it.” That was done after almost 3 years of “wondering why” and being told many different reasons by dentists that it was most likely candida and “you are not keeping under the bridge clean enough. Sigh. This story can be found here along with many as I have journaled the Head and Neck Cancer story here on the blog.

On 17 May 2017, after the removal of bridge and teeth, with worsening gum conditions, I received what was, in many ways, the answer I feared or at least had considered over the past year or  more before. Yes, it is CANCER and it is called Squamous Cell Carcinoma and off I was sent to the BEST place and people ever for more diagnosis, subsequent surgeries and much much more.

 

Summing up each year as a head and neck cancer patient with a rare diagnosis. 

2017.

May & June: Meeting my surgeons at Chris O’Brien Lifehouse. Examinations, testing and discussion on maxillectomy and using part of my leg. Visits to Westmead Oral Sciences for future mouth reconstruction preparation. Waiting. Testing. Being very concerned but at least I had the answer!

July: 7 weeks after diagnosis the major surgery of 11 hours. ICU and then recovery in single room at Chris O’Brien Lifehouse. This was for 10 days. Learned that I recover well and that I could speak (hallelujah) and eventually swallow water with no problems. Home. Learning to live much differently. Back for checkups: particularly of my leg which had donated skin and flesh.

August: September: October: at home recovery, lots of community nurse visits, learning how for eat differently and prepare food for myself. Independent walking then became driving the car again Back for a post-op check and to hear what was next.

November: On the day the same sex marriage result was announced I went into surgery for more skin to be added inside my mouth: taken from my thigh. It was all part of hopefully allowing my mouth to eventually settle to take a prosthesis of teeth.

It was announced I would become a Community Ambassador for Beyond Five.

December: watching progress of mouth and sending photos of the inside to my lovely Professor Clark for him to see it was going OK. Always relieved to hear back ‘yes.’

2018.

January: continue as for December.

February: third surgery. Adding a stent into the top part of my mouth to allow skin to stretch and eventually be able to fit in the prosthesis of teeth. Alas, this failed as the stent was removed too fast by my prosthodontic team much to my professor’s dismay and…..

March: I got the news a fourth surgery would be happening. Initially not happy at all, but realised it was inevitable…and my mouth was particularly challenging as they try so hard to work with ‘what is’ to have me look as much as possible as I did post any head and neck surgeries.

April: more time for me to see the prosthodontist to check the healing mouth and for my team to consider what would be next.

May: almost 12 months from diagnosis, back to COBLH as I call it for short….and a much bigger stent added in another 2+ hour surgery. Wow. Thigh gave up more skin for inside my upper lip.

June. July: So many drives back and forth to Sydney for prosthodontic work: measuring, practising with models of prosthesis with the eventual promise of teeth up top…..

World Head & Neck Cancer Day: July 2018. Held a virtual Soup for the Soul a fundraiser for Beyond Five and met the Central Coast Head and Neck Cancer Support Group at Gosford and became a member of this group.

21 August; Yes. Upper prosthesis fixed into the abutments and I had a smile back (a good one too, thank you team) after 14 months.

From then until next year, 2019, I had a considerable number of visits back to Westmead with adjustments and I learned ‘how to eat’ with teeth that were nothing like how my mouth had been post-cancer. More on the page as linked before.

2019.

January. An unexpected visit to COBLH for my head and neck surgeon to examine ‘extra skin’ which had begin to grow near the abutments on one side. This visit, as I found out directly was to ensure “cancer had not returned”. OH. It had not but it threw me a bit because I had not even given that a thought. This was when I realised CANCER is never far away from our thoughts.

February, March, April: some visits to both professionals in my team. Making adjustments and checking progress of skin inside my mouth. I admit I was often nervous of outcomes as my mouth was pretty sore most of the time. No-one could tell me ‘how long’ that would last but I continued to be reassured by my prosthodontist in particular “everything looks OK” “you are doing a good job keeping the area clean.”

May: 2 years since diagnosis and I was proud to have made it. I was incredibly grateful to my body for healing well and to all who cared for me and in particular to my patient and good listener husband.

End May: CT scan showed “all clear”

June: Visits became more spread out to the surgeon and prosthodontist and I navigated using these teeth to eat. It was and is a challenge. My right leg had some changes from the loss of the fibula as my right foot became affected with gait. But all OK really.

July: Continued visits to Westmead and put my energies into blogging about Head and Neck Cancer, interviewing a patient for Beyond Five and being part of World Head and Neck Cancer Day at Gosford Cancer Centre.

August, September, October, November, December. Regular check ups and visits to COBLH and Westmead but longer intervals. In October it was raised by my surgeon that a possible fifth surgery could be planned if mouth needed it but he had no real plans for it at that stage. Continuing to help raise awareness of head and neck cancer in various forms via social media. In November I celebrated my 70th Birthday!

 

2020.

January: continuing own care and progress at home.

February: visit to the prosthodontist where he was pleased with how upper gums were looking. I admitted to him my concern there may be need for further surgery as outlined by my surgeon and he took photos and would confer with him as needed. Took part in filming for Beyond Five series of nutrition videos for head and neck patients, carers and professionals.

Early March: Saw my head and neck surgeon who was delighted with my progress, no surgery needed and I remain “his poster girl for recovery”…see you in 6 months!! I was a guest speaker at a Charity Ball held by 4 doctors at Avoca to raise awareness of head and neck cancer and aid the work of Beyond Five with a generous donation.

And then COVID-19 stopped us all in our tracks for quite some time.

End May: as I write. My prosthodontist should have seen me for a check this coming week but Westmead is not open for regular visits yet. I am not concerned as my mouth is OK. I am not due to see my head and neck surgeon till September. I am going to my dentist here (the one where we got the diagnosis sorted!) in early June as he ensures the 8 teeth I have remain in good order.

Record Keeping: For Me!
Visits to Prof Jonathan Clark: Chris O’Brien Lifehouse. 2 hours each way by car. M1.
2017
Diagnosis: 17.5.17.
18.5.17 (diagnosis: surgery plan w A/Prof too)
6.7.17 (surgery #1 in COBLH)
27.717 (post op: A/Prof)

10.10.17 (cancer check)
15.11.17 (surgery #2: day. Down & home same day)
20.11.17 (post op)
5.12.17 (post op St George)

2018
7.2.18 (surgery #3: day. Stayed night before)
14.2.18 (post op St George)
1.5.18 (pre surgery #4)
16.5.18 (surgery #4 day. Stayed n/b)
2.10.18 (cancer check & upper prosthesis)
– long time between checks as I was seeing Prosthodontist a lot!

2019
8.1.19 extra cancer check: skin growing ok
19.2.19 cancer check
21.5.19 cancer check & CT done. All clear.
24.9.19 cancer check

2020
3.3.20 cancer check.

17 total to date.

Next due: September 2020.

Visits to Westmead Prosthodontist. 2 hours each way by car. M1.

2017  24.5.17 (pre surgery #1)30.5.17 6.11.17 (pre surgery #2)

2018  23.2.18 (post surgery #3) 1.3.18  7.3.18  15.3.18

22.3.18 28.3.18 12.4.18  28.5.18 (post surgery #4) 31.5.18

12.6.18  15.6.18  18.6.18  25.6.1  3.7.18   10.7.18   16.7.18

23.7.18   6.8.18   9.8.18

21.8.18: Upper Prosthesis Issued

28.8.18  10.9.18   25.9.18 8.10.18 (lower denture prep)  25.10.18

5.11.18  15.11.18  19.11.18  27.11.18   11.12.18

2019  21.1.19 (unscrewed UP)  4.3.19

13.5.19  16.7.19  5.8.19

17.9.19    25.11.19

2020 17.2.20  41 to date  Due: 25.5.20 (postponed due to COVID

What is life like for me now as a head and neck cancer patient…over 3 years later?

  • I think about my cancer less
  • I maintain my cleaning of the mouth more willingly and never miss it because I would hate the spoil all that hard work!
  • I accept that whilst I have ‘teeth’ on top that look fine, they do not function nearly as well as natural teeth.
  • I know how to allow for that more these days in terms of food choices.
  • I am more grateful than ever to have had such a cancer experience so that I can share, help and be part of a community which may need assistance from a patient like me
  • I am less fearful of cancer’s return but I am never complacent
  • I do my best to help others who may find my story helpful
  • I blog less than those initial 2 years but maintain the updates about head and neck cancer as it is for me
  • I connect with others on-line to encourage, share and offer support where it may be needed
  • I like to help where I can to keep the messages of head and neck cancer current
  • I do this via my social media and re-sharing words, links and information from Beyond Five
  • I maintain social media connections via a facebook group from New Zealand for head and neck cancer patients, carers and families
  • I am willing to share my story for others: meeting them, making a speech and connecting via emails and on-line

However, I am less the ‘head and neck cancer patient’ these days.

I am more Denyse, who is a retired K-6 principal and teacher, wife to B, mother to K & M, and Grandma to eight wonderful grandchildren. I remain passionate about education: of the self, and of kids…and support on-going education at any age. I love to connect via my blog, meet up for a coffee and cake, take photos to share on instagram, make art in all kinds of ways….and get outside to be “oh so thankful” to be here…to be well….and to share!

Denyse.

23 May 2020.

Written, in part,  in readiness for World Head and Neck Cancer Day in July 2020. Events this year will be virtual and I am sure, I will be sharing more as time goes on. For now:

 

 

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