Sunday 22nd May 2022

About That Smile. Mum & Memories. 28/2021.

About That Smile. Mum & Memories. 28/2021.

Why pink?

Why not…actually because remembering Mum, who died 14 years ago this week, bright pink was one of her favourite colours. Not being too maudlin about it, this was the best photo of her in her last months, taken at my parents’ Diamond (60th) Wedding Anniversary Lunch with family, and it was the outfit we chose for her final journey. The photo which sat atop her coffin, is in Dad’s place and is one I feel privileged to have taken. It was of “just” Mum edited from this photo.

Why memories?

On 5th March 2007 Mum finally died following a relatively brief illness based on a January 2007 diagnosis of secondary brain tumours. For a couple of years before that however, things began to shift and change for Mum in her body and her demeanour but none of us, including her G.P. of many years and neurologist treating her for a parkinsonian-type condition knew what was actually going on until a CT scan followed by an MRI. More details here. It was, an awful time for her, Dad and those of us who loved her as Mum, mother-in-law, grandmother and great grandmother.

Why smile?

It’s her smile, I believe, that I have inherited from her and although we are/were totally opposite in many ways, we were both able to find something to smile about when with family, friends and especially when meeting new grandchildren!

Circa 1969.

When I Could NOT Smile.

I know I have much to smile about now and will always appreciate getting my smile back after head and neck cancer. But I know when I was anxious and sad in the years 2014-2016 I would do what I could to summon a smile…especially when I was with my grandkids, and this one in particular. Miss J. has, I say, inherited my smile and that of my mother. We say this anyway!

With Miss J late 2016. Before my cancer was found “under those fake teeth”

A visit from J always included a selfie post my cancer surgeries.

My first social outing following my 2017 cancer surgeries: to Miss J’s 21st!

And now.

SMILE is my Word of The Year. 

I wrote about why it is the word of the year for me here. I remain glad I have!

So you smile naturally or is it troublesome?

I know I was more self-conscious in earlier times when I felt my size and the way my teeth looked affected me, but I had to change that internal story somewhat or there would have been NO photos of me at all!

Thanks for the memories and the smile, Mum!

Denyse.

Joining with Leanne here for Lovin’ Life linky on Thursdays.

Joining with Natalie here for Weekend Coffee Share.

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One Year Ago. Head & Neck Cancer. October 2019. 87/2020.

One Year Ago. Head & Neck Cancer. October 2019. 87/2020.

For the past two weeks, and now concluding this week, on a  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 2019.

 

 

I was very well by this time one year ago. I did have a cancer check in September 2019 and all was good and I was told, see you in 6 months. That brought me to the early March 2020 appointment which was held in “just before COVID times locked down”.

 

 

I was getting myself ready to celebrate my 70th Birthday at the end of November 2019, and had a little look at young Denyse who began loving cake…waaaay back. Mum would have made this. She did not really enjoy eating sweet things but she knew how to bake them for the rest of us.

 

 

 

Just before October 2019 I found out about two other patients with head and neck cancers who also had the privilege of sharing the care and treatment of “my” Professor too. These people found me via formerly Beyond Five..now Head and Neck Cancer Australia, and then read my blog posts here. They reached out to me. One I got to meet in person. The other, another teacher, and I will catch up once we are on some kind of holidays at the same time. Head and Neck Cancer, is as I read recently a lonely disease. It is always good though to meet up with others who understand. The health professionals too as they get to see progress within us.

 

 

 

 

I did have a special and kind friend from my world of art die in early October 2019 and on the day of her funeral, I went to a favourite place of mine that she also loved me sharing, the ocean and thought of her and her family.

 

 

 

 

My gratitude for having an open space by the ocean is well-known. I have, since moving nearer the coast, found solace and a great sense of peace walking on the beach and in the water. The beach I loved doing this has, thanks to the ways of the ocean, become almost inaccessible to people who are older and with a compromised right leg (fibula-less) I won’t go there unless I can access it with ease.

 

I drove to Sydney’s Dee Why to visit Dad in his independent retirement unit in October. He must not have wanted a photo that day. Here I am before leaving home.

 

Later, I drove as I often do, past South Curl Curl beach and stopped to have a little walk. It was a magnificent day. And when I did see Dad in October 2020 he agreed to this photo! He turns 97 early next year.

 

What have I learned in doing this series?

That for me, things got better and better.

They also were very hard on some days to tolerate. Many of those days were long, boring, painful and challenging as so much depends on T I M E to heal.

Yes, that old adage is true…time heals all wounds.

So, as of NOW: October 2020, I am a very well person. Go me.

Actually, also ‘go my husband’ who has had to listen to ALLLL  of the stories from me.

On Saturday 17th October it was 50 years since we met. As this post goes live, we will have travelled to the north west of N.S.W. to the city of Tamworth where we met. We plan to have a couple of days going to towns that were of great significance in our early single, then married lives. There WILL be a post about that you can guarantee it. 

 

I have had a very challenging year in some respects in 2020 with – as for everyone:  COVID 19 and its various means of changing our lives….

  • specifically for me it has been a year of ‘getting more medical and surgical things’ done. I had to concentrate on head and neck cancer until late 2019 so in 2020 there are no more excuses.

 

  • In March 2020 I had both eyes cataracts removed and no longer need glasses for distance or driving. Still for reading but at a lower prescription and I need sunglasses out in the sun.

 

  • In July, and then into August 2020 I had a rectal prolapse surgery (planned) and hernia repair (unplanned). There was a wound healing complication after 5 weeks and I needed further surgery to debride the wound and then  T I M E and a VAC machine and wound changes till all finally healed by October 6. BEST news ever!

 

  • Well, there was more too! Early September, when I was still attached the the VAC machine, my husband drove me to my Cancer Check with my surgeon and nurse, and all was so darned good, I got the news that floored me…”see you in a year.” And….

 

  • On 15 October my prosthodontist checked out my upper prosthesis and declared I am maintaining the area very well indeed! I don’t need to return to see him till April 2021.

I love these images…me with my health professionals. I love that they agree to having their photos taken too.

Check Up with ColoRectal Surgeon

Head and Neck Cancer Surgeon & Me.

With My Prosthodontist

This is why I blog. It is so helpful to share with others and it is a great record for me and my progress.

Thank you for your interest, I appreciate it.

Denyse.

Joining Leanne and friends for Lovin Life Linky here. 

 

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Taking Stock #3. 27/51. #LifeThisWeek. 54/2020.

Taking Stock #3. 27/51. #LifeThisWeek. 54/2020.

Where Am I….

How Am I

What Am I….

Why Am I….

G R A T E F U L.

 

 

 

As it’s been the practice for Taking Stock in 2020 I found the photos to represent the prompts. They are not in prompt-order. Forgive me!!

Have you taken stock recently?

Denyse.

Link Up #196.

Life This Week. Link Up #196.

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

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

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

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

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

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*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.

* THANK you for linking up today! Next week’s optional prompt.28/51 Self-Care Stories. #4. 13.7.2020.

You are invited to the Inlinkz link party!

Click here to enter

My adapted list of prompts for Taking Stock.

Making:
Cooking:
Drinking:
Reading:
Wanting:
Looking:
Playing:
Wasting:
Wishing:
Enjoying:
Waiting:
Liking:
Wondering:
Loving:
Hoping:

Marvelling:
Needing:
Smelling:
Wearing:
Following:
Noticing:
Knowing:
Thinking:
Feeling:
Bookmarking:
Opening:
Smiling:

Original Taking Stock List is here, from Pip Lincoln.

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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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