Thursday 30th June 2022

How This Trip To The Dentist Changed Me. 43/2021.

How This Trip To The Dentist Changed Me. 43/2021.

ABOUT Head and Neck Cancer Australia First! 

Before I proceed, I ended up, after a long time. finding out I had cancer in my gums and under one lip. No dentist nor G.P. had even thought of this as being the case. This was not, in many ways, a fault or failing of them and their knowledge and skill set.

I have a “rare of rare” cancer as my Professor told me. I am now an Ambassador for Head and Neck Cancer Australia and continue to share the ways in which this rare cancer can manifest itself. This link, to Head and Neck Cancer Australia, formerly Beyond Five, will take you to the page about diagnosis. This is a highly reputable and facts-based and checked website. Its content undergoes regular and thorough reviews by professionals in the field.

One of whom is Professor Jonathan Clark AM – my head and neck surgeon who is also Chair & Founder of Head and Neck Cancer Australia.

Visual inspection by Jonathan  as Surgical Assistant and HNC Nurse Cate records my visit.

Back to my post.

Going to the dentist had been a regular thing for me from the age of 3.

I am now 71.

Going every 6 months as suggested.

Going in between when issues arising in my mouth needed fixing.

In some of my blog posts about head and neck cancer, I have outlined the role played by my now (and he was then) dentist in the discovery of oral cancer in my gums.

Before My Upper Prosthesis Went In: July 2018. My Dentist and My Dental Nurse.

I also wrote with detail last week for Part 2 of 2 about the time 2016 to 16 May 2017.

Allow me, here though, to outline exactly how that one trip, on 6 April 2017 changed me FOR the BETTER.

When I was learning about how to deal with areas of my life where I felt fearful…travelling and getting to see people were distinctly challenging because my Irritable Bowel Syndrome (I.B.S) was so unpredictable I just stayed anchored to home. Safe. My then Psychologist who knew I really wanted to overcome this suggested I learn about Exposure Therapy and over time, she taught me that it could be done in stages.

Yet: I still couldn’t see HOW I could do the hard things like drive to the dentist, and see other professionals when I needed to…etc.

Until I literally HAD to!

Message to me before my first surgery

Backstory.

Reading through my blog posts, as some of you have, you will note that my anxiety about I.B.S. and being anxious about travel in particular escalated. This was NOT me being the me I knew and wanted to be …..until I had enough.

Enough of trying to find out what the heck was going on in my very sore mouth

Enough of thinking I was the cause of all the issues because that was how sometimes I was made to feel

Enough of waiting for things to get better

ENOUGH….but first, this is what had to happen.

  • A scaffolding of how I might get to the dentist to have the all the teeth that were part of my bridge removed
  • A new G.P. who offered me a drug (endep) to help slow my gut and prevent some I.B.S. issues
  • A determination within me to get this done…

No Matter What! Self-care helped!

 

On Wed 5 April 2017 I was nervous about the upcoming dentist trip I did go out & do things but the “enormity” of what was ahead overwhelmed me

  • I broke down & just couldn’t see how I could deal with it
  • B was good at listening but I knew that despite the dread & worry & fear IF I didn’t go through with it it would be :
  1. Avoiding
  2. Would make it worse
  3. I’d not get my mouth fixed

So I took steps to make sure I got there:

  1. 1/4 Valium in arvo & then at night helped reduce the internal rumblings
  2. I told myself it was a positive to be getting it done as it’s troubled me for so long I couldn’t let it go on & on
  3. I needed to tell myself the outcome & process had to happen. I stopped thinking there was doubt or other I needed to own this
  4. I ate small because I was scared of IBS but that’s not
  5. I knew I could take imodium if there was a reason
  6. I used the hypnosis from audible in a big way
  7. I had B taking me & he agreed to do it anything to make it work

Straight after the removal of the bridge, I had this denture put in. It was a very painful time and over time, did not improve…

 

How Did It All Work Out?

I did it.

Together with my dear husband, and the team above in the first photo.

I recovered slowly as it was quite a shock to my system, physically and emotionally

I learned that my determination was a quality I had and could call on again (again and again as it panned out!)

I knew too, that I OWNED my actions and thoughts and that I could, over time, even with fears and reservations deal with anything else that was to come.

And I have and do.

On 6 April 2021 I posted this…with pride and gratitude for all I could do…and need to do now when faced with challenges. 

Always Grateful For My Courage.

And, some three and a half years later, getting a check up of how my upper prosthesis was going (great) as in covid times I couldn’t see my prosthodontist and my dentist also looks after my 8 actual and remaining teeth with a regular check and clean every six months. And I am no longer scared about going to the dentist and thanks to my rectopexy surgery and meds, I have not had (touch wood) I.B.S. for over 6 months.

 

How do you feel about going to the dentist?

I admit, that before I had the bridge extracted my dentist already know how anxious I was about all that was going on in my mouth and between him and his lovely nurse I was very well cared for. Now, he and I have a lot of laughs more than anything and he is as grateful as I am that my cancer was found and has been treated as well and my care for my upper prosthesis is excellent.

Do go to the dentist…and do tell him/her if you are worried or anxious. It is always better to do rather than avoid.

And please, check the symptom list at the beginning of the story….and come back to it anytime.

Denyse.

Linking up here with Leanne for Lovin Life Linky

Joining with Natalie here for Weekend Coffee Share.

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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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My Latest Head & Neck Cancer News.120/2019.

My Latest Head & Neck Cancer News.120/2019.

For those who are new to the blog and my head and neck cancer story, all posts can be found here. 

As I reach the end of the year, it’s timely to do an update of how it is to be living with the results of head and neck cancer.

Specifically for me, the cancer was found inside my mouth: top gums and under the top lip.

It was named squamous cell carcinoma at first diagnosis after the initial biopsy but after my first surgery here, the results from the massive pathology testing done then according to my head and neck cancer surgeon was a form of verrucous squamous cell carcinoma. I do not pretend to understand my version of head and neck cancer. It IS oral cancer but for ease of others finding my blog I file it under head and neck cancer.

I am told by my professor that my version of this cancer is rare. The fact that head and neck cancer like mine (no Human Papilloma Virus/HPV cause) and no risk factors like smoking or drinking alcohol makes me “rare of rare”. Professor Jonathan Clark AM 2019. Sigh. Ok, I am glad it’s rare I guess but there is a puzzlement always about the how and why of my version of this cancer that I discuss with my dentist (who ordered to original biopsy after I had him take the bridge and teeth out…so I have learned to accept the no reason as best as I can.

Always grateful for my head & neck cancer surgeon

Supporting Others Helps Me Too.

My Blog.

This place (right here!) provided me, initially, with a way to tell my head and neck cancer story. I am glad I still keep going with the updates. Now as I hear, it can also be a place that others who are newly diagnosed, family members, friends and professionals can pop in, using the top of the page link to see all posts.

My Social Media Presence.

Twitter.

I like to talk (!) and connect so when I want to do this, without face to face catch ups (we are all over the world!) then it’s to social media I go. I have an active twitter account https://twitter.com/DenyseWhelan1 where I follow head and neck cancer patients, carers and professionals. Some of those include Beyond Five where I am an Ambassador, my fellow Ambassadors Julie McCrossin and Marty Doyle. The New Zealand based Facebook group, found here, has two of its admins Maureen Jensen and Tammy Von Keisenberg who are on twitter.

Facebook.

My blog’s facebook page https://www.facebook.com/denysewhelanblogs/ is where I do my main connecting these days and also use this profile in the Head and Neck Cancer Support Aotearoa. If you have head and neck cancer, or a family member or friend does, this group with over 500 members is an active and supportive place to share, read and find information. Meeting up with Fergus was a delight and getting to know Tara too. These people are the first who have also been diagnosed with a head and neck cancer in similar place to mine and we all have Chris O’Brien Lifehouse as our cancer centre.

Groups.

The local Head and Neck Cancer group for me (Central Coast NSW)  has a social media presence with a public facebook page found here: 

Beyond Five: found here, also lists meeting days and updates from groups around Australia. This is the link to the general page.

Most months I attend the Central Coast group meetings and next year will continue the practice. The group is open to all, and each 3rd Thursday of the month from 10 – noon we can be found at Erina’s Cancer Council rooms, within Erina Fair. Gary Mar is the group’s facilitator.

Beyond Five Ambassador.

I am delighted to announce I am continuing in this role for 2020. I have really enjoyed learning how to be the Ambassador that works for me and for Beyond Five and this is going well. It was in this role that I supported Soup for the Soul Fundraiser back in July for World Head and Neck Cancer with  my own (on-line!) and the event held at Cancer Centre Gosford Hospital in July. The group is grateful for the Head and Neck Cancer Patient Co-ordinator Nurse Lisa Shailer for her insights and lead and to Twynette Dickinson from the Cancer Council for her interest and presence.

Eating

I planned my eating in advance of going to the Christmas Lunch. It’s the best way for me.

  • I have found eating some foods fine. These include breakfast cereals with milk, some cracker biscuits with cheese, a small cake, grapes, mango and some meals which include mashed potato, meat (like cutlet or steak) and some tomatoes which can add some liquid to the food. It is a challenge for me to eat outside the home so I have accepted that unless it is say at my daughter’s house, I will be fine with a cup of coffee, a cake or something to dip into the coffee.

At Head & Neck Cancer Support Group Christmas Lunch this was my manageable and enjoyable choice to eat while socialing.

 

  • The foods that can be ordered out take me far too long to eat and my mouth gets sore inside. Whilst I have upper teeth they are tight inside my mouth and up against the gums and the biting and chewing that is enough for safe swallowing takes time. I get tired. The food gets cold. I tried to eat a meal out once and was refused a bag to take the rest home so another reason for no eating out is it is very expensive to waste money on food I cannot eat in two stages.

 

  • My main meals at home are like a bread & butter plate size. Or I use a regular plate and eat half one meal, cover it, and refrigerate it and eat the rest the next day. Because I have found this is a good strategy it means at least once a week I am eating some red meat (iron) that I love and some accompaniments and also sharing this meal with my husband. Most meals though, are ones I have made in bulk and are in small containers for me to eat after defrosting.

  • Occasionally I will try a salad as caesar salad is a favourite but again, I take so long and my mouth gets sore, so I make it in two halves. I cannot eat corn on the cob, tomatoes were lovely but they are affecting my mouth by stinging now (skin is very sensitive) and an apple…well, how long do you have? I cannot bite into it and the skin is too challenging, so if I give an apple a go, I may just grate it.

 

  • I have never been a spicy food person and would be hard pressed to have anything like that now or anything too hot. Cold is better in my mouth than hot.

 

  • Inside my mouth the skin is of different ages – some was added in 2017 and the remainder in 2018. My right thigh is the donor for my delicate areas between the gums and inside of lips. I have, as you would know, the flesh and skin from my right leg as my palate.

The wounds are where the bone (fibula) and skin/flesh were taken in July 2017

  • What is interesting is that because the top of my mouth is made from my leg (skin, flesh and bone) it acts like a legI am fortunate that the palate no longer grows hair.

 

  • However, I cannot taste nor feel any food in the top half of my mouth. IF I really want to savour a texture or taste, I need to put the food upside down in my mouth!

Appearance

Unless there is a reason to do so, I no longer mention to anyone new that I have had cancer. The reasons I did in my first years was about the way I looked. I certainly DID look different with no top teeth (upper prosthesis) and a mouth that was healing along with my leg. It was, for someone like me, a talking point or conversation started in 2017 and until I got my upper prosthesis in August 2018.

After that for a few months those I had met before were amazed to see me with teeth and smiling..even my head and neck surgeon (above) who remarked “Denyse you look fantastic…great work Suhas” when I’d sent him the email photo of me after Suhas (the prosthodontist) had fitted my upper prosthesis.

My top lip on the right hand side is pulled in (still) despite the months I spent with a stent trying to push it out. At least the stent did the work for me to have the upper prosthesis fitted. My top lip and under my nose is completely numb. It is very dry too and can itch. I have bought tube after tube of lip creams/balms/ointments to be told that there are some nerves in there that no longer work and so I just need to keep things in better condition for me to feel more comfortable instead of this constant tightness. The top lip appearance changes completely when I smile. So, I smile as much as I can!!

Nothing is as it seems. Sometimes.

I would be less than honest if I did not make a comment about this. I have found as time passes, that with little visible differences now in me, there is no real interest in my head and neck cancer. This is in my family and friend relationships too. I have pondered this and I believe once the novelty (strange word to select) has worn off this cancer diagnosis of mine  – it was very unusual – then people move on. In some ways I have but I also can never forget I have had cancer.

Each time my mouth moves one way or another, I feel the difference. No-one can see it of course, but I know it. When I can not stretch out my right leg or even my right foot then I am reminded of the sacrifice one part of my body made for another.

In the lead up to my third year of living with the diagnosis of a head and neck cancer (May 2020) I do take time to count my blessings and express gratitude (of course) but there is something quite profound about having a part of your body placed in another part of your body so you can function and live as well as possible.

Celebrating my 70th Birthday: with my husband who has been by my side throughout almost 49 years of marriage, but even more in the years since I was diagnosed with HNC.

I do get on with my life (as a now 70 year old!!) of course but have to say, despite the head and neck cancer existence for me, that I am noticing I can be more distracted and interested in hobbies such as my art and designs, getting out to meet people, going to the shops..ahem..for coffee of course. NOT always clothes shopping as my husband seems to think.

Am I grateful?

Yes I am.

However, I will continue to be monitored and tested for a return of cancer until at least 5 years has elapsed from diagnosis. So, I will be looking at May 2022.

Appointments scheduled.

Ask any cancer patient and they will likely say that once the more frequent appointments spread out (for the good news reasons like mine) there is an initial feeling of what now? I did have that this year once I got to May and was told my future appointments would be 4 monthly. So I am back to the Prof early March 2020 at Chris O’Brien Lifehouse. My prosthodontist who saw me for my…40th appointment late November does not need me to return till mid March at Westmead. I am never quite sure of what the next appointments will entail. I trust I will continue with my path of wellness for which I am very grateful.

Head and Neck Cancer Patient Forum. 2020

On Friday June 12 in 2020 at the Garvan Institute I will be a patient who is interviewed about my experiences with head and neck cancer. It is open to patients , carers, family and more. The details are here. Costs are free to attend for some and a small fee for others. The link is here and I will be updating no doubt in 2020.

About my word of year 2019: Integrate.

When I chose this word at the end of 2018 it was after a conversation with my husband where he pointed out that maybe my cancer could be less important in my daily life. Mmm. Easy to say from a non-cancer person but much harder to do for me. Then. However, when I had the word engraved on the bracelet I have worn daily since 1 January 2019, on the back it says “HNC & Me” meaning that over time I hoped to grow to the point of head and neck cancer being a part of me but not the main part. I can now announce, I have noticed this for myself in the past few months so like all things, it happened in its own time.

Thank You.

The blog is my place for recording what I can share with the wider world about what it is like to have head and neck cancer. I now know some newly diagnosed patients and families have been assisted by reading the blog posts which I keep in a special page on my home page – right hand side. When I give someone my business card, the website is there and my information as an Ambassador for Beyond Five; head and neck cancer awareness on-line.

Top: L: Beyond Five Ambassador R: My Prosthodontist & Nurse: Westmead Bottom: L: Professor Jonathan Clark AM R: Sr Cate Froggatt

 

Earlier this year, I was published here too if you are interested. Life, Death Whatever take submissions from around the globe and a book will be coming in 2020

Thank you to my readers. This was a long-ish update!

Denyse.

Joining each Wednesday with Sue and Leanne here for Mid Life Share the Love Linky.

On Thursdays I link here for Lovin Life with Leanne and friends and on Fridays, it’s Open Slather here with Alicia.

Copyright © 2019 denysewhelan.com.au – All rights reserved.

 

 

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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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