Saturday 23rd March 2019

Two Years Ago: Before My Cancer Was Diagnosed. Pt 1. 20/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 1. 20/2019.

In this series of posts relating to my head and neck cancer, specifically (quoting from pathology reports after my 6 July 2017 surgery):

hybrid squamous cell carcinoma (in my upper gums and under my top lip) showing features of both verrucous squamous cell carcinoma and conventional squamous cell carcinoma

I am writing about the times of leading up to the day I was told cancer was in my mouth. I think I thought I had cancer of some kind for a year or more earlier. But, to the medical and dental profession’s credit, my cancer is both rare (head and neck cancer is around 3% of the population) and even rarer in someone like me with no risk factors.

There is another BIG reason I am writing this. I need to feel I can say now what I could not before ….because I did not know what was wrong! I thought it was my emotional health letting me down. Again. I did so much to help myself. Therapy, medication, being outside, doing volunteer work, having some hobbies, and more. NOTHING gave me an answer for what was changing in me and I was a nervous nelly anyway …but deep down, cancer was on my mind.

Below are photos of just some of the examples I did to help me emotionally. Mind you, they have indeed helped me still now that I know it was cancer but back then, I was following instructions!

To blog about this is helpful for me

I am re-living a time of memories of the ‘unknown’ and also one in which I was doing all I could in an incredibly challenging time in my life: selling up in Sydney, moving to the Central coast , getting sad about leaving our family and finishing my worklife after decades in education. Two years on, I KNOW the sometimes good that has come from my cancer diagnosis and I acknowledge that . It has also been, and continues to be as hard path to walk but I am doing the best I can.

If my post are helpful to others, then I am also glad to write them.

From my memory and using my word journal.

In preparation for my teeth to be deep cleaned by AB after consensus from the specialist gum dentist was same as 3 other dentists (2014-2017) & a biopsy on a white patch under top lip near gum: candida.
Fungalin did not help. Mouth rinses with nilstat did not help. Already gums were over growing top teeth (bridge at front) & behind on soft palate was constantly red & irritated for at least a year.
Instuctions to “clean better” … under an impossible to reach back of a bridge just served to make ME feel at fault for my sore mouth!

2nd March 2017

My dentist is AB, and I had been seeing me for around a year & knew my dental history. I was a fearful person but always had 6 month check ups & had gone through extractions, fillings & root canals. After I did not pursue allergy-test for nickel (component in the bridge) as AB researched the composition of 2011 installed bridge done in Sydney by HS, I was coming back to him for a ‘deep clean’ on 2nd March 2017.

“I took immodium as I was wary of IBS coming on my 30 minute drive from home to his surgery. I was so stressed about that & whether I could make it but I was also determined to see that I did.

Having done some practice “exposure” therapy in small bits, I knew I had to have this “deep clean” of my upper teeth & bridge as the pain, gum growth & irritation had been there too long.

For most of my adult life I had felt “the teeth troubles I had were my fault” as I had a sweet tooth. There was a part of me that felt guilty about my mouth!

So, I set off on the road the most physically anxious I’ve been but in control of the drive in my car. I had one loo stop then arrived at the dentist. I was so stressed that when I finally saw AB & his dental nurse I broke down. Through my tears I said how worried I’d been & how judged I’d always felt about teeth & I was grateful they were helping me.

They were very kind & reassuring & I popped in my ear buds & was ready to listen to my favourite story teller, William McInnes. His voice is like a balm for me especially when telling the tales from his life as a kid.

It took so many needles to numb the area at the top where I’d had gum over growth & soreness for almost a year now . AB was to deep clean & get right into the top area where my bridge sat containing my front teeth.

As I didn’t quite know what to expect & what the outcome would be I was naturally tense. However to my credit I stayed & got it done only asking how much longer (10 mins) & telling him when it still hurt (more needles required)

William McInnes voice helped distract me from the noises of water, sucker & instruments as I visualised as much of that as I could. From time to time I had to rinse out & the blood & water that were going down the drain shocked me.
I felt quite shaky when it was done & it took more than 90 minutes I believe.

The ‘good’ news is AB believes all irritation is due to left over cement from when it was put in & debris accumulated in spaces under the bridge.
I have candida & need funglin for a while. I could come back in 3 weeks for check up if I like & he hopes all will improve over time.

They were so lovely & kind even in their front office. I was touched.
It was a trauma in a way because I had to beat 2 things/ worry re IBS & treatment & outcome.

So… I did well considering how much it took out of me to get there!

Boy that was a huge exposure therapy success.

Quiet arvo at home getting over it all
then wanted to see the sky over beach as wet weather is coming.

Spent an hour taking it in & pics too
Soup for dinner & mouth actually feels bit better already Have a special floss to use.”

Making the best effort to ‘be’ what I did not feel. Two months before I knew I had cancer. March 2017.

Stand by for what happened next.

Denyse.

Joining with Alicia who is hosting Open Slather on Fridays now! Yay for being back…and a different day. Here is the link.

 

 

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Comments

  1. Hi Denyse

    You’ve been on quite a journey. I’m sure there’s lots of people out there that this is helping, even if you may never hear from them. We’re you blogging before you found out you had cancer?

    Keep going with this series. It’s definitely going to help others.

    Hope you have a great day.

    Kind regards,
    Chris.

    • Hi Chris,
      Great to hear from you! I was blogging for about 7 years before cancer made its way into my life. As a retired teacher I guess it’s in me to want to help and educate if possible.

      However, in saying that, I also knew it would be good for me to do this and then to be able to look back (and hopefully!) see how far I have come. There have been many little (and big) challenges in my recovery. One big one was that a surgery of mine in Feb’18 did not ‘do the job it was hoped inside my mouth, so it was back again in May ’18 for a bigger and better version!
      Now that I have become an ambassador for Beyond Five, I hope to reach more people in the wider community re Head and Neck cancer awareness. But…it is not a well-known one nor common. Although as you may agree, those of us ‘with it’ could add….nor wanted!

      Chris, I am buoyed by your presence via the blog you write and connections through the HNC group in NZ that we both belong to. Thank you for blogging too.

      Keeping you in my thoughts, and your wife, Denise, too as this ‘waiting’ for the next big op continues for you. Healing is what is needed I know…so come on anti-b’s do your thing.

      Denyse

  2. I get all goosebumpy when I read your posts Denyse, you seem to have an affect on me that’s for sure. I hope the telling helps not only you but all the others out there who are in a similar predicament. It must seem strange going back and reading your thoughts before you actually ‘knew’ what was wrong. Take care!

    • Oh gosh, I don’t want you to get scary goosebumps. I admit evern re-reading this made me wonder ‘how on earth did this go on for so long’ BUT as I was told by my Head and Neck Surgeon Professor last week, Head & Neck cancer is rare (3% of Aust pop) and you are even more rare with no risk factors.

      However, it does not hurt for me to at least let people know that cancer can appear on the skin in your mouth as I DID NOT KNOW….and that when you visit your dentist, you ask for a mouth check. That is a look at insides of cheeks, upper palate, under tongue and the sides. My dentist did it for me when I returned to have my remaining 8 cleaned last year.

      Thanks Debbie,
      Denyse x

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