Sunday 18th August 2019

Two Years Ago: Before My Cancer Was Diagnosed. Pt 3. 35/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 3. 35/2019.

Thanks to readers who have commented on these posts.

They are, in some ways, very personal and maybe a bit indulgent but they are going a long way for me to feel better and recovering well from my version of head and neck cancer, found in my upper gums and under one lip.

The first two posts about the two years ago can be found here and here.

My last words on the previous post were these:

“take the teeth and bridge out, I HAVE to know what is underneath!”. I was a bit better-mannered than that with my request to my dentist but inside I felt these words more!

Why Did I Want The Teeth Taken Out?

For well over 6 months from late 2016 into 2017  this dentist and I worked on “what could be going on with my gums”.

This is why.

  • My upper gums were sore and red. They felt that way in part of my upper palate (roof of my mouth).
  • There was a ‘feeling’ of skin tearing up behind the covered part of the gums as I had a bridge permanently in my mouth.
  • The bridge (and a crown) had been added to the 6 front teeth spaces to add to my appearance and function as the original teeth had been heavily filled and already had been treated to the maximum by the dentist in Castle Hill in 2010-2011.
  • I went along with this procedure without question as I was promised it would be better. It was paid for by Medicare for people like me with chronic dental issues back then.
  • I admit I was ignorant of the what and how of the procedure but it seemed to be right. I trusted the dentist.
  • What did happen over and over from then until April 2017 is each new and subsequent dentist (3 in total)  told me “You are not cleaning behind the bridge properly”.
  • I did what I could. It was a very awkward and uneven space and even the dentists were challenged with their instruments.
  • “You have candida” I was often told. Yes, OK. I took so many fungalin tablets and added nilstat as a mouthwash only to find no change, and diarrheoa as a side affect. NOT something I welcomed with IBS already the ‘beast within’.

The mouth still hurt.

I had thorough cleaning at the dentist as late as March 2017.

The mouth still hurt.

I watched the gums slowly creep over the top of the front teeth.

The mouth hurt more.

But still this dentist wanted to investigate more even though he said theoretically he could take the teeth and bridge out.

I went through trying to get myself tested for nickel sensitivity – nickel is part of the bridge. I chose not to. I wanted action.

I could not eat much at all – combination of the very sore mouth and anxiety about it and good ole IBS.

So, the deal was struck. My teeth and the bridge they were on were coming out of my mouth on 6 April.

But wait….

I am too scared to both travel AND to do this! Right?

From my journal the day before:

On Wed 5 April 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 :

Avoiding

  • Would make it worse
  • 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 choices. I needed to own this

4. I ate small because I was scared of IBS but that’s not new.

5. I knew I could take immodium 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.

The day came. It was just after lunch. Not that I ate any! Yes, my dear husband did drive me and yes, I took medication as advised. I was warmly greeted by the team who really understood this was hard for me. I had my iphone and  earbuds and a hypnosis session ready. It started with LOTS of needles and reassurance all the way. I could give a signal to stop (I did only need that to tell them it was still hurting too much). I could also ask for a break to go to the loo. I did that once. By the time I decided I had enough…it was done. I was surprised. My husband had sat in the room reading as I was treated and it was nice to know he was there.

I knew there would be a denture put in – and whilst that did not hurt then  it did later. I had the model made the week before. So, then I was shown the teeth and bridge. I took a photo but not the teeth with me. The dentist’s opinion at the time was that everything looked OK gum and bone wise and I would see him the following week. I just needed to get back in the car and home. It was done! Over.

Afterwards I recorded this:

 Mouth sore & swollen

 Ice packs on my mouth

Taking medication – neurofen & anti-biotic

 Still got some bleeding (6 hours later)

Headache & tired

 Ate squashed pear, yoghurt & grated cheese & PButter

Very proud of myself and was told by B I was great.

Now if only IBS would bugger off!

Back to dentist next week to check it out & adjust the partial denture.

It

Is

Over.

Then I had about a week of pretty intense pain manipulating the partial denture in and out of the top gums. The gums were sore. I just expected that I guess. The following week, I re-visited the dentist alone with more self-confidence albeit in pain, where he adjusted the denture, told me what to look out for and I would see him in around 4-5 weeks.

And so, within that period of waiting, things did not progress as well as either of us hoped.

There will be a fourth part to this lead up to the Two Years Since My Cancer Diagnosis.

I hope that sharing my story is somewhat helpful to you. However, I must add, as my Head and Neck Surgeon told me:

“Denyse your cancer is rare and you getting it with no risk factors (smoking, drinking) is even rarer”

With Prof Clark – My Head and Neck Surgeon at Chris O’Brien Lifehouse.

Thanks for being part of the journey in these posts I am writing…for good reason and for information shared as I so often need to do since my Head and Neck cancer diagnosis.

Denyse.

Joining with Sue and Leanne here for Wednesday’s Midlife Share The Love linky,

With Leanne on Thursday for Lovin Life link up here AND with Alicia on Fridays for Open Slather here.

Thank you all for your link ups.

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Comments

  1. A dramatic story Denyse. You must have been in heavy pain.

    • Thank you Maureen for reading and commenting! I normally don’t post on a weekend and this was ready for next week but I thought why not! It is the 2nd anniversary and it meant a lot to me to overcome what I did to get to this day in 2017. It helped set me for what was to come even though I knew nothing then. But in managing this event, I was able to recall how I did for more that was to come.

      Yes, I was in pain. A lot in my gums before the extractions and on the roof of my mouth. I literally did everything suggested to no avail. So, it was my choice to have this all out and boy I really did need to know. I would have had it done earlier but it was, as you might expect, the conservatism of the dentist to explore other things first.

      Now I know how “rare” HNC is and even rarer is mine, then, I can accept why it took till April for the inevitable (my words) extractions.

      Denyse x

  2. It’s an interesting (I’m not sure if that word is the right level of sensitivity!) situation because you can appreciate conservative approaches when you have a standard case, but when you fall outside that, the rules do get a bit meaningless. I’m not sure if there’s ever a correct answer but it does highlight the need for treating clinicians to be both skilled & interested in their field to balance likelihood & outcomes.

    • Your words are fine! For quite some tine post-Cancer diagnosis I really wanted to re-trace some of those steps & change things but of course we cant! Interestingly knowing my version of this cancer is doubly rare for me (my lovelt Prof’s words) helped me “get over” any of those what ifs etc. I did feel vindicated though when my dentist said to my husband recently “Denyse thought she had cancer didn’t she?” They both agreed that their responses to me when I raised it a few times were being both protective & like you say, out of the range of the norms. I have no anger nor regret now as I have had a very good outcome compared to many with head & neck cancers. Denyse x

  3. Dorothy Allison says:

    Denyse, I really appreciate your courage even though you may have wanted to avoid what you knew would be painful. Thank you – Dorothy

    • Thanks Dorothy. The skills of doing what I’d rather not I literally had to put in place to move forward in my life at tgat time. Grateful that I had a husband who is a trained counsellor with huge life lessons of his own, who could remind me that doing the hard thing – as I have now termed it – was/is the only way to get through. Then once I’d achieved this huge step, it did in so many ways give me the lived experience I could draw on in the weeks ahead before the cancer diagnosis. More in this series to come.. it is most helpful for me to write it out too! Comments make is GOLD! Denyse x

  4. I have always maintained that there is little worse than the pain of a toothache or earache. I cannot imagine how difficult this period of your life must have been. Not knowing what was going on, dealing with pain, your worst fears, and then the IBS – the cherry on top. I need to go back and read the first segments of this chapter in your life. Praying that with the 4th installment we learn than your issues were remedied.

    • Thank you so much Leslie, yes you are right about that. I did have a lot of toothache over the decades but this story told here, remained quite the mystery until I had a cancer diagnosis. I have told the story of finding out about that in the series at the top of the blog called Denyse – Head and Neck Cancer. However, these “2 years ago” ones are helping ME piece together what was a long, worrying and very stressful time.

      There will be two more posts. Like I said, they do bring the time up to the diagnosis but as I write to share and educate, I thought it was a good thing to write the story of “before”.

      Your kind words are appreciated very much.

      Denyse x

  5. There’s so much involved isn’t there Denyse? And you did well to document so much of it. I guess a lot of people go through all this sort of stuff but are so caught up in the moment/pain/worry that they have no clear notes or memories afterwards to refer back to. You are certainly an excellent record keeper!
    Thanks for linking up with us at MLSTL and I’ve shared on my SM 🙂

    • There sure has been and is! I do think that keeping my story alive (so to speak!) helps me process what a HUGE event getting cancer has been. It also does soften the blows of what I went through because I can gauge my progress this way.

      It is having an effect on me, this remembering two years ago, but I am seeing it for the positive outcome it had for me than any other way.

      Yes, record keeping and me, I am always glad I am a ‘memory maker’.

      Thanks Leanne, for your kind words and support.
      Denyse x

  6. Oh Denyse, it makes me so squeamish just going to the dentist for normal checkups, I really admire you telling your story like this, although I can imagine it helps you deal with things too in some way. #mlstl

    • Sorry Debbie…

      I may be need a warning at the top….but let me add, I was always a nervous dental patient and it got worse as I aged.

      I was always afraid of what might be found…more about self-judgment than anything else and I sure did have some ‘judgy judgy’ dentists.

      Nevertheless, as they say, I persisted….and look what happened. It was cancer, a very rare one I add, but it was found and I credit me for “making my dentist” listen and do the extractions.

      Denyse x

  7. My goodness, Denyse. The things you have been through and you are still left smiling. I admire your strength and appreciate you sharing your story with us. Hang in there girly! You got this! #MLSTL

    • Thank YOU so much!

      This experience sure has taught me about my inner strength because I had to call on it very much.

      Your supportive comment is much welcomed!

      Denyse x

  8. Gosh you have been through a lot, Denyse but you have come through so much stronger as a person. I can’t imagine the pain and discomfort you have been through but hopefully now life is on the UP! Thank you for sharing your story and linking with #MLSTL. It will help others who are going through the same experience or other tough times to know that you can get through it. Have a great day! x

    • Thank you Sue, I do not share to ‘glorify’ what I have been through because it has been ‘hard yards’ for sure. I have always appreciated your support through this story I am living.

      However, it helps me to share and I am so glad to have the welcoming space of the blogging world to do so.

      Denyse x

  9. I can’t even imagine the pain, Denyse. What you’re doing through this journal is helping others if they need to go through this. Being such a rare cancer you experience is even more valuable.

    • Thanks so much Joanne. In some ways the pain was emotional as well as physical but it is quite amazing what we humans can endure.

      I do share via the blog as it’s helping me understand what I have managed to come through and for others to be informed.

      Denyse x

  10. You’ve been through so much scary stuff Denyse. I cannot imagine how I would cope in the same circumstances. I think it is fabulous that you’re sharing your story because not only is it helpful to you to process what you’ve been through but I am sure that it will prove helpful to someone else out there too. It also is a good wake up call to all of us to never take good health for granted! xo #TeamLovinLife

    • Thank you Min. Interestingly I used to read cancer stories (not head and neck as I had no idea of that cancer till my diagnosis) from others and think I could not cope. But somehow we do when we have to.

      I have always been fortunate to have my very wise and caring husband with me from the day of diagnosis and he leads me forward should I begin to slip back into sadness or regret. Our partnership of 48 years helps greatly.

      Denyse x

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