Tuesday 21st August 2018

Oral Health & More From This Head & Neck Cancer Patient. 2018.71.

Oral Health & More From This Head & Neck Cancer Patient. 2018.71.

I know!

Another post about Head and Neck Cancer!

But there is a very good reason why!

Not many people, including our “every day” health professionals are all that familiar with the signs of a possible Head and Neck Cancer. This is why, over the past month, there have been posts, tweets, instagram and facebook status from various people, including me.

This list of symptoms is from Cancer Council. Head and Neck cancer does not cover brain cancer.

On 27th July 2018 it was World Head and Neck Cancer Day. The 4th one ever. The first one held in 2015 after it was announced by former President Bill Clinton in 2014 and H&N cancer patient, actor Michael Douglas seen and heard here:

Do you know I disliked (hate is too strong a word) going to the Dentist?

I started when I was under 5. Apparently my teeth ‘came up decayed’ after an early childhood illness of mine and so a trek to a very painful experience at the dentist in Wollongong as a kid became part of my life. Urgh.

I had to have fillings and extractions (my 6 year old molars came up and were taken out!) without any anaesthetic. Thanks Mum and Dad (not) for never letting me know you could have a needle to dull the pain. Dad recently corrected me on this ‘fact’ saying he did not know either. The dentist, Mr Stone, worked in a surgery up some stairs in a  building in Crown Street Wollongong. Recently, at Westmead Oral Restorative  Sciences I saw ‘the set up from my childhood’.

My dental history, once we moved to Sydney (and I found out about injection for numbing the fillings!)  continued from 1962 until 2017:  with the usual fillings, removal of teeth in my latter years, root canal therapy and finally a bridge with a crown in 2011 was placed over my front teeth. I also had a partial denture in the upper gums and one on the lower gums.

Sometimes, in the past 5 years,  a “new to me” dentist would proclaim that I was not cleaning well-enough behind the bridge and candida was forming. I followed instructions, I bought products to help, I swallowed more fungalin than anyone needs to…and I had a biopsy on a white spot at the top of my mouth between upper gum and lip. Nothing but more candida was the response. Oh. the stuff I used….and still nothing really got better until late 2016 into 2017..read here for the details.

The people who are so kind and helpful to me at my local here, and oh so relevant Dental Surgery are the ones who understood my anxiety re travel to their surgeries, “got it” when I had to cancel at the last moment (IBS) and were just the best when it came to me having my HUGE challenge of all the top teeth & bridge removed in April 2017 BUT were “there” for me from the receptionist to the dental nurse to the dentist. It has been on of my life’s real blessings to find them. Here I am in June when I had a check-up.

Moving On…in more ways than one!

To have my cancer removed from my gums, allowing for margins, I had the ultimate extractions on 6 July 2017…my whole upper mouth! But, of course, the wonderful professional team I have, knew just how to replace what had gone. Use my leg! Good old right hand side leg had better blood supply so, it would be the agreeable donor of a fibula, some flesh and skin. OH alright then!

In recovery time: both in hospital and at home, learning to walk somewhat well with a boot protecting a very big and fleshy wound was hard. I had some physio & head & neck cancer nurse advice from Chris O’Brien Lifehouse before coming home. I had/have a very good GP and of course my husband on 24 hour call who knew I could walk and wanted me to be as independent as I could. Photos are of late July – 2+ weeks since surgery.

I also had (and still do) a very helpful and caring professional …my podiatrist Sean. He came to the house to give my nails some care and to check out what had happened. He keeps on eye on my gait as my walk is OK but sometimes I can feel like I might fall when I pivot. Memo to me: think before pivotting! Here’s where he works. 

One year on…thank you to Sean ( a new Dad now!)

How Do YOU Thank Someone Who Told You “You have cancer?”

In person, with cake. Yes, that IS my modus operandi. I come with little home-made cakes and a home-made card of appreciation. The moment I heard I had cancer held my attention  for a long while and will never leave me. However, even on the phone, from Wagga in NSW south west region, my Oral Surgeon, who had done my second biopsy in 12 May 2017, told me with care, compassion and a practical message!

She told me that she would be referring me to a Dr Clark in Sydney. I had no idea who or where but I took down the details then rang her surgery at Ourimbah  where I had my biopsy. Stef Calladine works in various places in N.S.W. and I am impressed by her work and her patient relationship. When I called the surgery, the lovely ladies there knew and helped me as much as they could, with a name (Dr Jonathan Clark), the place (Chris O’Brien Lifehouse in Sydney) and a phone number. More of the story itself is in the post above.

It was a couple of weeks ago I finally locked in a day when Stef was in and I could go to Ourimbah and what a delightful reunion it was. She has been following my progress professionally with follow-up letters and reports after surgery. I also got to ask the mystery (to me) question. How did Stef, someone who had trained and worked in the UK till a few years back, know to send me to Professor Jonathan Clark at Chris O’Brien Lifehouse? She didn’t but her nurse, Cathy, did! Oh thank YOU Cathy! That was the best decision.

About THE Teeth…when??

It is not a $64 thousand dollar question but I do want an answer of course. From the work done by my amazing and caring prosthodontist and the prosthesis makers at Westmead here I am getting the idea I “may” have something like a set of top dentures added to the upper gum by the end of August. I have to add I am a bit nervous. Gosh, people, I have not had upper teeth for a LONG time. Here’s a series of pics to remind my readers of how much work goes in to seeing I eventually get a smile with teeth!

Is this nearly the end? No. Sorry.

I have no idea of the end…of the treatments and the addition of teeth. I know I have weekly appointments till the end of August. I know this is the start of helping me get teeth inside my mouth again. I will be given very explicit care instructions as this prosthesis will be screwed in so cleaning will, at the least, be challenging. I will be guided by my professional team about the progress. I have no follow-up cancer appointment at Chris O’Brien Lifehouse at this stage. I do believe the little ‘hole’ that appeared under my nose post stent re-insertion  in late May has closed over by itself. Phew. Or that would have meant a fifth surgery.

My prosthodontist talks to my Head and Neck surgeon often as they perform other cancer procedures. I also keep in touch from time to time with an email…and yes, they do know about my blog.

I was pleased to meet people from the local Head and Neck cancer support group recently and join a very active Head and Neck cancer Facebook group too.

 

There is more than one Head and Neck cancer…there are many. Mine was contained in the mouth, not spread and was not HPV. I say I am fortunate. I say that a lot.

Wishing you all the very best who read this.

It’s Dental Health Week here in Australia! Do take care of your teeth and mouth. Only 13% of Australians regularly see a dentist. I am one of those…and yes I had cancer detected but that IS not the norm! Just take heed & have a look here.

Thank you!

Denyse.

P.S. I have an update: Monday 6 August my prosthodontist took the stent out from my upper gums and fitted the wax model of my “teeth to be”. He was very pleased with the fit (all his work, over the weeks of my visits and his knowledge and skills) and we both smiled broadly at the result. In 2 weeks it is planned to fit the FIRST version of false teeth (prosthesis) in my upper gums. But on Monday it was the sweetest surprise for us all:

 

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

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Comments

  1. I can you that smile makes my day. I saw this picture on Facebook and you are just beaming. After following your journey and all the difficult times (and all the honesty) you are a pretty amazing woman.

  2. After reading your posts, I have become extra vigilant about teeth and gum health and regularly visit my dentist. And do you know, I didn’t even realise that thyroid cancer was a Head and Neck Cancer too until you mentioned it. I must say, your team have done you proud with those new gnashers – I hope they feels as fabulous as you look!

    • It certainly is part of Head and Neck and I am ‘glad’ my posts help you to be vigilant. When my regular dentist (the one in the post) did my check up of the 8 teeth left, I was impressed that he did a cancer check in my mouth too.

      I think it will take a bit of time to adjust to the teeth firstly being in the mouth. Haven’t got them yet but soon… and then I will know more!!

      Denyse x

  3. Wow, how frustrating that your journey continues but how lucky for the cancer to have been found. I hate the dentist but I will try and visit more regularly for check ups! this post is a good reminder. Health is so important, even if it means uncomfortable appointments.

    Deneale | Goldfields Girl

    http://www.goldfieldsgirl.com

    • Thank you Deneale, I do tell the story pretty regularly as I hope more people, such as yourself, will overcome the dental visit fear in order to keep their mouths well. It is not all about ‘cancer checks’ as it turned out to be for me, but general health of our mouths is so important too.

      Denyse x

  4. Denyse that smile at the end says it all – I’m so happy that the end is in sight now and that soon you’ll be back to smiling and drinking coffee without a straw! Imagine all the biting you’re going to do once you have those front incisors again! It shows how well you’ve dealt with all this by the people who are in your pics and who’ve followed your journey in person and on your blog – you’re a grea ambassador (move over Michael Douglas!)
    #MLSTL 🙂

  5. Thank you so much Leanne. Your words are very kind and touching. I have always appreciated how you have taken that extra bit of notice on my progress and that is lovely. When I first had this wax model put in on Monday quite a few of the Dental Nurses there dropped by to say “wow” and that was the best!

    It IS going to be interesting to eat. I believe that they will want me to try an apple before I leave once they are fitted up top. For now, and into the future, this set of top false teeth will be screwed into the top jaw’s abutments. I will still only have my own 8 teeth on the bottom. At some stage, the prosthodontist will put crowns on my two teeth which will support a future partial denture. I must add, it did feel weird and uncomfy a bit to have teeth in my mouth for less than 10 minutes.

    Tomorrow I am back for another check before the prosthodontist gets the first top set made. There is no talk of final implants at all. I know my gums and lips have to receive these teeth and I have to be able to function with them…and with a water pressure thingy try to clean behind them.

    Food funnily enough has not seemed as important now as the smile!

    Denyse x

  6. Hi Denyse, you smile is lovely because it comes from within and even through the hard times of trying to eat without teeth and fighting the cancer you have still smiled. As Leanne says, what an ambassador! Our ambassador and part of the #MLSTL community. xx

    • Thanks so much Sue. My blogging friends have just been so kind and supportive since I found out about the cancer, that it is so lovely for me to feel cared about by many!

      Denyse x

  7. I love your new choppers. You look wonderful in the pics you shared. I appreciate that you have done so much to bring attention to head and neck cancer. I had thyroid cancer in my early 40’s and had my thyroid and adenoids removed. I was fortunate that they caught it early and it was contained. Can’t wait until you have our new teeth for good!

    • Oh wow, Kristin, I did not know that. A fellow Head and Neck cancer survivor! Thank you for your kind words and yes, I am looking forward to ‘teeth in place’. Just a few more steps first!

      Denyse x

  8. Hi, Denyse – Thank you so much for continuing to share your story with us. You are an incredible inspiration. I agree with the commenters above — your smile is gorgeous, and contagious! #MLSTL

    • Thank you so much Donna! I am learning to love what I see back in the mirror too. It’s been a while since I had a smile…14 months!! Denyse x

  9. Hi Denyse, you tell your story with such honesty, although it can’t always be easy. I admire you so much! Your smile is amazing and you deserve to smile all the time 🙂 #mlstl

    • Thank you Debbie, I think I have had tears at each “new” stage and even this evening when I got home from Westmead and showed my husband the latest shots and a little vid of what I will look and sound like. He thought it was great, I on the other hand need time to process. However I do know that once I get through that stage, I am all goof.

      Yes it has been one heck of a time. Thanks for sharing your wonderful trip too.

      Denyse x

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