Thursday 21st November 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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Not A Smooth Recovery Path For Me: Head & Neck Cancer. 2018.133.

Not A Smooth Recovery Path For Me: Head & Neck Cancer. 2018.133.

Update One: Monday 24 December, is that whilst it is always disappointing to have changes like this in recovery, I am actually able to manage the issue of pain, when it arises and am feeling better in general.

Update Two: Monday 14 January, the pain comes and goes but the news from my Head & Neck surgeon is that he was looking for cancer when I saw him on 8 January. This made me quite concerned. Whilst there was not cancer there as he could see, I do now know there could be another surgery this year. Sigh.

It’s Friday 21 December 2018 and not a normal blogging day for me at all.

But, head and neck cancer recovery is not ‘normal’ I guess!

My blog has been a great source of comfort to me as I can write down what is happening to me, and often receive support in return.

That is lovely.

Today I just need to share this story.

Since my last blog post here, I have continued to be back and forth to the great team I have at Westmead: my prosthodontist and nurse. Each visit since October – when I last saw my Head and Neck cancer surgeon and nurse – has been about:

  • checking the health of the skin which was added to my upper lip (under it) last May
  • checking I am keeping the metal abutments clean where they are attached to the upper teeth prosthesis
  • and fitting me for a partial lower denture to add to my remaining 8 teeth

Showing my mouth’s flexibility – reduced now.

I have had some pain. It is like a sharp nerve pain and each time I mentioned it I was told it is part of ‘re-modelling’ and I have taken that to mean, this will go on as my new mouth and lip settle into their space. I am pretty good at managing pain but earlier this week I needed to share what had been noted by me after seeing my G.P.

  • the pain, which initially we/I thought was from some abrasion of the new tender inner side of the lip against the prosthesis was not likely to have been only from there…because
  • when I tried to use my small micro brush to clean in between the gaps left at the top of the screwed in prosthesis there was  no gap 
  • where the gap had been was skin, resting and immoveable, onto the top of the acrylic prosthesis

After my G.P. saw it, I sent these photos to my Professor and the Prosthodontist. The prosthodontist rang to say, stop using the microbrushes and use the water pik only to clean. The professor emailed to say “come and see me early January for a closer look”.

Yay to having responsive professionals. Very grateful.

Not so happy for the pain it is causing, the lip tightening even more and the disappointment that things are not going as I had hoped. Probably as my team had hoped too!

On the positive side, I have overcome setbacks before AND I trust my professional team BUT this is not a situation I imagined.

Skin does its thing it seems. My post here is about how the stent being taken out too soon prevented the full healing and I needed a 4th surgery and then over 3 months with a new stent.

I seem to think….more surgery may be on the cards.

Sigh.

I am taking pain medication as advised by my G.P. I am doing all I can to treat myself more gently. I am looking forward to seeing the family on Christmas Day here but my eating may be even more compromised by then. Who knows?

Many I know in the Head and Neck cancer support groups are in quite different stages of healing, acceptance of many aspects of their recovery and managing things well. I am buoyed by them, and already support for me and my update has helped. I also know as an Ambassador for Beyond Five, that those of us with Head and Neck cancers are affected by treatments long after the five years.

I am just over 19 months since diagnosis. I am also less patient than some! I am, always very grateful for my cancer treatments and follow-ups in an Australian setting here:

Chris O’Brien Lifehouse

The late Prof Chris O’Brien. In the hospital named after him.

Westmead Oral Restorative Sciences

Thank you for your support, friends from blogging land and readers!

Denyse.

 

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Cancer Is Always ‘There’. 2018.84

Cancer Is Always ‘There’. 2018.84

It is rare these days for me to compose a post and publish it immediately. I have planned posts, scheduled posts and draft posts. Today is different.

I need to write out my truth and my feelings based on recent, significant events for me: a Cancer Patient.

What Do I Mean “Cancer is always ‘there’?”

  • Once diagnosed with cancer I held onto the belief, rightly or wrongly, that my surgery would eliminate the cancer in my upper gums and behind one side of my top lip.
  • It did. In terms of reports back from the many lab results, biopsies at the time of the major surgery in July 2017, and the reassurances from my professional team.
  • However, I do, like many others who have been diagnosed with cancer, “know” that it could come back in another way or form….and also that the reason for my four surgeries has been because I had/have cancer.
  • The many (22 now) visits to Westmead Oral Sciences to have treatments and checks for the progress of my mouth healing, stent wearing and health of my gums is because of cancer.
  • This came home to me yesterday, ONE week after re-gaining what I thought I wanted most: my smile, when it appears that the top lip (cancer site) is tightening again and I need to do some exercises to help it gain more suppleness.
  • There I was, thinking (albeit naively) that the cancer thing was almost gone.
  • Nope, no and not at all really. Check ups, doctor’s visits, mouth checks …..it is not gone nor over by a long way.

Explaining My Mixed Emotions and Responses/Reactions via My Photos.

 

Thank you for reading.
I wonder if any readers who have cancer/had cancer might identify with this.
I am a relative newbie (only 15+ months since diagnosis) yet it feels like I have had cancer forever.
I guess I do.

Cancer is always ‘there’.

Denyse.

Linking with Sue and Leanne here for MidLife Share The Love linky.

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What I Wore This Week. 3. 2018.81.

What I Wore This Week. 3. 2018.81.

Honestly and truly, who has been distracted today and totally forgotten to post:

What I Wore This Week?

Me, that’s who.

For a pretty good reason.

It was, in its own way, a LONG time coming and a busy week at that so the first thing to say is what I wore this week, the MOST was this:

My SMILE. Back after almost 14 months.

It sure was a long time coming, and I have documented that more here and here.

So, what else I wore is here:

Sunday

Monday

 

Tuesday: TEETH day: Before and After!

Edited: I have just heard from Styling You’s Facebook page that this pic about – before and after – has won me a copy of the Nikki’s book as winner of Outfit of the Week. Lovely!

Wednesday

 

Thursday

 

 

Friday

 

Saturday

What did you wear this week?

Denyse.

Linked up with two Aussie favourites: All Mum Said and One Mother Hen this Monday 27 August 2018.

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One Year After My Major Cancer Surgery. 2018.59.

One Year After My Major Cancer Surgery. 2018.59.

This space, Denyse Whelan Blogs, has been a life raft to the outside world and a connection from me to you, the readers and fellow bloggers. I am aware that since my first May post “I have Cancer” there have been a significant number of posts about this cancer and me.

In reaching the 1st year anniversary of the major mouth surgery on 6 July 2017 last Friday, 6th July, I decided that whilst there will be occasional updates, there will be a general easing away from the focus as I get to look forward to a broader life view.

However, I cannot predict when that will be, as a year ago I might have been given the impression that my recovery, i.e. surgeries and healing to gum and jaw readiness for implanted teeth might be 8-9 months. I am in my 13th month now. My mouth has needed a 4th surgery and a second skin graft taken to enable the lip the be more prominent and for there to be enough space for teeth to go in. THIS is why I am on a drive every.single.week until mid August so that my excellent prosthodontist can do the best first stage of teeth for me. Implants remain much further away.

I wanted to do a snapshot of how it has been for me as I have recovered and some of the ways in which I have been able to adapt and adjust to life with no teeth on top, 8 on the bottom, and a skin graft inside my mouth, along with a bone made into a jaw.

Life went on…after hospital but I needed to adjust significantly to home life as I was restricted with movement: a boot on the leg where the surgeons had removed my fibula and skin/flesh for my mouth. I also could eat with difficulty and there were some tears via trial and error. Over time I learned how to better cater for myself after sending my husband on early day missions for soft foods like jellies and mousse. I admit I still find the eating restrictions hard but do what I can to keep up nourishment as I need protein each day and some iron-rich foods. Since late last year I started cooking mini-meals and freezing them.

I am not someone to sit around for long and once I could drive, 6 weeks after surgery, I set out for small drives to be used to both managing the car, and that I was stable on my feet when I got out. I soon re-engaged with shopping. Even though I had not enjoyed shopping before the surgery (I was anxious and I was not interested in clothes or books or even browsing) I found my shopping mojo again when I knew I needed a focus for each day. Along with the enjoyment I have always had for being near the beach or finding places to photograph, going out every day became must-do for my emotional health. I dressed well, had a photo taken and went out to chat with people I met and have a coffee and do some art.

For the first part of 2018, being holidays everywhere, I waited out the time before planned third surgery in February by distraction, activity and going to the beach as well as out for coffee. I had also had a second surgery in November 2017. It was always hoped that the February one would be my last or maybe that was just me??

The February surgery saw my mouth healing well and the prosthodontists took my stent off. This was short-lived (darn it) because my surgeon wanted it back on. Alas, the reason it was needed was the area between my upper lip and jaw was very tight and in fact left no room at all for the addition of teeth. I found out, much to my disappointment that a 4th surgery, and skin graft to make the inside of the mouth even roomier would be on in mid May.

This is where I am at now, almost 8 weeks from that time. The stent is doing the job. It has been mighty sore and uncomfortable at time but my fortnightly, now weekly visits to the prosthodontist at Westmead sees this being removed, trimmed and re-fitted. It can take over 2 hours. Nevertheless I am a very co-operative patient and I want it to work too. Over the coming month and more I will be at Westmead for longer visits and with luck on our side, the first fitting of a set of false teeth for the upper gums.

Thank you if you have read this far.

I was of two minds about posting this. I said to my husband “I am sick of my posts about cancer and recovery” and his comment was “then other people might be too.” However, I also decided that it was IMPORTANT to me to keep the update and to mark this occasion of ONE YEAR since the first surgery and that’s why this post is here. So much of my recovery has been, and still is, mental. It is about attitude, some courage and a willingness to see this through. I have been, at various times angry, impatient, teary, frustrated and downright “over it”.

However, I am MUCH better at picking myself up, dusting myself off and starting all over again…

Denyse.

 

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

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My Cancer Surgery #3. 2018.20.

My Cancer Surgery #3. 2018.20.

Since the diagnosis of cancer in my upper front gums and partially on the inside lip on the right hand side in May 2017 I have had three surgeries. The first, on Thursday 6th July 2017  has been written about in detail and in 3 parts…because it WAS huge!

Here are the links: Part One, Part Two, Part Three.

And over 4 months passed as a lot of healing needed to happen in my recovery at home. My leg was cared for by the Community Nurse who visited for 8 weeks over a few days each time, and my mouth, well it had to heal over time. Before the next surgery there were visits back to Chris O’Brien Lifehouse and to Westmead.

Then I had the second surgery. It was at relatively short notice and was for Day Only stay. So different to last time. But do read the post if you have not because it was a hard start to MY day with my husband driving me down on the same day.

Moving right along now to Cancer Surgery #3.

Again there was a long gap from the previous surgery to this one, but in this case let’s “blame” end of year and January …and that is fair enough because everyone needs a break. And my surgeon sure did! As did the team. But before this surgery and for some weeks in December and January we did not lose touch because as the ‘flap’ inside my mouth healed it was a bit unruly and decided to do things its way so we (ok, my husband) had to take regular photos INSIDE my mouth and send them to Professor Clark. And ‘things were OK’ he said so I managed to take my worry hat off.

I had better understanding of what would happen in Surgery #3 and as my husband agreed with my wish to drive down the night before it was a smooth start the next morning at 6.30 a.m. on an early February Sydney day to walk to Chris O’Brien Lifehouse to present me to pre-admission.

The pre-admission room and beds were full! 7th February was a popular day. This time my husband left me to go back to the apartment where we stayed overnight when I went to theatre. No waiting in the anaesthetic bay for an hour this time…I was ‘first’. Yay. Chatted to the same anesthetist from last surgery, also to my oral restorative dentist and once wheeled in and shuffled onto the bed, chatted oh so briefly to my surgeon.

Back in my waiting space within 2 hours….dressed in an hour…and we were on our way home (2 hours away) arriving there some 5 hours after I started surgery. There was ONE big surprise. How I looked!!

The ‘look’ was the foam squares (they were holding a stitch each) to add some movement but also stability to the stitches that were making MY NEW upper lip…from the skin graft from surgery #2 that was taken from my right thigh. I know, my body is a GIVER!!

The other part of the surgery was to add some ‘abutments’ – screws – to the gum/jaw area to allow for the skin there to keep healing BUT to add a cover – like a mouthguard called a stent – to protect this area.

Oh my goodness. That did fill up my mouth let me tell you, and make eating (and drinking coffee!) particularly challenging. In fact, I literally dipped my foam into a cup without realising (Initially I thought it was blood but it had a coffee aroma!) so I had to be very careful.

The foam – with stitches in –  also prevented me from washing my face and hair so my dear hub learned how to help do their hair wash over the laundry sink with me holding a washer to my face.

It was only a week of being like this as when we returned to Sydney for the check-up the stitches were removed AND the area in my mouth indicated that it was time for a visit to the Oral Restorative Surgeon to start planning the implanted teeth program.

Foam Blocks gone. Mouth very swollen due to stent and surgery.

Update #1.

On Friday 23 February we drove to Westmead to have the stent looked at and the condition of the gums. I was a little nervous as my mouth was stinky (food particles under the stent) and my oral restorative dentist had a broken hand and his colleague (who had attended each of my surgeries) would be undoing the stent and examining the gum with my regular person viewing and commenting.

Firstly, the precision with which the stent had been drilled into the current abutments was spot on and as each was loosened the stent eventually yielded and that stinky thing was GONE. The nurse and the specialist dentist did an amazing job of cleaning the area and as they always do for my visits, photos of the inside of my mouth were taken.

The BEST news was that the gums growing around the 5 abutments are doing as expected and there was now no need to put the stent back on. Phew. Phew. Phew. But now what? Well, I have my gums and abutments on display and have been given all the care instructions I need.

I will be returning to Westmead in 4 weeks to have a temporary prosthesis put in if all is well. 

I hesitated about publishing the photo of my mouth but then I wanted to explain it more:

The little silver things are the abutments with caps on – there are 5 – and they started off being attached to the fibula bone from my leg which was cut and made to fit my mouth*. I have only 5 abutments when they were hoping for 6 but my fibula bone was too narrow in one spot and broke. The redness is OK and the area above the ‘jaw’/gumline is the ‘flap’ which has been harvested from my right leg *and has been cut, stiched and used for different purposes such as burying a skin graft** to make my ‘new lip’ .

Update #2.

Whilst my dental team thought my gums were going well it was when they shared the photos from Friday with my surgeon, Professor Clark,  he saw some small issues with the gums that he thought will benefit from at least another week with the stent in. So….back to Westmead this Thursday for that. I understand the need to make things right and trust my team implicitly!

* part of surgery #1 ** part of surgery #2.

This will be the second last of Cancer posts for a while. I appreciate that there is support for me as I go through this but I also want to update readers too. However, the remaining post, Part Two of Eating after Gum Cancer Surgery will be published in two weeks. Unless there are good reasons for updates, there will be a cessation for a while. Thank you for your interest.

Denyse.

Joining with Kylie Purtell here on Tuesday for I Blog On Tuesday.
Joining here with Leanne for her Lovin Life Linky on Thursdays.
And I will also join with Sue and Leanne here for their Wednesday Link Up.
Thank you all for hosting!

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