Saturday 11th July 2020

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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Two Years Ago: Before My Cancer Was Diagnosed. Series Concludes. 51/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Series Concludes. 51/2019.

This is the final post in the series of five.

Thanks to you all for continuing to read and comment about this very difficult time in my life.

It is only by the review of how it was, I can see and sense just how much I did endure before the cancer diagnosis!

In this month of May, I am reminded by the outside signs: weather, temperature, clothing AND the dates on the calendar exactly what is coming up.

The 2nd anniversary of being told I had cancer.

Wednesday 17th May 2017 at 9.35 a.m.

From the writing of the fourth part of this series till the timeline of this final post, I can remember:

  • trying my best to distract myself from the pain of the mouth after the extractions, thinking “this must be how recovery feels”
  • telling myself that I would be OK even if my emotions were telling me differently…via IBS and anxiety.
  • looking out for ways in which I could share on-line, via blogging and instagram to help me focus on other than my mouth
  • waiting for the first appointment in early/mid May to come so I could return to the dentist
  • keeping myself ‘busy’ with more learning about mindfulness, which included this:

Then mid-May arrived. I needed to visit my former GP on Wed 10 May 2017 to say farewell now I had found our new and current one close to where we live, and I needed some female tests done. I also had the appointment with the dentist on Thursday 11 May 2017.

This mouth of mine was so smelly, sore and downright worrying. I had not really shown the doctor even though I had seen her regularly for 2 years because it was not until the extraction on 6 April 2017 that much became visible.

Once I took the denture out, she GASPED and put her hands over her mouth. NOT a confident move but one I know was from shock.

This view spares you the details but it was no pretty at all. She made immediate arrangements for me to have a CT scan of my face – sinuses etc as she was thinking cancer and an OPG which is a special 360degree X-ray for the mouth. She knew I was seeing my dentist the next day.

Off I went home with a pit growing in my stomach…and of course, I could not think of much else. On the Thursday, I arrived at the dentist’s office with my little cakes and a card to say “thanks for caring for me at the extraction appointment”. Nice. Then it was his turn to express shock – but in a less dramatic way – after seeing the state of the gums AND to send me to the Oral Surgeon for a biopsy. THAT was sorted out very quickly when the Oral Surgeon saw me on the Friday 12 May AND could do the biopsy then. A sneaky suspicion I now have – in a good way – is that my dentist got in touch with her quick smart and said “asap” please.

Whilst I DID get through that Friday, knowing I had to wait till Monday for the results was H A R D…and it was Mother’s Day, 14 May 2017, on the Sunday. To be frank some family issues were making this a day that I was not looking forward to much but, as Mum, I did my best to cover my feelings. Not very well, though as even in this photo I remember all I was thinking about was the results the next morning. I did tell my daughter as she was leaving that I had some test results coming.

Monday 15 May arrived and once the time arrived that I could call to see if the results from the Imaging places were in, I did and I went to collect them: no sign of anything sinister. Breathe out….. Later that day the oral surgeon called with initial biopsy results …nothing sinister found….breathe out….and I called both my Dad and daughter with the news. My husband already knew.

Phew. Dodged that.

Not so fast apparently. It still did not make sense that I had this weird gum thing happening but I took the words of the professionals and believed them.

Wednesday morning, 17 May,  my husband was at Lifeline doing volunteer counselling and I was still in my chair, finishing off the morning paper after breakfast. The home phone rang and it was the oral surgeon. She apologised for the call, but had the detailed pathology report and it was squamous cell carcinoma in those nasty gums of mine. I was shocked but not surprised as I have said before…”it HAD to be something major”.

From then on, it was all-systems go…to a certain extent. I know I had to really get myself into headspace where I could deal with, of all things, the travel to and from Sydney the very next day…and the next two weeks and I did. Typical of me, on that Wednesday, after my husband arrived home and I had my big cry, I was able to go into organisation-mode, and call Lifehouse to find out who Dr Clark was (!) and to plan our trip. I did these trips and managed what I did thanks to my own work, my husband’s amazing support and our GP’s wise words and advice.

The rest of the cancer story is here….and these last words and the photo are of me prior to the first, big surgery in July 2017 and of my thoughts beforehand.

“last smiles” were/are treasured but under those false teeth it’s cancer

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.

  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?

  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.

  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.

  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.

  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.

  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 

  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 

  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 

  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

     

Thank you dear readers and commenters. It has helped me enormously to be able to document my cancer journey. At the time of publication, it will be almost the 2nd anniversary of my diagnosis. I am so pleased to be well and at this point. Incredibly grateful to many! I will be seeing my Professor, Jonathan Clark and his wonderful assistant Cate next week for what I hope will be a positive outcome and the intervals between cancer checks will spread from 3 monthly to 6 monthly.

I will have seen my prosthodontist on Monday 13 May so I hope that went well.

It did go well. I am maintaining my prosthesis well. Good news!

 

Yay for modern treatments in Australia and reconstruction surgeries that have enabled this senior citizen to have her ‘mouth’ as functional as it can be thanks to the marvels of modern surgeries and the healing powers of my body.

Denyse.

An unlikely entrant for Zen Tips Tuesday, I know, but I sure know I employed a LOT of skills to stay as calm as I could on this occasion in particular. Thank you Min for your link up here.

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

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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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I Have Cancer. 2017.72.

I Have Cancer. 2017.72.

Some news I need to share and it’s not great. I have cancer. I remember people telling me I had a nice smile.

It’s bye-bye smile for a while

My dentist has been treating me for some small overgrowth of the front top  teeth since January 2017.  It has grown. More than ever.

Over time it was my choice to eradicate the gum overgrowth by having  my front 6 teeth and  bridge removed, replaced by a temporary denture,  and

the hope was the gums which were irritated would settle. Some 5 weeks later they had not. When I saw him on Thursday 11 May, we agreed I needed a biopsy of the gums. Fortunately the oral surgeon, next door, could fit me in the next day. I also had CT scans and x-rays of my mouth as my GP was getting concerned. The CT scans and X-rays were fine.

On Friday 12th May I had a biopsy and  the good news from the pathology on the following Monday 15th May was unfortunately premature as on Wednesday  17th May I was called by the oral surgeon to say that the top gums where the overgrowth lies are cancerous with squamous cancer cells.

To say it was a shock was an understatement and I am still a little bit that way. I was alone at home but after a quick phone call to my husband counselling at Lifeline meant  he was home within the hour.

The oral surgeon was fantastic because she rushed a referral to the Lifehouse in Sydney, where the specialist head and neck clinic is, and that afternoon the practice manager rang to say I could see Associate Professor  Aradalan Ebrahimi at 3 p.m. in Sydney Thursday 18th May at the Chris O’Brien Lifehouse in Camperdown Sydney. My original referral was for Professor  Jonathan Clark but as the two doctors work together I was fine with that.

http://ad009cdnb.archdaily.net/wp-content/uploads/2014/10/54406d61c07a801fe7000441_chris-o-brien-lifehouse-hdr-rice-daubney_image1_brettboardman-530×353.jpg

 

It might sound weird but I have had huge issues with worrying about travelling distances in the car on the M1  because of IBS. I was stressed anyway, let alone having IBS come along at any time. But, with some kind words from our local and new GP about ‘take the valium, take the immodium, you will be ok’ I was. My lovely husband drove and stopped at any toilet where we could find one. I was one nervous lady. We got to Sydney (haven’t been for over 2 years!) within 2 hours, found a park under the Lifehouse…and waited only 10 minutes. We left home at 12.30 pm and were back by 7.30 pm. That day the Motorway played nice. Thanks M1. Back to the story. 

A/Prof Ebrahimi was incredibly kind and professional and we are all on first name terms. Mind you he is around our daughter’s age. I had a full exam of the mouth, a light on a cable went down through the nose to my throat and I had a  physical examination of the neck and lymph glands. It is hoped that the cancer is all in the one place. The top gums at the front and there is some spread inside my top lip. Sigh.

As he started to explain what would be involved in the 10-12 hours surgery,  in my mouth where they will take the tissue out and  surrounding areas. I became more and more overwhelmed. There was this too: they will be replacing the inner part of my palate, my jaw at the top and gums with skin/muscle tissue and bone from my left leg. The bone will have implants put in for future teeth to be added. As  I was told that I had quite a melt down at the thought of the hours ‘under the anaesthetic’ most of all…and that is meant this was a BIG operation.

The associate A/Professor kindly gave me a few minutes to go for a little walk with my husband and check out the view from the building’s windows overlooking Sydney Uni, then I was calmed with the help of a half valium before moving on to the details of the surgery itself. By this stage, his ‘boss’, Professor Jonathan Clark came in and together they came up with more details of the plan for the operation.

Mouth (oral cavity) My Cancer area. 

The mouth includes the lips, gums and tongue. The tongue is the largest organ in the mouth and is made of muscular tissue.
The roof of the mouth is formed by the hard palate. Behind the hard palate is the soft palate, which is an arch of muscle behind the hard palate, going into the throat. The soft palate lifts to close off the passageways to the nose so food does not go through the nose on swallowing.  Source:Lifehouse.

 

Prof Jonathan Clarke. http://www.mylifehouse.org.au/wp-content/uploads/2016/04/Jonathan-Clark-e1461566255963.png

However, the thoughts are as of now – before I have further CT scans to rule out anything unseen by my previous clear CT of my sinuses – that there is no spread but that recovery from this will mean 10-14 days in hospital. I will have ‘two’ areas in my body to recover from: my left leg and my mouth. I may be in intensive care for a while too.

About the Head and Neck Service

The Head and Neck Service at Chris O’Brien Lifehouse brings together over 40 highly skilled medical and allied health professionals including surgeons, radiation and medical oncologists, dental specialists, speech therapists, specialist nurses and dieticians, along with research scientists and data managers.
The Service has a national and international reputation for excellence. More than 450 new patients (200 with cancer) are seen annually and the computerised database of the department is the largest in Australasia.
The Sydney Head and Neck Cancer Institute (SHNCI), founded in 2002 by the late Professor Christopher O’Brien AO to provide comprehensive, state-of-the-art treatment to patients with cancers and diseases of the head and neck, is also an important part of the Head and Neck Service providing funding for two head and neck clinical fellows each year. Source: Lifehouse

After telling our close family, I reached out to share my news with some lovely on-line and IRL friends. Their support was amazing. Now I am making it public here, on Facebook and Twitter because I need the love and support to surround me as I go into something I had not predicted. Ever. Yet, so many of us affected by cancer. I have not once thought ‘why me?’ more like ‘why not me?’

I have the best people in the profession looking after me at the Lifehouse in the Head and Neck Clinic started by the wonderful, but late, Professor Dr Chris O’Brien. He became one of the ‘stars’ of the TV  show RPA (Royal Prince Alfred Hospital).  The Lifehouse built in his name is part of RPA and accepts both public and private patients. I am being treated as a private patient. Professor Clark was trained by Chris O’Brien in this speciality of Head and  Neck Surgery. Chris O’Brien’s vision was that he always wanted cancer patients to be in one place and this is it.

Professor Dr Chris O’Brien. http://www.bing.com/images/search?view=detailV2&ccid=zJK%2btLzW&id=BC8CED97E14A6AD24D66DE0C67BD5E7B467E25AB&thid=OIP.zJK-tLzW3gePAyHJjObiDAEnEs&q=lifehouse+chris+o%27brien&simid=608053618380309990&selectedIndex=21&ajaxhist=0

 

My operation will be there, I stay there and have my tests and any follow-treatment there too. Mind you  we don’t live in Sydney anymore and  it’s 2 hours from here but that is the price we pay for living in regional NSW.

Tomorrow we will travel to Westmead (Sydney) Dental Clinic where the specialist in oral reconstruction will examine my mouth for the first time to come up with a ‘template’ for reconstruction. I will have a further visit to him for a final measurement, and a big series of CT scans prior to the team involved in my surgery coming together and then sending the details overseas where a software program will plan my surgery. Apparently there will be two teams working in conjunction  with me. No, we haven’t asked for a quote (yet) but we do have top private health insurance and we have asked for a discount where possible as we are on a relatively low income as part-pensioners.

All good vibes, thoughts, prayers and wishes are accepted with appreciation!

Thank you.

Denyse.

Joining with my friends who blog on Tuesday here with Kylie Purtell.

Already lots of  love comes from here…the Lovin’ Life linky with Leanne and friends.

 

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