Sunday 17th November 2019

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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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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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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