Wednesday 20th March 2019

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 Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

I recently wrote Part One of the Anniversary of my cancer diagnosis here.

The second part is actually a bit harder to write.

I am grateful of course for my cancer being taken via surgery but I seriously had no idea that to recover and be implant-ready would be up to and well over a 12 month period. This is because, as I understand it, bodies heal in different ways and react like that too. I also know that this mouth reconstruction of mine necessitates a lot of work by the multi-disciplinary team of medical, allied health and dental experts.

I am ever-grateful for this team.

With Prof Clark & Cate Froggatt, Clinical Nurse Consultant & Surgical Assistant

I know that my Professor Jonathan Clark  leads the Head & Neck team and he is also working with the training of other doctors just as he learned as a resident with the late Professor Chris O’Brien at Royal Prince Alfred (RPA) Hospital. From the Westmead Oral Sciences comes  my Prosthodonist, Dr Suhas Deshpande and his colleagues including Dr David LeinkramDr Matthew McLachlan. Dr Deshpande’s Nurse, Ofelia has seen me through some emotional times and is a very kind person. Norma at the reception desk at Westmead Oral Sciences always has a smile for me and a welcome that’s bright.

Associate Professor Ardalan Ebrahimi was the first person I saw on May 18 2017 and who examined me and put together, along with Professor Clark what would be my BIG surgery in July 2017. A/Prof Ebrahimi was kind enough to respond to my 2 detailed emails pre-surgery and saw me post-surgery in 2017 along with  Justine Oates Head and Neck  Nurse Practitioner who re-dressed my wounds and ensured continuity of care once we were back home on the Central Coast.

In my 10 days post Surgery #1, I was cared for by a number of professional nursing staff firstly in ICU with Dr Tim  then on Level 9 North of Chris O’Brien Lifehouse where Jason was the NUM. I will single out registered nurse Roan as he cared for me most early mornings and made sure I got out of bed to get some sunrise shots!

From the Head and Neck team who were part of my first surgery was a team of doctors including Dr Laura Wang & Dr Rahaul Jayaram who saw me most days in hospital.  Allied professional staff  at Chris O’Brien Lifehouse were physiotherapist Leah ensured I could walk post July surgery after fitting my right leg with the boot, dietitian Jacqueline gave me lots of guidance for eating post mouth surgery and the speech therapist Emma made me drink a cup of water (ahh!) and speak ( not a hard task given my propensity to talking!) to ensure I was going well before leaving Chris O’Brien Lifehouse last July.

I thank the wonderful anaesthetists and anaesthetic nurses who ensured not only that I went to sleep  but that I woke up with no dramas. One was Dr Murray Stoken and another is Dr Paul Goonan. On 16 May I was cared for by Dr Stephanie McInnes. 

Of course I have the excellent and fabulous Cate Froggat, my Clinical Nurse Consultant & Surgical Assistant who is the gentle and smiling person looking out for me in the operating theatre and in post-op consultations.

How could I not mention Julie and Priscilla…a hug and smile each time I see them, those who keep all of us seeing Professor Clark organised with compassion and care.

Once I was home, as I have outlined before, I was also in the care of the Central Coast Public Health Community Nursing Team for around 2 months and Eileen was amazing with her knowledge and advice.

My dentist Dr Alistair Brown saw me for a mouth check last October and to clean the remaining ((and oh so important to me) 8 bottom teeth. He was the person who initially referred me to Dr Stef Calladine, oral surgeon,  who did the biopsy last May and broke the news to me over the phone that I had squamous cell carcinoma. I will always be grateful for her caring manner and more importantly for referring me to a place I had heard of called Chris O’Brien Lifehouse and to a specialist I had not, Prof Clark.

My GP. Dr Owen Greene. What a caring and understanding man he is. I saw him sometimes up to 4 times in a week when I was recovering from BIG surgery #1. He reassured, he checked on me and he continues to do so, letting me know you are doing really well. His office staff and pathology people ask how I am going tooIf I pop into the chemist next door, Tim the pharmacist is always asking how I am going too.

There are those that I cannot mention all by name but have been integral to my diagnosis, surgeries and recovery times:

  • staff at the various Imaging places in Sydney and on the Central Coast
  • staff at the Admissions Desk and Pre-Surgery Desk at Chris O’Brien Lifehouse
  • the nursing staff pre- and post-op in the recovery areas
  • my psychologist from the READ clinic in Erina saw me a couple of times and was most kind in her assertion that I was doing well without any more need for her services.
  • the social media account for Chris O’Brien Lifehouse @chris_obrien_lifehouse & the art programs at COBLH @arterieatlifehouse (Instagram)
  • those lovely people who welcome me to their coffee shops like Randa at Fibonacci Wyong  and ask after me, along with my fabulous hairdresser Tiffany, our great podiatrist Sean who came to the house to treat me when it was easier for me, and our Property Manager, Naomi, who was delighted to see me recently. Kyla who makes the most delicious cupcakes always asks how I am going when we catch up. In fact, I won a generous voucher recently and as cupcakes are something I CAN eat, this is just the best!
  • the Beyond Five Organisation: Nadia for her reaching out for me to help with publication of my story written by Kirsty. Check my photos here to see the fundraising ribbons. World Head and Neck Cancer Day in July 27. I wear my ribbon and blog about Head and Neck cancer because not many people know about this cancer. I do now!

Then definitely NOT last nor least are my friends and family. Those who connect on-line too. My blogging friends, my instagram friends and those from Facebook and Twitter. I love connecting!  To know of so much love, concern and care being out there for me after the diagnosis and through recovery in the year it’s been is marvellous. Thank you for reading my posts, checking out my Instagram pics and ‘liking’ the blog Facebook page.

Each day in 2018 I made a commitment to myself to do at least these three each day:

  • get dressed in an #outfitoftheday and go out – for a coffee, a browse, a shop or just to look at a view
  • go into nature or observe nature and then capture this in a photo
  • make something creative, be it a mandala or a pattern or just so art fun.

I cannot single any one person out from family and friends….other than this person:

My husband. There for everything for me. Always. Love IS what keeps us together…and has done for over 47 years.

Sending everyone my love and gratitude.

Denyse.

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

On Thursday this post links with Leanne here.

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It’s More Surgery For Me. 2018.40.

It’s More Surgery For Me. 2018.40.

In the overall scheme of things (OSOT as my husband says) this up and coming surgery is “just what it is”. My mouth has not healed the way it might have – nothing to do with my health. Apparently the previous stent, added during surgery in early February 2018 just was not on for long enough I was told last week by Professor Clark. I was also told, that some more skin will need to be harvested from my fabulously (my word!) giving right leg for that to happen. OK. Sigh.

My right leg is such a good one: here’s a collage of how much it has helped….and healed! I am one lucky lady.

But I still found the news harder to absorb because of the details. I knew the surgery was necessary after the Professor and my prosthodonist talked then let me know before Easter. What I did not know was that I would be having ‘the stent, the stinky stent’ in for MUCH longer than before. I had a little weep about that on the way home because I know how that felt in my mouth for the few weeks last time.

So…what’s a blogger to do? Write about it and add a photo or three.

On Tuesday 1 May, following that visit in the afternoon, I wrote this post on Instagram and I admit it was to write it out rather than let it sit inside my head and I received the love, support and care from many. I have always been buoyed by this because I am socially and physically isolated here on the coast, and having friends on-line helps greatly!

Of course my husband is the best listener and advisor. My extended family gets concerned about me too but I like to think I am confident about how things go for me.

Today I was here at Chris O’Brien Lifehouse, Camperdown in Sydney, for my pre-4th surgery consultation with my lovely Professor. This is the view down to the ground floor from Level 2 as we were waiting. We heard the piano being played beautifully later & I got to meet the lovely art-making person & make a card. It is a most welcoming and caring place to be even though why most of us are there is not for a reason we choose.

Today I learned that I will need more surgery, the addition of a stent (mouth guard) as I had in February for only weeks …will be in my mouth for months this time. This is not a pleasant thought but without it, the gums and mouth area will not stay in place for my (future)implanted teeth. . My memories of this last time was that it is uncomfortable, gets stinky & will impede eating even more. And it hurt at times. I will need more visits to Westmead in the weeks following the surgery for the prosthodontist to take the stent off & clean around it & put it back.

Additionally I learned that my lip will need more skin. My right leg will be the source of a second skin graft from the thigh. This experience last time meant a bandage on for 2 weeks, no showering and after that time, to have a bath and over time the bandage and the healing patch will come off.

To say that I am a bit disappointed is true but…… surgeries such as mine are new, they require skills and knowledge gained each time a patient is presented. So, wondering how to manage my thoughts and feeling about this, I decided that writing it helps; as does showing appreciation for all that has been done for me so far and helped me recover from the nasty news last year that I had Squamous Cell Carcinoma in my upper gums.

The day I have my 4th surgery at Chris O’Brien Lifehouse will be Wed 16 May 2018 (day surgery)

That is one day short of the first anniversary of my cancer diagnosis on Wed 17 May 2017.

Read about that here if you are new to the blog

I was on Level 2 (where I stood today)  the very next day, 18 May 2017 to meet both the Professor and Associate Professor who would be doing my major surgery in July 2017.

That it is almost one year is both scary and amazing.

Thank you friends here and on FB for your support, kindness, messages and love.

This is what I know I will be looking like again. I guess it helps me to understand more. I am disappointed but I also trust my professional team implicitly and know what they learn each time they do this kind of complex reconstructive surgery is likely to help others.

I am dealing with this positively and with courage. I am going to wear this more, I think!

I will be spending more time batch cooking as I know I have to eat as well as I can but I also know the restrictions.

Thanks for reading thus far! I know this cancer story of mine is quite dominant at the moment which I believe is linked to The One Year Since Diagnosis coming up.

Do you remember certain days/times of year for different reasons?

I sure do.

I have always been like this.

I know there have been quite a few posts about this cancer and surgery but I am grateful to be able to blog about it and hope that you can have patience with me as I continue to get towards my goal of…..implanted teeth!

Thanks to all who read and comment. I am buoyed every time as I said in that Instagram post last week.

Denyse.

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

On Thursday this post links with Leanne here.

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