Tuesday 16th October 2018

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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Comments

  1. You are fighting continuous battles most people never experience their entire life. I’m sorry about the new surgery and mouth guard. I’m so impressed each time I read a post from you at your attitude and resilience.

    • Thank you kindly Natalie.

      I had not considered before where I am in terms of fighting the battles that pop up but that makes sense.

      This cancer thing has given me much more insight into me and for that alone I am glad. I do have the strength and resilience to deal with it all…even when I can have a whinge about it too.

      Blogging is so helpful for me in this regards, as are the supportive and loving comments from friends such as you.

      Denyse x

  2. The ups and downs must wear on you a bit. But it is great that you’ve got such a professional team and I’m willing to bet that they know a lot more about where to draw the line on stent wearing for the next patient.

    • So true. I went into Surgery #3 buoyant and thinking ‘last surgery, I can deal with this’…and so I did. Unfortunately as I explained the professional team’s choice to take the stent off early because of how the mouth looked was premature (I was delighted but did not know the ramifications) so they too are learning from my surgery.

      As a teacher and learner I see the positives in this as well but feeling a tad more reticent this time around as I know the tedium of the recovery.

      Denyse x

  3. Oh Denyse, what a pain in the patootie for you! Your outlook is so inspiring though and I have no doubt you’ll make it through with your usual humour and realism xx

    • I must admit I was not a happy camper when I knew…and even more so last Tues when the Prof said “months” with the stent!!

      However, I know generally what it will be like and I am doing my best to prepare even to the point of pre-warning hub about the whingeing!!

      I am going to have my face cool/heat thingies ready and not be afraid to take the pain meds.

      But, if it works as it is supposed to then it will be good….and I am sure my Prof is not wanting to repeat the surgery either.
      Denyse x

  4. You’ve already been through so much and I’m sorry it’s taking so long to get to your goal but I know you will get there, even if it takes a bit longer. It won’t be easy but it will be worth it. Your positivity and resilience is so inspiring and so important for your wellbeing and recovery. I love your resourcefulness of eating cake with a teaspoon – where there’s a will, there’s a way! And yes, I remember and “celebrate” all my cancer milestones. It might seem weird to others but to me it’s a reminder of how far I’ve come x

    • Thanks Sammie, I guess I am always pretty resilient and resourceful.

      I like a challenge and it amazes me how I intuitively know what I can and cannot eat.

      No longer can I just ‘go get something to eat’ for my meals…I literally do have to cook and freeze. I have almost filled the freezer again and tonight I will make a batch of plain cheesy risotto which I know I can swallow Ok and it is one of my fav comfort foods.

      Of course, you already know the freezer has lemon syrup cupcakes and some I got from my lovely friend’s shop when I won a $250 voucher to buy….cakes!!!!

      One of the reasons I take (but do not post) a lot of facial selfies is the see the progress and it helps enormously.

      Thanks for your lovely words…and I will get that email back to you within next few days.

      Denyse x

  5. I’m so sorry to hear you have to have more surgery. I agree with what Sam said.

    • Thanks Trish, I am always helped when friends like you and Sammie get it too!

      I will be fine. I have been so far. I was “hoping” to eat properly again sooner more than anything!!

      Denyse x

  6. Oh Denyse your poor leg, but also how amazing that treatment like this exists. I’m sure the drs will learn so much from performing your operations so in a way you’re not only helping yourself, but also future patients. I hope your surgery goes well and enjoy your yummy cakes! #teamIBOT

    • Thanks Toni! My leg is being very good to me!! I admit it was hard to see it when it was healing but who knew our fibula can be harvested like that!

      So true about surgery like mine – it is both pioneering and helping others learn. As a teacher I like that aspect.

      My freezer is chockas with little cakes and little meals for me now, so all I have to do…is get this surgery over and recover well!!

      Denyse x

  7. I’m sorry to hear you have to have more surgery, Denyse. Stay strong and with your great medical team, you’ll reach your goal.

    • Thanks Natalie. Even though it was pretty devastating to learn I had cancer almost one year ago, I was referred to the best head and neck surgical team in Sydney so I am grateful for this over and over!

      Denyse x

  8. You are looking fabulous Denyse, despite all of your surgeries. You continue to provide us all with inspiration and I hope you gain strength from your followers. Thanks so much for sharing your story with us at Midlife Share the Love Party and good luck with the next round of surgery. Sending hugs. xx

    • Sue, thank you for your kind words.

      I know that blogging about this and sharing via social media lifts me up.

      If I did not have the love and care on my readers, fellow bloggers and on-line friends it would be much harder!

      Denyse x

  9. I’ve been fascinated by your journey from the beginning until now Denyse – you’ve handled it with such grace and fortitude. This setback will be another example of you being strong and stoic and showing us how it’s done! Your poor leg has certainly borne the brunt of it too. We’re all cheering for you and looking forward to seeing you conquer this hurdle too xx
    Thanks for linking up with us at #MLSTL and I’ve shared this on my SM
    Leanne | http://www.crestingthehill.com.au

    • Thanks Leanne, I know why you have the particular interest and that in itself is cool for me.

      I may have already mentioned but a dentist saw my comment on the site where I get some homemade cupcakes “I can eat these after surgery for cancer in my gums” and she messaged me.

      She said she always does a visual check of patients’ mouths and hope she never misses anything.

      If only one or two of my dentists had been diligent instead of telling me “you need to clean better behind that bridge”.

      We will never know what caused my cancer but I sure would have liked someone to have acted on the messy, flappy gums sooner!! End of story.

      Thanks Leanne for your kindness and care. It is always appreciated.

      Denyse x

  10. Denyse, I am praying for you. Bless your heart you have been through so much already. I was an oncology nurse before retiring so had some small amount of experience with head and neck cancer which is what we call it here. As one of our doctors here said you have to hate the cancer more than you love your looks because it can be very disfiguring. Blessings for your continued success.

    • Thank you Victoria. Yes we call this cancer under the umbrella name of Head & Neck too. My professor is the head surgeon in the Head and Neck group for this hospital and others. However, I am ‘glad’ that whilst my leg has taken quite a beating, it would seem my face is relatively unscarred despite the number of surgeries.

      It is a different matter inside my mouth of course. So much we take for granted in terms of eating that I miss (chewing and biting and savouring) and hope to have return within the year ahead (I am no longer saying months as it is far, far more time consuming that I realised)

      Your kind words and prayers are very much appreciated.
      Denyse x

  11. That tee shirt not only looks great on you but is the epitome of who you are. Frustrating as this is I know you will push through it with your usual dignity and grace x

    • Thank you Jan, I will remember your kind words. Today is a bit of a wobbly day but I have had a few tears, dried them, done some art, and later I have decided to pop over the the beach before the cold front arrives tomorrow.

      Denyse x

  12. Gosh Denyse. Just as it feels like it’s ending, it starts up again. Such is the roller coaster that is cancer. It’s such a prick of a thing. So happy your right leg is serving you well. Poor right leg needs some extra special care of it’s own. Needs an award for bravery! Can a leg get a bravery award? Let’s create one for it!

    Take care Denyse, Stay strong, It will all be fixed soon,

    xoxo

    • Good old right leg hey! I was thinking initially (July 2017) it would be my left but the right it was due to better blood flow! The bone they took for my mouth was one I had broken and had surgically pinned in 2003. So, it IS amazing!

      I am more reticent about this surgery’s recovery – not the surgery itself – as I recall the pain and the tedium of it all.

      However, I need to move forward from those thoughts and be as positively centred as I can which is always helped by my wonderful friends from blogging and social media!

      Thank you
      Denyse x

  13. I can’t believe it’s been a year – & you’ve come so far in that time. As an aside, I have a picture in my head of you eating that cupcake with a teaspoon – where there’s a will, there’s a way!

    • Yes!! Did a recall recently and it was the weekend of Mother’s Day where I was pretty darned anxious and concerned for the test results that Monday. Which were fine…..until Wednesday when the diagnosis after deeper pathology results were in…was cancer.

      The teaspoon is my favourite item of cutlery.
      It is small enough for the food to fit in my mouth.

      I have a slightly larger one for my weetbix but my spag bol, cakes, jellies, etc are with s teaspoon. Whatever else that can be cut into tiny pieces and put in my mouth using my finger are things like scones, donuts and bread but it is not a wonderful array for nutrition but it is doing OK for now.

      Thanks Jo,
      Denyse x

  14. Oh buggeration! I would be feeling like I’d been punched in the stomach with that news – good on you for you looking at it so positively.

    • Good description!! It was nothing that was my ‘fault’ and this kind of surgery is still new. My surgeon thinks that the stent needs to be on MUCH longer this time and as I disliked it a lot last time, I am in for a bit of an uncomfy time.

      Still, I like to believe that my professional team has my best interest at heart for the outcome so I abide by that…still having a whinge or 3 along the way!

      Thank you,
      Denyse x

  15. One year down the track and you’re still standing strong. It’s been a hard road Denyse but look at you? You continue to amaze me. I don’t know that I could be as resilient and strong as you. You are getting closer all the time to that new smile of yours! xoxo #TeamLovinLife

    • Thanks Min. It is seemingly harder this time round as I actually know how it will feel in recovery. I am not looking forward to the time it will take.

      However, as I may have said before, none of us knows how we will react with a diagnosis like mine and on-going surgeries. I feel better than I have for 4 years because I no longer have free floating anxiety. Sounds weird…

      Well, it is that I know what my health status is and I am in the best hands to get me to the best smile and teeth I can eat with!

      Denyse x

  16. You’ve been through so much and there is so much more to go. I admire your resilience and grace, Denyse. I would be a mess in your position. I hope it all goes smoothly and you have a quick recovery.

    • Thank you Dorothy. I appreciate your kind words. A year ago I too would have said I could not cope with a cancer diagnosis but, I did and have to keep moving towards the goal of having my mouth fully usable.

      Today I cried (again) after speaking to the Prosthodontist about the after surgery procedures because I am needing to do what I have already done again. And, because I asked for a time schedule (I always like that) he said 4 months. That did me in once I had finished talking to him.

      Then, after a quick word with my hub, I realised I have to gather my strength and get through this next surgery and beyond, changes to time estimates or not, so drove over to the beach and took some pics and came home with a more settled outlook.

      I know it’s an up and down time from experience so all I can do is try to manage my emotions as well as my physical health.

      Thanks for your lovely comment. Social media and blogging help me so much.
      Denyse x

  17. Denyse ~ One of the wonderful gifts of social media is being able to connect with and support each other from afar. Your survivor spirit shines through. I had similar circulation issues with my legs about six years ago. The vascular surgeon performed EVLT (Endo-venous laser treatment) on each leg. So far it seems to have done the trick and I’m able to get around much better. It seems like these things come around all at once, doesn’t it? Love your attitude! Keep up the steady progress on your road to recovery. <3 P.S. Wonderful T-Shirt!
    http://www.meinthemiddlewrites.com

  18. Your T shirt says it all – Stronger than you Know. Finger’s crossed that your upcoming surgery goes smoothly, that you are pain free and entertained during the recovery period. You are a rock star.

    • That glowing comment is already helping! So much to be grateful for and blogging to connect is one! Thank you so much Kalpanaa. Denyse x

  19. What a hell of a lot to got through. I think your attitude is amazing and I will be keeping all fingers and toes crossed as your journey continues.

  20. Good luck with this next hurdle. You will be in my thoughts!! Keep writing it all out!!!

  21. It’s been a year already!!! Sorry to hear that more surgery is required but you will get through this. Thank you for sharing your journey and courage with us.

    SSG xxx

    • A year since diagnosis and then on 6 July the year since BIG surgery!

      I am disappointed about this upcoming surgery but when it’s relatively new and it’s a team approach (surgical and prosthodontist) there is even more for them to learn. Essentially the stent was taken off too early and even though it went back on for w while, the gums just grew too well were they were not meant to. SIGH.

      So, I feel it is going backwards but to get the best outcome it is what I have to do.

      Denyse x

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