Sunday 22nd May 2022

My Head & Neck Cancer 1st Anniversary. Pt 1. 2018.44.

My Head & Neck Cancer 1st Anniversary. Pt 1. 2018.44.

Writing this post I feel a surge of gratitude for my cancer diagnosis.

Weird?

Well, for me, BEFORE I knew that there was a nasty cancer called Squamous Cell Carcinoma in my upper front gums, I was anxious, fearful and this had been building up for the 3 years since just before we left Sydney to come and live on the Central Coast. My life was reduced to managing a sense of fear any time I needed to leave the house. Whilst it was not quite crippling, because I have a very determined edge to my nature, it was not how I liked feeling. AT. ALL. Blog posts here and here tell more:

In early May 2017 after a series of medical and dental examinations, CT scans, X-rays, a biopsy for gums that were not only NOT healing after the teeth and bridge had been removed  but were growing ….the news came through about WHY. The posts about my cancer can be found here.

Words are few but pictures tell much of my story. Away we go. Oh, and I AM someone who takes lots of pics and am grateful to have this record.

Part One.

In the lead up to the first Anniversary of my diagnosis I had thought this post could be a ‘thank you’ one.

I did not realised until late March that I would need a 4th surgery. However, I accept that the mouth still needs more work ….and I am trying not to whinge too much about the fact I will be having the ‘mouthguard/stent’ in for much longer AND another skin graft….because whingeing is not cool. This post is going live AFTER my 4th surgery on 16 May 2018.

I have accepted that there is no real END time with cancer.

I will be having checks until mid 2022. Then, as with most head and neck cancer patients, there is more to come, such as management of my implants over time. See this wonderful Australian-based  support site: BeyondFive here.

So, no “thank you and farewell post” for Part Two. Just more gratitude and let me show you who those people are and why I am grateful!

Part Two is scheduled to go live on Tuesday 29 May 2018.

Denyse.

In many ways I hope, that as I am a teacher AND a learner, anyone who knows someone with Head and Neck Cancer might find my posts helpful. It is one of the reasons I blog: to share, to learn and to connect! My page above has my other posts relating to my cancer story.

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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Eating After My Gum Cancer Surgery. Part Two. 2018.24.

Eating After My Gum Cancer Surgery. Part Two. 2018.24.

Now where was I?

Oh yes, about my eating after cancer surgery. Part One is here.

Let me tell you this eating with only 8 teeth on the lower jaw and one tongue has called for:

  • imagination – what might that food feel like in my mouth and will it be able to break down to enable swallowing
  • care of my mouth. Yes, this mouth needs even more oral care now. So it is brushing of my teeth and rinsing with a particular mouth wash after morning and evening meals
  • shopping lists for foods I had not previously considered eating but do because of nourishment and ease of eating
  • trying to remain creative with meal choices for me while I am very restricted. It is hard and I do get frustrated but I try to remember it is not forever
  • nothing that is pre-made or take-away (boo to having to make everything from scratch) unless it is a plain cake, a scone or yoghurt.

My mouth: at least the lips seal but it remains a challenge to get any drink into it. I use a ‘squirt’ water bottle and when having a cuppa – tea of coffee – I have a serviette under my mouth. Messy Me.

As the initial months changed from me being dependent on my husband for meal-prep and shopping to me doing this for myself it did give me freer rein for creativity and independence but in some ways in was harder. My husband eats very simply but from a different meal-base to me (and it has been like that even before my cancer) so there have been few shared meals….except for that one time, before I had surgery #2 and he made a Baked Lamb Dinner…which was so soft and delicious and easy-t0-swallow the memories are fresh!

MEALS & SNACKS.

BREAKFAST.

Once I learned that tiny slivers of toast do not equate with a satisfying breakfast, this long-time cereal avoider embraced weetbix and I am a two weetbix, sugar and milk girl every day.

MORNING TEA.

This is mostly Morning Coffee as I go out each morning around 10.30-11 for my daily outing. See more about that here. More often than not it is just a coffee but on some occasions I can add a treat. It takes me a long time to eat some of these and I often bring part of it home.

LUNCH.

If I have had a snack as above I will not have anything for lunch…because I will still be full and I cannot find the energy to try to decide what I will take ages to make and then ages to eat. It is true! However, I know the value of nutrition and need to give myself more credit for knowing actually what to select and eat it. The last few weeks I have found it harder as I have a 3rd surgery which has left me in some discomfort and even less room inside the mouth as a stent is in there where the implants will eventually go.

On the way home from Sydney when I saw the Professor recently my husband ate the cheese sandwich we took for him and I had a little kids’ yoghurt with the squirty-top.

AFTERNOON TEA.
Depending on how much I have eaten at lunch, this may not be anything or it might be a cup of tea with biscuits that can be dunked. Yes. Only those. I have tried a few but only these work for me: Malt biscuits, Scotch Fingers, Orange Creams. Even gave Tim Tams a go but the biscuit part was too hard for my mouth.

DINNER.

I have always cooked in bulk for me and for my Dad. I often made spag bol variations and beef casseroles and chicken ones too. However, I am someone who craves variety and I was O.V.E.R. anything with chicken once all of the chicken soup with vegies were done and even those with added noodles. I had low iron after surgery so determined to eat myself better (along with the iron tablets) I used red meat meals.

I made and still have in the freezer in small meal sizes for me: Beef Casserole and Veggies  along with smoothly blended mash potato & sweet potato frozen in small meal sizes to add on top. Spaghetti Bolognaise and Pasta Bake. For a change of taste, some Salmon. Cheese and Rice meals which are a comfort meal I invented ages ago. I have also cooked chicken mince with sweet and sour sauce to add to rice.

OTHER SNACKS AND TREATS A.K.A. BEATING THE BOREDOM.

Firstly what you need to know:

I cannot bite anything.

I cannot, at the moment, completely seal my lips.

I cannot use a straw because of how my mouth has been changed.

I can put very small bite-sized pieces of suitable food into my mouth, allow them to move against my lower teeth along with some encouragement from the tongue and then when I believed they are small enough and soft enough I swallow.

I have not choked (yet) but I will always have water bottle next to me when I eat.

I use a teaspoon for eating my meals & some snacks unless it is bite-sized as above and I can use my hands.

The softer and wetter a food is, the easier it will go down.

 

PUTTING IT INTO PERSPECTIVE.

I miss the many textures and tastes of so many foods  but I am also grateful to be able to eat after this surgery as not all of those having surgery like mine get to do that. Some have to eat permanently through their stomach or via a feeding tube. I do try to keep my whingeing to a minimum as a result.

I am so very grateful to the team who has brought me to this point. From Friday 23 February my trips to Sydney will be to Westmead Oral Restorative Services where my upper jaw implants are being planned. Currently the most recent surgery saw a large stent/mouthguard put over the area where the implants will go and it has made my mouth quite painful. Eating has been even harder.

I am over 9 months into my cancer journey and am hopeful that all that needs to be done will have occurred by the time May comes…my first year anniversary. We shall see! Meanwhile, I will be doing some more ‘out for coffee’ visits and eating as safely and nutritiously as I can.

Sunday Night Dinner: my invention…taco in a bowl!

And me on Sunday 18 February. Check out my top lip! My mouth above is swollen because of recent surgery to add more skin to my top lip (thank you) and added in there is the stent pushing the top jaw forward. Uncomfy, yes. Worth it. Hell Yes.

I hope that you have found reading both parts of my story of Eating After Gum Cancer Surgery of interest. My operations took place here at Chris O’Brien Lifehouse and the Team headed by Professor Jonathan Clark performed all three of my surgeries. I follow Head and Neck Cancer Support Australia on Facebook and Beyond Five

On Friday 23 February I visited Westmead Oral Health Services and the two men who are part of my surgical team as well, determined that I could do without the stent for the next 4 weeks and so this was good news. My photo updating the one above is here:

UPDATE: 

Unfortunately my relief was short-lived as when my surgeon saw the pictures of my gums on Monday 26 Feb he wanted the stent returned on my  visit on Thursday 1 March. At the time of publishing this post I will be two days away from having the uncomfortable hard plastic stent removed and first impressions made…..which mean teeth will take months from then but my prosthodontist says “we have to get it perfect, Denyse.” Sigh.

Denyse.

Linking with Kylie Purtell for I Blog on Tuesdays here, with Leanne here for Lovin’ Life Link up for Thursday’s Lovin Life Linky  and on Wednesday, with Sue here for her link up.

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My Cancer Surgery #3. 2018.20.

My Cancer Surgery #3. 2018.20.

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

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

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

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

Moving right along now to Cancer Surgery #3.

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

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

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

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

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

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

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

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

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

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

Update #1.

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

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

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

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

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

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

Update #2.

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

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

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

Denyse.

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

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