Monday 24th September 2018

Cancer Is Always ‘There’. 2018.84

Cancer Is Always ‘There’. 2018.84

It is rare these days for me to compose a post and publish it immediately. I have planned posts, scheduled posts and draft posts. Today is different.

I need to write out my truth and my feelings based on recent, significant events for me: a Cancer Patient.

What Do I Mean “Cancer is always ‘there’?”

  • Once diagnosed with cancer I held onto the belief, rightly or wrongly, that my surgery would eliminate the cancer in my upper gums and behind one side of my top lip.
  • It did. In terms of reports back from the many lab results, biopsies at the time of the major surgery in July 2017, and the reassurances from my professional team.
  • However, I do, like many others who have been diagnosed with cancer, “know” that it could come back in another way or form….and also that the reason for my four surgeries has been because I had/have cancer.
  • The many (22 now) visits to Westmead Oral Sciences to have treatments and checks for the progress of my mouth healing, stent wearing and health of my gums is because of cancer.
  • This came home to me yesterday, ONE week after re-gaining what I thought I wanted most: my smile, when it appears that the top lip (cancer site) is tightening again and I need to do some exercises to help it gain more suppleness.
  • There I was, thinking (albeit naively) that the cancer thing was almost gone.
  • Nope, no and not at all really. Check ups, doctor’s visits, mouth checks …..it is not gone nor over by a long way.

Explaining My Mixed Emotions and Responses/Reactions via My Photos.

 

Thank you for reading.
I wonder if any readers who have cancer/had cancer might identify with this.
I am a relative newbie (only 15+ months since diagnosis) yet it feels like I have had cancer forever.
I guess I do.

Cancer is always ‘there’.

Denyse.

Linking with Sue and Leanne here for MidLife Share The Love linky.

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Appreciation In August. #4. 2018.80.

Appreciation in August. #4. 2018.80.

This post is short on words…but long on gratitude and appreciation.

This collage represents much of my cancer story: from diagnosis in mid May 2017 through to adjusting to the notion I had cancer …then surgeries…four in all…and recoveries…and 21 visits (and more to come) to the prosthodontist at Westmead as of Tuesday 21 August 2018..

 

But it’s been a BIG news week for me and I wanted to share (via two little vids) how I was on the day before my new upper teeth were added to my gums/jaw (remember, they came from my right leg) and then the day after….

It is for me as much as anyone as we cannot always notice our own progress which is why I made these.

 

And then….my set of upper teeth (prosthesis) was attached (screwed in) to the abutments in my jaw (thank you fibula) on Tuesday 21 August 2018. For 412 days I had no upper teeth!  Here I am talking….cannot stop me…24 hours later!

 

Thank you to all who have commented, read my posts and supported me in so many ways that I cannot count.

I appreciate each and every one of you.

You are my cheerleaders!

Denyse.

Thank YOU Each & Every One of YOU.

Joining with Leanne for Lovin’ Life Linky and Leanne knows all about the value of cheerleaders!

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Appreciation In August. #3. 2018.76.

Appreciation In August. #3. 2018.76.

My Alphabet of Appreciation FOR FOOD This Week in August 2018.

Some readers know that I have been without any teeth on top since my cancer diagnosis in May 2017 and after radical surgery in July 2017 a whole new inner /upper mouth was created and once I got home after 10 days, I needed to learn how to feed me. So much is attached to food: texture, tastes, preferences for savoury or sweet, crunchy food or smooth but I have been limited. Very much. It has been a big lesson for me in patience, creativity, adapting and making the best I can of the reason I had to do this hard work – cancer. The list here is all of the foods I have been able to eat. Often they are not in quantities I may have consumed pre-surgery as my mouth gets tired (and I get bored) with some food rolling around in my mouth for ages.

In a week or so, I will have had new top teeth added and I have no idea (yet) how this will be. This for now, is all I appreciate that I have been able to eat for the past 14 months.

A.

  • avocado – in all manner of way: by itself and added to dishes.
  • apple: I have tried many times with apple – grated but it is too hard to get it swallowed as I cannot (yet) chew.

B.

  • bread – no crusts but can eat white or wholemeal as a sandwich, or small pieces into soup
  • biscuits – dipping ones: malt, orange creams, plain biscuits. I have tried “choc covered’ ones: messy! I miss savoury biscuits as I cannot bite nor crunch
  • butter – my preferred spread and it is needed to help food like bread go down
  • beef casserole with chuck steak cooked all day – meat melts in my mouth

C.

  • cake – my homemade cupcakes with icing and those from my friend Kyla’s shop
  • coffee – double shot latte when I go out, and I keep a range of packet coffee mixes here
  • crumpets – can be cut into 4 and spread with butter and honey, I can pop the soft part in my mouth and leave crust
  • cheese – kraft blue box cheddar, tasty grated cheese and parmesan grated
  • carrot – cooked and then blended and added to bol sauce, soups
  • chicken noodle soup
  • chicken mince made into sweet and sour dishes
  • chicken cubes cooked and made into a casserole with cream of chicken soup

D.

  • dairy milk chocolate

E.

  • egg (scrambled only) with C for chutney on B for buttered T for toast

Some photos of some selections of the foods I ate in the early days. 

F.

  • fish – in the form of S for salmon in tins & smoked salmon in small pieces for lunch in summer
  • fruit – very limited. See P for pear, M for mango
  • fillet steak – cooked medium, and cut finely, with some sauce for flavour, added to 2 min noodles.

G.

  • grains – nope. They stick in places in my mouth and cannot escape.

H.

  • healthy choices. I make as many of these as I can each day knowing how much my recovery and wellness needs.
  • honey : good with plain yoghurt when I first came home from hospital last year
  • spread on crumpets

I. 

  • iodised salt is a daily condiment to aid flavour since I think my taste buds are slightly changed
  • ice-cream. Not a huge fan but it soothes my mouth after surgery and vanilla is my go-to.

J.

  • jelly. Oh so much jelly when I first recovered after major surgery and sometimes cooling and soothing after smaller surgeries. In a little container. Sometimes with I for ice-cream.
  • jam. Adding some flavour to a toasted muffin. See M for Muffin and how this is eaten.

K.

  • kale K for kidding. I can eat NO  leafy veges or salad other than what I list elsewhere

More foods from my challenging eating days. Imagination and creativity helps me with meals.

L. 

  • lettuce in teensy tiny cut up pieces added to my taco bowl or a sandwich with vegemite and cheese

M.

  • mango – could eat cut up in a bowl using a spoon. It was a great addition to lunch in Summer.
  • minced meat. How I learned to love you and cook with you for me:
  • minced beef: spag bol, savoury mince, taco mince
  • minced chicken: as above
  • minced lamb combined with the minced beef has made the best savoury mince to date
  • minced pork: a version of san box choy – just the seasoning, and the mince and on some 2 minute noodles
  • muffin: toasted white one: I can spread jam on a buttered one, cut into quarters and eat the middle part, leaving edge
  • milk: in coffee and tea and on my breakfast every day. Before the first surgery I was not a fan of cereal and milk and now I am. See W for Weetbix.

N.

  • noodles – see above: 2 Minute Chicken Noodles added to meat dishes. I have to cut the noodles with scissors before eating so I don’t choke on a long thread!

O.

  • oranges – cut and squeezed and drinking their juice

P.

  • pasta – the spaghetti variety – cut up and sometimes tube one – but needed to be well-cut for swallowing
  • pumpkin soup – over it. So over it. Yet because it “is” a vegetable and healthy I had made and eaten this a lot.
  • potatoes –  as long as they are  mashed and buttered they went down well on top of my savoury mince.
  • pikelets: these are great with some butter and a spread. Warmed even more so.
  • peanut butter: sometimes on bread and sometimes on a toasted muffin.

 Q.

  • nothing comes to mind for Q.

R.

  • roast lamb dinner. Ok. Three times my dear husband cooked this and it was delightful, drowned in gravy and with burnt baked pumpkin and potatoes
  • rice. Oh how I have used rice: white: fried: and it is a staple that I can generally ‘get down’ with a meat/fish in some kind of sauce.

Meals and more meals. Dinner was easier than lunch often. 

S.

  • sweet potatoes have been good, blended with regular potato and added to meat dishes as well as soups
  • soups. I know they are good for the body and soul. I made many: chicken and veggies, ham hock and veggies and each was blended and frozen for future consumption. I have a range of packet soups on hard always. I can only eat (and have always preferred) a thinnish soup. Not thick at all.
  • sweets. I can eat some very soft sweets: this has been in recent months: milk bottles, strawberries & cream, pineapples.
  • sandwiches. I know that they are hard to get down but I do because I missed bread. So, the fillings – spreads or cheese or salmon need some butter or condiments and then I cut off all the crusts, and then the sandwich into cubes. I can now get down 8 rectangles. Before the past month or so it was 16 squares. Takes ages to eat.

T.

  • tomato condensed soup from Rosella in the can, with milk added is a comfort food from childhood and it gets a run regularly.
  • tomatoes. I long(ed) for the taste of tomatoes but their skin made eating impossible. Lately though, I have bought small vine grown ones, and I cut out the middle with seeds and juice and that goes on a taco or even a crumpet for a savoury taste
  • tacos came about when I was looking for NEW tastes. I make up the taco mince with the powder and freeze the cooked portions, making myself ‘taco in a bowl’ with added: tomato & lettuce (see above), tasty cheese, avocado, lite sour cream.
  • tea: cups of …and often with biscuits I can dunk.
  • toast…is eaten rarely but I have tried it in very small squares with some creamed corn on top and eaten with a spoon as well as with scrambled egg.

U.

  • unhealthy but delicious at times: treats that I “can” eat when I am out: bits of donut edges, some cakes with no nuts and some icing, a part of a scone with jam & cream. Chocolate: including latest I can eat: freckles.

V.

  • variety is what I try to have but it can be V for very hard some days and I just retreat to ‘old faves’.
  • very good advice from the dietitian before I left hospital in July 2017 was to aim for enjoyment AND nutrition in my meals and snacks and I do remember that often.

W.

  • water. I always have water near me and particularly when eating. I have not choked but water is a good lubrication in my mouth anyway so I have sips and swigs during my meal
  • weetbix. Who knew? Before surgeries for cancer I rarely ate cereal. For the past year it is my standard and ONLY breakfast: 2 weetbix, some sugar (oh come on, I cannot do these plain) and lite milk. And I will continue this breakfast when I have my teeth and it is a healthy one.

X.

  • of course nothing starts with X in this list but I will say taking eXtra care before attempting to eat food, and not talking as I eat (before surgery Denyse did) helps my food stay IN and then go down.

Y.

  • yellow foods: cheeses, butter, custard are dairy-based and they are part of my meals and snacks and I try to have
  • yoghurt in the fridge most weeks so when I feel like I need to be ‘virtuous’ I have some.

Z.

  • zooper doopers are always in the freezer. They are awesome post mouth surgeries but need to be cut into small, manageable pieces as I cannot suck. Seriously, not even using a straw with success. Unsure if this ability will return.

Treats have become a daily event but in limited quantities. I have remained around the same weight for the past 12 months and wish to stay that way. Increasing activity now I am very well is helping. 

 

I hope you did not get too hungry reading this!

Denyse.

Linking with Leanne for Lovin Life Linky on Thursdays here.

 

 

 

 

 

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Appreciation in August. #1. 2018.69.

Appreciation in August. #1. 2018.69.

Thanks to my readers and commenters I am continuing a more ‘on the spot’ post and perhaps adding to my stories of what I would like to share.

In line with this title: Appreciation.….Today I am thankful for:

Opportunities to share my story about my head and neck cancer diagnosis and what has followed since 17 May 2017

  • My blog has, of course, been the main way of sharing since then
  • This year a number of organisations have taken note of my blog’s purpose in keeping readers updated with my cancer treatment and progress and approached me to write a post for them or to engage a writer on my behalf.
  • Both versions occurred: Here with Chris O’Brien Lifehouse.…and Here with Beyond Five and most recently here with  Cancer Aid App
  • The connections I have made on-line in groups on Facebook, for example this one and then meeting people from a local group continue to add to my knowledge of what others are doing in managing both the cancer diagnosis and treatments along with post-cancer life
  • I was approached by one newly made friend who is also a head and  neck survivor, to write about what I do each day to both be active and busy but to be mindful in my post-cancer surgery times and into the 14th month of recovery

I understand that each and every person, with a cancer diagnosis or not, will find ways in which to live their lives in semi or full retirement.

I am only one person…who has found the transition to retirement an anxious one. I have written about it here  

However, knowing it was up to ME to make things work better for me each day, I used my instincts and skills…and some creative thoughts to determine this:

The emotional impact of cancer cannot be under-stated but I have taken steps to ensure my physical and emotional health are priorities. I do this by:

  • Getting dressed each day with purpose, having a photo taken and posted on Instagram. This keeps me connected and within a routine I enjoy. Losing weight before the cancer was diagnosed and keeping it stable while recovering meant I could celebrate with buying new clothes

From 30 Oct, I did an Outfit of the Day post…now into my 10th month!

  • Taking notice of the world outside – the natural one in particular – by driving the the local beaches and walking or just taking in the scenes with all of my senses or just looking skywards and seeing the clouds and patterns. I also post a photo with #noticenaturedaily on Instagram

The week before #4 surgery

  • Creating art or designing mandalas and colouring them and making patterns to colour and decorating cards. Whatever I make I add to Instagram with #createdaily2018
  • Completed Mandala

  • Being a sociable person and meeting up with friends when I can and even if I go out alone (which I actually enjoy too) I engage in conversation with others as much as possible. I have learned long ago not to be self-conscious of ‘no teeth’ in my upper mouth.

Coffee & Morning Tea. Can only eat 1/3 of a scone out! Messy.

  • Staying interested and informed via reading newspapers, commenting on others’ blogs and generally taking an interest in the lives of those I may have met or am still to meet via social media.

I wear this to remember I AM!

That’s my Appreciation in August for this week! But before I go: on World Head and Neck Cancer Day 2018 last Friday I felt a great need to visit here and enjoy the space, sounds and more….but to also give thanks for all the beach has helped me through so much since we moved away from Sydney in 2015.

What are you thankful or grateful for this week?

Denyse.

Joining Leanne and friends here for Lovin’ Life Linky each Thursday.

My blogging friend from Ballarat is starting a first day of the month linky called Good Grateful. I think it’s always a great plan to reflect on gratitude! In fact, I AM grateful to her for rekindling old blogging friendships recently which spurred me on to making a Blog Roll on this blog!

Thanks so much Caz! Her blog is called Room For My Soul. I wish you well and will be there for sure! 

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WHNCDay, Beyond Five, Soup For The Soul & Emma McBride MP. 2018.62.

WHNCDayBeyond Five, Soup for the Soul & Emma McBride MP. 2018.62.

Let me start with this.

I was diagnosed with a head and neck cancer in May 2017.

I had no idea that a cancer could be in my mouth.

Many posts here have charted my journey and it has been ever so helpful for me to post, learn and help others too.

What is WHNC Day?

It is World Head and Neck Cancer Day and is on 27 July each year. Last year, on this date I attended my first post-surgical appointment at Chris O’Brien Lifehouse and there was nothing anywhere to indicate it WAS WHNC Day.

This year IS different. For me, and for more people who are coming on board to spread the word which is AWARENESS.

You see, as I was ignorant of mouth cancer, many who may eventually be diagnosed with a head and neck cancer (not brain cancer, it is a different group and speciality) and sometimes too late for life-saving treatment.

I’ve been wearing a ribbon from Beyond Five for the past weeks and having my photo taken to raise awareness. The ribbons are $3 each and available from Beyond Five (address is below)

Around the world there are organisations of professionals, patients and carers gearing up for this date with meetings, a conference is being held in Melbourne where I know my surgeon, Professor Jonathan Clark is attending along with my Specialist Prosthodontist, Dr Suhas Deshpande and an event, in Australia for the very first time called Soup for The Soul.

Beyond Five 

I first heard about Beyond Five in June 2017 as I was approaching my BIG (as I still call it, because it was!) surgery when A/Professor Ardalan Ebrahimi answered my long email very helpfully and suggested I check out Beyond Five as it was an organisation he and the Professor had started. At the stage I did glance at areas on-line but my mind was not able to take in much.

As I have moved well into recovery mode, my story was added to Beyond Five’s patient experiences in April 2018. As an educator AND blogger as well as head and neck cancer patient I became better acquainted with the organisation. Here is part of their mission.

Beyond Five is Australia’s First Head and Neck Charity supporting patients with head and neck cancer, as well as their families, carers and the healthcare professionals who care for them.

Their Story:

In 2014 a team of passionate people working within the field of head and neck cancer care had a common desire to provide access to information about head and neck cancer to people all over Australia.

Head and neck cancer is incredibly complex and diverse. It includes more than 10 different cancers that can affect a person’s:

  • mouth
  • tongue
  • salivary glands
  • skin
  • voice box

Each type comes with its own causes, symptoms, characteristics, complexities and treatment options.

There was a real need to provide comprehensive information in one place that was easy-to-access.

We spent 24 months gathering the content with the input of:

  • surgeons
  • radiation oncologists
  • medical oncologists
  • nurses
  • speech pathologists
  • dietitians
  • dentists
  • plastic surgeons
  • psychologists
  • health literacy experts
  • patients
  • carers

We included information for all of the stages of the cancer care journey from diagnosis through treatment to life after cancer. This means that patients and carers can easily find the information they need at the right time.

Beyond Five launched in September 2016.

(side note: my diagnosis date, May 2017)

Why Beyond Five?

When we talk of curing cancer, we talk in terms of  five-year survival. However, in patients with head and neck cancer the effects of the cancer and their treatment stay with the patient forever. These effects may be seen as scars on the face that cannot be hidden by clothing or may be difficulties with speech and swallowing.

The name ‘Beyond Five’ refers to the long-term need of patients which they often need more beyond five years after diagnosis. Find Beyond Five here: 

Soup For The Soul.

The sotry above indicates that Beyond Five is a charity that is new to the scene to help patients with cancer. In fact, this year is only their 2nd year in full operation. So, the FIRST every fund-raiser is happening and it is called Soup For The Soul.

Why that name? It IS winter, so it is a great idea to have some soup with friends and ask for a donation towards Beyond Five and their messages needing to get out to more. Another, and even more important reason is the symbol of what soup means for people with head and neck cancer. It is often the life-line food of nourishment and care. I had a lot of soup last winter and more this winter even though I can get some less liquidy foods down now.

For the week 20 July to 27 July (WHNC Day) there are events and meals and gatherings planned around Australia. I am off to one at Gosford on 24 July with a head and neck support group. I am hosting a “virtual” event for my blogging, facebook and other friends and I have opened a fund-raising page here.

Please donate what you can afford. I suggest $5 as that’s a bowl or a cup of soup!

Here is the link to my page, where the donations are sent directly to Beyond Five after the organisation looking after the funds takes a certain amount for their costs. This varies according to the amount donated.

Emma McBride M.P.

Emma is our local Federal Member and I wrote to her asking if she would accept a fund-raising ribbon from Beyond Five from me. A very busy lady as you can imagine, I was surprised and delighted to receive a call from her office in Canberra to say Emma wanted to come to our place, if that was convenient, to find out more and to accept the ribbon. So on Monday 9 July we did have a very pleasant chat and took some photos which went on social media and I am told there may be something happening on 27 July to raise some awareness for head and neck cancer and some funds via Soup For the Soul. I am very grateful!

I know there was a lot to read and get through today but this post has been getting ready to be published in advance of World Head And Neck Cancer Day and I wanted to cover all the information.

Thank you for reading…and I hope, commenting!

Denyse.

Joining with Kylie on Tuesdays here

Joining with Sue and Leanne here on Wednesdays.

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Life Lessons. #1.2018.52.

Life Lessons. #1. 2018.52.

This may be a theme for one or more posts. Let’s see where the Life Lessons journey takes us!

The catalyst for this post was something that happened to me a few weeks ago. The story of that was this:

I have been a long-time sufferer (and yes, that IS what it is…suffering!) of Irritable Bowel Syndrome (diarrhoea mostly) for years. It became quite a debilitating condition for me, restricting work-related tasks and social events for some of 2014 and into the years following our move from Sydney to the Central Coast in 2015. I railed against it, I did courses to help me, I took meds, I had tests and in the end, I guess I had to admit it was MIND-GUT connected and my own stressors did seem to be behind it all. This actually did not help me, in fact I probably became more determined to beat it. Not sure how, as will-power had not worked.

So, my now GP first gave me some meds which helped and through the awful times of post cancer surgeries and other stressors in 2017 I know that my gut reacted and no immodium in the world could work against a gut which had not been ‘fed’ for ages. I learned that sometimes the reaction in my gut was normal and over time I accepted that. Kind of. I also made sure that any future anti-biotics were of the type my gut did not react to. Fingers crossed, that has worked so far.

Life Lesson.

Out of the so called blue on the recent long weekend, I had an episode of IBS. I could not ‘think’ of a reason why. In fact, that made me even more cranky with ‘it’. I got sad and had to stay home…close to the ‘loo because of it. Eventually, after immodium it did settle and I was able to drive to Westmead 2 days later to have a much-needed appointment with my prosthodontist.

In the meantime, I had to admit a truth to myself, and herein lieth the Life Lesson.

My week ahead, on the weekend I got an episode of IBS, was actually filled with a couple of items relating to my health that were NOT cancer- recovery related. I had decided two weeks ago that it was TIME I got myself together and did some regular testing that comes ‘at our age’  and my GP agreed. I did not know how much the anticipation of this and some other things I had planned would impact upon me emotionally until:

MY GUT TOLD ME WHAT I DID NOT PAY ATTENTION TO.

You see, I am a bit of an over-achiever…and my GP says I am ‘goal driven’ and I have to agree so I made a ‘rule’ that by now, a year post-cancer diagnosis, that I needed to be back in tune with normal activities. 

I.B.S. told me that I was not ready and in fact, reminded me brilliantly once I accepted it that I had made a promise to work on one thing at a time and that was to continue to recover from cancer.

Yep. I needed that and with  a chat to my GP, after my husband totally agreeing to what this life lesson had told me, I accepted it, cancelled the other things….and guess what, life settled again for me ….and I have learned my lesson.

I have photo on the left as my locked phone screen saver to remind me of my lesson!

What Others Say.

I asked for any Life Lessons via my social media and here are some responses.

Run your own race. It’s a cliche but it’s so important to know yourself, then do what you want to do and not to be swayed by others. The opinions of others are given way too much headspace. Make your own opinion the loudest. When I asked for any background to this conclusion here was the response: Life! Look around – who is happier? The person running after other people’s approval or the person who approves of themselves. “A.H”

Even on the darkest days and the most difficult of times you can always find something to be grateful for. It can be tiny, but there is always something. “D.C.”

Listen to your gut instinct. Other people may have opinions on what you should do within your life or your children’s but your gut instinct actually knows. Listen to it don’t ignore it just because someone else thinks they know best. Gut instinct is usually 100% right. “LofC”

Thank you to those people.

Last week Natalie from BeKind2You.com wrote a timely post which she has been happy for me to share. Thank you!

What Life Lesson(s) have you been taught?

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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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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