Monday 24th June 2019

Thank You To Me. 24/51. #LifeThisWeek. 68/2019.

Thank You To Me. 24/51. #LifeThisWeek. 68/2019.

I saw this as a blog post on a U.S. Blogger’s page via a link-up and at the time of writing, I cannot remember ‘who’ to give credit. I am hoping one of my regular readers who links up may remember what I cannot.

Thank You To Me.

The A-Z of it!

A. Accepting most days what I find I can do and getting over what I can no longer.

B. Blogging. I am so appreciative that I took the opportunity to start a blog back in 2010 because over the years it has continued as a source of care, information and connection.

C. Cancer is not something anyone ever wants but I am, in so many ways thanking myself for the ways in which I have overcome challenges (and grown) associated with a serious head and neck cancer diagnosed only 2 years and one month ago.

D. Determination is generally a good quality and I am thankful at times that I can, with some thinking, pull back from something I am determined to do if it is not a great fit but I also LOVE that I am determined and get on with life as best I can.

E. Excited me is pretty cool and I know my energy levels are high when I am excited. I am so pleased that I can get excited about the little things in life as well as the more major events.

F. Family is so important to me and I am so thankful we got to raise two children who then went on to have their own families. Learning to step back from direct involvement in their now family-life has been hard but I am so glad I was guided by me (and my husband) to do so. Unlike my years of obligation to my direct family and how I am now independent is a very big deal for my….

G. Growth. In the past 5 years, I want to thank me for ALL I have had to learn through tears, stress, anxiety, IBS and cancer….as well as a close relationship with my…

H. Husband who, now it’s just us, is a fantastic partner, someone to laugh with, awesome hugger and downright good company and I love him very much.

I. I am interested in people and I hope use my intelligence wisely and with integrity.

J. Joking around and having fun is one way of relieving stress and reading out a joke without laughing can be very difficult.

K. Kilometres I travel safely in my wonderful car make me glad for my long-held driver’s…

L. Licence and that I am proud to say I have held it for 52 years!

M. Marriage and money. Actually marriage is, for us, better than money. We both think (despite little disagreements) that we did win the lottery in marriage and that is better than all the money in the world. 49 years since we met this October!

N. Newspapers and me. I grew up with this and I am always glad to find a newspaper to read. I thank those who still publish the ones you hold with both hands as you read. Free local paper to the Australian-wide newspapers, they are all great.

O. Optimism. Oh, I know I am not naturally an optimist as I follow the de-fault of…

P. Pessimism but if it’s taught me one thing, it is that I can be wary but I can also be brave!

Q. Questions are something I ask a lot. I ask to learn, and I ask to find out and I ask, I confess, to find out a bit of goss. Not much. But sometimes.

R. Retirement is a funny strange  interesting time. I thought I would love retirement but it seemed that I needed to re-think that and gradually lean into retirement rather than work one day, stop the next as it was in my father’s day.

S. Schools have been a loved part of my life since 1954 yet I am not a nerd. I had some ‘not nice’ things happen to me at school as do most of us, but with kind and inspirational teachers, I knew at age 11 I wanted to go into…

T. Teaching. I love little kids and watching them discover and learn. I enjoy conversations with them even before they can talk. I love learning from others too.

U. Understanding myself has taken a LONG time and I thank my mind for helping me do this in the past few years. I have read widely, studied, been to talks and I “think” as best as I can say I am…

V. Very pleased with the person I am learning to love and really enjoy being. ME!

W. What a lot of time it has taken though. I spent decades people pleasing and can still get caught up in it. It’s been in the last 2 years (with cancer) that I have learned more of the …

X. X-factor. How to gain a kind of balance between self-care and caring for others. I still do not get it right many times but I am so much more forgiving and compassionate with myself now.

Y. Youth! I have long left my youth but I try to remain youthful in my outlook and going with the times. Those times, especially via social media, may not quite match my values these days, yet I like learning the views of those who are younger. Mutual respect is a goal!

Z. Z for….the end? Sleeping. I don’t have a word for Z…oh yes I do Zest for living! I have that.

What would you ‘thank you’ for today?

Denyse.

Kell also has a Monday linkup here. Join in!

You can link up something old or new, just come on in. * Please add just ONE post each week! * Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not. * Please do stay to comment on my post as I always reply and it’s a bloggy thing to do! * Check out what others are up to by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

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My Virtual Soup for the Soul Information

Please consider making a donation you can afford here:- To help raise awareness of Head & Neck Cancer.

I had no idea about Head and Neck cancers until I was diagnosed in May 2017!

‘Soup for the Soul’ is already live and I have a Virtual Soup for the Soul page here.

More about that as we get closer to World Head and Neck Cancer Day on 27 July.

 

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I Am Grateful Series. 61-80. 66/2019.

Beyond Five.

Denyse Whelan Head and Neck Cancer Patient now Ambassador.

Consider a donation of $5 or more to my Virtual Event

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser was initiated in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

 

 

 

I Am Grateful Series. 61-80. 65/2019.

I am grateful every day.

Since learning more about myself, from before, during and after my cancer diagnosis, I know that I am better emotionally when I express gratitude.

I do this in a number of ways.

  • I will silently think of 5 or 10 things (using my fingers!) that I have been grateful for that day before I go to sleep.
  • I always express my gratitude to the person who has served me and made me my coffee. There are very few exceptions to this and watching someone’s face light up means the gratitude bounces back I guess.
  • I consider how another person’s day may be going and ask them how they are because we connect that way and I am grateful for the exchange.

A few years back I wrote a post about gratitude and how I was keeping a journal then. I am re-posting here what was, and still is, an excellent source about the value of:

GRATITUDE

The social benefits are especially significant here because, after all, gratitude is a social emotion. I see it as a relationship-strengthening emotion because it requires us to see how we’ve been supported and affirmed by other people.

Indeed, this cuts to very heart of my definition of gratitude, which has two components. First, it’s an affirmation of goodness. We affirm that there are good thing in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.

from here.

I have been going out each day since late October 2017, dressing with purpose and having a coffee.

In my small journal I might do some art or I might write to get my thoughts out.

Recently, I gave myself the challenge (I like a challenge!) of coming up with 20 things/experiences I was grateful for over 5 days, making a total of 100. Over the past weeks and one last time next week, I  share the groups of 20.

61. That I got to live at 61 Curban St from 1959 till 1970

62. That my Aunty Poppy who died at this age, showed me what unconditional love was

63. My family: close and extended cares about me

64. That I am in essence a creative person

65. Cooking is a fun way to create: when I am in the mood

66. Colours delight me

67. I love to drive and staying safe is #1 priority & I got my licence in ’67!

68. My mind – given a good challenge and coming up with the answers

69. “Enough” money for coffee and a treat most weeks

70. That I “WILL” get to 70 on 30 November 2019

71. My ability to choose foods with better health outcomes than I used to

72. My recliner chair. Ahhhhh.

73. Warmth of the heated pad on my back in said chair..Ahhhhhh

74. ACCEPTANCE is a growing concept I am getting embedded within

75. My support for others with head and neck cancer is 100%

76. Walking. That I can. I do want to walk more too.

77. Enough clothes now for every season and reason and in my size.

78. My continued connections with education

79. That my husband has his space for his work and hobbies

80. That I too have my space for the above.

How do you express gratitude?

Denyse.

Joining in with Min here for her Tuesday #ztt link up.

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Head & Neck Cancer. June Updates & WHNCDay 2019. 64/2019.

Head & Neck Cancer. June Updates & WHNCday 2019. 64/2019.

It would be remiss of me not to do an update in June….yes it would!

Having a CT ‘Surveillance’ Scan.

Following my 2 year (and every 3 month) cancer check my Professor determined it was now time for a ‘baseline CT scan’ of head, neck and chest. Ok. OK! It is a funny old thing, this cancer business until you “know” what the results are. There were no visible signs anything would be found…but…

I went. I was a bit nervous. I was finished in 20 minutes. Then I waited for a day, then another. Until I sent an email: already knowing my surgeon had a huge week but hoping he had a result. He did, I was told on the phone by his lovely practice manager: “ALL CLEAR”. Yay.

That week I also visited my dentist – the person who I convinced to remove the bridge & teeth in April 2017 where cancer was eventually found. He was able to check out all that had happened in the past 9 months and clean my remaining 8 teeth. I have an amazing team caring for me.

The First Week In June 2019.

This week marked the ten years since Professor Chris O’Brien, Head and Neck Cancer Surgeon, died from brain tumours. His legacy is so many people who trained and worked with him at R.P.A. and now at Chris O’Brien Lifehouse. His widow Gail O’Brien said recently that without Chris getting cancer he would not have understood the need for cancer patients to be cared for nor treated as well without his vision for a ‘one stop cancer care’ place. He knew that a specialist hospital -comprehensive cancer centre – would happen but he did not know of course that its obvious name would be his in the title.

On Monday 3 June I attended Lifehouse to hear the ‘stories’ of working with, knowing and loving the man called Chris O’Brien. This was a presentation about his legacy in head and neck cancer and as a patient with #hnc as its shorthand name is on twitter, I learned from those who have treated me and who paid tribute to Chris. In fact my surgeon’s final words of his talk were “there’s a little bit of Chris in everyone’s role”.

Later when I got to say hello again to Gail and to thank her for the work of Chris O’Brien, I said even at my most scared – one day after being told I had cancer – when I walked into Chris O’Brien Lifehouse I felt different. It was not a ‘hospital’ as I knew, it was full of interesting places and spaces and caring people. I felt safe and cared for. And still do. Each time I walk in, I look up at the various images of Chris and others and I am very grateful.

Being An Ambassador For Head & Neck Cancer Awareness with Beyond Five.

In June it’s time to ramp up the Head and Neck cancer awareness as we lead into the last week of July 2019 where World Head and Neck Cancer Day is marked with programs, conferences and more on 27 July 2019.

The colours for Head and Neck cancer world-wide are Maroon/Burgundy and Cream.

 

My #HNC & #B5 Lanyard with my card & Ambassador badge

Beyond Five. 

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

World Head and Neck Cancer Day: 27 July 2019.

Soup For the Soul Event at Gosford: Central Coast Cancer Centre. Tuesday 23 July 2019.

In June I will be working with the local Head and Neck Cancer Support Group at Gosford to prepare for our Soup For the Soul and Head and Neck Cancer Information and Awareness Day on Tuesday 23 July 2019 at Central Coast Cancer Centre. A year ago I went to the first occasion and met people who also had head and neck cancer and were carers and professionals too. It was the first time I had met anyone else with head and neck cancer. Now the people there have become friends of mine.

From 2018 World Head and Neck Cancer Day & Soup For the Soul at Gosford:

 

This post is to also support others around the world who will be part of the World Head and Neck Cancer Day in 2019.

Do support the charities which help with research and awareness of Head and Neck cancer.

In my case, the link in the story about my virtual Soup for the Soul event will take you directly to donate to Beyond Five’s continuing awareness updates and programs to help those affected by Head and Neck cancers.

Thanks for following my Head and Neck cancer stories. This is the link to where all of my Head and Neck cancer posts are as well as those that have been published elsewhere.

Warmest wishes

Denyse.

 

 

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New Normal For Me With Head & Neck Cancer. 43/2019.

New Normal For Me With Head & Neck Cancer. 43/2019.

It’s occurred to me that I’ve been writing posts about how it was for me BEFORE a cancer diagnosis hereand there are the series of posts about my surgeries and progress found here….but I have not done any updates of NOW.

Now as they say in cancer circles, is the new normalwhich is described here:

Finding a ‘new normal’

Many survivors* say that cancer changes them. After treatment, they may feel different, even though they look the same. With time, survivors often find a new way of living. Many call this a “˜new normal’. It may take months or years to find a “˜new normal’.

Misconceptions about treatment  ending

  • I should be celebrating.
  • I should feel well.
  • I should be the person I was before cancer.
  • I should not need support.
  • I should feel grateful.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#xc5f7pBq7VeQ7Oeq.99

Fellow Head and Neck Cancer Survivor, Julie McCrossin AM, the inaugural Beyond Five Ambassador hosts a series of podcasts here called About Cancer.

About the word: survivor. My personal choice is this one. However, it is not always looked upon well by some. I have no word to replace it for me. I personally do not like warrior nor does thriver work for me as it does for some. It’s just me. I tend to use patient maybe because I am still getting cancer checks. To each their own, right?

Now, back to MY version of New Normal.

I have really been considering this in 2019 as it ‘felt like’ and ‘looked like’ I was back to Denyse. But which version of Denyse? I am ageing too and I wonder if some of my thoughts are also linked to being in my 70th year.

When I was in pre-cancer times, I was so ‘caught up’ with managing my stress and emotional load at having moved from Sydney and all that entailed in getting used to a new normal for that situation. Suddenly, new normal meant:

  • no longer living in a house we were paying off
  • no more employment for me
  • no more regular contact and care for our grandkids
  • being a more stressed-out person than I liked
  • trying hard (so hard) to be better able to manage the life I had then: 2015-mid 2017

Then cancer entered my life.

Very suddenly I took on a new way of looking at life, and learning what was ahead.

OK. I was stressed but in some ways I knew what was coming and even though there were unknowns, I do know NOW, I have made it through

  • diagnosis,
  • 4 surgeries,
  • recovery times,
  • many prosthodontist visits and treatments,
  • adjusting to life with less ‘in my mouth’ to help me eat,
  • then getting more in my mouth to help me eat…
  • and bingo, the smile is back so…
  • back to normal, right?

OH no, so not true. For me at all.

Partly it was my belief I could be back to eating what I used to eat.

I even bought these foods after not buying anything crunchy for well over a year and they disappointed me greatly. Perhaps, for the chips, a good thing.

However, some of this is true but more is not.

I can only crunch and chew for so long.

It is almost a year since the last surgery inside my mouth to add more skin to the inside of my upper lip and around the top ‘jaw’ abutments. I got my upper prosthesis screwed in on 21 August 2018 and it has been removed only once for adjustment by the prosthodontist. I do upkeep: two routines daily, involving 4 steps using this:

In being totally honest with myself, I can say I need to remember more than anyone that I have changed because of cancer in my mouth.

Head and Neck cancer never really leaves us. This is the reason for Beyond Five where I am now an Ambassador. This site helps patients, carers, families and friends with ‘the years after cancer’s 5 year checks are up’.

Announcement of My Ambassador Role.

It’s stays as it affects our inside and outside areas of the neck, head and inside the mouth, cheeks, sinuses and down into the throat and more. In my case, it is all in the mouth. I was told pre-big surgery, no-one would know you have had cancer or surgery once this is all done, and that is true. In some ways, that is a reason why it is up to ME to manage my new ways of eating rather than expect, as I look normal, others will be able to guess what I need.

This comes home to me even as I can still struggle to eat a meal I have prepared. It takes a long time to eat and sometimes, I just divide it into 2 meals as it tires my new mouth and makes it sore.

This is what I know is my new normal.

  • I get myself up each day between 8 and 8.30 a.m. to eat a nutritious breakfast or weetbix or cereal with fruit/yoghurt and milk
  • I take time to eat as it takes time and as I am retired, I get to enjoy reading the morning paper that’s been home-delivered
  • I will do any minor household chores which are shared with my also-retired husband e.g. a load of washing is put on the line
  • I check my emails, my blog (I have a blog which posts a new post 3 days a week) and any social media
  • Time to get dressed for the day. In October 2017, following the first major surgery I had lost a lot of weight and enjoyed the fact that I needed to buy new clothes. As a previously very overweight person, this was F U N
  • However, I found this to be a new normal for me called #dresswithpurpose and I joined in #everydaystyle for around a year and what a great community of support surrounded me post-cancer. I had no top teeth but as my husband said “I smiled with my eyes”.

Dress With Purpose photos: 2017 into 2018.

  • Each day, after a photo taken by my husband, I venture out for a coffee (and now more often, a treat to eat) somewhere local or more distant. I love this part of my new normal.
  • I have my coffee, I take out my mini journal kit, and draw/write and I people watch.
  • Sometimes I browse if I am at the shops, other times I may be out in nature and enjoy that too.
  • I have my own car which helps me be independent and drive myself to all of my Sydney appointments.
  • After this it is closer to the middle of the day and I come home when I am ready and get my very crunchy lunch ready. It is a joy to crunch.
  • More reading after lunch and sometimes more work/play via the computer.
  • Some outside chores including nurturing the plants that gives me further purpose in cancer recovery
  • Then it is meal preparation or simply getting small frozen version of an earlier meal from the freezer. Batch cooking is the way I go: meat meals made with mince, lamb shanks, beef slow cooked and of course teensy cakes for treats. I love them too.

Now I know this about my new normal.

I need to appreciate this new normal and the state of health I am in. So far, almost 2 years since diagnosis, there has been no return of cancer. I have the best health professionals looking after me and I am grateful eternally for them, their skills and their care.

I will continue to learn more about myself as I both age, and get used to ‘what’s inside my mouth’. I do know that pain comes and goes. I also am reassured that my mouth continues to be healthy inside and I am caring for it well.

I do not have any mobility problems with my right leg even though the fibula was removed for my new jaw. Thanks too for the skin and flesh, right leg!

I am loved and cared for by many as I do of them. This is a very good way to live.

In my 70th year I continue to enjoy creating with art, meeting up with friends for coffee rather than a meal, travelling to other cities by car for events and entertaining our family, along with continuing my engagement with school education, and promoting more about the awareness of this rare, but not nice, cancer called Head and Neck Cancer.

My new normal is awesome.

Denyse.

This post is being shared on link ups here, on Wednesday and  here on Thursday.

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Two Years Ago: Before My Cancer Was Diagnosed. Pt 3. 35/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 3. 35/2019.

Thanks to readers who have commented on these posts.

They are, in some ways, very personal and maybe a bit indulgent but they are going a long way for me to feel better and recovering well from my version of head and neck cancer, found in my upper gums and under one lip.

The first two posts about the two years ago can be found here and here.

My last words on the previous post were these:

“take the teeth and bridge out, I HAVE to know what is underneath!”. I was a bit better-mannered than that with my request to my dentist but inside I felt these words more!

Why Did I Want The Teeth Taken Out?

For well over 6 months from late 2016 into 2017  this dentist and I worked on “what could be going on with my gums”.

This is why.

  • My upper gums were sore and red. They felt that way in part of my upper palate (roof of my mouth).
  • There was a ‘feeling’ of skin tearing up behind the covered part of the gums as I had a bridge permanently in my mouth.
  • The bridge (and a crown) had been added to the 6 front teeth spaces to add to my appearance and function as the original teeth had been heavily filled and already had been treated to the maximum by the dentist in Castle Hill in 2010-2011.
  • I went along with this procedure without question as I was promised it would be better. It was paid for by Medicare for people like me with chronic dental issues back then.
  • I admit I was ignorant of the what and how of the procedure but it seemed to be right. I trusted the dentist.
  • What did happen over and over from then until April 2017 is each new and subsequent dentist (3 in total)  told me “You are not cleaning behind the bridge properly”.
  • I did what I could. It was a very awkward and uneven space and even the dentists were challenged with their instruments.
  • “You have candida” I was often told. Yes, OK. I took so many fungalin tablets and added nilstat as a mouthwash only to find no change, and diarrheoa as a side affect. NOT something I welcomed with IBS already the ‘beast within’.

The mouth still hurt.

I had thorough cleaning at the dentist as late as March 2017.

The mouth still hurt.

I watched the gums slowly creep over the top of the front teeth.

The mouth hurt more.

But still this dentist wanted to investigate more even though he said theoretically he could take the teeth and bridge out.

I went through trying to get myself tested for nickel sensitivity – nickel is part of the bridge. I chose not to. I wanted action.

I could not eat much at all – combination of the very sore mouth and anxiety about it and good ole IBS.

So, the deal was struck. My teeth and the bridge they were on were coming out of my mouth on 6 April.

But wait….

I am too scared to both travel AND to do this! Right?

From my journal the day before:

On Wed 5 April I was nervous about the upcoming dentist trip

I did go out & do things but the “enormity” of what was ahead overwhelmed me

I broke down & just couldn’t see how I could deal with it

B was good at listening but I knew that despite the dread & worry & fear IF I didn’t go through with it it would be :

Avoiding

  • Would make it worse
  • I’d not get my mouth fixed

So I took steps to make sure I got there:

1. 1/4 Valium in arvo & then at night helped reduce the internal rumblings

2. I told myself it was a positive to be getting it done as it’s troubled me for so long I couldn’t let it go on & on

3. I needed to tell myself the outcome & process had to happen. I stopped thinking there was doubt or other choices. I needed to own this

4. I ate small because I was scared of IBS but that’s not new.

5. I knew I could take immodium if there was a reason

6. I used the hypnosis from audible in a big way

7. I had B taking me & he agreed to do it anything to make it work.

The day came. It was just after lunch. Not that I ate any! Yes, my dear husband did drive me and yes, I took medication as advised. I was warmly greeted by the team who really understood this was hard for me. I had my iphone and  earbuds and a hypnosis session ready. It started with LOTS of needles and reassurance all the way. I could give a signal to stop (I did only need that to tell them it was still hurting too much). I could also ask for a break to go to the loo. I did that once. By the time I decided I had enough…it was done. I was surprised. My husband had sat in the room reading as I was treated and it was nice to know he was there.

I knew there would be a denture put in – and whilst that did not hurt then  it did later. I had the model made the week before. So, then I was shown the teeth and bridge. I took a photo but not the teeth with me. The dentist’s opinion at the time was that everything looked OK gum and bone wise and I would see him the following week. I just needed to get back in the car and home. It was done! Over.

Afterwards I recorded this:

 Mouth sore & swollen

 Ice packs on my mouth

Taking medication – neurofen & anti-biotic

 Still got some bleeding (6 hours later)

Headache & tired

 Ate squashed pear, yoghurt & grated cheese & PButter

Very proud of myself and was told by B I was great.

Now if only IBS would bugger off!

Back to dentist next week to check it out & adjust the partial denture.

It

Is

Over.

Then I had about a week of pretty intense pain manipulating the partial denture in and out of the top gums. The gums were sore. I just expected that I guess. The following week, I re-visited the dentist alone with more self-confidence albeit in pain, where he adjusted the denture, told me what to look out for and I would see him in around 4-5 weeks.

And so, within that period of waiting, things did not progress as well as either of us hoped.

There will be a fourth part to this lead up to the Two Years Since My Cancer Diagnosis.

I hope that sharing my story is somewhat helpful to you. However, I must add, as my Head and Neck Surgeon told me:

“Denyse your cancer is rare and you getting it with no risk factors (smoking, drinking) is even rarer”

With Prof Clark – My Head and Neck Surgeon at Chris O’Brien Lifehouse.

Thanks for being part of the journey in these posts I am writing…for good reason and for information shared as I so often need to do since my Head and Neck cancer diagnosis.

Denyse.

Joining with Sue and Leanne here for Wednesday’s Midlife Share The Love linky,

With Leanne on Thursday for Lovin Life link up here AND with Alicia on Fridays for Open Slather here.

Thank you all for your link ups.

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Reality Bites. Part One. 2017.96.

Reality Bites.Part One. 2017.96.

Today, 6 August 2017, as I write, it is exactly ONE month since my cancer surgery on 6 July 2017.

I am calling this post ‘Reality Bites’ as the consequences of the diagnosis of cancer, the pre-op visits and treatments and then the ultimate ‘reality’…. the complex and major surgery in my mouth and on my right leg have truly ‘bitten’.

I am writing it out so I can honestly tell you, my readers, that I am NOT doing so well in that emotional sphere at the moment.

This is despite my previous posts where I appeared to be going so well. I was/am in a physical sense.

Readers who want to read more about what this surgery was about can go here:

my diagnosis….my updatesmy grateful post #1my grateful post #2.

Reality has bitten in the form of a heightened emotional response (and IBS frequency) to what has happened to me…my feelings are catching up with what I have been through – from date of diagnosis 17.5.17 till now. (less than 3 months!)

Here is how it is for me NOW as I recall memories that are not great and are affecting me somewhat even though I know things will get better over time.

  • Wow, it’s been one month since the huge operation which I  knew was going to (hopefully) take all of the cancer out of my mouth and leave me with a reconstructed mouth using tissue and bone from my right leg.
  • I recall my feelings of being totally overwhelmed when the surgeons began to describe how they would ‘fix’ this cancer in my mouth only one day after I found out I HAVE cancer.
  • I got through the drive home after that with my hub on my least favourite road (M1) as I tried to wrestle the past 24-48 hours into some sort of sense for me. It was surreal.
  • At home I ‘tried’ to go on with ‘normal life’ but that is impossible when the word C A N C E R shone like a red light in my mind constantly.

“last smiles” were/are treasured but under those false teeth it’s cancer

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.
  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?
  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.
  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.
  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.
  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.
  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 
  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 
  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 
  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

I’ve written two posts (see above) which described how things went for me in hospital so I will not outline any more here today.

The next post will outline what happened emotionally in hospital and then my homecoming. I have chosen to write about it all from an emotional perspective as life as a cancer patient post-surgery is affecting me and writing it out is to help me.

At home in my first weeks.

Have you had cancer?

Do you have an experience of having a life-changing event for you where things caught up with you later on?

I appreciate your comments and support. I am not looking to ‘get advice’ as I think that in recognising what is happening to me and letting it happen is probably the healthiest way I know how.

Thank you for your support!

Denyse.

Joining with Kylie and friends here for I Blog On Tuesdays and here with Leanne and friends on Thursday for Lovin’ Life linky.

 

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I Am Grateful Today. Cancer Surgery#1 Part One. 2017.91.

I Am Grateful Today. Cancer Surgery#1. Part One. 2017.91.

Hello again!
Today I am listing many reasons I am grateful and am delighted to be back blogging and linking up with dear friends here with Leanne for Lovin’ Life Linky!

Day Before Surgery

Oh, and in case you did not know… I have returned home after my major cancer surgery which removed the inside top of my mouth, gums and teeth (ha! there were only 3 left…and bummer…no tooth fairy coin left either!). When I was in hospital I had PLENTY of thinking and reflecting time so a post about gratitude seems to fit my return to Lovin’ Life today!

This post is live two weeks after my 11 hour surgery on Thursday 6 July. The selected  photos and words are just a part of my grateful list.

I am doing my best to have them sequentially …enjoy!

Wednesday 5 July. Pre-Admission Day.

It was a well-planned departure (I am so that anyway) but I did have a tiny sense of ‘what if I don’t come back’ and sensibly did quite the paperwork tidy-up, prepared official documents so husband and daughter knew where they were, and left my bedroom and art room clean and tidy. The trip to Sydney (by now I had done 3 since diagnosis) so I am grateful that I built up my confidence through challenging my beliefs based on fear of driving on the M1 and ‘getting caught short’.

We arrived in plenty of time at Chris O’Brien Lifehouse (pictured)  for a myriad of health checks (all fine and dandy!) at pre-admission and handed over my life in forms…about 10 pages. There was no money to pay as our Teachers Health covered every.single.item*. Always very grateful we were both in it as young teachers then continued as a family always with top cover. The amount paid by them was in excess of  $21K.*not all doctors’ fees but that is ok.

We had booked overnight accommodation (cheap and cheerful as recommended by the hospital) as it was within 10 mins walking distance of Lifehouse. We were not impressed by the spartan set up however kindly the people were who supplied the accommodation so after our LAST night together for a while, B decided to bunk in with the grandkids and our daughter who live an hour away from Lifehouse. In retrospect I was incredibly grateful he did because as he said ‘it was great to see loving family faces!’.

Thursday 6 July. Day of Surgery.

I have no pictures! Fancy that! But I was grateful for a laugh when I got my phone back from B the next day and there was over 3 hours video of the inside of the phone cover which must have started when I handed it to him in Surgical area at 6.30 a.m.

Friday 7 July – Sunday 9 July. Intensive Care Unit.

After 11 hours of surgery I remember one fact about waking in what possibly was recovery but might have been ICU and it was nighttime. I asked ‘no tracheostomy?’ Of course, my brain tells me now I would not have been able to ask the question if I had, but I was intensely grateful that my surgery did not require this as I had been told it was possible.

In intensive care I was grateful each room was private and I could shut out sounds and light as I mostly needed to rest my eyes, not sleep. I liked that I could talk (a bit) to whoever came to check my obs. Loads of obs checks, especially my ‘mouth flap’. This was checked via a doppler ( a mini ultra-sound scanner) and each time I heard the reassuring beats I did thumbs up as I was incredibly grateful it was alive in me. The catheter came out on the second day and it was good to go to the loo (with help of course, as my leg was in a back slab). I am grateful I stopped caring about modesty. Let’s just get better is my motto!

By Sunday I was stir-crazy and when I heard they were waiting for a room to be ready on the ward I sure was pleased. It took a bit of time to do the transfer but I was grateful to say ‘bye bye’ and ‘thank you’ to ICU.

The Rest of My Stay Until Discharge on Saturday 15 July.

To be continued next Tuesday week where I will link up on I Blog on Tuesdays and the next Thursday when I will link up here again too.

I decided to do it this way as I am tiring and I have a lot to say! Who knew? Ok. I did.

Denyse.

Next Monday I re-start my #lifethisweek Link Up: Here are the prompts: They are also on the Home Page.

Mon 24 July: 28/52. Can’t Live Without.

Mon 31 July: 29/52. Winter.

Mon 7 Aug: 30/52. Birth Order.

Mon 14 Aug: 31/52. Ideal Meal.

Mon 21 Aug: 32/52. Selfie Time.

Mon 28 Aug 33/52. Mindfulness.

Mon 4 Sept 34/52. First Car/Bike.

Mon 11 Sept 35/52. Beach or Bush.

Mon 18 Sept 36/52. Taking Stock.

 

 

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What’s in a word? Cancer. 2017.82.

What’s in a word? Cancer. 2017.82.

Since I heard the word, cancer, to describe what had been found via pathology from the biopsied tissue from my gums, I have seen it and heard it everywhere. However, I think, it’s like when I  first become pregnant, I saw other pregnant women everywhere.

It’s more noticeable because it affects ME. So, whilst there is still no word (ha!) on the exact  date for my cancer surgery, I thought it timely to write a post.

I have been incredibly well-supported already by those in my friendship realm here in the blogging world and elsewhere.

Each has been from someone who has had cancer, knows someone with cancer, and is currently being treated for cancer.

I read recently  that 1 in 2 of us will have cancer. Wow!

My family of course have expressed their concern and care for me. I have been visited by almost all of the immediate family and that has been lovely. What I have found too is the outstretching of hands (figuratively) of so many is helpful and reassuring which is why I blog about it.

Here’s what I wanted to share briefly:

I had been on a roller-coaster of emotions ANYWAY before I was diagnosed with cancer, so to add cancer to the mix has raised those anxious thoughts of mine to greater levels. But, I am thankful that I was already doing much to help myself with anxiety and adjusting to our new way of life. Meditation, being more mindful, walking, being outdoors, blogging, enjoying some Netflix with my husband, going to the beach, taking photos, supportive health professionals  and generally engaging on social media are already integrated into my life. So, they have become tools for managing my thoughts about cancer too. 

Thank you to the many people who have sent me messages, cards and let me know that I am in their prayers, thoughts and hearts.

“We are all just walking each other home” Ram Dass.

It is very humbling to have such a lovely group of you with me.

Most of all, I thank my husband who is already my finest supporter and rock! He will be with me as much as he can within the first days in hospital and I know, not matter what state of grogginess I may be in, he will be within arms reach for me. That IS love. I am so lucky.

Thank you everyone. I hope that if the word ‘cancer’ is part of your world by association or for you that you too will be cared for and about like I have been. I am blessed. This image is one I am using when I need to take myself to a more enjoyable mindful place. Enjoy!

I am grateful every day.

UPDATED: About my present state of health. 

When I wrote this post I thought I was managing myself quite well. Since then, I have had some pretty horrid days (and nights) where I have become fearful, panicked, and so vulnerable I wanted to go into a corner and hide and never come out.

I am shit-scared right now.

I am worried about losing what I valued: my mouth where I speak, eat, share my emotions and smile. It has been days of crying uncontrollably, being held until I calm down (thank you dear B) and taking some valium (which I don’t really want to) and letting out the fears  in words between the sobs. 

I fear: the loss of ability to use my mouth for at least 7-10 days, have a naso-gastric feeding tube down my throat for those days, having the skin/flesh/bone from my right leg inside my mouth after 3/4 of my upper jaw/palate as been removed. Dealing with the not being in control.

I am, as I write, unable to really express what it means to be facing this loss of control of my body. I will be in ICU to start and may even have a tracheostomy to start if the mouth is too swollen. This is very scary to me, and I am admitting it now.

For me to admit how vulnerable I feel right now is to say “I cannot do this without help”. My husband reassures me he will be there as much as possible, and given how I will look and be, he will be my only visitor until I give any indication I can see others. I am facing the unknown and that as we know is the scariest place to be. I will be losing my smile….for more than a while. Possible 3-4 months until my upper jaw recovers.

Have you faced major surgery of any kind for cancer and other reasons?

How did you deal with it?

I am so wanting some answers that help me know – in the pre-surgery phase that I am not alone in my fears. 

Thank you for reading this far! I appreciate that very much.

Denyse.

Joining Kylie Purtell here for I Blog On Tuesdays link up.

Linking here on Thursday with Leanne and friends for Lovin’ Life.

 

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