Saturday 17th November 2018

November Notes #2. 2018.116.

November Notes #2. 2018.116.

This month, 5 years ago, a unique and amazing event occurred.

I did not know how much this event would affect me 18 months ago.

Chris O’Brien Lifehouse: Comprehensive Cancer Hospital opened in November 2013.

I am incredibly grateful for the vision of both the late Professor Chris O’Brien OAM and his lovely wife Gail, AO.

Chris, who was to die from brain cancer in 2009 before the hospital started, had a vision based on his experience as a Head and Neck surgeon and then a patient with cancer. That there needed to be a place like a ‘one stop shop’ for cancer patients and families as there was so much to manage when someone is diagnosed with cancer without more added to the stress such as visiting as number of different places for treatment.

For Gail, on receipt of her AO said however, the award is a reflection of the community of which she feels lucky to be a part. “I could not be more proud of our independent, benevolent hospital and the care we give our patients,” she says.

Her words are a tremendous reminder to all of us of the importance of Chris O’Brien’s mission. With this award we are encouraged to strive for the best at all times, and to continue to turn your support into a positive force in the fight against cancer.

A chance meeting here I had longed for. I met the late Prof Chris O’Brien, Gail.

Even though I cannot be there for this week of Open Days and Celebration, I am there in spirit.

From my first, scared and very tense visit of over 2.5 hours on Thursday 18 May 2017, through to major surgery on 6 July 2017 and my excellent recovery in ICU and on the wards, through to check-ups and tests and then for more day surgeries on 15 November 2017, 6 February 2018 and 16 May 2018 it is always a rich and inclusive experience to be at Lifehouse. Of course, I have been back for follow-ups and to chat with people I would now call friends. Who knew that would be how I would interact with a hospital and having cancer! Not I!

This one session, held on Monday 5 November when I have to be at Westmead  to see the prosthodontist, features my Head and Neck Surgeon, Professor Jonathan Clark who was trained by Professor Chris O’Brien. How fortunate am I!

Jonathan said ‘he was stoked’ about how my teeth/mouth worked out.

Eventbrite for Organizers's photo.

NOV5

Innovation and technology in cancer surgery

Public

More here about the week of celebration, innovation, care and sharing from Chris O’Brien Lifehouse.
My little collage and tribute to wish Chris O’Brien Lifehouse congratulations on 5 years of helping patients like me!

Do you know of the great work done by the late Professor Chris O’Brien? He became, as his family remembers, the unexpected ‘star’ of the long-running T.V. documentary called R.P.A. That’s short for Royal Prince Alfred – the hospital opposite Chris O’Brien Lifehouse.

Thank you to you all at Lifehouse!

Denyse.

Joining with Leanne who also  knows a lot about the work at Chris O’Brien Lifehouse, here for Lovin Life linky.

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Look Good Feel Better Workshop. 2018.115.

Look Good Feel Better Workshop. 2018.105.

Look Good Feel Better workshops are open to anyone undergoing treatment for any sort of cancer.

https://lgfb.org.au/workshop/

A few weeks ago I had the opportunity to attend a Look Good Feel Better Workshop in my local area.

It was held in a private room within a community church. It is free and available, on application, to any person with cancer. It started at 10 and ran till 12.30. There was no break nor any refreshments other than water.

There were three women from “Look Good Feel Better” waiting for me and the other people who arrived. Each of us chatted briefly and then we sat around a well-organised table with individual places, products, a bag and mirror. There was help from the ladies as we were given tips on how to make up our faces and things were done in a clean and hygenic manner.

The co-ordinator, Cindy, pictured here with me, ran the event aided by a volunteer and her volunteer co-ordinator Kate.

Cindy, the Co-ordinator with Me…after-shot!

Interested in Being a Volunteer? 

The Look Good Feel Better program relies heavily on our team of 1,300 dedicated and passionate individuals who volunteer their time, knowledge and expertise to help deliver our workshops across Australia.

We ask that our volunteers are over 18 years of age and can commit to a minimum of FOUR workshops per calendar year (where available in your region) to ensure we have sufficient volunteer support for our workshops to run.

The first section (around an hour) was very helpful and I did pick up some tips for my poor ravaged skin on this face that has undergone four surgeries! We learned about the sun protection levels and the fact that those undergoing treatments may be even more damaged by the sun so to take good care. We found out about facial tricks – to hide or minimize ‘flaws’ and I learned more about using the concealing ‘green’ stick on red places.

I seemed to be the only one there who was not affected by hair loss or potential hair loss but not everyone shared what their cancer was so I am surmising.

The second section was not relevant to me and I did think about leaving before it started but to support the lady next to me, I stayed. This section was about losing hair, head coverings, tricks and tips and wigs. I am glad I was there for this lady and I do hope now she has started her chemo she is a little more prepared.

 

Look Good Feel Better is a national free, non-medical, brand-neutral program dedicated to helping you face your cancer with confidence. 

While most changes in your appearance are temporary, we believe that taking control of your appearance is one of the simplest and most effective ways to boost your self-esteem and confidence while going through treatment.

Can’t get to a workshop?

Home-delivered Confidence-Kits are a supplementary service developed to assist cancer patients who are unable to attend a Look Good Feel Better workshop for health, travel or personal reasons.

I came away feeling a bit flat which may have been because “my cancer” is not well-known. The second session in particular geared to those, who through cancer treatments have had hair loss  including eye lashes and eyebrows. I fully understand that more women need this kind of help and support through treatment as do others who have chemo.

There was little to no interest in knowing more or even hearing about my head and neck cancer, but those of us head and neck patients find this is a general response. Now you know why I try to educate and help others as I was ignorant too about head and neck cancers till my diagnosis!!

I would however like to thank those who shared their morning with me, particularly the fellow cancer patients. Some were incredibly kind and generous with their tips to others, like the lady next to me who was scared pre-chemo, and one lady had us all ‘fooled’ when her beautiful head of hair proved to be a wig.

Thanks to those who volunteer with the organisation, Look Good Feel Better, and those who work hard to see it happens. From the time I got my initial email, to the time of attendance the communication was excellent. In fact, I was able to change the day of mine to “when I would have my teeth” and they were happy to do that.

We all got the new products that were on our placemat at our table and each is now in my bathroom and I am using the eye brown pencil, the blusher, the big brush, the mineral foundation and the tinted moisturiser.

Have you attended a workshop?

Do you know someone who might benefit?

Put them in touch via the website and they will be looked after.

Denyse.

Joining with Kylie for I Blog On Tuesdays here and with Sue & Leanne here for Midlife Share The Love on Wednesdays.

 

 

 

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November Notes.#1. 2018.113.

November Notes.#1. 2018.113.

November notes are related to health and mindfulness and in November in Australia we see the jacarandas in bloom. This reminds us of….for some exams are just around the corner, it’s almost the end of the academic year and it’s closer to Christmas than we think.

A year ago, on 30 October to be exact, I began a practice that was going to be for 32 days in length. It was to ‘dare to post’ a photo of myself every day from then until I turned 68 on 30 November 2017.

As regular readers know 2017 brought a significant and blindsiding diagnosis of cancer: head and neck cancer located in my upper gums and under the top lip. If that doesn’t give anyone a shake-up then I don’t know what might.

I have always enjoyed sharing my life via photos on social media, instagram for preference, and as someone who had also, in that ‘life-altering year’, lost even more weight, new clothes and an appreciation of a more physically comfortable body gave me an idea. It was not my original idea as others before me were already snapping themselves with hashtags:

#everydaystyle

#dresswithpurpose

#outfitoftheday

#over60sstyle

and more….and I thought, maybe I could challenge myself to do this. I decided a little matter of not being able to open my mouth to smile would not stop me, so off I went. I wrote about it here in 2017.

Until I was 68. Then it changed. Again. I liked doing this so much I continued. Here are some of the shots back then.

In 2017 I used collages. It was a good chance for me to show the world how my ‘mouth’ was going – post July and then November 2017 ops

 

And, my husband made me smile (most times) for the pics. Finding some backgrounds was interesting.

My ‘telling it as it is” shot. I was in pain in my face from surgery, but we went to the beach to distract me…I also went bare-legged (right leg) to show my surgical scars.

Once I established this great routine, I added another, once I could be sure I could do it. Out for a coffee. Every day.

 

And as the weather warmed, it was clear I needed to shop for new items.

 

Once I was less fatigued, I found shopping for some new clothes (only ever ones on special) was a big distraction from cancer and the surgeries’ effects.

Another significant day: We attended our granddaughter’s 21st in Sydney where I saw family who had not seen me since surgeries and I got another dress for the occasion.

Deciding to go on after my birthday! Christmas Day shot with 3 of our grandkids.

And then into 2018.

 

I like a challenge, so a self-determined one, was that every day the clothes would be different. I kept as accurate a record as I could and it was also, ahem, great getting my shopping gene back. My mum liked to shop for clothes and shoes. As I can not find pretty shoes because of awful feet, I went for the clothes. The ladies in the local Rockmans, Millers and Suzanne Grae got to know me well and bargains were had.

It was a great thing for my mental health as there were days when, like all of us, I just would think, “I cannot be bothered”. They were the days, I recognised were the ones when I need to be bothered the most. So, as someone who keeps to her word, I went on.

I believe that this helped my recovery and in a future post or two in November Notes, I will share more.

  • Do you take part in any daily Instagram challenges?
  • Would you post photos of yourself on social media?
  • If the answer is yes, yay for you! If no, what is stopping you?
  • Can you consider that this is something that may be good for your health too?

Enough from me!

Denyse.

Joining with Leanne here for Lovin Life link up on Thursdays.

 

 

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Students Need School Libraries. 2018.109.

Students Need School Libraries. 2018.109.

I can’t think that anyone might disagree with the statement:

Students Need School Libraries.

When I mentioned this campaign to assist more of the community to know WHY there even needs to be a campaign, these followers commented on my instagram account:

I loved our library at primary school. Our librarian was rad.

In grade 6, my classroom was opposite the library, best spot in the school!

I was lucky enough to experience amazing school libraries as a kid; they were my havens from bullying and re-charge stations for us introverts.

My kids’ school library is unstaffed and they only go in there once a week.

Looking at high schools recently was an eye-opener too – one school had a traditional library, one a ‘decentralised’ library, one no library at all. They are so undervalued.

Yet, this is now a growing campaign Australia-wide, all areas of schooling, to ensure that schools retain not only libraries for their students but have trained teachers in charge AND…the biggest of all, value the centre, the Library as the entry point of learning and loving all books and reading.

In the late 1980s when NSW Public School K-6 teachers were allocated 2 hours release from face to face teaching…”the allowance of one hour” was to be taken by the teacher-librarian.

It may not have included any lessons about libraries nor having books read. Or borrowing.

I was a principal who had to similarly act in the early years of 2000s and I know that conflicted with my professional and personal views on the value of a school library to students.

The thing about education run by politicians and some bureaucrats is that they “look for how to save money” and…”oh, well, school libraries aren’t that important are they?”

YES. THEY. ARE.

So, my story.

I have always loved reading. See my post here. I also knew I wanted to be a K-6 teacher thanks to the encouragement of my year 5 teacher who went on to become the teacher-librarian. For a few of my teen years, I toyed with the idea of being a librarian instead of teaching, but glad I chose the role I did. Mind you, when I was post-principal years, I got to do some relief teacher-librarian work in a modern school and loved it. Especially reading to the kids. Of all ages!

My daughter’s story.

She began reading at around 3-4 years of age. We did not ‘teach’ her as such but she was immersed in language – written and spoken, along with books once she was born. A somewhat reluctant entry to teaching, she found her feet with classes in Primary School (3-6) and loved her involvement in sporting programs. Over the years, her teacher-life shifted gears when she was offered the chance to be a teacher-librarian for a couple of years at her then school and she relished it. I am not sure the weekends spent at school were always relished but thanks to that success, another opportunity came her way.

A big one. To start a new school’s library. She applied for this and was accepted. Into a brand new (then in 2015) school in Sydney’s north west. She got to buy the first books, set up the physical library and start all the ‘back end’ stuff that takes forever…accessioning, covering and more, whilst getting ready to welcome the new students to the new school. I visited her back then, and it was a joy to see her in her element and some of “my old resources and furniture” in a place where it belonged. I know the school library has changed significantly since then, but considering this only happened within 2 months of school opening (for the first intake of students!) I think it is awesome. No Mum bias.

But, to retain the position, this single mum of 4, had to comply with another requirement. THIS is the reason why it is so important to have properly trained and experienced teacher-librarians. She needed to have a Masters of Education (Teacher/Librarianship) within two years. That, my friends, is a big ask, with some leave from the role to guide her family through some of life’s transitions and some health hurdles to overcome, with an extension granted, she DID achieve this….and she is here, last December, at her graduation. (proud mum moment: she is wearing the same M.Ed cloak I wore for my graduation at Charles Sturt University some decades before!)

From the site: Students Need School Libraries.

Here is what the campaign outlines as its purpose via sample newsletters to parents which is why I am using it here.

 Students Need School Libraries

  • Did you know… that your school library supports your child to engage with a diverse range of books to extend their imagination and develop a lifelong love of reading?
  • Did you know… that school libraries are responsive and collaborative learning spaces that provide students with access to a wide range of resources that are relevant and appropriate to their learning needs?
  • Did you know… that school libraries support your child to reach their potential by teaching them how to become capable researchers and to navigate the world of online information and fake news?
  • Did you know… that teacher librarians hold specialised qualifications as both a teacher and a librarian? Quality library staff are trained to support keen and reluctant, successful and struggling learners.

Students need school libraries. If you are keen to ensure that EVERY child in Australia has access to a quality school library, check out the information available at https://studentsneedschoollibraries.org.au

 

 

Some familiar faces put their words in to the campaign.

What can you, my readers, do?

Support the campaign via your social media options.

https://www.facebook.com/StudentsNeedSchoolLibraries/

https://twitter.com/NeedSchoolLibs

https://www.instagram.com/studentsneedschoollibraries/

Use the hashtag: #studentsneedschoollibraries

Re-tweet (and re-tweet with comment when you see the hashtag on twitter

On Instagram, make your messages of  support too, because they will attract more people to learn of the campaign.

But above all, if you can, do all within your areas of influence to ensure that:

Students Have The Access to School Libraries along with Trained Teaching Personnel.

Thank you, from one very passionate educator, mother, grandmother…that’s me!

Denyse.

Joining with Kylie here on Tuesday for I Blog On Tuesday and On Wednesday I link up here for Midlife Share The Love with Sue and Leanne.

 

 

 

 

 

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Observations in October #3. 2018.107.

Observations in October #3. 2018.107.

Regular readers will recall I love mandalas.

I liked making patterns and designs too, but somewhere in mid 2016 mandalas caught my attention, and I was onto them. Firstly I bought a book which helped me design my first few (and I remembered geometry taught in primary school!) and then I took off.

I made a promise to myself to make 100. I exceeded it. Mandalas made by me have gone to others to use as decorations or just to enjoy. I truly love sharing them.

Our dining table, when visitors are here,  is adorned with versions made with laminating tbat have become coasters, table places and mats. My Dad has quite a few in frames at his place.

This week I did something I have been looking forward to for a while. I began teaching a class of adults about the mindfulness of colouring and using mandalas as my examples.

By the time this is posted, it will have happened. I shall report back!

Reporting back! On Tuesday 8 people joined the class and that was awesome. Each told me they came for learning, to have a new thing to do and to chat with others. It went so well they are returning next week!

What I am hoping is that you, my readers, also begin to appreciate and see mandalas where you go.

I noticed these walking down one street in Wyong on Sunday.

Three of my grandchildren were delighted to see that I had left parts of a new mandala for them to colour (using my best markers!) and they did a super job.

From The Mandala Workbook – A Creative Guide for self-exploration, balance & well-being. by Susanne F. Fincher. P1.

What Are Mandalas?

 Mandala is Sanskrit for “magic circle” and in the most basic sense, a mandala is simply a circle. Since ancient times in many cultures the mandala has had a powerful role in depicting, containing and expressing the sacred.

 Mandalas can come in many forms, from stone carvings, to domed cathedrals, ritual dances and calendar cycles.

 No matter their form, mandalas often us a profound way to examine our inner reality, to integrate that understanding with our physical selves and to feel connected to the greater universes. 

 “The circle has been universally accepted as a religious image of perfection, a shape of total symmetry, hermetically closed off from its surroundings. It is the most general shape, possessing the fewest individual features but serving at the same time as the matrix of all possible shapes” Rudolf Arnheim.

 

Mandalas are everywhere and here in each ceiling at Chris O’Brien Lifehouse is one:

I see them in nature. Everywhere I look.

 

Will you look too now?

Denyse.

Joining my friend Leanne and others who link up here for Lovin’ Life each Thursday.

 

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Reading Books Rocks. 2018.106.

Reading Books Rocks. 2018.106.

Recently I re-discovered reading…books!

I have always wanted to read and books were a firm favourite. I recall my mum, who was not a book-reader, saying to me in my early teen years that I could not borrow books from the library if I was going to spend all my time reading. I have the feeling she wanted me to be a bit more active helping her around the house!

I continued to read, long after “lights out”, as my room was on another floor to my parents’ bedroom so I continued my habit of reading. Fiction. School stories based on English lives, and many others. Loved them.

I had already been the library prefect at primary school so books were part of me!

But what happened to me over the past decade or so?

I suspect busy-ness caring for others, the introduction of the iphone, ipad and quick grabs of reading along with finding little to interest me in the preferred fiction  areas. Oh, I read Maeve Binchy, Joanna Trollope and Rosamund Pilcher in my 40s but by the time I got to my late 50s and 60s I found not a lot that was in my interest in fiction.

I switched to non-fiction and biographies and memoirs mostly.

Then in the last 4 years I have struggled to read a book because of:

  • lack of ability to concentrate
  • being drawn to the quick fix of social media more
  • the newspaper being enough of a read
  • nothing that held my interest and attention like I found in my earlier years

I joined the local libraries and borrowed some books, which mostly were returned unread. I trawled internet book sites and did make purchases but they are all in the:

  1. self-help
  2. learning about mindfulness
  3. understanding anxiety and depression
  4. life as per: Pema Chodron, Tara Brach, Brene Brown, Anne Lamott

These were ‘lifelines’ as I tried to understand and accept my life as it had changed 2015-mid 2017.

What was missing?

Escapism. Yet, I could not concentrate. I needed to move around and move on to something else especially as cancer entered my life.

Then in the past months as my cancer surgeries and treatments have been completed or are finishing, my mind is less on high alert and I am able to take time to sit and read.

I still, on occasion, feel the pull of checking my iphone,  but I am improving.

I may not yet be reading for long stretches or much fiction, but I am reading…B O O K S.

Lately I have been buying because some new release books were on my list of “MUST READ”.

Here they are:

I liked to call the lovely time after lunch when I was teaching: D rop E verything A nd R ead time so now I am giving myself that time-out too.

Do you recall that time for reading at school?

Maybe it was when your kids went to school. I hear some schools have continued the tradition and that makes this old teacher very happy!

What books do you enjoy reading?

Do you buy or borrow?

Denyse.

Joining Kylie here for I Blog on Tuesdays and Sue and Leanne’s link on Wednesdays called Midlife Share The Love here.

 

 

 

 

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Observations in October #2. 2018.104.

Observations in October #2. 2018.104.

Are we humans ever truly content with ourselves?

I am asking the hard questions today as I know personally, I find this tricky.

My husband/guru tells me “life it about living in the present”. OK. Not just him, but everyone who preaches mindfulness seems to have this view.

I can do this on some occasions now. I can bring my thoughts back to where I am (not so good ones too) and let them go of their own accord.

What made me observe this today?

My appearance. My weight. My changes.

For many decades I used food for calming and soothing and hid from much of my emotions this way. I often ate secretly. I have written about it here. I was performing well academically and professionally but not within my care of myself. The only, easy way was eating what soothed me. 

Back to the present.

I’ve had four years of over-arching anxiety related to life changes and transitions which actually resulted in not only Irritable Bowel Syndrome (diarrhoea) but a reduced appetite and a simple meal regime. I did not go out much at all. I was ‘at home’ in 2016-mid 2017 because of the increased symptoms.

I lost weight. It had started slowly in the year before we left Sydney but continued gradually until I found out I had cancer in May 2017. WOAH. Here is the page with the cancer stories if you are a first time reader.

From the time I was diagnosed with cancer in my gums until I came home from hospital it was inevitable I lost weight. I did. I was focussed on getting past the surgery stage for more than 7 weeks and if that is not an appetite suppressant, I do not have any other ideas. I wore clothes that were baggy but were not my fattest clothes as almost all of them were consigned to charity bins in the previous year. I did not think I would wear them again yet I was very reluctant to buy clothes which fitted me well.

I managed to convince myself to get some nighties and other items of a smaller size for hospital and recovering at home but it held no joy in me to need to do this. Cancer was my upper most thought. Then, once surgery was over, and I was able to finally sip water, and try a clear fluids diet in the 2 days before I came home, the dietitian visited me.

I was bombarded   given the message over and over that I needed to EAT what and when I could and that it needed to be foods of full-fat, high protein and smooth enough for a mouth with only a few teeth to get down. I had never, in all my life, been told NOT to lose any more weight.

I was weighed in hospital and then once I was home, because of the addition of an anti-biotic that played havoc with my gut I did LOSE weight. I got to the lowest I can remember. Ever. And it did not feel good. I knew I was not well.

Once the diarrheoa disappeared and my GP said ‘eat what you like and what you can keep in’ rather than the high protein/milky drinks on offer via the dietitian, I got back to a weight where i felt comfortable and well.

This lasted for a very long time.

Sharing My Image with The On-Line World.

Just under a year ago, my wellness was a great feeling. I began to think about going out by myself for a coffee. It took me until November to do that, and I decided to account for my day by entering a photo each day on Instagram under the various hashtags including:

#everydaystyle

#dresswithpurpose

#outfitoftheday

Many of my on-line friends, family and friends found my daily posts and supported my photos with ‘likes’ and comments’. I found a love of shopping for bargains again. It was fun and I was rewarded by the feeling and knowledge that I was doing this for myself and finally I seemed to understand it was good to feel great on the outside.

Cancer meant more surgeries, and more messing about in my mouth. Food intake became protein items such as mince based meals which I could easily eat with a few teeth and a tongue and treats became staples: little cakes, small donuts, icecream. Each day had something like that in it. I did not gain weight much at all over the time from October until my last surgery in May 2018.

Photos of the day became something others with cancer discovered and they liked the idea of dressing with prpose. With head and neck cancer, because our cancer is usually visible to others, eating and drinking out is seldom done even just going out. So, I was flattered to be followed and asked more about it.

Then, a day came I had longed for…and it had been delayed so it was even more special.

I had the upper prosthesis of teeth added to my mouth. It was in late August. It felt very strange and initially I could not eat much at all. Over time, I could as I became confident of my ability to bite and chew and now…..

I began to gain weight.

Boo. It is not much at all, and I really need to put it in context. 

I have gone from very restricted eating and feeling deprived but I knew I had an end in sight. 

What has been interesting to observe in me is my behaviour changes.

  • I am not hiding my eating like I did.
  • I am limiting my treat food.
  • I am realising that I cannot use food to deal with emotions any more.
  • I am also needing to come to terms with what life is like for me now.
  • I am considering no longer doing the “outfits of the day” posts because they are almost a year old.
  • I may replace them with a “self-care” theme.
  • I am having a small internal battle but less so as I chat with my husband about it, and also follow a mindfulness eating guide.
  • I am wearing my fitbit and aim to move more than 6K steps in a day. I am a work-in-progress!

I thought getting teeth would be the best and it is…but I can eat a very wide range of foods again…but I no longer want to end up very wide again!

It has helped me to share this so thank you for reading! I hope you made it this far.

Back to where I started. Are we ever really content with ourselves?

Denyse.

Joining the lovely Leanne and friends here for Lovin Life Linky and for the record, I am here with Leanne when we finally caught up for a coffee…and something to eat recently!

 

 

 

 

 

 

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But It IS Still About Cancer. 2018.103.

But It IS Still About Cancer. 2018.103.

Since spending much of last Tuesday, 2nd October, at Chris O’Brien Lifehouse (my cancer hospital) in Sydney, I have been affected by the fact that the reason I am in need of regular visits is because I have cancer. Specifically a Head and Neck cancer that was removed from my maxilla and upper lip named:

“Hybrid squamous cell carcinoma showing features of both verrucous squamous cell carcinoma & conventional squamous cell carcinoma”

On Tuesday I got a copy of the Histopathology report from 6 July 2017 surgery. It was ‘less confronting’ to read from this distance of time but it did have words in it I found hard to read.

With no risks per se, other than age, it seems my cancer took hold. I reckon it was there for many months before it was discovered after having my bridge/teeth removed when the gums were so sore and growing over the teeth (my request to do so in January 2017 was not heeded until April 2017). Diagnosis came in mid May 2017.

Why am I writing this now?

Because after all the surgeries (4 in less than one year), and many, many visits back to Westmead for my prosthodontist to make my mouth ready to accept the upper prosthesis of teeth, I thought I was almost done.

I am not.

Cancer is and will always ‘be there’ and in fact, my Professor and lovely Cate, reminded me “It IS about cancer” and that is why I come back for check ups and need to be vigilant myself about any changes.

My day of catching up, meeting people and doing my trip to Sydney independently was wonderful and I am so grateful that all of these people care about me and helping others with cancer. But it came home, forcefully, and is affecting me today with some sadness;

Cancer is always there. I had let it hide for a while behind everything else I was doing. I appreciate you reading this far! It is important, always, once I have something impact me as this has, that I share.

My husband is a wonderful person I can chat with always and I saw my GP to update him as a de-brief.

But before I go on, I had a TREMENDOUS day on Tuesday, noteworthy too because it was the first time I had driven myself to Chris O’Brien Lifehouse.

Asking Others For Their Thoughts.

I asked around  facebook friends who I know are through the active stage of treatments for their thoughts and some kindly replied with these words.

From S.:

“I’m past the ‘active’ part of my treatment, I’ve had surgery and radiation. Now I take a once a day tablet to prevent recurrence and I got 12 months all clear. But some days I feel just awful with fatigue and other side effects. I spend whole afternoons sleeping on the couch. I don’t feel like myself and it’s really hard when people say ‘oh you must be back to normal now’. I’m not back to normal and I don’t know if I ever will be. The weight of expectation (my own and others) feels so heavy and overwhelming sometimes. Depression, anxiety and feeling down even though you survived cancer feels inevitable and like I am lacking gratitude for my recovery. I’m not, it’s just hard”

From V.:

For me post cancer treatment is a mixed bag. I’m so grateful for my recovery but the fear and uncertainty for the future is still there. It’s a monkey on your back forever and you have to find a way to live with that monkey. The monkey is very loud and cheeky at times. Other times I give my monkey a time out and she sulks in the corner. At my recent follow up appointment I sat in a waiting room full of women ( I had early stage breast cancer).   They all had that haunted ‘how in the hell did I end up here’ look on their face and you just bravely smile at each other without any need for words.

From S.:

It’s my cancerversary on Tuesday so I’ll be blogging about it too! I don’t think the cancer shadow ever goes away but I try not to let the worry of it steal my joy of today.

From M:

 The elation of hearing the words “all clear” faded more quickly than I imagined and in its place was anxiety. Having been so closely under the microscope for so long,  I felt anxious that the cancer might return and it wouldn’t be spotted. Over time, this does ease and I look forward to my six-monthly check ups for continued reassurance that all is ok.

From M in N.Z.:

It’s normal to have a slump in mood after treatment ends. I availed myself of the Cancer Society psychologists who are trained to help us deal with the transition from treatment to the new normal.

I also went to the NSW Cancer Council website and found this article about ‘after the cancer treatment stage’.

Can cancer be a positive experience?

  • Many people find there are positive aspects to having cancer. Some even refer to the disease as a life-changing experience.
  • Cancer may cause you to re-examine your life choices, and may motivate you to travel, take up new activities or make lifestyle changes (e.g. starting exercise or quitting smoking). This shift is often gradual, as even positive change can take getting used to.
  • After treatment, some people want to help improve the cancer experience for others through advocacy or volunteer work.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#sUFxCMjbDj1ZGQz4.99

New friend to me, and known to many is journalist and M.C.  Julie McCrossin, who is now 5 years down the track from her Head and Neck cancer diagnosis and she sent me here, to her podcasts for the Cancer Council, and this one of fear I listened to again.

Liverpool Hospital Head and Neck Patient Support Group listening to Dr Ben Smith, Ingham Institute on cancer recurrence anxiety. Learn more about managing anxiety. Listen to The Thing About Cancer Managing Fear podcast cancercouncil.com.au/podcasts/episo… @beyondfiveorg @CCNewSouthWales http://feeds.soundcloud.com/users/soundcloud:users:314217701/sounds.rss

Julie said “I find the fear catches me unawares, like on my recent birthday”

Thank you friends for sharing.

So, I am not unique.

Always good to know.

And I can share my worries and fears with others who ‘get it’.

Having cancer never really ends, but I am always grateful for the friendships and new experiences I am having as a result of cancer.

Thank you one and all.

Denyse.

Joining with Kylie for I Blog on Tuesdays here and with Sue and Leanne here on Wednesdays.

 

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