Tuesday 18th December 2018

Head & Neck Cancer: “Beyond Five” Ambassadorship.2018.130.

Head & Neck Cancer:”Beyond Five” Ambassadorship.2018.130.

Last week I wrote a post called Farewell and Hello. It was pretty long so I stopped at Farewell promising to be back for Hello. Here we go!

Regular followers here know that I was diagnosed with head and neck cancer (squamous cell carcinoma) in my upper gums and under the top lip. The whole story is here, in posts, from the day I was told until the recent post on adjusting my eating requirements when I am out of the house.

Hello, I am now a Beyond Five Ambassador!

How this came about was partly after this day in October 2018 when I was back at ‘my’ hospital Chris O’Brien Lifehouse, but I had offered earlier this year if there was any way I could help spread the news about head and cancer awareness I would like to do so. I had already been sharing the work of Beyond Five here on the blog for World Head and Neck Cancer Day 2018.

Following that day, the Board of Beyond Five met, Sr Froggatt and Professor Clark are board members and Nadia Rosin is Manager, Business & Communications,  and I then received a formal letter of invitation to become a Beyond Five Ambassador.

Role of Community Ambassador

  • • Share your personal head and neck cancer story for use in Beyond Five communication e.g. website, social media portals etc.
  • • Raise awareness of Beyond Five through family, friends, other personal connections.
  • • Where possible, attend events e.g. patient support group meetings, education days to help raise awareness of Beyond Five.
  • • Support Beyond Five grant applications where relevant e.g. as a consumer representative.
  • • Provide feedback to Beyond Five to help us improve and develop the way we work.

About Beyond Five.

Background

Beyond Five was established in December 2014 and is Australia’s only not-for-profit organisation supporting patients with head and neck cancer, caregivers, family and health professionals.

Beyond Five was established to provide evidence based, comprehensive, easy to understand and easy to access information to everyone, regardless of where they live.

Beyond Five is the first organisation in Australia supporting patients and their families through their cancer journey, from diagnosis to treatment and life after cancer.

Mission

Beyond Five’s mission is to improve the quality of life of everyone affected by head and neck cancer through education and access to support and to raise awareness of head and neck cancer nationally. We are committed to working collaboratively with all specialties across Australia to achieve our mission.

 

I have joined the inaugural Ambassador, Julie McCrossin and Marty Doyle too. Their stories and mine, can now be found here on the Beyond Five site. There will be more ‘thinking time’ for my involvement and what form it may take as everyone is going to be on a break soon. We are getting together in February 2019. I look forward to helping where I can especially now I am post almost all of my cancer treatments and now in ‘check-up and check-in’ mode.

I know that I am keen and ready to help others learn more about head and neck cancer as it is not well-known. In fact I had no idea you could get squamous cell carcinoma inside your mouth (and other areas of the skin inside the head & neck region, till my day of diagnosis in May 2017.

And here we are sending Season’s Greetings.

I wish that no-one had cancer of any kind, of course, but the fact of life is we do. I want as many do, to help pay back the time and effort and research that has gone into the amazing surgeries and mouth reconstructions I had. That I can smile and eat well again is testament to the wonderful work of my team and their integration of allied professionals too. I have written posts about how many helped get me well again. Now, it’s onward….and to say I am glad to be an Ambassador for Beyond Five is an understatement. It is an honour and a privilege to be in this new role.

I want to do the role justice, and help others as I too have been helped.

Thank you to the Board of Beyond Five for entrusting me with this role as your Ambassador.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love and with Leanne here for Lovin Life link up.

 

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Taking Stock 49/52 #LifeThisWeek. 2018.127.

Thank you dear bloggers who link up! At this time of year, it gets a bit much for some who are busy elsewhere to blog and link up. Keeping this in mind, there are three more optional prompts for Life This Week in 2018.

50/52.  Share Your Snaps 10. 10/12/18.

51/52. Christmas. 17/12/18.

52/52. Free Choice! We Made It! 24/12/18.

Then there will be a blogging break here to return on Monday 7 January 2019 with these optional prompts.

1/51. Hello Again. 7/1/19.

2/51. “Word/Intention/Nothing” 2019.. 14/1/19.

Meanwhile, I will come up with some more optional prompts over the breaks and publish them on the home page. I do hope, as I wish, that you will be back to link up in 2019 because you are in a community-space here and I love our connections! That IS why I blog! Denyse xx

 

Taking Stock 49/52 #LifeThisWeek. 2018.127.

This is (or till today!) an every 9 weeks’ optional prompt for Life This Week and the last one for 2018. I thank the originator Pip Lincoln who blogs here for her words and sharing. I will continue using Taking Stock in 2019.

I always respond to the words with no reference to previous updates as I like to make it “as it is now for me”. I do know, for me, my changes in outlook and health (both for the good) are seen in my years’ of posts called Taking Stock.

Here we go for today!

Making: time to write a post in the days before has helped me feel more in control of my blogging schedule.

Cooking: more meals than I have for quite some time as I now have teeth up top and below.

Drinking: water as much as I remember which is why I tend to have a water bottle in a few places in the house and with me in my bag – bad day recently though when said water-bottle leaked everywhere on my way to Westmead.

Reading: bios/memoirs almost exclusively and it is Mike Carlton’s ‘On Air ‘I am really enjoying as he is only a couple of years older than me so charts a time I remember well growing up before leaving Sydney to teach in the bush.

Wanting: not much..if I leave out the indulgence that was a desire for an iWatch which I could never justify. A house of our own but I am sick of myself on that score…so not much it is! A sign of contentment I believe.

Looking: outside a lot with the kind of weather we have had but lately it is dark when I look outside…to check the solar Christmas lights are on.

Playing: audible books in my car on the way to Sydney for the reasons related, usually, to post-cancer treatments and the like

Wasting: my time mentioning iWatch. Seriously cannot ever justify it. Will cease and desist asking.

Sewing: it is time for me to delete this one from my list of Taking Stock but I sure know why Pip has it because she is a clever seamstress.

Wishing: politicians were well-behaved and provide a good example to their constituents. And the children of the world.

Enjoying: moments walking on the grass outside. It literally is grounding in my barefeet and I enjoy it so.

Waiting: not for much at all these days and that is good!

Liking: that it is now an established routine for my husband and I to enjoy morning tea out once a week.

Wondering: why we waited so long. Oh. I know. Cancer made it hard for me for a while.

Loving: the man I fell in love with over 48 years ago…even more each day. Yes, old people can stay in love!!


Hoping: that said husband continues to remain well after a somewhat ‘average’ winter/spring.

Marvelling: (but not in a good way) that the horrendous fires in Queensland as I write can be seen from outer space.

Needing: rain which we had here in parts of N.S.W. to move quickly north to where it is needed..oh, & to the west as well where it is still a drought.

Smelling: the sea air these days when I arrive at the beach for a look/walk. It takes me back to family holidays with our kids and after leaving our western Sydney home to arrive at the ocean, we would get out of the car and breathe that salty air!

Wearing: tops, bottoms and sandals more these days, even though I have a few dresses, I am still most comfy in the others.

Following: the sagas on-line of…politicians and propriety, bankers and theirs..oh well. They all need lessons on how to use a moral compass I believe.

Noticing: little dots of colour from the growth of weeds on the edge of the road. They make me smile when I drive along and see them. You just can’t keep nature away from growth.

Knowing: that next year will be a slightly different one blogging-wise with the end of an era called I Blog On Tuesdays.

Thinking: that my post for the last I Blog On Tuesdays tomorrow will be about I.B.O.T!

Feeling: nostalgic about the good old days of blogging but very glad there are many more who join in now and we have a great community here in Australia and overseas.

Bookmarking: pages in Lori Deschene’s little book called ‘Tiny Buddha.’ Lots of lessons there.

Opening: my recipe book as I can enjoy more crunchy and chewy foods again and I just might make an old favourite again soon. But not saying, in case I do not!

Giggling: at the cutest little baby at the shops who was prepared to give me a smile. Gosh how I miss that age!

Feeling: grateful beyond belief for an amazing year, with some surgeries, some recoveries, a setback, then some awesome treatments getting me back some teeth for eating and smiling.

What’s been happening in your part of the world?

Denyse.

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!

Joining Alicia here for Open Slather and Kell here for Mummy Mondays.

Next Week’s Optional Prompt: 50/52 Share Your Snaps 10. 10/12/18.


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Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

I am dedicating this post to the memory of a lovely woman whose life was cut too short by cancer. Chelsea, my friend Leanne’s step-daughter lived life to the max. Cancer may have been ‘in her’ but cancer did not take her spirit nor her love of life…and for her family including her husband and your daughter. My shared experience with Chelsea was that we were both patients of Chris O’Brien Lifehouse and because of that connection I wrote one of the Letters to Chelsea Leanne mentions on her blog.

Thank you for sharing the love and the life of Chelsea dear Leanne.

 

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

Update to update: even though I have outlined what was disappointing to me in this post which was an event from last weekend it has also taught me more about my capabilities in eating than I knew. I like many had tended to think eating with new teeth in my gums would be ‘back to what it was’. Not so, and I am now being more realistic and flexible.

Yesterday, 30 November, I turned 69. I had a wonderful and low key birthday celebration at a morning tea for two with my dear husband. We chatted, ate well, had our favourite drinks – small latte with an extra shot for me and English breakfast tea for him. Afterwards we wandered through the grounds of this lovely nursery, bought a plant each and came home to a relaxing afternoon spent at home. It really was just as I would have liked.

Except for this:

  • it has taken me sometime to adapt to some extra teeth added to my own on the lower jaw and I am very conscious of how much ‘saliva’ escapes and am constantly wiping – especially if I am talking…and drinking/eating. But with my husband or by myself I just get on with the ‘tidying up’ and enjoy what I can
  • I know my upper lip is shrinking in. I accept that. But, did you know you cannot ‘blow out the candle on your cake’ unless you get much closer…and I also cannot drink with a straw as there is no vacuum made in my mouth
  • I have a small but significant pain area in my….index left hand finger…the dominant one..the one where I write, draw and play. I have had pain in the tip of it before, as there is significant arthritis in the joint below. But not as bad as this. Our G.P. could not see anything affecting it from the outside, so he advised anti-inflammatories for a few days.
  • both of the above are so small, in the overall scheme of things I know, but I am writing about them (not using the left index finger!) because they have both given me cause for concern today especially.

Out Socially for Lunch.

  • Last Monday I had lunch at Chris O’Brien Lifehouse and was asked what I could eat. I nominated a simple cheese white bread sandwich and a lemon slice I had tried there before. Whilst I did not eat more than half of the cheese sandwich, I managed and did not feel as self-conscious as I thought. I also took my leftovers home! Win.
  • Today, I ventured to a local large club for a Christmas lunch get-t0gether with the Head and Neck Cancer group I am in. It was the first time I have gone out for anything other than coffee and cake. I gave it my best shot. It is a very friendly group and I did get to know people more today in this social setting.
  • What I found though was a reality check for me about my current status in recovery as a Head and Neck cancer patient.
  • Knowing I ‘could’ have taken the easy way out and ordered a safe coffee and cake that I knew I could handle, I decided to join in and actually have lunch! Remember I have only ever eaten a meal at home for over 2 years.
  • At the ordering desk, I asked for a small meal: I could see a baked dinner was on offer and was pretty sure I could manage some meat, potatoes, pumpkin and grave. “No”. Sorry,  we do not do small meals on Saturdays. “Can I have just one slice of meat with a couple of the vegies?” “No”. No offer of a kids’ meal (I think they would have refused that too) so I asked could I have just the potato and pumpkin and gravy. “Yes”.
  • OK. I thought, well this is a lesson. Not everyone ‘gets what they think they can’ and also maybe this establishment does not cater for people with different needs. And, I stayed quiet about it. I was a guest. Everyone else at the table was either way down the cancer recovery trail than me or could find foods to suit them.
  • I could eat one half of each vegetable and then as it takes me a while, it got cold. I had leftovers and asked if I could take them home. “No”.
  • I went and got a coffee later, no cake, chatted some more then drove home and ate….some lunch.

Why Write This?

  • It helps me to process it and maybe others who know what I am talking about can understand
  • The fact that I may have given myself something creative to do over the past 3 days as I needed to has not helped my mood much. I really miss using my finger.
  • I am hopeful, that by being patient and having the meds it will come good. Or I will go back to the G.P.
  • I am concerned I over-expect of myself, so writing this is helping me process
  • Maybe I just needed to ‘get it off my chest’ as they say!
  • It is not a post where I am wanting any sympathy but I did get insight into a world out there today that, in some respects, has no flexibility to meet special needs
  • I also know people face this as a challenge every.single.day
  • I am wondering if my ‘reaction’ was a bit of an over-reaction to a day which I had wanted to go well, and in terms of socialisation it did.
  • But it came up short for me, the head and neck cancer patient getting used to eating again in a regular environment, and so I wonder if I need to be more prepared for the situations I place myself in as I change from ‘no eating’ to ‘limited eating’ to ‘regular eating’.

It feels like two steps forward and one step back….but probably it is more like five steps forward and maybe one step back!

And maybe I will take a little container of my own next time for left-overs!

Thanks for reading!!

Denyse.

P.S. It IS most unusual for me to post on a weekend but for my emotional health I am…and I already feel better for writing it out. THIS is why I blog!!

Linking up with Leanne here for Lovin’ Life on Thursday…sending love to Leanne and her family. xx

 

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November Notes #5. 2018.125.

November Notes #5. 2018.125.

I went to a million (give or take) in-service courses as a teacher/principal.

I think they are called “professional learning” now and I also know they “count” towards accreditation each year.

I also devised and delivered many as both a teacher and University tutor and Adult Educator.

So what is this about in relation to my final November notes?

It’s how my personal development was & is enhanced by having cancer.

I am aware I have written at some length about the processes I have learned behaviour-wise and they are here, on the page “Denyse and Her Cancer Story”.

What I will do now is write about my changes in behaviour and attitude and how this can be linked to my cancer diagnosis. To make it easier and for me to see the changes, it will be in photos.

  • I gained independence
  • I became much less anxious and fearful following my diagnosis and subsequent BIG surgery
  • I tried new things with greater ease than ever before
  • I knew that to follow the processes and trust in the professionals, I would be OK.
  • I sometimes had to challenge the negative voice inside that wanted it all “done and now”
  • I found calm in more ways than I realised: particularly by going outside, into nature and doing art.

And then more:

  • As I already knew from the experiences of ‘exposure therapy’ the more I did the more I could do with increased confidence
  • Things do not occur linearly nor with ease and of course there were (still are at times) so tears that spill over and some worries
  • What is different now is how quickly I recover and re-group
  • It feels so much better for me to be a calmer person who is less afraid to travel, meet up with friends old and new and see greater times ahead
  • I can also put the “cancer voice” back in its box with relative ease by using my thinking strategies well.
  • I no longer try to ‘case manage’ anyone else’s behaviour.
  • I accept with great assurance that not only am I doing the best I can, so are most people
  • I am much more likely now to reach out a hand in friendship and care rather than recoil because of the anxiety and fear based on social engagements and effects of IBS.

And this is why and how having cancer helped me grow. It is a learning process of course. However, I am loving how my life is now and what I have gained back from this past 18 months living with a cancer diagnosis.

There is such a phenomenon called Post-Traumatic Growth. Article can be found here.

This resonates with me:

Types of personal growth

People may experience different types of change while coping with cancer, including:

  • Improved relations with others. Living with cancer may increase feelings of closeness or intimacy with family or friends. It may make it easier to connect with others who have had a traumatic event.
  • New life experiences. Having cancer may change your priorities, causing you to make different life choices. You may be motivated to make a career change, overcome a fear, or fulfil a life goal.
  • A greater appreciation for life. A cancer survivor may have an increased regard for life’s value or a new sense of vulnerability to death. This awareness may help you appreciate the world in new ways.
  • A sense of personal strength. Living with cancer can help you develop increased mental strength and a sense of empowerment. You can be proud of what you have accomplished.
  • Spiritual development. Some people living with cancer find they gain an increased interest in practicing religion or adding spiritual depth to their daily lives.

Having post-traumatic growth does not mean that you have completely overcome the stress and other feelings about having cancer. Growth and suffering can happen at the same time. In fact, most people who report post-traumatic growth also report having struggles. A person may grow in one area of their life and not another, or in a number of areas at different times.

I have been incredibly fortunate of course to have the surgeries and treatments and I never downplay cancer but as an educator I know what it has taught me and continues to teach me.

Have you had experiences that have changed part of your life and your outlook?

Please share!

Denyse.

Joining in with Leanne for Lovin Life linky here.

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Telling My Story. Chapter Seven. 2018.124.

Telling My Story. Chapter Seven. 2018.124.

Dear Readers,

This is the seventh instalment in Telling My Story. I hope that you are enjoying the blasts from my pasts. I am finding your comments very supportive. This chapter takes us through the beginning of  two years, namely, 1976-1977. You might consider what you were doing then or even if you were alive. I know! It IS over 4o years ago. Are you ready?

But first, let me remind you….I started telling this story almost 2 years ago. Then there was a slight long break while I dealt with the matter of oral cancer. By the few times I wrote though I was smile-added back again!

Photo (#1) For Telling My Story.

Photo (#2) post major cancer surgeries.

Photo #3 for Telling My Story. Post Upper Teeth Prosthesis.

A Teaching Career Means a Move or Three.

By the end of 1975, my clever husband had earned what was called “First List” in the then promotion systems of N.S.W. Department of Education and along with starting a part-time degree, HE was on his way, up the career ladder and I was more than happy to support him as I needed to. This meant the following….

He was offered an Acting Principal’s position in one of the most remote schools in New South Wales. By remote, I mean very and would still be regard that way. Here’s where it gets interesting and would not be part of a job-ad these days. He found out about the vacancy in this school via the travelling N.S.W. Teachers’ Federation Organiser who said “why don’t you take up the offer to go and see it?”. We thought, ‘why not?’. I was happy(ish) teaching, our daughter was now 4 and we could make a change BUT I was still longing for a second child. More about that later.

He Went, He Saw, He Said “We will take it”.

We were ambitious but also professionally-centred and once my husband had driven the many miles to this school, stayed with the then-teaching team, and driven home again to our little one teacher-school and home, he said “let’s do it”. By WE I should add, the pre-requisite that there be a married couple take the two jobs on offer. Teaching Principal and Classroom Teacher. That was because of the extreme isolation and only one place to comfortably live. I saw photos of the place and loved the idea of the new challenge. Our daughter, though under school starting age, would be able to come to school as there was a pre-school year attached to the school which was part of the Principal’s responsibilty.

Special School Indeed.

This school, a two-storey building, had a library underneath and shelter for play, a toilet and shower block and a flat in the school grounds for visitor accommodation. Across the sandy playground was the School Residence, up on stilts too with a garage and laundry underneath. The previous husband and wife teaching team had added in the window air conditioners to the school and to the residence. It was needed. Back of Bourke this is!

The student population, aged from 4 years to around 12 years was, in the majority, from the Aboriginal community which was located on the banks of the Culgoa River, some walking distance from the school. There were ‘white kids too’ including our daughter, the children of the local land lessee and the son of the shopkeeper (one shop which stocked limited supplies but was also the telephone exchange).

Adventures BEFORE Starting School.

By adventures, I really mean ADVENTURES. So, between us, we had organised the movement of our furniture to the new school and house – some 6-8 hours drive from where we had lived. We went back from Mum and Dad’s in Sydney to oversee the packing up and then we followed them in late January 1976 for our belongings would arrive, and we unpacked in the HEAT and went back to Sydney…only a 12 hour drive…which we did in one stint this time. A small respire time in Sydney, then with a very packed station wagon – 4WD were only farm-type jeeps then and we got a new Ford Wagon because we were going to a remote place and needed to have one of the more commonly known vehicles “just in case” (and there was one of those!).

With our daughter safely sat between us with a proper seatbelt harness, and a very, very full wagon, we took off for Dubbo. First stop and where we were most welcomed by the District Inspector (who would be a visitor from time to time) and his family to have a meal and stayed in a motel. All good! Not really. You see, we are talking many decades ago, no mobile phones and so communication was by radio announcements and talking to locals about road conditions. We were due to go to the school via a series of dirt roads after coming off the main road to Bourke…until we knew there had been heavy rains and flooding was expected. My husband got the news to “take the detour via Warren and you should get in to your place”. OK…I admit I had no idea it was a wee bit troubling that this was necessary. Packed (even more!) with some fresh food and more groceries…we got to the school and residence…after a MUCH longer drive and pretty wet conditions.

But WAIT…there is MORE.

So this school of ours was located away from the Culgoa River on a flat tract of land..in fact is all flat. The house and school were on a dirt road (heck everything was dirt) and the Aboriginal camp was next to the river. Just up the road from us was the store and over the road was a tennis court, an airstrip and further over, by the river, on the other side of the bridge over the Culgoa, was the land leased by the family who would give us both support and grief!

The rains came…and came and never left. The River was already flooding from the rains in nearby Queensland (only 14 miles away) and we were in for a LONG stay. School starting day came and two students turned up. Our daughter and the boy whose parents ran the shop. We began the day at school but due to the conditions came back to our place, and the mum of the boy said “if anyone calls from the Dept I will put them through to your place.” The system was helpful as it was a party line but certainly there was no privacy AND the phones only operated 9.00 am – 9.00 pm.

STUCK in the MUD.

Isolation is a new environment but with lots of advice and help from the locals was made better. In fact, we got school started once the pouring rain stopped and the lessee of the property collected the kids from the camp to bring them to school. His own kids and wife had left when they knew the floods would be arriving and went down south. We did not have them come to our school until Term 2. In the end, we got to know the support services very well. The Doctor in the nearest town who had never met us, could consult on the phone when we had a couple of health issues, the Chemist in the town would fill the scripts AND I could also ring the small town grocery store to order food and all of what we could get would be flown to us via the RAAF helicopter or a RAAF carrier plane. Other times, the supplies might land via a large drop off by the helicopter. The store got its supplies which helped us and the Aboriginal community. Sometimes too, someone may be taken to hospital that way.

In the initial days of the flood, we had no power for a few days BUT fortunately keeping the freezer closed and packed meant no food spoilage. We had a portable gas stove for a meal or two. And, the man who had the tractor had us to his house once a week for a cooked meal. He had more options on his property. He would come and get us in the tractor (see my husband in the second shot, with the friendly farmer, walking ahead to check levels and ditches and then on this occasion it was for us to see what things looked like along the way.

In the first photo this is the road to the school and our house is obscured by the school is in the distance. To the left of the photo, out of sight, is the airstrip and tennis courts.

THIS LASTED FOR TEN WEEKS.

In some ways it was one heck of a learning journey and in others it was very very tiresome. It was the very poor condition of the dirt roads because tractors and 4WD had left tracks and bad scarring on the road so no regular vehicle like ours could go anywhere. Somewhere in this time, my parents who had been very concerned about the situation drove up to Moree and chartered a small plane to come and visit us. The air strip had dried out. It was the roads that were impassable. Armed with all the makings of a fresh baked dinner and more my brave Mum and Dad hopped in the little Cessna and came for the weekend. They flew back the same way but with lots of love and hugs from their much-adored granddaughter. 

GETTING OUT.

I admit I became very stir-crazy and whilst it has been a term and a half of learning much about a new community I was determined, somehow to get to town for wait for it…Easter Eggs! How could our daughter miss the Easter Bunny? So one Saturday, our friend with his tractor, went before us, and gave us newbies to this situation, guidance on where to go to avoid being stuck and eventually we were on a better dirt road to town. We got back OK too.

HIGHLIGHTS and LOWLIGHTS and NO LIGHTS!

Just writing about the transition to the place, then what we went through personally and professionally means I am going to write more about the stay (and it WAS only for two years!) in point form:

  • The second term meant a more settled life. Well, in terms of the weather it was. My husband, who was both teaching principal and my supervisor meant “we” had some interesting and challenging conversation about teaching. You see he had not ever taught with another staff member, I had, and my temperament is totally opposite to his. We sorted this with roles and responsibilities (as every school should!) and subject area responsibilities and his work toward his next promotion, called List Two, was what he needed to achieve within his  stay at the school.

 

  • This was achieved by him and his classroom and school management was policy-central and all very much in keeping with educational standards then, and with the District Inspector (friendly man from Dubbo) staying with us too, it was good to know he had succeeded.

 

  • The unfortunate side of such isolation related to both social matters and health matters. My husband became ill for a number of reasons and was even hospitalised for some time and in the meanwhile I was relieving as Principal (and a worried wife!) and the N.S.W. Department of Education sent a replacement teacher from Bourke (almost 2 hours away) to stay and help out.

 

  • We also did our best to mix with the local and wider community, playing social tennis (the afternoon teas were amazing!) and getting together for meals. However, we would always be, as in many country settings “blow ins”.

 

  • Our daughter was socially isolated but as an only child she was quite content with play and reading at home by herself. We did have one young student board with us for a while to be company and to help our daughter too. That same family had our daughter stay when we went to Dubbo for a weekend.

 

  • Getting OUT was important. School terms were up to 3 x 13 or even some 14/15 week terms. We needed the break and so on the last Friday of term, our car would be packed and ready. I must add, that IF any rain fell, we would be delayed. Because of the road conditions.

 

  • The District Inspector allowed us an early Friday finish mid-term so we could drive to Dubbo (6 hours away) and shop and have respite for the weekend.

 

  • On one of those occasions, in Winter, it was meant to be that  we chose a Ford in the year we left Sydney. As we drove along stone filled road, we would get chips on the windscreen but even worse, as we found one almost dark afternoon getting back onto the BITUMEN at Coolabah, our lights were shot. The garage was still open. Yay. He had replacement bulbs. Yay. MY husband installed them. Yay. BUT, our daughter aged 5 was growing worse from a virus and her temperature was high. NO!

 

  • The next town east was Nyngan and we called into the hospital. She was given something to help and we drove through the Dubbo with great relief. Next day, with her health on our minds, we had a doctor call and she got meds. I also “needed” to go shopping and she had a particular wish to have some new sneakers. I got them. What a weekend. Grocery shopping was done too but I chose parcel pick up. THEN at 11.50 a.m. I remembered shops closed on Saturdays and not open till Monday. One ‘fast’ drive to Coles and I loaded them up.
  • The school was a hub for health professionals from Sydney and other places with specialist teams and most would arrive by air. Some came in 4 WD convoys. The professionals would examine anyone including us and in that time we had the late Dr Fred Hollows arrive with his then girlfriend, Gaby, in the team to check everyone’s eyes. We needed to have food at the ready and I often entertained thanks to cooking multiple dishes and freezing them along with my now-regular little cakes.

 

  • I also travelled to Brewarrina to see an Obstetrician who, upon hearing my story of tests done previously declared I would never have another child. See more about that here. It was such a definite and firm view, I mourned what was not going to happen and gave away all of my baby things to the Aboriginal community.

 

  • ABC TV did a story about folks living where we did and we, along with the children in the school were part of that program as were the locals from far and wide.

 

  • We had a grant from Disadvantaged Schools Program which funded the students from the school aged 7 and over, along with family carers and us to fly to Sydney, stay in lodgings in Kings Cross and experience places like Manly beach and the Zoo. Our daughter came with us but stayed with my parents and met up with us back in Manly.

 

  • But….this place got to us in some ways,  particularly access to health services for us both. We announced that at the end of the two years minimum we would be transferring back to Sydney as we hoped to find our first house and have our daughter attend school with more kids than 25.

This news was not taken well by SOME of the community but many also understood our motives. We left the school, and the area on the last Friday of term and with relief, when we got to the bitumen, this (then) 28 year old wife, mother and teacher sighed with relief.

What next?

Stay tuned: Chapter Eight soon.

Denyse.

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

 

 

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November Notes #4. 2018.122.

November Notes #4. 2018.122.

At the beginning of 2018 I decided to make myself accountable on-line.

To ME!

Accountable by sharing on Instagram and then via Facebook and Twitter three daily posts.

Every.Single.Day.

I did!

Well, I did until the reason stopped having meaning for me.

Routine.

Despite being retired and recovering from what was then “only” two surgeries on January 1, I committed to posting:

  • A Daily Outfit post: #outfitoftheday #dresswithpurpose
  • A Daily Creative post: #creating #process #product
  • A Daily Nature post: #gettingoutside #noticingnature

I remain committed in many areas of my life: career, partnership and more and so this was going to be keeping me:

  • accountable to ME for 3 different reasons
  • every day had 3 opportunities to share on line and enjoy interactions
  • help with a daily structure
  • less likely to sit around doing little
  • to keep my mood steady and somewhat elevated as I had interactions outside the house…and via connections on-line
  • managing my life with cancer by having 3 separate interests and reasons to connect with others
  • finding new people on-line, including groups of people with Head and Neck cancer
  • using my eye for noticing …and my creative brain for making…and helping my recovery by dressing each day for a photo

Here’s how it went, via a few examples from each category, until it stopped…on 30 October 2018.

Why Did I Stop?

I had had enough. Once something serves its purpose it IS time to move on. But there was also another landmark I had passed and I think it also had something to do with the decision.

On 30th October I had posted a “photo of me” every day for the previous 365 days (maybe a couple of exceptions) and I know how much I was both encouraged and buoyed when I first started doing this as I had only had cancer (and just one surgery!) for a few months. It fed my need to be ‘seen’ even with my face and body taking some blows and then recovering after surgeries 2, 3 and 4. BUT, I was knew things had changed for me.

From 31 October, I decided to post ONE instagram/facebook/twitter snap a day based on Daily Gratitude.

I still show me in whatever I wore that day, but on the side of the collage I group 4 similar reasons for gratitude for me.

I am finding this something meaningful as I wind down till the end of the year.

I will still, on occasion, post other pics but no longer via the need to do 3 a day for 365 days!! I cleared out a lot of my Instagram feed too now, keeping mostly the images of me as they help me see my progress.

So, that’s it.

This is the second last November Notes and I have decided not to do a Thursday post in December unless there is a need. I did enjoy the challenges of thinking more for my creative space…

Just for July, Appreciation in August, September Stories, Observations in October & November Notes.

When the reason has changed, change what we do. Do you?

Love to know what you think about habits that keep on going on and maybe they are no longer needed.

Denyse.

Joining the bloggers who link here with Leanne for Lovin Life on Thursdays. (I will still link up a post, even if it is not a newly published one!)

 

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My Bookmarks & The Big Hug Box. 2018.121.

My Bookmarks & The Big Hug Box. 2018.121.

Regular readers would know I have a ‘thing’ for creating with paint, markers, crayons and pencils. In fact, this creative side of mine has bloomed in the past few years. I made a pact this year to create daily and I did until about a month ago. Here’s the post about my creations which focussed mostly about mandalas. I will come to the bookmarks soon!

I am someone who has learned to enjoy the process of creating as well as the product. Many of my mandalas have been given away or made into coasters and placemats after laminating.

Before mandalas became a thing for me, I created patterns in grids, patterns in free form and more. I just get/got a lot of relaxation and meditative experiences through taking my time, letting my mind flow and enjoying the sensations of adding colour to blank pages.

Then: I still am a product-person too! I began to make bookmarks using strips of the patterns for friends and family. I laminated them and it was pleasing to see them being used and appreciated by others.

But: I ran out of people to give them to…

Until: I heard of the Big Hug Box. Lisa Greissl, a cancer patient herself 3 years ago, wanted to help ‘give back’ and to raise funds for cancer research. I followed Lisa via the Big Hug Box and could see how special her “boxes of hugs via gifts and more” were. I wanted to help by contributing and asked Lisa would my bookmarks work in her gift boxes.

Her response was as joyful and positive as she is. YES. Emphatically YES. A bright, hand-made bookmark would be a great addition.

I loved my skills being helpful to others with cancer. In fact, I was stoked to see an Instagram photo from a friend I met via blogging…who sadly has cancer…but had a Big Hug Box given to her and one of MY bookmarks was in there. I felt like I had contributed to her HUG.

Above is a selection of my most recent delivery to Lisa: 200 bookmarks. I have probably donated well over 100 before this!  I admit I now streamline my making.

  • Firstly, the art is cut into suitable size,
  • I have sheets of coloured card which I cut to match The Big Hug Box’s dimensions. I need, in future, to make slightly smaller ones for the Random Hugs of Kindness Boxes.
  • I paste my patterned paper on one side of the card
  • On the other side I add a now-signature Owl stamp at the top of the bookmark and a little quote that is on the bottom
  • Somewhere along this side of the bookmark I write an individual “My Bookmark”, later I embellish that side with some dots of paint.
  • On the front, where the pattern is, I often add a star, or heart symbol sticker and then as Lisa suggested, a little message from me on a sticker: Hand Made For You By Denyse Whelan Who Blogs Here: denysewhelan.com.au
  • Then I place 4 or 5 into an A4 laminate sheet and start the slow but careful job of feeding them in.
  • Lastly, over time again, I trim each card and the group becomes  individual bookmarks.

I do take a few days to a week to make a group of bookmarks. I recently made 60 on top of these at the request of the Central Coast Cancer Centre Head & Neck/Lung Nurse who is part of the group I meet with once a month. She will be adding them to new patient packs.

One reason I continue to make these is that I can share my love and care for another person affected by cancer as I was. I do make a definite and  conscious decision as I create each one to send loving kindness.

Update!

A little while back, Lisa, who lives only 5o minutes away was planning a “packing of Big Hug Boxes and Random Acts of Kindness Boxes” morning at her place and I accepted her invitation to attend. There were a few of us connected to Lisa via friendship and/or cancer. I even got to meet the creator of Colour Me Well who asked me to supply some of my mandalas for cards she was selling to patients.

It was a heart-warming morning, and at the completion, we had some photos taken. Lisa then went to Chris O’Brien Lifehouse on Monday 12 November to deliver 40 boxes, ready for gifting to cancer patients, and donated by various groups and individuals. I was thrilled to play a small role.

There is much to be said from helping our fellow humans and connecting and for those of us with cancer even moreso. Do check out Lisa’s wonderful work on The Big Hug box and she is now partnered by Cancer Aid app (another start-up from Chris O’Brien Lifehouse). Do share the information about the Big Hug Box widely…it helps all of us.

Lisa’s story on Channel Tenhttps://tendaily.com.au/news/good-news/a180530vxb/cancer-survivor-gives-back-with-the-big-hug-box-20180530

Thank you Lisa for your initiative and hard work. I know it’s for the love of it too but with a young family and working, it is a lot that you do for many!

Denyse.

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

 

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November Notes #3. 2018.119.

November Notes #3. 2018.119.

I have reflected and decided that…..my daily “outfit” photos will continue.

Initially I was going to stop at the 12 month mark, i.e. end of October 2018.

And then I thought, go to the end of the year.

A blogging friend said “stop doing it if it has served its purpose.”

This was good advice and then I considered what my purpose was and is.

  • initially it was to get a more confident me to have a photo taken and put it on social media. (Y)
  • then it became enjoying finding new items of clothing that fit and were ‘on special. (Y)
  • as it continued into the beginning of 2018, I set a challenge of “no repeating an outfit. (Y)
  • the above petered out as I began dressing for the situation each day and so needed to be mindful of the weather and where I was going. This has continued (Y)
  • to be noticed as someone who is/was prepared to be photographed during face altering cancer surgeries(Y)
  • sharing my images on line with many hashtags became tedious and I have a private account so #hashtags are not even seen and I stopped (Y)

What now?

I keep on. I do agree with my fellow Head and Neck cancer patient friends on-line and in real life that each of us needs a purpose each day and one of mine that is 99% non-negotiable is to:

  • dress with purpose
  • have a photograph taken
  • go out for a coffee alone, with my husband or meet up with a friend.

The following collages are from around March 2018 until October 2018.

Scroll through to some fun and other images…including one or two of the Instagram Photographer Husband.

Here’s a few more reasons why this will continue…for some laughs and to remind ME how far I have come despite a cancer which took away half of the inside of my mouth.

Thank you most of all the my partner in life for care, encouragement, saying “smile” to me, and loving me!
The feeling is mutual. This photo was before one of our Morning Tea ‘dates’ recently.

What do you do with purpose each day?

Have you been sharing what you wear on social media?

Tell us more!

Denyse.

Joining with Leanne (who is doing outfit shots and looks amazing!) here for Lovin’ Life linky on Thursdays.

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