Tuesday 18th December 2018

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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September Stories. #3. 2018.95.

September Stories. #3. 2018.95.

This is the third story telling some aspects of what it was like for me as a K-6 School Principal in a medium-sized New South Wales public school from 1999 until the beginning of 2003.

The first story is here and the second here for those who want to understand “how I got to the day I never went back as principal in September 2002.”

What was different in the beginning of the 2002 school year?

It was my fourth year as principal. Naturally much changes within the education system and in schools themselves. Families may move on due to work changes, sometimes those families are not replaced by new ones so a school population can begin heading downwards.

School staff (teacher and executive staff) may need to take leave for reasons of: family needs, maternity and long service leave as well as sick leave.

The other change heralding 2002 was the need to upgrades of maintenance (big cost jobs) to the school as it was one that was first occupied in the 1940s. Back in 2002 it was up to the principal to make the contacts with contracted companies to get in suppliers who could quote for major works. Then the principal, with enough funds in the school account, could give a project a green light. I was trained to teach but there I was, like all principals still, being a site manager and a financial manager as well as HR manager. Sigh.

Systemic Changes.

More and more, I noted as did my principal colleagues that schools were being expected (rightly too) to ensure that Codes of Conduct for staff were not only understood and agreed upon by them but if behavioural issues arose, then the principal would be the first person to begin making an action plan when the code was violated.

There always had been the mandatory notification to the Department back then called Family and Community Services where if a child was deemed by a mandatory reporter (all school staff are) to be ‘at risk’ then a first notification was to be made by telephone. This saw me, often waiting for a person to answer, locked into a phone call because of issues which may look trivial on the outside but may be clues to more. One such event could be repeatedly coming to school with no food. Other times it could be the child letting her/his teacher know that a parent may be unwell or even violent and it was never our role to investigate but we did need to reassure the child, then make the reports. Over the years I have sat in with a child in my role as a support person (if the child requested that from me) and it is heart-aching to be witness.

Our system, the N.S.W. Department of Education, was updating its role in terms of staff compliance and behaviour. This was nothing new and in fact teachers have had annual reviews in a conversation form for decades. Since I left teaching, this has become a joint venture between the schools and the overseeing body of school governance. Returning to my principal days. IF there was a reported incident told to me by a student, parent or staff member where a staff member’s behaviour (spoken, actions or in written form) was not within the Code of Conduct (signed off annually as part of mandatory training) then the principal had to act upon it. I dealt with the Officers from the Conduct Unit first who listened to what had been reported to me and then I was given advice that it could be managed at school level (guess by whom?) or it could be escalated, with the staff member’s knowledge to a higher authority. I had to do this on one occasion and the fallout for me came later. The temporary staff member who brought along a permanent staff member as a support person as the complaint was told to her from my account given to me was aghast at the inference. In fact, there was nothing I had done wrong at all….but remember way back “your role will be to bring this school into the next century” comment by MY boss…this matter was a prime example of how staff thought they could still behave but it was not compliant with the Code of Conduct.

And, Everyone Who Was An Executive Member of the School Went on Leave.

Not at all related to the above in two instances: one was to have a baby and the other because of longevity of service took her rightful allocation of leave…both for the remainder of 2002. But wait, there was one more. Yes, this person ‘broke me’ in so many subtle then obvious ways. And whilst I cannot say much, the continued leave based on medical certificates over and over did cause alarm for the parents of that class as it did me because the year had started well but then, as it was expected of me that this Assistant Principal would perform other executive duties (as do all teaching executive) this person refused and did not return after many months. Oh, yes, one day there was a return, after hours to access my office and computer telling the only person on site, the cleaner, that “I” had given him permission. Following that, he was disciplined and placed in a different school.

How Did That Affect Me?

In some ways it was a relief but in many more, as we geared up for the mid year reports, parent-teacher interviews and then Education  Week along with concerts and fund raisers, it was the beginning of my end. Sadly I did not see it for sometime. I kept on working even harder. Yes. I was doing the roles of the appointed executive who were on leave. I know that I did have three teachers put their hands up to do the relieving roles but without the experience and knowledge beyond their classroom teaching, I was giving more and more of myself to duties that were not mine. I was even writing reports for a class teacher with little experience. I will say now that I know I was over-doing things but I could see no way out. I was under pressure to perform well for the school’s sake and also to answer to my ‘bosses.’ My lovely boss actually retired at the end of Term One (sadly) and he was replaced by someone I knew well but was nothing like the people-person my old boss was.

Schools have a culture of their own. I can now walk into a school and get a feeling of how things are. In my school, as Winter took hold I know that my mood was also one of worry and concern. That was for the school and its staffing into the next year. When school populations decrease in the NSW public system, the principal will be asked to nominate a teacher to leave. In the majority of cases, teachers are very comfortable in their current school and rarely does anyone volunteer. So then it becomes a matter of ‘asking’ and ‘hoping’. The staff were getting the idea that with the school’s drop in population, which occurred when the Special Needs unit was disbanded and there was a reduction of families moving to the area, that “I” had something to do with the reduction. I was told this by telephone on the night (4th September 2002) I heard staff were arranging a delegation to my office the next day. They were going to tell me it was my manner with parents that was the cause. This may have had one essence of truth after I was threatened by a violent father who I had to get removed from the grounds, but generally I had a suppotive P&C and was a principal who was active and even did playground duty. But people like someone to blame. Of course, and that was me.

The Night I Was Told.

Before I go on, I was feeling emotions of overwhelm from the role. I remember with clarity coming back from yet another principals’ meeting where they was MORE that we needed to take responsibility for. I wondered how I could possibly manage more. In the meantime, I became probably hyper vigilant after another meeting about my responsibilities for Work Health and Safety. The school was OLD in many parts and I knew that there was much that did not comply, so I contacted my properties’ manager (the centralised one, not a personal one!) and for a fee, he came out and condemned or ok-ed parts I was concerned about. One such area was deemed so risky I had to tape it off before demolition and in doing so, incurred the wrath of the teachers who had been there forever. I could not take a trick. I stood for what was right because that is who I am. I knew I needed to have a timeout but it happened to be an official one to attend a meeting for a day and then a personal one to accompany my husband to a vital medical appointment.

Schools: I love them. But I Could Not Return To Mine.

Two days away from school…..then I was rung the night before I was to return. Wednesday 4th September. By one of my relieving Executive who I always thought was both compassionate and brave to tell me that some staff were getting a delegation ready along with a Teachers Federation Organiser to meet with me to discuss their issues. Initially I listened with interest and then with surprise/shock at what was apparently my fault: declining numbers, meaning one of them would be asked to transfer. Once I had talked (and been upset a bit) with her, I had successive phone calls from the remaining two relieving executive and it was then I said “I will be speaking to…(my boss) in the morning and will not be returning to school until I have”. They implored me not to but I had the sense not to act upon a threat like this.

I broke. I broke down. I was ill. I couldn’t contact my boss: left a message that I would be going to my GP in the morning.

That would be the start of pretty horrible days but also some days of relief and release. Yet, nothing ever has helped me get over the fact that I loved being a principal but one day I never went back.

There was so much shame in me for that and it has almost all faded now some 16 years later.

It’s been hard to learn THIS….

Next and last story will be about, sadly, how poorly my then employer treated me, but how my own return to wellness was all because of my inner capacity aided by a loving husband, a supportive family and friends network along with..some years later, an inclusive blogging community.

Thank you for your kind words having read these stories. I have not told them in as much detail for many years but I am glad I could have the chance again.

It really helps to write our stories! That is why I blog!

Denyse.

Joining with Leanne for Lovin Life Linky here on Thursdays.

 

 

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September Stories. #2. 2018.92.

September Stories. #2. 2018.92.

When I began this series last week and ended with...to be continued, I know that was a disappointment to some readers and also could have been seen as a way to have you come back to read more. In some ways it was but in reality it is because, as I wrote, I realised the length of the September Story about being a principal needed more space.

I also did not realise until this week, that the day for publication of September Story #2 is R U OK Day. In the past, I have blogged about R U OK day using the R U OK guidelines and always hoping that if any reader needed help, they could find it by asking or calling below. In keeping with being honest, I will admit I could not tell my employer or fellow professionals I was NOT OK. I shared that with my husband and my G.P.

So, keeping that in mind, here is some background I wrote some time ago to get me started…again!

 

Maya Angelou once said, “There is no greater agony than bearing an untold story inside you.”

My story, as a K-6 teacher, English as a Second Language teacher assistant principal, deputy principal, relieving principal, principal, begins…here.

As I trawl back in my memory bank to unlock the story of mine. It’s no-one else, yet it was about more than me.

The day I never returned to my school as its principal.

Etched into my mind, my psyche and my whole body.

Thursday 5.9.2002.

But that is not where the story starts.

In one way it starts here:

The evening of Wednesday 4.9.2002 was when I knew. I knew that my emotional health was broken to the point of never being able to return to:

  • the school I had led for almost 4 years
  • the position of principal I had been appointed to from January 1999

Why?

That is where I need to take a breath…and let out the sigh and say ‘it is not an easy story to tell….and an even harder one for me to relate…but I will.’

First Year as a Principal.

I was busy learning about the school and the fact that the person I replaced had actually died the previous term without anyone at the school having access to school keys, passwords and the like made it more difficult. The school was a medium sized (around 450 kids from K-6) one with added Unit for Students with Special Learning Needs and an Autism Satellite class. Within the stream of classes there were two “OC” groups: Year 5 of 30 students and Year 6. These students gained their place at the school via competitive examinations the year before.

The school culture was, as my boss told me, one I would need to lead into the 21st century and I knew that but I also knew to hasten slowly on some changes whilst making some practical ones quickly. The previous principal, sadly departed, had been there for quite some time, shared very little in terms of financial goals for the school but, as a local which I was not, whatever he had done was acceptable. One big ticket item that happened under his leadership was a sports area which catered for a number of court-based sports.

One of my first spends was blinds. In a school with a second storey and in a very hot/cold place in outer Sydney, some respite from the sun and to make activities such as work via a whiteboard or screen effective this was vital. Once done it gave the school, from the inside and out, a better appearance for the community.

The school was fully staffed with each role filled: 2 Assistant Principals (teaching) 2 Executive Teachers (teaching). There was a group of speciality teachers: for Gifted and Talented students, Special Needs – Intellectual, English as a Second Language, Computer and Technology, Special Learning in Mainstream. I had been familiar with leading each of those roles in my previous schools with three  ‘new’ to me

  • having the O.C. classes
  • overseeing the use of the school’s facilities with an outside the NSW Dept of Ed jurisdiction
  • supervising a Special Needs Unit of 3 staff within the school

I like to think, looking back from 2018, that I did all I could to both understand, accept and get upskilled quickly to enable me, the educational leader of the school, to best meet the needs of those students, also considering the skills of their teachers and to see that the parents of the students knew the children’s needs were paramount.

That of course, was also integral to my oversight and management of the remainder of the school in the mainstream classes.

There were computers for my work and communication via emails did not arrive for a few years. It was a telephone, fax and mail school and being on the outskirts of Sydney the communication and responses were not as frequent as the suburbs of Sydney.

The year went well with ME being the major learner of course. I was the ONLY new staff member but I also had to ensure that MY leadership goals were part of the new school’s as well. There was a lot of policy discussion which was mostly related to why there were none where I was used to having these done. Like I have said before, I was there to make change but I also needed to handle matters carefully.

This year I turned 50 and on the staff was another person my age and I recall a joint celebration with two cakes. We did socialise somewhat during the school term with a restaurant meal or something similar with ataff. We had regular morning teas and I promoted collegiality and support for all staff.

My executive staff were good but two of them sought promotion – one to a country school, the other to a city school and of course I was pleased for them professionally when their  work was rewarded with what they sought. I recall an incident which was a critical one as it demonstrated a lack of foresight, organisation and care from one of the senior staff. This related to a student being announced at the final year assembly as Vice-Captain, when in fact, she was to be a prefect, and another student was the Vice-Captain. In an embarrassing time for the student, her family and the senior staff I had to interrupt the announcement with the correct person’s name. From that time, I was aware of more loopholes within the school’s management. Policies for example. In a first for this executive staff, there needed to be a written policy on the how, what and why of student leadership nominations, voting and results. From my side, it looked quite poorly scrutinised and certainly that family of the student who was incorrectly announced as vice-captain continued to let me know of their upset long after that incident. No apology in the world was good enough.

Onward into 2000 & beyond.

There were some staff changes into this year of the Sydney Olympics and I had to call panels of parent representative, school representative and one other teacher to enable me to interview, by merit selection, 2 people to replace those who had been promoted. More on this in the third post next week.

The education communities in and near Sydney loved the fact that this was the year of the Sydney Olympics and we even had an extra week off school in September 2000 for all of the available transport (buses mostly) to be geared to getting people to and from Olympic venues. A person who had carried a torch in part of the area near the school brought it to us and we all got to hold it. We had special days and the vibe was good. We even made our Staff Photo that year based on Sports and the Olympics.

I had some lovely people working at the school in administration and I know my mantra (from my boss) of keeping on heading into this famous 21st century was embraced but it remained a load on me as the school leader both administratively and educationally. There were courses in finance and human resources to attend and of course ones to train us further in Child Protection.

This became even more important as time went on, and I recall sitting at yet another training course thinking “I am responsible for all of this yet I have no control over it”. It was quite a  watershed moment for me.

I loved the role even so. I felt I brought action and innovation to the school and lifted its place in educational areas. I may not have been a local in a very conservative area but I did my best to keep open and good relationships with the local community, my Parent groups and the community of schools nearby.

At home, I know I really never switched off. The laptop came home with me. Newsletters written by me on the weekend. There was no email or other communications like that until 2002 so everything was done and then printed off for the families each fortnight. I improved more of the external appearance with signage and keeping areas safer by removal of damaged play equipment. I had a General Assistant 3 days a week and because of the size of the school grounds, he spent most of his time on a mower.

I had to organise school repairs and more via private contractors and be savvy enough to know how to ask for quotes and then to see how the school might benefit and when to get those happening in a child-free time. I would be phoned at home in school holidays about staffing and maintenance and there was/is not a time-off for school principals.

Next Time: Story 3.

What happened in the lead up to my emotional health breakdown.

I have written only some of what it is like to be a school principal. Despite the fact, as above “one day, I never went back” I loved the role. However, now in this age of social media and 24/7 connections, I do not believe I could perform the role without cost to my mental health.

Therefore I honour R U OK Day and this message below is for those who might be part of a conversation and not sure what to do.

I wish I had known that I could have admitted to a colleague or my boss how hard things got for me in mid 2002 but I could not. Not until I broke down at home on 4.9.2002.

Denyse.

 

Joining with Leanne for Lovin Life Linky here on Thursdays.

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My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

I recently wrote Part One of the Anniversary of my cancer diagnosis here.

The second part is actually a bit harder to write.

I am grateful of course for my cancer being taken via surgery but I seriously had no idea that to recover and be implant-ready would be up to and well over a 12 month period. This is because, as I understand it, bodies heal in different ways and react like that too. I also know that this mouth reconstruction of mine necessitates a lot of work by the multi-disciplinary team of medical, allied health and dental experts.

I am ever-grateful for this team.

With Prof Clark & Cate Froggat, Clinical Nurse Consultant & Surgical Assistant

I know that my Professor Jonathan Clark  leads the Head & Neck team and he is also working with the training of other doctors just as he learned as a resident with the late Professor Chris O’Brien at Royal Prince Alfred (RPA) Hospital. From the Westmead Oral Sciences comes  my Prosthodonist, Dr Suhas Deshpande and his colleagues including Dr David LeinkramDr Matthew McLachlan. Dr Deshpande’s Nurse, Ofelia has seen me through some emotional times and is a very kind person. Norma at the reception desk at Westmead Oral Sciences always has a smile for me and a welcome that’s bright.

Associate Professor Ardalan Ebrahimi was the first person I saw on May 18 2017 and who examined me and put together, along with Professor Clark what would be my BIG surgery in July 2017. A/Prof Ebrahimi was kind enough to respond to my 2 detailed emails pre-surgery and saw me post-surgery in 2017 along with  Justine Oates Head and Neck  Nurse Practitioner who re-dressed my wounds and ensured continuity of care once we were back home on the Central Coast.

In my 10 days post Surgery #1, I was cared for by a number of professional nursing staff firstly in ICU with Dr Tim  then on Level 9 North of Chris O’Brien Lifehouse where Jason was the NUM. I will single out registered nurse Roan as he cared for me most early mornings and made sure I got out of bed to get some sunrise shots!

From the Head and Neck team who were part of my first surgery was a team of doctors including Dr Laura Wang & Dr Rahaul Jayaram who saw me most days in hospital.  Allied professional staff  at Chris O’Brien Lifehouse were physiotherapist Leah ensured I could walk post July surgery after fitting my right leg with the boot, dietitian Jacqueline gave me lots of guidance for eating post mouth surgery and the speech therapist Emma made me drink a cup of water (ahh!) and speak ( not a hard task given my propensity to talking!) to ensure I was going well before leaving Chris O’Brien Lifehouse last July.

I thank the wonderful anaesthetists and anaesthetic nurses who ensured not only that I went to sleep  but that I woke up with no dramas. One was Dr Murray Stoken and another is Dr Paul Goonan. On 16 May I was cared for by Dr Stephanie McInnes. 

Of course I have the excellent and fabulous Cate Froggat, my Clinical Nurse Consultant & Surgical Assistant who is the gentle and smiling person looking out for me in the operating theatre and in post-op consultations.

How could I not mention Julie and Priscilla…a hug and smile each time I see them, those who keep all of us seeing Professor Clark organised with compassion and care.

Once I was home, as I have outlined before, I was also in the care of the Central Coast Public Health Community Nursing Team for around 2 months and Eileen was amazing with her knowledge and advice.

My dentist Dr Alistair Brown saw me for a mouth check last October and to clean the remaining ((and oh so important to me) 8 bottom teeth. He was the person who initially referred me to Dr Stef Calladine, oral surgeon,  who did the biopsy last May and broke the news to me over the phone that I had squamous cell carcinoma. I will always be grateful for her caring manner and more importantly for referring me to a place I had heard of called Chris O’Brien Lifehouse and to a specialist I had not, Prof Clark.

My GP. Dr Owen Greene. What a caring and understanding man he is. I saw him sometimes up to 4 times in a week when I was recovering from BIG surgery #1. He reassured, he checked on me and he continues to do so, letting me know you are doing really well. His office staff and pathology people ask how I am going tooIf I pop into the chemist next door, Tim the pharmacist is always asking how I am going too.

There are those that I cannot mention all by name but have been integral to my diagnosis, surgeries and recovery times:

  • staff at the various Imaging places in Sydney and on the Central Coast
  • staff at the Admissions Desk and Pre-Surgery Desk at Chris O’Brien Lifehouse
  • the nursing staff pre- and post-op in the recovery areas
  • my psychologist from the READ clinic in Erina saw me a couple of times and was most kind in her assertion that I was doing well without any more need for her services.
  • the social media account for Chris O’Brien Lifehouse @chris_obrien_lifehouse & the art programs at COBLH @arterieatlifehouse (Instagram)
  • those lovely people who welcome me to their coffee shops like Randa at Fibonacci Wyong  and ask after me, along with my fabulous hairdresser Tiffany, our great podiatrist Sean who came to the house to treat me when it was easier for me, and our Property Manager, Naomi, who was delighted to see me recently. Kyla who makes the most delicious cupcakes always asks how I am going when we catch up. In fact, I won a generous voucher recently and as cupcakes are something I CAN eat, this is just the best!
  • the Beyond Five Organisation: Nadia for her reaching out for me to help with publication of my story written by Kirsty. Check my photos here to see the fundraising ribbons. World Head and Neck Cancer Day in July 27. I wear my ribbon and blog about Head and Neck cancer because not many people know about this cancer. I do now!

Then definitely NOT last nor least are my friends and family. Those who connect on-line too. My blogging friends, my instagram friends and those from Facebook and Twitter. I love connecting!  To know of so much love, concern and care being out there for me after the diagnosis and through recovery in the year it’s been is marvellous. Thank you for reading my posts, checking out my Instagram pics and ‘liking’ the blog Facebook page.

Each day in 2018 I made a commitment to myself to do at least these three each day:

  • get dressed in an #outfitoftheday and go out – for a coffee, a browse, a shop or just to look at a view
  • go into nature or observe nature and then capture this in a photo
  • make something creative, be it a mandala or a pattern or just so art fun.

I cannot single any one person out from family and friends….other than this person:

My husband. There for everything for me. Always. Love IS what keeps us together…and has done for over 47 years.

Sending everyone my love and gratitude.

Denyse.

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

On Thursday this post links with Leanne here.

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What Is Friendship? #LifeThisWeek 16/52. 2018.33.

What Is Friendship? #LifeThisWeek 16/52. 2018.33.

When I selected this topic I already knew it may be a challenge to write about.

The challenge though was from my inner meaning of friendship.

I admit that having and keeping friends in the world of teaching has been hard. Why?

It’s because we move around from role to role and school to school. I know as I left work in schools to retire fully, I had hoped to keep connecting with some of the people but over time, the friendship drifted into nothingness. It was also one-sided I found.

Instead of berating myself about this, I looked at my life and why. It WAS about the moving on and about. It WAS also about interests changing too. We had a lot of couple friends as young teachers and enjoyed the company and camraderie, even keeping in touch once we were all back in Sydney. However, family changes and priorities, along with our health and moving away Sydney saw a decline in friendships.

But that was OK. That is life.

Luckily for me, I am social in my outlook and can arrange to meet with people who are on Facebook and that is fun. The friends on Facebook, Instagram and Twitter have made many a lonely time better and I have met so many of these people via blogging I am very grateful.

And, despite the somewhat dated graphic above, when I put out the call on Facebook asking ‘what is friendship?’ I received some lovely and most helpful quotes! Thank you so much, Friends-in-the-Computer!

 

Friendship is surrounding yourself with people who celebrate you, not people who tolerate you. (E.)

Friendship is seeing each other after 18 months and everything is exactly as it was the last time you hung out. (L)

Friendship is comfort and ease, no judgement, just open hearts. (J

 Friendship is never having to be anyone other than yourself. (E)

(And never expecting your friend to be anyone other than themselves!) (E)

Friendship is always having each other’s backs, being each other’s greatest champion and greatest support. (A)

Friendship is everything that’s already been said and also being there through the good and bad, not just a “fair weather friend” if that makes sense. (V.)

Friendship is having the same sense of humour, good discussions (the flippant, the intense, the nonsensical and the hard), reciprocal gestures of support/acceptance of help (if these are imbalanced, the friendship is too), and being the rock of support in there with you without being the rescuer (and again, vice versa!) – give as generously as you receive! (K.)

Friendship is your friend arriving for dinner, and needing a little weep, and that just being part of a great evening together. Ease, love, acceptance, and solidarity. (A)

Friendship is a safe haven for kindred spirits. (V)

I liked these two quotes as well.

What I did love, and miss quite a bit, about friendships back in my working life and semi-retired life was getting together for a lunch, or a coffee date and having a good old catch up. This was fun.

However, I regard myself as fortunate to have married a man I love and who IS my best friend. He and I have seen each other through 47 years of love, triumphs, tragedies, child-rearing, illnesses, house buying and selling, and arguing! Yes, we are opposites in many ways but we are always there for each other!

Having a photo taken is NOT his favourite thing..so this pic is very much about being my best friend AND he has learned so much about photography being my ‘insta husband’ each morning! Thank you, B.

So what are your views on friendships?

Love to hear from you!

Denyse.

Joining with Alicia here – if she is having her link up this week.

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!

Next Week’s Optional Prompt: 17/52. School Holidays Memories. 23/4/18


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Changes To ‘MY’* Cancer Recovery Plan. 2018.30.

Changes To ‘MY’* Cancer Recovery Plan. 2018.30.

Are you a planner?

Are you someone who is pretty well organised ahead of time for: birthday cards to be sent, lists for shopping to be made, appointments made and kept…and attended…should I go on?

Well, I am.

It is part of my DNA I reckon!

Yet, as I wrote here only last week, there I was saying I was becoming used to uncertainty.

That was Tuesday.

On Wednesday  28 March 2018 I got an inkling things with my cancer recovery were not going according to MY* plan. That is, what I reasonably anticipated given the information I had prior to each surgery and after it. OK, I admit it: once I hear a time frame I tend to believe it and stick to it.

Do Read on.

What Plan Did I Have?

Not for the year I mention..but you get what I mean!

A linear, calendar one of course! That’s how I have been used to life moseying along. I know, I am supposed to have embraced uncertainty but I admit, like 99% of us humans, I am digging the certain …the plan….the ‘being sure’.

  • 17 May 2017: Cancer Diagnosis Received by a telephone call from the Oral Surgeon who took the biopsy the previous week.
  • 18 May 2017: Meet With Head & Neck Surgeons at Chris O’Brien Lifehouse* Camperdown in Sydney for Overall Diagnosis and Plan For Radical Surgery.
  • 24 May 2017: Meet with Prosthodontist at Westmead Oral Services who will oversee and make all to do with my ‘newly reconstructed mouth’ during and post surgery.
  • 30 May 2017: Second Visit to Prosthodontist and CT scans readying my Professional team to make decisions about parts of my leg to be used for reconstructive surgery in my mouth.
  • 6 July 2017: Big Surgery: #1. 11 hours.
  • 6 July-15 July 2017: Recovery in Chris O’Brien Lifehouse.
  • 15 July – 27 July 2017: Recovery at Home, Treatment of Leg Wounds by Community Nurse, Visit to Surgical Team, A/Prof Ebrahimi and Justine Oates – Head & Neck Cancer Nurse Specialist.
  • 28 July 2017 – 21 September 2017: Recovery at home, visits by Community Nurse decreasing and in mid August I began driving again as ‘boot’ on leg was off. Independence increased.
  • 21 September 2017 – 9 October 2017: Continued wellness returning, eating always a challenge but doing what I can to prepare meals for me, seeing our GP for support (from July actually!) for any concerns I had inside my mouth. If he had any concerns, I could contact Prof Clark.
  • 10 October 2017: Visit to Chris O’Brien Lifehouse to see Prof Clark. Told 2nd Surgery would likely be before Christmas.
  • 11 October 2017 – 5 November 2017: continued independence and back into life as best I could. Started my Outfit of the Day pics!
  • 6 November 2017: Visit to Westmead for planning for next surgery. I admit, I often do not exactly understand the ins and outs of my surgeries… even though it is well-explained. I sometimes have to ask my husband about it. I blame being spatially-challenged and that it is all happening inside my mouth! 
  • 8 November 2017: Phone call from Prof Clark’s Practice Manager, Julie who is awesomely patient with ME that my 2nd surgery is next week! OKayyyy. And it is a day surgery only.
  • 15 November 2017. Leave the Central Coast at 6.00 a.m. to get to COBLH* by 9.00 a.m. We made it. But I confess my anxiety was high and tears on the Harbour Bridge in peak hour traffic were evidence of that. Surgery around 2 hours at 11.30 and we were on our way home by 3.
  • 15 November 2017 – 20 November 2017: Recovery at home. More stitches and re-arrangements in my upper mouth was OK. Pretty painful as nerves seem to have been affected by it did recede. But, a skin graft was taken from my right thigh to add extra skin inside my flap to grow to help my upper lip reconstruction. Visited Prof Clark at St George Hospital. I was going OK but one side of the opened then stitched ‘flap’ was showing some silicon (should not have) so “keep an eye on it”. We did.
  • 29 November 2017: weird but wonderful event. I could have a LONG bath…previously I could not get my leg wet…and over time in that bath, undo the bandage and let the wound covering get wet. It did, and I did this over the next few nights. Until, it eventually came away leaving pink new skin.
  • 5 December 2017: To Prof Clark at COBLH. The flap area did keep retreating somewhat and the silicone was showing. Prof Clark cut a bit off. Then he asked my husband to take pics inside my mouth and send them to him from time to time.
  • 6 December 2017 – end of December 2017. I admit I was worried about the flap and what that might mean but Prof Clark eventually said, things are OK and you can stop sending the pics. Phew. It is VERY hard to get pics inside the upper mouth!
  • January 2018: Just the usual at home activities and going out for a coffee & buying clothes (shh).I knew a 3rd surgery was ahead but unsure when. However, it was to my surprise that I found it would be on 7 February 2018.
  • 6 February – 7 February 2018: No drive down on the day of surgery this time, meant after an overnight stay in the same street as COBLH I could walk with my husband up to Day Surgery admissions by 6.30 a.m. and was in theatre by 7.30 a.m. having said hello to Dr Deshpande (my Prosthodontist) and being blown a sweet kiss from Cate Froggatt who is the Chief Nurse working alongside Prof Clark.
  • 7 February 2018: Back in Day surgery by mid morning and got dressed to go home. Was sporting two foam pieces with stitches attached out of my nose, above my lip…that WAS a surprise. Mouth was its usual uncomfy place but with added hardware. More abutments had been added to my ‘new jaw’ and a stent (mouth guard) covered it all. OK. Hard to get used to. It was uncomfy and eating even more of a challenge.
  • 14 February 2018: a hot and long drive to see Prof Clark, and the helpful Priscilla looking after my IPTAAS forms, and then chatting with Cate about my blog. She had read it and was recommending Nadia at Beyond Five check it out. My foam pieces and stitches came out. Yay. Sent home knowing then I would not see Prof Clark again till a cancer check on 22 May 2018 but would see a LOT of Dr Deshpande.
  • 23 February 2018: to Westmead where Dr Deshpande’s colleague (who had also attended my surgeries) Dr McLachlan removed the very stinky stent. Dr D had a broken hand so my mouth was observed by him and anything that needed to be done was by Dr McL. They were so pleased with the health of the gums, they said I could have the stent off. Cue smiling and hallelujah!
  • 26 February 2018. Disappointment but Prof Clark deemed that the stent go back on. For the reasons of keeping the gums in check. I needed to remember this is about getting my mouth right!
  • 1 March 2018. To Westmead and both Dr D and Dr McL observed and cleaned the area and put the stent back with gel only. NO gauze.
  • 1 March – 6 March 2018. In pain. A lot. Where the stent met my inner cheeks. I rang Dr D and he told me to return the next day.
  • 7 March 2018. Dr D reduced the edge of the stent and it was back on and I was in much less pain. Phew.
  • 15 March 2018. To Westmead where stent was removed for impressions to be made for the ‘false teeth’ to be made in wax to get an idea of how my smile and position of upper teeth will appear. At this visit, Dr D reiterated his concern that my mouth is too tight to take the implants.
  • 28 March 2018. To Westmead where the fruits of Dr D’s labours in the time since last visit had me happy (after some initial reservation) to see my smile again.

So what has happened since last week is that on Thursday before Easter, I was told by Dr D (after my phone call from Prof Clark’s Priscilla booking me in to see him early May) that in consultation with Prof C, the fact that my mouth was too tight would mean a 4th Surgery on 16 May.

I was sad. I was a bit over it all but I also knew deep down this was probably going to happen.

What now?

12 April 2018. To Westmead to have my upper false teeth fitted to the abutments for me to get used to the teeth in my mouth for the next month. I am unsure that they will help me with eating but we shall see. I am certainly pleased that Dr D wants me to try these teeth as he believes there is a social benefit too.

1 May 2018.  To COBLH to see Prof Clark, wearing my ‘new but temporary teeth” and for him to check out the area ready for vestibulplasty #3 and surgery #4.

16 May 2018. Planned Day surgery. We will come down and stay the night before. From what I am told by Dr D the plan will be for me to recover for 10 days at home (with the potentially stinky gauze under the new stent. Sigh.

22 May 2018. Post- op Check up at COBLH with Prof Clark. Hopefully all is well and any stitches that need removing are. Unsure if I will be wearing the foam blocks again.

Late May 2018: Westmead for stent to be removed, gauze taken out, area cleaned and impressions made for …the implants. Eventually I will have the implants but it will depend on the healing.

May into June 2018: Keeping the stent in all the time with visits at intervals to Westmead.

June into July 2018. As above, with a view to impressions and so on for implants.

What have I learned about planning and cancer?

  • That each person’s body heals at its own pace and it may not always be what the optimum is.
  • When I learned about the surgery I would be having, in May 2017, it was set out that from surgery (it ended up being in early July) to implanted teeth, is usually around 8-9 months.
  • What is my forecast now that a 4th surgery is planned?
  • It is close to 12 months from the first surgery.
  • In fact, this 4th surgery will be one day short of the anniversary of the day I was diagnosed.
  • I accept that I have the best people caring for me who have my best interests at heart.
  • I accept too, that despite my planning and the fact “I do all I can to heal well” sometimes bodies do what they do.

Last Wednesday was a highlight of HOPE. I think every cancer patient wants HOPE.

Mine came unexpectedly when I saw myself SMILE again. It was better than I ever imagined.

In light of my selfies and all the record-keeping I have been doing in processing who is this Denyse now…I made a small video of my face…and smiles and more from my 65th Birthday to last Wednesday. It is good for me to see the progress. I hope you can check it out too.

I know this was a long post and if you read all the way, thank you!

It was helpful for me to write it and to make the little vid.

Denyse.

Joining with Kylie Purtell for I Blog on Tuesdays here.

Joining with the linky called Midlife Share the Love with Sue and Leanne here on Wednesday.

And lastly but never least is Leanne’s Lovin’ Life link up on Thursdays here.

 

 

 

 

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