Wednesday 27th October 2021

Questions. 31/51. #LifeThisWeek 94/2021.

Questions. 31/51. #LifeThisWeek 94/2021.

I am a question-asker.

I tend to ask a lot.

I am also an answer giver too.

However, I remain naturally curious and so, as a result have asked a LOT of questions over my 71 years on earth.

When I was seen by my head and neck cancer surgeons on 18 May 2017 I may not have had many questions because to be honest I was in shock as I had only learned of the diagnosis,the day before.

So, in the weeks that followed I found I did have specific questions, that I did not want to try to navigate on-line and my husband and GP did not have knowledge, so one of the kind surgeons answered them for me after I sent an enquiry to my head and neck surgeon’s office. His words helped me so much and reduced my worries.

I also found out then:

Do NOT be afraid to ask questions. There are no SILLY questions.

It’s now over 4 years since I was that very worried woman in a clinic room at Chris O’Brien Lifehouse, where the head and neck team met us: me the patient with B my (now) carer.

August 2017

I have, over the years, also had the help of a psychologist to get my somewhat faulty  thinking and ideas sorted. I was not a 100% emotionally well in the years 2014 into early 2017 but I am also a problem solver. However this was one problem I could not solve by thinking my way through. I needed to both accept the emotional upsets I had and why along with the BIG life transitions I was coming to terms with. I have written about some of those experiences in past posts.

Before I continue. Last year, this head and neck surgeon from Adelaide tweeted his explanation for cancer. I have always felt there is an element of ‘blame’ attached to some cancers. These words resonated. Thank you @guylrees.

 

This year I was sent a copy of a book which I said I would review. There was a throwaway line by me when I saw its title via social media when I said to the publisher, send me a copy and I will review it. Exisle Publications were serious. They did.

I have read the book by Dr Toni Lindsay and it answered even more questions for me.

  • Questions I did not know I even wanted answers for.
  • That is the thing about a cancer diagnosis, sometimes it takes a long time to determine what you need or want to know next.
  • This then is my summing up of the book: from a Head and Neck Cancer Patient At Chris O’Brien Lifehouse.

I have never met Dr Toni Lindsay but I do know of the many other professional services that are offered where I had my surgeries.

 

The Cancer Companion: How to navigate your way from diagnosis to treatment and beyond by Dr Toni Lindsay.

My Views As a Cancer Patient.

  • This is a well-written and set out guide, and its name suggests it can accompany a person (cancer patient, family member, carer) throughout the cancer experience.
  • It’s easy to read, and divided into sections:

Part One: On Treatment.

  • And then it was cancer
  • Normal
  • Finding your purpose and meaning. Part 1.
  • Preparing the treatment and having a plan
  • Chemotherapy
  • Radiotherapy
  • Surgery

I identified strongly with ‘hearing you have cancer’ as it still comes as a shock even though I had guessed. Of course, for me, like all, there were fears and worries. Lots of days when I know I would be doing something, and then it would hit me like a punch. “I have cancer”.

So, what I got from this part, as someone who remembers how it was, is that all is perfectly within an expectation as a newly- diagnosed patient.

Having a plan helped me but the plan often came in the form of a check list from me, to prepare for trips to Sydney where I would need to have surgeries, treatments at the prosthodontist and for the first year, my husband would need to drive me and stay somewhere close by while I was in hospital.

Even though we no longer lived in Sydney where everything I needed for my on-going treatment, we felt fine with the drive, and sometimes a stay overnight. My husband bore the brunt of times waiting…sometimes visiting our family, other times going for long drives until he heard he could pick me up.

We are also fully retired (aged over 70) and so making a plan was relatively easy as we did not have to take work and family priorities into account. There is quite a bit in this part for carers too.

Part Two: Off Treatment.

  • Finishing treatment
  • What if it comes back?
  • Finding your purpose and meaning. Part 2.
  • Why is everyone behaving like I am back to normal?

My reactions to what I read here were as if Dr Lindsay was in my head!

It did help ‘normalise’ my thinking and my progress.

For that I was grateful to have confirmation from someone professional.

I have a husband who is a trained counsellor and his help was good in that he could sometimes ‘calm my farm’ as they say when my emotions when a bit awry.

I am now, almost 100% able to do this for myself.

Ah. The advantages of time passing and experience as well as cancer free results at surveillance visits.

 

Part Three: Living With Advanced Cancer.

  • Living with advanced cancer
  • Finding your purpose and meaning. Part 3.
  • Planning and decision-making (even if you don’t need it!)

I read this section with feelings of sadness because I know of friends with head and neck cancer, and other cancers, who are living with advanced cancer.

I do know, however, that if there can be others support systems for example, psychologists and/or palliative care team with experience of helping people through, the prospect of what MAY lie ahead could feel less fear-based.

I would highly recommend not only reading this section but acting upon the help offered too. 

 

Part Four: The Psychology Part: How Can I Manage All of this.

  • Mood vs treatment
  • Anxiety
  • Sleep
  • Appetite
  • Fatigue and exercise
  • Body Image
  • Relationships and sexuality
  • Working
  • Being present
  • Being grateful
  • Managing other people
  • Pain

I have a great G.P. He started being my G.P. about 6 weeks before my diagnosis in May 2017.

Like my husband, he has been what I call a ‘cheerleader’.

Someone in my life who helps, encourages and supports me.

In the various times when I have been worried and scared, and this was prevalent a LOT in the first year, he was a voice of reason and reassurance.

I also have a professional team in Chris O’Brien Lifehouse and at Westmead Oral Sciences who I can call or email. Their help, at the other end of the phone after I have sent a photo or text has been exemplary.

In turn, all of the above has helped me see my way through.

Having a rare cancer: both statistically and type, I often found “I” became and still am, the expert in my mouth and its care. I

have learned a lot from those who helped reconstruct my mouth, along with my local dentist, but from my 4th year of recovery (about this time in 2020) I became the ‘one who knew’ most about my cancer and my recovery.

Some Final Thoughts.

This is a section in the book…

and I will add mine.

Knowing how I felt at the beginning of my diagnosis and how hard it was to concentrate with the spectre of an 11 hour surgery ahead of me, I could not have contemplated picking this book up and reading it.

I did ask my husband though and he says it would have been ok for him to have it at that stage.

Now, as I review my reactions and responses to my cancer in over 4 years, I would have been ready by about a year in.

That was for me.

Oh, and about the red balloon on the cover. It took me a while to find out about its significance. Dr Lindsay uses the balloon the illustrate how when holding a balloon on a string, it may occasionally pop back onto you, just like the occasional anxious thinking about cancer. In other words, the thoughts do come and go but they are not there forever. Or indeed they can be batted away. No longer controlling us. 

Others may see it differently.

Thank you to Dr Lindsay and those at Chris O’Brien Lifehouse who support patients and families and carers on the psychological path of a cancer diagnosis.

Thanks too, to Exisle Publishing for the book. No payment was made to me for this review, it was the gift of the book only. I am a truth teller and this is my review.

I give my permission for Exisle Publishing and Dr Lindsay to use my words within this post.

Denyse Whelan.

Blog Disclaimer:

My stories and photos along with suggested links and websites must not be seen as medical advice.

I write this blog from my experience as a head and neck cancer patient.  Denyse Whelan. 2021.

Link Up #251

Life This Week. Link Up #251

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School Education Advice From Denyse. Retired K- 6 Principal. 99/2020.

School Education Advice From Denyse. Retired K- 6 Principal. 99/2020.

Back in 2016 I published this post after questions from other bloggers.

Given we are at the end of the school and pre-school year 2020…a most extraordinary year thanks to COVID19 and many challenging experiences for children at pre-school and school, along with the parents and carers, I decided to re-fresh this post…and it may just go some way to helping as Christmas holidays beckon.

 

How you can best help develop your kids social skills and confidence?

  • The socialisation of school is such a rich part of the journey of learning and the new separation from the family once starting school. It is a HUGE leap forward in terms of change and we can recall what it is like to start a new job, or a new course or even…maybe school..so we have more than an inkling!

 

  • I believe that children will be, in many instances, influenced by their genes, their parents’ and siblings’ modelling and their age of readiness for school’s more formal learning and socialising ways. This influence can be one of encouragement, maybe of ‘fake it till you make it’ and of over-empathising too. Children will often mirror the emotional resilience in many ways of what & who they know and what they have been like since they were born.

 

  • Before starting school is the place to begin to build the social skills and confidence with encouraging extended time away from parents. By this I mean things like play dates at others’ houses, staying overnight with trusted people such as grandparents and joining in activities such as at playgroup, pre-school, sport/gymnastics/dancing. I do not recommend it all and certainly not at once. This can start occurring at around 3 years I believe if the children have not been used to out of home care at any time.

 

  • Look to yourself with the confidence about this too. I see that kids can take on board parents’ emotions so very easily and we, the adults, need to be extra careful of our words and non-verbal actions.

 

  • I have to add one of the things I like to ‘ban’ parents saying to their children when they start school is “I will miss you so much”. Why? I have known kids who would have settled well be unable to do so because they were worried about Mummy/Daddy/Grandma is  missing them!

 

Kids in the early days and terms of school will, ideally, know how to:

  • separate from their parent(s) with relative ease after starting school.
  • look after their own physical needs – toileting, caring for belongings, getting lunch and recess food out and being able to eat independently
  • know how to listen to and respond to an adult who is not familiar to them but in a position of respect at the school
  • be able to accept some disappointments and learn how to wait for attention
  • be a confident responder to questions posed by other children and teachers
  • make eye contact ( as culturally relevant, it is not always deemed respectful) and to ensure they can engage in a conversation at an age-appropriate level
  • join in with peer and group activities at the level at which they feel confident. Not everyone is a leader but some are very quiet and active participants!

Once they are at school it is great if parents can link up with like-minded families for more socialising after school, for birthdays and more as when the parents begin to engage socially with the peers’ parents this becomes a win/win in ideal cases. Much of this has changed with COVID restrictions in force and some states are different to others.

I do not say it always works..so pick your groups or friends with care but I do know that for some families, those friendships started when their kids started school have continued!

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Moving from being a bit concerned, worried and little shy….

 

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to becoming more confident over time…

How have you managed your children’s social skills as they started school and now they are at school?

What has worked for you and the children?

Denyse.

Interesting to read the comments from 2016. I have left them there. And, opened comments for this post.

Linking up here with Leanne and friends. Probably the last Thursday link up for 2020?

 

 

 

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