Monday 20th September 2021

Archives for Monday 2nd August 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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