Monday 20th September 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.

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Comments

  1. So very deep and profound. Wow, thanks for sharing all of this. Thanks for hosting and I hope that you have a wonderful week.

  2. This book seems comprehensive and would be an excellent resource for cancer patients and their support people. Thank you, Denyse, for sharing this valuable information and your book review. Have a great week! #lifethisweek

    • Denyse Whelan says:

      Thanks so much Natalie.

      Initially I didn’t think I would get much out of it because of the time gap since diagnosis and reading it. However, there was good information that helped me understand my processing with greater clarity from a psychological point of view.

      Denyse.

  3. This book sounds like a really useful resource! I can relate to often feeling too overwhelmed when facing health issues to ask the right questions.

    • Denyse Whelan says:

      Yes it is overwhelming isn’t it, Astrid?

      It has happened to me and members of my family and this is why to good advice is to take someone with you for appointments.

      Thank you.

      Denyse.

  4. There must be so many questions that you don’t even think to ask when in shock or in the middle of it. It’s great that there’s a resource like this out there.

    • Denyse Whelan says:

      Exactly true!

      In fact it might have even been advice from Sammie to take a little notebook with questions and to write down responses from the team.

      I did this for my subsequent consultations and filled one and started another. I still have them.

      That first appointment B and I remembered different things from it but it was me who had the many questions as time went by and my kind A/Prof was happy to respond.

      Thanks Jo.

      Denyse.

  5. As we are learning with COVID, our messaging on health issues and the way we talk about them are often wrong. I was talking to a hospital doctor and they’ve had an explosion of covid in staff because they are all super careful around patients (as is drummed into them) and then they go for lunch together in the break room – and they’ve all caught it from each other (how is this going to work at schools??) So we grew up thinking you get cancer because you did X too much when really, it just happens. Which is why the non smoker gets lung cancer and you get melanoma on the souls of your feet and between your toes. We need to change the conversation And yes, alwaysask questions. Good post.

    • Denyse Whelan says:

      Thanks for your supportive words and comment.

      In the ‘olden’ days many people felt (and maybe still do) that they caused their cancer.

      I know, my dentist told me in the many months before my diagnosis that with my stress levels being high (anxious, going through the transition to retirement) that can affect our immune systems.

      I remember feeling like I had “caused my illness, which was a very sort mouth”…however, I now take comfort in the quote from the doctor from twitter…things change in our systems and we don’t make that happen.

      Denyse.

  6. I think you’re amazing and have a really great attitude Denyse. This book sounds like a perfect resource for cancer sufferers. When I have questions I like to go to a book for the answers. Another profound and meaningful post.

    • Denyse Whelan says:

      Thank you so much Jennifer.

      You’ve been reading my words for a long tikme now and so much of my attitude has come from a building inner strength and a better way of dealing with the things I wanted to avoid back in my before cancer days.

      Yes to finding answers but not via Dr Google. I did do that a couple of times and my problem was the cancer that was in my mouth was being written about in medical jargon and I think that made me worse. I learned then to stop researching.

      Denyse.

  7. I could not read a lot of info about cancer when I got my diagnosis. In fact I vowed that I would never google my specific type of breast cancer and I never have. Probably a bit of a head in the sand approach but that’s how I coped. Having said that it really does sound like a great resource for those who have all the questions.

    • Denyse Whelan says:

      Well done you…for blogging again AND knowing yourself so well, that you did your cancer the way it was best for you.

      I think we all do it differently and no-one needs to tell us differently.

      I am a talker and a doer so I needed to know and to have action plans. BUT that is where it stopped. When I realised my skills were in teaching, theirs in surgery for head and neck cancer and I respected their differences by telling myself “they wouldn’t know how to teach Kinders to read”.

      The book is a useful resource and for some people probably a great guide. I couldn’t have understood much of it in my first months.

      Time is so important even though it seems to stop whilst in treatment and all that waiting for results.

      You have done so well Ness!

      Denyse.

  8. I think I need to read this book – wish I’d got my hands on it when I was diagnosed/having treatment because reading your review, I can totally relate! One of my biggest tip to anyone who has a cancer diagnosis is to ask ALL the questions and most importantly, ask your medical team – that’s what they’re there for. I think one of the biggest mistakes people make is consulting Google rather than their own doctor. While I think Google has it’s place with medical research and treatments, I always think it’s best and fair to the professionals to allow them to ask your doctor first because they know you, their patient and your individual case the best. Great post and a fab review, Denyse! Once again, thanks for hosting!

    • Denyse Whelan says:

      Thank you Sammie. Interesting to find you think you would read it now. I agree, even post cancer it went a long way to helping me understand some of the ways I have felt about my cancer in the last year in particular.

      It raises really good points for the post cancer times too and has lots of insight into how carers might manage.

      It was you I am pretty sure, who advised taking a little notebook to appointments once I had that first one. Of course ask the questions and have another adult there too because B remembered some things better than me.

      Always a pleasure to host.

      Denyse.

  9. I wonder if we have that book at work. It is something we work with and a lot of our focus in counselling is grief and loss from cancer (through death or even the loss of ‘normal’), and also about finding meaning and purpose. I agree about asking all the questions and there is no such thing as a stupid question especially when health is involved. Thanks for sharing a great post Denyse.

    • Denyse Whelan says:

      If you don’t have it, Sanch, then it would be a good resource. Also it’s very current and written in language that is very inclusive.

      I am not sure if the book is sold in bookstores or via Exisle Publications themselves.

      There ARE no silly questions…that is why I wrote it too because some people can find asking questions hard because they don’t want to be shown up as not knowing.

      I had the trick of telling myself that to trust my team to do all things well because that was what they are trained to do as I am trained to teach and they couldn’t help Kinders learn to read.

      Cheers
      Denyse

  10. So many questions Denyse and your responses are honest and real. Thank you for always being so positive and helpful, as i know it would not have been an easy road at the the time or even sometimes now. You are so good at reflecting and that book sounds ideal for someone close to me who is going through these early days of diagnosis and surgery before moving onto treatment.. I might wait a while but will intend to get it at some stage. Thanks again.

    • Denyse Whelan says:

      Thanks for your words of confidence and kindness, Deb. I have learned so much more about my inner strength thanks to this cancer thing.

      I am so sorry to read about that person in your life. It’s tough alright and being separated via Covid right now is very scary.

      Taking care of you, as you try to be there for another is something to consider too.

      Sending my best to you all
      Denyse.

  11. Hi Denyse, I always ask a lot of questions too, particularly when it is about my health issues. Even if the answer is not one that I want to hear. Some doctors are very receptive but I have a new specialist this year who seems to be irritated by my questions. I nearly stopped going to her because that’s not a good professional relationship. Most of my doctors are open to the fact that, as a nurse, I need to know things that are more in depth than other people.
    I have found that people who are diagnosed with a genetic mutation ask pretty much the same questions at the beginning. Hence the main reason I started my podcast. I knew I could answer all the questions I see time and time again in support groups online.
    Keep asking questions Denyse – it’s the best way to be in control of your own health,
    Regards Christina

    • Denyse Whelan says:

      Wow, Christina, do you think other health professionals are threatened by someone like yourself with both the personal experience and the knowledge. Threatened maybe?

      I hope you can make a different to her attitude or find another person.

      Caring health professionals make the world of difference in our care but without mutual respect I wonder…..

      I know that my professional team would say I teach them more about the HNC surgeries becase of how I report my progress and symptoms.

      I never stop asking but I also have to rein in what I can work out for myself about my psychological progress because it’s good.

      Take care,

      Denyse

  12. You are an amazing lady Denyse! I know I say that often here, but I really mean it.
    I have read no books about cancer. It is a subject that I avoid really. I guess I am just experiencing it and leaving it at that. I don’t even remember what kind of breast cancer I had initially. I had a massive pile of Drs’, oncology reports and documents, brochures etc on the subject of breast cancer. I threw the entire lot away! I have never looked back and thought, “I shouldn’t have done that.”
    I tend to forget that I have terminal cancer until someone reminds me at the 3 weekly chemo. xx

    • Denyse Whelan says:

      You are the ultimate trouper Jody and I admire this quality in you.

      You get on with what you have to do.

      Each of us sure is wired differently to manage a cancer diagnosis.

      I admit it took me about a year to look at some of my reports. I asked for them and wanted the records but I found the words, the numbers and the whole story confronting. Still glad I have them but I won’t look again.

      I am so sorry that now you are doing the next parts of treatment without your Mum and your Husband.

      Sending all love and the best for next chemo.

      Denyse

  13. Hi Denyse – I think it’s really good to ask questions – but so true that we often don’t know what to ask – especially at the beginning of a journey into the unknown. I think that’s why a lot of people who get a cancer diagnosis take an advocate with them – someone with a clear head who can ask and then remember the answers! I think writing questions down as they occur to us is a good idea too – rather than sitting in a surgeon’s office and trying to remember what we wanted to ask!

    • Denyse Whelan says:

      Yes to this Leanne. Having a little notebook and pen in my bag at each visit once I had my first surgery helped. It gave me and B a chance to check in with each other of what we understood was said.

      I still find it confusing to envisage how my mouth was reconstructed and even though I feel it all, I really cannot see it because of where it all is. A challenge but not unsurmountable as B, my GP and Dentist check it out if asked. My dentist is ace at 6 montly mouth checks. We hope all dentists do this now. Often they see what we cannot even feel.

      Thanks for your understanding too.

      Denyse

  14. What a fabulous resource Denyse! I can’t imagine how overwhelming and scary it would be to have a cancer diagnosis. There would be so many questions and so much you wouldn’t yet know that you need to know. To have a resource to help navigate your way through would be priceless. Thank you for bringing this book to our attention! xo

    • Denyse Whelan says:

      Thanks Min.

      I often used to think “I don’t know how I could cope if….” and then I got cancer. I did get upset more because it had been a mystery for so long…then what I wanted was to know it was gone.

      Of course I cannot get that reassurance but what I have had, from my surgeon and prosthodontist is that all looks well and I have not found anything new either…so as I get ready to visit my surgeon in September (even with lockdown he is seeing patients..you cant look inside a mouth via telehealth without major implements…

      I learned a few things from the book about my psychological reactions and thoughts too and that was helpful.

      Denyse.

  15. Hi Denyse, a great resource for cancer patients and their families I’m sure. I remember when my Mum and Dad were both diagnosed with cancer. Back in the late 70s earl 80s there wasn’t much information around and this book would have been very useful. I also agree that there is no such thing as a silly question. I used to be afraid of asking questions but not any more. Thanks for #lifethisweek and also introducing the book. x

    • Denyse Whelan says:

      Oh Sue my heart goes out to you with the memories of your parents both having cancer. And so much has happened since those years for better treatments and likely better outcomes for life.

      This book’s value is that a patient and a carer have things to read to help them both understand the cancer ‘journey’ as they say.

      Thank you for your kind words.

      Denyse.

  16. Quite exhaustive information. Good post!

  17. I’ve heard about the blame associated with lung cancer but not other types too. Interesting thoughts.

    • Yes that’s one for sure Vanessa.

      I also know that some of us with cancer in our mouths have “looked to blame” our dental hygiene etc” but with that quote from the head and neck surgeon, it was explained so well, I took comfort from it.

      There are so many “if you eat the right foods, do this type of exercise” people trying to “prevent” you getting cancer and other illnesses that you couild see how some people would blame themselves.

      The thing I try to do now with my head and neck cancer awareness is to increase others’ knowledge base and raise matters that might be of concern with their GP/dentist/specialist. It takes some educating though and it’s not easy because my cancer, for example, was initially seen as candida.

      Denyse.

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