Friday 18th October 2019

My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

Spring is here.

In Australia and the rest of the Southern Hemisphere. I am glad to have cool-ish evenings and lovely days but, I know from experience, the lengthening of days will bring more heat and then I will be complaining a bit as I can when the heat is on!

True to my word of needing AND wanting to get out and about I ventured to the local beach nearest to us on Friday only to find it closed off due to sand erosion (climate change, anyone??) so I took another way, up the hill then  down to arrive at the sand and gentle waves. Cold water but worth it for the paddle.

Head and Neck Cancer Check.

When head and neck cancer arrives in your life, you are taken into new and different worlds. Fortunately my ventures have been to improve my life’s quality, living with a rare cancer, and meeting many professionals who have contributed to my well-being since my diagnosis on 17 May 2017.

On Tuesday 17 September, a very rainy day, I drove to Westmead Oral Sciences for my 38th treatment with my prosthodontist and he could not have been more pleased with how well I am maintaining the skin (grafted) around the abutments (added implants to my ‘jaw from my leg’) and we both cheered when I told him I am for the most part pain free in the area that had been bothering me for months. Yay.

On Tuesday 24 September, this time on a sunny day, I arrived at Chris O’Brien Lifehouse carrying cards of appreciation and little cupcake packs for my professional team. These people have cared for and about me for over 2 years now and my relationship is close and warm as they are when they note my progress. I enjoyed a catch-up with Nadia from Beyond Five with a coffee as well, and then to Clinic on 2nd level for my cancer check. First seen by Cate, and then Jonathan and the consensus was I am doing so well, no return till early March 2020. As I finished up, I asked Jonathan how I was going in recovery and his words made me smile:  “Denyse, you are our poster girl in recovery”. I left feeling very well indeed. And the cupcakes and cards were appreciated.

There’s More To Life Than Cancer.

I could not be more appreciative of how well my cancer recovery is going and as a result, I am expanding my world and re-connecting where I could not before as recovery, treatments, resting, driving to and from Sydney took their toll.

On Tuesday, after being to my head and neck check up, I drove out to North Kellyville P.S. to see the granddaughter’s school’s inaugural Art Exhibition. What a joy it was to be there and I couldn’t resist this photo. It actually summed up just how well I felt that day!

Gratitude – for my connections found through having head and neck cancer.

And then this happened.

Those of you who have been reading my head and neck cancer posts (see here for access) will know I have NEVER found another person with cancer “like mine”. My professor had told me I was “rare of rare” in terms of risk factors and so I kind of learned to understand that was it. Until I was contacted, firstly by a mother, then by her son. This man is another head and neck cancer patient. They had found my story on the Beyond Five site after his diagnosis in 2018. It turned out, once I was contacted, he was not only living in Sydney but we shared the same professional surgical team, the same comprehensive cancer hospital and he also attended Westmead Oral Sciences.

This person, who is quite happy to be found on instagram here, has a more complex and serious version of head and neck cancer than mine. He and I connected via social media and then personally when we got together for a coffee at a place a bit up the coast for him, and down the coast for me.

Our talking and sharing was so good. I know for me, re-telling some of my story was good but I think, for him listening to the ways in which recovery occurred for me may have helped. Nevertheless he has a way to go right now and I am full of admiration for his attitude and his patience. We are both very keen to continue to spread the head and neck cancer message.

Thank you Fergus!

Time for change. Transitions. 

I’ve written before about the transitions in my life (retirement, leaving Sydney, family etc) before and I am now, 2 years 4 months post head and neck cancer diagnosis recognising a shift in my emotions, signalling change. Even good change has its downside. I am a little more emotional as I consider how far I have come. I am also feeling the feels about ageing…and turning 70 in 2 months. Our twosome relationship in our marriage continues to be strong as we navigate life at ‘this end’ together. Family is less connected to us now as caring is no longer required and they are all just about grown up.

It’s of great interest to me to know how quickly the changes occur. Sometimes we may blink and miss them. On the weekend, our daughter and 3 of her children came for Saturday lunch. We even managed some fun games outside. I admit “we” the oldies got tired very quickly. We also did a a bit of a nostalgic look at one’s growing up years. She will be 23 later this year Yikes! Where is that time thing going? Nevertheless, my afternoon’s phone call from my 96-next-January-Dad reminded me we are all going OK.

How is Spring going for you?

Had you heard about head and neck cancer before my diagnosis?

Denyse.

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What’s in a word? Cancer. 2017.82.

What’s in a word? Cancer. 2017.82.

Since I heard the word, cancer, to describe what had been found via pathology from the biopsied tissue from my gums, I have seen it and heard it everywhere. However, I think, it’s like when I  first become pregnant, I saw other pregnant women everywhere.

It’s more noticeable because it affects ME. So, whilst there is still no word (ha!) on the exact  date for my cancer surgery, I thought it timely to write a post.

I have been incredibly well-supported already by those in my friendship realm here in the blogging world and elsewhere.

Each has been from someone who has had cancer, knows someone with cancer, and is currently being treated for cancer.

I read recently  that 1 in 2 of us will have cancer. Wow!

My family of course have expressed their concern and care for me. I have been visited by almost all of the immediate family and that has been lovely. What I have found too is the outstretching of hands (figuratively) of so many is helpful and reassuring which is why I blog about it.

Here’s what I wanted to share briefly:

I had been on a roller-coaster of emotions ANYWAY before I was diagnosed with cancer, so to add cancer to the mix has raised those anxious thoughts of mine to greater levels. But, I am thankful that I was already doing much to help myself with anxiety and adjusting to our new way of life. Meditation, being more mindful, walking, being outdoors, blogging, enjoying some Netflix with my husband, going to the beach, taking photos, supportive health professionals  and generally engaging on social media are already integrated into my life. So, they have become tools for managing my thoughts about cancer too. 

Thank you to the many people who have sent me messages, cards and let me know that I am in their prayers, thoughts and hearts.

“We are all just walking each other home” Ram Dass.

It is very humbling to have such a lovely group of you with me.

Most of all, I thank my husband who is already my finest supporter and rock! He will be with me as much as he can within the first days in hospital and I know, not matter what state of grogginess I may be in, he will be within arms reach for me. That IS love. I am so lucky.

Thank you everyone. I hope that if the word ‘cancer’ is part of your world by association or for you that you too will be cared for and about like I have been. I am blessed. This image is one I am using when I need to take myself to a more enjoyable mindful place. Enjoy!

I am grateful every day.

UPDATED: About my present state of health. 

When I wrote this post I thought I was managing myself quite well. Since then, I have had some pretty horrid days (and nights) where I have become fearful, panicked, and so vulnerable I wanted to go into a corner and hide and never come out.

I am shit-scared right now.

I am worried about losing what I valued: my mouth where I speak, eat, share my emotions and smile. It has been days of crying uncontrollably, being held until I calm down (thank you dear B) and taking some valium (which I don’t really want to) and letting out the fears  in words between the sobs. 

I fear: the loss of ability to use my mouth for at least 7-10 days, have a naso-gastric feeding tube down my throat for those days, having the skin/flesh/bone from my right leg inside my mouth after 3/4 of my upper jaw/palate as been removed. Dealing with the not being in control.

I am, as I write, unable to really express what it means to be facing this loss of control of my body. I will be in ICU to start and may even have a tracheostomy to start if the mouth is too swollen. This is very scary to me, and I am admitting it now.

For me to admit how vulnerable I feel right now is to say “I cannot do this without help”. My husband reassures me he will be there as much as possible, and given how I will look and be, he will be my only visitor until I give any indication I can see others. I am facing the unknown and that as we know is the scariest place to be. I will be losing my smile….for more than a while. Possible 3-4 months until my upper jaw recovers.

Have you faced major surgery of any kind for cancer and other reasons?

How did you deal with it?

I am so wanting some answers that help me know – in the pre-surgery phase that I am not alone in my fears. 

Thank you for reading this far! I appreciate that very much.

Denyse.

Joining Kylie Purtell here for I Blog On Tuesdays link up.

Linking here on Thursday with Leanne and friends for Lovin’ Life.

 

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