Sunday 22nd September 2019

New Normal For Me With Head & Neck Cancer. 43/2019.

New Normal For Me With Head & Neck Cancer. 43/2019.

It’s occurred to me that I’ve been writing posts about how it was for me BEFORE a cancer diagnosis hereand there are the series of posts about my surgeries and progress found here….but I have not done any updates of NOW.

Now as they say in cancer circles, is the new normalwhich is described here:

Finding a ‘new normal’

Many survivors* say that cancer changes them. After treatment, they may feel different, even though they look the same. With time, survivors often find a new way of living. Many call this a “˜new normal’. It may take months or years to find a “˜new normal’.

Misconceptions about treatment  ending

  • I should be celebrating.
  • I should feel well.
  • I should be the person I was before cancer.
  • I should not need support.
  • I should feel grateful.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#xc5f7pBq7VeQ7Oeq.99

Fellow Head and Neck Cancer Survivor, Julie McCrossin AM, the inaugural Beyond Five Ambassador hosts a series of podcasts here called About Cancer.

About the word: survivor. My personal choice is this one. However, it is not always looked upon well by some. I have no word to replace it for me. I personally do not like warrior nor does thriver work for me as it does for some. It’s just me. I tend to use patient maybe because I am still getting cancer checks. To each their own, right?

Now, back to MY version of New Normal.

I have really been considering this in 2019 as it ‘felt like’ and ‘looked like’ I was back to Denyse. But which version of Denyse? I am ageing too and I wonder if some of my thoughts are also linked to being in my 70th year.

When I was in pre-cancer times, I was so ‘caught up’ with managing my stress and emotional load at having moved from Sydney and all that entailed in getting used to a new normal for that situation. Suddenly, new normal meant:

  • no longer living in a house we were paying off
  • no more employment for me
  • no more regular contact and care for our grandkids
  • being a more stressed-out person than I liked
  • trying hard (so hard) to be better able to manage the life I had then: 2015-mid 2017

Then cancer entered my life.

Very suddenly I took on a new way of looking at life, and learning what was ahead.

OK. I was stressed but in some ways I knew what was coming and even though there were unknowns, I do know NOW, I have made it through

  • diagnosis,
  • 4 surgeries,
  • recovery times,
  • many prosthodontist visits and treatments,
  • adjusting to life with less ‘in my mouth’ to help me eat,
  • then getting more in my mouth to help me eat…
  • and bingo, the smile is back so…
  • back to normal, right?

OH no, so not true. For me at all.

Partly it was my belief I could be back to eating what I used to eat.

I even bought these foods after not buying anything crunchy for well over a year and they disappointed me greatly. Perhaps, for the chips, a good thing.

However, some of this is true but more is not.

I can only crunch and chew for so long.

It is almost a year since the last surgery inside my mouth to add more skin to the inside of my upper lip and around the top ‘jaw’ abutments. I got my upper prosthesis screwed in on 21 August 2018 and it has been removed only once for adjustment by the prosthodontist. I do upkeep: two routines daily, involving 4 steps using this:

In being totally honest with myself, I can say I need to remember more than anyone that I have changed because of cancer in my mouth.

Head and Neck cancer never really leaves us. This is the reason for Beyond Five where I am now an Ambassador. This site helps patients, carers, families and friends with ‘the years after cancer’s 5 year checks are up’.

Announcement of My Ambassador Role.

It’s stays as it affects our inside and outside areas of the neck, head and inside the mouth, cheeks, sinuses and down into the throat and more. In my case, it is all in the mouth. I was told pre-big surgery, no-one would know you have had cancer or surgery once this is all done, and that is true. In some ways, that is a reason why it is up to ME to manage my new ways of eating rather than expect, as I look normal, others will be able to guess what I need.

This comes home to me even as I can still struggle to eat a meal I have prepared. It takes a long time to eat and sometimes, I just divide it into 2 meals as it tires my new mouth and makes it sore.

This is what I know is my new normal.

  • I get myself up each day between 8 and 8.30 a.m. to eat a nutritious breakfast or weetbix or cereal with fruit/yoghurt and milk
  • I take time to eat as it takes time and as I am retired, I get to enjoy reading the morning paper that’s been home-delivered
  • I will do any minor household chores which are shared with my also-retired husband e.g. a load of washing is put on the line
  • I check my emails, my blog (I have a blog which posts a new post 3 days a week) and any social media
  • Time to get dressed for the day. In October 2017, following the first major surgery I had lost a lot of weight and enjoyed the fact that I needed to buy new clothes. As a previously very overweight person, this was F U N
  • However, I found this to be a new normal for me called #dresswithpurpose and I joined in #everydaystyle for around a year and what a great community of support surrounded me post-cancer. I had no top teeth but as my husband said “I smiled with my eyes”.

Dress With Purpose photos: 2017 into 2018.

  • Each day, after a photo taken by my husband, I venture out for a coffee (and now more often, a treat to eat) somewhere local or more distant. I love this part of my new normal.
  • I have my coffee, I take out my mini journal kit, and draw/write and I people watch.
  • Sometimes I browse if I am at the shops, other times I may be out in nature and enjoy that too.
  • I have my own car which helps me be independent and drive myself to all of my Sydney appointments.
  • After this it is closer to the middle of the day and I come home when I am ready and get my very crunchy lunch ready. It is a joy to crunch.
  • More reading after lunch and sometimes more work/play via the computer.
  • Some outside chores including nurturing the plants that gives me further purpose in cancer recovery
  • Then it is meal preparation or simply getting small frozen version of an earlier meal from the freezer. Batch cooking is the way I go: meat meals made with mince, lamb shanks, beef slow cooked and of course teensy cakes for treats. I love them too.

Now I know this about my new normal.

I need to appreciate this new normal and the state of health I am in. So far, almost 2 years since diagnosis, there has been no return of cancer. I have the best health professionals looking after me and I am grateful eternally for them, their skills and their care.

I will continue to learn more about myself as I both age, and get used to ‘what’s inside my mouth’. I do know that pain comes and goes. I also am reassured that my mouth continues to be healthy inside and I am caring for it well.

I do not have any mobility problems with my right leg even though the fibula was removed for my new jaw. Thanks too for the skin and flesh, right leg!

I am loved and cared for by many as I do of them. This is a very good way to live.

In my 70th year I continue to enjoy creating with art, meeting up with friends for coffee rather than a meal, travelling to other cities by car for events and entertaining our family, along with continuing my engagement with school education, and promoting more about the awareness of this rare, but not nice, cancer called Head and Neck Cancer.

My new normal is awesome.

Denyse.

This post is being shared on link ups here, on Wednesday and  here on Thursday.

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On Being Human. 30/2019.

On Being Human. 30/2019.

It’s the strangest thing, this being human.

One day we think we have this dealing with life sorted….

Then….one thing or many may change that so-called certainty.

The book by Leigh Sales: Any Ordinary Day seeks to explain and find out more about this life of ours.

Buddhist nun, Pema Chodron, and her many books and teachings are in my library now.

I had this book beside my bed and read one chapter a night before I knew I had cancer.

This excerpt is from chapter 14.

According to the Buddha, the lives of all beings are marked by three characteristics: impermanence, egolessness, and suffering or dissatisfaction. Recognising these qualities to be real and true in our own experience helps us to relax with things as they are.

The first mark is impermanence. That nothing is static or fixed, that all is fleeting and changing, is the first mark of existence. We don’t have to be mystics or physicists to know this. Yet at the level of personal experience, we resist this basic fact.

It means life isn’t always going to go our way. It means there’s loss as well as gain. And we don’t like that.

We know that all is impermanent; we know that everything wears out. Although we can buy this truth intellectually, emotionally we have a deep-rooted aversion to it.

 

Are we ever certain of anything, really?

No, just the next breath in and then out we learn.

This has been attributed to the Dalai Lama…..

“Man surprised me most about humanity. Because he sacrifices his health in order to make money.
Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived.”

 

 

The time is NOW. This is all we have.

https://steemit.com/psychology/@keysa/the-power-of-now-the-book-from-eckhart-tolle-that-changed-my-life-a-talk-about-the-ego-of-man-the-future-destructive-thoughts

So many of us, and I put my hand up here, have thought we CAN control what is going on for us in life.

As those who are wisest say, the only thing that IS certain is uncertainty.

But in saying this, there is a kindness too. In this poem attributed to Rumi, I have found comfort in the words during my tougher times of stress, anxiety and of course, recovering from cancer.

The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honourably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

— Jalaluddin Rumi, translation by Coleman Barks (The Essential Rumi)

Finally, something from a recent newspaper clipping. I sometimes do  not agree with Michal Leunig’s words, but this time, for me, he has nailed it.

On Being Human is what we can, be and do each day (and night) to remain well in body and mind. Whilst this can be tough, each of us probably already has some ideas and practices which work. These are those for me:

This is another post, written with self-care in mind and also to relate to the theme of bring mindfulness and more ‘zen’ into our lives.
I hope there is something helpful for you here too.

Tell me more about what your thoughts are “on being human”.

Denyse.

Linking with Min who blogs here for Zen Tips Tuesday. Her guest writers come from all over the world and provide unique and helpful perspectives.

 

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My Worst Purchase. 6/51. #LifeThisWeek. 14/2019.

My Worst Purchase. 6/51. #LifeThisWeek. 14/2019.

Like most humans who buy anything, there are regrets post-purchase. Sometimes the regrets can be turned into a good choice with the options of re-selling, returning it, gifting, or learning to LIKE it.

In this case of my worst purchase it was something that I could DO something about but it was to come at a BIG cost.

The back story.

After long and faithful service to me and my family – grandkids especially – over 7 years it was time to sell my much loved Blue Avensis (7 seats were awesome with grandkids) and upgrade to a new car.

There is more.

We had finally sold our house by early 2015 and once the mortgage was paid out, we both needed new and reliable vehicles for our next stage of life: retirement and around 2 hours drive from Sydney. We could pay cash for the new cars.

My husband’s choice turned out to be just about spot-on – a Nissan Pathfinder – although he now says he wishes he had not chosen to white one. His car for driving always needs to be big – he is tall- but comfortable enough for his many weary bones and more. It also can serve as a tradie’s vehicle for when he is doing some work at others’ houses.

The middle part of the story.

When we were selecting his car, I too had my attention drawn to a car I loved the look of and the options it had. It was a red Nissan X-Trail. But then, adding the costs together “I” decided that amount of money on 2 vehicles would detract from the savings goal toward a new house one day.

I then went on to the familiar Toyota dealer who had sold me my 3 previous cars, and asked for a trade-in on my Avensis on a Toyota Corolla. Red. Of course. But also much less changeover cost too. I arranged to pick it up at the end of January when I was back in Sydney for an appointment.

The new car.

I did the changeover on the Friday afternoon, went to pick my new glasses up and began the drive back up the M1 after battling Sydney’s traffic. I love(d) my former Corollas. They were ideal for my city-driving days. But after having a vehicle with a higher position for driving and great all-round vision like the Avensis, my decision was one I was already regretting.

The real test came for me on the M1. I drive safely but well and am not a fear-filled driver in these conditions at all but this new car of mine was slow to take up the hills, and had nothing like what I knew I needed for my regular driving on the M1.

Regret – big time.

It is an awful feeling to know you have made a mistake and even more when you know that it has cost a lot of money. Yet, over that weekend, my husband who is both caring and generous, decided that it was not “on” to keep this car if it was not going to work for me. I was grateful of course but also aware of how much this might cost us. And it did.

Trade-Ins and Devaluations.

The saying that once you drive the car out of the showroom is loses so many thousands of dollars is true.

We knew it would be a cost to us for the trade-in of a NEW since three days previous car to one I really wanted and would love driving.

So, we spent a morning with the local dealer on the Central Coast and eventually an agreement was made.

They took my red Corolla and swapped it for a red Nissan X-trail at no cost  for a difference that still makes my eyes water and heart sink…well not as much as it did. But still it was in the 10s of thousands. Yikes.

Regret becomes delight.

My new car was changed to my next new car and I have not stopped smiling nor talking or writing about how much this car of mine means to me. This car is often my only companion on my many trips to Sydney and I love all part of her performance.

Then I hurt my red car!

It made me sad recently when I had a ‘run-in’ with those yellow bollards at Westmead after ignoring the warning beeps. I was distracted after a long and stressful time with the prosthodontist and just wanted to get home . It was me at the end of a very long process of three months WAITING for my mouth to be teeth ready. I look at this photo and know how I was feeling. Bad about the car but oh so over it about the mouth reconstruction!

Anyway, we finally had her repaired last week and my 5 days in a rental white SUV  made me even more grateful when I got back into her on Friday and drove home.

Worst Purchase and Its Lesson.

I have learned that I cannot make a decision like a car (or a house in the future)  based only on common-sense and finance as there has to also be something of my heart and emotions for it to be fully something I can embrace.

What is your worst purchase?

Denyse.

 

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Next Week’s Optional Prompt: 7/51. Self-Care: Share Your Story. #1. 18/2/19.

 

 

 

 

 

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