Tuesday 20th August 2019

One Year After My Major Cancer Surgery. 2018.59.

One Year After My Major Cancer Surgery. 2018.59.

This space, Denyse Whelan Blogs, has been a life raft to the outside world and a connection from me to you, the readers and fellow bloggers. I am aware that since my first May post “I have Cancer” there have been a significant number of posts about this cancer and me.

In reaching the 1st year anniversary of the major mouth surgery on 6 July 2017 last Friday, 6th July, I decided that whilst there will be occasional updates, there will be a general easing away from the focus as I get to look forward to a broader life view.

However, I cannot predict when that will be, as a year ago I might have been given the impression that my recovery, i.e. surgeries and healing to gum and jaw readiness for implanted teeth might be 8-9 months. I am in my 13th month now. My mouth has needed a 4th surgery and a second skin graft taken to enable the lip the be more prominent and for there to be enough space for teeth to go in. THIS is why I am on a drive every.single.week until mid August so that my excellent prosthodontist can do the best first stage of teeth for me. Implants remain much further away.

I wanted to do a snapshot of how it has been for me as I have recovered and some of the ways in which I have been able to adapt and adjust to life with no teeth on top, 8 on the bottom, and a skin graft inside my mouth, along with a bone made into a jaw.

Life went on…after hospital but I needed to adjust significantly to home life as I was restricted with movement: a boot on the leg where the surgeons had removed my fibula and skin/flesh for my mouth. I also could eat with difficulty and there were some tears via trial and error. Over time I learned how to better cater for myself after sending my husband on early day missions for soft foods like jellies and mousse. I admit I still find the eating restrictions hard but do what I can to keep up nourishment as I need protein each day and some iron-rich foods. Since late last year I started cooking mini-meals and freezing them.

I am not someone to sit around for long and once I could drive, 6 weeks after surgery, I set out for small drives to be used to both managing the car, and that I was stable on my feet when I got out. I soon re-engaged with shopping. Even though I had not enjoyed shopping before the surgery (I was anxious and I was not interested in clothes or books or even browsing) I found my shopping mojo again when I knew I needed a focus for each day. Along with the enjoyment I have always had for being near the beach or finding places to photograph, going out every day became must-do for my emotional health. I dressed well, had a photo taken and went out to chat with people I met and have a coffee and do some art.

For the first part of 2018, being holidays everywhere, I waited out the time before planned third surgery in February by distraction, activity and going to the beach as well as out for coffee. I had also had a second surgery in November 2017. It was always hoped that the February one would be my last or maybe that was just me??

The February surgery saw my mouth healing well and the prosthodontists took my stent off. This was short-lived (darn it) because my surgeon wanted it back on. Alas, the reason it was needed was the area between my upper lip and jaw was very tight and in fact left no room at all for the addition of teeth. I found out, much to my disappointment that a 4th surgery, and skin graft to make the inside of the mouth even roomier would be on in mid May.

This is where I am at now, almost 8 weeks from that time. The stent is doing the job. It has been mighty sore and uncomfortable at time but my fortnightly, now weekly visits to the prosthodontist at Westmead sees this being removed, trimmed and re-fitted. It can take over 2 hours. Nevertheless I am a very co-operative patient and I want it to work too. Over the coming month and more I will be at Westmead for longer visits and with luck on our side, the first fitting of a set of false teeth for the upper gums.

Thank you if you have read this far.

I was of two minds about posting this. I said to my husband “I am sick of my posts about cancer and recovery” and his comment was “then other people might be too.” However, I also decided that it was IMPORTANT to me to keep the update and to mark this occasion of ONE YEAR since the first surgery and that’s why this post is here. So much of my recovery has been, and still is, mental. It is about attitude, some courage and a willingness to see this through. I have been, at various times angry, impatient, teary, frustrated and downright “over it”.

However, I am MUCH better at picking myself up, dusting myself off and starting all over again…

Denyse.

 

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

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Learning To Deal With Uncertainty Via Cancer. 2018.28.

Learning to Deal With Uncertainty Via Cancer . 2018.28.

In the past four years I have been on such a long and hard learning experience.

Perhaps I am short-changing that time frame.

Possibly it has been since 2003 when I had to resign, for medical reasons, from my substantive role as a K-6 Principal.

However, in May 2004  I was deemed well enough to return to teaching duties only and that was fine by me because I actually missed schools!

In my working life in N.S.W. public schools from 1970 until 2010 I liked the certainty:

  • of the school day,
  • the rhythm of schools
  • and the fact that my work life was timetabled
  • and I could work knowing I had familiarity and knowledge.

I now modify the above by adding: no school day was ever the same and of course there were many uncertain times and experiences but they were all familiar and I understood them well.

In the years following my retirement from teaching in 2010 up to 2014 I decided that helping families learn more about transitioning to school would be good and set up a solo education consultancy. There was some certainty in this once I found a group of early childhood centres who were not only interested in my work, but would pay me a fee too. Win!

In 2013 I was fortunate to meet then Prime Minister Julia Gillard who thanked me for my work in education.

What changed for me and how did I HAVE to learn to deal with uncertainty?

Three major triggers during 2014 and into 2015.

  1. Deciding to sell our Sydney home of over 18 years, pay off the mortgage and other debts and move to rent a place on the Central Coast.
  2. Resign or down-grading my employment status in education: teaching at Uni, having my business and remaining as an observer for (then) NSW Teachers’ Institute.
  3. Leaving the families of our adult children and their children with whom we have loved and connected from 1996 to the present including daily child-care before they started school.

I have written about them before, but the memories of those times appear in my ‘on this day’ in Facebook and in ‘time hop’ so I see and recall them usually with a sickening thud to my gut. But then because it is NOW in 2018 and I am learning much more about how to manage uncertainty I am able to counter it!

Sign Above Where I Blog. B.Be Brave O.Optimistic L.Learning & Loving. D. Determined Denyse.

Where were we?

The rational and thinking brain does not  know why because it was logical back in 2014 and KNEW the decisions we were making to commence what felt like a proper retirement for us both were right. We needed to have no more debt. We wanted to live away from Sydney. We had been told my our family that childcare was no longer required.

The thing is, I found out in many hard ways that I had created a situation (or actually more than one) where my inner soul and feelings were in conflict with my brain choices. I spent all of 2015 trying to make sense of it and until a psychologist told me: Denyse, feelings take a lot longer to catch up with decisions and change, I felt I was doing it all wrong!

And in some ways I was.

I was ignorant of so much. I finally accepted the sadness and grief that enveloped me for that year. I actually thought things would improve for me when we moved house at the end of 2015 but it was short-lived. My brain was now on super alert setting and affected my decisions and my life. I tried medications (no, none helped) and meditation (a little bit helped) and walking and art too.

But it was not until I started learning more about the Buddhist way of living in the now, as it is all the certainty we know from teachers Pema Chodron, Jack Kornfield, Tara Brach, and Anne Lamott  more that I clicked:

OH. I cannot control anything really.

At all. I can control my responses.

A big gap was closing in my learning. My husband had been doing his level best to enlighten me but I was not ready. Or, I was obstinate and wanted proof!

So for all of 2016 I continued to ‘try’ to accept things but then I would revert to the default in my brain and work on all the ways “I” could control life. This did not make a happy Denyse even though I felt I needed to look like I had things under control. Ha! My Irritable Bowel Syndrome told me in its very special way “no you do not!”.

Into 2017 we (my brain and my feelings) went… and matters worsened. And I hated how reclusive I became. I rejected ideas of trying exposure therapy because ….no control!  It was a to and fro between head and heart (with the gut in the chorus) until matters changed dramatically.

Late March – early April 2017.

I HAD to follow through with using graded exposure therapy to get my awfully sore gums and teeth sorted. I did.

It felt a bit better and when my new local GP met me and suggested a small dose of an evening anti-depressant from the ‘old school’ which would help ‘firm up’ my IBS issues, I trusted him and gave things a go.

THEN. May 2017.

I had a biopsy, I thought something serious was wrong in my mouth post teeth/bridge extraction and I was right. Squamous Cell Carcinoma in my upper gums and away I went on the cancer journey.

WHAT DOES HAVING CANCER HAVE TO DO WITH UNCERTAINTY?

Everything for me. I had to change so much in terms of my ill-founded beliefs that I could control my life.

Nope. That was a BIG lesson.

What I did learn, and have  learned every.single.day. since May 2017 is that I need to trust those who care for me and provide their services as they know more about this cancer of mine than I ever will.

This does not mean I surrender because no-one does that without thinking. What I learned about myself is that I can get through some very tough times (I did and have) because I can let time pass, let my body heal in its way and take the advice of those who are experts in the field where I am not.

Of course I ask questions! In fact, I sent off about 20 before my huge initial surgery in July 2017 but I had a much greater sense of security in having met the Professor and Associate Professor, the Prosthodontist and the Practice Manager. No-one seemed to mind my questions and it was clear to me, that by asking I was helping myself be better prepared for not only cancer surgery but for the relative uncertainty in the life ahead.

On Thursday last…waiting for the next part of the treatment. Selfies rule, right?

And now, into almost the fourth month of 2018 I am now driving myself to the prosthodontist appointments in Westmead and managing my physical and emotional health whilst doing so…and in between visits and surgeries I am doing the best I can to stay well and do as is required for my continued health.

I am letting uncertainty into my life as a gift for what it teaches me:

patience

courage

confidence

trust

I have said, more than a few times, that this cancer diagnosis (and subsequent surgeries and treatments) has helped me get back a Denyse I really like being and a person who is more out-going (as I used to be many years ago) and one who is more loving and giving to others.

What lesson(s) in life have you learned about yourself?

Do you have any issues with surrendering control?

Tell me more in the comments if you are prepared to share!

Denyse.

Joining with three generous and sharing bloggers who host link ups:

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

Sue L and Leanne L  here who host the Midlife Share the Love Linky Party on Wednesdays.

Leanne who is the sweetest hostess here on Thursdays for Lovin’ Life.

 

 

 

 

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On Healing and Trust. 2017.118.

On Healing and Trust. 2017.118.

I preface today’s post with the news that I have not been physically well since late last week (I wrote about it here) and when I am like this my inner world becomes unsure, scared and less  confident than I like to appear and feel. This has been exacerbated about 1000times since I found I had cancer. Even the recent trip back to see the specialist has not left me feeling wonderful because I am scared again knowing I face many more visits and more invasions in my mouth. YET. I cannot stand the way it is now, as I literally cannot eat much at all and I am getting more and more frustrated by my predicament.

YOU might think, as I do in my punitive self-talk that I should be grateful the cancer has gone and be appreciative. Well, right now, I am not.

The psychologal effects of this cancer thing are overpowering when I ‘let them’ so in an effort to feel a bit less aggro and more present-moment centred I am changing some of the thought patterns.

I talked to my husband about and I think it is a grieving process but it is very uncomfortable and makes me sound unappreciative and spoiled.

But hey, I am human.

Enough from me or this will be a 100% whingefest…..and I even deplore those too.

Good news update: Since feeling wretched with a bad virus or flu from last Wednesday on I was a little bit relieved to feel a bit better yesterday physically and today the result from the doctor for flu is ‘normal’. Yay. But as I found out yesterday, Wednesday 25 Oct, this is still a ‘flu’ and the various bugs and nasties which fly around the body will leave me exhausted and unwell for about another 4-6 days. Today, Thursday 26 Oct I have woken with no temperature, continued lethargy and but an increased interested in eating again. Even though eating IS restrictive, it’s better to be hungry than not.

This is a piece from the writer Jeff Foster in his book: The Way of Rest.

Healing: Trust The Process.

Sometimes you have to commit to feeling worse in order to feel better. Sometimes you have to lose the hope of every getting better, then you start to get better. Sometimes healing involves staying very present as powerful waves of energy move in the body. Sometimes the body shakes, convulses, aches, sweats, burns as it rids itself of toxins, releases of bound-up tension.

The mind says, “I’m getting worse”. The heart knows you’re OK.

True healing is not the removal of surface symptoms, but courage and trust of the body and connection with the breath, and knowing that the symptoms may intensify before they disappear. And they may never disappear. Yet you may fall in love with yourself as you are, despite the future, and you may drop to your knees in gratitude, for you have been given another day on this precious earth.

Maybe getting worse was the best thing that ever happened to you. Because you’ve never sensed the presence of love so clearly, and your path has never been more obvious, and you have never felt so alive.

All I can say is I am hoping to shake off some of these feelings but also to accept them as being part of what is…as I have done this year, when told I had cancer.

 

It felt helpful for me to try to explain what was going on in some kind of written form here!

Denyse.

Joining with Kylie for I Blog On Tuesdays and with Leanne for Lovin’ Life Linky on Thursdays.

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