Tuesday 29th September 2020

Healthy. 39/51. #LifeThisWeek. 78/2020.

Healthy. 39/51. #LifeThisWeek. 78/2020.

When I was blogging more frequently, health and mindfulness were a category for blog posts. These days, like many, my posts are limited to twice a week.

This is good for my health in some ways as I am not feeling too much pressure to perform, aka write posts, and can enjoy the writing of the two I do more.

About Me.

  • Being healthy is a relatively new idea for me…I was raised to be healthy and was…I am talking about lifestyle & choices
  • For many years I balanced my life …in a not so good way…with eating for comfort and doing less as I was quite worn out by life
  • I knew limited ways in which to care for myself because…as many do…I was too busy caring for others: at work, and in my family life.
  • I do much much better now in the self-care and health stakes as I have learned much in my years living following head and neck cancer.

Then I Was Diagnosed With Cancer.

Those who have followed me before and since this diagnosis know that I found out I had a head and neck cancer, specifically squamous cell carcinoma of the top gums (maxilla) and under the top lip. All about that, and many more posts outlining the years of surgeries and more are here: Head and Neck Cancer.

But Before Then.

My emotional health was at an all time low from 2013 into early 2017 for a number of reasons:

  • ageing and becoming somewhat disenchanted by some of its effects
  • retirement from all of my meaningful and paid work over this time
  • my weight was the highest it had been and with encouragement from my GP and my own determination, I lost some kilos over a year with greater awareness of why I ate, and ensuring I moved more
  • finishing up grandparent care at our house and actually being glad because I was finally tiring and becoming worn out by it
  • making a move from all I knew: Sydney, our family, friends….to the Central Coast
  • this move was one I thought I wanted (and still agree it was the right move) but my emotional health brought me down into spirals of anxiety and fear along with the dreaded Irritable Bowel Syndrome
  • the health professionals I saw then all said it was reactive depression and anxiety was part of the transitioning. Not a diagnosis of either. I do take a low dose anti-depressant now to help with IBS more than anything and getting off to sleep
  • I admit I am one of what is known as the “worried well”.

SO….in some ways I was not surprised that I had cancer diagnosed in May 2017 …I can see that others may have felt stress was a cause. That it is not a direct link, but from what I know about cancer, it is random.  Some people thought my immune system was down due to the appearance of my mouth. THAT,  was actually the beginning of cancer…but no-one thought that till April 2017 when I insister my dentist remove the bridge from my upper gums.

This quote sums cancer up. From an Australian surgeon:

Head and Neck Cancer Requires Frequent Checks.

From the diagnosis on May 18 2017, to the big reconstruction surgery on July 6 2017, through to further surgeries for skin grafts and checking inside my mouth, glands in neck area and many visits to the prosthodontist, I had:

  • post-surgery checks after a few days to a few weeks to see my head and neck surgeon and his surgical assistant, nurse specialist
  • three monthly checks for the first year
  • any time where I may have seen/felt an issue, such as additional skin forming, and my surgeon saw me within weeks
  • four monthly checks for the next year
  • weekly and fortnightly visits to the prosthodontist as he continued to work on the making of the upper prosthesis
  • then monthly to two monthly visits to him, until COVID. Last time I saw him was February 2020 and I am returning in mid October as he is now doing regular checks again
  • this year, the visits to Sydney’s Chris O’Brien Lifehouse were at 6 month intervals.
  • THEN, at my recent early September visit, after clear CT scans of my head, neck and chest, and after visual examination and more, I am now on:
  • a 12 month check up..so will not be back until September 2021.

“MY” Prof…as I call him, Professor Jonathan Clark AM recently became chair of a new program at Chris O’Brien Lifehouse and Sydney University where this grant will enable him and his team create software and 3D models for head and neck surgery on the spot. My surgery, over 3 years ago, meant a delay as my team here in Australia  and the software developers in Europe made the program for my surgery and the model for my  mouth which had to be flown in from Belgium. Here’s the announcement of the donation for the funding so this program goes ahead.

ALWAYS happy to have a photo….

How I Manage My Health Now.

Interestingly with greater ease, thanks to a limited ability to eat a lot and to a better attitude to moving more.

Photos tell that story too. It is a way of keeping myself accountable too.

However, I never feel that I am missing out either. I have a better understanding of my need to nourish this body and to also enjoy the treats when I can.

And Then I Had to Do These Things.

Have both of my eyes’ cataracts removed and lens replaced. This happened on the cusp of COVID restrictions and I was glad to be done. In Sydney, over 3 days. Then of course, I had recovery but my opthalmologist has rooms up here so visits for checks were OK. I was quite shocked that from one annual visit to the next, it was cataracts time. This turning 70 was not quite what I thought. Now 6 months on, I use readers of a lower strength and no glasses for driving. Love the clearer views everywhere.

Left Eye Cataract Done

After hiding FROM myself and my problems with rectal prolapse* and the ways in which it impacted my day to day life, in May 2020, I was forced to face the matter as I could no longer live in pretend land. I look at it this way though, in managing my recoveries – physical and emotional – from those years of head and neck cancer I could not face more investigations into what is wrong. But dear readers, there was a lot wrong. Google rectal prolapse and what it means. Let’s just say, I paid a small fortune for incontinence aids, and suffered a great deal from shame about this condition.

Grateful to be ‘out of’ another surgery.

Getting One of the Things* Above Fixed…and Added Complications. 

Again COVID changed a few things but from my GP’s referral to a colorectal surgeon who insisted on a colonoscopy “no cancer or polyps but def need rectal prolapse repair”…and then needed surgery I became resigned to what needed to be done. From early May to late July I waited for the  surgery called rectopexi. The surgeon did a great job, especially complicated by my inners where he also found (surprise) a hernia needing repair. This necessitated a horizontal incision AND, the best (not) news, a vertical incision. Meeting in an upside down T at the bottom of my abdomen. The surgery, has worked. He took the slack inner workings of my rectum and has stitched them to a bone low in my back. I have no prolapse and normal (for me) bowel movements for the….first time in perhaps a decade…and…

My recovery in hospital and at home was slow as expected but at my first post-op appointment he told me I was a star for recovering in exactly the way it was best. I liked that. Especially as I did not quite hit it off with him at my initial consult…I was scared.

Three weeks into post-surgery recovery I noticed a section of the upside T section of the wound was kind of not staying together. I showed my GP and he thought it would be OK. But take this anti-biotic and apply this cream…and let’s hope it resolves.

It did not.

Within 2 weeks of seeing my GP, I was ‘astonished to see and feel liquid forming over my nightie as I got up out of my chair. Eeek. Got an urgent appointment to the GP, who was ‘so sorry, Denyse’ but…It was called wound dehiscence and sometimes a wound will not stay together. My colorectal surgeon saw me the next day, and pronounced “can fix, back into hospital for wound debridement and we will put a VAC system on to help heal the wound over less time.”

Wound Debridement and the VAC. 

One month post first surgery for rectopexi I was back in the same hospital and cared for very well. Surgery was less than an hour. I stayed overnight so the surgeon and wound nurse could see I understood how to live with the VAC system. The best part of having paid for our private health insurance since the late 1960s it means either of us can get the best care, when and where we can. I know this is a two-part health system in Australia but I am very grateful.

Each week I was visited two days a week by the Wound Nurse. This was all covered under ‘Hospital at Home” care from our Teachers Health Program. A machine was supplied, each of the changes of dressings and the costs of visits from the Wound Nurse. This lasted just over 3 weeks.

Since then, our GP and his practice nurse is taking care of my wound dressing. The progress is amazing on the wound. I have so many photos, none of which I will add here but they give me and my husband (the photographer) updates. The medical and surgical teams appreciate my dated photo collages.

Is that IT?

I don’t know but I sure would like to be free of appointments for  the above. This is likely to occur in the next two weeks or so. At least I have no VAC on me and have full independence.

I am back to my prosthodontist in October but I am pretty sure my mouth care will be praised.

Emotionally I am getting there. I know I have gained a great deal of resilience through much of these past 3+ years but am looking forward to a some respite from health professionals for a while,

THANK you…if you got this far.

I hope you are healthy and well.

Stay that way!

Denyse.

Link Up 208

Life This Week. Link Up #208

You can link up something old or new, just come on in.

* Please add just ONE post each week! NOT a link-up series of posts, thank you.

* Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not.

* Please do stay to comment on my post as I always reply and it’s a bloggy thing to do!

* Check out what others are up to: Leave a comment on a few posts, because we all love our comments, right!

* Add a link back to this blog in your post somewhere, or on your sidebar or let others know somewhere you are linking up to this blog’s Life This Week.

*Posts deemed by me, the owner of the blog & the link-up, to be unsuitable for my audience will be deleted without notice. These may include promotions, advertorials and any that are overly religious or political or in any way offensive  in nature.

* THANK you for linking up today! Next week’s optional prompt: Share Your Snaps. 40/51. 5 October 2020.

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What Is The Hard* Thing? Part Two. 2018.94.

What Is The Hard* Thing? Part Two. 2018.94.

Last week I began this topic here and had a number of commenters who added their own hard things to the discussion.

What was common to many was the fact that even though they did not want to really do “their hard thing” they were prepared to give it a go and in most cases were pleased to have done so.

That mirrors my own experiences.

Thank you for sharing, everyone.

I found a couple of websites here for those who want to learn more, here and here.

Remember this is not an advice post, merely my story. Wikipedia has also provided a quote.

Exposure therapy is a technique in behaviour therapy thought to help treat anxiety disorders. Exposure therapy involves exposing the target patient to the anxiety source or its context without the intention to cause any danger. Doing so is thought to help them overcome their anxiety or distress.

About (My) Exposure Therapy.

I am not a trained psychologist nor therapist but I am someone who has been taught what exposure therapy is and whilst I did not like its title (I called it my challenges!) I can outline how it was explained for me.

My psychologist brought up exposure therapy as part of her helping me learn what I had to do next after getting myself more confident about some social things I had previously resisted. These included driving to Sydney and going to the Dentist. However, I was resistant to learning how it could help me conquer my fear about IBS and getting ‘caught’ short.

She outlined a list of 1 -10 and then asked me to tell her hardest (the 10 end) and easiest (the 1 end) activities I would be prepared to try and then to do them before the next session and report back. Exposure therapy continued to be resisted by me even though I had the knowledge, and a counselling-trained husband encouraging me. What to do? Nothing was improving, so I did some of the challenges at the easier end:

  • go out in the car about 15 minutes and not go to the toilet just to check I am ok,
  • go out again and not take an immodium in my bag just in case
  • go out for a longer time and not race home because it is too hard not to be sure about my IBS.

And then I HAD to face my worst fear and do a trip to Sydney to Lifehouse, see surgeons about my newly (24 hours previously) diagnosed cancer and be a passenger in the car. Three things! My G.P. said “take the valium, take the immodium” and my husband stopped at any loo along the way. I DID it all. Yes, with some drug help but no IBS.

That changed things a LOT. It did not happen just from that ONE experience…I had many more drives like that to face and surgeries but it was the beginning of getting better acquainted with of what I COULD manage by my thinking and doing.

In fact by early March 2018 I decided I could now drive myself to Sydney for the many treatments at Westmead Hospital. Yes, I still do get some IBS in the days leading up but I manage it. No, I do not scold myself any more nor cry about it. I get on with it. It will never be easy-peasy but I will continue to have my mind “do the hard things” and not be beaten by the anxiety of having IBS. By the way, this photo below is me having finished my 23rd session of measuring, treating and fitting at Westmead Oral Sciences. I drove myself to 18 of these!

Monday 10 September with my prosthodontist and nurse. No more visits for 4 weeks!

My Added Story.

Way before cancer and me learning about exposure therapy but when IBS was robbing me of experiences such as visitign the family in Sydney or going there for a social reason, I used to push myself to do some to these as it was “too hard” not to do them if that makes sense. One was (and still is) a family-duty visit to see my elderly father. I say duty because I really do not enjoy these visits much yet I also want to ensure he is OK and leave some meals and snacks I make for him. A long time ago, he tried to understand my IBS and made adjustments to my visits so we just stay in his apartment and talk. The times he insisted on going out for a meal or snack…well, they ended badly for me so he compromised.

With Dad – early 2018.

When I drove back home up to the Central Coast from the Northern Beaches  in the years preceding my cancer diagnosis I always stopped here. Sometimes I still do. In this space of nature, just off the busy and noisy M1, I get a sense of calm and success at having met that challenge of the journey and the reason. When I was there last week, I made this little video.

That’s not quite it from me in terms of the hard things.

What I have realised since even thinking about this post, is how much I do need to continue to encourage myself to take part in life’s changes. You see, I thought getting my teeth would be awesome and it is, but it added another layer of thinking to my concerns…so, if I can eat what I want to eat after so long, what will it be like if I become very overweight again and cannot fit into the clothes I bought in the last 12 months? I tells ya, it never goes away does it…this hard thing!

Comfort Zones.

No such thing really. Well, in my opinion, sitting or staying in your comfort zone helps you stay stuck.  was in mine for a while when I would go nowhere but when I think more of it is was a DIScomfort zone. I did not like the me that could not get herself motivated* to go again.

*I have not been diagnosed with clinical depression nor anxiety. I have been affected by reactive depression (sadness and tears) but that often resolves within a day. My ‘anxiety’ is more of a worry thing and has been part of me since I was a teen. My doctors and psychologists believe I am managing well. The very low dose, old fashioned anti-depressant I am on each evening is to help me sleep and it s l o w s  down my inner gut workings. If you have been diagnosed with either or both: depression and anxiety, then you should speak to your health professional about the types of things related to exposure therapy.

Moving On. My Next Challenge!! 

I am going to be OK as long as I eat well and mindfully because when I was very overweight I ate mindlessly most of the time and to stuff down feelings. See here, if you have not read my story. So, I AM different to the Denyse I was then and I have new and better skills to manage my emotions and life since cancer.

Wish me luck!

Hope you are all doing well too.

Denyse.

Joining with Kylie here for I Blog On Tuesdays and with Sue and Leanne here for Midlife Share The Love link up.

 

 

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What Is The Hard* Thing? Part One. 2018.91.

What Is The Hard* Thing? Part One. 2018.91.

Hard* as in challenging. scary, not easy, fearful, anxiety-making…but ultimately will or does help with personal growth, wisdom, satisfaction and sense of accomplishment …no matter how big or small.

The ‘hard thing’ is something I have had to accept and do if I want to move on or forward in my life.

There are times when the hard thing can feel too hard or even unacceptable for me to try to do or be.

Noticing nature helps me focus on “just one thing”

Here’s an example.

Last week I had an elevated feeling of anxiety/worry about my irritable bowel syndrome (IBS) ramping up to let ME know what my thinking self was not aware of. That is, as I understand the mind vs the gut thing, that my IBS was ramping up because it sensed a fear situation happening.

If you have read here for a while, you will recall that I have really had to work via exposure therapy based messages and activities to make changes to be able to do ordinary, every day activities. This is the first part of the story and here is the second one.

I had ticked a pretty major (for me) life experience challenge box when I drove to Sydney on Monday especially to meet a friend for coffee and a catch up. Awesome and planned by me and I was so glad to be doing it. However, my gut rumbled and let me know:

 “ah ha you are about to get in the car and go down the M1. This is something that you have been scared to do because of IBS”

I refused to play the old IBS, crying, fearful game and instead, took some preventative action and had a successful drive, a wonderful catch up and came home with no ill-effects.

Go me. Right? Right! Until this…

The next day. I had found I was pretty tired from the physical and emotional effects of yesterday’s much wanted success and when I had my IBS back again AND needed to leave the house to go to the hairdresser, I did similarly to the day before, and gave myself the meds, the talk and set off. I was OK. Mind you, I remained somewhat on high alert and that bothered me because:

In the past, I would have had  the haircut, gone to the loo (again, to see I was OK) then driven straight back home. The place of security and comfort.

But something stopped me. These words:

Do The Hard Thing

Why did I listen? Well, based on my past experiences, I have often regretted being beaten  by the fear once I am home. On this occasion this was the conversation in my head:

Do you want to go straight home and then regret not going for a coffee which is your daily treat?

No, I don’t

Then stay, and sit down for the coffee and do something in your art journal so your mind & body  know who is in charge.

And that was how I did the first hard thing that day.

Next one was this. As I usually drive home from The Entrance, I stop somewhere close to the water and take photos as I notice nature for that day. Instead, I told myself to do another hard thing. I drove in a different direction, to Long Jetty, got out of the car, walked and took photos and a little vid without rushing at all.

This is now my locked screen saver.

These two instances might sound small to some readers but I know that I valued myself more highly for doing something that was out of my comfort zone on two different days as I know how much that helps my inner confidence and ways in which I manage IBS.

It is not the end.

It is never the end.

As long as there are things within me that are scary (to me) and may heighten my gut’s reactions, I am going to need to continue to do the hard things.

For too long, I have avoided hard things and that made me even sicker emotionally than ever. I do not want to go back to that space again.

Next week will be about the why of this strategy and how important it is not only to me, but those readers who let me know about their hard things in the comments.

What is the hard thing for you?

Is there more than one?

Do share in the comments.

Thank you.

Denyse.

Joining with Kylie for I Blog On Tuesdays here and with Sue and Leanne here for Midlife Share the Love.

 

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