Friday 2nd October 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

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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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