Wednesday 28th 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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Comments

  1. You raise a lot of things here – and the two I find interesting is the difference between being lazy and being worn out by life (and for me, I need to recognise the difference, because I fluctuate between the two. but the end result is the same. One should be accommodated and one shouldn’t). And the disenchantment with ageing. I get that on a few things. I need to work out what can be changed, and what I need to learn to manage or embrace….but enough about me, and back to you….It is a HUGE deal you’ve been through and look how far you’ve come! I hope this is truly the end of the mouth appointments for a long while, and all other medical appointments. It’s such a big deal and you’ve managed the emotional wear and tear so well. I love the collage of the 4 pics smiling (grateful to be out of surgery). It says a lot about you, really!

    • Lydia, I am so glad this post helped you reflect too.

      It’s not easy going through life without much guidance other than superficial markers…and if we believe the media, we are doing much of it all wrong. HA! No we are not.

      To embrace life is to embrace change. I did not do well at this until I had to. Facing cancer, which was in its own way, a relief to know the what of my recovery and how to help it by waiting it out with distractions and time.

      Yes, it’s been a huge last number of years but by crikey as they say, it has taught me a lot about myself and my reserves and now, for the first time in forever, I can actually plan more in my life for a while without appointments impacting as much as they did.

      Denyse.

  2. You certainly don’t do things by halves do you Denyse? This is enough for one person to deal with and to get through it the way you do is a sure sign of resilience! I’m glad to hear you are now feeling better and hope you are free of appointments soon. Stay well!

    • Well Debbie, I did not have any choices really once my body took over and told me what had to change. Very abruptly and on top of other things once 2020 kicked in, it has been quite the ride towards admitting what had to be done, doing it and then overcoming the challenges.

      In some ways having that long recovery period for each cancer surgery taught me that I needed to plan my day so boredom and tedium did not overtake me and affect my mood.

      Looking back, I am so very grateful I DID have to face the surgeries for eyes and rectum. I am better for both even though the second one brought further challenges!!

      So happy to know head and neck cancer has not been detected and after my visit to the prosthodontist in 2 weeks, life will ease off for cancer checks. This is huge for me!

      Denyse.

  3. Hi Denyse, I’m so pleased you found the benefits of healthy eating and exercise. It’s never too late and living a healthy lifestyle in mind, body and spirit means a fulfilled life to me. We can enjoy so much more when we are healthy. Thanks for hosting #lifethisweek and have a lovely week. x

    • Thanks Sue, I know this is your mission and your mantra.

      As you know though, these were not easy to come by and it took cancer in my mouth to make me see and appreciate the value of both eating well for nutrition and eating to also satisfy my senses.

      The apple watch I wear is an amazing motivator because like most of us I guess, I am competitive but its with ME!

      I adjusted the expected steps in a day once I was recovering from the two recent surgeries so I did not feel I was ‘failing’ and now, some weeks later, each week I am able to increase my daily and weekly challenges of moving this body of mine.

      Thanks for linking up!

      Denyse.

  4. Denyse you’ve been through so much. I hadn’t realised you had faced so many challenges. I hope you get a break from treatments and appointments. I love the way you’ve documented your challenges in photos. Your photos are a great legacy for your family.

    • Thanks Jennifer.

      I am certainly glad to be nearing the end of check ups for quite some time.

      I am still needing wound dressings changed this week and into next week at the GP.

      I have a check up in Sydney with my prosthodontist in 2 weeks and a post- op appointment with the colorectal surgeon at the end of the month.

      However, I remain incredibly grateful to have great health professionals and that my body serves me well.

      The photos are treasured for sure.

      Denyse.

  5. Denyse, I’m glad to hear you’re feeling better and that you’ve been taking care of your health. Life is better when we’re in good health. Have a great week! #lifethisweek

    • Ah yes, it is indeed Natalie.

      However, when ageing and health matters that related to it arrive, then it’s time to do something. I admit I was not expecting 70 to bring what it has but I am very grateful to have good professional care available and at a reasonable cost.

      Thanks for your good wishes,

      Denyse.

  6. You’ve certainly had a rough trot and more than your fair share of procedures and appointments. I hope you catch a break and get to take a break – here’s to happy, healthy days ahead!

    • Thank you Sammie.

      I think that having to face the non-cancer relating health issues was a wake up call.

      But prior to this year, as I have discussed with my GP, I would not have been in a ‘headspace’ to deal with the rectal prolapse surgery. The eye surgeries happened a little earlier than I imagined but they have been so helpful.

      Grateful for all my professionals who care for me too!

      Denyse.

  7. What a time you have had Denyse. One thing after another. You really do seem to bounce back and you have a strong attitude to getting well. Go you! What an inspiration you are to others. x

    • Yes it has been I agree. Not until I reflected for this post I realised how much, Jody!

      Thanks for your kind words…you too know how resilience helps us.

      I still have my times of downs and disliking what has happened but I also know better how to get myself out of that spot.

      Hope things are going OK with you and that COVID restrictions will ease soon..

      Denyse.

  8. I’m so glad you’re almost through your latest health issues. Well done for coping so well with the rectopexy – you’re right, it’s not a small operation and you had a sizable wound so it’s not surprising you had a wound breakdown. Those VACC dressings are marvelous. Take care, regards Christina

    • Thanks very much Christina. Yes, the upside down T-wound in that area is not ideal. Sigh.

      Nevertheless I am fortunate that the surgery, the application of the VAC and subsequent time since with regular wound care is all finishing up very soon as the wound is miniscule now. Between my husband and the local GP nurse, we have photo records of the progress and they help with my motivation too.

      I hope you are making good progress too.

      Denyse.

  9. Wow Denyse – it used to be “X marks the spot” but for you it’ll be “T marks the spot”. You’ve certainly had a run of surgeries over the last few years. Hopefully things will settle down now and you can enjoy being healthy and “normal” again.
    I think getting older brings with it far more health issues than we expected – even the healthiest of us have to keep an eye on things (remember when we didn’t even think about our bodies???)

  10. I so agree, Leanne, we take a lot for granted until ageing becomes a factor and it’s true, the body does breakdown in its different ways.

    There is no such thing, in my view, as anti-ageing…but there sure are people making money from that.

    Acceptance of ageing but not being so caught up that we stop living life is my goal.

    Yes, I have counted 9 anaesthetics in past 3.5 years. Fewer were major (one was 11 hours) and others were very light but the body and brain need nurturing coming back from them alone.

    I am at the “almost done” point now with the upside down T wound and the photos prove it. It’s in a spot, under my “tummy roll” where I cannot see it unless I look in the mirror. However, between my husband and my GP’s wound nurse, I see the evidence of healing and we even have Tuesday week at the prospective day it’s done. Yay for that AND proper showers again.

    Your kind words are very much appreciated.

    Denyse.

  11. I could identify with your statement about eating for comfort when you were worn out or stressed. I think many of us wind up making bad choices when we are stressed or tired. I know I do. I learned that again just yesterday. I think stress has all kinds of negative effects on our bodies, some of which we are still learning.
    Denyse, I have said this before, but you are so brave and amazingly upbeat. I think I would have crumbled when facing all the health issues you have faced over the past 3 years. Your strength and grace under the most trying conditions is an inspiration.

    • Oh Laurie, thank you so much for your kind and supportive words.

      I thought (way before cancer diagnosis in 2017) that I could never have managed such a thing but somehow, because of the way in which ‘at least I knew what was wrong’ I could put my mind to it and recover despite the time it took. It helped that I had an amazing supportive husband (still do!) an on-line amazing group of ‘cheerleaders’ and the best professionals looking after my health.

      I still have not great day (and that is where I check with myself if it IS actually chocolate I need, or a hug or just time to get through it).

      Sending my best to you.

      Denyse.

  12. When you put all your health issues in one post, it’s been a massive few years for you! I’m glad to hear about the improvements in your emotional wellbeing and I know it hasn’t been an easy task getting there. That tweet by Guy Rees is everything. I hope you catch a break soon with your health issues. Sending you lots of love

    • Yes it sure does, Sanch.

      I guess as I see myself almost finished – from the cancer checks and then the abdominal surgery x issues – it is like I have a freedom I have not had since…maybe 2013-14.

      Quite liking this for now.

      When I saw the Guy Rees tweet I knew I had to keep it. So many people want to look at “you were stressed, so you got cancer blah blah…” cutting out the ‘blame game’ is so helpful.

      Stay well…and I hope you have something lovely planned for the long weekend.

      Denyse.

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