Tuesday 27th October 2020

Self-Care Stories #6. 42/51. #LifeThisWeek. 84/2020.

Self-Care Stories #6. 42/51. #LifeThisWeek. 84/2020.

Last time I wrote about self-care, I was about to have some more surgery. It was a success and it was wound debridement then application of a VAC system to help health both faster and cleaner. More about this as the post goes on.

Self Care: the Mental Story.

I cannot lie. Knowing that I needed more surgery on August 24th to fix the wound from the first abdominal surgery some 5 weeks before did not make me a happy camper.

It also was a messy situation. Literally. I had no idea that a wound could ‘dehisce’. I had also never heard of the word. My GP mentioned it as I anxiously awaited the result of her examination of my very messy & leaking wound area the Wednesday before. I literally could not see it as it was at the junction underneath my tummy where the upside-down T incisions met.

To better explain: from my search:

Dehiscence is a partial or total separation of previously approximated wound edges, due to a failure of proper wound healing. This scenario typically occurs 5 to 8 days following surgery when healing is still in the early stages.

Wound dehiscence is a distressing but common occurrence among patients who have received sutures. The condition involves the wound opening up either partially or completely along the sutures – basically, the wound reopens to create a new wound.

 

Our urgent appointment to my colorectal surgeon the next day confirmed that whilst the wound (stitched internally) was opening up, it was NOT exposing the inside of my abdomen nor impacting on the surgeries I had just had. Phew. I guess.

Trust. I had to have trust in both the surgeon and his work (along with the support of the specialist wound nurse) to come through this second surgery. I had to have an additional surgery post head and neck cancer and I remembered the disappointment very strongly. I also remembered that “if it had to be done, I needed to accept that”.

Relieved patient and doctor!

This time, it was a shorter surgery where he cleaned out the wound area (debridement) as I was under a general anaesthetic, leaving an area of 8cm long x 3cm deep and 3cm wide to be covered with the VAC system dressing, tube and ‘me attached’ to the VAC machine itself. I woke with all that done and by the next day, had the lessons in how to care for it before I would have my first ‘at home’ nursing. This was new to me and I was incredibly grateful. Our private health insurance paid for the equipment (each wound change used a new section of the VAC and was approx $80 each in value). Her travel and services for 7 visits (as was needed  by me) were paid by Teachers Health who would have paid for 10 but by 7 my wound did not need the VAC system anymore.

About the VAC system: Mine was on me, next to me as I slept, 24/7 from 24 August until 17 September. No showers but I could wash myself in a limited way.

Negative pressure wound therapy (NPWT), also called vacuum-assisted wound closure, refers to wound dressing systems that continuously or intermittently apply subatmospheric pressure to the system, which provides a positive pressure to the surface of a wound.Jul 22, 2020

Negative pressure wound therapy (NPWT) is a method of drawing out fluid and infection from a wound to help it heal. A special dressing (bandage) is sealed over the wound and a gentle vacuum pump is attached.

I Found It Quite Confronting. 

I admit all of this physical attention by professionals for a part of my body rarely shared with anyone other than my spouse, was hard on me. I knew the ‘why’ and the ‘what’ of the reasons. The confrontation I guess for me was about not only the wound itself – not good with them at the best of times – but that my husband or the nurse took photos of me. My body, there, where it is fat and bits of it have weathered a lot – big surgeries for example AND child-bearing. The photos were valuable because they were the proof everything was healing. I just found it hard to ‘see myself’ from this angle. I still have the photos as do my doctors as it is an important record. I have shown a couple of progress shots to family but they are not something I can nor would share publically.

 

Self-Care: the Physical Story.

In the normal scheme of things I can say that I should have been well on my way to full recovery at about the 6-8 weeks mark post first surgery. This would not be the case with the second surgery. It put me back another 4-6 weeks. I had to learn (again!) to live with:

  • physical restrictions with a tube attached to my wound, which was then wound around the bag, which I had to wear on my shoulder. It was quite heavy too, so I could leave it on the desk while I blogged or did some art. I did have to remember to take it with me though…I did have a couple of times over the 3+ weeks where I almost forgot but the dragging of the tube on my wound soon let me know
  • pain. Not much from the wound itself as it was covered and pretty numb from 2x surgeries. The skin around the wound – and some hair in the area – got itchy and a bit painful but managed with cream. Interestingly I was warned I might have needed a very strong pain killer for dressing changes initially but fortunately panadol was enough
  • recovery from wounds from surgery #1 inside and outside made for (and still does as I write) so stinging, aching and pulling sensations from my belly button area and down and across
  • I need to get some help via an arm from my husband or nurse to easily rise from lying down (when wound was being changed) as stomach area feels like I have overdone sit ups. I haven’t. Apparently it can take another 4 months for this to be better after all the cutting and stitching that went on inside
  • less resilience for staying on my feet and walking. I turned down my Apple Watch walking goals initially and over the past 4 weeks have been increasing them slowly
  • being able to drive again took about 3 weeks post first surgery…and I had just become used to that independence when the 2nd surgery happened. By 2-3 weeks post that one I had the OK to drive again. My husband has been and continues to be the main grocery shopper now and I am loving that!
  • getting more distracted by art, some reading, magazine browsing has helped while away the time during a COVID recovery
  • still doing my best to dress with purpose each day and going out for a walk somewhere or a coffee.
  • now that I have NO MORE visits to the GP for wound care – that ended last week as the wound healed fully, I have been able to drive to Sydney to see my Dad.

Self-Care Lessons.

  • I can do this
  • I have done this before
  • I have strategies I can draw on
  • I have a loving and supportive husband
  • I know this is temporary
  • I will learn more about myself by coming through this.

That’s it. A much longer self-care post than usual, but I did think it worth sharing.

Getting over anything health-wise always brings up more than we are perhaps prepared for.

I hope you are doing well.

Denyse.

And a lovely P.S. from me!

On Saturday 17th October it was 50 years since we met. As this post goes live, we will be travelling to the north west of N.S.W. to the city of Tamworth where we met, and then to have a couple of days going to towns that were of great significance in our early single, then married lives. There WILL be a post about that you can guarantee it. I may not be on-line to comment or write on your blog until I am back home. 

 

Link Up 211

Life This Week. Link Up #211

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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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Click here to enter


 

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