Tuesday 19th January 2021

Telling My Story. Chapter Twenty Five*. 2020. Pt.2/3. 51/51. #LifeThisWeek.102/2020.

Telling My Story. Chapter Twenty Five*. 2020. Pt.2/3. 51/51. #LifeThisWeek.102/2020.

Well over a hundred three years ago ….I thought it was time, seeing I had a blog, to start writing my story. It was on advice from a blogging friend, now published author (her story is here) that I did. Then, for a long time I did not. Because cancer was diagnosed.

Nevertheless, I eventually returned to the story and now I am at...Chapter Twenty Five*. Part Two of Three.

So, in keeping with my ethical approach to all things, I am making the chapters about MY recollections to various changes in life for me, and us, and life as we knew it. I hope I can continue sharing the story without any intentionally negative or hurtful references to others who are in my life as friends and family members.

 

*Rightio…how DID I jump from my last chapter..Telling My Story which was Chapter Twenty to here?

No, I did not secretly write the posts and then not publish them.

But I did have a brainwave…do 2020’s chapter while it is fresh in my mind.

So, here I am with the second four months of “THAT” year we won’t forget in a hurry: 2020. Last Wednesday I published the first four months here.

This is the last post of #LifeThisWeek I will publish the final one of Telling My Story 2020 on Wednesday 23rd December.

Then, over time in the first months of 2021 I will write:

Chapter Twenty One (2015),

Chapter Twenty Two (2016- mid May 2017),

Chapter Twenty Three (later in May 2017 – 2018),

Chapter Twenty Four (2019)

In this, the last post for Life This Week, I want to thank each of you who has linked up, read and commented this year. You are very much valued as a part of this community. I am posting again this Wednesday to conclude this series (the Chapter for 2020 I mean!) and will be back on board for:

MONDAY 4 January 2021. 1/51 Word of The Year. Optional Prompt.

 

Part Two of Three. Chapter 25. 2020.

Now, on with the months of May, June, July and August of 2020.

I have to warn you whilst there are no gory photos there may be some details of the ailments I had that are not pleasant to read. Nor, of course, were they pleasant to have!

MAY 2020.

Family.

Our second granddaughter turned 21 in the early days of May. On the same weekend when the Premier of NSW announced, during a COVID update,  that families could visit each other in their houses, S had her ‘lockdown ISO’ party which she shared with us,  around 2 hours away, via facetime. Her Mum, boyfriend and siblings made it a special night and I am told, she got the cake cooked by her mum as was requested! Congratulations, S!

We actually saw her and the family the very next weekend as it was Mother’s Day and my daughter invited us to her house for Morning Tea. That was the first time we had ventured to Sydney since March. It felt strange being on the M1 and it was not too crowded. Delighted of course to see our family. It was lovely.

On the Tuesday afterwards I drove back down again, in a different direction, to see my Dad on the northern beaches. I had not seen him for at least 3 months as we were being very cautious in making contact with such an older person in an independent retirement place. I took all precautions and they had strict protocols for me and paperwork. I admit, I did give Dad a few hugs. He had missed human  contact other than generally on the phone.

 

My Self Care In May.

My emotional health took a bit of a battering as COVID struck with all its limitations, rules, changes and moving of goal posts. I am not great with change but do accept it’s needed and so I offer myself more kindness, easier inner talk and times out (if possible) by myself in the car and to possibly enjoy a coffee. I was delighted to find a takeaway stall on one of my Sunday drives, and then over time, with limitations some of my fave coffee places which had stayed open, could have a small number of people sit for coffee.

I kept up my art and craft practices and set myself small goals and got immersed in fulfilling those. With the Index Card a Day Challenge starting in June I was ready for that. I did some treat cooking for me and for my local GP practice as the doctors and front office staff went through a LOT in terms of dealing with the regulations and patients!

I continued with drives over to the water once COVID regulations about exercise meant you could walk where you went. I did. Sort of. To take photos. Noticing things in nature always helps me and I really needed it because I had health matters to deal with that were significant.

I also acknowledged that it was 3 years on 17 May 2020 since my oral cancer diagnosis. Important to remember, reflect and be grateful.

Health Matters. May, June, July and August.

I will do my best to use short and helpful sentences..and as my husband suggested: dot points.

MAY:

  • I needed to finally, and actually rather urgently see my female G.P. about the bothersome rectal issues. When I saw her, it was “do this, go here, see him” and “YOU have your whole life ahead of you” Get this sorted. She “IS” that kind of doctor and I love her for it but that day I got a bit scared.
  • She sent me to the Colo Rectal Surgeon and to my embarrassment (not his) I was very reluctant to go through with what he suggested first. A colonoscopy. Why? Rectal bleeding and obvious (he saw, not me, I just knew) rectal prolapse.
  • THIS was a condition I had lived with, tried to anyway for well over 2+ years, and I KNEW it was not good. I blamed IBS for my sometimes incontinence and ageing..but as I have found out no, it was the rectum being very lax and ‘falling out’. Sorry to write that.
  • Off home with the news, and the Colonoscopy pack. It was mid COVID restrictions at private hospitals and I opted for mine at the place 5 minutes up the road. No can do. Till June.
  • Waaahh. That is me who does not like to wait.

JUNE:

  • OK, people, with me it was nerves and more that put me off the colonoscopy but I also knew that without doing that nothing would change.
  • Facing up to it, hating the preparation and the aftermath at home, my dear husband took me to the private hospital up the road and left me.
  • The nurses were kind, the prep sure had done its work and….
  • The outcome, as told to me by the surgeon, was no cancer..but a pretty awful rectal prolapse which he strongly suggested needed repair and to come see him very soon.
  • We did, it was very helpful to have my husband there. The surgeon explained how he would perform an abdominal rectopexi. He would go in via my very old hysterectomy scar, pull up the rectum and sew it onto bone low on my spine near the coccyx.
  • Recovery would be in hospital for at least 4 nights and he predicted success. I was ready to trust him.

JULY:

This post tells something of what was to come for me.

  • Testing, testing. Bloods needing for the major abdominal surgery coming up.
  • Then to the private hospital in COVID times for booking in. In actual fact, it was a phone pre-op consultation but I needed to attend the hospital some 45 minutes away for ECG and pick up pre-operation info and prep. No not the awful prep. Phew.
  • I admit the nerves did play up a bit but I have dealt with 4 cancer surgeries AND I trusted this doctor and his goal for me and my GP too.
  • On a freezing late July morning my husband drove me – bag packed with nighties, all I needed for entertainment i.e. phone & ipad, and loose pants – because coming home my abdomen would be swollen & tender.
  • I was literally dropped off because of COVID.
  • Interestingly the prep I had to take at home before surgery was a drink of electrolytes and I had to have an all over shower body wash with their particular sterilising skin liquid.
  • The worst part for me …is always the waiting before going into theatre but this time was made worse as my surgeon insisted on a series of enemas. OMG. Not happy, in fact I got teary with the kindly nurse. She understood but the back and forth in a gown to the loo…made little better by being on a bed close to it. Sigh.
  • Anaesthetist was very thorough with his questions and also had to give me a spinal. Not impressed by the anaesthetic nurse who was very stressed about my veins. Shout out to him: not good to show frustration in front of patient who is already nervous.
  • Then I was GONE. Out like the proverbial.
  • Recovery: very aware of the pressure boots keeping my legs active, the fact that I could not feel from my waist down, catheter in and to be honest, felt well because “it’s over”.
  • Hiccup in communication between staff in recovery – it was busy – COVID restrictions were easing for capacity – meant I stayed in recovery about 2 hours longer than needed…grrr. Could have been in my room.
  • Something unexpected as my surgeon told me the morning after: he did the horizontal cut as planned but when opening me up, there was a hernia which would need repairing. It required a vertical cut to access it, from the first cut to my bellybutton. All stitching was internal with tape holding the outside wounds. I literally had an upside down T wound area.
  • Fast forwarding: I had an OK time recovering but not comfortable at all. My eating was hampered by my mouth and whilst I could have anything to eat, I was worried about …diarrheoa. Trust me, it didn’t happen but I needed reassurance and my surgeon was prepared to let me go home a day early even before bowel movement because I was needing home. He was lovely. Still is!
  • Saw him at a check up about a week or so later and he told me I was a star patient. Oh, I needed to hear that.
  • No driving, but that was OK. I was just so relieved that all was well  and miracle of miracles, no incontinence. Yay. Unreal.

AUGUST:

  • But. It was not to continue as a star recovery.
  • Around 2 to 3 weeks post-recovery, and I was still not able to drive, there was some redness appearing on the surface near my bellybutton. Husband took me to GP who advised ‘could be a ‘haematoma’ …we’ll keep an eye on it. I did, with photos. BUT….the area of the upside down T was needing greater cleaning by me. At shower time. Sigh. OK.
  • Whilst I am not great with complications, I also understand they occur. Even with ‘me’ doing everything right. I wrote here about what happened.
  • Then I wrote in detail here of the timeline, the circumstances and why it took me till October 2020 to be fully recovered!

 

What a Four Months That Was! 

But wait, there is MORE.

Daily Life with COVID19.

No, we did not have it..phew and all that. But we had to, like everyone, live around its restrictions and rules, and to be safe. For us, who are pretty conservative and intelligent people in their every day lives, it was fine. Really. You see, due to our health matters and not much income, it was never on our agenda to have overseas holidays, or even interstate ones so, unlike many, being home-bound in some ways did not bother us.

I made it work for me, the person who enjoyed her daily outings, by varying what I did at home and combined with my cooking/baking mojo returning, I found I could enjoy a coffee and treat at home some days. I also re-discovered reading the women’s mags. I did! Some got ditched soon after buying, but I have been reasonably surprised by the quality reading in the Australian Women’s Weekly so I buy that now. We gave up our physical paper delivery ages ago and get the Sydney Morning Herald as a digital subscription. All the local newspapers, which I used to love, are gone to digital land…except for one free community paper each week. I still enjoy something physical to read.

I continue my audible subscription each month and listen to some books in the car, and others at night in bed. I have taken to reading along in some cases with the physical book when accents become too hard for me to fathom which character is who!

My art is always here for me. I have, as many know, a dedicated area near my computer for all things creative. Making designs and mindful mandalas is the g0-to for me when I need to ‘concentrate’ or be mindful on just one thing!

Cooking now has a rhythm for a meals each week and we tend to use our batch-cooked meals a couple of times a week, and eat meals made from scratch on others. My dad is the recipient of some of the frozen home cooked meals.

Head and Neck Cancer Awareness and Support.

In the weirdest year ever…. COVID …to date…all things meeting-wise and catch ups were off the table. Therefore the organisation for which I volunteer had to re-think what it did to get messages and support out there for patients, families, carers and professionals.

The June Patient forum at which I was to speak was cancelled and morphed into an on-line program over many days and weeks. My part, on line as recorded by me here, was to respond to my psychological reactions to and management of having head and neck cancer.

The usual fundraising event for Beyond Five was Soup for the Soul and the physical events were not happening, nor were there any of our local Central Coast meet ups. Nevertheless, we worked on getting messages out there via You Tube, and of course, Zoom Meetings. I was not great at zoom so not that involved but as mentioned last time, my interview was on line about nutrition.

More from COVID Year 2020 for Me To Remember!

Apart from hospital homecomings… THIS was a big day and much needed..our son and his four kids came for lunch. Ahhh that’s better!

Grateful for Family Visits.

Thank you for reading..if you got this far. I am incredibly grateful to my readers and commenters.

Denyse.

Link Up 220

Life This Week. Link Up #220

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! Have a great break from now till the New Year. May You Be Well! 
The next link up will be Monday 4th January 2021. Optional Prompt: Word of The Year.

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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

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: 43/51 Inside. 26.10.2020

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Click here to enter


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