Tuesday 24th November 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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Reality Bites. Part One. 2017.96.

Reality Bites.Part One. 2017.96.

Today, 6 August 2017, as I write, it is exactly ONE month since my cancer surgery on 6 July 2017.

I am calling this post ‘Reality Bites’ as the consequences of the diagnosis of cancer, the pre-op visits and treatments and then the ultimate ‘reality’…. the complex and major surgery in my mouth and on my right leg have truly ‘bitten’.

I am writing it out so I can honestly tell you, my readers, that I am NOT doing so well in that emotional sphere at the moment.

This is despite my previous posts where I appeared to be going so well. I was/am in a physical sense.

Readers who want to read more about what this surgery was about can go here:

my diagnosis….my updatesmy grateful post #1my grateful post #2.

Reality has bitten in the form of a heightened emotional response (and IBS frequency) to what has happened to me…my feelings are catching up with what I have been through – from date of diagnosis 17.5.17 till now. (less than 3 months!)

Here is how it is for me NOW as I recall memories that are not great and are affecting me somewhat even though I know things will get better over time.

  • Wow, it’s been one month since the huge operation which I  knew was going to (hopefully) take all of the cancer out of my mouth and leave me with a reconstructed mouth using tissue and bone from my right leg.
  • I recall my feelings of being totally overwhelmed when the surgeons began to describe how they would ‘fix’ this cancer in my mouth only one day after I found out I HAVE cancer.
  • I got through the drive home after that with my hub on my least favourite road (M1) as I tried to wrestle the past 24-48 hours into some sort of sense for me. It was surreal.
  • At home I ‘tried’ to go on with ‘normal life’ but that is impossible when the word C A N C E R shone like a red light in my mind constantly.

“last smiles” were/are treasured but under those false teeth it’s cancer

  • I made  plans and prepared for hospital,  making meals for later,  and making sure I had sufficient clothes and activities ready to take to the hospital but it was surreal. I was doing this BECAUSE I have cancer. It still did not make sense to me.
  • I know that I saw my GP and psychologist about the surgery and what is meant to have cancer and yes, I cried sometimes but other times I was just numb. THIS could not be happening to me!?
  • My mouth and its discomfort and smell were the source of the cancer and I began to ‘hate’ it.
  • I also knew this surgery was going to take away 3 things that were and are precious to me: smiling, communicating and eating. Made me sad and quite stressed.
  • I was resigned to what the operation was but I truly had no idea of how it would impact me because it was like I was somewhat detached.
  • I knew that the surgery would be within 4-6 weeks of our consultation with the surgeons but oh how those weeks dragged on as I wanted to surgery to be over…but I also did not want to have it. So horrible. It  ended up being 7 weeks after diagnosis.
  • It took me weeks to finally get out the hospital forms and complete them. I just couldn’t before. I had to make myself do them. Filling them out meant, of course, I HAVE cancer and HAVE to do something about it. 
  • I made a decision to stay in a ‘cheap place’ the night before surgery and I so regret this as we were uncomfortable and I spent some of the time ‘feeling guilty and responsible’ because I have cancer. 
  • On the day of surgery, at 6.00 a.m. we  presented yourselves at Chris O’Brien Lifehouse, and then once ‘checked in’  I undressed and got into the paper gown which meant THIS is about to happen. O.M.G. 
  • I said goodbye to my husband and was off….the journey into the unknown…the operating theatre.

I’ve written two posts (see above) which described how things went for me in hospital so I will not outline any more here today.

The next post will outline what happened emotionally in hospital and then my homecoming. I have chosen to write about it all from an emotional perspective as life as a cancer patient post-surgery is affecting me and writing it out is to help me.

At home in my first weeks.

Have you had cancer?

Do you have an experience of having a life-changing event for you where things caught up with you later on?

I appreciate your comments and support. I am not looking to ‘get advice’ as I think that in recognising what is happening to me and letting it happen is probably the healthiest way I know how.

Thank you for your support!

Denyse.

Joining with Kylie and friends here for I Blog On Tuesdays and here with Leanne and friends on Thursday for Lovin’ Life linky.

 

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