Wednesday 19th February 2020

Musings On 2 Years Of Living As A Head & Neck Cancer Patient. 56/2019.

Musings On 2 Years Of Living As A Head & Neck Cancer Patient. 56/2019.

I have written frequently over the last two years about my diagnosis with a rare head and neck cancer. You can find the many posts, and ones where I have shared on other sites here. I keep the posts at the top of my blog’s home page to help any other head and neck cancer patients and their families.

Musing One.

What has happened this month?

I am a memory-keeper and in some instances that can be good, others memories remind me of not-so-good times. As May 2019 drew closer, so did the second anniversary of my head and neck cancer diagnosis. I sensed that I needed to mark it in some ways, and that was through writing starting even before May. I also used my creative side and constructed a big mandala documenting every day since diagnosis.

I did these to help me through and to show, when I shared, what the experience was like for me.

Thanks to this blog, and a facebook page along with instagram I got some caring comments and support on-line which I have always found helpful.

What I have also found is that I am the only person who really remembers the lead-up to that morning on Wednesday 17 May ’17 and then how it affected me afterwards.

I guess, “my” cancer is like any life experience that we have as an individual. It’s mine. Yes, I share. (some might think over-share: sorry!) And my dear husband “knows” the stories as he has experienced them alongside me. However, he is  was my carer and now that I am as independent as I can be, I am “the loved wife” in our long marriage. That’s great.

On my 69th Birthday 2018

Musing Two.

How has the lead-up to the anniversary been?

I thought it was good. It was like box-ticking and I felt good doing that.

Remembering what I experienced with the tests before the diagnosis. Ok. I remembered but did not over-think it.

The weather and the dates changing on the calendar also reminded me but again, I was feeling pretty good.

I had two hurdles, if you will, and they were the visit to my Prosthodontist on May 13 and to my Head and Neck surgeon on May 21. These were of concern in a way because at my last visits to each (three months earlier) there was talk of a possible fifth surgery to ‘fill out the top of my mouth.

I can tell you now, dear reader, the prospect of the surgery did not concern me nearly as much as the recovery from it…the LONG time with no top teeth and then more time with getting the mouth healed enough for a prosthesis. I have just had 8 delightful months being able to EAT again and that would be tough. Of course, the smile would change…ok.

December ’18

Musing Three.

What actually eventuated.

Visit to the Prosthodontist.

Dr Deshpande asked me about pain levels. Pain comes and goes in my mouth where it has all been reconstructed and I told him a few weeks earlier it was significant. However, as it settled I did not need to call him. I was much more confident about those calls than I ever was in 2018. He examined the upper prosthesis, the gums, and where the abutments are in the gums. Yes, there was some tiny more skin growth but nothing to be concerned about at this stage.He did a small clean around the abutments and told me what I had been doing every day was going very well and the gums were in good health. Phew. Using the waterpik twice a day was a key element. He showed me around the inside of my mouth and his nurse videoed it as best she could as he explained it all. He is so patient and very thorough and professional. After taking lots of close-ups inside my mouth he told me his view that my surgeon would be unlikely to want to do more re-construction because the skin area of concern back in January/February had not changed. Back for my check up 16 July.

Fistbump! Photo of “us” knowing each other in this professional setting for 2 years.

 

Visit to the Head and Neck Surgical Team.

This was on Tuesday 21 May. Both he and his nurse were delighted to see me and it wasn’t just because I brought cupcakes I had made. They can see a different me emerge I guess, and someone who has taken on an Ambassador role to work towards helping head and neck cancer awareness and both Professor Clark and Sr Froggatt are foundation members of Beyond Five. Again my mouth was examined and as I recalled the words of my last visit “I am a cancer doctor, so I AM looking for cancer” and it all seemed fine I was OK. He decided any choice about more surgery would be determined by what happens inside the mouth. “Could get worse, better or stay the same”. And now would not be in my best interests to do this. Phew. However, I also learned that the interval till my next visit is 4 months, not 6. And that I will require some CT scans as baseline ones. This was a wee bit threatening to my equilibrium but as I do, I went along following instructions. Before I left, I asked some questions about my mouth: here are the answers.

  1. the tightness will remain up top as so much more has been added for the re-construction than a normal mouth would have
  2. sniffing is part and parcel of having the nasal area invaded quite a few times…sniff and manage!
  3. dry top lip probably from not being able to seal off my mouth
  4. need for a new upper prosthesis? “If it ain’t broke, you don’t fix”

Thanks Cate for all your reassurance and hugs too!

Then there was this. “A Photo with Denyse with her Badge on.”

Hugs and farewells and I will be back to Chris O’Brien Lifehouse to have a check up on September 24.

Musing Four.

When having cancer is a reality that I am reminded of every time I visit Sydney for cancer treatments.

Westmead.

Where I see the prosthodontist. I lived in western Sydney and had never been to the Dental part of the hospital until May 24 2017. Since then I have been 37 times. Each time could be lengthy and required patience from me in spades. However, there were some visits that were emotionally bumpy and Dr D and O handled my state of health brilliantly. When I was there recently, the lady of the front desk said “Denyse, we are like family”.

That was lovely. I would not have met so many kind people there without a rare mouth cancer, and where the expertise was right there. Someone working alongside my surgeon in each surgery. Wow. Talk about fortunate.

Camperdown.

Specifically Chris O’Brien Lifehouse, slap back in the midst of Sydney’s major health precinct on Missenden Road. Sydney University on one side, Royal Prince Alfred on the other, and new buildings mixed with the historical on either side.

This is where I first met my professional team one day after being told I had cancer.

I had my husband with me of course. He was (and is) the patient man by my side. So, I recall, being there for the first time, seeing this amazing purpose-built cancer centre which had come from the vision of Dr Chris O’Brien who was on our telly as part of the reality series R.P.A. Such a professional and friendly head and neck surgeon with heart. I sensed I was in the right place WITH the right people straight away. Finding out later that my surgeon had trained under Chris O’Brien made me feel even better about what was ahead. And so Lifehouse was where I had the first BIG surgery and stayed for 10 days in July 2017, then further day surgeries in November 2017, February 2018 and May 2018. Follow ups too mean I have been there 12 times.

Musing Five.

IF I did not have cancer here’s what I may have missed in my life….

  1. the opportunity to take on new information and run with it. I learned I can deal with more than I ever imagined.
  2. getting to know people from the health fields who amaze me with their professionalism, the wealth of knowledge, their compassion, their skills and their genuine humanity
  3. being able to recover as quickly as I did from the decline in my emotional health which was ‘strangling my enjoyment of life’ from 2014 to mid 2017
  4. meeting people from all walks of life: in real life and on-line, a facebook group in New Zealand is an amazing space,  who have also been diagnosed with head and neck cancers: Yet, I still have not met anyone that has had mine exactly: Squamous Cell Carcinoma of the Upper Gums & under Top Lip: no risk factors of smoking or alcohol: rare of rare ME.
  5. the many ways in which I could grow and change to become ‘the Denyse’ I wanted and needed to be again: strong, positive, confident
  6. sharing my story of this cancer and being able to offer help when asked to others with head and neck cancers
  7. becoming someone with a role to play in terms of education and awareness of head and neck cancers working with Beyond Five. The charity to support patients, carers and family members with information, videos, print-outs and connections to local support groups as those affected with head and neck cancer need support “beyond five” years of the traditional
  8. to take more time to actually enjoy what is rather than be longing for what’s next. I add, this is me as a definite “w-i-p” because it requires constant reminding from me to me
  9. a greater appreciation for those who have been part of my life and have added their emotional and other support to me over the internet, phonecalls and visits, along with cards and gifts. I have been spoiled!
  10. to take what I have experienced and give back. I will return to Chris O’Brien Lifehouse on Monday 3 June 2019 to be in the audience to listen to my professional head and neck cancer team talk of what working with and learning from Chris O’Brien was like. This week marks 10 years since his early death due to cancer.
  11. to look at the posters and information about how Chris O’Brien Lifehouse came into being and thank the governments of the day for helping it happen. Chris was well enough to know it would be constructed but his wife Gail took over his role after his sad demise.
  12. becoming part of the community at Chris O’Brien Lifehouse even though I am not there much physically, I donate materials to the art program, I wrote a blog post for their website and I have been in a couple of other site’s telling my story including Beyond Five.

 

Musing Six.

Blogging & helping others works for me to manage my emotions relating to cancer.

I have a great group of on-line supporters who have helped carry me through this story or journey as I call it. I prefer not to use war-words like warrior and ‘beating cancer’ as I also know not everyone does. I have already known of two young women die in the past two months from cancer. Not head and neck but cancer. So it does ache to even talk about that. I know though that we have many people helping with fund-raising to support cancer research and I won’t name any others than these as they are close to my cancer-heart.

The Big Hug Box. I started making some bookmarks for Lisa to include in the Big Hug box back in 2018 and loved contributing to her charity started because as a young mum just diagnosed herself with a rare cancer, she knew patients like her could use a BIG hug. For more about Lisa’s work go here.

Beyond Five. For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting. Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

Writing my story has helped me manage emotions, experiences and responses well. I am indeed going well two years AFTER my cancer diagnosis. Thank you for being here to read about it.

Denyse.

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

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.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Changing Me. 19/2019.

Changing Me. 19/2019

Changing me is I now realise ON-GOING!

It has been many years as I have mentioned in previous posts of living overweight and obese that has given me a skewed view of my image. My most recent post is here.

I am doing what I can now, to approach my thinking with:

  • kindness
  • self-care
  • words of encouragement

and seeing that thoughts are not always true.

I already use the Calm app for meditation each day, and often in taking a time-out will be mindful in whichever are my circumstances as I learn to be present and here….in the now.

Eating mindfully (and planning to eat) is helping me in these ways:

  • I do not follow those rules of ‘only concentrating on one food and mouthful at a time’ mindfully in eating.
  • I do now examine and observe my inner feelings (physical and emotionally) about the why and when of eating.
  • I am getting so much better at this!
  • I am also recording what I eat via a free app and it is Australian foods-based and gives me an idea of how well I am doing.
  • As a no-diet person, this feels good to have some control but also to eat within the generous range I have allowed myself.
  • I am using my fitbit to slowly up my steps each week by 500 steps  from a base of 6000.

On Tuesday 19 February 2019 I had my 3 month cancer check, and my Professor Jonathan Clark was delighted to see no reason for further surgery (yay for now) and when I mentioned my weight gain since ‘teeth’ he said “that’s good.” Oh, he means that is healthy and I am doing well! Of course now I get it…but as I chatted with his clinical nurse consultant who is just the best for me, she and I agreed that moving more is a good idea!!

 

On 23 February 2019 I posted this image and the words on Instagram.

One Year On.

As a person who was overweight to obese for decades, losing weight pre-cancer diagnosis & post cancer surgeries has been a mental issue.

I realise to others I look well, healthier and ok now.

I acknowledge I was 5kg+ lighter a year ago & pretty darned miserable at times because of eating restrictions due to 4 cancer surgeries & reconstruction inside my mouth.

I do think I did the best I could at the time to nourish myself but acknowledge how much I missed:

*chewing

*crunching

*biting

*savouring

FOOD from a variety of offerings! My shopping for over 14 months took me away from foods I missed biting, chewing, crunching & savouring.

From 21 Aug 2018 this changed. My upper prosthesis was fitted. It was novel to try the foods I’d missed: cheese on a cracker took minutes to eat. Then over time as my mouth & my brain handled the different foods better it was/is great.

Then, about a month or so ago the creeping up of my weight on the scales (once a month weigh in- years of measuring my worth via the scales is a horrid memory) was noted & I “have” to admit I knew what to do IF I still wanted to:

*like wearing my new clothes

*feel comfortable in my body

*enjoy all aspects & variations of foods I could now choose from

It was time to choose a better balance between foods that nourish & are enjoyable & to increase my movement each day.

This mindful eating plan I’ve made up is working for me.

I am now understanding the WHY of how I used food to deal with emotions & that it does not work like that MAKES so much sense!

Keeping myself active by changing my approach to movement. Upping the steps weekly by 500 a day,  starting at 6000 a day.

Most of all I want to add is how grateful I am to be well after nearly 2 years of oral cancer & that I can continue to learn best how to care for myself emotionally & physically!

Changing the voice in my head…. the inner critic…to low volume or mute whenever she begins to shout!

So have you ever taken steps to change you?

Denyse.

Joining with Min for Zen Tips Tuesday here.

Finding a place with Sue and Leanne here in MidLife Share The Love on Wednesday

and, of course, Lovin’ Life with Leanne here each Thursday.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

Cancer Is Always ‘There’. 2018.84

Cancer Is Always ‘There’. 2018.84

It is rare these days for me to compose a post and publish it immediately. I have planned posts, scheduled posts and draft posts. Today is different.

I need to write out my truth and my feelings based on recent, significant events for me: a Cancer Patient.

What Do I Mean “Cancer is always ‘there’?”

  • Once diagnosed with cancer I held onto the belief, rightly or wrongly, that my surgery would eliminate the cancer in my upper gums and behind one side of my top lip.
  • It did. In terms of reports back from the many lab results, biopsies at the time of the major surgery in July 2017, and the reassurances from my professional team.
  • However, I do, like many others who have been diagnosed with cancer, “know” that it could come back in another way or form….and also that the reason for my four surgeries has been because I had/have cancer.
  • The many (22 now) visits to Westmead Oral Sciences to have treatments and checks for the progress of my mouth healing, stent wearing and health of my gums is because of cancer.
  • This came home to me yesterday, ONE week after re-gaining what I thought I wanted most: my smile, when it appears that the top lip (cancer site) is tightening again and I need to do some exercises to help it gain more suppleness.
  • There I was, thinking (albeit naively) that the cancer thing was almost gone.
  • Nope, no and not at all really. Check ups, doctor’s visits, mouth checks …..it is not gone nor over by a long way.

Explaining My Mixed Emotions and Responses/Reactions via My Photos.

 

Thank you for reading.
I wonder if any readers who have cancer/had cancer might identify with this.
I am a relative newbie (only 15+ months since diagnosis) yet it feels like I have had cancer forever.
I guess I do.

Cancer is always ‘there’.

Denyse.

Linking with Sue and Leanne here for MidLife Share The Love linky.

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

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.

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

I Am Grateful Today. Cancer Surgery #1. Part Two. 2017.94.

I Am Grateful Today. Cancer Surgery #1. Part Two. 2017.94.

Two weeks ago I wrote “I Am Grateful Today. Cancer Surgery #1 Part One. Here is the link as it is the ‘back story’ to this post.

Where did those two weeks go? I did say I would write Part Two last week for I Blog on Tuesdays and Loving’ Linky on Thursday but a hiccup called anti-biotic reaction in my gut  s l o w e d  me down!  Add to that a  ‘foggy post-anaesthetic’ brain and needing to rest more, time got away!

Here I go, outlining some of the features I was grateful for during my stay on Level 9 North Room 16 at Chris O’Brien Lifehouse. I arrived on the ward late Sunday afternoon from ICU and the delight at seeing the V.I.E.W. from my bed made the wait worth it!

I was in my private  room from Sunday 9 July until Saturday 15 July – day of discharge.

Warning: I have added a few photos of myself as I was recovering. In some ways this was very helpful for me to see progress. Scroll on by if you would prefer not to look. 

The arrival in a room of my own brought me some independence even though I still needed some initial assistance to get up for the ‘loo. I was grateful, oh so grateful for my relative independence.

I was still on nil by mouth – liquid food via a naso-gastric tube  ( I tolerated it and guess I was grateful because the nutrition, along with the drip feed of fluid was keeping me alive (LOL) …just disliked the feeling on the fluid  tube feed inside me. 

I stayed in a hospital gown because..I was messy…no details but a fair bit of me in the head/neck area was cut into and then stitched back so there were… messy fluids. I was grateful for a warm quick wash in bed and a change of gown daily. It also meant my nice Sussan nighties stayed in the bag until later in the week.

I have mentioned elsewhere that I had some amazing nurses caring for me and I struck up conversations with them all. Often my chats were to ask them about their career choice and how they liked their working lives, and with only one exception all agreed (from young ones to older ones) that this is a vocation for them. I am incredibly grateful to those who choose nursing and who remain dedicated to it as I saw first-hand how rushed off their feet they could be. I often said to them “I hope you have had a meal and a bit of a break today/tonight”.

The night nurse I had 4 nights in a row who clicked with me was Roan and I know I featured him in a post recently  about how we shared a passion for  photography. He was the one who invited me to get up and onto the balcony for sunrise pics. I am so grateful for his genuine care.

As the week progressed I was grateful to see some of the surgeons’ team arrive each day to check on me (and the flap inside my mouth to see it was still ‘lub dubbing’. I was ALWAYS grateful to hear that sound from the doppler! 

I had excellent care from three allied professionals and I am oh so grateful for their advice and help.: the physio who got me into my boot and walking with some trepidation but I eventually could walk unaided. The speech therapist whose job it was on Day 6 post surgery to see if I could speak well (derrr. who was ever going to stop me!) and to drink my first glass of water…as sips! It was GOOD. So grateful for that drink for sure. The dietitian had lots of advice and seemed well-versed in IBS issues and I was grateful for my first day of clear fluids on the 7th day post surgery. But I never wanted to try the soup again after the third time! I tolerated the jelly and the apple juice well. On the last day in hospital I was on smooth soft foods but there was little for me to choose from (that I liked!) but I was grateful to have some mashed potato and some baked tomato – which I had to smash up for it to ‘go down.

Each day brought me something to be grateful for. I was told by every medical professional just how amazingly well I was progressing. I had no measure for this but they obviously did and when I asked the Professor quite cheekily did he think I could go home on the weekend (I hoped Saturday) he said words to the effect ” keeping on going the way you are and I see no reason why not”. How grateful I was that I would be discharged in the minimum time (I was told initially 10-14 days and I went home on day 10!) And check me out with NO more tubes down the nose or up the nose..oh so grateful for that day! 

The person I am also incredibly grateful to is the anaesthetist who put drips and cannulas in 3 different places ( he said to ensure that if one stopped working in the marathon 11 hour surgery, he has a spare to use!). I might bruise easily, and now 3 weeks post-surgery my bruises have gone. They did not hurt me much. I was grateful for relatively little pain in the mouth and just a bit from the leg’s various sites where flesh and bone were harvested. From day two I only ever needed panadol – drip version first, then  liquid version as swallowing too challenging with the swelling inside my mouth.

There are many quiet and lonely times in hospital once evening comes and I was so grateful for my iphone for messages, texts and emails (as well as IG, twitter and FB) and my new Ipad for games, music and more. I also took my art things but the one I did enjoy the most was making mandalas each evening. The meditative effect for me was so for helpful in mitigating missing my husband and home.

I was grateful for the kindness of friends who understood my request for no visitors other than my husband and my daughter. Our son could not make it in. I had many, many well-wishes and some surprises dropped into my room for me. I did feel grateful for this. It is a distraction and a way in which to reinforce how we need to connect with our fellow humans!

 

On Saturday 15 July, after the minor (which led to some not great complications for my gut later at home) infection  was noted in an area of my leg & treated,  my husband arrived…I was already dressed (keen much?) then he had to pack up the bag and more. It was done with ease and I was grateful to leave my room of shelter, health recovery and protection  to be put in a wheelchair and taken to our car.

I am grateful if you have read to the end. It was interesting trying to recall events chronologically and without the photos to help me I would have struggled. This weekend ( as I write) I am feeling less and less foggy-brained and the gut is settling from the nasty antibiotics.

Have you ever had major surgery?

How was your recovery?

What were you grateful for?

Denyse.

3 weeks post-surgery. On our way home from post-op check up.

 

Joining Kylie Purtell for I Blog on Tuesdays here and Leanne at Deep Fried Fruit for Loving’ Life here on Thursday.

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest

I Am Grateful Today. Cancer Surgery#1 Part One. 2017.91.

I Am Grateful Today. Cancer Surgery#1. Part One. 2017.91.

Hello again!
Today I am listing many reasons I am grateful and am delighted to be back blogging and linking up with dear friends here with Leanne for Lovin’ Life Linky!

Day Before Surgery

Oh, and in case you did not know… I have returned home after my major cancer surgery which removed the inside top of my mouth, gums and teeth (ha! there were only 3 left…and bummer…no tooth fairy coin left either!). When I was in hospital I had PLENTY of thinking and reflecting time so a post about gratitude seems to fit my return to Lovin’ Life today!

This post is live two weeks after my 11 hour surgery on Thursday 6 July. The selected  photos and words are just a part of my grateful list.

I am doing my best to have them sequentially …enjoy!

Wednesday 5 July. Pre-Admission Day.

It was a well-planned departure (I am so that anyway) but I did have a tiny sense of ‘what if I don’t come back’ and sensibly did quite the paperwork tidy-up, prepared official documents so husband and daughter knew where they were, and left my bedroom and art room clean and tidy. The trip to Sydney (by now I had done 3 since diagnosis) so I am grateful that I built up my confidence through challenging my beliefs based on fear of driving on the M1 and ‘getting caught short’.

We arrived in plenty of time at Chris O’Brien Lifehouse (pictured)  for a myriad of health checks (all fine and dandy!) at pre-admission and handed over my life in forms…about 10 pages. There was no money to pay as our Teachers Health covered every.single.item*. Always very grateful we were both in it as young teachers then continued as a family always with top cover. The amount paid by them was in excess of  $21K.*not all doctors’ fees but that is ok.

We had booked overnight accommodation (cheap and cheerful as recommended by the hospital) as it was within 10 mins walking distance of Lifehouse. We were not impressed by the spartan set up however kindly the people were who supplied the accommodation so after our LAST night together for a while, B decided to bunk in with the grandkids and our daughter who live an hour away from Lifehouse. In retrospect I was incredibly grateful he did because as he said ‘it was great to see loving family faces!’.

Thursday 6 July. Day of Surgery.

I have no pictures! Fancy that! But I was grateful for a laugh when I got my phone back from B the next day and there was over 3 hours video of the inside of the phone cover which must have started when I handed it to him in Surgical area at 6.30 a.m.

Friday 7 July – Sunday 9 July. Intensive Care Unit.

After 11 hours of surgery I remember one fact about waking in what possibly was recovery but might have been ICU and it was nighttime. I asked ‘no tracheostomy?’ Of course, my brain tells me now I would not have been able to ask the question if I had, but I was intensely grateful that my surgery did not require this as I had been told it was possible.

In intensive care I was grateful each room was private and I could shut out sounds and light as I mostly needed to rest my eyes, not sleep. I liked that I could talk (a bit) to whoever came to check my obs. Loads of obs checks, especially my ‘mouth flap’. This was checked via a doppler ( a mini ultra-sound scanner) and each time I heard the reassuring beats I did thumbs up as I was incredibly grateful it was alive in me. The catheter came out on the second day and it was good to go to the loo (with help of course, as my leg was in a back slab). I am grateful I stopped caring about modesty. Let’s just get better is my motto!

By Sunday I was stir-crazy and when I heard they were waiting for a room to be ready on the ward I sure was pleased. It took a bit of time to do the transfer but I was grateful to say ‘bye bye’ and ‘thank you’ to ICU.

The Rest of My Stay Until Discharge on Saturday 15 July.

To be continued next Tuesday week where I will link up on I Blog on Tuesdays and the next Thursday when I will link up here again too.

I decided to do it this way as I am tiring and I have a lot to say! Who knew? Ok. I did.

Denyse.

Next Monday I re-start my #lifethisweek Link Up: Here are the prompts: They are also on the Home Page.

Mon 24 July: 28/52. Can’t Live Without.

Mon 31 July: 29/52. Winter.

Mon 7 Aug: 30/52. Birth Order.

Mon 14 Aug: 31/52. Ideal Meal.

Mon 21 Aug: 32/52. Selfie Time.

Mon 28 Aug 33/52. Mindfulness.

Mon 4 Sept 34/52. First Car/Bike.

Mon 11 Sept 35/52. Beach or Bush.

Mon 18 Sept 36/52. Taking Stock.

 

 

FacebooktwitterpinterestFacebooktwitterpinterest
FacebooktwitterpinterestFacebooktwitterpinterest