Wednesday 5th August 2020

COVID-19 Test Experience For Me. 33.1/2020.

COVID-19 Test Experience For Me. 33.1/2020.

It sure is a topical “event” around the world and now I am outlining my recent experience as a potential* COVID19 patient.

*no spoiler alert: the good news before you read any further is that I tested NEGATIVE and that’s great.

Friday 24 April 2020.

Morning

I woke with a sore throat that is not unusual for me to have.

I knew I had been a bit ‘hayfever-ish’ the day before as my eyes were a bit runny and when I saw my G.P. on Wednesday before, he thought it was an allergy type of thing with my eyes and use the drops I have.

I was determined to visit the beach for a walk as the weather was (still is!) amazing and felt up for it. Despite bit of a sore throat.

Loved my walk and on way back home bought some betadine throat gargle in case it worsened. I know it is not always helpful but I felt better for having it.

Afternoon.

Later in the afternoon as I was doing some art, I noticed that I felt a bit warmer than normal and so, took my temperature. It was over what is normal for me. It was then I recalled the earlier messages from the N.S.W. Premier and N.S.W. Health about getting a COVID-19 test even with the mildest of symptoms.

So after briefly chatting with my husband about doing this, I first called our G.P. I thought there was a protocol for testing. I wanted to be sure. It turns out, I could have (and did) call the Health Hotline: 1800 022 222 where that person entering my details and symptoms said “go get the test”. There is also a National Coronavirus Health Information Hotline 1800 020 080

Before rocking up to Wyong Hospital’s COVID-19 Centre, I rang first: 4394 9200 and they said come on down now and by 4.15 p.m. there I was.

I admit to a wee bit of trepidation knowing once I had started this information sharing…and agreeing to the testing I would now be part of the system and information shared between health professionals but I also had a better feeling that I needed to find out.

The hospital is literally up the road from us and the signage made it easy to find the clinic.

Here’s what happened next:

  • Waited outside the door until it was opened by a person fully covered in what I now know is par for health and safety of personnel: gown, gloves, mask
  • I was asked to clean my hands with sanitiser
  • I was given a mask to put on
  • The nurse then took my temperature (which has reverted to normal of course) and my pulse
  • I was asked a series of questions about risks/exposure: all of which were a negative from me
  • Then I was directed to person behind a screen who completed my contact details (which did need updating as Wyong Hospital community nursing staff were those who attended me at Gorokan after my cancer surgery in 2017)
  • Following that, I was given my plastic folder and asked to walk around the side of the room – a very large one, with arrows for directions and exit
  • I was greeted kindly (again, everyone was lovely and relaxed and helpful!) by a Registered Nurse who asked me to sit in a chair.
  • There were groups of chairs, all empty, set out in rows and columns with correct distancing between them.
  • The questions I was asked now were repeats of earlier ones (verifications) and then more including current health status and the only one I answered ‘yes’ to was about having cancer.
  • We chatted a bit about their day (it had been much busier than now where I was the only one) and about ‘back to school’ as she has one HS student
  • The test would be one taken from inside my nose reaching down to my throat and I mentioned the better nostril for me, post head and neck cancer reconstructions would be the left.
  • I was then asked to go to a partitioned room where another nurse greeted me in a kind and relaxed manner, indicating her preference for that nostril too as she was left-handed. Lefties unite I said.
  • Yes, the test is a tiny bit uncomfortable and it was over in a tick. No sneezing or tears…as an auto reaction, just “glad that’s done”.
  • I’d been given two sheets of information earlier and told, when I got home, to register for text results.
  • I was also told by the nurse earlier that as of now, I was to consider I have COVID19 and to self-isolate at home.
  • I followed the exit signs, clutching my 2 pieces of paper and drove home.

Self-Isolation At Home: Friday to Sunday 26 April.

This took a bit of a think on how to do it without impacting on my husband and me too much. Here’s what worked for us in a large house.

  • We literally stayed distant from each other physically.
  • We already have separate bedrooms
  • I have a space in the house where he does not enter and that is where my computer and art spaces are
  • The shared bathroom was now his, and I moved my things to the other bathroom. We use only one normally as who wants to clean 2?
  • In terms of food preparation and kitchen use, I wiped over every surface such as door and drawer handles etc then left the kitchen so my husband coulr get his dinner.
  • When he was done, I donned my disposable gloves and prepared my simple tea.
  • We sit in different rooms for TV and by 7.30 p.m. were back in our bedrooms.

The Next Day: A.N.Z.A.C. Day. More Self-Isolation. 

  • This became a repeat of the day before.
  • I also needed to have some time to think about how to manage this mindfully
  • Because of my cancer diagnosis (and long spells at home) and the recent weeks of staying home unless needing to go out for essential reasons I was able to come around to managing it well.
  • The small shopping needs we had we sought by my husband.
  • I did some art, I completed the blog post for tomorrow, I talked to Dad on the phone but did not mention this, I loved seeing the various way sA.N.Z.A.C. Day was commemorated in COVID-19 ways, and I went outside. I looked at nature and marvelled at my phone’s camera results….

Waiting for The Results.

I admit that waiting for this result was somewhat like waiting for cancer results so I guess I have had practice. However, I was hoping I would get the results before the Monday as we are hosting a visit from our granddaughter.

At the hospital I was told it could be anywhere from 3 days to 5 days. I understand erring on the longest possibilities.

I used the system from the NSW Health Pathology to receive my results by text and enrolled in that on the Friday evening.

I started feeling better from the sore throat as Saturday evening came and some of my tiredness had dissipated.

Nevertheless, until a negative result was received, I did have to act AS IF I was positive.

The Result: Sunday 26 April 2020.

Waking just after 8.00 a.m. I noticed a message on my phone.

It was from N.S.W. Health Health Pathology COVID-19 SMS Results Service.

Once I had located my unique pin, I received this:

Because none of those conditions applied to me, I was able to cease the self-isolation precautions.

I am not being anything other than grateful. I also know this COVID-19 can be anywhere and we all need to be vigilent.

But how amazing is the time between taking my test to receiving my result (it came in much earlier than I saw it) was: 36 hours. 

This is why I blogged about it.

To share my experience and to connect with anyone who may wish to know more.

I am sending my best wishes and appreciation to all who will continue to help those of us in the community taking risks of exposure as they work to help eradicate this virus.

I also send my best to those who will be returning to the unknown of schools and teaching in Term 2 in Australia and elsewhere.

This is just my experience, for my records too.

Have you been tested? How was the experience for you?

I do hope you are well.

Stay Safe.

Stay Well

Take Care.

Denyse.

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Two Years Ago: Before My Cancer Was Diagnosed. Pt 3. 35/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 3. 35/2019.

Thanks to readers who have commented on these posts.

They are, in some ways, very personal and maybe a bit indulgent but they are going a long way for me to feel better and recovering well from my version of head and neck cancer, found in my upper gums and under one lip.

The first two posts about the two years ago can be found here and here.

My last words on the previous post were these:

“take the teeth and bridge out, I HAVE to know what is underneath!”. I was a bit better-mannered than that with my request to my dentist but inside I felt these words more!

Why Did I Want The Teeth Taken Out?

For well over 6 months from late 2016 into 2017  this dentist and I worked on “what could be going on with my gums”.

This is why.

  • My upper gums were sore and red. They felt that way in part of my upper palate (roof of my mouth).
  • There was a ‘feeling’ of skin tearing up behind the covered part of the gums as I had a bridge permanently in my mouth.
  • The bridge (and a crown) had been added to the 6 front teeth spaces to add to my appearance and function as the original teeth had been heavily filled and already had been treated to the maximum by the dentist in Castle Hill in 2010-2011.
  • I went along with this procedure without question as I was promised it would be better. It was paid for by Medicare for people like me with chronic dental issues back then.
  • I admit I was ignorant of the what and how of the procedure but it seemed to be right. I trusted the dentist.
  • What did happen over and over from then until April 2017 is each new and subsequent dentist (3 in total)  told me “You are not cleaning behind the bridge properly”.
  • I did what I could. It was a very awkward and uneven space and even the dentists were challenged with their instruments.
  • “You have candida” I was often told. Yes, OK. I took so many fungalin tablets and added nilstat as a mouthwash only to find no change, and diarrheoa as a side affect. NOT something I welcomed with IBS already the ‘beast within’.

The mouth still hurt.

I had thorough cleaning at the dentist as late as March 2017.

The mouth still hurt.

I watched the gums slowly creep over the top of the front teeth.

The mouth hurt more.

But still this dentist wanted to investigate more even though he said theoretically he could take the teeth and bridge out.

I went through trying to get myself tested for nickel sensitivity – nickel is part of the bridge. I chose not to. I wanted action.

I could not eat much at all – combination of the very sore mouth and anxiety about it and good ole IBS.

So, the deal was struck. My teeth and the bridge they were on were coming out of my mouth on 6 April.

But wait….

I am too scared to both travel AND to do this! Right?

From my journal the day before:

On Wed 5 April I was nervous about the upcoming dentist trip

I did go out & do things but the “enormity” of what was ahead overwhelmed me

I broke down & just couldn’t see how I could deal with it

B was good at listening but I knew that despite the dread & worry & fear IF I didn’t go through with it it would be :

Avoiding

  • Would make it worse
  • I’d not get my mouth fixed

So I took steps to make sure I got there:

1. 1/4 Valium in arvo & then at night helped reduce the internal rumblings

2. I told myself it was a positive to be getting it done as it’s troubled me for so long I couldn’t let it go on & on

3. I needed to tell myself the outcome & process had to happen. I stopped thinking there was doubt or other choices. I needed to own this

4. I ate small because I was scared of IBS but that’s not new.

5. I knew I could take immodium if there was a reason

6. I used the hypnosis from audible in a big way

7. I had B taking me & he agreed to do it anything to make it work.

The day came. It was just after lunch. Not that I ate any! Yes, my dear husband did drive me and yes, I took medication as advised. I was warmly greeted by the team who really understood this was hard for me. I had my iphone and  earbuds and a hypnosis session ready. It started with LOTS of needles and reassurance all the way. I could give a signal to stop (I did only need that to tell them it was still hurting too much). I could also ask for a break to go to the loo. I did that once. By the time I decided I had enough…it was done. I was surprised. My husband had sat in the room reading as I was treated and it was nice to know he was there.

I knew there would be a denture put in – and whilst that did not hurt then  it did later. I had the model made the week before. So, then I was shown the teeth and bridge. I took a photo but not the teeth with me. The dentist’s opinion at the time was that everything looked OK gum and bone wise and I would see him the following week. I just needed to get back in the car and home. It was done! Over.

Afterwards I recorded this:

 Mouth sore & swollen

 Ice packs on my mouth

Taking medication – neurofen & anti-biotic

 Still got some bleeding (6 hours later)

Headache & tired

 Ate squashed pear, yoghurt & grated cheese & PButter

Very proud of myself and was told by B I was great.

Now if only IBS would bugger off!

Back to dentist next week to check it out & adjust the partial denture.

It

Is

Over.

Then I had about a week of pretty intense pain manipulating the partial denture in and out of the top gums. The gums were sore. I just expected that I guess. The following week, I re-visited the dentist alone with more self-confidence albeit in pain, where he adjusted the denture, told me what to look out for and I would see him in around 4-5 weeks.

And so, within that period of waiting, things did not progress as well as either of us hoped.

There will be a fourth part to this lead up to the Two Years Since My Cancer Diagnosis.

I hope that sharing my story is somewhat helpful to you. However, I must add, as my Head and Neck Surgeon told me:

“Denyse your cancer is rare and you getting it with no risk factors (smoking, drinking) is even rarer”

With Prof Clark – My Head and Neck Surgeon at Chris O’Brien Lifehouse.

Thanks for being part of the journey in these posts I am writing…for good reason and for information shared as I so often need to do since my Head and Neck cancer diagnosis.

Denyse.

Joining with Sue and Leanne here for Wednesday’s Midlife Share The Love linky,

With Leanne on Thursday for Lovin Life link up here AND with Alicia on Fridays for Open Slather here.

Thank you all for your link ups.

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Two Years Ago: Before My Cancer Was Diagnosed. Pt 2. 31/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 2. 31/2019.

For anyone affected by a life-changing diagnosis that comes after some time of illness or maybe there is no sign, time becomes a part of memories of ‘back then’.

In writing here on my blog, I know I am helping myself as I continue to process my thoughts, actions and concerns relating to my eventual and pretty shocking diagnosis is a rare cancer in my mouth. For those who would like to read about this in the series of posts here is the link to the page called Denyse – Head & Neck Cancer.

It was recently that trawling through on-line journals I realised how much I had gone through along the way so I wrote the first post in this series is here. 

This post takes a different theme which was relevant to why and how I was feeling and acting in those months from December 2016 into May 2017.

March 2017.

It must be just me. I don’t know how to settle well into my life now it’s over 2 years since we left Sydney and are making a retirement life for us. How come “I” cannot settle. What is WRONG with me? My husband is doing it with ease. In fact, he is already volunteering in two community organisations, is planning to continue his tertiary studies. Me? I face each morning with trepidation. I find it hard to get up. To what, I ask. I go through the motions of making it look like I am OK. But I cannot fool myself nor my husband. It’s me, I just do NOT know what is wrong with me…..I know my GP says I am somewhat anxious but it’s for a reason which related to stress about my IBS. She tries me on some anti-depressant meds briefly but they affect my gut. I see my psychologist who again tells me, “you need to continue exposure therapy.” I am losing weight because I am too scared to eat because of IBS.

This look on my face here is me gaunt and showing the fear within even with my then-smile. Underneath those teeth was …..no-one knew.

What Did I Do?

More of what seemed to help me. At least it passed the time. It did not ease the knot in my gut for long but I was focussing on self-help. I must have listened to 100s of hours from many. These are people whose words I continue to value and have all of their CDs still. I listen to few now, but back then I thought they were helpful for my mind to slow a little. I used to listen in a semi-meditative way or as I was making some mandalas or patterns. I found these people’s words matched a lot of what I was hearing from my husband and my psychologist too.

My blog was a great spot for me to gather my thoughts and be interested in others. I was so pleased that I HAD made my blogging a priority. Mind you, there were days when I was not interested in connecting on line…but I did and continue to do so in the overall goal of remaining connected.

I probably did not let on to many other than my poor husband just how bad I was feeling on some occasions. I felt bad about feeling bad! I wondered if there was any chance I could feel ‘like I hoped’. My former GP who I continued to see in tandem with my current one for the next 2 months, was kindly but even she seemed to run out of reasons why I continued to feel so anxious.

The age old question: Was I anxious because of the likelihood of IBS or was the likelihood of IBS making me anxious?

I tried SO hard to make my inner life a better experience! I did art of one kind or another most days, I ventured out on short drives when I felt well enough, I cooked a little bit but I was so anxious about people visiting I could not enjoy the company of family nor was there any way I would drive to Sydney to see anyone. Nope. Not on.

Here are some of the many sayings that I hoped to absorb and integrate into my life. These were posted on Instagram. That account was hacked in May so I no longer have the IG versions, just my photos.

And all this time, my mouth hurt.

  • The skin behind the upper gums where the bridge was continued to be inflamed.
  • No the extra cleaning done in early March (see first post) had not changed anything.
  • The skin was growing over the top of the front teeth.
  • This matter concerned me greatly. I know I told my husband often enough.
  • But, as no-one in the dental or medical field had deemed this to be of any great consequence, I continued on.

Sadly, in pain emotionally and physically.

I hope that this post is helpful in understanding that my internal dilemma was a huge influence as I thought “I made all of this happen“. It would appear, that I may have been thinking about cancer far longer than even I realised. It IS true.

Next time: I could not bear it any longer….. “take the teeth and bridge out, I HAVE to know what is underneath!”.

Denyse.

Joining in these link ups:

MidLife Share the Love: Here on Wednesdays

Lovin’ Life: Here on Thursdays

Open Slather: Here on Fridays.

Do visit these link ups and join in the reading and commenting. We ALL need each other here in the land of blogging and comments are our “GOLD”.

 

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Two Years Ago: Before My Cancer Was Diagnosed. Pt 1. 20/2019.

Two Years Ago: Before My Cancer Was Diagnosed. Pt 1. 20/2019.

In this series of posts relating to my head and neck cancer, specifically (quoting from pathology reports after my 6 July 2017 surgery):

hybrid squamous cell carcinoma (in my upper gums and under my top lip) showing features of both verrucous squamous cell carcinoma and conventional squamous cell carcinoma

I am writing about the times of leading up to the day I was told cancer was in my mouth. I think I thought I had cancer of some kind for a year or more earlier. But, to the medical and dental profession’s credit, my cancer is both rare (head and neck cancer is around 3% of the population) and even rarer in someone like me with no risk factors.

There is another BIG reason I am writing this. I need to feel I can say now what I could not before ….because I did not know what was wrong! I thought it was my emotional health letting me down. Again. I did so much to help myself. Therapy, medication, being outside, doing volunteer work, having some hobbies, and more. NOTHING gave me an answer for what was changing in me and I was a nervous nelly anyway …but deep down, cancer was on my mind.

Below are photos of just some of the examples I did to help me emotionally. Mind you, they have indeed helped me still now that I know it was cancer but back then, I was following instructions!

To blog about this is helpful for me

I am re-living a time of memories of the ‘unknown’ and also one in which I was doing all I could in an incredibly challenging time in my life: selling up in Sydney, moving to the Central coast , getting sad about leaving our family and finishing my worklife after decades in education. Two years on, I KNOW the sometimes good that has come from my cancer diagnosis and I acknowledge that . It has also been, and continues to be as hard path to walk but I am doing the best I can.

If my post are helpful to others, then I am also glad to write them.

From my memory and using my word journal.

In preparation for my teeth to be deep cleaned by AB after consensus from the specialist gum dentist was same as 3 other dentists (2014-2017) & a biopsy on a white patch under top lip near gum: candida.
Fungalin did not help. Mouth rinses with nilstat did not help. Already gums were over growing top teeth (bridge at front) & behind on soft palate was constantly red & irritated for at least a year.
Instuctions to “clean better” … under an impossible to reach back of a bridge just served to make ME feel at fault for my sore mouth!

2nd March 2017

My dentist is AB, and I had been seeing me for around a year & knew my dental history. I was a fearful person but always had 6 month check ups & had gone through extractions, fillings & root canals. After I did not pursue allergy-test for nickel (component in the bridge) as AB researched the composition of 2011 installed bridge done in Sydney by HS, I was coming back to him for a ‘deep clean’ on 2nd March 2017.

“I took immodium as I was wary of IBS coming on my 30 minute drive from home to his surgery. I was so stressed about that & whether I could make it but I was also determined to see that I did.

Having done some practice “exposure” therapy in small bits, I knew I had to have this “deep clean” of my upper teeth & bridge as the pain, gum growth & irritation had been there too long.

For most of my adult life I had felt “the teeth troubles I had were my fault” as I had a sweet tooth. There was a part of me that felt guilty about my mouth!

So, I set off on the road the most physically anxious I’ve been but in control of the drive in my car. I had one loo stop then arrived at the dentist. I was so stressed that when I finally saw AB & his dental nurse I broke down. Through my tears I said how worried I’d been & how judged I’d always felt about teeth & I was grateful they were helping me.

They were very kind & reassuring & I popped in my ear buds & was ready to listen to my favourite story teller, William McInnes. His voice is like a balm for me especially when telling the tales from his life as a kid.

It took so many needles to numb the area at the top where I’d had gum over growth & soreness for almost a year now . AB was to deep clean & get right into the top area where my bridge sat containing my front teeth.

As I didn’t quite know what to expect & what the outcome would be I was naturally tense. However to my credit I stayed & got it done only asking how much longer (10 mins) & telling him when it still hurt (more needles required)

William McInnes voice helped distract me from the noises of water, sucker & instruments as I visualised as much of that as I could. From time to time I had to rinse out & the blood & water that were going down the drain shocked me.
I felt quite shaky when it was done & it took more than 90 minutes I believe.

The ‘good’ news is AB believes all irritation is due to left over cement from when it was put in & debris accumulated in spaces under the bridge.
I have candida & need funglin for a while. I could come back in 3 weeks for check up if I like & he hopes all will improve over time.

They were so lovely & kind even in their front office. I was touched.
It was a trauma in a way because I had to beat 2 things/ worry re IBS & treatment & outcome.

So… I did well considering how much it took out of me to get there!

Boy that was a huge exposure therapy success.

Quiet arvo at home getting over it all
then wanted to see the sky over beach as wet weather is coming.

Spent an hour taking it in & pics too
Soup for dinner & mouth actually feels bit better already Have a special floss to use.”

Making the best effort to ‘be’ what I did not feel. Two months before I knew I had cancer. March 2017.

Stand by for what happened next.

Denyse.

Joining with Alicia who is hosting Open Slather on Fridays now! Yay for being back…and a different day. Here is the link.

 

 

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Head & Neck Cancer: “Beyond Five” Ambassadorship.2018.130.

Head & Neck Cancer:”Beyond Five” Ambassadorship.2018.130.

Last week I wrote a post called Farewell and Hello. It was pretty long so I stopped at Farewell promising to be back for Hello. Here we go!

Regular followers here know that I was diagnosed with head and neck cancer (squamous cell carcinoma) in my upper gums and under the top lip. The whole story is here, in posts, from the day I was told until the recent post on adjusting my eating requirements when I am out of the house.

Hello, I am now a Beyond Five Ambassador!

How this came about was partly after this day in October 2018 when I was back at ‘my’ hospital Chris O’Brien Lifehouse, but I had offered earlier this year if there was any way I could help spread the news about head and cancer awareness I would like to do so. I had already been sharing the work of Beyond Five here on the blog for World Head and Neck Cancer Day 2018.

Following that day, the Board of Beyond Five met, Sr Froggatt and Professor Clark are board members and Nadia Rosin is Manager, Business & Communications,  and I then received a formal letter of invitation to become a Beyond Five Ambassador.

Role of Community Ambassador

  • • Share your personal head and neck cancer story for use in Beyond Five communication e.g. website, social media portals etc.
  • • Raise awareness of Beyond Five through family, friends, other personal connections.
  • • Where possible, attend events e.g. patient support group meetings, education days to help raise awareness of Beyond Five.
  • • Support Beyond Five grant applications where relevant e.g. as a consumer representative.
  • • Provide feedback to Beyond Five to help us improve and develop the way we work.

About Beyond Five.

Background

Beyond Five was established in December 2014 and is Australia’s only not-for-profit organisation supporting patients with head and neck cancer, caregivers, family and health professionals.

Beyond Five was established to provide evidence based, comprehensive, easy to understand and easy to access information to everyone, regardless of where they live.

Beyond Five is the first organisation in Australia supporting patients and their families through their cancer journey, from diagnosis to treatment and life after cancer.

Mission

Beyond Five’s mission is to improve the quality of life of everyone affected by head and neck cancer through education and access to support and to raise awareness of head and neck cancer nationally. We are committed to working collaboratively with all specialties across Australia to achieve our mission.

 

I have joined the inaugural Ambassador, Julie McCrossin and Marty Doyle too. Their stories and mine, can now be found here on the Beyond Five site. There will be more ‘thinking time’ for my involvement and what form it may take as everyone is going to be on a break soon. We are getting together in February 2019. I look forward to helping where I can especially now I am post almost all of my cancer treatments and now in ‘check-up and check-in’ mode.

I know that I am keen and ready to help others learn more about head and neck cancer as it is not well-known. In fact I had no idea you could get squamous cell carcinoma inside your mouth (and other areas of the skin inside the head & neck region, till my day of diagnosis in May 2017.

And here we are sending Season’s Greetings.

I wish that no-one had cancer of any kind, of course, but the fact of life is we do. I want as many do, to help pay back the time and effort and research that has gone into the amazing surgeries and mouth reconstructions I had. That I can smile and eat well again is testament to the wonderful work of my team and their integration of allied professionals too. I have written posts about how many helped get me well again. Now, it’s onward….and to say I am glad to be an Ambassador for Beyond Five is an understatement. It is an honour and a privilege to be in this new role.

I want to do the role justice, and help others as I too have been helped.

Thank you to the Board of Beyond Five for entrusting me with this role as your Ambassador.

Denyse.

Joining with Sue and Leanne here for Midlife Share the Love and with Leanne here for Lovin Life link up.

 

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Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

I am dedicating this post to the memory of a lovely woman whose life was cut too short by cancer. Chelsea, my friend Leanne’s step-daughter lived life to the max. Cancer may have been ‘in her’ but cancer did not take her spirit nor her love of life…and for her family including her husband and your daughter. My shared experience with Chelsea was that we were both patients of Chris O’Brien Lifehouse and because of that connection I wrote one of the Letters to Chelsea Leanne mentions on her blog.

Thank you for sharing the love and the life of Chelsea dear Leanne.

 

Two Steps Forward. One Step Back. My Cancer Recovery Update. 2018.126.

Update to update: even though I have outlined what was disappointing to me in this post which was an event from last weekend it has also taught me more about my capabilities in eating than I knew. I like many had tended to think eating with new teeth in my gums would be ‘back to what it was’. Not so, and I am now being more realistic and flexible.

Yesterday, 30 November, I turned 69. I had a wonderful and low key birthday celebration at a morning tea for two with my dear husband. We chatted, ate well, had our favourite drinks – small latte with an extra shot for me and English breakfast tea for him. Afterwards we wandered through the grounds of this lovely nursery, bought a plant each and came home to a relaxing afternoon spent at home. It really was just as I would have liked.

Except for this:

  • it has taken me sometime to adapt to some extra teeth added to my own on the lower jaw and I am very conscious of how much ‘saliva’ escapes and am constantly wiping – especially if I am talking…and drinking/eating. But with my husband or by myself I just get on with the ‘tidying up’ and enjoy what I can
  • I know my upper lip is shrinking in. I accept that. But, did you know you cannot ‘blow out the candle on your cake’ unless you get much closer…and I also cannot drink with a straw as there is no vacuum made in my mouth
  • I have a small but significant pain area in my….index left hand finger…the dominant one..the one where I write, draw and play. I have had pain in the tip of it before, as there is significant arthritis in the joint below. But not as bad as this. Our G.P. could not see anything affecting it from the outside, so he advised anti-inflammatories for a few days.
  • both of the above are so small, in the overall scheme of things I know, but I am writing about them (not using the left index finger!) because they have both given me cause for concern today especially.

Out Socially for Lunch.

  • Last Monday I had lunch at Chris O’Brien Lifehouse and was asked what I could eat. I nominated a simple cheese white bread sandwich and a lemon slice I had tried there before. Whilst I did not eat more than half of the cheese sandwich, I managed and did not feel as self-conscious as I thought. I also took my leftovers home! Win.
  • Today, I ventured to a local large club for a Christmas lunch get-t0gether with the Head and Neck Cancer group I am in. It was the first time I have gone out for anything other than coffee and cake. I gave it my best shot. It is a very friendly group and I did get to know people more today in this social setting.
  • What I found though was a reality check for me about my current status in recovery as a Head and Neck cancer patient.
  • Knowing I ‘could’ have taken the easy way out and ordered a safe coffee and cake that I knew I could handle, I decided to join in and actually have lunch! Remember I have only ever eaten a meal at home for over 2 years.
  • At the ordering desk, I asked for a small meal: I could see a baked dinner was on offer and was pretty sure I could manage some meat, potatoes, pumpkin and grave. “No”. Sorry,  we do not do small meals on Saturdays. “Can I have just one slice of meat with a couple of the vegies?” “No”. No offer of a kids’ meal (I think they would have refused that too) so I asked could I have just the potato and pumpkin and gravy. “Yes”.
  • OK. I thought, well this is a lesson. Not everyone ‘gets what they think they can’ and also maybe this establishment does not cater for people with different needs. And, I stayed quiet about it. I was a guest. Everyone else at the table was either way down the cancer recovery trail than me or could find foods to suit them.
  • I could eat one half of each vegetable and then as it takes me a while, it got cold. I had leftovers and asked if I could take them home. “No”.
  • I went and got a coffee later, no cake, chatted some more then drove home and ate….some lunch.

Why Write This?

  • It helps me to process it and maybe others who know what I am talking about can understand
  • The fact that I may have given myself something creative to do over the past 3 days as I needed to has not helped my mood much. I really miss using my finger.
  • I am hopeful, that by being patient and having the meds it will come good. Or I will go back to the G.P.
  • I am concerned I over-expect of myself, so writing this is helping me process
  • Maybe I just needed to ‘get it off my chest’ as they say!
  • It is not a post where I am wanting any sympathy but I did get insight into a world out there today that, in some respects, has no flexibility to meet special needs
  • I also know people face this as a challenge every.single.day
  • I am wondering if my ‘reaction’ was a bit of an over-reaction to a day which I had wanted to go well, and in terms of socialisation it did.
  • But it came up short for me, the head and neck cancer patient getting used to eating again in a regular environment, and so I wonder if I need to be more prepared for the situations I place myself in as I change from ‘no eating’ to ‘limited eating’ to ‘regular eating’.

It feels like two steps forward and one step back….but probably it is more like five steps forward and maybe one step back!

And maybe I will take a little container of my own next time for left-overs!

Thanks for reading!!

Denyse.

P.S. It IS most unusual for me to post on a weekend but for my emotional health I am…and I already feel better for writing it out. THIS is why I blog!!

Linking up with Leanne here for Lovin’ Life on Thursday…sending love to Leanne and her family. xx

 

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November Notes #2. 2018.116.

November Notes #2. 2018.116.

This month, 5 years ago, a unique and amazing event occurred.

I did not know how much this event would affect me 18 months ago.

Chris O’Brien Lifehouse: Comprehensive Cancer Hospital opened in November 2013.

I am incredibly grateful for the vision of both the late Professor Chris O’Brien OAM and his lovely wife Gail, AO.

Chris, who was to die from brain cancer in 2009 before the hospital started, had a vision based on his experience as a Head and Neck surgeon and then a patient with cancer. That there needed to be a place like a ‘one stop shop’ for cancer patients and families as there was so much to manage when someone is diagnosed with cancer without more added to the stress such as visiting as number of different places for treatment.

For Gail, on receipt of her AO said however, the award is a reflection of the community of which she feels lucky to be a part. “I could not be more proud of our independent, benevolent hospital and the care we give our patients,” she says.

Her words are a tremendous reminder to all of us of the importance of Chris O’Brien’s mission. With this award we are encouraged to strive for the best at all times, and to continue to turn your support into a positive force in the fight against cancer.

A chance meeting here I had longed for. I met the late Prof Chris O’Brien, Gail.

Even though I cannot be there for this week of Open Days and Celebration, I am there in spirit.

From my first, scared and very tense visit of over 2.5 hours on Thursday 18 May 2017, through to major surgery on 6 July 2017 and my excellent recovery in ICU and on the wards, through to check-ups and tests and then for more day surgeries on 15 November 2017, 6 February 2018 and 16 May 2018 it is always a rich and inclusive experience to be at Lifehouse. Of course, I have been back for follow-ups and to chat with people I would now call friends. Who knew that would be how I would interact with a hospital and having cancer! Not I!

This one session, held on Monday 5 November when I have to be at Westmead  to see the prosthodontist, features my Head and Neck Surgeon, Professor Jonathan Clark who was trained by Professor Chris O’Brien. How fortunate am I!

Jonathan said ‘he was stoked’ about how my teeth/mouth worked out.

Eventbrite for Organizers's photo.

NOV5

Innovation and technology in cancer surgery

Public

More here about the week of celebration, innovation, care and sharing from Chris O’Brien Lifehouse.
My little collage and tribute to wish Chris O’Brien Lifehouse congratulations on 5 years of helping patients like me!

Do you know of the great work done by the late Professor Chris O’Brien? He became, as his family remembers, the unexpected ‘star’ of the long-running T.V. documentary called R.P.A. That’s short for Royal Prince Alfred – the hospital opposite Chris O’Brien Lifehouse.

Thank you to you all at Lifehouse!

Denyse.

Joining with Leanne who also  knows a lot about the work at Chris O’Brien Lifehouse, here for Lovin Life linky.

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But It IS Still About Cancer. 2018.103.

But It IS Still About Cancer. 2018.103.

Since spending much of last Tuesday, 2nd October, at Chris O’Brien Lifehouse (my cancer hospital) in Sydney, I have been affected by the fact that the reason I am in need of regular visits is because I have cancer. Specifically a Head and Neck cancer that was removed from my maxilla and upper lip named:

“Hybrid squamous cell carcinoma showing features of both verrucous squamous cell carcinoma & conventional squamous cell carcinoma”

On Tuesday I got a copy of the Histopathology report from 6 July 2017 surgery. It was ‘less confronting’ to read from this distance of time but it did have words in it I found hard to read.

With no risks per se, other than age, it seems my cancer took hold. I reckon it was there for many months before it was discovered after having my bridge/teeth removed when the gums were so sore and growing over the teeth (my request to do so in January 2017 was not heeded until April 2017). Diagnosis came in mid May 2017.

Why am I writing this now?

Because after all the surgeries (4 in less than one year), and many, many visits back to Westmead for my prosthodontist to make my mouth ready to accept the upper prosthesis of teeth, I thought I was almost done.

I am not.

Cancer is and will always ‘be there’ and in fact, my Professor and lovely Cate, reminded me “It IS about cancer” and that is why I come back for check ups and need to be vigilant myself about any changes.

My day of catching up, meeting people and doing my trip to Sydney independently was wonderful and I am so grateful that all of these people care about me and helping others with cancer. But it came home, forcefully, and is affecting me today with some sadness;

Cancer is always there. I had let it hide for a while behind everything else I was doing. I appreciate you reading this far! It is important, always, once I have something impact me as this has, that I share.

My husband is a wonderful person I can chat with always and I saw my GP to update him as a de-brief.

But before I go on, I had a TREMENDOUS day on Tuesday, noteworthy too because it was the first time I had driven myself to Chris O’Brien Lifehouse.

Asking Others For Their Thoughts.

I asked around  facebook friends who I know are through the active stage of treatments for their thoughts and some kindly replied with these words.

From S.:

“I’m past the ‘active’ part of my treatment, I’ve had surgery and radiation. Now I take a once a day tablet to prevent recurrence and I got 12 months all clear. But some days I feel just awful with fatigue and other side effects. I spend whole afternoons sleeping on the couch. I don’t feel like myself and it’s really hard when people say ‘oh you must be back to normal now’. I’m not back to normal and I don’t know if I ever will be. The weight of expectation (my own and others) feels so heavy and overwhelming sometimes. Depression, anxiety and feeling down even though you survived cancer feels inevitable and like I am lacking gratitude for my recovery. I’m not, it’s just hard”

From V.:

For me post cancer treatment is a mixed bag. I’m so grateful for my recovery but the fear and uncertainty for the future is still there. It’s a monkey on your back forever and you have to find a way to live with that monkey. The monkey is very loud and cheeky at times. Other times I give my monkey a time out and she sulks in the corner. At my recent follow up appointment I sat in a waiting room full of women ( I had early stage breast cancer).   They all had that haunted ‘how in the hell did I end up here’ look on their face and you just bravely smile at each other without any need for words.

From S.:

It’s my cancerversary on Tuesday so I’ll be blogging about it too! I don’t think the cancer shadow ever goes away but I try not to let the worry of it steal my joy of today.

From M:

 The elation of hearing the words “all clear” faded more quickly than I imagined and in its place was anxiety. Having been so closely under the microscope for so long,  I felt anxious that the cancer might return and it wouldn’t be spotted. Over time, this does ease and I look forward to my six-monthly check ups for continued reassurance that all is ok.

From M in N.Z.:

It’s normal to have a slump in mood after treatment ends. I availed myself of the Cancer Society psychologists who are trained to help us deal with the transition from treatment to the new normal.

I also went to the NSW Cancer Council website and found this article about ‘after the cancer treatment stage’.

Can cancer be a positive experience?

  • Many people find there are positive aspects to having cancer. Some even refer to the disease as a life-changing experience.
  • Cancer may cause you to re-examine your life choices, and may motivate you to travel, take up new activities or make lifestyle changes (e.g. starting exercise or quitting smoking). This shift is often gradual, as even positive change can take getting used to.
  • After treatment, some people want to help improve the cancer experience for others through advocacy or volunteer work.

Read more at https://www.cancercouncil.com.au/15289/b1000/living-well-after-cancer-45/living-well-after-cancer-back-to-normal/#sUFxCMjbDj1ZGQz4.99

New friend to me, and known to many is journalist and M.C.  Julie McCrossin, who is now 5 years down the track from her Head and Neck cancer diagnosis and she sent me here, to her podcasts for the Cancer Council, and this one of fear I listened to again.

Liverpool Hospital Head and Neck Patient Support Group listening to Dr Ben Smith, Ingham Institute on cancer recurrence anxiety. Learn more about managing anxiety. Listen to The Thing About Cancer Managing Fear podcast cancercouncil.com.au/podcasts/episo… @beyondfiveorg @CCNewSouthWales http://feeds.soundcloud.com/users/soundcloud:users:314217701/sounds.rss

Julie said “I find the fear catches me unawares, like on my recent birthday”

Thank you friends for sharing.

So, I am not unique.

Always good to know.

And I can share my worries and fears with others who ‘get it’.

Having cancer never really ends, but I am always grateful for the friendships and new experiences I am having as a result of cancer.

Thank you one and all.

Denyse.

Joining with Kylie for I Blog on Tuesdays here and with Sue and Leanne here on Wednesdays.

 

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