Sunday 22nd May 2022

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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What Is The Hard* Thing? Part Two. 2018.94.

What Is The Hard* Thing? Part Two. 2018.94.

Last week I began this topic here and had a number of commenters who added their own hard things to the discussion.

What was common to many was the fact that even though they did not want to really do “their hard thing” they were prepared to give it a go and in most cases were pleased to have done so.

That mirrors my own experiences.

Thank you for sharing, everyone.

I found a couple of websites here for those who want to learn more, here and here.

Remember this is not an advice post, merely my story. Wikipedia has also provided a quote.

Exposure therapy is a technique in behaviour therapy thought to help treat anxiety disorders. Exposure therapy involves exposing the target patient to the anxiety source or its context without the intention to cause any danger. Doing so is thought to help them overcome their anxiety or distress.

About (My) Exposure Therapy.

I am not a trained psychologist nor therapist but I am someone who has been taught what exposure therapy is and whilst I did not like its title (I called it my challenges!) I can outline how it was explained for me.

My psychologist brought up exposure therapy as part of her helping me learn what I had to do next after getting myself more confident about some social things I had previously resisted. These included driving to Sydney and going to the Dentist. However, I was resistant to learning how it could help me conquer my fear about IBS and getting ‘caught’ short.

She outlined a list of 1 -10 and then asked me to tell her hardest (the 10 end) and easiest (the 1 end) activities I would be prepared to try and then to do them before the next session and report back. Exposure therapy continued to be resisted by me even though I had the knowledge, and a counselling-trained husband encouraging me. What to do? Nothing was improving, so I did some of the challenges at the easier end:

  • go out in the car about 15 minutes and not go to the toilet just to check I am ok,
  • go out again and not take an immodium in my bag just in case
  • go out for a longer time and not race home because it is too hard not to be sure about my IBS.

And then I HAD to face my worst fear and do a trip to Sydney to Lifehouse, see surgeons about my newly (24 hours previously) diagnosed cancer and be a passenger in the car. Three things! My G.P. said “take the valium, take the immodium” and my husband stopped at any loo along the way. I DID it all. Yes, with some drug help but no IBS.

That changed things a LOT. It did not happen just from that ONE experience…I had many more drives like that to face and surgeries but it was the beginning of getting better acquainted with of what I COULD manage by my thinking and doing.

In fact by early March 2018 I decided I could now drive myself to Sydney for the many treatments at Westmead Hospital. Yes, I still do get some IBS in the days leading up but I manage it. No, I do not scold myself any more nor cry about it. I get on with it. It will never be easy-peasy but I will continue to have my mind “do the hard things” and not be beaten by the anxiety of having IBS. By the way, this photo below is me having finished my 23rd session of measuring, treating and fitting at Westmead Oral Sciences. I drove myself to 18 of these!

Monday 10 September with my prosthodontist and nurse. No more visits for 4 weeks!

My Added Story.

Way before cancer and me learning about exposure therapy but when IBS was robbing me of experiences such as visitign the family in Sydney or going there for a social reason, I used to push myself to do some to these as it was “too hard” not to do them if that makes sense. One was (and still is) a family-duty visit to see my elderly father. I say duty because I really do not enjoy these visits much yet I also want to ensure he is OK and leave some meals and snacks I make for him. A long time ago, he tried to understand my IBS and made adjustments to my visits so we just stay in his apartment and talk. The times he insisted on going out for a meal or snack…well, they ended badly for me so he compromised.

With Dad – early 2018.

When I drove back home up to the Central Coast from the Northern Beaches  in the years preceding my cancer diagnosis I always stopped here. Sometimes I still do. In this space of nature, just off the busy and noisy M1, I get a sense of calm and success at having met that challenge of the journey and the reason. When I was there last week, I made this little video.

That’s not quite it from me in terms of the hard things.

What I have realised since even thinking about this post, is how much I do need to continue to encourage myself to take part in life’s changes. You see, I thought getting my teeth would be awesome and it is, but it added another layer of thinking to my concerns…so, if I can eat what I want to eat after so long, what will it be like if I become very overweight again and cannot fit into the clothes I bought in the last 12 months? I tells ya, it never goes away does it…this hard thing!

Comfort Zones.

No such thing really. Well, in my opinion, sitting or staying in your comfort zone helps you stay stuck.  was in mine for a while when I would go nowhere but when I think more of it is was a DIScomfort zone. I did not like the me that could not get herself motivated* to go again.

*I have not been diagnosed with clinical depression nor anxiety. I have been affected by reactive depression (sadness and tears) but that often resolves within a day. My ‘anxiety’ is more of a worry thing and has been part of me since I was a teen. My doctors and psychologists believe I am managing well. The very low dose, old fashioned anti-depressant I am on each evening is to help me sleep and it s l o w s  down my inner gut workings. If you have been diagnosed with either or both: depression and anxiety, then you should speak to your health professional about the types of things related to exposure therapy.

Moving On. My Next Challenge!! 

I am going to be OK as long as I eat well and mindfully because when I was very overweight I ate mindlessly most of the time and to stuff down feelings. See here, if you have not read my story. So, I AM different to the Denyse I was then and I have new and better skills to manage my emotions and life since cancer.

Wish me luck!

Hope you are all doing well too.

Denyse.

Joining with Kylie here for I Blog On Tuesdays and with Sue and Leanne here for Midlife Share The Love link up.

 

 

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It’s More Surgery For Me. 2018.40.

It’s More Surgery For Me. 2018.40.

In the overall scheme of things (OSOT as my husband says) this up and coming surgery is “just what it is”. My mouth has not healed the way it might have – nothing to do with my health. Apparently the previous stent, added during surgery in early February 2018 just was not on for long enough I was told last week by Professor Clark. I was also told, that some more skin will need to be harvested from my fabulously (my word!) giving right leg for that to happen. OK. Sigh.

My right leg is such a good one: here’s a collage of how much it has helped….and healed! I am one lucky lady.

But I still found the news harder to absorb because of the details. I knew the surgery was necessary after the Professor and my prosthodonist talked then let me know before Easter. What I did not know was that I would be having ‘the stent, the stinky stent’ in for MUCH longer than before. I had a little weep about that on the way home because I know how that felt in my mouth for the few weeks last time.

So…what’s a blogger to do? Write about it and add a photo or three.

On Tuesday 1 May, following that visit in the afternoon, I wrote this post on Instagram and I admit it was to write it out rather than let it sit inside my head and I received the love, support and care from many. I have always been buoyed by this because I am socially and physically isolated here on the coast, and having friends on-line helps greatly!

Of course my husband is the best listener and advisor. My extended family gets concerned about me too but I like to think I am confident about how things go for me.

Today I was here at Chris O’Brien Lifehouse, Camperdown in Sydney, for my pre-4th surgery consultation with my lovely Professor. This is the view down to the ground floor from Level 2 as we were waiting. We heard the piano being played beautifully later & I got to meet the lovely art-making person & make a card. It is a most welcoming and caring place to be even though why most of us are there is not for a reason we choose.

Today I learned that I will need more surgery, the addition of a stent (mouth guard) as I had in February for only weeks …will be in my mouth for months this time. This is not a pleasant thought but without it, the gums and mouth area will not stay in place for my (future)implanted teeth. . My memories of this last time was that it is uncomfortable, gets stinky & will impede eating even more. And it hurt at times. I will need more visits to Westmead in the weeks following the surgery for the prosthodontist to take the stent off & clean around it & put it back.

Additionally I learned that my lip will need more skin. My right leg will be the source of a second skin graft from the thigh. This experience last time meant a bandage on for 2 weeks, no showering and after that time, to have a bath and over time the bandage and the healing patch will come off.

To say that I am a bit disappointed is true but…… surgeries such as mine are new, they require skills and knowledge gained each time a patient is presented. So, wondering how to manage my thoughts and feeling about this, I decided that writing it helps; as does showing appreciation for all that has been done for me so far and helped me recover from the nasty news last year that I had Squamous Cell Carcinoma in my upper gums.

The day I have my 4th surgery at Chris O’Brien Lifehouse will be Wed 16 May 2018 (day surgery)

That is one day short of the first anniversary of my cancer diagnosis on Wed 17 May 2017.

Read about that here if you are new to the blog

I was on Level 2 (where I stood today)  the very next day, 18 May 2017 to meet both the Professor and Associate Professor who would be doing my major surgery in July 2017.

That it is almost one year is both scary and amazing.

Thank you friends here and on FB for your support, kindness, messages and love.

This is what I know I will be looking like again. I guess it helps me to understand more. I am disappointed but I also trust my professional team implicitly and know what they learn each time they do this kind of complex reconstructive surgery is likely to help others.

I am dealing with this positively and with courage. I am going to wear this more, I think!

I will be spending more time batch cooking as I know I have to eat as well as I can but I also know the restrictions.

Thanks for reading thus far! I know this cancer story of mine is quite dominant at the moment which I believe is linked to The One Year Since Diagnosis coming up.

Do you remember certain days/times of year for different reasons?

I sure do.

I have always been like this.

I know there have been quite a few posts about this cancer and surgery but I am grateful to be able to blog about it and hope that you can have patience with me as I continue to get towards my goal of…..implanted teeth!

Thanks to all who read and comment. I am buoyed every time as I said in that Instagram post last week.

Denyse.

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

On Thursday this post links with Leanne here.

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