Tuesday 25th June 2019

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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One Year After My Major Cancer Surgery. 2018.59.

One Year After My Major Cancer Surgery. 2018.59.

This space, Denyse Whelan Blogs, has been a life raft to the outside world and a connection from me to you, the readers and fellow bloggers. I am aware that since my first May post “I have Cancer” there have been a significant number of posts about this cancer and me.

In reaching the 1st year anniversary of the major mouth surgery on 6 July 2017 last Friday, 6th July, I decided that whilst there will be occasional updates, there will be a general easing away from the focus as I get to look forward to a broader life view.

However, I cannot predict when that will be, as a year ago I might have been given the impression that my recovery, i.e. surgeries and healing to gum and jaw readiness for implanted teeth might be 8-9 months. I am in my 13th month now. My mouth has needed a 4th surgery and a second skin graft taken to enable the lip the be more prominent and for there to be enough space for teeth to go in. THIS is why I am on a drive every.single.week until mid August so that my excellent prosthodontist can do the best first stage of teeth for me. Implants remain much further away.

I wanted to do a snapshot of how it has been for me as I have recovered and some of the ways in which I have been able to adapt and adjust to life with no teeth on top, 8 on the bottom, and a skin graft inside my mouth, along with a bone made into a jaw.

Life went on…after hospital but I needed to adjust significantly to home life as I was restricted with movement: a boot on the leg where the surgeons had removed my fibula and skin/flesh for my mouth. I also could eat with difficulty and there were some tears via trial and error. Over time I learned how to better cater for myself after sending my husband on early day missions for soft foods like jellies and mousse. I admit I still find the eating restrictions hard but do what I can to keep up nourishment as I need protein each day and some iron-rich foods. Since late last year I started cooking mini-meals and freezing them.

I am not someone to sit around for long and once I could drive, 6 weeks after surgery, I set out for small drives to be used to both managing the car, and that I was stable on my feet when I got out. I soon re-engaged with shopping. Even though I had not enjoyed shopping before the surgery (I was anxious and I was not interested in clothes or books or even browsing) I found my shopping mojo again when I knew I needed a focus for each day. Along with the enjoyment I have always had for being near the beach or finding places to photograph, going out every day became must-do for my emotional health. I dressed well, had a photo taken and went out to chat with people I met and have a coffee and do some art.

For the first part of 2018, being holidays everywhere, I waited out the time before planned third surgery in February by distraction, activity and going to the beach as well as out for coffee. I had also had a second surgery in November 2017. It was always hoped that the February one would be my last or maybe that was just me??

The February surgery saw my mouth healing well and the prosthodontists took my stent off. This was short-lived (darn it) because my surgeon wanted it back on. Alas, the reason it was needed was the area between my upper lip and jaw was very tight and in fact left no room at all for the addition of teeth. I found out, much to my disappointment that a 4th surgery, and skin graft to make the inside of the mouth even roomier would be on in mid May.

This is where I am at now, almost 8 weeks from that time. The stent is doing the job. It has been mighty sore and uncomfortable at time but my fortnightly, now weekly visits to the prosthodontist at Westmead sees this being removed, trimmed and re-fitted. It can take over 2 hours. Nevertheless I am a very co-operative patient and I want it to work too. Over the coming month and more I will be at Westmead for longer visits and with luck on our side, the first fitting of a set of false teeth for the upper gums.

Thank you if you have read this far.

I was of two minds about posting this. I said to my husband “I am sick of my posts about cancer and recovery” and his comment was “then other people might be too.” However, I also decided that it was IMPORTANT to me to keep the update and to mark this occasion of ONE YEAR since the first surgery and that’s why this post is here. So much of my recovery has been, and still is, mental. It is about attitude, some courage and a willingness to see this through. I have been, at various times angry, impatient, teary, frustrated and downright “over it”.

However, I am MUCH better at picking myself up, dusting myself off and starting all over again…

Denyse.

 

On Tuesday this posts links with Kylie here

On Wednesday this post links with Sue and Leanne here

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