Wednesday 17th October 2018

My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

My Head & Neck Cancer 1st Anniversary. Pt 2. 2018.46.

I recently wrote Part One of the Anniversary of my cancer diagnosis here.

The second part is actually a bit harder to write.

I am grateful of course for my cancer being taken via surgery but I seriously had no idea that to recover and be implant-ready would be up to and well over a 12 month period. This is because, as I understand it, bodies heal in different ways and react like that too. I also know that this mouth reconstruction of mine necessitates a lot of work by the multi-disciplinary team of medical, allied health and dental experts.

I am ever-grateful for this team.

With Prof Clark & Cate Froggat, Clinical Nurse Consultant & Surgical Assistant

I know that my Professor Jonathan Clark  leads the Head & Neck team and he is also working with the training of other doctors just as he learned as a resident with the late Professor Chris O’Brien at Royal Prince Alfred (RPA) Hospital. From the Westmead Oral Sciences comes  my Prosthodonist, Dr Suhas Deshpande and his colleagues including Dr David LeinkramDr Matthew McLachlan. Dr Deshpande’s Nurse, Ofelia has seen me through some emotional times and is a very kind person. Norma at the reception desk at Westmead Oral Sciences always has a smile for me and a welcome that’s bright.

Associate Professor Ardalan Ebrahimi was the first person I saw on May 18 2017 and who examined me and put together, along with Professor Clark what would be my BIG surgery in July 2017. A/Prof Ebrahimi was kind enough to respond to my 2 detailed emails pre-surgery and saw me post-surgery in 2017 along with  Justine Oates Head and Neck  Nurse Practitioner who re-dressed my wounds and ensured continuity of care once we were back home on the Central Coast.

In my 10 days post Surgery #1, I was cared for by a number of professional nursing staff firstly in ICU with Dr Tim  then on Level 9 North of Chris O’Brien Lifehouse where Jason was the NUM. I will single out registered nurse Roan as he cared for me most early mornings and made sure I got out of bed to get some sunrise shots!

From the Head and Neck team who were part of my first surgery was a team of doctors including Dr Laura Wang & Dr Rahaul Jayaram who saw me most days in hospital.  Allied professional staff  at Chris O’Brien Lifehouse were physiotherapist Leah ensured I could walk post July surgery after fitting my right leg with the boot, dietitian Jacqueline gave me lots of guidance for eating post mouth surgery and the speech therapist Emma made me drink a cup of water (ahh!) and speak ( not a hard task given my propensity to talking!) to ensure I was going well before leaving Chris O’Brien Lifehouse last July.

I thank the wonderful anaesthetists and anaesthetic nurses who ensured not only that I went to sleep  but that I woke up with no dramas. One was Dr Murray Stoken and another is Dr Paul Goonan. On 16 May I was cared for by Dr Stephanie McInnes. 

Of course I have the excellent and fabulous Cate Froggat, my Clinical Nurse Consultant & Surgical Assistant who is the gentle and smiling person looking out for me in the operating theatre and in post-op consultations.

How could I not mention Julie and Priscilla…a hug and smile each time I see them, those who keep all of us seeing Professor Clark organised with compassion and care.

Once I was home, as I have outlined before, I was also in the care of the Central Coast Public Health Community Nursing Team for around 2 months and Eileen was amazing with her knowledge and advice.

My dentist Dr Alistair Brown saw me for a mouth check last October and to clean the remaining ((and oh so important to me) 8 bottom teeth. He was the person who initially referred me to Dr Stef Calladine, oral surgeon,  who did the biopsy last May and broke the news to me over the phone that I had squamous cell carcinoma. I will always be grateful for her caring manner and more importantly for referring me to a place I had heard of called Chris O’Brien Lifehouse and to a specialist I had not, Prof Clark.

My GP. Dr Owen Greene. What a caring and understanding man he is. I saw him sometimes up to 4 times in a week when I was recovering from BIG surgery #1. He reassured, he checked on me and he continues to do so, letting me know you are doing really well. His office staff and pathology people ask how I am going tooIf I pop into the chemist next door, Tim the pharmacist is always asking how I am going too.

There are those that I cannot mention all by name but have been integral to my diagnosis, surgeries and recovery times:

  • staff at the various Imaging places in Sydney and on the Central Coast
  • staff at the Admissions Desk and Pre-Surgery Desk at Chris O’Brien Lifehouse
  • the nursing staff pre- and post-op in the recovery areas
  • my psychologist from the READ clinic in Erina saw me a couple of times and was most kind in her assertion that I was doing well without any more need for her services.
  • the social media account for Chris O’Brien Lifehouse @chris_obrien_lifehouse & the art programs at COBLH @arterieatlifehouse (Instagram)
  • those lovely people who welcome me to their coffee shops like Randa at Fibonacci Wyong  and ask after me, along with my fabulous hairdresser Tiffany, our great podiatrist Sean who came to the house to treat me when it was easier for me, and our Property Manager, Naomi, who was delighted to see me recently. Kyla who makes the most delicious cupcakes always asks how I am going when we catch up. In fact, I won a generous voucher recently and as cupcakes are something I CAN eat, this is just the best!
  • the Beyond Five Organisation: Nadia for her reaching out for me to help with publication of my story written by Kirsty. Check my photos here to see the fundraising ribbons. World Head and Neck Cancer Day in July 27. I wear my ribbon and blog about Head and Neck cancer because not many people know about this cancer. I do now!

Then definitely NOT last nor least are my friends and family. Those who connect on-line too. My blogging friends, my instagram friends and those from Facebook and Twitter. I love connecting!  To know of so much love, concern and care being out there for me after the diagnosis and through recovery in the year it’s been is marvellous. Thank you for reading my posts, checking out my Instagram pics and ‘liking’ the blog Facebook page.

Each day in 2018 I made a commitment to myself to do at least these three each day:

  • get dressed in an #outfitoftheday and go out – for a coffee, a browse, a shop or just to look at a view
  • go into nature or observe nature and then capture this in a photo
  • make something creative, be it a mandala or a pattern or just so art fun.

I cannot single any one person out from family and friends….other than this person:

My husband. There for everything for me. Always. Love IS what keeps us together…and has done for over 47 years.

Sending everyone my love and gratitude.

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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Comments

  1. So many amazing people in your corner- wonderful. And love is the biggest healer of all xx

    • I am so fortunate! When I was given the diagnosis one day, then sent to Sydney the next I knew later how lucky I was to be referred to this professional team. Now the year on, even moreso! They care for their patients and it is true that love heals! Denyse x

  2. What a beautiful picture of your hubby and you!! I love the little goals you ahve set for yourself everyday. Changes the way the mind interacts for the rest of the day

  3. What a wonderful post – this made me feel so warm and fuzzy! This just shows that behind every patient there is a veritable army of people who help us battle this disease – you know what they say, there is no I in team! I’m so pleased you have such great people on your side, both medically and personally, but I’m not surprised because you attract the positivity that you give out!

    • Thank you Sammie, I am glad you enjoyed it too. I had fun writing it.

      So true about the veritable army/cheer squad. Some of the people did not realise the importance of their role in my well-being and when I asked for a photo for a future blog post they agreed.

      I am so lucky to have the social side of things coming good for me and we are in a new neighbourhood now we moved house. The couple across the road as of similar age to us, and next week the lady (also Denise!) and I are going out for coffee.

      This will be the ‘last post’ for sometime. Life has so much more for me to reflect on and write about now and being the first anniversary seemed like the best time to pay tribute and now to gently ease away from cancer…as much as one can!!

      Have fun in the Mother Country.
      Denyse x

  4. This is the living embodiment of people coming together. I’ve always admired that about the medical profession and the people who require their extensive services, their family and friends. I mean, that’s a VILLAGE, right there. Glad to hear you’re well. Thank you for sharing your team with us.

    • That is true, oh so true.

      I also think, unfortunately for some people, that unless you do share and allow people to help you it is not as good. I know that many people are embarrassed or very private in terms of their health/illness but if they could allow others “in” they would know they are not alone.

      One good thing I guess about being a bit of a talker (ha!) and sharer (yep) and having a blog is that it provided a space for me to let others know how things are going.

      Yes, from the lady who makes me the coffee she knows I love, to the Professor who does not mind me sending him photos of my mouth when I am “worried” I need them all!!

      That said, this is going to be my last post about cancer for some time. I am feeling the other things I enjoy in life are returning as is my interest in exploring more of what I want to blog about. This is a good thing!

      Thanks again Melissa, so good catching up again!

      Denyse x

  5. I think that many people don’t realise what recovery looks like and it’s different for everyone, as you say. I am so glad to be able to read about your recovery, though I know it must be an arduous process- but you are getting there!

    • Thanks Amy! Silly as it sounds, getting this cancer* was the making of me…from the anxiety-ridden person of the previous 4 years that I barely recognised and wanted to leave me! My treating team nurse tells me she hears that this happens for a lot of people.

      The thing about me is I am better for sharing, and I am helped tenfold by everyone who comments, connects or asks how I am going.

      We truly need to be a connecting community and cancer has taught me that again in my latter years.

      When I say THIS cancer*, it is not to downplay anyone else’s experiences with cancer as it is a truly horrible disease but for me, I am fortunate in knowing as certain as doctors can be (and they never say 100%)that my cancer was taken at the time of surgery.

      Denyse x

  6. This is a wonderful positive post. Good to hear you are healing Week. You’ve had an amazing team of professionals, friends and family in your corner.

    • Every single person here, named or unnamed helps me with a supportive word, access via email or phone or just a hug.

      I am very fortunate. Thank you so much for your kind words.

      Denyse x

  7. We take so much for granted don’t we Denyse. I thought that when you showed the photo of your first sip of water. Such an epic journey over the last 12 months for you Denyse but you certainly have showed us what inner strength can do. Great to have you share your story with us at Midlife Share the Love Party and see you next week! #MLSTL

    • Oh yes we do!! That first sip of water was great in that my ‘speechie’ knew I was keen to have it photographed and videoed, so I actually have me saying “wow” as I sipped.

      So.Much.Taken.For.Granted. Not anymore. However, when little things go awry in the long, long recovery time I have been known to be a little fearful about ‘what it might mean’ but I have the best support (husband first of course) and back-up (professionals) and I do get reassurance.

      Only yesterday I was like it when something unexpected happened – water came out of my nose when I was rinsing my mouth and then after a while I realised that can happen to anyone who might laugh as they swallow and it is not meaning anything is wrong.

      I guess it still makes me a bit hyper vigilant as after all this time I do not want nor need more ‘bad news’.

      Thanks for your support and care always.

      Denyse x

  8. Denyse, another fantastically positive and gracious post about your cancer journey. You continue to choose to be upbeat despite the odds and your husband has proved his worth time and time again by being there for you and also taking all those amazing photos (your poor leg!)

    Thanks for linking up with us at #MLSTL and I’ve shared this on my SM xx
    Leanne | http://www.crestingthehill.com.au

  9. Thanks Leanne, I sometimes look at my leg and say “poor leg” and then I remember to thank it because it has been so good to me!!

    Not impressed though that the second skin graft was taken from the same place on my thigh as I am sure it is why it was troublesome in terms of more weeping than it should have done. Never mind, let’s hope there is no more need for my leg to give of itself!!

    I am delighted in some ways to be done with the cancer story for the foreseeable future (guest posts excepted) as I want to blog about more as time goes on.

    The first anniversary was always going to be a way to mark the occasion with blogposts like these and now I have done the appreciation and thanks I will be pleased to think about other topics.

    Thanks for your kind words and support as always!

    Denyse x

  10. You have such a great attitude and that is part of the battle. None of what you are going through is easy but you are blessed with a great support system good for you.

    • Thank you so much Victoria. I have learned a lot about my capacity to manage situations I would have been afraid of before. I take that as a good thing out of all this!

      I have a great support system for sure!

      Denyse x

  11. Wonderful, WONDERFUL post! Your positive attitude comes through and I’m so glad you’ve had (and will have) the support of an amazing medical team and more. Keep it up!!!!

    • Thank you Donna. I sure do think I have the best people around me. I have also learned a lot about myself during this time and that is something I can take as a positive too.

      Denyse x

  12. You’re so fortunate to have the support you have – I daresay that (& your incredible attitude) is what has got you through. What these medical teams can do – and they are a team – these days is nothing short of amazing.

    • I think the fact I was directed to this great team is one fact about this cancer that I am forever grateful.

      Thank you for your kind words too. There are times of struggle but they are far outweighed by the better days for sure!

      Denyse x

  13. What a fabulous team you have, Denyse. That your team of supporters is so extensive and so varied has a lot to do with you. People want to be around you, Denyse. You obviously exude positivity and strength. You are inspiring. #MLSTL

    • Oh thank you Karen, I am so humbled by your kind words. I can’t be anyone I am not. Each of the significant people in my post have seen me in tears too especially in those early days. In fact I was chatting with my prosthodontist’s nurse today and we recalled how much I needed her support one year ago. Receiving the news of cancer was a shock to my system but over time I learned to rally and gain strength each time I dealt with something challenging.

      Thank you again,

      Denyse x

  14. I got shivers up my legs looking at the skin graft (literally my nerves spasmed!) and I got tear to my eyes in your words about your husband. You are a very lucky lady indeed, tho it may not feel like it in the thick of the battle with the disease.
    You have come so far in this journey, hard though it has been. Hang on to that.

    • I am sorry about those pics. It was something I literally could not look at too. But thank goodness for my husband who, despite his initial reluctance, understood and helped me with documenting what happened.

      I need to remember how far I have come when I have some down moments and the blog and the photos remind me.

      Thanks for your loving and kind words. You always lift me up Lydia.
      Denyse x

  15. What a beautiful tribute to all the people who’ve been part of your treatment, Denyse,

    SSG xxx

  16. Leanne Hancock says:

    Absolutely beautiful story Denyse brought a tear to my eye, what you have been through and you are always smiling and positive when you come in the surgery! You are an inspiration and definitely one of my favourite patients. xxx

    Leanne
    Family Care GP

    • Oh Leanne, I am so so touched…thank you. Your words are just beautiful as you are. Thank you for reading my story and being a part of it too. Denyse x

  17. We are so lucky to live in Australia & close to such amazing medical care. COBLH sounds a lot like my Peter Mac/RMH. The level of professionalism, positivity and care never fails to blow me away. Right down to the people who work in the cafes there! Which is exactly what we need when dealing with situations so stressful. I’m amazed that your surgery involved bone – I’d imagined skin grafts but hadn’t realised the extent of what they can do – truly incredible.

    • Hi Michelle, guess what your Peter Mac and my COBLH were formed from the same grant and initiative after Kevin Rudd (as PM) had listened to the stories told by the late Prof Chris O’Brien and then, over time, continued with his widow, Gail. So we are indeed fortunate that it was via Chris’s life work..in head and neck cancer…and then his own cancer in the brain…that he came up with the notion that no cancer patient should have to be negotiating various and different places for treatment. There needed to be ‘one stop shops’ so to speak and ours are that indeed. From the minute I walk into Lifehouse, now that I am more accustomed to it all, I feel that ambience of care and attention to the patients’ needs, along with families and carers. I though I was telling my eye doctor an original story of how my fibula is my jaw (cut into pieces to fit) and she told me, that parts of the fibula have been used to help with blindness by placing I guess a camera in a piece, behind the eye!! The reason the fibula is used, as I understand it, is because we can actually do without it. It is more of a stabilising and pivoting help. I do notice if I try to turn around quickly I may need to hold onto something. Apart from that, all good. And all good to know you are H O M E! Denyse x

  18. I love all of the personal mentions Denyse. You’ve reminded me of my dad’s time(s) in hospital for his heart issues and we knew all of the doctors and surgeons and nurses and social workers names and mum used to buy them stuff and send them cards for years after.

    I’ve not really had the same connections with the health system but think they’re really important.

    Indeed, I was at a staff forum the other day and know that our whole health service (in my region) is implementing a new initiative which starts by the staff member introducing themselves. It’s so common nowadays for a doctor / specialist or whoever to just rock-up for a one-off visit and not think to introduce themselves!

    • Thank you Deb. I have given all of my team thank you cards, and little cakes I made. I still don’t know how to thank them any more (because they don’t want to keep eating cakes!!) but I think my positivity and appreciation whenever I am seeing them helps them know they are doing a good job.

      I have moved on from the fearful me of last year and it is good to be interacting with people such a my prosthodontist nurse in a positive and caring way now. Last year when I first met her I was a crying mess for half the time and she would lead me gently out to the loo. Now, we hug and joke!

      That is so interesting about the ‘hierarchical’ thing with some medicos isnt it? I used to say to those in the visiting group when I was in hospital….”have we met already?’ Because I may have but with the anasthetic I might have forgotten, and then they would tell me, yes, I’m ….or no, I’m… But I also saw the pressure they were under, like the nurses who never stopped, to get the forms completed and all that is required now for paperwork.

      I read recently that some hospitals are getting surgical staff to write their name and role on the headbands of their theatre scrubs and I thought what a good idea because unless they say WHO and WHAT they are, lying in the bay before theatre yo do not have clue. Also, you may have met them in civvies, but in work clothes they look different!

      We need to remain patient/person centred!!

      Denyse x

  19. Such a beautiful post Denyse – showcasing all the wonderful, supportive, compassionate people helping you along the way. There are so many kind and wonderful people in this world, and you are indeed one of them! I hope the surgeries are over soon for you and you can kick back enjoy a gorgeous new smile! xo #TeamLovinLife

    • Thank you so much Min. That is very kind of you to say.

      I did not always tell people once I knew I had cancer what a difference they made in my life but as time went on I realised that those who make me a coffee (and remember my order) along with my hairdresser and so on, were also contributing to my well-being and outlook.

      Obviously so did/does my connection on social media including the blog. Every person who writes something or connects in some way contributes too.

      We need each other!

      Denyse x

  20. Gosh, what a wonderful tribute to all of the people who have been on this journey with you.
    It’s so refreshing to see the thankfulness and positivity instead of the opposite!
    When my best friend was passing away, it really made both my husband and I realize that life is short. I know everyone says that, but it doesn’t always hit home until you deal with it. So now we make sure to enjoy every day—even the tough days!
    XOXO
    Jodie
    http://www.jtouchofstyle.com

    • Thank you so much for your kind words and insight. Yes, it does take something like a jolt outlining our inevitable demise to ‘wake up’ and live with what we have now. Cancer sure has taught me a lot!!

      So glad you are relishing life as it is..no matter what.

      Denyse x

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