Monday 22nd July 2019

Share Your Snaps #5. #LTW25/51. My Head & Neck Cancer Photos 2017-2019. 71/2019.

Share Your Snaps #5. #LTW25/51. My Head & Neck Cancer Photos 2017-2019. 71/2019.

I am choosing to celebrate my two years + since head and neck cancer diagnosis in images that mean much to me as a patient who is using this medium to show:

Surgeries,

Healing,

Gratitude,

Waiting, 

Becoming Well.

Some images may be confronting to you. The nature of having a head and neck cancer is that it is brutal in its ways of eradicating it. Be it surgery (my sole treatments), radiation, chemotherapy or a combination of all. Please consider using my experience to get your mouth checked and to follow up any pain, lumps & bumps in the head, neck, under ear areas….And please think about a donation to my Virtual Fundraiser for BeyondFive where I am a volunteer Ambassador. Link at the end. Thank you. 

 

1. Where recovery began. Chris O’Brien Lifehouse in July 2017 and realities of being home and what my body was doing to heal.

2. My ‘mouth’ reconstructed…and lots of waiting for more surgeries and needing to adapt to changes in my mouth. Surgery in Feb 2018 too.

3. And a 4th surgery…gets me closer to upper teeth but such a long wait with a stent attached inside. Getting my #HNC awareness happening & supporting the first Soup for the Soul event telling my local MP about it.

 

4. Many trips to Westmead as my mouth needed measurements, cleaning of abutments area and so on. I had 2 more surgeries to make my mouth ‘teeth ready.’ My first meeting with Central Coast HNC patients. I had not met another HNC patient till almost a year after my first surgery. And....S M I L E.

 

5. So many reasons to smile, show appreciation & help support the works of HNC groups, meet with Beyond Five, smile at my surgeon and see the realities of inside my mouth, with my prosthodontist telling me all about how this is screwed into the cheekbone and more. Yikes. No wonder it hurts at times.

6. With my recovery continuing my confidence improved.It was great to have some special occasions including a belated retirement medal presentation, meet-ups in December & Christmas at our place & to celebrate my 69th birthday at the the end of November.

7. In early Jan 2019 a quick trip to COBLH to see my surgeon where he confirmed ‘extra skin’ was just that, not cancer…and that threw me for a bit (cancer as a possibility). It was good to think about it and consider gratitude and we celebrated an 18th Bday & our Feb meeting of CC HNC support group had a special guest.

 

8. And the memories of the 2 years before were strong but I gave myself credit for getting through tough times then and now. Meeting up with friends AND authors who are friends was fab! My mouth reality is here too. Bit graphic: Before Cancer diagnosed.

 

9. Celebrated my 2 years since diagnosis with my husband on 17 May and he said ” time for the Apple Watch you’ve wanted”. Recently I’ve helped share another HNC patient’s story for Beyond Five, met my daughter for Mother’s Day, had another CC HNC group meeting at the Cancer Council, saw my prosthodontist, my dentist too…and at the special celebration of Chris O’Brien’s legacy for Head and Neck cancer in early June at COBLH loved seeing my surgeon, Prof Jonathan Clark (who became AM from Queen’s Bday honours the next weekend!) and my HNC Nurse Practitioner Justine. I am so fortunate!!

 

10. My friend updated my image for the blog after it had been showing my way before cancer image for 4 years. Now, that feels more like me!

 

Denyse Whelan Head and Neck Cancer Patient now Ambassador.

Consider a donation of $5 or more to my Virtual Event

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser was initiated in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here.  World Head and Neck Cancer Day is on 27 July.

Have you shared your snaps today?

Denyse.

Kell also has a Monday linkup here. Join in!

You can link up something old or new, just come on in. * Please add just ONE post each week! * Feel free to go with the prompt for the week to add your ‘take’ on the prompt. Or not. * Please do stay to comment on my post as I always reply and it’s a bloggy thing to do! * Check out what others are up to by leaving a comment because we all love our comments, right! * Add a link back to this blog in your post somewhere. I don’t have a ‘button’ so a link in text is fine! *Posts deemed by me, the owner of the blog and the link-up, to be unsuitable for my audience will be deleted without notice. * THANK you for linking up today!

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Head & Neck Cancer. June Updates & WHNCDay 2019. 64/2019.

Head & Neck Cancer. June Updates & WHNCday 2019. 64/2019.

It would be remiss of me not to do an update in June….yes it would!

Having a CT ‘Surveillance’ Scan.

Following my 2 year (and every 3 month) cancer check my Professor determined it was now time for a ‘baseline CT scan’ of head, neck and chest. Ok. OK! It is a funny old thing, this cancer business until you “know” what the results are. There were no visible signs anything would be found…but…

I went. I was a bit nervous. I was finished in 20 minutes. Then I waited for a day, then another. Until I sent an email: already knowing my surgeon had a huge week but hoping he had a result. He did, I was told on the phone by his lovely practice manager: “ALL CLEAR”. Yay.

That week I also visited my dentist – the person who I convinced to remove the bridge & teeth in April 2017 where cancer was eventually found. He was able to check out all that had happened in the past 9 months and clean my remaining 8 teeth. I have an amazing team caring for me.

The First Week In June 2019.

This week marked the ten years since Professor Chris O’Brien, Head and Neck Cancer Surgeon, died from brain tumours. His legacy is so many people who trained and worked with him at R.P.A. and now at Chris O’Brien Lifehouse. His widow Gail O’Brien said recently that without Chris getting cancer he would not have understood the need for cancer patients to be cared for nor treated as well without his vision for a ‘one stop cancer care’ place. He knew that a specialist hospital -comprehensive cancer centre – would happen but he did not know of course that its obvious name would be his in the title.

On Monday 3 June I attended Lifehouse to hear the ‘stories’ of working with, knowing and loving the man called Chris O’Brien. This was a presentation about his legacy in head and neck cancer and as a patient with #hnc as its shorthand name is on twitter, I learned from those who have treated me and who paid tribute to Chris. In fact my surgeon’s final words of his talk were “there’s a little bit of Chris in everyone’s role”.

Later when I got to say hello again to Gail and to thank her for the work of Chris O’Brien, I said even at my most scared – one day after being told I had cancer – when I walked into Chris O’Brien Lifehouse I felt different. It was not a ‘hospital’ as I knew, it was full of interesting places and spaces and caring people. I felt safe and cared for. And still do. Each time I walk in, I look up at the various images of Chris and others and I am very grateful.

Being An Ambassador For Head & Neck Cancer Awareness with Beyond Five.

In June it’s time to ramp up the Head and Neck cancer awareness as we lead into the last week of July 2019 where World Head and Neck Cancer Day is marked with programs, conferences and more on 27 July 2019.

The colours for Head and Neck cancer world-wide are Maroon/Burgundy and Cream.

 

My #HNC & #B5 Lanyard with my card & Ambassador badge

Beyond Five. 

For Head and Neck cancer patients, family and friends. This is a website and offers lots to help. It continues to grow and change but with no government funding, some donations by companies in related fields and one part-time business manager, a fund-raiser began for them in 2018 called Soup for the Soul. Soup is often a food that patients with head and neck cancer can manage and it is comforting.

Soup for the Soul is already live and I have a Virtual Soup for the Soul page here. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

World Head and Neck Cancer Day: 27 July 2019.

Soup For the Soul Event at Gosford: Central Coast Cancer Centre. Tuesday 23 July 2019.

In June I will be working with the local Head and Neck Cancer Support Group at Gosford to prepare for our Soup For the Soul and Head and Neck Cancer Information and Awareness Day on Tuesday 23 July 2019 at Central Coast Cancer Centre. A year ago I went to the first occasion and met people who also had head and neck cancer and were carers and professionals too. It was the first time I had met anyone else with head and neck cancer. Now the people there have become friends of mine.

From 2018 World Head and Neck Cancer Day & Soup For the Soul at Gosford:

 

This post is to also support others around the world who will be part of the World Head and Neck Cancer Day in 2019.

Do support the charities which help with research and awareness of Head and Neck cancer.

In my case, the link in the story about my virtual Soup for the Soul event will take you directly to donate to Beyond Five’s continuing awareness updates and programs to help those affected by Head and Neck cancers.

Thanks for following my Head and Neck cancer stories. This is the link to where all of my Head and Neck cancer posts are as well as those that have been published elsewhere.

Warmest wishes

Denyse.

 

 

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

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

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

Musing One.

What has happened this month?

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

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

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

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

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

On my 69th Birthday 2018

Musing Two.

How has the lead-up to the anniversary been?

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

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

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

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

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

December ’18

Musing Three.

What actually eventuated.

Visit to the Prosthodontist.

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

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

 

Visit to the Head and Neck Surgical Team.

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

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

Thanks Cate for all your reassurance and hugs too!

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

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

Musing Four.

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

Westmead.

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

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

Camperdown.

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

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

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

Musing Five.

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

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

 

Musing Six.

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

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

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

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

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

Denyse.

 

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Changing Me. 19/2019.

Changing Me. 19/2019

Changing me is I now realise ON-GOING!

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

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

  • kindness
  • self-care
  • words of encouragement

and seeing that thoughts are not always true.

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

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

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

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

 

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

One Year On.

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

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

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

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

*chewing

*crunching

*biting

*savouring

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

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

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

*like wearing my new clothes

*feel comfortable in my body

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

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

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

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

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

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

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

So have you ever taken steps to change you?

Denyse.

Joining with Min for Zen Tips Tuesday here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

Have you ever had major surgery?

How was your recovery?

What were you grateful for?

Denyse.

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

 

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

 

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

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

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

Day Before Surgery

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

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

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

Wednesday 5 July. Pre-Admission Day.

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

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

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

Thursday 6 July. Day of Surgery.

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

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

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

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

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

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

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

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

Denyse.

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

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

Mon 31 July: 29/52. Winter.

Mon 7 Aug: 30/52. Birth Order.

Mon 14 Aug: 31/52. Ideal Meal.

Mon 21 Aug: 32/52. Selfie Time.

Mon 28 Aug 33/52. Mindfulness.

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

Mon 11 Sept 35/52. Beach or Bush.

Mon 18 Sept 36/52. Taking Stock.

 

 

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What’s in a word? Cancer. 2017.82.

What’s in a word? Cancer. 2017.82.

Since I heard the word, cancer, to describe what had been found via pathology from the biopsied tissue from my gums, I have seen it and heard it everywhere. However, I think, it’s like when I  first become pregnant, I saw other pregnant women everywhere.

It’s more noticeable because it affects ME. So, whilst there is still no word (ha!) on the exact  date for my cancer surgery, I thought it timely to write a post.

I have been incredibly well-supported already by those in my friendship realm here in the blogging world and elsewhere.

Each has been from someone who has had cancer, knows someone with cancer, and is currently being treated for cancer.

I read recently  that 1 in 2 of us will have cancer. Wow!

My family of course have expressed their concern and care for me. I have been visited by almost all of the immediate family and that has been lovely. What I have found too is the outstretching of hands (figuratively) of so many is helpful and reassuring which is why I blog about it.

Here’s what I wanted to share briefly:

I had been on a roller-coaster of emotions ANYWAY before I was diagnosed with cancer, so to add cancer to the mix has raised those anxious thoughts of mine to greater levels. But, I am thankful that I was already doing much to help myself with anxiety and adjusting to our new way of life. Meditation, being more mindful, walking, being outdoors, blogging, enjoying some Netflix with my husband, going to the beach, taking photos, supportive health professionals  and generally engaging on social media are already integrated into my life. So, they have become tools for managing my thoughts about cancer too. 

Thank you to the many people who have sent me messages, cards and let me know that I am in their prayers, thoughts and hearts.

“We are all just walking each other home” Ram Dass.

It is very humbling to have such a lovely group of you with me.

Most of all, I thank my husband who is already my finest supporter and rock! He will be with me as much as he can within the first days in hospital and I know, not matter what state of grogginess I may be in, he will be within arms reach for me. That IS love. I am so lucky.

Thank you everyone. I hope that if the word ‘cancer’ is part of your world by association or for you that you too will be cared for and about like I have been. I am blessed. This image is one I am using when I need to take myself to a more enjoyable mindful place. Enjoy!

I am grateful every day.

UPDATED: About my present state of health. 

When I wrote this post I thought I was managing myself quite well. Since then, I have had some pretty horrid days (and nights) where I have become fearful, panicked, and so vulnerable I wanted to go into a corner and hide and never come out.

I am shit-scared right now.

I am worried about losing what I valued: my mouth where I speak, eat, share my emotions and smile. It has been days of crying uncontrollably, being held until I calm down (thank you dear B) and taking some valium (which I don’t really want to) and letting out the fears  in words between the sobs. 

I fear: the loss of ability to use my mouth for at least 7-10 days, have a naso-gastric feeding tube down my throat for those days, having the skin/flesh/bone from my right leg inside my mouth after 3/4 of my upper jaw/palate as been removed. Dealing with the not being in control.

I am, as I write, unable to really express what it means to be facing this loss of control of my body. I will be in ICU to start and may even have a tracheostomy to start if the mouth is too swollen. This is very scary to me, and I am admitting it now.

For me to admit how vulnerable I feel right now is to say “I cannot do this without help”. My husband reassures me he will be there as much as possible, and given how I will look and be, he will be my only visitor until I give any indication I can see others. I am facing the unknown and that as we know is the scariest place to be. I will be losing my smile….for more than a while. Possible 3-4 months until my upper jaw recovers.

Have you faced major surgery of any kind for cancer and other reasons?

How did you deal with it?

I am so wanting some answers that help me know – in the pre-surgery phase that I am not alone in my fears. 

Thank you for reading this far! I appreciate that very much.

Denyse.

Joining Kylie Purtell here for I Blog On Tuesdays link up.

Linking here on Thursday with Leanne and friends for Lovin’ Life.

 

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