Saturday 26th September 2020

Women Of Courage Series. #53. Yvonne McClaren. 71/2020.

Women Of Courage Series. #53. Yvonne McClaren. 71/2020. 

A series of blog posts on Denyse Whelan Blogs to be found here from mid-May 2019: Wednesdays: each week until the series concludes in 2020.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda.

Whilst I have not ‘met’ today’s Woman of Courage in real life, as they say, we have most certainly connected by the common (and not ever-welcomed) diagnosis of Head and Neck Cancer. Yvonne, who is 54, has shared her story below via the responses to the questions but to know even more about her and how she is facing life full-on these days, check out her links! Recently she appeared  too as part of the Beyond Five live video segment relating to food preparation and eating for those affected by head and neck cancer, particularly as in Yvonne’s case and others, relating to swallowing.

Dysphagia is the medical term for difficulty in swallowing. This includes problems with sucking, swallowing, drinking, chewing, eating, dribbling saliva, closing lips, or when food or drink goes down the wrong way.

The link to the video is at the end of this post.

Thank you Yvonne for sharing.

 

 What have you faced in your life where you have had to be courageous?

There are a few times in my life where I have had to reinvent myself both professionally and personally. I think my latest challenge with finding a large tumour on my left tonsil has been my greatest challenge.

There have been other life-threatening situations – involving motorbikes, but this was really out of my control. Once diagnosed I responded with ‘silence’ – I went into myself I realise now.

It was a difficult time as I had relocated countries, left my full time job to start a new life and career and had my heart broken all in the space of 8 weeks, then a cancer diagnosis.

Suffice to say, I had little time to grieve anything, it was get on with it and start the treatment. Everything was put on hold in terms of dealing with loss of income, loss of love and in some respects the loss of my beloved father a year earlier.

It’s only now, 18 months after diagnosis, that I am starting to mentally deal with some of the other issues going on in my life at that time.

 

How did this change you in any way? Please outline further if this has been the case.

I had no time to consider anyone or anything else really.

I was on my own and thankfully had my mum still in her own home where I could live whilst going through the treatment.

I had had a sore throat for many, many months and jokingly said to a friend “I think it’s cancer” not really believing it, turns out 6 months later I was right.

How has it changed me?

I listen to my body really closely now, I use to before, but this has made me very aware of what thoughts I have running through my head, what niggle is going on and why… it also made me realise that every second you spend worrying about some insignificant thing is wasted time.

Get on and do it and do it now. Whatever it takes.

I lost the last five kilos I couldn’t budge and then some, so that was great for me, not an ideal weight loss programme but it started me back on my fitness journey 15 kilos lighter.

I now have to learn how to eat again and for a foodie I have found this the most distressing, depressing and difficult side effect.

Food was/ is my world and I have had to retrain and rethink what that looks like now. It also made my fledgling idea about teaching culinary pursuits in a foreign country come to fruition.

 

Is there something you learned from this that you could recommend to help others who need courage?

 

You always have choices, for me, I sat with it and the implications and thought about the worst-case scenario.

I was also told by a well meaning nurse that my cancer treatment had not worked and there was nothing more they could do for me. That sort of puts things in a very stark perspective, it’s humbling and it’s frightening.

It’s also incredibly motivating when I discovered that was not the case.

Learning to manage emotions is something you also can practise and become the master.

I then figured well if that’s as bad as it gets (death / inability to function normally/ disability) then make the most of what you have now.

I also discovered that you lose “friends” along the way, whether they can’t handle the new you, or who you have become or are becoming is too hard for them I don’t know.

I have had to make an entirely new circle of friends and have reacquainted myself with ones I have not had much to do with for years.

What I can say is, you are innately very strong you just don’t know it yet.

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

Yes, I am doing things now that are very much out of my comfort zone, although some would say riding through Vietnam and Laos on the back of a motorbike during a typhoon is getting out of my comfort zone too, but this disease and its side affects have made me realise that everyone has a message and a story.

In many ways this disease has focused my life’s purpose, I had all the scaffolding ready but now I have the ‘reason’ to hoist the flag on top of the scaffolding.

 

Is there any message you would give to others facing a situation where courage could be needed?

Don’t spend time worrying about things that might happen, focus on the now and take it one step at a time.

There is literally  someone else worse off than you, I’d hate to be that person by the way whoever they are, I guess it’s all relative.

 

Do add anything else that you think would help others who read your post. 

 

My job as I see it now is to spend my time doing what I love, what I love is cooking and if I can help others with eating difficulties as a result of HNC and its treatment then that’s what I am going to do.

I come from a family of teachers so it is not surprising to me that ultimately, I want to use my skills to help others.

I have set up The Food Manifesto and Soup hug as a way to bring a community together that suffer from this debilitating side effect.

I like to think of myself as the food curator for dysphagia, the link between your dietitian and your kitchen.

 

What a story of resurgence here. I can say that because I did not know Yvonne until she found the friendly facebook group for Head and Neck Cancer Patients, Carers, Professionals and Families. It is here, too, where I ‘met’ another Woman of Courage Maureen whose story is here.   There is another Woman of Courage called Tara Flannery who shared about her head and neck cancer here.

And this Woman of Courage shared her story. She is Julie McCrossin AM, who is also a Community Ambassador for Beyond Five and is part of the webinar Yvonne appeared in below.

 

Thank you again Yvonne. I am so pleased you are doing all you can to be well and help others too.

This is the penultimate post in the Women of Courage series.

Denyse.

Beyond Five, where I am a Community Ambassador released this video live just before World Head and Neck Cancer Day 2020.

Please take some time to view…and see what Yvonne shares from her kitchen and share with others who may benefit.

Thank you.

Social Media Links for Yvonne:

Blog/Website:  www.thefoodmanifesto.com

Twitter: https://twitter.com/McclarenYvonne

Facebook Page: https://www.facebook.com/sustainablefoodandtravel/

Instagram: https://www.instagram.com/the_food_manifesto/?hl=en

 

On Thursdays I link here for Lovin Life with Leanne and friends.

Copyright © 2020 denysewhelan.com.au – All rights reserved.

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Women of Courage Series. #26. Maureen Jansen.10/2020.

Women Of Courage Series. #26. Maureen Jansen. 10/2020.

A series of blog posts on Denyse Whelan Blogs to be found here from mid-May 2019: Wednesdays: each week until the series concludes in 2020.

Here is the introduction to the series.

Courage is strength in the face of pain or grief. It’s doing something that frightens you. We face situations that demand courage every day. These situations provide us with choices, and the way we respond to those choices determines our future. Dayne Shuda.

I am so pleased to introduce Maureen Jansen who is 73. We have ‘only’  met via social media thanks to us living on opposite sides of the Tasman Sea. Maureen is a New Zealander. We ‘met’ in mid 2018 via our common connection: Head and Neck Cancer. I suspect, even without this between us, the teaching and ‘grandmothering’ along with outdoor photography would also connect us!  Maureen tells her story. It is one of amazing resilience and testament to her strength of character and will. The best bit…is that in June 2020 we have plans to meet! More on that another time. 

Thanks Maureen for sharing your story today as a Woman of Courage: 2020.

 

What have you faced in your life where you have had to be courageous?

I’ve had to dig deep four times after receiving cancer diagnoses. My first diagnosis of advanced ovarian cancer was in 1996 and I decided to be brave to protect my children who were then 13, 17 and 19. The youngest was living at home and I was more scared of traumatizing him than of anything else. I’ll always remember a fellow patient in my ward saying that the first thing she said when the doctor told her she had cancer was “My kids”, as tears poured down her cheeks.  I now think that my reaction was too stoic and not open enough with my youngest son. And by the way, that advanced cancer diagnosis proved to be of a type of ovarian cancer which usually responds well to treatment. I was well and truly cured but the repression of emotions initially, followed by a complete turnaround in prognosis later, led to a very mixed up and depressed me when I returned to work after it was all over. The vagaries of the human heart!

 

How did this change you in any way? Please outline further if this has been the case.

The ovarian cancer diagnosis and later the head and neck cancer diagnoses changed me a lot. I had counselling and anti-depressants which both helped me deal a little bit better with my former anxieties, funnily enough. I have had to make a conscious decision to get over fear of needles and other painful procedures because I know that they will be part of my life now although I am currently very well. I’m not as scared of physical pain as I was, and even had two fillings the other day without an anaesthetic. I’ve learnt to chant a little rhyme in my head when needles and drills do their thing. It’s usually only for a short time. My proudest moment was when I had some clips out in a wrist wound five years ago. The nurse was struggling and each time she used the clip removing device, there was a surge of pain. I did my deep breathing and we talked and laughed as we went through each one. It was a strangely uplifting moment.

 

Is there something you learned from this that you could recommend to help others who need courage?

I really think that learning some specific coping strategies from a psychologist is invaluable. I have found many mindfulness tools excellent. Mindfulness, walking, taking photographs of nature and posting them online … These things have helped me as well as trying to live a productive life with plenty of service to others. I’m not good at self care but we should all do it!

 

Do you think you are able to be more courageous now if the life situation calls for it? Why is that?

In terms of my health I think I will be braver but other situations like dealing with conflict and communicating with others are situations I find take the most courage, honesty and wisdom. I’m still learning.

 

Is there any message you would give to others facing a situation where courage could be needed?

It can well up in you when you least expect it. Often things are not as bad when you are IN them as they look to an outsider. When your back is against the wall, some sort of survival instinct seems to kick in. If it doesn’t and you feel frightened, you have every right to be. Psychological help makes a huge difference when fear and anxiety become too much to bear. Seek help!

 

Thank you so much Maureen. For sharing and for being here to tell the story. What a story! I have so much admiration for you. Looking forward to catching up “in real life” as they say. Meanwhile, I am adding below something about the facebook group.

Denyse.

Social Media: follow Maureen here.

Blog/Website: hncmaureen.com

Twitter: @HNCMaureen

Instagram: @birdlikeme

 

 

IF a family member or someone you know does have a diagnosis of a head and neck cancer or that person is a carer, the value of a good facebook group cannot be over-done. The friendly space that IS this group for eligible people to request membership is a good one. There are people from all over the world but the group is not huge so personal connections can be made. It is mainly made up of New Zealanders, and Aussies too…along with those from the U.S. There are questions to be answered to join and it IS strictly for those with a head and neck cancer. Link is here.

Joining each Wednesday with Sue and Leanne here for Mid Life Share the Love Linky.

On Thursdays I link here for Lovin Life with Leanne and friends.

Copyright © 2020 denysewhelan.com.au – All rights reserved.

 

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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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