Tuesday 5th July 2022

My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

My ‘Head & Neck Cancer’ Spring Story. 39/51 #LifeThisWeek. 99/2019.

Spring is here.

In Australia and the rest of the Southern Hemisphere. I am glad to have cool-ish evenings and lovely days but, I know from experience, the lengthening of days will bring more heat and then I will be complaining a bit as I can when the heat is on!

True to my word of needing AND wanting to get out and about I ventured to the local beach nearest to us on Friday only to find it closed off due to sand erosion (climate change, anyone??) so I took another way, up the hill then  down to arrive at the sand and gentle waves. Cold water but worth it for the paddle.

Head and Neck Cancer Check.

When head and neck cancer arrives in your life, you are taken into new and different worlds. Fortunately my ventures have been to improve my life’s quality, living with a rare cancer, and meeting many professionals who have contributed to my well-being since my diagnosis on 17 May 2017.

On Tuesday 17 September, a very rainy day, I drove to Westmead Oral Sciences for my 38th treatment with my prosthodontist and he could not have been more pleased with how well I am maintaining the skin (grafted) around the abutments (added implants to my ‘jaw from my leg’) and we both cheered when I told him I am for the most part pain free in the area that had been bothering me for months. Yay.

On Tuesday 24 September, this time on a sunny day, I arrived at Chris O’Brien Lifehouse carrying cards of appreciation and little cupcake packs for my professional team. These people have cared for and about me for over 2 years now and my relationship is close and warm as they are when they note my progress. I enjoyed a catch-up with Nadia from Beyond Five with a coffee as well, and then to Clinic on 2nd level for my cancer check. First seen by Cate, and then Jonathan and the consensus was I am doing so well, no return till early March 2020. As I finished up, I asked Jonathan how I was going in recovery and his words made me smile:  “Denyse, you are our poster girl in recovery”. I left feeling very well indeed. And the cupcakes and cards were appreciated.

There’s More To Life Than Cancer.

I could not be more appreciative of how well my cancer recovery is going and as a result, I am expanding my world and re-connecting where I could not before as recovery, treatments, resting, driving to and from Sydney took their toll.

On Tuesday, after being to my head and neck check up, I drove out to North Kellyville P.S. to see the granddaughter’s school’s inaugural Art Exhibition. What a joy it was to be there and I couldn’t resist this photo. It actually summed up just how well I felt that day!

Gratitude – for my connections found through having head and neck cancer.

And then this happened.

Those of you who have been reading my head and neck cancer posts (see here for access) will know I have NEVER found another person with cancer “like mine”. My professor had told me I was “rare of rare” in terms of risk factors and so I kind of learned to understand that was it. Until I was contacted, firstly by a mother, then by her son. This man is another head and neck cancer patient. They had found my story on the Beyond Five site after his diagnosis in 2018. It turned out, once I was contacted, he was not only living in Sydney but we shared the same professional surgical team, the same comprehensive cancer hospital and he also attended Westmead Oral Sciences.

This person, who is quite happy to be found on instagram here, has a more complex and serious version of head and neck cancer than mine. He and I connected via social media and then personally when we got together for a coffee at a place a bit up the coast for him, and down the coast for me.

Our talking and sharing was so good. I know for me, re-telling some of my story was good but I think, for him listening to the ways in which recovery occurred for me may have helped. Nevertheless he has a way to go right now and I am full of admiration for his attitude and his patience. We are both very keen to continue to spread the head and neck cancer message.

Thank you Fergus!

Time for change. Transitions. 

I’ve written before about the transitions in my life (retirement, leaving Sydney, family etc) before and I am now, 2 years 4 months post head and neck cancer diagnosis recognising a shift in my emotions, signalling change. Even good change has its downside. I am a little more emotional as I consider how far I have come. I am also feeling the feels about ageing…and turning 70 in 2 months. Our twosome relationship in our marriage continues to be strong as we navigate life at ‘this end’ together. Family is less connected to us now as caring is no longer required and they are all just about grown up.

It’s of great interest to me to know how quickly the changes occur. Sometimes we may blink and miss them. On the weekend, our daughter and 3 of her children came for Saturday lunch. We even managed some fun games outside. I admit “we” the oldies got tired very quickly. We also did a a bit of a nostalgic look at one’s growing up years. She will be 23 later this year Yikes! Where is that time thing going? Nevertheless, my afternoon’s phone call from my 96-next-January-Dad reminded me we are all going OK.

How is Spring going for you?

Had you heard about head and neck cancer before my diagnosis?

Denyse.

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Women Of Courage Series. #19. Jan Wild. 98/2019.

Women Of Courage Series. #19. Jan Wild. 98/2019.

A series of blog posts on Denyse Whelan Blogs to be found here from mid May 2019: Wednesdays: each week.

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

Today I welcome Jan to the series. Jan and I connected via blogging and, I admit, to us both being in our retirement years. Jan at 65 is an amazing role model to many, including me, in her ‘get up and go’ attitude to what life brings. Jan is currently on a wonderful holiday overseas and is staying in touch via social media. I hope the vacation is going splendidly!  

 

 

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

As Denyse says we tend to downplay our own courage and I admit that in answering this question I didn’t feel very entitled to the description of courageous. So I had a look at some definitions and liked this one for courage; “strength in the face of pain or grief”.

I realised then that I had been courageous in my life on more than one occasion. No not big saving someone’s life courage, more personal decisions related to my own life.

The thing that comes most to mind is leaving my job and taking 12 months time out to improve my health. This was due to my having suffered two grand mal epileptic fits. I don’t know about courage, I felt I had no choice than to address my health as my top priority. But of course it was courageous as I was not in a relationship where I could depend on someone else bringing in income and I needed to sell a property and dip into my savings to fund my living expenses for the year.

 

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

Making that decision really did cause me to rest on my own resources and my resilience. I moved to Hawks Nest in NSW and ate simple healthy food, walked on the beach, swam in warm weather and spent plenty of time resting. I also took up hand painting ceramics, something I had not done previously, it was a great creative outlet.

 

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

I learned that taking a risk doesn’t have to be a disaster. Health wise there really was no choice, financially it was challenging. But I took the time to readjust my expectations and indeed my expenditure. I would shop to a tight budget and there would only be a treat if there was money left over. There were no new clothes or overseas trips but I knew my health was improving (and I have not had any further fits).

I learned to really enjoy my own company and to move in accordance with my own rhythm of life. I recommend anyone who can to try that for themselves (and I know it isn’t always possible).

 

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

I’m not sure that it has made me more courageous, on reflection I have made several decisions which others may consider courageous. But I have no desire to do any extreme sports and I am very cautious in many parts of my life so I think my answer is no. Although I do know that I am resilient and able to cope well in many situations (not all though).

 

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

Yes, if possible, consider the alternatives, do your homework and make a well-considered and well-planned  decision. Ask yourself  ‘What is the worst thing that could happen?” For me (other than deteriorating health), that was running out of money, and I realised that in the worst case scenario I could land on a family member or take a less taxing job than the one I had left (or both of those things).

 

I like reading the ways in which “we” can find ourselves going down the ‘worst case scenario’ route may not even happen. I so need to remember this too!

Thank you Jan.

Denyse.

 

 

Blog/Website: https://www.retiringnotshy.com.au

Twitter: @RetiringNotShy

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

Instagram: retiring_not_shy

 

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

On Thursdays I link here for Lovin Life with Leanne and friends and on Fridays, it’s Open Slather here with Alicia.

Copyright © 2019 denysewhelan.com.au – All rights reserved.

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Women of Courage Series. #18. Margaret Jolly. 96/2019.

Women of Courage Series. #18. Margaret Jolly. 96/2019.

A series of blog posts on Denyse Whelan Blogs to be found here from mid May 2019: Wednesdays: each week.

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

There are some people who come into our lives you do not have to ‘meet in real life’ to know you would enjoy having a conversation and getting to know them. Margaret Jolly who is 57 is one such person to me. We may live states apart but Margaret took time during the early days of my cancer diagnosis to call me and to regularly see how I was faring. I too have taken a great interest in Margaret’s “story” around aged care as she has outlines in her words below. I totally love her photos particularly when they are of her dad and his brother and those from her travels in the UK. 

 

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

Oftentimes the most courageous thing to have to do is to have a difficult conversation. I’ve been fortunate not to have suffered significant trauma, other than the death of my mother, but being brave, and vulnerable, in having courageous conversations, is a skill that is continually honed.  Most recently, I had to have the courage to tell my Dear Old Dad that it was time for him to go into permanent aged care – the toughest conversation I have ever had to have.  As an HR executive,  I had to have many difficult and courageous conversations which had to be rehearsed to some extent and this was no different.

 

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

It didn’t change me as such, but changed my life considerably.  You don’t know the burden of the weight you carry until it is no longer there

 

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

We put off difficult conversations for fear of hurting others, or of getting a negative response.  The longer you put it off, the more damage you do to yourself, and the harder it becomes.  There is a skill in raising difficult matters; much more difficult with someone to whom you are close, for fear that the relationship will suffer.  But not having the conversation is much more damaging.

 

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

Yes – honesty is always the best policy

 

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

It sounds trite, but honestly, in a situation which calls for a difficult discussion, you are often in no worse a position afterwards, and in most cases better.  When you find yourself running through hypothetical conversations in your head, it is time to have an actual conversation.

In the words of Dumbledore, Principal of Hogwarts – “It takes a great deal of bravery to stand up to our enemies, but just as much to stand up to our friends.”

Thank you so much for your story which is told with honesty and candour. It “is” indeed one very very hard conversation that you had. I know you are not alone in this matter of future care for family members either.

Denyse.

 

Blog/Website: https://lookingafteredad.blog

Instagram: @meggsie62  @66theesplanade @imperious_george  @dogsofwoodgate

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 and on Fridays, it’s Open Slather here with Alicia.

Copyright © 2019 denysewhelan.com.au – All rights reserved.

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Women of Courage Series. #17. Lydia C. Lee. 94/2019.

Women of Courage Series. #17. Lydia C. Lee. 94/2019.

A series of blog posts on Denyse Whelan Blogs to be found here from mid May 2019: Wednesdays: each week.

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 have ‘known’ Lydia for more years than I can recall. She remains, however, a woman of some mystery, as this image is the only one I have seen. I am guessing it is Lydia. I also know though, that she is one very caring and helpful individual in my on-line world of friendships. She has offered me some good advice and in fact, some it relates to the person she references in her post. Thanks Lydia for sharing your words. One day, we WILL catch up in person!

 

While I was flattered Denyse asked me to be part of this series, I feel a little bit of a fraud, as I’m not sure I’ve done much with courage. However, as it would be a lack of courage not to accept, I will try my best to offer something useful. Courage is not just bravery, it also has the definition below:

Courage: Strength in the face of pain or grief.

When my father was dying, it was a long and drawn out painful affair. I had to drive two and a half hours every second day to visit him in the hospital. I was working myself into a tired and emotional state on the drive over there, and finding the visits understandably distressing. By chance, to quash my irritability in the traffic, I started listening to audio books. This found me at least on arrival, refreshed and in a good mood, as all my stream of consciousness had been hushed with the external focus.

By chance I listened to This is How by Augusten Burroughs.

This book was a life changer for me. He has a chapter on how to let someone die, and it really altered my understanding of what I could give my family at this most devastating time. The tips I express are his but they worked 100% for me and the by product from doing the small things is the courage defined above.

The first thing he called out is that you will want to find ways to avoid visiting. And it’s true. I kept thinking ‘I need to do this for the kids’ or ‘I have to get this work done’ and so on. The minute I heard his words, I realised it was all unimportant for now, and the visits were the only thing I would really regret not doing.

Secondly, he points out what matters. The special moments you will share that seem insignificant or even mildly unpleasant at the time become something you treasure. One of my favourite memories with Dad was when I took cake for my birthday and we ate it on his hospital bed and laughed at our gluttony and how much better it was than the hospital food. There was such a strong connection that day. In our shared lifetime, this was not one of the ‘big moments’ but it is something I often think about fondly now, and it brings me much comfort.

Thirdly, I’m the youngest in my family. My mother and sister were dealing with it differently to me, and that’s okay – I honestly believe there is not ‘right way’, only what is right for you, and most importantly, for the dying person. It gave me the job of making sure Mum was coping, and would not grieve the difficult decisions she had to make over the myriad of medical options and how to process the conflicting information from the many specialists involved. That job made me busy and feel productive and helpful in a situation where we were really all helpless to ultimately fix anything.

 

In a very strange turn of events, I had a number of concerts already booked, and I kept going to them, even if I didn’t feel like it or as happened one time, I cried in the taxi on the way to the venue. What I discovered was the dancing and energy of the audience was transformative. The endorphins from the exercise and joyous high I’d get would reset my emotions for the next day, so I was recharged to visit again and bring the little gifts of being truly present to share with him.

Our natural instinct is to shut down when facing grief but it’s actually the worst thing in my opinion. I became an expert at compartmentalising my emotions. It’s important to grieve and feel that loss and sadness, but it’s equally important to energise yourself so you’re ready for the next day’s emotional battle.  If worse comes to worse, just leave and go home early if it’s all too hard. I told myself that a few times but it never did pan out that way.

 

One of the benefits of this compartmentalisation was that I became very good at focusing on one step at a time. I could encourage Mum to stop the ‘what if’s’ and just make decisions on the information we had at hand, and make one decision at a time, not trying to second guess ahead. It reduces the enormity of what is happening and the overwhelming responsibility.

 “We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it as not as dreadful as it appears, discovering that we have the strength to stare it down.”  Eleanor Roosevelt

In all things medical, one step at a time is all you can cope with.

Eat well. I ate my emotions – usually in the car on the way home from the hospital. It was not good for my weight or my energy. But long time readers will know I’m far from perfect so this one is a ‘do as I say, not as I do’. Had I not eaten junk daily, I might have felt better about things in those down moments. But as Augusten Burroughs says “Eat the brownie”. Sometimes food is the only happiness you’ll have that day. I’d probably do the same again so I’m not going to judge anyone on this.

If you can, during this time, exercise instead of drinking. Both will take the edge off, but one is better for the next day (and your waistline if you are eating a junkfest to feel good).

It is never a good time, but you can make it better for all involved, and for yourself so you don’t regret choices you made when it’s too late to change anything. Most of all, you are making it as best you can for that loved one who is finding their own courage when you aren’t there.

“Life is what you make it. Always has been, always will be.”  Eleanor Roosevelt

This is not medical advice, it is just what worked for me. If you are under stress and feeling it is too much, please see a doctor. Grief causes stress and disorientation and can lead to anxiety. Always seek medical help if you feel overwhelmed.

Wow, Thank you so much Lydia. Your recommendation of Augusten Burrough’s book was just what I needed to listen to last year. I am sure there will be readers here who will be nodding along with some of your insights gained personally and learning of others.

Denyse.

 

Social Media: https://www.instagram.com/lydiaclee/

Blog/Website: https://pandoraandmax.blogspot.com/

And Travel Blog https://holidazeandhellidaze.blogspot.com/

Twitter: @LydiaCLee

Facebook Page (not personal account): https://www.facebook.com/lydiac.lee.9

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 and on Fridays, it’s Open Slather here with Alicia.

Copyright © 2019 denysewhelan.com.au – All rights reserved.

 

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