Wednesday 13th November 2019

Self-Care Stories #6. 42/51#LifeThisWeek. 105/2019.

Self-Care Stories #6. 42/51#LifeThisWeek. 105/2019.

In the past of this series I have written about daily routines, helpful strategies and learning about self-care for me. I have referenced people who have helped me in my quest. Some of my posts can be found here, here and here.

This week’s is different.

Read on to see why.

Where Do I Start?

Not at the beginning in this case! I start with what I think was/is for me a big issue in terms of self-care.

Believing the stories I am telling myself even when there is no evidence nor reason.

What Do I Mean By That?

I’ve been making big progress in terms of my on-going wellness physically and emotionally, particularly related to head and neck cancer, and in every day life practices ….or so I thought until last week.

On Wednesday last week I had the worst headache I had ever experienced since getting migraines waaay back in my 30s and 40s. I woke with it and it was unrelenting. I ended up, most unusually for me, vomiting once. I did not want to eat, felt nauseous, nothing appealed and I spent a miserable night tossing and turning because “I was making up so many stories about what I HAD DONE to cause this to MYSELF”

On Thursday it has settled more but my mind continued to play that above “rubbish” in my head. In fact, my husband and a friend said “maybe you have a virus, or even the flu”. No, not me. I couldn’t accept that. Again….”what did I do to get this?”

On Friday, bit better but not right 100%, another example of my story-telling which came to mind. When I felt I needed to use a toilet quickly because of symptoms of IBS. I “blamed” my inability to manage my emotions and spoke to myself harshly. I won’t repeat the words.

but by the end of that Friday I was so, so ready to

SHUT

THAT

VOICE

UP

and then this is what happened.

  • I felt the feelings and did not like them but I did know why they stayed.
  • I had felt ashamed to admit my health vulnerabilities.
  • I used to think I did have something wrong (and that is true) but until I had a diagnosis from my GP or someone with a medical qualification I hid behind my stress.
  • It has been like this for me probably since I was young. No-one (as I see it) in the 1950s and 1960s brought their kids up to speak of emotions and be able to be heard. In fact, I don’t think our generation did a good job either. We may have been more understanding but I guess “we wanted a happy, not crying kid” too.
  • I made an appointment to see my GP next week. I then examined how my physical symptoms were and they matched either a virus or a form of the flu. At the time of writing they are still there but I am managing them better.
  • I chose to treat myself with compassion.
  • I told myself I had not CAUSED anything to happen. I relaxed and took care of myself with food and water and kind inner conversation.
  • But wait, there is more.
  • You see, the old old issue for me of shame and embarrassment around my bowel habits continued to be one where I took myself to task often. Add to this a rectocele I also need to manage and I started to ‘hate needing to go to the toilet or find one wherever I was’ and I blamed me.
  • I knew though that I needed to change that darned voice and SOON.
  • I did.
  • I wrote about it. In my on-line journal. It also helped to read it aloud to my husband.
  • It relieved my stress to such a level by that Friday night and into Saturday (time of writing) I have been:

A very pleasant person to be and to live with.

What a significant self-care story this turned out to be.

But of course, you just can’t turn a belief on its head like that…because our minds like to play with us.

IF I had not already done a lot of self-education about self-compassion, having courage and learning from Brene Brown, Kristin Neff and My Calm Meditation AND all the courses I have done, including seeing a psychologist ….and having a trained counsellor husband who has, ahem, talked me down from quite few heights of emotion…then I could not have done this.

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”

Brené Brown, The Gifts of Imperfection

Self-compassion involves acting the same way towards yourself when you are having a difficult time, fail, or notice something you don’t like about yourself. Instead of just ignoring your pain with a “stiff upper lip” mentality, you stop to tell yourself “this is really difficult right now,” how can I comfort and care for myself in this moment?

Kristin Neff, Self-Compassion.

So, I thank you for reading this far. I have felt a bit vulnerable in owning up to what was keeping me stressed in some areas of my physical health but I have done it.

Two images with quotes which have helped me grow as a person are shared here:

Denyse.

P.S. The story does not stop here. No. Unless I continue to practise and recognise my self-care and compassion, then my negative/default mind (it’s how all of our brains operate) will revert pretty darned smart. So, I will return to this book, where I began completing the pages. Sometimes it IS hard to look at yourself with a reality check. But I know this helps me. Onward….and away from old thoughts, memories of shame and embarrassment.

This is the book I use.

 

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!

Next Week’s optional prompt is: 43/51 Your Favourite Book As a Child 28/10/19

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Self-Care: Share Your Story #5. 34/51 #LifeThisWeek. 89/2019.

Self-Care: Share Your Story #5. 34/51 #LifeThisWeek. 89/2019.

The past few weeks have been less about self-care and more about caring what others think and say.

I “know” that is not the ideal way to live my life going forward but in some ways I think it’s connected with a major life-experience which was about to occur at this time of year in 2002. I wrote about it here. I get to this time of year and ask myself ‘what’s wrong?’ when I have nothing much happening to make me feel a little less confident and emotional. Then I look at the date. So, knowing this helps and it reminds me to accept that I still have sad feelings about how I had to walk away from my principal’s role but that I also got on with my life as best as I could once the first 12 months of being treated for the effects had helped.

I have written about this in a series of posts last September if you would like to read them.

September Stories 1. September Stories 2. September Stories 3. September Stories 4.

I also used my story for my Women of Courage post, here.

Self-Care and What It Looks Like Now For Me.

Appreciation For The Support & Love. Moving On.

 

Doing this more. Getting Outside.

 

If I do not care for my mouth and prosthesis properly then I am not self-caring for my physical health. My daily routine.

 

This was something different. Very small pizza, takeaway. Two meals! Worth it? Not really but I gave it go.

 

Using some of my me-time for creating and liking the results.

 

My daily coffee, treat and using my mini art journal. Getting out every.single.day. whether I feel like it or not IS the best self-care I have.

 

Letting others know of my appreciation for them. Self-care is shared.

 

This was important to me from a self-care and love viewpoint. Top images this year, bottom ones a year ago. I was so pleased, despite some weight gain (with teeth!) I could still wear the clothes.

So I found some examples in the end. Thank goodness. I haven’t really lost the ability to self-care, it’s just a blip in the progress I am making and I am honest enough to share the reasons as I see why.

How is your self-care going?

What’s your best tip for when you are least feeling like being self-caring?

Denyse.

 

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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Self-Care: Share Your Story #4. 28/51 #LifeThisWeek. 77/2019.

Self-Care: Share Your Story #4. 28/51. #LifeThisWeek. 77/2019.

This week I will be completing week 8 of a ten week “moving for wellness” from the N.S.W. Department of Education as part of the Premier’s Sporting Challenge. I was kindly allowed entry as a retired principal …and it has been such a good boost to my physical and emotional health. I got a pleasant suprrise last week…I am doing better than I ever thought I might.

 

For this week’s self-care story it’s about:

  • finding a better balance between ‘doing for others’ and ‘doing for me’
  • learning about something new to help me use my phone with greater ease
  • making myself get into the outdoors more..no matter what the weather
  • allowing  time for morning teas out and meeting people and loving it
  • daring to go somewhere challenging & despite some difficulties emerge from it with greater self-confidence
  • accept that to grow, I still need to remind myself to do the hard things. Posts about that here and here.
  • returning to art-ing as a daily and creative habit after some time away and loving it more because of that
  • being well….because I have such a great team who have cared for me since I got cancer two years ago (posts here) and it’s UP TO ME to stay this way

What’s been your level of self-care lately?

Denyse.

 

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!

Next Week’s Optional Prompt: 29/51 Winter: Like/Loathe 22/7/19. 

I will not be following the optional prompt as I have been remiss in updating Telling My Story, so I will write the next post for that instead.

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I Am Grateful Series. 81-100. 69/2019.

I Am Grateful Series. 81-100. 69/2019.

I am grateful every day.

This is the last of the series of “I am grateful”. I know more now that I ever did that just stopping for a moment when I feel down or a bit anxious, to think of something I am grateful for can change my inner mood. I continue to be amazed by that and I am glad to remember to do this!

Since learning more about myself, from before, during and after my cancer diagnosis, I know that I am better emotionally when I express gratitude.

  • I do this in a number of ways.
  • I will silently think of 5 or 10 things (using my fingers!) that I have been grateful for that day before I go to sleep.
  • I always express my gratitude to the person who has served me and made me my coffee. There are very few exceptions to this and watching someone’s face light up means the gratitude bounces back I guess.

A few years back I wrote a post about gratitude and how I was keeping a journal then. I am re-posting here what was, and still is, an excellent source about the value of:

GRATITUDE

The social benefits are especially significant here because, after all, gratitude is a social emotion. I see it as a relationship-strengthening emotion because it requires us to see how we’ve been supported and affirmed by other people.

Indeed, this cuts to very heart of my definition of gratitude, which has two components. First, it’s an affirmation of goodness. We affirm that there are good thing in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.

from here.

I have been going out each day since late October 2017, dressing with purpose and having a coffee. In my small journal I might do some art or I might write to get my thoughts out.

Recently, I gave myself the challenge (I like a challenge!) of coming up with 20 things I was grateful for over 5 days, making a total of 100.

Over the past weeks I shared those groups of 20. Today’s is the final list. Of course, the grateful list can go on and on! I am sure there will be more.

81. That I am less impulsive in shopping now

82. Cool weather after heat waves

83. My behaviours when I am particularly stressed can few modified by me now with skills I have learned

84. Local ‘BIG’ shopping centres for browsing, people watching and sometimes buying

85. Waiting more patiently now: for big and little things/experiences

86. Realisation that eventually being able to buy our own place may not be ‘the be all and end all”

87. I have a range of strategies for self-help and modifications to my attitudes and behaviours

88. That I know what unconditional love it as a giver and recipient

89. My mind continues to stimulate me with new ways to create in art

90. Seeing young families interacting reminds me of the ‘load’ we can seem carry as parents but appreciate it is over before we realised it!

91. Sending appreciation in greetings, cards and gifts to those who have helped me or just to help someone know I am thinking of them.

92. Mandalas. I love to make them but I ‘see’ them everywhere too

93. Succulents: I am growing them successfully and love their patterns

94. My second favourite coffee order of a piccolo will do me if I can’t get a double shot small latte

95. Icing. On the little cakes. I know I am being a bit flippant here but I love the sensation and the taste. Much moreso since cancer in my mouth

96. Cooking for others in batches because I know it helps them to eat and me to share.

97. Being a planner. Not an over the top one as I was, but keeping appointments and so on.

98. My art journal and kit I take with me everywhere

99. Finding that I had cancer in May 2017 and that it could be removed and it was

100. That I am very grateful to be alive and living well.

101. For you, my blog readers, for being here and commenting! Oh so grateful.

 

How do you express gratitude?

Denyse.

Joining in with Min here for her Tuesday #ztt link up. This week will be the last for a while. See Min’s post.

Thank you readers who come here on Tuesdays to comment.

I came back to Tuesday blogging to support Min and to write on topics which fell into the broad groups via Zen Tips Tuesday. I was fortunate to be a guest poster here too. For now, and the foreseeable future I will not be writing posts as regularly on Tuesdays with the exception being in the lead-up to World Head and Neck Cancer Day on 27 July 2019.

                  Beyond Five.

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. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

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I Am Grateful Series. 61-80. 66/2019.

Beyond Five.

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. More about that as we get closer to World Head and Neck Cancer Day on 27 July.

 

 

 

I Am Grateful Series. 61-80. 65/2019.

I am grateful every day.

Since learning more about myself, from before, during and after my cancer diagnosis, I know that I am better emotionally when I express gratitude.

I do this in a number of ways.

  • I will silently think of 5 or 10 things (using my fingers!) that I have been grateful for that day before I go to sleep.
  • I always express my gratitude to the person who has served me and made me my coffee. There are very few exceptions to this and watching someone’s face light up means the gratitude bounces back I guess.
  • I consider how another person’s day may be going and ask them how they are because we connect that way and I am grateful for the exchange.

A few years back I wrote a post about gratitude and how I was keeping a journal then. I am re-posting here what was, and still is, an excellent source about the value of:

GRATITUDE

The social benefits are especially significant here because, after all, gratitude is a social emotion. I see it as a relationship-strengthening emotion because it requires us to see how we’ve been supported and affirmed by other people.

Indeed, this cuts to very heart of my definition of gratitude, which has two components. First, it’s an affirmation of goodness. We affirm that there are good thing in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.

from here.

I have been going out each day since late October 2017, dressing with purpose and having a coffee.

In my small journal I might do some art or I might write to get my thoughts out.

Recently, I gave myself the challenge (I like a challenge!) of coming up with 20 things/experiences I was grateful for over 5 days, making a total of 100. Over the past weeks and one last time next week, I  share the groups of 20.

61. That I got to live at 61 Curban St from 1959 till 1970

62. That my Aunty Poppy who died at this age, showed me what unconditional love was

63. My family: close and extended cares about me

64. That I am in essence a creative person

65. Cooking is a fun way to create: when I am in the mood

66. Colours delight me

67. I love to drive and staying safe is #1 priority & I got my licence in ’67!

68. My mind – given a good challenge and coming up with the answers

69. “Enough” money for coffee and a treat most weeks

70. That I “WILL” get to 70 on 30 November 2019

71. My ability to choose foods with better health outcomes than I used to

72. My recliner chair. Ahhhhh.

73. Warmth of the heated pad on my back in said chair..Ahhhhhh

74. ACCEPTANCE is a growing concept I am getting embedded within

75. My support for others with head and neck cancer is 100%

76. Walking. That I can. I do want to walk more too.

77. Enough clothes now for every season and reason and in my size.

78. My continued connections with education

79. That my husband has his space for his work and hobbies

80. That I too have my space for the above.

How do you express gratitude?

Denyse.

Joining in with Min here for her Tuesday #ztt link up.

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I Am Grateful Series. 41-60. 62/2019.

I Am Grateful Series. 41-60. 62/2019.

I am grateful every day.

Since learning more about myself, from before, during and after my cancer diagnosis, I know that I am better emotionally when I express gratitude.

  • I do this in a number of ways.
  • I will silently think of 5 or 10 things (using my fingers!) that I have been grateful for that day before I go to sleep.
  • I always express my gratitude to the person who has served me and made me my coffee. There are very few exceptions to this and watching someone’s face light up means the gratitude bounces back I guess.
  • On some days when life just feels ‘blah’ I have learned just to find something (0ne thing!) to be grateful for can make the mood shift.

A few years back I wrote a post about gratitude and how I was keeping a journal then. I am re-posting here what was, and still is, an excellent source about the value of:

GRATITUDE

The social benefits are especially significant here because, after all, gratitude is a social emotion. I see it as a relationship-strengthening emotion because it requires us to see how we’ve been supported and affirmed by other people.

Indeed, this cuts to very heart of my definition of gratitude, which has two components. First, it’s an affirmation of goodness. We affirm that there are good thing in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.

from here.

I have been going out each day since late October 2017, dressing with purpose and having a coffee. In my small journal I might do some art or I might write to get my thoughts out.

Recently, I gave myself the challenge (I like a challenge!) of coming up with 20 things I was grateful for over 5 days, making a total of 100.

Over the  past weeks, I’ve been sharing  these groups of 20. This is my third set of 5 groups.

I Am Grateful: 41-60.

41. Understanding myself better

42. Acceptance of differences between me and others

43. A spirit of generosity

44. My conversational approach with people

45. My S M I L E…it’s back!

46. My greater knowledge of nutrition to help me eat better

47. My ability to weigh up situations independently

48. My RED car: always

49. Weather and climate here where we live

50. My B E D

51.  A range of social media followers

52. Pillows. So many. So needed.

53. Noticing nature

54. Details: I see the details everywhere

55. Patterns: I also see them everywhere

56. My moral code

57. Honesty: appreciating others’ honesty too

58. Telling My Story: on the blog: over time

59. That is IS a story worth telling.

60. My memory: already listed this: so will now wonder about memory and say “memories”

I am grateful of course to you, my readers and fellow bloggers and to Min whose link up is called Zen Tips Tuesday and is found here.

Thank you!

Denyse.

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Self-Care: Share Your Story#3. 21/51#LifeThisWeek 58/2019.

Self-Care: Share Your Story #3 21/51 #LifeThisWeek 58/2019.

You know I thought I had self-care pretty well sorted. Turns out that is not always the case.

Back story:

I talk about and write about self-care but….when it comes to me, there are times I neglect to take into account some of my life circumstances and events where I may need to UP the self-care.

Does this make sense?

I found, to my detriment, that the need for self-care is especially high when I have:

  • had a time of remembering cancer’s decision to lodge in with me 2 years ago which I wrote about for several weeks before the 2 year anniversary
  • more emotions tucked under my more confident exterior than I realise
  • been to a cancer-centred place and
  • had a cancer check at said place

That was my Tuesday 21 May 2019.

How did I come to this conclusion?

From a 9 a.m. departure from home, to a 4 p.m. arrival , I realised, even though I love driving& returning to Sydney, that it had been a BIG day:

  • finding a park somewhere near any hospital is a pain but I did, it was quite a hike away & the carpark was not made for SUVs (mine is not huge!)
  • being on time for my catch up is important to me as was getting a double shot latte (and lemon delicious tart) into me before the meeting
  • having a good talk with N from Beyond Five and seeing my head and neck nurse too
  • leaving some art materials with the art program head at Lifehouse and being asked to come back to speak to other cancer patients about my positive take on life after a cancer diagnosis and how art helps me
  • being surrounded by the legacy of Professor Chris O’Brien in this amazing place, Lifehouse, named after him
  • viewing his memorabilia marking 10 years since his passing, even though I did not get to meet him, I have met his wife
  • attending my 3 monthly check marking 2 years since cancer diagnosis
  • getting good news (I guess) that there is no cancer present but I will need a CT scan next week….and be back for a check up in 4 months
  • having a wonderful chat and laughs with both my surgeon and nurse
  • them showing appreciation of my role as an Ambassador and getting some photos taken

and that without having cancer, I would not have been there nor had these experiences.

So: I HAVE had cancer and it’s always present (in mind if not body: cross fingers) and when that sank in, and I was tired & teary the next day…with some evidence of my old faithful emotional measure, IBS…

I KNEW what to do NEXT time.

For optimal self care I need to  allow the day after a big one like this to be a transition and be gentle to myself. In words and actions. Some art, some time outside in nature and something nice to eat with my coffee and to manage some more mindful and compassionate times telling myself how that’s been a tough time, but how I am caring for myself better now.

Oh. The new Apple Watch is helping me too. Stopping to breathe mindfully  or one minute every hour and counting my activity as it is good for me to be active – within the limits of my current physical health.

That’s what I have been up to.

 

Do you find you need a ‘day of rest or better care’ after a big event of any kind?

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!

Next Weeks’ Optional Prompt: 22/51 First Job. 3/6/19

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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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