Friday 27th May 2022

Living With Cancer & Uncertainty. 4/51. #LifeThisWeek. 5/2022.

Living With Cancer & Uncertainty. 4/51. #LifeThisWeek. 5/2022.

I go to BIG places to help get me out of my small place: in my head!

  • In the week leading up to World Cancer Day, I wanted to share facts from the website, and here it is….and to also add my update at the end of the post.
  • Each of us will be touched by cancer in some way: directly via a diagnosis, being a partner or in some way related to someone with cancer and maybe knowing of friends and acquaintances who have had cancer.
  • Sadly as we all know, not all of those people survive a cancer diagnosis and I want to say how sorry I am about that. I also know some people reading here have cancer and I want to wish them well.

World Cancer Day 2022.

 

Head and Neck Cancer.

Head and Neck Cancer colours are maroon & white

 
Today I want to share this:
 
1. I am now in my 5th year of recovery from Head and Neck Cancer (HNC as we call it)  and much is not the same for me now BUT I am alive and well
 
2. I do what I can, within my skills list and experiences, to share about HNC various symptoms which can be seen as often nothing to do with a cancer. My own diagnosis took over a year.
 
3. Every day people I know of or through others know about, are dying from head and neck cancer. This is the sad news. Always.
 
4. I can only share my condolences to their families and friends and can continue to do what I do, with a sombre heart.
 
5. There are friends here who are suffering….from the long-lasting and ill-effects of this brutal Head and Neck Cancer and yet, they live.
 
6. They, like me, “Live With HNC and its effects”. I for one am grateful for that and that they are here too.
 
7. I know of people too, who are not doing well at all now, and are unlikely to improve, and in fact, will succumb when the HNC or another type of cancer has destroyed the life within.
 
8. I reflect on this often and I am so, so sorry. And sad.
 
9. I am aware that there are friends who have had HNC who do not share their updates and who prefer, if they can, not to be identified “with” their head and neck cancer. I respect that so much.
 
10. I will continue, as I do today, to honour all who have had the personal challenge of head and neck cancer, and those whose loved ones have died because of it.
 
And please do not ignore what might be signs of cancer. Covid has impacted people getting seen by doctors and going to hospitals because there is a myth they won’t be seen or it is not safe. Sadly, that has been creating a cohort of cancer patients now being seen much later and effective treatment may be hampered.
About Uncertainty.
  • It’s everywhere we look and see today.
  • Not only about health and cancer but more so about what the Covid Pandemic is doing to us all.
  • We have been in various levels of uncertainty for almost 2 full years now.
  • I know I have started to feel somewhat more anxious playing the wait and see of maybe getting a covid diagnosis. 10 PCRs & 2 RATS in 2 years: No.
  • I thought I would be better equipped to manage my somewhat anxious self as I have needed to garner my strength and capacity to deal with around 3 years of pretty serious and life-changing times.
  • First a cancer diagnosis, then hearing about my surgeries and having them…and then SO much time for more surgeries and recoveries and check ups and treatments….and that finished in some ways because of Covid, so I only had 2 in-person cancer checks in 2021.
  • I have no signs of cancer. I am grateful
  • But then I have some of my way back anxious feelings creeping back…connected to health for other reasons, whether we get to keep renting this house (have you seen how much real estate has risen…in our street alone, over 45% in 12 months) if the rent is too high….and more…and I don’t like it!
What am I doing…and being?
  • I practise Calm meditation morning and night.
  • I get out into nature every day.
  • I have disengaged with twitter for now. I was getting very angry about how our leaders were/are behaving.
  • I talk with B about it
  • I tell myself “this too shall pass” and “I have been like this before and it ends” and I believe me
  • I am listening to helpful books I have downloaded and am enjoying learning some more about ageing….
  • I am seeing my GP again soon, to hear how my recent test results were and “what the heck” has been wrong with me since late Nov. (Dear readers, I think it was me overdoing the doing and then getting a bit sick and then more worn out and I did not recognise it till a few weeks back….)
  • I am reducing my exposure to crowded places like a supermarket and using the NSW Service Check In App
  • I know it will eventually be something I can live with more easily
  • I have found some of my better health & mindfulness  resources from years ago and giving them another listen and read.
  • And colouring my world of course..helps me heal and stay well.
It also helped HUGELY last week to have a treat day of almost all the family visit us. Some we had not seen up here for over a year. Filled our hearts.
  • May you all be as well as you can be in heart, spirt and mind today, and onward.
  • I send my best wishes to you and yours who have been, and are affected  by cancer.
Denyse.

Life This Week. #275. 24.1.2022.

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Comments

  1. Happy Monday Denyse! As always your posts are honest and from the heart. I can’t believe it has been 5 years since HNC and thank you as always for putting the spotlight on a relatively lesser known cancer. A friend from high school’s husband just passed away after being diagnosed with liver cancer in October. They had been together since high school and he was 64. So very sad. It can be easy to let anxieties of life and health take over can’t it? I am prone to being a’worrier’ like my Mum, but trying to improve it is always a WIP

    It is a worry with the possibility of having to find somewhere else to rent and up here in Queensland the real estate market has gone crazy!
    I like the way you are handling all that is throwing your way with the constant support of Mr B. You are an inspiration Denyse. Take care and thanks for hosting #lifethisweek xx

    • Thank you Sue, it’s nice to have your kind words for me to read as I know they are from the heart.

      Cancer is an unforgiving and relentless beast alright and the figures of who will get a cancer of any kind are about 1 in 2 as we get much older…much older!

      I am sorry to read that about the friend’s husband. I have to always temper my enthusiasm for my recovery by remembering that not everyone has a good outcome.

      The worry gene hey! Yes, mine is from my Mum too. At least recognising it means we can self-soothe and bringing kindness to ourselves forward.

      We just heard what the new rent will be, and suffice is to say, it’s gone UP but with the knowledge we can make adjustments to our living costs, we will be staying on for another year from April. Phew.

      Take care,

      Denyse.

  2. Oh my, that 5 years has flown by. We lost someone from our early morning beach walking community to a HNC at Christmas after a relatively short timeframe. It’s not well understood and you keeping the spotlight on it is a good thing. The real estate market has gone bonkers and I can only imagine the additional pressure and anxiety that places you under. Take care and keep on doing what you’re doing. x

    • Yes Jo, in so many ways it has but in other ways, hey, it’s been ages. If I recall your 5 years on the Sunny Coast happens this year too. Gosh, and I remember your house in Kings Road being sold and all the many, many changes you faces. Now…wow!

      That is so sad when HNC takes someone swiftly. Some versions of HNC are like that. It’s only recently I have found out mine is rare and unlikely to metastasise…but I never say never!

      We just heard what the new rent will be, and suffice is to say, it’s gone UP but with the knowledge we can make adjustments to our living costs, we will be staying on for another year from April. Phew.

      Take care,

      Denyse.

  3. I hear you on the uncertainty of our times Denyse and feel for you with lots going on. You are always so honest and open with sharing your thoughts and it is appreciated by many I’m sure. You are a wonderful ambassador for HNC and continue to do your best for those suffering and their families, with your posts and updates.
    How special was your family get together with so much love and happiness shown to you and B!! Lovely photos and I love that the dolls house got played with again 🙂
    Take care of yourself, thanks again for hosting us for #lifethisweek

    I’ve shared a new monthly linkup we’re hosting for those who have a WOTY and want to write a monthly update to help keep their focus.

    • Yes it’s got to be word of the year for us all “uncertainty”.

      I appreciate your kind words and understand it is my heartfelt posts that give more insight into my life “as is” …last night I changed the topic to an extent for the post itself, taking out some facts and figures and adding in the ‘real story of how it is’ and I am glad I followed my instinct.

      Yes to an amazing and fun-filled fest on Friday with the grandkids. I haven’t seen the kids play with the dolls house for ages so it was good to see.

      We just heard what the new rent will be, and suffice is to say, it’s gone UP but with the knowledge we can make adjustments to our living costs, we will be staying on for another year from April. Phew.

      Take care,

      Denyse.

  4. Denyse you are so resilient and have a wonderful way of handling all that is thrown at you. Its hard to believe it’s 5 years already! I’ve just heard that a friend passed away due to cancer over the weekend so feeling quite sad. How wonderful to have your family together after so long.

    • Thanks so much Jennifer. Cancer is non-discriminatory and stats of getting it are 1 in 2 by the time we are much older. I am so sorry about your friend.

      Five years in May for diagnosis and in July for the big surgery but right now is when I remember 5 years ago how the stress was inside me and my worry about ‘what was behind those teeth’. GLAD to be on the other side!!

      We just heard what the new rent will be, and suffice is to say, it’s gone UP but with the knowledge we can make adjustments to our living costs, we will be staying on for another year from April. Phew.

      Take care,

      Denyse

  5. I am so happy you are now cancer free Denyse. That must feel fabulous and such a relief. I can imagine that you would still have anxiety and probably always unfortunately.
    I had good news recently for my own cancer. (Breast cancer in the brain.) I am on an oral chemo now and it is making changes to the existing cancer which has shrunk a little! Fingers crossed it continues to work. Many blessings for 2022 Denyse. xx

    • Thanks dear friend who ‘gets it’. Your story is remarkable too and I am so glad that all continues reasonably well for you in 2022. Your resilience since your dear husband’s very early death has been outstanding ….so much respect and love for you.

      You are a shining light in my world on line. Thank you Jody.

      We just heard what the new rent will be, and suffice is to say, it’s gone UP but with the knowledge we can make adjustments to our living costs, we will be staying on for another year from April. Phew.

      Take care,

      Denyse

  6. Thanks for this important reminder that life and health are not to be taken for granted. I think your gratitude for life shines through so beautifully in every single post. I love seeing it and you’re such an inspiration.
    Your time with family looks fantastic – I wish you many more moments like that!

    • Oh how kind your words are Susanne.

      Thank you.

      I has a less personal post ready last night – facts etc about cancer – and then I thought, no, that is not me and what I want to share now, so this is what came about as a result. I like that you can see the gratitude in my words and world. It is a mainstay for me now.

      Time with the family was the best!

      We just heard what the new rent will be, and suffice is to say, it’s gone UP but with the knowledge we can make adjustments to our living costs, we will be staying on for another year from April. Phew.

      Take care,

      Denyse.

  7. Good post, Denyse. A lot of us are finding it hard to cope with the uncertainty that surrounds Covid on top of all the other slings and arrows life throws at us.

    • Thanks Maureen, yes we sure do have a range of things to cover the uncertainty base right now.

      I did think, given the uncertainty I learned to take on board from HNC might help with the covid thing but in its very being & being new/different, we have had to show trust in systems and government and science that it will be OK…and as we know, politics is not the safest of bets there!!

      We are both sending our love and best to our dear friend in hospital now as we did for you, and hope that his outcome is what can give him quality of life moving forward.

      On another note:

      We just heard what the new rent will be, and suffice is to say, it’s gone UP but with the knowledge we can make adjustments to our living costs, we will be staying on for another year from April. Phew.

      Take care,

      Denyse.

  8. Hi Denyse, I’m sorry to hear that the anxiety is nagging at you. These are such uncertain times and we all deal with them differently. It’s hard to watch others in the Eastern States being swamped with covid while we still live fairly protected lives (although we’re all now stuck with mask wearing!) Glad the HNC is still under control, and I see from your reply above that the rental is all sorted for another year – which must be a huge relief for you. It’s good to be able to tick worries off the list and focus on the positives. Also good that you’re taking a break from Twitter if it’s not helping your mindset. x

    • Thanks Leanne, yes it has been pretty horrid having anxiety back BUT at least this time round, I knew the reasons and could offer myself kindness instead of criticism….Being human is one big challenge of course.

      I know WA is doing some things tough right now and families continuing to be separated is causing a lot of concern because of the WA way. I have friends who cannot see their kids or visit grandkids and people are running out of patience. Mask wearing is here for the long haul according to what I am reading and only inside so that helps.

      The rental thing was expected…and yes it went up much higher but considering the rapid increase in real estate values right now it is OK. We will stay here for at least another year and I need that certainty …if you know what I mean.

      Take care,

      Denyse

  9. Of all the diseases and health problems one can contract, I think a cancer diagnosis has to be the scariest. I just don’t know if I have the strength it would take to battle that demon and come out on the other side. But then I see my friend Christina, a breast cancer survivor, who is doing triathlons, running marathons, hiking, swimming, leading exercise classes, living this enormous life. I see you, a cancer survivor with the brightest smile after almost losing your smile forever. And I hope that I could stand toe-to-toe with that monster and be victorious.
    We lost my 3 year-old nephew to Wilm’s Tumor, a kidney cancer. My father worked for years at St. Jude Children’s Cancer Hospital. So cancer has been a part of my life for all of my life. But I am so thankful that I haven’t had to personally take on this foe. You are amazing!!

    • I think I needed a Leslie -sized comment today!! Thank you so much for your kind words and thoughts.

      Yes to how do other people manage this ‘cancer’ thing? I hear you on that and found your examples of interest.

      Five years ago I DID not know what what troubling me in my mouth…no-one was prepared to venture any guesses. I did ask a couple of times “do you think its cancer” and was told “no, not at all.” But the thought remained. And when I did find out it WAS cancer, I did not feel much shock other than “it IS cancer” and it gave me something to work with…

      Now, however, I realise I got through with much learning about myself and what I could do and the fact I had been doing so much for my emotional health beforehand.

      But I used to say to myself “I have cancer?!” and would feel a tightening of the tummy.

      What helped enormously for me was having 100% confidence in the experience and wisdom of my specialist team. Of course I had my caring husband and a great GP too. It’s only recently I have been confident enough to read what my cancer was and about its story. In fact, I am sharing that as part of a post in 2 weeks time.

      What I now say to anyone who fears how it might be getting a cancer diagnosis, is that we never know how it will be until we are in the situation. And from what I know just about everyone does OK.

      Take care,

      Denyse.

  10. Denyse, When you mentioned your 5 year “anniversary”, I realized I just passed my 4 year mark as well. I’ve not become an advocate like you (and I admire your work in this area a lot), and in fact often forget I’m a cancer survivor. I think that’s a good thing for me, since I can become a huge worrier! And yes, the newest COVID surge here in the USA has me worried again. And wondering anxiously every time I wake up not feeling 100% healthy, “do I have it?” I wonder if this is the new way of living? Anxiety and tummy clenching every time I have a slight headache or sniffle… and not just thinking, “ohh too much wine last night or seasonal allergies”.

    • Thanks so much Pat for reminding me about you! I know I can get bogged down in my own story and promptly forget others’. I understand that I am quite a bit different with my sharing but it’s been because of two reasons. One is I am a teacher by nature and two is that my specific cancer was/is so rare yet certain ones still happen to kill people. So, yes Ambassador role gave me something constructive to do and stopped me from feeling so alone.

      The covid surge is every reason to be concerned again and here in Australia it’s been crazy because of the ‘open everything up’ and ‘let it rip’ attitude. Well guess what, politicians we are NOT stupid and so it was/is a very stressful time. School is back from next Tuesday for kids and oh I am dreading what schools need to go through and I am not even teaching any more!!

      And yes to symptoms which may or may not be covid. I know that feeling well and have tested negative because of my fears. Covid PCR testing is free here (but cost to government is $100 per person’s test!)

      Take care my friend!

      Denyse.

      • Here, Covid PCR tests take 48+ hours for results so most people try for the rapid-tests, unless they are symptomatic. Rapid tests cost about $10 a test and I think you can try to get insurance to cover it, but I’ve just bought them, because it was hard to find them even for sale! I have a couple at home right now, and will be taking it before we go visit friends later this week. We are all vaccinated and boosted, but we will be staying overnight with them so everyone is getting a covid test before we get together.

        Most of us are hoping that this latest variant has infected enough people and built up anti-bodies in enough of the population that combined with those who are vaccinated, maybe, just maybe we are over the worst. It will be nice to not worry about testing yourself before a visit with friends!

        • Thanks so much for that. Yes, I hear you on costs (if you can find RATs) as well as time for results from PCR. Interesting to read of your country’s similarities to how we are going too.

          I know it’s not going anywhere soon, the Covid Thing, but we are, in our own ways, doing what we can to prevent it happening to us, particularly if we have underlying health conditions (as the say….and in our case, we do!)

          Cheers Pat,

          Denyse

  11. Lol Denyse…. I can hear my Scottish ancestors saying- she’s a brave wee lassie. I always think of you as being brave – brave enough to tackle the ups and downs that life has thrown at you over the past few years…and brave enough to collate and relate and notate all you have felt and feel others should know about Cancer particularly the Type you were diagnosed with.

    It’s funny (well not really) but for donkey’s years our family used to say….we don’t do Cancer! Heart attacks and strokes but not Cancer. Now the public has access to free Irish BD&M registrations I’m discovering both sides of our family has ‘done Cancer’ but it’s never been spoken about. Extended family have mentioned other known ailments present at death but not the Big C. Almost as if there was some shame attached to the diagnosis……similar in a way to the ‘perceived shame’ some families felt when they were diagnosed with Covid19.

    I’ve found very early morning visits to the supermarket- knowing/hoping their air conditioning + ventilation system has worked overtime overnight clearing the air of ‘nasty bugs’ has helped me enormously from stressing about things unseen but ‘in the air’ that the health boffins keep telling us about. Still not doing small cafés yet.
    Take care
    Cathy

    • Well you have given me quite the compliment there and I can hear your Scottish forebears accents!! Dad’s dad was from Scotland.

      I used to think I was not brave – and still can – but I know I have determination and usually a will to get this done! I find now though maybe I am getting old(er) and less like feeling all those brave feelings so I got a bit down and a bit overdone!! I have probably got to take stock of what I want to actually do with some of my time in 2022 and right now I am letting things unfold….

      I admit that my cancer was a big shock in our family but when I look back, cancer was why Mum died: secondary brain tumours and my aunt who had something like a cancer too.

      I read not long ago by the time we are OLD 1 in 2 of us will have or have had a cancer diagnosis. Dad, at 98, was given a diagnosis of prostate cancer about 15 years ago, and chose to be injected with female hormones and is STILL alive…and still getting those injections!! He doesn’t want to live to 100…but his body is in relatively good nick!!

      Lovely to read your words too Cathy, I appreciate them very much.

      Denyse.

  12. Another great post full of tips to lead a healthy lifestyle. Nice pics too!

  13. It’s funny (ironic) to read a post like this and reflect on cancelling my psychologist. But it’s not adding much to my life right now so I think space is more valuable.

    • I hear you! I’ve been using the “capacity” word a bit lately & I say I’m at my emotional capacity. Knowing yourself best means you only take on what you can/have to . It’s a tough time in your life but pretty sure you will score a gig that is right!
      Take care,
      Denyse

  14. Our real estate market here in the states is crazy too! People are selling their houses for so much and then can’t find anything to buy because everything is snapped up in an instant!

    • Exactly Joanne. Crazy around the world then. I see lots of places up for sale here too and wonder…”where will you end up?”

      Take care,

      Denyse.

  15. There’s a lot here, and I don’t want to be dismissive. I think everyone’s anxiety has risen, and frustration. You have an extra level with experience of a serious illness. I think the anger at the government is growing, even if you vited for them (not you and me, obvs, but I have noticed a shift). We’ve spent two years reading and hearing about the virus and then it appears the government hasn’t understood any of it. Or doesn’t care. It seems very unAustralian, in my opinion. Look after yourself. It’s a lot. It’s a lot for everyone but a lot in conjunction with other things.

    • I understand I am so not alone but it needed to share…and it started conversations we do need to have. Yes to how we are ALL feeling generally. The back to school thing figures greatly in my mind BUT I felt a bit more reassured last night seeing my friend Alice NSW Teachers Fed & HS HT on the Drum with her opinion and she is pretty satisfied and is a Mum of 2.

      Let’s just keep on shuffling to the Federal Election!!

      Take care,

      Denyse.

  16. Your ongoing advocacy for cancer patients and treatment is very much to be admired Denyse. I’ve never had such a serious illness but know the uncertainty we experienced while dad had heart issues, before his heart transplant and then afterwards. There was a lesson for me there in living for the moment and making the most of the time you have but I’m afraid it’s not something I’ve really done.

    • Thanks Deb, I appreciate your kind words. I certainly am MORE aware of needing to keep myself in the moment as best as I can but when all the things mentioned about floated around me, it was hard.

      I think too, being unwell for a time, and even not knowing what/why threw my previous confidence (post cancer) and looking after my thoughts better out the window.

      I am a lot better now so much so to my father’s delight I am driving to Sydney to see him tomorrow and give him more meals and snacks I had ready for 11 January on his 98th Bday when I wasn’t 100%.

      I imagine the memories of those times with your Dad (and being there for and with your Mum) will never fade but they are ones where you can remember all that you could do to ensure his welfare and comfort.

      Take care,

      Denyse.

  17. It’s great that you’ve almost reached a five year milestone – well done!. As you said, much to be grateful for and good to look to the blessings in front of us.

    • Yes it is, thank you Chris.

      I sometimes look back to wonder ‘wow’ and the fact not only did I manage all this different things that were done to my body but came out with greater strength and courage too.

      Yes to what is, right now. Grateful indeed.

      Take care,

      Denyse.