Cancer Sucks, Life at No.22, Musings

Hello, 2019 – We CANcer vive!

Suzanne

Time to celebrate the arrival of a New Year by turning the last digit to 9.  With the chance of another day, week, month, or year.  Most of us will get an opportunity to start fresh in 2019.

This coming year will be strides apart from our usual years of past.  We don’t feel like it’s a fresh start or something to celebrate.  Last night, it seemed more important for us to just “be” to talk when we wanted to and be distracted by a movie.  Then, later on, admire the colourful fireworks from our balcony.  I’m not sure when we will feel like celebrating this New Year.  Just not yet.  Maybe never.

Getting bad news at any time of the year is never welcome.  It’s arrival during the festive season.  Sucks.  Being unwell during the festive season is a significant downer when it feels like a requirement to have a cheerful disposition before stepping out the front door.  It has made me feel like Mrs Grinch.

Our Grinch-like thoughts, feelings of anger, sadness and wanting to do a F*cketlist all started a few months ago.  When the Squire went for his yearly medical, if you don’t want to be sick, don’t go to a doctor.

A medical, nothing extraordinary about that.  The findings were astonishing and held a few surprises.  The tests confirmed that the Squire had an enlarged spleen and liver.  Then came the multiple blood tests, more scans and the excruciating pain of a bone marrow biopsy.

Not long to wait.  Just weeks.

I scream he is too young, only 60.  He is my gentle, indestructible giant.

Les by the kiwi Christmas tree

We lived in denial.  Nothing is wrong.  We have hope.

One day at a time.  We repeated it daily.  It was our mantra. 

Don’t plan.  Just yet.  Time is on our side.

Don’t google.  It only creates more questions.  It answers none at all.

Just wait.

We can do this.  We are strong.  We are a team.

Before we knew it, the Squire had an appointment.  The 31st of December was to be “D” day.  The day after International Bacon Day.

With a few large shots of caffeine and an even more significant amount of apprehensiveness, we are as ready as we would ever be to make those final steps into the Cancer Centre.  It seems quieter than usual as we greet and meet with a few pleasantries while simultaneously screaming, “Well, come on, tell us, for goodness sake”.

I jest, of course, as I don’t want to hear what she has to say.

Yes, I do.

What did she say?

No, I don’t want to know!

In my mind, my hands are covering my ears.

She quietly spoke about the test results; now it’s a reality.

Please, can you write it down?

It’s name is Myelofibrosis is an uncommon type of bone marrow cancer that disrupts your body’s normal production of blood cells. Myelofibrosis causes extensive scarring in your bone marrow, leading to severe anemia that causes weakness and fatigue. It is very rare.  We don’t do things by half-measures.

Is it now time to write up that  FU*KitLIST.?

POOH QUOTE

Maybe it’s time to reflect as reality slowly penetrates our fog-filled minds.  Time will tell.

The days have muddled all together. I had to know what day it was!  So, what have our days been like since we returned to New Zealand and before the diagnosis?

Most days, the Squire looks like any regular guy. It looks like we are living in La Vida Loca in the laidback Bay of Plenty and are in good health. Like everything on social media, we all share our highlight reel, right?

The truth is, behind the scenes, it is so much harder than that.

I ask a million times, “Are you OK?”

It used to be, “Of course, just the usual back pain.”  Now, that conversation is extended to more areas of his body.  What can it be?  Could it be? I can’t fix it. I struggle to WRITE those words.  I have no right words.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
There will be more days when we bury our heads in the sand and pretend it isn’t there.

If we can’t physically see it.  It won’t hurt us. ‘Build that Bridge’ is our attitude.  Inside, I quietly cry because I’m scared.  Right to the core. I don’t always feel strong; writing this has made me realise that today is one of those days, or I should say early morning.  The time, to be precise, is 4 a.m., and who needs sleep.  This is my truth.  My reality.⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀
Okay, this just got way too serious and sad.

I don’t usually write about life being too serious and sad.  That’s reality and life for too many.  This blog will still be about us, walks, warts and all.  Perhaps not travel for a while yet.  Too soon to sort that one out, and too much else to organise.  I shall write more about New Zealand and our neighbourhood, including dust-covered posts from previous years and highlights that I still haven’t completed.

We won’t make cancer our story.  

It isn’t our story.  

It is just there.  

Now we need to write up that F*UKetLIST.

Where to start?

More sunrises.  Break more rules.  Don’t put off doing things.  More sunsets. More icecreams.  

Me and Les eating ice creams

Published by Suzanne

Travel and Life Musings from New Zealand and Beyond. . . . . . .

97 thoughts on “Hello, 2019 – We CANcer vive!”

    1. Thank you very much. Yep I hope I never lose it. Scream and laughter is good fun 🙂 Just have to get the timing right regarding the scream!!

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  2. Oh wow Sue!
    I’m so sorry you’ve had such a rough festive period.
    Keep strong. The Squire needs you and we do too. No chance of you being taken off my bloggers list.
    Here’s wishing you a 2019 with solutions, answers and health.
    Luck and love 💜

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    1. Thanks Ritu and for your blogging support and thoughts. Yep, we will be strong and I have a great friend who is on the side to kick me in the arse when I feel too sorry for myself.

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  3. Suzanne I am so very sorry to read this. I don’t have wise words, and maybe now’s Not the time for them anyway. I am thinking of you and the Squire and hoping that you find the sources of strength and comfort you will need. Kia Kaha. Nga mini Nui.

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    1. Your words are always wonderful to receive Su and your sense of humour. Keep making comments I really appreciate them. Kei te pai e hoa ma

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  4. Well I needed to see this today. We got our news yesterday. My husband has malignant neoplasm of the connective and soft tissues of his left leg and hip. We are just beginning this journey and are still in the staring at the wall and wanting to throw things. Lots of crying. It is also rare in a 39 year old man, so now we are calling December the second November. You are so right, our feelings are all over the map and I don’t know what to do. I hope you will keep sharing this journey. Thank you for this today.

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    1. I am really sorry to hear of your journey down this very challenging route. We can not believe how many people even in our small area that are affected by cancer. Scary stuff. Kia Kaha [stay strong]

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  5. What bl**dy awful news! I won’t be striking you off any of my lists.

    Writing is cathartic – it’s crucial to get things off your chest and out there, regardless of the audience. I’ve found writing to myself is also a trick for getting through hard times.

    A positive outlook, which I’m sure you both have is extremely important. You need to focus on the importance of each day regardless of what you’re doing – sometimes even trivial things become a pleasure if it’s with the one you love. It may not be flitting around the world, but walks, ice creams, and watching sunrises sound wonderful to me…

    As for a f*cket list, think I’ve been mentally writing one of those all of my life! 🙂 xx

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    1. Yep its crap news !! Writing is definitely cathartic for me, though at 4am getting the correct grammar going is painful 🙂 We will take each day as it comes and hopefully have more sunny than rainy days ahead.
      Thanks for being a good bloggy friend Nilla, you lot have been a lifesaver while travelling and even at home XX

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  6. Well what do I say? Of course I send all my love and best wishes to Les to be as comfortable as he can and knowing he has so much love embracing him. My every day thoughts are with you both my loving niece.
    Aunt Jan xx

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    1. Oh Jan, thanks you made me cry and smile at the same time. Thank you very much and I hope you know how much we love you too. Much love from the both of us XX

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  7. Oh Suz, your pain and worry and sadness is palpable through your words. I really feel for you both and wish there was something I could say to help you. You can rant and rave as much as you like on your blog or send me nesssges, I will always listen. Best wishes for what’s ahead of you. You are together and positive so that’s a great start. Take care xx

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    1. Thanks Deb, as I have said before your blogging friendship is important and getting things down by writing seems so much easier than talking. Because I am angry and totally pissed off that this has happened to someone I love. Yep, life is like that. The journey was never meant to be easy, how boring it would be. No fodder for bloggers LOL Thanks again Deb for your kind words here and the other messages XX

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  8. Hi Suzanne, thank you for sharing the news of this latest chapter in your combined lives together. As you have pointed out, the pressure is, especially at this time of year, to present cheery faces via the many avenues offered on social media. I think there are many of us out here who like to see ‘warts and all’ as more often than not, this is the more truthful experience of most of us. My blog started out as purely to do with living sustainably and ended up being about living with my husband’s diagnosis with multiple myeloma. We did not let the diagnosis take over our lives, that’s for sure! You and the squire have a great attitude and I definitely like your f*uketlist!

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  9. I’m very sorry for your bad news. It really, really sucks.

    Now, a story, not a hopeful story, exactly, but maybe a useful one. Years ago, just when he had finally gotten the life he wanted — a house of his own in a nice suburb of Zürich, a thriving business, all that (a lot for a southern Italian post-WW II semi-literate refugee to Zürich, pretty fucking amazing, actually), my former father-in-law and dear friend was diagnosed with non-Hodgkins Lymphoma. No hope, Two years to live.

    The guy was a typical southern Italian, lots of temper, all that. At one point, he came to visit his son and me in California. I had a golden retriever named Kelly. Every day when I was at work and my ex was at school, my father-in-law wandered around our (nearly a slum) neighborhood with my dog, talking (in Italian) to everyone he met. He discovered he loved walking a dog. He went home and within two days, got a beautiful golden retriever and named her Daisy.

    Every day he and Daisy walked in the forest near their house. Daisy went to work with him. They were always together. Pietro lived 5 years, not 2. He told me that they were the happiest years of his life. He stopped being a typical southern Italian and calmed down and savored his existence and learned to love each moment of his life.

    Happiness and peace in his life turned out to be the gift that hopeless cancer gave my friend.

    My point is that what is ahead is far from certain. The road is not only paved with cancer but with discoveries that might turn out to be beautiful.

    Still, I’m very sorry that you and The Squire have to confront this news. It’s very hard. ❤

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  10. My dear Suzanne, I am so sorry to hear about the Squire’s news but although I don’t know you well you always seem to be a strong person. I like that you aren’t making the big ‘C’ your story but rather getting on and making sure that damn F*UKetLIST happen. I had a health scare just before Christmas which brought this fit and fabulous person back to earth for a while. I am okay but I can certainly understand the feelings of wanting or not wanting to know. Words are never enough so I won’t dwell on the bad news but rather send you both my love and best wishes and know that you aren’t alone. Love to you and the Squire and if your list happens to include the GC or Brisbane let me know as I would love to catch up with you both. xxxx P.S. No one would delete your from their blogging list and I’m sure there are plenty of your blogging friends here when you need us to vent or just feel comfort. xx

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    1. Thanks very much Sue and I do appreciate yours and my other blogging friends support as I do get lots of great therapy via writing. Unfortunately, the cancer is very rare and not easily able to be treated. Time will tell. Thanks again for the offer of a meet up, that would be fun x

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  12. My heart is with you right now x you and your squire. I have no words except your own
    Keep eating icecream. Look at the sun. See what you can and keep being you guys whose blog we all adore x
    Your post written in the most poignant manner. It tells us everything x
    Love xxx

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    1. Thanks Orla, your message made me smile and eating more ice cream, not much encouragement is needed in that department 🙂 I always appreciate your welcome comments. I love that there are so many supportive bloggers in our group. XX

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  15. I’m sorry to read this, Suzanne. Feel free to express your feelings and emotions on your blog or send me messages. I wish you and the Squire the best in the new year. I’m thinking of you both.

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  19. Hi Suzanne.I don’t know you well enough to offer any words of advice and I suspect you wouldn’t want them anyway. I am a fairly recent follower of your adventures and I am so sorry to hear this horrid news. Life does have a way of kicking us occasionally and it is always harder I think when it happens to someone close to us, than to ourselves. You seem a pretty strong couple and you will battle through this together. And yes, scream all you want and need. We are listening.
    Jude xx

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    1. Thanks very much Jude and being part of my blogging community. It’s been known for me not to listen to advice from people I’ve known all my life, I can be very stubborn and very independent 😊😊
      We are strong and will get through this and there are so many couples/families being affected by cancer it is truly very sad and horrifying. Big question is WHY?

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  20. Oh Suzanne, I am so sorry. I had to read your post twice to make sense of it all. What jumped out the second time was “We are a team” and “We are strong”. Both great assets which I hope you can hold on to. Then I read all the lovely comments with so much affection coming through, which I echo. Isn’t it amazing how we all come to care so much about people we’ve never met outside the internet? Blogging is truly a wonderful, supportive community. It doesn’t look as if anyone is going to delete your blog, perish the thought, we will all be here giving you the best encouragement we can. Look after that Squire of yours and don’t forget to look after yourself too!

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    1. Thanks Anabel and I’m happy that you are part of my blogging community. Not sure about you having to read it twice to make sense of it 😊 Our blogging world is a wonderful place full of people who are very supportive. Though we have met a few and hopefully met more as time goes by.
      We are a strong team and with our family, friends and my blogging community we will be very supported. There are so many people being affected by cancer and very sad to see the cancer centre so busy!!

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  21. Jesus Suzanne, I am so pissed that this has touched your lives. Im saying it anyway – though it’s a no brainer, I hope that the prognosis improves, that your Squire responds to treatment and that you grab the suitcase handles of your usual lives again. Wish I could give you a hug!

    I don’t know what a random blogger you have never met, on the other side of the world can do to help, but if there is anything – shout.

    Sending you love and positive thoughts xxxxx

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    1. Thanks very much random blogger aka Sonia 😆 My blogging community are a special part of my life as well of course family and friends. So, I appreciate your lovely comment Sonia. Writing your blog posts is a big help as I love reading them! One day and one icecream at a time 😊 xx

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  22. I’m so sorry to read this, Suzanne. Really. I have tears in my eyes. Because of what is happening in your life right now, because you expressed your feelings and situation so well in words, because… I understand. It is exactly what Mark and I went through when he was diagnosed with cancer – an extremely rare one as well – in 2014. He was 43. Too young. Disbelief, denial, anger, frustration. The world collapses. Everything is blurry. The future is no more. Time stands still.

    All I can tell you is to take it one day at a time. First step is the diagnosis. The right one. Second step is finding a remedy, cure, treatment. Once there is a plan, there is a purpose. He needs support, love, your presence, the chance to talk whenever, wherever.

    The role and feelings of a care giver are often forgotten. This is a tough time for both of you. You will get through this. One step at a time. He needs to get better. The rest doesn’t matter. In the meantime, comfort, a short walk, a beautiful sunset, being surrounded by loved ones, friends, family, caring people helps.

    Wishing you smiles and small improvements. A little bit every day. I understand.

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    1. Now I am the one with tears. Thank you so much for sharing your story Liesbet, it was very reassuring. I have always valued your comments, so again thank you. Too many people are being affected by cancer, it is very scary and very sad. Though with each sad part there is always a happy one, as in hearing about the successful ones that beat cancer. It is like many things in life it needs to be acknowledged and talked about when needed and not to be an “elephant in the room” situation. We do have wonderful people around us that also understand and are still going through it. Yes, once there is plan there is a purpose, love that and it is so true. The hard bit is adjusting to having no plans or the ability to not plan. One day or ice-cream at a time 🙂
      Wishing you both the same, and thank you again Liesbet.

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  23. Thanks for your honesty – it’s tough to hear that you both are being faced with this. Please keep writing and sharing so we can support you with our thoughts and prayers. And enjoy the ice-creams and the coffee and the sunrises each day!

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    1. Thanks very much for your lovely comment and I’ve enjoyed reading your experience through Spain. A country we have spent months in over the last 4 years. Taking of coffee 😊 We may meet up when you get back to NZ.

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  24. Suzanne, so sorry to hear about this terrible news. Sending you lots of love. My dad had cancer back when I was in school and it was scary to see a parent go through that and to now live a life forever in ‘recovery’. Looking forward to hearing more about your list and future posts! x

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    1. Thanks very much, Celia. Both of us have had family members go through cancer. I’m glad your Dad conquered it. Not easy!! That’s life and when has life always been easy!! How boring would that be 😊 I look forward to yours about life in Japan! X

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  26. Kia Kaha, my friend! I’m so very, very sorry to hear this terrible news. And never think you should be cheery and upbeat on your blog if you don’t feel like it – your blog is part of who you are and there’s no need to hide the sometimes ugly face of truth before your friends here. In fact I encourage you to use it as an outlet of sorts, as I know that writing helps, and sharing even more. Sending you big hugs, Suzanne! ❤

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    1. Oh thanks very much Sarah, your comment is much appreciated. Yes, it is our reality now, no getting rid of it, it is here to stay. Definitely into talking about cancer and it’s affects on people and us. It just won’t be our focus or a focus on my blog. We need to stay positive and enjoy what time we have together. As we have always done and which we all should not take time for granted. It is easy to do.

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      1. Yes, that´s true, we are all prone to take most things in life for granted which we should not. Staying positive requires a lot of strength sometimes but it´s well worth it.

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        1. Sarah, you are right staying positive does take a lot strength. Well worth it as being negative is so draining. Though being positive is not always possible.

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  30. So so sorry to read this dreadful news ! OK, I won’t say “Be strong both of you” – because of course you will. I won’t say “Fight this shitty disease” because of course you will. I won’t say “Keep going, hand-in-hand” because of course you will.
    But what I will say is – “Tell all your fears to the sky, loudly, in a scream if necessary”. I had some really bad news a few years ago and instead of bottling up the words, the sky was my listening ear. You had to vocalise this, bring it out into the open, just to hear the words you thought could never be said – and I promise you, it will help (a little) in the long days, weeks ahead.
    My love and thoughts will be with you both also xx

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    1. Thanks very much for your lovely thoughts which made me smile. My walks help with the frustration and sadness as does the support from family, friends and my blogging friends x

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  31. I saw the very sad news of the dreaded C diagnosis last week while I was traveling. You have both been on my mind ever since. This is a beautiful, heart felt blog post and it touches my heart. You and the Squire have inspired many people, including myself, to live life with gusto. The older we get the more it hits us to do it NOW, don’t wait because health is never guaranteed. I have no doubt you will both continue to live with gusto but perhaps at a gentler, deeper pace for the time being. Keep the strength, comfort and love from people all over the world close to your hearts! Hugs – Yvette

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    1. Oh thanks Yvette, so much for writing what you did. It made us smile and tear up at the same time. You are another much admired traveler. Hugs from us both X

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  32. Well you two don’t do things by half but you do tackle things head on. And writing your feelings even in the wee small hours will keep you both strong for the 2019 challenge of ticking off your F*UKetLIST starting with that yummy Kiwi ice-cream. Sending our love to you.

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  33. Only just read this. So very sorry to hear this. What awful news to hear at any time, especially Christmas.

    Your strength and resolve do you both credit. Breakthroughs are happening every day in this field. Stay strong and positive. You are right. Cancer doesn’t have to be your story. Take care of each other x

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    1. Thanks George and you are right on all counts. It’s just another part of the journey and won’t be as pretty as the travel segment. Though I will think of other things to write about as we deal with it. Keeps me more positive engaging in other topics with you all on my blog. We shall never lose our sense of humour, well maybe I should say most days 😊

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  34. This is the second time I’ve read this, Suzanne. I was travelling the first time I read it and Jon had asked me why I was so quiet. You are such a good writer and describe the pain and frustration you are going through with humour and honesty. You are one of those bloggers I call a friend Suzanne, and I do hope we get the chance to meet up again. You know I wish you and the Squire all the best wishes and positive vibes in the world. xxx

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    1. Oh thanks very much Sam, smiling and tearing up at the same time 😘 I hope you realise you make a difference with your support my penpal 😊. Yes, I hope we do get to meet again. Not all my friends can be here with us as they are spread all over the countryside so keeping in contact long distance can’t be helped. Received the lovely package of positive vibes and good wishes. Thanks again Sam Xx PS looking forward to seeing the ski photos soon 😀

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  36. I am so sorry about your husband and I know exactly where you are coming from. I cried as I read your words, those 4am wake ups are killers. I have cried and screamed and pounded things but the fact is my husband has bad cancer also. It will be a year for us next month and I am discussing our journey on my blog.

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    1. Thanks very much for your welcome comment. Unfortunately, it went into my spam folder which I had not checked for a while.

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  37. Wow. I was reading your post about turning 60 then I saw this link. I send warm and caring greetings and well-wishes to you both across the Tasman. Receiving news like that takes us down so many different paths of thinking…as a carer and a patient.

    I was given that new in May 2017 and continue to do well after multiple surgeries and treatments of oral cancer. My husband is an amazing carer because he is not like me. I would be not so good. He is measured and calm and very helpful and supportive. I would be that without the calm.

    You do all you can to help but also remember you, the carer needs respite and times out of the C-word zone.

    Denyse #mlstl

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    1. Thanks very much, Denyse for your comment and your openness about your condition. Life certainly has a way of blowing the wind out of our sails. I am pleased to hear your husband is a great carer and I wish you both all the best in your journey. It is so sad to hear so many people being affected by cancer. Kia Kaha.

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  38. My heart hurts for you, hon, and I’m so sorry it’s taken until now for me to read this. I had registered some change, in my cloud cuckoo land fashion, but hadn’t realised the gravity of the situation. Everyone’s worst nightmare. Many make it through. More and more over time, but nobody wants to go there. Just last week a walking friend had the heartache of losing a daughter after a 5 year battle. We all hope it won’t touch us. Sunsets, icecreams, shared music… I wish you all the strength in the world, Suzanne.

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    1. Firstly Jo, many apologies for the late reply. New blog more posts going into the spam folder. Very annoying. What heartache for your friend. Yes, there is no cure for the Squire and we will make the most of his time, and hopefully many more sunsets and ice creams 🙂 Funnily enough weight concerns are no longer an issue for him, so for once he is enjoying small amounts of the naughty foods 🙂 Yes, we still have our sense of humour. I love that we can take about his cancer and it is not the elephant in the room. Some days are better than others!!

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  40. Oh, Suzanne, I’m so sorry and I’m sending a loving (virtual) hug to both of you. You and the Squire were in no small part the inspiration for my husband and me to move from Connecticut to Florida. Your willingness to try new things and get out into the world will always be an inspiration. Take the time to enjoy each others’ company and it’s obvious from all these comments that so many people around the world are also sending you loving hugs and support.

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    1. Thanks very much Jennifer. I do feel honoured that you were inspired by us. It’s really an honour to have so many wonderful people in our lives, via my blog, housesitting and of course those here in NZ Thanks again Jennifer and all the very best for a wonderful fun life down in Florida.

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