Cancer Sucks, Life at No.22, Musings

The Cancer Journey continues

Suzanne

Looking out the window from Ward Rangitoto, there are amazing expansive views over the Auckland harbour and beyond. Like us, people are waiting and hoping for more than a view when they see the specialist.

It’s now our turn.

That moment you hear what you don’t want to hear, as in “You don’t have years to go”, and with it, a new journey in the form of a bone marrow transplant (stem cell transplant is another terminology) begins.

It is early days with ongoing tests and a search for a suitable donor. Here is a short version from the moment our lives together changed, lessons to be learnt and personal growth to be had.

It was the 31 December, 2018, when the Oncologist confirmed his diagnosis of having Primary Myelofibrosis (a rare bone marrow cancer).

During 2019, it was early days, and hope was in the form of a drug that would lessen his symptoms as we knew it wasn’t a cure as there isn’t yet a drug available to erase this horrendous cancer. We kept our minds focused on a future together and even managed a few trips away.

At the start of 2020 came our acknowledgement that cancer was slowly wearing him down with more hours of sleep needed; knowing that Chemo brain is a “thing”, continued weight loss, bone pain and spleen growth and the realisation that his drugs weren’t working as efficiently as they should. A change of drugs was needed. Ruxolitinib was his last drug option.

By early 2021, it was pretty evident that Ruxolitinib wasn’t working as well as we hoped. Tiredness and a sense of helplessness was a continuous albatross around his neck, trying ever so hard to drag him down. Most days, it seemed to win, and on others, he grabbed it by the balls and said, “Fu*k off,” and he achieved more on those days, and it was so good to see his spirits soar and experience the demise of that albatross.

“I won’t go a day without a smile and laughter on my lips, in between the moments of sheer anguish”

While we navigate ourselves through this, I will be erratic with blog posts and catching up with yours. However, I will try and share snippets and a dash of cancer humour from my perspective of of being a carer and supporter with the hope that it helps someone stay reasonably sane and positive on days when “hell” must surely be more pleasurable than their current reality. Not all future blog posts will be about our upcoming journey as in life there needs to be some light relief!

Thank you to all those special people who are supporting us through various ways. Just to let you know we appreciate it beyond words.

With a big dose of optimism we are hoping for a fairy tale ending.

Published by Suzanne

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

50 thoughts on “The Cancer Journey continues”

  2. My deepest admiration for the strength you are showing in this painful journey. May you have a lot of days where the albatross is lighter.

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  3. Oh Suzanne, I am so sorry to read about this news. I wasn’t aware of your husband’s very serious illness till this post. You are both in my thoughts and sending all I can in terms of hope, strength and love across the Tasman.

    Denyse

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    1. Thanks very much, Denyse. I don’t mention it that often which is why you didn’t know about it. There are many folk that we have met through travelling and blogging that I wanted to let them know how things were going with Les.

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  4. Hard to think of what to say to news like that. Hard to watch someone you love battle and be in pain. Hard to be upbeat all the time, but I am sure you do your best. It sucks. And there will be more tears and more laughter and more shared memories to make. Be kind to one another. Be kind to yourself. And yes, fingers crossed xx

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    1. Yes, I agree not easy to find the words and it was certainly not easy to push the publish button. Just taking one day at a time Jude. Keeping ourselves calm and distracted is our way of doing it. For me, it’s keeping a count of my steps and pushing that number up 🙂 Thanks for your thoughts, always appreciated xx

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      1. I don’t think any of us know how we will cope with this kind of stress in our lives. You are doing just fine Suzanne and I think expressing yourself like this is very brave.

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        1. Yes, not sure how things will go. Once all the tests are completed with donor and Les is completed we then head up to Auckland for three months. One month in hospital for Les then two months of observation and hospital visits. I think I am doing ok, today and will gather further strength as time goes on.

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  7. Oh Suzanne, I am so sorry to read that you’ve had such a horrible prognosis. I really hope that a donor can be found soon.

    Please know that I’m thinking of you both and hoping for the best.

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    1. Thanks very much, Su. Your kind thoughts are appreciated. It is a rare cancer and so hard to manage. Our hope is that in future they find a cure for others that may develop Primary Myleofibrosis.

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  8. I know we all kept hoping for some miracle cure – least of all you and Les. I hope that you are able to find a donor soon and it leads to the fairy tale ending you are looking for. In the mean time, stay strong and take good care of yourself. Being a caregiver is just about the toughest job any of us will be called to do.

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    1. Thanks very much, Janis. Caregiving is hard as is watching someone you love succumb to cancer. Heart breaking. I keeping up with my exercise and trying to eat all the right things, though the food treats are so hard to say no too, some days!

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  9. So sorry to hear about your on going struggle with this terrible illness. I do hope a suitable donee can be found soon. The medical profession can certainly perform miracles so I hope they can perform one for you both. What a difficult post for you to write but I’m sure all your followers can now send you their thoughts and best wishes. Stay strong.

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    1. thanks for the best wishes. You’re right in that the medical profession do perform miracles under hard circumstances. I certainly are in awe of those that work in the medical field. We are reasonably realistic in our expectations and just taking one day at a time.

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  11. I’m sorry that the drugs aren’t working out. You’ve both been in my thoughts a lot this past year, so thank you for the update. I hope a donor is found soon and that Les is well enough to undergo the procedure. Best wishes to you both.

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  12. Aww Sue, I’m so sorry to read about Les’ deteriating health. He is so lucky to have you fighting in his corner, I’m sure the sound of your laughter is uplifting for him- I still miss hearing it over the fence! Please pass on our regards to him…

    Sent from Mail for Windows 10

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    1. You’re a gem Chris and yes a big smile (and laughter) when I read your message aloud to Les. Happy memories attached to that time in our lives. Thanks again for your lovely comment x

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  14. I’m so sorry to hear about Les’ deteriorating health Suzanne. My grandmother was diagnosed with leukaemia at the age of sixty and refused chemotherapy and all other conventional treatment. She managed her condition through diet and exercise and lived a good life for another 40 years. Everyone responds differently to disease and I cannot help wondering whether it is the treatment that is making things worse for Les. I hope you will find a way forward and send healing thoughts and love your way 💗

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    1. Thanks for your kind thoughts. Les doesn’t have leukemia he has Primary Myelofibrosis which is a rare bone marrow cancer. Very complicated.
      Great that your grandmother enjoyed a longer life.
      Everyone’s journey is different as are the amount of cancers and how fast growing they become. Funnily enough most people I know who have have cancer lived a healthy lifestyle with a good diet and exercise. Didn’t stop them getting cancer.

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  15. I wish there were ways I could send some physical sense of the love everyone is sending you in the hope that it will help you through this awful experience – both of you in fact. We are all rooting for you and those who pray will pray and those who can just feel an intensity of sympathy will hope the vibes get through. We still live in an age of medical miracles, so keep your hopes high and your powder dry!

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    1. Thanks very much for such an uplifting comment of support. Yes, even with support it is a journey that Les and I will have to power through and hopefully with a positive outcome.

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  16. Suzanne, you both must be feeling gutted at the news. I read recently that donations have slipped over the course of the pandemic. I’m not a suitable candidate for donation but you have reminded me to check with my young men to see whether they would be willing to go on the bone marrow register for donation. Apparently healthy, young men are good candidates.
    I hope you and Les have lots of support around you. Take care.

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    1. Tracy, thanks for your encouraging comment of support. Yes, to more people donating bone marrow. It is incredibly hard for minority groups as cultural beliefs don’t mix very well with medical requirements. It would be harder for people to donate with a pandemic still surging around the world. We are taking one day at a time and hoping for the best.

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  17. Oh dear, I’m so sorry to read this. I can feel your pain through the page but also your strength and determination to be the best carer you can be. I do hope you both get your fairy-tale ending in the shape of a suitable donor. Stay strong meanwhile.

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    1. Thanks Sarah and yes I do put 100 percent into endeavours and this part of our journey will be the same. It was hard to write and I felt it fair to keep folk updated as I started the cancer journey a while ago. Taking one day at a time.

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  18. I’m very sad to read this. I can’t even imagine how sad it was for you to write it. I’m hoping with you that there’s a fairy tale ending for you both.

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  20. So sorry to read this. I can’t imagine how hard it was to write. Sending virtual support from across the ditch and wishes for a fairy tale ending.

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  21. Suzanne, I’m so sorry to hear about Les and his insidious cancer but at the same time, it’s uplifting to read how you’re both saying screw you, we’re still going to enjoy life regardless – hats off.
    Thinking of you both xx

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  22. Pingback: What’s been happening? – April 2021 – Life at No. 22

  23. While I am not religious, miracles do happen. And during these tough times it might seem that hope is all that’s left. So, hope is important, together with staying strong, loving and supporting each other, living day to day, enjoying the small things in life, and kicking that albatross in the butt!

    I still remember that very moment of Mark’s cancer diagnosis. It felt like the world stopped. So many emotions – and stages – to go through and digest. It’s been over two years now for you two and it seems like the toughest parts are still ahead. Thinking about you!

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