Cancer Sucks, Life at No.22, Musings

The View from my Window

Suzanne

Since the breaking story of Les’s transplant failing, we have been reminded on this journey of how much support we have for which we are grateful. To put it bluntly, it’s also been an extremely weird time. Some days, we function on auto-pilot and others, grabbing life by the proverbial balls.

Les has been told what to do and, more importantly, what not to do, like knocking the controls with his knees.

Living with a partner who has a diagnosis of cancer is complex, and the grieving begins early. We all know that someday we will die, though being diagnosed with incurable cancer due to a transplant failure means that person loses the opportunity to live life with the illusion that it won’t happen to them.

Telling people about his diagnosis is challenging, and sometimes I mainly felt disconnected from the conversation, repeating the same dialogue over and over with seemingly emotionless. People want to make everything better for you. Les’s diagnosis makes them fearful, and most people don’t know how to respond. It is not uncommon to be met with, “Well, we are all going to die someday!” or “He could step outside and be run over by a bus; you just never know”; just a gentle suggestion: don’t say comments like that to people with terminal cancer, it’s annoying to say the least.

But having cancer doesn’t stop you from being run over by a bus.

Our lives changed in a fundamental way when Les was told his transplant had failed, his cancer had returned with vigour, and there was no other alternative for him. It is difficult to explain what changes without using words like “existential” or words that begin with “F”. Our faith in the future was immediately compromised. It’s like he’s walking on quicksand on a beach – one step or move in the wrong direction, and he will sink. Everyone else, like me, is walking on the same beach with no knowledge of the potential danger or threat surrounding them.

I have been thinking of different metaphors or analogies to help people understand. Then, over an early morning coffee, I came across an article about being on a train ride and that cancer is the ticket.

Les with our nephew on a vintage train ride – Auckland 2008

When Les was diagnosed with Primary Myelofibrosis on New Year’s Eve, 2018, he was given a ticket for the Cancer Express. He wasn’t asked if he wanted to take the trip, but once he was given the ticket, he boarded the train – no excuses or rain checks. Then, this month, when we were told his 2021 stem cell transplant had failed with no second transplant to be given, his ticket was double-stamped, and his continued presence on the train ride was required.

Since 2019, he has lived on that train in his small carriage. It has been comfortable at times and a crazy careening caboose at others. The landscape he has travelled through has been amazingly scenic. He has had some fun times. Sometimes, the carriage seemed utterly transparent, so we forgot he was on the train. Sometimes, the train enters long, dark tunnels with no idea when it will come out or even if it will.

Switzerland to Italy – 2015 – I had hopped out to capture this stop. Returned just in time.

He boards the train with as much luggage as he chooses to bring, but it can only be stored in his carriage: clothes, books, music, food, fear, sadness, and uncertainty. You can stop off and pick up things you feel you are missing. Sometimes, visitors just drop their baggage off in his carriage without asking. As time passes, the baggage can become heavier or lighter depending on how much space you have and how easily you can offload excess baggage. The only excess baggage fee that applies is how well he can keep everything together.

A diagnosis of now incurable bone marrow cancer meant he was awarded special status on the train, a limited-season ticket all the way to the destination, with the duration uncertain. When people like Les disappear from the train, it is because they have reached their destination.

Us – 2017 – so many train trips back in the housesitting and travelling years.

Whānau (family) and friends can visit Les on the train. As time passes, when the time is nearer to the end, the train may slow down so they can sit with him for a few hours, but all visitors and I must disembark at the end of the day. No overnight stays. The overnight train accommodation is for bona fide ticket holders only. And honestly, visitors do not want to join you for the whole package. They are happy to get off the train at the same place they got on, irrespective of how far you have travelled together. It is lonely on the train when they leave. 

There is no timetable. The train travels at its own speed, on its own route.
We are all headed to the same destination, which needs to be clearly stated on the ticket. What awaits you will depend on your belief system. Having the ticket with his name on it and sitting on the train has forced him to move from living life in the uncertain certainty of his death to the sure certainty of it and losing the illusion of immortality.

Sometimes, he feels hopeless but never loses hope and, at the moment, is living life to the fullest extent. For example, he has wanted to take a flight in a glider for a while.

Now, that was magic.

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Published by Suzanne

I'm a lover of creativity and movement, expressed through photography, words, travel and sports. . . . . . .

43 thoughts on “The View from my Window”

    1. Martha, thanks for sharing about your Dad’s journey. No matter what the disease is nothing ever prepares you for the ongoing fight. The hardest thing for me when entering the Cancer Centre now is seeing other couples starting the journey we did years ago. The positive was the gliding. Anything that takes our minds off this journey is wonderful. Thanks, Martha.

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  2. Suzanne, you’ve expressed it so vividly. You could rant and rave at the injustice of it all but that won’t change a thing. I’ve admired your attitude from the very start, and I’m sure you’ll give Les every opportunity that he’s able to enjoy in the coming months. So sorry that it’s gone this way. I hope we’ll be here for you when you need us. Sending hugs to you both.

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    1. Thanks very much, Jo. Like you say, what is the point of jumping up and down moaning “Why us?” when it happens to so many and it’s something we have no control over. Though we have control on accepting what’s to come and be at peace with it. No matter what the age it’s still impacts a person’s life. Reading your adventures makes me smile and connecting via our enjoyment of blogging is always a positive thing.
      Sending a hug to you, too.

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    1. Mel, thanks for the hugs and sending one back. We tried to get a refund and the buggers wouldn’t accept it 😉 To think we used to enjoy train journeys. Actually, we still do, just not this one.

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  5. it’s a tough one…I’ve done the ride to conquer cancers and run for the cure and am always asked why?…and at times it’s in memory of someone, sometimes it’s been to maybe give someone I knew/know something positive…then I remember a friend, a really amazing special someone…the second time I saw her, she was okay, in remission, but we huged, and she was more interested in talking about me, for her what she was going through, was just a part of her life, but not all of it….the final time she couldn’t really see or even stand, but she came with her husband to see us at the halfway point on a ride….we hugged, she wouldn’t let me cry, she could whisper, and we just talked….the elephant was in the room, but she wouldn’t let it define our friendship….we are all different, and will all approach this differintly, there is no right or wrong..it just is…..the last words we had was the night before I took part in my second Ironman, she was more concerned with giving me that final cheer than anything else….she passed hours later, and yes I cried throughout that race……but, commited, she was in my heart and my head and got me to that finish line……..I think all we can do, is what they want us to….

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    1. Thanks for wonderful inspiring comment. Good on you for taking on those challenges as I am sure many cancer survivors would appreciate the fundraising. Yes, anything to get over that finish line 🙂

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  7. First of all, well done Les! I could never be brave enough to go up in a glider like that. I’d be sure to do the things they told me I shouldn’t.

    Your train metaphor is a good way of explaining things in a sensible and moving* way to those who have not been through what you are going through. I can only add to others’ good wishes that the rest of the journey will be reasonably comfortable. The blogging community, as you say, is supportive but also instructive. I learn a lot from people like you, Jude, and Becky about handling adversity.

    There is an interesting public art work in Glasgow at the moment which is raising awareness of cancers which sound similar to what Les has, and what symptoms to look out for. Can only be a good thing to increase knowledge in quite a fun way – it’s in my next gallivanting post.

    *Oops, just reread before pressing send and see I have made an unintentional pun.

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    1. Thanks very much, Anabel. You’re right in that we all do learn so much from our blogging community especially in how we deal with life’s challenges. Different from talking with family and friends. Blogging has certainly been a positive experience for me. Didn’t he do well and enjoyed doing something new. Look forward to reading your post regarding the awareness of blood cancers. September is Blood Cancer awareness month in NZ.
      Funny pun 🙂

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  8. A ticket none of us wants to be given, but they never seem to be in short supply. I can only hope Les is in first class and his journey is as comfortable as possible. No one can really know how it feels for him, but I feel sure that you will be there, by his side, doing what you can, easing the way, just getting on with things. It’s what we do, isn’t it?

    My love to you both, and take time to take care of yourself Suzanne. This train ride will take its toll on both of you. Rant, cry, swear, scream all you like. We’ll be here when you need us.
    Jude xx

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    1. Thanks very much, Jude. Sometimes, I do find it hard writing about Les’s health as he has a completely different viewpoint from the place I am writing from. Luckily, we are usually both on the same “page” when it comes to most things. Just getting on with things is exactly all we can do. You can fight it for so long, but there comes a time when acceptance is the healthiest way to go.
      I love the positive distraction from blogging and when I’m playing basketball with a coffee and chat afterwards.
      I am very fortunate to know many strong women with who I continually gain strength and knowledge.

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  9. Your train ride analogy is very vivid. No one wants to board that train, but if you have to, all you can do is accept it with the grace that Les and you are demonstrating. I’m glad he got to experience that glider flight and I hope there will be similar brighter moments in what is bound to be a very challenging time for you both, in different ways. Sending hugs.

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    1. Thanks very much, Sarah and I appreciate the hugs and returning one. I think it’s having gratitude for the time and adventures we were fortunate to have together. One day at a time instead of planning too far ahead is something new. Thank goodness we are both flexible enough to accept change.

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  10. Thinking of you and Les on this journey Suzanne. I’m sure you are making memories together (I imagine the silence and peace of a glider!) and finding joy and strength in each others company that will sustain and be a comfort to you both in the uncertain days and months that lie ahead.

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  11. So sorry to read the news about Les, Suzanne. My sister has lived with a blood cancer train ticket for the past six years. She’s currently in Bali celebrating with some close friends who invited her. I think she’s making the most of the view from her window. Good on Les for getting in that glider. Making the most of every day. Such a heartfelt and poignant read. Sending you both lots of love. 🙏❤️

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    1. Thanks, Miriam. Good on your sister, Miriam, for enjoying every moment she can. Les’s is a bone marrow cancer and rare. His oncologist specialist has only seen 11 cases in his career, who is nearly at the retirement stage. Unfortunately Les can’t travel, though we don’t have any desire to travel. More invested in spending time with life here. Take care, and all the best for your sister’s ongoing battle.

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  14. Ah, Suzanne, you mentioned this train ride on a post and I was pretty sure what I’d find when I popped over. I’m so sorry that Les (and you) have become so intimate with this particular train. It’s hard and heartbreaking, but also a place to tap into profound love and gratefulness, which I hope you and Les are experiencing in the softer moments. I’m glad he got on that glider too! Wishing you both a graceful journey. ❤ ❤

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    1. Thanks, Diana for the good wishes. In many ways we have been very fortunate in our time together and we are forever grateful for that. I should have referred to the cancer journey as a rollercoaster ride than a train. A bit of both I suppose. Les is an amazing gentle soul so yes I will be forever strong for him whenever I need to be.

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