On living and dying…

When faced with an incurable cancer diagnosis and the prospect of an early death, unsurprisingly one’s thoughts will veer towards the actualities of dying, but also how to live… how to live well in the time I have. No, this isn’t morbid. At least that’s not how I feel about it nor what I’m intending, but who knows where this will lead. I’m on steroids and not sleeping, so anything’s possible!

I recently returned from a short break in Bruges (I’m not sure why we don’t call it Brugge, given that’s what the people who live there call their city), feeling alive, well and energetic. I wandered the cobbled streets, with so many beautiful old buildings, religious niches, bridges, windmills, swans… and eating anything that stood still long enough. Yes, I have a ravenous appetite – perhaps making up for most of last year when I couldn’t eat much at all, but no actually, it’s the Dex effect! I drank good wine and sweet Belgian fruit beers. I’ve never been a beer drinker, but that stuff was quite deliciously sweet. I ate chocolates, mussels and frites of course, but also oyster, caviar and lobster.

I stayed in a tall-ceilinged, richly-coloured, sumptuous room with a fire, that overlooked a canal – it was rather special and ‘gezellig’ (a Dutch/Flemish word meaning appealingly cosy, warm, inviting). The hotel provided the most amazing breakfast buffet of fresh and dried fruits, cheeses, meats, breads, pancakes, pastries and little chocolates.

I bought two paintings from local artists, a watercolour and one in oils, and a sweet blue and white, hand-painted porcelain teapot; I sent postcards to friends, did some window shopping and took so many photos. I had such a lovely time, just doing what I wanted to do and not worrying about the cost or the future – not my usual style at all. This is living!

   

On the same trip, I also visited my cousin and her family in East Sussex, met up with an old friend in Brighton, who trimmed my hair into a better shape and walked us round the Lanes for present shopping. On the way home, I saw another cousin and his family, and an aunt in London for Sunday lunch. Thank goodness for Dex! And that was on my week off medication! Connecting to family and friends, which I didn’t feel so able to do this time last year, is also about living.

I’m planning a few other trips over the next few months. I was hoping to go to New York this week, but at my consultation at the beginning of cycle 2 of Velcade, I was advised not to fly. Velcade can lower the platelet count and I seem to be particularly prone to it. At the beginning of cycle 2, my platelet count was just on the lower end of being acceptable for treatment. Lowered platelet counts means that my blood doesn’t clot so easily, putting me at risk of a brain haemorrhage in a plane due to the change in cabin pressure.

It would have been nigh impossible to get travel insurance for the New York trip, as although I’m not on chemotherapy, Velcade is a cyto-toxic drug, so is considered akin to chemotherapy, which they won’t insure for – too high a risk of sickness, infection, lowered blood counts, hospitalisation, etc. And that kind of treatment could be very expensive in the States. If it hadn’t been for the flying risk, I might have gone without insurance, as I have been feeling so well and it was only going to be for five days. There are some risks you’re prepared to take and others you’re not… a brain haemorrhage is too great a risk.

It was quite a disappointment for me, even more so for my mum, with whom I was going to travel, and for my brother and his family whom we were going to visit. Ah well, I’ll just have to make sure I recuperate well enough to travel next year. My brother, his wife and son have said they’ll come here to see me instead at some point in the next few months.

In a couple of weeks, I’m going back to Belgium – how odd! I’ll be visiting Brussels to meet up with an amateur European photography group that I’m part of on Facebook. I’m also hoping to see an old friend and maybe even connect with some family on my dad’s side in Antwerp too. I was planning to fly via Amsterdam, but will be going with Eurostar for that trip too now. It’s more expensive, but I don’t want to miss any opportunities that present themselves. If I can’t fly, then I can’t fly, so will have to use other options. Train travel is more environmentally friendly too. Taking up opportunities… and having the (albeit drug-induced) energy to do so is living!

Paris in April is still on the cards, which was always going to be on Eurostar, so no change there. I do like train travel and the idea of arriving abroad by land/sea is very appealing – more real, connected than flying. I guess without other big trips, I can make the Paris trip as luxurious and special as possible. Bring on the champagne! 🙂

After all that, there’s hopefully Amsterdam in early May, maybe a Mediterranean cruise, a car or train trip to Scotland and the West Coast islands, or driving through France to visit friends in Italy, with a bit of a ‘Room with a View’ scenario to Florence, Siena and Venice. I do love that whole Edwardian romanticism… Whether I have the time to fit in all these plans is quite another matter.

There are so many places I can go without flying. In fact I could, if I had the time, even go to New York by ship… now that would be a bit special. I find myself getting very excited about so many possibilities. I want to fulfil as many fantasies before it won’t be possible for a while… or even forever. I suppose it’s a kind of a bucket list, but I really don’t like that expression. I prefer to think of it as how to live, how to enjoy this time of relative health.

I feel so lucky, despite the emotionality, irritability, lack of sleep, jangling and manic wired feelings that I experience on Dexamethasone, that I have so much energy and creativity and feel so excited about what’s possible. I am well-supported financially by the state – getting Disability Living Allowance and Employment & Support Allowance, despite so many people losing benefits and being deemed well enough to work when they’re not. (Please don’t get me started on the outrageous politics being used to make some people’s lives much harder than they are.) I also get some help from my family and I was taught to save for a rainy day… well if now isn’t that rainy day, I don’t know when it will be. So, I have the funds, the energy and the desire – how lucky am I?!

My friend Debbie is a great influence when it comes to planning for adventures, encouraging me to just go for it now while I can. She knows what she’s talking about as she too has a life-shortening health condition and is making the most of her time before she runs out of energy. She’s just been to Mexico, snorkeling with turtles. As she put it “If not now – when? These are the good years…” and she’s right!

Many people on this regime of medication do not react as well as I have. One Myeloma friend who had Velcade prior to the stem cell transplant felt so tired, weak and ill during the week off and even weekends that she had to retreat to bed between treatments and couldn’t imagine doing the trips I’m doing. I almost owe it to those who can’t to engage in life as fully as I can, but I’m not taking that idea too seriously – way too much guilt and pressure!

The truth is that however long I get in remission, it will fail at some point. I will explain about the next line of treatment after Velcade in another post. But for now, it’s enough that I have plans afoot and unlike a few months ago, when the idea of making the most of whatever time I have felt like a huge pressure and made me feel depressed, I now (thanks to Dex!) have the energy, enthusiasm and daring to go for it and live as fully as I can.

Living fully for me is about going with my heart – travelling, being generous with my time, money, energy and love, connecting with friends and family, spending time with people who value me and make me feel loved and alive, volunteering, learning, laughing, dancing, concentrating on breathing and moving correctly in Tai Chi, picking up a camera, needle or paintbrush and getting creative, grabbing opportunities, or just appreciating a sunny day. When I read that list, it sounds to me like what anyone would hope to do with their life with or without the prospect of dying early.

The dying bit is a little harder. To be honest, right now I feel so buoyant from the Dex, that I don’t think about it very much. Maybe I’m in partial denial, but I am aware of it hovering in the background, colouring my experience, influencing everything I do and the choices I make. The thought of dying gives me such a strong push to live as fully, openly and as honestly as possible. There’s a subtle balance at play too that I get a real kick from – who needs drugs? Or maybe it’s all down to the drugs? It’s hard to describe and maybe hard to believe if you’re not in my position.

There’s a lot more I’d like to say about this two-sided coin, but I can’t quite find the right words just now. I feel frustrated at not being able to express my thoughts and feelings clearly, but I’m going to post this as it stands for now and come back to it at a later point.

In the meantime, I’ve started a second participatory blog: Living with Questions and hope that you’ll join in by responding.

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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10 Responses to On living and dying…

  1. I liked your photos and yes, it is about LIVING and if your health allows you to explore, then all power to you and blessings aplenty on your journeys!

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  2. Meg Williams says:

    Wow! That’s so life affirming and positive : ) I’m having a bit of an issue with this living/dying thing at the moment and this has helped hugely. Unfortunately most of my ‘savings for a rainy day’ are in property so it’s going to be a couple of years before pensions etc, kick in and provide the additional funds I plan to use to do exactly what you are doing now! There are so many places I want to see and by hook or by crook I’m determined to get there. X

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  3. So glad you are feeling the power of now and trying to be in the moment as much as possible, I am impressed by your energy for living (even if it is dex fuelled), keep it going my myeloma friend!

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  4. Paul Creek says:

    Hi Jet
    Its all about living the now which you are doing its great to read about your plans,we love Paris you will have a lovely time we have family there.The west coast of Scotland is fantastic and will really open those creative thoughts! we also go very often visiting many islands and remote crofting areas and enjoying local food.
    And it brought a smile to me thinking about the the positive side to the Dex effect…eating the foods great!
    love the positive blog
    Outdoors Paul

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  5. Hi Jet,
    What an inspiring message! It sounds like you had the most wonderful time and made the most of it. It appears you have some wonderful adventures planned in the future, too. Living each day to the fullest takes on a whole new meaning for us myeloma patients.

    Dex can do amazing things besides fight myeloma. When I was first on it, I came up with a complete redesign of our master bedroom in one night. I got up the next morning wrote out all the details and a few months later we made it happen. I had been trying for months to come up with a design, but all I was sure of was plantation shutters on the bay window. My visions were so vivid from the night of “Dex” creativity, that the finished room looks almost exactly they way I saw it that night.

    Take care my dear….
    Love,
    Carole Leigh
    caroleleighi.blogspot.com

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  6. Mavis says:

    Hi Jet
    I think you have such a gift with the written word – even if you put it down to Dex.

    I identify though, with wanting to put into words the two edged sword of knowing death is in the wingds, though hopefully with a long wait, but then also wanting to live life to the full in spite of the limitations of MM.

    I have joined your new Blog I do hope it stimulates some interesting discusions.

    Keep travelling! Do it for those of us who can’t at the moment. We will enjoy hearing about your trips and seeing photos!

    Love

    Mavis

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  7. Alona says:

    I am so pleased you are feeling the dex effect! Its lovely to hear about your travels. I hope you keep well and continue to get a buzz from travelling, taking photos and meeting up with friends and family. At last you can do all the things you couldn’t do whilst working full-time and when holidays have to be booked weeks in advance

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  8. evelynsilver says:

    Jet, this is amazing writing, thank you so much for letting me into everything going on with you. It was great to see you at the MWR gig, you looked really good!
    love ev x

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  9. Claire Nance says:

    Thank you again Jet for sharing your adventures, thoughts and feelings.
    Glad that you are getting to enjoy and do so many wonderful things, it is very inspiring.
    That breakfast feast looks gorgeous….

    Like

  10. Pingback: The other side of the coin | jet black living…

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