“The meaning of life is just to be alive. It is so plain and so obvious and so simple. And yet, everybody rushes around in a great panic as if it were necessary to achieve something beyond themselves.” – Alan W. Watts
Ten years ago today I was given devastating news. I’d had a bone marrow biopsy earlier that day and it wasn’t long before the doctors returned and took me into the family room on the Bramley renal ward at City Hospital in Nottingham, where I’d been admitted only three days earlier, to treat hypercalcaemia and do further tests to discover what had caused it and the ensuing severe kidney failure I’d been diagnosed with a month earlier.
“Myeloma”, they said. I’d never heard of it, but I recognised that tell-tale ‘oma’ at the end that signifies a cancer. It was explained to me that it’s a cancer of the plasma cells in the blood. They also told me that, unlike some blood cancers, it was incurable, although treatable. Unsurprisingly, I asked how long I might live and they told me that the average survival was three to five years. That’s pretty shocking, especially at the age of 49.
Treatment started within the hour… it didn’t matter which specific treatment protocol I’d be given, nor whether or not I’d choose to go on a clinical trial, they all included Dexamethasone, a very strong corticosteroid, so that is what they gave me. I spent that night bouncing off the walls and ceiling and being asked to be quiet because I was disturbing other patients’ sleep. That was on Friday. The conversation about whether or not to participate in a clinical trial happened on the following Monday, after the initial shock and drug euphoria had time to settle a little.
That was the beginning of my treatment journey, which if you’ve been following this blog, you’ll already know. If this is your first time, you can find a brief catch-up option in the menu above or here: https://jetblackliving.wordpress.com/catch-up-potted-history/.
The possibility of dying within five years was less awful to me than the idea of telling my mum and the rest of my family and people who loved me; not to mention the thought of my mother outliving me. My mum was 75 at the time and although she had some mobility issues, was in reasonable health otherwise.
When I began to let people know what was going on and to share my diagnosis, I just couldn’t say three to five years. Taking it on board for myself was a very different process, which although shocking, I found I could accommodate without anger or even too much fear. I felt I’d had a good life and had had some great adventures and experiences and if I was to die young, then it would be ok. Telling other people, in particular close family who’ve known and loved me all my life felt far too devastating. So I inflated the numbers to a slightly more acceptable level… I told everyone an average survival of five to ten years. That made it seem less shocking, more digestible. But it was not true, according to the medical knowledge at that time.
Since that time, there has been a lot of research into myeloma and new treatments continue to be developed, so somebody receiving a diagnosis today would be given a longer average expected survival time.
On a sadder and sobering note, I have witnessed the death of several friends I made along the myeloma way. So, I’ve been thinking, not only of my own survival against the odds, but also of those who haven’t survived, some from myeloma, others from another cancer. I want to list them here as a nod to their memory: Annabel, Abir, Deborah, Jane, Marianne, Marie-Chantal, Mike, Rebecca, Sean, Sharon, Shay, Shelley and a dear pre-myeloma friend, Christina.
My closest myeloma friend was Wendy, who was the same age and diagnosed around the same time as me. We supported each other through numerous twists and turns along the way, including the difficult decision she had to face around treatment for an acute leukaemia she developed due to the treatment she’d gone through for the myeloma.
She loved Nordic noir, board games, travel and good food. We used to watch MasterChef together (by text) and went on holiday together several times, including two trips to the Arctic North to see the Northern Lights and go husky sledding. She died on 18 October 2017, aged 56.
I met Sam in Transplant Clinic in 2012. She had just run with one of the Olympic torches for the London Olympics and brought it into clinic to show everyone. She loved sloths and giraffes. She was her own special kind of daft, very kind, and always up for an adventure. We went to a Paloma Faith concert in London and used to make fused glass art together.
Post-transplant for leukaemia, she developed Aspergillosis, which severely compromised her lungs, eventually requiring her to need oxygen 24/7. When she contracted a chest infection in December 2019 and was admitted to hospital (again!), she made the brave decision to stop treatment and died a few days later. She was only 34.
On 29 December 2020, two days before her 85th birthday, my mum, Lilian died. She did not have any cancer, only the gradual decline of old age, hastened no doubt by impaired mobility and vascular dementia.
In her earlier life she had been an excellent seamstress and pattern cutter and although she denied it, I have proof that she had artistic talent too. She enjoyed film, theatre, art, opera, reading, good food and travel.
She was extremely intelligent and loved studying. She attained several degrees as a mature student, including an MA and an MPhil, and could speak French and Spanish fluently. When asked of her occupation by the registrar, I was pleased to say ‘languages scholar’, which is now forever acknowledged on her death certificate.
In relation to this post, on a personal level her death has released me from the concern I had ten years ago, that she might outlive me. It has also allowed me to access memories of fun times we had, rather than the difficulties of the past ten years or so, when frustration about her decline and dementia, plus a fear of dying made it hard for her to support me, or to permit me to support her.
Despite all of the above, this really IS a celebratory post about a celebratory day. Not only seeing that I have survived where others haven’t, but acknowledging loss/sadness alongside joy, in the same breath as it were – appreciating that life and death are two sides of the same coin – feels very much part of my Jewish culture.
Late summer last year, I had thought to buy a campervan and go off on a solo exploratory adventure around Europe, departing on this anniversary, but clearly it is really NOT the time to do that. But, despite all averages and estimates ten years ago, it seems that there may well be time for that to happen in a year or two.
So instead, my pretty low-key anniversary day included:
– wearing a celebratory bright orange dress – even if I was the only person to see it;
– getting on with a normal Thursday activity of delivering food bank parcels to people in need;
– calling my consultant to thank her and all the nurses and doctors who have worked to keep me alive and well;
– treating myself to a delivered Chinese takeaway;
– I even had a rare JD and coke;
– I sent slices of an ‘anniversary cake’ I baked the day before to a few special people… and of course, had a large slice myself;
(I had hoped to write and publish this blog post on the day too, but the new WordPress editor had other plans.)
When I began writing this post, I remembered my list for living (see menu above, or here: https://jetblackliving.wordpress.com/list-for-living/), which I have not been actively pursuing. In fact, I have more or less forgotten about it, but the awareness of how short life can be was reignited with my mother’s death.
That is in part what prompted me to go ahead with buying a car I’ve been after for some time. Paying for it on the day of my anniversary was almost as good as driving off into the sunset in a campervan. The vehicle registration document, if nothing else, will mark the day, at a time when a party isn’t possible. I might not be able to drive any distance for a while yet, but when I do, I shall very much enjoy my VW Eos…
and maybe I’ll drive again through Paris with the cool wind in my hair.
I guess no blog post could be published at this time without a nod to the Covid pandemic, so while I’m sad that I missed posting on the day itself, I can now include the fact that I have had my first ‘Clinically Extremely Vulnerable’ vaccination, on Monday, so all being well, I shall continue surviving a while longer.
I want to sincerely thank not only the doctors and nurses and other medical staff, but also my family and friends, whether you knew me before or have met me more recently, who in all the ways you appear in my life are important and have in all your various ways also helped to keep me alive and well.
One person in particular deserves special mention. She supported me in the most loving way throughout, both practically and emotionally, made me laugh and let me cry, humoured my wild flights of fancy on Dex days, held me when I was scared and joined me for some wonderful driving adventures through Europe when I was well enough to travel. She will forever have a special place in my heart. You know who you are and you know that I love you and thank you so much.
With love and appreciation, I remain here… just being alive, for now at least… a survivor! #imasurvivor
So lovely to hear from a fellow survivor. I took part in the Myeloma 11 trial nearly 9 years ago and I’m still in remission!
My mobility is not too good and I rely on my mobility scooter and a stick. But the main thing, is I’m still here.
I had my COVID jab yesterday and I feel fine.
Thanks for the update.
Hope to hear from you on your next anniversary.
Love from Tina. Xxx
Thanks Tina. Good to hear from you as well. And congratulations on your ongoing survival too.
So pleased to read this Jet. I can’t wait to get out in my camper van to enjoy new adventures in the sunshine. Wishing you happiness on your travels and lots of love from.
Thanks Colin. I did have a sad moment thinking about Deborah and others. But it’s all part of the big picture that is life. As are campervans! Happy trails! x
It was great to read this wonderful blog – and realised you haven’t been doing it for a very long time.
Enjoy your lovely car – but remember to drive carefully.
Hi Jet Isn’t it great that we are 10 year survivors. Like you I often think of MM friends I have lost along the way – especially those who helped me, on MUK members’ forum, in the early days after my diagnosis. I am so pleased that in spite of the particular challenges of this year, you are obviously getting by, in spite of loosing your mother. My deepest sympathies. However, I understand your having some sense of relief in view of, both your mother’s condition and your own ongoing MM journey. My PP levels are going up, but at least I know that there will be another regime of chemotherapy when the time comes. Who would have dreamt that I would be thinking of more years to come, God willing. Do enjoy your new acquisition, and hopefully you will eventually be able to drive many happy miles in it. Here’s wishing you many happy years! Mavis xxx
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This is a beautiful piece of writing Jet, and so moving. Congratulations on your 10 years of surviving and so much more xxxxx
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Thank you so much for saying that. x
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It was good to read this, Jet. I am full of admiration. A beautiful spirit you have!
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Thank you so much for saying that. 😘
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