I was driving along the M25 earlier today, heading for the Dartford Crossing, heading for Folkestone, heading for Le Shuttle (rebranding!), heading for France, when a Who song came on my playlist, with the lyric: “why don’t you all just f-f-f-fade away“. Well we all know what Roger Daltrey was really saying, don’t we? Talkin’ ’bout my generation, though, isn’t it?
Miraculously, I have not faded away, not died before I get old, nor the other meaning. Eleven years post-transplant and I continue to exist in full indomitable, three dimensional, technicolour, physical form. I am a walking miracle, “kooky and crazy to still be here… talkin’ ‘bout my baby (myself)… ah-ha-ha, and I love it so…”
When so many friends have died and now also my mother, that I have survived and am as close as one can get to being cured of myeloma, every time I think of it, I am astounded at the luck and grace of it. Neither I nor all the medical teams in the world could have known nor did more for me than they do for anyone else to make this happen. It really is a roll of the dice and I seem to have thrown a lucky seven… “You can roll me a tumbling dice.”
I’m aiming to keep this update brief, because I am, as mentioned above, en route to foreign destinations, time is ticking – I’ve just pulled in to make/eat dinner and take a rest before the crossing – and the end of my anniversary – transplantiversary day is nigh. (I’d hoped to write this a few days ago and publish today, but preparing for this trip has taken obvious priority.)
Anyway, for now, my destinations are, in convoy with a friend in her own campervan/home on wheels. (If we needed any more song references, how about Convoy, rubber duck, c’mon?): Calais, to cook for the Refugee Community Kitchen again; Lens for a concert by Souad Messi, an amazing Algerian singer – look her up if you’re curious; Antwerp, Ghent, Roeselare and Wijtschate, in Belgium to see friends; Bruges in the middle of all that, just because it’s so lovely; maybe nipping to the Marché aux Puces on the outskirts of Paris.
(If anyone would like to contribute to funding RCK, who have been cooking and serving hot nourishing food with dignity to refugees/displaced peoplein the Calais and Dunkerque/Dunkirk areas for a number of years, please use the donate link on their website: https://refugeecommunitykitchen.org/)
At that point my friend will head back to the UK for more solo adventures, while Koko and I continue south and west through France and on to Pamplona, where I intend to park up for a few weeks, improve my Spanish, see friends, get to know the city and the regions of Navarra and Cantabria again, maybe even look at houses…!
What’s become delightfully clear to me of late, at the not so grand ‘old age’ (but it is when you’re told at 49 that your life expectancy could be as little as 3-5 years) of 61¾ is that finding and holding on to people who care for me, who love me exactly as I am, who can celebrate with me my continued existence, and actually celebrate me… when our time here, even for those who live long lives, is still so very brief, is another kind of grace and luck. Right now I feel full of grace (if not the elegant physical variety), luck and love. So thank you to everyone who’s with me in this silly old – and the only – craps game, called life.
As for the rest, the people who, for whatever reasons, create obstacles and bad feeling, they can just f-f-fade away and off!
“Well, mercy sake’s, good buddy, we gonna back on outta here, so keep the bugs off your glass and the bears off your tail, we’ll catch you on the flip-flop, this here’s the Rubber Duck on the side. We gone, ‘bye, ‘bye!”
Today is the twelve year anniversary of my diagnosis and my whole life being changed irrevocably, but not as one might imagine, badly.
I keep on living and I continue to stay in remission. Hurrah!
I outlived my mother, who died in December 2020. Not exactly a Hurrah! but the chance of her outliving her daughter was very high when I was first diagnosed. I’m glad that didn’t happen.
I continue to live with fatigue, brain fog, anxiety and back pain, all meaning that paid work is not possible. Also Hurrah! (For the ‘early retirement’ not the other stuff.)
I continue wondering about purpose and meaning and other existential questions. Hurrah?
Where my thoughts go, not only in the small dark hours of a wakeful night, but often and at any time of day. It’s a balancing act of awareness and appreciation of both life and death and their interconnectedness, not ignoring either, but finding my way along the tightrope that swings between them; making the most of life; managing responsibilities as a now orphaned daughter, sister, aunt, friend and citizen of a world; creating joy or contentment where I can and being mindful of my own privilege/luck in surviving, while acknowledging and preparing for death and the unexpectedness of old age, complete with its aches, pains, frailties and losses.
This might seem like a gloomy topic for a celebration of my survival, but I don’t see it as gloomy, just realistic, honest and surprising/fascinating.
Some years I celebrate… some years go past more quietly, but the date is always noted. Yesterday, without thinking about the significant date, I bought myself a present: an old painted wooden shutter from the window of a Thai courtesan house. If I can manage it, I think she’ll be installed in Gloria (my campervan).
I also had a manicure and pedicure with my friend, which entailed a lot of hilarity. What better way to celebrate than laughing and bright red nails?!
I don’t have any particular plans to celebrate further today, other than acknowledging the ever-stunning miracle of my twelve year survival (when 3-5 years was the average life expectancy at the time of diagnosis); and relishing the ongoing adventure of being alive. Of course, cake might be eaten.
After over two years of caution and care, isolation and anxiety, the minute, truly the day I decided to drop my guard, not even entirely, just slightly… Covid got me!
I went to Sheffield to see art and a friend. I hugged my friend and we chatted excitedly in a café over lunch. Finally I gave her a lift home, only about ten minutes in the car, but unmasked. The rest of the time we both masked to go into indoor spaces, but the damage was done.
The following day I woke up with a mild sore throat, which only worried me once my friend told me she had tested Covid-positive that morning. She had had a mild sore throat the previous day but put it down to wild swimming and taking a chill. In my new relaxed approach, I chose to drop my heightened vigilance.
What’s remarkable is that I had no incubation period; it started the day after I contracted it on Wednesday. I didn’t bother to test on Thursday as I was pretty sure it wouldn’t show up yet. I tested on Friday and it was negative, so I remained at home and asked a neighbour to collect a prescription that was ready for me, just in case. However, the act of testing was horrendous. I guess I hadn’t worked out the best spot to swab my throat and ended up violently gagging several times.
The next few days were weird, as I had very mild symptoms – no worse than, and actually not even as bad as, how I feel when I get a cold. Did I have Covid? Well my friend did and seemed to be having more onerous symptoms than me. Did I just have a cold? What a bizarre coincidence that would be! The uncertainty along with the mild anxiety that it could become much more serious for someone like me was harder to bear than the symptoms themselves.
I had a sore throat on and off, a headache on and off, occasionally runny nose, my stomach/digestive system was gurgly and unsettled. No fever, no aches or pains, no cough or loss/change in taste, no sneezing to speak of.
It wasn’t until the Tuesday that I decided to test again. I was reluctant because of the experience on Friday. However, I must have found the sweet spot, as I barely gagged at all AND I got a positive result.
The next thing I experienced was a whoosh of joy. How bizarre is that?! I was dancing around the kitchen singing “I’ve got it. I’ve got Covid!” with a ridiculous grin all over my face. The only explanation I can find is a sudden release of the anxiety of not knowing, plus the anxiety of over two years of staying safe (read ‘ongoing semi-lockdown’), along with the extremely mild symptoms I was experiencing. I had caught it or it had caught me…? It seemed highly unlikely I would die or even get seriously ill from it. My consultant’s words returned to soothe me.
As a good citizen and an appreciator of medical sciences, I’ve been recording my daily wellness on the ZOE Covid Study app, so of course I recorded the result there. I also entered it onto the NHS website. Very promptly I received a message from the NHS telling me that as I am special (immune-compromised), I’m eligible for early intervention treatment within the first five days of symptoms and that someone would call me to arrange it. I was already on Day 6, so that raised a mild panic. Had I left it too late?
There are two types of early intervention: one is a five-day course of antivirals, which are taken in a similar way to antibiotics, i.e. you have to take them every 12 hours and take the whole course even if you begin to feel better before the end of it. The other is an infusion of antibodies, which I think can be given, with medical discretion, up to seven days after symptoms arise.
The promised phone call came later that day and they assured me it was not too late and that I would be able to receive an infusion of antibodies at City Hospital. Again bizarrely, this news delighted and excited me. This is maybe proof of how deathly dull and monotonous my life has/had become. A day trip to the hospital, not to mention that I could park on campus for free was so novel, it might as well have been a day trip to the seaside. I have a fondness for City Hospital; even though I wouldn’t be going to the Haematology department, it still has a sense of home and safety for me, but is that enough to make a person excited? Hmmmm…
I think it proved beyond doubt that I really am immune-compromised, so the past two plus years of semi-isolation have not been because of something in my imagination. Bearing in mind that while I sometimes struggle with it, I am very used to my post-transplant fatigue and other issues that are part of my life these days. They’ve been part of my life for ten years now, so it’s hard to recall how I was before, or to know how I might have been now if I hadn’t had myeloma.
Because most of the time I am reasonably well, fatigue, back pain and breathlessness aside, I have had moments of imposter syndrome doubts along the whole way., especially after seeing friends die and here I still am. No more so in these Covid times, and not helped by comments from some people about maybe needing to drop some precautions, even quoting relatives with ‘cancer’ making precaution-dropping choices, as though ‘cancer’ was just one thing.
This was/is married with varying degrees of unwanted resentment towards all those who seem to be free of the health concerns I had and were able, at least these last few months, to go to concerts, jump on airplanes and generally gad about in their own versions of ‘getting back to normal’. And then the peculiar deliberate(?) misunderstanding of the purpose of masking. But I’ll leave that one for now. Suffice to say that the cognitive gap between what I know to be true and what I’ve witnessed has been hard to balance.
Anyway, the following day a nurse from the least ever poetically named but exactly saying what it does on the tin ‘Covid Medicine Delivery Unit’ [CMDU] called me. Within a few hours, I was sat in a rather familiar big comfy chair, with a pillow under my arm and a nurse cannulating me.
In truth, there was absolutely nothing exciting about the experience. But equally, there was nothing awful either. It all took hours, even though the infusion itself only took around 30 minutes. There was the saline flush before and after; there was a fair bit of sitting and waiting – I’m not even sure for what or why; there was a lot of background noise caused by the ventilation system, and the few patients there were sat so far apart that conversation wasn’t possible. It seems the ventilation system worked very well, as the one nurse who had been at the unit for months had managed to avoid catching Covid, despite the job. It was the first day on the unit for the other one. Just the two of them, plus a doctor and only four patients during the time I was there.
A thought I had as I was driving to the hospital was why they weren’t offering these early intervention treatments to everyone. Without me asking, one of the nurses divulged that each shot costs £2,000. That’s why it’s not offered to just anyone. And that further proves that I’m special. So there!
That was Wednesday. By Friday I tested negative. And that was that!
I am stunned at how mild it has been for me. Really stunned, after all this time of caution and anxiety. It has only added to my sense of being an imposter, on a number of points. I am of course aware that the current variant is mostly very mild in its effects. I have also had five (yes, five!) doses of vaccination – again because I’m special! And I did receive the antibodies infusion, without which there was still a chance that despite its initial mildness, it could have gotten noticeably worse after Day 10. This I was told by the doctor who called me after my positive test result.
I also need to add that I have had several days of waking up with a sore throat and/or a headache since then (two weeks ago today). I was concerned enough that I did test myself again last week, but it was negative still/again, so I’ve stopped overtly worrying about it, but have a sneaking concern about Long Covid, knowing three people personally who are dealing with it, although their symptoms mostly focus around fatigue rather than sore throats or headaches.
I had intended to go away around the time that I caught Covid, so after some deliberation, not very much planning and a big dollop of forcing myself, I am now ‘away’ in Gloria. I’m writing this from a campsite near Strathblane, north of Glasgow, with a vague plan-not-plan to get up to Orkney if I can. I’ve had several wobbles since coming away, when the fatigue blanket swoops down upon me and I feel like I could sleep forever, or just turn around and go home. But today is a good day. No travel, keeping it very simple and low-key, I popped into two art galleries, only because I had to go into the nearby town to get some cash. Other than that I’ve been sitting around staring at the trees and the four sweet dogs they have here. A little poetry writing for an online course I’m taking. And writing this, of course.
Today, Monday 16 May, is the ten year anniversary of my stem cell transplant. I’m still here – over eleven years after diagnosis, still in complete remission. There’s really not a lot more to say. I celebrated an unexpected ten year post-diagnosis survival last year, so this feels like maybe over-egging the pudding. Although, heck, why not celebrate every single day if one has the energy and feeling for it?!
About that… the energy and feeling for celebration… I wanted to mark the day with a post, but find I really don’t have much to say that I haven’t said before, nor do I really feel celebratory.
However, I’ve never shied away on this blog from writing how it actually is for me, so I shan’t now. Perhaps it’s expected in some quarters, that I post in high spirits, with a wild party planned or at the very least, a bottle of champagne, but that isn’t how I’m feeling just now. I began this blog to write about my experience of living with myeloma and I think it will be beneficial to me, even if not an uplifting read, to write out my complex thoughts and feelings at this momentous time.
This last year has been hard: lonely, anxious and overwhelming. While others have leapt at the opportunities to return to work, school, holidays and social/cultural events – returning to normal, I’ve needed to protect myself even more than before, because ‘everyone else’ wasn’t. My need for other people to continue employing sensitive precautions began to be deemed unreasonable and restrictive, like I was fussing over nothing, overly-demanding, paranoid. Ultimately I was left feeling gaslighted, doubting my own reality. On top of which, I have been dealing with the onerous admin and practicalities of my mum’s death, along with the oblique ways that grief can work, which aren’t always obvious as grief, such as a lingering feeling of being lost and disconnected from my own self; a haunting awareness of death and ageing; and an almost unmanageable rage – no doubt Covid mismanagement and Brexit were in that mix too. I have also simply felt sad and cried many times too.
I was finding it difficult to get myself out of the house; the effort required to motivate myself, to wash and dress, to plan an outing – even if that was just a walk in my nature reserve – plus the anxiety of not knowing whether people would behave with care, whether organisations would manage their venues safely, and how I would deal with that – did I mention unmanageable rage? – made it seem just too difficult, too much work for the meagre benefits, especially as I also had to either go alone or find people who were both available, Covid-free and sensitive to Covid-safety. Nobody was reaching out to invite me anywhere, so just the effort of making something happen felt exhausting.
Navigating social conversations after the ongoing semi-lockdown I’ve been in for so long, was demanding because I was out of practise, and not sure if I could be bothered with trivial chit-chat, which I’ve never found especially nourishing – often quite draining – at any time, despite craving (meaningful) contact with other humans who weren’t me. So I stayed at home and listened to my own voice, in my own head more than is healthy for me. Generally, I like my own company, but I’ve had a bit too much of it of late. A repeating mental image has been with me for some months now, of a dried pea rolling around in a shiny empty tin can, creating a tinny clanging echoing sound, with nobody else to even hear it. On the plus side, I have yet to contract Covid!
It feels very exposing to share these experiences and I am not fully out of this strange space yet, but I can feel the sands shifting. I hope that others who have felt/are feeling similarly will feel acknowledged and reassured on reading this that they are not alone. I cannot be the only person having this experience, even if nobody is talking about it – at least not to me or in my hearing.
On a more positive front, I think I have now secured the sale of mum’s flat (subject to contract!), which has been an ongoing nightmare for over seven months. The piles of her books, CDs, LPs, pictures and other more random items are gradually diminishing in my studio. My physical space is starting to feel a little less overwhelming. I can see more floor and table top space gradually appearing. Flickers of creativity are starting to wink at me among the ‘stuff’, as the physical surfaces emerge. I have done a little writing, even if it’s not in full flow yet. Writing this feels like starting up an engine that has been dormant for too long, needing oiling and encouragement, grunting and grinding back in to motion.
I did also buy a campervan, in November; her name is Gloria and she is rather glorious, although not without her own issues, like a leaking rear door. I’m spending time, when I have the motivation, on tweaks, fixes and ‘interior design’. I’ve been away on a few short trips in her, with an intention to do a longer trip up to the north of Scotland, possibly in June, if I can get my motivational act together. The bigger plan/hope is to take a much longer trip to Spain later this year – my first time abroad since 2019. I’m gaining confidence in how to live in her, but the driving is already a joy, even if the fuel costs really aren’t. I have also been considering a visit to New York, to see my nephew in particular, along with other family.
The biggest shift, however, occurred very recently… A couple of weeks ago I had a regular transplant clinic phone appointment – I’ve not set foot in a hospital in two and half years – when my consultant confirmed that there is no evidence to suggest that catching Covid would have any detrimental effect on my remission. I had wondered if the immune system was put under pressure to fight off Covid, whether it might be weakened and thereby allow the myeloma to relapse. She also told me that several patients had caught Covid and only a few had been admitted, none to ICU and no deaths.
The following day I visited a friend, who has also had a transplant for lymphoma. Additionally, she receives a weekly injection of immunoglobulins, due to a deficiency only discovered when she was diagnosed. She works as an art teacher in a secondary school. Unsurprisingly, since the protective measures were removed in schools, she caught Covid. She told me she had two weeks of really bad headaches, but no respiratory symptoms or fever. More to the point, she recovered and is back at work and having had it, she is much less anxious about the possibility of catching it. I definitely recognise that sense of the fear itself often being worse than the thing one fears.
So, in combination, these two things reassured me; if I were to catch Covid, it probably wouldn’t be too serious. Having said that, several people I know are now living with Long Covid issues of fatigue, loss of concentration/memory and physical weakness, not to mention one friend who’s had a mini stroke/TIA. Already overly familiar with fatigue, lung capacity reduction and mental fog/executive function issues, I still really do not want to catch Covid. But something switched for me… I am now ready to get back out into culture and art, creative and social situations, without the levels of high anxiety and wariness I’ve been living with for the last two years. Obviously, I shall still want/need to be sensible, but it’s about a change in the quality/attitude of how I go forward.
As though the universe decided to support my new-found determination, a few events coincided within a few days of each other:
After 18 months of liaising with the local nature reserve and getting friends and members of the community to contribute funds, we installed a new bench on a path down to the river. Eleven years ago when I was first ill and seriously anaemic, I really needed a bench on that particular stretch, where none existed. Others have said the same thing. So I was delighted and proud to ‘unveil’ it to a select audience of a few of the 40 contributors, on Friday 13 May – a poignant date, because as well as my imminent anniversary three days away, it was also the birthday of my friend Wendy, who died in 2017.
On Thursday I received a text from my GP surgery, inviting me for my fifth vaccination – yes, FIFTH! – I hadn’t heard this was even a thing. I booked it there and then and received it on Saturday at my local Boots. My arm has been complaining, but I am not! I now have a full house: two Astra Zeneca, one Pfizer, one Cominarty and a Moderna to complete the set.
The third piece of encouragement was seeing that one of my favourite annual art events, which hasn’t taken place for two years, was back this last weekend: the Lady Bay Arts Trail. I went yesterday, with a fascinating creative friend, whose companionship on any outing is always delightful. Meeting artists and seeing art again, with a delicious ‘side’ of Israeli felafel from a street stall, was exactly what I needed.
In all, this feels like the beginning of a new chapter and occurring as I celebrate this anniversary seems very timely. Also, writing this is helping me see that I really am starting to retrieve myself, step by gradual step, learning (again!) to accept and accept some more and not push myself emotionally, creatively or physically to do more than I can at any time. This acceptance and patience feels much harder now than the original diagnosis and the possibility of dying did eleven years ago. How strange!
I’m reminded of this quote I used in my last post:
“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
So, while the energy and feeling for celebration may not be in evidence, the desire to just be alive, to experience everything – even the despair and frustrations, rage, sadness and ‘meh…’, along with art, creativity and the pleasure of travel, family and friends; to fulfil my survivorship, when others didn’t get that opportunity, is still with me, alongside the reminder that it isn’t necessary to achieve or do anything at all. Life just is!
The sun is shining now, so I’ll finish and publish this long (much longer than I’d intended) post and get out into the nature reserve, with renewed energy and resolve and maybe a sketchpad or notebook. I’d like to go sit on the bench, so if anyone is sitting on it, I shall have to restrain myself from pushing them off and remember that it belongs to the community… It’s not mine. 😉
“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.
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
“Learning that life isn’t about waiting for the storm to pass, it’s about dancing in the rain.”
That sentence is the byline of my blog. I have to admit that it’s been a lie in the most literal respect, as I have never liked the rain and wouldn’t normally choose to walk in it, let alone dance. However, life is strange and sometimes brings you experiences you didn’t know you might need or want…
Before I elaborate, as an annual update… I passed my eight year stem cell transplant anniversary in May and remain in remission and in mostly good health. By the way, my lovely humble donor (see my previous post) is now pregnant and awaiting the birth of another life in late July. I’m secretly hoping it might coincide with my own birthday, because I like patterns and connections.
Anyway, due to my permanently compromised immune system, I have been keeping myself at home since early March, before the official pandemic lockdown in England. Despite living next to a beautiful nature reserve – the reason I bought a house here – it has been difficult to take regular walks there, because the paths are narrow and many people weren’t even attempting to maintain two metres distance from me. There were also a lot more people around than usual. This often meant I had to get off the path into the bushes and sometimes stay there for several minutes, while a stream of pedestrians and cyclists passed by, not seeming to give much attention to the need for distance; often not even acknowledging me waiting for them to pass.
It made the whole experience highly anxious, when the act of walking was supposed to be for both my physical and mental well-being. I began to feel that I couldn’t safely go out. At one point, I considered getting flashing lights or a sign to let people know that I am at higher risk than most. I haven’t entirely abandoned this idea; in fact it’s an art work in progress.
After one very sunny Sunday, when the whole world seemed to be out in the nature reserve, involving a string of encounters with thoughtless, rude people, even being told I was a stupid woman and should walk somewhere else; and culminating in being practically run off the path by a large group of men on bikes being obnoxious and shouting that it was all a hoax when challenged, I stopped walking there if there was any chance of large numbers of people. In effect, this meant not going at the weekend, or even during the week if the weather was warm and sunny.
Instead, even now, when I’m generally feeling less anxious about briefly passing people, but more people are paying even less attention to keeping distance, my preference has turned to walking when it’s grey, cloudy, cool or cold and yes, even when it’s raining. I wear my headphones and listen to a shuffled mix of music, so on any one walk, I might hear songs that make me slow down and contemplate existence; sometimes cry; fierce punky beats that get me stomping along; mixed in with upbeat, happy tunes. I tend to go with the flow and let myself be moved emotionally and physically by whatever comes on. So finally, yes, I have been dancing in the rain… and really appreciating the freedom to do so.
The metaphor of my byline has come into being in a more profound way too, where the rain is not only a passing storm, but a cloak of safety and comfort in these anxious times, rather than grim, depressing dampness, as I would have perceived it in the past. I haven’t even minded getting a bit wet.
By the way, the video above was filmed by me on one of my walks.
This anniversary post is to recognise that I’m still here, in remission, seven years on from the day (4 February 2011) when I was first diagnosed.
In that time I have seen a number of friends die, from myeloma, leukaemia, amyloidosis, inflammatory breast cancer and related conditions or infections. And I’m still here, in remission.
I’ve met my stem cell donor, who’s a lovely and humble young woman, who says happily that she’d do it again in a heartbeat. That’s how easy it is! So if anyone reading this has any thoughts of signing up to a stem cel register, she and I would both like to encourage you to go ahead.
Anthony Nolan will register people aged 16-30, while DKMS will take people up to the age of 55. In both cases, you simply fill in a form and swab the inside of your cheek. It’s that simple! I know this because I volunteer giving talks in schools and colleges about it and signing up young people at recruitment events.
You stay on the register until you’re 60 and you could be a match at any time, or never get called. Those who do, in my experience, are delighted to be able to donate. I know this because I volunteer to visit donors on the day they donate at Sheffield Royal Hallamshire Hospital.
As a recipient, I can vouch for what a huge impact that little act can make to someone who might otherwise die. I’m still here and in remission.
And finally, some statistics that show the longer you survive, the longer you’re likely to survive. See charts below.
So while I don’t have a five year plan (I never did!), I can think about next year without being too anxious that I won’t be here. I could relapse, of course, but these days I feel generally calmer and more confident about being around to celebrate eight years post-diagnosis; to be able to say again that I’m still here and in remission.
This chart shows that the average life expectancy for someone in my situation has risen by three more years from this time last year. I’m potentially looking at a further 14 years. When I was first diagnosed, the outlook was pretty grim, around 3-5 years. So I’m already winning!
And this shows that the percentage of deaths at seven years post-diagnosis has dropped 1% from last year.
I’ve not done anything in particular to celebrate today, but I’ve been thinking about my experience; remembering those who’ve died; thanking those who supported me, emotionally, practically, medically and financially; posting this; and appreciating that I really am still here and in remission.
Last Saturday was a huge day in my life history calendar. Six years ago I was diagnosed with multiple Myeloma.
Each year that passes makes that day, 4 Feb 2011, more and more significant and makes me more aware how lucky I am to have survived to this point, from an “incurable but treatable” cancer. I’ve got through all the treatments, two stem cell transplants and GvHD. And I’ve witnessed a number of fellow citizens of Myelomaville die or relapse and have to return to treatment.
What’s maybe more special about this year is that when I was first diagnosed, I was told that the average life expectancy with a myeloma diagnosis is 3-5 years. I amended and broadcast that as 5-10 years because I just couldn’t bear to give out such scary news to those who love me. So, I can now reveal that I have survived beyond the average I was given, which in the intervening years has also expanded. Myeloma is still deemed to be incurable, but there are many more people getting earlier diagnoses and due to incredibly fast-paced research and drug/transplant development for this disease, many more people are living much longer.
Having said that, I’m also aware of feeling guilty and sad that I’m not feeling totally celebratory about my survival. That’s just how it is; I don’t want to be persuaded, cheered up or ‘fixed’. Just heard.
These days, I’m mostly physically well, but with some lingering fatigue, loss of concentration and memory and varying anxiety. I do miss the energy and excitement of life on steroids. Adapting to a slower, calmer, more ‘normal’ way of being seems quite a challenge.
I’ve not felt like writing in the past year or so – well, there’s not been a lot to say. So this will probably be my last post… at least as long as I remain in remission. They say that the longer I survive, the longer I’m likely to survive… so who knows, it may be the last post ever… I’m not sure how I feel about that.
I feel irrevocably changed, on both a physical and emotional level. I am not the same person I was before. That’s ok, but I feel like I’m still working out who I am, what I want to be/do with my life.
In the meantime, I volunteer:
– as a member of Myeloma UK’s PEER Network, offering my experience and support over the phone to other myeloma patients facing an allogeneic stem cell transplant;
– with Anthony Nolan on their Register & Be a Lifesaver (R&Be) education programme, going into sixth forms and colleges to inform young people about what’s involved in donating stem cells, blood and organs, and recruiting them onto the stem cell register;
– with Nottingham Nightstop, offering occasional short-term overnight accommodation to homeless young women;
– I’ve also been out to Calais to help cook and prepare food for refugees at Dunkirk, with Refugee Community Kitchen. I hope to go again.
While my energy seems to fluctuate, with fatigue affecting me more some days than others, with no obvious rhythm, I have continued with Tai Chi, which I’ve been learning since I was first diagnosed. As for other interests, I’ve been drawn to the arts: painting, making ceramics, life drawing, printing, felt-making; and dance/movement, such as Butoh, Contact Improvisation and even getting involved in a performance art project. I am considering taking an Access/Foundation course in Fine Art at a local college, hoping to bring all these creative interests together.
I’ve learned Playback Theatre, which has become a big passion, not just for myself, but for how much it can be a cause for creating connection and community in the world, which I think we desperately need at this time. So as well as attending workshops and training, I am striving to develop a Playback Theatre company locally.
I still enjoy travelling, but less extravagantly (and less frequently) than a few years ago, without the fuel of steroids and without the propulsion of imminent death hanging over me. My last major trip was driving to Paris with a friend, to see Marianne Faithfull in concert at the post-bombing renovated Le Bataclan, then north to Calais to volunteer. My next trip may be to Budapest in April, or a driving tour with another friend in Southern Spain in May… to celebrate my five-year transplant anniversary.
Finally, I want to say thank you to all of you who’ve read my posts and commented, supported, empathised, shared your own stories and cheered on from the sidelines. This post is mostly to let you know I am alive and getting on with my life “just like any other bugger”. Thanks for being there. x
In July I attended a Reception for the All Party Parliamentary Group on stem cell transplantation at the Houses of Parliament. This is a group of MPs who support, campaign around and are interested in stem cell transplants, at a governmental policy level.
Last year I was invited by Anthony Nolan to attend a meeting of the APPG on SCTs to talk about my own experiences post-transplant, which was an interesting experience for me and I hope that it was effective in informing MPs and other interested parties about what what we face and what can happen after a transplant.
Anthony Nolan’s campaign last year, A Road Map for Recovery was to ensure good quality treatment and care at any point post-transplant, wherever we may live in England, rather than rely on the policies of the local CCGs [Clinical Commissioning Groups], who take over the funding of treatment after 100 days post-transplant, which is a fairly arbitrary date and can mean a fairly arbitrary decision on what care we may receive dependent on where we live. I’ve been very lucky living so close to one of the UK’s centres of excellence in haematology. Not everyone can say the same.
As George says in the video below, the transplant is only the beginning. I think the majority of people would probably think that once you’ve had and recovered from a transplant, that’s it: cured! It’s not quite so simple. I’ve been very lucky, but I know a number of people who received a transplant but died from an infection or from GvHD [Graft versus Host Disease], both of which are common issues post-transplant.
If you look really closely, you may see me standing at the back as David Burrowes MP speaks to the gathering. And for once, I wasn’t on camera, speaking or interviewed on the video. A rare moment indeed!
Unfortunately my own MP, Anna Soubry, was not able to come to the Reception, but she has assured me that she is aware of and supports the work of Anthony Nolan.
Over 30, and under 50? You can register with the British Bone Marrow Registry via the Blood Service when you next/first give blood. Here is the link to the register: http://www.nhsbt.nhs.uk/bonemarrow/
Oh my goodness, how long has it been since I properly wrote anything here? Those of you who are distant strangers may well have feared that I was no longer around. I am! I am still very much around and in remarkably good shape.
I’m one of the lucky ones. Yes, my auto transplant failed very quickly, but since my allo transplant, I’ve had really very few issues. I’ve had very few infections or hospital admissions and certainly nothing too serious. I’ve had some Graft versus Host Disease [GvHD], but it has been only mild to moderate. (Makes it sound like the shipping bulletin.) Nothing life-threatening. And these days it’s all stable and very mild.
I’ve been discharged from Respiratory clinic, now that I’ve passed the milestone of the first two years post-transplant – the peak risk period for lung GvHD. My lungs, while not recovering any function, have not lost any either. In fact they have remained stable since I started treatment. I was sad to say goodbye to the lovely Dr Fogarty.
I still have regular ECP [extracorporeal photopheresis] treatment to keep stable or maybe even further improve the minimal GvHD (lung, scleroderma, mouth, vagina) I have now. The ECP treatments are now only every eight weeks and may well decrease in frequency after my next GvHD clinic appointment. I still attend Transplant clinic, but that is also around 8-12 weekly. It’s all a lot less prominent in my diary and in my life, thus the vagueness.
With my discharge from Respiratory monitoring, I was also able to stop taking Azithromycin and a Becotide (steroid) inhaler. I still take a good old handful of tablets – Aciclovir, Penicillin, Imatinib, Omeprazole and Prednisolone, but this latter is now down to only 4mg a day and I’m on track to reduce it by 1mg each month. So hopefully by November, I won’t be taking any steroids. I also take a supplement of Glucosamine Sulphate and Chondroitin; I went through a period of leg, hand and foot cramps and joint pains, which have fortunately stopped since taking the supplement. I’m hoping to stop taking them soon too.
Strangely, as my clinical needs diminish, attending appointments has changed from being a regular and quite enjoyable part of my weekly/monthly routine to more of an inconvenience or chore, something that gets in the way of the other things I was doing, whereas previously, they WERE the things I was doing. I never thought I’d get to feel like that and I’m not sure I like it. It’s the normalising of my life, which many people would hugely welcome, that I actually find tricky to manage psychologically. I had a role as a patient; I’m not really sure of my purpose now.
Don’t get me wrong… As those of you who know me in real life, or on Facebook, will be aware, I do a lot – volunteering, Playback Theatre, networking, painting and other creative arts, training and workshops, knitting, socialising, travelling. People frequently advise me to slow down and take it easy. But that’s not me, that’s not what I’m drawn to do. I still want to make an impact on the world; make a difference; be creative; see, do and be as much as I can; make the most of my life.
Finding a balance between those desires and the need to relax, rest and ground myself has always been difficult for me. Maybe that’s why ‘returning to normal’ feels so hard, because now I also return to my ‘normal’ (pre-cancer) way of being in the world and have to manage myself in a way that I haven’t needed to do while I was really ill or recovering from treatment. For most of the past four years, I have managed – I know not how – to find a very zen-like state of acceptance without really trying. An acceptance not just of having cancer and facing death, but also of myself, my purpose, the meaning (or lack thereof) of life and the world around me. For most of that time, I was relatively free of anxiety.
I am certain that will sound very bizarre to anyone who has not been in this situation, and maybe for some who have been in a similar place but have reacted differently to me, it may be hard to comprehend. But there you have it! That’s my truth.
And now… In so many ways, I’m ‘back to normal’…
And yet, it’s not quite the same. I can forget to some degree and much of the time what I’ve been through and that the myeloma will likely return. It is still deemed incurable after all. And I don’t spend much mental energy thinking about it, but it is still there. An ever-present fine haze over my life.
But it’s when I do forget that I get caught up again in the day-to-day anxieties of ‘normal’ life; I lose a sense of meaning and purpose in my life. So the haze is really not a bad thing; in fact I appreciate its presence. I appreciate being able to hold on to that potential relapse as a reminder to keep making my life count, to make it mine, to make it worthwhile, to make it something I can look back on and be pleased with how I spent my time, to be able to die knowing I have no regrets.
Phoebe Snow, singing a beautiful version of the Billie Holliday song, ‘No Regrets’. Phoebe Snow died in April 2011, not long after my diagnosis. I hope she died with no regrets either.