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. 😉