All Quiet on the Western Front

Is it ok to write when nothing much is happening? I suppose so. Finally a week with almost nothing in particular to do. A few days without too much drama is a good thing. Mind you, after a fairly adrenalised few months I realise that my version of ‘quiet’ has changed. Still two days at the hospital. A quick trip to A&E, a blood test and four or five upcoming appointments or scans in the next five days. The nurses charmingly describe me as their ‘young’ patient. I’m not but it’s kind of them to say so. I see plenty of people my age but maybe I roll like I’m younger. Or come across as immature. Or carefree. I hope so. I’ll take the compliment. My version of ‘nothing’ this week has been (finally) drinking decaf coffee and painting, packing up my father in law’s things as he moves to a home for people with dementia (that is a whole ‘nother story for another time and not for the blog), squeezing in a trip to the dentist to check for infection in case of necrosis of the jaw, reporting chest pains and high blood pressure on Wednesday which led to a quick day admission. Phew. But the outcome was positive as I found out my white blood cell count is holding well and other levels of things that usually drop with these drugs are also fine. So I have taken that as a cue to go out tonight. A kind friend is taking me to see American jazz /gospel star Gregory Porter at the Royal Albert Hall and as I sit and wait for her in the sunshine in the early evening hubbub of South Kensington’s outdoor piazza I need nothing. Apart from maybe a giant glass of rosé but I’m Not Doing That anymore am I? Oh no not me. Matchafriggingcoconutlatte all the way.

A letter from my consultant to my GP confirmed the suspected heart thing that I wasn’t really paying attention to in the wake of news about the two new tumours last week. It had a long name so I parked it till next time. Apparently I have a likely congenital heart condition called a quadricuspic aortic valve. Most people have three leafs to their aortic valve like a trinity or standard clover leaf. I have four. Like a lucky clover. Lucky me eh? More evidence that I am a magical unicorn. But really what the actual f***? 😅🤣🙃 I mean, on a dull but pleasant week I am ready to absorb this news now and read about it but, REALLY??? And it’s been there since birth? I’m half expecting the next scan to find buried treasure. It also leads to an enlarged heart over time and may be why I am waking up coughing or as if I suddenly stopped breathing. I understand it is potentially a problem but I am taking it metaphorically. I have a big heart and something ‘extra’ about me 😁. You know it. And this is entirely unrelated to the cancer. How is it possible to be walking around feeling pretty good with all this going on? And how did I get to half a century without it being a problem. It would explain the chest pains etc and can become problematic if the blood that should be ejected on each heartbeat leaks back. As I get older and the valve gets tired and tighter it can lead to trouble breathing and chest pain and…death. All roads lead there it seems. But ain’t that the truth. So this news and my enforced appearance at A&E has triggered another slew of scans. But I’m genuinely FINE and getting used to the drugs. Maybe it will change. I feel the odd twinge when I sit or lean awkwardly where a tumour is but apart from being profoundly and suddenly tired sometimes, I feel pretty normal. Maybe none of it is true. A big old cosmic joke. I honestly have not got the spare energy to worry about it. Only to marvel. And just keep turning up and saying ‘oh how interesting’ like a little scientist.

So nothing much is happening. Just a few more cosmic wonders. And it is a wonder I am walking and talking and singing and dancing (mainly in the kitchen by myself). Other than hospital I have very little to do but plan my inaugural lecture and learn some songs for my gig. I have ironed all my linen clothes and cleaned the kitchen a lot. Painted a bit and bought new pink and purple paints ahead of an open studio end of June. Helped with some tiny organisational things for our upcoming 30 year Cambridge reunion. I am hugely looking forward to this and trying hard to stay out of hospital next week. It’s been very restorative to be back in touch with so many people. I do feel a bit rueful and envious of my 19 year old self. She had no idea of the joys and the woes to come. Actually by 19 my mum already had her cancer and my grandma died of it on the night of our matriculation dinner so I had some idea. Mind you 51 comes with less self doubt and angst and I’m grateful for this particular freedom but still, oh to be 19 again. So I’ve had my hair done. Been to the gym. Swum a bit. This must be how life is for ladies who lunch. I’m not sure it’s totally normal for someone with stage 4 cancer to be running around but maybe it is. I know a couple of wonderful women who do it all. Is it odd to say I feel lucky? And, happily, I am occasionally slightly bored. Bored is a luxury There is no such thing as bored as I tell my kids. Just being boring! Let’s call it ‘wondering what to do next’.

In this hot weather I am becoming languid. Allowing myself to sit around longer, go slowly, lie down with a book and fall asleep. Be less purposeful. Get distracted and not chastise myself. I barely know what day it is. Long may this continue.

Update: post Gregory Porter at the Royal Albert Hall. Sometimes music reaches its greedy hand in, grabs your spirit and rips it right out of you and holds it up to the light and says ‘there! There it is! You do have a soul after all.’ Gregory had the whole of the Royal Albert Hall singing his song Liquid Spirit. We started off timid and ever so British and by the end we were a shy but mighty gospel choir. It made me want to go to church and sing gospel music (well the latter really. I’m done with church having grown up in it, although it did give me a basic musical training and the gift of being able to sing in a choir, follow a conductor and have the confidence to perform.) This was a special night. The spirit moved us. Even the most uptight and British of us. Since I’ve been going to my jazz performance course I pay more attention to singers and their phrasing, their gestures, how they work with their band. How they gently include the crowd. This great man had us in the palm of his hand. If the devil was out tonight he must have packed his bags and gone home. I’m so grateful to my friend Aubrie for taking me and to her husband Jez who I found out gave up his ticket so I could go.

This is a slightly morbid thought to end the night on but I keep thinking…if I die, if I don’t turn out to be a magical unicorn and live forever then I am going to die in the knowledge that I at least had a chance to live like I have never lived before. Freed from the tyranny of ambition, of self imposed limits, fear, anxiety, for now at least, work – everything looks different. Because there is genuinely nothing to lose. My appreciation of simple things – making music, food, friendship, sisterhood especially, kindness, a sunny day, an unexpected hug, a sunrise, a sunset, is amplified by 1000. It’s a hell of a way to go about letting go but these few months have been strangely transformative. Partly because society respectfully makes space for you to enjoy your time and facilitates that when you have an incurable diagnosis. I am extremely fortunate in that respect. But I have come to feel like I could trick death simply by living outrageously well. Come and get me if you dare! I’ll dance away before you can catch me. If we could all live like we knew it was finite, and like we cared about every single minute, life would be richer. This Bank Holiday I urge you to live like there genuinely might be no tomorrow. You seriously never know what’s round the corner. I recommend it.