Funk

Why does it get harder to write as this goes on? I have so much I want to say and quite a lot of things I can’t say as the future works itself out. Many of the things I want to say when I start to write aren’t positive. I have been swept up in a whirl of fabulous activity in November, like I’d been deferring everything I wanted to do to some date in late 2025 when I figured I’d have the energy to do them. And I did find the energy from somewhere, but it’s been a lot.

November started with running a creative cancer retreat for women with secondaries at our wellness centre on the family bonsai ‘farm’ (it’s a nursery, I don’t know why I like to call it a farm. It amuses me somehow. Like I’m in the Waltons). Next was a weekend in Copenhagen. The week after was the jazz gig that I’ve been building up to all year at the Pheasantry, a beautiful club on the Kings Road. Then, unexpectedly, I found myself being filmed for a national charity for a campaign that will come out in January. It’s been a whirlwind.

Before I get into the metaphorical, existential funk let’s talk about the actual, joyous funk. The much longed for jazz gig that only existed as an intention on January 1st before my diagnosis, actually happened and it was my second gig so I have doubled down on the bucket list. You could call it manifesting or you could call it getting the fuck on with things you want to do. Nothing like a terminal diagnosis to give you a good healthy kick in the butt. What would yours be? My advice? Get the fuck on with it. Then do it again. End of. What’s your excuse?

The gig itself was everything I hoped it would be, a great musical and life experience and a confidence challenge. Not many things scare me but this was some sort of frontier for me. I’m pretty confident in front of a crowd but keeping it together at a reasonable standard with a four musicians and 100 people. It took a lot of work to prepare for. You’d think you could just stand up and sing a few songs, and some more experienced people than me can do this but I put in the hours. Rehearsed with my wonderful teacher Linley Weir in her glamorous log cabin in Chessington, rehearsed by myself till I was exhausted in my kitchen with Moises app, amp and mic and painful video function so you can hear and see just how bad you are, trooped over to Brixton to practice with the pianist and get my jazz charts and the form completely right. Jazz is well planned chaos. It is slightly excruciating for me to play with real jazz musicians. I have real imposter syndrome in this context and for a reason. I’ve sung for years – jazz, operas, major choral works and I can read the dots, but I’ve not had a formal musical education. I find worming with musicians humbling in a very real practical sense and find it best to defer to their superior knowledge and take their advice. I often have a slightly over ambitious idea taken from a version of a song I’ve heard and got addicted to which is quite different to the chord chart I have and needs rearranging. There is a balance between seeing through your idea to get what you want and allowing musicians to do their thing. I loved the whole process and it was totally life affirming. The band were incredibly encouraging and supportive. I briefly told the story of my year with cancer on stage – a year that started with the news that I had incurable cancer and probably hadn’t got long left to live. By June they’d found eight tumours by the time they finished scanning me. By July there was no evidence of cancer. All the tumours had gone. Try getting your head round that. I told the audience that Dr Jazz had healed me (‘that and the meds, but please let me introduce you to my team of able physicians…on piano Dr John Crawford etc etc). I’m not sure it’s anybody’s idea of a good time to hear about my cancer on a Saturday night over a pizza but it’s part of my story and how I ended up there and I try to keep it light. Plus it makes Feeling Good as a final number resonate all the more. A lady came up to me in the loo and thanked me after, told me she was recovering from breast cancer, getting ready for her reconstruction. We talked about the things she wants to do with her life now. So it was worth it just for that.

The gig went pretty well with only a few mistakes but that’s live music for you I guess. No looking back. I took two novel steps to defend against my usual regret this time. 1) Wearing a loose fitting green velvet suit so I felt comfortable and didn’t spend weeks afterwards regretting a tight dress and bemoaning my big belly. I mean why should I squeeze into dresses at my age? 2) I got the words muddled on one song and when I realised I had looped the wrong line twice I just tried to hide my panic, keep smiling and get back on track. Afterwards I asked at least twenty people if they’d noticed. They had not. So I could strike that one off the overcritical, self flagellating post-gig analysis list too. It was a supportive crowd. Not just my family and friends this time but maybe about a third of the audience were. The others were either friends and family of the rest of the musicians or the actual ticket buying public. It felt good to stand up with confidence, a lot of planning and rehearsal, and only a little bit of fear and do it. And guess what? I’m going to do it again! Why not? Last time we raised £17000 in one night.

The week after the gig I got to sing again and talk to a film crew about the difference that singing and sound healing has made to my recovery from cancer. I would never claim that this was enough to heal me, that amazing modern medicine wasn’t largely to thank for my miracle, but I have read enough evidence of the benefits of singing and vibrational resonance on the immune system to believe it played a part.

And yet, and yet…around all this glorious activity…I am in a lot of pain on a daily basis. Specifically, I am managing a lot of joint and muscle pain which causes mobility issues and I’m not afraid to say that some days I am in a psychological funk. Well it has been quite the year…would you expect it to be any other way? Making music, making paintings sees off the darkness for a while, or at least, it gives me a degree of self-protection in the evil forest. I like to take the lead from my husband and tell myself that the pain is simply what healing feels like but if I’m honest it’s probably just my shitty, lifesaving forever drugs. There’s the rub. You can resent it all whilst simultaneously acknowledging that it is keeping you on this planet. I try to hunker down in between doing stuff. To plan a daily task, do it, rest. See to the kids, rest. To manage my extremities in a see-saw like rhythm. I get told off by the hospital sometimes for going about like a mad person doing things but I have to live. I can’t just sit back quietly. Just hang out at home being quiet. That might sound nice to some people. It doesn’t suit me. I want to be out in the world and I do miss the company. Some days it seems simple and I just address the day. Attempt to do something meaningful, purposeful or pleasurable. Paint. Write. Sing. Walk. One step at a time. One foot in front of the other. But sometimes it’s easier just to go back to bed. I am generally uneasy with this ‘ease’ borne out of my dis-ease. What do I do now? I mean there are so many things I could do, but which ones?

It’s coming up to a year since I found out I had a ‘small nodule’ on my lung. January 6th. I’d muddled through a magical cross country skiing holiday in Lapland worrying about possible heart trouble. I’d been having trouble breathing and knew I was heading into a CT angiogram the day after our return. After I took a 360 degree tumble down a fast section of the tracks (which I now realise was much more dangerous than I knew at the time with all the hip and spinal tumours) I spent time in our little cabin in the woods finishing my PhD corrections from the proofreader and planning the year ahead. I had a strong instinct that it was time to do things I’d been putting off. Finally put the PhD to bed. Produce and sing in my own jazz gig. I was in a rush. Sometimes the body knows before the mind has registered what’s happening. Or what’s about to happen.

We saw the New Year in under the the swirling majesty of the northern lights. So profound and humbling. It stopped us in our tracks out by the lake in the freezing darkness. I was so glad to have shared this longed for experience with the whole family. A lifelong dream and so spectacular and huge. The movement feels so organic… not random but like there is real agency at work. I see these shapes in my dreams and when I meditate. We are so connected to the earth and its movements. Its energies and its rhythms. More than we know. Someone let off what was probably a giant firework in the middle of nature’s lightshow and it looked like a tiny damp sparkler by comparison.

For the year preceding I’d been trying to take matters into my own hands as I knew something wasn’t right. I remember telling one of my oldest friends, Sophie, over dinner that I felt like I had ‘fucking cancer’ again. It’s not exactly that my GP didn’t listen. I’d taken myself for womb scans privately as I’d had an operation the year before and had some pain. I was working my way up the body. Losing iron. Feeling bad. A private consultant ordered detailed bloods but suggested that I had them on the NHS because they were expensive. I wasted months trying to get these done as appointments got cancelled, being told these weren’t doable on the NHS and then they were and then they missed a couple and then they were inconclusive and then and then. It did take a long time to get appointments or for them to believe my instinct that something wasn’t right. Not until I asserted myself and said I was having trouble breathing that I was sent to the hospital. I was still waiting for rheumatology and allergy appointments. By the time I got them I’d had my diagnosis. It took 5 minutes for them to tell me it was ‘just the cancer’. Simple once you know what’s wrong. It’s very easy for women my age to get put off persisting with their attempts to get a diagnosis. You feel bad, you’re told it might be low iron, doctors tend to err towards the gaslighting of menopause once they can find nothing specific. Like a sort of Greek approach to hysteria. Was I not clear, assertive or articulate enough? I’m not known for my reticence.

Am I angry about this, retrospectively? Yes and no. But in a forward facing way. I’ll never wait politely again. I’ll campaign personally and publicly. I try never to look back with regret. Only move forward. Tell someone else not to wait. Not to accept ‘it’s probably just your age’. Dear Ladies. Please tell any doctor who says this to you to Fuck Off. And then discuss what tests they are going to recommend to be sure their lazy arse fob off is correct. The bit that I don’t understand is why I wasn’t sent for a bone scan. I’d had cancer before. I’d been scanned for secondaries before. I asked if this would be a sensible course of action given my history. But to be fair I think what I was feeling in my body did not yet match with the evidence that was just starting to show up in my bloods.

Am I angry generally? A bit. I try not to dwell in the bubbling soup of anger but it surfaces in funny ways on a weekly basis. A post traumatic reaction I think. I remember this from last time and from the year after my twins were born prematurely. When the immediate danger has passed, that’s when you really get dragged slowly over the rails. I’ll find myself having a BIG reaction to a small thing. Righteous anger. And before I’ve checked myself I’ve engaged my full intellectual powers in an angry take down. If you meet me on these days I recommend getting out of the way. Sometimes this is just a negative spiral in my head. Sometimes I write it in an email. Sometimes some poor person crosses me at just the wrong moment. Generally I have learnt not to send the emails. Or to sit on them for a day. Or to send it to someone I trust and ask them if this is a good thing to send. If you are the lucky recipient of one of my angry drafts, know that I am sending it to you because deep down I know it is poisoned by trauma and I want you to tell me how to make it kinder. Thank you to the most recent lucky recipients who have gently pointed out what is counter productive. Sometimes it’s me speaking. Sometimes it’s general anger that I have not taken time to acknowledge.

We think we will mellow with age but I think I’ve just stopped filtering. I’m the sort of cook who loves fire. The quick flame of the wok or the grill. I’ve learnt to…simmer. But I am largely too impatient to wait for soggy vegetables. Give me a flamethrower any day.

You may have guessed by the monthly post pattern I have fallen into that today is hospital day. I have got into a rhythm. I look forward to seeing the nurses and they remember me. I come early for bloods and they turn them around by lunchtime for me. I go to my favourite sushi place or get an English breakfast from the excellent greasy spoon nearby. I fulfil my ‘positive association’ brief for the kids and go to the pan-Asian supermarket near Hammersmith and buy beef for Korean bulgogi and exotic mochi. Sometimes crazy sake plum flavoured KitKats, the sillier the better. The kids actually get excited when I have a hospital day because the evening is always an Asian feast night. As Christmas approaches it’s hard not to feel the change. My New Year’s resolutions won’t be quite the same as other people’s this year I imagine but they should perhaps be the ones we all should adopt.

Stay alive. Be kind and gentle with yourself and others. Put energy into things and people that deserve it. Save it for things that matter. And try not to worry too much. That’s about it really.

Have a Happy Christmas. Thanks for sticking with me this year. This post should take my blog past 20,000 views. I appreciate you being here. It’s really made a difference. And if you are also wrestling with the cancer beast or some other ailment, physical or psychological, hang on to the dream. Sometimes miracles do happen. Sometimes it all works out ok, you know.

Not perfect perhaps.

But ok.