Joy/Pain

Hello. It’s been a while. I’d say sorry but I’ve been busy living. So ‘sorry not sorry’ as the kids say. These past 12 days, since my news that the cancer has gone into remission, have been an extraordinary heady mix of joy and pain. This is life in technicolour, the full spectrum. Trauma and living through it. The life that springs out of it. I’ve been motoring along with this slightly crazed butterfly energy quickly flitting from one thing to another trying to squeeze the life out of life. It’s a bit like trying to get the last bit of toothpaste out of the tube except then you discover an untapped pocket and it squirts you in the eye. I risk overtiring myself, because non active cancer aside, I am still very much in recovery and coping with all the side effects of the medication. I am, undoubtedly, overspent.

In midst of this maelstrom of emotions there is, of course, joy.

I have used music to carry me through the last few months. Clung to my art and modes of self expression like life rafts. Focusing on singing and making music with others has given me a space where I can forget completely about other things. I am focused on the puzzle. The next note. The timing, The breathing. It’s almost impossible to sing well and not breathe properly. It’s freed me from the shallow breathing I had adapted to with two tumours on my lung. It’s made me slow my breathing down, breathe deeper and release emotion through the songs. Every song whether it’s fast and syncopated or slow and sentimental has given me a form of wordless expression that has been more powerful than therapy. I’ve done a lot of different types of therapy in my life, I believe in its value but this time I have not wanted to talk about it. I did two free sessions with MacMillan but found myself ranting. This has been my therapy (thanks dear readers you can send me the bill later) and singing it out.

The musicians that I met have been a big part of that. I’ve really enjoyed the rehearsal process although I appreciate it was hard for them to find the time as they are all busy performing and teaching and not used to someone as needy (or rather as much in need of rehearsal) as me. I’ve been happy to pay for the rehearsal time because singing with jazz musicians is an education in itself. Caroline the pianist is a beautiful soul and a wonderful mix of welcome directness and sensitivity. Her lovely partner Paul is the bassist and joined us for a couple of rehearsals and is fascinating in the mix. Their expert musicianship and partnership is wonderful to watch and their gentle awareness of what I need from them as an amateur is touching. I don’t always understand their technical musical chat as they figure a thing out (or figure out what the hell I am talking about or trying to do) but I learn just from being around it. Having not been formally trained in music I find this a heady sort of thing. I have sung in choirs and ensembles since I was very young and have never stopped singing entirely but I only began to learn the piano aged 40 and have fallen off and dropped out many times. But I have learnt to sight read to a reasonable level from singing choral works and operas. I wish I understood more about harmonics. Jazz musicianship is something else, a thing of feeling with some rules and a strict awareness of timing in order to not be constrained by either. I am trying to learn to trust my ear and not crash in on solos. coming in at the right time is still like jumping in on a game of skipping in the playground for me and I often fall on my face but I am learning not to mind. In live music you have to have the cheerfulness to just get up immediately and go ‘oh well’ and style it out. Caroline greets my mistakes with a big grin so I know I’ve made one but can pick up as she adapts to my fuck ups!

The day of our much anticipated gig at the Bulls Head in Barnes finally arrived on Thursday. I had nearly bored my family to death with the build up. Frankly I have no work to do so I have been fairly obsessive with lyric learning and practice, fundraising and organising things between hospital appointments. It was a little bit more work than I’d anticipated but worth it. I spent mornings on repeat with the brilliant app Moises which lets you separate out vocal tracks, change key and tempo and singalong. I’ve been practicing mic technique at home in front of the mirror and giving my neighbour Nicki spontaneous concerts through the wall whether she likes it or not. In the heat the rest of the street has probably put up with quite a lot too with the windows open. Two 45 minute sets is 17 or so songs. Quite a lot from a standing start and for someone used to singing one or two numbers at any opportunity. This was a Big Sing and I was worried my lungs would let me down for although the soft tissue tumours are GONE (really, this is still amazing. Gone?) there is still something inflammatory going on because I choke after about three songs. We planned to rotate singers to get around this so my friend Liane would do a couple and then I’d return. I invited two other formidable women as guest singers too. Three women whose capacity to express emotion floors me every time. It was simply a pleasure to sit back and listen and feel the hairs raise on my neck. The human voice is a powerful thing. We find so much emotional truth and empathy when we listen to a singer we like, and even ones we don’t. In our jazz performance class there is a range of talent and expression and everyone’s voice is unique.

I was sober but a little high on life and my energy tends to bounce off the walls in these situations. And there were so many friends and family in the room I felt very comfortable on stage but probably swore too much and played it for laughs more than I intended. Pure joy running over. I was having too much fun to take myself too seriously so when I messed up the very first song and started out on the wrong note it didn’t really matter. I’d watched a clip of Adele fuck up the beginning of a song and start again and laugh at herself and took courage from this. When I saw Caroline the pianist trying to transpose an entire song and cover for me as I started too high, looking like she was chewing a wasp, I knew it was time to call it. And it was funny. No one cares and generally audiences are only uncomfortable if you are. The rest went swimmingly. I crashed the odd solo, picked up the wrong end of a verse occasionally and found myself in several places with the wrong lyrics but you can style most things out. Eric the drummer I met two hours before I went on discovered he could nearly scare me off stage with the surprising drums in Fever and the sound check saw me in pieces trying to sing, giggle and cope with my physical reaction. Being in the middle of the noise soup of live music and monitor speakers was nearly overwhelming for this ADHD kid who struggles with noisy situations but also transporting as it came together.

The energy and the love in the room felt incredible. I can’t really describe how it feels to have so many people turn out for you, from work, university days, family and friends from over the years. The venue is the perfect size as you can see most people. I hope to do other gigs but there will never be another one for me like this. It was a very special evening and I want to bottle it. I wore a gold dress and had my hair curled and henna tattoos done all over my arms which make the husband shudder. I probably looked like a Christmas present but who cares. I needed to do it and it felt amazing. We also raised £17000 for MacMillan and St Catherine’s Hospice, from a one night thing. I’m proud of that but also humbled by people’s extraordinary generosity. Many of the people who donated I have never met before and I am astounded by their kindness. And when I closed with ‘Feeling Good’ I really really meant and understood every word of that song. It’s about transformation. And this old world is a new world and a bold world for me. I couldn’t say it better myself.

And yet, in the same breath as this, a friend is coping with her own shocking news that her cancer is returned. I have been trying to support her and attended a tough appointment as an advocate to listen, help her ask questions and take notes as it almost impossible when you are the one in the seat to manage all your emotions and pay attention too. It was sobering and painful and I will be there for her and her family whenever they need me. It made me remember what is was like to be in that room again. The room with news you do not want to hear is only ever a bad scan away. Switching seats has also made me realise how tough it has been for everyone else to hear my news and how much pain we take on for others. It’s just human but also takes courage. Coping with your own emotions in that emergency situation is one thing. Other people’s sorrow is quite another. Harder almost. I found I was able to focus only on the next step and, after a while, not to think too much about the bigger picture. But it’s impossible not to. Your mind races from non acceptance to horror and playing out worst case scenarios and back again. It’s fucking relentless. But when we hear news for someone we care about we also have less control than if it is our own.

So I guess what I am saying is I am only just starting to process what has happened in the last six months. Friends have carried me. Watching the doctors’ gentle paced way of giving the worst news. The nurses who carry you from the journey out of there to next steps and all the wraparound care. The NHS and the medical profession at its best is amazingly patient centred and humane and I admire their craft every time I see them now. The system when it works and when it is at its very best in cancer care weaves a river of support that carries you from one end to the other. You can fall off for sure and you have to mind the gaps but I am full of admiration for the humans that make this work.

I find myself unexpectedly moved to tears at the slightest thing at the moment. I’ll be making tea in the morning and I’ll think about something and cry. Loud noises and bright lights bug me. I remember this from last time. It’s a classic post traumatic symptom and it passes. I spend a lot of time trying to fix my face before the kids come in. I’ve been very straight with them about medical developments but probably tried to shelter them from the emotional impact so we can carry on a relatively normal existence laughing and joking. As a result they probably respond to my news on the surface level I expect as I report health events like a science digest and they follow my lead. But these are intelligent kids with deep emotions who are, I expect, managing their emotions around me in just the same way.

Tomorrow my twins turn 13. It was a rocky start this time thirteen years ago as they were born at 28 weeks. There were 17 people in the delivery room. A team for each twin and another intensive care team for each. We are accustomed to medical drama in our family and rolling with the punches. The process of going through the NICU with two babies on the brink of life and death never leaves you. The song I loved performing the most at the gig was Letter to My Thirteen Year Old Self by Laufey. I try to sing with the tenderness of a mother. The voice with which one should always treat oneself. That they are healthy, strong and unimpaired is a miracle in itself and we should never overlook the times when things work out against all the odds. They are miracles but perhaps we also have a misplaced faith in averages. You have to always believe you are the exception.

I approach my own joy with caution though. It’s a very strange thing to have to mitigate this feeling of reprieve. I want to run into the street and shout and dance and twirl around lampposts like I’m Fred Astaire but every time I get the urge, the thought occurs that a brick might land on my head or a bolt of lightning might strike me down. The doctors like to reinforce this. I spoke to my consultant on Tuesday who was pragmatic as ever. I had hoped to see her in person so I could say ‘I told you so. I am a unicorn see?’. On the phone she was measured in her congratulations. The drugs are still hard on the liver. We still need to monitor you carefully as you can still become neutropenic. There is still risk. There are still all the same side effects. The bones are healing and can make a good recovery but you have six sites and you are still at risk if you fall. Can I ski or mountain bike I ask and she tells me I have to make that judgement myself. At my age I could break a hip anyway. And then the killer line. She says ‘This is a fantastic outcome Angela and you should take the win, but the psychological battle that most women face now is not knowing when it might come back. That’s the tough part now. And it does come back for some but many of our ladies can go on like this for several years. For years.’

The average is 2.5 years on these drugs before it comes back. But I just said I don’t believe in averages. I’m not average.

‘How about forever?’ I want to say…

How about forever?