All the Small Things

I’ve entered a quiet hole. Maybe the first time things have slowed down since the tornado hit as the new year began. Is it really nearly June? Where did the year ago? You’d think when you stop working that it is all lying down and Netflix but secondary cancer is like being caught in the revolving door of A&E and everything is urgent. This past week has been a welcome break from hospitals but I’ve still had consultants on the phone and other medical events but by Saturday I can’t even remember what. Even small outings exhaust me. A friend for lunch here, a friend’s daughter for coffee there, and. in between, clearing my father in law’s flat as he has finally gone into a home. It’s tiring and when I say tired I mean like hitting a brick wall at 100mph tired, but in slow motion. I have to keep making my excuses and leaving in the middle of things with phrases that make me sound like something out of an 18th century novel. ‘I’m afraid I’m feeling rather faint…’

I made it to my jazz class today in spite of a strong urge to stay pinned to my sofa catching up on series 2 of Colin from Accounts. The tumours on my lung are deepening my voice or maybe it’s just tired vocal chords. Some days it sounds wobbly. Some days I feel like Billie Holiday but I may end up sounding like one of Bart Simpson’s aunts smoking 50 a day. I sing with my soul at the moment. My guts spill out on the floor. It’s good for me.

My family went to Scotland without me yesterday. It sounds cruel but it was my choice. Or no choice really. I had four or five scans and appointments lined up for this week and then the doctor cancelled half of them out of mercy. I’ve realised it’s a bit of a negotiation. I took my eldest up to Nottingham yesterday for the National Schools Rowing competition. We stayed overnight in a hotel with pool and spa and went for a nice meal. Small trips like this seem luxurious and make me feel normal. And it’s rare I get time with one child having three. I got over my shyness and resistance to joining in with the other parents and got stuck in to the jolly atmosphere of ferrying food to athletes, sitting by the river in camping chairs and chatting. I yelled so loud and revealed my embarrassing Tiger Mom tendencies by screaming at top volume things like ‘You can still win it! The other crew are looking tired!!! Look at them flagging!!! They’re never going to make it!! Move your ass!!!’ I’m not sure it’s the done thing in rowing to launch psychological warfare on passing competitor crews but it made me laugh. Especially for the looks from the large posh enclosures with their own giant TV screens and catering. Mind you Bryanston’s servants did hand out leftover posh sausage rolls so they’re alright. I’m literally anyone’s for a high quality sausage roll. Brentford Boat Crew had it sorted with our smart little gazebo, colourful camping chairs and mats and tables creaking with homemade grub and inappropriate snacks. Every child that walked by envied our selection. It looked somewhere between a six year old kids party and a holiday camp. I was proud that we were one of the few really diverse crews with parents to match. I caught too much sun and exhausted myself marching up and down the towpath to go to the portaloos and buy coffee. Today I look like I’ve had an acid peel. Even a simple thing like this knocks my balance and I will be in bed most of the weekend with only brief journeys out. But it was worth it.

It feels strange being back in London alone. I’m grateful for the silence and am avoiding company. Time to process. Maybe to look down for once and try to see my situation as it is. I can’t let that train of thought run away though. I have to admit that in reflective moments I still have a certain amount of disbelief around suddenly having seven tumours. And to still be walking and talking and laughing and planning. But despite the profound tiredness and limited capacity I’m doing ok. I’m cheerful but recalibrating every outing around the limits imposed by my medication (I find it hard to admit it’s the cancer). I feel I need to be near a bed, a loo and a hospital and I get a bit anxious if I’m not. But normal life is possible with careful planning. I don’t want to turn into a weird sick person who stays at home all the time for fear of life happening. And I try to balance medical paranoia and a sensible approach. I suspect I’ll have to present myself to A&E today as I have a throat infection setting in and it’s the first sign of neutropenia which can be dangerous. Damn. Not how I planned to spend the bank holiday weekend.

I’m trying to refocus my reflective mood on feeling grateful for friends and random acts of kindness. I’ve been enjoying putting my energy into helping young people I meet. It’s hard to be twenty something these days. I’m also writing a mental thank you list. Not like a gratitude diary but actually just a record of all the kind things people have done for me since my diagnosis in January. So that I never forget. I hope I remember to be so kind to someone else when they need it. And to never be that person that stays away. Some will have to remain anonymous for reasons that will become apparent. But they really do make a massive difference, the small things.

Shall I work backwards or forwards? I would like to state for the record that the ongoing love and kindness of family is a given and certainly not one I take for granted but I am choosing not to include it here. As my immediate family don’t read the blog I honour that by trying not to write about them other than in passing.

So let’s go back to the moment of diagnosis. January 30th. I am grateful for the annoyingly handsome 20 something lung consultant at St Mary’s who managed to say ‘sorry’ so many different ways, was honest when I asked about prognosis and waited patiently while I processed and asked the same questions over and over when he had no answers to give me. Who advised me to make a formal complaint when my biopsy results were taking too long even though it would result in more work for him. And for treating me like an intelligent adult female who needed information.

To Mark, the nurse from the Phillipines in the lung department, for saying ‘I’m sorry’ in six more ways and being honest and human about why the biopsy couldn’t happen immediately (because other patients had chomped down on the tiny cameras they needed and broken them). And for then finding one at the other end of the country and making it happen. Involving me in the NHS’s challenges was a good move. Empowering even when the outcome seemed it would be negative.

To all the friends and former colleagues who immediately got in touch even if we hadn’t spoken for years. It carried me through those first few weeks and I felt like you were all holding my hand. It absorbed the shock a bit.

To all my crazy woo woo friends who sent me cures and conflicting nutritional information on instagram and TikTok. I hope I was polite. I did not and still don’t have the bandwidth for all the information and misinformation sent my way so I tend to filter it all out but I genuinely appreciated the thought behind it. Maybe some of it was true. I now eat a lot of broccoli shoots. But I love the hippy sisterhood I have gathered around me. As Lloyd Cole once wrote; ‘I’ll believe in anything if it gets me what I want. Gets me off my knees.’

And to the Charing Cross nurses. All of them. Every damn one I have met that has been kind, gentle, responsive, reassuring, jolly, sympathetic, compassionate. The NHS is fucking golden and I have met a lot more off the chart kindness and care there than in the private sector last time.

To the Gift givers. This will sound grabby but, as a Leo, I think every day should be my birthday. So I have really loved all the flowers, candles, lotions and potions, homecooked meals, frozen meals, cookies, cakes, cards, potplants, books of poetry and so on. Oh man it should always be this way!

Offerers of wonderful things that I have rejected. Lifts (don’t drive to Charing Cross or Paddington ever). Cleaners and other useful services. I probably should have said yes but to allow a cleaner in would require me to tidy up.

Coffee offers I haven’t managed to fulfil yet. So appreciated but when I am not at hospital I get to do about one thing a day and then I generally have something I have to do before I go back to bed. Chatting tires me out so I have had to limit these. All in good time!

To the friend who smuggled things into the country for me for entertainment/pain relief. Legal where you are. Risking imprisonment here. I could have smacked you up for the risk you took you damn fool but it was a beautiful ridiculous gesture and I adore you for it. At least I said NO SIREE to every damn thing you brought in at your own risk. Took it straight to the pharmacy to destroy it. Yup. What were you thinking? Should have made you take it back again. That’ll teach you.

To the kind and infinitely wise friend of my dad’s who took me for a fancy lunch and offered to help should I ever need or want private treatment. You connected me to your powerful network of superbrains and encouraged me to look ahead at what experimental treatments were available. I’d like to keep your offer in mind later but I’m fine for now and my drugs are doing what they’re supposed to. Your offer made me feel supported and safe and it gave me a lot of hope on a very dark day.

To another old friend who offered to pay for very extensive genomic and genetic tests with a view to later treatment should the drugs stop working. Yes to that. Similarly I feel I have an ace up my sleeve and a special pass should it all go pear shaped. This was an amazing thing to do. For me, knowledge is power. Was it ok to say yes? I am bad at accepting help and I had to swallow my pride but it was a no brainer. On Friday a personal phlebotomist and a smartly dressed young man with a degree in biochemistry came to make sure it all went smoothly. He cheerfully answered all my data questions and I discovered my bloods were off to Cambridge and Arizona. It also connected me with this incredible network of philanthropists and people who try to save the world through medical technology, equity of access to information about cancer care and state of the art use of genetic data. Just knowing this is happening makes me feel better. The future of cancer care is personalised. These young medical minds were wonderful to have at my house and we set the world to rights discussing health inequality. I also had a fascinating half hour chat with the MD of the related charity. Cancer Awareness Charity. Look em up.

And a big shout out to the staff in Gail’s who could see I was in trouble last week when I had a funny turn and holed up in their loos to throw up. They were closing and I had run in at the last minute. They looked after me until I could get a cab home. And then when I went in to thank them this week they gave me and my friend free food. Amazing humans.

To the artists on Johnsons Island for being there generally and knowing when I just want to paint. And for understanding when I am too tired to turn up to meetings about our next open studios. What would I do without the community and the place of refuge. And to all the painters for just encouraging me to paint and remember that if I painted it with all my heart people would get that.

To the singers in my life for just encouraging me to sing and go further and not to be afraid of doing all the things I had given up even believing I would do. It’s funny how bold you get when you think your infinite time might be limited. Why did I wait so long to do what I love like I meant it? I’m still terrified. It doesn’t matter how many times I have stood on a stage and sung. To do it solo for 8/9 songs and ask people to come to hear you is a huge challenge for me. Not so much for the singing itself, although that is new type of endeavour with two lung tumours, but for the fact that you have to accept that it is OK to have the ego to invite people and think they might enjoy it.

Hmm who else? To the gentle friends especially my female friends for knowing intuitively when I want to talk about it and when I don’t. For understanding that talking shite or hearing about their families and their love lives is a really great distraction and source of entertainment.

Is that enough thank yous? I’m going to thank myself for getting through another day and another week. For not giving up and not looking down into the abyss. I am standing a bit close to the edge at the moment but I’ll stand there and shout at the sky like an Asian Tiger Mom instead. I rock. Well done me.