4am

Why is it always 3-4am? I wake up feeling like the night must be over. Like it’s time to get up or start thinking. 4am is the most dangerous time to start death googling so I’m writing to you instead Dear Reader. I know everything I need to know right now. Any further lines of inquiry are morbid. Planning adventures, real or ridiculous, is a better practice. Talking it out even better. I like this time of day. I met with a friend of my father’s a while ago who is very successful and who told me he loves this time of day. It is his to read and pray. By 6 he is online with his personal trainer and ready for breakfast at 7. There is a quiet meditative quality about the hour. As we live near the start of the M4 I have a more mundane theory that I wake up because the world wakes up and the sound of the traffic starts to flow. I’ve got used to the sound like the roar of the sea and I miss it slightly when I’m away. A feng shui expert told me that a road that flows near the house is auspicious like a river. Well I’d rather have a river passing by my window but it made me feel better about my very urban condition. But I am meandering.

Yesterday was the first Good Day energy wise since I started my treatment. I have been trying to be patient and kind to myself and not expect too much. I’m sleeping a lot. Probably too much but when the wave of fatigue comes I can’t keep my head above the water. I sleep better in the day. It’s restorative with no nightmares. At night they come. Dreams where I am subject to bloody operations and being hauled around the streets on an operating table. Worse ones where I am back at the BBC or Channel 4 trying to hold three meetings at once, navigating cut throat, bourgeois media power politics and forgetting where I left people with no idea what I’m supposed to be doing (haha – ‘facts’ as my kids would say). 4am is a reality check. And that can be scary.

I requested a callback from the Macmillan Navigator service today. It’s a marvellous thing. You leave your appointment and think of all the questions you meant to ask the minute you walk out the door and realise you weren’t quite taking it all in. So you ring Macmillan and they ask your specialist nurse to call you back. One is assigned to you at ‘I’m sorry’ and stays with you till (oh…Angela it’s 4am don’t go there). Anyway my nurse, Bernie, calls me back and I walk through my symptoms as I have a minor cold and a cough coming on. The weekend has been a bit rough and they said to report it. They are amazed I don’t have a thermometer in the house with three kids but I can tell if they have even a slight temperature by kissing their little heads. In our house we have a routine when someone tells me they may be too ill to go to school. ‘How are you feeling?’ I ask sympathetically. ‘Bad’ ‘Are you dead?’ ‘No’ ‘Then go to school. We have to be dead not to go to school.’ See! Good mothering is simple! Anyway I operate on much the same basis for myself most of the time. I feel bad. Are you dead? No, then get up and do stuff. I realise I need to adjust this slightly at the moment in order not to be dead sooner. So I’ve called the nurse. I tell her the magical unicorn has the trots and she’s been running away with me a bit. She sensibly asks if I’ve actually read the instructions for how to deal with unicorns and it turns out I have not and am instead styling it out. ADHD trait. I did not read the large bound booklet, the front of the pack of pills or listen when the pharmacist counselled me on what to do if the unicorns start to run wild. Read the fucking pack Angela. I ask her about the thing the doctor said about my heart as I wasn’t quite clear why I was having an echocardiogram. Something to do with an inverse T wave on my last ECG but there was some minor physical abnormality I didn’t quite catch. When they scan the shit out of you all sorts of things come to light. On further investigation she tells me two things that come as a surprise and I realise the list of surprises and things they haven’t really landed on me all in one go is quite long. There is something about my heart being at maximum capacity and at the upper range size wise (I take this metaphorically to mean I have a Big Heart ready to burst and she laughs and says not quite) but then tells me she thinks I might be referring to the ‘Right basal linear atelectasis’. My whaaat? I make her spell it out. Oh your partially collapsed lung. Say whaaat?!!!! It’s just small don’t worry. A line in the lung, an area where there isn’t enough blood flow or oxygen that has folded in on itself as a result. Apparently it often happens when there are tumours partially blocking airways or preventing the normal flow of blood. I actually don’t think this was the thing I didn’t quite catch about my heart while I was dealing with being knocked sideways by the news of two new tumours. But this is another thing they haven’t really bothered to go into detail on. My trust is a little low right now but I am starting to realise they only really hit you up with the headline news and concern themselves with clinical pathways and necessary checks and tests. Maybe I don’t need to know it all. On some level I suppose I should be grateful. But I thrive on information and have always been a little paranoid about it being kept from me since I was 17 and my mum got ill. Parents do this and I get why now. I try not to keep things from mine and prefer open communication but I also try not to overwhelm then with all the news all the time. Nevertheless I’d always prefer to have the full picture. Bernie the nurse reassures there is a lot going on but not to worry and they are keeping an eye on it all and just being cautious. I request all my scan notes next time I come in. So that me and my friend ChatGPT can pour over them and come to alarmist conclusions and generate more questions. I realise that the nurses and the doctors may be finding me a bit much and that my more annoying ADHD traits come into full flow here. These habits have got me somewhere in life as I have a questioning nature. But I appreciate it can come across as overwhelming for others and a bit bullying when I go into interrogation mode, so I decide to rest it and just go look up my ‘Right basal linear atelectasis’ which chatgpt assures me is not so serious yet. Just a little thing that goes with lung tumours. It’s a bit exhausting though.

Anyway the sun made it all feel better today and I sat outside a cafe and wrote. I met half of Brentford and had some nice chats. I like the small village vibe. Being part of Johnsons Island has brought me into contact with a lot of people locally. Before Covid it was not the case. A lot of local people I am on social media with are reading my blog so conversations with some I only know in passing are strangely intimate as they know everything. It’s quite reassuring. I made it to my studio and started prepping a large canvas. I like to gesso. You just get to take large dollops of sloppy white paint and smooth it on to improve the base before you get to work. I recommend it as a therapeutic activity. I tidied and emptied and threw away and started looking ahead to our open studios end of June for Canalfest. I don’t plan to sell much but it’d be nice to have some new work I’m proud of. Everything is half finished at the moment and I usually make a few grand selling simple things. I like it because it clears the studio. I’m unprecious about my work when it’s done. I’ve had my fun. Unfortunately it means I never collect enough paintings to have a solo show as it sells quite quickly if it’s any good. The bigger I paint the easier it goes. And blue paintings sell fast and I happen to be addicted to blue green. I describe myself as a semi abstract landscape artist but it’s really because I can’t actually paint very well and just have a feeling for shape and colour that seems to communicate emotion. That’s good enough for me but one day I’d like to learn to paint people and things. Big dreams eh?

I’m relieved to talk to my boss today and push back my inaugural lecture as Professor which was looming in June. It’s an honorific really and a celebration but I want it to be good. I’d started to obsessively return to my laptop every time I had a spare minute to try and write it but my concentration just isn’t there. I’ve done plenty of half hour versions of this talk before but when you only have the one thing you have to do it starts to loom large and, as James noticed, I have been spending a lot of time in my head with this and it’s started to ‘jump the shark’ and involve game show formats with gen AI and celebrities and all sorts. What the fuck is wrong with me and why can’t I relax like a normal person when given the chance hmm? A lifetime of workaholism doesn’t shake off so easily. With the PhD done I have to find other ways to keep my mind busy so we agreed I’d do the work by mid June ready for a revised September date and then go off properly on sick leave. It was making me anxious to think about a room of 250 people there just for me and particularly in the two month period where I am supposed to be being careful. But it’s also not like me to back down from a challenge. For these two months I will be in the hospital every week or two for blood tests checking the neutrophil or white blood cell count. Doing ECGs and bone infusions and hormone blasting horse tranquilisers and godknowswhatelse. And when I am not in the hospital I am supposed to be trying to avoid small infections that might put me in hospital. This one seemed like too big and unnecessary a risk. With dangerous mass hugging potential. And quite a high likelihood of landing in hospital just at the wrong moment. Once you’re in they wait for your white blood cell count to rise and that can be 7-10 days. I say that I don’t want to let people down and he kindly reassures me this bit matters the least and the date is arbitrary but I worry about that. I’d also feel I need to make a hat or T-shirt that says No Hugs but that’s too sad. I’m a hugger. A veritable koala. And I have terrible FOMO and would find it impossible to leave early or avoid anything. Only avoiding drink is proving successful so far. First time in years although I dialled down considerably after last time, so on some level I am healthier than usual.

I finally return home from writing and painting late afternoon, proud of my napless day, to find that my friend Aubrie had made and delivered dinner for the whole family – a Mexican feast! Food never tastes so good when you haven’t cooked it. And Kate comes round with anti inflammatory turmeric frozen ice bombs to put in water and homemade humous and all sorts of wonders and we sit in the garden and shoot the breeze. I feel very fortunate to have such kind and considerate friends nearby. And the sun sets on a perfectly pleasanr day (with only a little trouble from trotting unicorns and partially collapsed lungs). Apart from that I’m Fine. 🙂