A sad update

I’m going to have to take a break from Sick Note for the worst possible reason: My mum’s lung cancer is back, and it’s very serious.

If you’ve been following my work for some time, you might have read my post about Mum’s cancer for Splinter. She was diagnosed in 2018, and soon started receiving immunotherapy, which worked very well for quite a long time. We had some great visits, at home in England and in DC. That fall, she made my tiny wedding in DC so wonderful. She walked miles a week in the countryside around my childhood home, keeping her sane after lockdown started. She seemed quite fit and well, except for lingering cancer cells in her lymph nodes; the original tumor in her lung was gone. I found myself harboring a disgraceful amount of hope. I thought she might be a Jimmy Carter type (in terms of cancer, not public opinion).

Last summer, she had a pulmonary embolism (a blood clot that travels to the lungs), which was very scary and painful for her. After she got out of the hospital, though, she recovered well again. I visited in August (after a two-week isolation period in a cottage in a nearby village) and we took lovely long walks together, in the rolling fields and woods and streams, and she did great. We made an incredible chocolate cake for her birthday. Again, I let myself slip back into selfish optimism.

More recently, something changed. A scan in December showed “ground glass” opacity in her lungs, likely due to cancer; another in February showed that this opacity grown a little, but the lymph nodes hadn’t grown much, so we hoped it wasn’t cancer. Her oncologist thought it could be sarcoidosis. She went for a biospy of the lung tissue to find out. While we awaited the results, she started getting more breathless again, and then about ten days ago, she got so breathless in the night that she had to be taken to hospital in an ambulance. She was in hospital until this past Monday, where they treated her for an infection and inflammation. During her stay, we found out that it is cancer—adenocarcinoma, technically. She’s now home with us, and is reasonably comfortable but finding breathing quite difficult (though her O2 sats are good, mercifully), and she needs constant oxygen.

I flew home last Friday; luckily, both my parents are vaccinated, so I’m completing my mandatory 10-day quarantine at home with them. I’m spending my days sitting with her in bed, watching Claire Saffitz’s new baking videos, ordering groceries, and enjoying the company of our old cat Spencer, who sits like a guard at the end of the bed. (He just went blind in his remaining eye, too. Just try to tell me God is real, I dare you.) All we have left to do now is wait and see if she recovers enough to make chemotherapy an option, and to be together.

I’m livid that this is happening, and all so fast. I’m livid that we’re in a pandemic, one that could have been controlled better, so we couldn’t go to see her in hospital. I’m livid that the care she received in our local hospital, the one she fought throughout my childhood to save from neoliberal destruction, was frankly pretty shit. (She joked the other day, “I shouldn’t have bothered.”) Her doctors and nurses didn’t do a good job of explaining what was happening, or the decisions they were taking about her treatment. They spent a long time deliberately reducing the amount of oxygen she was receiving below what she needed, for reasons I still don’t understand. One nurse left the windows open when it was 32 degrees outside.

I am livid and baffled that she stopped receiving immunotherapy after two years, which is the NICE protocol (due apparently to a lack of evidence for benefit beyond two years), and that there was no option to go around that protocol even though it was working very well and also, couldn’t you just fucking give it to her anyway? I am livid that immunotherapy drugs like Keytruda are so expensive ($7,211 a dose, though the NHS pays less), which influences decisions like that. I am livid that anyone in the world has to go through what we’re going through right now, and in unimaginably worse circumstances—my stepfather is a retired doctor who worked in the area for decades, we have enough money to do things like flying me home, and we don’t live in the United States of America, where we’d have to think about things like ambulance bills and deductibles.

I am bursting with thoughts. They’re awful, and I’d love to put them in a sack and drown them in the river, but it doesn’t work like that; they’re just there in me, like my bones. It’s agony. So maybe sometimes over the next few weeks I’ll share some of them with you, because I’m selfish and that might help me, and maybe they’ll be worth reading. After all, Sick Note is all about personal experiences with healthcare, and now I’m getting a hundred of those every day.

But I also don’t think that I’ll be able to commit to keeping even my paltry twice-a-week posting schedule, and all the work that entails—interviewing people, transcribing, fact-checking, researching and writing posts—while I’m here with Mum. We have no idea what the next few weeks are going to be like; we truly have to take it day by day, hour by hour. It’s obviously extra work, too—extra cooking, cleaning, laundry, personal care. But the real problem for me is the emotional weight. I can’t tell you how much each cough or labored breath makes my stomach drop, or how blissful it is when she’s laughing and chatting. The night she came home from hospital, I kept mistaking the regular ‘thud’ of her oxygen concentrator for her coughing, and I couldn’t sleep. I just know I want to be with her all the time, doing exactly whatever it is that she wants and needs, and nothing else. If it isn’t obvious, I love my mum more than I know what to do with, and to say we’re ‘close’ undersells the bond we have. I don’t know if there’s been a day where we haven’t WhatsApp chatted each other in the past five years. I send her pictures of my iced coffees, my outfits, blossom and beautiful buildings in evening light that I think she’d like. She sends me pictures of her walks, Spencer on the garden bench, and her outfits too (always more stylish than mine).

So my plan is to post this today, and see how things are next week. It’s an arbitrary deadline but we’re in the dark here, and there’s no way for me to make sensible decisions. If I decide I need time off, I’ll let you know, and I’ll pause billing so that monthly subscribers won’t get charged while I’m off and yearly subscribers will get their subscriptions extended. (If you want to unsubscribe, that’s fine too!) I feel so strongly that Sick Note is a good and useful project, but I can’t say it’s easy for me to make room to care a lot about anything except Mum right now.

I hope I’ll be able to write and tell you about how things are going. Please feel free to keep sending me healthcare stories, and I’ll pick them up when I get back to it. If they’re urgent, let me know and I’ll try to suggest another reporter who might be interested. Thanks for your continued support of Sick Note, whether that’s subscribing, sharing it with friends, or just reading it every now and then.