A Trial—though is it the right one?

And to give you a break from cancer/me, news on how creative writing is helping Ukrainians

View from my hotel window

I left you on a bit of a cliffhanger a few days ago. Maybe yesterday. Was it yesterday? How is that possible? I feel like years have passed. That’s travel for you. It expands time.

Tuesday morning, after a holiday weekend here in France (another one!), I rang my Parisienne oncologist’s secretary to make sure we were meeting by phone, which is what she said last week. But she said no, you need to be here in person. Ah, I said. I need to go. I have to buy a train ticket.

Tim got me on a train that afternoon, and off to Paris I went. Nervous as heck. I didn’t know what to expect from the appointment, and I have been increasingly worried about how little time I have to find a trial before the progression of my cancer disqualifies me by requiring immediate intervention. I’ve been struggling to eat, had severe nausea, and it’s painful to sleep on one side. So I fret.

I had found a last-minute hotel room near the Gare de Lyon, and the man at the front desk, Richard, was so warm and welcoming I felt immediately calmed. He told me that there was fruit and chocolate cake in the lobby if I wanted any, and that there was every kind of coffee and tea available. I lucked out with that reservation!

As I walked out in search of dinner, I was abruptly struck by silence of what is a very busy neighborhood. I thought perhaps I had lost my hearing or the sounds of the city had somehow been muted. I stopped on the sidewalk and turned in circles, listening. But the cars and taxis slid silently by. Almost every vehicle was electric, I realized. It was astonishing, the peace this created in the streets. I suddenly saw the possibility of cities without honking and exhaust and loud motors. It was bliss.

I settled into a little creperie next to the hotel, where I read Niamh Campbell’s novel This Happy and people-watched. Everyone there was so kind, to me and to others. The waitress noticed that one woman had been waiting a very long time for her friend to arrive, and brought her a little bowl of nuts she had mixed herself. They weren’t on the menu. It was just a thoughtful thing to do and it touched me. She was also attentive to the two elderly women sitting next to me (and whom I aspire to be one day), who were busy discussing the price of a specific perfume, which I thought was the most Parisien conversation ever.

I didn’t sleep much and was awake before 6 a.m. I drank about six cups of coffee in the lobby—where Richard was still working. Haven’t you slept? I asked. “No. But soon,” he said.

At the hospital, I was the first to be seen. I was weighed and measured in various ways and interviewed and prodded by an intern before Dr. L came in to talk with me.

“So because research is changing all the time,” she began. “The study I brought you here for has closed.” Oh no! I said, crestfallen. “But I have another one for you. It’s a different one.” It’s a two-part study. It’s a T-Cell engagement study that forces the T-cells to engage with the cancer cells to fight them. This is combined with my old friends carboplatin and taxol. At the mention of those drugs, I nearly burst into tears. I never want those drugs again. The nerve pain, the severe nausea, the ice packs, the anemia, the despair. I only just got my eyelashes back. Do you know how much it sucks not to have the protection of your eyelashes? Everything gets in your eyes. Everything.

And yet. Here we are. There are no other options right now and no one seems to think I will make it to August without doing something. So. I signed all the permission forms without reading them. It’s a stage 1-2 study, which is not desirable. Stage 3 studies are much more hopeful. So I left feeling a strange mixture of devastation and hope. I just can’t bear the thought of more taxol and carboplatin. I can’t bear it. Worse, it’s every week. Everything is every week. And for the first three weeks I have to stay overnight in the hospital.

“How long is the trial?”

“For as long as it’s working,” she said. Which means indefinitely. She did say that she didn’t think it would ruin my chances of doing another trial with an ADC, but I hear that platinum-based chemo—as well as the fact that this will be my fourth treatment with chemo—would disqualify me, so I don’t know what to think. I think of my friends with different cancers who just went through chemo once and were cured and I am so, so relieved and happy for them and also so unbearably envious I can hardly breathe.

“Is there any housing available for patients?” I asked Dr. Leary. “Since I’ll need to spend so much time here and we don’t have money?”

“Yes. There are hotels. And they are free for patients.”

“They’re free?”

“One of the great things about French healthcare,” Dr. Leary said. “Anyone in a trial gets free lodging.”

This was so nice that again I was nearly in tears. Not to have to worry about the cost! Amazing. I was so awed that I forgot to ask about the cost of the trains, which are not cheap if I am coming to Paris every week. All that travel! So much! Next time I will ask. Also, the lodging might just be for the night before treatment, not for the night after, or for the days in between treatments I might decide to stay in Paris to save myself the constant travel.

I spent the rest of the day having lunch with the Parisien author for whom I am working, and then visiting a doctor friend of his, who talked with me about trying to reduce acidity in my diet and a few other useful things. And I managed to squeeze in a visit to my favorite gluten-free bakery to pick up a bagel sandwich for dinner.

Back at the hotel, I picked up my suitcase and sat to eat my bagel before heading to the station. Richard arrived to start a new shift as I was eating and came over to chat with me. We ended up talking for half an hour. He told me he used to work as a volunteer with a cancer charity, accompanying patients to their appointments. Patients who had no friends or family to be with them. Richard seems like exactly the kind of person you would want with you in the hospital. He did this for four years after a relative of his died of cancer. He told me that he lost all of his friends, who seemed to think that hanging out with cancer patients made him contagious. When Richard found out I was a writer, he noted the names of my books and told me he also loves to write. His partner writes poetry, beautiful poetry that makes him cry. I was very fond of Richard. Richard is a gem. You should go stay at the Hotel Locomo just because Richard will welcome you. Your room might be the size of hamster cage, but the bed is comfortable and the coffee very good.

So that’s where we are. Now for the love of god, can we talk about something other than cancer?

How creative writing is helping Ukrainians to live

I told you earlier that I would share with you how creative writing is currently being taught to Ukrainians, both in and out of the country, and how it is saving them. Let me do that now. Let’s think about Ukrainians.

At the recent EACWP conference in Paris, Dmytro Raimov of Riba, Ukraine, spoke with us about his creative writing academy, which opened in 2016, with more than 3,000 students and 250 teachers.

“Because of the crisis,” he said, “people in Ukraine want to study creative writing, to find their voices.”

There is also a cultural revolution in Ukraine right now, he added. Russian authors are being cancelled. We have been told to cancel all Russian authors and theatre. To create in our own language.

There are no creative writing courses in Ukrainian universities, and people don’t want to merely study literature, they want to create something new.

“When there might be a missile attack any moment, you don’t have time to put off writing the book you have dreamed of writing,” Raimov said.

Ukrainians also want to study language, to write in Ukrainian. Writing for them is therapeutic. There are stories all around them. It is a road for students who want to write and share emotions but don’t need to or want to write a book. Their writing tutor is a kind of therapist, who helps them figure out what they want to write about.

The academy moved online during covid. Now it is only online, because it is too dangerous to stay in a classroom. The students are too uncomfortable there. And now half the students are in other countries but want to study in Ukrainian.

Most of the writers are older, between 50 and 55. The Ukrainian teachers collaborate with tutors in the UK. There is an MA program in the UK for Ukrainian students who would like to earn a degree, which Raimov described as, “A cool style part of their life.” I was intrigued by this phrasing and unsure what it meant. (It’s certainly not how I thought of my masters degrees!).

Students’ lives are constantly changing during the war. We need to help them claim a new identity, said Raimov. So they can say, “I am an economist and I am a writer.”

We need to say often, “You can,” even with adults. Until they believe it.

They would like to study other languages. Ukrainians need to read world literature to help them understand the countries they live in now, the cultures around them.

“A bad situation in society is a good situation for creative writing,” Raimov said. Writing allows his students to create new worlds on the page. To have the power of a god there, in one small place.

“This situation is the time for people to be in creative writing as a safe place and a good place to wait until when everything is okay. People write a lot of nice books during war,” Raimov concluded. “We need to rethink creative writing to think of it as a place to be human and a place of safety.”

The Assemblée Nationale in Paris has its Pride outfit on!