When support groups fail to support

I am grateful for the existence of cancer support groups, but they are not always the most helpful place for me to be. This week I talk about where I do find support, and my exciting new drug.

Cat and I standing on one of the ancient Roman roads beneath the streets of Narbonne.

Recently I logged on to an online support group through a British charity. Support groups have always been a double-edged sword for me; I crave the community of people who understand what it is like to live with ovarian cancer, but hearing the stories of others who are ahead of me on this road is often terrifying. I’ve been to this particular support group several times, and each time has been a different experience. The first time was so horrifying that it took me a year to go back. Everyone else who was there appeared to be actively dying, and I could not face it. But I need the company of people who understand, so I went back, and had two positive experiences, with gentle group leaders and encouraging other women. When there is someone newly diagnosed, it feels good to be able to help them, to offer advice on getting through chemo and surgery.

I decided to attend this time because I have been wobbly on my axis. My entire mood and outlook changes literally from minute to minute. One moment I will think, I’ll never be able to manage a writing residency again; I am too scared to be left alone when I am so shaky on my feet. The next I’ll think, I feel completely fine, and I desperately need uninterrupted time alone. I don’t want to lose my joy in solitude. I thought being amidst others who shared my anxieties might be grounding.

This time the group was a mix of old-timers and the more recently diagnosed. But almost every other woman was in her mid-seventies. These were all women whose children have grown up and are now in their forties, women who have finished their careers, women firmly anchored in their home. I am not saying that the illness is any less terrifying for them, or any less tragic. But they don’t share my immediate concerns about wanting to see my daughter grow up and wanting to finish the books I am writing. When they feel fatigued, they can rest. They aren’t worried that their brain won’t be spry enough to write. Their terror is just as profound as mine, it’s just happening at a different life stage. And I feel isolated in my concerns. I am still in the middle of my life, with so much left to do.

While previous groups have sometimes left me feeling lifted, like I have been thrown a rope, this recent group left me paralyzed with fear. I stumbled upstairs afterwards and practically begged to cook dinner, anything to distract me from the places my mind was going. My brain spun with the images of the woman confined to her bed, the woman undergoing a new trial that incapacitates her for four days a week, the woman whose grandchildren were visiting her. She lived long enough to see grandchildren before she was diagnosed! My envy felt poisonous.

The bed-bound woman told us however miserable we felt now, we would realize how good it was later, when the disease progressed. I was confused. Was this intended to cheer me up? Yet this same woman also gave me one thing to hold: Jennifer, she said, it’s the women with young children who do the best. No one fights like a mother. I felt a little lift in me just writing that.

I wish I didn’t have to “fight.” I wish I could just live my life.

I began taking niraparib, a PARP inhibitor that keeps cancer cells from being able to repair damage to their DNA, two weeks ago. François rang me from the hospital to tell me that Dr. D’Hondt said that it didn’t look like my platelets were rising, so we might as well start the drug. Which makes me a little nervous, but also glad to get out of this particular liminal space and into the next phase of treatment. I’m keen to inhibit some PARP.

When we went to the pharmacist to fill my prescriptions, she took us to a back room and sat down with us to explain everything. She gave me one box of niraparib, and a dozen other boxes of drugs to cope with possible side effects. She took my new blood pressure monitor out of its box and showed me how to use it. While on this drug I must take my blood pressure twice a day, morning and night. I must get my blood tested once a week, although that’s nothing new.

Many of the women in the support group were either taking niraparib or a similar PARP inhibitor, or had taken it. The bed-bound woman told me that once on the drug I would be too fatigued/foggy to work, which sent me into panic spirals. I cannot live without working. But one woman I’ve met twice before has been on it for three years and seems pretty sharp to me. She does yoga for hours a day and seems full of energy. So.

Getting through a support group for me often involves repeating the mantra, they are not me. They are not me. They are not me. They are not me. Their cancer is different, their body chemistry is different, their lifestyles are different. Their outcome is not my outcome. It would be too easy to absorb their words as wisdom, as truth. But truth is a different thing for each of us.

I woke this morning before my alarm, heart racing. I stayed in bed doing breathing exercises before I felt calm enough to get up. My blood pressure was higher this morning than last night, but I am trying not to read too much into it; I know blood pressure fluctuates wildly.

Last Friday evening, I received a text from my friend Cat. She and her family were traveling from Paris to Narbonne for the school holidays. Could she come to visit me? Or perhaps I would want to meet halfway?

I looked up Narbonne on the map. It was about two hours away. Maybe we could come to you, I said. Spend the night. We could use a change of scenery. Saturday morning Tim found an affordable room in the city and we scrambled to pack. As soon as I was piling up clothing to take and gathering my toiletries, the heavy depression that had been weighing on me lightened. Travel was something familiar, a part of normal life. Something we have always been good at. I stuffed my blood pressure monitor, booklet of emergency numbers, and my pill case into our suitcase. Maybe I could fend off cancer and have a life at the same time?

It was a gloriously sunny day. I drove, Tim exclaiming over the beauty of the mountains and rivers we wound our way past. We arrived in Narbonne by 3 and met Cat, her husband Phil, and their daughters Melanie and Jessica in a café on the beach.

I should tell you briefly about Cat. We met at the Columbia Graduate School of Journalism in 1996. Cat, Kathleen, and I worked as a team in a class on television journalism for print majors. (We all ended up in newspapers and magazines). Together we created some epically terrible television journalism on trans opera singers, female doormen, and skateboarders. The experience bonded us.

After graduation, we were each constantly moving, following work. For many years, Cat and I overlapped in New York City, where we met up in Irish pubs in the Bronx to have long, wide-ranging conversations. We watched each other move through romantic relationships and conducted postmortems. We discussed our careers and ambitions.

Cat married a Brit and moved to France long before I married a Brit and moved to France (she’s got plenty of liminal cred). Whenever we lived in London and were close enough to visit, we did. We met each other’s children when they were babies. We wandered museums and parks together and cooked each other meals. The longer we each lived abroad, the more we had in common: the visa application agonies, citizenship tests, driving tests, the navigation of other cultures. 

When Cat’s firstborn, Robbie, was nearly five, he died from Wilms’ tumor after a year of terrible suffering. This is her family’s story, not mine to tell. I share this much to say that Cat understands grief, and the world of cancer.

Cat came to look after me twice during my initial eighteen months of treatment. The first time she came, I was still reeling from my diagnosis. She accompanied me on walks after my first chemo caused me to blackout, to make sure I didn’t topple over. We browsed a used bookstore, recommending books to each other. She distracted me with her always-engaging conversation. The second time she came to stay with me, I was recovering from abdominal surgery. She ran to pharmacies when I needed new bandages. She picked me up at the hospital after I had my port surgically implanted. She sat with me in the mornings when all I could do was sit on the floor crying. She cooked me meals.

It is easy to be with Cat because I don’t have to explain anything. She understands what it is like to face everything I am facing. Her presence reminds me that other people are suffering worse traumas. I imagine that losing a child is far worse than having cancer yourself.

Cat also knew me when I was more me. She knew me in my wilder years, has known me through all the enormous changes in our lives. I don’t need to perform myself for her.

After an afternoon at the beach, watching the girls swim and taking long walks along the shore, I felt myself happier than I have been recently. At dinner I didn’t contribute much to the conversation, but it didn’t matter. It was relaxing just to listen to the others. Cat is always brimming with sharp observations about the world.

Sunday morning, just after yoga, my blood pressure spiked. It was above the level at which I needed to either ring a doctor or go to an emergency room. I kept doing breathing exercises trying to calm my mounting anxiety, which didn’t help my numbers. This brought up all of my fears about being away from home, from my medical team. I didn’t know what happened when blood pressure went through the roof. I rang the emergency number and a doctor rang me back. She was reassuring, telling me to take my blood pressure again after 15 minutes of repose.

We had planned a day of exploring the city. And we were in the middle of checking out of our hotel. So it wasn’t until we stopped for lunch that I tested again. My numbers were falling. The doctor had said I would be fine, that I could see a doctor the next day if my blood pressure was still high. Yet all through the day I could not free myself from a corset of anxiety around my torso. I was grateful for the distraction of friends and activity.

That afternoon we took the kids to do acrobranch, outdoor obstacle courses in the trees that included ropes and zip lines. We had other ideas for the afternoon, but the girls were persuasive. Once we climbed up into the trees and sent the girls off on their adventures, we settled on a picnic table overlooking Gruisson. It was sunny and cool and peaceful under the trees. My mind was working on the plot of a story I had to finish writing before the end of the day for a contest. When the girls reached the end of their time, my heart began to fall once more. I didn’t want to leave Cat. I feel despair, I told her. I feel like I have nothing to look forward to.

You have a daughter, Tim reminded me. You have plenty to look forward to.

And he is correct. Since the weekend, my mood and energy levels have improved. I have climbed the small mountain behind our village twice, alone. I feel happy to be on my PARP inhibitor and hopeful that it is doing its job. Yesterday we began planning summer travels, like healthy people. I am planning for a healthy summer. I feel determined to continue with living, even knowing that my determination cannot keep me from recurrence. How else can I get through the days?

I may stay away from support groups for awhile. It feels better to connect with friends, to engage in work, to plan travel. A weekend with Cat and her family did me far more good than any support group.

Perhaps my true support group is made of my friends around the world, many of whom personally know the devastation of cancer. It is made of you who take the time to read this newsletter each week. Of my family. I just need to keep reaching out my arms to you all, drawing you close.