It’s Breast Cancer Awareness Month in the US and, like many breast cancer patients, journalist Xeni Jardin is none too happy about it. She welcomed “Pinktober” on Twitter with her signature mix of righteous outrage and poignant sarcasm:

Jardin has been known for her online candor on the topic of breast cancer ever since she inadvertently live-tweeted her own diagnosis to 50,000 followers two years ago. Through subsequent blogposts, tweets and Instagram photos, she has chronicled her personal experience of cancer treatment, from chemotherapy through surgery, radiation and beyond, to a growing audience. Jardin Instagrammed routine trips to the doctor’s office, momentous events (like the day she pre-emptively buzzed off her blonde hair to beat chemo to the punch), and many a middle-finger raised at cancer. She wrote eloquently about her diagnosis and treatment for Boing Boing, where she is an editor, writer and producer. And she tweeted often about her fears, frustrations and small victories.

Today, she is over the worst of her treatment, Jardin told the Guardian, but she feels irreversibly changed – physically and psychologically. For one thing, she’s not sure she would have been quite as “sharey” if she had to do it all again, she said. But that’s not to discount the role online relationships have played in her ongoing recovery. If you ask Jardin, the internet helped save her life.

The diagnosis: ‘I could not even say I had cancer, it just hurt me so much to pronounce that word’

“Two of my close friends had gotten diagnosed with breast cancer at an early age,” Jardin said, explaining why she felt compelled to go in for her own mammogram in December 2011. She was 41, just edging into the age group recommended for screening. 

Jardin decided to live-tweet the trip to a Los Angeles women’s health center as a way of insulating herself against what seemed at the time an abstract and improbable outcome.

“I thought: ‘I’m a very healthy and health-conscious woman, people like me don’t get cancer,” she said over the phone. “I convinced myself: ‘Oh, I’m tweeting this as a public service. They won’t find anything, but it’ll be a way of encouraging other women to go get checked.’”

But the mammogram did find something: an abnormal spot on Jardin’s right breast, which an ultrasound and later biopsy confirmed to be cancer.

After calling her boyfriend, who was out of town on business, and a close friend who came to be by her side, Jardin tweeted the news to her 50,000 followers. “I have cancer. I’m in good hands,” she wrote. Then she began to deal with what it means to have cancer.

“The first month after diagnosis and before the start of my treatment was mostly defined by two things: the first was the shock of having been diagnosed. I could not even say the word cancer. I would just start crying. I could not even say I had cancer: it just hurt me so much to pronounce that word,” she said.

“Obviously, a year and a half later I’ve acclimated to that.”

Jardin also felt overwhelmed by the steep learning curve she suddenly faced during that first month. “In the middle of the horrible shock, I had to become an expert in this thing that was trying to kill me. I had to become an expert in the medical system which I’d had [very little] interaction with all my life,” she said. She was surprised by how many medical decisions were often left up to her: like, would she go for chemo first, or surgery first?

“There was lumpectomy, which meant take some of the breast tissue out but spare the breast. Or we could do chemotherapy first, with lumpectomy. Or a unilateral mastectomy with maybe chemo and maybe radiation, or you do a bilateral mastectomy” – which means they take both breasts, she explained.

“I think I made the best decisions I could and I got the best care that was available, and so far things are going well.” But, she adds, the physical and mental toll of cancer and its treatments cannot be overstated.

Nausea, ‘scanxiety’ and extreme isolation

During chemotherapy, Jardin would get struck by a kind of fatigue she had never felt before and she suffered intense nausea, as many patients do. Often, the side effects became so severe she could barely get out of bed, let alone drive a car, go grocery shopping or cook.

The psychological tolls were no less severe. Panic attacks would overwhelm her periodically and she experienced regular “scanxiety” – the feelings of dread that grip patients before new tests. But the most powerful feeling that accompanied breast cancer diagnosis was that of deep isolation.

“I would say that isolation is one of the most powerful throughlines of this experience. You can feel incredibly alone, even when you’re with people who love you. Cancer and the experience of being close to death, the experience of having your life threatened by something inside you, is an incredibly [lonely one],” Jardin said.

Along with strong support from caregivers, her longtime partner and close friends, a great source of comfort and information for Jardin came from online communities – from the ranks of her own heterogeneous group of followers, as well as more official breast cancer support groups.

Breast cancer support online: a life-saving community 

“I think that the internet helped save my life,” Jardin said. “The women who I met through the internet: through comments on my blog posts, through Twitter, through friends of friends online, they connected me to valuable referrals and life-saving information that was a part of my treatment decisions. Some of them became deeply trusted mentors and allies who I could call in the middle of the night before a big surgery.”

A Twitter-based discussion and support group called BCSM – which stands for Breast Cancer Social Media – continues to play a large role in her life. Every Monday, breast cancer patients facing different stages and types of the disease, Jardin among them, come together around the hashtag #bcsm to share new knowledge and experiences, or to rail against shared headaches – like the advertising onslaught of Pinktober.

One of the most important decisions Jardin made was starting to see a “cancer shrink” – a qualified specialist to help deal with some of the deeper psychological impacts of the disease. “I’m very glad that many of the people in my life, including these brave women on Twitter encouraged me to get mental health support,” she said. “I feel like every single cancer patient should be offered that. It’s as critical as the drugs, the surgery, the radiation.”

‘Sometimes we need someone to tell us to turn off Twitter’

Having a specialist to talk to helped Jardin deal with some of the deeper psychological impacts of breast cancer in a way that friends, family, and online community could not. She learned to deal with inner chaos more deliberately.

“Being open online opened me up to connection with so many strangers who were experiencing the exact same thing I was – or some version of it. It was and remains profound to me,” Jardin said. “But [the internet] can be good and it can be bad.”

“Sometimes those of us who are very comfortable sharing and being hyper-chatty about our experience, sometimes we need a friend or a loved one to tell us to turn off Twitter or put away the iPhone. The instinct to talk to the world that’s tuning into you as a way of calming yourself when you’re anxious, that’s not always good. Sometimes what you need is to be silent and be offline in order to process true panic.

Had she known on 1 December 2011 what she knows now – both the results of her mammogram and more personal lessons learned since – Jardin said she probably would not have live-tweeted her mammogram, and she might have shared fewer details since. But, at the time, “it’s what felt comforting,” and it often still does.

“I don’t mean to say, ‘If I had to do it again I would stay offline all the time’ – not at all. But I realize now that just as there is value in connecting, there can also be value in disconnecting and just dealing with what’s going on inside our bodies and inside our minds,” she said. “Finding that balance is something that I work on every single day.”

Two years after the diagnosis, “Who I am has changed, what I can tolerate has changed and my identity has changed,” Jardin said. She is now working on a book about her public and personal experience of breast cancer, and taking the rest day by day.