Mar 18, 2011
This is what it feels like to have breast cancer
Two lumps in two breasts in two different women who happen to be sisters sent them on a shared mission to revolutionize attitudes about cancer
Today, the two sisters, Josina and Josephine Bergsøe, are recovered, but their mission continues to fight the many taboos about breast cancer, about losing hair and breasts and about having a highly visible disease and its consequences.
At Dako we know a lot about how cancer looks, but not nearly enough about how it feels. This knowledge is fully in line with Dako’s vision of delivering the highest standards and accuracy in cancer diagnostics to cancer patients all over the world. That is why I asked Josina and Josephine to tell this story.
Josina claims that the disease has changed her life and that she will never be the same again.
“It’s like a filter has been removed, forcing me to be honest with myself now and forever more. I’ve quit my job as Head of Corporate Brand & Design at COWI. There were too many boulders to push up the mountain and too many compromises, too much politics. I didn’t want to “make do and pretend” anymore. I want to be in charge of my own life and follow my heart. I want to spend my time on projects that give my life meaning, like working on our book about breast cancer and taboos.”
They have experienced personally how much anxiety is associated with cancer and how much of a taboo it still is to call attention in public to your disease and to the consequences of cancer treatment. To most people, the word cancer equals death.
The photograph has changed
“Everyone leaving the Department of Oncology is bald and has had a lump or a breast removed,” says Josina, but a photograph of herself and Josephine without hair and showing the scars from their breast operations (but an otherwise energetic and life-confirming photo) never made it to the waiting rooms at the hospitals in Denmark.
They were told the reason was that even healthy people, including doctors and nurses, felt the photo was too provocative so it was decided that photos like that were not good for the patients. It’s best to hide your disease and the consequences of the treatment. Josina and Josephine received a letter from the hospital before starting their chemotherapy saying, among other things, that they would “be needing a wig”. They looked at each other and asked themselves if their fellow patients who were men also received a letter like that?
The patients are positive
The photo was subsequently used in the Advent calendar for Copenhagen University Hospital - Rigshospitalet - in December 2010. And Josina and Josephine were pleased to learn that out of the 24 photos, theirs received the most publicity.
Because of the photo they have also received many fantastic e-mails and comments from other patients saying that it was a relief to experience more visibility and openness about the disease and the consequences of the treatment.
Josina and Josephine have also walked the catwalk bald together with four other women in connection with the awarding of a DKK 1.5-million grant for breast cancer research and the after effects at Aarhus University, Denmark. Josina hopes to have 60 bald women participating in the next catwalk in the fall. “It really feels good, like a kind of rehabilitation, to step out on the podium as a model in beautiful, elegant clothing,” laughs Josina.
The two sisters were diagnosed with breast cancer just a few weeks apart. Josina discovered a lump in her left breast one morning in the bathroom.
“I have always been diligent about examining my breasts because our mother has had breast cancer. I got really, really scared, and when the doctor doing my mammography and ultrasound at the private hospital told me I would need a biopsy, I fainted. I had to wait almost three weeks for the results. And for that entire period it felt like “walking on glass”. I had diarrhea, lost 7 kg, my hair fell out and I kept forgetting things. Not only that, I was also involved in three fender-benders.
Josephine only found out she had a lump because Josina called to tell her about her lump and told her she should get checked. Initially, Josephine did not believe she had cancer because the first tests did not show anything. However, an ultrasound revealed a lump in her right breast.
“I was very surprised and kept telling the doctor that it was probably something else, until he finally said ‘no, there isn’t much else it can be’. But he couldn’t say anything for sure until the following day when the results of the biopsy were ready.” That night Josephine called a good friend (who is a doctor). He helped her see the truth. “When the doctor at Hamlet Hospital says it’s breast cancer, you have to accept it.”
Panic after the operation
When Josephine received the results, her husband broke down. But she handled it well.
“I thought that if my little sister could handle it, so could I. I just hoped that they wouldn’t have to remove any lymph tissue. But when I woke up after the operation, I could see that my husband was really scared. They had removed part of the lymph node. In recovery, I received another shock. “I heard a newly operated woman saying to her nurse that it was a good thing her cancer hadn’t spread to the lymph nodes, ‘because you know that means only one thing, there isn’t much time left’.”
Only a thin curtain separated their beds. Josephine panicked and ran out into the hall with tubes flying through the air.
“I wanted to go home right away. If I didn’t have much time to live, then I wanted to go home to my family,” says Josephine.
The period from the diagnosis until treatment was relatively short. This was primarily thanks to the efforts of Josina’s husband, Søren, who pushed for a quick diagnosis and treatment. Josephine’s husband, Lasse, asked Josina’s husband for advice on several occasions and he and Josephine learned to use the same tricks in their dialogue with the hospital.
Josina tells how she and her husband turned her cancer into a project. They gathered all the information they could find and her husband kept a journal. It made her feel good, like being in the driver’s seat, which she found reassuring. She felt like she was the one in control, not the cancer.
Josina emphasizes the importance of not expecting the system to take care of you during the process. You have to constantly stay informed, seek out information, ask lots of questions and challenge the doctors if you feel like something isn’t working or sounds wrong.
Josephine admits that she probably would not have tackled the situation in the same way if it had not been for Josina. Even so, she has been involved from the beginning with her sister on the “mission”, for one thing because she found all the taboos and prejudices they met along the way so provoking.
Only for men
Josina tells about the fantastic support she received from her husband, both before and after the operation. She emphasizes the importance of that kind of support, which is one of the things she wants to pass on in their upcoming book so relatives feel able to contribute during such a difficult situation. There is an entire section called “Only for men”.
She and her husband once experienced a very unpleasant discussion about the medical side effects and sex with a doctor who came off as “sexist, degrading to women, rude and completely thoughtless,” as Josina puts it. He told her that there was a chance her husband might run off with his secretary if she didn’t pay attention to the side effects and their consequences for their sex life.
She and her husband decided to lodge a complaint and she contacted the hospital’s attorney. They were both shocked by the doctor’s comment. “Did he just say what I think he said?” Just before Christmas, the chief physician called them personally to apologize for what was said, promising Josina – after her pointed insistence – that he would never speak that way to other patients.
The “chemo chariot”
They had different experiences during treatment.
The chemotherapy, which lasted about 6 months, made them both very sick but in different ways. Josephine was very, very ill, throwing up constantly.
Josina didn’t throw up but felt miserable all the time. Her head swelled up, she had allergic reactions, she itched and had tiny red bumps all over. They both lost their hair, their eyelashes and their nails.
They both talk about how they felt off and on like they had a serious case of the flu with high fever and achy joints. Both felt at times like pill poppers, having grown up in a home where taking pills was frowned upon.
Josina’s chemo account was: one bad week, two good. Josephine’s was: Fifty-fifty.
On top of that, the chemo forced them both into a raging menopause with heat flashes, dryness of the mouth and vagina, decreased sense of taste and running eyes.
But because they knew the chemotherapy would be tough, they had both invested in a “chemo chariot” for their gardens – huge, comfy double beds on wheels with lots of “great” pillows. It was a place where they could lie around when they felt worst, under the trees, looking up at the sky, enjoying the roses and watching the kids play. Throughout the process, Josina and Josephine called each other up to four times a day. “We have grown really close again, like when we were kids, and it has been a fantastic support,” says Josina.
“We could say to the kids: ‘We aren’t going to die. It’s not the cancer but the chemo that is making us so sick.’ And then we’ve been really lucky to have our mom as a good example that you don’t have to die from breast cancer. She lives just down the way, across the road,” says Josina. “It has had a very strong effect on my husband, especially in the beginning, when I started talking about my funeral. My husband lost his mother eight years ago. She died of breast cancer.”
At the moment, Josina is dealing with some after effects. Her sleep pattern is messed up, which has affected her work and her ability to concentrate. The menopause has been very severe because it was artificially induced. On top of that she breaks into tears very easily.
Where is feminine identity located?
“Luckily I have a good therapist and that’s important,” says Josina, who concludes the interview by saying that it is a misunderstanding to think that your feminine identity is in your hair, your breasts or your hips. “It’s crucial that we don’t let ourselves or our partners be tricked into believing that. If we all continue to believe it, then by definition we aren’t worth anything when our hair falls out or our breasts are removed. No, feminine identity is located in your self-esteem.”
After the interview with Josina and Josephine, I find myself with an indelible impression of how much courage, energy, wisdom and positive visions that needs to be mobilized on a mission like theirs. The mission is about changing attitudes; it can even be called a revolution.
They are currently working on a book (with the working title “The taboo crusher”), which will contain all of this and more for the benefit and enjoyment of other cancer patients and their partners, children and loved ones.
Text by Lillian Lykke Andersen
Photos by Sif Meincke