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Her cancer found its place on Facebook

A collage of two photos of a woman. Photo collage.
Evelina Lindén is free of her cancer. She no longer needs a turban.

“As though I was driving a fast car but had enough margin to turn before hitting the rock wall.” That is how Evelina Lindén describes her experience of having a cancer tumour that was aggressive but treatable. By being open about her illness and sharing images showing how she was feeling on Facebook, she was able to keep the conversation about healthy life going with her friends.

“It was so nice that the cancer discussion had its own forum, and nobody needed to whisper behind my back wondering how I was really feeling. Everything was on Facebook.”

A lump in her breast

It was in December three years ago that Evelina Lindén found out the almond-sized lump she had found in her left breast was a malignant aggressive tumour requiring treatment with surgery, radiation and hormone-suppressing drugs. Then, as now, she was working as a communication officer both at NanoLund and at the Historical Museum, which had been closed for a couple of years for renovation and was finally ready to welcome visitors again.

“The first thing I thought when I noticed the lump was that I didn’t have time to be ill – we had a museum to inaugurate after all …”

The second thought, and perhaps the most difficult of all, was how to tell her teenage sons.

“I didn’t see the cancer diagnosis as a death sentence, but I was very concerned that my sons would be scared and worried.” 

Went back to work

Evelina Lindén managed to postpone her operation until the day after her oldest son’s sixteenth birthday, and she underwent surgery at the end of January 2019. It went quite undramatically and she returned home the same day, although the doctor wanted to put her on full-time sick leave for the whole period of her treatment, which was to take place over the summer.

“But I wanted to work and went back after the operation, before the start of the chemotherapy. The everyday conversations with people including the carpenters who were working in the museum were important to me.”

Shared her experience on Facebook

After that, she was on full-time sick leave during the chemotherapy and radiation treatment and went back to work part-time in September that year. It also took some time before Evelina Lindén decided to publish news of her illness on Facebook. She has much of her circle of friends on the platform, many old university friends and former colleagues, but above all her current colleagues and her relatives. She was advised to share by her friend and journalist colleague Andreas Ekström, who has been open about his chronic liver inflammation which required a transplant.

“He said I would be doing myself a big favour by putting it out there – not having to report on my health status every time I met someone. And he was right about that”, says Evelina Lindén.

The vast majority of reactions she got was supportive, but there were also those who questioned her blind trust in the advice she received from the team treating her. That was a form of questioning which didn’t go down well.

“A couple of friendships were ruined. But, on the other hand, there were more people who came out of the woodwork and became very important to me.”

Obeyed the doctors

The images that Evelina Lindén shared in the beginning showed her bald and sometimes in the treatment room with a catheter called a PICC line in her arm to transport the chemotherapy drugs to the heart, which then pumps them out into the body. But when even her eyebrows fell out, she reached the limit of what she could stand.

“Appearance is important and I refused to go around with no eyebrows, so I went to a tattoo artist who helped me sort that out”, she says, noting that that was the only time she went against the recommendations of the healthcare staff, who advised against it because of the risk of infection.

“But otherwise I was a compliant patient and did exactly as I was told. After all, I live in the University environment and I believe in science.”

A collage made of two photos of the same woman. Photo collage.
Two of the photos that Evelina Lindén shared with her friends on Facebook while she was sick.

Evelina Lindén also learnt to tie beautiful turbans out of silk scarves and, when the summer arrived, she wore stylish hats. The images on Facebook became increasingly positive. But the great fatigue could neither be tattooed nor dressed away. She asked for a few treatment-free summer weeks, which meant that she postponed the radiation which should really have started sooner after the chemotherapy. She spent those weeks by the sea in Bohuslän and Halland and celebrated her father’s 70th birthday, among other things.

“When I walked to the station to take the train it took me half an hour. When I got back, the same walk took ten minutes.”

Declared free from cancer

When the radiation started, some of the fatigue returned. She cycled to the oncology department every weekday morning for four weeks and then home again to sleep. The treatment was successful and she was declared cancer-free just over a year on from diagnosis of the aggressive tumour. However, she is to continue taking hormone-suppressing drugs for five years to prevent a recurrence.

“I will have taken a total of 1 827 pills once those years are over”, she says, but she is grateful for the treatment for safety’s sake.

Overall, Evelina Lindén feels that she was very well treated and received by the healthcare system at all levels. She did not experience the gap that researchers say exists between hospital care and primary healthcare. However, she finds it noteworthy that the Swedish Social Insurance Agency makes its own medical assessments of patients’ ability to work, sometimes completely contradicting the doctors who are treating and meeting the patients.

“Far too much of the doctors’ time is spent choosing the right kind of formulation in the doctor’s certificates so as to avoid falling foul of the gatekeepers at the Social Insurance Agency”, she says.

Felt no need to write a book

Evelina Lindén, who is a writer and has always kept a journal, is a little surprised that she did not write much during her illness. She has been asked many times whether she is going to write a book about her cancer, but she doesn’t feel any need to do so.

“What’s more, Susan Sontag has already written everything that needs to be said in her book ‘Illness as Metaphor’ – I have nothing to add.”

She tried to read a few of the patient stories that have recently been published in book form, such as Yvonne Hirdman’s ‘Behandlingen’ (The Treatment) and Kristina Sandberg’s ‘En ensam plats’ (A lonely place) – but their stories did not resonate with her. However, she did respond to Sara Danius’s 2014 winter talk about her ongoing cancer treatment.  

A woman walks on yellow leafs in a forest. Photo.
Evelina Lindén. Photo: Kennet Ruona

“Cancer is different for everyone”, she finds. “And I could barely manage to read when I was at the worst stage of my illness, but I found audio books and could wander around listening to everything from Per Anders Fogelström to Karin Smirnoff.”

And, at that time, Facebook also fulfilled its function. Now that channel no longer feels so important – but in the autumn she published a new, perhaps somewhat unexpected, picture of herself – rowing a little dinghy on a lake.

“The cancer became a much-needed wake-up call for me. Life is not endless and we have to make sure that we realise our own dreams. I have always wanted a boat of my own!”

 

cover photo

About LUM

The first edition of Lund University Magazine – LUM – was published 1968. Today, the magazine reaches all employees and also people outside the university. The magazine is published six times per year. Editor Jan Olsson.

LUM website in Swedish

Editorial staff

Jan Olsson


046-222 94 79

jan [dot] olsson [at] kommunikation [dot] lu [dot] se

 

Minna Wallén-Widung

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