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"In the end, we had to ask for information"

A single conversation with a doctor was all Marie Tisell got during the eight years her adult daughter lived with leukaemia. By chance, she learned from a nurse that the end was close.

Marie Tisell

No one suspected anything. Katarina had been acting as normal on this last evening at the hospital when her mother Marie visited. But perhaps even more affectionate than normal. But, heavily marked by her disease, which had recurred with full force, she couldn't take it any more. The next day, Katarina jumped out of a window and died.

"I had, of course, wanted to be with her at the end, would have lain beside her in a bed and held her hand," says Marie Tisell.

In late summer 1999, Katarina, who was 34 years old, started having back pain and was signed off work. It was not until November that she was diagnosed after falling at home.

"I looked after the grandchildren when her husband came home from St. Göran's Hospital and told me that Katarina had contracted a form of leukaemia, myeloma. I cried and cried the entire bus journey home."

Unable to walk

Katarina had a high fever, was unable to walk and was moved to a haematology ward in what was then Huddinge Hospital, but neither her husband, her father Lasse, nor Marie were given any information about her disease.

"We happened to find a leaflet in a corridor, which informed us that myeloma was incurable. In the end, we had to ask for information, but three weeks had passed by then."

A doctor came into Katarina's room and sat on the edge of the bed to have a conversation when Marie was there.

"It was not the doctor in charge of her treatment, who was very skilful at treating the disease itself, but not at looking after people. This doctor was very good at explaining, even though we needed to have had this conversation much earlier."

Katarina and Marie had prepared some questions, which they got answers to, among them that it was really unusual for such a young person to suffer from myeloma. What they did not learn was that the average survival time for the disease was five years. Marie only learned this eight years later, after Katarina's death.

"We needed to have heard the same information a week earlier. When you are in such a state of shock, you can't take everything in," she says.

A period of improvement

Following the acute stage, there was a period of improvement. Chemotherapy had an effect and Katarina received two transplants of her own stem cells and was isolated. She learned to stand and walk again at the Red Cross Hospital. For six years, Katarina was able to live almost a normal life with her husband and their two boys. She went for tests every six months.

In November 2006, Marie learned that her father had stomach cancer. The same month, she accompanied Katarina to a doctor's appointment at Huddinge Hospital.

"The doctor said 'What has happened now is what I didn't think would happen'. Katarina's disease was back. She never swore and was always so calm, but after that she screamed 'bloody disease!'.

Marie does not know today how she kept it together. Her father died in March 2007, as Katarina fought the disease with new cytostatic treatments. She lost her long hair, her kidneys took a beating and she had to go on dialysis.

Despite everything, Marie never understood that Katarina could die. No one at the hospital took the initiative to meet with the family.

"But the week before she died, in August of the same year, I saw how swollen her feet were, despite the dialysis, and thought 'this doesn't work'. She was in a really bad way. But we didn't get any information, it was only by chance that I met the ward sister who said 'You understand that the prognosis is bad?'"

So Katarina chose to end her life. She had written a suicide note on a piece of paper in her room, saying that she loved them all and asking for forgiveness.

"I understand her choice completely. She would have died in any case. But when we arrived at the hospital, Katarina's body had already been laid out. She looked lovely, but I had wanted to do this one last service for her myself. They should have asked."

The lack of information

In general, Marie is disappointed about the lack of information. She does not feel it should be necessary to ask for information, instead it should be the hospital's responsibility to provide this to both the patient and their relatives.

"As a relative, you don't think about what sort of information you can get. Even though there was a good contact nurse, she mainly provided practical information, and a counsellor was only made available after Katarina's death."

She also wishes that someone would have called them back after it happened, so that they could get closure. The only person Marie met was the nurse who was looking after Katarina on the day she jumped.

Where the hospital's information was lacking, the saviour has instead been the Swedish Leukaemia Association. This is where Marie found support and regularly meets with other mothers in the same situation. Since Katarina's death, she has been battling tinnitus and severe panic disorder. Although the grief is no longer acute, is has become deeper.

"I am sad that some acquaintances no longer greet me on the street or think I should stop talking about Katarina. But if I did, she would be gone for ever. So I probably wouldn't have been able to cope without my mothers. With them I can be myself and they all understand exactly how I'm feeling," says Marie Tisell.

Text: Helena Mayer. First published in Swedish in Medicinsk Vetenskap 4/2013.