Sunna Kristín Hilmarsdóttir was diagnosed with multiple myeloma at the end of October 2021, then aged 37. Multiple myeloma is extremely rare in people under the age of forty, and in his case it was advanced and had spread to the lymph nodes, which is also very rare in general. Her doctor therefore considered it likely that she had suffered from the disease for many years, without experiencing any significant symptoms.
Sunna Kristín tells her story in a column of Kraft paper recently published, it chronicles the process of diagnosis, treatment and recovery. It’s been 18 months since the diagnosis and Sunna Kristín says it’s not uncommon that when the physical treatment ends, the mental challenges take over. Fortunately, she has a good one.
“You’re gonna make me sick”
Sunna Kristín says she clearly remembers a strong sense of unreality in all the different situations following the diagnosis and the first weeks of chemotherapy.
“For example, I had a really hard time accepting the message from one of the doctors when I was recently diagnosed and he said I had a ‘big disease’. So I would have to contact the hospital if I had any symptoms. I remember thinking, “But I’m not sick. I never get sick. You’re going to make me sick. It was so surreal,” says Sunna Kristín.
She says it was impossible to cope with what the internet was telling her: that the cancer was incurable and she would die in about two years. “I believed it, but at the same time I didn’t want to believe it at all. So it was a great relief when my doctor told me that I shouldn’t believe everything I read on the internet about the Life Expectancy: The stats weren’t up to date and I was so young they hardly applied to me anyway. Chances are I’ll live much, much longer than both years in which myeloma can be successfully controlled. Gradually, I began to see the future as a reality rather than a dream that would never come true.”
How are you going to save me?
It has now been around 18 months since Sunna Kristin was diagnosed and she is in what is called “complete remission”. This actually means that the chemotherapy she underwent, which lasted about eight months, and the two stem cell treatments she underwent four months apart produced optimal results. There are no signs of active disease, but because multiple myeloma is incurable, it needs maintenance treatment for years to keep the disease under control.
“Overall, I received excellent service from the healthcare system. However, I did not always trust it and my skepticism peaked just as the hardest part of the treatment was about to begin. My friend passed away in mid-August and almost four weeks later I was admitted to 11G, the Landspítal hematology ward, the plan was as follows: undergo high dose treatment on Wednesday, spend the night in the hospital with intravenous fluids all the time, collect my stem cells on Thursday and go home for dinner.A week later, I was to be admitted again to 11G in protective isolation when the worst of the treatment was over says Sunna Kristin.
Preparations went according to plan, but in the aftermath, Sunna Kristín says she completely lost faith in medical science. “He was sure that I would be very sick, for example that I would get some kind of infection while I was completely immunocompromised, and I was sure that the doctors could not cure me. They could not save my friend then why should they be able to save me? They obviously had no idea what they were doing.”
Sunna Kristín says she remembered the fleetingness of life when her best friend died suddenly of breast cancer. She died on Saturday and on Monday Sunna Kristín showed up early in the morning at 11B to start collecting stem cells. It was supposed to be collected for three stem cell treatments, so there was less of a chance that she would be stuck with the blood bank collecting machine the lung of the week. “In the ward where my friend had undergone chemotherapy. In the evening I then had to go to the ward where she died, to receive a booster injection for my stem cells. I wanted to give up everything. It was so wrong, unfair and terribly difficult,” says Sunna Kristín, recalling the words her friend said to her over a year ago when they were both undergoing chemotherapy.
“Clichés are cliches because they are true.” We were talking about how the outlook on life changes when you are diagnosed with a life-threatening illness. A cliché but a true experience that I think most of us who have been diagnosed with cancer can relate to. Our loved ones can certainly relate to this new outlook on life as well, as well as phrases like “Life is now,” Kraft’s slogan.
Sunna Kristin Hilmarsdottir
I had a panic attack in the emergency room
Sunna Kristín says she discussed her fears with her doctor, who listened carefully and then did his best to convince her that she would not die.
“I didn’t believe it and the fear of death became overwhelming.” To skepticism and fear was added a guilty conscience of being alive. Why is my friend dead and not me? What fairness and justice was there in that? Nothing.”
Most things went as the doctor predicted, except for one thing. Sunna Kristín was released from 11G, returned home and everything was fine. Something happened at home that made her even sicker than she had been in isolation. Her roommate called home health care and the nurse on duty sent them to the emergency room.
“Sitting crying in a wheelchair in the ER with a temperature of 40 degrees and climbing, I felt closer to death than life. I stopped briefly in the waiting room and was granted a room room (with private toilet) inside the emergency department. Absolute luxury even though there was no window in the room. Once in the hospital bed, something happened that I can’t describe other than a panic attack. I screamed with the gasps and gasps that came with it as I told my husband that I was going to die. Everything I had feared, everything I I was sure it would happen – was about to happen. The doctors obviously had no idea what was going on and I was going to die.”
Sadness and anger, grief and sadness
“I obviously didn’t die. Three months after my stay in the ER I was seen again at 11G for stem cell treatment number 2. It went better than the first in every way, I don’t I wasn’t as injured and I didn’t end up in the emergency room after discharge.The last months were spent in rehabilitation, especially in Ljósin and Reykjalund, and I started maintenance therapy.
The physical rehabilitation went better than the mental rehabilitation. Over the past few weeks I have been feeling all sorts of emotions which I have made a conscious decision to suppress in order to put my head in the right place for stem cell treatments. Sadness and anger, grief and sadness.
Sorrow and anger at what was taken from me: my friend and the choice to have a child that would be biologically my own. Busy with all the things that need to be done – and so boring: going to the hospital, talking to the doctors, taking medicine. Sad because you don’t have a goal, you don’t work and you spend most of the day at home – because you’re tired, immunocompromised, sick or bored – and maybe it’s all at home. times,” says Sunna Kristín.
She says this is all probably normal and it’s not at all uncommon for people who have undergone cancer treatment to face the toughest mental challenges when treatment is over. Luckily, she’s fine, has a great psychologist and a wonderful occupational therapist – and surprisingly but true, a lot of rather clichéd things help her.
“One of them is the cliché that attitude is everything. That if you try to have the right attitude (so to speak) about the disease, the treatment and the situation you everything will be much easier. It’s very easy for someone who has not been young and who has been diagnosed with cancer to say this: “Try to be positive, believe that everything will be fine. Optimism is everything, hope is the most powerful weapon. And when that is said to you, you might think, “Yes, exactly.” It’s easy for you to say that.”
The point is, however, that it helps to be optimistic, to have hope. Maintaining optimism and hope is by no means always easy – and sometimes just plain impossible – but if you manage to recover these weapons after losing them, it will help you a lot more than you think.
The cliché about peer support is also true: it’s extremely helpful to meet other people in a similar situation, and I really can’t recommend reaching out to Kraft as soon as you’re sufficiently diagnosed. I did and I will always be infinitely grateful for everything the club has done for me and mine.”
The Kraftsblaðin can be read in its entirety here.
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