As the only person in his twenties in the waiting room: ‘Care for young people with cancer must be better’

Can I still get a mortgage?

Can I still work?

How am I supposed to tell my friends?

All these questions were on Lisanne de Groot’s mind when she was told at age 28 that she had breast cancer. Doctors said he was treatable, and she had a good chance, but they didn’t tell her about that mortgage, or about working through cancer, or about that awkward conversation with her friends.

“When you’re young, you’re at a completely different stage and you have different needs. I was in a group of friends with eight girls. Five girls were pregnant or had just given birth, and one of them was getting married, and I had cancer. So cynical, I didn’t hate my friends, but I also was I would like a normal life myself. I couldn’t, so I suffered for it.”

She was far from her healthy peers. But she was also misaligned with her fellow sufferers: they were often older and middle-aged. “I was feeling lonely sometimes. Your life is still on, and there are few people who feel the way you feel, like you’re a sick 20-year-old.” Looking back, Laysan would have loved some psychological guidance from someone who knows what can come for people when they get cancer at that young stage in life.

Search

Laysan is not alone in this. Both the Comprehensive Cancer Center in the Netherlands and the AYA National Care Network did Research among 4000 young cancer patients† This indicates that three-quarters of the group continued to experience symptoms of fatigue for some time after diagnosis, and nearly half of the group did not receive additional psychosocial care, when it may have been needed.

Half of the (former) patients surveyed also indicated that cancer and its treatments led to limited job opportunities.

“Good cancer care is not just about the tumor or the treatments,” Lisan says. According to her, it should also be possible to address such questions as: How to apply for a disability pension? Do you tell her on your first date that you have cancer? What about insurance?

For example, it has been known for some time that it is very difficult and very expensive for former patients to obtain insurance. This is shown in the video below:

Lisan believes that there should be more “people-oriented” rather than “tumor-oriented” care. “We are more than just a bunion in the legs.”

“Care should be broader, and at the same time more age-specific,” says Yolanda Selma, 33, who heard three years ago that she had metastatic lymphoma. Healing is no longer possible, a slap in the face, but it still stretches. This is the straw that sticks with it. “I’ve been walking around with complaints for ten years, from swollen glands in my armpits to being tired and dizzy and often getting the flu.”

listen better

Two different GPs told her they were “drained,” because yes: Yolanda was young and had six children, and it’s a busy job. “I think if I had been older, I would have referred earlier with these complaints. Then I might have had a chance to heal.”

Yolanda believes that patients should be listened to more carefully. “Not every vague complaint of fatigue means fatigue. Young people can get sick, too. One time I asked a man: Isn’t this cancer? You don’t want to have confirmation on this question, but if someone goes this far and asks this literally difficult question, they should That is actually an indication that you should refer him.”

Once Yolanda was diagnosed, she noticed that it was about more than just “having cancer and being treated”. “My mom is still young, just like my partner. Who is going to take care of me when I get sick? And who is going to take care of the kids? There weren’t any additional childcare options. While I’m really not the only young mom who is sick.”

in thousands

The report concluded that 32,000 young people are now living with or have had cancer. They are called “signs” in the medical world (Teenagers and young adults† To improve the care of young people with cancer, specialist nurses must be trained. The Dutch Comprehensive Cancer Center and the national AYA care network advocate this.

“I didn’t even know what ‘ayah’ meant,” Lisan says. “I didn’t hear that term at a cancer conference a year after my diagnosis so I thought: aahaaa! A lot has happened in its place.” Yolanda says of the term: “I vaguely knew what it meant, but when I walked into a private verse lounge at the hospital in Groningen, it was completely empty. Very little is known about this group of patients.”

More awareness, a special team of nurses, but also communication with fellow patients can help. Lisan: “You can talk without noise or disturbance, you don’t talk nonsense anymore. Life is no longer about that job, or that big house or that car.”

Although many young people struggle in their work when they are sick. To work or not to work during chemotherapy? Should you tell your new employer or should you not tell your new employer that you (have) cancer? For example, Laysan felt that when her hair grew back and she took off her wig, her boss thought: Well, that’s better. “But I still had a lot of after-effects from the treatments, I was tired, and I still feel sometimes, even now that I’m clean.”

After treatment, Laysan discontinued her work as a lawyer in consultation with her employer. Despite multiple reintegration attempts. “I think if I had had the help of a professional, it wouldn’t have worked out like this. Then maybe my employer and I would have understood each other better.”

Other goals

At the same time, the disease also taught her a lot. She values ​​life and her health more, for example, and has also learned to set her own limits. “You start looking for other goals in life, another way to give meaning to your life.”

This is exactly why Yolanda shared her story. Yes, you find that exciting, and yes, it is weak, but: “It is essential to improve care in the Netherlands for young cancer patients. I would like to contribute to that. I see it, in the meantime, as a nice piece of legacy.”