It was an early Wednesday morning, the smell of spring was in the air, you know that fresh smell from trees when there are almost in blossom. Inside Rigshospitalet the windows were closed, but you could still looked out on the beautiful weather from the ambulatory I visited that morning. I asked the staff if they had any patients that had experience with home chemotherapy.. They looked at a whiteboard where the patient names where and when they had a treatment appointment. One of the nurses pointed gently her nose towards a lady that was sitting in something that looked like a flight chair drinking a to go coffee while reading a lifestyle magazine.. She had a red turban, red glasses and a purple shirt on, which gave me an impression of a strong power women, because she dared to stand out in the white and grey environment. The nurse said:
“I would imagine that Grete would be excellent for you to talk to”.
On that note, I went towards Grete and introduced myself as a Co-designer that would like to talk with patients that had tried home chemo treatment.. She smiled back at me with a strong and positive look in her eyes. I didn’t know where to place myself, but found a chair on wheels. When I was about to sit down a nurse came and said that she needed the chair, so she had a good working position when giving the treatment to the patients. We talked about the importance of a good chair for the nurses that was easy to move around and that could be adjusted, so the nurse could adjust her position very easily so it matches every patient. Both the nurse and Grete ask me to take a seat at the flight chair next to Grete, so I did..
Grete, a 53 years old teacher, is now on her 8th chemo treatments where 2 of them were home chemo treatments so far. The nurse inserted a needle in her hand for her to receive some liquid that helped her immune system after the treatment.
Grete Explained me, that she was one of the first patients to try home chemo treatment, because she lived so close to the hospital, that it only took her a few minutes to come to the hospital if needed. Her husband and daughter living with her, made it all possible, because her husband for example went out and did the grocery shopping, which she couldn’t because of the fear of catching a disease from all the people shopping there.
“I have a girlfriend that was send home with the chemo treatment as well. But she has no one living with her. So she had to use a rollator to go grocery shopping.”
Grete also pointed out the fact that she hadn’t felt alone at any point because of her family and her big group of supporting friends. But she was a little bit worried that her girlfriend was feeling alone with all these practical and emotional things she had to deal with herself. We had a brainstorm on how you could help this feeling of beeing alone and we agreed that Rigshospitalet could have a Facebook page for leukemia patients, where people could chat and arrange meetings in each other’s home. Grete explained how her rehabilitation with “Center for kræft og sundhed” gave her a new group of friends that were in the same life situation as herself, which gave her a lot of life quality. She explained how she made new friends there and shared thoughts about their life. When I ask her what specifically they were talking about, she said:
“I almost feels like vomiting when we have to talk about side effects from the medicine. When we patient talk with each other, we talk about everything else than the disease. Very often we talk about how to keep focus in the now. Often when I have received medicine on drop at the hospital I talk with other patients along these hours.. But we never really talk about our disease, just life in general.”
I explain her how we will redesign the treatment rooms for home chemo treatment at fifth floor and I would like to have her input on how to make it as homey and comfortable as possible. The first that pops into her mind is to hide some of all the medical devices hanging around in the room.. Her daughter and husband don’t like to come to the hospital, they feel like she is more sick when she is at the hospital than home. She shares the thought of how a room being less “Hospital like” could maybe help her daughter and husband to feel more comfortable at the hospital.
“Once my daughter came to visit me at the hospital, and she found it difficult to see me with all these machines and medicine around me. But then we talked about how it was a good thing, because it’s all there to help me. But when I’m home I’m not surrounded by all these medical things.”
But Grete doesn’t see all these medical devices herself anymore, for her it’s everyday life now, so for her it would be more for the sake of her family and friends. But then again, she still has some input, that would make her experience more comfy in this treatment situation. She express’ a need for warm colours, “not that it should be all crazy, but just a little more colour than today.” Also sounds can help creating an atmosphere:
“There could maybe be some music sometimes, but then it has to be classical”
Grete find the philosophy helpfull, when she has reflect on her life situation, therefore she would like to have some of these quotes in the new treatment/waiting rooms.
“Don’t be worried for the day tomorrow, the day tomorrow should worry about that. Every day has it’s challenges. Then live like the birds in the sky and the lilies on the field..” – from the bible.
About the furniture, we talked about something that was quite home-ish..
“This flight chair I’m sitting in, is maybe a little too much. I’m sure you can find something more chic but still comfortable.”
The rooms we were sitting in had no curtains or anything to separate the chairs from one another. Some of the other treatment rooms at the Ambulatory has this feature therefore I asked her, if it was important for her to choose between being separated from the others or not.
“It depends how I feel about getting my treatment, sometimes I like the possibility of using a foreclosure and separating myself from all other social activities going on in the room. Today they asked me how I would like to get my treatment so they could arrange the setting to the mood I’m in.”
Then we moved away from the hospital and into the home where Grete had tried to receive her chemo two times. Overall she had a good experience being at home, for example because she could eat the food she like, at the hospital she lost her appetite.
“I found it very difficult to find the appetite, it was the most strangest things I started to crave. For example I ate hønsesalat (chickensalat) for a whole chemo period..just hønsesalat, hønsesalat, hønsesalat….ha ha..”
She expressed no challenges in having the chemo bag in the shower, because they had a table just outside the bath where she placed it on. And when she went to sleep, she just had it in a drawer beside her bed. The challenge she had, was when the pump started to say “bib”.. “It said ‘bib’ so many times during my home chemo treatment that it started to cost me even more energy to go back and forth to the hospital, than if I had just stayed at the hospital.”
Every time she came to the hospital, she had to go through a list of procedures; She had to take her own temperature, blood pressure and blood test. Then the nurse came and took the results and analyzed if everything was as it should be.
“I was very slow to start taking my own blood test, but when I found out I could be faster out of the hospital, that worked as a big motivator for me. And then “vupti” I started taking my own blood sample. I even went down with my blood sample to the blood sample office, because it’s faster. And then I got some exercise as well..”
Grete had a positive tone in all the words she spoke. She had such a thankfulness in all her comments, almost like she couldn’t ask to change anything. She explained to me that she had decided to make the chemotherapy her friend and then she said with a glimpse in her eye:
“It’s not that I wouldn’t have been without the disease, but when it hit me, I had to embrace that destiny, which had made me feel thankful of life. I learned how to live in the moment.. The disease hasn’t made my life more rich than before… or the happiness of life.. I guess almost opposite. But you learn how valuable life is.”