She thought, “That's not true, my mother is fine,” and was troubled by the fact that the people around her took it more seriously than the people involved.
Mika felt some inner conflict as a mother fighting cancer. “I don't want my child to worry. I want to respond to their need for attention and be a 'regular mother'.” However, by coming out to her family, she was able to experience the warmth and bonds of her loved ones even more.
Riko says that due to the influence of charity programs and movies, the negative impression of cancer has become too large. “I want to spend time laughing with my mother in everyday life. She is so energetic that I sometimes wonder if she really has a disease.”
That’s why I want everyone to know what’s possible.” This story made everyone think about how to treat and interact with patients and their families.
“I don't have time to cry.” That’s what I swore to myself after seeing my husband break down in tears.
Sakai-san talking about the days when he fell ill
The second pair to speak was Hiroshi Sakai and his wife, Misako. Hiroshi works as an editorial writer for a major newspaper. His journey began when he would get out of breath simply walking up stairs. A medical examination did not determine the cause, but later he collapsed from severe abdominal pain and was urgently admitted to the hospital.
After undergoing repeated tests, he was diagnosed with small intestine cancer. Hiroshi was 46 years old at the time.
What Misako remembers vividly is the muddy color of her husband's face as he collapsed in the doorway at home. She thought, “This isn’t a trivial matter.” At the hospital, the doctor said, “We don't know the cause, but he has some kind of intestinal obstruction, so surgery is necessary.”
However, Hiroshi did not want to have surgery if possible. Out of fear and anxiety, he asked the doctor many times if surgery was really necessary, but the doctor angrily told him, “You might have cancer!”
After the surgery was over, Misako was told the results. The diagnosis was small intestine cancer, and the 5-year survival rate was around 10%. So, Misako asked the doctor, “Please don’t tell my husband about the results until he is discharged. I’m sure he won’t be able to handle the news.”
There would be times during Hiroshi’s hospitalization, such as at night, when he would be left alone, and Misako didn't want her husband thinking about his illness in those situations. Misako believed passionately, “After he’s discharged, I’ll be able to be close by and support him. That’s why I have to be strong.”
On the day of his discharge, Hiroshi broke down in tears when he learned the results, just as Misako had expected, but she did not shed a tear. “There is no time to cry. I have to support him,” she thought. They made a joint decision to work together to save Hiroshi's life.
Small intestine cancer is a rare form of cancer, with fewer than six cases per 100,000 people. Because of the low occurrence, this type of cancer poses greater challenges in terms of diagnosis and treatment than other types of cancer. Hiroshi said, “Because I have a rare form of cancer, it is my mission to live a long life and share information.”
I thought I had only a few years left to live, but I have been able to spend eight years with Misako. Hiroshi is working hard to expand the scope of “the parties” and to provide more realistic information about rare cancers.
“What is medicine to patients and their families? Let’s sit in circles and discuss it.”
Talking with patients and their families
After listening to the two pairs of speakers, the patients, their families, and the pharmaceutical company employees were randomly divided into six groups and formed large circles to share their impressions and also later provided further feedback through an online survey.
“While it is tempting to prioritize the effectiveness of the medicine, I want to create something with as few side effects as possible, with the long-term use of the medicine in mind.”
“I thought it was important to go and find out first-hand about patients.”
COMPASS member, Takayuki Kitazawa
“I want to think about the impact of side effects on family members, such as the fact that they have to be careful when eating together with the ill relative because the patient’s sense of taste may be affected due to side effects.”
Many participants said that the event gave them the opportunity to reconsider their views from the perspective of family members, which they had not given much thought to before, and about dealing with treatment and medication. It is necessary to expand the circle of “parties” and connect the stories of patients and their families to the work of pharmaceutical companies.
The 6th HC ended with a message from COMPASS member, Takayuki Kitazawa, saying, “It's important to make the illness your own problem, rather than just something that affects the patient. I hope that anti-cancer drugs will become ‘medicines of hope’. Let's make medicines that bring happiness to patients.”
Many people were seen listening to the stories of the two pairs with tears in their eyes. It was a day that gave people the chance to think about those affected by the disease beyond those who are fighting the disease, and to think about their own work.
Shigoto Soken’s Natsuko Yamada helped to facilitate the discussion with a variety of colorful graphics based on the idea that illness is not something that is borne by individuals but is something that is shared by society as a whole.