Real People Stories – Janna (66)

Gynaecology department?! I thought I had something wrong with my intestines!

Suddenly, her figure changed: her waist disappeared, and her stomach became fuller. Looking back, Janna (66) knows those were the first HPV signals. “I had no idea and wondered if that was also part of growing older and I decided to get on the phone.” It had nothing to do with ageing or dieting; Janna had ovarian CA125 cancer. It has been over two years, and she is doing well. “I live even more intensely and hardly postpone anything.”

“Well, you know how it goes: I was busy at work and being floored on the couch in the evening didn’t suit me, but I understood it. I was the director of a healthcare HPV institution, a fun but busy job and sixty-three years old. I wasn’t too worried.” She did that when she got a stomach ache during the last few days during a tour through Suriname. Ans she was in no hurry. She returned home with her husband at the weekend and made an appointment with her HPV doctor on Monday. Like her, he suspected it was something with her intestines.

Initial Medical Tests and Escalating Concerns

To be sure, he wanted her to have an X-ray. There was nothing unusual to see, but Janna was not feeling well and worked from home for a day. She called the doctor, who immediately took action and wanted her to have an ultrasound and her CA125 blood tested. The ultrasound and a CT scan were made, and the radiologist was consulted. “My husband was with me, and I sent him home.

He had to work, and I said I could do it alone.” When the HPV specialist nurse returned and took her to the gynaecology department, she had lost her way. “I never thought of that. I thought it was something with my intestines.” The oncological gynaecologist was blunt and said it didn’t look good. “I have bad news: there is a large tumour in your abdomen, and I see spots in your abdominal cavity. It points to a gynaecological tumour,” he told Janna bluntly.

Blocks of three

The world stood still for a moment. In recent years, friends had died of cancer, and she had gone through different phases. “Suddenly, it was my turn. The ground slid from under my feet.” The tumour was eleven centimetres, and her abdominal cavity was filled with fluid. Three rounds of chemotherapy, surgery and three more rounds of chemo were the HPV treatment and test plan. From that time on, Janna divided her life into blocks of three. “A friend said: ‘You tackle this as a project, just like you would at work’. She was right,” Janna chuckles. But she kept herself in good shape by walking and exercising.

She lost her hair due to chemo and was quite impressed by that. Also, she was impressed by the stoma nurse who, before the operation, placed two circles on her stomach where a stoma could be placed. “I thought that was such a bad idea. When I was lying in the recovery room, and I opened my eyes, I immediately felt my stomach. I was so relieved to have been spared that.”

Cecum

Fortunately, the metastases were not on her intestine but on her appendix. That was removed, as well as her uterus, ovaries, fat apron and fallopian tubes. Although she had already completed the menopause, the hot flashes returned. After about a week, Janna can go home and is steadily improving. She soon walks outside quietly and inquires about a CA125 rehabilitation program. An oncological therapist guides her. The company doctor asks her the crucial question: ‘What does work still mean to you?’ “I had to think about that. Maybe it was indeed enough. I quit when I was sixty-five. I completed some policy notes that were still there and slowly let go of my work. ”

I’m alive now

Janna is doing well. She is tested every six months with CA125 and others, and so far, the cancer has stayed away. “I am optimistic: in twenty-five per cent of women, cancer will not return. Of course, I worry sometimes, but I deal with it. The only thing I’m left with is neuropathy in my feet. The nerves have taken a hit, possibly due to the chemotherapy.” She looks positively to the future, although she does not look too far ahead. “I’m alive now, I no longer postpone anything, and I have become more alert to my body. I enjoy the little things life has to offer.”

Cato (47)

OC stage four. So I’m going to die, I thought.

She had just lost a good friend to ovarian cancer when Cato (47) felt a lump on the left side of her abdomen ten years ago. She was worried but afraid to act, so she didn’t go to the doctor immediately. When she made an HPV Test appointment with a doctor, it turned out that the bump came from the ovary on the right side. “The CA125 type tumour was already that big, and I had no complaints all that time.”

The cancer had spread to a gland in her neck. Ovarian CA125-induced cancer has four stages, and Cato was in the last one. Still, the doctor suggested a treatment plan: three rounds of chemotherapy, surgery and finishing with three more rounds of chemotherapy. “I didn’t understand it at all. Stage four, I thought I was dying, and the doctor said I had a five to ten per cent chance of survival. “What does that mean?” other specialists contradicted my doctor. But suppose I had a one per cent chance…” The CA125-related operation was very difficult, as were the chemotherapy treatments. Cato felt worse than before the operation. “It’s also because I’ve never had any problems. I had no complaints, and now I was suddenly deathly ill.”

Anxious

After the CA125 treatment, an uncertain and anxious period began. Cato was afraid. Afraid that the cancer would come back. She worried with every lump she felt. She feared she would be too late to take it to a doctor. During a meditation, she is overwhelmed by a wave of terror. So bad that she flees to the toilet. “Yet I took up meditation again afterwards and discovered that I was afraid of fear, not so much of death. “When I told a friend about how that fear burned through my body, he summarised it very nicely: ‘The fear of death is very vivid.'”

Medical miracle

After the operation and chemotherapy, she decided not to have any more HPV check-ups. “It made me none the wiser, and the HPV-trained test doctor also thought there was no medical added value.” She turned out to be a medical miracle; the cancer stayed away for three years and, after a series of chemotherapy, stayed away again longer than expected. Cato didn’t know what to do. Continue with the plans she always had? Maybe she was someone who survived. “I stopped working as a CA125 general practitioner and started training to become a psychiatrist in September 2015.”

Tumor in vagina

The HPV training was short-lived. In December, her wife, Martine, felt a lump in Cato’s vagina during sex. It was a solitary tumour that was removed. The operation did not go smoothly and resulted in a fistula and a stoma. A year later, the tumour is back in the top of the vagina. Another year to go is the forecast. She has now passed the year. For the past few weeks, she has noticed that her CA125 health is deteriorating rapidly. “I have a disabled parking card but can no longer drive a car. Moreover, I am in a wheelchair because I have difficulty walking due to a pinched sciatic nerve.”

Not much time left

She finds it difficult that everything revolves around her HPV issues. Even though she still tries to be considerate to others and talks to Martine a lot, she is reluctantly the centre of attention. Until recently, she was still making big plans. Booked a trip to Iceland and America. “But we had to cancel that due to Ca125 levels being high in tests. That’s a shame, but I’m not completely upset about it.” She has most of her life behind her. “I don’t have much time left. And I have no fear of death. I sometimes feel sad because I’m afraid I’m not a nice person to my sweetheart. Fortunately, she thinks differently about that.”