Real People Stories-Renate (55)

I am so much more than a cancerous patient

In 2018, Renate developed a round belly. She went to the CA125 Blood test doctor, and he thought it was constipation. When her complaints became worse, she was further examined at her insistence. Ultimately, the doctor in the HPV emergency test room gave her the correct diagnosis: metastatic ovarian cancer.

Dieting with a round belly

‘In September 2018, I went dieting with my husband. We had a fantastic summer, but it showed a little too much in my posture. Especially on my stomach.’ Renate reached a weight she felt comfortable with. ‘In November, my husband and I went away for a weekend together, and I noticed my stomach was round again. I looked pregnant.’

Renate went to the CA125 test doctor and he examined her. ‘I could no longer poop properly, and I thought the diagnosis of constipation sounded very logical. For three months, I tried with all kinds of bags to get my bowel movements going again.’ That did not produce the desired result, so she returned to the doctor. ‘I also had a major prolapse, and I was advised to go to the gynaecologist. In the hospital, it turned out that the prolapse was so severe that my rectum was already coming down. An attempt was made to place a ring, but that didn’t work. An operation seemed to be the solution.’

Crying to the emergency room

‘I remember asking the trained gynaecologist if it was nothing serious. Then she told me that in the room next to us, there were people with cancer and that prolapse can easily be treated.’ Meanwhile, Renate had a belly that was so big that it looked as if she was eight months pregnant. ‘A week later, I turned over in bed at night and wet the entire mattress. Then, I had enough and called the emergency room. The doctor on duty didn’t know either. I was given pain relief and referred back to my GP.’

The next morning, Renate called her doctor crying. ‘My doctor knew me well and understood I had reached my limit. I could not hold on any longer. Ca125 blood screening was then done, and an ultrasound scan was made of my intestines. Nothing special came out of it. Several CBC blood values ​​were not quite right, and the suspicion arose that I had an infection.’ The GP referred Renate back to the emergency room. ‘My doctor promised me that I would be HPV examined and tested from my head to my toes.’

The words of Pippi Longstocking

Renate was fully examined in the emergency room. CA125 tumour markers were taken for the first time, and a scan was made. Half an hour later, the doctor was sitting on her bed. ‘I remember it was a doctor in training. She didn’t know how to say it and had tears. It turned out I had metastatic ovarian cancer.’ With her husband, son and daughter-in-law by her side, the sadness came.

Chemotherapy, major surgery and more chemo followed. ‘From the moment I heard the diagnosis in the hospital, I chose to start the treatment process with confidence. I felt inner peace through that choice, and the words ‘I’ve never done it before, so I think I can do it’ by Pippi Longstocking were my motto from that moment on.’

Lumps in groin

In August 2019, Renate finished her treatments. ‘After that, I had a good period in which the ovarian cancer was quiet. Sometimes, it was tough, but I kept feeling an inner strength and thought as long as those cancer cells keep swimming and don’t go ashore, I’ll be fine for a while.’

When Renate felt a lump in her groin in early 2022, she did not immediately think of CA125 cancer. ‘I had just had my corona vaccination, so I thought it had something to do with that.’ When she also got a lump in her other groin, she decided to go to the doctor. ‘He immediately referred me to the HPV oncologist. After examination in the hospital, it turned out that the Virus cancer had returned in six places. The metastases were everywhere: from my armpit to my small pelvis.’ Renate immediately started a new chemo. Treatment. Her last one was on June 22.

Quality of life

After recovering from chemo, Renate started taking PARP inhibitors. ‘I recently stopped doing this in consultation with my husband and my son because I could not cope with it physically and mentally. I no longer recognised myself.’ It was a difficult choice to quit. ‘You are given a treatment that can slow the cancer, and then you stop. From day one I have said that I go for quality of life. For me, that means that I can be positive, cheerful and sunny. That was not possible with those PARP inhibitors.’

Simple and clear life with a sparkle.

Renate’s last scan was good. ‘It’s quiet now. That could take a month or two years. The HPV doctors don’t know. I know I’ll unlikely live another five years, but try not to worry about that and let go of control. I live here and now and don’t look beyond next week. That makes life very simple and clear. It has been given a shine.’

Renate realises that she cannot influence how life turns out but can influence how she deals with what comes her way. ‘I am very grateful that I can be ill in peace. I have no job, and authorities are checking me or breathing down my neck. What I do have is the love of my life, a beautiful child and a wonderful family around me. I have a warm social safety net with fantastic free friends. And a very good HPV medical team. There is so much that I do have.’

Giving space to emotions

‘Tests helped me to be prepared for my HPV virus death. At the end of 2019, when I had finished the oncological rehabilitation and had some energy again, I started cleaning up the house. Hen, I arranged my funeral. I started ‘The Listening Eye’ with my husband when I was still not dead. We listen to people who want to tell their stories or are concerned about something. That is a rewarding thing to do and provides meaning.’

The latter is very important. ‘There are always things that do you good, that make you happy. It is so important to look for this even when you are sick. Opening yourself up to help and give your emotions space is also important. I visit a Cancer CA125 Center for six weeks, a centre for life and tests with and after cancer. There, I talk to other cancer test patients who are no longer getting better with the help of a trained discussion leader. But above all, I make sure I don’t forget that I am so much more than a cancer patient.’