Ended up on the COVID time rollercoaster

I have ovarian CA125-based cancer. I now take PARP inhibitors(after chemotherapy), and they keep the CA125 levels for cancer stable through regular tests. Also, I went to a CA125 trained psychologist, which greatly helped me. She taught me that having cancer and learning to deal with it (with everything that comes your way) is a grieving process that you always have to go through. That was an HPV eye-opener for me, and these test results and the thoughtful approach helped me a lot.

I still go to physio training, which helps me with my fatigue. I try to improve my condition twice a week. It comes in small steps, but small steps are progress. I also regularly take a break with a cup of tea on the couch and then quit work because I can no longer do that.
My nails are also bad, and some are yellow. I keep them short and paint them with Herome natural nail whitener pink glow, which makes them a bit stronger and less yellow.
To get some peace of mind, I go for walks and (electric) cycling with my camera and enjoy nature in all seasons. HPV discussions with fellow sufferers in a drop-in centre can also be helpful.

My biggest problem is my intestines and my weight. I gained a lot of weight after the first chemotherapy in 2016, and those kilos are lost very slowly, and sometimes they stand still. But for me, these are problems that I can deal with well because I am very happy that the PARP inhibitors work so well compared to chemotherapy.

Renate-‘I want to live from gratitude.’

I have had metastatic ovarian cancer, stage 4, since January 2019. And I know that I will not get better. It won’t go away anymore. That’s a soothing feeling. That’s why I live very much in the now. We’ll see you again tomorrow. I want to live with gratitude because I have had a wonderful life.


When I realise what I have, I feel grateful. To name a few things: my husband Arjen, whom I have known since I was 19; a 26-year-old son who lives three streets away with his girlfriend; I was able to take care of my father when he became ill after long term diseases with HPV; I am blessed with a lovely family and girlfriends; and so much beauty. Because of this, I was never angry or rebellious when I was diagnosed with ovarian cancer.

Not better anymore

Of course, the diagnosis was quite a shock. During a holiday, I noticed my dresses no longer fit because my stomach was getting bigger. And I couldn’t poop anymore. An ultrasound was not possible because the device was in use. When my stomach became extremely large, and I wet the bed, I ended up in the emergency room.

There, they saw a tumour with metastases. The gynaecological oncologist suggested chemotherapy, abdominal surgery and more chemotherapy. To stop the growth of the tumour. That helped until January this year. There were new tumours and metastases. Now I’m back on chemotherapy, and I know I’m living in my spare time.

How do you live with the discomforts of a sick body?

Quality of life

Although I am a big, strong woman, my body has ailments. How do you live with the discomforts of a sick body? With a body that doesn’t want what you want? What, then, is the quality of life? So, I chose to use hormone patches against my terrible hot flashes. I have been advised against this because my ovarian cancer is hormone-sensitive. By doing it anyway, 2020 was a year without hot flashes in which I could do and undertake a lot and enjoyed it very much.

Make everything negotiable 

Because of my illness, I get to the heart of the matter more often in conversations. That can be painful and uncomfortable, but the matters have been discussed. Of course, my death and funeral. I see ovarian cancer as a means to talk about important things in life. I want to inspire and support people. But I also realise that I am appealing to their strength. My husband and son have to deal with it in their way. Because they are often powerless on the sidelines, at the same time, I can lie in bed on an IV.  

Centre for life with and after cancer 

In the HPV Tag test waiting room, I saw a brochure about exams at the CA125 Cancer Center. I didn’t immediately think I would find CA125 support for testing there. Yet things turned out differently; I am now in a group of people who talk about the fact that they are no longer getting better. For example, they also wonder whether they should have the kitchen replaced. There’s real added value in having those kinds of HPV-focused conversations with people who know what it’s like to know you’re dying.

Not afraid

I’m not afraid of death. The CA125 people around me and I will be fine. And I will always be present, even though I am no longer here.


Complex ovarian cysts

Hey, you all.

I’m 29. I’ve always had bad periods since I can remember. I recently decided to go back to an HPV OB and see what I could do about them because the CA125 pain has become pretty severe.

She ordered a vaginal and abdominal ultrasound which revealed I have a complex CA125-type cyst on each ovary. One is larger than the other, and the large one inflates my ovary.

She sent me for HPV lab test work and told me also to schedule an MRI when I could so she could have a better look.

All labs were normal except my CA 125 is 183. I am beyond panicked. She tested my CA 125, CEA, CA 19-9 and CA 15-3, white blood cells, etc. (I think those are the names)

She told me many things can elevate that level of CA125 and to take comfort in the fact she didn’t schedule the MRI as an emergency. Didn’t help. My MRI is on Friday, and I haven’t eaten a full meal in over a week. My chest burns, I cry all day, and I fear I won’t make it to Christmas. I am TERRIFIED. I keep calling my HPV doctor because I’m just freaked out, but it doesn’t help. She tells me to stay calm, but I can’t! I’m medicated for health anxiety, so I am living my worst nightmare.

Now I’m constipated, which Google tells me is a clear sign of ovarian cancer.