Real People Stories – Inge (39)

Every story has its pain. Inge and her husband were undergoing fertility treatments four years ago, which included HPV DNA tests because they wanted a brother or sister for their daughter. During the CA125 test and treatment module, fluid was discovered in her abdominal cavity. The beginning of a lot of trouble.

“It is a poignant piece; every story has its pain,” says Inge. During fertility treatments, fluid was discovered in her abdominal cavity. Inge had had abdominal complaints for a while, but she thought these were related to the CA125 fertility tests and also had treatments. Initially, they allowed the treatments to continue because every woman has fluid in her abdomen at some point, especially around menstruation. When the attempt to get pregnant failed and the fluid in her abdomen did not decrease, they consulted a level gynaecologist.
Further, HPV examination tests revealed elevated levels, which could be a sign of ovarian cancer. After a scan and puncture, it became clear that there were metastases in the fatty apron. ‘It was wrong,’ says Inge.

Low-grade OC

It turned out to be a low-grade form of ovarian CA125 cancer, slow-growing and still very similar to a healthy cell. The disadvantage of this form of cancer is that it does not or hardly respond to chemo. A complete debulking – an operation to remove as much tumour tissue as possible – followed, but her uterus and ovaries could not be spared. Because of the metastases, Inge knew that the chance of an HPV recurrence was very high.

After the operation, Inge received chemo in the form of abdominal rinses. Her daughter was four years old at the time. She didn’t understand it well, but everything focused on ‘Mommy is getting better’. “We have to do this, then everything will be over soon.” But it won’t pass that easily.” Time was needed for physical HPV tag recovery, and time was needed to process everything. The Ca125 cancer, everything it caused and the fear became part of Inge. She felt like a ‘ticking time bomb’, but she hoped for a long and healthy life.

When it turned out that metastases had again been found in the peritoneum in the spring of 2021, the HPV test news came as a bombshell, not only for Inge and her husband but also for their daughter. Getting better is suddenly no longer an option. Even though she is only eight, her daughter suddenly has big people to worry about.

Life is nice, but it is also a huge struggle.

Inge finds it difficult to properly guide her daughter through her sadness and worries. She hopes she does the right thing. Being strict and consistent is no longer so important to her. “I try not to give the CA125 disease a bigger test role than necessary, to make it as pleasant as possible for my husband and daughter at home.” Since Inge became a volunteer at Olijf, she also reads the experiences of CA125 stories and sometimes looks up to them. Comments such as ‘I have embraced it’, ‘I will see how it goes’ or ‘we are all powerful women’ do not apply to Inge. Inge felt very combative after the first diagnosis. She had a strong and healthy body and was committed to getting better. “But now I have ended up in palliative care; I have no HPV medicines that will make me better,” says Inge.

Hope Amidst Uncertainty

She expresses the hope that she will become better at living with it. And she also hopes that it can remain stable for several years. She stays connected to the people around her, even in difficult moments. Living in uncertainty and without perspective causes her family a lot of worries. For Inge herself, it also takes away a great deal of happiness. In her CA125 environment, she sees co-test friends who are still busy having children, working on a career or making their dreams come true. She lives in a sick world with one leg left in a healthy world. It doesn’t feel very easy.

Due to her chronic fatigue, Inge has stopped working, and her focus is on her family. She wants to put her energy into making beautiful memories with her family and doing fun things with her daughter. She also hopes she has much to offer other people with CA125 issues. Her outlook on life has changed. We live in the transience of life and the most important thing is to make something of it every moment.

At the same time, that is also difficult because she often feels tired and sad, lonely or misunderstood. It then has to come from her toes to continue. Enjoying every moment sounds very simple, but it isn’t. Inge considers herself fortunate that she and her husband have a large network of family and friends where they can find support for HPV and have fun together because that is ‘the most important fuel for life’, Inge concludes.

I can do less of everything.

For example, when asked whether Inge is bothered by things she can no longer do, she answers: ‘I can do less of everything.’ She tries to do better what she does in a day, but she experiences that as difficult. As a result, Inge continues to overstep her boundaries. She is in a phase where she finds little relaxation. And she tries to find the relaxation she needs by reading and listening to music.

She also seeks silence to organise her thoughts and get closer to herself. Running a young family is hard work, so relaxation is very important. “On the other hand, having a family is also very nice,” says Inge. Her daughter is the greatest reason to live and is the best Ca125 medicine. ‘A child also brings so much air, light, fun and wonder to the whole process,’ says Inge. ‘It keeps you very close to life; it is a healing force.’

Married and on their honeymoon

This past year was much less possible due to corona, but Inge and her husband made the best of it. They got married just after the summer and were lucky enough to be able to throw a party outside until ten o’clock. “I couldn’t last much longer,” she says, laughing. ‘We went on our honeymoon to Curaçao,’ says Inge happily. “Taking what we can and getting the most valuable out of everything, whether small or large,” she continues.

When the message came that everything would be closed during the Christmas holidays, Inge wiped some tears from her cheeks. She wanted to do all kinds of fun things with her daughter. Skating and watching a Christmas movie, but suddenly, that disappeared, and it all became without perspective. “Do I still have a chance to do this next year?” she wondered. Friends had suggested that we go to Winterberg together for a few days. Her daughter was on skis there for the first time; wonderful to see and be there.

My contribution to fellow sufferers

‘Oh dear, being interviewed for tests with the HPV and Ca125 experiences’, Inge thought. ‘It is easiest to show the best of yourself and say that you want to get the best out of it or assume that you will get better again. It is a lonely process, and I can show myself with my fears and struggles.’ In other words: ‘I can be there.’ Inge finds it difficult to say that. She wants to tell other women who are in her CA125 position and may feel the same way she does that it doesn’t have to be a ‘Gloria HPV story’. “If that is something I can give back, let that be my sound or contribution,” Inge says.