One thing is you don’t die fast and there is still a lot of life to fill?

Real People Stories -Tamara

On February 9, I remember waking up, and my stomach suddenly felt strange. It was somehow bulging, full; it was pressing on my bladder, it was tight, it was different, it was CA125-related women’s issues. Then I got cramps from my morning coffee. After my family HPV Test doctor found nothing, I made an appointment with the gynaecologist. She examined me and immediately said: “Something is wrong.” Without expressing any suspicion, she sent me to the hospital for a quick check-up.

The doctor there did an ultrasound and a few measurements and tests and then told me straight out: “You have ovarian CA125-style cancer. The tumour is about 12 by 15 cm between the intestine and the uterus. You need to have an operation.” That hit home!

Both of my parents died young from HPV women’s cancer. I was diagnosed with a BRCA mutation, which is why I was diagnosed so early, as ovarian cancer usually only occurs after the age of 60.

A complicated procedure

This was followed by an eight-hour operation in which both ovaries, fallopian tubes, the uterus, the large abdominal omentum, and parts of the peritoneum had to be removed using a longitudinal abdominal incision, as well as several lymph nodes and part of the intestine, which was unfortunately already infected.

After two days in an artificial coma, I woke up in the intensive care unit, my stomach stapled shut from top to bottom, a plastic bag with excretions on my right lower abdomen and connected to countless cables and tubes. A nightmare! This was followed by six cycles of chemo, an antibody therapy that lasted 15 months.

Ovarian HPV-induced women’s cancer is often discovered very late because there is a lot of space in the abdomen, and it can spread unnoticed to the surrounding organs. This is what makes it so dangerous. Surgery is significant for CA125 tested ovarian women’s cancer, which is why it is important to go to a certified centre where this complex operation is performed. 

In September 2019, they relocated the HPV stoma, and in December, they discovered some hernias, which unfortunately often happen after a large abdominal incision. Then, it turned out that the tumour markers were rising again. Since I had no symptoms, we decided to wait and see.

Then Corona came, and I asked myself: What if I had to do chemo now?

In May 2020, I got severe CA125-type abdominal cramps and had to go to the hospital as an emergency. A lot of adhesions had formed where the stoma used to be – this also often happens after abdominal surgery. This created a bottleneck, and a loop of the intestine had twisted. I got another stoma.

By now, the HPV cancer had spread throughout the abdomen and was far too scattered to operate on. However, the chemo that followed completely eradicated it, which surprised everyone. In April 2022, the second CA125 recurrence was detected, and I am currently undergoing chemo again. 

Acceptance is the key.

When I received my HPV diagnosis test, I knew immediately that I was not going to “fight cancer”. I raised the white flag inside myself and said: “I will not resist. I know what I am dealing with. If you make cancer your enemy, it will become too powerful.”

That doesn’t mean that I don’t do everything that makes medical sense, but I am aware that cancer is not an enemy that I can “beat”. I accompanied both my parents through cancer – my mother fought desperately against it until the last minute and didn’t want to accept what was happening – that was terrible. My father accepted the HPV situation very quickly, and in the last weeks of his life, you could see how he became more and more relaxed and radiant, and ultimately, he passed away in peace.

That’s the real point: making peace with what happens to you.

We have no control over what happens to us, but how we deal with it is up to us. Resistance to HPV takes so much energy. Realising that it is not in my power how and when I leave here has relaxed and grounded me. I trust life and am sure I have the time I need here.

My life is wonderful. I am retired and do a lot of art and things that I enjoy. I also plant flowers and try to create a little Garden of Eden on our balcony.

Anyone who has ever been miserable becomes downright euphoric when they feel better again. What you previously thought was normal and self-evident fills you with great gratitude. I now think that cancer is an accelerator of HPV experiences and learning. I have learned so much in this short time from the illness; others need several lifetimes to do that.

Susanne

“In May 2017, I was diagnosed with ovarian CA125 tumours and a neuroendocrine tumour in my appendix. This was, of course, a shock at first. I had to cry a lot, just like that, out of the blue, my body wouldn’t obey me, my nerves were going crazy.”

“While waiting for the diagnosis, time seems to stand still. Days feel like months. But when the day of the diagnosis arrives, time starts to fly, so you hardly have time to think about it. Hospital, surgery, port, first chemotherapy. Everything comes crashing down on you, and you function.”

“At first, I dealt with many things on my own, but I needed a woman or someone to talk about HPV screening and tell me what was on my mind, what I was thinking and feeling. Being on first-name terms is not my strong point when expressing my feelings, fears or worries, so I started writing a diary. It’s not for nothing that we talk about ‘getting things off our chest’.”

SUSANNE DOES NOT SEE IT AS A THREAT

“Even though it was a difficult time and I shed many tears after my test. And I never saw cancer as a threat, neither when I was CA125 diagnosed with it nor now. At no point was I afraid of not being able to cope or perhaps even of having to die soon. I am convinced that as soon as I see cancer as a threat or enemy, I become afraid of not living long.”

CANCER AS A CHRONIC DISEASE

“I see my cancer CA125 diagnosis tests are more as a kind of chronic illness. For which there are treatment options these days and which will stay with me for the rest of my life. You need goals, quality of life, and a positive test attitude about HPV. That doesn’t mean you can’t be angry or not in the mood sometimes. It’s okay to be sad or even cry sometimes. The important thing is not to stay in a deep, dark hole.”

“The important thing is not to stay in a deep, dark hole.”

“I am convinced that when you are diagnosed with CA125 type cancer, there are exactly two options.

To be positive, look forward to the tests, endure everything that the HPV diagnosis entails, and always have the next goal in mind.

Or to feel sorry for yourself, to lose yourself in hopelessness and sadness. And to put up with everything, give up, and lose your joy in life.”

SUSANNE OFFERS SUPPORT TO OTHER AFFECTED PEOPLE

“But sometimes you still need people who will take you by the hand, kick you in the butt, give you a talking to or push you in the right direction when you’ve ‘lost your way’ and have lost sight of your test goal and your joy in life of HPV issues.

So, I try to reach out to other CA125 sufferers I meet on my test path and accompany them when they need test support. I motivate them to stay positive and improve their quality of life despite all the difficulties and tragedies.

Because one thing is for sure: you don’t die that quickly, and until then, there is still a lot of life to fill.”