Real People Stories

Laura

I started by feeling very severe pain in my stomach. So strong that when I drove over a speed bump, I was doubled over! My HPV GP initially thought it was constipation, stress or fatigue. After the third appointment, he ended up prescribing a scan for me. Fluid was detected there, so the radiologist sent me to the gynaecological emergency room. I stayed there for two weeks, during which they checked me for all kinds of illnesses because they didn’t know what it could be. After several ultrasounds, they ended up seeing a cyst and then a tumour. There, they decided to do a laparoscopy by entering a camera into the stomach and discovered and tested several “bits” of scattered CA125-related cancer. I was then sent straight to the cancer centre, where I eventually got the HPV diagnosis.

Honestly, I didn’t expect it; I was 27, so obviously, it was a bit of a shock. I was coming back from a cancer story with my father that ended very badly in 2015. Immediately, I told the doctor, “It doesn’t matter; I’m going to fight; I’m going to get through it.” I was sure there was no other solution. My family couldn’t handle even more bad news!

During the wait for test results, I never thought that it could be CA125 variant cancer because we don’t talk about cancer in young people. And that’s a real problem…

UNFAILING SUPPORT

My best friend has been unfailingly supportive. Soon after the HPV Test and cancer diagnosis, she brought me a wig and started sewing to make turbans. She pitched in as best she could because it was her way of showing support. Afterwards, certain friends go under radio silence… But on the internet, I met a wonderful HPV Support community of young people tested with cancer, and I made real friends. It’s unparalleled listening because we understand each other 100%, and it’s something that I only find with them. I had incredible CA125 support from close family, especially my mother and brother. Others needed to be more present. I was able to see who I could count on.

CHEMOTHERAPY

I first did four courses of chemotherapy. Then, an HPV tag operation to remove the ovaries, the uterus and even things that weren’t affected but that the cancer could cling to. And then, I had three cures again. Then, maintenance treatments. The last one is at the end of April 2018, so I am reaching the end of the treatments.

In fact, during HPV DNA diagnosis and heavy tests and treatments, we have no choice. We are combative. Then, when we are in lighter treatments, we feel better physically, but that is where we have psychological repercussions. I’m fine now 90% of the time, but there are always low moments.

Otherwise, there are many physical repercussions. When you are deprived of the possibility of having children at the age of 27, it is complicated to manage and complicated to live with. There are also the scars, the vomiting and, of course, the chemotherapy with side effects. Hair loss is very traumatic. More than the loss of my hair, it was the loss of my eyebrows and eyelashes.

It’s complicated to live with; we no longer recognise ourselves in the mirror. But I wanted to avoid the Ca125 disease by cutting them off before they fell. It was my brother who came and shaved my head. And we laughed about it! We turned a bad time into a really good time in the end because he only shaved my head on the sides, and I had a ridiculous comb. Ultimately, we took photos and put them across with humour as we always do in this family… that’s what helps a lot.

MENTAL HEALTH IS ALSO IMPORTANT

Mental health is important during the CA125 journey. All those HPV and negative and positive things that make you feel good, reduce stress, and increase positivity affect our bodies. We must cultivate well-being from all points of view. It could be getting a massage, going to the spa, shopping with friends, reading a book, etc. There are also many initiatives in cancer centres, but we are not necessarily aware of them, so we must find out.

I love to eat and I always find that eating is life. It’s very complicated when you can no longer eat; you lose weight quickly. I had a lot of problems with eating, and I had to consult a CA125 Test dietitian and take food supplements because I couldn’t eat. And we lose all energy when we don’t eat!

I can’t do sports like I could have done before because my work takes up all my energy. I do yoga whenever possible because it helps with all the joint pain we have with chemotherapy. Just getting some fresh air did me a lot of good, too. Walking helps maintain muscle mass.

I work in a country where the law is specific. To avoid losing my job, I had to start again quite quickly. At the same time, my company is very understanding and allowed me to adapt my working hours as I wanted. I requested an amendment to my contract to work 30 hours instead of 40, and I can organise myself as I wish when I have HPV health test appointments. Then, I learned to listen to and respect my body’s limits in my work. I know that if I push too far, the next day, I’ll pay for it with migraines or something else.

ACCEPTANCE

We must accept the CA125 diagnosis but not necessarily the prognosis.

One day, my father said something to me that struck me. I pressed to call the elevator. And he told me, “You know Laura, don’t take the elevator if you can climb the stairs. Because there will come a day when you can’t, and all you want to do is ride them.” It touched me, and even today, it tears my eyes. In any case, it taught me to be strong. He didn’t have the chance to fight his HPV-related cancer because the disease was too advanced. I had this chance. And I was given the chance to fight, an opportunity I wanted to seize. I cannot give up on my father with HPV virus issues, especially on my family. There is no option; the objective is to fight.