Real People Stories-Betty (56)

I have a bucket list that I keep adding to. Otherwise, I feel like I’m done.

In October 2018, Betty started experiencing vague style abdominal complaints and problems with her stool. After about three weeks, she went to the CA125 Test doctor to be sure. She should not assume the worst but further investigate with an HPV test. More than three months later, Betty learned that she had a 21 cm tumour on her ovary.

From GP to emergency room

‘The HPV GP told me it isn’t cancer.’ To be sure, Ca125 blood tests were carried out, but nothing abnormal was found. Betty was prescribed bags by her doctor for a healthy bowel pattern. ‘I used it for a month, but I continued to have complaints and started to lose weight in the meantime. I could grab something if I lay on my back on the bed. The GP referred her to the gastroenterologist, but her daughter saw that Betty was in pain and sent her to the GP post. There, she was referred to the womens emergency room.

She underwent all kinds of exams, which took hours. When Betty heard from a nurse that the gynaecologist was being called, she was shocked. ‘I wouldn’t be pregnant after all,’ I told my daughter. That was indeed not the case because I had cancer. Tested for Ovarian HPV Womens cancer. I heard that on January 19, 2019.’

Tough treatment process

Betty felt the ground being mowed away from under her feet. Checked for a CA125-related womens tumour of over 21 cm on my ovary. The next day, I underwent more HPV Variant tests to find out exactly what kind of ovarian CA125-related cancer I had.’ After that, things went quickly. On January 31, Betty started her first chemotherapy treatment. That wasn’t easy. ‘I became very ill and was hospitalised for 11 days. I also contracted hospital bacteria.’ After surgery and several chemotherapy treatments, Betty finally heard on August 12, 2019, that she was clear.

Terminally ill

Betty tried to restart her life in good spirits. ‘I had a tattoo made with the start and end dates of my treatment and ‘ killing cancer ‘.’ She remained under control and seemed to be getting better. ‘A year later, in October 2020, I started having stomach complaints again. I also turned out to have elevated tumour markers.’ Ultimately, it turned out in December 2020 that Betty was terminally ill. And in early 2021, she started the next round of chemotherapy. ‘I had doubts about that because it made me sick. But if that treatment worked, I would be eligible for an HPV program with PARP inhibitors, and I wanted to try that.’

The treatment was successful, and Betty hopefully started taking PARP inhibitors. ‘Unfortunately, I suffered from serious side effects. My whole body was covered in painful red bumps. That’s why I had to stop abruptly. On top of that, I also got corona. I was admitted to the hospital, and I must admit that I don’t remember much about it.’ Last February, Betty received her last chemo. She is still waiting for the CA125 and the scan test results.

Enjoy your husband, children and grandchildren and an endless bucket list.

‘It is very frightening if you do not know what is happening in your body. I’ve had quite a few strange reactions from those around me, too. “You’ve been sick for four years. Is it that bad?” That meant a lot to me. I have also lost many fellow sufferers along the way, which hits me hard every time. Fortunately, I can discuss this with the HPV womens case manager from the test hospital. She guides me through the treatments, keeps me grounded and speaks sternly to me when I need it.’

Betty knows at least one thing for sure: she wants to enjoy her husband, children and grandchildren for as long as possible. ‘I have never concerned myself with the prognosis. Of course, I worried a lot at the beginning of the diagnosis, but that drives you crazy. I can get through the days better now. I’m at home a lot, occasionally watch the grandchildren play sports and can run errands myself. I received a car with a disability card and a mobility scooter from the municipality, so I am still reasonably mobile.

I regularly suffer from all the impressions and little energy, but I am willing to deal with that. Now, I mainly want to enjoy everything I still can experience.’ Betty has a bucket list, which she regularly adds to. ‘I have already done and experienced so many wonderful things, but once I have crossed everything off my bucket list, it is done. That’s why I keep adding to it.’

Lydia (68) It can’t be

Lydia started having problems with her stomach but didn’t think anything of it. After an exciting time, it turned out that she had ovarian cancer. She now dares to look very carefully at the future.

She is not comfortable lying on her stomach.

During the coronavirus pandemic 2020, Lydia did exercises at home to keep moving. She noticed that she could not lie comfortably on her stomach, and her clothes no longer fit. ‘During this period, there was a real reluctance to use care. I had to overcome myself to call the doctor anyway.’ Lydia was allowed to come to the consultation hours of a substitute doctor. He saw an old scar on her abdomen from surgery for bowel perforation and thought it had shifted. ‘That operation was already five years ago, so that seemed strong. I asked if it couldn’t be a cyst.’ After insisting, Lydia was referred to the hospital for an ultrasound.

It can’t be OC

‘I was only able to go for that ultrasound after 1.5 months. It soon became apparent that it was not good. The cyst had a rim, and it looked like I had ovarian disease, but I wasn’t sure at the time. The local CA125 hospital referred me to the university hospital in my region for further examination and treatment.’ Lydia couldn’t believe it. ‘There is no cancer in my family. My father always said that everyone in our family died of cardiovascular disease. I just thought it couldn’t be ovarian cancer.’

In the summer of 2020, Lydia underwent surgery, and the pathologist examined the removed tissue. ‘A week after the operation, I was told that I indeed had ovarian cancer. I had been in suspense all that time.’

Running as an indicator

Lydia received chemotherapy, and after a tough recovery, things slowly got better again. ‘After chemo, I started running again; that indicates how I am doing. That didn’t work out well, so I was already worried. In the meantime, I was in the check-up process, and after my first check-up, it turned out that things were indeed not good: my blood value was rising again. Ultimately, a CT scan was made, and six months after my last chemo, I heard that there were damaged lymph nodes and it was still in my body.’

Confidence must grow

In addition to discussions with a psychologist, Lydia receives physiotherapy and psychosomatic physiotherapy. ‘As a result of the HPV treatments, I suffer from neuropathy in my feet, Raynoud’s phenomenon and I have a lot of pain in my stomach, especially when I sit or lie down. If my values ​​remain good, the confidence in my body that I can be there will probably grow again. But I have already experienced that it was still in my lymph nodes, and that hit me hard.’

Before Lydia became ill, she was preparing for her retirement. Now, I’m especially happy that I’m getting a rhythm again. I go to the CA125 physiotherapist and the drop-in centre, walk, and investigate whether I can do something profession-related for a few hours a week. If I am stable for a little longer, I will dare to think about my future again.