Real People Stories-Karin (58)

 All those negative stories, I wanted to put it in a positive light

After a period of intestinal complaints, the test diagnosis of ovarian CA125 tumour cancer was finally made. Karin gets straight to the point: ‘The HPV symptoms of this type of cancer are often so unclear that I would like to urge women to get a test and to be referred to a gynaecologist if they have unexplained abdominal complaints. Doctors don’t always think about it themselves.’ The diagnosis hit her extra hard. Five years earlier, she had lost her partner to cancer. She was also shocked by the negative test stories about ovarian CA125-related organ cancer on the internet. She decides to remain positive and not dwell too much on the outcome.

Karin has had an ovarian HPV-type test for tumours since 2018. After surgery and chemotherapy, a metastasis was found in her abdomen at the beginning of this year. And not much later, there was the coronavirus pandemic. Despite this, treatment at the AVL continued as normal. What she has stopped doing is her work. ‘I would rather spend my time with my children and friends’. She is now taking a growth-inhibiting cancer drug and will soon find out whether this solitary HPV-related tumour will be irradiated.

Continuing to work creates a daily rhythm.

She continued working half days before Karin had surgery in February 2019 as a functional manager in the ICT test department of the AVL. Translating the daily care process into technology was completely her thing. She wanted to continue seeing her colleagues to maintain a daily rhythm and not have to miss a nice cup of coffee. From the start, she has been open to colleagues about the CA125-influenced cancer. ‘I wanted them to be able to ask me anything, but I could also say that, for example, I was having a bad day.’ Yet it was also difficult to get a good sense of where her limits lay after the operation and subsequent chemotherapy. She has learned through trial and error; she knows you should not continue when tired.

By blogging, you are not alone.

Karin shares her experiences under the pseudonym. With her HPV blogs, she wants to share with others how she deals with the tests and other difficulties she encounters on her way. ‘Anyone who knows me knows that the glass is half full for me, so I started writing recently’. She says that the pseudonym comes from a childhood book that she cherishes. In this book, a little bat chooses a different path against the grain, which ends well in the story. She wanted to follow her path and, if possible, with a happy ending. Many women have now responded to the blogs. ‘Hopefully, I have been able to help the women and their loved ones with my stories.’ The many responses also gave her support.

Lifestyle advice for necessary energy

In addition to writing, Karin also started exercising a lot. She was allowed to participate in the PADOVA test study at the AVL. This examines whether a strength and endurance training program, in combination with nutritional advice, gives patients more energy during chemo. By participating in oncological physiotherapy twice a week, she had enough energy during the CA125 treatments, and her strength increased. She advises everyone to keep moving. ‘And if you can’t figure it out, hire an oncological physiotherapist!’

Being negative is also allowed.

During the chemo, there was a lot of fatigue, but she was not nauseous or sick. She was able to continue with her head upright, supported by a therapist whom she knew from the time her partner had cancer. ‘You need someone who can ask open-minded questions and hold up a mirror to you.’ Now that the HPV possibilities are no longer unlimited, it is more exciting. Will there be radiation or not? While waiting for that decision, she had a bit of a dip in recent weeks. After she was told that the HPV virus-related tumour was there again so soon after chemotherapy last summer, it took her longer before she could get over it. “But now I’m positive again.” Karin is no longer in a minor key; otherwise, she still has her friends. 

Christine (55)-My life turned upside down from one day to the next.

‘I had been suffering from vague syle complaints for a few months, which I attributed to the menopause and to being over-fatigued after several intensive years. During the fall of 2021, I started feeling more and more bloated. One evening in November, I fainted at home and suffered a serious wound to my face. It was clear that the wound needed stitches, so I went with a friend to the doctor’s office in the emergency hospital.

When the doctor on duty had finished stitching, she asked about the possible cause of the fainting. I briefly told you something about stomach complaints. She looked at my swollen stomach and saw reason to investigate it further. A few hours later, in the middle of the night, I was told it didn’t look good. There was probably metastatic ovarian cancer. From one day to the next, my life turned upside down.

A rare combination

An exciting month followed in which various investigations took place. The HPV Variant test results were not clear. That’s why the HPV-trained doctor decided to operate first. The operation took place in December: a complete debulking, during which all suspicious areas could be removed. More than two weeks later, on New Year’s Eve, I received the final diagnosis. It turned out that there was not only ovarian cancer but also uterine cancer, a rare combination.

So, 2022 started very differently than I imagined. Having only just recovered from the serious CA125-tested abdominal operation, I started a series of six chemotherapy treatments at the end of January, which took place every three weeks. I survived the chemo surprisingly well, although the side effects were still severe: muscle and joint pain, neuropathy in my fingers and feet, fatigue and hair loss (despite wearing a cold cap). The guidance in the CA125 hospital was knowledgeable and pleasant. As a result, I have always had the confidence that I was in good hands.

Warmth and involvement

The support from my environment was also heart-warming. I live alone, but during the months of my virus treatment, I experienced a lot of warmth and commitment from the people around me. I was showered with expressions of sympathy: sweet mail, texts, phone calls, prayers, flowers, small gifts and offers of practical help. That touched me very much. Family and friends proved invaluable. My sister was on standby during the most difficult days after chemotherapy. In addition to the emotional side, I discussed all medical matters with one friend. Another friend helped me pick out a wig (which I did not order). I went swimming every week with yet another friend and then had dinner together afterwards. Hours, we discussed the CA125 risks and life together and laughed a lot. (Black) humour has always been a source of strength for me.

When the disease was discovered, I had just been working with great enthusiasm for eight months in my new job as a spiritual counsellor in elderly care. And then, in one fell swoop, I was out of circulation, even though I was just as good at it. I found it difficult to let go of my work. In consultation with the company specialist doctor, my manager and my direct colleague, I decided to remain involved in the work in the background and on a therapeutic basis for as long as possible. That did me a lot of good. As a result, I was patient and could contribute somewhat to the work so close to my heart. It also made it easier to reintegrate into my work in the summer of 2022.

Changed forever

I am still working on that, almost a year later. The recovery process is tougher than I thought. I suffer a lot from fatigue, which means I constantly have to make choices about what I do or don’t do. I want much more than I can do, which is difficult and sometimes very frustrating. In addition, I have a major CA125 hormonal imbalance, which requires some adjustment. It also takes time and space to give a place to all the emotions of the past year and a half. For this, I sought help from a psychologist/spiritual counsellor. That helps not to ignore everything that has happened.

I notice that my life has changed forever. Being so suddenly confronted with a life-threatening illness has given me pause. I’m very grateful that I’m still here. And I notice that my priorities are changing. The coming years will remain exciting because the chance of return is real. The quarterly checks are there for a reason. My disease future is uncertain, which can sometimes affect me. The seed of fear is in me and will remain that way for a while. But by sharing those feelings and thoughts when they surface, I don’t have to carry the burden alone, and life becomes lighter.

During a bike ride, I came across a tree. Grown crooked and damaged by harsh conditions. Nevertheless full of life. I feel like this tree: somewhat battered but still full of possibilities to blossom, bear fruit and be meaningful.’