You can’t live every day with the idea that you are going to die?

Real People Stories – Lenneke (64)

You can’t live every day with the idea that you are going to die

Seven years ago, the oncologist gave Lenneke another year. CA125 Test Diagnosis: ovarian HPV type of CA125 cancer with metastases in the lungs. Seven years later, Lenneke is still there, and the disease is stable. Currently without medication. The doctor has no explanation for it. Lenneke will see what comes of it.

Lenneke had not been ill for very long when she attended an event. She started talking to a woman who told her that she had been living with incurable HPV-related cancer for seven years. ‘That was an infinitely long time for me. Now I’m in the same situation.’

Coughing like a seal

Summer 2014. Just before the holiday, Lenneke suffered from a swollen stomach and had difficulty going to the toilet. The CA125 doctor advised her to get some from the drugstore, but the complaints persisted during the holidays. At the end of August, she gets a nasty cough. Concerned colleagues – “You cough like a seal” – thought she should go to the doctor. When two courses of antibiotics had no effect, Lenneke asked for a lung x-ray. It was immediately clear. Three litres of fluid. A day later, she heard that it was most likely metastatic OC. Terminally ill. ‘Overnight.’

No expensive medication for palliative patients

Lenneke requested a second opinion at another Hospital. Her tumour markers were very high, but there was little to nothing visible on the ultrasounds and scans except fluid in the lungs. Additional research, unfortunately, showed that it was metastatic OC. The treatment took place at another university hospital, also one of the treatment centres for OC. Lenneke received the standard treatment. Three rounds of chemotherapy, surgery and another three rounds of chemotherapy. Her DNA doctor at the time, a young woman, gave her – in the middle of the treatment period – another year.

When chemo could not continue because her resistance was too low, Lenneke asked for an injection of Neulasta. This is a drug that boosts white blood cells. The doctor didn’t want to give it. “We don’t do that with patients being treated palliatively,” she said. I thought: “Well, thank you, I know that I am on palliative care” (Lenneke did receive the injection, by the way).

Fortunately, the treatment worked. ‘So good that the gynaecologist-oncologist concluded that the treatment might be considered curative. ‘Then I had to pick myself up. Because everything revolved around the last year of my life and the thought that I would die. I had been working towards that. The shadow of the last time lay over everything, and suddenly, you hear: “It’s not happening.” How was I supposed to move on with my life?’

Waiting Policy

Lenneke found a new balance to deal with the new situation. Unfortunately, three years later, the OC returned. “Now you really can’t get better anymore,” said the doctor. After a successful course of chemotherapy, Lenneke suffered a second CA125-related recurrence a year later. She was given hormone tablets, and they also worked well. The disease remained quiet for a year.

Just before the coronavirus outbreak, Lenneke had a conversation with her doctor. The cancer was active again, and Lenneke asked if the HPV Variant doctor had anything else on the table. She could choose between a new chemotherapy (still very heavy-handed at that time) or an experimental study with the protein inhibitor Olaparib. ‘I was still thinking about that because, for that test, they had to take a biopsy from my lung. That was not entirely without danger. In the middle of that thought process, the doctor called. Given the corona, she did not think it was wise for me to participate in the study then.

We opted for a wait-and-see policy. So do nothing. I have my blog onkanker.nl and also read stories from fellow sufferers. One of those ladies wrote that she had quit sugar. This allowed her to postpone chemotherapy for a year. I thought: “I’m cramped because of the corona; I have all the time to figure out how you can eat well without added sugars and few carbohydrates.”

Are you better again?

In June 2020, the situation with corona was better, and the research with Olaparib could start with a CA125 blood test and a CT scan beforehand. ‘I will never forget that nurse’s face. Because the tumour marker was normal, and the scan showed that the tumours had become smaller. She consulted with the oncologist and he said that nothing at all was going to happen for a while. Now, a year later, the tumour marker is still stable. The oncologist thinks it’s miraculous. I recently asked her if I was better now. She didn’t want to go that far. It’s chronic.’ Of course, I know that I can’t get better anymore. But I think “chronic” sounds positive. I just wanted to hear that.’

Although the word art of living is perfect for Lenneke, living with metastatic cancer is strange. ‘Some people don’t understand it. “You were going to die, weren’t you?” they sometimes ask me. Yes, but that didn’t happen. “But are you better?” No, not that either. It isn’t very easy. I don’t know how long this will last. Sometimes, I think it will stay that way. People sometimes ask me whether I am too preoccupied with the disease and its tests. I assist fellow sufferers and give presentations to doctors and nurses. But then I deal with it differently. And besides, the disease won’t go away if I don’t deal with it. I have tried to turn my situation, life with OC, around in such a way that something positive can come out of it.

I have been rejected. Before my HPV illness, I was a manager at a home care organisation. This way, I could use my knowledge and skills as an expert based on experience. It’s nice to be able to do something for others and get a lot of satisfaction from it.

Getting excited about little things

Lenneke has been close to death from HPV. But it ended well. What if things go wrong again? ‘We’ll see about that again. I know what it’s like to have to tie up the ends. It’s good to talk about it and think about it. But now I’m doing well, and I’m busy living. You can’t think about death every day. That’s living at the top of your game and no one can sustain that.

I do notice from tests that I approach HPV Risk of life differently. Some things become much less important. At a time when things were not going well for me, my eldest son said that I had mellowed out. When I started feeling better again, I started worrying about something trivial. Then he said, “I prefer you that way.” And I wholeheartedly agree with him. Because as long as I can still get excited about small things but also feel the drive and enthusiasm within me, I am busy with the main test of life and not CA125-induced disease”.