Why a book?
“When I was diagnosed with lymph node cancer in May 2016, I decided to keep a diary to record that period for us as a family. I never had the intention of publishing it as a book, until several people, including doctors , suggested sharing my story more widely. At first I didn’t see it at all. It’s such a personal story, it feels vulnerable. And besides that I thought: there are already so many people who share their story. I have made the decision and hope that our experiences – and there are many – can be useful in any way for others, not only for people with cancer, but also for people who are confronted with it in their environment or work. “
How has keeping the diary helped you during the illness process?
“Writing helped me a lot to put my own emotions and thoughts into words and to give them a place, although it was sometimes very confronting to put them on paper in black and white. Yet it helped and often brought more peace to my head. “
How did you find out you had cancer while pregnant? What did that do to you and what did that mean for the pregnancy?
“I struggled through the pregnancy. For example, I was extremely tired, sweated a lot at night – the hormones, I thought – and I started having a pregnancy complication.”
I felt a lump on my chest
“Around the 32nd week of my pregnancy I discovered a lump on my chest. My doctor thought it was harmless. That triggered something in me, especially since my father died of lymph node cancer in 2012. I consulted my gynecologist and he wanted that. an ultrasound was made. Then it went quickly. During the ultrasound they saw enlarged lymph nodes, soon afterwards a biopsy was taken surgically and I had a few more tests. I was diagnosed with Hodgkin lymphoma when I was exactly 34 weeks pregnant. Dan the world stands still for a moment. “
“I remember when my first questions to the haematologist were: is there a risk that my baby will have it too, what does this mean for the delivery and how soon can we start treating? Because I thought: treating quickly also means getting better and better quickly. I could take the best possible care of my future child. Of course I felt fear and all kinds of other emotions, but in those first days I mainly got through on adrenaline. And actually we didn’t have time to let it land at all. “
“Because initially the doctors proposed to initiate labor in week 36, so that I could not start chemotherapy long afterwards, but a day after the diagnosis we had to switch again. My pregnancy complication worsened and therefore the delivery still had to go. faster to limit risks for my son. Fynn was finally born when he was 35 weeks and 2 days, premature but perfectly healthy. “
How did you experience your postpartum period?
“Very double, and of course very different from what I had imagined. Fynn had to stay in medium care for the first two weeks after birth and my friend Jeroen and I also stayed in the hospital for ten days. We had a room together and That was very nice. The nurses helped us a lot to create some peace and to focus as much as possible on Fynn. That worked best when I was with Fynn, and that almost all day. Then I felt very happy. But those moments of happiness were also interspersed with fear, uncertainty, sadness and frustration, so a roller coaster, Jeroen and I certainly chose to see few people for the first two weeks, we really wanted to focus on each other and Fynn, and not talk about cancer every time. “
I am no longer the fit woman before pregnancy
How are you now, what are the prospects?
“I am no longer the fit woman I was before the pregnancy. In the end I had many side effects and complications during all treatments and the disease has also returned twice. At the moment I have been temporarily clean again for a year, although unfortunately there will be new studies and uncertainty. Yet the prospects are not bad. And there are also new, better treatment methods, which are less stressful than chemotherapy, for example. So despite the fact that cancer unfortunately is much more part of our daily life, I have very confident in the future. “
What does your son Fynn get from this?
“He is now almost five years old, so an active curious toddler. For him we want to let everything go on as normally as possible. That is not only good for him, but also for us. Most of the treatments, during his first year of life. fortunately, he did not consciously receive it. Now he occasionally asks questions when I go to the hospital for check-ups, for example. We keep it very small for him and explain things briefly and simply. For example, that I go through the ‘magic tunnel’ (scan ) go so that the doctors can see if the medicines are still working properly. He finds that interesting and after that he mainly returns to the order of the day: playing! “
How do you feel about life now, is your attitude different from before your illness?
“Being sick confronts you with your mortality and deepest fears, but you also get to know your own strength fully. I know that I can handle a lot, that I have a lot of resilience and that provides guidance. It has also made me extra aware to whom and who what I want to spend my energy – which is more limited – and I choose for that more easily. In other words, you realize better than anyone what makes you really happy. And perhaps very cliché: I can sincerely enjoy very small things, that is also Corona time very handy. Life is not as malleable as many people want, but even in difficult times there are many beautiful moments. “
Does corona affect your actions?
“We are absolutely extra careful, we look very critically at what is and is not sensible. The last thing I want to do is to be ‘tackled’ by the corona virus. Especially now that new studies are coming. When it comes down to it, we do. of course you also want the care you need to be available. “
Nobody knows when he will die
Are you afraid of death?
“I am not afraid of death. But of course I am sometimes afraid of having to say goodbye. Because that, especially with a small child, is the last thing I want. But I will not let those thoughts and emotions prevail. No one knows when he or she will die, and neither do I. The outlook is still positive and that’s what I’m focusing on. ”
What do you hope to mean to others by publishing the diary?
“First of all: I don’t have the wisdom and don’t know what helps someone else. I can only share our experiences and I do that honestly and frankly in my diary. I hope that my story gives recognition, support or strength, or that it helps people to step over their barriers, but it also makes people aware of how great the impact of a disease like cancer can be. You don’t always see that ‘from the outside’. In addition to my personal story, I have collected a number of concrete tips and insights that have helped me and my friend a lot. These are tips for patients, but also for their environment and caregivers. It would be great if readers would derive valuable insights for themselves from this. “
– .
