Just keep breathing

Every day I am confronted with the consequences of cancer. For everyone who thinks it's gone now, everything is back to normal: no unfortunately not. Maybe it's a new normal. One in which I am aware of my mortality. Where I know that nothing in life is self-evident. But also in which I notice the consequences of surgery and radiation every day. Sensitivity in my neck, a thyroid gland that is not working properly, not being able to make all movements with my head because of a physical limitation due to the surgery. A few weeks ago I noticed that I regularly have the feeling that my medication is getting stuck in my esophagus. From the moment I noticed that, I started paying attention and also thinking about whether I suffer from more often. That indeed turns out to be the case. For some time now I have had increasing problems with swallowing food. Especially harder or drier food. But I also notice more and more that there seems to be something in my esophagus. One of the possibl...

 It's been a while since I've written. In itself it is a good sign. The CT scans look good every time so far and my thyroid levels are good too. The physical fatigue is still there and in the last conversation with the pulmonologist he indicated that this occurs often and that some deal with this for the rest of their lives. For the first time since my diagnosis I managed to go on holiday to Scotland again. We have been looking forward to it and the weather was wonderful! One of the goals I had was standing on top of Arthur's Seat. I've written about it before. Shortly after I was diagnosed, a friend suggested that what was growing in me should be named Arthur. That helped me so much to put it into perspective and give it a place. Arthur's Seat was already a wish, but after that it had an even greater meaning. When I tested positive for Corona at the end of the first week of our holiday in Scotland, I was disappointed. Surely this wouldn't ruin my challenge? I...

Adenoid Cystic Carcinoma (ACC) is the name of the tumor discovered in my trachea in March 2020. It is a type of salivary gland cancer, one of more than 20 different types. This slow-growing tumor usually occurs in the salivary glands, but is sometimes found in other parts of the body such as the breast, uterus or trachea. ACC is known for spreading along the nerves through a kind of thin tentacles. This makes treatment difficult and the chance of recurrence is high, also (or perhaps especially) in the long term. In 2020, 115,047 people in the Netherlands were diagnosed with cancer. The most common cancers are breast cancer in women and prostate cancer in men. If I compare these figures and convert them to the percentage in relation to the total number of diagnoses, the enormous difference is clearly visible. Breast cancer: 15,077 = 13% Prostate cancer: 12,815 = 11% Salivary gland cancer: 179 = 0.16% About 10% to 15% of salivary gland cancers are ACC. That would be around 20 diagnoses f...

I've been living with cancer for 600 days. First with the knowledge that the tumor they discovered in my trachea was cancer. And since the treatment with the physical and mental consequences. Before I knew I had cancer I could hardly imagine what it must be like to have those toxic cells in you, but especially what it is like after treatment. Some say it's gone now so there's nothing to worry about. I can't forget. Every day I am confronted with the consequences of cancer (treatment). Coughing up mucus more often, back pain due to the anatomical change in my neck, pain when swallowing large or dry pieces of food and not being able to read long stories to my toddler because talking for long periods of time is exhausting. All small things, but because of that there is hardly a moment that you forget that the cancer has been there. I realize that it could have been much worse, but these are the things I deal with on a daily basis. And then there are the moments when you th...

Having a disease, or suffering from it, entails much more than the disease itself. You learn a lot about yourself, your body and mind, about the people around you and about the disease you are dealing with. The cancer, unfortunately, was not the first major illness I had to deal with. For three years I had a (severe) depression. A mental illness, something that cannot be seen on the outside and which unfortunately many people still don't understand. With any disease it is difficult to put yourself in the position of the “patient” if you have never had to deal with that disease yourself. And even if you are familiar with the disease, everyone is different and a disease can also progress differently. You can try to get a picture of what that is like for the other person by listening to his/her story, asking questions or looking for information. I am very open about my illness. It helps me to talk about it. It struck me, especially during my depression, that people can react very diff...

It has been a year ago, the operation or that we said goodbye to Arthur. Shortly after I was told it was a malignant tumor, a friend said to me let's name the creature that grows inside you: Arthur. That has helped me so much I was able to approach it a bit more lightly. Because part of the tumor was lasered away, it caused a lot of irritation in my trachea, which meant that I had to cough regularly or had a tickle in my trachea. Because this was all happening in the early days of the Corona outbreak, coughing was something I would rather not do because everyone looked at me immediately. At such a moment I could say to myself or one of the children: "Arthur is being annoying again" or "It's all Arthur's fault." We had to laugh about that instead of letting us feel uncomfortable. One of the first things I wanted to do after my recovery is to stand on top of Arthur's Seat. We have been to Edinburgh twice and both times I was unable to get up Arthur...

I have been dealing with everything that happened in the past year for a few weeks now. That is not always easy because how do you process something like that. And then suddenly something comes your way that helps enormously. In my case a movie: Kiss and cry. When I read the description I had to swallow, it is about a girl with a rare form of throat cancer. Before I dared to take a look, I first looked up some more information. It is based on a true story. Despite the intense subject, I still wanted to see it. The recognizability: the chest tightness, the tumor on the right side of the trachea, the doctor's approach to the bad news conversation (she asks him very positively if everything is okay). This recognizability is also very confronting. After all, I have also been through this. There are also many differences, she was only 17 years old when she got cancer, she had a temporary tracheastoma, the tumor was against her thyroid gland so that they could not operate immediately. Sh...