Just keep breathing

It's been two months since my gastroscopy. Two months in which I'm starting to get more and more clear why I don't like eating anymore. After consultation, the radiation doctor and the pulmonologist have decided that it is wise to have the ENT doctor take a look. That appointment is still pending. More and more I'm not looking forward to eating anymore. So much that it gives me panic attacks. I decide to contact the ENT department to discuss what is possible, maybe I can already get in touch with a dietician or psychologist. I'm afraid the fear of food is getting bigger and bigger. When I contact them, it turns out that a spot has become available for the following week. That means my appointment is almost a month earlier. The appointment is with an ENT specialist and someone from speech therapy. These two work closely together in the field of swallowing problems. I am very nervous. What will they find, can they do something about it, what are the consequences. The ...

Two weeks ago I had the gastroscopy. The morning was messy so I didn't have much time to worry about it. And when the hospital called to ask if I could come earlier, everything went very quick. Once in the hospital, i went straight to the endoscopy department. I was immediately admitted there. List of questions was completed, checks were made and an IV was placed. Then I had to wait a while until it was my turn. Once in the treatment room, the nerves kicked in tremendously. Flashbacks to the first endoscopy I had at the LUMC. The bronchoscopy in which the lung specialist has taken a biopsy from the tumor. Luckily I get a sedation this time. All I get is the numbing spray in the back of my throat. A spray that they made “tasty” by giving it a banana flavour. Who made that up?!? I wake up in the recovery room. At first I am still very drowsy, but I soon see that the letter with the provisional results is already ready. When I read that I am a bit disappointed: they have not found a c...

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...