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...

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...

A question that I am asked regularly and of which I do not know how to answer. As for the cancer, things are going well. The tumor is completely removed during the surgery and everything looked good at the scan in November. And yet there is the but…. Because I still feel far from good. After the last radiation treatment, the side effects have become even worse. Even with paracetamol, swallowing is painful. I'm on morphine-like painkillers. Initially a short-acting one that I can take an hour before a meal, but this does not work. Then switch to patches that work for a long time. It takes a while for them to start working, but it helps. Fortunately, after a week it is going a bit better and I can get off with paracetamol alone. About 7 weeks after the last radiation session I can eat almost everything again, but it remains sensitive. Even now, 20 weeks after the last radiation treatment, there is still a spot in my esophagus that is sensitive when swallowing. Especially with larger ...

33 radiation treatments, 33 times traveling to Delft, but it's done. Well the radiations, the side effects will increase in the coming week or two. But then finally healing time. The past weeks have passed quickly. 33 working days, almost 7 weeks seemed like a long time when I started the radiation treatments. It were busy weeks and sometimes crazy weeks even. For example the week of July 13, Monday morning, making my breakfast when W. comes to me. Mom, she says, today is a bad day. I couldn't figure out why, it was July 13th but not Friday. Soon she said, well today is the 13th time radiation. And also July 13, I said. With that in mind I drive to Delft. When I am on the table ready for the radiation, they come back to me. We have an interruption, we are going to reset the machine, just wait for two minutes. They leave the room to continue, but I soon notice that there is no movement in the machine. And indeed a short while later they come back in to detach the mask. This is a...

Radiation, I had no idea in how that would be. What is it like to be fixed with a mask on a table for twenty minutes not be able to move, what do you notice about the radiation and what side effects do you experience? Of course you get information in advance, but that is not the same as going through it yourself, everyone experiences it in their own way. After nine sessions I know the answer to some of the questions. Spending twenty minutes with a mask on a table is not pleasant, but it doesn't make me feel claustrophobic. The mask is very tight so it leaves an imprint on my forehead. After the first session I indicated that it was painful, they now put a piece of cling film on my forehead before they put the mask on. This makes it less painful and the print fades faster. And then the side effects. They had indicated that it would take two to three weeks when you to experience side effects. After three sessions I notice that my skin is red, I still think that is the heat. But after...