Just keep breathing

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...

What a long wait it is. After the interview at Holland PTC 10 days have passed and I still have not heard when I can start with the radiation. Although I am not really looking forward to it, I want nothing more than to start, the sooner it will be over. When my phone rings and I see it is Holland PTC I jump up, YES finally. Unfortunately, the happiness was short, she called to say that the calculation takes a lot of time and I will not start next week. We agree to have contact next friday and if it is possible to start sooner, she will give me a call. I am very disappointed. Waiting even longer means radiation during the summer holidays of W. and T. and above all still not being able to build up what will be broken down by the radiation. Off days are allowed to, tomorrow I’ll make a fresh start. On Tuesday June 23, exactly 12 weeks after the operation, the nurse from Holland PTC calls again this time with the announcement that she has a start date. The radiation will start on Thursday ...

"The bravest are surely those who have the clearest vision of what is before them, glory and danger alike, and yet notwithstanding, go out to meet it." - Thucydides Over two weeks after the conversation with the radiation doctor at the LUMC, I finally receive a call that the calculation of the proton radiation has been received. And it turns out that there is a considerable advantage in proton radiation for me. At first I am not sure whether I am really happy with this. Of course, the chance of side effects is smaller, but it also says something about the sensitivity of the area to be radiated. On Tuesday 9 June I have an appointment at Holland PTC, the proton center in Delft. Initially we have a conversation with a nurse. She poses a number of general questions and we discuss participation in scientific research. Proton therapy in the Netherlands is still in a research phase. The benefits have already been demonstrated abroad, but they also want to do research in the Nether...

Soon after hearing that I have cancer I decided for myself: if I start losing my hair because of the treatment, I will donate it. Fortunately for me early in the process it becomes clear that I will not lose my hair and the thoughts of donating my hair disappear a bit into the background. When my dear friend tells me that she has been told that, after 1.5 years of positive news, the metastases have grown and she will undergo chemotherapy again, it will start to gnaw again. If a few days later when making the mask for the radiation my hair gets in the way, I know for sure: it will go off! I am very happy that I will not lose my hair but I am very proud that I can make another person happy with my long braid.

It is now 6 weeks after the surgery. The past few weeks have been dominated by recovery. I have had telephone contact with the pulmonologist several times. In one of those conversations, he said that the pathologist has determined that the tumor has been removed completely. The margins of clean tissue are minimal, max. 2 mm, which is why they want to give me radiation as a precaution. Before the radiation process can start, it must first be checked whether the seam in my trachea has healed properly. Monday May 11 Today the pulmonologist will look into my trachea trough a bronchoscopy. Because it was not nice for me last time, this time I will get a sedation. The thing they can't do while I'm asleep is to give the anesthetic, that "fine" banana flavor again. When I wake up, I hear that everything went well and that the seam looks neat. So, a green light for the radiation process.