Just keep breathing

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.

Today (May 19) I have an appointment with the radiation doctor at the LUMC. I am afraid. Not so much against the conversation but what awaits me during radiation therapy. The pulmonologist has indicated that it will be about 15 to 20 radiation sessions  and that I will get pain with swallowing because my esophagus will also be irradiated. Not really something I'm looking forward to. During the conversation with the radiation doctor, he explains the entire process. They removed the tumor by a minimum margin of up to 2 mm of clean tissue all around. Preferably they have 10 mm of clean tissue, but that was not possible given the location. Because the margin is so small, they want to give radiation therapy as a precaution. During radiation, all tissue is damaged, good and bad cells. A good cell takes about 6 hours to recover, a bad cell much longer. By every day radiation, the bad cells have no time to recover and will eventually die. The number of radiations is estimated to be somewha...

The morning of the surgery they wake me up around half past six. I go to the OR at 7 AM and I don't have to do a lot. I want to see if I can pump some milk for B. because it will probably not be easy to do right after the surgery. I am quite proud when I pumped 300 ml of milk in a fairly short time and after 1.5 years of breastfeeding. B. can at least still drink my milk today and then we will see how it goes in the coming days. Just change clothes and just before I am taken to the operating room I get tablet with sleeping medication to start the surgery a bit more relaxed. I am the first patient at the preparation room. The medication does its job quickly and the next thing I know is that I am in the IC. Later I hear that I have been awake for about 20 minutes in the OR before the surgery. I don't know anything about that anymore, that is a scary idea. At the IC it’s quick obvious that a lot has been changed in the hospital because of COVID-19. Anesthesia employees who work in...

On March 26 I finally receive the redeeming call, I will be operated on Tuesday March 31. I have to be in the LUMC in the Thoracic Surgery Department on Monday, March 30 at 10:00 AM. This gives us all kinds of practical challenges. Because of the Corona measures, I am allowed a maximum of 2 unique visitors per day. This means that I cannot have my whole family visiting. B. is breastfed and if I succeed I want to continue so I would like him to visit me every day. If we receive the offer that the eldest two can staying out, we are happy to accept that offer. Of course, that is not an ideal situation either, but then they have at least the peace and regularity and they can go on home schooling. Because whether they are at home or elsewhere the lessons are online anyway. March 30 At 10 AM we arrive at the hospital. Due to the Corona measures, we have not yet spoken to the chest surgeon and I have no idea what to expect. M. and B. will stay in the hospital until we spoke to the surgeon. Fo...

Since Saturday I have an irritating tickle in my trachea. Last week I coughed up a piece of tissue, the pulmonologist told me that this could happen. He has burned off pieces of the tumor, but it may be that there are still a few pieces of tissue that are half loose. This feels like a piece of tissue that flaps because air comes in during breathing. Because I can’t reach the lung clinic by phone, I decide to stop by this afternoon (March 16) before I have the PET scan. They contact the pulmonologist and he tells the coughing is nothing to worry about. When I am in the nuclear department for the PET scan, the pulmonologist calls me asking if I can come by after the scan. I'm taken to a room in the nuclear department. There I can sit on a bed and they will put an IV. The sugary, radioactive liquid is injected through the IV and I have to keep still for half an hour. Lying on the bed and not moving. The sugar goes to the energy-demanding parts in your body. When you use your muscles, ...

“Word wakker want dit is jouw droom, je geeft hoop aan de mensen, hoop want daar draait het om” * *Wake up this is your dream, you give hope to the people, hope because that's what it's all about  I wake up with this text in my head, some lyrics from a Dutch song: “Hoogste versnelling” by Nielson. Why is this in my head, so special. Keeping hope, giving hope, being strong, fighting. And that dream, unfortunately a bad dream, but my bad dream. And I seem to have woken up. One night and that makes all the difference. The power, the willpower, want to fight, have to fight, got to fight! I will not let it crush me. While having breakfast I receive a call from the LUMC. It’s the nuclear department with a time and date for the PET scan. Monday afternoon, I am so glad because the earlier the scan the sooner clarity and the sooner the treatment can start. When I go shopping that afternoon I notice that not only my world is turned upside down. Half the supermarket is empty, people have ...

Today (March 12) I have another appointment with the pulmonologist. On Wednesday they always have wide consultations with all doctors and I expect that they have discussed my case there. And of course I hope the pathologist gave the biopsy results. The hospital visit starts with a new lung function test. The pulmonologist would like to know whether the procedure has been successful. Immediately after the surgery I noticed that I could breathe a lot better, by that I realized how bad my breathing was. After the round of Corona questions, you have a cold, you have a fever, you cough (yes, but that's because of irritation in my trachea because of the surgery), we can start. The nurse informs me I have to tell if it’s not feeling okay because there is no need to provoke the trachea. The blowing is fine and I immediately see that the curve is looking fine. The nurse responds to this by indicating that she is not allowed say anything about it, but I notice that she agrees with me. Due to...

Fortunately, I can already go to LUMC three days after the bad news. I first have a conversation with the pulmonologist and then he wants to take a look at my trachea trough a bronchoscopy. During the conversation, the pulmonologist tells us that the tumor must be removed regardless  whether it is good or malignant. They can do that by removing a part of my trachea. As he tells it, it really sounds like "we'll just do that" and I don't realize that this may not be a simple surgery. After the conversation we walk together to the room where he will do the bronchoscopy. The procedure will be done under local anesthetic. They start anesthetize my throat, who has had the nonsensical idea to make the anesthetic more nasty with banana flavor? Every time they anesthetize a little deeper. Inserting the bronchoscope is no fun, especially the part past my vocal cords is very bad. If I want I can watch the screen what the doctor is doing, but I am mainly busy with breathing calml...

For over a year I have been suffering from vague tightness. It is difficult to say when it does and doesn’t bother me, what type of tightness it is and whether there is a certain trigger. Because it has been getting worse in recent months, I make an appointment with the general practitioner. The GP does not hear anything strange about my lungs, but she wants me to have a lung function test to see if it may be asthma. If that does not work out, then I have to see a pulmonologist because breathlessness is not okay. A few days later, the practice nurse takes the lung function test, spirometry. The curve I blow is abnormal, a strange flattening instead of a nice peak. Because she has never seen this before, she wants to advise the GP to refer me to a pulmonologist. Because I would like to know what the abnormal curve could mean, I am looking for information about spirometry curves. Soon I found that this curve fits an airway obstruction. I also find information about tumors, but I ignore t...