33 sessions done!
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 bigger breakdown so I just have to go back to the waiting room. After a short wait I’m asked to go to the other radiation room and everything is going well there. I can laugh about it, after all, W. had already predicted it. The day after, the same machine and again a malfunction when I lie on the table. Fortunately, it doesn't go on like this all week 😉
During the interruption on Monday, they had some time to take a few photos and make a video while I was in the device. When I later watch the video and the photos I realize that it is quite an impressive device that I lie in every day.
Two weeks later there is a bigger breakdown. I receive a phone call from Holland PTC asking to wait at home until more is known whether the malfunction can be resolved quickly. Fortunately, it only takes a few hours and I can still go to Delft at the end of the morning.
Fortunately, the side effects remain mild for a long time. The build-up is very slow and I am very happy with that. After all, the outlook was not too positive, especially when I started to suffer from red skin after a few days.
When my skin started to get red I got Cetomacrogol from the care coach. This helps with dry, irritated skin, keeps the skin soft and protects it. I also get a sample pack with a somewhat more expensive ointment (you have to buy it yourself). When I see that it contains Shea Butter, among other things, I realize that I also use it for B. The effect of Shea Butter is quite similar to that of the Cetomacrogol and I decide to switch to Shea Butter. I am very satisfied with how it works. My skin is getting more and more red, but it is not a wound yet.
I have to protect my skin well against the sun, I do get the tip for a Buff (neck scarf) but that does not work for me because the affected skin is a bit lower. I find a UV scarf, lovely cool fabric, I choose a white one so that it doesn't get to warm. Very nice to use because applying sunblock every time does not seem good for the skin.
And then my esophagus, when I am over half of the radiation treatments I start to have problems with my esophagus every now and then. Larger pieces of food in particular are not pleasant to swallow. At first I still manage to keep eating by cutting it into smaller pieces, but eventually I have to leave certain things. Breakfast goes well for a long time, my esophagus will have rest all night. Lunch is the first to transition to liquid (protein-rich smoothies) and then to dinner (usually soup). My breakfast has also been painful in recent days.
For the pain in my skin and in my esophagus I have been taking paracetamol for several weeks. 1000 mg every 6 hours and if I forget once I immediately feel why I take it because even swallowing saliva is painful.
When I walk into Holland PTC on the last day, the receptionist does a little dance. Knowing that I am coming for the final radiation treatment. I drove to Delft with a happy feeling. So relieved that this would be the last radiation treatment. And it is so nice that people sympathize with you.
It was not my last visit to Holland PTC, at least some check-ups with the doctor and the collection of my mask.
When I get home my whole family is waiting for me. We are all happy that this part of the battle is done.
My doctors are saying proton treatment not necessary for me, photon will work fine. (Trachea ACC tumor). Did your dr. Suggest you should try photon radiation? How was proton selected? I am interested in proton but don’t know how to convince them.
ReplyDeleteIn my post about radiation I wrote this:
Delete"The usual technique of radiation is via photons. It is also possible to radiate with protons in the Netherlands for a year and a half. This technique is much more accurate. To qualify for this there must be a substantial, demonstrable benefit. Due to the vulnerability of the area to be radiated, a calculation will also be made for the proton radiation. The two calculations will be compared and I will be eligible for this with a demonstrable advantage."
In The Netherlands it is not possible to choose between photon and proton therapy. They compare the calculations and if they see there's a substantial, demonstrable benefit in proton therapy will qualify for proton. At that moment you can always choose to have photon therapy but I really don't know why anyone would choose that when you know that the chance for side effects is smaller with proton therapy.
I hope this answers your question.
Debbie, how are you feeling by now? How is swallowing? Vocal cords? Hope you had fun on your trip! I’m going to get proton radiation in Chicago next month! Glad I found someone willing to treat me with proton.
ReplyDelete