This post is so important to me because I remember how scared I was for my radiation preparation appointment and if I can assuage that fear for even one person then I'll know I've made a difference.
Before you begin actual radiation, you’ll have a treatment planning and simulation procedure. This is done to make sure that:
Your treatment site is mapped.
You get the right dose of radiation.
The amount of radiation that gets to your nearby tissues is as small as possible.
In preparation for this appointment, I had a zoom appointment with a young resident doctor who walked me through what to expect during my radiation simulation. What he said sounded something like this:
On your first day, a group of radiation techs will bring you into a room with a big machine and they will fit you for your mask and make sure the radiation is hitting where it should. You will lie down on a hard narrow surface kind of like an MRI platform, and they will try to make you comfortable. The techs will then stretch a hot, wet, mesh-like material over your head, face and throat and secure the mesh with clips onto the table. You will lie still while the mesh cools and hardens. You will not be able to move at all and you might be uncomfortable or feel like you’re suffocating. You’ll be able to breathe through it but not very well, and many people don’t like it. Once the mesh dries and hardens, they will perform a planning CT scan with the mask on, to ensure that your head remains still and in the proper treatment position. You won’t be able to move your head at all because your head will be strapped down onto the CT platform. You might feel nauseous or claustrophobic but we can prescribe medication to help with that.
WOW! Where do I sign up?? Ha!
I joke now, but after that appointment I slammed the computer closed and cried my eyes out while my husband made some calls and made sure I never had to see that doctor again. In the resident's defense, dealing with cancer patients is hard. Throughout the past two years I've met with a whole bunch of doctors and I've learned that while a great bedside manner is often a gift, it's a gift that can be learned - from the right doctors and from experience.
I can appreciate the dilemma - the resident wants to be as accurate, thorough, and honest about the upcoming procedure as possible. But... he or she also needs to remember that they are talking to someone who is going through an unthinkable trauma and there is a need for delicacy. I personally think hospitals should put residents through a mock radiation simulation procedure so they can lay on the platform, get fitted for the mask, and then when it's time to explain the process to patients, they can speak from a place of experience and genuine empathy. But that's neither here nor there because I don't foresee that actually happening. All I can do is explain my own experience and hope that it helps someone.
So here goes:
I was alone (COVID) and so scared. It’s hard to really put into words just how scared I was. I was sitting in the waiting room, stiff as a statute, replaying everything the resident had said. Finally, someone swung open the door and called my name. I pushed back tears and put one foot in front of the other, still uncertain exactly what I was walking into. I walked through the doorway and three of nicest techs in the world introduced themselves and escorted me to a room. They explained to me what everything in the room was for, asked me if there was anything I wanted to know, and when I felt comfortable, they told me to lay on the table that was attached to what looked like an MRI machine.
They brought me cushions, wedges and toasty warm blankets, and kept propping my legs and feet up until I promised them that I couldn’t possibly be more comfortable. Then they took pictures of me so they could recreate that position for me each time I came in for treatment. Next, they brought in a wet, and blissfully warm mesh material and gently laid it over my face. Honestly, it felt like I was getting a facial. I felt calm and at peace. I don't know if my sudden calmness was because of how wonderful the techs were, or because the mask fitting wasn't nearly the torture chamber the young doctor had prepared me for, but I was pleasantly surprised to find out it wasn’t bad at all. It was the first time I felt relaxed since the diagnosis.
Next, once the mask hardened, they moved me inside the big machine and took some pictures to make sure the beams entered the right spot. Finally, they asked me what music I preferred to listen to during my treatments, added my selection to their notes, and that was it. After I finished the planning and simulation procedure I met with my Radiology Oncologist and he reviewed the radiation plan with me (see image below).
I went home untraumatized, emotionally intact, and a little less scared about my next appointment.
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