This is how my eye looks 4 weeks after the proton radiation therapy.
The lower eyelid is very sore. I am using a cream to ease the pain and discomfort of the “sunburn effect” from the ratiation. This is an after effect that I was warned would happen. It feels just like a severe sunburn. The skin has already stared blistering, which makes it hard to concentrate, sleep, many things of a normal life you’d do but can’t if you’re badly sunburned. But it’ll get better.
It’s 3 weeks and a couple of days since my last proton radiation treatment.
At first, except for the tiredness, I felt great. It was good to be back home, start the regular routine again.
Now, the “sunburn effect” has started on my left lower eyelid. Have you ever had a sunburn so bad that your skin felt so dry as to seem like it was cracking open? This is what I now feel.
It started 2 weeks to the day of the last radiation treatment. The “sunburn effect” grew quickly. Not so bothersome at first but after a few days, then a week… WOW. The pain from how the eyelid skin feels it won’t let me sleep.
I take an Avdil every few hours to help to keep the swelling down. I ice my eye when the pain gets real bad. And I have a moisturizing cream that the pharmacist suggested, it’s fragrance free, non-oily too, which makes a big difference in how the eyelid reacts to the moisturizer. I was using a scented cream but it really stung. As well, I still have eyedrops to take 3 times a day to help the eye heal. Scented cream at the rim of the eyelid, mixed with eye drops, is a type of sting that no one should have to endure.
If I could only sleep at night… ahh….
You can see how the areas of my visible right eye (during treatment, because of the loss of central vision in my left eye, the ‘tracking monitor’ was watching my right eye instead of my left eye that has the tumor) are marked on the monitor.
Should I lose the flashing light that I must train my eye at to be certain the proton beam is directed correctly, the doctors will immediately put a stop to the beam so as to not cause additional damage to my eye. It’s only the tumor we want, not the whole eye.
A patient not being able to maintain his aimed eye line during the treatment increases his chances of losing the eye. Fully 1/3 of proton radiation treatment patients have to have the treated eye removed. This is usually due to the tumor killing the eye before the radiation kills the tumor, I believe. Hey, staring at a flashing light at the edge of your vision for 90 seconds seems easy at first…. but it isn’t.
The proton radiation treatments are monitored from a short distance. No one wants to be in the same room as the patient (for safety and health reasons) during the actual radiation treatment.
The patient (me) is watched for panic in the left monitor (as well I have a panic button in my hand once I am positioned into place and the mask is set) and in the right monitor my right pupil is seen enlarged. Should my vision move outside of the allowed areas, as seen from the marks on the pupil monitor, the treatment will be immediately stopped so as not to send the proton beams to an area that is not the tumor.
Rob getting setup as seen in one of the monitors that are used to watch the proton radiation procedure by the doctors, assistants, physicists and visitors to the TRIUMF center.
It’s much harder than it looks…. Christine (from the BC Cancer Agency) Has to make sure that I’m correctly positioned while in the chair. Measurements are to the 1/1000 of a milimeter, that’s how exact the proton radiation is directed at the tumor behind my left eye.
Once the mask is made they have to put it to use. They use it by fitting it on your face having you clamp down on a molded bite plate and there you are, anchored in place. The chair is a technological marvel, as detailed elsewhere.
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