Posted 6/2/2018 3:35 AM (GMT 0)
Hello TempFlightRestriction,
You've shared a GREAT POST for anyone beginning radiation treatments!
We're in the same age range, and I was also diagnosed in my 40s, so we definitely have some common ground.
In the interest of helping others, I'll add a few things that I learned along the way that might help other fellows navigate through a series of radiation treatments.
Starting out, I honestly didn't have much background information on radiation treatments --- so this was uncharted territory for me, you might say!
You have REALLY kicked off a great thread with this new post, and for that, I THANK YOU !
It's the sharing of first-hand experiences that make this website so valuable, and every member here continues to contribute towards that common goal.
In my case, detailed scans at Mayo Clinic in Rochester, Minnesota, indicated a need for some prostate radiation.
I have already pursued a series of chemotherapy treatments. I am on continuous ADT shots, and have also taken ZYTIGA for the past three years.
My medical team and I began to notice that my PSA was trending upwards the past few months. My doctors felt a series of radiation treatments would help.
To mitigate side effects, my radiologist decided on a course of 44 weekday treatments, given in smaller daily doses, over the course of nine solid weeks.
At first, that sounded DAUNTING, I have to admit!
That's the first thing I learned, going into this --- each case is different, and so each radiologist puts together a detailed and individualized PLAN to suit each patient's need.
In my case, a course of 20 treatments was briefly considered. While that would have gone much quicker, my radiologist felt that breaking the total radiation doses down into 39 treatments would potentially help me avoid side effects.
Taking that idea one step further, my radiologist felt that splitting the radiation dosage down into 44 treatments plus one simulation treatment was the optimal plan.
He put a lot of thought and care into creating this plan for me.
Once you get started, and get a few treatments knocked out, the days and weeks go by more quickly than you first imagine.
After you have your first treatment, the rest of the treatments follow the same pattern each day. As the old adage states, "Every journey begins with the FIRST STEP."
Here's some things I learned that might help others ... from "one brother to another brother" ... here we go:
* I work full-time, and you have to be your own advocate when setting up radiation treatment appointments. If you are still working, consider asking for the very first appointment of the day or the very last appointment of the day.
* Be patient when making this request --- as others "graduate" from their series of treatments, you can then request the optimal time slots that begin to open up that work best for YOU.
* In my case, late in the afternoon, after my workday was over, worked best for my schedule.
* Within a couple of weeks, I worked my way into that optimal time slot as my "seniority" as a radiation patient accumulated. Within a few days, I learned how to juggle my work schedule with the daily treatment schedule. Patience is a virtue!
*I have heard of a few fellows who manage to schedule their radiation treatments during their lunch hour away from work.
* Thankfully, some treatment centers are now offering EXPANDED HOURS to better accommodate the schedules of their patients.
* You might also wish to visit privately with your boss, and work together to accommodate the daily treatment appointment into your work schedule.
* Work colleagues might need to know that you have a daily medical commitment. In my case, I needed to miss some team meetings at day's end, due to my treatment.
* I knew that I had nine solid weeks of radiation ahead of me, so I came up with a proactive solution to balance my work schedule with my daily medical appointment.
*Many fellows say, "But my work is really hectic right now! How can I make time for this right now?" I've had some of those same thoughts. But, here's something to remember ... and it bears repeating ... these treatments are temporary ... you'll find a way to make it work ... and most importantly, your health is the PRIORITY right now ...
* I think it's important to say that if you experience side effects or fatigue, don't be afraid to take a few days off from work, or even modify your work schedule, in whatever way works for you.
*Some fellows might be able to do some work projects from home --- take a three day weekend --- work some half days --- whatever YOU need to do to take care of yourself during treatments.
* So, my cards on the table ... this isn't the best time to remodel the house, landscape the entire backyard, or take on any extra work commitments. Conserve your energy for your series of treatments.
* After your treatments finish up, then you can tackle the world, once again. More than anything, you need to take care of yourself, each and every day, so that you can START STRONG and FINISH STRONG.
* I had friends and relatives who immediately volunteered to drive me to treatments each day, which was a generous offer. I was thankful for their moral support, but, in my case, I had no issues driving to the appointment each day, after work.
*When each treatment is over, many treatment centers offer water, coffee, iced tea, and even snacks, if you wish to take a short break before driving home. Many people that I met in the waiting room did bring along a friend or relative, for moral support.
* I did find that the appointment schedule ran pretty much like CLOCKWORK --- so I always did my best to arrive a few minutes in advance.
* If you are running late for your appointment, they will usually take the next patient who is waiting, and then simply work you right back into the schedule. if you arrive late.
* They take care of many radiation patients in a day, so they try to stick to a CLOCKWORK schedule.
* Radiation treatments are a marathon, not a sprint, I learned over time. In my case, thinking of 44 treatments the night before my first treatment seemed like it would be a relentless journey. Soon, I learned a valuable lesson that really helped me ... don't look at all the weeks or months of treatment in front of you. Instead, my friend, all you have to do is simply take things ONE DAY AT A TIME.
* The treatment days WILL add up into weeks, and the weeks WILL add up into months ... so just focus on the day in front of you. Before you know it, you WILL be getting closer to the finish line in this marathon. Rest up as needed ... take it easy and relax in the evenings and on weekends.
* So, what's some of my best advice, learned from first-hand experience? You can't expect to "burn the candle at both ends" morning, noon, night, and weekends and expect to FINISH STRONG --- you need to reserve your energy for the ESSENTIALS in your life, as the days and weeks of your treatments continue --- just some friendly advice, from "one brother to another brother" ... I just want to offer these words of advice to help the NEXT FELLOW down the road who is just starting radiation treatments.
* What else did I learn along the way? I also found that BRINGING A GYM BAG to work each day helped me a great deal. Once my work day was over, I could then change clothes to get ready for my treatments --- and there ARE changing rooms and often personal lockers at the treatment centers for your convenience.
* Here's an EASY strategy that I tried, to share with you ... on the weekend BEFORE my very first treatment, I actually went on a "test drive" from my workplace parking lot to the treatment center parking lot, so that I would know EXACTLY how much time to allow for DRIVE TIME after I left work, so that I could get to my treatment on time.
* The test drive on the weekend put my mind at ease, too, as far as memorizing the exact interstate exits to take, the best parking spots at the hospital, and so forth ... all things that made my daily trip to the treatment center AUTOMATIC.
* My treatment center had a RESERVED parking lot just steps away from the radiation department, reserved for the convenience of radiation patients.
* My radiation technicians gave me a VERY helpful and time-saving tip --- they told me that if I would simply change into track pants, underwear, socks, and a t-shirt --- then the daily treatment could begin for me IMMEDIATELY. The alternative to this was having to change into a hospital gown for radiation that they provided each day.
* Believe me when I say this ... I was MUCH more comfortable and at ease in my own track pants and t-shirt. Fellows, if you don't have any track pants or workout pants, it's easy to purchase a couple of pairs, and DEFINITELY worth the investment. Comfortable, casual, relaxing!
* As far as clothing for your treatment, it's important that you purchase track pants that DO NOT have a metal zipper or metal buttons.
* I had to remember to remove metal keys and coins from my pockets, right before the radiation procedure. You also remove your shoes when you lay down on the radiation machine, but you keep your socks on.
* For pelvic or prostate radiation, the technicians simply have to hike your track pants and underwear down just a bit, when lining you up on the radiation table. Your t-shirt remains on the entire time.
* When the treatment is finished, a few minutes later, the technicians help you off the radiation table --- and you can then put your shoes back on --- visit the restroom --- and be on your way --- you're DONE for the day!
* The technicians have to take great care and precision, in lining you up correctly each day on the radiation machine. You have to remain as still as you can, during radiation --- in my case, they had a support on the radiation machine for both of my feet, so my feet wouldn't be restless during the treatment.
* They also had me hold onto a large plastic "ring" with both hands, with my hands resting on top of my chest, so that my hands wouldn't be restless during the treatment. A pillow was underneath my head. Each day, they also offered me a warm blanket, but I didn't need that.
* The machine that they used for me was completely open, so there was no sense of claustrophobia at all.
* Hey ! Best part --- the treatments go QUICKLY !
* In my case, you could select music requests that will play during treatments. More and more treatment centers are offering music selections during treatments and scans, I have noticed, if you wish to have music playing.
* Hearing some of my favorite songs during treatments each day was relaxing and provided a nice distraction, as well.
* Once the technicians got me lined up each day on the radiation machine, I found that the actual treatment itself was relatively short --- in my case, I only heard about two songs each time, and then I was on my way home. It was easy to "lie still" while two of my favorite songs played each day. ("Alexa, play 1970s Rock mix!")
* For the fellows out there --- I think it's important to state that the radiation treatments are not invasive or painful in any way. We all walk into new treatments with some trepidation ... and some questions, worries, and anxieties --- so there's nothing invasive or painful to endure each day. Most fellows are surprised how quickly the daily treatments are, in fact!
* Before your course of treatments begin, you will sit down with your radiologist or a care nurse, and they will carefully outline the treatment protocol. They will answer all questions you may have.
* You will have a preliminary scan that will allow them to put minute marks on your skin, no bigger in size than a dot. These tiny dots allow the technicians to get you lined up properly each day on the radiation machine, so that the radiation can be precisely and strategically targeted.
* Before your actual treatments begin, you will then go through a simulation --- basically, a TEST RUN --- and this simulation will let you know the protocol that you will follow for each daily radiation treatment.
* This TEST RUN or simulation will also help put your mind at ease for your first treatment, my friend. After a couple of days of treatments, you will have the daily drill MASTERED ... and you'll be well on your way ...
* Your medical team will also share helpful strategies in terms of getting proper rest, getting adequate exercise, some eating tips, as well as other health and hygiene ideas that can help you avoid side effects.
* It's important to avoid foods that will cause digestive issues during radiation. It's important to use a gentle soap on the skin area that is being radiated. They can even suggest gentle skin lotions that you can proactively apply to the radiated skin area each evening. You don't want to use a rough washcloth or harsh soap in the shower that will irritate the area being radiated.
* If you experience any side effects, you should tell your medical team immediately.
* They are there to help you, and they have specific experience in helping patients mitigate side effects. Remember, too ... you will be seeing your medical team frequently, as your treatments continue ... so they are right there to help you if you have needs, questions, or side effects.
* Most radiologists will meet with you once a week, to go over questions you might have, and especially to ensure that you aren't experiencing any side effects.
* Seeing your radiologist and radiation technicians so frequently often leads to strong, trusted bonds, as the days go by.
* It's important to stay properly HYDRATED, and if you are having pelvic radiation for prostate concerns, the care team will suggest a specific water drinking regimen before you arrive for treatments each day. For pelvic radiation, your bladder has to be fairly full, as this helps protect things during the radiation process.
* In my case, I brought a measured WATER BOTTLE to work, each day. This REALLY helped me arrive for treatments properly hydrated.
* As soon as your treatment is over, then you can head straight to the restroom. Yep ... you might find yourself racing to the restroom the minute your treatment is finished up. Get out of the way, right?!!
* If you are a bit dehydrated, the initial scan will show this. The technicians will let you drink some extra water, and you wait 30 minutes or so in the waiting area, while the extra water fills your bladder. You can then get back on the radiation table, and the treatment will continue. This happened to me a time or two --- it was EASILY corrected with an extra glass of water. The technicians handle this ALL THE TIME, so don't let it cause you any stress whatsoever.
* If you are OVERLY hydrated, and your bladder is TOO full, the initial scan will indicate this, as well. In this case, the technicians will simply suggest you visit the restroom for a minute, take care of business, and then quickly return to the radiation table, and the treatment will proceed as usual. This happened to me a couple of times --- again, this isn't any cause for worry or stress, and your treatment will proceed like clockwork.
* Soon enough, you will innately "sense" when you are properly hydrated. It's a balancing act --- drinking a certain amount of water before your treatment, and learning when to visit the restroom. As soon as each day's treatment is over, the rest of the day is YOURS, my friend! Weekends are a welcome reprieve, of course!
* My technicians DID share a helpful tip that I wanted to share with others in this post. They told me to just remember to drink some water, in a healthy way, throughout the day --- and even on weekends --- and that doing that would help me stay properly hydrated for each treatment --- and help me with my specific water drinking regimen that was required each day before the radiation treatment. Again, the water drinking regimen is for pelvic and prostate radiation ...
* Radiation treatments are typically NOT given on weekends, unless there is an emergency situation. Weekends are important --- my technicians emphasized this --- these allow your body to recuperate for a couple of days.
* As the weeks go by, many fellows experience a cumulative effect, and they begin to experience more fatigue.
* The weekends help you REBOUND ... and let your body recover from each week's dose of radiation. Weekends ... REST, RECOVER, RECUPERATE, and REBOUND !
* Starting out, I worried about what might happen if I had to MISS a treatment day due to an unforeseen circumstance such as illness, a family emergency, a winter storm, and so forth. These things can happen, right? My radiologist assured me that if an appointment had to be missed, to simply call and notify the secretary, and that an extra day of treatment would simply be "tacked on" at the end, to make up for the missed appointment. No worries!
* In my case, there were still some winter storms in the forecast --- so knowing this alleviated any worries I had about missing an appointment. Luckily, I stayed on track, and never missed any of the 44 weekday appointments. It's good to know these things, though!
* It seems that the main radiation side effect that everyone experiences is FATIGUE. Fatigue seems to be the notorious side effect that everyone associates with radiation treatments.
* Fatigue can hit immediately --- or not for a few weeks --- and it can hit suddenly --- out of the blue. I call this the FATIGUE FACTOR ... and it can be characterized by a feeling of listlessness, drowsiness, sluggishness, or lethargy.
* Most fellows will experience fatigue, in varying degrees, during their course of treatments, and even after they are over. Best to be prepared, right?
* In my case, I had only mild fatigue the first five weeks. The last three weeks, I could DEFINITELY feel a greater sense of fatigue. I focused on getting enough sleep, each and every night, to mitigate the FATIGUE FACTOR.
Each case is different ... in my case, I could feel it most in the evenings, before bedtime. Sometimes, the sound of the morning alarm clock was not always a welcome sound, either! Weekends were great ... NO ALARM CLOCK!
* Best solution that worked for me? Without a doubt --- I simply set an earlier bedtime. As the weeks went by, I scaled back my bedtime a bit more, during the time that I was experiencing more fatigue.
* I'm a night owl by nature, but I soon learned that even going to bed thirty minutes or an hour earlier than usual can pay big dividends, in terms of restored energy, the following day.
* Anytime I felt increased fatigue in the evenings, I just adjusted my bedtime accordingly. I decided from the beginning that I wasn't going to "run myself ragged" ... and that guiding philosophy carried me through the nine weeks. Remember ... you not only want to START strong, you want to do all you can to FINISH strong, my friend!
* It's very important to keep this reasonable bedtime on WEEKENDS, too. Experience is the BEST teacher, right? One Friday night, I went to a college reunion and stayed WAY too late --- I definitely felt the FATIGUE FACTOR to a greater degree the rest of that weekend.
* LESSON LEARNED for this night owl ... a reasonable BEDTIME ... even on weekends. If I can do it ... anyone can do it ... and there were eventually times when I could truly feel myself hitting a "brick wall" in the evenings, in terms of lagging energy, and that's when you need to get to bed.
* Honestly, though, my fatigue was very MANAGEABLE. Just play it smart and know your limits ...
* It's essential, too, that you incorporate some daily walking or exercise into your day, while going through radiation treatments. You might feel more sluggish or lethargic, and there WILL be temptation to simply laze on your couch or to sit in your favorite recliner after a busy day and a radiation treatment.
* In order to mitigate the fatigue, though, a daily walk or other form of exercise is essential ... my radiologist and oncologist BOTH wholeheartedly recommended this strategy, to help mitigate fatigue. Take the dog for a walk ... or walk around the neighborhood for a bit ... putter in the yard or garden ... and try to do this CONSISTENTLY each day. This will help you FIGHT BACK against the fatigue factor, my friend!
* When I started radiation, there were snowy and rainy days to contend with, as winter was slowly winding down. I was committed to walking CONSISTENTLY during the nine weeks of my treatments.
* On those inclement weather days, I found an INDOOR location to do some walking. Since I switched into track pants and t-shirt and gym shoes for my treatment each day, I went walking each afternoon or evening, after each treatment was over. Putting on track pants for my treatment worked GREAT for my walk that evening. Going for a daily walk was ALSO a great way to relax and unwind.
* There will likely be times when you might benefit from a nap --- and you might wish to take a nap or two on weekends, to combat the fatigue factor that you might experience.
* As the weeks of treatment went by, a Saturday or Sunday afternoon nap seemed to really help restore my energy for the week ahead. Weekend nap? Why not?!!
* You'll want to limit your nap time so that you don't interrupt your regular bedtime schedule, however. Lesson learned --- one weekday evening, I dozed off on the couch --- and that night, then I had trouble getting to sleep on time, and I felt more lethargic the next day at work. You'll find the right balance ... and best BEDTIME!
* Eventually, you will probably have a consistent appointment time for each treatment. You might begin to encounter other patients in the waiting room who are there at the same time each day, too. This might give you the chance to REACH OUT to others ... connect ... share some stories ... and offer some support ... and to receive some, in fair return. Everyone needs a few words of encouragement along the way!
* During radiation, I tried my best to incorporate more fresh fruits, vegetables, water, juice, and healthier food into my diet. I really did a much better job of remembering to drink more water during the day, and also on weekends.
* I feel fortunate that my side effects were relatively mild. I give thanks for that. The earlier bedtime was definitely essential, so that I could be on top of my game for work the following day.
* I felt that I started my radiation treatments with a proactive plan in mind. ONE DAY AT A TIME remained my focus. This strategy helped me start knocking out those treatments, one by one.
* I really tried my best to stay on track, and followed the suggestions of my medical team, so that I could navigate through the nine weeks of radiation that my radiologist mapped out for me. The things that I have listed above really helped me, all the way through.
Remember, above all else ... Start STRONG --- stay STRONG --- finish STRONG !
With all my best,
CYCLONE ~ Iowa State University