Radiation... What They Don't Tell You.
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Today was another grim reminder of the uphill battle that I continue to face. Another round of antibiotics, once again, failed after just less than a week. It only takes a mere 48 hours before the rebound infections come back in full force. It only takes a mere 24 hours before the physical toll begins to hit me, all over again... Today was another grim reminder. Another antibiotic resistant infection, rearing it's ugly head and a team of doctors trying to figure out what to do next . It was another grim reminder as well of what radiation can do to not only it's target area, but as well, your good organs. Your overall immune system.
This blog entry is about all the ins, outs, do's and don'ts. All the things that you don't find out prior to and after receiving radiation therapy. All the things that you won't hear from Oncology.
Of course, this is based off what I learned from my own personal experience. After receiving a maximum dose, fast track, course of radiation.
Radiation therapy did not work for me. I did not wind up with my miracle cure, but it did change me for the better. I also learned a great deal before, during and after receiving radiation. By sharing a few ins, outs, do's and don'ts of my own personal experience, might help someone else along the way... Those who are making a very difficult, life altering, life changing decision. All in hopes of a cure.
The ins, outs, do's and don'ts...
Radiation treatment-before-during-after
*I was in far better health, before radiation, and that isn't saying much
*Radiation can scatter for weeks, months and even, years
*Radiation is the harshest, most deadly, long term-unknown complications oncology treatment and is not to be taken lightly
*Expect to smell the radiation after each session. Radiation has a way of perforating through the skin
*Depending on the area receiving radiation, expect your bones to ache. Radiation is known to dry out the bones. Expect to have a long term, deep ache. This is nothing like the ache you feel after a good work out or pulling a muscle
*Oncology will give you a printed out radiation schedule. Plan to stick to the schedule and be on time! Cancer treatment centers run a very tight ship!
*Radiation is like an internal match, that doesn't stop burning
The ins, outs, do's and don'ts...
Cancer centers... Patient waiting areas
*Word to the wise... patients are on scheduled visits, cycles. No one wants to socialize nor do the patients who are waiting to go back with their directed teams. These cancer patients are extremely sick from the treatments they are going through, MUM is the word!
*Those who wait in the waiting area like the quietness and time to reflect in order to collect their thoughts while anxiously awaiting the return of their loved one. One can only relate to what I am saying, if you are going through cancer treatments. The waiting room atmosphere is a very sobering one. An eerie silence. Please go in the same way as you leave... quietly
*No one wants to discuss their battle due to feeling so sick. Puzzles, magazines and other quiet activities are provided in the waiting area for a good reason. I suggest bringing a good book or magazine
*Do NOT use the patient restrooms or those located directly outside the treatment facility. It's very common for patients to get sick in those same restrooms. Including those located outside of the treatment rooms. Please don't risk patients by spreading your germs
*Do not bring a football team with you to the treatment center. Recovery rooms for patients are very limited and so is the space for loved ones
*For those a bit overly religious... Please do not bring your bible up to preach or pray. Cancer treatment centers are the wrong time and wrong place
*Treatment tote bag, A MUST! Trust me, by experience, you will use some or all before, during or after treatments. Keep the tote handy, front passenger area of your car. We created our own during my treatments which included the following.
Large zip locks bags in case of vomiting, baby wipes, paper towels, peppermint drops for nausea, warm hand wraps-can buy at local drug stores, sunglasses for sunny days, airplane pillow, blanket, diet 7up, saltine crackers. You will thank yourself time and time again for having a handy go-to tote!
*Radiation patients... Expect the first two treatments to go seemingly well, that is, after the first initial radiation burn. After that, it's all downhill from there...
The ins, outs, do's and don'ts...
Post-treatment. Home recovery
*Same with not bringing a football team with you during cancer treatments. You will not be feeling well nor up to a lot of company while recovering from treatments at home. Patients need their peace, quiet and rest
*Soup, saltine crackers and diet soda will become your prime staple foods when it comes to your post radiation treatment diet. Make sure to stock up!
*No one knows much when it comes to rebounding infections due to radiation therapy. I am a constant, rebound, infection patient. Expect post treatment infections to be brutal. Staying on top of them by seeking medical help ASAP is vitally important!
*As Eric knows by experience... Be prepared for when the radiation starts attacking your GI tract. Loved ones and caregivers should always be near the patient during recovery. There will be many times when the patient is far too weak to get up, stand up and walk on their own
*It's perfectly OK to look like Casper The Friendly Ghost. Radiation takes the color from your entire body, especially your complexion
I believe in the honesty game when it comes to radiation therapy. It would be nice if someone came out with a book on radiation expectations for not just the patient, but loved ones, friends, family and caregivers. Oncologists will never tell you what to fully expect during and after radiation, because they don't even know exactly what to expect. Most cancer patients choose not to talk about their journey, out of fear of scaring others and being far too weak to share.
REMEMBER... You have the choice to make your choices when it comes to cancer treatments. All cancer treatments are experimental. No one is for certain of the outcome. The same holds true for radiation and other cancer treatment complications.
REMEMBER... You can always change your mind about radiation therapy, but you can't after all is said and done.
Posted by GastroparesisAwarenessCampaignOrg.
at 12:01 AM EST
Updated: January 16, 2017 7:01 PM EST