Badass Tips for Surviving Colorectal Cancer Treatment — Part 3
9 Radiation Survival Tips
Articles in this Series:
The parts of this series are as follows. Links will be added as each is published. ✅ = this article.
- Part 1 — My Treatment Plan: IMRT Radiation, Chemo then Surgeries
- Part 2– 12 Tips For After You Are Diagnosed with CRC
- ✅ Part 3– 9 Radiation Survival Tips
- Part 4 — Chemo Survival Tips
- Part 5 — Tips for After LARS (Lower Anterior Resection) Surgery
- Part 6 — Ileostomy Tips + Video: Dealing With a Difficult Ileostomy
- Part 7 — Tips for After Reconnect Surgery (Ileostomy closure and resume using your butt)
Part of my mission to give back to the CRC community is to be available to other survivors, as they go through treatment, to answer questions as best I can and to share my experience as a means of conveying hope, providing options, helping others learn from my successes and mistakes, even as they teach me things from their own experiences. If you know someone newly diagnosed or going through treatment now, please share this post with them!
When reading, please remember that every body is different and this article reflects my own personal experience and results. What worked for me may not work for everyone. Take what you like and leave the rest and always consult your care team. If you are a survivor and want to share your story, tips and advice for surviving chemo, I encourage you to do so in the reply/comments of this post. That said, please don’t condemn or call into question my personal journey, as it is just that. Thank you! If you are newly diagnosed, please don’t let this information scare you, because every body is different, each person reacts to treatment differently, and everyone does cancer their own way!
My Radiation Experience
I’m not going to lie. Radiation ended up being one of the toughest parts of my journey. That said, one more reminder that my body is not your body, and your experience could be completely different! I am told that I was a UNICORN 🦄 when it came to rad side effects.
Because I did radiation first, I had no idea what to expect. I had just begun the cancer journey and was still in the drinking through a firehose phase! If I knew then what I know now, there are a few things I would do differently and so I’m going to share those with you so you can avoid discomfort whenever possible!
I experienced very extreme side effects that I was told were atypical, even for this protocol. In fact, out of 10 people who had the same radiation I did for a similar diagnosis in my clinic, there were 2 of us who had a very rough go. Further, there is only one other person I know (in one of my CRC Facebook groups) who experienced a similar fate. That suggests your odds are pretty good. Still, I am going to tell you what I would do based on my current knowledge.
My Radiation Protocol
The challenge with all radiation is precision and thankfully, techniques and equipment have gotten much better at this over the years. My radiation treatment was called Short Course IMRT (Intensity Modulated Radiation Therapy) — What used to be a 25-day protocol (still is for some) was concentrated into 5 days at an intensity level equivalent to 25 days (in only 5). Radiation is always consecutive days with no time off for good behavior. This new protocol was developed during the height of Covid in part to prevent patients (who were potentially immunocompromised due to the cancer) the 25 days of daily exposure to Covid in clinics. My radiological oncologist told us that research found it was just as effective and in many cases more effective than the 25-day version. The downside is that you still get 25 days' worth of radiation, but in a much shorter 5-day timeframe so it can pack a wallop!
I want to mention I had a great radiological oncologist who really cared about me, my well-being, and my outcomes. Referring back to Part 2 of this series, I can’t stress how important that is!
Why radiation first?
If you’ve read my previous articles you know that we were working from a newer protocol for rectal cancer that requires radiation first. As my surgeon put it, she only had a few inches to work with down there (as compared to 3 feet of colon) given the location and size of the tumor (sigmoid colon and rectum), so she wanted every advantage going into surgery. She said she gets one shot at this so she has to get it right the first time (margins and all). Thus, the goal of radiation in my case was to shrink or eradicate the 4.5-inch tumor (and possibly the 1–2 affected lymph node(s) located at the rectum end of my sigmoid colon, which was also precariously perched on top of my bladder. My radiological oncologist said that if he did his job right, he would kill “Arnold” (the tumor) before I even got to chemo. I’m 99.9% certain he got the job done! The rest (chemo and surgery) was insurance.
Common CRC Radiation Side Effects
RadiologyInfo.org has the following information on their website about the side effects from IMRT radiation for colorectal cancer:
“As with other external beam radiation therapy treatments, there is no pain expected during the actual treatments with IMRT. However, the machine can be stopped if a patient experiences discomfort due to the treatment position or positioning devices. As treatment progresses, some patients may experience treatment-related side effects. The nature of the side effects depend on the normal tissue structures near the tumor that are being irradiated. The radiation oncologist and the nurse will discuss potential side effects and the management of those side effects.
Radiation treatment can cause side effects. These problems may result from the treatment itself or from radiation damage to healthy cells in the treatment area.
The number and severity of side effects will depend on the type of radiation, dose, and body part under treatment. Talk to your doctor and/or nurse so they can help manage them.
Radiation can cause early and late side effects. Early side effects happen during or right after treatment. They are typically gone within a few weeks. Common early side effects include fatigue and skin problems. Skin in the treatment area may become sensitive, red, irritated, or swollen. Other changes include dryness, itching, peeling, and blistering.
Depending on the area being treated, other early side effects may include:
- hair loss in the treatment area
- mouth problems and difficulty swallowing
- eating and digestion problems
- diarrhea
- nausea and vomiting
- headaches
- soreness and swelling in the treatment area
- urinary and bladder changes
Late side effects may occur months or years following treatment. While they are often permanent, they are rare. They include:
- brain changes
- spinal cord changes
- lung changes
- kidney changes
- colon and rectal changes
- infertility
- joint changes
- lymphedema
- mouth changes
- secondary cancer
There is a slight risk of developing cancer from radiation therapy. After treatment, your radiation oncologist will regularly check for complications and recurrent or new cancers.
Using techniques such as IMRT, radiation oncologists maximize the cancer-destroying capabilities of radiation treatment while minimizing its effect on healthy tissues and organs side effects.”
It’s also worth mentioning that radiation continues to work a month or more after treatment and thus, side effects can also last that long and in some cases longer.
The article does not discuss vaginal issues for women, which can be fairly common. It was suggested to me that I could and should begin kegel exercises and that using a pelvic wand or vaginal dilator as well as yes, masturbation 😳 would help to keep those tissues soft and pliable during and after treatment.
What did I experience?
I feel like it’s worth mentioning I got my second, third and fourth tattoos during the radiation phase (my first was when they tattooed the tumor during my colonoscopy). I now sport three tiny blue dots: One just above my pubic hairline pinpointing exactly where Arnold resided, and the other two on either hip. As I said, it’s all about precision so they use these tattoos to target the equipment in the exact right spots, but if you’d told me that these would be the tattoos I live with the rest of my life, I’d sure have picked something more fun like Marvin the Martian, a raven or a rainbow. 🤷♀️
You will get these during radiation prep. Speaking of prep, each time you go in for radiation, the prep will take far longer than the radiation itself! Radiation, while happening, was painless.
During the 5 days of radiation, I didn’t feel much of anything except I started to get tired about day 3. I also felt some strange vibrations in my nether regions from day 1, which the doctor couldn’t explain, but I know were not in my head. Radiation at that point certainly seemed quick and easy and I thought, “OK. This isn’t going to be so bad.”
But on day 6 (no more radiation), which for me fell on Christmas and a weekend, everything changed! I woke up and felt fine but after breakfast, my stomach started that roiling and raging which is the tell-tale precursor to diarrhea. “Here we go!” I thought, and I was right!
By midday, I couldn’t leave the bathroom and with it being a holiday, my doctor on vacay, and someone else on call, I couldn’t get the help I needed in time. By the time the holiday had passed, I had an arse inflamed and on fire with a solar system of hemorrhoids, severe and constant spasming, no appetite whatsoever (plus, I was afraid to eat), and something called Tenesmus. I have never had children, but this literally felt like I was trying to birth a baby out of my butt for days on end!
According to the Cleveland Clinic, “Tenesmus is a frequent urge to go to the bathroom without being able to go. It usually affects your bowels, but sometimes your bladder. Severe inflammation that irritates the nerves involved in pooping or peeing is often the cause. Your nerves overreact, telling your muscles that you constantly have to go.”
For the record, I firmly believe that if I had been able to get the medicines I needed that first day the symptoms started, it might not have gotten so bad, but that was not the hand I was dealt. Furthermore, my radiological oncologist was beside himself that I fell through the cracks and gave me his cell number after that, which I used. I survived! And I’m damn certain that it was Arnold fighting, dying, his fat ass kicking and screaming all the way out of my body until I pooped him out! I swear to you I have photos of a particular BM (bowel movement) that I am certain was dead Arnold. (Yes, CRC survivors take #PoopPics 💩)
Once I finally got medicinal help, it took a full month/month and a half to get back to some semblance of normal in my body, just in time to start chemo! Yay! Actually, chemo had to be postponed twice because of my condition. I lost 15 pounds in that short amount of time, which is funny because when you start treatment, regardless of your weight, they always tell you NOT to lose any weight. But when you’re afraid to eat for fear of the consequences, shit happens! Pun intended. The cancer diet works but I DO NOT recommend it!
At the time I thought I would never stop hurting. I could barely sit down. YET today, here I am alive to thrive! It sounds crazy to say it was worth it, but it was. I am cured! “Cured” is not a technical term I’m supposed to use until the 5-year mark BTW, but it keeps me focused on my remission, so fuck it!
Let’s get to the tips, shall we?
9 Radiation Survival Tips
Tip 1 — Find out what you don’t know!
My first suggestion is that you need to know and understand your radiation, process and side effects (all of them). I don’t know that each phase was described to me and I suggest you ask. I just think it’s good to know what to expect.
Tip 2 — Prepare for the worst, expect the best!
RADIATION SHOPPING LIST
Stock up and prepare for the worst case scenario BEFORE radiation therapy begins! Some of these things may embarrass you, but I promise that you will be glad you have them on-hand throughout this process and after radiation. I tell people that I have very little dignity and modesty left after rectal cancer. I’ve had too many people and things up my butt to care anymore about being demure. You just have to get over it! Here’s what you will need:
Doctor Prescribed Items — SUPER IMPORTANT!
Doctors don’t like to prescribe things you don’t need before you need them, but they also like to think that someone is going to answer your call on Christmas! So, do yourself a favor and push for these prescriptions BEFORE you need them, and hope you never do! Tell them to give you just a few of each pill to get you through if you can’t get a hold of an on-call doctor.
- Anti-Spasmodic Pills — This is the #1 THING that I believe would have prevented most of my issues once I started having side effects. If I had this script at home when the evil diarrhea and spasming started, I would have been in a much better place and healed faster. Imodium takes too long to work in many cases and dialing in the right dose can be challenging, by then, you could be in trouble like I was.
- Proctofoam — This is a foam topical steroid, which is designed to be used inside your anal cavity and is inserted similarly to hemorrhoid cream. It is without a doubt the ONLY THING that worked on the massive hemorrhoids created by all the spasming and involuntary pushing.
- Anti-Nausea Dissolvable Pills — While you may not need this for radiation, you might need it for chemo so it doesn’t hurt to have it on hand. ASK FOR THE DISSOLVABLE tablets because when you nauseous, drinking water to take a pill is beyond counterintuitive.
- A Medrol Steroid Pack — Your doctor will likely not prescribe this to you in advance, but make sure you can get one quickly if things get out of control, and don’t hesitate to ask! This finally calmed down the raging that was happening inside my body and my butt! I had two Medrol packs back to back and finally started getting some relief of my symptoms. I am not historically a fan of steroids, but sometimes you do what you need to do to get through.
Every Day Items:
- Imodium — Take this at the first hint of diarrhea and buy the multi-symptom relief, it also contains simethicone for gas!
- Butt Cream- My favorite is this one by Aquaphor
- A Bidet — There is nothing worse than toilet paper on a raw ass. Even the soft stuff isn’t soft after days of the big D. Plus, the bidet has many more benefits from hygiene to soothing, and (If you are having a lower anterior resection) having a slight enema effect if used a certain way. I suggest getting one with a water heater if you can! The one I use is a Brondell Bidet and for on-the-go I also have a Tushy Portable Bidet, which can even fit in a pocket or purse.
- Adult Diapers — I have two favs for women. FAV #1: Always Discreet Boutique Low Rise Culottes (they made me feel like I was wearing fancy undies even though they were diapers! The Black are the low rise and they come in S/M and L. My FAV #2 are Depends Silhouette Low Rise — these come in larger quantities. Men, you’ll have to do some homework! 😂
- Incontinence Pad — I bought a washable one called a PeaPod (two is a good idea, so while one is in the wash you still have a spare). I got the biggest one I could get. I LOVE MY PEAPOD and used it everywhere; On the bed, on the couch, in the car; anywhere I might have an accident. We took to calling it my “Linus Blanket” because I didn’t leave a room or the house without it! I found other brands did not compare and they as well as the disposables really make you sweat, especially at night in bed. It continued to be useful further down the line of treatment as well.
- THC??? — I put this on the list because MANY people swear by it. I live in a state where it’s legal so I bought it, and didn’t use it, but in hindsight, I feel like it would have really helped on certain occasions. AND, I also don’t know if it would have been acceptable during radiation — THIS IS SOMETHING YOU SHOULD HAVE AGREEMENT WITH YOUR DOCTOR TO USE! The reason being, especially during radiation, you can’t take anything with anti-oxidant properties or it can counteract the radiation from working! And because radiation keeps working for a month or more after you’re finished, you do not want to mess up the healing juju (or tumor-killing juju) going on down there! That’s probably why I didn’t use it. I wanted to make sure Arnold was ding, dong, DEAD!
Intimate Items:
- Kegel exercises — Regardless of gender everyone can benefit from kegels. Trust me, even if you don’t have issues from radiation if you are going to have a lower anterior resection (LAR) surgery, you will definitely want to get in the habit of working out your kegel muscles! What are kegels? According to the Cleveland Clinic: “Your pelvic floor muscles hold your organs in place while also assisting with bodily functions like peeing, pooping and sex. Kegels involve tightening and then releasing the muscles in your pelvic floor to strengthen them. Doing kegels can help with issues such as incontinence.” In other words, strong kegels help the healthy functioning of your bladder, vagina, and your butt for pooping as well as being able to hold in that which should not come out until you want it to! Masturbation and sex (with or without penetration) often includes the use of kegel muscles, but targeted kegels are also very important! My PT has at least 30 different kegel exercises she has me rotating through daily. I highly recommend asking for a PT referral as soon as you can get one!
Sidenote: Having partner-sex is a personal choice at this time because sexual desire can be greatly diminished during treatment and sometimes it can be painful or uncomfortable. Having a patient partner helps — ask them to go with you to PT (and the doctor) so they can get the education as well!
Finally, for some, manual stimulation of the sex organs (clitoris or penis) can sometimes help with getting the sphincter muscles to release during spasming (which can happen with tenesmus). Some people use a bidet for this. Much of what you experience to relieve your symptoms will be trial and error. My best advice is to try to be comfortable with the uncomfortable — for instance, think of masturbation as therapy because it is — so that you can have as close to a normal life after all this as possible! If we don’t talk about what happens to our bodies during this time, how will others know how to help themselves?
2. Pelvic Wand (for women and men) or a Vaginal Dilator (for women) — As with everything, check with your doctor or physical therapist about the use of these tools (PT’s are often more well-versed in these areas and sometimes doctors don’t like to discuss the intimate stuff as much, so don’t hesitate to get a referral to a PT right away!) With both radiation and surgery, both of these items work to help prevent or correct atrophy, constriction, narrowing, and shrinking of the vagina and/or the anal canal during treatment and after surgeries. Check with your doctor or PT about the timing for use of these in the anal area, especially after surgery — Most surgeons do not want you doing PT until at least the 8–12 week mark or later post-surgery and/or using the pelvic wand for dilation and muscle stimulation may require a longer wait.
3. Lubricant — Radiation has a tendency to dry out the tissues in the pelvic region (sometimes this is an ongoing challenge). Find a natural, water-based lubricant to use with the above-mentioned “toys” as well as for your personal and partner intimacy. This is a good Aloe-based one.
Tip 3 — Visualization & Affirmations
This falls in the category of, It can’t hurt you so you might as well try it. 😉 When I was on the table getting my radiation (they played a music genre of my choosing) I often did visualizations with affirmations to keep my mind focused on positive healing thoughts. In a previous post I also discussed how I felt visited by angels during this time. You can certainly come up with your own affirmations and visualizations, but I’m also providing you with a simple one you can use:
Picture yourself in your most favorite, peaceful spot. Tune into it completely. What does it smell like, feel like and what elements there are grounding for you?
Visualize yourself surrounding by healing light shining down from above and washing over your entire body and soaking it all in to every cell, atom and organ. Say these words over and over until your radiation session is complete. If it’s too much to remember just choose a portion that resonates with you and remember it.
“I am the picture of perfect health. I am safe. I am well. I am strong. Every cell, atom and organ in my body, from this day forward, is working in my favor. This radiation will target only what is needed and eradicate all cancer cells.”
Tip 4 — Don’t be a hero!
Don’t try to tough it out. I think I did this too much and too often, or at least Doc (Amy) would tell you I did. I guess on some level I didn’t want to “bother” my doctors or inconvenience people, or if I’m being completely honest, I didn’t want to be “that” patient that is a PITA (pain in the ass). But frankly, that was just my own screwed-up thinking and I got over it! Now I say, Don’t hesitate to call your healthcare provider if something feels off or if you have pain, a symptom, or a side effect that doesn’t go away quickly or that over-the-counter medications won’t take care of! If it’s strange, don’t ignore it! If it’s a typical side effect but more severe, let someone know. Not only are you trying to feel as good as you can despite what you are going through, you are also trying to ensure the best quality of life you can for after treatment! That said, also talk about the embarrassing things! (I discussed this in part 2.) If you’re having any troubles that pertain to your sexual health for instance, spill it to your doctor and GET HELP! Keeping it quiet only hurts you (and your partner) in the end.
Tip 5 — SLEEP, REST, REPEAT!
One of the most common and most impactful side effects of radiation is just how freaking tired it makes you. I’m not talking yawn, I might need a nap later, tired. I’m talking about falling asleep sitting up while you’re typing, tired! It just zaps all of your energy. Complete and total exhaustion is a better way to describe it. Your body is working SO HARD to try to kill cancer and also to restore your cells after radiation. Just let it do its work. Don’t fight it. Think of it as the one time in your life when you can HONOR YOUR BODY and get all the sleep you want and need. Everything else can wait until you’re cured! 😉
Tip 6 — Try The Toddler Diet
The Toddler Diet is a recurring theme in my posts. Sometimes there is just nothing that settles the body, the gut, and the digestion down like those soothing comfort foods from childhood. It’s also known as a “Low Residue” or “Low Fiber” diet. If I knew better and had it to do over again, I would have started the toddler diet BEFORE my radiation started by at least a few days. I think it would have helped, especially after the side effects began. My last meal, so to speak, before side effects began in earnest was (Christmas Eve) lasagna with a big salad, garlic bread, and a small glass of wine. Really not great coming out the other end with a vengeance! 😬 Today, I eat a high-fiber diet most of the time (thanks to Vitamin I-Imodium) but if I ever have a rough day, I go right back to the Toddler Diet for a day or two. The toddler diet also contains (stool) thickening foods. If you are gluten-free, make adjustments based on your needs. Here are some examples of what the toddler diet contains:
- Banana
- White Rice
- Apple Sauce
- Yogurt (especially Greek for more protein)
- Scrambled Eggs
- Cheese
- Cottage Cheese
- Grilled cheese
- White or non-whole grain bread
- Low fiber cereals
- Cream of Wheat
- Peanut Butter
- Peanut butter and jelly (or honey)
- Boost high protein shakes (I prefer these because the sugar content is lower without a lot of fake sugar and the protein is 20g)
- Plain roasted or shredded chicken
- Fish (cooked with little to no oil)
- Dairy is ok (if you’re not lactose intolerant)
- Low fiber Crackers: Saltines, ritz, townhouse, club (Goldfish crackers are my go to now since I can’t have popcorn anymore)
- Pretzels
- Cooked veggies with no skins or seeds (cooked carrots are a great choice)
- Marshmallows and Rice Krispie Treats (in moderation due to sugar — marshmallow is soothing and thickening)
- Diced canned peaches
- Decaf tea and coffee (caffeine can stimulate the bowels and exacerbate diarrhea)
- Diluted apple juice
- Frosted Cinnamon Poptarts (my personal favorite and as soothing as Goldfish to my tongue and tummy)
You will want to avoid spicy foods and citrus as well as thick skins, seeds (especially tiny ones like chia), kerneled corn, corn on the cob and popcorn especially if you have diarrhea or an unhappy gut!
Tip 7 — Stay Hydrated!
First and foremost, if you have diarrhea, you’ve got to replace the water your body is losing so water is a must! Plus, I like to think of it as moving the bad stuff out of your body faster by putting the good stuff in. Staying hydrated is essential during every part of your treatment and recovery process and ongoing. Water is a big part of that. Nothing processes quite the same as water, especially in your situation, so I always try to drink more water than other things. If you don’t like water, maybe try fizzy water (sparkling mineral water) with or without flavor (but no sugar or fake sugar). Pay attention though because carbonation can increase gas and cause you more discomfort! Additionally, I found joy in a lot of decaf teas. Check with your doctors before drinking certain herbal teas and green tea because some of these contain antioxidants that you can’t have during radiation.
Tip 8 — Be Patient!
As I mentioned earlier, radiation continues to work for a month or more after it’s over. That said, side effects can last for a while for some people. One day it may feel like you can’t take it anymore and the next day you realize it’s over and past and not only did you live through it, but you emerged on the other side even more of a badass! 💪 Whatever your experience, give yourself as much grace and latitude as you can. What you are going through is really freaking hard! Cancer doesn’t strike fear in the hearts of most people for no reason, and while all cancer treatment sucks, there are certainly some cancers that require what should be considered rare forms of torture in order to eradicate them. I promise that you are stronger than you know!
Being patient goes for supplements and that green tea you may love, also. Be mindful of what you are putting in your body during and after radiation so that you are not counteracting the powerful healing/cancer-killing properties of the radiation itself.
Tip 9 — Ring the Bell! (Or not, it’s up to you)
I had no idea what ringing the bell meant until I was given the opportunity to do it at the end of my radiation. For those who don’t know, the end of radiation and chemo offers patients the chance to ring the bell to celebrate the achievement of getting through treatment. For some, it’s a marker of their progress and a milestone. There is always more than one side to everything. I didn’t realize this act is controversial for some and that not everyone wants to ring the bell. At the time I also didn’t think about the number of people who ring the radiation bell because their chemo is an ongoing process and they don’t get to ring that bell. 😔
“Ring this bell, three times well, Its toll to clearly say, my treatment’s done, This course is run and I am on my way.”
For me, ringing the bell was a true celebration of ending the first phase of my treatment (“I did it!”) but it was also a pat on the back for me for being brave enough to go through it (some people choose not to).
“I wanted to celebrate every single achievement big and small on my journey both to remind myself how strong I was and also to continue to motivate myself to get through it.”
In this I say, to each his/her/their own. Each person has to decide for themselves, but whatever you decide, know that you are still an amazing badass cancer-fighting warrior whether you ring that bell or not!
Final Words: KFG my friends. We can do hard things!
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I am not a doctor. I am married to one, but she’s the other kind thus all opinions herein are my own and should not be considered as medical advice. Please, do your own homework, make your own choices, and consult your own experts!
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