If you know me this might be shocking, but truth be told, my haircare routine is quite low key these days. I’ve come a long way from black hair dye in my parent’s bathroom (sorry mom!). In fact, right before I was diagnosed with cancer in 2018, I cut off all the dye out of the ends of my hair so I could start fresh. I was just so tired of spending time and money at the salon. Little did I know less than a month later I would be diagnosed and then begin dealing with chemo induced hair loss.
Luckily, I did not lose my hair during my chemo treatments. It did thin but I figured it was temporary and surely but slowly, my hair regained back its strength and length. I keep it simple these days with just a few products from a few brands I love!
This Innersense organic beauty scalp scrub is everything you need before a good shampoo! It’s tingly and minty and smells divine. We spend a lot of time and effort exfoliating everything from our faces to feet but never our scalp! It takes a few minutes to work into your scalp good but I try to do this treatment once a week, especially with all the dry shampoo I use!
Although I have been using Beautycounter for a few years now, I have to admit it took me a while to try the shampoo. I have used numerous clean(ish) drugstore brands but I always felt like they left my hair feeling on the dry side. I only shampoo my hair once or twice a week so honestly, I don’t go through these fast. They smell divine and leave my hair feeling super silky and soft. I often use the conditioner as shaving cream as well!
I will forever sing the praises of Primally Pure! I have loved every product I have tried from them and this dry shampoo is no exception. There is a shade for both light and dark hair colors. It’s just easy, it works and I know with this brand the ingredients are great as well!
I’ve also jumped on the no heat train as much as I can. My schedule these days, especially with grad school, means that I’m often showering and washing my hair at night. In the morning, I often throw it up in the sway (seriously, check this out if you haven’t) or in a bun with some hair elastics. This gets me through my morning workouts and then I work in the dry shampoo after my morning shower. It’s an always evolving process, am I right?
I’ve been an ostomate for almost three full years now. I’ve come a long way from the clear, drainable, cuttable bags the hospital gave me. Adjusting to your new digestive system is always a work in progress for sure. The hospital will likely send you home with bags until you can find your right fit. In the beginning, there’s also the added stress of trying to find appliances and systems that work for you. You’ll have to supply your retailer with the prescription from your doctor as well. Most supplies can be ordered via mail from large distributors or from a local medical equipment supplier (call first to check, not all carry ostomy supplies).
Ordering Samples from Companies
Additionally, companies like Coloplast, Convatec and Nu-Hope will send free samples if you just fill out a short form online. This will at least allow you to try out new bags and systems to see what your preference is. Believe it or not, there are differences in the size, textures, filters etc. You’ll find in the ostomy world people tend to have their favorite bags they are loyal to. That’s because once you find a bag and routine that works for you, you don’t mess with it! So if there is a bag you’ve heard about or want to try, search the company’s website, they likely have a place to request free samples. A few are linked above 😉
Ordering Your Ostomy Supplies Monthly
Keeping track of supplies and ordering in a timely manner is another thing to stay on top of. It took me a while to realize the rhythm of how many bags I go through when to order etc. Luckily, most companies I have ordered from have an automatic reorder that you just have to confirm via email, which can help ease the burden of remembering. However, no matter how many of these reminders I have in place, stuff just happens. I have blowouts, I go through more bags than expected or I’ve decided a different bag works better in the water etc. This can have me making separate orders or trying to track down the specific pouch I need and the quickest way to get it.
Truth be told, one time I even went on vacation and packed the entirely wrong bags. They didn’t fit the baseplates I brought with me. (Let that be a lesson to actually keep your supplies organized so you know what you’re grabbing!). This led me on a wild goose chase to a hospital to track down more bags. Oy vey, not fun! I’ve also had to order bags from Amazon out of pocket as well. Unfortunately, sometimes that is the quickest and easiest way for me to get the supplies I need.
Ostomy Supplies are Unaffordable
Unfortunately, the reality of ostomy life is that often times supplies are unaffordable. Many ostomates are thrown into the ostomy world only to find that they are underinsured and their insurance does not cover the ongoing monthly cost of ostomy supplies. I have found this out first hand. It’s wild to me that I will live with this medical condition for the rest of my life and I will also pay out of pocket for the rest of my life for my supplies. The ongoing monthly costs of ordering not only bags but proper wipes, creams, etc add up quickly. Not to mention the people who are uninsured and suddenly find themselves incurring these out of pocket costs as well. It can be financially crippling. Can you imagine how anxiety-inducing this is? Knowing you only have one bag left to use. I have been here. It’s not fun.
Free Ostomy Supplies in Orlando/Surrounding Area
This leads me to my newest venture which is volunteering to run this ostomy supplies venture in the central Florida area. With donated ostomy supplies from caregivers and patients, I will be able to provide ostomy supplies free of charge to the surrounding central Florida ostomates in need.
I took over this venture from a fellow ostomate who ran this for twelve years providing free ostomy supplies! It might take me some organizing but I am happy to be able to do this so everyone has access to basic ostomy supplies. Of course, I won’t have every size appliance; however, I’m confident I’d be able to help at least some with the inventory I currently have. Bags, ring barriers, paste, powders, adhesive removers, I’ve got a lot of it!
The supplies can be handed off in person at a meet-up spot or mailed, whichever is preferable in the greater Orlando area.
If you know of an ostomate or ostomy group within the local area, please share this information with them! I plan to spread the word as I can at my local oncologist’s office as well as in other advocacy groups I’m a part of.
Attempting to slowly take a message from the mess, I’m happy to take this venture on to help out fellow ostomates!
Technically speaking, I guess my last form of cancer treatment was on August 20, 2019. That is when I endured my twelve-hour surgery to remove my rectum, build a permanent colostomy, take out the rest of the cancer tissue that was present, conduct intraoperative radiation, and do a complete hysterectomy, including ovaries. A lot.
I remember one of the surgeons told me that by Halloween I would feel “back to my new normal!” Having never had major surgery or any medical issue at all really, I was a little taken aback at first by the recovery process. I actually had trouble walking again and almost passed out when the nurse tried to help me walk after surgery. Eventually, though, I mustered up enough strength, and making those regular laps around the hospital floor became routine. Multiple times a day. Have to keep the body moving and blood pumping I guess! I actually only spent six days in the hospital after that extensive surgery, only six! For some reason, my body just…worked.
To say I was terrified of what body I would wake up to is an understatement. I had never even had a real surgery before for God’s sake! I did not know that my ostomy would be permanent until I woke up from surgery. I knew there was a chance yes, it was discussed beforehand. However, my surgeon also told me she would do everything she could to avoid it. We talked about margins and LARS. We discussed quality of life and what it meant. It was heavy.
I could not eat for the first few days, liquid diet only. Then they slowly increased my food intake to see if my bowels would “wake up”. This my friends, is a terrifying moment wondering if your new bathroom system is going to work? So we just have to…wait around? Sure enough, a nurse came by to check and said there’s output in your bag. I was kind of floored I didn’t notice (was also on a lot of pain meds!). The nurses came by and emptied my bag for me every time they came in.
On the white board in the hospital room there was a series of videos they wanted me to watch about my ostomy before being discharged. I was not into this. The conversation went something like this:
Husband: You have to watch these videos before we leave.
Me: I’m not watching that.
Husband: Yes, you are.
Me: No. I’m not. I don’t care about it.
Husband: Yes, you are. *turns on videos*
Sure enough, by Halloween I actually was feeling pretty good. I drank two whole bottles of wine to celebrate! [Insert meme about how Catherine does not drink anymore because she has lost the power of choice, this issue predates cancer, but cancer gave me the gift of realizing it] I had a small blip where I was briefly hospitalized due to a potential blockage about 6-8 weeks after surgery. But with fluids, it seemed to clear itself up. I even avoided the dreaded NG tube. I was about ten seconds away from meltdown city when the nurse bounded into the room and said “hold on, they said don’t place the tube yet, they don’t think it’s a true blockage”. I surmise it was an adhesion but I really haven’t had any issues since. Other than that my body has just…worked. I have had some frustration with my ostomy and finding my new routine but that’s to be expected I guess.
Other than that, survivorship has been a breeze! Just kidding. Albeit, it’s been amazing to be on this side of cancer and be no evidence of disease and i’ll always be grateful; however, it does come with its own set of challenges. I thankfully do have a good quality of life now but there are lasting side effects I will deal with for the rest of my life.
I have had innumerable adventures in survivorship such as learning to manage and irrigate my ostomy, learning to dress my new body, finding medical providers to manage my care going forward, managing menopause symptoms and medication, managing my own rage and sadness, managing ongoing skin issues from vaginal reconstruction, trying to build my life back after a seismic shift from cancer. It’s a lot.
Truth be told, I was in a hard spot prior to cancer and cancer gave me the gift of knowing I wanted to do more with my life. Prior to cancer I had been fired from my job, was generally discontent with motherhood and life, and had little direction. My husband and I decided I would stay home for a few years with the kids since having multiple kids in daycare wouldn’t even make my paycheck worth it. Enter cancer.
Honestly, making a lot of decisions after cancer, I kind of felt like I was floating through them. In a nutshell, I did have trouble controlling my drinking prior to cancer. But I was not able to admit I had a problem. After my cancer treatment concluded, I found myself still stuggling with the same issue and knew it had to go. I fell into the world of recovery and had never identified or loved anything so much. I started praying for direction and guidance and got a job at a local university. Not only a good job, but a great job that actually is flexible and aligns with my kid’s schedule well. Throughout this time I was also regularly attending my own therapy sessions. I would exit every therapy session and could hardly get the pen to write quick enough as I tried to word vomit back down everything I had just discovered about myself. My husband and I also went to couples counseling together during this time. It was fascinating, honestly. I learned so much about my own behavior and how to ask for what I need. How to act in a relationsip and respect the other persons needs too. I did have a good friend who gave me a journal during treatment. It has exactly zero entries in it from my year of treatment.
The summer after my treatment ended I began to seriously think about going back to school to become a therapist or counselor. I needed to make income to help my family but could I also actually find something I loved? I ordered my transcripts from undergrad without saying anything to anyone and began looking up schools online. I wondered if I could really do it? Should I attend the university where I was employed part-time? Maybe getting an online degree would be easier? Could I afford it? I spoke with admissions from a few different colleges. I prayed about it. I talked myself out of it numerous times. I ultimately applied to and was accepted at the small university I currently work for part-time. While my employment does not cover any tuition, I have applied for over fifty scholarships and aim to remain employed to help cash flow my masters. Of course student loans are there too, to help me make my way through school.
I’m incredibly excited about it; however, I’m also plagued by a lot of doubt as it gets closer. Just mainly keeping up with life demands alongside work and school. Let’s face it, this program will take me longer to complete than the traditional two-three years it does for a full-time masters student. By the time I complete this program and am ready to enter the workforce, I’ll probably be around 43 years old. Just starting my career at 43. That’s wild. It seems reckless in the most adult and responsible way you could be reckless. I wonder if this is financially irresponsible, as I’m probably supposed to be saving for my own children’s college fund and not my own. I’m questioning my time management skills and how I’ll ever be able to study, read books, make dinner, write papers, work, shuffle to practices, keep up with voluneer commitments, walk my dogs and remember to put out the trash.
But I’m also incredibly ready and grateful for the challenge that lay ahead too. I decided after cancer I wanted to be a helper and I do have some really cool visions of stuff I could do to support early onset cancer patients and new moms. Can I group that together?! I’m not the first working mom in history to do it and I certainly won’t be the last. I guess that’s why I kind of feel like I’m floating through it all because if you know me, I do not take chances. I do not typically do hard things. I usually take the easy way out. But cancer made me realize my time was almost up and I honestly just think I’m capable of so much more. I want to know. This time my past is shaded by events that I know have made me stronger and more resilient. I just hope I can be trained to pass on that same spirit of resiliency.
Countertime Tetrapeptide Supreme Cream – This night cream is super thick & indulgent. It’s from the Countertime line for antiaging. It uses a safer alternative to retinol, Bakuchiol. With continued use, you’ll wake up to more radiant, youthful-looking skin for sure. You can slather this cream on top of any other treatment creams you might use for spots or discoloration. It’s definitely one to check out if you are looking to add something extra to just boost hydration at night.
Countermatch Adaptive Moisture Lotion – For your everyday, lasting hydration look no further than our Countermatch line. Perfect for sensitive skin, soaks in quickly, helps even out skintone. This entire line in the white bottles will deliver your skin so much goodness to keep it hydrated and supple. Just read the reviews.
Lotus Glow Cleansing Balm – This is another favorite for dehydrated skin! The uses are endless: it takes off makeup, use it to double cleanse, use on cuticles and elbows, lip balm before bed…
Last but not least do not forget about moisturizing your actual B O D Y! I’m telling you, from internally to externally, hydration is our biggest problem! No matter your preference, Beautycounter has a safer but luxurious and high performing option!
If I have to pick a favorite I would go with the hydrating body lotion, the newly relaunched packaging is refillable and it’s a great everyday staple to hydrate the skin! The luminous hydration body oil also goes the extra mile and is great to pat onto damp skin right out of the shower. Lastly, if you’re just looking for summer in a bottle, look no further than the melting body balm, it will quickly become your favorite with the scent of summer and a formula that melts as you apply!
Don’t forget to apply the 30% off code and you can scoop up a lot of these hydration stars for under $50! That is a great clean additional to your hydration routine!!
I’ve recently tried to cut out coffee after 1pm (ok, 2pm). I honestly don’t have a ton of issues with sleep, but I do know that I drink a ton of caffeine, so in the name of health and better habits I’ve recently tried out some better alternatives! Here are my thoughts:
Breakaway Coldbrew Matcha– (25mg caffeine per serving) This is so interesting because it’s cold brew and I’m always on team iced! I got this as a gift and I was not used to seeing cold brew matcha, I thought it was unique! Matcha is known to help stabilize blood sugar levels, so it’s a great choice for diabetics (or really anyone!). To get the full benefits, it’s best not to drink with milk (see their FAQ page); however, if you’re looking for a healthier alternative this is definitely a good one to try. I don’t mind the taste, though I do sweeten it with some honey!
Amazing Grass Green Superfood Effervescent Greens– (85mg caffeine per serving) Ok. I’m going to be totally transparent on this one, these do not taste good. If you are a baby about stuff tasting “healthy”, please scroll past. However, I really love these! I have purchased these a few times. No idea how I came across them but they are convenient to drop into water bottles. I definitely get a noticeable boost of energy with these and I like the way they make me feel. No jittery feeling. Also a plus for anything that has a serving of greens in it. Two thumbs up!
Liquid IV Energy Multiplier – (100mg caffeine per serving) I’m sure you’ve likely seen this brand all over Instragam. Truthfully, this was an impulse Costco buy that did not disappoint! The ginger-lemon flavor is actually quite good! I kept a few of these in my purse and at work for a quick and convenient alternative to afternoon coffee. Definitely will purchase again!
If you have followed me for any length of time, you know I am a fan of Beautycounter of course. Naturally a makeup and skincare junkie I truly did love and use the products first, then thought dangit, why can’t I build a business too? So slowly but surely I have done that. Don’t let anyone tell you selling skincare and makeup is silly! The market for clean beauty is literally exploding! Beautycounter has really capitalized on a movement of not only clean ingredients but full transparency in sourcing and production etc. They really do set the standards high for clean beauty. Some months this Beautycounter business has brought me as much as my part-time job does working 29 hours a week, that’s pretty good in my book!
So let’s break down the cleansers Beautycounter offers and I’ll give you my two cents on each!
Countercontrol– This cleanser is one of my go-to’s right now, especially as the months start to heat up and my garage workouts get a little sweaty! It’s deep cleaning, foaming, gentle, not overdrying, and exfoliating. Honestly a little goes a long way so the tube lasts a long time. I really need one to live in my shower and one on my counter, it’s definitely a regular in my routine these days!
Countermatch – Countermatch is the longtime favorite in our lineup! It’s balancing and hydrating, soaks in quickly, and is brightening. I guarantee if you regularly use this line you will see your skin tone balance out and brighten. I used this line exclusively myself for the better part of last year and it’s so great! If your skin is combo/normal or on the dry side, this is a great line! It’s luxurious and will really leave your skin soft.
Countertime – This is our newest line for aging skin. Formulated with a safer alternative to retinol, bakuchiol. This cleanser is oil-based as opposed to our other cleansers, and it helps to maintain the integrity of the skin’s moisture barrier. My best tip is to really rub it into the skin and then use a damp washcloth to wipe it all off. Double cleansing can also help you achieve that clean feeling if you’re not used to oil-based cleansers!
Speaking of Double Cleansing…
…don’t count it out! Especially once you’ve established a full skincare routine! There are benefits, especially done at night!
Gosh, I still so vividly remember sitting in my surgeon’s office at MD Anderson Cancer Center. I had already been diagnosed at my local hospital and had traveled to a larger center to get a second opinion. My initial staging showed that the tumor had grown through the rectal wall and jutted into my posterior vaginal wall. It was also detected in my lymph nodes. My first meeting with my surgeon entailed a very invasive physical examination and extensive conversations that included a lot of drawings. I wish I still had them!
After we had been in that meeting for quite some time, I asked, “So, is this colon cancer or rectal cancer?” I honestly did not know. The drawings got confusing. She replied, “The tumor is not located in your colon, it’s located in your rectum.” Hmmm. Not the answer I was hoping for. I guess none of this was the answer I was hoping for.
Colorectal Rectal Cancer Awareness
Since my diagnosis exactly 809 days ago, I’ve made a commitment that I’m not going to let the shame and embarrassment stop me from advocating for other young people. My name is Catherine and I am a colorectal rectal cancer survivor!
What’s the big deal you may ask? Well, actually, the cancers are in fact different.
In a nutshell, rectal cancers can sometimes be more difficult to treat because of the small nature of the area. Also, fun fact, your rectum does not have this protective layer your colon does (the serosa) so it’s easier for the tumor to break through and spread…just like it did in my body.
No matter how you slice it, colorectal cancer is on the rise as a whole. The treatments and procedures for them do differ slightly though.
Additionally, just the stigma of rectal cancer altogether. Who wants to talk about their bathroom issues? I get it, I do. It could just save your life though. I cannot stress enough that while I did realize something was going on, I also was floored to be diagnosed at stage 3C because I was still functioning well. I was living my life, working out, taking care of my kids. All with this monster growing inside of me.
Treatment options for colon and rectal cancer differ also. It’s common that rectal cancer surgery will be last. This is called neoadjuvant therapy! The chemotherapy and radiation aim to shrink the tumor to make surgery in such a delicate area easier. There are even watch and wait options that patients do now and avoid surgery altogether! This isn’t an option for more advanced rectal cancers typically but how great for some patients to avoid surgery altogether!
They are even continuing to research differences between cancers in the left side of the colon versus the right. It’s pretty amazing to think of the headway they’ve made in even the last decade with colorectal cancers.
Remember that colorectal cancer is preventable with regular screenings (if you are 45 or older) and paying attention to your body! I will not die of embarrassment! I don’t want you to either!
On more than one occasion I’ve been asked for a recommendation on what to get a cancer patient. Someone’s mom, dad, brother, friend, teacher, aunt, cousin has been diagnosed with something that has just flipped their world upside down. I’ve also been on the receiving end of many thoughtful gifts during my own cancer journey. Without further ado here is my list of things I just generally love, was gifted during treatment or wished I was gifted during treatment!
Cute loungewear set – No way around it. A cancer diagnosis likely comes with having a lot of time to sit around while in the infusion chair or getting extra fuilds after IV chemo. A cute set in their favorite color is sure to make them smile. I received several pajama sets and sweats that are so comfy!
Manta Sleepwear Mask – oy vey! If you are going to get them anything I will highly suggest this mask! It is oh-so-comfy with little love pockets for your eyes and it filters out every last ounce of light. A must for the hospital stays. I wish I would’ve had one during my stay!! (I did have lots of earplugs on hand, hey, add that in with the mask!)
The Cancer-Fighting Kitchen – My sister introduced me to this book and honestly, my sister and her chef husband are the main reason I ever ate anything out of it! It’s full of so much great information! Recipes are stuff you can make ahead and freeze for when you are on chemo weeks and just can’t stomach eating. I remember specifically eating leek soup and carrot soup. The mineral bone broth recipe is quite extensive but so very healing. Delivering a batch of mineral bone broth + a copy of the cookbook will be sure to lift their spirits. So very thoughtful!
No Cure for Being Human – While we are on the book front, this is another great one. Written by a stage IV cancer patient, Kate attempts to answer the question how do we move forward with a life we did not choose? Hard stuff. Important stuff. She is brilliant in everything she writes!
Worry Dolls – I was gifted some of these from a good friend and I thought it was so sweet. Honestly, I had never heard of the tradition before. According to legend, Guatemalan children tell their worries to the Worry Dolls, placing them under their pillow when they go to bed at night. By morning the dolls have gifted them with the wisdom and knowledge to eliminate their worries. The story of the worry doll is a local Mayan legend. It’s a unique gift, an unexpected treat sure to make them smile.
Ohyouresotough – This shop has the cutest funny cards and gifts for cancer patients. Seriously. Go check her out. She is funny and brilliant and support small bussinesses!
Additional ideas to consider: gift card for acupuncture (often helps with side effects of chemotherapy), starting a meal train (be sure to ask about any dietary restrictions, preferences etc.), a pretty journal with a pen, or what about a random snail mail letter letting them know you are thinking of them? I cannot make this up that a friends father clipped out comic strips for me and mailed them to me every week. Religiously. I never forgot it. I still have them.
If you click on any of the links above, I am going to receive a tiny commission. YOU, most of the time, will receive an offer, so it’s a win-win! The products I talk about on this platform are the ones I truly love!
When I was a little kid and would complain about something, my grandmother would always respond with, “offer it up, Catherine”. At the time, this was just a very grandma-ish saying and I gave it no further thought other than I always knew that’s what she was going to say.
Anyways, fast forward 25 years or so and that phrase has taken on a whole new world of meaning to me personally. I’ve hopped on the bandwagon of doing a word of the year rather than some resolutions that I never keep and this year I’m choosing the word/word (there are no rules, I can do what I want…)
[ aw-fer, of-er ]
to present something as an act of worship or devotion; sacrifice
an act or instance of offering:an offer of help.
[ aw-fer-ing, of-er- ]
something offered in worship or devotion, as to a deity; an oblation or sacrifice
a contribution given to or through the church for a particular purpose, as at a religious service
anything offered as a gift
Ok, hear me out as I ramble what this means…
My word or phrase this year is to remember that no matter what, I can offer it up. More importantly, it’s not about me. How can I get out of myself and be of service to others? I think that tends to make our own problems smaller. I think this can happen in a number of ways we likely don’t even think about. Maybe it is doing some extra for a coworker at work…or maybe it’s just tipping more, tithing more, finally doing that volunteer work, being socially active on issues you care about, praying more for others, or reaching out to those you know you avoid for a reason. Personally, I’ve started doing some service work in different organizations and trying to be more invested in my own future.
I try to remember that when I am rageful about my ostomy irrigation taking up time and being messy, I can offer it up and meditate on the fact that a lot of people don’t have this option to manage their ostomy. Irrigation gives me my freedom back.
That when I feel frazzled during the week from the work and kid grind, I can stop and remember to not take everything so seriously. It’s ok to ask for help or call in pizza. Or mostly what I do is just announce very loudly I am not cooking and everyone fends for themselves (ok, I help the three-year-old). But you get the idea.
I am going to make more of an effort to be a better friend and reconnect. So, if you’re my friend. Sorry. You know life moves fast and it’s easy to let months become a year. I will strive to take the trip with you and be the friend who remembers birthdays and anniversaries! Not just to wish you a ‘happy birthday’ via text but to actually wish you a happy birthday by sending a thoughtful, meaningful gift that would make someone on the other end smile when they open it (btw, I actually have this friend, they do exist!). Personally, I know how great this feels because when I had my own medical crisis, I had no shortage of cards and amazing gifts sent my way. It helps. To actually show I care. So, there’s that.
Honestly, I just reflect on ‘offering it up’ in a way that on the other side of my suffering is growth and bound to be happiness. That there will always be peaks and valleys. I know, because I was in one of those deep, deep valleys. I honestly didn’t know if I could get out, but I did. In more ways than one it changed my life. It made me realize I needed to quit a lot of my bullshit behavior. I just didn’t have room for it anymore. Which was basically not being able to control my alcohol intake and food issues. I mean, I’m sure I have a lot more bullshit behavior than just that, but these seemed to be the ones making me crumble as I tried to find balance post-cancer.
Also, this all does not come easily or naturally to me. It has taken a lot of work over the last year to decide I’m going to be happy and turn the last few years of a literal shit show into something positive that I can spin my way.
I do not always know which path I will take, but I am confident that it comes with speaking up and just taking one step forward at a time. Offering it up knowing that what feels like it’s crumbling today will often be built back better tomorrow.
I’ve been thinking lately about how all of our cancer experiences are so different. I mean that based on our access to care and information, to surgeons who will agree to operate etc. I read just the other day a fellow CRC friend comment she found a surgeon who was willing to operate on her stage IV colon cancer through a support group.
That’s so important! There are so many clinical trials and advances in treatment that it can be overwhelming to know where to look and how to search etc. I’m going to pool just a few resources that I know of that are great for finding clinical trials and colorectal cancer support groups. This is a short list, but these are a few that are useful if you are starting out or don’t know where to look:
Mybluem.org is an organization I am an ambassador for! It’s a community created for patients by patients and here, once you register, you’ll find a wealth of information including some really neat things like a whole section on podcasts, ostomy support, sexual health. So many great things that impact us as early onset survivors. Check them out!
Fight CRC is such a great group that has a wealth of information on clinical trials, support groups, and even a whole resource library based on your stage of cancer. If you or a loved one has colorectal cancer this organization is a great resource!
If you are specifically receiving treamtnet at MD Anderson Cancer Center, they have a lot of support groups I did not even know existed, and I received treatment there!
clinicaltrials.gov – I have no experience with this platform myself, other than hearing some advanced CRC friends mention it as a resource. Definitely something to check out if you are looking for clinical trials.
There is also a whole community of early onset CRC patients and survivors I’ve gotten to know well through Instagram! It’s been wonderful, therapuetic, healing (sometimes heartbreaking) to form so many wonderful friendships through such an awful experience. Come find us! We are surviving this disease and leading fulfilling lives!