Badass Tips for Surviving Colorectal Cancer Treatment — Part 2
12 Tips for After You Are Diagnosed with CRC
Series Overview
It seems lately the number of people I’ve talked to about CRC treatment has grown — as has the number of people I’ve encountered who are being diagnosed. 😔 In addition to those one-off conversations or social media discussions (@ccndoc) where I often share thoughts about what worked for me during treatment or what I experienced, I decided that putting this information into a series of blog posts would be a great way to share the same knowledge with more people. A series, because not everyone goes through the exact same treatment plan. This way you can pick and choose what parts apply to you. Series posts will not be published in succession — other posts may come in between, because to be completely honest, dredging some of this stuff back up comes with a bit of PTSD or as the OUHSC CCAN Child Trauma Services puts it: “It’s like a shaken soda bottle — Opening a shaken soda bottle can be compared to the way memories of trauma are discussed. If the lid is twisted off too quickly, the soda will go everywhere, but if the lid is unscrewed slowly and in a controlled way, the soda can be opened without exploding.”
If you know someone newly diagnosed or going through treatment now, please share this post with them!
Part of my mission to give back to the CRC community is to be available to help 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. In addition to this series, please don’t hesitate to reach out via message or social media, anytime!
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 and feel free to ask questions because everyone’s body is different, each person reacts to treatment differently, and everyone does cancer their own way!
12 Tips for After You Are Diagnosed with CRC
The following is a list of the tips covered in this article. Feel free to scroll to those you want to see (unfortunately, Medium does grant the ability to jump to each).
- Tip 1 — Choosing Your Healthcare System — Hospital, Cancer Center, Etc.
- Tip 2 — Build a Great Healthcare Team You Trust
- Tip 3 — Be Your Own Advocate & Use Your Voice
- Tip 4 — It’s OK If You Need To Change Doctors
- Tip 5 — There are No Stupid Questions — Ask Them All!
- Tip 6 — Start a BIG Notebook — Or two, or three!
- Tip 7 — Do NOT Doomscroll!
- Tip 8 — Let Go of Perfection!
- Tip 9 — Find a Support Group!
- Tip 10 — Investigate and Integrate Complementary/Integrated/Holistic Medicine & Techniques
- Tip 11 — Treat Yourself to Headphones
- Tip 12 — Keeping People Informed — To Tell Or Not To Tell?
Tip 1— Choosing Your Healthcare System — Hospital, Cancer Center, Etc.
Sometimes you have a choice of the healthcare system you are in, and sometimes you don’t. After consideration and research, I chose to stay in my smaller local healthcare system for treatment, and I’m glad I did. Even though I had offers (from former clients) to help me get into some of the most renowned cancer centers in the country. My local team was a combination of Mayo-trained (my badass female surgeon, #TheShettyShow), CRC specialized, and MD Anderson Certified doctors; and the majority of nurses and other practitioners I encountered were top-notch! I also had access to cutting-edge technology and the newest protocols as a part of my treatment. I was fortunate to be in very good hands!
Don’t Listen to Small Town Bias
In choosing local, I was in an interesting situation. The smallish town (just over 110k people) where I had my treatment, is one that I love, and yet it does not have a stellar reputation throughout the state, in general. But having lived there previously and for a number of years, we had a much more positive opinion. We also had worked with the local healthcare community there in our capacity as executive coaches and leadership development professionals so we had a unique perspective. Thus, the bias others have of “too small to have good healthcare” often comes not from actual experience in most cases but from historical and social biases, most of which are separate from the medical community — The town is a blue-collar-leaning old steel mill town with a family focus, a higher crime rate, and a small private hospital system (until recently — they are now merging with a larger system, which potentially means even more access and quality care). Thus, the biases are unfortunate because great local care is possible there, but can often be dismissed!
Before making assumptions about your local options, do your homework and look beyond confirmation bias. I have lived in the nearby bigger, and purportedly “better” cities, and for many reasons (including healthcare), I prefer the smaller ones! I believe anyone can have a good experience somewhere or a bad one — Both can happen whether the system is big, or small. To this point, I live closest to an even smaller town than the one I received treatment in, and those same biases exist because it is a “small town”. Yet, I just had my annual colonoscopy performed by yet another Mayo-trained surgeon specializing in colorectal surgeries, at an award-winning hospital in that small town. You just never know! 😉
Ask yourself these questions:
- Where will you feel MOST comfortable? (Traveling outside your local area even a few hours can be taxing, and moving or commuting by plane for treatment also brings challenges and disruptions.)
- Who needs to be involved in the decision? (Even if at the end of the day it is your decision.)
- What factors are most important to you? (Quality care, reputation, equipment, treatment plan, travel distance, convenience, finances, access, in-network coverage, etc.)
Tip 2— Build A Great Healthcare Team You Trust!
Yes, you get a say! Things move fast once you are diagnosed, but there’s time to do a little homework.
Because there are so many variables, my first tip is that it’s SO important to surround yourself with people and a medical team you trust, and who value and participate in good continuity of care! A team of people who listen and respond to you and your needs! If you don’t feel like you have that, make the changes necessary so that you do!
What does my healthcare team look like?
- My Care Partner was my spouse Amy a.k.a. “Doc.”
Ask someone in your world to help you through this and to be your support system, chef, sounding board, advocate, chauffeur, chemo/radiation buddy, looker-upper for medical terms you don’t understand, and overall cheerleader Give yourself the gift and ask for help! We had no idea what we were in for, and Doc stepped up to the plate in ways I never imagined. Not all spouses and partners are cut out for this role, so it’s ok if your choice is a friend, sibling or even a parent. We created a podcast to help Caregivers and here is a Playlist of Caregiver Meditations. - A radiological oncologist
- A medical oncologist
- A tumor board (you will not meet them or be able to choose them)
- A surgeon
- A gastroenterologist
- A physical therapist (extremely important especially if you’ve had surgery)
- A variety of nurses, np’s, pa’s, radiologists and techs along the way
- Advocates! Advocacy organizations like Fight CRC and Colorectal Cancer Alliance have an abundance of resources available for the newly diagnosed as well as long-term survivors! They’ve got your back!
Most people I know have had experiences ranging from awesome to mediocre and one or two have experienced a lack of confidence in their team or felt discriminated against (or unseen) for one reason or another. Don’t ever let anyone make you feel like you aren’t worthy, or that you don’t have the means or the “right” to ask for what you need during your treatment. Do try to always be respectful and appreciative during the process as it goes a long way to getting your needs met.
I am lucky in that my experience was overwhelmingly positive! I only had a few mostly minor occasions (in a year and a half) where I was not as comfortable, and most were due to Covid safety precautions and could have happened anywhere. This was my experience:
Once while in the hospital post-surgery, I had to ask a CNA (certified nurse assistant) to put a mask on at my bedside (they were practically face to face with me taking vitals) as I was in the hospital during a Covid surge and it was hospital protocol — I also had a lower WBC (white blood cell) count and was on a cancer floor, where protocols were stricter and I couldn’t easily be masked as a patient.
Once at the cancer center, during a time when I was neutropenic (extremely low white blood cell count, which means you have very little immunity), a PA (physicians assistant), whom I had not seen before, came into the exam room, took their mask off, and suggested I remove mine as well. This was also during Covid when the clinic had clear rules that both staff and patients be masked. It was my preference to stay masked and I asked them to do the same. They made a few excuses but finally put the mask back on. I later shared the experience with my oncologist who agreed this shouldn’t have happened and said it was ok for me to ask them to wear the mask — But, I shouldn’t have had to ask. I asked in the future to not see that PA and instead meet with my oncologist in the future. He was very agreeable and that’s how it continues today.
SIDENOTE: I was surprised to find out that some people don’t have a meeting with their Doctor/PA/NP before every chemo round. I don’t know if my clinic worked differently, but I certainly wouldn’t have been comfortable otherwise since chemo dosages are adjusted by the Doctor and based on side effects. You CAN ask to see the doctor each time!
Another example was a similar situation with a MA (medical assistant) who always wore their mask under their nose. MA’s get very close to take vitals and blood pressure. I asked them to put the mask all the way on. (This happened on more than one occasion.) Sometimes you can tell when someone is rolling their eyes without rolling their eyes, but honestly, Doc and I looked at these requests as: 1) Life-saving requests being that my immunity was compromised during treatment, and 2) Part of my patient rights (all providers should provide you with a Patient’s Bill of Rights).
Finally, during my gastrografin enema, an event which no one wants to take part in, the tech began the procedure— which includes pumping liquid contrast through a tube up your butt — before the radiologist was in the room! 😬 Keeping in mind my butt hadn’t been used for several months at this point as it was during the post-surgery #1 ileostomy phase. This meant that I was in the uncomfortable position of half holding, and half violently ejecting liquid out of my butt, soaking the table beneath me while the tech apologized profusely because the radiologist told her to start because he “would be right there”. What felt like hours later (more likely 10 minutes), he nonchalantly arrived like we were meeting for lunch on the 9th green! 🙄 My blame on this one goes to the radiologist, and you can and should fill out that follow-up survey from your hospital in these situations. Not gonna lie, it’s right up there on the top 3 things I never want to do again in my life!
When negative experiences occur, in my mind you have two options: Be your own advocate or change doctors…
Tip 3 — Be Your Own Advocate & Use Your Voice!
Only YOU are experiencing cancer right now in this way! Whereas it may be just an average Tuesday for your doctor, it’s life and death for you!
Talk to your team and share with them your expectations and concerns. I always say that “Unspoken expectations are pre-determined resentments.” Another option is to choose one person on your team who can advocate for you with the others. Push if you have to and make them listen. Often you can come to a working understanding.
Let’s be real — not all medical professionals would win a congeniality award, but it doesn’t make them bad practitioners. They don’t teach bedside manners in medical school. Many of these brilliant minds just don’t connect in the same way that we do. In fact, some really great doctors are just not great with patient social and emotional interaction. It doesn’t mean that you can’t ask to get your needs met, however. You are going to be in each other’s lives for a long time, you need to be able to communicate openly and honestly and know you are being heard! If you can’t be your own advocate find someone who can advocate for you like a spouse, partner, friend, family member or social worker.
Tip 4 — It’s OK If You Need to Change Doctors
I know now that I was lucky to have such a great and dedicated team and to have pretty good continuity of care. I think that being in a smaller healthcare “system” went a long way for me not feeling like just another number and having what I felt was a personalized care experience much of the time. We formed relationships with my doctors. I realize that is not everyone’s experience.
For example, I recently encouraged a friend (a young woman of color) to find a new oncology clinic — in fact, I recommended mine — because she wasn’t feeling seen or heard by her current clinic. Whether it was her age, diversity, the fact that she was the care provider to her very young child who had to go to appointments with her, or that she was not currently a cancer patient (but rather being closely monitored due to family history and previous scares), or simply that it was a disconnect of personalities, I don’t know that she realized that she was “allowed” to make a change. She is now with the new practice and I hope her experience is very different!
Sometimes the idea of changing practitioners can be daunting, complicated, and tiring because of insurance, transfer of medical records, fear, and hoops the medical world makes you jump through. Plus, you’ve got a lot on your mind! In the end, it’s your life, your health, and your care and it can be well worth it to make the change. The last thing you need is to be worried about your care or treatment plan!
How Do you find a new doctor/practitioner?
Ask people you know or who have gone through this process who they are working with and why they prefer their doctors/team? Keeping in mind that some personalities click while others do not. If you’re close to another practitioner, perhaps an oncology nurse in your clinic, ask who they would choose to see and why.
Word-of-mouth referrals are valuable, but you can also check reviews online. In Google reviews, always be wary of the super negative and super positive reviews and balance those with reading the middle-of-the-road ones. Every doctor is bound to have pissed someone off at some point and some reviews can even be fake. Try other places like your insurance provider app or website, Healthgrades, and US News for reliable reviews.
In my case, one of my doctors came highly recommended (had good reviews) and the person who recommended them is a similar personality type to the doctor. In my case, I didn’t always connect with that doctor from a personality perspective, but I continued to work with them because I believe them to be highly skilled in their field and I believe they have my health and well-being at top of mind — even if they don’t always communicate that in the same way I would.
I now have a rapport with this doctor that I would describe as more arranged marriage than love at first sight, but that’s ok as long as they are working as hard as I am to keep me alive! At first, it did require some advocating, even pushing on our part to teach this doctor our needs & style. It was also important we learn their style for ideal communication and to get our needs met. I do sometimes have to make sure I have their full attention (it’s my 30 minutes) or that they are hearing what I am telling them and processing what it means, to me. I also notice things like they are much more connected and in tune with me after a vacation — these doctors are so busy — I’m sure it’s hard for all of us patients not to blend together for them after a while. Plus, these practitioners also experience a lot of loss in their field, so it makes sense they may protect themselves by keeping patients at arm's length. The bottom line for me is that I believe we’re all on the same page now. I still have great respect and admiration for the healthcare community and this doctor!
REMEMBER: It’s always OK to ask more questions, be heard and share what you need.
Diversity Matters
Because I am part of the LGBTQ+ community I did ask questions up front when investigating my team options. I was fortunate to be in touch with quite a few people in the healthcare system I would be in and I asked a lot of people for their recommendations and suggestions for who I should work with. I also asked if they were gay-friendly or at least not anti-gay or homophobic. Doc and I are a package deal so it was important for us and them to understand that she would be in the room and a part of every decision. Thankfully we were blessed in that our “gayness” seemed to be a non-issue. In fact, one of my doctors commented on how well we communicated and supported one another, and how well Doc advocated for me in a particular instance.
If our being a lesbian couple was an issue, we didn’t feel it. Maybe it has something to do with the fact that as a couple, Doc and I have always operated as if we would be treated the same regardless of the L-Word. We always have the assumption that our relationship and the kindness we put forward speaks for itself and is reciprocated. However, we know others who have experienced discrimination in the healthcare system for a variety of reasons including being LGBTQ+, overweight, persons of color, age, socioeconomic status, etc. It happens. Healthcare heroes are still human and we all can have biases. Fight CRC published this video (starring us) during pride month this year to discuss this very topic.
Diversity UPDATE 2024: Practices Are Evolving!
A few months back at my last checkup with my oncologist, he shared with us that after attending a conference that he had a whole new and different perspective on treating LGBTQ+ patients, and as a result he would be incorporating much of what he had learned into the practice’s approach to patient care. Including identifying LGBTQ+ patients sooner (though this in itself can be stressful for patients for fear of being then singled out for discrimination — and we shared that it would have to be done well and carefully), and making sure to acknowledge them and their unique challenges. This versus just being OK with LGBTQ patients, but never bringing it up as a part of the discussion — which was the case with he and us. He was very accepting of us as a couple but never thought to include it as a part of our conversations in case we had specific needs. THIS BTW WAS A BIG DEAL FOR ME WITH PHYSICAL THERAPY BECAUSE MY NEEDS WERE DIFFERENT THAN A STRAIGHT MARRIED GIRL.
As the practice manager, he also said he was committed to making space for LGBTQ+ patients to share their concerns. We had a very rich discussion about how this could work and what some of the unique challenges are for LGBQT+ patients with Colorectal Cancer — and especially trans patients who may not have anyone else to turn to as a support system. We applauded his efforts and I have to say I have a whole new level of respect for him as my oncologist. I’m proud to be his patient and I know that if I had any concerns, I could and would certainly be able to address them directly.
Once again, being your own advocate is important! So is paying attention to your intuition and asking questions…
Tip 5— There Are No Stupid Questions — Ask Them All!
Making sense of all of the information thrown at you after you’ve been diagnosed is like drinking through a fire hose! It’s important however that you put a filter on that hose and funnel that information through to your brain! Especially before chemo and chemo brain hit you! KNK 😂 If you don’t have a knack for medical jargon you can either learn, use Dr. Google, or ask someone else to help you.
My docs were always prepared for my questions. I have to say they were all very accommodating even though once in a while they were probably like, “Oh no we have CC, the questioner on the schedule today!” It’s ok to take the time to get all of your questions answered. My surgeon told me she was glad I asked so many questions! Can you guess which doc is my favorite!?! 😉
My philosophy is, “This is my life” and I was trying to; 1) Make sense of a diagnosis that took everyone by surprise and 2) I wanted to do my part to aid in my own healing.
Don’t feel pressured by time even though the healthcare system is designed to make you feel that way. Most docs have time built into their schedules for patients who take a little longer!
Awkward Conversations!
Let’s also talk about awkward conversations. During and after treatment, things will come up that you will need to discuss with your team. Let me be clear, you SHOULD discuss them with your team. Be brave and be prepared to enter into the world of the uncomfortable. In my case, those conversations include(d) topics such as poop, would I smell?, farting in public, energy/stamina, vaginal dysfunction (which can also mean sexual dysfunction), bladder dysfunction, etc. At this point, nothing is too taboo for me to talk about with my doctors, or with you! Besides, I’ve had more anal exams and things shoved up my butt in the last year and a half than I care to think about, so there is very little modesty left for me!
You will also find that some doctors prefer to stay in their lane, especially when it comes to the awkward stuff. For instance, I save poop conversations for my surgeon or GI (Gastroenterologist); and hooha conversations for my PT, not my oncologist. 😂
Tip 6— Start a BIG Notebook — Or Two, Or Three!
I started a BIG notebook as soon as I was diagnosed, and before every appointment, I would sit and write down questions I had for my doctors. During my appointments, I (or my care partner) would take notes on the responses. Believe me, it’s helpful to have those notes later on because there is NO WAY to keep all of that information straight in your head! If your practitioner will allow it, you can also video or audio tape conversations.
I have three notebooks!
One for all the Medical stuff, which I put away behind a closet door before each appointment so I don’t have to see it; I have a journal where I keep notes about everyday stuff as well as my personal and spiritual journey, and it includes a growing list of things I’m grateful for. I have a third smaller purse-sized one just for affirmations that I re-read, recite or meditate with on a regular basis.
Make your journal(s) beautiful, fun and inspiring! Mine have stickers all over them to represent me and my journey.
Tip 7— DO NOT Doomscroll!!!
I did more of this than I’d like to admit — more because I was trying to do cancer perfectly, not because I really wanted to know mortality stats for rectal cancer (you don’t either). And that’s why I’m telling you not to do it! More information is NOT always better!
I started out not wanting to delve too deep into stats or side effects and then I would start to see them in my peripheral vision as I was reading up on something or trying to find a way to help heal my body (my part in all this) and the next thing you know, morbid curiosity snuck up on my and BAM! I was in the vortex! 🌪️
Find out enough information to help your situation, for example, if you have a rare side effect that you’re not seeing on the list and wondering what to do about it, but don’t stare! Rue Paul recently posted the best advice about watching what’s happening in the world today and it applies to cancer also: “Look, but don’t stare.” Translation: Be informed, but not paralyzed by information.
ALWAYS REMEMBER: Your diagnosis is not your prognosis! Those stats are sometimes a decade old! Someone has to be the new and improved statistics! Why not you?
Tip 8— Let Go of Perfection!
Let’s just get this out of the way. There is no F-ing way on the planet that you are going to do cancer perfectly! I tried so hard to do it all “right” and created a lot of undo stress in the process. Stress also causes cancer, so just cut that shit out!
You Do You!
That’s perfect enough. Honor your body, Listen to it and honor your intuition about it, keep your mind occupied on thinking positively, believing in miracles (yes, even against all odds — you seriously never know) and maintaining good mental health. If you have deep emotional shit to work on, do it! If you have dreams you want to start working toward, do that too, within the confines of amount of energy you have. Above all, grant yourself grace!
Tip 9— Find a Support Group!
I was so lucky to find a small, positive facebook group for support! Aside from the obvious moral support, I also found in this group a sounding board for what I was told were “unusual” and “not common” side effects that might have been dismissed (by me or medical professionals) if I hadn’t had people in the group tell me it was actually more “normal” and “common” than even the doctors realize. I learned from them to never ignore anything and to report everything to your medical team! This went a long way in my discussions with my doctors and I was able to share how many others in my groups had experienced the same symptoms, lending credibility to my concerns.
Further, sometimes a support group gives your caregiver a break! It allows you to share fears and concerns, and have discussions with those who are walking in your shoes. No matter how fan-freaking-tastic your care partner is, unless they have had cancer, they can’t completely understand how you feel and sometimes they need a minute to re-group themselves. In fact, they should find a support group, too!
You may want to join a few groups and that’s fine, but if you ever start to get too much of a negative vibe or if you find yourself feeling all kinds of freaked out after scrolling, take a break or change groups. As we know, not all groups are healthy and you are looking for upliftment and sound advice from people who have been there and walked in your shoes!
Tip 10— Investigate and Integrate Complementary/Integrative/Holistic Medicine & Techniques
Those three words (complementary, integrative and holistic) are often used interchangeably. As I have said in the past I am a believer in the mind-body connection to illness and dis-ease. Therefore, it makes sense to me that I can also help heal my body with that same connection. For instance, it is proven that people who meditate during treatment have better outcomes.
Because of this and because of the staging and the size of “Arnold the tumor”, I knew that for me, I needed traditional medical intervention, for which I would trust my medical team, I also believed I could and wanted to be a part of my own healing process, and I knew I needed other more holistic healing methods as well.
Thus, In order to take charge of my own healing I employed a number of methods, alternative practitioners, and practices to contribute to my healing. The following are some options to consider from simple to more complex as well as free to paid. You can add these to a traditional medical approach ( called integrative or complementary medicine) and yes, some people choose to use them in place of modern medicine. Everyone does cancer differently and no one but the patient has the right to make those choices. For me, I found holistic healing by combining modern with ancient and even woo-woo medicine:
- Insight Timer — A FREE APP that is chock full of meditations, affirmations, visualizations, and courses (paid version) on every topic you can imagine to help you on your healing journey! Find it on your mobile device app store.
- Solfeggio Tones/Frequencies — are a set of at least 10 electromagnetic musical tones that are said to raise vibration (everything is energy including you) and to help heal, soothe, and raise your vibration. 528 Hz is the most popular for healing and is believed to facilitate DNA repair. Simply ask Alexa or Siri (or Apple Music or Spotify) to play Solfeggio tones for you OR ask for the specific tone you want. Better Yet, HERE IS A PLAYLIST of my favorites!
- Binaural Beats (headphones required) — According to Oura, “Binaural beats are an auditory illusion created by playing different tones in different frequencies in each ear… There’s ample evidence to suggest that binaural beats may help with sleep… alleviate anxiety… and boost focus and concentration.” among other things. HERE IS A PLAYLIST of my favorites.
- Affirmations — I am such a believer in affirmations! Your subconscious mind hears these even when you are doing other things. Make list of positive and healing affirmations for yourself for daily reading. You can get yours from meditations or reading or you can create your own based on what you want to manifest. Always use affirmative language like, “I AM” (not, I will or I want to)! One of my favorites to recite all the time is: “I AM safe, I AM well, I AM strong.” And I love many of the ones found in Louise Hay’s books!
- Inspirational Reading, Viewing & Podcasts — There are so many! Whether you are religious, spiritual, new age or metaphysical in your beliefs, inspirational reading can be uplifting and healing during the cancer journey! These are just a few suggestions:
-Anita Moorjani — Dying to Be Me — The first book I read post-diagnosis. Anita was a stage 4 cancer patient with mets who had a near-death experience (NDE) and came back healed. Today she shares her experience and wisdom of the other side.
-Louise Hay — Wrote a book called Heal Your Body discussing the mind-body connection to illness. In her book are affirmations to address any number of illnesses — I added the one’s for cancer to my daily affirmations.
-Gary Holz — Secrets of Aboriginal Healing — A Physicists Journey with a Remote Aboriginal Tribe — This book was profound and powerful to in part because it taught me that I must truly believe I was worthy of healing.
-Heal — A Documentary — We found it on Amazon Prime. A fascinating documentary about various methods of healing and the mind/body connection to healing.
-Joel Osteen Podcast — While I am not an evangelical and embrace more spirituality than Christianism, I found some of his podcasts to be motivational, uplifting and positive. If you are a Christian, I recommend it and if not, you can still take something from the positivity of the message. I did find that I had to take what I wanted and leave the rest during some sermons. Chalk it up to a difference in belief but not philosophy — I agreed with the positivity of the message, the fact that I deserved health and wellness (i.e., I was not being punished), and I personally believed in the divine healing energy within me that comes from a higher power.
-We began our own podcast, CCnDoc Talk where we occasionally discuss the topic of cancer, but also many other things related to healing and spirituality. - Meditation & Guided Visualizations on Healing — Insight Timer has plenty of these but I also have a playlist I created on Apple Music so that I could listen to specific healing meditations (many on curing cancer) all night long. See TIP 11 about headphones. HERE IS A PLAYLIST of my favorites!
- Healing arts Such as Reiki and Acupuncture — Many people swear by acupuncture during and after treatment! I have had acupuncture in the past but did not do so during treatment. I looked into it, but I live in a remote area where there was only one practitioner whom I didn’t quite connect with. Many insurances will now cover acupuncture (check with your oncologist to make sure it’s ok with your treatment). As to Reiki, I work/ed with a Reiki Master from the start and continue to do so! Doc and I started doing work with her together (as a couple) toward the end of cancer treatment up to today. Uniquely, because of Covid, our work with her has been almost exclusively by Zoom. Know that a good Reiki practitioner does not have to be hands-on to do great work! The guided journeys we have been on together have been quite amazing and life-changing!
- Consider A Therapist or Coach — I don’t know about you, but I sure realized fast that I had some things to work on in myself to be the best person I could be in order to navigate the roller coaster of treatment more positively and come to terms with a cancer diagnosis. For example, if you’ve read my backstory, you know that I recognized early on that I had been taking on the pain and anger of the world by being an empath and not protecting myself properly. I also knew that if and when I was cured that I wanted to be a much better version of myself and not waste the second chance I was given. For me, this required therapy. There are many types of therapy and therapists! I suggest not just sticking to traditional methods (although those are also effective), but I also explored lesser-known techniques like Coherence Therapy and Time Line Therapy. There are virtual options and apps for therapy these days. I give the same advice about therapists and coaches as I do doctors. If you begin working with someone and it later doesn’t work out, find a new one but do not get discouraged! If you can’t afford a therapist, check with the social worker at your cancer center, they can provide you with free community options! The advocacy groups I mentioned earlier also have resources.
Sidenote: Most people ask me if my healing medium believes in God. “Yes! And, she would also say that your belief in God is not required for you to receive healing. All are worthy of healing.” - Consult a faith-based healer, healing medium or clergy — There is nothing more powerful than utilizing your faith (whatever it may be) or spirituality to improve your health, attitude toward dis-ease, and your connection with your spirit and the divine. Seek out groups within your church or clergy themselves that you can have regular conversations with in order to improve your mindset and ultimately your health. Many pastors offer counseling. If you are spiritual but not religious, there are so many other options to consider! Seek them out!
There are also religious faith-based healers as well as spiritual healers and healing mediums. Starting a month after diagnosis, I personally worked with a Spiritualist Healing Medium from the Netherlands (I still do), and I believe her work with me was a huge part of the reason why I am in remission today. Further, this experience opened up a whole new world for me personally and spiritually, leading me in a direction I never envisioned. I’m excited to see where it leads!
Sidenote: Most people ask me if my healing medium believes in God. “Yes! And, she would also say that your belief in God is not required for you to receive healing. All are worthy of healing.”
As with all of my advice today, if you don’t at first receive a positive and uplifting message that helps you through, choose a different person/option that will help you on your journey of hope and healing. - Ask friends and Family to pray, send good vibes, thoughts, juju, and energy and to visualize you well and thriving into a long future! — I can’t tell you how many people I’ve encountered with cancer who choose not to tell people they have cancer. While I understand this approach and believe, “to each their own,” I also believe in the power of collective consciousness! It has been proven that the power of prayer, group-think, and collective consciousness can affect healing. I honestly believe that we had so many people in our lives sending good thoughts, healing energy, and prayers that the collective messaging was another part of my miracle of healing.
Early on, I asked those close to me to keep visualizing me happy and healthy sharing a conversation or glass of wine with them many years into the future. (I started at 40 years and have since increased it to 50 years! 😉 That’s only 105!) I am so grateful for these good thoughts and I have always said that my miracle was also theirs because they helped to make it happen with the power of their faith and thoughts.
It takes a village to cure cancer!
- Consult a Naturopath who specializes in oncology and complementary medicine — Some people prefer to go a more natural route to healing. In the case of naturopaths, there are those who lean toward only natural healing methods without the aid of modern medicine (chemo for instance); and there is another type of naturopath that is trained in Naturopathy and Oncology so as to be proponents and advocates for an integrative approach of holistic + natural medicines + modern medicine. For instance, there are naturopathic approaches that can lessen the side effects of chemotherapy such as IV therapy. As I understand it, some ND’s (Doctors of Naturopathy) will also collaborate with your oncologist, if both are willing, to provide more continuity of care. The downside is that Naturopaths are not always covered by insurance.
- Consult a doctor who is a supplement expert and understands oncology — In lieu of a naturopath, you can consult a doctor such as a D.O. Doctor of Osteopathy — like an M.D. (allopathic) but more holistic. D.O.’s are covered by insurance. When I couldn’t get in to see the naturopath I wanted to see before chemo (she was booked several months out), this was the route I chose. I had a doctor in Denver (where I used to live) who was well-versed in my health history, women’s health and hormones, and supplements. I specifically went to her to discuss what my options were for supplementation during certain parts of my treatment plan, so that I could potentially lessen side effects and improve my outcomes. Ideally when you can, get doctors to communicate with one another. In the absence of that, be sure to loop your oncologist in on your supplement plan and let them weigh in — there is not always agreement in this area. Studies are often what doctors go by and yet studies can be contradicting and sometimes hard to find. It seemed like in everything I researched, I could find a study for and a study against whatever the topic was — it was a bit maddening — which can make it hard to know what to do. (Back to my No Doomscrolling tip! 😂 )
TIP 11— Treat Yourself to Headphones!
I feel like this was one of the greatest gifts I gave myself during treatment! If you can’t afford them, maybe one of your supporters would kindly purchase them for you (I have recently seen people create “cancer wish lists” or gift lists.) So many people want to help and contribute to your healing and buy you gifts to show their support, but they don’t always know what to buy! BTW, getting comfortable with accepting these gifts was a tough one for me and is a whole other blog article!
I highly recommend buying yourself TWO sets of Bluetooth headphones for your journey! One for day and one for bedtime and the chemo infusion center! So many of these suggestions (like binaural beats and affirmations) work best with headphones on! Plus, my favorite one’s have some great features:
- If you only invest in ONE headset, make it Musicozy Sleep Headphones! They are also very reasonably priced. This headset is designed like a sleep mask (doubles as a thick headband) for sleep, meditation, chemo and hospital stays! They are comfortable enough to sleep in even for most side sleepers — I tend to move them in front of my ears for sleep so they operate more like bone-conducting headphones. I can’t live without mine! They were super helpful during infusion because as an empath it allowed me to keep out the negative vibes since not everyone going through chemo is in a great mood. I could pull them down over my eyes, rest and move into the world of healing vibes whenever I wanted. These helped me in the hospital after surgery by eliminating the distraction and noise of a hospital room and helping me to sleep, stay relaxed and heal. It’s also a great gift idea for others. GET THEM HERE!
- Next are my “Daytime Headphones”: Aeropex Aftershockz/Open Fit — I like these for the opposite reason of the others. Because they are bone-conducting” headphones (headphones that sit in front of the ear and conduct sound through your bones while leaving your ears open and clear); these allow me to fully engage with others in conversation, hear a car approaching if walking, but still have my affirmations, solfeggio tones or binaural beats playing at a low volume in my ears all day long with no one the wiser. Plus they work for everything else you would normally use headphones for. Unfortunately, these are not good for lying down situations because of the way they wrap around the back of the neck, but that’s what the other set is for! GET THEM HERE!
TIP 12— Keeping People Informed — To Tell or Not To Tell?
I didn’t tell people right away. We took time digesting the news first, and then a couple of weeks later we sent an email to friends and family. It wasn’t until a few months in, during my second round of chemo (after radiation), that I came out publically with my story. At that point, I decided that there was just too much stigma surrounding colorectal cancers and that so many more people could remain healthy if they weren’t afraid of a little colonoscopy. I felt like if I could use my voice and help even a few people avoid this diagnosis in their futures it would be worth it. Looking back I know my timing was right for me. I also think had I felt better (radiation was tough on me) I probably would have gone public sooner, but I also needed to be 100% focused on my healing above all else! In writing this article, I went back today and watched some of my original unpublished videos where I was sharing the news, and I can see how they would have had an impact because of how raw it all was. Maybe I’ll publish them someday. Of course, not everyone is willing to air their dirty undies on social media and THAT’s OK!
The Case For Telling
I highly recommend telling your friends and family of your situation. (Work peeps also if you feel safe doing so.) They love you and want you to be supported. Going through cancer with no support is unimaginable to me. I can honestly say I don’t know that I would have had the same outcome because I believe so very strongly that the collective consciousness of others helped make me well.
For that reason, keeping people, friends, family and co-workers informed is so very important and yet can also be exhausting! Between your treatment and your caregiver being pulled in so many directions, it’s great to have ONE PLACE where people can go for information and updates.
Some people start blogs (I opted to create this one after treatment for a more public audience), and others create group chat’s, facebook pages or email lists. These are all good options and I say choose the one that is the easiest for you and your care partner to maintain! We found by far the easiest, most user-friendly and FREE tool is Caring Bridge!
It’s a wonderful free tool that allows you to create a simple website/blog for you or your loved one and it does much of the setup work for you. For instance, you can decide how private your site will be, and you can easily include photos and videos of your journey! And, it works on desktop and mobile devices. I can’t say enough good things about Caring Bridge and what they do for families by offering this service. I do suggest donating if you are using the service, but it is not a requirement, which is why it is so awesome!
We used Caring Bridge to capture my entire journey and I still keep it updated for the big events. You can see my entire journey before starting this blog HERE. Doc and I traded off writing posts depending on how I was feeling. You can also designate family members to write posts for you. It’s about as simple as technology gets and they have awesome support!
FINAL THOUGHTS: In terms of these tips and suggestions, you can be a skeptic or you can think, “I’m not sure, but If it can’t hurt me, then OK!”! Even if you don’t necessarily believe in something you can always try it and see how it goes. My two suggestions for that approach are: 1) Try a thing more than once and for a decent period of time before deciding (a month is a good start), and 2) Go into it with an open mind. Skepticism often leads to confirmation bias (if you think it won’t work, it won’t work.) I’m sure some folks thought some of the things I tried might be a “placebo.” Though they never said so and were always outwardly supportive. Have you seen studies on placebos? They work quite well in many circumstances! Our minds and bodies are more powerful than we give them credit for! There is almost always a better outcome when we believe in something.
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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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