Tips I Learned During Anal Cancer Treatment
As you might have seen when I announced that I had anal cancer back in July, I've been very vocal about what treatment looked like and what post-cancer life looks like for me.
I have shared my story on social media as well, and with that I have received many messages from people I know, telling me my advice has been helpful. I have also talked with people I didn't know who were reaching out to ask for tips during cancer treatments because they or someone they loved was going to go through anal cancer treatment—and they just wanted to talk. I have even had a woman reach out because, apparently, my blog now comes up pretty high under the search term “anal cancer treatment.” So who am I to deny this underutilized SEO term? (lol)
Finding Out You Have Anal Cancer Is Scary
Especially when your doctors start telling you what treatment looks like —- radiation, chemo, dilators, creams, medicine, etc. (read more about how I found out I had anal cancer). It was a whirlwind of information, and it all happened so quickly that I didn't really have a lot of time to process what was going to happen to me during anal cancer treatments. It really wasn't until after my radiation burns on my pelvis started to heal and my energy levels started to increase (which occurred a month or two after my last day of treatment) that I could begin to internalize the fact that my life post-treatment is different.
What has helped me is being able to provide some tips I have learned over the past few months and giving advice to anyone who's willing to listen.
Anal Cancer Treatment Advice:
I have copied and pasted this advice to three different women, so I figured it would be important to share here as well. Before reading, please know that this is advice from my experience of going through intense radiation, along with less intense chemo pills for 30 days, and being bedridden.
Everyone’s treatment schedule is different, and so my best advice to you is to ask your doctors as MANY QUESTIONS AS POSSIBLE and work with them on a good plan for your needs.
The week before and three weeks after my final day of anal cancer treatments, I was bedridden because of the pain from the radiation burns. I didn't want to move at all. Thankfully, because my body was exhausted, and with the medication, I slept through most of it—aside from getting up to use the bathroom (which was the worst part of my day). That month I just drank protein shakes for sustenance because "real food" made my bowel movements even more painful.
Get a day planner or notebook to write down the TIME you take all your medications each day (you can also include times for bowel movements, what you ate, and how you felt throughout the day). At one point during the worst of it, I was taking 6 different pills every two hours. There is NO WAY I could have independently remembered all of it.
Medication makes you constipated, so figure out what makes sense for your body. I prefer not to talk about it, but I'll just say that ex-lax and stool softeners helped to balance the morphine. Don’t forgo certain medications because they make you constipated—figure a way to balance it.
Get a medication caddy (okay it’s really a shower caddy) and a label maker to add the name of each medication to the top of the pillbox - this is helpful for you when you are super “foggy” and your caretakers. Thank you Melody for this suggestion. <3
Talk to your doctor about when you should start using the dilator - everyone I have talked to seems to have heard something different from their doctors so work with them for the best treatment for you (I started 6 weeks after my last day of treatment, but some start during treatments).
Walk around as much as you can. Stretching is key! Once bedridden, you won't be able to do either, so try to get out as much as you can. Look up stretches from bed on YouTube and try doing them while bedridden (if you can—don’t push it).
And during the time you are bedridden (or at least stuck close to the bed), don’t bother with pants. I either wore a long t-shirt or really soft pajama shorts when I could. And I wore the shorts under my sweats when I had to go to doctor’s appointments because regular underwear was too tight.
Your oncology nurses/doctors will recommend different ointments for your radiation burns. Use them liberally. Flushable wet wipes are much better than scratchy tp. Invest in several packs (especially important during a pandemic when people are hoarding tp, etc).
Acupuncture is GREAT for aches, pains, and stress. Start with this treatment in conjunction with your regular cancer doctor’s visits (and see if your insurance covers part of it!).
Get a sitz bath to go over your toilet. The salt will help with the radiation burns. If it burns when you urinate, pee in it with cold water. It’s kind of like peeing in a pool, but it helps so much. Get the bath and salt here.
Work with a loved one on all aspects of life (driving to appointments, childcare, making dinners, etc.) because you will need help with a variety of things, and talking it through beforehand helps to mitigate any bumps once you start feeling really weak. My husband took care of the four-year-old, me, and himself for the month I was in bed, and it wasn’t easy—but the restaurant and grocery delivery apps definitely helped to make sure he didn’t go hungry while he was taking care of everyone else before himself.
Schedule time for others to help out. We created a calendar with friends and family to help drive me to appointments and take care of Rye/Jeff/myself, and it was so helpful to have them all. They ALL took COVID tests and quarantined before coming to see us. You will need the most help in the last week of treatments and the following month right after radiation ends.
If you have long hair and are not losing it due to chemo, have someone brush your hair every day. During the worst of it, I couldn’t shower, and I could barely get up. I ended up with two very large dreadlocks, and once it was too late, I couldn't get them out on my own. I was too weak, and so I needed professional help. Thankfully the amazing team at The Beauty Spot Santa Rosa was able to comb most of it out, and they only cut out a chunk in the back of my head. I can comb some of my hair over and it looks pretty normal. This is a random piece of advice that I doubt anyone would think about beforehand.
It took about two months out of treatment to start feeling "normal” (which is a relative term in 2020, of course, because nothing feels normal). I really thought I would be back to work after two or three weeks, but my body and my mind had other plans. Talk to your employer to see if you can ease back into work life, because the brain fog and fatigue is real, but it does go away.
Get over being embarrassed about talking about symptoms, treatments, and anal cancer in general. I talked about poop more in the past few months than I did when my son was born. And I get it: it's embarrassing to admit you have anal cancer, even more so because it’s derived from having HPV. But, the more we weaken the stigma surrounding it, the more people may get their symptoms checked early (my symptoms were hemorrhoids). I also just found out that Marcia Cross (the redhead from Melrose Place and Desperate Housewives) had anal cancer back in 2017. She has done a great job of sharing her own story.
Even More Anal Cancer Treatment Advice with a Focus on Eating:
For the most part, I didn't have an appetite and nothing tasted good. It VERY much reminded me of being pregnant. Certain smells would make me hate a specific food, so I stuck with lots of oatmeal and bland stuff to keep up calories. But, like I said, protein shakes kept me going! When you are in the lowest moments, don't focus on eating SUPER HEALTHY, just make sure you are eating enough. <3
In terms of eating right during treatment and after — stick to as many veggies as you can (IF YOUR nutritionist agrees - for some heavy fiber may not be a good idea). Currently, I am low-sugar, gluten-free, and no dairy (aka NO FUN) just to boost my immune system and energy for the next several months at least. I am super focused on getting 8-10 cups of fruits and veggies a day. That gets fiber in your diet, which is helpful for digestion (and digestion is one of the most important things to focus on when dealing with a tumor in your butt).
Protein/veggie shakes made sure I was getting enough to sustain myself. My personal favorite is the Kale & Protein by Amazing Grass (subscribe & save is awesome for buying this protein shake). I lived off of my protein shakes during the time when I was bedridden and eating anything felt like a LOT of work.
Eat a tablespoon of sauerkraut every day (personally, I LOVE Wildbrine’s Red Cabbage & Red Beet Organic Sauerkraut, which you can get at Whole Foods, or the Raw Green Organic Sauerkraut, which you can get a HUGE tub of at Costco or a small tub at Whole Foods). It is great for your GUT (and, in turn, is great for feeling better). Try eating more fermented foods in general. Even fermented pickle spears.
When it comes to health after your cancer treatments, think about the things that keep you healthy in general: eat your veggies and move around. Please know, however, that this is not me saying, “EAT KALE AND IT WILL CURE CANCER.” Eating healthily made me feel more like me. What you consume is about listening to your body. The other day, I had two pieces of cheese pizza, and my stomach, my sleep, and my bowel movements HATED me after. (But, it was delicious and worth it.)
Please remind yourself that it will take a while to find a groove again, and even longer to start feeling like “yourself.” For me, three months out, I can say I am almost there. Now I just need my tumor to fully go away (we won’t find out officially until about March 2021), and I can move on to the anal cancer remission stage.
These are just some of the tips I have provided in the last few months. It's definitely not everything. Communication with your doctor and friends is key.
I will say that no matter how horrible the days were, they went by quickly, and there is a light at the end of this tunnel. My type of stage III anal cancer has a good chance of recovery—even if that recovery means that I still have to have surgery in the future.
Hug your loved ones. Make sure to connect with your doctors and cancer nurses as much as possible - there is NO SUCH THING AS AN EMBARRASSING QUESTION!
And if you want to talk more about what to expect during anal cancer treatments, please know that I am here. @sharayray on Instagram or email me at shana@shanabull.com <3
