Overall Advice
- Request as much preliminary information as possible about what to expect.
- Ask what the worst week will look like and any side effects
- We found most hospital handouts too high-level and benefited greatly from using AI chatbots.
- Request morning appointments if possible - These have been shown to increase the likelihood of better outcomes and help you with better energy regulation
- Check supplements + alt therapies with oncology (Radiation in particular is sensitive: avoid antioxidants, hyperbaric oxygen, IV vitamin drips, red-light therapy unless cleared)
FIELD NOTE
Your job is survival, not stoicism. Speak up, do not be afraid to ask for help. Ask for nausea, hydration, and pain control before you’re desperate.
External Beam Radiation (Pelvic)
WHAT HAPPENS
These are (most likely) daily targeted sessions. They are very quick and painless in the moment.
- I found it soothing to play my favorite music while treatment occurred. Your primary job is not move. You won’t feel anything during the session.
- The doctors gave me tattoos on my stomach to more accurately line up the machine and made a mold for me to lie in so I wouldn’t move.
WHAT IT FELT LIKE FOR ME
- Week 1-2: I didn’t think it was that bad
- Weeks 3-5: Exhaustion and nausea hit me like a truck
- Burns develop gradually (external and sometimes internal)
- Because of the location of my radiation, I was unbelievably nauseous by this point
- Pelvic radiation may affect the bladder and bowels
WHAT HELPED ME
- Get your appointments first thing in the morning.
- Wear clothes without metal, so you don’t need to go through the hassle of changing.
- Put on Aquaphor at the first redness. I applied multiple times a day.
Chemotherapy
WHAT HAPPENS
You arrive at the hospital, and they infuse you with several pre-medications to help with nausea and your chemotherapy infusion(s).
WHAT IT FELT LIKE FOR ME
- Day 1-2 = deceptively fine. I took my best naps and got work done on these days due to steroids.
- Day 3-7 = the dark woods. It will peak as the steroids wear off on day 3 and then slowly taper.
- This cycle gets harder as treatment goes on.
WHAT HELPED ME
During infusion:
- I used ice gloves and booties to prevent neuropathy. This is not necessary for every type of chemotherapy.
- You do not need to wear these the entire time; you want your hands and feet to be cold, but you don’t need to get frostbite.
- I liked to bring my blanket with me to have something familiar, but the hospital always had warm blankets.
- Ginger chews to mask the taste of pre-medication
- Something to distract yourself: I liked to meditate or listen to music during treatment
- I did not get a port, but knowing what I know now, I wish I had. I ended up needing a lot of blood transfusions and additional hydration.
- Ask for additional hydration before and after chemotherapy to reduce the toxic effects.
NAUSEA
The majority of ways to curb chemotherapy nausea are all off-label. I would recommend getting them all from your doctor and trying them. Do not look up what the actual usage is online or any of the side effects. Just trust me on this.
- Ativan was the thing that reliably helped me.
- CBD gummies helped a bit. Just get everything and see what works best for you.
- Do whatever you can to reliably eat meals at the same time every day and keep your calories up.
Brachytherapy (cervical cancer specific)
WHAT HAPPENS (MAY BE DIFFERENT FOR YOU)
- You go under sedation or anesthesia
- A device (”applicator”) is inserted internally and positioned against the tumor area
- You are not allowed to move, sometimes for hours, sometimes overnight
- Radiation teams roll you to scanning and dosing rooms with the device in place
- You may have a catheter, compression cuffs, IV lines, a pain pump, and oxygen
WHAT IT FEELS LIKE
FIELD NOTE
Not to be trite, but it feels like being raped by a cactus while being pinned down on your back. It’s horrific, but highly effective.
Pain from the needles inside of you
- Deep internal ache
- Anxiety around immobility
WHAT HELPED ME
- Make sure you have an advocate with you to ensure you have enough continuous pain meds. Ask for continuous, not just the self-administered pain pump.
- The pain is short-lasting. The treatment itself is harsh, but I did not have as much pain after as I did with external radiation.
- Audiobooks > TV shows (too much visual input can be overwhelming)
- An adjustable arm or clamp to suspend a tablet so you can watch while lying flat
- EMDR therapy after I finished. I found it unbelievably triggering for previous sexual assault.