Share your experience with chemo

In My Humble Opinion
21

A few years ago had throat cancer, so this is just my experience.

I don’t think anybody mentioned it, but the act of getting chemo is soooooo FUCKING BORING! You may get to sit in a chair for 8 hours doing nothing! And before and after the actual cancer drug, they have to flush with saline, give anti-nausea drugs, blood thinners, etc. Don’t even bother bringing something to read or knit, the drugs take the fun out of everything. Good God and sweet Jesus, getting chemo was some of the most boring times in my entire life.

You gotta pee? Wait until they can unplug you, and then help you drag the IV to the bathroom down the hall where you can wait in line. This usually happens a half hour after they give you a can of ginger ale.

And there might be days in between chemo when you need to get infusions of different things. So more sitting around in a chair. I had to go back for nausea drugs, hydration, potassium, I can’t remember what else. And lots of blood tests to figure out what kind of extra fun to give you.

And I think it’s the same deal as with radiation- it gets worse before it gets better. Some of the side effects happen after treatment is complete. The first few weeks are like “WTF, I feel pretty good.” But then 2 weeks after treatment is done, it feels like a truck ran you over. Good times. I still have “chemo brain”. Not as bad as when I was getting chemo, but those are some strong drugs that mess with your head. My wife still makes fun of my chemo brain 2 years later (and I blame it when I “forget” to do chores, etc).

If you want to have some fun- just ask how much that little bag of toxic green fluid costs. I think one of mine was like $17,000!!! Feel free to ask twice every time you go in, and then make some bad jokes, the nurses understand and will humor you, they’re always good sports. Just make sure you let them dress up in the biohazard suit first, and then ask why they are so careful when you are the one getting this poison injected into your body again… When they are done, ask them to go check the computers because you think they missed something and you want to sit around for another 3 hours doing nothing. Nurses love bad jokes and will remember you next time and be extra nice.

And I was lucky that I didn’t lose any hair. The chemo doc actually said that it wasn’t a side effect of the particular drugs I was going to get, before I could ask. (I’m a guy, but I’ve always had longish hair and would look totally different bald so I was curious, but I got lucky).

My case was pretty extreme, what with major surgery, chemo, and radiation. But one thing all of the doctors told me was that my new full time job was to let my body heal, that was the most important thing. You do you and do what you need. I wish you the best luck, and hope everything goes as good as it can! Just take it easy, and don’t feel guilty using cancer or chemo as an excuse. You only get one of these stupid, fragile bodies as we fly through the universe…

22

Monstro, I’m sorry you’re going through this. I had breast cancer, but it was only stage I, so I didn’t need chemo. However, a year ago a good friend was diagnosed with stage IV non-Hodgkin’s lymphoma. She was terrified of the chemo, but the oncology nurses assured her chemo is nothing like it was even a few years ago. They gave her medication to prevent nausea and the other side effects, and to her surprise, she sailed through. She lost her hair and did get fatigued easily, but nothing debilitating.

One word of caution: cancer makes you higher risk for COVID even after chemo is finished, according to my oncologist. You should discuss your work situation with your oncologist before making any plans about returning to work.

23

@nelliebly, the ONLY good thing about having cancer in the midst of a global pandemic is not having to get special permission to work from home. Everyone is working from home right now. I would be so stressed out if I was expected to go into the office right now. Like, I’ve still got this drainage tube hanging out of me from my surgery (which was two weeks ago), but I worked all day yesterday. I wouldn’t have had the guts to do that if I had to work in the office. Pre-pandemic, I was the annoying person in the office who never worked from home out of fear of lost productivity and fear of being judged negatively by management. But now, I’m all about working from home. I don’t ever want to work in the office. Having cancer has made me appreciate why folks with chronic illnesses and other special needs benefit so much from being able to telecommute.

My coworkers have been angels throughout all of this. They recognize that keeping myself COVID-free right now is of upmost importance, so they’ve been bringing me food every day (so I don’t have to go out in public). When they first organized the meal train, I was touched but I felt it was way too much. They’ve been giving me these ginormous (albeit delicious) casserole dishes that I can’t consume all by myself, as well as baked goods and shelf-stable stuff. But I realized that if I’ve got chemo in my future, I will have to step up my self-isolating game by a whole lot. So I’m doing what I never do: freezing all of my leftovers. (I hope the hurricane doesn’t wipe out my power, but at least I’ll have plenty of thawed out casseroles to eat while I’m waiting for it to come back on!)

24

What a blessing to have coworkers who care so much about you! I’m sure you’ve earned their affection. I almost hate to say this, but I wouldn’t be surprised if the casseroles keep coming during chemo. I hope you have a big freezer. :slight_smile:

25

@pabstist’s experience is a lot worse than we see at the infusion center where I volunteered pre-COVID.

Lots of people knit or read. Many sleep. Folks are often given some steroids as a warm-up med and those are mildly sedative. As are some of the super-duper anti-emetics.

At least at our facility there’s a mini TV at each seat and lots of folks bring their tablet to read or play lazy games. Of course there’s free WiFi.

Back when family was able to come along, most patients had somebody with them and so there was some conversation to pass the time.

Some regimens only take maybe 30 minutes in the clinic, others take many hours. 2+ hours is near the median.

Because many regimens are done on a weekly basis, pretty quickly you learn the other patients who come in your same day. And of course you learn the workers too. It becomes sort of a club.

Sometimes you have to look awfully hard to find the pony in the pile of horse manure. But it’s in there. Trust me.

26

TMI possible later in the post

This, a million times this! The procedure is nothing, twilight sedation to keep you from freaking about them cutting in a stitching a tube into a major blood vessel, they versed you so you don’t remember the huge needle injecting the numbing agent in, a few random tugging sensations, a little pressure and you are done. I spent my time chatting with the gas passer about her choice of lipstick color [a wicked good deep maroonish red, matte. One of my favorite colors.]

It needs to be accessed and flushed every 6 weeks if it is not being used for anything else so once my chemo was over I went in a cycle of flush and bloodwork/appointment or sigmoisoscpy or CT/MRI with contrast depending on which point in my treatment/monitoring plan I was at.

For during chemo and radiation/chemo, so freaking worth not getting a needle shoved in my arm every week! I was almost a 10 gallon blood donor and they scarred one cubital pretty much permanently into uselessness for IV purposes … about 2 cc of EMLA cream, capped with a gatorade bottle cap with medical tape 90 minutes before tapping, no pain =)

Previously mentioned, take advantage of optional meds - I didn’t need anything for anxiety, but the zofran was amazing! 3 forms - nondissolvable, a mint dissolvable and a multiberry dissolvable. I found the multiberry disgusting, but that is because it is not a flavor profile I like. Not having nausea was most excellent - though I still had food issues, at least I didn’t vomit unless I was ambushed by the smell of sausage peppers and onions frying up =)

I had dry eye issues, so I used Walgreens Soothing Eye Wash when awake, and a gel neutral eye drop and a sleep mask to keep my eyes shut while sleeping. Dry skin, a neutral lotion, a silicone skin preparation for a certain part of my anatomy for irritation, and lip balm for dry lips. I found I didn’t have oily skin or scalp issues, bathing with soap more than once a week gave me nasty dry skin, and I pretty much only washed and conditioned my hair once a week. I found oddly enough any acne I normally had vanished while on chemo, and the critters that cause body odor also seemed to die off.

Take advantage of the offered nutritional consult, they have recipes and suggestions. I was on a drug that made me incredibly cold sensitive, so icy drinks and such got painful and sometimes caused hives [I could write on my arm with an ice cube, and erase it with a warm cloth =) ] I found certain foods were better accepted, the BRAT diet white modification [bananas, rice, applesauce/apples, toast with poached chicken, tofu, white fish - all pretty bland] works, metal makes your food taste nasty. Haribo makes a ginger/lemon gummy that is good for nausea, and someone on amazon sells an all natural chewing gum in ginger that is amazing.

27

I keep thinking of additional things, so apologies for not gathering all my thoughts before replying. I could blame chemo-brain, but given that it’s been five years that’s a bit of a cheat.

@monstro, I know from past threads that you have challenges forming “typical” relationships, but this is a time to reach out when you need the help. Except for a couple of initial visits and procedures that made it unsafe to drive, I drove myself to and from all of my chemo and radiation sessions. I think that was my way of having an illusion of control. But when I needed it I knew friends, family and co-workers were there to help. I got especially close with my father-in-law’s sister-in-law who’s about 8 years into dealing with metastatic breast cancer. Having someone you can vent to and cry on their shoulder cause they’ve been where you are is invaluable.

28

Those a good suggestions, @JohnM.

I’m still very much a loner. Before I got this diagnosis, I would have never thought I’d welcome people to help me. But as soon as I knew I was going to need surgery, I pulled up my big girl britches and asked family to help. My mother and sisters spent a week with me post-surgery and they have said they will help out again if’n I have to have chemo. And I have two wonderful friends who have helped me without making me feel like I’m burdening them.

Even with the help I’m expecting, though, I know it will suck to have to handle chemo all by myself.

29

I had DCIS (Stage 0, grade 3) widespread in one breast, and lower grade DCIS widespread in the other, plus Stage 2 IDC in one breast (invisible on mammogram and not palpable, appeared on MRI), plus a positive node in the breast and one in a sentinel node.

Chemo experiences, and chemo centers, differ widely. I had 4 rounds of Taxotere/Cytoxan chemo administered through a chemo port. Here was my typical chemo day:

  • [For a specified number of days before, take pre-meds including steroids]
    Get up early and have breakfast
  • Be driven to the cancer center (over 100 miles away).
  • At an hour before my appointment (sometimes while still in the car), treat the chemo port with EMLA cream (a numbing cream), covering it with Press-and-Seal
  • Stop for coffee
  • Enter the cancer center, check in
  • Fill in my medication form, get vitals taken
  • Have labs drawn (basically, blood counts)
  • Nurse inserts needle and connector to access the chemo port
  • Enter the chemo area
  • Get seated (group area, big windows, snacks available, reclining chairs)
  • Pre-meds are administered (steroids, anti-emetic)
  • First medication IV hung
  • Often, a nurse would check in with me
  • Read, talk to my wife or other patients, take a walk around the center with an IV poll, eat a lunch we’d brought in
  • Second medication IV hung
  • Nursing observation
  • Exam by oncologist
  • Pack up stuff, wash hands
  • Go to Thai restaurant for early dinner
  • Check in at hotel
  • Wipe down hotel treadmill and walk for an hour
  • Shower
  • Get into pajamas
  • Take steroids
  • Stay awake totally wired from steroids, listening to an audiobook
  • Eat breakfast
  • Return to cancer center
  • Have vitals taken, report any symptoms
  • Receive white blood cell booster (this can be done at home with a stick-on injector these days
  • Check in with oncologist
  • Go home
  • Initially, I had an oncologist appointment the next week, but only the first 2 times

ETA: my oncologist wanted me to have Adriamycin, which is harder on one, but half my family has medical issues that contraindicated this.

30

@susan, you’re reminding me that I’m lucky I don’t have to travel that far for my treatments. Your schedule provides some really cool insight, though.

31

Monstro, if you need any kind of other surgery before starting chemo, they can install a port at the same time. If a port is not appropriate, they may install a PICC line, which is placed in your arm.

Is there a chapter of Gilda’s Club in your area? They will probably be as helpful as anybody.