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May 8, 2020 08:37PM
Hi everyone! I'm also jumping in from the April 2020 chemo group : )
I just had my port placement on Monday, even though I had already completed 5 chemo sessions already. The procedure wasn't bad at all for me-- I was under moderate sedation which meant I was awake and kinda tripping in a fun, relaxing way during the surgery, and I didn't feel an ounce of pain. Yay! But about four hours later, after I got home and napped, I felt a lot of pain and discomfort like I was hit by a truck. I guess the pain meds had worn off! So I suggest discussing a plan with your doctor/nurses about what to do at home for pain management. I ended up taking Advil and relying on ice packs. The port site was incredibly tender for a few days and the soreness in my neck was the worst because I felt like I couldn't find a comfortable neutral position to hold my head without feeling like I was straining my neck. However, the most difficult part has been trying to cover it well enough to take a shower (only needed for the first week or until the glue or steri-strips come off). It's hot where I live so my skin is sweaty, sticky and dirty (haha) so the bandages don't stick well and I can't figure it out. Sigh. The pain mostly cleared up by Thursday (yesterday) for session #6, and I went into my chemo appointment feeling pretty ok! The first port access definitely hurt, but more from the pushing/touching of the still bruised and tender site than from the needle itself. My treatment center did not have numbing cream available and I didn't know I was supposed to get my own if I wanted it. Check into that in advance if that's something important to you! Personally, the pain of the port access sucked for a minute but it's temporary and I feel like I could do it again if I had to, though my nurse assured me it won't feel that bad next week. Whew. In general, some members of our April group said it took 2 weeks, or maybe 3, to really feel like themselves again with the port in their bodies.
About medical marijuana: It's legal in California and it's very easy to purchase here (shops still open during the pandemic because they are considered to be essential services, at least in Los Angeles). I hardly every used it before chemotherapy, but now, I rely on edibles, usually gummies, about 3 nights a week to help me sleep-- it relaxes me and takes the edge off of body pains (they're not extreme but distracting enough that it's hard to sleep). (For reference: I'm on a weekly schedule of Taxol, which is not one of the heavy-hitter chemo meds. I usually feel the most fatigue and discomfort on Days 3 & 4.) I also have some CBD oil (no THC to get you high, just the medicinal properties found in the CBD part) but I'm still figuring out the right dosage to get it to work right for me. It's a little more difficult to figure out because there isn't always an immediate effect, so most people rely on CBD oil as a daily regimen for long-term effects. Also, my oncologist is totally on board with any marijuana or CBD usage!
Good luck to all of you who just started chemo or are about to start soon! Before I started, I felt totally overwhelmed about how to prepare for it, especially during the pandemic situation that included quarantine, limited availability of items in stores, and delayed shipping times for online orders. Ugh. And I was trying to research everything on the internet, but there was just too much out there to digest! Like to ice/cold cap or not; should I start fasting or work on a high-protein diet; what kind of supplements should I be taking; do I need to stock up on lotions, nail treatments, wipes, etc. In the end, I realized that I could prepare my bag with the usual stuff for a long plane trip, trust the nurses and staff at the treatment center to take care of me, and just bravely walk in there on the first day and see what it's all about. I could always make adjustments for the next session and learn as I go. In other words, nothing had to be actually decided before my first chemo appointment. Once I cut myself some slack, it helped to ease my anxiety.
Here are my tips for starting chemo:
* Push fluids throughout chemo, but definitely focus on the day before, the day of, and the day after. You'll feel so much better if your body is well-hydrated and you can push out the meds as quickly as possible.
* The first chemo appointment ended up taking all day for many of us, even though the actual infusion time is only a couple hours or so. You might have to do blood draw first and wait for lab results, then there's all sorts of set up, and waiting for your meds to be released, and extra time for your nurses to explain things, and also the infusions are usually run extra slowly at first to gauge your reaction to each new drug (including pre-meds). So bring snacks, layers, blanket, ipad, Nintendo Switch, knitting, crosswords... anything to keep you comfortable and your mind occupied. And have your headphones ready and your favorite person(s) available for you to call or text at any time throughout the day.
* Bring a charger/cord (or two) for your devices, but also an external battery just in case you aren't near an open outlet.
* Don't worry about looking silly, overprepared, underprepared, whatever. No one cares. And if anyone seems to care and gives you judgey eyes, then just remember YOU don't care! Your main job is to take care of yourself and only YOU know how to do that best. And you have cancer, so give yourself a break, haha! So if you want to do the icing hands and feet thing even though no one else at your center does it, go ahead! Go ahead and bring two large bags of stuff because you don't know what you need- who cares? You could also bring nothing really and probably be ok since most centers have plenty of drinks, snacks and blankets for you. Dress however you want to! No rules! (Except for access to your forearms or port area, of course.) You just wanna be comfy and you're gonna throw it in the wash when you get home anyway. Walk in there high as F on marijuana? Sure, go ahead! My nurses say they definitely have some patients who are high on any number of things (anxiety meds, whatevs), and they are happy to take care of you no matter what. You be you, dude.
* Don't be afraid to ask questions! It's ok to admit you don't understand something or forgot something. While the doctors and nurses have all the experience and training to be experts in general, each individual patient is different. YOU are your own best advocate, and since most hospitals/treatment centers aren't allowing visitors right now, you might be the only one there to speak up for yourself. Make them repeat stuff, ask for printout or copies, write it down if you have to. Even though you're just starting and maybe you feel like you don't know anything, you're still ultimately in control of your treatment. And you don't have to worry about annoying them with your questions-- they'll still like you and be nice to you!
GOOD LUCK! We're all thinking of you, cheering for you, commiserating with you, and sharing the same fears, hopes, confusion and laughs. You can do this! We're all doing this. Together. Reach out to this group, or the AWESOME APRIL GROUP (wink), or even feel free to Private Message me or any of your new friends, at any time. :)
2/13/2020, IDC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH)
4/2/2020 AC + T (Taxol)
Prophylactic ovary removal
Whole-breast: Breast, Lymph nodes, Chest wall
Lymph node removal: Underarm/Axillary; Mastectomy: Right