- Joined: 7/16/2007
My tips for chemo...
Friday, February 20, 2009 6:07 PM
I originally emailed this just 20 minutes ago to a Komen sister who is beginning chemo on Monday. As I wrote, I began remembering everything that I experienced, and some things that helped me. Everyone reacts differently to chemo, and as unique individuals, with varying diagnoses, there are a few basic things that I found helpful. To that order, here goes...
I tried to limit myself to "top ten chemo tips", but as I wrote them down, I kept coming with another, and then my husband read what I had and added more. So I've combined some and expanded on others. No matter, here is what I know from my experience of very aggressive chemotherapy, six years ago. Remember, medicine and research has advanced to the point that some of what I relate is outdated and replaced, but I tried to list the basics, which we all go through...
Here they are, in no certain order (chemo brain!!!):
Always, especially before and after a treatment, hydrate yourself. The more water you drink, the faster the toxins flush out of your system, the drugs target the cancer cells, and if you keep on drinking water, and/or ice chips, you not only feel better, but your veins will be strong, and the poison...well let's just say I used to say "piss on cancer".
When your mouth is dry and nothing tastes good, keep plenty of hard candy on hand, like lemon drops, or jolly ranchers, or something similar. Sometimes, the water builds up and yet your mouth will be dry. Put together a "goody bag" of water, candy, and some of the other things I'm going to share. Keep the goody bag with you at all times.
Most chemo centers have free internet access (some you have to ask for the code), and they should all by now have televisions with DVD players, and some movies on hand. It's great to bring your laptop, if that relaxes you, or fav movies you love to watch, or just bring books. Remember THIS IS YOUR TIME, IT IS ABOUT YOU, so you get to do what feels good for you.
It helps immensely to take your significant other, or a very good friend with you for a couple of reasons...first to drive you there and back so if you need anti anxiety meds, you can take them, and your "person" (think Grey's Anatomy) is your second set of ears. If you haven't already been through the teaching portion of chemo, there should be an oncology nurse to explain things to you, as in meds, possible side effects, etc. However, make sure your person understands that their role is not to be chatty cathy, but to give silent support, take notes, and sit by your side. If you feel like talking, you will, if not, you absolutely will get irritated by someone talking about the weather or whatever.
If you develop mouth sores, TELL your onc team. There are such things as what I called my "miracle mouthwash" which was prescribed for me by my chemo onc, consisting of a special mix of different things, and I had some bad times with mouth sores. It's just a side effect, remember, chemo is not discriminatory, any and all cells are hit with the "blast"
Which reminds me, if you receive certain chemo drugs, ask if one of them is nicknamed the "Red Devil". If so, be prepared to pee red the first time or two you go to the bathroom. Don't freak out, it's normal.
Your taste buds most likely will change, some foods will have no taste, and others become a huge unchewable lump, that you might have to just spit out. Learn to go the way of malts, shakes, ice cream, baked potatoes, scrambled eggs, whatever it takes, you need to get food in. I didn't have any real problem with nausea (I was given meds to control nausea), and yet some stuff just didn't taste good.
Another very valuable thing I learned...take a journal, or a day-by-day calendar with you so that you can write what you feel, when you feel it, and what meds do what, and what day procedures were done. This serves several purposes...It keeps you focused on you and your health, it serves as a reminder when you go for numerous appointments and treatments, and it will be invaluable to you later on down the line when your brain is trying to understand the things you went through. Believe me, I STILL refer to mine, for everything from routine stuff, to trying to remember what I had when, to being able to hopefully reply to threads on Komen.
Last, but not least, please don't be afraid of whatever injections you are told you need post each chemo (if any). I had Neulasta 24 hours after each chemo, to keep my WBC's up. I also had Procrit injections to keep my hematocrit and red blood cells up (goes to energy). I'm pretty sure that these have been updated to newer, better meds, but I can only share what I know.
Don't panic, don't despair, don't look at the length of time you are facing treatment. Do what you have to do to get through each day. Sleep when you need to, cry when you want to, and take control of the remote! Seriously, it is tough, it is rough, but it is life saving.
Deb/aka Mimi Dx '03, ER/PR+, Her2+, Grade II, Stage III SNB, 18 wks chemo 36 rads;
Rec in 07, Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all