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@kayanonsen

Thank you so much for this; it is a powerful feeling to be validated. I had an appt with the oncologist yesterday just after reading your post. It went very differently. I have chemo today, my third round but I have more meds to deal with the side effects. I told her Everything that is going on, and it really seemed that that was the first time she stopped being busy and with one foot out the door to her next patient. So, thank you for that too. I'll see what this round brings, but I must say, I am not as frightened and I am more prepared. Speaking of which, if you don't mind, what would you do differently if you had to do it again?
Thank you again, so, so much,
Kay

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Replies to "Thank you so much for this; it is a powerful feeling to be validated. I had..."

Things I would do differently plus advice:
1) I would eat throughout chemo like I did after a trip to the ER for that bowel obstruction.
2) My superwoman neighbor, who has been through chemo 3 times for 3 different stage 3-4 cancers, advised me not to eat anything acidic during chemo to avoid mouth sores. I did as she advised and was spared that complication.
3) It's not fun researching to find out what is wrong with you during chemo after medical providers blow you off. If you have an egregious side effect, insist on being heard and taken seriously. If you remain baffled after your first inquiry, it's not your fault and you are neither crazy nor hysterical. Or, you may have someone, a friend or family member, who can break through that brick wall for you. If a nurse screening messages blows you off, as happened to me several times, try to get through to the doctor, who might already know what the problem likely is.
4) Ignore all who urge you to exercise during chemo if you're not up to it. While we all get why exercising during chemo would be ideal, some seemingly common sense advice is not necessarily realistic for everyone. I'm 64, not 24. I was fainting and having sinking spells to the point that I could have passed out during a walk, or even walking around my own home. I decided not to even attempt to drive my car. So when the oncology professionals kept insisting that I exercise during chemo, my standard response eventually became, "You first. Try a few rounds of chemo, hit the trail, and report back to me."
5) Rest, rest, rest. Fully healing from cutting, poisoning, and radiation over a period of months takes a lot of energy. Give yourself permission to be totally useless during this ordeal. I did.
6) Drink lots of water. More water than you might usually drink to avoid everyday dehydration.
7) People don't seem to understand that the end of all this therapeutic destruction is not the end of healing for us. Be clear and firm without guilt about what you need. After getting a good look at my own mortality, it sank in that I don't have to explain or justify anything to anybody. "No" really is a complete sentence!
8) Passive-aggressive or merely tactless people may say things to you that will blow your mind. Consider it a gift and try not to take it personally. When somebody shows you who they are, especially in your hour of need -- believe them. You don't have to say a word to them; they wouldn't get it, anyway. One woman remarked that it was my "choice" to lose my hair. Another told my bald self that I would look so much better with a little makeup. And even worse things were said. Now that I've crossed over into the Cancer Zone, I'm eliminating toxic people and things from my life, everything from processed foods and carcinogenic body products to a self-centered diva next door. I gave the diva another chance, and she turned out to be an incorrigible repeat offender. My mistake. Peace of mind is extremely important for healing. Say Buh-bye! to toxicity.
On the flip side, the people who do come through for you, who in my case far outnumbered the jerks, you will treasure even more than you already did.
9) For the hair if you lost it: There is reputable scientific evidence that a few drops of rosemary oil mixed with a small amount of scentless carrier oil, massaged into the scalp, is as effective as minoxidil in regrowing hair. There are Youtubes about making your own rosemary and oil concoctions. Don't waste your money on a pre-made product with rosemary in it - there's no way to tell how much or how little rosemary is in the product, unless you personally know and can ask the chemist who created it. I think it made me feel better during chemo to be able to do something simple to help myself schlep toward recovery.

I hope some of that helps. XO GJ