Well, it’s happened yet again. Another good friend of mine has been diagnosed with FC (f-bomb cancer for new readers). I’ve been spending a fair amount of time wondering WTF is going on. This f-bomb disease sure seems to be everywhere.
This week is my friend’s “chemo” talk with the doctor. Ugh. I remember that talk like it was yesterday (though for some strange reason I still can’t remember what I had for breakfast).
As you or anyone you know enters into this world of mess, puhleasssse learn from my mistakes (as well as some of the things that I did correctly!).
Here are a few recommendations:
- Bring a friend or family member to sit with you and actively take notes while you talk with your doctor. Because this is such a deer-in-headlights time, having a level-headed person with you will help you understand what your doctor says during your visit and will help refresh your memory afterward. To get every detail of the dialogue, you may want to consider tape recording the conversation (with your doctor’s permission, of course).
- Because Google-ing a disease can take you from fear to terror (because there is so much misinformation out there!), I recommend that you ask your doctor for printed information or sanctioned websites that are available on your specific type of cancer and treatment.
- If you feel like your doctor is talking quickly, it’s ok to ask him or her to sloooooow dowwwwn or to repeat an answer. This is a pivotal, earth rocking situation and taking in small bits of information, slowly is key to helping you digest it all.
Additionally, here are some of the questions that I recommend you ask at this meeting. Click here to download and print out this list so you can take it with you. This will help you get all (or at least your beginning) questions answered.
Please let me know if there is anything else that you would like to add to the list! If you have to use this list of questions, I am sending all of the biggest and best Silver Linings to you!
(Also, if you’re curious about the chemo process, you can read my entire (and, ahem, candid) experience from start to finish in the Chemotherapy section of the Cancer category.)
This is extremely helpful. Wish I had this list of questions when I was the deer in the headlights. Will print it and keep it for others. As you said, this f-bomb disease sure seems to be everywhere.
Thank you and happy Monday, Hollye!
Also, I wanted to wish your friend well. With you as support, she's already ahead!
Thank you so much, Kim!
Thanks so much as always, Kim! Your input is always so appreciated!
I have Non Hodgkins Lymphoma. After six year wait, it presented for a third time in my femur and abdomen. My husband, who is pretty amazing, went with me for the doctors appointments. But in addition to another set of ears, he recorded the conversations. Easy to do on a smart phone. He was wise. We tend to hear what we want to. I shared at dinner that the orthopedist gave me permission to swim. My husband laughed and pulled out the recording. The doctor denied me nine times and then said "ok but with restrictions". All in one short conversation! I agree with the questions above, but suggest recording.
Dear Jeri,
Thank you so much for your note. It is indeed a great recommendation to record conversations. Isn't it amazing how much can be lost in translation. Phew.
All my very best wishes to you. Please stay in touch and let me know how you are doing!
Hollye
This is a great post, Hollye. Having someone you love and trust with you during doctor visits is, I believe, so, so important. My Dad and I were my Mom's sidekicks when she was going through treatment. Usually both of us were there, sometimes just one, but she always had a backup. I really believe it made a difference for her to have at least one of us at her side. Definitely ask a lot of questions, make a list of them. Even if they sound silly or uninformed to you, ask them anyway. Absolutely ask whoever is speaking to slow down, a lot of information is thrown at you in a short span of time. We were blessed with a wonderful team of doctors, nurses, assistants. Your friend is in my prayers, I hope all goes well.
Thank you for your note, E.B. I really appreciate it! How wonderful that you and your dad were alway there of your mom. I am sure that it made a world of different to her. Thank you for your kind support, as always!
Hi Hollye: Wow, no kidding about those questions. I really did appreciate that I found out exactly when my hair would fall out and was able to prepare as much as I could. That was really really hard for me, but I got through it and my hair did grow back. Take that FC
Thank you for your comment, Sabine. Take that indeed, FC. Hope you are well!
Ask that each and every person who comes in contact with you be fully gloved as well. I had at least two nurses who would rip the tips off of their latex glove so "they could palpate a vein better" during scans (when my port couldn't be used for contrast) but all the while my immune system was suppressed. I ended up contracting MRSA while in treatment. 8 times! I had to be admitted twice for surgery and IV anti booties to remove the MRSA and am permanently scarred from it. You cannot trust even your well trained medical staff to take best care of you…only you can do that and so bring someone along who is schooled in your treatment because you won't feel like fighting yet another battle for proper care. It is exhausting.
What a fantastic suggestion, Koryn. I couldn't agree more! Thank you for your wonderful addition. All my best wishes to you!
i was diagnosed with matastic stage 4 breast cancer fighting it since 2008.im on my 3rd round of chemo,this time pretty hard and lots of depression.it spread to my bones and ovaries ,had a hysterrectomy and broke my hip.im 51 years old.its been a battle!!!also had a side effect called graves disease.seems like 1 thing after another.hoping this time i get a good break!!lol
Dear Tina,
Thank you for your note. I'm so, so sorry to hear that you have had such a long and difficult struggle.I am hoping that you get a good break…and NO MORE BONE breaks! Please stay in touch and let me know how you are doing.
All my best,
Hollye
One more question: Can I continue to take my vitamins in conjunction with my chemotherapy?
Dear Theresa,
Thank you for your note! What a great question. Because so many of us are on so many different types of chemo's (and we, of course all react so differently), I highly recommend talking with your doctor about whether or not to take vitamins. There were some that my doctor said were great and others he said not to take during chemo.
Also, some unsolicited advice: I worked with the team's nutritionist to learn ways to help curb nausea and potentiate the good effects of chemo. Engaging the entire interdisciplinary team of people is such a great way to help the entire treatment experience.
I'd love to hear what your doctor recommends.
Many thanks!
Hollye
What a wonderful thing to share, and the replies too!
Although I am 8 years (knock on wood) out, I still can remember the fear and confusion the first few weeks of surgery/chemo/radiation. I will echo the suggestion to bring along someone with a clear head, and to take notes or record. You and your loved ones are in no shape to focus on all the details.
The other two musts are 1) asking your doctor to explain everything at your level. Do not be afraid to say "I do not understand, or what does that mean?" I often hear women say that they did not, but felt stupid for asking or felt they were annoying their doctor. Oncologists/radiologists and surgeons make wonderful money, and asking them to make sure that you know what is going on is part of their job description. You may be one of many he or she sees that day and sometimes it is important to remind them that it IS personal-to you. 2) Be your own advocate. No matter how nice or intelligent your doctor might be, it is your right to know all the options and make the decision. If something sounds wrong, or you'd just like to get a second opinion, please do. If your physician is offended by that, then your physician has ego problems, and you probably do not want to work with that kind of person anyway! Read, talk to other patients and survivors, and educate yourself. Knowledge is power.
Ok…I know I said 2 things, but permit me one more….
Do not be afraid to accept help. Let people do for you. I know that, as women, we feel we have to take care of everything ourselves, but this is the time to let the troops rally. It will help you, your family, and maybe most importantly, those who just need to do something for you.
God bless you all who are fighting that FC. May we all live to see the day when no one has to suffer from it again.
Linda
Dear Linda,
Thank you for your note! I am loving the great community interaction on this post – yes indeed!
Thank you for sharing your additional musts. I really appreciate the great recommendations.
Accepting help was really, really hard…but once I did, I appreciated it so very much!
Take good care and thanks, again!
Hollye
There just seems to be more and more FBC, and even though progress in treatment has been made, we still lose too many lives to it.
On my first visit with my oncologist he pretty much covered what my treatment would be, what I could expect, and what we hoped to accomplish. I was diagnosed with stage 1 ductal BC in situ with no lymph node activity following my lumpectomy. I was to have 4 rounds of chemo therapy, followed by 6 1/2 weeks of radiation therapy as a preventative. My surgeon had gotten all the cancer, as it had not metastasized.
My daughter, a nurse, came with me on a second visit and stopped the doctor on his suggestion of a port. She suggested that I could tolerate the 4 times of chemo without, and so I did.
I also suggest that my hearty breakfast of a bowl of oatmeal before chemo treatments kept me from getting nauseous. Of course with my witch's brew of chemo medication the cocktail also contained anti-nausea medication, but I still swear by the oatmeal.
You're so right, Carolee. There is indeed so much more FBC. It's really crazy. Great suggestion about the oatmeal. I also ate it whenever I could. Did you know that adding cinnamon to oatmeal is a great anti-nausea tip? Love it!
Thanks, again!
Obviously, your information is timeless. I was diagnosed with triple-negative invasive ductile carcinoma two weeks ago. High grade. Scheduled for Mastectomy first week of 2015! Thanks for sharing the Chemo tips. Will be doing Chemo since the cancer is not receptive to any hormone drugs.feeling upbeat though.
Thank you for sharing, Sunny. Sending all of my very best wishes to you! Please stay in touch.