Be active in your treatment

[Pandora8205]

Seeing is believing, from day one I always ask to see every MRI, CT , PET scan, X Ray, bloodwork. I am not know what I am looking at. But I ask and say show me. Every spot that I see that does not look right.. and where everything is located. Then I go home look up and try to understand all those words I don't know. It is very overwhelming. Even the bloodwork. When you have been around cancer. You just don't know the devastation and how it changes your life. I start new treatment this morning. I am really mot ready for this.....

[BrigidK]

It is a lot to swallow. Good for you for taking such an active role in your treatment. Knowledge is our best tool. As for not being ready for cancer, none of us are.

[FtB_Peggy]

Pandora, good for you for being so carefully involved in your diagnosis and treatment - that is exhausting, but worth it in the long run.

I am so very sorry for what you, and so many others here, are facing day after day, year after year. Hang on to someone you love, trust yourself, keep learning and asking questions.

You are not alone, please keep talking to us. We want to help.

[JeanE41]

Good for you. The only way we can make informed decisions about our care is to know and understand what is happening and what our options are. There is so much to absorb when we hear that dreaded word cancer. Eventually it becomes clearer. Take this journey one step at a time otherwise you will be overwhelmed. Do you have someone to accompany you to your appointments? I found a second or even a third set of ears invaluable. Then when you are ready, you can compare notes about what was said. Sometimes we only hear a small portion of the information given.

May you have a smooth and successful treatment. Please continue to post here when you feel ready. We support and learn from each other.

Jean

[Patti72]

Pandora, how did it go yesterday., Yes, the whole journey is terrifying, I admire your tenacity. Hear to listen my sister in Christ. I am honored to be with those who choose to stand up to this monster! My God grant you healing, peace, and comfort. Amene🙏

[ThePurplePlace]

Pandora,

My best to you as you begin your new treatment -- I agree this can all feel very overwhelming and this is so much to learn.

I also think you are very wise -- and truly believe we all need to be our own "Patient Advocates" or have a care-giver to help us. I also like to see all my scans, labs and such and my hospital has an "Online Patient Portal" where we can go online to read all the reports and test results. If I don't understand a term, I also will look it up or ask my team about it at my next appointment.

I also am blessed to have great team and they always review all my scans with me on a follow up appointment and show me all the images and compare them to previous images to show me the changes etc. I also like to go online and read up on research and new treatment options and talk to people who are facing and dealing with the same illness. I find support groups like this one, to be very informative and I have learned so much for "talking and listening" to other who are going through the same thing. I believe we can all help each other, especially from a patient's perspective.

I thank you all for sharing your time and knowledge ---

~ Lisa

[PegD]

I hope your first treatment went well. Staying involved in my treatment options and educating myself has become my new passion. One could say it's my full time job! Creating a team that consists of medical experts as well as complementary medicine practitioners and practices has kept me strong. Staying in touch with others on this journey has also been incredibly helpful. We are here for each other. Wishing you all the best.

[Ruthie1950]

You are definitely doing the right thing. I believe it is very important that you stay on top of the disease by asking questions, researching information on the treatments your doctor has chosen and even researching the drugs and side effects of those being administered.

You're definitely headed in the right direction.

God bless you.

[Pandora8205]

Well 4 days later. Achy sore all over. Throat hurts and mouth taste horrible. Tylenol and lots of ice chips...

[FtB_Peggy]

Oh, Pandora. I am just so sorry. Please rest and pamper yourself. Thinking of you.

[PegD]

Pandora, sore throat, mouth/tongue sores and total loss of taste are my complaints as well. I actually sucked on ice chips during my last infusion and it helped my tongue tremendously. What treatment are you doing?

[Pandora8205]

Peg. First treatment of taxotere and cyramza on Wednesday then nuelasta shot on Thursday. Now achy,fatigue and mouth and tongue awful. Neck shoulders and throat hurt. Tylenol and ice chips all day. I will probably to hydrocodone to sleep tonight.

[Linshom]

Hi Pandora, Good for you! I've worked as a medical copyeditor/ fact-checker/ proofreader for many years, and know the importance of being a collaborator with your physicians and care teams. I've always gotten every x-ray, MRI read, PET-CT scan read, CT scan read, bloodwork results (the latter are available to me online, as well as allergy lists and medication lists that I can correct and/or add to), and every consult note written by my doctors for many years for a variety of serious comorbidities, as well as two malignancies. I research everything. I ask questions. And I get answers. My relationships are a dialogue. I think this is the only way to be a patient--in many cases it's a matter of life and death, and your physician and care team are your partners. This model of relationship works, and there's a lot in the recent medical literature saying the same thing to physicians and care teams.

[scifiknitter Blogger]

Pandora,

This is very wise advice for us all, both people just starting their treatments and people who have been at this for a while. I have a clipboard where I keep scan reports and blood test results, and I take it with me to every appointment.

I'm sorry to hear that the side effects of your new treatment are so uncomfortable. Sending best hopes that they ease soon.

Anita