Bill's New Idea

[Bill]

Hi everyone! I hope and pray you are all doing well. I just got done making a post to Lee and his wife Colleen at the newcomer's site. I realized that I have repeated myself, more or less, in several different posts in regards to the beginning steps to take once diagnosed with cancer. Many people are overwhelmed and don't know what to ask or do at this point. What if we got together and formed a list of things to do and important questions to ask that perhaps we could post on the newcomer's page for new people to download and take with them to the doctor's? I know all situations are different, but a simple advice guide might help alot of people. It should not be too overwhelming to a new person, but include basic things to do to help comfort them and give them a "plan for action" Maybe something like this is already here, I don't know. Love to you all, Bill

[BonnieR]

I love the title of this thread! Good idea Bill. It would be so helpful to newcomers to have a handy guide of some sort in one place. Have you thought of a format? Maybe even one thread in the welcome section where we each just submitted our suggestions?

[LOPSIDED]

I Know I Hardly Ask Anything, I Just Showed Up And Mainly Concentrated On Trying Not To Cry. I Am Usually By Myself And I Know It Was Months Before I Really Had Any Understanding Or Could Even Begin To Think Of Questions. In The Begining It Was All About Trying To Drive To My Appt. , Walking In The Office And Please God, Let Me Stay Composed While I Wait In The Waiting Room And Look At The Other Sick People And Please Don't Cry With The Doctor--I Failed That One.

2 1/2 Years Later, I Stroll In Looking Forward To Seeing My Receptionist & Wonderful Nurses. I Can Always Tell The New People In The Waiting Room. This Last Time I Got Bad News, I Was On The Verge Of Tears With My Doctor But I Kept It Together And He Said To Me "Its Okay To Cry". I Almost Lost It, But I Waited Till I Got Home And Had A Good Cry.

I Think A List Of Questions Is An Excellent Way To Help Newcomers.

[Mary Anne in TX]

I think this is a super idea! Along with their finding a flyer, brochure, something that directs them to our site, and other major BC sites would be terrific. WOW, could I have used the information! ma

[dhealey]

Great idea Bill, I know when I was diagnosised I reasearched everything before I even saw the onc and I already had a treatment plan in my head until I found out I was her2 positive. I am a nurse and the medical side of me has to know everything up front. Not everyone has that foresight. I know while sitting in my chemo chair they would always bring the newbies over to me to talk. It helped me being able to help someone else. Most women have no idea what they are in for when first diagnosised. I now try to talk with all my patients who are newly diagnosised to ease some of their fears. It helps them and is like therapy for me. Let me know how I can help.

[Bill]

Hi everybody! Thanks for the feedback. Bonnie had a good idea, too. I was just remembering when we first had to deal with the cancer, it would have been helpful to have, maybe a page or two of "commonsense" things to do. Nikki was big on the notebook, with all questions, phone #'s, etc. If newbies had something they could focus on, just general good practices to adopt, like caregiver should eat well and take care of him/herself as well, try to get enough rest, don't be afraid to seek a second or third opinion, you know all of the things that you wish you could go back in time and tell yourself. Nothing that could be outdated tomorrow or have to be updated constantly, just something to give people newly diagnosed a sense of control over the situation, which, I think, would be a great comfort, a "we are in charge here type of attitude". I think as word of this site spreads more, more people will be coming here early on. Everyone of you "has been there and done that". I don't know, maybe we should spend a little time discussing the idea, and as a group in a thread, "vote" on the advice to give to newbies. I just remember all the new people that would come into the infusion room with that "deer in the headlights look", and I think if we can come up with a "to do" list, it would empower them and hopefully take away some of the fear. Thanks, Bill

[StephN]

Hi Bill and Everyone -

I picked up the latest CURE mag at my cancer center yesterday. There is a full page ad for a web site that includes just what we are talking about here. It is called www.chemotherapy.com (http://www.chemotherapy.com).

It is general, but does break down by cancers and has links to other sites, but NOT this one. Joe needs to contact them!

Here is their site map index. Maybe if we model something like this, that would work. Otherwise we should just refer the newbies to that site.

Site Map


Understanding Cancer (http://www.chemotherapy.com/understanding_cancer/understanding_cancer.jsp)
Cancer Staging and Grading (http://www.chemotherapy.com/understanding_cancer/staging_grading/staging_grading.jsp)
Treating Cancer With Chemotherapy (http://www.chemotherapy.com/treating_with_chemo/treating_with_chemo.jsp)
How People Receive Chemotherapy (http://www.chemotherapy.com/treating_with_chemo/how/receive_chemo.jsp)
Chemotherapy Cycles and Schedules (http://www.chemotherapy.com/treating_with_chemo/chemo/cycles_schedules.jsp)
Remission The Goal of Therapy (http://www.chemotherapy.com/treating_with_chemo/remission/goal.jsp)
Chemotherapy Side Effects (http://www.chemotherapy.com/side_effects/side_effects.jsp)
Managing a Low White Blood Cell Count (Neutropenia) (http://www.chemotherapy.com/side_effects/white_blood_cell/managing_low_count.jsp)
Managing a Low Red Blood Cell Count (Anemia) (http://www.chemotherapy.com/side_effects/red_blood_cell/managing_low_count.jsp)
Managing Low Platelet Count (Thrombocytopenia) (http://www.chemotherapy.com/side_effects/platelet/managing_platelet_count.jsp)
Other Chemotherapy Side Effects (http://www.chemotherapy.com/side_effects/other_side_effects/other_side_effects.jsp)
When to Call Your Health Care Professional (http://www.chemotherapy.com/side_effects/call_doctor/when_to_call.jsp)
Treating Cancer in Other Ways (http://www.chemotherapy.com/treating_other_ways/other_ways.jsp)
Surgery (http://www.chemotherapy.com/treating_other_ways/surgery/surgery.jsp)
Radiation Therapy (http://www.chemotherapy.com/treating_other_ways/radiation/radiation.jsp)
Biological Therapy (http://www.chemotherapy.com/treating_other_ways/bio/bio_therapy.jsp)
Hormonal Therapy (http://www.chemotherapy.com/treating_other_ways/hormonal/hormonal_therapy.jsp)
Tracking Your Test Results (http://www.chemotherapy.com/tracking_test_results/tracking_results.jsp)
Your Complete Blood Count (http://www.chemotherapy.com/tracking_test_results/blood_count/complete_blood_count.jsp)
Monitoring Tumor Markers (http://www.chemotherapy.com/tracking_test_results/monitoring/tumor_markers.jsp)
Glossary of Common Diagnostic and Laboratory Tests (http://www.chemotherapy.com/tracking_test_results/glossary/tests.jsp)
Understanding Insurance and Tax Issues: Insurance Tips (http://www.chemotherapy.com/insurance_tax/tips.jsp)
Insurance Terms (http://www.chemotherapy.com/insurance_tax/insurance/terms.jsp)
Medical Costs on Your Tax Returns (http://www.chemotherapy.com/insurance_tax/tax/returns.jsp)
Web Resources and Organizations (http://www.chemotherapy.com/web_resources/web_resources_org.jsp)
Resources by Type of Cancer (http://www.chemotherapy.com/web_resources/resources_by_type/by_cancer_type.jsp)
Support and Additional Resources (http://www.chemotherapy.com/web_resources/support_resources/support_resources.jsp)
Tools for Organizing Your Cancer Information (http://www.chemotherapy.com/organizing_info/tools.jsp)
Glossary of Cancer Terms (http://www.chemotherapy.com/glossary/terms.jsp)
Register for Programs (http://www.chemotherapy.com/programs/index.jsp)
Complimentary Subscription (http://www.chemotherapy.com/women_cancer/registration.jsp)