Wanting to Help Others -- Camisoles for Comfort Project

laurie

i think it is such a wonderful idea

it would have been a blessing for me if they would

have had that at the hospital i was in,,

hugs, laurie

It's wonderful you are doing this!  Good luck to you. 

The first thing I got was a patient guide 3-ring binder from my breast center that has been my Bible.  I still never leave home without it.   I keep it in the trunk of my car and I've been done with treatment since Nov 2006.  It has my entire history and all relevant phone numbers in it, drugs, surgeries, pharmacy, etc.  I think it's crucial for anyone going through treatment.  i've made books for people I know who have cancer but weren't given a book by their cancer team.

I also keep a large yearly calendar in there to keep track of all my appts.  I do not throw them out as the years pass, as they're great for a quick reference if you need to know a past date.

The first page contained a very comforting letter from my breast surgeon to her patients re breast cancer.  Second page contained a plastic sheet that already held all the business cards for my surgeon, nurse navigator, radiology center, oncology center, etc.  (pictured below.)

This was followed by:

1.  Overview of the Breast Center at AAMC...the team, procedures, resources, follow-up care, information resources, counseling, research, etc.

2.   Section entitled "My Care Team" with a printed list of everybody with phone numbers.

3.  My Reports section...which is now bulging.  They advised me to always get copies of everything, 3-hole punch it and put it right in the book.  I've been pretty faithful with this.

4.  Understanding Breast Disease Section.

     o Understanding Breast Anatomy

     o Breast Cancer Work Up - covers Hx &  Exams, biopsy techniques, and a glossery of breast cancer-associated terms and what they mean.  

      o Types of Breast Cancer

      o Breast Cancer Stages

5.  Treatment Options Section 

6.  Questions for Doctors Section

7.  Resources with a Q&A section re drains, exercises . Also gives names and addresses to buy wigs, lymphedema center, ask-a-nurse phone number, etc.

8.  Life Long Wellness section.  It gives you steps to remain healthy, has comments from survivors, a nutritional section 

9.  Last Section is entitled "Notes."

Here's a picture of the book:

Here's a picture of the business card section:

Laurie, this an an awesome project.  The ONLY reason I knew about the camisole was because I lurked here for 5 weeks prior to my mast. surgery.  This site gave me the majority of my valuable information.

I visited a Cancer Center about 40 miles away the month prior and met a wonderful woman there who gave my the ins. code and info to give to my surgeon so that the camisole would be approved.  She also gave me my little pillows for after surgery along with the ACS surgery booklets.  This lady was a lifesaver.  She's also the first person who gave me hope for the future.

My hospital gave me no help at all prior to surgery.  At my hospital, I was finally given an ACS packet 3 days before surgery because my cancer nurse was on vacation for the month prior to surgery and had only come back.  She also took the day of my surgery off, so my poor DH had to run interference for me. I think that all hospitals should require that the cancer nurse assigned be available when the bc patient is coming out of surgery.

Because of the many threads I have read with similar problems with lack of communication, I hope your project is wildly successful.

.

I received a bag with post-surgery follow-up info, ACS pamphlets, a book -Finding Your Way to Wellness- by the local Komen group, a handmade pillow ~6 x 10", a stress ball, a CD from Gilda's Club and some other stuff. I don't know if they give mastectomy patients anything else.

When I started rads I received a basket with a hat, gloves, gentle lotions & soaps, Philosophy "Grace" perfume, chapstick, note pad, pen, tissues, a lavender-filled stress ball, and the offer of a small stipend if I needed it. Oh, and a couple of chocolate bars