Things I've learned after being the main health care proxy for my dad.
Dealing with cancer (or any illness) is hard, very emotionally draining and time consuming. There's things I learned along the way that I wish I would have thought of in the beginning.
Go to Staples or Walmart:
1. get a canvas bag, my favorite has a long handle, easier to sling over my shoulder than holding in my hand. I found one at Walmart in the craft section for under $5
2. While your there, some white binders, I picked up the thinner one for every day carrying, and some thicker ones to store older medical info in.
3. Clear plastic sheets, these were great. I loaded the binders with them, whenever a Dr handed us paperwork, it went into the binder, into a clear plastic sheet. I didn't have to worry about punching holes in the paper, and it didn't get messed up either. If you see the ones for business cards, those are nice as well since every doctor you see will hand you one.
4. Dividers or page tabs so that you can easily seperate the various plastic sheets. You will see as you go what you will need to put as the headers.
5. Post it notes - various sizes. I always found a use for them. In the beginning, I used them to seperate the various stuff in my binder.
6. Pen/pencil case that attaches to the binder. Your supplies will always be on hand.
7. Pens, (blue, black, red) pencils, I liked the mechanical ones, didn't have to worry about a sharpener, highlighters, paperclips.
8. Thumbdrive - this was a life-saver some days, especially if your leaving a laptop at the hospital. I was able to type up an update in word, save it to the drive, then take it home with me.
9. Blank CD's (1 or 2 is fine) as some tests can now be saved to a CD.
10. Small photo album or binder photo pages. Grab your favorite family photos and carry them with you. If you are ever in the hospital over night, they can be tacked on to the cork board in the room. Makes it a little easier seeing the pictures of people you love, you don't feel as alone.
11. Ribbon. I used ribbon to hang cards in my dad's room on the days he was admitted. I hung them on the wall in front of his bed so that he could see them.
12. Get copies of test results & put them in your binder.
13. Paper - various sizes. I had a regular sized one for notes, plus a 5x7 type one as well as a small pocket notepad. Depending on the situation, I at one time used every one.
14. Prepaid cell phone for the person that was diagnosed.
15. If you have access to a small tape recorder that helps as well. It can work dual purpose as you can take it with you to doctor appointments and record the visit plus, if the person with cancer is in the hospital over night, they can use it as well. My dad and I would talk, he's tell me his wishes / thoughts. Having a tape recorder to record these conversations leaves no question as to what the person wishes.
At one point, my dad had his own tote bag, this included his own binder that had copies of his insurance cards and another with his drivers license & insurance cards. When he went for treatment 3 times a week, he had to give his insurance cards to be copied. It was easier to hand them a copy.
You also might want to think about a living will and tell someone how far you are willing to go with treatment / life saving if it comes to this. You also want to designate who your contacts are. Most hospitals these days will not give out a lot of information over the phone and the person/people you chose should get to know the doctor treating you. This will make it easier to get information if they know your voice.
Write it down - be sure to write everything down. You want to make sure you have not only the correct diagnosis, but also the spelling. The doctor is more then happy to spell things for you. It stinks to go home & want to research only to find you do not have the correct spelling & can't find it.
Ask questions. Do not be afraid to ask questions. Write down everything you want to ask when you think of it. This is where those various sizes of paper come in handy. There is no way you will remember every question you have.
While researching, you can either print the info & place in a large binder for the home or you can save the page to your computer. I used to save them and transfer them to the thumb drive so that when I had access to a computer, I could continue reading where I left off. I also saved favorites to the thumb drive.
These days you can save your favorites online. If you have gmail, they offer and online bookmarking site. They also offer online documents which is nice. You may also want to keep a journal, there are sites that are specific to cancer or you can use a site like Windows Live.
If you can have someone give updates to people you love it will make it easier on you so that you don't have to worry about it. Hand it off to someone else.
Keep your spirits up!
The cancer center dad was treated at loved my binder / tote bag idea, ended up having tote bags printed with their logo. I can't tell you how honored I felt and still feel over 2 years later. if you do the tote bag / binder, we used to take it with us no matter where we went so that it was always with us. This made life easier if we were out & a doctor called. I could grab the bag, go to the section I needed & continue my conversation. This was one reason why we had 2 bags going as my dad had his, I had mine in case were were not together when a phone call came in.
Do your research- this is the best advice I can give you. If you are not up to doing research, have someone in your family do it.
I can tell you from my experiences with my dad that not all cancer centers are the same. When he was sent to the Cancer Institute in NJ, I wanted to make sure he was at the best, but the best was in NY, NCINJ was the best here, so we stayed. My dad had a 14% chance of survival and had it not been for the treatment we wouldn't have had him for the next 8 months. At one point, he was switched to the local cancer center (Fox Chase) and passed within 3 weeks. The difference in care? Night & day. My dad had a PICC line, he got a fever (always got a fever after 7-10 days of the PICC being in) after they took it out his arm blew up. Dad begged the doctor to admit him, he wouldn't. Had we still been with NCI they would have admitted my dad.
I can not stress enough to research where you want to go. Most of the cancer sites have lists, and for us the NCI was on all of them, while the 2nd place was only on the American Cancer Society. You can research on the NCS site who they give grant money to in your area. Usually the higher the grant, the more work they do with cancer from what I've seen.
Get a 2nd opinion - Before starting treatment, you might want a second opinion about your diagnosis and treatment plan.
If it was me, I would make sure that one consult I had was a University type as they usually are the leaders and know the newest ways to treat.
Someone needs to know the terminology and various questions to ask. Maybe someone else has a better list, but one can be found
here. There's one that mentions clinical trials; this is what gave my dad more time. Had he not done a CT we would have lost him sooner. Chances are with the diagnosis you have, you may not need to think about that, but please keep it in mind if at some point things change.
Oh and hugs to all of you. Cancer has affected my life & my childrens life. I may at some point have the same leukemia my dad had as I was exposed to the same chemicals but am hopeful that by then, they will know more and be able to save me. It is my dream that one day no one will ever have to hear the "C" word again.
LINKS -
Cure Magazine has some great articles about various types of cancer and the newest drugs / proceedures out there.
National Cancer Institute - great site to look up clinical trials.
American Cancer Society
Mayo Clinic
Aging with dignity - 5 wishes - I suggest anyone with a cancer diagnosis get a copy of this. My dad was given one by the cancer center - it allowed him to choose how far he wanted to go with treatment.
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Using the links I gave
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