Informational only for family

we need to create a two page document, explaining to our families what we are going through, my family does not have a clue, if I had a "handout" that would outline our basic needs that might help, , things covered might be , what chemo is, what it does to us, our medicine needed, dietary restrictions, what kind of help you would like, temperature / fever, liquid's , all you want is to lay in dark quite room and have some one check on you ever four hours would be nice, no steak dinners, no parties ,

baking soda , salt rinse , etc the fact that we just feel sick,

I just found out that the chemo effects are additive, cumulative , and after you hit #5 you may not recover much between cycles.

love and peace

16 Replies

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  • This already exists, please see: patientpower.info/about-pro...

  • not much of a guide as far as I can tell

  • I agree 101%

  • It took a two page guide to assemble my grandsons peddle kart.

  • you are right , we may need a three page guide

  • I think we also could use some info on what to do after your spouse dies .who to call what to do and some support ..I'm opting out going to unsubscribe to this site and others ....mr jack talk to your oncologist radiologist they should have a print out for this .nurses provide this info all the time ..they your family and friends need to know about what you are going thru ..can't agree more ..

  • There is support for family members. I can't remember the names of the groups but check pcr.org and see if there is one there . there are several which pair a counselor "angel" to the appopriate person. you just need to email and you will receive a call back in 24 hours. I did.

  • Why you going Cancer09?

  • You might also see if there are any prostate cancer support groups in your area in particular or cancer survivor support groups in general. The usually have such forms and/or you can talk to people that have been there/done that and they can give you assistance.

    In addition voice your requests/needs etc. to your family. You may receive help to prepare such documents. You may also want to consult a family attorney to be sure you have needed/helpful documents prepared properly in advance (I am not an attorney but have had power of attorneys etc. prepared).

  • I was quite taken aback, and hurt, when my daughter called me lazy last week. I've also had a couple of physical run-ins with my son, who thinks I have no problems. He actually accused me of playing up my illness. Really? My wife doesn't seem to get it either. I'm expected to deliver like I was 40, and healthy. It gets a bit...insane. So, I just ignore them when it comes to talk about my health. Bummer.

    Joe

  • I feel you Joe

  • Joe, this happens sadly to most chronically ILl patients. due to painful diseases , I have similar experiences as I got sick at 20 and I'm 41 tomorrow . I had to learn not to keep trying to prove anything to anyone begging them to understand . sometimes, also , people don't want to understand because it hurts that it's real. my father plays down his illness because he doesn't want me to be a wreck, but I know he's doing it so I'm still a wreck lol. listen to your body. This is how i flipped my thinking :be grateful that some you love don't understand . the reason they don't get it is because they have never experienced anything similar and you WOULDN'T want them to xoxo

  • It's totally unacceptable Joe! I'm so sorry.

    Jackie

  • I've whined about this before Jackie. It'a also totally unnecessary, and cruel.

  • It's NOT whining Joe but it is unnecessary and cruel :(

  • Maybe a gentle hug every 4 hours too Mr. Jack ;)

    Jackie

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