UPDATE Cancer/Cfids/Fibro HELP

Discussion in 'Chit Chat' started by sues1, Jun 25, 2007.

  1. sues1

    sues1 New Member

    OKAY GANG....I need some ideas on this. I will be going through chemo and radiology (SP?). Dr. wanted a couple more tests done in order to evaluate exactly what is to be done. So I was back at the hospital for them today.

    I told the cancer Dr. that my fibro and CF wipes me out and with all this treatment I am concerned, as it will make my fatigue and all worse. I am writing down questions to ask her this coming Mon.

    I think I need to sleep later than I have been able to because of tests, hospital, drs. and so forth. I have been getting up early. I feel better when I sleep at least to the "crack of noon" or such.

    So I will try to get afternoon appts.

    Pedilite makes me feel better. I am going to ask about that also.

    Any suggestions? I am going to ask about vitamins and such.

    Thanks Blessings Susan
  2. 69mach1

    69mach1 New Member

    how about a flu shot or pneumovax shot? hep B vaccinations...as well...just ask about what shots should be current.

    just still thinking here....of course we know you need to eat...i think they have some meds out there to help w/nasuea from chemo...

    anit-bacterial wipes in your car, in your purse, carry your own special ink pen to use at a bank or anywhere public you need to sign something for.

    wash wash your hands try not to touch your face at all...

    i know i am making you germaphobic already...but studies on how filthy our purses w/bacteria is disgusting...we sit them down on the public counters bathrooms, grocery carts...you get the idea.

    i hope this may help.

  3. sues1

    sues1 New Member

    One of my sons is researching this. He saw where one woman now wears gloves when she goes out shopping and places. Makes a lot of sense.

    He also has been in touch with various ones that suggest second opinions and all on treatments available, etc. One suggested Cleveland Clinic, because of the CF and Fibro, that they would understand the total picture more.

    I said that I never heard where CC was a place to go to for my CF and Fibro. Somehow that does not seem logical in my mind at this moment.

    I already was thinking a long the lines he talked on. I just do not think straight, like I used to. Any pressure mentally and my mind becomes fuzzy. So I have been treating it more lightly in order to cope with all. Only people with our problems would understand this.

    Son is thinking of getting the key people in my life together and work on this.Also to work with helping me through this.

    Thnaks for your thoughts and love...Blessings, Susan
  4. Jude

    Jude New Member

    Sorry you are having to go through this. Try to get a dentist appointment for a cleaning before you start chemo. This won't help your FMS & CFS but it will start you out in a more favorable position before going into treatment. Everyones experience on chemo is individual. There are many good anti-nausea drugs now. If one combination of anti-nausea meds doesn't work for you keep working with your oncologist to find a combination that does. You may or may not lose your hair depending on the drug used. If you are going to lose your hair it is better to go ahead and shave it off when it starts falling out. The American Cancer Society has programs where they will give people a wig free. Good luck.

  5. jmq

    jmq New Member

    I wish I had something to add other than continuing prayers for you. I will try doing some research on it too. Your son sounds wonderful. I like the idea of getting second opinions of all your options too...I just know how hard that must be to face when you are still healing from the surgery!
    I hope you saw my good news posting. I want to let you know how much YOU personally gave me such inspiration and courage to face what ever was ahead. I will continue to be with you in spirit and here in our cyber family.

  6. sues1

    sues1 New Member

    I am not worried about losing my hair. Since I became down with CFIDS/Fibro......my hair has already thinned a lot. I wear wigs..or have for a short while. How nice to just out on my "hat" and go. No fuss at all. and with my achy arms I do not have to work with my hair.

    I got one that was pretty but was not meant for me. I thought of taking it to the beauty shop, so did not send it back. So I have donated it now. I never wore it and someone will benefit from it.

    So now I will be getting a false boobie......still feel sexy but I will have more to take off when I go to bed. Ha ha. My hubby tells me that he will be able to get even closer to me. I am lucky he still sees me as sexy and all.
    It helps the morale.

    But I am not very vain. USed to be. Now other things are more important. We learn as we get older on what is really important and appreciate many things even more.

    My concern right now is the CFIDS/FIBRO and the treatments.

    Blessings to everyone........Susan
  7. sues1

    sues1 New Member

    I was just thinking about checking with both of you. Then I searched for your latest postings. JMQ you must of just posted before my posting went in. 'Cause you were not on that string when I went and sent a posting.

    So things seem to be looking up for both of you. I am so happy.

    Your postings are great and I keep looking for them. I am getting sorer. Must be because it is healing and I have staples, the only stitches are holding in the drainage tubes. So I have taken a couple of pain pills. I have not used them very much, but glad I have them now! I do not like to be "under the influence". My mind is fuzzy enough! LOL. I came home from hospital on the 21st. and now have used the total of 8 pain pills. It is a security blanket to have them at hand!

    S-elaine......you inspire me and I love your attitude on life.

    JMQ......you touch my heart and make me feel so good. Thanks.

    Love, Susan
  8. sues1

    sues1 New Member

    Prickles it is great to hear from you. We make a effort to keep up our morale and we have many jokes on this. You are one strong person and keep me excited on finding a cure for us and meanwhile how to cope.

    S-elaine.......I love your zest for life also.

    Some might think I am a sicko...I really can be a lady. My teenage grandson was here and I could tell that it was bothering him. He is so sensitive and kind, but also a typical teenager.

    I told him that I ws going to get a Daisy Mae swim suit, where it has a bib top and only one strap and my vacant side would be exposed. I asked if I could be arrested after all I would look like the boys. Also told him that I will go to a beach With a sloppy blouse over it and when kids go running to the water I will stop and shriek at them not to go in the water....there are sharks...LOOK....one got me. Then I would watch them run away crying.

    There are several types of forms to wear and some have a tendency to ride up. Velcro or fishing line weights are sometimes used to keep them in place. I said I could see me shopping and see it ride up towards my shoulder. I will start slapping at it and yelling for it to behave and turn to whoever and say "I'm sorry, but I just washed it and now it is out of control" (like freshly washed hair).

    I told my one son that even with the insurance I have, this was going to cost me an arm and a leg....he added....
    and "A Breast".

    I would NEVER NEVER do these things.....but I get everyone laughing and they are able to approach the subject better. And also deal with it.

    The first time my youngest son stopped at the house I came out with a rolled up hand towel under my top, had a large boobie, and said "They gave me the wrong operation" He looked as if he did not know rather to laugh or cry and he is the joker in this family. So gradually I was able to get him to look at this differently and also told him that the love and humor will keep me going.

    S-elaine.....at this point I do not plan on getting a breast replaced. But who knows? My cancer Dr. told me, the first time I was there, that a lady that had breast cancer 7 yrs. sgo came into her office today and said she decided to get the operation. This lady is 68 yoa. (years of age).
    I loved that woman's spunk, I think it is great. But we all are different. I wondered if she was married and all. Maybe she goes to dances.

    Anyhow.....Blessings Susan