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SarahGrey's Recent CancerCompass Activity

  • SarahGrey has replied to a post on the message board

    Hi Stephen, No worries - sometimes the links just don't work.  But you can always access your messages.  Just come to the site as you normally do and then on the top right of the screen it says "My Profile, My Friends, My Notifications, About Us..." Click on My Notifications and your messages should be right there.  And then you can read and respond to people privately.  I hope this helps! Al...

    Yesterday at 10:19 PM view post
    • SarahGrey has replied to a post on the message board

      Hi Linnea, I'm sorry...  actually, it can just be everything.  The tumor(s) - if they're still there or if he's even just recovering after having them removed - they can cause excessive fatigue.  The medicines can definitely cause it - sometimes the fatigue lessens as the person gets a bit more used to them.  If not, the neuro-oncologist may adjust the doses if possible.  (antiseizure meds d...

      May 17 at 9:38 PM view post
      • SarahGrey has replied to a post on the message board

        Oh Dan, I'm so so sorry...  I'm so sorry for everything you both went through and wish you nothing but peace at this time...  GBM is such a cruel beast... Please take it one day at a time and be gentle with yourself and grieve as you need to.   Thinking of you, Sarah 

        April 29 at 7:42 PM view post
        • SarahGrey has replied to a post on the message board

          Hi Paul, Just checking if you're on Bactrim as well?  That caused my husband's platelets to plummet.  Once it was switched to another med (Mepron, maybe?) they went back up. All the best, Sarah

          April 29 at 12:08 AM view post
          • SarahGrey has replied to a post on the message board

            Hi Melanie, Ah yeah, the walker just won't work because of the balance issues and weakness.  A small transport wheelchair is probably your best bet now.  I know your house is full of stairs - that has to be so rough and my heart goes out to you guys...  One thing I thought of is maybe you should have a small bag for yourself - not really an overnight bag, but kind of.  Like a bookbag with a phon...

            April 21 at 11:12 PM view post
            • SarahGrey has replied to a post on the message board

              Hi Melanie, The one thing that comes to mind is if he doesn't have a DNR, he should get one soon.  Without one, I was told that the ambulance needs to be called and they have to do CPR...  :(    Regarding switching things like the newspaper and phone into your name - is it a rush?  There's so many other things you're dealing with now.  The newspaper won't stop coming if it's still in y...

              April 20 at 11:10 PM view post
              • SarahGrey has replied to a post on the message board

                If possible, maybe see if your mom's doc can sign her up for home hospice care (if it's available in your area).  They can help monitor her and make sure she remains comfortable.  From what you've written, it sounds like she's peaceful and that truly is a blessing.  Home hospice, if possible, can help continue and maintain that. In the meanwhile, definitely make the most of your time together.  T...

                April 20 at 11:02 PM view post
                • SarahGrey has replied to a post on the message board

                  Hello, I'm sorry for the diagnosis...  It sounds like hospice care is the best and kindest thing at this point and I wish her only peace and comfort through this time.   Regarding your question, for timing and what happens/when, please google "brain hospice timeline."  My husband and loved ones of many other people here went through basically the things mentioned and in the order mentioned.  I t...

                  April 20 at 10:58 PM view post
                  • SarahGrey has replied to a post on the message board

                    Hi Melanie, Ah yeah, that hospice place is really far...  :( I wonder if the doctor/nurse manager at the nursing home could talk to your husband's oncologist to see what they would need to care for him?  They can plan ahead maybe and get whatever meds are necessary or you can get them and give them to the doctor/nurse manager?..   That's wonderful news about the insurance covering the time in the nu...

                    April 10 at 11:21 PM view post
                    • SarahGrey has replied to a post on the message board

                      Hi Melanie, I'm so sorry...   I think you mentioned a place a little bit away where you could stay with him maybe?  A place with two-rooms where families can stay?  That's a bit of a hike, right?  I personally think that might be your better option though (if I'm remembering correctly).  Your husband probably won't be there too long so if you guys can stay there it might be ideal considerin...

                      April 09 at 10:06 PM view post
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                      About SarahGrey

                      Caregiver
                      Brain Cancer

                      My husband was diagnosed with inoperable GBM (temporal lobe) in May, 2012
                      - Whole brain radiation
                      - Temodar (discontinued in Jan, 2013)
                      - Avastin
                      - Restarted Temodar on a daily, low dose
                      - Passed to Heaven after a 13 month battle...

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