Loading...

SarahGrey's Recent CancerCompass Activity

  • 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
                  • SarahGrey has replied to a post on the message board

                    Hi Dan, I'm sorry to hear things have progressed so much... My husband had Avastin with Temodar and the combo shrunk his tumors a bit - for a few months.  Then he was taken off the Temodar because of blood counts (which I actually think was from the Bactrim and not the Temodar...).  Anyway, after that, the Avastin alone didn't work and... As for side effects, he really had none other than fatigue - which...

                    April 01 at 10:04 PM view post
                    • SarahGrey has replied to a post on the message board

                      I'm so sorry...   The best thing is to google "brain hospice timeline."  The timing of things is off a little dependent on location of tumor(s) and so many other health factors - but it's generally close to what many people here reported.  The order of things is pretty accurate as well...  (helps you get prepared and be less scared as things happen). But yes, in general it will be days once they...

                      March 29 at 12:37 AM view post
                      Loading...
                      Load more activity
                      Loading more activity

                      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...

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.