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concerned for Scotty Tom

Just in case Scotty Tom, like me, reads this board without posting (only because things are too indescribably bad), I just hope things might have improved for him. Without wanting to pry, or further breach his privacy, I just wanted him to know I've been genuinely concerned for him for months and sending (agnostic) prayers and best wishes his way, hope they've been reaching him all the way from Adelaide, South Australia. (Hugs to everyone else struggling, too - ie everyone, sigh)
Coralie (((  )))

Comments

  • Ed1937
    Ed1937 Member Posts: 5,091
    Sixth Anniversary 2500 Comments 500 Likes 250 Care Reactions
    Member

    Coralie! I've been wondering how you were doing. Are things a little (or a lot) better now? It's good to see you posting again.

    I haven't seen anything from Scotty Tom for a while. Hope things are better for both of you.

  • CJ1961
    CJ1961 Member Posts: 5
    Third Anniversary First Comment
    Member
    Thanks sincerely Ed, you are one of the main reasons I read here near daily, your kindness and compassion reverberates way further than you might realise.
    Things here still bleak, I need more surgery for bowel obstructions, but more importantly, after a decade of no diagnosis, we've just learned after amyloid PET scan that DH has been misdiagnosed with frontal variant AD last 3 years when it's actually a rare type of FTD- with major genetic implications for our kids getting EO dementia even earlier than their Dad (52), so I'm freaking out. Referred for genetic counselling and mega expensive tests to be sent overseas (likely to USA) with 6 mth delay re likely mutation that fits his unusual clinical features exactly (C9orf72 mutation, sigh) Intend to start another thread to vent and seek opinions, but everything too hard for now. But cancer in remission (for now) and only oral chemotherapy (horrid side effects) since November. Seeing both a shrink and a psychologist, I know you advocate for that when needed, so thank you for that as well as for your kind reply. I too really hope Scotty Tom has had some rainbows amidst his storms.
    (((Ed))), Coralie 
  • Ed1937
    Ed1937 Member Posts: 5,091
    Sixth Anniversary 2500 Comments 500 Likes 250 Care Reactions
    Member
    Coralie, I'm sorry the news is not better than that. The fact that the cancer is now in remission is great to hear. Please know that you are in thoughts and prayer from several of our members. Check back in every so often to let us know how things are going for you.
  • littleme
    littleme Member Posts: 70
    Legacy Membership 10 Comments 5 Care Reactions 5 Likes
    Member

    Coralie, I have been wondering how things are with you. So glad the cancer is n remission, you definitely need a break!

    No change for me, but DH is declining more rapidly lately.

    (((Coralie)))

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more