Astarte

Hi Astarte, I am so glad to hear from you. I either missed your post or you are right, it got chewed up in the system! Anyway, glad to hear that your boyfriend is feeling better now that radiation is behind him. It really does take several months to recover. But my husband is much like your boyfriend, in that he feels pretty lousy the week of Temodar and the week after. It breaks my heart that he sometimes feels that he only has two 'relatively good' weeks a month. This darn treatment is worse than the disease sometimes. Please keep me posted on your boyfriend's progress, I will watch for you. Take care Astarte.

Patty

Hi Patty,

Thank you for your posting, Its so good to know
there is someone out there I can talk to. Dan
has had his scan date !! 13th Dec. Wish I
could go with him, the Dr's here don't tell you
much unless you ask the right questions so if
you don't ask your left in the dark !!! I cant
be his caregiver!!! Im just the won who loves
him and does her best to answer his questions
when he feels strong and brave enough to ask.

He's very down this week and I'm sure they gave
him the wrong dose for his steroids, 8mgs a day
for 3 days!!!! only 2 mgs a day for a week last
time then 1mg for a week!!

Also does Russ complain of fuzzy heads during
chemo week? do you think this is chemo or
steroids?

Thank you, my thoughts are with you both.

Astarte

Hi Astarte, I will be keeping you in my thoughts and prayers on the 13th! Let me know how things go. Yes Russ does complain of fuzzy head during treatment. I think he is so miserable that 'everything' is fuzzy and hurting. He has alot of muscle pain along with everything else. It is so hard to watch him go through this, and I am sure you understand as well. Please take care, and keep in touch.

Patty

Hi Astarte, I was thinking about you today and wondering how Dan's scan went. Please let me know if you have time. Take care.

Patty

Hi Patty,

Thank you for keeping us in your thoughts, its some times
hard to find words to put in an email/on paper, But I do read
the posts every day, and keep you all in my thoughts.

Dan had his 3 monthly check up with his surgeon last week
and it went well, they are very pleased with him.

He had the scan this Tuesday, unfortunately they don’t give the
results of that until his next round of chemo in the new year
and only then if he see's his chemo consultant, hopefully she
wont be on vacation!! They have told him that the reason for
the scan is to compare it with the final scan they will do at the
end of his 6 months of chemo treatment, unlike the states they
do not mention any real implication and what the scans can
show up. Dan has no idea about what’s going on, he just does
as he is told!! He knows I have researched all I can and does
ask me when he wants to know something, but I wont tell him
anything unless he asks. (I work for a university as an
environmental researcher) His carer knows nothing and doesn't
bother to find out or ask. She sometimes asks the Dr's
questions but never questions those answers, so I have to rely
on what he tells me and from what I've learnt from these
pages! I do go to the hospital with him when his carer can’t or
doesn't want to go but I can’t go into the consulting room with
him!! Frustration!

Anyway after the last round of Temodar (1 Dec -5 Dec) 11th
day of recovery, he is still feeling very down and depressed
with the fuzzy head thing going on and doesn't feel like doing
anything, maybe its just the time of year and all the time he
has to sit and think!! I don’t know, but I worry about the fuzzy
head!

On top of that there is talk that hospital where he has his
treatment has overspent its budgets by millions this year, don’t
know what that will mean for future treatment!!

I have a feeling Russ has his Temodar around the same time as
Dan, how is he feeling ? Does he feel about the same everytime
he has treatment or has it got worse as treatment goes on? just
wondered!!

Patty, how are you???

I'd like to wish you all Seasons Greetings your in my thoughts
and prayers.

A special hug to you all

Astarte

Oh Astarte, that must be so hard having to wait to know the results of Dan's scans. Fortunately when Russ has his Dr. appt., he goes an hour early for the MRI and then the doctor has the results an hour later during his appointment. I can't even imagine having to wait, it must be so nervewracking and frustrating. Russ is still struggling with treatment, but he seemed to bounce back faster this time. He is doing pretty well this week. He continues to work full time, I am not sure how. He says it keeps his mind off of things, and I guess it must be true. I hope you will be able to relax and enjoy the Holiday. I plan to. I am feeling rather tired and drained. I run an entire trucking company myself on top of everything else, so the stress level is off the charts sometimes. Sometimes I just want to run away!! :)) Take care and please keep me updated on how things are going.

Love,
Patty

Oh Patty, thank you for keeping in touch, this is my last day at
work im not on line at home, I'm also hoping you are maybe
reading between the lines re. Dans carer and why I cant be with
him!!!!!!! its now the holiday period here and I wont even get to
hear much by phone for a couple of weeks or until his "carer"
goes back to work. Another xmas and I feel so alone without
him.

Dans been back to work this week and there is no doubt that
he to feels better doing something and being with people and
not at home sitting in a chair thinking!!!!!! But going back to
work means I see less of him, hey ho onwards and upwards.

Im not sure Dan understands the implications of what the scan
results could say!! His carer has done nothing to find out
about GBM, she doesn't even cook real fresh food, its all
processed, you'd think a teacher/partner would want to do
more!

Dans next treatment starts 28th Dec

wishing you seasons greetings and all we can hope for in the
new year!!

Love to you Both Patty
Paula (astarte, 49yrs in Jan, divorced 5 years, 2 boys 21/23)