CancerCompass message board discussion started by Marmie on 12/1/2005 http://www.cancercompass.com/message-board/message/all,3634,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 Marmie Thu, 01 Dec 2005 00:00:00 GMT 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 Astarte Mon, 05 Dec 2005 00:00:00 GMT 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 Marmie Mon, 05 Dec 2005 00:00:00 GMT 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 Marmie Thu, 15 Dec 2005 00:00:00 GMT 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 Astarte Fri, 16 Dec 2005 00:00:00 GMT 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 Marmie Tue, 20 Dec 2005 00:00:00 GMT 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) Astarte Fri, 23 Dec 2005 00:00:00 GMT