S. Jane Posted April 26, 2004 Share Posted April 26, 2004 My Dad, Chick, has asked me to attend his doctor's appointment. This is the appointment after four series of chemo/radiation and repeated PET/CAT scans etc. and the PCI decision. He believes with all the research I've done, that I probably will be able to come up with questions that he won't remember to ask. I'm scared to disappoint him. I'm really afraid I'm going to cry (though my Mom said she would kick me if I did ). To top it off, I think my mind is mush, and I'm re-reading all the information and feel like I'm not comprehending it as well. Actually, this might be the first time I've posted in this section, (so, HI!) I usually post in SCLC, but thought there might be words of wisdom here for this one. Thanks, Jane Quote Link to comment Share on other sites More sharing options...
Snowflake Posted April 26, 2004 Share Posted April 26, 2004 Jane, Write your questions DOWN or you WILL forget them. Write the answers down, too. If you have questions on particular treatments, make sure you have the treatments listed correctly... How wonderful that your father is leaning on you at this time, my father is a bit too personal to lean on me.... Hope it's all good news! Becky Quote Link to comment Share on other sites More sharing options...
john Posted April 26, 2004 Share Posted April 26, 2004 Some people suggest taking a take recorder You might want to ask about CPT-11 when combined with a platinum based chemo it is supposed to work really well for SCLC The two designated NCI cancer centers in Mass are: You can always get a 2nd opinion also MASSACHUSETTS Edward J. Benz, Jr., M.D. Director Dana-Farber/Harvard Cancer Center Dana-Farber Cancer Institute 44 Binney Street, Rm. 1628 Boston, Massachusetts 02115 Tel: 617/632-4266 Fax: 617/632-2161 (Comprehensive Cancer Center) Tyler Jacks, Ph.D. Director Center for Cancer Research Massachusetts Institute of Technology 77 Massachusetts Avenue, Room E17-110 Cambridge, Massachusetts 02139-4307 Tel: 617/253-8511 Fax: 617/253-0262 (Cancer Center) Quote Link to comment Share on other sites More sharing options...
karenb Posted April 27, 2004 Share Posted April 27, 2004 I totally agree w/Katie on this. Bring a tape recorder and write some notes down before you go in. I had to go to my dad's last three appointments here lately by urging from my sisters and mom because I had all this information too. I was literally frantic on the days leading up to these appointments. I couldn't eat etc.....because I was afraid of bad news or negativity from the doctors. Well we did indeed get alot of negativity and I thought I would just crumble but I didn't. It was completely business-like while in the office w/him. As stated by Katie when I got in my car to go home (I live 2hrs away from my parents) I sobbed. Somehow your desire to help them and keep things in check just takes over when you are in that room w/them. Good luck and get prepared!!!!! Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted April 27, 2004 Share Posted April 27, 2004 Great suggestions! Jane - don't worry, you'll be fine - this is so important you'll focus and not get emotional. That will come later - ha! I think it is wonderful your father is asking for your help. A strong support system, especially family, is very helpful in fighting cancer. And being involved will help you, too, because doesn't it always feel better to feel like you're actually doing something about it? Am eager to hear the results of Wednesday's appt. God Bless, Karen C. (p.s. this is NOT me in the photo, by the way, but Dave semi-dressed in drag!!! I'm not THAT ugly!) Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 27, 2004 Share Posted April 27, 2004 Jane, that is great that you will go with your dad. You will be a big help to him. It is great that he wants you there. Try not to worry about the specifics -- just go with the flow and be present. Don Quote Link to comment Share on other sites More sharing options...
Connie B Posted April 27, 2004 Share Posted April 27, 2004 Dear Jane, When I started my journey 9 years ago I had my husband, son, daughter, son-in-law and a TAPE RECORDER in the doctor's room with all of us. When we left that office after my first 5 appointments, NOT ONE OF US HEARD the same things come out of that doctor's mouth. UNTIL we listened to the tape recorder. It's a GOD SENT! GET ONE AND TAKE IT WITH YOU!!! You'll do just fine my dear being there with your dad. Wishing good things and we'll be waiting to hear how it went. Quote Link to comment Share on other sites More sharing options...
Guest KellyB Posted April 27, 2004 Share Posted April 27, 2004 Jane, I can relate to your fears, being one of 3 sisters, who all attend every onc appt. It is tough and we write notes and write all of our questions too. I never thought of the tape recorder, good idea. I never wanted to go anticipating the bad news, for a year straight it seems it's all we got! But here we are 15 months later and he is still with us. Your Dad needs another set of ears. Thankfully you can be there for him. Good Luck. Kelly Quote Link to comment Share on other sites More sharing options...
Margaret Posted April 27, 2004 Share Posted April 27, 2004 We have an obvious consenus here...write and/or record the conference and also have your questions written down in advance and have information available, such as medications, trials you are interested in, etc. There have been times when I have teared up during my appointments and my doctors have always responded with "you wouldn't be human if this didn't effect you...that's why we always have this box of tissues in our rooms." Course the tissues are usually cheap and like sandpaper, so don't over use them. I always hope not to cry because it interfers with my ability to absorb the information and to make decisions, but there is nothing wrong with it. Having said that, I'm praying for you in your role as advocate for your Dad. It is always easier when there is someone else there, espcially to ask the questions. Margaret Quote Link to comment Share on other sites More sharing options...
S. Jane Posted April 28, 2004 Author Share Posted April 28, 2004 Wow...I'm relieved by all this support! Yes, will definately do the tape recorder! I'm bringing boxes of tissues in the car and will leave them there until after. I know I can do this. I have a lot of information and questions, and I'm feeling pretty strong that my Dad needs this. He went over his questions with me, and I felt like he was leaving a lot of things out. My mother will be there too, and between the two of us, we'll make sure Dad is informed enough to make the necessary decisions. If the situation warrants, I'll be pushing for a second opinion. I'll report in tomorrow. Jane Quote Link to comment Share on other sites More sharing options...
S. Jane Posted April 28, 2004 Author Share Posted April 28, 2004 Have to comment on the pictures of you all. Nice to put faces with the names. Someday hope to figure out how to do it so you all can meet me and my Dad. What can I say about David C??? Interesting guy? Love the pic! Jane Quote Link to comment Share on other sites More sharing options...
stand4hope Posted April 28, 2004 Share Posted April 28, 2004 Jane, Send your picture to Rick. He will put it up for you. Peggy Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted April 29, 2004 Share Posted April 29, 2004 Jane - yep, he's an interesting guy, to say the least! He was "dared" by someone on the board to dress in drag in exchange for a donation to the website. This head shot is his preliminary photo. He hasn't gotten around to dressing in full drag yet. What everyone must know about David C is that nothing happens very fast with him. It's taken me eleven years to accept that fact (BeckyCW is his sister and I think she can verify this). Please let us know how the doctor appt went! Karen C. Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted May 4, 2004 Share Posted May 4, 2004 Well, as you can tell from the fact that Karen posted on April 29th and I'm answering on May 3rd... not doing anything real fast kinda runs in our family! But otherwise, we're real lovable folks. BeckyCW P.S. David, it IS getting to be rather a long time since all those donations were pledged. Time to get out the nylons and high heels, bro! Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted May 4, 2004 Share Posted May 4, 2004 Well, as you can tell from the fact that Karen posted on April 29th and I'm answering on May 3rd... not doing anything real fast kinda runs in our family! But otherwise, we're real lovable folks. BeckyCW P.S. David, it IS getting to be rather a long time since all those donations were pledged. Time to get out the nylons and high heels, bro! Quote Link to comment Share on other sites More sharing options...
S. Jane Posted May 4, 2004 Author Share Posted May 4, 2004 I'll pledge a donation! It has been about a year, it's time. But, I would think he'd have to do the full dress this time. Jane Quote Link to comment Share on other sites More sharing options...
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