| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. You will find lots of assistance and answers to your questions. Dont be afraid to ask them. There is tons of info on the main OCF pages. You will also get lots of support to help guide you as the caregiver.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Di-It was important for me to go with my husband to all of his appointments. Very often he wouldn't remember much of what the doctor said. I used this site often to get the best info to ask the doctors about and felt so much more informed. I've had some of the best discussions with the doctors armed with the info-some even told me that the internet was a pretty good source of information. Also I found it helpful to go directly to the website of any of the drugs he was given. They have a much more inclusive list of side effects. Good luck and keep coming back here-these people are amazing and the best lifelines you could ever have.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Oct 2008 Posts: 8 Member | | OP Member
Joined: Oct 2008 Posts: 8 | Hi Sue,
Thanks for the greeting. I definitely would like to be there for all his appointments. It gets a little tricky with working full time. We both have fairly supportive employers and some accumlated sick/vacation time (him more than me thankfully!) but the paychecks need to continue, if you know what I mean.
Is it funny that he doesn't want to know about the side effects? I, of course, want to know everything! We operate so differently but so well together! Of course, he knows enough to stay safe but he doesn't want to dwell on them.
And you are so very correct about this website. The dentist that Adam saw who works exclusively with radiation patients recommended this website. Pretty good results.
--Di
Di CG to husband, Adam (30 yrs old). SCC of left anterior tongue, T1N0M0. DX 10/27/08. Partial glossectomy 11/5/08. Carboplatin/Taxol (x3) begins 12/17/08. Radiation (x35) concurrent w/ Cisplatin/Erbitux to begin in January. And raising a 3.5 year old daughter! Yikes!
| | | | | Joined: Oct 2008 Posts: 8 Member | | OP Member
Joined: Oct 2008 Posts: 8 | Hi Rita,
Allie, my daughter is madly in love with a little boy from her preschool. He is pretty darn cute, I must say. Though when asked she'll say she's marrying Daddy. I really do love this age, don't you?
How are your kiddos handling all this? Have they participated in any support groups for kids? There is a group for kids at our CCC but I need to do some investigating to see if they are equipped to deal with preschool-age kiddos.
--Di
Di CG to husband, Adam (30 yrs old). SCC of left anterior tongue, T1N0M0. DX 10/27/08. Partial glossectomy 11/5/08. Carboplatin/Taxol (x3) begins 12/17/08. Radiation (x35) concurrent w/ Cisplatin/Erbitux to begin in January. And raising a 3.5 year old daughter! Yikes!
| | | | | Joined: Oct 2008 Posts: 8 Member | | OP Member
Joined: Oct 2008 Posts: 8 | Hi Liz,
I am so very sorry for your loss. I am speakless with how quickly Robin's cancer progressed. This truly is a horrid disease.
--Di
Di CG to husband, Adam (30 yrs old). SCC of left anterior tongue, T1N0M0. DX 10/27/08. Partial glossectomy 11/5/08. Carboplatin/Taxol (x3) begins 12/17/08. Radiation (x35) concurrent w/ Cisplatin/Erbitux to begin in January. And raising a 3.5 year old daughter! Yikes!
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | yes this age (3) is great ... they are amazing and downright funny at this stage of life.
No, we have not done the support group route. We have a close family unit and some awesome close friends, which have kicked in and this has worked for us... though I am never opposed to such options, it just has nto been needed, at least presently. The three year old really doesn't understand what has went on, other than knowing mommy hasn't felt well at times. She is so sweet in this manner too that it is warming when you feel down.
Speaking of wee ones, i need to run and get her to sleep now so best wishes and talk to you soon
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | [quote=azcallin]No, we have not done the support group route.[/quote]
Hey, keep in mind that THIS is a support group, composed of people who have either been there or directly supported people who have been there. Hugs from the family, info and encouragement from OCF!!
I personally found it very helpful during my divorce to participate in alt.support.divorce.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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