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Joined: Mar 2002
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OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
OK, the new forum is up as has been suggested. While I understand everyone's desire for this, I hope that those that post here, while in a different kind of personal battle, will still visit the other forums. All who have been through this battle as caregivers are rich sources of important information that may help a newbie find their way.

Please advise if you would like the name of the forum changed or anything about its description altered. It was a difficult one to write, and I may not have done it well.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Joined: Jan 2009
Posts: 1,844
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2009
Posts: 1,844
I love our Caregiver Warriors, in my opinion you are all angels of mercy. Everyday I'm blown away at the depth of love and compassion even in the face of this horrible disease. I'm stronger having known all of you on these forums and am thankful for each and everyone of you. You truly make a difference in peoples lives...you have mine.



Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
Joined: Jan 2011
Posts: 123
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Senior Member (100+ posts)

Joined: Jan 2011
Posts: 123
Thank you for this. I always hate being a reminder of the bad so it is nice to keep it in it's own spot.


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
Joined: Sep 2009
Posts: 177
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Sep 2009
Posts: 177
I am currently dealing with a 16 yr old that for whatever reason has decided to try tabaco products. So I am desperately trying to find any thing that that was will help him see the reality of this. Youm would think that my cancer story which was horrible would have been enough.


Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

Joined: Jan 2011
Posts: 123
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Senior Member (100+ posts)

Joined: Jan 2011
Posts: 123
I am sorry Wendy. I have a 2 year old abd dread the teenager years! Her father smoked and drank too much for years before we met. I really hope these are not traits she has inherited!


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
Joined: Apr 2009
Posts: 329
Platinum Member (300+ posts)
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Platinum Member (300+ posts)

Joined: Apr 2009
Posts: 329
Thank you for the forum.

I lost my Husband to Stage IV Throat Cancer 13 years ago. There isn't a day that goes by that I don't think about him or talk to him.

At that time we didn't know about Cancer Centers it was 18 months of pure hell. After he passed I thought to myself I never want to go through this again and here I am with tongue cancer. I wish we had known about Cancer Centers if so he might still be with me.

He was my friend, lover and the best husband who thought of his family first. Our grown children and their families followed us.

The sad thing is he retired after 33 years with General Motors, we moved to Florida so he could golf year round, built our retirement home, 3 years later he was gone.

I have beaten my head against the wall many times after finding out about Cancer Centers, we were so close to one and didn't know it.

I know exactly what you all (Caregivers) have gone through and feel. Don't think they didn't know we did all we could for them.

God Bless you all.
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: May 2012
Posts: 114
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: May 2012
Posts: 114
Hi Connie,

I'm so sorry you lost your husband and then had to battle this dreadful disease yourself. You truly must be an amazingly strong person to come through it all.

Being one of my moms caregivers was the single most tragic but rewarding experiences of my life. It was incredibly painful to watch her physical and emotional struggle, and share that with her, but I wouldn't hesitate to do it all over again... and as hard as it was, if I had the chance I would spend my life caring for her. She and I were kindred souls, practically twins, no one else on earth was more like me than her and nobody else could make me feel whole and at home like her. I struggle every day trying to figure out how to live my life without her.

I hope you had a caregiver throughout your battle who was as loving and caring as you were with your husband.


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
Joined: Aug 2010
Posts: 75
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2010
Posts: 75
I come back to OCF when I'm having a hard time. It's a haven for some reason. It's been 7 months, I miss him so much. Thank you for this forum.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
Joined: May 2012
Posts: 114
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: May 2012
Posts: 114
Hi Gerri,

So glad to see you drop by! I'm sorry you lost your husband, especially after fighting like heck to beat it. This disease is totally unforgiving and my heart still aches whenever I think about what my mom and other patients have had to endure. It also aches for the other caregivers that have had to experience what it feels like to watch a loved one suffer and pass without being able to do anything to stop it.

I am still struggling to find a way to live without my mom. I know time will help and life will eventually return to a new normal, but I don't think I'm ready for that yet... I don't want a new normal, I want my old normal, the normal where she still was.

I started seeing a therapist last week, I think it's going to be good. I have also started exercising again and eating better. Any little thing I can do that is good for me rather than self destructive (like overeating and drinking). I also went away with some friends over Memorial Day weekend which was a much needed vacation from life. What are some things you have found helped you through these past 7 months?


Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
Joined: Aug 2010
Posts: 75
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2010
Posts: 75
Staying busy is my best coping method. I keep adding to my 'to do list' so there's no end of things that need done. I'm always thinking of "my firsts without Jim", seems like they are never ending, but I have learned I can do things I would never have imagined doing. My son graduated from high school last month, I was determined to make that a celebration for him even though Jim wasn't with us and it was. I also recently went on Alaska cruise with my parents and sister. I agree with you - that was a much needed vacation! Trying to move on is the hardest task.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
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