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Joined: May 2012
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Hi All,

I'm not looking for this thread to be a debbie downer at all, but I thought it might be nice to create a place for those of us caregivers who have lost a loved one to share stories, cry, vent, and remember...

I think the OCF forums are amazing, including everyone in it. I wish I had discovered it before my mom passed away. But sometimes I am afraid to talk about what happened to my mom because I don't want to scare others who are just learning of a diagnosis, going into surgery, starting treatment, dealing with a recurrence, and/or are still fighting, both patients and caregivers. Every case is different of course so we shouldn't compare, but I think the other threads are a great place to be upbeat, encouraging, and motivating. I do plan to continue contributing to those threads, but I wanted to give those of us who are grieving (new and old) a place to mourn together.

I know I need this, so I figure someone else out there might need it too... <3 <3 <3




Last edited by aimlee311; 05-31-2012 05:47 AM.

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
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Thank you for posting this. I know I am going to need it and it is nice to know it is here. Like you I think OCF forums are great and I have learned a lot. I hope you are doing ok.

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Thanks, Amy! I hope you don't need to post here SOON, but it's here when if/you need it smile Hang in there lady, I hope YOU are doing ok. And even if you think you aren't, you will be...

Hugs!


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
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Thanks for posting this. I am coming up on the one year anniversary and never would have imagined getting through it back then. I am trying to figure out what to do on the actual day...I have taken the day off and want to do something special with Morgan but cannot wrap my head around what that should be. Anyone have any ideas to share?


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
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Agreed, I miss y'all on these boards, but find it hard to share the new struggles ... There is always the friends board I suppose..
Big big hugs to you Jill.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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I would be happy to add a left behind forum if people really want it. While I don't share your concerns about what those in treatment might think, I completely understand the position. Truth is that no one gets a cancer diagnosis without considering that this disease is a killer with them in their sights. The reality is that too many people are lost to this disease. I don't think there is anyway to sugar coat or hide that.

But the emotional burden of any loss can be helped significantly by talking with others, and particularly with those that have had a similar experience. If you want this I will have Chester add the forum this weekend.


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.
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Thanks, Brian! I support whatever you think is appropriate smile

This place has been a safe haven for me since my mom passed, not able to really confide in or share my grief with even my family members. Being here has given me that understanding shoulder to cry on and the words of encouragement that only my mom could give me.


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
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Hi Jill,

I am still pretty new at this whole mourning thing, I can't imagine what a year of this is like, just hitting the one month mark a couple weeks ago was a killer for me. I think it's great that you are going to take the day off and do something special. Is there anything in particular that you and Ken enjoyed doing together? A favorite restaurant or park/beach you used to go to? Maybe if the weather is nice you could have a picnic and share a couple of funny or sweet stories? It might also be nice to do something nice for yourselves, like a pamper treatment... maybe a pedicure or massage.

My family and I spent our summers on Cape Cod, in Wellfleet specifically, which is like a second home to me. It was my mom's favorite place on earth and it saddens me that she didn't get a chance to get back there more recently. When I was a kid, she and I were always the first ones up in the morning so on vacation we would pack breakfast and go watch the sunrise at least once a year. We'd sit on top of the dunes with our bowls of cereal and watch the sun come up over the Atlantic... one of my most treasured memories. I think this is what I will do on her first anniversary...


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
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I am in two minds about putting up a "loved and remembered" category.

On one hand I don't want constant reminders of the people who have fought so hard and still not made it and on the other, those people deserve to be recognised and remembered.

I suppose a separate category would allow people the choice to read and post or avoid.

For myself, I am still too fearful to read the "recurrence" category on a regular basis let alone a "loved and remembered" category but think it would be unfair to deny others just because I am personally averse or fearful.



Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Hi Karen,

I totally understand your position, and that is actually exactly why I suggested a seperate category, so that those of us who have lost have a place to express these feelings without causing fear or anxiety in those who are so bravely fighting. I of course respect whatever everyone thinks is best. I want nothing more than to be encouraging and supportive here and in any other way that I can be, because that is what me and my mom needed during our toughest times, but some days it just feels good to share the grief that only some of us know...


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
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