Really hard topic

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Jachut
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Re: Really hard topic

Postby Jachut » Mon Sep 29, 2014 12:09 am

Deleted - sorry, misread the question.

jacekica
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Re: Really hard topic

Postby jacekica » Mon Sep 29, 2014 1:56 am

All I wish is human touch and someone to talk and sit beside me - and I know it will not be. Main thing is I am pain free and not depending for hygiene and for example diapers.
It will be nice if here we have hospice, but we don't have them, so I pray every day I stay on my feet till the end of this hard journey.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

Lisahopes
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Re: Really hard topic

Postby Lisahopes » Mon Sep 29, 2014 1:57 am

I totally understand where you are coming from Bev. Even at this moment, I wish we knew more about Marco from a family member perhaps. But I worry that it is more about me than what he needs.

From having been with my mom through her journey and her death, I realise that there comes a time when the dying are not interested in the world that is now so valuable to them. It is a kind of letting go process. Their world shrinks until only one or two important people count and eventually there is no reaction or ability to respond to anyone. I do not think that anyone whose time comes needs anything from the board. But the board perhaps needs something from them? Apologise if this sounds harsh but it is my view on my selfishness only.
Daughter to Mom, 65, Stage IV with mets to liver, lungs and peri.
Dx 2006, Stage II.
Regular check October 2011, Stage IV established.
She has had Oxi, Folfox and Xeloda, now Avastin.
Progression.
Mom died on April 5th 2013.

Ron50
Posts: 667
Joined: Fri Feb 10, 2006 7:04 pm

Re: Really hard topic

Postby Ron50 » Mon Sep 29, 2014 6:36 am

I believe I knew what my friends wanted when they died. I did not act out what I thought they wanted , I had a connection with them and we were just ourselves to the end. Is that what I want at the end. I don't think so. What I do unto others I don't particularly want done unto me. I really have fought all of my battles alone. Even now I live alone and in truth I really am alone. I don't think I want it any other way. When I finally reach the end I won't be advertising it nor asking for help from anyone least of all my family. I would really like to remain anonymous. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

NWgirl
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Location: Battle Ground, Washington

Re: Really hard topic

Postby NWgirl » Mon Sep 29, 2014 6:40 am

Lisahopes wrote:
From having been with my mom through her journey and her death, I realise that there comes a time when the dying are not interested in the world that is now so valuable to them. It is a kind of letting go process. Their world shrinks until only one or two important people count and eventually there is no reaction or ability to respond to anyone. I do not think that anyone whose time comes needs anything from the board. But the board perhaps needs something from them? Apologise if this sounds harsh but it is my view on my selfishness only.


I kind of envision this sort of thing happening with me. Right now the board is invaluable to me. But I imagine the time will come when I let even this wonderful group go - as part of the letting go and dying process. I know Jaynee (weisssoccermom) will stay in touch and keep everyone here updated. I don't want anyone to have to wonder what happened, so I trust she will keep people informed as necessary and be my liaison. But before I have that final withdrawal, just knowing you all are HERE, as you have been for almost 7 years now; that means the world to me.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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dianetavegia
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Re: Really hard topic

Postby dianetavegia » Mon Sep 29, 2014 6:57 am

I would want my CC friends to continue to educate people on the different outcomes between RFA and surgery with curable intent. It seems we need to speak up and speak out because onc's are not doing that and so few, I think it's still just over 20%, of people with liver mets are told of the option or offered the option of surgery with curative intent. Now, that is based on old stats.

Also, I would want PRAYERS for a peace filled and pain controlled passing. It's very important to me NOT to traumatize my family at the end of my life. 'Death in the Civil War' was on the History Channel last year and it talked about how many people died young and how death was expected at a young age. People were constantly planning their death. What to be wearing (that new dress I just got for Martha's tea party), did they want mourners? Did they want music playing? Would they be in their bed or the chaise lounge by the big window so they could overlook their property? They wanted a GOOD DEATH. That term was used over and over. I would ask for prayers that God grant me a 'good death' that would not haunt my family for the rest of their days.

If someone were to come here and ask what I might have said I prefered, I would hope that you'd refer them to the article someone posted last year on 'How Doctors Die'. I've posted it in a note on my Facebook page and freaked out a lot of people and I've saved it in my documents. I don't want to be kept alive with chemo just for the sake of breathing. I want to go peacefully into my Savior's arms.

It's not death that I fear...... it's illness and the trauma it brings our families. If it takes a boatload of morphine to keep me from crying out in pain but that morphine means I can no longer communicate, so be it. I will have said all I needed to say long before it gets to that point. I want to die as my 98 year old grandmother did and just slow down over a few days until she dozed off and never woke this side of heaven. She had no illness other than old age and I hope the same will someday be said of me. She just was gone........
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Hall0731
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Facebook Username: Teresa Hall
Location: Spring, Tx ( right outside Houston)

Re: Really hard topic

Postby Hall0731 » Mon Sep 29, 2014 9:29 am

Funny how my husband and I were talking about this this past weekend. He is not wanting to have these conversations. In his eyes, it is like I am giving up. I am NED right now, don't know for how long. 3 month scan is this weekend. Praying it continues. I have written down all the passwords to everthing that I sign on to. I have told him where our "money" is lol. Can tell I am the finance person in this marriage. I have told him to please update y'all should something happen. I think comforting messages to me and my husband would help. People in the area to help out with my children. I hope the day never comes, but with this disease you never know.


Teresa
Dx 7/12 stage 3
8/13 1 lung met & 5 liver mets
1/14 2 sided liver wedge resection
3/14 lung wedge resection
10/14 It's back. 1 liver lesion
2nd liver resect. 1/5/15 Clean
5/22/15 back again 5-10 lung mets

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elise
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Location: Ontario (Canada)

Re: Really hard topic

Postby elise » Mon Sep 29, 2014 11:05 am

I love the postcard idea.

I would love them filled with cartoons!

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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Frenchie's Wife
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Location: Alberta, Canada

Re: Really hard topic

Postby Frenchie's Wife » Mon Sep 29, 2014 6:19 pm

I want to die peacefully in my sleep like my grandpa. Not like the other four people in his car !! (Sorry, my sic humor)
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

sjring
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Location: Philadelphia, PA

Re: Really hard topic

Postby sjring » Thu Oct 02, 2014 4:47 am

I've actually had to think about this subject for a couple of days, and my wife and I sort of had a discussion around this subject last night, partially from my thinking about this thread and partially that yesterday was the 1-year anniversary of my first meeting with my oncologist, and the words "Not Curable"; "Controllable"; and "Palliative" were broached along with a lot of statistics. But as we all know 86.67325% of statistics are made up.

I see 3 possible scenarios for passing. 1) The cancer ultimately breaks through chemo (or whatever other treatment follows) and the disease gets me. 2) The cardio toxicity of the chemo drugs catch up with me (because I have been told that basically ending chemo is not in my future) and cardiac disease is the main cause of death in male members of my family, or 3) as a diabetic, with rather variable blood glucose readings (especially after the steroid premed before chemo), I throw a clot which either causes a heart attack or I stroke out. The last 2 would be the quick ways to go, and I honestly have no idea which of the three is the better way, so my personal prayers are that I'm ok with what ever the universe (or deity of you choosing) has in store for me. My wife's preference is #1. My hope is that whichever way it is it doesn't happen for a long time. No male along my father's blood line has lived to see their grandchildren. My grandfather switched off at age 59 and my father essentially they same way at age 60. I have two teenagers, 13 (DD) and 17 (DS), and I have no intent to rushing either into having children of their own.

I've heard of palliative sedation. It was offered to Marco, or so I read, and it was used on my grandmother (although they didn't specifically use that term, they said it was antihistamines to make her breath easier and morphine for pain- either way the effect was the same). I don't know if that's for me or not, I guess time will tell.

I'm in fairly good shape at the moment, not declared NED but the one remaining liver met (of the original 10+) is slowly shrinking, the lymph nodes look resolved and there's no more visible stranding from the colon. No clue what's happening inside the colon, but I'm told that responds better to the chemo than the mets.

But I guess I've started rambling. What would I want from all of you as support? I'm all in favor of prayers from y'all. I don't know if they help, but there's no evidence they hurt as well. Don't worry about swinging any poultry, but if you make a really good matzoth ball soup.....

What I would want more is support for my wife, if she should choose to turn to it here. Right now she cannot stand the thought of looking at this site, but has instead turned to her faith. I have asked her to at least leave a note on this site and let people know "when it happens", I started using a password management program and she has the master password.
50 YO Husband & father of 2 teenagers.
DX 9/9/13 Stage 4 cc (at age 48)
16 Rounds FOLFOX + Avastin (Oct-13 to May-14)
Maintenance chemo - Avastin & 5-FU infusions (Jun-14 to Jul-15)
Jul-15: Mets to lymph nodes, resuming FOLFOX
Sep-15: MRI showed stability, back to maintenance chemo.

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Amy14760
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Location: Stuttgart Germany / Western NY

Re: Really hard topic

Postby Amy14760 » Thu Oct 02, 2014 3:50 pm

Yes we are a family and I hate when one of our members just slips away. My friend Paul, "prtza" from South Africa just slipped away and I didn't notice until it was too late. He left no way to contact his family either. I still feel bad about losing him.

I too love Marco's post cards. It helped him, but more importantly I think it helped us deal with his death.

Amy
Jun 12: Rectal cancer - Stage IIIC pT2N2 (15/19 pos nodes) - age 49
Jul 12: Resection w/ileostoma
Aug 12: 6 weeks rad w/Xeloda
Sep-Jan 13: FOLFOX - 6 rounds
Jan 13: clean scan
Mar 13: Reversal/Port out
Aug 13: Clean scope
Currently NED

NedPlease
Posts: 537
Joined: Fri Mar 23, 2012 3:56 pm

Re: Really hard topic

Postby NedPlease » Thu Oct 02, 2014 4:24 pm

My spouse knows how important you all are to me and we both would want to let you know any news. It's just a matter of the password and that's easy enough to arrange.
Thanks, Bev, for a reminder.
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
Today- NED

justin case
Posts: 4214
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Location: Katy, Texas

Re: Really hard topic

Postby justin case » Thu Oct 02, 2014 5:02 pm

How about giving your E-Mail to ones you trust :roll: :roll: Given I don't know how I will feel, with hospice staring me in the face, (anger, benevolence, or just plain apathy) how can this question be answered ahead of time? Perhaps, I'll join Chrissy, in a good old bourbon salute, as beer will probably not sit too well :roll:
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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dianetavegia
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Re: Really hard topic

Postby dianetavegia » Tue Sep 11, 2018 7:29 am

Someone shared a link to this thread on the post about Bev's passing. I saw so many names that new people won't remember. Many were dx'd long after me and yet have been gone a long time. It hurts, but it's all a fact of life.

I reached out to Bev's step daughter, who is a strong woman, and asked her to give Steve and the rest of her family my condolences and told them how she'd helped me keep my head on straight at scan times and how she and Dr. Steve helped us when our grandbaby was dx'd in utero with Down Syndrome and some holes in his heart. They called us within hours of Andrew's birth to find out what was being said and Steve was so helpful and checked out the doctors our kids had chosen. That's just the kind of people they were/ are.

I will never forget Bev. She inspired me to take training to become a Cancer Care Minister and then this year advanced training as a lay minister/ leader so I can teach others to help cancer patients and their families. Ironically, our lesson tonight is on death and dying. I have a feeling Bev would have been pleased to know that.

Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

mymom
Posts: 1257
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: Really hard topic

Postby mymom » Thu Sep 13, 2018 10:35 pm

Beautiful
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16 NED


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