NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Please feel free to read, share your thoughts, your stories and connect with others!
bitchslapped
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby bitchslapped » Tue May 05, 2015 4:16 pm

WifeOfMike wrote:I am being torn to shreds, because I still have not been able to do hubby's Celebration of Life Ceremony. I was really close end of March & my best friend got strep throat for over a month (she is helping), so we had to postpone all thru April. LIFE/ deadlines keeps getting in the way. I know HE would understand, but feel like the rest of the pack of wolves will NOT & judgement is being passed. I guess I should not care what anyone else thinks... no one else knows unless they are walking in my shoes (except all of YOU). Guilt, creeps in, and I am trying to shove it under a mat. With all of the moves, etc......... It makes me nauseous to think this will now be put off until June..... six months after our loss and runs close to his birthday (June 19th) and smack into an out of town trade show we are obligated to do. GULP...... Where the heck did time fly off to??????? I want to both slow down AND speed up time, all within each day. Did any of you face this kind of time pressure hell??????


Hi Sista
You are probably pretty well onto me by now. Didn't go there. Gave everything from within when it mattered the most, would make a difference, as did you. I didn't have the emotional strength, had to tend to the living as I still had my DM who required 24/7 care. The rest is pomp & circumstance for everyone else IMO. Sudden deaths maybe a little different. IDK, as the spouses/family need a lot of people around for support reeling from the shock, don't have a chance to say goodbye. Sounds like you & the kids don't need it...we didn't either. It had been a long, painful journey w/grieving all along the way. If his parents do, how about a small dinner out w/the fam, i.e. your kids, mother, his parents, a close friend or two to break the mix up a bit, make it more comfortable. Everyone can share a favorite memory/story as you go around the table. Or make a couple of Costco trips, have something @ home outside. You must be familiar w/the KISS theory. Break it down, make it manageable & get it (them) off your plate. You'll be done in a week. It probably won't change a thing for you personally speaking. Unless you feel not having a big shindig for all the survivors is disrespectful to DH wishes, make it manageable Darlin. You can have a larger COL later on if that seems to make sense for your current situation. Either way, it will not bring him back or change your loss in any way whatsoever. Guilt is a huge waste of emotion for you right now, an unnecessary burden. Sounds like you are tending to that business that he poured his life into to support his family. For us, it was @ least 3 yrs later, in the mountains under the trees @ a site of his choosing, 6 people ( me, his sons, one of mine, dnl, grandson) & a prayer. Breakfast out @ a familiar restaurant on the way up the mountain to where we/he used to camp & trail ride w/his boys, then on the way down, nice afternoon @ mtn park of pony rides, gocarts, etc...as a family. He has been memorialized countless times in my heart, to my grandson as I teach him of his grandpa he never got to meet, his sons, my sons, friends...to this day. You just carry them around w/you. (Hugs)

XOXO

BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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exaussie
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby exaussie » Wed May 06, 2015 8:41 am

Loved what ypu said BS and I whole-heartedly agree.
Guilt has no place in your life Vicki.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

LisaNH
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Joined: Fri Mar 20, 2015 8:30 am

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby LisaNH » Wed May 06, 2015 9:08 am

Agree with BS. You've been through one of the hardest things there is to deal with. Be patient and kind to yourself.

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exaussie
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby exaussie » Wed May 06, 2015 9:53 am

This goes for loss of spouse as well. Would be good to have these available at a funeral.for loved ones to read

These are some ways you can help a grieving parent:

1. A simple text, even just saying “I’m thinking of you,” is always is helpful.

2. Please don’t ask the question, “How are you doing?” We all know the answer to that. Let’s face it, after losing a child you’re never going to be great.

3. A grieving parent doesn’t like making plans because they may wake up that day and not feel like doing anything. Or maybe they want to be alone. If they do make plans and cancel you should be understanding.

4. The grieving parent may not reach out to you as often as they did. This is something I’ve done. Don’t be insulted by this. They are grieving and their mind isn’t always there. Remember they just went through a traumatic experience.

5. Don’t say, “She is in a better place.” In reality, she isn’t. She should be here with her family.

6. Sometimes, just sitting there and listening to them cry and talk about their child is enough.

7. Hugs are always helpful.

8. Don’t stop being there for a grieving parent. You’re not annoying them or upsetting them. They want to be thought of and they want their child remembered. Even if you only contact the grieving parent once a week, it helps.

9. Remember the anniversary dates of their child, like their birthdate and even their “Heaven date.”

10. Be strong for them. A grieving parent is trying to remain strong for their family — they’re trying to be the best parent, wife or husband, sibling, etc. They need a friend to be strong for them.

11. Remember there isn’t a timeline for grief. Instead of the process getting easier, it gets harder. The longer a parent goes without seeing or holding their child, the harder grief becomes to handle.

12. Please know a grieving parent will never be the same person they were before. They are going through the unimaginable and it will take some time for them to figure out a new way of life without their child.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

WifeOfMike
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby WifeOfMike » Wed May 06, 2015 9:20 pm

Thanks for the suggestions. We are always harder on ourselves than we should be (IE the Guilt)- I know that is true for me.

I have me, best friends and 3 sons that I want to have a boat lei ceremony, as hubby donated his body to science & will ultimately be laid to rest in the beautiful ocean he loved so much. We do not know when he will actually be set to sea- part of the condition of the donation & we are all right with that. This Ceremony is a very private thing that I do not want to share above & beyond this group (except my mom who will never go into a boat). I just bought my youngest son a 21' boat that will fit us all, so now I have no need to rent/ borrow a boat. I work 6 days/ week- sometimes 7. My sons all work 4 days/ week on rotation. The only day off we all have in common is a Sunday- which have been filled due to many obstacles. I am not worried about the time frame- my sons/ best friends know what load I am under.

I may take your advice and have his family mob together by themselves. Parents, sisters, aunts, uncles, cousins. Snag is sister who lives in Portland Oregon, others in south San Diego, one niece lives in France- we live in upper San Diego. To put it mildly- there is no lovey dovey feelings from me to them, but my kids- that is a different story..... and something hubby would want- so there it is there. Further the stink, as hubby's mother did not tell his side of the family until a month & a half after he passed..... so they contacted me in an uproar- (OH JOY). I did not have their contact info, until that time. I originally wanted to combine it with below, so I would not have much one on one face time... to be blunt. But that would make two events become three. and probably even more work.

Hubby owned his own business for 35 years....... I have known a lot of those faces for many years. Many expect a send off/ want to be invited. This is the most difficult part, as we run into these friends/ customers who want to pay tribute to Mike. It is somewhat complicated by the fact that we had not told anyone hubby was sick, much less terminal. HIS WISHES & something I backed as it saved HIM & our sons daily questions for over two years. We have to face one to a handful 6 days/ week & tell them the news he has passed.... and will be doing that for the next year or two. VERY HARD, to be relaying the story over & over & over again. This group is rather large (and a lot smaller than many of those faces think). I could blow this whole thing off...... BUTT would leave a lot of folk shaking their heads in dismay, and sad not to say "goodbye" in some formal way.

Again to be honest..... I would be happy with a tiny boat-full. The latter two are more a to be expected.... as hubby's wife & best friend. I truly wish my GF best friend had not taken ill for over a month. This would all be behind me, instead of drilling a whole in my head like a ticking/ guilt ridden time bomb in the middle of more life deadlines that cannot be moved.... and keep on piling on. The business/ legal snafoo's that are entailed, along with moves, other business orientated things, BF illness, have kicked this can down the road. I am so overwhelmed and exhausted, that words cannot relay. I feel like my days are spinning by, and I am treading water in the middle of a tsunami. I want to be anyone BUTT ME.

hugs,
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

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Kathleen808
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Kathleen808 » Fri May 08, 2015 1:09 am

Oh Vicki,
I am so very sorry you are so overwhelmed right now. I really hope you can get to a place where the only one you are thinking about in terms of what you do for Mike's celebration of life is you and then your kids. This is all about you and them. This is most certainly not about anyone else. No guilt my friend. You are dealing with so much sh*t that those who haven't been there have no idea whatsoever. They are blissfully clueless. Take care. Please take some time for yourself. I hope you can at least walk a few times a week.

Sending love and aloha,
Kathleen
Kathleen
DH 1/09 3c 51yr rsct
Folfx 3/09
1 l nd 9/09 Flfri Avstn
PET clr 6/10
Folfri Avstn 7/10
ND 10/10
1/11 lng mets Flfri Avastn
ND 2/12
9/12 Flfri Avastn
10/12 grwth lng mts Erbtx Avstn Irintcn
1/13 stabl
9/13 grwth
8/16/14 passed into eternal peace

Helen
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Helen » Mon Jun 01, 2015 1:42 pm

Hello everyone,

I am curious about how you all are doing? Also I wonder if anyone has had this come up yet.I had a physical a couple of weeks ago and I had a 3D mammogram.I had the mammogram on a friday and when I asked the tech when I would hear she laughed and said if you don't get the "oh shit" call by tonight your fine.Well I got the oh shit call last Tuesday late afternoon,they are doing a spot mammogram and ultra sound this thursday and I will see the radiologist before I leave for results of those tests.This Wednesday I see a GI to set my appt for my colonoscopy,kinda bugs me I have to see him for an appt before my scope but oh well.My labs all came back good except for alkaline phosphatase is elevated.I am 52 and have needed a colonoscopy for a couple of years and now that I have coverage I am getting everything done.The thing is this is exactly the kind of thing that my darling Pam would of held my hand and walked me thru.I made the mistake of telling a family member about my tests and now they are all nervous for me oh and they felt the need to burden my mom and other family members with my stuff.Now I and Im pretty sure all of you know that until the tests are done there is nothing to tell anyone about and yet they keep asking.I wish I hadn't said anything to anyone but I need a ride for the colonoscopy and I guess its my bad for just not using a taxi service.I miss my wife everyday in a million different ways.Pam and I had 20 years together and could tell from just a look what was needed from the other.I worry that somehow my nephews will hear about my tests and be afraid and yet I am not ready to discuss this with them because I don't have any info other than I need more tests.As some of you may remember they lost their mom my only sibling a year before their Aunt Pam passed so I do not want to stress them unless I have a reason to.I never thought about my mammogram coming back for more testing it was and is my colonoscopy that I am most curious about.I do have family history and have had changes in the last couple of years in my bowels,the biggest thing is I have had a pretty significant weight loss since the beginning of the year about 35 40 lbs.My grandpa passed from CRC when I was 18 I always thought it was pancreatic cancer but recently found out it was not.Sorry for rambling butt this is the place I feel safe to do just that.My mom has her colonoscopy every May and the last 3 years she has had sessile polyps removed.I am sure I am healthy butt after all that I have seen and witnessed I will admit I am a bit afraid...

Peace and Love

~Helen
My partner of almost 18 years ***Wife as of July 1 2013***Pam was dx in Nov 2011
Stage IV advanced mCRC
Nov 2011 colostomy
Feb 2012 Folfiri
March 2012 Erbitux
May 2012 3 blood clots
June 2012 Lovenox
May 2013 FOLFOX
Dec 19 2013 My beloved was set free

bitchslapped
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby bitchslapped » Fri Jun 05, 2015 3:58 pm

Hi Helen,
I'm glad we have this thread for members to stay in touch & express themselves. It has only been 3 mos. since the passing of my DSS & the fallout from that. And there is always some kind of fallout it seems, family flap, etc. I tend to do better if I don't talk abut it too much. I have to get colonoscopies periodically & is a real pain because they will not allow taxi service to drop you off, or take a bus, or even walk there & back due to the sedation & procedure . Someone you know has to come in & sign in & for you to be released, i.e., family, friend, neighbor. Let us know how things play out for you.

Best wishes
Bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07, lvr, billiary tree fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

justin case
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby justin case » Fri Jun 05, 2015 5:38 pm

bitchslapped wrote:
WifeOfMike wrote:I am being torn to shreds, because I still have not been able to do hubby's Celebration of Life Ceremony. I was really close end of March & my best friend got strep throat for over a month (she is helping), so we had to postpone all thru April. LIFE/ deadlines keeps getting in the way. I know HE would understand, but feel like the rest of the pack of wolves will NOT & judgement is being passed. I guess I should not care what anyone else thinks... no one else knows unless they are walking in my shoes (except all of YOU). Guilt, creeps in, and I am trying to shove it under a mat. With all of the moves, etc......... It makes me nauseous to think this will now be put off until June..... six months after our loss and runs close to his birthday (June 19th) and smack into an out of town trade show we are obligated to do. GULP...... Where the heck did time fly off to??????? I want to both slow down AND speed up time, all within each day. Did any of you face this kind of time pressure hell??????


Hi Sista
You are probably pretty well onto me by now. Didn't go there. Gave everything from within when it mattered the most, would make a difference, as did you. I didn't have the emotional strength, had to tend to the living as I still had my DM who required 24/7 care. The rest is pomp & circumstance for everyone else IMO. Sudden deaths maybe a little different. IDK, as the spouses/family need a lot of people around for support reeling from the shock, don't have a chance to say goodbye. Sounds like you & the kids don't need it...we didn't either. It had been a long, painful journey w/grieving all along the way. If his parents do, how about a small dinner out w/the fam, i.e. your kids, mother, his parents, a close friend or two to break the mix up a bit, make it more comfortable. Everyone can share a favorite memory/story as you go around the table. Or make a couple of Costco trips, have something @ home outside. You must be familiar w/the KISS theory. Break it down, make it manageable & get it (them) off your plate. You'll be done in a week. It probably won't change a thing for you personally speaking. Unless you feel not having a big shindig for all the survivors is disrespectful to DH wishes, make it manageable Darlin. You can have a larger COL later on if that seems to make sense for your current situation. Either way, it will not bring him back or change your loss in any way whatsoever. Guilt is a huge waste of emotion for you right now, an unnecessary burden. Sounds like you are tending to that business that he poured his life into to support his family. For us, it was @ least 3 yrs later, in the mountains under the trees @ a site of his choosing, 6 people ( me, his sons, one of mine, dnl, grandson) & a prayer. Breakfast out @ a familiar restaurant on the way up the mountain to where we/he used to camp & trail ride w/his boys, then on the way down, nice afternoon @ mtn park of pony rides, gocarts, etc...as a family. He has been memorialized countless times in my heart, to my grandson as I teach him of his grandpa he never got to meet, his sons, my sons, friends...to this day. You just carry them around w/you. (Hugs)

XOXO

BS

This is a voice of reason!
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

Helen
Posts: 240
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Helen » Sun Jun 07, 2015 12:59 pm

Hello All

Well I had my work up for my breasts another mammogram and ultra sound on both sides this past thursday.The current conclusion is called a category 3 and what that really means is we wait and see.The protocol is redo in 3 months then 6 ongoing for 2 years,unless there is growth then it will be a surgical biopsy.Last wednesday I met the GI that is doing my colonoscopy this coming friday.I liked him and felt like we had a good connection,at one point I felt like he was trying to sell me on the procedure and I told him I didn't need to be sold and told him about my darling Pam's dx and passing.He then said no I believe I do not need to convince you and went on to tell me how many folks he really has to sell on the benefits of screening and I told him I thought that the age should be lowered to 25 across the board for everyone.Both my GP and the GI are both concerned about my alkaline phosphatase level being up and I had more blood work done last thursday looking forward to the results.

Peace and Love

~Helen

PS I think they are concerned because I have lost over 45 lbs and even though I could use to lose the weight I have not been dieting.In fact after I realized I was done over 40 I have been trying to add weight and it just isn't happening.Dont get me wrong I am not even close to thin the weight loss kinda scared me and that is why I have tried to put some on unsuccessfully.
My partner of almost 18 years ***Wife as of July 1 2013***Pam was dx in Nov 2011
Stage IV advanced mCRC
Nov 2011 colostomy
Feb 2012 Folfiri
March 2012 Erbitux
May 2012 3 blood clots
June 2012 Lovenox
May 2013 FOLFOX
Dec 19 2013 My beloved was set free

pfCml73183
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Facebook Username: Celeste Marie Comeau
Location: FL

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby pfCml73183 » Mon Jun 08, 2015 3:07 pm

I hate that I now "qualify" to join in this thread.
Helen, I think about you often and I pray all goes well for you.
Peace to you, Celeste
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

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Patience
Posts: 834
Joined: Fri Dec 09, 2011 10:26 am

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Patience » Wed Jun 17, 2015 4:54 am

It's been about a year since my husband died. The shock of him being gone is over. But the deep sadness remains, like a well I've fallen into. I can see light from an outside source, so the well is not totally black. But it is dark. And deep. And cold. And add a dose of boring. You know, I did not think I'd miss him this intensely for so long. So that has been another surprise, along with all the awful surprises that his illness brought.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

Val*pal
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Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Val*pal » Wed Jun 17, 2015 10:54 am

Patience: I'm so sorry you are still so engulfed in your loss. I can relate. It's funny that you mention boredom, which is something I've experienced as well but have not really acknowledged. It IS boring not to have a partner with whom to share the little things in life. I do feel lonely a lot as well, but I know there are proactive things I can do to dampen that, but I just don't have the mental energy to do it at this time. I think I just need to go through this for a while, and then perhaps I can re-engage more.

Danny's first anniversary of his death is a few days away. I've definitely been more tearful and emotional over the past few weeks as I recall those last days. Again, it's just another one of those steps to get through, but it sucks.

What really makes me sad is that I will be alone for the anniversary of Danny's passing. Two of my adult children are always nearby, but they will be gone on the anniversary. My third child lives in San Francisco. They are my children from my first husband (divorce), and their dad always has an annual family "fun" weekend the same time each year, so like last year, they will be about 150 miles away. What makes this more difficult is that it just highlights the misery I went through a year ago the day Danny died. I had encouraged my two children to go to their dad's event since I felt Danny had a few more days left and they would be back in time to support me during his death. The day they left is the day he died. He passed away about seven hours after they left. When I called to tell them that Danny had died, they wanted to immediately jump in the car and come home, but I told them to wait until morning. That night was a torture for me. I can't even begin to describe it. Sigh.

So on the 20th, I will be alone again. I know I should reach out to some of my friends, but I just don't know if that would help. I think this is just something to get through.

I still can't talk about Danny's actual death. It's not because he suffered a lot . . . it's just the set of circumstances that occurred. I guess I should join a grief support group to talk it out.

Ugh. I know this is such a downer. Fortunately, I can vent here. The truth is that most of the time I stay busy and have actual moments of happiness. It's just this anniversary that is affecting me. I sort of anticipated this but it is harder than I imagined.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

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exaussie
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Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby exaussie » Wed Jun 17, 2015 11:32 am

I feel like grief is a veil that we look through life. The hardest for me is that joy is gone. I can laugh but it's brief and then the veil lowers again. The exhaustion is hard still. Someone I think on this forum talked about as caregivers we should expect exhaustion to last up to a year and a half.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

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Patience
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Joined: Fri Dec 09, 2011 10:26 am

Re: NEW THREAD FOR LOVED ONES LEFT BEHIND ONGOING

Postby Patience » Wed Jun 17, 2015 10:37 pm

Val Pal, you hit it about the loneliness. I was just thinking about the reminders that happen, that aren't even conscious, but none the less a void. My husband used to open our garage for me if I was headed home. Now that little reminder of someone else caring to help is gone. Sometimes I'd go to empty to dishwasher, and he'd have done it. That little surprise of caring to help is gone. I'd get in my car to find that the gas tank was suddenly full. That little reminder of someone else to care is gone.

I've been getting a stress headache from the mental struggle with the year anniversary grief.

Exaussie, you have my admiration on dealing with your loss. I cannot even imagine how you've managed to develop any level of coping skills. If it is true what you were told, a year and a half for exhaustion, maybe there is some hope of a lightening up yet. We can all hope for ourselves, and each other.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."


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