how to be "in it together"

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midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

how to be "in it together"

Postby midlifemom » Wed Oct 07, 2015 3:33 pm

My husband always tells me we're "in this together".
It's been almost two years since diagnosis and he's been wonderful, picking up
A lot of slack with cleaning and shopping (could be a bit better with the cooking) butt who's perfect?
But I still feel all alone many times.
He can't go with me to chemo - he's still new at his job, not much vacation time saved up, and we might NEED it down the line.
I'm on CT several times each day, it helps, butt still feeling alone.
My husband and I have talked that although "we're in this together", we're on different paths - me facing death and him facing being alone.
So what does it really mean to "be in it together" anyway?
Has anyone found a way to do this?
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: how to be "in it together"

Postby jalusa » Wed Oct 07, 2015 9:36 pm

I get what you are saying. I don't know if you will ever achieve the feeling you are looking for.

That said, you ARE in it together. He is there for you.

I don't think that either one of you can fully grasp what the other is going through. That just is what it is. Maybe it is best that way.
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

Nik Colon

Re: how to be "in it together"

Postby Nik Colon » Wed Oct 07, 2015 10:19 pm

jalusa wrote:I get what you are saying. I don't know if you will ever achieve the feeling you are looking for.

That said, you ARE in it together. He is there for you.

I don't think that either one of you can fully grasp what the other is going through. That just is what it is. Maybe it is best that way.

Very true, we deal with the aspect that it's us, and for me, I'm glad it's not my husband and that it's me. I almost feel selfish cuz I don't know how I would deal with it reversed. As anyone who cares for someone who has cancer, they have to deal with the possibility of losing you, feeling helpless, etc.

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: how to be "in it together"

Postby JudeD59 » Thu Oct 08, 2015 1:09 am

I understand the feeling alone part. My husband and daughters have been great. I couldn't ask for better support. And yet, I often feel alone because as helpful as they are and as much as this is hard for them, they don't have cancer. I am so grateful that they don't. But it is an isolating experience when you are the only one with the disease. It hits me at odd times--when they leave for the afternoon to visit and hold a friend's new baby or fly to a wedding I was invited to but can't attend or are laughing as they cook together in my kitchen where I used to be the head chef giving orders and making them laugh, or late at night when they are all asleep and I can't rid my head of worry and find sleep for myself. I am thrilled that they are happy and healthy and living full exciting lives, but it makes the life I'm leading right now seem all the more depressing and pain-filled in contrast. And lonely.

I make my living expressing myself through words, yet I can't find the words to tell anyone what a nightmare having cancer truly is. There are just so many components to it, so many complications, so many side effects, so many emotions, so much maintenance, so much to worry about and stay on top of, and it is overwhelming most of the time. It feels like a full-time job with no time off. I find it so hard to have the energy to focus on anything else besides dealing with the cancer. Phone calls from family and friends drain me. I don't have the energy to keep up with holidays, birthdays, anniversaries, who started a new job or relationship, who just came back from vacation, etc. After decades of not only running our household and helping my husband and daughters' lives run smoothly, but being the one to keep our extended families close and in touch with each other, I had to cut the strings and let them all fend for themselves. I just can't do it right now. I can't worry about being polite or whose feelings will be hurt if I miss their special day or don't return a call. I have to do what's best for me minute by minute, hour by hour, day by day. And those who understand and are still standing by me when this long nightmare is over will have proved they are true friends. Those who don't understand why I couldn't just pick up the phone to call and say Happy Anniversary or listen to the details of their latest fight with their boss will most likely fade from my life.

I do feel that my husband and I are in this together just like we've been in so many things together over the decades where our roles were different but equally important. We raised our daughters together, but the daily hands-on work was mostly me. We built a business together, but the daily hands-on work there was mostly him. I was there for him when he lost family members, he was there for me when I lost family members, and the pain wasn't always equal, but we shared it. Now I have cancer and I know that just as the cancer is eating me up, the fact that I'm suffering is eating him up. And just as I have moments when I feel alone, I know he has moments when he feels alone because he can't take my pain and fear away and because he wants to understand what I want and need, but doesn't always. And because no one else understands exactly what he is feeling and suffering because he's the only one who is my husband and best friend and his feelings are unique to him and him alone. He wants to fix it and he can't, he wants to give me what I need and I can't always tell him what that is because sometimes I don't know myself. After 33 years together, I'm sailing into uncharted waters for us and it must be terrifying for him to not be able to grab the wheel and steer us back to the comfortable shore where we've spent so many happy years.

I think talking to each other, sharing your fears, your anger, your frustration, your gratitude, the small things that give you joy, the things that terrify you and keep you awake at night, is the most important thing you can do to truly be in this together. I would rather have my husband say, "I can't sleep at night because I lie awake worrying that I'm going to lose you," than keep a stiff upper lip and tell me over and over again that he is fine, I'll be fine, everything is fine. Not being able to shed a few tears together, rage at the unfairness of it all, and hold each other until we feel that we are strong enough together to make it through another day would make me feel completely alone. That isn't the answer for everyone since all relationships are different, but that's what works for us and has for many years.

I hope you find what works for you and your husband.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

User avatar
Maggie Nell
Posts: 1134
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: how to be "in it together"

Postby Maggie Nell » Thu Oct 08, 2015 1:19 am

Forgive me for saying this, but "we're in it together" is just paraphrasing the wedding vows:
For better for worse, for sickness and in health...... That's a nice clause that, I think,
we all hope will be more in health than sickness: and if it's sickness, that it's no more
than a bad flu or traveller's diarrhoea, certainly something that isn't life-threatening, isn't
going to re-shape your whole relationship because there was nothing about that in the vows!

What calibre of female buddies do you have in your life?
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

Nik Colon

Re: how to be "in it together"

Postby Nik Colon » Thu Oct 08, 2015 1:56 am

Luckily for me, everyone is understanding when I say I can't do or go places, including important ones. Of course it's upsetting for all of us, but not out of anger towards me. My biggest fear is is for my hub, daughter, and parents, especially since they already lost their son only 3 years ago and I don't know how they could handle losing another child. No one understands being in our shoes unless they have, but we cannot understand being in theirs unless we have. All we can do is our best to do what we feel is best. It's just a shitty situation for everyone.

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: how to be "in it together"

Postby midlifemom » Thu Oct 08, 2015 11:26 am

Thanks everyone for your input and support.
I should have known that the folks here also can sympathize with the feelings of loneliness.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: how to be "in it together"

Postby jalusa » Thu Oct 08, 2015 11:46 am

Thinking more about this.

I have had some really severe anguish about my diagnosis, we all have. I don't know if it is best that my caretaker "feel" what I felt. They already have their own. I know I have had to quit over sharing with my wife to preserve her sanity.

This does not mean we are not in it together.
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

arizona mom
Posts: 127
Joined: Thu May 08, 2014 10:25 am

Re: how to be "in it together"

Postby arizona mom » Thu Oct 08, 2015 2:58 pm

interesting topic.

My husband and i have a system that seems to be working well for us. He manages to stay in a blissful state of denial which manages to keep the family and myself pretty positive. He knows what is going on and that it is serious, but he refuses to worry about the unknown.

I'm the one doing all the research. I look at statistics and survival stories and I figure out a plan. His "role" is to make it happen. When I decided that I needed to be at MSK in New York, he hired someone to do the busy work for our home business and made all travel and living arrangements. Less that 3 weeks after my diagnosis, he packed up the prius and we drove across country to live in PA for 6 months to have access to MSK. When I had my big colon/liver/hai surgery, he slept in my room for a week. He encouraged me to walk and do my breathing exercises, arranged my pillows, helped me in the bath room, etc. Almost everything he does for the business is done on his laptop, so he is able to be with me for chemo, etc.

Sometimes I worry about if his denial is unhealthy and he is setting himself up for a big crash if things go bad. I worry about how hard it will be for him to be alone if we ultimately lose this battle. I also have worried that he is repressing his fears in order to stay strong for me and the kids. We have talked about this pretty thoroughly and he is genuinely in a blissful denial and I have learned to be just be grateful for that because it does make it a lot easier for me.

I believe that communication is essential. We do come at this from different perspectives and the best thing we can learn to do is ask for what we need from them in a kind and loving way. Don't expect your spouse to be a mind reader. Also, a good daily ritual for all relationships, with cancer or not, is to sit "knee to knee" and ask each other 3 questions 1) How are you feeling right now? 2) Is there anything coming up in the next day that you are excited or anxious about? 3) Is there anything we need to plan to talk about in regards to our relationship.

I want to express genuine gratitude for all the devoted caretakers out there. You are heroes in my eyes.
47 yrs mom of 4
5-7-14 - dx stage IV-3 liver mets. CEA 76
5-20-14 Folfox w/Avastin
7-24-14 - Colon/liver resection and HAI implant at MSKCC
11-18-2014 - scan- NED!
12-19-14 finished 12 treatments of Folfox (dropped Oxali after 9)
2-19-15, 6-18-15 clean scans - NED
9-11-15 mets in ovaries - hysterectomy - CEA 1.0
Folfiri 10/15 to 3/16
3-24-16 CT scan NED
7-1-16 It's back. 1cm in lung and 3 peri mets. :(

Joannerogers
Posts: 260
Joined: Tue Jun 16, 2015 4:50 pm

Re: how to be "in it together"

Postby Joannerogers » Thu Oct 08, 2015 9:02 pm

I think I know how you feel. My husband takes very good care of me. I know my cancer is my cancer, no one else can have it, even though my dh said he gladly would. I know that his suffering is his suffering and I can't suffer for him or for the rest of my family, but we are still all in it together ...I just wish we didn't have to be.
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

justin case
Posts: 4261
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: how to be "in it together"

Postby justin case » Fri Oct 09, 2015 8:42 pm

midlifemom wrote:My husband always tells me we're "in this together".
It's been almost two years since diagnosis and he's been wonderful, picking up
A lot of slack with cleaning and shopping (could be a bit better with the cooking) butt who's perfect?
But I still feel all alone many times.
He can't go with me to chemo - he's still new at his job, not much vacation time saved up, and we might NEED it down the line.
I'm on CT several times each day, it helps, butt still feeling alone.
My husband and I have talked that although "we're in this together", we're on different paths - me facing death and him facing being alone.
So what does it really mean to "be in it together" anyway?
Has anyone found a way to do this?

It sounds like your husband is focused on trying to be helpful. His thoughts are probably not always shared, as men are somewhat discreet with their feelings. I'm exhausted when I get home from work, but I set the alarm to go off everyday, 30 minutes before I have to get up. That gives Me time for snuggles with my beloved 8)
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

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: how to be "in it together"

Postby midlifemom » Sat Oct 10, 2015 6:56 pm

Thanks all.

Jalusa - your comment about over sharing and
Arizona mom, your dh being in blissful denial - You both have me thinking. I suppose our first step is to figure out how much sharing there should be.
When my cea was trending up I didn't tell my dh. Later, when I finally told him, he admitted he didn't ask because he was scared of what the answer might be. We have to get on the same page here.
Michael - your waking up early for snuggle time is an awesome idea. Will keep that one in mind.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: how to be "in it together"

Postby Ron50 » Sun Oct 11, 2015 4:08 pm

My wife could not accept or deal with me being sick. My doctors were very frank with both of us from the start. Too aggressive , too many lymph nodes. You won't make it. I knew I would but my wife did not care. She could not take the constant stress of medical tests and uncertainty. She asked me to leave. I did. I have been living alone for over nine years now. Sometimes I feel ok , most times I do it tough. She is right on one count. I am always sick. Cancer and chemo have left me with a legacy of pain and auto immune disease. My kidneys are stuffed as is my back. I take cyclosporine just to stay alive and 80mg daily of targin (oxycodone ) just to stay sane. That is ending as it is now causing me more pain than it saves ,hypoalgesia they think. I now have to go thru 16 weeks + of slowly lowering doses to get off it. I have been told it won't be easy. It scares me that I have to do it alone. People sometimes ask why people like me are still on this board after 17 years of survival. Some times it really helps not to be alone. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

Lee
Posts: 6005
Joined: Sun Apr 16, 2006 4:09 pm

Re: how to be "in it together"

Postby Lee » Sun Oct 11, 2015 4:24 pm

arizona mom wrote:interesting topic.

My husband and i have a system that seems to be working well for us. He manages to stay in a blissful state of denial which manages to keep the family and myself pretty positive. He knows what is going on and that it is serious, but he refuses to worry about the unknown.




My DH was the same. It helped with our 2 young kids. We tried to keep things as normal as possible, yet everyone knew about the elephant in the room.

Thinking of you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: how to be "in it together"

Postby midlifemom » Sun Oct 11, 2015 6:38 pm

Ron50 wrote:My wife could not accept or deal with me being sick. My doctors were very frank with both of us from the start. Too aggressive , too many lymph nodes. You won't make it. I knew I would but my wife did not care. She could not take the constant stress of medical tests and uncertainty. She asked me to leave. I did. I have been living alone for over nine years now. Sometimes I feel ok , most times I do it tough. She is right on one count. I am always sick. Cancer and chemo have left me with a legacy of pain and auto immune disease. My kidneys are stuffed as is my back. I take cyclosporine just to stay alive and 80mg daily of targin (oxycodone ) just to stay sane. That is ending as it is now causing me more pain than it saves ,hypoalgesia they think. I now have to go thru 16 weeks + of slowly lowering doses to get off it. I have been told it won't be easy. It scares me that I have to do it alone. People sometimes ask why people like me are still on this board after 17 years of survival. Some times it really helps not to be alone. Ron.


Ron, so sorry you (and others) are fighting this alone. Thanks for the perspective.
Although I don't always feel my dh and I are on the same page at least I'm not alone.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?


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