looking for other caregivers-husband w/colon cancer

starbuxgirl
starbuxgirl Member Posts: 2
in Colorectal Cancer #1

I am 32, my husband is 34 and was diagnosed with stage 4 colon cancer last year.  already been through oral chemo/radiation, surgery, now in the midst of 12 cycles of IV chemo.  i'd really like to hear from other young colon cancer survivors.  Seems like everyone we meet is 20-40 years older than us.  We have three young kids.  I just feel like the experience is different as young parents than that of a 64 year old empty-nester.  Every doc appointment, every treatment requires finding a babysitter, or somebody to pick kids up from school.  I feel like everything is falling on me to take care of everybody, fix all the meals, do all the chores, I work and I am in grad school (started before cancer was diagnosed).  I am exhausted all the time.  I feel like I have to be emotionally stable for my kids, they still need to get through school and homework and the normal stuff of childhood whether daddy has cancer or not.  It's been 8 months since diagnosis (after months and months of tests because the doctors blew us off) and I don't know how much longer I can keep up this pace.  But I honestly don't know what can give either.  And I don't know how to feel about it. I've seen the stats-prognosis isn't great for Stage 4 colon cancer, but the doctor keeps being vaguely optimistic without giving us much info.  My husband is totally optimistic too, but I don't feel like it's all daisies and rainbows right now.  Is there Anybody else out there that can relate?

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Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Dear Starbuxgirl

    First of all, welcome to our on-line family.  We are sorry you have the need to be here but will support you as best we can.

    You are right, there are not as many young folks here, but that doesn't mean we can't relate to the overwhelming burdens you carry. 

    It might be helpful if you could tell us what part of the world/country you live in.  We have a far flung group, and there may be someone in your geographical area who can best help with what you face.

    Have you or are you able to reach out to others in your community....family, friends, neighbors, faith based group, social services,  your school, American Cancer Society?  Many times there are groups who willingly help to pick up some of the general tasks of life to allow the caregiver to concentrate on support of the patient or to catch a bit of time for themself.  It is not a weakness to ask others for help in times like this.

    You don't mention how your husband is physically handling the chemo.  If he has good days, let him participate in the daily tasks as he is able.  Not only will it help you, but it will help him emotionally to be a contributor.  Or perhaps he is able to work during treatments, many are.

    You are not alone.  There are others out there within your reach who will gladly help...just have to let them know they are needed.

    Please continue to post here and let us be at least an emotional support for you.

    Marie who loves kitties

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #3
    I was a little older when

    I was a little older when diagnosed stage IV right after my 41st birthday. That was over 8 years ago and still doing great.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #4
    Well we are about a dozen

    Well we are about a dozen years older than you, but we do have a 2 yr old...and 2 teens.   My husband was diagnosed stage 4 in August 2012, he worked all through chemo and surgery, but had a re-occurence in the bones in Oct/Nov this yr and has been out of work since mid-Oct.  His bone mets were not diagnosed until after the femur broke. He had rods put in both legs so he has not been able to walk, drive, even bathe in months.  I understand exhaused!   

    We have been so fortunate to have people cooking us dinner every other night.   A friend set up a meal-train (www.mealtrain.com or something like that) and it filled up quickly, some people we hardly know signed up to make dinner.  It's something that anyone can do, it makes them feel like they are doing something to help, and it is a big help.  Do you have a friend that can send an invite out to have dinners cooked for your family?   Do you have friends, neighbors or family that can help with rides for your kids?   I'm not one to ask for help and I've been fortunate the I have a couple of friends that know that and have just stepped in....but you may need to just ask.  People will be happy to help.  Are you involved in Church or school stuff, kids in sports or scouts?  Seems like those are great sources of help.  Reach out to the right person and they can be a big help in organizing other to help.  One of the couples that brought us dinner are new to this area and we don't know them well and we were surpised and thankful that they cooked for us.  They told us that she had cancer 4 yrs ago and before she started treatment she lined up people to cook, clean, give the kids rides and even do their laundry.   Everyone was happy to do it for them and now they are paying it forward.     If you don't have a friend to ask, think about talking to the social worker at school - maybe she can ask the PTO leader to get some help from the other moms.   

    Why is your husband stage 4?   There are some stage 4 people who can be cured, so hopefully your husband is one of the lucky ones.

  • BusterBrown
    BusterBrown Member Posts: 221 Member
    #5
    I was dx'd w/ stage iv when I

    I was dx'd w/ stage iv when I was 42 years old. I'm going to be 52 this month. At the time of diagnosis my son was  2 years old.  I've experienced a lot of what you are going through, just on a smaller scale. There are plenty here who can relate to what you are going through. 

    Buster...

  • devotion10
    devotion10 Member Posts: 623 Member
    #6
    Hello starbuxgirl ...

    I can certainly hear your distress and, as best I can, understand how overwhelmed you must feel.  You may find it odd to be given advice from a someone whose loved one did not survive their cancer, but having been a caregiver from the time of diagnosis to the time of my husband’s death almost five years later while also caring for our adult special-needs son … I feel I have some things to share that may be helpful to you.

    If you keep coming back to this forum and listen to the shared stories, you may find that you have more in common with other caregivers than you think … no matter what their age.  Compassion and empathy abound here from folks with differing ages, backgrounds, stages of cancer, and treatments.

    Each person has a unique set of needs and responsibilities as a caregiver.  You are trying to care for yourself, your husband, and also your children. Someone older - while it may seem as if their burdens are lighter - may be caring for themselves, their loved one with cancer, and also perhaps a parent or adult child who is ill or of diminished capacity. Also, being an older caregiver, the individuals may not be in good health themselves or have the resilient nature of a younger person. My point is … one never knows what each individual caregiver’s burdens may be or what comfort they may be able to provide you.

    I encourage you to start coming here, read, listen, ask questions, and also express your concerns and fears.  I also encourage you to try to put some things in place as soon as you can because you are only eight months into what could be a long period of challenges.  Your husband could live with his cancer as a chronic condition that must be monitored long-term.  He will certainly require more doctor visits, treatments, scans, blood work, and maybe more surgery in the future. Not knowing the specifics of his diagnosis, except that he is stage four, I am unclear.  Something to consider is that your husband’s youth may help him endure his treatments and improve his odds for survival.

    There are individuals who have lived many years beyond the ‘stats.' Perhaps this is why doctors are vague about prognosis and try to remain optimistic. They know with any statistic, there are individuals who will fall on both ends of the spectrum … it is good that they do not dampen hope.  I think your husband is optimistic because that is the nature of life isn’t if you think about it … to continue to have hope, to want to live, and to overcome the odds.

    In my opinion, you want to be able as much as possible to try to be optimistic with your husband as a form of support …  and if you are absolutely overwhelmed for too long a period of time … there is an aspect, I think, of human nature that darkly just wishes that it all was over simply so the stress will be gone. I think many caregivers might have fleetingly had these darker thoughts when thinking of a kind of escape from the stress of trying to care for a loved one with cancer while also trying to juggle the other responsibilities of life. You have to get yourself some additional support before you totally burn out as you will be of little use to anyone.

    There are so many reasons to try to put in place some practical strategies to relieve your stress if at all possible … can grad school be put on hold until your family’s life stabilizes a bit? Can a solid back-up plan be put in place for your children’s care for both scheduled appointments and for emergencies?  Does your husband’s cancer center have a team of social workers or counselors you could speak with?

    Now, having said all this, I don’t want to disregard that you did request specifically to hear from other young cancer survivors-caregivers who could relate to your situation …  there are a few general discussion boards here on CSN: Young Cancer Survivors, Caregivers, and Emotional Support which may be useful.  In addition, a thread was started on The Colon Club message board for Wives of husbands with Stage 4 Colorectal Cancer.  The Colon Cancer Alliance website has some shared stories in the section entitled Never Too Young that you may find inspirational.

    You sound like an extraordinary young woman … working, grad school, three children, and caregiver for husband with stage four cancer … whew.  Breathe, strategize, put on your Zen hat, buckle-up, and keep coming back here so we can give you some deserved love and support.

    Peace. ~ Cynthia

  • here4lfe
    here4lfe Member Posts: 306 Member
    #7
    You need help

    Get your family engaged, church, friends, someone! You cannot do this by yourself. I was fortunate to be able to care for my wife pretty much on my own, but there were times when we needed help to get her to appointments, and having someone to sit with you during procedures was a big support to me.

    Best

     

  • Semira
    Semira Member Posts: 381 Member
    #8
    A hug from Germany

    Hi dear,

    my husband was diagnosed with stage 4 coloncancer (mets to liver) in Nov 2011 at age of 42.  He had surgery to remove tumor and mets, temp. ileostomy, 6 months chemo (oxi + xeloda) and another surggery for ileostomy takedown. Since then it is wait and see. In Sep 2013 the doctors suspected he had mets to the peritoneum but luckly this was not confirmed in annother surgery. Last CT on Dec 16 was clear. So we do the wait and see thing again.

    We have no kids (just 2 cats), so our situation is not the same as yours. So I cannot offer much help just a big hug from far away. You found the right place here with so many great people which offer support and so much wisdom. The last 2 years were a rollercoaster ride but this great board helped a lot. I am sure you will find the same support and many good ideas.

    All the best

    Petra from Cologne, Germany

     

     

  • geotina
    geotina Member Posts: 2,111 Member
    #9
    Starbuxgirl:

    This disease hurts us so called "empty nesters" as much as the younger generation for we had worked for years and years and looked forward to so many things that this cancer robbed us of.   It seems to me that you are burning the candle at both ends.  Yes you want things to stay the same but your husband has cancer and he is in the fight of his life and that must be the top priority.  Grad school can wait.  Kids can walk home from school or take the bus or ask a friend to do the driving for you.  Even young children can help with simple chores.  Above all, you cannot make your husband feel guilty for getting sick and making you overwhelmed.  All caregivers are overwhelmed from time to time.  I surely did not like being up at 2:00 am to change sheets, clean up the bathroom, etc. from the diarrhea resulting from chemo then going back to bed at a 4:00 a.m. only to get up at 6:00  a.m. for work but you do it, without complaint, because that is what a caregiver does. 

    My husband died from this disese and some days I wish I had that bathroom to clean up again if only to fill the long lonely hours without him.

    Tina

  • LindaK.
    LindaK. Member Posts: 506 Member
    #10
    Help
    I agree with a comment above, don't be afraid to ask for help, whatever it might be. Grad school will have to wait. Kids are resiliant, they can help out and hopefully will do so willingly to help their sick Dad and busy Mom. I am in my 50s and in the middle of a 4 layer family. My elderly parents need help, meals, rides and my grandkids need care since both their parents work nights and weekends. Caring for my husband has taken my priority right now. Our grandsons have become more caring young men helping and visiting their grandpa. My sisters have stepped up for my parents' care. I work full time and my husband is unemployed. I have been exhausted, sad, upset, etc. I started anti-depressants this summer when I got overwhelmed. It has helped me cope, I try not to feel sorry for myself. I sometimes get angry at people who just don't get it, but before we entered this world of cancer, I probably did not get it either. I know it's a cliche, but just take it day by day and know you're doing the best you can. There are many helpful people on this board, regardless of age, we are in the same boat. I hope you find some helpful info to help you through your husband's battle, I know I have.
    All the best, Linda
  • mdm2
    mdm2 Member Posts: 17
    #11
    Hi... My wife and I are

    Hi... My wife and I are rowing in the boat right next to you. I'm 32 just diagnosed on dec 1st. What is helping the most is our support system. Lots of caring folks have come out of the woodwork to help and it's hard to learn to ask them to do something but once you do a burden is lifted off of you. Take care and god bless. 

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #12
    geotina said:

    Starbuxgirl:

    This disease hurts us so called "empty nesters" as much as the younger generation for we had worked for years and years and looked forward to so many things that this cancer robbed us of.   It seems to me that you are burning the candle at both ends.  Yes you want things to stay the same but your husband has cancer and he is in the fight of his life and that must be the top priority.  Grad school can wait.  Kids can walk home from school or take the bus or ask a friend to do the driving for you.  Even young children can help with simple chores.  Above all, you cannot make your husband feel guilty for getting sick and making you overwhelmed.  All caregivers are overwhelmed from time to time.  I surely did not like being up at 2:00 am to change sheets, clean up the bathroom, etc. from the diarrhea resulting from chemo then going back to bed at a 4:00 a.m. only to get up at 6:00  a.m. for work but you do it, without complaint, because that is what a caregiver does. 

    My husband died from this disese and some days I wish I had that bathroom to clean up again if only to fill the long lonely hours without him.

    Tina

    Hi Tina.  I was just thinking

    Hi Tina.  I was just thinking the other day about how I miss those messes.  What I wouldn't give to have him back, messes and all.

    Chelsea

  • pluckey
    pluckey Member Posts: 484 Member
    #13
    You may want to call Imerman

    You may want to call Imerman Angels-

    They are a one-on-one cancer matching support 

    Started by a young man who was looking for people in his age group to talk to.....

     

    http://www.imermanangels.org/

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    #14
    It's draining.

    You need to ask for help. Is grad school a necessity at this time? Can it be postponed? Do you have family or friends who can help? Depending on where you live and how far the trip will be, you can call the American Cancer society to get the hubby back and forth to his chemo visits. 

    http://www.cancer.org/treatment/supportprogramsservices/road-to-recovery

    Please keep positive. He needs that hope to hang on to. My brother is 49 and is stage 4 rectal cancer. He had non-hodgkins lymphoma when he was 38 and beat that. Now he is dealing with this. He has been to hell and back again, but he keeps fighting. We all thought he was going to stop chemo treatment because he has been in and out of the hospital with setbacks, but he has the will to live, and as much as I hate to see him so sick from the chemo, it's his choice. I am behind him 100%. 

    Please ask for help because your husband and children need you now more than ever. You need to stay healthy and keep it together. We are here for you if you need to talk. It's very hard being a caregiver of a loved one. Good luck!

    Lin (sister of an intellectually delayed brother with rectal cancer)

  • DD3
    DD3 Member Posts: 136 Member
    #15
    pluckey said:

    You may want to call Imerman

    You may want to call Imerman Angels-

    They are a one-on-one cancer matching support 

    Started by a young man who was looking for people in his age group to talk to.....

     

    http://www.imermanangels.org/

    So right

    Pluckey beat me to the punch.  I'm a caregiver for my wife.  My wife reached out to http://www.imermanangels.org/.  Met some fantastic people that sure helped our journey. 

    This may sound selfish.  I apologize in advance for the people who have CRC.  But, being a caregiver can be physically and more importantly mentally exhausting.  I learned the hard way, you can't do everything.  Seems some days are harder on the caregiver than the patient.  I apologize again if I offended anyone. 

    Best advice.  Reach out.  Friends, family, cancer organizations, and people here.  I promise you... You are not alone and the first to go through this.

  • 1031
    1031 Member Posts: 1
    #16

    I'm 34 and my boyfriend is 36, he was diagnosed last June.  He was stage 3c and it was fortunately caught before it advanced to 4.  It's been a long, emotionally and physically tiring road for both of us.  Its been about 6 weeks now since he finished up chemo and had his last scan, which was clean, so officially he's in remission.  We've been together for over a decade and he is my best friend and the love of my life.  We don't have children, we have dogs, and I know how much work they take so I can only imagine the added stress and responsibility caring for your children adds.

    It's going to be a process, both of you will have good days and bad days and at times it will seem that the bad days are winning but as long as you remember how much you love each other, you'll be ok.  Right now we're going through all the emotions that follow being in recovery, all the anger and depression that has surfaced, the negativity about life in general, this part has been the hardest part to go through so far in our journey and everyone's path is different. I never imagined that good news (being cancer & chemo free) could bring on such  intensely painful feelings.

    The best advice I can offer in my humble opinion , is to take it day by day, each day will be different from the one before, each chemo treatment wont have quite the same side effects as the previous, you have to learn to roll with the punches, to improvise, to make the best of what you can.  You'll learn to pick your battles, enjoy the small things, and that very little is in your control, so try and laugh as much as you can because it feels better than crying. The one predictable thing about this **** cancer hand we've all been dealt if that there is nothing predictable about it.  Stay strong & Remember to breath :)

  • Sephyrob
    Sephyrob Member Posts: 6 Member
    #17
    Good advice

    Omg you just have really good advice. my husband is stage 4 and newly diagnosed. He has a rare form of  colon cancer. A carcinoid tumor that spread to one place, the liver. He's only 45 I'm 40. This is a whirlwind.  We have to see a specialist in Boston because our local onc may not be fully equipped. We're taking it day by day. Just wanted to let you know that your advice truly helped me. 

  • Shmoopie
    Shmoopie Member Posts: 7
    #18
    Hi Starbuxgirl

     

    I love your name!

    My husband just turned 32. He was diagnosed with stage IV colorectal cancer with multiple mets to his liver last March. Hes been thru 12 rounds of Folfox with Avastin. His PET scan in Sept showed that there wasnt any cancer cell activity in his liver so the onc decided to move forward with a colon resection on his primary, which had shrunk significantly from the chemo.  After a successful surgery this past Oct, his PET scan, in Nov, showed that his cancer was back in his liver. He just finished his 3rd round of Folfiri with Erbitux.  

    All I can say is that this is a rollercoaster. You have to keep on going.  You have to take it one day at a time and you have to make sure you're there for your husband.

    Swallow your pride and take other peoples help if you need it. I know thats been the hardest thing for us but sometimes you have to do it. 

    You guys will get thru this. One day at a time, stay positive, eat clean and keep faith. 

     

  • Nana b
    Nana b Member Posts: 3,030 Member
    #19
    Shmoopie said:

    Hi Starbuxgirl

     

    I love your name!

    My husband just turned 32. He was diagnosed with stage IV colorectal cancer with multiple mets to his liver last March. Hes been thru 12 rounds of Folfox with Avastin. His PET scan in Sept showed that there wasnt any cancer cell activity in his liver so the onc decided to move forward with a colon resection on his primary, which had shrunk significantly from the chemo.  After a successful surgery this past Oct, his PET scan, in Nov, showed that his cancer was back in his liver. He just finished his 3rd round of Folfiri with Erbitux.  

    All I can say is that this is a rollercoaster. You have to keep on going.  You have to take it one day at a time and you have to make sure you're there for your husband.

    Swallow your pride and take other peoples help if you need it. I know thats been the hardest thing for us but sometimes you have to do it. 

    You guys will get thru this. One day at a time, stay positive, eat clean and keep faith. 

     

    I worked all through my

    I worked all through my treatments, with a two hour commute, very draining, but I was still able to run the house for the most part  I spoiled my husband all through our 25 year marriage and he can't boil water and although he helped with a few things around the house it was up to me or leave it for the next six months. 

     

    What is your situation

     

    husband working and tired, some things may have to be put on hold

    hudband not helping at all, laundry can be folded sitting down

    husbands chemo is totally wiping him out.  Talk to ONC. 

     

    You have a lot of suggestions here.  You can do it. I'm 55 and I had my 80 year old Mom living with me, she had cancer in her leg and went through radiation. She passed away last month.  I also had my 5 month old grand daughter to take care of. Get the kids to help. My 5 year old granddaughter runs around the house fetching things for me. 

     

    My sister did at times cook us a meal, or come clean my house.  

    Take care.

  • devotion10
    devotion10 Member Posts: 623 Member
    #20
    Starbux girl has not been back on the site since 15 January ...

    I read all these very kind and helpful comments from all our friends ... and I feel sad that the individual who posted seeking help is seemingly not reading them or responding.  I imagine that is the nature of forums like this.  I did send her a pm alerting her that there were shared stories that may help her feel more hopeful ...

    Peace. ~ Cynthia

  • Nana b
    Nana b Member Posts: 3,030 Member
    #21
    devotion10 said:

    Starbux girl has not been back on the site since 15 January ...

    I read all these very kind and helpful comments from all our friends ... and I feel sad that the individual who posted seeking help is seemingly not reading them or responding.  I imagine that is the nature of forums like this.  I did send her a pm alerting her that there were shared stories that may help her feel more hopeful ...

    Peace. ~ Cynthia

    She may be reading them.  

    She may be reading them.   It's tough when you are maxing out and not sure how to move forward.   We all have different limitations and capabilities in different areas. 

     

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