CSN Login
Members Online: 0

You are here

Coronavirus/COVID-19

What cancer patients, their families, and caregivers need to know about COVID-19.

Am I selfish?

Bambiza
Posts: 3
Joined: Jan 2017

Hi, my 48yo husband was diagnosed with stage IV colon cancer over 2 years ago. We've been married for 6 years and we have a 6 yo daughter. I moved here to the US from Europe 5 years ago. I have no family here. 

So far my husband was taking chemo really well- the only side effect was really fatigue. But usually 3-4 days after chemo he would be back to "normal'. He's the only provider for our family and never stopped working full time ( his company is really supportive). I recently started working but only few hours a week.

About month ago things changed drasticly. My husband didn't get back on track after his last chemo session before Christmas. He lost his apetite completely, he's very weak and sleeps pretty much 24/7. So far he was so positive that he was inspiration for his healthy friends. Now, he barely speaks to me. How are you?, Did you eat? Are you in pain?- that's our conversations... He doesn't even pay much attention to his beloved daughter. He's such a great father and he used to spend every minute he could with her, even when tired. When doctor suggested that he's depressed, he got realy upset. He said he has no reason to be depressed because he's still alive. He says he's just frustrated. I don't believe him. The doctor gave him somethig that's supposed to open his apetite, help with sleep ( he's been struggling wth that too) and also help with depression. It's been only few days sine he started taking it...

We are in a difficult financial situation. I've been taking care of our daughter for the last few years and started lookng for a job just recently when she started kindergarten full time. I'm working only few hours a week, still looking for a full time job but it's really hard. Especially that I'm my husband's main caregiver,  I take him to all his appointment, take care of our dauhter, hausehold...I know finances weigh heavily on my husband. I feel very guilty that I don't bring significant income home.

As I mentined I don't have my family here and my husband's family seems to be in denial to me. I feel very lonely in this journey. I've had depression tendencies since I remember, but only recently I started taking medication for that. Last Thursday I had my very first panic attack when I couldn't breath and I just couldn't stop this bawling, like an injured wild animal. My daughter got scared... I'm terrifeid. I'm overwhelmed. I worry about everythig. I see my husband fading away. He's not the same person he was only few weeks ago. More and more often I think I'm losing him. I sometimes feel he's gone already- he sleeps 24/7 pretty much. He's not invloved in anything what's happening around him. Except his work- he still tries to go to the office as much as he can. Although recently that sent him back home few times, since he was so weak... What am I going to do when I'm alone? I'm only 37. We went through A LOT to be together and only for this sh*t. Our life doesn't look anything like it was supposed to. I miss my husband, my best friend, my lover. I'm so disappointed. I hate my life. We've never been on any family vacation. I am so angry. At everythnig- even my husband. He sees that. I doesn't help... Strees makes his condition worse. I yell at my daughter. She's so brave. Helps taking care of his daddy as much as she can. And I'm angry at her.  And I hate myself for that. How can I be so selfish? How do I stop that? I should cherish every day we have together. For some reason I just can't overcome this irritation and anger, and sadness... 

What I'm writing is so chaotic, I know. I hope someone will understand what I'm trying to say here... 

 

 

 

 

Noellesmom
Posts: 1862
Joined: Aug 2010

Overwhelmed, yes.

Cancer patients go through highs and lows during treatment and sometimes after. Don't panic.

You need some help. Do you have friends or a church you attend? Start there. Go for a walk, get out of the house. Breathe.  All will be well. 

Go see your own doctor and for goodness sake get one if you don't have one. Tell her about the anxiety attack. There is help.

Remember you are not alone.

 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

I totally agree with Noellesmom. 

Not to mention, cancer patient's caregivers, moms of kids starting school, people looking for work, moms trying to juggle family and work (on a good day) have highs and lows. 

When you're having a day where you're NOT having a panic attack, spend some time with your daughter (which I hope you're able to do every day, reading, cuddling, talking, playing, or whatever) and let her know that (1) you're OK, (2) you love her a bunch, (3) her dad loves her a bunch, (4) and even though scary things may happen (Dad being sick, Mom crying or yelling) you will still love her and will take care of her.  Find out how she's doing and what she's thinking, too.  It's great she wants to help take care of her dad. Be sure that she still gets a chance to be a kid, too. 

Do connect with other people -- church, a caregivers' group, a moms' group, friends -- that are supportive of what you're going through. 

This is a good place, too. 

MyNewNormal's picture
MyNewNormal
Posts: 15
Joined: Oct 2016

I totally understand what you are going through. I have seen my once physically active strong vibrant husband got to where he gest winded takng a shower. I also understand the anxiety attacks. I too get those. When I am talking to someone, my doctor yesterday, I start to not beable to breathe and cant catch my breath. I just have to control my emotions and get past it. When they happen just try to contol your breathing, close you r eyes and just image the air coming in the way ot should and your body will calm down.

My sugesstion is to find someone you can talk to, even a doctor,a priest someone who will just listen. I am so sorry you are alone, I cant imagine how hard that is. Take care and we are  here.

Bambiza
Posts: 3
Joined: Jan 2017

Thank you for your support.

Last week we got results of the last CT scan. Everythnig got worse. Spots my husband had- grew larger, new appeared on the liver. There isn't much doctors can do anymore. Maybe just pills that could stop the growth for a bit. Or clinical trial. But I feel my husband has too much of a cancer inside him for the trial. 

He had his last treatment just before Christmas. He never got back to "normal" after that. - he usually would go back to work 3-4 days after that. Now he sleeps pretty much all day. Doesn't eat or drink much- only what we force on him. He doesn't feel hunger. On top of that pain in his lower back- not sure what from, but I suspect it's from the tumor which is on the lining of his belly. Pain keeps him from sleeping.

He is like half conscious all the time. Barely acknowleges our daughter around. Me only because I'm on his case with water and some food. Our daughter got very upset last night. She was crying saying "I want my daddy, I want to sleep with him". Heartbreaking.  I moved the matterace from her bed next to our bed and slept there with her. I felt she needed that. And I did too. I don't know what/how to talk to her about her daddy? She's super smart, so I'm sure she's noticed things got so much worse. She's seen me crying million times already. I try to hide it from her, but sometimes just can't. And believe me, I do EVERYTHNG I can to keep her as happy and innocent as possible. I organize playdates, take her to places as much as I can. But I give most of my attention to my husband. She does everythnig- good and bad- to get my attention. How do I handle this with her? I try to be strong. i try to laugh with her. I tell her I love her and Daddy loves her million times a day. I cuddle with her whenever I can. I tell her that Daddy wants so much to play with her, but his body doesn't let him right now. And we need to understand that and take care of him so he can get better. But will he? I hate myslef for losing my hope. It's the darkest time of my life. I'm scared to even think that, but... is it the end? It's like an awful nightmare. Sometimes just doesn't feel real. A month ago he was fine...

My mother in law said she found out about some clinics in Mexico? She didn't give me any detals yet- first she wants to find out if my husband would even want to try that. Does anyone know anything about that? She wants to try to take him there.... I gues we have nothing to lose. It costs so much money to get there though... 

Any thoughts?

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

So sorry to hear that these are some really tough times for all of you.  Are you in regular contact with your husband's care team? What are they saying should -- as well as could -- be done now?  Is there someone on the team who specializes in paliative care, which addresses pain and quality of life?

You are right. Going to Mexico costs lots of money. LOTS. You mentioned earlier that his family seemed to be in denial.  Are they aware of your husband's current condition?  If he is in such pain, could he even physically manage a trip there? Would he want to go? Would he want to go just to please family? Would you be able to afford transportation and lodgings for you and your daughter to go? I guess I'd kind of equate it with a trip to Disneyland or Disney World -- If you were guaranteed that a trip to the Magic Kingdom would cure him, I'm sure you'd probably figure out a way to make it happen.  If you were told maybe a trip there would cure him, you might still consider it. But cancer clinics -- even the nice ones -- aren't fun like Disneyland.  Travel can be exhausting on a fairly good day. 

I'm sorry mostly all I've done is give you a list of questions.  The following website (which is similar to the American Cancer Society, only in the UK) addresses researching alternative cancer treatments:  http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/complementary-alternative/looking-for-complementary-or-alternative-therapy-information-on-the-web

Keep us posted. Hugs, prayers, and supportive thoughts to you and yours...

Jerzy

Noellesmom
Posts: 1862
Joined: Aug 2010

It provides a level of support palliative care doesn't.

I am sorry your family is where you are in this journey.  Just isn't fair.

Don't wait to talk about hospice.  Let THEM do the evaluation. If it is not time, they will let you know.

Ladylacy
Posts: 770
Joined: Apr 2012

It has long been reported that the clinics in Mexico are nothing but scams.  You have to check them out carefully and I doubt if your husband right now could make that long trip.  Sorry but I wouldn't want to go to Mexico today -- too dangerous.  Too many have gone to them and have ended up dying anyway and spent lots of money.  Why would his mother even bring this up if she hasn't been any help until now when it is, and I hate to say it, in all likelihood too late.   I would ask his doctor about either hospice or pallative care.  My huband was on hospice for 22 months before he passed, our cancer specialist recommended it.   And have you applied for social security disability?  He would probably qualify without a waiting period as long as the doctor filled the form out correctly.  See if there is someone in your doctors offices that can help you or maybe a friend.  There is help you just have to look and ask for it.  Does your husband's company have long term disability, even short-term? 

Even though your daughter is so young, she knows something is wrong and she is scare just like you.  I have been there, but didn't have small children, ours were grown but my husband would never really talk with them or me for that matter about it.  He even lied to our hospice nurse and I would tell her that he was lying, even in front of him, mainly about his pain level. 

Yes it is very hard caring for someone you love and watching what they are going thru, but remember you must take care of yourself too.  And yes at times I lost my temper with my husband but always told him I love you, I'm just mad at the situation.  I, to this day, regret when I got mad about things and said the things I did, but he always knew I loved him and wasn't mad at him.  It is human nature is all I can say.

Wishing you peace and comfort

Callie24
Posts: 2
Joined: May 2017

When I read your post I felt what you were saying because I feel the same. I feel very alone. My husband sleeps a lot and our conversations are the same. He has become very distant. I keep hoping things improve.

Subscribe to Comments for "Am I selfish?"