The roller coaster ride of cancer

3greatkids · July 2006

Hi to everyone,
First, thank you for all of the wonderful information we have received from this site in the past year. We have learned much from you people. Myself as a caregiver, and my husband as a patient. Quick recap, dx. last sept. stage 3, chemo/rad. then emergency ilieostomy, surgery for removal of tumor, 6months chemo, now NED, and just recently reversal of ilieostomy. And thus, this brings us to our newest and worst problem we have encounted to date! The reversal has been a night mare. The reversal was 2 weeks ago, sent home after 5 days. My husband had severe pain at home, so we went back up to the hospital 3 days later, and he was admitted, due to blockage. He had to have a NG tube, literally NO control over his bowels and was completly devestated. He is now back at home after 5 days, but this has now taken its toll on him. I am so sorry for rambling on, however I need advice. This poor man has been through hell and back and who am I to complain about his behavior, but I don't really know what to do. He has basically stated that I do not realize what he has gone through and that as soon as his life gets back to normal he is going to do what he wants to do, because he has missed out on so much this past year. He does not want to be involved in the kids extra curricular activities because he now just wants to be able to up and go to wherever he wants to. I feel selfish denying his this, however I am caught between a rock and a hard place....there can be no compromise. Right now he is so frustrated that he can not leave the house for long due to the reversal and having to be near a bathroom, that he is making life awful for the kids and I. Then I start thinking "well he has that right, with what he has been through", so I try and go out with the kids, but then he gets upset with me, because I am not spending time with him. Last week he said "I still love you but not sure if I can live like this (meaning that he wants to live life to the fullest, with no baggage). This is a second marriage, so my kids are step-kids....this whole cancer sure has taken a toll on him, and only in the past 3 weeks is it evident. I am terrified of the outcome, but also of what it is doing to me. I know that is very trivial compared to what he is going through, so of course I would never mention it to him...I am sure he would just think "walk a mile in my shoes" and I know that he would be right. Anyhow, this is such a long post, but I am feeling SO down these past couple of weeks...I guess now that everything has been treated I to am feeling the after affects. Going through it all you don't really have time, what with appts. and surgeries and all. Has this happened to others, depression after things have begun to settle down. I sort of assumed that it would be before treatments or during. It kind of sucks because now I feel as though I have failed him as a caregiver, I don't think he feels I was there for him through all of this, and the problem is I was and have been 110 percent.
Anyhow, thank you once again guys...you're great.
sylvia

Patrusha · July 2006

Hi Sylvia,

Chin up! I am venturing a guess here from the patient's point of view. And since I'm a patient, I think I can do that somewhat accurately.

I understand where your husband is coming from. No matter how much others support you it is still hard not to feel "alone" in this battle. There are demons inside us that we deal with and slay on a daily basis. We don't always share these emotions with our caregivers (in my case, my wonderful husband) because we don't want to burden them.

We also start thinking about the "what ifs" and regretting those things we wanted to do but haven't until this point. You just want to be "free" of the sickness, the hardship, the emotional roller coaster. Sometimes it can generalize into feeling we just want to be free of every responsibility.

But I think it is a phase. I think as your husband gains control of his bowels (and I hope others who have been there can give you some encouragement on this)... he will settle down.

I know this is hard on you and the kids. While it isn't fair that he takes his pain out on you, I have struggled with the same thing and have to work hard not to be short with my loved ones on the bad days.

I also understand you taking time away out of the house, too, to avoid the abuse and have time to yourself... you need this. Unfortunately, while I understand my husband needs to get out and take our 12-year-old out, it gets lonely and I can feel very left out.

I think you are wise not to point out to your husband all that you are doing and make an issue out of it. However, a gentle, loving talk about what is going on inside him might release all the tension he's feeling and help him stay in touch with you and the kids emotionally. Some days I just wished my husband would put everything aside and just come in the bedroom, watch some TV with me and hold my hand. I didn't care if the dishes were dirty or no clothes were clean. I just needed him by me. And when he would do that, and we would talk, we would "connect" and I'd feel much better.

Hope this helps.

KathiM · July 2006

I remember the frustration of not being able to resume life 'as it was' as soon as possible after my bowel resection. I then had a terrible pain....bowel obstruction, that landed me back in the hospital with, just like hubby, an NG tube (ghastly!) and ANOTHER surgery cause mine would NOT clear....
This IS a phase with him, I was so mad...I would verbally strike out, and then apologize for my behavior. And then, just as things were getting better, along came my breast cancer. Well, that tore it...I was devastated.
I agree with another's advice that you need to have a gentle talk with him. REGARDLESS of what you might think, this cancer has affected you, too....you have had to eat, sleep, breathe it...on top of which YOU have had to watch helplessly when he was sick from chemo, recovering from surgery, etc...he needs to know that.
If you want, read my Caregivers Bill of Rights on my page....many caregivers have found support in it (I was a caregiver before becoming a patient...it's a MUCH harder job!).

But, this too will pass... and the BIG THING he seems to be missing is that he is now NED!!!!!!! Many of the posters here would do ANYTHING to hear those words!!!!! He has BEATEN the BEAST...the rest is just fluff to get thru!
Hugs to you, and to hubby.

Kathi

Moesimo · July 2006

I couldn't wait for my reversal. I tolerated my ileostomy because I knew it was temporary. Everytime I looked at it, I thought , I won't have this for long. So when I was given the chance to have it reversed after only having it for 8 weeks, I quickly signed up for the surgery. I was told I would be in the hospital for 4 - 5 days. Well I was there for 2 weeks and missed my son going off to college. I remember thinking I don't care if I have to go to the bathroom a hundred times a day. Well, that got old fast. I never got good control back and I lived my life around bathrooms. I went back to work, but was afraid to do anything else. My bottom was so sore. I cried daily. I remember days when I couldn't walk to the mailbox at the end of the driveway.

My husband would ask me to go somewhere and I ususally didn't want to go. He would say, they have bathrooms there. I had so many accidents and when I had to go it was right away. I could have been in a bathroom and not made it. Life was awful.

I really feel for you and your husband. I am sending hugs your way.

Your husband is still early in his healing. I hope it gets better for him. I know it is tough to be sick for so long.

I never thought I would get better. I finally started feeling better after I had surgery for a colstomy. I am not saying this will happen to you husband, because I don't know of anyone else that had to have a colostomy done. For me it worked and I have my life back.

Please email me through this site if you want to talk.

Maureen

PS And yes this is quite a roller coaster ride.

spongebob · July 2006

Morning, Sylvia -

Just some thoughts...

From a male perspective, losing control of your body (cancer, bowels, feeling ill, inplanned ER visits, surgeries, etc.) is absolutely devestating. I remember when I lost control of my body - it wouldn't do the things it used to be able to do. It let me down. I think it is probably an ultimate low-point. My suspicion is that your husband is there now. His desire to "do whatever he wants to do" is a way of reclaiming control over his environment. It's a way of assuring himself that he is the master of his body and his domain. For many of us, that's an important thing.

I would bet that he will be OK once things start working again. I would venture to say he is frustrated right now and probably frightened that this condition will be permanent - anger is a contrived "emotion" that masks real emotions.

You could try talking to him and finding out what he's really feeling and then addressing those issues. Reassuring him that this condition is only temporary may help. Asking him to "help you" by doing things that you know he can do that you "can't" may also help him reclaim some of his perceived "lost" manhood.

My gut reaction is that this is a temporary thing and as he slowly gets better, his attitude will improve as well. In the mean time, heed Patrusha's advice and keep your chin up. This too shall pass.

Know that you can always come here and vent to us!

Be well.

- SB

3greatkids · July 2006

Thanks for another viewpoint other than my own, guys:)
Today is a new day, and I guess one day at a time is the best approach. I realize the anger he is feeling, not being in control of his body, and I will hope as you guys have stated that this will pass. In the meantime, I will just give space when needed!
Thanks

cherriann · July 2006

hi sylvia,
you can complain for yours is one of the hardest jobs. i have been on both ends, a caregiver and a survivor. i know that it feels like a thankless task sometimes but in the end hopefully it will prove to be worth it all. sometimes now i get so jealous of my husband who can go where he wants while i sit here. its been a month since i have been anywhere except for the doctor and it does drive you crazy and you can say things you really dont mean. i hope that is what he is going thru and he sees what a support you have been.hang in there and stay strong.
cherri

kangatoo · July 2006

cherriann said:
hi sylvia,
you can complain for yours is one of the hardest jobs. i have been on both ends, a caregiver and a survivor. i know that it feels like a thankless task sometimes but in the end hopefully it will prove to be worth it all. sometimes now i get so jealous of my husband who can go where he wants while i sit here. its been a month since i have been anywhere except for the doctor and it does drive you crazy and you can say things you really dont mean. i hope that is what he is going thru and he sees what a support you have been.hang in there and stay strong.
cherri

Hi Sylvia. I think that Spongebob is on the tight track here(he is seldom wrong). I will impart a bit of honesty here. I am fortunate to be NED for over 2 years and yet now I find that tomorrows scope is getting me down. Truthfully...I SHOULD be positive...and Jen reminds me to be. But the past week I have to admit that I have been on edge and I also admit that I have become very impatient. I have been nasty(yes...I have) to Jen at times and irratable. I don't want to be this way because as many of you know Jen and I after 32 years are very much in love. So my honesty here, although an embarrasment to me for the way I have been with my mood swings might help you to understand that the fear is always there. Sure Sylvia...I will probably be fine when I get some good reports tomorrow. But there is no getting away from the fact that even for "trivial" events like a colonoscopy I worry big time. Nothing compared to what your hubbie is going thru but nonetheless to me these testing procedures change my character....I cannot help it...and am ashamed by it. I only hope Jen understands...I think she tries to.
Ross n Jen

vinny3 · August 2006

You have gotten alot of good advice here and are a heroine for all you have done. It is devastating when one loses control, like with the bowels or a leaking pouch, and it causes us sometimes to not react the way we would like to those around us. All I can say is it will get better. Either through healing and time like for some or something like a colostomy like Maureen and myself. Even before I had been diagnosed with cancer I had some problems with urgency and several accidents (one in Paris-very humiliating). It is nice, for me now, to have the colostomy as it has made some things easier ( I never have to worry about going into a strange bathroom and finding a dirty toilet seat).
Just hang in there. My wife and I just celebrated our 40th and I hope to make it to the 60th. I know it is very hard on her as she is not really getting the attention she deserves and I hope to rectify that when chemo is completed.
****

The roller coaster ride of cancer

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