Just joined (hello and rant)

Scream

Hi - I'm not sure if this is the right place to post this, but I can't find a "new members" forum so here I am.

My husband was diagnosed with kidney cancer in September, had the kidney removed in October, and during the surgery we found that it had metastasized into the lungs and abdominal wall. He is on Sutent for the cancer and appears to be doing really well in that area, but other effects of the disease may kill him before anything else does.

One of the results of the metastasis is that the abdominal tumors "weep" into the abdominal cavity, a condition called ascites (please forgive me if this is old info), and he has to have a paracentesis procedure periodically to drain the fluid. The fluid draws protein from his body and during the paracentesis he loses up to 100 grams of protein, which can be partially (but only partially) replaced by an albumen IV. Our first oncologist (now fired, thank God) let the ascites go so long that the pressure on his stomach caused acid reflux and esophageal erosion, which was invaded by an opportunistic herpes infection. We didn't know about any of this, and the resulting abdominal pain and pain and swelling in the esophagus made it difficult for him to eat, causing dehydration and further weakness. Needless to say, the swelling from the ascites also makes it hard for him to eat.

I finally broke down today because this is the third weekend in a month that he has spent in the emergency room because he did not go for a paracentesis on Friday. I went with him the first two times, my son took him today. I am really trying to be helpful and supportive but I don't know how long I can handle this. I was up until 2:00 this morning with him because he was in so much pain from the ascites. I am under a lot of stress at my job, and I have to keep working because my husband is self-employed and while he can't work mine is our only income. My insurance is also covering his treatment.

If I don't have weekends, I can't clean, grocery shop, or take any time for myself. My Christmas tree is still up and my house is a pigsty because I am in a stupor all the time. When I *am* at work, I can't concentrate. I am a member of a gym but find that less and less do I have enough mental energy to get myself there, even though I know it would be good for me. I am seeing a psychologist but have very few friends and feel uncomfortable burdening other people with this anyhow. I am just so tired and I know my husband is worse off than I am so I feel guilty about being tired and impatient and don't know what to do.

Cindy Bear

Hi
Hello and welcome. I am so sorry you have to be here for your husband, this is the place to vent and rant and rave and cyber scream. Cancer sucks, it really is hell, whether you are the patient, caregiver or a survivor always waiting for that "other shoe to drop" You mentioned Ascites and that caught my eye because I've read a couple of other posts on that very same subject today. On the ovarian board (ascites is very common with ovarian cancer from what I understand) and a post on the liver cancer discussion board.. I think it's under the heading of 'not ready to give up yet' (a recent post) anyhow, one of the ladies there was saying that they gave her husband albumin for the ascites (in addition to draining I believe) and that egg whites are very high in albumin. They told her to hard boil eggs and get him to eat 4-6 egg whites a day and she said it seemed to help. Just wanted to pass that on.
Hugs,
Cindy

bluerose

Hello there and Welcome
First off I want to say how sorry I am that you and your husband are experiencing all of these great difficulties. On this board many of us have been through similar issues so just want you to know that we understand and you are in the right place for support and information.

First thing that jumped out at me is that you really need some home support. There are often respite situations you can possibly access from your Cancer Society, someone to come in and be with your husband while you do what you need to do outside of the home or just get away for a quiet lunch with a friend to recharge. Even to just go and have a good long nap. Too they might be able to send over someone to help you with the housecleaning too, I am in Canada so I don't know what services are available to you in your area but there has to be something. Start with the cancer society and see what they may have in services to give you some support at home.

Your feelings of feeling bad complaining because your spouse is the one with cancer are common for caregivers but there is no reason to feel bad - cancer hurts the whole family - each in different ways. You need time to yourself and a little time away from the home too, it's important to recharge yourself as I said before.

If the cancer society can't help you the other ideas would be to contact any volunteer agencies in your area or if you are part of a church sometimes they will put together a group to help your family. A member might come over to just be there in case you need to go out or someone migth come to help clean the home or do the laundry or both. There are many volunteer agencies out there. You are only one person, you cannot do this alone and work too or you will burn out and then what good will you be to anyone, especially yourself and your hubby?

I am a 23 year cancer survivor and I found I was too stubborn to accept help from anyone the first time cancer came calling and the second and last time it did I turned down no one if they offered to even go to the store for me or bake my family a dessert for dinner that night. Accept help.

If your family is close and supportive think about asking them to take 'shifts' too to help that would be a better first start but I don't know your family situation of course. I am sure there are many friends/family who don't know what to do and you could give some of them a little bit of time to take off of your busy schedule to help your husband.

You really have to know that you can't do it all alone. It's a mistake many make and they burn out, my husband did when I had cancer and he wound up having a nervous breakdown just when I started to show signs of recovering. Don't let that happen to you.
You said you didn't want to burden anyone but you have to start asking for help. I bet they would be more than happy to do that. Some people don't know what to offer in the way of help and they say 'if there is anything I can do let me know', well let them know you need an hour or two to go to the gym to recharge - they will come through.

I am glad you are getting help through a psychiatrist, maybe she/he has some ideas as to respite resources for you in and around your area. Also with the gym, get there anyway you can to just get away for a few and work out your frustrations and fears in a healthy way.

I hope something I said has helped you figure out how to get through this but let me assure you that no matter what, you will get through this. Hopefully you have faith to lean on or at least family members who are close to give you the support you and your hubby needs.

All the best and keep posting.

Blessings,

Bluerose

3Mana

Take time for yourself!
I don't blame you for being stressed. You have really had it rough with your hubby and all the problems he's had. Please try and have someone help you! It's hard having to go through this and it sounds like you don't have a minute to yourself to do anything. I'm glad you're seeing a psychologist cause talking to someone helps. Are you on any meds to help you deal with this? I never wanted to take drugs cause I thought I'd get addicted, but my counselor said it's only going to help you go through these horrible times.
I lost my husband last March from Lung cancer. Well actually, he had a rare side effect to Avastin after only one treatment. He had just been diagnosed in January so didn't even have time to get used to the idea that he had this disease and then he died. We were married 46 years and he was the love of my life.
Please don't feel guilty about being tired & impatient, we've all gone through it.
Don't know where you live, but if I was close by, I'd come & help you.
Everyone on this site understands so please talk to us if it helps.
Take care!! "Carole"

Noellesmom

Christmas tree
First of all, you do realize it is only ten months until Christmas, Scream, don't you? In the busy lives that we have as caregivers, that's barely time to turn around and start baking cookies again! I say hang shamrocks on that tree this month, little umbrellas in April and flowers in May and so on. Before you know it, it will be Christmas again!

All kidding aside, drape a sheet over the tree and forget about it. It is not important.

But YOU are. You know you are the cement holding the situation together. How frustrating that your husband didn't take the option of going in on Friday for a paracentesis when he could have. I know it is difficult for him but one thing we have all noted is that a cancer patient must work hard to remember that the cancer isn't the only thing going on in this world, even though it is very important. For whatever reason, everything becomes all about the cancer. It just seems to suck the life out of everything else if we are not careful.

Please find some way to take care of yourself, Scream. I mean that. It is so important. Just a short walk around the block will help. My husband enjoyed short walks during his cancer treatments and it helped both of us.

Come back here often - we are hear to listen and lots of people have great advice.

Hugs.