Rough couple of days
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I have never heard of teaberry…..must be one of those East coast things. Maybe like the marshmallow fluff sandwiches my sister in Vermont is always talking about.
KrisV
Teaberry is my favorite. You can’t get a teaberry milkshakes at many places……
Good news. Keep up your spirits and your strength.
Carl
Thank you Percy, Lainy, Carl and Darla for all your support. Getting it off my chest seemed to help a lot too. He’s home from work now and seems to be doing much better. He even bought dinner on his way home plus he got me a blackberry milkshake which may not be roses but his way of saying sorry. Then he asked me if the car had gas in it for the trip to chemo tomorrow…..it does. I guess it’s in the past now and we move forward.
Thanks all again.
Wow Kris,
You have been through a lot lately, as if dealing with CC and all it involves isn’t enough. You have gotten some great feedback and advice so I will just say that I too was amazed at how some people did or didn’t react to everything. I guess unless they have been through what we have and are going through they just don’t get it. I agree with Lainy. The only ones you need to worry about right now are Mark & yourself. And yes, keep reminding yourself when these things happen that it is not Mark, but the disease. I know well that this is not an easy road to travel, but we are strong and can do it. Just take it one day at a time. And come here to rant & rage to vent whenever you need to. We all understand and are happy to listen.
Take Care.
Love & Lots of Hugs,
DarlaCarl, good to see you on here and nice for Kris to hear from another very kind man! Hope you are doing ok!
Yeah I know looking back on it I would have done things differently. I think I would have set up a Facebook and kept that updated….it would be all in one place and I could include Mark and TJ since both were going through things and that way I could keep both groups updated. I also would have turned Mark’s phone off as soon as he went in the hospital the first time. Once we got home spelled it out that there were NO visitors including family until after we had been home for 3-4 days. Upset a lot of people cause that included Father’s Day but I didn’t care. We both needed to rest. Even though I didn’t ask my daughter took the baby to some friends and they stayed for a few days. I was glad I did.
I still battle snide comments periodically…..most of them (mom and sisters) want to go to chemo and I have to say no. We are only allowed one person in the room and I am not giving my spot up.
I hope that if we ever get to the point of hospice that I can manage them through that…..I have a great hospice team that I work with and I know they will help. Sometimes I have nightmares about how that will go….not him dying but me getting shoved out of the house so it’s about all of them…..therapy is helping me with that.Kris
Hi Kris,
I wish I could say something magical. But the reality of this disease gets in the way.
You have been a terrific caregiver. The challenge of the caregiver is having to face all the same issues as the patient as well as then trying to stay on top of all that is happening so you can help/protect/support/guide/counsel/communicate/empathize and LOVE the person you are trying to help. You’ve done that and more.
It is so very hard when someone you are trying to help lashes out at you in a way that is more hurtful than they can ever know. While easy to say….please don’t take it personally. i.e. please let it go. What was said was most likely said in a mode of personal stress, guilt and probably even concern. It just doesn’t come out that way.
Stay strong. Your husband needs your ongoing support. And you clearly have the fortitude to help guide him along this very challenging path.
If you would like to talk more – or just vent – please reach out to me via email.
All the best,
CarlOMG, Kris, I went through that too. People we never hear from wanted to be in the ‘loop’. This is what I did. I stayed totally off the phone except for T kids who are all out of town. They were the only ones I let talk to him and of course me as they wanted to know how I was doing, but kept the talk short. And I am sure a part of them was just happy Dad was being taken care of. OK so, I made up a special email list. Every night about 8PM I sent a ONE email update to the whole group, family and friends. In the first I explained that my every minute was spent with T and doing phone calls everyday all day took too much mental energy with repeating and repeating and I was going to wear down. All accepted it on my terms and if there were remarks they never got to me. In fact one time T Grandkids pitched in and got me several massage coupons. Nice. Stay off the phone and try an e mail update to all in 1 email, nightly. It won’t take that long and all will be off your back. I think you can even save your own group so all you do is compose the message once. Oh, 1 more thing, as time went on and things were getting worse I let visitors come only 2 at a time and for no longer than 1/2 hour and I spaced the visits. T would have never done that but I know he appreciated that I did as it would wear him out. Hope this helps with the hint for future mental stability should you need it!
That’s it. I found out the other day (and yes this may sound a little petty and I can’t repeat what my daughter said because it was NOT g-rated) that several of the people that I had friended on Facebook that were mutual friends of ours (or so I though) had unfriended me because I did not personally keep them updated on his progress through the surgery and hospitalizations. I was stunned. Do these people not realize that he was SICK and I was overwhelmed with his care? Never mind that one I know the answer. If I had to personally keep every one updated….I would have no time for anything else. Of course these were the same people who thought I was being overprotective and hovering when I stayed at the hospital with him. No thought given that he really was not able to hold a phone or talk on one let alone even feed himself. Some people’s kids….
Kris, I have a good son, 52 lives in Milwaukee. He is not patient with illness as he has never gone through anything. He called yesterday and asked how I was and this time I told him what I am going through and he starts in with positive attitudes and this bs and all of a sudden I said, “Phil, if you don’t want to hear it, don’t ask me”. He was just stunned as I never talk like that to the kids. So hopefully that will keep him quiet for awhile.
As for the family of his they should have more compassion having been thru something themselves. You are lucky you got the loving one. Bottom line there are only 2 people that are important in this whole world and that is Kris and Mark!Lainy – just read yours after I posted to Percy. I realize it’s a control thing and I knew it when it was happening it just caught me so off guard because he is usually more like your Teddy…..apologizing when there is no need to. I said the same vows he did….in sickness and in health. I didn’t really think about it until I talked to the ONC today but we are looking at the midway scan (which has been pushed until November instead of this week). I suspect there may be some fear related to that. I found of from the ONC today that there are two lymph nodes that they are concerned out. Hmm, I had no idea. I guess they told him when he was in the hospital last time when I was stuck down here in the hospital. So that is adding to it to. ONC promised that he would call me too and keep me updated on things since it appears Mark is trying to protect me.
As far as his family goes you are right…..I just stop answering their calls. They are going to blame me no matter what happens because that’s the way they are. His mom always says he just needs to buck up and get over it when we say we aren’t going to do something because the colder weather is bothering him…..she has gone through cancer treatment and says it never bothered her. I want to strangle her….yes she did cancer treatment and her only treatments have been surgery because she did one round of chemo for colon cancer and didn’t like it so she quit. She got lucky that surgery was enough. To compare one cancer to another is like apples to oranges.
Thanks again for the vent.
KrisV
Thank you for that, especially coming from more of my husband’s point of view. I think what made me the most upset was him telling his family that he was quitting because of me (his family already doesn’t like me and never has). It’s just going to worsen that relationship.
I did talk to his oncologist for a bit today. He called to see what was going on after the canceled then rescheduled appt. I told him what was going on. He wants to see him Friday as usual but he asked me to leave the room so they can talk one on one and then have the social worker come in.
I agree too that it is out of his control and that the loss of control sometimes makes us lash out at those that we love the most. I tell my own patients that all the time….so I guess I need to take me ow advice and remember that it is the disease talking not him….I will keep how hard that is in mind from now on when I tell my patients that.
Thanks again for listening.KrisV
Kris, I have tears for you because there is not much you can do as you know this is not Mark. Teddy never did that but he would keep apologizing to me for what was happening to him and that I had to take care of him and when I think now about what he went through and he is apologizing to me I would just cry. As I said this is not Mark and I would let the ONC know as maybe his ammonia levels are too high. His family can go take a long walk off a short pier!
I am so glad when Percy answers these kind of posts because he is not only knowledgeable he is also giving a man’s view. A very smart man and also very kind.
The best I can say besides calling the ONC is to just let it go. Kris I know it could be Meds too as I feel sometimes I am going over the edge with this Remicade. In a way I am learning more how others feel on chemo and will understand better.
You came to the right place to vent and please never stop, sometimes its good to pound it out on a keyboard and we are here. Finally, you are working, you are taking care of Mark….let the idiots go! I feel your daughter did the right thing, I am sure she felt you could handle him better. Hang in hang on!sensitive subject, do not read if you are not up to it or you have never read my post before
Hi,
First, take good care of yourself,you are the glue to hold the family together and I knew you have tried you best in caring your husband.
As you have known, CCA is a roller coaster ride that mostly inclined to go to the other side of unhappy ending rather than the happy side of ending.
In some way ,I think what your husband did is “normal but frustrated to himself if he had a bad day.”not to mention how he feels” he is helpless to correct the situation,he is powerless again his own disease.” In a way, we lost our manhood to provide, to protect and be an anchor to the family that both a husband and a wife have created .( sorry, I am an old fashion kind of guy, forgive me if I say something inappropriate.)
My suggestion is telling him to hang in there till the 6 month chemotherapy ends in Feb. after that, everything is up to his own decision,including not to be treated. I indeed shared some of your husband’s anger and feelings. The one thing that still keep me relatively optimistic is ,like you, I am also a medical professional working in a hospital environment.
I am a patient of this disease for 54 month, I did research, I tried my best to be on the top of this CCA, I seek and try options after consulting with the best doctors I know.
But deep down, I know the cure or the easy tolerated and effective treatments may not be in time to save me and most of the patients that have or will have this CCA in the near future.
God bless.Okay, I just need to vent for a moment here and I know this is the best place to do it since no one will think less of me for it.
Mark is driving me over the edge right now. I got sent home from work yesterday because all I could do was cry and then they gave me a mandatory low census today so I could have a few days to recover.
It started when he came home Tuesday. He was nasty angry and lashing out at everyone including our 14 month old grandson. Bless my daughter for just loading the two of them up and taking off to a friends but she left me with him. He proceeded to announce that he was done with chemo, done with treatment and he was just going to “let this crap kill him.” I was stunned by trying to supportive so I asked why thinking maybe he was having some sort of side effect he didn’t like and that he hadn’t told me about. He said it was because it was what I (meaning me, his wife) wanted. I was stunned to silence (and anyone that know me knows silence from me never happens). When I could finally wrap my head around it, he said it was because he knew I was tired of driving back and forth for chemo and tired of all the hospitalizations and on and on and on. I tried to talk with him about it but realized he was in no mood. He then texted his entire family the same thing so then my phone blew up with all them yelling at me for being so selfish……I finally quit arguing with them and turned off my phone. When we got into be he pulled all the towels and sheets off his side of the bed that we use to deal with the night sweats and he said he was tired of this “shit too” and crawled into bed. Then of course soaked the bed and yelled at me for removing everything. I just changed to bed and crawled in on my side. I think I finally slept a couple of hours.
Very little sleep then went to work where they sent me home. I spent the day keeping busy….cleaning, doing laundry, all that stuff. He came home just dinner was finished and he acted like nothing happened. Later on he asked me why I was being so quiet and what was wrong. I told him about the evening before and he denied all of it….I had to show him the texts on his phone and mine to prove about his family. He still doesn’t acknowledge about the sheets. He was the same old Mark last night.I can’t tell if we had a moment of chemo brain, maybe his ammonia level is up or he was just frustrated and took it out on me. He’s been a little disagreeable at times but not this. I found out today that he canceled his chemo on Friday but Jodi who does the scheduling call me to make sure and I told her no…..keep it we would be there.
Just driving me crazy. There’s just a little tiny bit of me that wants to say fine quit the chemo, see if I care…..very tiny but frustrated part.
Thanks for listening to me vent.
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