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moving along
Hi its been a week since my husband is been in the hospital due to VRE, Vanco resistant infection in his bladder. So needless to say I am exhausted, running back and forth to the hospital. I hope he can come home today. They change his pain meds from oxycodone to methodone. So I hope this keeps him more comfortable.
We are also planning a trip with our son to Disney. And there are a lot of people who are inviting themselves to this trip so you can imagine. I originally wanted this trip to be about us three but it seems to be about a lot of other people so I feel a bit overwhelmed. For 8 months I’ve been alone fighting cancer, back and forth to treatments and hospital stays and now all of the sudden everyone (friends and family) have something to say or do with us. I like the help, don’t get me wrong, but sometimes I think that they are not helping. Also I have been bombarded with “cancer curing natural remedies”, there is so much that my head is spinning. I just want to run away and hide. Anyways, just a little venting.
Hope is all well with you all and thanks for listening.
Aimeth
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10 Replies
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Aimeth,
Here are some of my quotes to the family if we needed to separate ourselves, ” I think we are going to make it a early night, get some rest”
“” were sleeping in tomorrow so we’ll see you for dinner””, AND THE BEST ONE IS,”” “”Gene hasn’t had a bowel movement in a few days so were going to stick by the room for any sign of relief”” that one was true,,the lingering of b/c recovery, they are aware of the effects it has on the insides so they never question that one…Gene was a smoker for years, not a complete abuser, half a pack a day, maybe less, they harp on that one and never let it die, he quit of course, he also was in Vietnam , Agent Orange may be a factor, he filed with the government and may get a check from them monthly. Agent orange is recognized as a contributor to b/c…hope my quotes help you out…don’t wait until your 62 before you realize you can set limits with family, without rocking the boat!!!Ginger -
Aimeth,
I cannot tell you how many times I have had to bite my tongue (felt more like a bullet)»-(•¿•)-›, when others interject, play Dr. or invite themselves to our home. Relatives, Friends, alike in our case. I tell my husband first. I say: “so and so are coming over/into town on Thurs. what do you think? I wait for his reaction and then I get my cue…I let him make the decisions about who he wants to be around and who he doesn’t. I try very hard not to let my feelings about a person come into play »-(•¿•)-›, and let him make the call.. He knows who has been there for him and who hasn’t, who means well, and who is a know it all. He can say and be around whoever he wants in his position. The people are the same as they were prior to DX…It is just more annoying now…We are very lucky to have friends and family who are outstanding, wonderful people…We are very blessed…But the annoying ones will always be annoying!
Ginger’s advice about making time for yourselves is so true…If they MUST accompany you on you trip…bow out when you can to spend time alone…
.·:*¨¨*:·.Karen.·:*¨¨*:·.
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
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Aimeth,
This trip sounds like great fun, our trip to Vegas one week ago was a celebration , starting off 2008 with a new perspective..my younger brother and his wife and my older sister and her husband were all with us. 2007 was not good to us for many reasons. I can relate to your frustration with others jumping on to the band wagon to go to Disney. How old is your son??? Who wants to go with you??
Anyway it may be good to vent your feelings, but if not just approach it before hand decide to have a good time anyway and make it what you can, suck up the fun. Make it clear you want a few days by yourselves or evenings.. When in Vegas we met at dinner with our family members,then stuck together for the evening leaving the day open to ourselves..sometimes I can only handle a few hours with my sister, she seems to think I need her Advice because she’s older, I am 62, and capable, believe me!! so we just make an excuse to wander off..be creative, make it work..SET LIMITS ON WHEN YOUR WITH OTHERS, MAKE IT CLEAR,I had so many speeches from people who nothing about what we were experiencing, suggestions, blah blah blah,,,I say this is your trip, enjoy it to the fullest, and let the rest go!!!!Have an outstanding time,,,,I love Disney, hope to do it soon ourselves!!! Ginger -
There have been so many people that have helped us in little ways and big ways…Dinners dropped off, visits just to talk and listen…I don’t mean in anyway to sound ungreatful to those who know how to be friends…It is the out of town visitors that come in and try to change everything you have been doing…
It especially is annoying when these people rarely call, or ask how someone is…and then expect you to cater to them while they are here…I refuse to do this anymore…I just did this…They haven’t even called once since their visit….These are the people I am referring to…If they were so worried wouldn’t they call at least weekly? Out of Sight Out of Mind….
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
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I sure hope all the books and meals i’ve dropped off to people i really cared about were taken in the love i felt for them. I never made my visits long. And when i was recovering from surgery i was ever so grateful for the meals my neighbors and friends brought over even if i didn’t have an appetite.
When the son i had raised and lived in our house for 27 yrs until he married came down with testicular cancer at age 31…Mom was relegated to being an “outsider”…the wife of 3 yrs got all the information and made all the rules…thats ok…its just broke my heart. I was given times that i would be at the transfusion center to be with him and also to take him to my house every day when he was finished until his wife left work and would pick him up. All very heartbreaking…as i learned your child is always your child..doesn’t matter how old they are. So give them a tiny little break here..let them know if they want to visit they could be a really big help if they would prepare meals and help with the house….If i had lived out of town i would have understood that. Pat -
Hi Clara, That is well put all the “doctors” in the family. Funny!
Thanks for that, Aimeth
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aimeth,
All of the “doctors” in the family has been a problem with Bob too. He tells the oncologist that he has too many “doctors”.
I agree that if you want to go on a vacation without anyone else, you should do it.
Hang in there and keep venting any time you need to.
Clara
Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007 -
Yes, I should open my mouth and say something but I try to avoid any conflicts. Although, I have told everyone that his Dr is not comfortable with natural/holistic remedies. But it seems that my husband really wants to believe that something will eventually work. So I try just for him. But you are right I need to start telling this people to leave us alone. Thanks! Aimeth
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Family or not sometimes even though they are trying to be kind you gotta tell them how you feel. If you want to go to Disney the three of you just come out and tell them. And home made remedies just come out and tell them the Dr’s got you clear on what you need or don’t need. You can do this very easily without being ignorant by being honest and just saying this is hard for us but we are trying our best to handle things and will take some of your ideas into consideration rather you do or not. Cheers, Joe ;)
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Aimeth,
I can totally understand where you are coming from…My in-laws were in town (just leaving today actually)…they were driving my husband crazy with all of the things other people told them would help…escarole soup for constipation, have a beer it will help kidney function…yada, yada, yada…everyone wants to help I understand that, but where were/are they on the bad days? Where are they for the Dr. Visits, the nausea etc…when we finally get into a routine (as much of a routine as possible in these circumstances)someone says they are coming to visit…not to a hotel…at the house…adding cooking of meals, changing linens, straighting up, dishes, and longer hours to my already full plate….it is exhausting…I do understand that they think that by stopping by with a book, or meal, or suggestion they are helping…but a lot more goes into a visit than that. I am so tired….
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
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