kat in the Delta

[kat in the delta]

How do or did you feel after all treatments?? My 3 grown sons and husband think I should be back to normal, but I am not....chemobrain has taken its toll on my life...I am so much slower getting ready to go anywhere. My orginizational skills flew out the window...and my house is a wreck .....As a result, I get looked upon with scowling faces and frowns and the 3rd degree!! My family of men tell me NOT to talk about "anything" related to cancer-How can they understand me??.... I feel alone, but is there anyone else like me ?, If so, How do you deal with this????????? kat in the delta

[rinaina]

Your men in your family are not being fair to you. Perhaps some sensitivity training classes are in order for them! No seriously, someone other than you, someone they view as credible, needs to talk to them about breast cancer, chemo and post chemo. There is nothing wrong with you. All you are experiencing is valid and normal and part of the territory with cancer and chemo.

[Sandy H]

They just don't understand. Its normal what you are going through. I have the same problems. It does get frustrating and I feel at times what you feel. An example for me was just the past four days. I am in Florida and we just spent 4 days in Mississippi. Drove into New Orleans to see some of the hurricane damage. Well, I could not read the map and keep up with my husband driving-I was so slow at finding the streets. The map we had, was small, the streets were in fine print so had to use a magnifying glass because of vision problems from chemo. Many streets were one way and so we rode around the city three hours trying to get to the bus where my husband wanted to take the disaster tour. Guess what we missed the tour and so I felt bad because it was my fault I couldn't read the map, look at the signs, and tell him when to turn. He was very upset, hallowing at me saying all I had to do was read the map and tell him to turn right, left or go straight. I just could not do it. After it was all behind us and we were waiting to take the city tour he showed me the map and said its this easy this is what you do. He said I don't listen. How do you tell them, you listen, you hear, but you you don't comprehend it? So if anyone asks us how our trip was to New Orleans I will simply say it would have been better if the driver could have read the map and drove. Don't feel its your fault that is what I have to keep telling myself its not my fault my brain is chemical killed!! Cancer isn't the only issue here there are lots of others. I am sure you will hear from others. Don't get me wrong my hubby is a wonderful person and would do anything for me but for him to understand some of the things we go through when he is under stress, such as driving in lots of traffic, with one way streets coming at him, and meeting a time line really upsets him. Sending you a big hug, that is why we are here on this board. Right?? Sandy

[StephN]

Dear Sandy -
Nothing more frustrating than trying to be the "navigator" when you feel handicapped and the place is just as strange to you as it is to your other half.
It is always MY job to read maps - we got into that habit long ago when I was younger, had better eyes and a quicker mind.

Just get your hubby a Global Positioning device. They are great. You program in where you want to go and it tells you exactly where to turn. That way you only need to look for the signs or signals. A couple of my friends have them and they are named with female names and always referred to as "she"!

It will save you both a LOT of grief in the future when you go exploring.

KAT - Your men miss the "old" you, and it is hard to accept the "new" you. I just kept telling my family, there is no turning back and we all have to make some adjustments. When I need help in the house I hire someone in to take away the stress and get things done. Once you can "see daylight" it gets easier to manage.

[KathyH]

Hi Kat

I have 3 young sons and a grown husband. He is tremendously supportive. I can, however, completely relate to your difficulty in facing the expectations of other people. They want me to be a person that no longer exists. That is not a bad thing, in many ways it is a good thing, but it is a fact. We don't live very far from each other. If you would like to e-mail me, I would love to chat or maybe even have lunch if that is a possibility.

Blessings, Kathy H

[mslinda]

Hi Kat:

I can associate with you. I am two years out from treatment, and the more I read about chemo brain, I think that is me. I am no longer organized, and it takes me forever to get anything done. Unless I write it down immediately, I won't remember it. I feel like I am in a fog all the time. I have a really great husband, but he is tired of hearing about bc. So I usually keep it to myself. I don't know what to tell you, but hopefully this group is a big help. I know it is for me.

Best of luck from Linda in Lumberton, MS.

[tousled1]

I'm with the rest of you on this one. I really have a problem remembering things. My 2 daughters get so frustrated with me because they will tell me something and before you know I'm asking the same question again. They yell at me and say I've already told you that. Also I have trouble remembering if I called people. I've learned that keeping lists is helpful. I'm hoping that this stuff going on in my brain will ease up because I used to be the most organized person. Now I feel like a scatter brain. You are not alone. I think what happens is that once you start to look more like your old self people around you think that everything is back to normal. Little do they know!

[KellyA]

Hi Kat,

I can completely relate to how you feel. I am the only woman in a house of five myself (we have three boys), and I was outnumbered and "misunderstood" before cancer, let alone now. My hubby has been my hero through all of this and my boys all pitched in to help, but I have noticed that since treatment is over, and now that I am looking a little more like myself, that they think everything is back to normal. Even my co-worker, who is like a sister to me is frustrated with the new me. I was always very quick and on top of things, and the one who kept everything in order and now I am like a senile, confused, aching, slow little old lady. She keeps saying, "what's wrong with you Kelly....."
Geeeee... I WONDER...... maybe it was the six months of getting poisoned, or the two months of frying......or the fact that I have been completely traumatized.....

While we are venting :-) , let me add one more thing. You know that annoying reference to "must be that time of the month" every time a woman is crying or angry? Well now that that doesn't apply anymore (chemopause- I don't dare let them know THAT word exists!), now its "Honey, have you been taking your Lexapro???" Can you believe it?! Men are pathetic. Sorry, I just had to vent.

Love, Kelly

[Adriana Mangus]

Same situation here...My husband comes home after work and takes a nap, I came home after working six hours, rest a little (no nap), then dinner time. He does not like to eat out a lot, but we have been going out to dinner a lot, because I have no energy and my body aches; in addition to chemo (xeloda) I suffer from fibromyalgia. He wants everything to look "normal" and appear like nothing is going on.. But it does not change the fact that yes , am on chemo, I have mets bc, and my pain is real. Kate, you did the right thing by sharing your feelings with us; anytime you feel misunderstood by the men in your house, just write a line, we'll help you anytime. Note: I do like Stephanie's idea about the GPS. I think I will buy one for both, my husband and I this Valentine's Day. Also housekeeping help is great, do not negotiate! Stay strong.

[Donna]

Hello all,

There was a time when I thought the worst thing I would have to deal with in life was the disorganization that my ADD caused. hahahahaha! So, I didn't have those "stay on task, organization" skills to begin with - and now it's not much different. It has actually given me relief because my two guys, husband and son, expect chemobrain and point out to me all the time that I have a reason to be so forgetful and disorganized after all I have been through. Frankly, nothing has changed with my habits, just their idea of why it happens has changed and now suddenly it's expected and okay

I have hired a professional organizer, she comes twice a week and we now have a home that can be visited. The first week of my diagnosis I panicked that people wanted to visit me and I hired her and it's the most wonderful thing!

Pamper yourself, don't listen to the guys - get a housekeeper, an organizer or whatever it takes to get yourself comfortable. There is no way for them to understand what you are going through without experiencing it themselves so you just have to look to yourself for the understanding - treat yourself as if you were your own best friend and do what you would advise a close friend.

Have a great day!

Donna

[Sandy H]

As always Steph, you are right on top of things! I think my husband has a GPS and its home. I will ask him if he does and suggest he start using it. Now, he has a cell phone and most of the time its on the counter, or in the truck and so we are hunting for each other in the stores!! I did not mention he also has chemo brain and its from anti depressants and not chemo drugs but the same thing. He admits to that so he should understand my frustration right?? That is why one of us is from venius and the other from mars. Now, don't ask me which one is which. Life can be complicated. hugs, Sandy

[Bev]

Hey Kat, I'm too lazy to look it up, but there was a study that showed brain damage from chemo. The good news was the damage healed up after 3 years. There's hope. BB

[Soccermom]

DITTO,DITTO,DITTO! Take my advice I'm not using it...in fact I can no longer remember what it was!
I actually accused my family of "Gaslighting " me...remember the old movie where the husband tries to make the wife think she is crazy??
I get hollered at ALOT and it ST*NKS! I get so stressed out I get sick to my stomache.THEY just don't get it...but WE do!

Thanks for the chance to vent!
Marcia in Mississippi

[Catherine]

Kelly, Chemopause is the best new word I have heard. Hats off to everyone for venting and venting with a little humor. I also, like don't negotiate. I too have a housecleaner. While I was going thru chemo she came once a week. Now I am back to twice a month. In general I have it very good. But when I can tell my husband is uptight and wants me to be normal, I try to disappear into a back bedroom or to the computer room and the Her2 site. Especially in the evening. Then I find him asleep on the couch and I have the house to myself. I keep reminding myself of all the support he has given me. People I used to work with keep saying "now that you are done with treatment....I guess your life is back to normal." Yeah right.

I always wonder who raises some of these insensitive men. I wonder what a chat room for men with prostate cancer reads like. Maybe I will try and invade one.

Keep the faith and keep the humor and keep up the fight,
Catherine in Oregon