• I know this is a dumb question

    Asked by Skyemberr on Monday, March 19, 2018

    I know this is a dumb question

    Have any of the rest of you felt isolated ance angry at your family because you feel like life is flipping by quickly but the family won't talk about your illness?

    I know three answer is yes. I had a hard weekend. I'm very tired but having a lot of trouble sleeping, much less sleeping normal hours.

    So I know in was a bit overwrought this weekend. I got very upset though at my husband when he came home on Saturday after taking my car in and told me we'll have to get rid of it due to a possible mechanical issue. He said he'd by me a car on two years but I'm not sure I'll be here in two years. Ago that was sort of strike one. I feel like I'll never have a car of my own again. Rationally I know we can get another car at some point but this car is one I worked for and is mine. I'm really not sure I will make it to the next car.

    Then the next thing... Right after telling me this I curled up for a couple of minutes to try to work through the shock. My husband came upstairs and.....

    25 Answers from the Community

    25 answers
    • biga17133's Avatar
      biga17133

      came upstairs and what??? your leaving me hangin...LOL

      9 months ago
    • Skyemberr's Avatar
      Skyemberr

      ... He saw I was still exhausted and not ready to go. So husband took my girls too see a wrinkle in time without me. This was a trip that was my idea because I need time with my family. After they left the house They decided to go to a later show and didn't bother to call me to let me know. I ended up alone at home, upset and sick to my stomach until 11pm when I was finally able to go downstairs because the person with flu had gone to bed and I made myself a crummy omelette. At about this time my husband and kids came home and I got to wish them goodnight. I didn't complain.

      Then today we did have a nice morning together because I'd been up all night again and couldn't sleep. I actually had breakfast, was on computer for 2 hours and then tried to go to sleep. My husband went to the store and didn't buy any food for making dinners. He came home and instead ordered pizza which he knows I cannot eat. I was stuck eating yogurt for 2 meals today because I didn't have anything to cook and didn't feel well enough and he didn't buy anything to cook.
      I finally lost my temper with him when he told me that I'm not that sick and that I was making him the bad guy. I had him leave so I could cool off.

      I feel invisible. I've been wearing the same nightgown for days and nobody cares. Food can be cooking in the kitchen and it isn't offered to me sometimes at all sometimes for a few d a us on a row.

      I only get to leave the house to go to the doctor..

      Have any of you felt this way or had this happen to you, especially after a metastatic diagnosis that is aggressive?

      I had to ask and had to get it off of my chest. I'd talk to a therapist here if there was one near me who understood cancer. I feel like a real b#tch for getting upset about it, like I ruined my families weekend even though they ruined mine.

      I feel like my little 7 year old doesn't feel like she has anything in common with me anymore. All she knows is that mom is in bed and ditched her on St Patrick's day movie night.

      9 months ago
    • biga17133's Avatar
      biga17133

      WOW OK lets see if i can help break this down,,First I'm so sorry you feel this way but i can understand as i have been there also the last time my wife cooked was 7 months ago,,LOL
      But feeling like they don't care is wrong i would bet, Ask yourself would you have been as upset if they didn't call about later show if you were not sick?,,,maybe maybe not ,,now the part of ordering pizza was more for the kids i'll bet and easy but it was wrong not to include your thought on this to see if something else could have been added to order that you could of enjoyed ..

      i would suggest you sit down with your husband when the kids are gone and tempers are not high and try to talk to him as you have here try to remember this is the man you love and said i DO" to many years ago and had children with being sick is had on EVERY ONE even the ones who have to watch i know he is having a hard time with this also maybe not physical but mentally think about it he is watching his love go thru this pain and can't do a dang thing about it and as a man that hurt's ,his whole life is falling apart in front of his eyes and he can"t do anything about it he is use to you being there as a team taking care of the house and kids and now his role has change and he might not being do a great job because he is use to you being the Rock and now he needs to be and he not because he to could be having a hard time DEALING also in his heart there is pain also maybe he's not doing a great job but it doe's not mean he don't want to, his depression is so strong right now it might be stopping him for doing saying and being there 100% of time,,try and think of what's going on with them as well as your feeling's i know it's hard and you want them to be there for you 100% and you may feel hey I'm the one sick and that is true and I'm sorry for that but try to think its hard on them also they have to deal as well and some deal by not dealing they think if i don't see it it wont be true,, go take a bath change your grown and talk to your Family and remember why you choose your man and to build a Family with him. and seek help with a professional doctor to talk this out with he could help and Pray Pray god can HELP life is short don't waste it on not trying to fix it praying for you and your Family and smile and laugh more it will do you good they love you and need you and your husband needs his rock! still taking a bath by myself as you to can biga17133

      9 months ago
    • geekling's Avatar
      geekling

      Hmm.
      I havent seen a Wrinkle in Time but I have been told you did not miss anything except the time with your family.

      I dont understand how a possible mechanical issue would force anyone to abandon a vehicle. Dont people usually trade them in or simply fix or replace the part?

      I remember being so sick but my treatment was likely different than yours. I did not skip meals.

      Your family did not ruin your weekend. There ought to be a can or a box or a fresh bit of something you can grab.

      I dont exactly understand how you can eat yogurt but you cant eat pizza but most pizza parlors have a few other offerings.

      So the truth is that I think there are bigger things bothering you than a crappy weekend.

      Did you let your daughter tell you all about the movie your illness made you miss? Did you tell her how much you missed being with her? I hear that Oprah is made up kinda creepily. The movie is based on a wonderful book that, perhaps, your might read with her.

      I dont know what is or isnt going on between you and your husband but, sadly, you need to take some responsibility for yourself. There is no reason but for self consciousness that you dont leave the house but to see the doctor. Everything else is none of my business. Perhaps a counselor?

      Wherever you live there must be a park and/or a place to relax and people watch. What did you like to do prior to becoming sick?

      If you arent sleeping, your days will suffer. Try simple things like lavender/chamomile tea. If your liver is good, knock yourself out with a cup of valerian tea (use a lot of sweetener) or ask the doctor for some little pill or other.

      Please dont abandon hope. I hope you feel better soon.

      9 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Sounds like you've had quite a time lately. And it all hits at once, doesn't it? I'm so sorry you are feeling neglected. That whole thing w/food is just sad. How hard is it to pick up something you can eat when he's at the store. Does he know what you can have? I hope this is just some communications snafus that can be resolved when the two of you can sit down and talk. I hope things get better for you soon. And you know we'll always listen to venting and hold your virtual hand whenever you need us to. ((Hugs!))

      9 months ago
    • lisahal's Avatar
      lisahal

      You can do puzzles with your daughter. My granddaughter loves to paint. You can order online paints and canvas. You can clothes shop online with her. You can have a stylist come to your house to get your hair done. Plan a summer garden. Cooking classes.You can take control. You can give your husband a list of food you need for the week. Remember, women are from Venus and men are from Mars. Most of the time my husband does not get it either. He might be drained, scared and just doing the best he can. Hope you are happy today!

      9 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      So agree with Iisahal about “ women are from Venus and men are from Mars” comment. We women are emotional creatures and show it , while men often hide what they are feeling. This is a tough time for you both. Your husband is offering a practical solution to your car problem,and to you, it means another loss of the familiar and the life you had before your diagnosis.You admitted to feeling very tired and not ready to go to the show plus you were upset, not the best scenario to have a night out with the family. Your husband, not wanting to disappoint your children took them to the movie , possibly trying to give you a chance to ease your emotions and disappointment but also to give you a chance get the rest you badly need. You both need to communicate honestly and openly with your hubby about your feelings, also be willing to listen to his feelings as well. Miscommunication is a bummer and can cause hard feelings , resentment, and fear. Also I can recommend reading the book Women are from Venus and Men are from Mars . It is a page turner and an eye opener.

      9 months ago
    • BoiseB's Avatar
      BoiseB

      I admit that I cannot say I fully understand, I can only contrast it with my own experience. My two adult children both were very protective of me. I can only say that your story makes me so thankful for my two children and a little bit guilty.
      Can you have your Dr. talk to your husband about. Not having anything to eat is neglect. If your husband cannot step up to his marital responsibilities, you know that in sickness and health bit, there needs to be somone who can. I hope your Dr. can advocate for you. If your husband refuses to go to your Dr.'s appointments with you perhaps could write a note explaining your needs. Also it is horrible that he is making you feel responsible for his bad behavior. Does your husband have a best friend who could talk to him? Your husband needs to face his emotions. And he needs someone who could help him. I am praying that your Dr. can help.

      9 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @Skyemberr, i am so sorry you are going through so much. It felt overwhelming to me just reading how the weekend went.

      Before I forget, there are no dumb questions and this post definitely had nothing i would have considered dumb at all. My heart just ached for you.

      I could so feel the hurt you have over losing your car. Our son's car died this weekend and it may cost more to fix it than it is worth. While we try to figure out next steps, i had to clean out the car I call my dog car and take it to him. It was painful, but necessary, to leave it behind with him.

      I won't typically be stuck at home because we do have another vehicle. Would you be able to take hubby to work so that you are not stranded at home every day?

      I wonder if you could make up a shopping list for your husband to use when he goes to the store? You have to be able to eat ... and you need more than yogurt. Lots of stores have delivery services now, too. If your husband doesn't want to shop for you, maybe you can take advantage of a delivery service.

      If you are able to eat some nutritious food you are likely to feel better. Hunger can bring on depression.

      I totally get how hard it is to watch life go on ... without you feeling a part of it. I agree that your husband's motives may have been totally for you in taking the kids to the movie without you. But, being hurt and upset and furious AT CANCER for denying you the capability of being part of it all is so understandable.

      You got lots of ideas for things to do with your kids. I hope you can do some fun things with them. You will feel better if you can I bet.

      biga17133 had some very wise advice when he told you to get cleaned up. You will feel a ton better after washing away grime and putting on some clean clothes.

      We are always here for you and are more than happy to listen ... and, of course, offer our thoughts and suggestions.

      I hope you feel way better ... and that you can get a bit of sleep. That, too, will brighten your spirits.

      9 months ago
    • Ejourneys' Avatar
      Ejourneys (Best Answer!)

      First, (((Hugs)))
      Anyone who tells you to get dressed/wash up/go out, you're-not-that-sick, etc., needs to read this:
      https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

      I first learned of the Spoon Theory at my partner's MS support group. Only you know whether you truly have the resources (spoons) to do something. Although they can be related, inactivity due to depression and inactivity due to sheer lack of physical resources are different. Only you can honestly assess your own experience.

      I like @LiveWithCancer's suggestion of writing a shopping list for your husband, if he is the type who will read it. On that and on supportiveness in general (or the lack thereof), he may need to have everything spelled out for him in writing -- again, if he is the type who will read notes. I like @BoiseB's suggestion of explaining your needs in writing. Letters are less in-your-face and can be digested at the speed of the reader.

      I like @geekling's suggestion of talking with your daughter about the movie, and @lisahal's suggestion of things you can do at home that can involve the family. What are your interaction needs? What are theirs? Where can you find common ground? What's the best way to balance that interaction with any alone-time you need to process what you are facing with mets?

      Immerman Angels provides one-on-one cancer support and matches you to a mentor:
      https://imermanangels.org/

      There are also help lines at ACS (https://www.cancer.org/):
      800
      227
      2345
      and at Cancer Support Community (https://www.cancersupportcommunity.org/):
      888
      793
      9355
      which also has a live web chat Mon–Fri 9am – 9pm ET.
      (I've broken up the phone numbers so they won't be redacted.)

      There are no dumb questions. The world is dumping on you and I know you are looking for the best way to navigate through all the c.r.a.p.

      9 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I love the spoon theory. I am glad to be reminded of it :)

      9 months ago
    • GregP_WN's Avatar
      GregP_WN

      I agree that there are NO dumb questions! Please, everyone, post what you want to with no reservations. That is the purpose of this site, to get the support, answers, and inspiration that you might need at the moment.

      As for your problems with family, I think we have all had some issues with the family, in one way or another. Some are serious, and others just tick us off. I won't offer any advice on that, the others have done a great job already. I will, wish you the very best, and ask you to be proud of yourself, and remember that you are a fighter, a survivor, and have been through things that some others could only think about. You are a winner and deserve the very best that life can give you, from now on. Get your share of it!

      9 months ago
    • Carool's Avatar
      Carool

      Skyemberr, I have nothing to add but that as geekling said, that movie isn't very good. I'm sending you a box of Brooklyn hugs.

      Btw, I happen to not believe that "women are from Venus, men from Mars." We're all from Neptune.

      9 months ago
    • Skyemberr's Avatar
      Skyemberr

      Thank you for all of the kind comments. Some of you don't understand where I'm coming from and that's ok. Some of you know exactly where I'm coming from. Let this be an educational post for me and for other people who don't understand what it is like to be very sick and stranded.

      My husband knows I absolutely can't handle pizza and haven't been able to eat it for over 2 years. If he orders that I have to find a way to cook a meal. He says he will go buy me something but he gets angry If I send him out. I've done food delivery a few times but it's very expensive.
      If I'm so exhausted I'm having trouble being out of bed ( 6 tumors in my lung) I'm stuck with items I can eat on the run and not cook, and be able to digest. (remember I have rectal cancer and have had MAJOR stuff done to my digestive tract) That means yogurt, pb&j or microwave Mac and cheese are my options. We had no soup. Our canned goods are mostly beans which I can only eat in tiny quantity, and we had milk and eggs. So my options are pretty limited for cooking for myself usually. Sometimes we have more in the house but not this weekend.

      When I make a list and have groceries delivered my mother in law has a fit because of some reason I can't fathom. I think its a control thing. She gets angry about making room in the cabinets for whatever I ordered. She's helped me tremendously, but in this she's not helpful.

      The family tries to make stuff I can eat, but usually at least 2-3 nights a week I cannot eat whatever it is that is made so I eat yogurt. I also eat yogurt for at least one other meal a day every day. It is frustrating even though it is very good yogurt.

      Unfortunately, I also having trouble planning meals and the family expects me to tell them what we are having for dinner even though I'm not cooking or may be too nauseous to pick something. Its very hard on them and on me. They will wake me up out of a sound sleep and ask me what is for dinner that day and I have no idea.

      I have tried making shopping lists but if I put the ingredients in there they expect me to cook the meal, which I'm often too tired to do. So meals are an issue in general. I'm trying to fix it but oftentimes I either don't get one or things don't work out. Now to top it off I'm having a lot of stomach pain. I'm not sure if I'm getting an ulcer or what.

      Someone also commented that of course I could get out of the house. I want that person to understand that I cannot drive due to medication. I'm too sick to walk far. Around the block is my limit and then I'm in bed the next day. If my husband isn't here I can't go anywhere. If he is coming home from work he usually will not take me anywhere that night unless it's an emergency. Its not because he's a jerk. Its because he is either too exhausted from work or he has a prior commitment.

      The other person who can drive, my MIL, never invites me anywhere and does all of her errands at 9 am when if I do manage to get to sleep, I am out cold. I've tried getting her to go at 11 am to go shop and she won't do it. Other than taking an uber, which I can't afford, I cannot get out of here.

      This weekend was really important to me because I wanted a meal that tasted good that I could eat, and I wanted time OUT with my kids and husband. I don't care about wrinkle in time. I want to be able to DO something with my kids other than lay in bed and talk to them. We have wonderful conversations but we need more than that. When I was left here for not being ready on the spot, after getting very bad news, and then they decided to go to a later show and not call to ask me if I could be ready I was very hurt. I didn't get angry though.

      That didn't happen until the next day when the third dinner in a row( the only prepared meal of the day I usually ever get) was going to be something they absolutely knew I couldn't eat. It's intensely frustrating to not be able to have real meals because your family is bored with what you can eat and won't buy the materials for it! I get it that they are sick of eating the same meals and I cut them a ton of slack, but everybody has their limit.

      As to cleaning up, I did. I was just trying to make a point when I told you all about It. It is distressing that not only can I be in pajamas for 4 days, they can be the same and nobody cares. They can be on for 4 days because in a MONTH worth of items on the calendar the only one I am included in is my ct scan.

      I can and I have asked to go to the nursery to get flowers or to the mall to buy my kid pants, but they won't take me. If I get anything it's online... Except for yogurt and some other very basic meal stuff. I haven't left the house since I went to a medical appointment around Valentine's day.

      And the thing is I've told them I want to go places. I desperately want to go to the beach, or the dog park, or the store. The answer is always no because it is a hassle, or my husband is at work, or we are fairly broke and waiting to get paid. The other fun factor is that since my sleep is terrible I'm often not awake until early afternoon, that's another excuse as to why I wasn't allowed or invited to go wherever.

      That part is sort of my fault, but the sleep doctors have told me repeatedly now that my hypothalamus has development issues so I'm going to be awake at night unless I drug myself into oblivion. It didn't use to be this bad, but I think the cancer is making me much more tired. Not sleepy tired.... More like it is very hard to move around tired. I take ownership of that sleep issue, but I've been trying to fix it since I was in my 20s and it's only gotten gradually worse. I'm 45 now. I don't see that changing. The best I can do at this point is make sure I'm awake when my kids come home.

      Putting the bar at the lowest level for all of us, I'm satisfied if I can just try to get out once or twice a month in the afternoon or evening. But it is not happening.

      In summary: I'm sorry to whine at you all. I really had to vent about all of this. I don't know what to do. We have a few cool things scheduled for this summer, but that seems to be all I have going for me, food and morale wise.

      I'll flip the coin and say I'm lucky to have a family around me. I'm lucky they help get my 7 year old on the bus in the morning when I cannot. I'm lucky anyone is here to cook anything. I'm lucky my kids love me still. I'm lucky my husband has stuck by me. Overall my family does care. They just really don't understand. They won't even discuss my diagnosis with me.

      I'll look into some of the helpful links provided above. I've actively sought counselors for the family but there isn't a resource here with experience with cancer. I'll keep looking. Hopefully the long talk I had with my husband about some of this yesterday will help. I doubt it though since I've addressed it numerous times.

      Thank you for listening to me rant a bit. I hope someone else out there who is sick and stuck in a similar circumstance now knows they aren't the only one.

      9 months ago
    • geekling's Avatar
      geekling

      My sympathies lie with you to a point.

      I remember the exhaustion. I still didnt skip a meal. You arent helping yourself by not eating or ignoring what it is that you need. Buy a juicer. Some of them are safe enough for kids to use them. Allow your children to feel important in the family dynamic. Leave the clean up and sharp blade to your hubby. You need vitamins, minerals, essential fatty acids, and basic nutritional requirements.

      You might feel a hellavalot better if you gave your body what it needs to function. This is doubly true for you if your digestive mechanisms have been mucked about some. When you use a juicer, the juice is easily absorbed without much need of any digestive process. This was Gerson's theory and he wasnt at all wrong despite, perhaps, not knowing everything people have learned since he was on this plane of existence.

      Cost of a juicer can be about the same as family night at the movies along with drinks and a pizza. The whole family can benefit..

      Part of the reason whatnext works is that well people simply cant imagine a sick like cancer where even treatment can leave a person so debilitated that there is difficulty in bouncing back. Think how you wouldnt wish your current situation on a dog but you are upset that your family arent more deeply understanding. It isnt possible for them to understand nor is it fair for them to always... it is just that cancer is a difficulty and a challenge which is really hard to face. So people who have been there congregate here to support each other. We have, each and all, been beyond the pale. I became well versed in the histories of concentration camp victims with whom I felt an affinity when I was decancerfied. I wouldnt want people I love to deal with it too.

      I dont know how to help you with your family dynamic but you have to start with basics like nutrition to strengthen yourself. Getting better food inside of you will also change around your wake/sleep pattern.

      There are dozens and dozens of herbal blends of tea sold to let folks sleep. Valium was originally e tracted from the Valarian root. As long as it doesnt react with drugs you are already taking, a cup of valerian tea mixed with lemon balm, verbena, and lavender would knock you out for a few hours.

      I have a gf who eats meat and her hubby is a vegetarian. They manage quite nicely and whoever is dealing with the meal that night preps for each and both. Depending on your insurance and on how your doctor writes orders, an aide can be sent to your house to help you to shower and dress, to prepare food for you, and to either shop for you or do a little laundry.

      Imagine the side of your face being gently stroked and this woman asking you to please help yourself.

      Best wishes.

      9 months ago
    • geekling's Avatar
      geekling

      https://www.m.webmd.com/vitamins/ai/ingredientmono-870/valerian

      Forgot the link. Sorries. Good day to ya.

      9 months ago
    • Skyemberr's Avatar
      Skyemberr

      @geekling I hear you. Thanks though for the thoughtful post.
      I'm not sure about the juicer, but I do agree that better nourishment would help me feel less shaky and tired.
      As to my family, if cancer was coming at my family and I got a choice I'd jump in front and take it for the team because there is no way I EVER want any of them to feel the things I've gone through or how I feel now. Over my dead body.

      I do want them to understand or at least be understanding if I get upset for 20 minutes because my husband wants to get rid of my car instead of doing a repair. It's $800. It is doable.

      I do want them to not get annoyed with me if I have trouble eating something. Sometimes they are good about that other times I get no real meals for a few days. Yesterday was good. We had corned beef and cabbage. I was able to eat a little of it. I still had yogurt 2 times yesterday, but it had almonds and walnuts on top. So I did get some nutrition.

      The Valerian tea I've been drinking for a long time.! I don't think I can have it now due to my meds but I will ask my palliative doc the next time I see her.

      Thank you for the sweet suggestions! I hope your day is wonderful!!

      9 months ago
    • Skyemberr's Avatar
      Skyemberr

      @geekling I grew lemon balm and lavender last year in my garden too, so I have a bunch that I dried.

      9 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Ejourneys,your knowledge and resources of informational sites is very welcome. I went and read the Spoon Theory. Agree that anyone with a disability or illnesss will identify with this lady and the spoons. I certainly ran out of those spoons when in chemo. Had never heard of this before your post. Thank you for sharing so I can share with others.

      9 months ago
    • Skyemberr's Avatar
      Skyemberr

      @Lynne-I-Am we are big on the spoon theory in this house! @Ejourneys nailed it when she brought that up.

      I count spoons, and unfortunately my older daughter has a hypermobility syndrome of some kind along with fibromyalgia so she has to count spoons too. She's the only teen I know who goes to bed at 7pm. She's out of spoons.

      That lack of energy brings a new level of dysfunction to me and my daughter that makes the house crazier because less people can help.

      9 months ago
    • SandiA's Avatar
      SandiA

      Hi! I am so sorry you had a horrible weekend! I know I have had moments like that from time to time. So first let me give you a ((hug)). I had a horrible emotional time in the hospital and could not stop crying I tried to reach out to friends and family and to be honest they had a hard time understanding. I logged on here and vented It helped. My husband and I struggled a while back. It seemed like when I was in pain he would say well did you take such and such. Why didn’t you do such and such and finally I just said why are you mad at me. He seemed shocked that was how I was feeling but he was coming across angry at me. We talked it out and he was angry but at the situation. I hope things things get better. I know it can all be so overwhelming. Hang in there. And like others have said there are no dumb questions. We are all here to help each other. Another ((hug))

      9 months ago
    • biga17133's Avatar
      biga17133

      praying god helps your Family and gives you the answers you seek,,, keep venting we all do it here seems the only place were we are not judge hugs to you,,,still taking a bath by myself biga17133

      9 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Skyemberr, just checking in to see if you're feeling any better?

      9 months ago
    • Skyemberr's Avatar
      Skyemberr

      @LiveWithCancer Feeling better. Reading this thread was a good reminder of where I was at that point and how far the family has come since that week!

      Thank you everybody, for sticking with me.

      7 months ago
    • BoiseB's Avatar
      BoiseB

      I am so happy things are getting better for you, Sometimes posting a rant here on WhatsNext is one of the most helpful thing you can do.

      7 months ago

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