f*** your problems my mother's dying

healydt

    Today at  my mothers doctor appoinment we discussed her very limited options for treating her small cell lung cancer. Right now she's on Topotecan but its starting to be less effective. She's been on this chemo for almost a year and there arent anymore options. The doctor is giving her the option to continue the chemo or take a break. My mother is choosing to continue but I'm terrified. This is her 3rd year of battling stage 4 small cell and her body is starting to fail. This last bout of chemo her white count dropped tp 1,000, her hgb was 5, her diarhea and constipatition is out of control, and she's not eating enough. Add to that she's in constant pain.

My mother is only 50. This is not fair. I'm 2nd yr nursing student and I'm sruggling. At 21 I should be worried about school, boyfriends, and friends. Instead I'm trying to juggle nursing school, work 2 jobs and care for my mother.  I know I should be greatful that my mother is stil alive when she was not suppose to make my highschool graduation but Im just done. I go to school and people are complaining about teachers, the weather, the food, and I'm over here like "my mother is litterally dying".  

My question for other caregivers :How do you tolerate around other people who do not understand where you are coming from? I find it hard being around other people who are complaing about trivial things and it's emotionaly exhausting to pretend like nothing is going on in my life and my mother is not dying.  What do you say to people who ask how your loved one is doing?  As a waitress in a small town where everyone knows my mother former teacher , bartender, "townie"; I get that question 15 times a day. What  about me? Not one person has asked how my sister or I are doing. I know that sounds selfish but for once in 3 yrs I want to be selfish. Any input would be greatly appreciated!

david54

 
Dear healydt
 
Thanks for

 

Dear healydt

 

Thanks for you honesty-cancer really stinks.

 

You are so very young to be going through this at age 21. And in nursing school too? Wow! You are an amazing person to hold so many things on your plate at this stage of your life.

 

I am an RN and what used to just annoy me more than anything was coming home and hearing complaints about the lawn not mowed when a few hours before I was with a dying patient and their families, I mean what the hell?!

 

I lost my first wife of 32 years to cancer 6 years ago and now my current wife has also been diagnosed with terminal cancer-trust me, I hear your anger!

 

People who have not gone through what you are experiencing just don't get it. They can't begin to understand the pain, they want to help, but the only thing coming out of their mouths are general questions because they don't know what else to say-that's my opinion anyway. It doesn't make them “Bad” it just makes them how shall I say, ineffective to give comfort. Your reality is light years away from your peers, they can't understand because they aren't going through your experience.

There should be a support group on campus or somewhere in your community. Ask your school counselor of nursing instructor for information. I strongly encourage you to seek help from a support group other than your peers, as I said, your situation is, as you stated, much more raw than complaining about the weather, teachers, bland food. It likely leaves you feeling like you could just scream, I have experienced that!

 

And an addendum to my comment at the beginning of my ramble, you don't have to hold too many things on your plate, let some of it spill off, it's okay to do that.

 

cheatinlil

david54 said:

 
Dear healydt
 
Thanks for

 

Dear healydt

 

Thanks for you honesty-cancer really stinks.

 

You are so very young to be going through this at age 21. And in nursing school too? Wow! You are an amazing person to hold so many things on your plate at this stage of your life.

 

I am an RN and what used to just annoy me more than anything was coming home and hearing complaints about the lawn not mowed when a few hours before I was with a dying patient and their families, I mean what the hell?!

 

I lost my first wife of 32 years to cancer 6 years ago and now my current wife has also been diagnosed with terminal cancer-trust me, I hear your anger!

 

People who have not gone through what you are experiencing just don't get it. They can't begin to understand the pain, they want to help, but the only thing coming out of their mouths are general questions because they don't know what else to say-that's my opinion anyway. It doesn't make them “Bad” it just makes them how shall I say, ineffective to give comfort. Your reality is light years away from your peers, they can't understand because they aren't going through your experience.

There should be a support group on campus or somewhere in your community. Ask your school counselor of nursing instructor for information. I strongly encourage you to seek help from a support group other than your peers, as I said, your situation is, as you stated, much more raw than complaining about the weather, teachers, bland food. It likely leaves you feeling like you could just scream, I have experienced that!

 

And an addendum to my comment at the beginning of my ramble, you don't have to hold too many things on your plate, let some of it spill off, it's okay to do that.

 

I'm sorry healydt.  You are

I'm sorry healydt.  You are doing an amazing job.  I'm sending HUGS to you

MrsMLT

I'm new to this whole new

I'm new to this whole new thing but I have had that exact same thought. 

My husband was recently diagnosised and my world has stopped.  I know that others life goes on but geez - come on!  And - others don't realize that its not just the one diagnoised that gets affected! 

Totally understand where you are coming from!  I wish I had a better answer but know we are here to support each other!

j24

Please read

I'm so sorry you're going through this. Please read an anon. article I wrote - http://thoughtcatalog.com/anonymous/2015/08/8-things-not-to-say-to-someone-whose-mom-has-cancer/

I have a feeling you will relate to this!!!

Spencer58

Caregivers

Being a caregiver is very difficult , my wife has stage 4 Glioblastoma and within 6 months of diagnosis , she is completely diasbled and needs full time care . I am going through the same things , people don't understand , they just need to treat you as they would anytime , How are you doing , good morning, If you have other family , ask for assisitance , you need a break and some time off for yourself, you are trying to live two peoples lives . If you aren't relaxed and healthy , then you will be no help to your mother if you get sick. I would also seek out others , your church or a social worker that can help you get these things off your mind. There should be some groups in your community for caregivers to get together and share . JD

jorola

Spencer58 said:

Caregivers

Being a caregiver is very difficult , my wife has stage 4 Glioblastoma and within 6 months of diagnosis , she is completely diasbled and needs full time care . I am going through the same things , people don't understand , they just need to treat you as they would anytime , How are you doing , good morning, If you have other family , ask for assisitance , you need a break and some time off for yourself, you are trying to live two peoples lives . If you aren't relaxed and healthy , then you will be no help to your mother if you get sick. I would also seek out others , your church or a social worker that can help you get these things off your mind. There should be some groups in your community for caregivers to get together and share . JD

Spencer58 took the words outta my mouth

As a caregiver myself who ran themselves into the ground I speak from experience. If you don't take care of yourself you are no good to anyone including the one you care for and yourself. Please, please find some help. Whatever kind it is, every little bit helps. It will also help you deal with the people you face everyday that just don't get what you are going through. Being angry is only hurting you and those around you. I get why you are mad. I really do but this is no way to live. Please trust me on this.

 

iiformommy

Hang tight

Healydt - first things first - breathe.

To answer your first question: Tune them, and everything they say, out of your head. The only people who will even partially understand what's going on with you/your mom will be other caregivers, and even then, we will only understand to a certain degree because everyone is fighting a different battle. Yes, it's harder to tune those things out because you're in college and surrounded by triviality ("Are you going to so-and-so's house party? Josh might be there and I don't know if I should go after what happened last night." "Omg, it's hell week for our performance and no one is ready. No one is taking this SERIOUSLY.") but difficult as it may be, it is on YOU to tune that noise out and focus on what you need to focus on. And yes, it is emotionally draining. There is no way around that, but you can find relief in a variety of ways - exercise, prayer (if you're religious), whatever activity it is that helps you feel better and provides self-care will help you emotionally deal with this difficult time.

For your second question: Tell them whatever you want to tell them. "She's hanging in there." "There have been some complications, but she's a fighter." Say whatever cliche thing you want to get them off your back. If they really needed/deserved to know how she was doing, they would already be in the know. Also, it's 100% okay to feel selfish. Again, unless someone is a caregiver (or an empathetic human being, which there are a handful sprinkled out there), they will not think to ask how YOU are because in their mind, the cancer patient is the only one struggling. They have no idea what kind of responsibility and stress come with being a caregiver, and unless you explicitly tell them how difficult it is and that you're having a hard time too, they will never think to ask you. I know it would be nice for someone to ask how you're doing, but the reality of it is people only see what they want to see, and if they are focused on your mom instead of you, they may never know how much pain you're feeling unless you tell them. 

I am 25 years old, and my mother is 57. This is her 2nd bout of cancer (she beat the first bout when I was 18, but this recent one we are battling is stage 4 and much more challenging). While I'm not quite in the same place you are in life, I do know the feeling of "it's not fair." And (this will be a bit harsh) if there is anything I have learned from caregiving and fighting cancer and all its ****, **** accompanying problems/side effects, it is NEVER to think "why me?" Because honestly... why NOT you? What makes you so special that you shouldn't have cancer yourself, instead of your mom? Nothing. Absolutely nothing. I had just shifted careers when I found out my mom was sick, so I had upended my life and moved cross country to a completely unknown, foreign place to care for her. And while I have had my fair share of pity parties, I know it is more important to value the time you are spending with your mom right now while you are caring for her, instead of thinking "why me? why can't I just focus on school and having my college experience?" Because you know what? This could have happened at any time. She could have gotten cancer when you were 13 years old and about to become freshman and should just have been focusing on being a high schooler. Have your occasional pity party, but move on. Otherwise this will only continue to get harder and harder.

That said, you are amazing for being her caregiver. You need to remind yourself that. Stay strong, stay positive, and I will certainly keep you in my thoughts.

Elsieblue

Take care of yourself

Healydt, I am so sorry about your mother and what you are going through and at such a young age. I agree with what everyone here is saying. Your anger is so totally justified. It's hard to find people who understand unless they have been through something similar.  And, people can be insensitive and ignorant without even intending to. My husband has been fighting cancer on and off for 7 years, and even when he is doing poorly some of my friends complain and vent to me about their frustrations with their husbands. Typical husband/wife annoyance stuff that seems so trivial to me. I feel like saying, "Do you have any idea how much I would LOVE to have those problems? And what I would give for many, many more years of typical spousal annoyances because that means my husbsand would be surviving long enough for that to happen?"  

I also agree with giving very superficial summaries unless you sense the person can handle the real deal. I think a lot of times, people ask because they care but then they can't actually deal with the real news once they hear it. They get uncomforable and don't know what to say. That's when you get the "silver lining" comments, because they feel awkard and just want out. But, I will also say I am trying giving more honest answers to certain people to see what happens and some people really are able to be more supportive and tuned in. So what I want to say is that you also have the right to just tell the truth if you feel like it, and maybe some people will have supportive responses once they know what's going on for you. If they ask only how your mom is, you have the right to say "She is having a rough time and so I am I. I am really overwhelemd with . . . "   And then if they can't deal with it, that is their problem not yours. 

Be good to yourself, Healydt. Sending good wishes and prayers your way. 

nk1021rn

So Sorry

I am so sorry to see what you are going through.  I completely understand, I lost my mom in February. She too was young, I have a 2 year old and a husband and had to juggle that with work.  It is extremely hard and exhausting. Unfortunately, when your mom is so extremely sick, your foundation is shook to its very core.  Suddenly everyday things are put into perspective and you do realize just how trivial they are. It would drive me crazy when people would complain, for the most part I didn't say anything, but I would be lying if I didn't tell you that sometimes I just broke down, and may have yelled or cursed at people complaining about trivial things.

For people to not "get" where you are coming from, fortunately for them, they have never experienced anything so significant in their life.  Even now, that my mom is gone, it all still seems so trivial. I do tell people, be thankful that is all you have to complain about. I'm not saying it's right, but honestly, that is how I feel. I wish poor weather or something else trivial was what ruins my day. But it's not, it's much deeper as you know.

When people would ask how she was doing, my only response was as expected. Or I would ask them to keep her in their prayers. I mean really, what do they expect you to say when your loved one is suffering from cancer??? Whether it is end stage or they are in treatment, the whole thing is horrific. There is nothing good to say. 

I am so sorry you have to go through this.  Everything your feeling is completely normal, I know it doesn't help, but it is. 

BB6416

Similar situation for me

My mom was diagnosed with what the docs think is stage II to III small cell lung cancer this past week. She is 57 so also fairly young like your mom. I'm 28 and it's especially tough because I'm getting married in 5 weeks. Talk about timing!! I'm grateful she'll be here, but so sad she'll be likely feeling pretty sick by then.

I'm also struggling with people not understanding what it's like. My future mother in law told me last night not to carry her burden for her, but its really tough! I know this is the LAST thing she'd ever want for our family right around what was supposed to be the happiest time in my life.

As for what to say, I'd just say something like, she has a great support system and all we can do is stay hopeful. I'm still trying to figure out what to say or even how to tell people- because they notice something is wrong with me and its hard not to talk about.

 

NinaCarina

Hello I literally just

Hello I literally just registered. Have I known 8 years ago that I had an outlet through here I would of been on here. Tonight I had to tell my family that my mothers genetic test result came back positive for Lynch syndrome-High risk for cancer. Although based on her history and family history it was sort obvious but this confirms alllll. It's been a rough day and when I felt overwhelmed, fed up, I just don't care to hear about cancer anymore. So I decide to give this website a visit, irony But I'm glad I did.  Your post was the first  that caught my eye as I began to read, I began to cry because I understand you so well,  because 8 years ago when I was turning 19 years old, fresh out of high school and a freshman in college my mother was diagnosed with small bowel mestastisis, stage 4. LORD!!!!! What was I supposed to Efin do!! I am not the only child but I am the one who was living with my mother at the time and took care of everything. My life literally took a turn for the worse. i wanted to enjoy my life I was frikken 19 just learning to live... And here I was working two jobs and going to school and then my mother? Yea that drove me to do a lot of things that I am not so proud of today, but I simply didnt know where to turn. I began to drop classes, grades, until my grants were taken away due to my low gpa, and I found myself in a deeper hole and most off all I realized that nothing else will make my mother happier than to see me walk down the isle with my cap and gown. School is very very very important for my parents, I did what I had to do and I got back on my grind. I dealt with the cancer, fought that B****** along side with my mother. Yea my friends didn't understand, and even until this day 8 years later I am angry at the things I hear my peers/friends complain because like YOU my thoughts are the same "really? ... My mom is Effin dying .." Or my responsibilities seem outrageous compared to my friends, lifestyles .. EVERYTHING is different when your a caregiver at a very young age And that follows you through time. I didn't want to feel like I had no choice but to deal with the ignorance of people and I decided to make cuts of who I want around me as friends, I always spoke to my closest friend of the importance of my mothers health And made sure they heard me loud and clear. I didn't care if they understood, they werent and aren't going through my situation, so my expectations had to change. I simply wanted a shoulder to cry on and someone to listen and hug me.. Iv been where I felt like "HELLO IS ANYONE GOING TO ASK ME, HOW IM DOIN ?"  I simply stopped caring, when someone asked about my mother ? Forget about it, that question used to just bring tears to my eyes and I never wanted to answer and got very defensive. Today, when ppl ask me about my mother I simply say "she's doing ok thank u for asking" because as blunt as this may sounds it's the truth, no one realllllyyyyy cares that much, unless is the ppl who love and are a part of your everyday struggle. I turned to God, no I did not turn into a church person-- no offense, but spirituality I was dead and I needed something to bring me back to life. Through God I found so much more than what I was looking for. Yes life is still very difficult my mother has had at least 4 different cancer Mutations and different kind of cancers, has gone through chemo, radiation and is now developing dementia due to the radiation to her brain, but GOD has allowed my siblings and my self to enjoy these miraculous 8 years with my mother. I am an emotional wreck, but you have TO BE STRONG!!! That's what I tell myself all the time, we are chosen to walk this path with our loved one for a reason and I plan to ride this plan out until the end. sorry if my reply is too long but I understand your frustration with life at the age your in. But only time itself wilol help that matter. My friends will never understand and that is just another reality of life. I hope this serves as some help for you. Know your not alone and know that you are amazing and your doing the right thing. Keep fighting through that is what life is all about. good luck. -Nina

cheatinlil

I love your whole post Nina

I love your whole post Nina but especially I feel this way too:  we are chosen to walk this path with our loved one for a reason and I plan to ride this plan out until the end.

You are doing great!  Hang in there.  I'm glad you found a place here to vent it out to people who understand and get it.  You are a beautiful person

jamiedee1999

Healydt,

Healydt,

You came to the right place! Right now, the people around you don't understand what you're going through, and it sucks, but it doesn't make them bad people (for the most part). This chat and, if possible, an in-person support group for family and caregivers will be imperative. You could have THE most supportive people in your life, but in the end, you really want the perspective of people who've walked or are walking in your shoes. Make sure that your mom is getting that too. Get yourself a mantra, a self-care routine (get your nails done, grab a drink with friends etc.) and a support group. You WILL get through this! Take care

KnittingTree

I understand your anger and

I understand your anger and frustration all too well. Last October my mother, age 57, was diagnosed with stage 3b uterine sarcoma. It was terrifying. But then she underwent a hysterectomy with clean margins and had six months of chemo. She was so amazing, chemo for one week and then back to work for the next three, even driving herself the 45 minutes to work. Everything was looking amazing, no signs of cancer on the MRI or blood tests. That is until this past October when we found out it not only metastasized to her spine and shoulder but was causing fractures in her spine. She went from walking every day with my dad to not being able to get out of a chair. Again hope reared it head with surgery, only to be shut down a few very short months later. In April we were told by her doctors that we were out of options, the cancer was too aggressive and spread too far. Only a few weeks later did she pass. As a caregiver for her along with my younger sister and father, and lthe last month my aunt (her sister), I found it so difficult to concentrate on anything. I am 25 and had moved back home to get my Masters degree in ecology, all I had left is my thesis. Not a single page was written during those months. A fellow student would look at me incredulously and ask "you haven't written any of it?". People just cannot possible fathom how much this takes over your life, the worry, anger, guilt for wanting to do something for yourself and the fear that you're running out of options and time. This past week I was telling a silly story about my parents from a few months ago, they forgot to water a plant and it died. It was silly because they were always terrible about watering the plants so it was a bit of a joke with us. Yet one of the people I was speaking with said 'I'm sure they had other things on their mind '. That phrase bothers me so much. Yes we all had other things on our mind but please do not talk to me as if I wasn't there, as if I don't know what it was like. I realize it was just a comment and meant no harm and am beginning to realize how uncomfortable people are. The looks I get or the general comments or worse, the silence when I mention my mom. I mean it has only been three weeks but I cannot seem to talk about unless with family as everyone gets very uncomfortable. I guess people do not understand that it is okay to remember, and that while we may take things a little easier for a bit, we still.make everyday life decisions. 

I am sorry this is a little long, and if there are any grammatical errors, I'm typing from my phone. I just wanted to add my own experience with frustrations of people outside this unfortunate world of cancer, though to no fault of their own. I also really needed to let out these frustrations, I have since moved back out of state away from my family and while my boyfriend tries very hard to be there for me, there are things he cannot understand nor was he that close with my mom, they just did not get to spend enough time together.