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Hi everyone i hope no one cares if i vent. My mom has nsclc we found out on memorial day. My life has been on a rollercoaster ever since. I still live at home with my mom, dad and sister iam 32 years old, I know i am a loser. I try to help with mom as much as possible and fix her meals. Mom has had problems ever since the diagnosis first she coulndt keep anything down they fixed that then she became constipated then they fixed that her legs were swelled they are trying to fix that but i dont understand why she cant walk since her legs have gone down. Is this normal? now she cant eat because it burns her throat because she hase some kind of rash. It hurts me to see her suffer. This morning we took her to the hospital. I was hurt and went outside to cry my father come outside and broke down and said he coundnt do this all by himself. I was hurt that he was hurt but it also made me feel like i hadnt helped any, is it selfish of me to want to get hospice to help I cant lift her to change her depends and i mentioned to my father and he said it was a good idea. I feel week and inadequate as a daughter. I had talked about getting myself an apartment and i think this hurt my father thinking i was going to leave. But i wasnt trying to run away from moms situation. Can someone please give me some advice?

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Hi Lizard,

First of all you are not a loser for living at home with your parents. I bet your presence has done more than you'd ever know.

I hear you on your life being on a rollercoaster after you heard of the diagnosis. My father was diagnosed with NSLC in March of 2005 and I still feel like I'm on a rollercoaster. Sometimes I wonder if it'll ever stop. However, I think it's important to understand/accept that emotions are normal considering the situation.

You didn't mention if your mother is having treatment or what stage your mother is at. Maybe there is something out there treatment wise that could help her. If you doctor said that there are no options, I strongly urge you to look for a second opinion ASAP.

I would definitely ask the doctor about the rash and your mother not being able to walk. Maybe they can give her something that could help.

P.S. This is a wonderful forum that can answer questions, vent on and gain support from people going through the same things you are.

Please keep us posted,

Shirley

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My mom has been through radiation her last treatment is on Monday the 10th. Im not sure of the stage but i know that they give her 6th months to a year. We had a second opinion and they said there was nothing they could do that would be any different for mom. THey are trying to get her rash under control. My moms has two small mets in the brain and a spot on her spine besides the one on her lung. the ones in her head are shrinking.

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YOU AR NOT A LOSER BY ANY MEANS AT ALL

First off we have a lot of members who have proved their Doctors wrong about how long they will live. A dr doesn't know how long someone has to live.

Second Your emotions are normal and so are Dads It is ok to cry if you want to. This is scary for anyone to go through. Caregivers and patients. If you want a little insight read survivors fears in i think Small cell Section I believe. Crying is normal for anyone associated with this disease. Don't be ashamed of it under any means at all.

Nothing wrong with living at home with Family, explain to Dad you need a little room and are still close by and not giving up on the situation at home. Just need a little space. thats all.

If you need to change momand she is bedridden Try tucking under and rolling her sidwe to side gently. Rolling is how hospitals change patients. Learned this from Dad being in a Nursing Home Temporarily for Physical therapy rehab. Also change sheets this way. It works.

What stage is mom and has she had any treatments besides radiation? Is a second opinion possible where you are? I can't believe a Dr would give up so easily it sounds like to me. You need a Dr that will fight witheverything possible. Do youbelieve your Oncologist has done this? This is your moms life here and if a Doctor won't fight for her time to find one that will if it is possible! let us know how you are getting along. You will get many more resposes to your post We will help as much as possible. Sending Prayers for your family and tha things get a little if not a lot better for everyone.

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Hello Lizard.

I am so sorry about your mom. I must agree with Shirley and Randy YOU ARE NOT A LOSER!

It sounds very much like your mother needs a new dr, one who is willing to take a more aggressive approach to her treatments. Have you tried giving mom Boost or Ensure to get some calories into her? It may help a lot with her overall strength if she can manage to drink some of those type of drinks.

As far as crying etc, this is probably one of the biggest emotional rollercoaster rides anyone could ever experience. Cancer effects everyone, the patient, the caregivers, the family and friends. What you have mentioned here sounds pretty normal to me.

Please keep us posted and let us know what you need so we can help.

Keeping you and your family in my thoughts and prayers,

Chris

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calling hospice to help is not a bad thing, it is very hard to care for someone 24/7 and the more help you can get the better for all. you are not a loser either, i lived at home until i was 38 and i have memories that i would never give up. the only reason i moved out was i got married! so hang in there and take each day as it comes.

love and prayers,

gin

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Liz:

First of all, you're not a loser. Heck, I'm 45 and I live at home and have for about 16 years now -- our family has a small farm and we tended to it together. I even worked from home (my paying job). Second, you're normal in what you are experiencing with this.

I personally address the high emotions that come with this journey by becoming very informed -- everything I say I can't do, I find out what I can do to deal with it. My immediate/first solution may not be the greatest at first, but it's a process to support this dx. Ignorance (i.e. not knowing) just is not bliss with this and I swear we have to become like "doctors," "social workers," "home aides," etc. etc. without all the training and paychecks that go with it. It's that knowledge that really helps us calm down and advocate well for our family too in this.

Nothing wrong at all with getting extra help in or seeking community support and training to learn what to do with things like dressing, changing, that works for your family and your mom. Is your family getting copies of medical records and test reports? Has your family been attending doctor visits with mom to know what's going on and asking questions of the doctors? Does your family have access to the doctor anytime with questions such as the leg swelling issue you mention? All these things will really help.

The best way for us to help you better is if you can tell us what your mom's exact diagnosis is (what stage of LC in addition to what kind), what treatments she has received so far, and exactly what problems she has run across with them. The more specific you can be, the better we can help. Was only receiving radiation what the doctors laid out or was it your mom's choice from the treatment options the doctors gave her?

What is your mom saying about all of this -- what are her wishes? As I understand it, hospice help is initiated by the doctor and means that no further treatment can be pursued (other than comfort measures). Your mom's wishes are very important as well to that kind of help.

Best to you in this journey. Keep us posted and we'll support as best we can.

Hugs,

Linda

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