Family just don't understand

This is my second time posting here. I need to know how to deal with family that think just because my last scan gave me the all clear that my body still isn't better. I hurt and stay so tired but everyone thinks I should be up and doing everything i did before. I know I have to move and i do but i just can't do as much as I use to not even close...

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16 Replies

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  • So sorry your going through this. Your body has been through a lot. It will take a lot of time to get your strength & energy back. Sounds like they may need counciled on how your body needs to heal. Prayers for you

  • This is always one of the hardest problems to deal with. Until someone's been through it they just don't understand. Every cell in your body was assaulted by the treatment, your organs take a long time to heal and where you once had lung tissue you now have scar tissue.

    Maybe remind them how tired they get with a cold when they can't breathe. Explain that the scar tissue makes you feel the same way BUT unlike a cold, scar tissue never goes away. Your ability to get O2 and nutrients to the muscles and other tissues is impaired. That's one reason they call it the 'new normal'.

  • That was very helpful! Thank you! Do our lungs heal? I physically feel good with the exception of my lungs. I am in treatment and nowhere near clear but I find myself breathless since this new treatment.

  • I must say first of all that no one can know what you've gone through and are going through, but you! You're going to have to be strong enough to tell them when they start pushing that you simply can't do it. Although that sounds like a terse answer to your problem, that is exactly what you're going to have to do.

    I was having the same problem with my husband while undergoing chemo and radiation because he kept saying "you're not going to get your strength back if you don't push yourself more." I, of course would try to "push myself" and the result was that I ended up in the Critical Care Unit at Johns Hopkins for four days.

    We know our bodies and the limitations living with cancer everyday. My heart breaks for you because I know women already push themselves past the exhaustion state because more is expected from them. A lot of women work outside the home, then come home and take care of the responsibilities of keeping the house clean, cooking, washing clothes, not to mention the hours tending to their precious children.

    I think because we have set the bar high over the years, after being sick, they expect to pick back up where you left off and hit the road running again. You can't and I'm sorry to say, you probably never will again.

    Before I get blasted for leaving the man of the house out of the equation, we appreciate all that you do but I haven't met a man yet who could do what most women can.

    With that being said, I used to tell my children to practice saying "no" so that word would be at the forefront of their brain when they were asked to do something they knew they shouldn't do. Now you need to practice saying, "I wish I felt up to that but I just can't. My body won't allow me to."

    I wish you the best and pray that God will strengthen and heal your body. God bless you.

  • Always listen to what your body is telling you, if it's a not so good a day then don't push it, I just say to my husband "today is not a good day for me breathing not good" he has been given heads up and if he doesn't heed it then too bad. Take a small coffee stier that looks like a straw, have them pinch off their nose and tell them to try breathing through the stirer. Hopefully that will make them understand what you are going through. Hang in there and never give up.

  • Been thru this twice so I'll just be blunt. It doesn't matter what they think. Every survivor has different outcomes in their ongoing health. I bounced back from my first surgery a lot faster than my second surgery. I do what I can & if anyone has a problem with it then it's their problem. You only have to please yourself

  • Be true to yourself and do what you need to do for yourself. Sending you healing and positive thoughts.

  • I. have Stage 4 Lung Cancer and Multiple Myeloma I went through Chemo. immunio. and starting Chemo again tomorrow. I am always extremely tired and most days in a lot of pain. Since it's your body you do what's. best for you to get through this. I. have to nap every day. I do work. for myself with an office in the house so my commute is Okay. LOL

    Just my opinion.

  • Wow your an amazing person God bless you abundantly. Just join group i had lung lobectomy in July blessed not to have chemo just going thru some emotional struggles. Sending love and light.

  • What kind of chemo are you starting?

  • @anmcdonald If they don't understand see if your dr. will speak to them about it. It will take awhile but hang in there. Don't let any one get to you. Let your body relax and do what you can. If you can't than don't try to do it. Jo Taylor

  • So sorry they don't understand. You have got to put your foot down and have your doctor explain to them what your body has gone through. You cannot over do yourself just to please others. It is going to take time to get back to any kind of normal and your new normal may not be what you had before. I am finding that out as I go along and I have come to the conclusion that I have to please me first and then everyone else - we have been through a lot and we have to take it easy and take time to heal. It just doesn't happen overnight - Good Luck and so happy your scan was good. Mine first CT scan was also.

  • You have some great ideas from other people to help your family understand that you are dealing with a new normal. Here's a link to a good article on how cancer treatments have lasting effects on us even when we look "normal".

    cancer.net/survivorship/lon...

    Anita

  • anmcdonald -- I am so sorry --- I have Stage IV NSCLC and have now been in this battle for 19 months and every day no matter how well you might be doing is still a struggle. I reached NED (No Evidence of Disease) in August of 2015 and everyone kind of assumed it was over and I was cured, despect that fact that I was not and that I was still having chemo and not feeling all the well. They would see me up and out and looking "normal" and assume I was fine? But, they had no clue how hard I have to fight, and how much of an effort it is to get up, take care of me and my family and try to be my "old self"...that person no longer exists and I really get so upset when people say, wow you look great, so glad you are doing so well...."I'm not"....but they don't get it.

    And for me the NED did not last long -- My cancer came back last November and I'm still in treatment and have been from day one -- it does wipe you out and in my case, as heartbreaking as it sounds -- it's almost like many people have "forgotten". It's very lonely and it hurts me that some of my closest friends just don't seem to get it. I'm not one who likes to complain, so I don't go around telling everyone how awful I feel, maybe if they really knew, they'd show more compassion, I don't know? But, I do know that I find a great deal of support (and information) from being a member of support groups, like this one. I really feel the people the truly understand best are those who are in the the same place! My heart goes out to you...!!

    ~ Lisa

  • BAM!

    One more time this community has come forward with the best advice, and caring support that can be found. You are all so generous with your stories and willingness to open your hearts to someone seeking understanding in a complex situation, it just never stops astounding me! I just hope you all find the compassionate support you deserve as you move forward.

    ThePurplePlace mentions how lonely it can be, that just makes me sad, because that is a truth for many of you. Please continue to reach out to us and the other support systems, and to educate your loved ones concerning the reality of your new lives. I wish you didn't have to teach others but sadly, I feel many of you are put into that position. We humans aren't always the quickest at realizing what others are experiencing...but I do believe most people try and will understand if your doctor, nurse or social worker helps them...or if they do some reading. Honestly, you folks should have unconditional support. Period.

    Also, understand that I am NOT saying you are obligated to teach those around you, that is their job. But I think many of you do that without even thinking. You do need to care for yourselves in your new normal, to find that hope and strength each day. That's plenty. If you can, surround yourself with positive, understanding folks who support you.

    Sending warm wishes your way.

  • Hello my name is Kim and I was diagnosed in June with stage two lung cancer it was shock had surgery in August and start my chemo in sept 2016 my last chemo nov 23 and I went thur this with no family support and it was hard but with God grace and mercy I made it so I know what you are going thru God bless you

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