How to Live Life Everyday-Thoughts?

[ursol]

I would love to get perspective from others living with advanced lung cancer on how they manage to live life each day as normally as possible. I tend to be very positive for the most part and do not even need to take anti anxiety medicine anymore as I have adjusted to my situation. But I find daily decisions difficult such as deciding if I want to add new curtains to my bedroom. It is something I wanted to do but now I say, well let's wait until my next scan to see if I'm still stable because if I'm going to get really sick, why get new curtains.

That is just one example of my daily thought process but I'm talking like this all the time. The other problem I have is spending money. If my husband or the kids want to buy something that I think is not a necessity, I always argue with them that we have to save money because if I don't survive long, they lose the primary household income. I spend way too much time thinking about money. Am I the only person dealing with this, thinking like this. I just can no longer find any peace. My oncologist is always making remarks to me such as I cannot believe you continue to work through all of this and my answer to him is "who else is going to pay my bills and insure I have medical coverage to pay you to treat me". May God decide the right thing to do is to just cure us all and do away with this disease called Cancer.

Lilly

[ernrol]

Lilly,

I try to do the same as if I did not have cancer. We had plans to do a lot of remolding of our home before I was diagnosed. I decided we would go right on with our plans. My attitude is if I am going to spend the money for improvements, then I am darn well going to stick around to enjoy them.

My mom when she was about 80 she needed a pacemaker. She said well I am 80 years old is it worth it and said it’s up to me and my wife. I knew she wouldn’t waste the battery because it cost too much. I was right two batteries later and this Sunday she will celebrate her 99th birthday.

So I say don’t hold back go for it. What ever it is.

Stay positive,

Ernie

[Andrea]

Lilly,

I don't have thoughts per se, but wanted to let you know that you are not alone.

In June my dad was going to spend a small fortune on a pool with aqua shield so we got him a chest xray first just in case. Negative results fooled us a couple of months later, now he has cancer and his pool. (At first my mom and I blamed the cancer on the pool expenditure )

My mom had wanted new chandeleirs, but didn't want to spend on them when diagnosed so she always said at her two year mark she would get then. And she did

Now my parents spend on what they want, they figure they have cancer and may as well enjoy. However they are retired with no dependent children (except me at age 34).

I wish you can find peace but I know it is hard. I think it is so honorable that you are worried financially about your husband and kids. Things are so expensive these days.

Maybe set goals for yourself like in a few months buy the curtains, etc. You definately deserve to enjoy things!!

[daddyslittlegirl]

Hi Lilly,

I can't really add much since it's my dad who has the disease, but I just wanted to say you are in my thoughts and prayers. I pray you DO survive long. So go ahead and get those curtains and do something for yourself. You deserve it!

[Welthy]

Bless your little heart Lilly! Curtains! (But I get what you mean.)

Everything about our home (except for essential maintenance items) has been placed on "hold" since my husband's diagnosis. Neither one of us gives a crap about that stuff anymore. We just want to do what we can to enjoy ourselves together, albeit far more limited then before he had cancer.

As far as how different late stage people handle these issues, it is like comparing apples and oranges. You have been through a lot of treatment/surgery and it can't help but scare you and skew your thinking. I see it happen to Tony also. Dying isn't in his vocabulary or in his mind and that is how he chooses to face his cancer. It does slip out in weird ways. He steadfastly refuses to let me take down the back fence. I have no clue why and he won't really say, but something about me doing it bothers him. He tends to be more anxious about little things now.

You are also carrying the ball financially for your family on top of it all. I cannot believe you are still working -- you are truly an amazing woman. (I wish you luck with a lottery win if you play! Wouldn't that be sweet right now?)

Please be gentle to yourself. I know you are worried about the kids and bills, but try to live some life too. Good luck on your new treatment.

Hugs,

Welthy

[Flowergirlie]

It is very admirable and responsible to be aware and concerned about the future for your family, of course, but not worry about it too much. I am/ was on the other side of the scope and what I really wanted was for my husband to be as happy as he could be. Sometimes it meant something he REALLY wanted and other times there was no way to achieve any happiness. It is important to be good to yourself, maybe splurge a little on something that is not a necessity once in a while, if you can afford to. It balances out. Money is not the most important thing in the world.

I can say this easier than done, I KNOW, but if you can try to live life as much as possible everyday without basing everything on what your next scan shows, maybe it will help you with your decision making...???

I am VERY sorry you are going through this.

Hugs...Flowergirlie

[Liz13]

Dear Lilly,

I know exactly what you mean. In the beggining, which wasn't so long ago, I could only live 3 months at a time. The first 3, I was just plain scared, the 2nd three blew by. Then I started the 3rd three. And recently relaized that this is stupid. I have just as much right to step off a curb and get hit by a bus tomorrow, as everyone else in the world. And I'm certainly not going to live my life betting on that happening. So I'm moving on. Planning my life like I did before I was DX. Because plan's can change, they always do, but we'll never get the time back we are wasting,waiting for someone to tell us we're "Cured". Live for the day, plan for the future and create memories with your loved ones. Wear that special dress, burn that special candle and use your good perfume. There is no day more special then this one. Hugs, Liz

[laban]

Lilly,

I'm so sorry you have to go through all of this and be the breadwinner too. Try, try, try to just enjoy YOUR life. It's not selfish, you deserve it. Live as much as you can. Keep the faith and God will provide.

Laurie

[TracyD]

Hi Lilly,

I struggled with the issue of spending money on "nonessentials" for the house for a long time. We had just moved into a brand new house only months before I was diagnosed, and believe me, there was a lot of work that needed to be done.

For a while I was paralyzed with fear and doubt. I thought, why bother putting up curtains and pictures and painting if I'm not going to be here to enjoy it. But at some point I realized that I AM still here, and I DO have a life, and I want to enjoy it. Part of that enjoyment is making my house the home that I wanted it to be before I had cancer, for both me and my family. I want my children to have a home, with or without me, because I know my husband won't be hanging curtains if I'm not here!

Lilly, go out and get those curtains if they will make you happy. Do all the little (and big) things that will make you happy now, don't waste time waiting for a better time.

Take Care,

Tracy

[Larry]

You deserve all the enjoyment that you can muster up. My wife did not let it knock her down even after she had her re-occurance that finally won out. Her view was why worry about dieng as only GOD hold's the answer to that question...

[myrnalu]

I have those same thought alot but I try to think positive.We need to enjoy as much as we can.

[teriw]

Hi Lilly,

I hate that anyone has to think those thoughts. I know that my hubby is similar, specifically with spending money on himself.

He's avoiding getting a tooth fixed because he doesn't want to spend the money on it. He won't get some cosmetic damage on his car fixed (a car he really loves) for the same reason. On the other hand, he wanted to buy me a very expensive piece of jewelry (which I managed to talk him out of, bless his heart).

I can't imagine what it's like from your perspective (or my hubby's). But I don't think there's an easy answer, except to know you're not alone and that the feelings are natural. But also to know that you deserve to treat yourself well, whatever that means to you.

Wishing the best for you, Lilly.

[Don M]

Hi Lily

I try living in the present moment as much as I can, but there is no way for me to get away from the reality that lc is the central fact of my life. I am putting off going on trips and other things that involve spending money because I will need it for my treatment. For more than 3 years now I have been either doing treatment or about to start another treatment. I had a few months worth of breaks where I was NED. That was nice. I still manage to stay positive and am not depressed, but boy I am really getting tired of dealing with it all. Make it go away.

Don M

[golden275]

Lilly I too struggled with that for almost 2 years. I kept thinking why plant my tomatoes , I may not be here in the summer, why buy new sweaters on sale, I may not be here next winter - on , and on and on.

Finally, I had enough and decided to enjoy myself. I don't know what turned me around. Maybe it was that one dr told me I had 6 months if I was lucky and a year later I was still here. I really don't know why I changed but slowly I started to live again. It didn't happen overnight.

Not having a lot of money, I usually buy sweaters and jackets at the end of the season. I decided that I did need new sweaters and if I wasn't here, the Salvation Army or some other organization could use them. However, the cold weather came back and I'm enjoying them.

Hopefully you too can settle down and live as happy as you can.

[trish2418]

Hi Lilly,

BUY THE CURTAINS!!!!

After my last chemo treatment I was very hesitant to spend money because "what if...". It took a couple of months, but I finally decided that I didn't go through chemo and radiation to be afraid to live and to be consumed every moment with and to make every decision based on "what if".

Like you, I'm the main breadwinner in the family. I worked all through treatment and continue to work and wouldn't have it any other way. My daughter is on my insurance plan. I like to think that if something were to happen to me, my husband would rise to the occassion and do what needs to be done for my daughter. I have no doubt your husband would do the same.

Live your life lustily, Lilly. You've earned it. And let us see a picture of the curtains.

Trish

[alexan]

Dear Lilly, I paint my house, in the back of my head was that ? mark but we need to live for the future. We need to think that we will be here. Get your courtainshugs bucky

[barbaraSanAntone]

Hi Lilly, just found this thread and I will tell you this, actually heard from a tourist (I'm in the middle of SanAntonio, Riverwalk and Alamo).

One lady was telling her friends who had bags of goodies: I'm not buying nothing I cant eat.

I'm a great one for buying "stuff" but finally said "no, not buying nothing I cant eat"

[Connie B]

Lilly,

If you get hit by a bus tomorrow then what??? No money, no insurance, no curtains. Just some food for thought.

It's hard to not think that way at TIMES, but WE really have to live life and enjoy life to it's fulliest. WHY NOT? Don't fret the small stuff, go buy the curtains. Splerg a little!

((((LILLY))))

[barbara5452]

Lilly, you spoke exactly what I have thoughts of. I too struggle to pinch a dime not knowing if I spend it I will take away from my family if I should die. I sometimes (alot of times) feel my life is at a standstill not knowing what to do. But I try to be positive as I'm sure you do. Funny we all think pretty much the same at some point during all this. Thanks for the post, makes me feel no so alone...

[stephf1958]

Lilly,

Buy the curtains!

You are very strong to be able to work through this. I actually begged my doctor to return to work, on a part time basis, because I am totally bored and not meant to be a homemaker I will start working (telecommuting) May 1.

Does your work offer disability pay, or your state? With advanced NSCLC you qualify for social security (and your kids will get $ too), but think you need to be totally disabled for a number of months. May be worth looking into. Once on SS, you get Medicare too.

As for buying stuff, personally I believe in retail therapy (within reason). Also, my mariage of 20 yrs fell apart last summer (before I knew I was sick), and I refinanced our house to pay him off and get some extra $ to fix it up. I had made only a small amount of the planned improvements when I got sick.

Now here I am, stuck home looking at all the things that are broken and decided now was as good a time as any to get the work done. I figure that if I have to be home, it might as well look good, and if the worst happens then my kids will have a nice home. I could save the home equity money for a "rainy day", but where's the fun in that?

[Connie B]

10 Actions People with Lung Cancer Can Take in Their Fight for Recovery:

1. STAY IN THE MOMENT. Sometimes people with cancer have trouble seeing past current challenges and project worst-case scenarios on the future. Because no on has a crystal ball, it makes sense to focus our energies on resolving today's problems. At the same time, it can be helpful to MAKE PLANS FOR THE FURTURE. The process of making plans and setting goals can be a positive experience.

This statement is in a book called "Frankly Speaking About Lung Cancer Stepping Back to Take a Closer Look.:

Lilly I agree with the fact that you and your kids would qualify for Socical Security Disablity if needed.

Keep in mind that a LOT of people were told to get there affairs in order and then poof 15, 20, + years later they are still here! It happens more then we know.