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NSLC - I am 43 diagnosed with Adenocarcinoma.. upper lobe removed

fabe's picture
fabe
Posts: 4
Joined: Jun 2009

Hi there,
I just found out about this site. It is wondeful that we can talk about our experiences.
I am 43 and after an xray from a check up oct 2008 they found that I have a 1.5 cm lung cancer. The next day I was in hospital they removed it and then it was followed by 4 months of chemo. 1 lypmph was positive.
I am not myself anymore. I have 2 little kids and a husband that is nasty as hell. He never undestood what I went thru. On the books he looks great 'cos he attened all the appointments and the treatment. but he was not really there for me. I lost weight. I lost my hair. I feel horrible even chemo ended mid march. I have numbness in my figures and toes. He does not help me around the house.

Am I the only one dealing with this horrible situation? My family live all in UK I want to go back to be with them. He refused to take me back there.

Is anyone out there with my experience? Is there anyone that I can talk to to understand me.

I am lonley and not so much scared for me.. more for my 2 little kids of 2 and 4.

I want to leave him and I am scared. I think if I this thing come back and for just say sake if I have 5 years to go. Is it not better to be alone and happy that to be treated badly with someone that does not care for me at all....

Has anyone any statistic on how long...is it going to come back... any one with any knowledge....

Thank you... Fabe
I wish the best for everyone.... Fabe

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I am thinking, roughly, that if you had surgery in October of last year followed by four months of chemotherapy, you are not yet out of the initial emotional woods, so to speak, and that you may need to sit back, take a deep breath, and think about things.

Let's start with this: "I am not myself anymore."

Of course you are not yourself anymore. You are likely to be riddled with conflicting emotions, including fear, rage, anxiety, depression, denial, self-pity, the list goes on and on, and many of us, most of us, have experienced many if not all of those emotions.

Consider that, with no background with cancer, as it seems, being told you have cancer especially in the lungs, and then having both surgery and chemotherapy inflicted upon you, is a recipe for post traumatic stress disorder. As I like to say, you were in a knife fight you could not win (surgery). And then they tried to come as close to killing you as they could without actually doing so, so that they could kill the cancer.

What's to like about that? What about that is apt to make you feel normal afterward?

Some very wise survivors here like to say that you need to accept a 'new normal' and I tend to agree. Later in your post, for example, you talk about fears regarding recurrence..."When will it come back?"; "How long do I have?" (I am paraphrasing).

These are, regrettably, questions you may have for the rest of your life, although I would submit that most of us are fortunate enough to be able to sublimate them, to diminish them, to ignore them. It takes time. But, as you point out yourself, indirectly, you are a new you. You have a new normal to deal with.

Next, we have the issue of your husband. You admit that he has been steadfast in standing by you, although you are clearly of the opinion that it was all 'for show'. I know people like that, I do, those who show up because they are supposed to, because it makes for a good image, not just in CancerLand, but in all of life. It is sad that this is so, but I am not so sure that your husband is a candidate for that.

You know better than I do, obviously. I can only suggest that you cut him some slack and consider that he has had a tough row to hoe as well. I firmly believe that being a caregiver, particularly a loving caregiver, is much more difficult than being a survivor (I am a head/neck cancer and lung cancer survivor, by the way).

Please understand, and I speak as a man myself, it is very difficult for us to be in situations, particularly with loved ones, but in general, where we feel completely out of control. (I suspect that this is true regardless of gender and have just read an interesting piece about that, the issue of control.) But I digress.

Re the numbness in your fingers and toes, this is not unusual following chemotherapy, and may last for months or even years. I do not have the name of it at my fingertips (I have not experienced it), but have read about it and know that doctors are in the process of developing ways to cope with it and even overcome it.

That, the numbness, and the loss of hair, the loss of weight, they are not the end of the world. You can overcome all of these, as you have the cancer. The best news in your post, frankly, is that a lobectomy was performed: this generally indicates that they hoped to remove the disease in its entirety, with the chemotherapy coming afterward as a general effort to sweep up any strays.

You are a relatively young woman, Fabe, but I think that other lady survivors would agree with me (I hope) that as a woman, and as a woman of your age, you are going to have some hormonal issues involving the surgery perhaps but especially the chemotherapy.

I bring that up only to suggest that you not jump to any rash conclusions at this point.

Work on yourself.

Exercise, eat well, do things that you enjoy.

You have a new life. It will be a different life, but it does not have to be an abysmal life. You will decide that, not the cancer.

Best wishes to your and your family.

Hope and Humor!

Take care,

Joe

fabe's picture
fabe
Posts: 4
Joined: Jun 2009

Thank you Joe, It is so nice to hear your point of view. I have had a tough time and it seems that the person that I thought should be the most undestanding and compassionate is not. This hurts sometimes more than the cancer. I have going to make some major changes in mylife to make sure that I look after myself and my kids.
I have not gone in details of some of the stuff that went on and I do undestand it is harder for a caregiver. My mother came over from UK and she saw be get sicker thru the Chemo and tried to do all she can. My husband was rude to her and even screamed at her several times while I was in bed after my chemo totally out of it.

I do hear you and I do respect that you try to put yourself in caregiver shoe... but it was not the same.

Thank you for your support and kind words....

I do agree with you to see things as 'It is what it is'. I do in a lot of ways. I get up and look at my kids and think how bloody lucky I am to be here.

I am trying to eat healthy and be healthy. 2 little kids and not a supportive husband and no family support in CA does not help.

I am not giving up..... I am going to kill this thing.....

Take care joe,

Fabe

beckysboys402
Posts: 7
Joined: Jun 2009

I understand your need to be with family right now. I think that it is natural need. My family lives in another state and I would do anything to move there and may yet, because I live alone and this is something that is hard to handle on your own. Can one family member come visit and be with you for a week or two? I think that may help some. You can contact me anytime if you just want to talk. No judging whatsoever! Best of luck to you.
Becky

HOPE2009
Posts: 3
Joined: Jun 2009

fabe, I'm a surviver too, and now quite ancient at age now almost 74. I remain shocked that so many women still die of cervical cancer like I had at age 35 and nursed my mother until she died from the same type cancer at age 42. The diagnosis was one of the most
frightening ones of my life.

Now I must be the sole caregiver of the man, my second husband, who is the love of my life and though I can't put myself in your shoes, when I was diagnosed I had left my military and abusive spouse over seas along with my four children and was back in the states very alone with no one to care for me, but me.

There are days, now, when I just wish it would all go away. And at times there is so much on my plate, I find myself frustrated and run out of patience with the very normal responses of my spouse that so often goes with chemo. I do my best to provide healthy and nourishing food. Why won't he eat? At times I feel like screaming and saying, Don't you understand it is the only thing you can do for yourself to make your self better. Then two weeks ago, he gained three pounds and my patience was rewarded. The urge to scream would have done no good.

One of the most positive aspects of the Cancer Center at U.C. Davis, in Sacramento, CA, where my husband is receiving treatment is a terrific counselor who is available to all. If you have anyone available and your husband is willing to go with you, having a person who understands how patients and their caregivers feel and being able to talk about all the feelings can really help.

It is trite to suggest if your husband is truly abusive or violent, counseling might help, but having someone who will listen to both sides of all the feelings and the fear that comes with a cancer diagnosis, may help. Sometimes the fear of loss of someone you dearly love may cause one to blame the "victim" for a condition they never chose. And fortunately, those who have cancer are no longer designated as "victims."

BTW, I lived for 3 years a long time ago in Marlow on Thames, I think at times I'm a misplaced Brit. And just to add, as a reentry student, a choice I made following the cancer and the surgery that removed it and it never came back, my thesis for my MA was on
Institutionalized Violence and American Women. If your husband, as I said is truly a violent man, there is no reason to stay and subject your self and your children to such a circumstance. You must fine a way out.

I've not as yet set up a private e-mail for this forum, but will listen as sometimes it just helps to talk and you've taken this first step with sharing your feelings here. I've chosen my screen name for a very valid reason, I still have hope for this year and maybe hope is all I will have, but it is worth considering along with the fear and anxiety.

My best to you fabe. From a different perspective, like others, I understand.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Please don't misunderstand what I am about to say as I am not defending your husband. I just want to let you know how my husband reacted and the problems we are having since I have been diagnosed with 2 different types of cancer.

Our marriage has never been "perfect" but we have always loved each other and stood by each other through many tough times, both emotionally and financially. We have had squabbles in the past but never what I would consider a fight - just a difference of opinion.

My husband has been to every appointment with me and has listened to everything the doctors say I will be going through and what to expect for side effects. He has not done anything extra for me around the house but I believe it is because he knows that I want to stay independant for as long as I can. If I start to get weak or too sick to manage my daily chores I know he will step in and help, he justs wants to keep things as "normal" as he can until treatments start (they start tomorrow the 23rd)

In the beginning I think my husband was in denial - maybe he still is. He acted as if nothing were going on in our lives and was very quiet, he never talked about the cancers. After a couple of weeks he was finally able to ask me a few questions and we have had many long discussions about how we are going to handle this, we also discussed many of the what if scenarios. He is trying in his own way to be supportive but just doesn't always know what to do.

Even now my husband and I will "snap" at each other over something trivial, it's out of fear and frustration not anger and we are both sorry afterwards. It's true that the caregivers don't know what we are going through (only other cancer victims understand) but it is just as true that cancer victims don't know what the caregivers are going through. I personally feel that it will be as hard, probably harder, on my husband than it will be for me. Yes, I am the one who is going through all of these horrible treatments but he is the one who will be worrying whether he is doing everything the right way and making sure I take all my meds and nutrition when I should. I feel guilty everyday for putting him through this even though we both know this was not something done intentionally.

I sincerely wish I could give you advice but I don't know the full situation of your home life. Is it possible that your husband just can't cope emotionally with everything that has happened. Maybe he is angry, not at you but at the cancer and what it has done to your lives. I know there are many counseling agency out there that specialize in cancer care for the cancer victim and the caregiver and strongly urge you and your husband speak with one before you give up on your marriage. If you two were in love before all of this happened then I am sure you can both work at getting back to that point again.

Best of luck to you and your family.

Glenna

nanaof7
Posts: 127
Joined: Feb 2009

I live in southern calif. my life has changed, whenever I would express my fears my husband would tell me to stop worrying which was no comfort for me but I found out later after telling how much I hated what he was saying he explained he didnt know what to say; now that I am home from surgery he makes sure meals are made but housekeeping is out the window I have learned the house is not as important as my health and do what I can, my feelings are I was given a second chance and I am going to make the best of it many people dont even get the opportunity of treatment and just count the days. we are here for a reason yours might be to raise those beautiful children and if you are bitter it does not help them you will know in time what to do about your husband , I agree with the last post there are changes I went threw a depression for surviving when so many don't but I needed to talk to people and find my purpose for making it hang in there and post whenever you feel down there is always someone here to help

cabbott
Posts: 1048
Joined: Aug 2006

Dear Fabe,

I am a two time cancer survivor: first breast cancer back in 2002 and then lung cancer in 2006. The nurse I had back in 2002 was really really good. She seemed to know just what kinds of things I was going through or about to go through even before I realized it. One thing I learned from her is that when treatment ends, our fears and needs often increase. When we are busy doing something about cancer, we feel like we are beating the beast. We are doing something positive and know that we are getting the best medical care possible. During treatment, we have nurses and doctors paying attention to our needs. Then all of it ends and we don't have anything to support us even though we still have all those worries. My nurse said I may need a support group at that time because my spouse would probably think that everything had been done, I was cured, and life could return to what he remembered as "normal". That was the understatement of the year! My husband says he doesn't even believe I had cancer once since I was never sick and he never saw the tumors. He is convinced that the doctors just wanted some money to go on vacation and figured my insurance company could provide for them! I'm still married to him in spite of his weird ideas. But I had to have support and he certainly wasn't it when it came to cancer issues. A social worker at my oncology clinic got on the internet and located a group called The Wellness Community that specializes in providing FREE emotional support for cancer patients and their families. They are both community and internet based. One turned out to be 4 miles from my home. Later I also found support at this site, which fits with my busy schedule better than a face-to-face group right now. But sometimes I needed a group with arms. Sometimes I just need what I find here. It would be nice if my husband was more supportive, but that's not his strong point. People aren't perfect. A magazine I read mentioned that women need girl friends so that they aren't totally dependent on their husbands. Girl friends, formal support groups, whatever. The fact is, our spouses may not be up to doing everything we need. It is healthy to have support outside the home so that your family isn't overburdened doing things that wear them out. If you can convince your husband that going to a support group will make it so your needs are met without burdening him and your kids, he may go along with it. If he thinks that cancer issues end when the last chemo treatment stops, maybe your doctor can talk to him about the value of support systems. You are not alone in having a spouse that doesn't or won't understand what you are going through. I hope you aren't in a dangerous situation. Mine is okay, but it gets stressful if I expect more than he can give. It seems to work better if I expect him to do the best he can and then I find the rest of what I need from others like the support group, my church, and my friends. But if he got abusive, that would be it. It's one thing when a husband can't understand the cancer experience. It's another to get mean, threatening, or physical.

Other things that seem to help chase the negative emotions away include helping others fight cancer. The Relay for Life raises money to fight cancer of all types. There are many other fund raisers as well and participating in them gives hope. Helping others get through diagnosis and treatment can also help. Doctors are still learning how to support us survivors. Daily exercise is proven to increase survival time for most kinds of cancer. It strengthens our immune system, bones, and muscles so that we naturally fight off those nasty cells, don't give them a cushy place to set up house if they try to metasticize, and impoves our current quality of life. Exercise might mean just walking around your house on bad days. It doesn't mean a marathon. Eating a balanced diet helps too. Green tea (sencha variety), a rainbow of veggies, and whole grains, fish and good oils all help too. Teaching your kids good health habits help them stay healthy while you regain your balance. It takes time to find a new normal, but it is possible. Good luck!

survivor-twice
Posts: 4
Joined: Jul 2009

Hi Fabe,
My prayers are with you. As time goes by you will feel much better and stronger. Eat well, BE SELFISH, make yourself happy and ELIMINATE AS MUCH STRESS AS POSSIBLE in your life. Demand more of your husband in your time of need. Hopefully, you have some friends close by and possibly your family from England could come and visit to help you through this. During my treatment I lost my hair, was so weak I could hardly walk and lost 50 lbs. The only thing I could eat or drink was Ensure. Maybe there is a church group or American Cancer Society volunteer group that can help you. Don't feel sorry for yourself because if you become emotionally and mentally strong and BE OPTIMISTIC you will get through this. I was 63 when I went through Lung Cancer and I was disappointed in some of my family members, but I was determined to beat it and win that battle and so far I have. I'm now living by myself and loving it. Since I'ved had two major cancer battles and survived, I realize we have to have faith, be optimistic and sometimes be selfish. If I can help or you need someone to talk with I'll be here for you.
Survivor-twice

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