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How to deal with waiting and waiting and waiting


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Hi, everyone. I'm a relative newcomer, since my husband was only diagnosed in late April and it took me a while to find the board. Right now, we're in "a holding pattern"; my husband had a lobectomy (upper right lobe) on April 26th, after a needle biopsy (that collapsed his lung) showed squamous cell carcinoma. He wasn't able to go through with the PET scan that they started because of his severe claustrophobia. They had planned to sedate him for another one, but then decided, based on CT scans and broncoscopy, to go ahead and operate without any further delay. The surgery did find one involved lymph node, and now the tumour board has recommended chemo.

But we also need a new PET scan, this time with sedation, and have to wait until 10 June for that because of "hot spots", etc... We're meeting with the oncologist after that, on the 14th of June. So, as I indicated in the subject, we're just waiting and waiting....

Although the incision itself seems to have healed very well, Len is feeling a lot of discomfort under the right lung -- the surgeon said it was related to the surgery and would go away, nerve pain, etc., etc. A number of people on this board talked about the same thing which gave us some reassurance. But he just doesn't feel like doing much, even though everyone, doctor, nurses, therapists, say he should push himself to do as much as he can, especially walking. He's feeling down, and in pain, and just wants to sit around and not do anything. He certainly doesn't want to see anyone, even though when he does (our kids came down last weekend, for instance), he rises to the challenge and seems to do better.

So what I'm asking is how hard should I push him? I suggest taking a walk, and sometimes he'll do a very small one, but he doesn't want to increase that walk the next time, even though it seemed like a good idea to me. I don't know if I should get a friend to drop by -- he says "NO" -- for a short visit. I don't want to over do it but I have a feeling he'd just crawl into a hole if I let him.

Any suggestions?


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Hi Ellen,

I think I must have missed your introduction earlier - I don't remember posting anyway. Welcome to LCSC! This is an absolutely wonderful group of people that you have made contact with and you will get a lot of answers to your questions here.

My husband has not had surgery, so I can't help you with that, but I probably can with the way he is coping.

You husband sounds exactly like my husband - doesn't want to talk about it, angry, etc. There is another lady on here who has a similar situation, but I'll let her contact you if she sees this post.

I just read your first post where you said

he tends to be a pessimist at the best of times
:wink: I don't know that I would use the word pessimist to describe my husband, but he can be that way. He is very outspoken, strong-minded, strong-willed, self-disciplined and opinionated about things. He would definitely be described as a choleric, while I'm just the opposite - sanguine. :roll: We actually are a perfect match, though, because his strengths help me, and my strengths help him. After 36 years, I've just learned when to confront him and when to keep my mouth shut. :P Sometimes I miss it, but even when I do and what I ask or say makes him angry, it usually turns out that it was the right thing to do. Feel free to PM me at any time, and we can compare notes.

Once again, WELCOME. :D

God bless you,


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I can relate to your husbands desire to avoid others and "crawl into a hole". I felt the same way. I was diagnosed at stage IV two years ago. The prognosis was gim (6 months at best). Of course we were flooded with caring and well-meaning family and friends. Everyone was entitled to know the "scoop" so I had to keep going over and over the same dismal crap. All I accomplished was to make both them and me feel awful. It was NOT fun. Now can you begin to see why your husband might not be clamoring to entertain people?

I think it may be different for the person with LC and caregivers. Or perhaps it's really just a personality thing. I really don't know.

I just wanted to share my perspective. By the way I'm not quite as anti-social as I was in the beginning. Perhaps I've grown a thicker skin by now?

Best Wishes to us all, Dave S

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Thanks for your responses. As you well know, it helps to have someone else's perspective when you're trying to deal with the unknown. We went on a successful walk today -- along the waterfront and into a marina near where we live -- and Len was quite pleased with himself afterwards. I'm just thankful that he's building up lung capacity and strength!

I've been doing my best to spare him from making lengthy explanations to other people, trying to do that myself (something he is more than willing to have me do; he even wants me to do the major conversation with the doctors involved), but I can certainly understand not wanting to have all the well meaning people hovering around and clucking with concern. I just don't want to see the gloom deepening around him, and he is someone who responds to the company of others, even when he thinks it's going to be an ordeal. Still, this is unlike any of his other, relatively minor (if you can count legionnaire's disease and three spinal surgeries as minor -- they do seem so in comparison) illnesses.


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When I was first diagnosed, I didn't think it was "that bad". I hadn't done any research and my take on it was that the tumor would be removed and life would go on pretty much as it had...

...and then reality hit. I had it ALL wrong. Lung cancer isn't exactly "easy"...

..and as all those facts started to sink in, I panicked. Of course...and I SOOOO wanted to just crawl in a hole, me and my dawg...curl up in a ball and just stay there... But I wasn't "allowed" to. Not one day of self-pitying and staying in bed. The doctor told my husband that I had to get up and dressed every day and do something...and he took that to heart. I wasn't real nice to him. I cussed at him, I clammed up, I wouldn't talk to him...real grown up, huh?

...and the shock started to ease, I didn't feel a sharp pain in my chest when I thought about the grim possibilities (well, not as much). I started to move again, to think about the future (be it getting through one day or one year, depended on the mood).

I wanted to see friends and after a "not so nice" visit with a well-meaning lay minister ('Are you prepared to die?' WHAT??!) I wasn't so hot on seeing anyone beside the "core" of child, spouse and mom. My mother spent days with me, made sure I was "okay" (and my bet is, she was there to keep me from crawling in that hole).

Setbacks are to be expected, don't let 'em keep you down. Absorb the shock and keep moving. Standing still is a bad thing, it allows all the doubts to pool and collect and the negativity! Select friends for him to see, some will be a positive and others will not be. He needs people around him that won't treat him "different", he needs to feel NORMAL, he needs to laugh, to see the miracles of nature, he needs to feel the sunshine on his face and the rain on his shoulders... He needs to feel so he realizes he is STILL living and still needs to fight.

Keep pushing him, don't take the gruffness. He's scared and he's targeting you because you are near and dear and "comfortable". Don't take it personal, just keep going. You're doing the right thing.

All my best,


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Hi Ellen. I had surgery in June of 2001. It took me a good 6 weeks to even begin to feel like myself. Up until that time, I also withdrew and didn't want to see anyone. Depression is a big issue with some of us on this board. I didn't have chemo or radiation, so it was pretty much due to the cancer and surgery. If he does not start to seem more interested in things soon, I think it may be time to talk to the doctor about depression. Just my experience with it. Good luck to you and your hubby.

Nancy O.

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I avoided people and did not want people to know I was sick. I have always been a strong person, and I didn't want people to see me as being weak. I wanted to be treated as normal as possible. I wanted people to see me as a viable, competitive person, who still had something to give. I also hated the stigma of lung cancer. I got so angry when asked "Did you smoke? Is it bad? Are you going to make it?" Then there were the "I knew somebody, that knew somebody with lung cancer....they died, but that want happen to you- they were too far gone when first diagnosed." How about those well meaning family members totally in denial " You don't have lung cancer anymore, those growing nodules are just a fungus." Finally, as I grew more used to the notion of having this disease and came to accept it, others did too. Everybody in town was tlking about me it seemed. I hated that, I certainly didn't want pitty, or sympathy. Yet, I now realize that other people mean well, they are uncomfortable with cancer. Only, I didn't want the job of having to make them feel o.k with it. I think God has a plan for all of us. Nobody wants this disease, and it is not a choice even if you smoked!!! It is all about how you perceive this disease and see yourself with it. I refuse to be the victim. It helps me, by helping others. I Have become involved with tobacco awreness and teen smoking. I don't mind telling people I have this disease anymore. I am no longer ashamed. I don't deserve this disease, nor does anybody else. I will share my experience to help others, to spare others of what I have had to go through.

Ellen, just give him time to make sense of it all. Set small goals daily. It is o.k. to push him a little too. If he is to survive this disease, don't let him give up. It is fine too feel sorry for yourself sometimes, but then move on. Plan activities to get him back amongst the living. Just keep encouraging him. And give yourself a break too!


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