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Kelly, I too joined after you left, but I wanted to add my condolences to those of others. Your family sounds as if they did it the right way and I'm sure your dad would have loved the way you "saw him out". Keep on living in that spirit and he won't be forgotten. Ellen

Welcome from another relative newcomer, Don. As the others have said, sorry that any of us have to be here but it's a wonderful group. And speaking of wonderful, your mother has a wonderful son -- and it sounds as if she also has a wonderful primary doctor. I'm so glad he went to bat for her and that you've found the university centre. Keeping up the good fight - I'm sure you'll be getting some real answers soon. And keep in touch with us to let us know how it's going. Ellen

Welcome from another relative newcomer, Don. As the others have said, sorry that any of us have to be here but it's a wonderful group. And speaking of wonderful, your mother has a wonderful son -- and it sounds as if she also has a wonderful primary doctor. I'm so glad he went to bat for her and that you've found the university centre. Keeping up the good fight - I'm sure you'll be getting some real answers soon. And keep in touch with us to let us know how it's going. Ellen

How wonderful. As others have said, you give hope to us all. Many more years of good health -- and keep on posting! Ellen

I too want to add my thoughts and prayers to those of everyone else here. I'd hang in there as long as he seems comfortable and aware -- the idea of asking him is a good, if difficult, one. Do you have some one else with whom you can share this - a family member, a good friend, an advisor, spiritual or otherwise? Not that anyone but you (and your husband, if he is capable) should make this decision; just that you need support at this terrible time. Please keep up updated on what happens with him and with you and know that we are all thinking of you. And reminding ourselves about the need to clarify our own decisions, via a living will and very frank discussions with our families, no matter what our situation. Ellen

Congratulations -- sounds like quite a night! And I second the request for a picture -- nothing like a new baby! Ellen

Dear Janet, It's so hard to know exactly what to do. When my husband was diagnosed and underwent surgery, he wasn't crazy about seeing anyone (and didn't want ANYONE outside of the immediate family to know), but my grown kids did come for the surgery and his sister, nieces and nephews and other relatives did call -- for which he was surprisingly grateful. I think it reassured him that he really WAS loved. He is still somewhat negative about seeing people but actually is happy when it does happen. Everyone, of course, is different but you have to be able to do what is right for yourself as well as him. I think Rochelle is right when she says that you have to do it -- that you've got a couple of weeks, and if you let them know now that you're coming, hell or high water, and that you're going to be there to help as well as to cheer him on in his recovery that may put it into a slightly different perspective for them. Keep us posted and let us know what you decide and how it goes. You have our love and sympathy -- this is the time YOU need to be as brave and forthright as possible! Ellen

Dear Marie, Glad you've gotten a "game plan" -- that must take a lot of the tension and guess work out of the air. We're still awaiting our - more than a week to go .... Good luck on the 10th with the chemo. We'll be thinking of you. And think of us - Len has his PET scan on that day. Ellen

Good luck, Pat with the scan. I know how agonising the wait can be -- we're waiting for this coming Thursday when my husband has a PET scan and THEN for the following Monday when we meet with the oncologist for the treatment verdict...trying not to let our imaginations run riot with the possible results. Keep us posted. Ellen

So glad you're feeling better and that you've gotten real answers plus a reliable sounding treatment plan. Hope the back holds up -- my husband's spine is riddled with arthritis but it's bearable. Lots of ibuprofen helps! Your attitude is phenomenal. Good luck with the pole beans -- I never got around to doing almost any of my usual planting this spring. Now you make me feel like a real laggard! Ellen

Dear Marie and Elaine, I want to add my welcome to those of the others on the board. I too am relatively new to all this -- my husband, who is 75, was diagnosed in late April and, as you can see below, is awaiting the next PET scan and chemo options -- we'll know the 14th of June what lies ahead. He is recovering now from his lobectomy and doing relatively well, all thing considered. The biggest problem now is anxiety and not knowing what we're going to hear on the 14th. The psychological angle is so huge - I'm doing my best to keep him positive but sometimes it's really hard. As this discussion has demonstrated, deciding on the right options can be confusing, but you just have to forge ahead and do what seems best at that particular time. Which is what we're doing -- and you too, I'm sure. What's nice is having all these wonderful people, who know exactly what you're going through, pulling for you and encouraging you along the way. And sharing their incredible stories. I know I've become dependent upon this board -- in the best possible way -- and I'm sure you will too. Ellen

Will be thinking of you and sending every positive vibe I can muster your way. Recover quickly and get home from that hospital. Ellen

Dear Fay, Thank you for your remarkable story -- it truly is an inspiration. It gives hope to us all (I speak as a newcomer to all this and as one who was beginning to take a very bleak view of it all). I'll look forward to hearing of your ten year anniversary ! Ellen

My husband quit after his lung xray and "the spot" that changed our lives. It was made easier by being in the hospital for a week before surgery because his lung collapsed after the needle biopsy, but he is adamant now that he will never go back. He had given up a number of times before but this is the first time I've seen this steely determination on his part. Before he didn't really "want" to give it up -- just thought he ought to. Now cigarettes, along with the lc, are The Enemy. When he went to the doctor because of coughing up blood (which led to the xray which led to...), she gave him a prescription for wellbutrin, which, apart from its antidepressive qualities, has been proven to reduce the cravings for cigarettes. He never filled it because he ended up in the hospital with the collapsed lung, and he doesn't feel the need for it now, but I have it in the back of my mind if those cravings ever come back. You might check with your doctor to see if it would work for you (and not interfere with your treatment/other meds). Good luck -- cigarettes ARE the devil! Ellen

What a great trip - and some great tips for those of us who dream about similar excursions. I don't know that I could persuade Len to get into a wheelchair even if he were ready to collapse but the advantages you point out just might win him over. I thought haggis involved sheep stomach (plus porridge and whiskey) but I have been known to be wrong (as my former students loved to point out....as well as my kids and, of course, my husband). We're just beginning the lc bit but when Len went into the hospital for surgery, we talked about going to Cornwall when he got better. Who knows -- you lot did it. The Cornish also talk funny (but the Scots whiskey is better than the Cornish cider, I know). Len's an artist and we have dreams about a little cottage near the coast where he can paint for a few weeks. You give me hope! Ellen

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. Ellen

Thanks, Dean. As one of the newcomers, I am especially comforted...and will try to pass some of this one to a very stubborn husband.... Ellen

My brother in law, who died of lung cancer (complicated by a long-term heart condition) 9 years ago, was a WWII veteran - fought in Okinawa - and was one of the most important influences in my husband's life -- their father had died when my husband was 2 and Irv, his brother, 14, so Irv loomed large in every possible way in Len's life. Naturally, the first thing Len thought of when he, too, was diagnosed with lc was his brother whom he misses every single day. And with the dedication of the new memorial in D.C., he thought of him especially hard yesterday. But some of the remembrance is helpful: last weekend, when our daughter and her two boys were here, our oldest grandson, 11, asked Grandpa for help with a school report. He's doing a paper on the battle of Okinawa and was given permission by his teacher to ask for anecdotes from Grandpa about Uncle Irv's experiences on top of the three books he's using as sources. So the two of them spent hours talking about the battle and what Irv had told Len about it -- a sort of memorial day in itself! Hope everyone has a pleasant a memorial day as this! Ellen

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? Ellen

Dear Donna, Wanted to add my welcomes to the others. I too am a newcomer; my husband was diagnosed in mid April and had his upper right lobe removed at the end of that month. We're still waiting to find exactly what his treatment will be- he'll have chemo but they're doing a PET scan first (he couldn't stick out the first one they gave him because of his acute claustrophia, so they went ahead and operated on him anyway and found one lymph node affected); he'll have another PET scan on June 10th, this time with lots of sedation, and we meet with the oncologist to discuss what's ahead on the 14th. You're fortunate in that you're already on that course. I do hope you get good news on the 9th. Please keep us informed of your progress and your research. It's so much better DOING something than just sitting around and worrying, as we've been tending to do... Ellen

My husband was operated upon (upper right lobe removed) on April 26 and is still feeling a great deal of pain/discomfort on the right front side of his diaphragm, directly under his lung (or at least I think it's directly under his lung). This came as a surprise to us -- we had expected pain at the incision spot and in the lung, and of course were not disappointed in that, but that disappeared fairly quickly. At first we thought this discomfort, which was accompanied by a hardness in the diaphragm, was caused by the usual post-op constipation, but our surgeon disabused us of that notion. He told us about the nerve pain to be expected and also said that it would, eventually, go away. We're still waiting -- but then it's only a month, so I guess we can't complain too much. Len takes percocet occasionally, when he's really feeling the pain, but has been managing on extra strength tylenol for most of the time, using tylenol pm at night. It seems to be getting a tiny bit better but there's a long way to gok. In the meantime, we're waiting and waiting. He's to have a PET scan on the 10th of June, then we meet with the oncologist to discuss treatment. I think the waiting is among the worst of it all. If only we knew what to expect.... And, of course, I worry. I know the PET scan has to be scheduled after there's been time for some of the surgically induced spots to settle down, for fear of all sorts of misleading "hot spots". But I worry about delaying the chemo, which was unanimously recommended by the "tumour board" at the hospital. As far as we know, only one lymph node tested positive, but since we never had a complete PET scan before (Len panicked in the middle of his -- he's claustrophobic) we don't know for sure what else is lurking out there. Not much I can do, but I wondered if other people had been through this same "hurry up and wait" process. Ellen

Thank you all for your replies. I was feeling REALLY guilty that I had "complained" in my initial post -- I didn't really mean to but just needed to get some of it off of my chest. I will try to get Len to talk more about what he's feeling -- I know how scared he is (and me too) and how angry he is - both at the disease itself and at himself for not having stopped smoking years ago. I'm trying to persuade him to talk to the doctor about medication for anxiety - nights are quite difficult for him-- but he's nothing if not stubborn. I'm wondering if I should just go over his head and talk to the doctor myself? I'm also trying to be optimistic for the both of him -- he tends to be a pessimist at the best of times, and this, obviously, is NOT the best of times. Your stories give me hope that there is still good life to be lived. Ellen

I've been wandering around the internet, looking at different sites, and found this through the good offices of Dave G on the American Cancer Society's website. My husband, Len, was diagnosed with squamous cell carcinoma about a month ago, operated upon three weeks ago, at which point they discovered that one of his lymph nodes was also involved. He had not had a PET scan because he discovered, halfway through it, that he was severely claustrophobic and couldn't go through with it at that point. They planned to schedule another one, this time with sedative, but the surgeon decided to go ahead with surgery (he had done a bronchoscopy as well as CT scans and xrays) right then and there. Len came through the surgery fairly well, with only a minor lapse or two (one period on a ventilator when he went into respiratory distress and a later time when his heart rate and blood pressure began sky rocketing--a cardiologist took care of the latter with drugs and he took out the ventilator himself and ended up breathing fine without it). He is in considerable discomfort, not at the incision but below the lung with shooting pains from time to time and general feelings of bloatedness/discomfort, not outright pain. I gather from Dave, and several others, that this is common. The surgeon also said that it was to be expected and would go away. He will be taking a PET scan on June 10 and then we're meeting with an oncologist to get started on chemo. All of this is pretty overwhelming, and he's somewhat depressed -- and having anxiety attacks at night. He's usually pretty active but this has knocked the stuffings out of him. I'm trying to encourage him to do whatever he can - getting him outside in this beautiful weather, taking little walks around, fetching and carrying for himself rather than having me get things for him (makes me feel like a fink but I THINK it's probabloy good for him to be as active as he can be, as long as he rests afterwards). His temper is also on the short side and I find myself getting impatient with him== which I shouldn't be, but somehow can't help it. I know that this will pass as he recovers from the surgery but have no idea of what to expect from the chemo. Just needed to get some of this off my chest. I'd love to know how other people are coping. I'm trying to have SOME sort of life of my own in the midst of this -- I work part time (out of the house mostly,as a consultant, but I do have to travel to see clients and that's been on hold for awhile), so I'll need to make arrangements of some sort there; I'm a (very bad) amateur cellist and play in a local string ensemble and with a trio as well; that I find emotionally necessary; the rest of my life is basically on hold (my house is deteriorating around me, the garden is a mess although I DID get the lawnmower started for the first time this spring and did the lawn)..... Ellen