LexieCat

All over, feeling great. Doc says I can go home whenever I'm up to it. Since I live alone, thinking maybe first thing tomorrow. Worst part so far has been sore scratchy throat from breathing tube. Nodule was cancerous but won't know type or stage till pathology results back next week. Thanks all for good wishes!

You can DO this. You're still dealing with the shock of a recent diagnosis. As things become clearer (and apparently with this stuff it never becomes TOTALLY clear), you will adapt to a "new normal." I was the support person/caregiver to partners with liver disease and with testicular cancer. I did a lot of research and reading so I knew what would help them and what questions to ask the doctors. I also connected with communities like this one to talk with other people dealing with the same stuff. All of that made me feel like I had a modicum of control--not over the disease, but over what I WAS able to control. In talking with other caregivers and survivors I learned what is and isn't helpful (both for you and for the person you're caring for), remembering that everyone is also a little bit different in what they need/want. Some of my own tips, based on my own experience: Get organized--make up file folders (physical, and/or on your computer) to hold copies of lab/test results, reports, etc. Take good notes at meetings with doctors, and if you can't remember something, call back. Make sure your wife has the appropriate consents and advance directives on file (you can find something for your state online), to ensure you have access to all her medical info and to ensure the doctors are free to talk with you. You might also want to have her execute a Power of Attorney that would allow you to manage any of her affairs if she is unable to keep up with it for a while. (I'm a lawyer, myself, and there are forms online, but hiring a lawyer is the best way to make sure everything is done right). Keep a current list of contact info for all medical professionals helping your wife, a list of all prescribed medications, and a running narrative of what happens at each appointment or test. You'd be surprised how handy it can come in to have that info available at all times. I keep my folders with all my important medical info in a DropBox folder--that way I can access it from my phone if I don't have my physical folder with me. Read up on treatment protocols, options, considerations that may be applicable to her diagnosis. You can help plan/prepare good, nutritious meals that will promote her health and overall well-being. You can find out what side effects her treatment might have and prepare to help minimize some of it or make her more comfortable. I know what you mean about its feeling surreal that the rest of the world goes on. Actually, though, that's how it should be. The world doesn't stop for us and our problems or our grief. Be patient with yourself, and as much as you can try to be patient with others (my own patience has been stretched a bit thin the last few days). All of this will help you be the most effective caregiver/advocate that you can to help Dawn during her fight. And yes to what Tom said--you can lead the cavalry!

Hi, and welcome! I'm pretty new here, myself--surgery scheduled for tomorrow morning, so until then I'm not even sure what type of cancer/stage I have--so I don't have a whole lot of info to share, but there are some very experienced, smart, and friendly folks who will be along in a bit. Feel free to post any details you want about your diagnosis, treatment, how you're feeling, etc. Teri

Talked to the hospital last night--I am in the very first surgical slot Monday. I'm at the hospital by 6 am, surgery scheduled for 7:30, and apparently the OR is reserved only till 10, so I was kidding my colleagues I might be JUST a tad late for our weekly online staff meeting at 11--probably just a bit more entertaining than usual. A couple of months ago one of my colleagues was sitting in on an online interview, for someone we were thinking of hiring, while she was still on pain meds for back surgery. She forgot to mute herself, and started babbling all kinds of stuff about the interview process to someone who'd come into her room. We had to disconnect her and re-start the web meeting without her. Actually, the guy being interviewed got props (and the job!) for picking right back up when we reconvened. Just taking care of a few personal details this weekend, finishing up a couple things needed for work--staying busy to keep myself distracted. I HATE waiting for stuff to happen. Trying to keep an open, flexible mind that is hopeful it will turn out to be stage 1a at the most, but prepared to deal with other possibilities. I'm trying not to get too carried away with the what-ifs--I've taken care of what I can, and the rest is out of my hands, at least until I know exactly what we are dealing with. I've noticed I feel WAY less patient the past week or so with stuff (and people) that I find annoying. I normally have a pretty long fuse but it's been shortened a bit, especially the past few days. Would appreciate any good thoughts/vibes anyone up that early can send in the general direction of the Philadelphia metro area!

YAY! Well, let's hope Monday brings good news for us both!

I've had to be the support person for a loved one with a serious medical condition several times, and what you're saying is exactly right. On an airplane, they always tell people to put on their own oxygen masks before trying to help someone else--and that is very true in these situations. And although it will help her to know how much she is loved, it won't help her to see you all freaked out. So yes, take good care of you. Not a thing selfish about that--seriously.

I know what you mean--I've been pumping myself up and staying busy and positive and all that the past couple of weeks. My surgery is Monday, and yesterday I started feeling what I've come to identify as anxiety. Shallow, constricted breathing, mainly. It's not true shortness of breath, because when I am really concentrating on something else, I breathe normally. I've been trying to do some of the yoga breathing I've learned, but I'm out of practice. Uncertainty with something like this is hard to deal with. I always feel like if I KNOW what's going on, I can deal with it. I gotta hand it to folks like Tom and others here who have been dealing with various levels of uncertainty for years and years. Sounds like you never REALLY get used to it, though people do find ways to cope with it. One thing that helped me this past week or so was taking care of a bunch of stuff I'd been putting off, just knowing that I'd feel better coming home from the hospital, whether with good news or less-good news, if I got it done. And it really has kept me distracted, and given me fewer things to worry about. Clearing the decks, so to speak. If you've got some stuff you've been meaning to get done, now's not a bad time to tackle them.

Well, that's good news--persistence pays off. I can tell you once I saw my pulmonologist, it took only a few days to see the surgeon for the consult and get the PET scan (and same day results). This way you get the ball rolling sooner rather than later.

My hospital provides a "care pages" website that I can invite people to. I post updates as needed and folks can check in there. Immediate family, though, is a bit tricky. I've chosen not to tell my 88 y/o dad (in assisted living) about any of this because his hearing loss and short-term memory loss means he would be unable to remember from one call to the next what's going on, and he would worry about this quite literally for the rest of his life, even if the news after surgery is all good. Do you have a close friend or family member who can run interference for you? I have an elderly aunt I'm very close to, and I'm having my cousin (her daughter) update her mom while editing for content, so to speak. Basically keeping the news positive. The other person I've put in charge of relaying info is my ex-husband, who is a little more removed from the situation and good at dealing with people. Another option would be to talk with the hospital social worker, who might be able to make some suggestions for how to deal with those well-meaning family members who want to second-guess everything.

With an attitude like that, how can Dawn not feel encouraged? And that's terrific that you are bringing her some better clothes to come home in. Right before my nodules were found, I indulged in some heavy retail therapy to celebrate a significant (non-health-related--I WORKED for every half pound that came off) weight loss, and I think having some nice clothes to wear is a real boost. I love my comfy laying-about clothes, too, but nice to have something that fits and looks good on me. I hope she gets a good treatment plan going--I always feel better when there's a plan and a path forward. Keep us posted!

Well, don't go heaping guilt on yourself. Neither one of you could have prevented your wife's cancer. I'm very new to this myself (surgery next week), so I can't give you any helpful cancer-related information or advice. I CAN tell you, though, that if you want to be there for your wife, it's critical for you to take good care of yourself, too. Make sure you stay on top of your work with your therapist and do whatever is recommended to maintain your own stability. There are so many advances in cancer treatment she could be around for a long time to come. Sending support and hugs.

Thank you ! I'm familiar with a spirometer--I had a partner once who needed to use one after heart surgery. I have a recliner, but the downside for that is that I also have cats--who WILL be all over me if I try to sleep in it. I can close the door in the bedroom, so I think all things considered I will stick with the bed. The wedge pillow I got seems to provide a lot of support--it's a memory foam/gel, and pretty firm. And yes--I remember the pillow-hug for coughing from my abdominal surgeries. Did you find that the primary pain is from the incisions? I'm assuming there's not a whole lot of pain where the lobe is cut out. I'm ecstatic that VATS is possible. I really didn't like the descriptions of the full incision surgery, with rib-spreading and all. I've had a cracked rib before--NOT pleasant.

Now THAT is encouraging! And so is your followup--you've been kicking around for a while, now. Do you continue to have scans or x-rays periodically? How often? My nodule is just about 1 cm, so I'm hoping for 1a. Nothing else has lit up on the PET scan, other than the one nodule. I'd love to avoid the chemo, but will have to wait and see. At least I'm keeping busy this week.

Thanks, appreciate it. I think I'm pretty well fixed in the grocery department. I have lots of good, easy, microwaveable stuff. I just found the VATS sheet from the hospital, and it says there "shouldn't" be any dressing changes necessary. That's assuming, of course, that the chest tube comes out, I'd guess. I've gotten most of my housework done this long weekend and can finish up the rest this week. I know I'll feel better if I can come home to a clean place (world's most lackadaisical housekeeper here). LOL, living alone has the advantage of requiring cleanup of only my OWN messes, but the disadvantage of the temptation to let a lot of the routine things slide.

Oh, trust me, I TOTALLY get that. All *I* know is that my nodule is "probably" cancer--I won't know anything for sure until surgery on Monday. So I'm sort of trying to get the most useful info I can without getting ahead of myself. I know right now it looks encouraging--it doesn't APPEAR from the PET scan that there has been any spread, but I won't know what I'm even dealing with until Monday. So I'm trying not to get too far into the weeds on scarier scenarios that I may never have to contend with. That's a sure-fire recipe for freaking myself out for no reason. Hang in there--remember, at this point anything that's there is SMALL.

I have TONS of small pillows, so getting comfortable/supported should be no problem. And glad to hear the dressing changes aren't likely to be too terribly frequent--if it's every other day or so, shouldn't be too difficult to manage finding someone to do it. I'm pretty sure my insurance would cover nursing visits to check on that sort of thing--just left a message for the Nurse Navigator to find out. I have friends who would be willing, but they aren't that close by. I'll figure it out. It also just occurred to me that I should probably color my hair before I go in--normally I'd wait another week or so before doing it, but I imagine it's going to be painful holding that one arm up in the awkward positions for a while. And I remember with the abdominal surgeries having to be careful about getting up/out of bed. And yes--one and done is the plan.

Actually, there are some great caregiver resources here: https://www.lungevity.org/for-patients-caregivers/caregiver-resource-center

Hi, Terri, Welcome, and I'm so sorry to hear about your mom. I'm brand new to this, myself (surgery next week), so I'm afraid I don't have any helpful advice or information for you, but there will be folks along in a bit who can be more helpful. Just wanted to send you some hugs and support. I lost my mom 30 years ago (to a different type of cancer) and it's a very helpless feeling to be dealing with something like that. On a personal note, as well as getting the best care that you can for your mom, remember to take good care of yourself, too. Find out from the hospital whether there are any groups for caregiver support--cancer is hard on everyone in the family.

Do you know how often that typically has to be done? Once a day, or more often?

Great--good luck, and do keep us posted. Try not to worry. I was in the screening because I WAS a longtime smoker. Anyone can get lung cancer--not just smokers--but if your nodules are just the "thingamajigs" most of these are, you might have been blissfully unaware of them for the rest of your life. But knowing they ARE there, it's possible to keep an eye on them and if it does turn out to be a baddie, you will be on top of it before it has a chance to make itself at home.

I have VATS scheduled for next Monday--probable lobectomy (if the nodule is cancerous). Anyone have any great tips for the hospital/recovery? Bridget suggested getting a wedge pillow, which I already received and tested out--it's great and I can see how useful it would be for maintaining a good position during sleep. I also got a locking mesh bag for my iPad, phone, etc. Last time I gave birth and was in for a couple of days following a C-section, my wallet was stolen (yeah, I'm a prosecutor, should have known better) and credit cards run up. Lesson learned--don't leave anything valuable unsecured in your room, even briefly. I've had three major abdominal surgeries in my life (counting the C-section) and I generally heal quickly, tolerate pain OK, and am anxious to get home as soon as is reasonable/safe to do so. My surgeon predicts that (barring complications) it will be 2-3 days max. I took today off so I'd be able to do some cleaning and laundry and stuff so I will come home to a clean house and not have to do anything but recover. I live alone but have terrific, dependable neighbors at home all day, who will run errands or do anything I need help with. The surgery will be on my left side, which at least means my dominant side won't be compromised. I am fortunate, too, to work from home, and my job will accommodate a flexible schedule as long as I need it--I can work for a couple of hours as I feel up to it and then rest/take a nap. So, is there anything anyone found particularly helpful or that you wish you had known/done before surgery?

I'm so sorry for all the complications there, Jeff, Sending good vibes and encouragement. Thanks so much for your service.

I'm having a lobectomy next week, and I travel for my job--no trips planned till September, but my doctor says it should be no problem at all. If you're feeling good, I can't imagine that you aren't fit for travel after a year.

Hi, Heather! I'm no expert because I'm fairly new to this myself, but I have several nodules they were following as a result of cancer screening I was participating in. This last time one of the nodules had grown SLIGHTLY and so I am scheduled for surgery--the PET scan is suspicious as well, but it's small and nothing else lit up on the PET so I'm hopeful if it is cancer, we will knock that sucker out. What I did learn is that there can be many, many causes of nodules, most of which are harmless (scar tissue from an infection, for instance). If this is your first CT scan, there's a good likelihood they are just sitting there doing no harm. If it DOES get bigger, or if there were NO nodules on a previous scan, there's a bit more reason to be concerned but nothing to panic over as long as they keep an eye on them. I have zero symptoms and all four of the nodules (the troublesome one and the other three) I have are larger than yours. I doubt that nodules that small would cause a cough, unless they were in some weird location. Certainly follow up with your doctor, but from what I read, these are very common and most often not cancer.

HI, Rick, I see you started your own thread! I'm sure someone(s) with helpful info for you will be along soon. And I, too, would be interested to know how that could be considered "stable." I have a few lung nodules, which were observed over a year ago, stable on a three-month re-scan, and then on the last screening scan one had increased 2-3 mm since last year. I have surgery scheduled a week from Monday. The other nodules I have are still considered "stable" but that's because there's something to compare them to.