Just arrived

[close to the edge]

Hello , since 12/1/03 i have been thru a battery of tests. they found a lung mass in my left lower lobe. they did a broncoscopy but couldnt get ahold of a piece of it so its not officially cancer however on all the other tests it lights up like a litebulb so chances are it is.....i am scheduled for a lobectomy ( i think thats what its called) on 2/9/04 i'm sure its cancer. but they say its the early stages so my out look is good.

never the less I'm still terrafied. i joined this site to talk with other people who have been down the same road. i just know this is going to be so painfull. from all i've read it sounds like a really rough surgery. i am dreding it. can anyone discribe what it will be like? could anyone suggest any tips to make any part of this go a little easier? i would appreciate any help at all. many thanks in advance

[Snowflake]

Tips to make it go easier - (it's as easy as A-B-C)

Ask for the drugs when it hurts!

Be nice to the nurses, they are your link to drugs....and baths...and visitors

Call your General Practitioner and see about anti-anxiety medication or sleeping pills - you need to sleep BEFORE the surgery

Don't jump to cancer conclusions until you know for sure

Exercises - breathing exercises after surgery

Find a person to be your advocate, to go to all appointments and take notes

Get acquainted with your spiritual side, you'll be visiting

Help your doctor help you, follow all instructions and ask questions if you aren't clear

Ignore cancer statistics - they're outdated and dismal

Just try to relax

Kid around

Laugh - it feels better to hurt when you're laughing than to just hurt

Make the most of every day

Never give up

Obtain what you need to get you through (mentally/emotionally/physically)

Promise yourself you'll get better

Quit procrastinating

Rely on others - healing takes some time

Strength - you have it, find out how to get to it

Take time to notice the little things

Understand you won't be back to 100% a week after the surgery

Value the talent your doctors have, but seek others if you aren't happy

Waiting is the hardest part

Xrays for the rest of your life (or so it seems)

You CAN do it

Zen - that inner peace, again...

(Wow, sometimes I even amaze myself...)

Seriously, though, it hurts. One of the most painful surgeries there is, no doubt. Take the medication in the hospital, you are NOT a wimp if you need pain medication. Be nice to the nurses, they control the "temperature" of your stay - "please" and "thank you" go a long way. If you are getting bad care (i.e. a blood draw where they can't reach a darn vein) ask for someone else. Deep breathing and relaxation techniques help. Don't expect to sleep comfortable on your "normal side" anytime soon. Laughing hurts, coughing hurts, sneezing is a real bit*h...but laugh when you can, humor helps. Blood coming from anywhere is bad - let someone know immediately.

Best of everything to you, may you just have an infection...

Becky

[shirleyb]

It is hard being so scared of the unknown.

This is one of the best places to find out information. Ask what questions you need to ask, someone invariably has an answer.

Keep the faith.

Prayers going out to wish you the best.

shirley

[DeanCarl]

What Becky said ... and then some!

Remember, a LOT of folks here have had that surgery and have come through ok. So will you. Listen to what they have to say.

For now here's a thought. Today is the 21st of January. Your surgery isn't until the 9th of February. If I counted on my fingers right that's 19 days (had to take my shoes off for that one! ). Now the question is ... how are you going to spend those 19 days? You don't have to spend ALL that time worrying about the surgery. You can take a "vacation" from worry if you want. Decide to focus on something else, something nice, for awhile. Tell yourself you're going to do that for an hour. Now, everytime your mind heads off into the "worry cave" stop yourself and refocus on whatever nice thing you decided to think about instead. It takes a bit of effort at first, but just like a "real" vacation you come out of that hour more refreshed, more relaxed, and more able to deal with whatever it is you have to deal with.

And, for goodness sakes, let us know how you are doing both before and after the surgery!

Dean

[karen335]

Hi There,

Please listen to what Becky and Dean have written to you. I know it is hard, but we are all here for you and there is a lot of support here. I haven't experienced surgery, but I am sure there will be quite a bit of response to your question. Praying for your successful surgery and quick healing...

God Bless

Karen

P.S. Becky. that was awsome... Amazing explanation.

[MurielK]

This is a really scary thing to do! It isn't as bad as you probably are imagining it will be. You might want to talk to your primary care doctor or your surgeon about meds. for anxiety and for depression. I found them helpful at times.

Obviously, this surgery is serious and has some risks. I found a couple sites on the internet that were very helpful and, right now, I can't locate them (Thought I added them to "my favorites" but I can't find them. So, do an internet search on lung cancer. I had my surgery at the end of June and feel fine now. In fact, I felt pretty good by mid-Sept. I felt that I recovered much faster and had less pain than when I had a total knee replacement in 1999.

The pain meds in the hospital were wonderful. I was uncomfortable at times, but I don't think I was ever in a lot of pain. The Dr. sent me home w/ a prescription for vicodin ES (that's extra strength!) and it worked beautifully. Unfortunately, you sleep a lot with it!

Good luck. Be sure to ask lots of questions of your doctor, nurse, etc. and on this message board. There aren't any foolish or silly questions when it comes to your health care.

Muriel

[Nancy B]

Hi There, I can really appreciate what you are saying and feeling. I was diagnosed by means of a needle biopsy in December 2000 and had an upper left lobectomy on February 10, 2000. I was staged 1B as my tumor was quite large (size of a tennis ball) but it was all contained in the lobe and they were able to remove it. Just don't be afraid to ask questions and as someone else said, take someone with you to appointments to take notes. Make a list of questions before you go. The surgery is painful but certainly doable. I was told to always take the pain meds before the pain hit - I did and it worked. I was off the meds in about 2 weeks and back to work (a desk job) after 3 weeks. My prayers will be with you. Please keep in touch.

Nancy B

[Tiny]

Here are some ideas gleaned from my own experiences and those of others on the Board who have shared. Use all, some, or none.

• Don't be bashful about the pain medication. Pain interferes with the healing process. The trick is to take them before the pain starts, and then you are able to function.

• Get an epidural in your spine to help with immediate pain in the hospital, plus morphine, Demerol, or similar. I came home with Percocet. Take the pain medications regularly at first, and then wean yourself off as able. I kept a log so as not to “play games” with myself. (I was off all pain medications 3 weeks after surgery, but many people need MUCH longer. You and the doc will know.)

• When you first come out of surgery, it might be a little disconcerting because of all the things you will be hooked up to: an epidural catheter, a bladder catheter, an IV, chest tubes, EKG-wires, oxygen, perhaps a respirator, etc. It’s normal, and will be gone soon.

• The narcotics have a tendency to be constipating, so be aware and eat your fruits, veggies, and drink, drink, drink lots of water. Sometimes stool softeners or fiber/bulk laxatives such as Citrucel may be helpful. Someone else said that a home health-care nurse had an idea that really helped her. The nurse recommended drinking a small glass of prune juice each day and advised warming it in the microwave oven first.

• A heating pad helps afterwards with the pain when you are home; just use it judiciously.

• Lots of naps are permitted and encouraged during the day …healing occurs faster when you are truly resting.

• Get a pillow, or soft Teddy Bear, or something to hold against your incision when you cough or are riding in a car and you hit a pothole.

• Someone recommend anything by Bernie Siegel. All of his books are on tape, and he has several meditation tapes.

• Take a cheap calling card to the hospital.

• Someone’s cool suggestion (I didn’t have this procedure myself, but it sounds GOOD): Ask if this surgeon is trained to remove the lobe by VAT (video-assisted thorocotomy) If the tumor is surrounded by good tissue , you have never had radiation to the chest or chemo , you may qualify for this instead of the old way of making a big smiley incision over your back, and breaking a couple of ribs, etc. ( that is why a numbing epidural is so wonderful). The VAT procedure only involves making a couple of small incisions, and using a scope to remove the lobe of lung; there is much less scar, much less post pain, and quicker recovery. More and more doctors are being trained to do this newer procedure.

• Use the Spirometer religiously every hour that you are awake!!! I totally loathed the thing—I only had to LOOK at it and I would start coughing, but I persevered. I also charted the times I used it and what my progress was, and feel it played an important part in my relatively quick recovery.

• Exercise and walk, walk, walk, as soon as you are able. Right from the beginning, Fay A. recommends moving your feet and lower legs as if peddling an imaginary bicycle while in bed or seated for extended periods of time. This will help with circulation. Take those mini-walks several times a day. When you are stronger and steadier, begin taking longer walks. I charted my times and distances (i.e. like a whole block instead of 1/2 block J) and set goals for improvement. Someone else found an exercise program on the net for lung cancer patients that you might like to check out www.cancernetwork.com. They said the exercises helped a lot. I had my own routine of light stretches and light toning that I did.

• Soft, loose clothing will be the ticket. I wore NO underwear of any kind for a couple of weeks. Soft shirts such as fleece that open down the front are nice. My pants were knit shorts or flannel pajama bottoms with elastic waists.

• It seemed surprisingly chilly without a bra. When I finally decided I would try one again, I found I could not tolerate underwire bras of any kind. I found some Sports bras at Target that zip up the front, which makes them easy to get into.

• Someone gave me a long-handled loofa, which turned out to be a prized gift, because it allowed me to be much more independent in the shower. I could do my back and legs and feet by myself using the loofa. Fay A. says to buy an extra one and reserve the dry scrubber to scratch the incision when the site starts to heal and itch. At first, you may need some assistance in shampooing your hair--I did, or getting in or out of the shower or bathtub.

• As per Fay A. again: Many of us who have had surgery end up with Gastric Reflux problems, even if those problems did not exist prior to the thoracotomy. It can be pretty painful, and if the acid splashes high enough can actually reach the area where the trachea meets the esophagus, causing cough and other respiratory problems. Have the problems treated if it occurs.

• Fay A. again: Try to have the place where you will be resting the most set up so that the lamp, table, etc, are opposite the surgery side. You will be limited in how high you can lift the arm on that side for a while.

• Fay A.: You may need smaller, more frequent meals.

• www.cancerlineuk.net. Click Lung Cancer...Click Patient Support. There's an article on going home after surgery. It is quite informative.

• Someone else suggested getting a set of good walkie talkies. That way the patient never felt like he was left "alone". He could always reach the other person in just a click of the button and saved them a lot of unneeded stress.

• When you get home from the hospital after surgery, it might be helpful if someone can help you get up and down. Those muscles that get cut are the ones you use to lift yourself, and they are really sore for a while. I found it worked best for me to sit in a firm chair, such as a dining room chair, rather than the soft, enveloping daveno.

• Some people sleep on the couch or in the recliner for the first week after returning home. It can be easier to breathe if your head is slightly elevated. Myself, I had a hospital bed right in the middle of the living room for a couple of weeks.

• Also after Early Stage surgery, it has been recommended that you do get adjuvant chemotherapy because of the significant number of people with micro metastases that the pathologist is unable to identify this early. There is still some controversy regarding this recommendation. Do your research; talk to your follow-up lung-cancer provider; get a second or even third opinion.

Hope some of these ideas are helpful.

Best of luck to you. So delighted you are Early Stage!

[Marie]

Hi, All the others have given you excellent advice. Remember, you'll be asleep through the bad part. It is very doable. Just remember to take your pain meds and you'll be fine. Where are you having your surgery?

[ginnyde]

I want to emphasize the PILLOW OR TEDDY BEAR. Hold this against your incision when coughing, riding in the car etc. My husband become very attached to his pillow.

My husband had his surgery at Fox Chase with Dr. Melvyn Goldberg. We were very happy with the care there.

Good luck.

Ginny

[Snowflake]

Oops, I forgot the teddy! My GP (the goddess that caught this thing by chance) sent me a vase of flowers with a big white teddy bear... He became my cough buddy and a traveling mascot when I flew to Houston to go to MD Anderson... Trip would have been a complete waste of time, had I not met up with an old friend and her husband and had a wonderful time laughing and enjoying life...and I happened to travel on my company's jet through the Angel Network and a few of the guys I used to work with were heading to Freeport and had hugs and candy for me... What can I say, I make an impression on people! (...and people really made an impression on me when I felt I had been kicked by life, I found out that I have close to a zillion true friends - how wonderful is THAT?)

Take care, don't build it up too much in your head. Healing hurts, granted, but you DO sleep through the worst part! (I found out I was having surgery about ten hours before I was to report to the hospital - I knew I was on a "waiting list" and that it needed to be out by the end of the next week, but beyond that, was stressing over WHEN. Glad you have an appointment!)

...and hey, scared the hell out my husband beginning with the discovery of "something" right down until today. He thought he had it beat by marrying a "young thang" - good thing he didn't opt for the money-back warranty! LOL

You'll do fine, time in Club Med...people waiting on you hand and foot, bathing you...oh yeah, the life of luxury...

Becky

[close to the edge]

Thank you all so much

i can not tell you how much all of your advice is helping my spirit

I do have a count down and i am doing alot of preperation & spending time with the people i love - trying to get my support network of people organized - funny how when something like this happens friends come out of the woodwork to help - You have all added to my shopping list - I have also begun to start my day with meditation & yoga as well as a daily walk - this has helped my spirit & energy tremendously!!!! I will take all of your advice. I tryed to post a photo of myself to put a face to the name but the file is to large i will try to take a photo at a lower resolution. I am so glad i found this site - it is encouraging to meet people who have been down this same path and understand compleatly how i feel.

Luv & light

Ann

[mhutch1366]

Close to the edge,

The one element I found missing from this list is prayer. I used to say one prayer over and over and over again, left me no room to be flipped out. Helped me sleep. Helped me cope.

You don't have to be religious to find a quiet place in your heart/head/soul, and some thing meaningful to say repetitively to get you to that place... it's a life saver when you're tired, or weary, or angry, or scared....

Pick up a few nice things to take with you to the hospital. For example: a box of special herb tea that smells wonderful. A nice (plastic) mug for tea or coffee. I had an evening tea ritual with one of the nurses at about 8 pm. (I was in for 3 weeks). A new night shirt ( after the first couple days, you'll be able to shuck the hospital gowns..) and maybe a new bathrobe and cool slippers for your little dance up and down the hall (gotta keep moving, chase the pneumonia away). An inspirational post card or photo. A lap robe or small blanket, makes the room much more cheerful. Chapstick or something like that, and lotion that you love, that smells good. I never wore scent, but a friend gave me a small spray bottle, and a spritz on a kleenex tucked in my sheets made me feel better.

It's all about attitude. It isn't an easy ride, by any means, and it will take grit and determination on your part, but you reach down deep inside yourself, and muster your resources, and deal with it. The rest of this advice is just tools to help you make it happen.

Meanwhile, I'd advise immersing yourself in good books, good rented flicks, good food ( I had steak every day for lunch while I waited..) as nutritional status going in is important. I also was hiking a bit before surgery, so I was in pretty good muscle tone. All this helped me heal quicker, and it still was a battle. But... it's worth it to be here years later to compare notes, or help someone else....even just to witch!! out loud.

You're in our prayers,

MaryAnn

[dbernard]

close to the edge,

i see you are from media pa, i am from the phila area. my mom had lung cancer. at what hospital will you have surgery?

I will say prayers for successful surgery and a speedy recovery.

[EileenM]

Close to the edge

Sorry you are facing surgery. This is a wonderful site to find answers, kindness, comfort, laughter and to ask questions.

If your doctor will agree -- have a prescription for pain medication filled before you go in for your surgery so it is at home waiting for you. I was prescribed Dilaudid and it really helped alot.

Everyone gave such great advice - I think they covered just about everything.

Do you know if you are going to have VATS - Video Assisted Thoracic Surgery done? I had VATS done in July 2003 (upper right lobectomy). From what I have been told - VATS is easier to go through and a quicker recovery time.

It will be 6 months tomorrow, Jan. 23rd, since I had my surgery and I feel pretty good - just have a little discomfort on the right side. I went back to the gym 2 weeks ago and began to lift light weights three days a week and 2 days a week I do Stairmaster & one of the other machines for an hour.

Read read read any and all information you can get your hands on. Also, ask questions - be informed.

Wishing you the best.

EileenM

[David P]

Hi Ann, and welcome to the message board.

I'm sitting here just shaking my head at the amount of awesome advice being given out. Your reaction to it takes me right back to the day I found this site almost a year and a half ago; after reading posts for a few days, and finaly posting myself, I felt as if I had known everyone on the board for a long time. Going into surgery with this kind of first hand support has to be a comforting feeling. Remembering back to my surgery I recall that one of the things that got me through the post surgical stage was knowing when to ask for my next shot of morphine. If I left it up to the hospital staff they wouldn't get it to me before the last shot wore off, so there would always be a window of pain before the next shot. It takes a few times to figure out how long each shot lasts at the start. But hey, maybe they don't have that problem anymore with new drugs and stuff. Take care Ann, and have a GREAT surgery!!

David P.

[Remembering Dave]

So Sorry you are here but as you can see, you could not have found a better sight for you situation. Keep positive and stay away from the statistics. My prayers will be with you.

David C