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Shirl

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Hi Everyone

I have been lurking for about a week now and I must say I find all your stories of hope and your amazing courage in the face of the dreaded C very uplifting and encouraging.

I am recovering from a lobectomy of the lower left lung which I had 7 weeks ago as I was dx with NSCLC Stage 11B. I haven't been offered any chemo or radiotherapy so am keeping my fingers crossed that it hasn't spread anywhere else. I am having some problems since the op such as loss of voice, pain and discomfort in the trachea since the mediastinoscopy 2 weeks prior to the lobectomy which has left me unable to lie down flat to sleep. Also am finding it hard to breathe in and out deeply - I just want to keep coughing all the time, but I suppose these symptoms will pass in time.

I am so glad to have found this site, support groups like this one are few and far between in the UK.

Would like to end by saying thanks to all of you for letting me become your friend.

Kind thoughts and love across the miles to you all.

Shirl (UK)

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hi shirl,

hello from the u.s. and welcome to the site. i'm sorry to hear that you are dealing with side effects from the surgery. i hope that things improve real soon. please keep in touch and let us know how you are doing.

God bless,

mj

p.s. i love the u.k. by the way! such a beautiful place! :D

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Hi Shirl,

Hope you are feeling better very soon. Our dear friend Bob had a segmentectomy of his lung in February, and he had some of those same symptoms for awhile. His voice is much stronger again now, and he is doing better with his breathing and with the coughing as well. Praying for a quick end to these things for you. Welcome to our family.

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Hi Shirl, glad to have you as a friend.

It is a tough operation and takes a long time to heal. I would think each day would bring baby steps towards recovery.

Have you gotten a second opinion about chemo? There is a lot of discussion right now about the benefits of chemo for early staged patients.

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Hi, Shirl!

I had a lobectomy, no scope and couldn't lie flat for a very, VERY long time...in fact, my first month home from the hospital I slept on a reclining sofa with pillows propping me in a "less pain" position. When I made it back to my bed, I used a triangular wedge (bought at a medical supply store) and about four pillows to keep me at a 45 degree angle at least.

According to my doctor, coughing helps to "heal" - but it sure did hurt! I found that if I was going to be in that pain (the diaphragm issues) I'd rather laugh than sneeze or cough...so I watched comedies and laughed and hurt and laughed... The confusing part was that when I laughed, I had pain in my collar bone!

If you are coughing anything up, especially anything containing "color", you should be in contact with your surgeon.

It takes quite some time for things to heal. My surgery was February of '03 and the nerves STILL aren't "right". In the beginning, everything hurt/burned. Then nothing...then itching, awful, awful itching that I just couldn't scratch (scrambled nerve endings)...aches... Now I just get numb sensations, itchies... BUT, I'm not really complaining, the pain isn't what it was right after surgery...

Hang in there, you're doing okay... If your pain medication is now over the counter, stick to anti-inflammatories...

Welcome to the family,

Becky

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Hi Shirl,

I had a the lower left lobectomy in mid July and I'm still having lots of pain in the front. I always slept on my left side and I can't get used to sleeping on my right side.

I had Stage 1A NSCLC and my surgeon also chose to tell me I didn't need chemo but I am seriously considering it.

I asked if anyone in this group could offer me some help regarding the benefits of early stage lung cancer and chemo therapy. I got some wonderful advice!

Please check out the post titled Time Line in the Early staged forum.

Good luck and prayers heading your way

Kathy

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Hi and welcome, ....Yes, Im just recovering from surgery, left lung removed, so I know how you feel....its important that your Dr. controls your pain enuff, (with medications), that you can breathe and become more active, like walking and things. They had me taking short walks on the 3rd day after surgery, I think. Yes, its going to be painful to cough for awhile, but you have to clear your lungs by coughing. They gave me regular respiratory treatments, (breathing a vapor from a facemask) to help, are you getting that? Later, at home...I use an inhaler, albuterol...to help clear the lungs easier. The pain slowly eases a bit after some weeks, but just gotta hug a pillow or somethin when coughing for some time. Im about 8 weeks out from surgery, and the coughing is way down for a few weeks now, and not nearly so painful, hardly feel it much now.

Just hang in there, takes a lot of patience...recovery is sooo slow. Im still sleeping in my recliner chair....not ready to lie down yet, tho I think I could. The trick is to prop yourself up at 45% a;ngle, ...or enuff that youre prevented from rolling onto your painful side in sleep, I think. If you know you wont roll onto it in your sleep, give s you the confidence to sleep, I think.

K...hope this helps some....good luck to ya

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Hey there Shirl.

It's been quite some time since my surgery, but I still remember the coughing and associated pain, but both will slowly go away. As for breathing, don't expect it to improve much without a bit of effort. I'm a believer that you must look for ways to "work" your lung and a half back into better shape than they were before surgery. Go for walks and climb stairs -- gradually at first -- when you're out of breath, you naturally breath deeper. After a while your breathing will improve, and you can increase the effort with which you work your lung, which will increase your overall lung capacity. Becky, I still get sharp pains up in my left collar bone area, and I still have some numbness around my scar. Take care Shirl.

David P.

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Hi Shirl. Reading your post reminded me of the song they sing at one of the rides at Disney World----"It's a small world" You may be over the great pond, but right now you are inside my computer in Minnesota. Welcome to our family. Hope you continue your rehab , don't forget to do range of motion on the affected arm, and some good deep breaths intermittently through the day. Donna G

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Welcome, Shirl,

Were you given respiratory therapy after your surgery to show you how to keep the lungs clear and how to cough with the least amount of pain? Most of us used a small pillow to hold up against the incision when we coughed, or had to breathe deeply. Also, there is something called an incentive spirometer that I used to help to gauge how deeply I was breathing.

I did want to let you know that many of those I have met over the years who had left lung surgery have had an injury to the nerve that controls the vocal chord which results in loss of voice. Some of those had complete healing over time, but others required reconstructive surgery to regain their ability to speak above a whisper. Most of them held the attitude that losing their voice was preferable to losing their life, but it was nice to know that procedures existed to repair the damage done to the nerve. So don't give up hope of regaining your voice.

PS, I, too, love the UK. Had the pleasure of living in East Anglia for over 3 years.

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Hi New Friend Shirl:

Welcome to our humble family! I'm so sorry to hear your having some problems. Like David P, it's been a while for me too sense I had my surgery, BUT, I do remember having some of the same things you discribe. I will say, if you continue to cough a lot, I sure would call your Doctor and see what they can do about it. Did you use to cough a lot before surgery by any chance? Don't try and tough this one out. It's very important to stay on top of your pain and problems and always let your doctor know what is going on so they can keep an eye on you.

I hope you will stay with us here at LCSC and let us offer you support and love. We're pretty good at it! :wink:

I hope your feeling stronger as each day goes on. This is a SLOW recovery! Not one to PUSH!

Take care and Welcome!

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Welcome to our family. You've received a ton of "Happy Hellos" and a boatload of lc insights in very short order. You'll likely need some time yet to fully recover and to get your strength back. I also spent lots of time after my surgery propped up by a ton of pillows on the couch rather than the bed. If it works...do it. One thing I'd like to share is that I found during recouperating that I could lean onto my surgery side whenever I needed to cough. It worked for me every time. Then when I only felt like "wheezing for a while"....I'd lean towards the other side. Har De Har!!! Trust that you'll see the return of your sense of humor and much, much better days in the coming weeks.

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  • 2 weeks later...

Shirl,

It was months for me till I could stand to lie fat, It was so painful. Just slept in te recliner for a couple of weeks the really elevated msyself when I did get back in my bed. My hubby really helped me to get back on my feet. I hope you have help? I also walked every day to increase my lung capacity, not far, but made the effort. Do not be suprized if you have a plueral effusion from the treatment and trauma to that area. It is very common, have the doc check it out. Mine resolved own it's own after surgery. A year later, my cancer returned and caused a pericardial effusion as well. Don't want to scare you, that was me and not you. I then required emergency surgery, due to fluid build up around the heart.

Continue posting, and WELCOME!!!

Cheryl

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Unfortunately welcome to the club. I too slept in a recliner due to the problems laying flat. Have patience, it does get better.

I was one of the lucky ones to have problems with my voice as well. I was told that the nerves were damages to my left vocal cord and basically paralyzed it. The strength of my voice was a little above a whisper. The harder I tried to talk louder the worse my voice got.

Luckily the fix is pretty quick and easy if you have a similiar problem. I had collagen injected into the cord and this helped tons. My voice wasn't perfect but much better than it was. The procedure it self was under general anesthesia through a scope. No external wounds and done on an outpatient basis.

The injection is not a long term fix, many times I am told the nerve grows back on its own and your voice will return. Unfortunately for me, the injection is now gone and the nerve hasn't grown back on its own.

I am considering having a more permanent surgery that is more like a teflon injection and made through a small incision in your neck.

Time will tell where and if your voice returns on its own. As others have said, recovery is slow but you will recover.

Best of luck and keep us posted.

Wendy

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