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Mark C

Squamous Cell

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Mark, I’m at the same point in my journey as you. Diagnosed Feb 13th. The and ups and downs make it a crazy ride. I’m looking forward to more ups than downs. 

I’ve had all the test and will see a surgeon on Monday. Next visit with Dr for treatment plan is the 26th. 

All I can say is thank goodness we found this group!  I know this is helping us through this unwanted journey. 

We've got this!

Paula 

 

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It IS a crazy ride. I would imagine when things get going, they will move faster. Keep us all posted on your journey and I will do the same!

And again, a BIG thank you to all of those who are helping everyone through these rough times.

Mark

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I got a surgery date! 04/03/18. My surgeon thinks they will have to do a pneumonectomy instead of lobectomy due to the location of my tumor  

It's right in the middle. He won't know until they put the camera in.  I am nervous, but at the same time, doc says this gives me the best chance at beating this thing.

He is not sure about adjuvant chemo yet, but I imagine it's going to have to be done. I know the recovery will be long, but it should be worth it. (I hope). On a positive note,

I don't have to wait on any more test results, for now. I welcome any advice. Thanks, and best wishes to all.

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Hi Mark, 

I'm glad to hear you have a surgery date set. Here's my advice. I was supposed to sleep with chest/head elevated 45 degrees after surgery. This is common advice. I got a 12 inch wedge pillow, which gave me the right elevation and was comfortable. I tried to do it with a reading pillow and other pillows and just ended up with a sore neck. I think the wedge is the way to go. .

Bridget O

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Mark,

To occupy your time waiting for surgery, I suggest you prepare your home for recovery.  

Visit a mattress store and audition some wedge lift pillows.  Ideally, you want to purchase a pillow than elevates your back at least 30 degrees.  Forty-five would be better but 30 will do.  Note the manufacturer and model number, then buy on line for savings compared to retail.  Get the pillow soon and start getting use to it before surgery.

You live alone as I understand it.  I would reach out to family and see if someone can stay with you for 7 to 10 days.  If you have a complete pneumonectomy, you'll benefit from the help.  If you can't arrange for someone, then arrange a home health care visit for a week to 10 days.  Someone will need to change dressings and you may have a chest drain installed depending on the surgery.

Stay the course.

Tom

 

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I agree with Tom.  You will undoubtedly need help to change dressings and help with some other things, such as helping with showers as soon as you're allowed to take them. I found a bath bench/shower seat helpful after sugery. If at all possible, get someone to stay with you the whole time  the first couple of days at home, so you can see how you do after the anesthesia and with pain meds.  

Bridget O

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Great ideas. I have a wedge pillow on the way. As far as company, my father lives next door to me. Although he is 79, he still gets around OK and can come over at

a moments notice. I am going to look into home nurse visits though.   I am going to hospital today for pre-op, and will see if they can send me in the right direction for this.

I really appreciate the support and ideas from all of you. Also, now that I am not a "newbie" should I move my posts to another forum like the "updates" forum?

Just wondering...

 

Mark

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Hi, Mark,

Glad to hear you are getting things squared away!  I had the VATS surgery, which wasn't too dramatic, but I did have a home health care nurse come in just a couple of times--the first one actually helped me decide I should call the doctor about being re-admitted due to the non-resolution of the "crepitus" (little air bubbles that get under the skin and make your face/neck swell up--not terribly common but not that rare). The home care nurse said mine was the worst case she, personally, had ever seen.  I went back in the hospital for a few days with a chest tube to get properly deflated.

Personally, once I was planning for surgery and looking for guidance,  etc., I moved to the other forums.  I see there is now a "surgery" forum that wasn't there a year ago, so that might be a good place to start.  There's really no "wrong" place to post--it's just that posting in the appropriate forum makes it easier for people seeking threads on specific subjects to find information helpful to them.

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Mark,

I just want to throw my 2 cents in about assistive devices (shower chair, etc).  Since using them will likely be temporary, consider looking in your community to see if there is a place where you can "rent" these items (not the wedge pillow, but anything else that can easily be sterilized).  I use the word "rent" very loosely because there are lots of places around that have devices to use for free.  My mom lives in a smaller community and she has a great "store" that allows folks to borrow assistive devices.  We use the service mainly for my dad, but we have used a wheelchair, walker, shower chair, and several other items on a longterm, but temporary basis.  Cancer treatment can cost a lot, so anywhere we can save, makes me happy!

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We'll be thinking of you next week, Mark! Please continue to keep us updated. We are here for you.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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I just wanted to thank everyone for their support, ideas, suggestions and advice. Today is surgery day, so I will report back most likely

when I return home. Should be a week or so +/-  .

 

Mark

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I will be praying for you, Marc! You're not alone, we are all pulling for you and will be anxiously waiting to hear from you as you recover.

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Hi everybody!!

Thanks for all the well wishes!!!

I am home. Surgery went well, so they tell me. They did a full pneumonectomy as expected. Doc said tumor was larger than they expected, but they got it all. He removed several lymph nodes, but I have not seen path reports on them yet. I do have an appointment with an onc., just not sure when yet. As far as the surgery itself, they tell me that I handled it well, definitely some post surgical pain and "weird" feelings where my lung used to be. Today marks just over a week since surgery, and I can already walk around my house, just slowly and with a couple of rest stops along the way. I have my "breathing toy" to practice with, and some pain meds when I need them. Overall I feel pretty good, considering. Now my goal is to just improve a little every day, and wait for the next chapter to unfold.

That's all for now,

 

Mark

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Great news! I'm 4 weeks out of an open lobectomy (not as invasive as yours) but a big surgery just the same. Try not to get discouraged in the healing process, it will come. It seemed like each week I turn a corner in regards to not as much pain and the ability to do more. I try to describe it to my daughter, all that's going on in my torso... "It's like a pulling, burning, bruised feeling in addition to zings, zangs and spasms.."  SO much going on - apparently all normal. So glad they got it all, keep us posted!

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You're doing really well Mark. I got help here on pain relief ideas... besides gabapentin prescribed, I have used salon pas (lidocaine) patches and extra strength tylenol. Listen to your body to get the rest you need. The wedge on the bed didn't work for me. I still, after 7 weeks, use a reading pillow along with another pillow.

I have been back to M D Anderson, surgeon and oncologist said top upper right lobe removed and 12 lymph nodes...4 were cancerous. They said they do not see any cancer remaining but feel follow up chemo can chase the possible minuscule unseen chemo but no radiation.

Two weeks later, M D Anderson radiologist wants to do 5 weeks, M-Friday radiation.

That's the cancer journey....never a straight line.

 

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