Just sprung from the hospital

[alascerca]

Dear and lovely group,

First things first: I write a lot and apologize for my long-windedness! Questions in bold.

I am a rather new member, and came out of hospital on the 24th of October (Sunday night) after a week there; for a resection of the upper left lung. The surgeon felt that a resection was sufficient instead of the whole lobectomy initially expected, and seems pleased with his work. He told my husband that he spotted something on my lower lobe while he was doing the surgery, and took that out just to check it, but doesn't suspect that it is malignant. OK. So... I have been home four days and have seen a visiting nurse once; she came yesterday. She was shocked by the amount of crackling that she heard, but I think that perhaps she is also not accustomed to lung cancer patients just sprung from surgery.

I have a lot of pain in a spot which I would imagine sits over where the heart is. I believe that it is residual pain from the chest tubes (I had those horrors in me for 6 days; what HELL), but am not quite sure how to evaluate it. This spot hurts when I breathe, so it is activity-exacerbated.  I am making sure that the incisions are clean and that I am showing no signs of complications.

Oddly -- at least to me -- I have no follow up appointments yet, and no doctors have called to check in on me at all. I distinctly had the feeling that the surgeon was there solely to cut, and that was that, so I am not surprised by this silence from him, anyway.   I feel as though I have been unceremoniously kicked from the nest.

Pathology has not come back yet, so I am guessing that they are awaiting those results from which to make the most fitting follow up appointments?  Does it seem strange four days out, that there has been no follow up, and that there is no appointment yet? Or is this par for the course since pathology is still not in yet? I feel as though I were at loose ends. I am not sure whether to call pulmonology, or oncology, or the surgeon's office, and will soon wend my way through that tangle.

Also...I'd like some validation or correction: this residual pain is/ can be quite strong, right? I handle pain well, and am managing.  I believe that it feels worse than it is because it's a constant reminder of today's uncertainty...a fate that's been thrown to the skies.

Ever appreciating your presence here. Interestingly, I am a counselor for children who have cancer and I facilitate a large adult group, also. Due to previous cancer disability, I do not work a regular job any more, but I  I am well aware of the common emotional fallout post-surgery, and am trying to walk myself through that sensation of depression. I plan to write about it more,  as once again, I am the one experiencing it (this is my third major cancer; ugh). Some of it is PTSD, a culmination of the last two worry-laden months, combined with the strange experience of assimilating that this did happen, that it is/was cancer, and that it is I this time throwing down the proverbial gauntlet. Lots to ponder, and I hope that, just as I work with others,  I can gently counsel myself through these myriad emotions that are the fallout of an experience such as this.

Thanks so much for this active, friendly forum! I declare this to be the day of taking some small steps outside this shell of woe that envelops me.  Yours, Joana

[LexieCat]

Hi, Joana,

Congrats on getting through your surgery! Keep an eye on the "crackling"--that's called crepitus (or subcutaneous emphysema)--it means air has leaked into the tissue beneath the skin. It usually resolves on its own, but in my case it got much worse and I was swollen up like a balloon from chest to mid-face. I had to be re-admitted for a few days with a chest tube to slowly deflate. It's not particularly dangerous, but it's EXTREMELY uncomfortable and if yours gets worse, you want to let the surgeon know.

The pain after lobectomy seems to vary a lot from person to person. I had very little pain; some have quite a bit more. I wouldn't worry that it's signaling any problem at this stage after surgery (you are only several days out), as long as you don't have a fever and your incisions look OK (i.e., not infected).

It does seem odd that you don't have a post-surgical followup scheduled (which shouldn't have to wait on pathology results) and that you haven't had someone from the surgical team or the hospital checking on how you are doing.

One thing to learn up front is to advocate for yourself. If you need something and aren't getting it--ASK for it. And keep asking/insisting until you are heard and get a satisfactory response.

Be sure to do your breathing exercises, even if it's uncomfortable--they really will speed your recovery.

BTW, I just had the tube draining fluid from my pericardium yanked today--and I was THRILLED to lose that puppy.

Hang in there, and follow up on your followup.

[LouT]

Joana,

Welcome back to the land of the "I already had my surgery, thank you."   Lexie covered things pretty well.  Everything you described is normal for our group; pain, confusion, some depression, more questions.  In my case the surgeon had his office contact me about 4 or 5 days after surgery for a meeting a few weeks later.  I assume that was to make sure that all biopsies and other tests were concluded and read.  But, to answer your question I would likely call the surgeon.  After all, you are in the healing process and he is the best one to see about any of the symptoms you may be experiencing.  BTW, Lexie is spot on about the crackling.  If it keeps up, put a call into the surgeon's office.  The spirometer is now your best friend and pain in your a**.  But I set my phone to remind me to do it every 15 minutes (No you don't have to do it that often), but I made it a test of wills between me (a 6'2" 190lb man) against the device (a 6oz piece of plastic with a ball in it).  I never said I was normal and reasonable.  

But you got through your surgery and this is part of the process that will keep this disease from advancing so for that you can be grateful.  Or, at least as grateful as a person in pain with crackling can be. 

BTW, chest tubes are the worst...I actually wrote a post about mine while I was still in the hospital, it can be found here.

Keep smiling Joana, we are here for you.

Lou

[ChiMama]

Hey Joana - as Lexi says, be sure to advocate for yourself. I had a followup set with my surgeon before I left the hospital and also called them when i had questions.

One question I had was a crackling sound when I breathed. I was released from the hospital on a Friday and on Sunday the crackling started along with intermittent rapid heart rate. Finally in the early evening on Sunday the rapid heart rate was pretty high and continuous along with the weird cracking with every breath so I went to the ER. Turns out I had a pneumothorax and was readmitted so they could put in another chest tube to drain it. I was in the hospital 2 more days.

The chest tubes were the worst! I had massive pain where the chest tubes were - more than the surgical incisions! The one right under my left breast was especially painful, all the time, was constantly being rubbed due to the location, and looked oozy awful too. That pain lasted for several months.

If you still have these issues I would call the surgeon.

[Tom Galli]

Joana,

I'm glad to know you are home from surgery and on the path to recovery.

As other have said, the crackling sound is unfortunately "post lung cancer surgery" normal. Ensure you use your spirometer as instructed. 

I'd call the surgeon's office and schedule your stitch or staple removal. I'm surprised this wasn't scheduled for you before you were discharged from the hospital.  I'd also mention your pain during that telephone call. When you see your surgeon, inquire about your pathology report.

I'd also take the time to find and consult with a medical oncologist. This is the discipline who will track you after surgery. You will have a routine of scheduled scans, perhaps quarterly at first, to guard against a recurrence. Lung cancer has a nasty tendency to recur after "successful" treatment and these scans are very important. Also, ensure your surgeon's office knows about your medical oncologist so records and test results can be transferred.

Stay the course.

Tom