Going through lobectomy alone

Hello, Snorfish. I do not have the type of problem and upcoming surgery you will be facing but, I do know what it is like to face cancer by myself because no one, including family, wanted to help. I’d be happy to listen and be supportive in anyway I can, although, I do not know anything about a lobectomy. I sending best wishes your way.

Dearest snorfish! I am so sorry to hear of this! I can’t tell you how you will be, as everyone is so different. Some breeze right through this and other’s have a more difficult time. Do your doctors know you’ll be alone afterward? You may be able to set up some kind of after-care right through the hospital. social services maybe? I know mine wouldn’t let me leave alone. The first week was my hardest because it’s just getting used to your body again. Your breathing, your movements, your sleeping are all going to be different until you get a feel for how you feel. Depending on your pain levels and meds. You should definitely at least have someone checking on you a few times a day. I feel so bad! I wish I lived near you I would come and be with you! I pray it goes well for you! Check into social services now, with the hospital. If they don’t have anything they may be able to direct you to another agency to help you.
Best wishes to you!🙏🙏🙏🙏
Cindy

You WILL need help! I couldn’t take a shower by myself or do what seemed to be simple tasks for several weeks. I did have a few of the incisions that did not close up properly and had to be packed twice a day and I would have not been able to do that by myself. Eveery surgery and revovery is different. Best of luck.

I’m so sorry to hear this. When I had my lobectomy, I was told that I would need someone with me for a week after surgery and if I didn’t have anyone to help they would order help to come in via Medicare. Or, they could possibly send you to a rehab center for awhile. My lobectomy was robotic so the recovery wasn’t too bad. Sending blessings.

Where are you having surgery? Please look into this:
https://www.cancer.org/support-programs-and-services/patient-lodging.html

Thank you so much. I am at Swedish Cancer Institute in Seattle. I know there is not a Hope Lodge unfortunately. There is indeed and Extended Stay America. They are not sure if they are participating yet. Unfortunately it's still a hotel room. That's fine. It has a kitchenette, etc. I'm just scared, I guess, to be alone and not have anyone to tell if I hurt.

@jenben59 That is so kind < 3 You may be hearing for me. I hope you are ok having to go it alone.

@cmcguire10 Oh thank you! At Swedish they assign you a team. I don't know if this is standard practice or not but you get a PA, an interventional radiology team, a thoracic surgeon and an oncologist....in that order as you progress.

I have written the PA and asked her to make sure that it is visible everywhere on my chart that I am alone and will be going to a hotel.

This may be silly but I'm afraid of slipping through the cracks and being sent out to a hotel alone. I will absolutely contact hospital social services!! I'll pin it on my gown if I have to lol.

Thank you for your insight in to recovery for me. You know, I thank God that I have the mental faculties to take care of all these things. WHEN I get through this I am 100% going to volunteer in assisting people who are alone and sick in navigating this process. It breaks my heart Every time I take care of another loose end I think "Oh my how would xxxxx do this if she didn't have family." So sad.

@whahoo Thank you! This is what I am hoping for. Preferably a rehab but I would take a visit.

I am not going to post a load of negative things on here however I do have a friend who had a lobectomy in 2013 and she did fall through the cracks. She did have a place to live so not in a hotel and was in what she called "a nursing home" for quite a while but when she got sent home, she actually did fall through the cracks and no one came to her home to cared for her for 2 weeks. When she finally called they were very apologetic and she had a physical therapist, a two other people (I don't remember their specialties.)

I do NOT think this is a normal occurrence. I think several things contributed to this situation. 1. She was not really capable of advocating for herself and 2. She got caught in the nightmarish bureaucratic mess of Medicaid. I feel fortunate to have Medicare and a Supplement as well as an outstanding team of Drs.

I am so grateful to all of you for the support. It's so scary....as you all know.

@hollyann72 Thank you for telling me this. I now know what I need to prepare for. I know every surgery is different but if I don't prepare for the hardest journey then I might be in trouble. I will figure it out. Thank you again.