Update on Mom's surgery

shannalanai
shannalanai Member Posts: 22
edited March 2014 in Lung Cancer #1
just wanted to send out an update to everyone. Mom did really well. The surgery ended up taking about 4 1/2 hours long. They removed her whole upper lobe of her lung, which about 1/3 of her lung. It came back that the spot on her lung was definitely cancer. They will find out from the pathology reports on Tues or Wed if it is definitely lung cancer or where the breast cancer has metastisized. She will be taking radiation and chemo for the breast cancer but no additional treatments should be needed for the cancer in the lung. So far it looks as if there is nothing in her lymph nodes. She is ICU tonight and will be there for the rest of the night and possibly tomorrow. They may move her to PCU(I think is what they call it) which is a step down from ICU. She can not go into a regular room until her chest tubes can come out. She did get sick after surgery, think she tried eating a little too soon because she was hungry and her stomach didn't respond well. Hopefully in the moring she will be able to hold food down. She is in a lot of pain and the surgeon said she would be in alot of pain for a long time and it would take her a long time to recover due to the seriousness of the surgery and how much they had to do in there. Anyways that is all for now. I don't know when she will get to come home. Thank you to everyone who has been praying for her and please keep her in your prayers.

Comments

  • cabbott
    cabbott Member Posts: 1,039 Member
    #2
    Thanks for the update! If you are staying with her,don't forget to take care of yourself. Sleep or rest when she does, eat regularly and as normally as possible, and take breaks when you need to. The nurses in my hospital were great. I was surprised at how helpless I was the first day or two. It also surprised me how much better I was after three or four days. I pray she recovers quickly too.
  • HANNA668
    HANNA668 Member Posts: 7
    #3
    Hi it seems that I had the same surgery as your mom. I am 40 years old and last November I had 3/4 of my left lung taken out, it was a carcinoid typical tumor which is rare in the lung usually it is in the stomach. I to was in an operation for 8 hours, and stayed in the ICU for a day and a half then they moved me to PCU for about a week. My chest tubes and the nerve block in my back came out within a day or two. They get you up and about very quickly. They want you to walk around a lot, so even though she may not want to and fight you on it my mom hung in there and made me get up and also do the breathing exercises, they are very important to get up all that junk in there. I didn't want to do that either but the nurses kept on me. I was sick for three years, misdiagnosed I was throwing up blood, had pneumonia all the time and lost a bunch of weight etc. I thank my lucky stars that I had that operation at Mass General Hospital the surgeon saved my life. I have not been sick one day since November. Once they took the tumor out, I did not need anything further like Chemo or Radiation it wouldn't have helped. They will just check me once a year for 5 years to make sure that I am Cancer Free. The worst pain your mom is going to be in from my experience is the broken ribs. If they went in through her back like me my ribs still hurt when i breath, or lie on my back but it is getting better every day. The best thing I can think about that I didn't have that I would get would be renting a hospital bed so that your mom doesn't have to get in her bed and have to lie back, that was very painful again because of the ribs. It is very scarey for the family as well as for your mom. But please tell her my story and there is a light in the near future for your mom she will feel so much better after this surgery. My bones don't hurt like they use to from the lack of oxygen i wasn't getting because my lung collapsed. If you have any questions at all about her lung surgery please don't hesitate to get back in touch with me. I wish the best for your mom and tell her she will be up and about, take it easy for about 8 to 12 weeks don't let her lift more than 5 lbs it is very important for her recovery. God bless!
  • shannalanai
    shannalanai Member Posts: 22
    #4
    I go up to the hospital in the mornings and come home late that night. I wait until she is settled down for the night to sleep and then I come home so I can spend about an hour with my boys in the morning before I take off again. My step dad stays with her all the time up there and sleeps in the room with her. Its been a really rough couple of days. Unfortunately we have not been very fortunate with the hospital she has been in. Very poor patient care. They did great with her in ICU and she really did good until they decided she was so good that she could move and since the PCU was full they put her on a regular floor (in the room farthest from the nurse's desk) that was full and understaffed. It got to the point we had to tell each nurse(when we would finally see one) that she has chest tubes and to please not pull on them. Everyday so far my aunt(who is an RN) has checked her and she was soaking wet where he chest tubes had leaked all over her and no one had bothered to check her dressings. No one said a word about getting her up and or what to do on breathing excercies. The surgeon was very ill when he came in, seeing what shape she was in. So I have been doing my best to learn patient care as I go. Been talking to her former ICU nurse on what to do to help her. She laid in that bed most of the day and no one came to get her up or nothing. Her cathader bag would be full and they wouldn't change it. I finally called up there and told them this cathader bag is full and it needs to be changed and they came 1 and 1/2 hours later. I was so mad. Then I had to go take care of some things at her house for her(I live 45 min away from her house and its 45 min away from the hospital) so I couldn't get up there until after 1pm. Her surgeon told us and the nurses that 1st day on the reg floor she needed to get up at least 3 times a day. My step dad asked the nurses to come and help get her up at breakfast and they said no because they didn't have orders to get her out of bed. At1pm no one had gotten her out of bed. I about came unglued. We should be close to going home by now and she has been taking 10 steps back everyday and on 2 steps forward. So we finally go it throgh to the nurses that she is supposed to be up out of that bed. We have been afraid to do it ourselves because of all the tubes and they told us not to do it without nurses, and how weak she was but we have finally decided we couldn't possibly do it any worse than they are.She has not been happy with us because we have been staying on her to do her breahting and do her coughing and to get up. Sometimes she tells us to leave her alone but we just tell her we are doing it becuase we love her and we don;t want her to stay in this hopsital longer than she has to. Its so hard because I hate doing things to cause her more pain but I know she will get pnuemonia if I don't and she will not get stronger and pull of this if she does not. Between fighting with her and fighting with the nurses its very draining. I had to fight with them today just to get her some food she might eat. They still kept her on post op diet and it was changed to regular diet. They kept telling me no they already brought her a tray and that was she was going to get and I finally had to call down to dietary myself to get a tray sent up and then for the first time in days...SHE ATE!
    Sorry I am going on this long tangent but I am so frustrated! She hasn't even begun to take small steps, she just got her cathader out today and she can't make it to the bathroom so we have a potty chair for her. I know this is a hard surgery but she was doing really good till she moved too soon to a regular floor and has been neglected. If it wasn't for us they would have let her lie there soaking wet in her drainage and never moved her! Let this be a lesson to anyone that reads this to make sure you are in a good hospital. And from the very beginning educate yourself on what the nurses should be doing and should be telling you to do. have finally figured out that even though that we can't rely on them so we have to just do it ourselves. That is what they are supposed to be there to do. I can't imagine what poeple without family members up there watching out for them would do. Tomorrow will be her 4th day there and she is not looking like she will get to go home anytime soon. I am praying for a better day tomorrow. Its her 50th birthday. I got decorations to decorate her room, I am doing it luau style to try to add some colorful cheer to her room and perhaps she will think of Hawaii and it will help ease her pain.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #5
    shannalanai said:

    I go up to the hospital in the mornings and come home late that night. I wait until she is settled down for the night to sleep and then I come home so I can spend about an hour with my boys in the morning before I take off again. My step dad stays with her all the time up there and sleeps in the room with her. Its been a really rough couple of days. Unfortunately we have not been very fortunate with the hospital she has been in. Very poor patient care. They did great with her in ICU and she really did good until they decided she was so good that she could move and since the PCU was full they put her on a regular floor (in the room farthest from the nurse's desk) that was full and understaffed. It got to the point we had to tell each nurse(when we would finally see one) that she has chest tubes and to please not pull on them. Everyday so far my aunt(who is an RN) has checked her and she was soaking wet where he chest tubes had leaked all over her and no one had bothered to check her dressings. No one said a word about getting her up and or what to do on breathing excercies. The surgeon was very ill when he came in, seeing what shape she was in. So I have been doing my best to learn patient care as I go. Been talking to her former ICU nurse on what to do to help her. She laid in that bed most of the day and no one came to get her up or nothing. Her cathader bag would be full and they wouldn't change it. I finally called up there and told them this cathader bag is full and it needs to be changed and they came 1 and 1/2 hours later. I was so mad. Then I had to go take care of some things at her house for her(I live 45 min away from her house and its 45 min away from the hospital) so I couldn't get up there until after 1pm. Her surgeon told us and the nurses that 1st day on the reg floor she needed to get up at least 3 times a day. My step dad asked the nurses to come and help get her up at breakfast and they said no because they didn't have orders to get her out of bed. At1pm no one had gotten her out of bed. I about came unglued. We should be close to going home by now and she has been taking 10 steps back everyday and on 2 steps forward. So we finally go it throgh to the nurses that she is supposed to be up out of that bed. We have been afraid to do it ourselves because of all the tubes and they told us not to do it without nurses, and how weak she was but we have finally decided we couldn't possibly do it any worse than they are.She has not been happy with us because we have been staying on her to do her breahting and do her coughing and to get up. Sometimes she tells us to leave her alone but we just tell her we are doing it becuase we love her and we don;t want her to stay in this hopsital longer than she has to. Its so hard because I hate doing things to cause her more pain but I know she will get pnuemonia if I don't and she will not get stronger and pull of this if she does not. Between fighting with her and fighting with the nurses its very draining. I had to fight with them today just to get her some food she might eat. They still kept her on post op diet and it was changed to regular diet. They kept telling me no they already brought her a tray and that was she was going to get and I finally had to call down to dietary myself to get a tray sent up and then for the first time in days...SHE ATE!
    Sorry I am going on this long tangent but I am so frustrated! She hasn't even begun to take small steps, she just got her cathader out today and she can't make it to the bathroom so we have a potty chair for her. I know this is a hard surgery but she was doing really good till she moved too soon to a regular floor and has been neglected. If it wasn't for us they would have let her lie there soaking wet in her drainage and never moved her! Let this be a lesson to anyone that reads this to make sure you are in a good hospital. And from the very beginning educate yourself on what the nurses should be doing and should be telling you to do. have finally figured out that even though that we can't rely on them so we have to just do it ourselves. That is what they are supposed to be there to do. I can't imagine what poeple without family members up there watching out for them would do. Tomorrow will be her 4th day there and she is not looking like she will get to go home anytime soon. I am praying for a better day tomorrow. Its her 50th birthday. I got decorations to decorate her room, I am doing it luau style to try to add some colorful cheer to her room and perhaps she will think of Hawaii and it will help ease her pain.

    I hope you will write a letter to the hospital director about your concerns. It sounds like the nurses are totally understaffed, not that that excuses poor treatment. I remember that sometimes just sitting upright in the chair next to my bed was rough. The nurses and PT person told me that it was good to try to sit up for period of time if I could, something like 30 minutes or a bit more. Getting in and out of bed, though, was rough. I just didn't have any strength. It came back though in a few weeks and even after a week I was markedly better. I had a potty chair too. I would have been very embarassed about it, but I was too sick and weak to even think about making it to the bathroom at first. Apparently very few patients on my hall ever used the bathrooms. When I used my shower, the nurses said I was the only one to do so that week! That was the day I left and I only did it because I wasn't sure I would be able to manage the shower at home which wasn't as handicapped accessible . After a week in the hospital--well, I needed a shower just to stand the ride home! The chest tube has to be out before they send you home I think, but you don't have to be walking to go home. I'm glad I was walking, but I understand that it is better to get home sooner rather than later. Good luck!
  • shannalanai
    shannalanai Member Posts: 22
    #6
    cabbott said:

    I hope you will write a letter to the hospital director about your concerns. It sounds like the nurses are totally understaffed, not that that excuses poor treatment. I remember that sometimes just sitting upright in the chair next to my bed was rough. The nurses and PT person told me that it was good to try to sit up for period of time if I could, something like 30 minutes or a bit more. Getting in and out of bed, though, was rough. I just didn't have any strength. It came back though in a few weeks and even after a week I was markedly better. I had a potty chair too. I would have been very embarassed about it, but I was too sick and weak to even think about making it to the bathroom at first. Apparently very few patients on my hall ever used the bathrooms. When I used my shower, the nurses said I was the only one to do so that week! That was the day I left and I only did it because I wasn't sure I would be able to manage the shower at home which wasn't as handicapped accessible . After a week in the hospital--well, I needed a shower just to stand the ride home! The chest tube has to be out before they send you home I think, but you don't have to be walking to go home. I'm glad I was walking, but I understand that it is better to get home sooner rather than later. Good luck!

    We had a MUCH better day today! So many prayers were answered today. She was alert and feeling better. She is still in a huge amount of pain but she is making progress! They took out her IV today and that really helped her to get more mobile and one less tube!

    We decorated her room up for her birthday! We did her room Luau style for her big 5-0 birthday. Tried to add some color and cheer into her room. Since she couldn't go to Hawaii for her birthday we brought it to her! :) We had a really pretty choclate cake for her and balloons galore! (though not as many as I had originally wanted but I considered that the nurses might have trouble finding her and then the trouble trying to get that many balloons home hehe) For having to spend her birthday in the hospital I have to say I think she had a great birthday. It really cheered her up all the visitors that came and brougt or sent her pretty things to brighten her day! It meant alot to all of us. She smiled so much today, it was just wonderful! I even got her cracking up laughing but she paid dearly for that. It was great to see her doing so much better. We hope she is able to get the chest tube out tomorrow. That is the main thing that is causing her so much pain and prohibiting her from being able to walk around. We had some good nurses today also and so it really helps when she gets the care she needs. It makes it so much easier God truly blessed her on her birthday today!

    ~Shanna
  • cabbott
    cabbott Member Posts: 1,039 Member
    #7
    shannalanai said:

    We had a MUCH better day today! So many prayers were answered today. She was alert and feeling better. She is still in a huge amount of pain but she is making progress! They took out her IV today and that really helped her to get more mobile and one less tube!

    We decorated her room up for her birthday! We did her room Luau style for her big 5-0 birthday. Tried to add some color and cheer into her room. Since she couldn't go to Hawaii for her birthday we brought it to her! :) We had a really pretty choclate cake for her and balloons galore! (though not as many as I had originally wanted but I considered that the nurses might have trouble finding her and then the trouble trying to get that many balloons home hehe) For having to spend her birthday in the hospital I have to say I think she had a great birthday. It really cheered her up all the visitors that came and brougt or sent her pretty things to brighten her day! It meant alot to all of us. She smiled so much today, it was just wonderful! I even got her cracking up laughing but she paid dearly for that. It was great to see her doing so much better. We hope she is able to get the chest tube out tomorrow. That is the main thing that is causing her so much pain and prohibiting her from being able to walk around. We had some good nurses today also and so it really helps when she gets the care she needs. It makes it so much easier God truly blessed her on her birthday today!

    ~Shanna

    Tell her Happy Birthday! from a 2 year survivor (well, at least I will be come August 2, 2008). I was thrilled as punch to get my chest tube out. The first one was a bit rough coming out but the second one I had no pain. Unfortunately, pain means the nerves work and no pain meant the opposite. Even when it hurt, it was not so bad that I needed a shot or anything. I just got big eyes and said "OW!" louder than I expected. Twenty-four hours later I was heading home. I hope your mom gets home soon too.
  • shannalanai
    shannalanai Member Posts: 22
    #8
    cabbott said:

    Tell her Happy Birthday! from a 2 year survivor (well, at least I will be come August 2, 2008). I was thrilled as punch to get my chest tube out. The first one was a bit rough coming out but the second one I had no pain. Unfortunately, pain means the nerves work and no pain meant the opposite. Even when it hurt, it was not so bad that I needed a shot or anything. I just got big eyes and said "OW!" louder than I expected. Twenty-four hours later I was heading home. I hope your mom gets home soon too.

    I told her your birthday wishes and she smiled and seemed tickled to get them. She is so happy because they might send her home tomorrow. They said they would take her chest tube out in the morning and wait 6 hours and do an xray and if her lung is still staying inflated she will get to go home. She had a really good day and a really bad time. Good day: She walked up the ahll and back, she may get to go home, and she got into some real pajamas instead of that old hospital gown.
    Bad time: The morning shift nurse was not being very efficient in her care(imagine that with the days we have had). WE would call down for her pain meds because she was always hurting when time was due for them and an hour later I would have to go down there and ask them where are her meds? Then 30 min later they would finally show up with them. Well after all that walking today she was in a great amount of pain and she went 2 hours without her meds while in that pain because the nurse did not bring them. She started hurting so bad she went into muscle spams and it took an hour after she got her pain meds for them to calm down and so she was drained for the rest of the day and in a really negative mood. She had lost her patience with them by that time.I felt so bad for her and I really was ill with the nurse. We got it taken care of though with shift change and let the other nurse know not to let that happen PLEASE and why not and the other nurse said that was really poor quality of care and unacceptable so she is going to talk to the nursing supervisor.
    That is one thing you were talking about where they cut a nerve. Her muscles in her chest, back and arm on that side keep spasming when she gets into too much pain and the whole underside of her arm on that side is numb. She can't feel it. So I wonder if they cut a nerve there. They removed her upper right lobe.
    Anyways thanks os much for the prayers and support. I really hope she gets to go home tomorrow as planned!
  • Greggriggs
    Greggriggs Member Posts: 132
    #9
    shannalanai said:

    I told her your birthday wishes and she smiled and seemed tickled to get them. She is so happy because they might send her home tomorrow. They said they would take her chest tube out in the morning and wait 6 hours and do an xray and if her lung is still staying inflated she will get to go home. She had a really good day and a really bad time. Good day: She walked up the ahll and back, she may get to go home, and she got into some real pajamas instead of that old hospital gown.
    Bad time: The morning shift nurse was not being very efficient in her care(imagine that with the days we have had). WE would call down for her pain meds because she was always hurting when time was due for them and an hour later I would have to go down there and ask them where are her meds? Then 30 min later they would finally show up with them. Well after all that walking today she was in a great amount of pain and she went 2 hours without her meds while in that pain because the nurse did not bring them. She started hurting so bad she went into muscle spams and it took an hour after she got her pain meds for them to calm down and so she was drained for the rest of the day and in a really negative mood. She had lost her patience with them by that time.I felt so bad for her and I really was ill with the nurse. We got it taken care of though with shift change and let the other nurse know not to let that happen PLEASE and why not and the other nurse said that was really poor quality of care and unacceptable so she is going to talk to the nursing supervisor.
    That is one thing you were talking about where they cut a nerve. Her muscles in her chest, back and arm on that side keep spasming when she gets into too much pain and the whole underside of her arm on that side is numb. She can't feel it. So I wonder if they cut a nerve there. They removed her upper right lobe.
    Anyways thanks os much for the prayers and support. I really hope she gets to go home tomorrow as planned!

    God Bless your Mom .
    I remember the first time they walked me down the hall.
    I thought I don't want to alive like this. I had my whole lung removed so they did not have tubes in me. Lucky me !!!! I have heard they cause a lot of pain an troubles like infection an such .
    Funny thing after about a month I would roll over an hear this sloshing sound . They never told me but one of my trips to the hospital the Doc told me it was almost full.
    when they remove the lung they leave the plura and it fills up with body fluid . Lucky cause when you roll over all your parts would fall to the right or left depending witch lung they removed .
    Yep some of the nurses should quit because all they are there for is a check.
    Tell your Mom after 6 weeks I was walkin a mile an a half.
    I still have a bunch a pain but i think its a side affect of Chemo I am 66 years old guess ya don't heal as fast as a youngster.
    Tell you mom My Prayers are with Her.
    Greg
  • cabbott
    cabbott Member Posts: 1,039 Member
    #10
    Greggriggs said:

    God Bless your Mom .
    I remember the first time they walked me down the hall.
    I thought I don't want to alive like this. I had my whole lung removed so they did not have tubes in me. Lucky me !!!! I have heard they cause a lot of pain an troubles like infection an such .
    Funny thing after about a month I would roll over an hear this sloshing sound . They never told me but one of my trips to the hospital the Doc told me it was almost full.
    when they remove the lung they leave the plura and it fills up with body fluid . Lucky cause when you roll over all your parts would fall to the right or left depending witch lung they removed .
    Yep some of the nurses should quit because all they are there for is a check.
    Tell your Mom after 6 weeks I was walkin a mile an a half.
    I still have a bunch a pain but i think its a side affect of Chemo I am 66 years old guess ya don't heal as fast as a youngster.
    Tell you mom My Prayers are with Her.
    Greg

    Thanks for reminding me. I "sloshed" a bit too and I only had the middle lobe taken out. It eventually evened out and I don't notice it anymore. The doctor said that sometimes the fluid has to be removed and that they could do that in the office. I guess that would happen if the chest tube was out and the fluid was in the wrong place. He decided against it for me saying it would probably resolve on its own (which it did). He mentioned that infections can be problematic if they have to drain you. I didn't have any problems with infections though I did drain some from the chest tube site for a week or two after getting home. I needed big gauze patches to cover the area, not the "no-stick" variety. Walmart had the 2 inchers that worked well and I used some first aid tape to hold them in place. I could not wear a bra for a week or two at all. I ended up getting a camisole bra from Walmart so that I could go out in public. It took more than one week to get the swelling down, so don't let your mom get discouraged. Things get better. It just takes time.
  • shannalanai
    shannalanai Member Posts: 22
    #11
    Greggriggs said:

    God Bless your Mom .
    I remember the first time they walked me down the hall.
    I thought I don't want to alive like this. I had my whole lung removed so they did not have tubes in me. Lucky me !!!! I have heard they cause a lot of pain an troubles like infection an such .
    Funny thing after about a month I would roll over an hear this sloshing sound . They never told me but one of my trips to the hospital the Doc told me it was almost full.
    when they remove the lung they leave the plura and it fills up with body fluid . Lucky cause when you roll over all your parts would fall to the right or left depending witch lung they removed .
    Yep some of the nurses should quit because all they are there for is a check.
    Tell your Mom after 6 weeks I was walkin a mile an a half.
    I still have a bunch a pain but i think its a side affect of Chemo I am 66 years old guess ya don't heal as fast as a youngster.
    Tell you mom My Prayers are with Her.
    Greg

    I can't imagine how it would feel to have a whole lung removed. I know a guy in the town I live in that had his whole lung removed due to TB and his other lung actually grew bigger to make up for the other one being gone. Your body has a way of compensating when it loses something.
    Its really sad how bad healthcare is this days in most places. YOu either get staff who could care less and forgets how it feels when you are on the other side as a patient or you have great staff who are so understaffed that they can't do it all.
    How long after your surgery was it when you began chemo? They are saying she can't start until her incision is completely healed.
    I will definitely tell her that she is in your prayers. We both appreciate it very much! You are in my prayers as well.
    ~Shanna
  • shannalanai
    shannalanai Member Posts: 22
    #12
    cabbott said:

    Thanks for reminding me. I "sloshed" a bit too and I only had the middle lobe taken out. It eventually evened out and I don't notice it anymore. The doctor said that sometimes the fluid has to be removed and that they could do that in the office. I guess that would happen if the chest tube was out and the fluid was in the wrong place. He decided against it for me saying it would probably resolve on its own (which it did). He mentioned that infections can be problematic if they have to drain you. I didn't have any problems with infections though I did drain some from the chest tube site for a week or two after getting home. I needed big gauze patches to cover the area, not the "no-stick" variety. Walmart had the 2 inchers that worked well and I used some first aid tape to hold them in place. I could not wear a bra for a week or two at all. I ended up getting a camisole bra from Walmart so that I could go out in public. It took more than one week to get the swelling down, so don't let your mom get discouraged. Things get better. It just takes time.

    I will have to warn Mom about the possible sloshing. So far he sealed it up with some vaseline patches and told her not to touch her dressing for now. Her post op appointment is Friday and I guess after that she will have to start changing her bandages. I got her a too big sports bra but she was so swollen on the day she was coming home that she couldn't wear it. She had said something about trying a camisole top. I will pass along the word it worked for you. I think it discoraged her when she couldn't wear the sports bra. However things are getting better day by day. Baby steps....its about appreciating the baby steps.

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