A month after surgery

duquguy
duquguy Member Posts: 14 Member
in Kidney Cancer #1

The pain for the first two weeks at home was the worst. The third week felt amazing and I felt like I was way ahead of schedule. The fourth week I hit a wall. I have mild-to-moderate pain, but I've lost my appetite entirely. I feel weak and depressed and I'm sleeping 14-15 hours per night. Despite a positive prognosis and no additional treatments needed, I feel like I'm constantly awaiting it's return. Every cough is lung cancer. Tender glands on the neck must mean the cancer has spread to my lymph nodes. Before speaking to any physician, I had already determined that the loss of appetite was actually cancer spreading to my adrenal glands.

Recovery has been hard; harder than the pain itself.

Comments

  • AliceB1950
    AliceB1950 Member Posts: 244 Member
    edited November 2020 #2
    Please call your doctor. That

    Please call your doctor. That's an awful lot of sleep, and a lot of worrying. It could be a vitamin deficiency, depression, health anxiety, a physical problem unrelated to cancer - but not eating and sleeping that much means you won't have the strength to keep recuperating.  Are you walking every day and getting fresh air?  Call your doctor!

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #3
    AliceB1950 said:

    Please call your doctor. That

    Please call your doctor. That's an awful lot of sleep, and a lot of worrying. It could be a vitamin deficiency, depression, health anxiety, a physical problem unrelated to cancer - but not eating and sleeping that much means you won't have the strength to keep recuperating.  Are you walking every day and getting fresh air?  Call your doctor!

    I will. Thank you @aliceB1950

    I will. Thank you @aliceB1950. The week before I was hardly sleeping. This week is a complete 180 from the previous. I'll discuss it with one of the nurses this week.

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited November 2020 #4
    Thinking of you and hope next

    Thinking of you and hope next week will be even better. Prayers sent your way.

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    edited November 2020 #5
    They sure skimped on your.........

    pain meds following surgery, I just read your profile. Tramadol looked to be the strongest you had, thats like kiddie pain meds. Ive had 4 surgeries and after the first one Ive learned to bring my own pain meds in my overnight bag with me to the hospital. Its ridiculous how hospitals and drs are so afraid to prescribe decent pain meds especially after surgery. In my experiences if you dont control the pain right after surgery it will continue to linger on, jmo 

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #6
    Canadian Sandy said:

    Thinking of you and hope next

    Thinking of you and hope next week will be even better. Prayers sent your way.

    Thank you, Sandy! ::hug::

    Thank you, Sandy! ::hug::

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #7
    Hd67xlch said:

    They sure skimped on your.........

    pain meds following surgery, I just read your profile. Tramadol looked to be the strongest you had, thats like kiddie pain meds. Ive had 4 surgeries and after the first one Ive learned to bring my own pain meds in my overnight bag with me to the hospital. Its ridiculous how hospitals and drs are so afraid to prescribe decent pain meds especially after surgery. In my experiences if you dont control the pain right after surgery it will continue to linger on, jmo 

    Anxiety pain...

    They did give me two doses of dilaudid when the physical pain got very bad while I was admitted. I definitely didn't consider bringing my own meds and I don't think I would have anything as strong as Tramadol anyway. lol

    Fortunately, the pain now is mild-to-moderate and much more manageable. The anxiety is what is most concerning right now. I'm starting Buspar 10 mg three times a day for that... and Wellbutrin. Hoping for the best!

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited November 2020 #8
    Hugs. It will get better.

    Hi.  Everything Alice said is great advice.  You really do need to call your doctor and be specific, as you were here.

    I also read your profile... sorry you have been through so much, but I can tell you that you arent alone.

    Im here for my husband who had RCC.  Hope you dont mind me commenting.

    Everytime my husband felt great, it was followed by feeling awful during his recovery.  He still struggles with self regulating of doing too much.  I say that because you had a great week followed by feeling poorly.

    I dont know if you had your Adrenal gland removed or not.  But perhaps your hormones are low.  Cortisol.

    My husband also took Gabapentin.  They finally took him off it because he was exhausted and sleeping long hours like you.  Look up the side effects.  He even fell asleep in the doctors office.  Once off of it, he woke up!

    The same wall hit both of us post surgery.   We were so busy doing what we needed to do...all the appts, arrangements at home, etc..  There was no time to think or consider.  We were in action fight mode.  After coming home is when we were able to let our defenses down, and to let out all the sadness or anger.  Its a process, what you are going through.  You will get through it and enjoy your life again.  But please do talk to your doctor.  Your quality of life is very important.  Be kind to yourself. 

  • AliceB1950
    AliceB1950 Member Posts: 244 Member
    edited November 2020 #9
    I found it helpful to have a

    I found it helpful to have a goal by a certain date. Mine was set for me: I had to start radiation for a different cancer within six weeks of my nephrectomy, because it was timed from surgery I'd had the month before the nephrectomy. So I got out there and walked my **** off because I knew I wanted to do some fun things before radiation started, including taking a short vacation with my husband. And we did it, a car drive about 300 miles away to stay for a few days. Then when we got back, the radiation nurse was bugging me to get started, but I had one more thing planned that was an annual day out with a lot of walking at our favorite historic site. Those were my mental treats before six weeks of getting zapped. I have to admit, the first couple of weeks it was hard to stretch out on that table with my arms pulled above my head, but it got better and it probably helped my healing.  So set yourself a MUCH more fun goal, within the limits of Covid safety.  Then get in shape to do it and enjoy it. 

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited November 2020 #10
    There are no guarantees

    My neph was 18 years ago at a youngr 59. The Neph was the roughest of my Surgeries. I was back water skiing in 11 months though. Had Robotic Prostate 14 months ago with a guy who used 2 Robots and 4 Fellows to do 32 a week (12000 total).Last but not least was an emergency Gallbkadder op this  past New Year's Eve. At 77 I've had it with surgery.

     

     

     

    icemantoo

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    edited November 2020 #11
    I'm glad things are getting better

    I'm sorry you've had to go through this. You are in a good place to get help and advice. I had a full nephrectomy 4 years ago. I think the best advice I got was to walk as soon as you feel up to it and as often as you can. The fears and anxiety are a real thing. I felt and still think that every odd pain is cancer returning. I'll pray that you have peace and are able to move on day by day!

  • eug91
    eug91 Member Posts: 471 Member
    edited November 2020 #12
    welcome duquguy-

    Sorry you had to join us, but congrats on getting through your surgery. It's not easy and you did it, so you did great. 

    As for the dread of it coming back, that's only natural. I have advice that FoxHD gave us-

     

    "We all fear reccurrence

    Don't let it be the anchor that sinks your ship. Know that you have dodged a bullet. Smile, love, and live on!!!! Just stay up to date with all your appointments."

     

    Also from Fox-

     

    "You are going to be hyper aware of every ache and pain for some time to come. Just like everyone. And just like everyone, you'll be ok. Keep a journal of your changes. Sometimes it gets confusing."

     

    You've got this. We're here for you if you have questions or just need to vent or celebrate. 

     

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    edited November 2020 #13
    To Paraphrase Shakespear...

    Get the to a Dr.

    Hopefully, you've at least made an appointment by now.  By three weeks, I was still very weak, but then had to go to ER with nausea, vomitting and diahrrea.  An x-ray to see if any internal surtures had opened, showed that I had pancreatitis. (Cancer had mets to liver, and gall bladder and ducts also removed).  Anti-nausea meds for a week, and then being able to keep food in the gut made a big difference.  By 6 weeks, when I was free to become more active, I started working out in a pool.

    I think every individual is different in how the surgery and recovery go.  There is no blanket answer.  We can give hints and helps, but only a Doc can answere the big ??'s.

    Hugs and good luck,

    donna_lee

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #14
    a_oaklee said:

    Hugs. It will get better.

    Hi.  Everything Alice said is great advice.  You really do need to call your doctor and be specific, as you were here.

    I also read your profile... sorry you have been through so much, but I can tell you that you arent alone.

    Im here for my husband who had RCC.  Hope you dont mind me commenting.

    Everytime my husband felt great, it was followed by feeling awful during his recovery.  He still struggles with self regulating of doing too much.  I say that because you had a great week followed by feeling poorly.

    I dont know if you had your Adrenal gland removed or not.  But perhaps your hormones are low.  Cortisol.

    My husband also took Gabapentin.  They finally took him off it because he was exhausted and sleeping long hours like you.  Look up the side effects.  He even fell asleep in the doctors office.  Once off of it, he woke up!

    The same wall hit both of us post surgery.   We were so busy doing what we needed to do...all the appts, arrangements at home, etc..  There was no time to think or consider.  We were in action fight mode.  After coming home is when we were able to let our defenses down, and to let out all the sadness or anger.  Its a process, what you are going through.  You will get through it and enjoy your life again.  But please do talk to your doctor.  Your quality of life is very important.  Be kind to yourself. 

    Thank you, AO!

    Thank you, AO!

    I certainly do not mind you commenting. I appreciate it! I'm off Gabapentin now, which sounds like the cause of your husband's issue. They didn't take my adrenal gland, but maybe it is changes in hormones. I placed a call into the doctor and they scheduled a virtual consult, but everything is changing in the meantime. I get bouts of energy and then hit a wall. I get about 10-15 minutes of activeness before I crash and need to recoup. A lot of people have said to pace myself, but it's just hard o do so when I'm feeling decent. I guess I need to be kind to myself ...like you said. :)

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #15
    AliceB1950 said:

    I found it helpful to have a

    I found it helpful to have a goal by a certain date. Mine was set for me: I had to start radiation for a different cancer within six weeks of my nephrectomy, because it was timed from surgery I'd had the month before the nephrectomy. So I got out there and walked my **** off because I knew I wanted to do some fun things before radiation started, including taking a short vacation with my husband. And we did it, a car drive about 300 miles away to stay for a few days. Then when we got back, the radiation nurse was bugging me to get started, but I had one more thing planned that was an annual day out with a lot of walking at our favorite historic site. Those were my mental treats before six weeks of getting zapped. I have to admit, the first couple of weeks it was hard to stretch out on that table with my arms pulled above my head, but it got better and it probably helped my healing.  So set yourself a MUCH more fun goal, within the limits of Covid safety.  Then get in shape to do it and enjoy it. 

    This weekend was a bit better

    This weekend was a bit better. My goal is to increase my stamina to be able to be up and about and doing stuff without getting tired. Sounds like I've found a goal. Thank you and I hope you are doing well!

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #16
    icemantoo said:

    There are no guarantees

    My neph was 18 years ago at a youngr 59. The Neph was the roughest of my Surgeries. I was back water skiing in 11 months though. Had Robotic Prostate 14 months ago with a guy who used 2 Robots and 4 Fellows to do 32 a week (12000 total).Last but not least was an emergency Gallbkadder op this  past New Year's Eve. At 77 I've had it with surgery.

     

     

     

    icemantoo

    Iceman,

    Iceman,

    I hope you get a break from the surgeries too. In the meantime, you can be my wingman any day. Wink

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #17
    Deanie0916 said:

    I'm glad things are getting better

    I'm sorry you've had to go through this. You are in a good place to get help and advice. I had a full nephrectomy 4 years ago. I think the best advice I got was to walk as soon as you feel up to it and as often as you can. The fears and anxiety are a real thing. I felt and still think that every odd pain is cancer returning. I'll pray that you have peace and are able to move on day by day!

    Thank you so much, Deanie!

    Thank you so much, Deanie!

    I'm so appreciative of this forum. Reading the posts of others shows me that I'm not alone in how I feel and also normalizes some of my concerns. I received the same advice as you and pushed myself to be up and active as much as I could. I think I just need to build up slower.  I hope you are doing well and managing the anxiety!  ::hug:: 

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #18
    eug91 said:

    welcome duquguy-

    Sorry you had to join us, but congrats on getting through your surgery. It's not easy and you did it, so you did great. 

    As for the dread of it coming back, that's only natural. I have advice that FoxHD gave us-

     

    "We all fear reccurrence

    Don't let it be the anchor that sinks your ship. Know that you have dodged a bullet. Smile, love, and live on!!!! Just stay up to date with all your appointments."

     

    Also from Fox-

     

    "You are going to be hyper aware of every ache and pain for some time to come. Just like everyone. And just like everyone, you'll be ok. Keep a journal of your changes. Sometimes it gets confusing."

     

    You've got this. We're here for you if you have questions or just need to vent or celebrate. 

     

    Just like everyone

    Who would've thought that such words would become so comforting? I appreciate you and your support!

  • duquguy
    duquguy Member Posts: 14 Member
    edited November 2020 #19
    donna_lee said:

    To Paraphrase Shakespear...

    Get the to a Dr.

    Hopefully, you've at least made an appointment by now.  By three weeks, I was still very weak, but then had to go to ER with nausea, vomitting and diahrrea.  An x-ray to see if any internal surtures had opened, showed that I had pancreatitis. (Cancer had mets to liver, and gall bladder and ducts also removed).  Anti-nausea meds for a week, and then being able to keep food in the gut made a big difference.  By 6 weeks, when I was free to become more active, I started working out in a pool.

    I think every individual is different in how the surgery and recovery go.  There is no blanket answer.  We can give hints and helps, but only a Doc can answere the big ??'s.

    Hugs and good luck,

    donna_lee

    Thank you, Donna.  ::hug::

    Thank you, Donna.  ::hug::

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    edited November 2020 #20
    eug91 said:

    welcome duquguy-

    Sorry you had to join us, but congrats on getting through your surgery. It's not easy and you did it, so you did great. 

    As for the dread of it coming back, that's only natural. I have advice that FoxHD gave us-

     

    "We all fear reccurrence

    Don't let it be the anchor that sinks your ship. Know that you have dodged a bullet. Smile, love, and live on!!!! Just stay up to date with all your appointments."

     

    Also from Fox-

     

    "You are going to be hyper aware of every ache and pain for some time to come. Just like everyone. And just like everyone, you'll be ok. Keep a journal of your changes. Sometimes it gets confusing."

     

    You've got this. We're here for you if you have questions or just need to vent or celebrate. 

     

    Sure miss Fox

    Thanks for keeping his wisdom alive here?

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