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A month after surgery

duquguy's picture
duquguy
Posts: 14
Joined: Nov 2020

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.

AliceB1950's picture
AliceB1950
Posts: 116
Joined: Jun 2019

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's picture
duquguy
Posts: 14
Joined: Nov 2020

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's picture
Canadian Sandy
Posts: 709
Joined: Jul 2016

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

duquguy's picture
duquguy
Posts: 14
Joined: Nov 2020

Thank you, Sandy! ::hug::

Hd67xlch's picture
Hd67xlch
Posts: 152
Joined: Apr 2016

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's picture
duquguy
Posts: 14
Joined: Nov 2020

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
Posts: 567
Joined: Nov 2013

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. 

duquguy's picture
duquguy
Posts: 14
Joined: Nov 2020

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. :)

AliceB1950's picture
AliceB1950
Posts: 116
Joined: Jun 2019

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. 

duquguy's picture
duquguy
Posts: 14
Joined: Nov 2020

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!

icemantoo's picture
icemantoo
Posts: 3336
Joined: Jan 2010

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

duquguy's picture
duquguy
Posts: 14
Joined: Nov 2020

Iceman,

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

Deanie0916
Posts: 403
Joined: Nov 2016

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!

duquguy's picture
duquguy
Posts: 14
Joined: Nov 2020

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:: 

eug91's picture
eug91
Posts: 317
Joined: Jan 2019

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. 

 

duquguy's picture
duquguy
Posts: 14
Joined: Nov 2020

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

Deanie0916
Posts: 403
Joined: Nov 2016

Thanks for keeping his wisdom alive here💕

donna_lee's picture
donna_lee
Posts: 1005
Joined: Feb 2009

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's picture
duquguy
Posts: 14
Joined: Nov 2020

Thank you, Donna.  ::hug::

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