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Help, going to surgery!

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

Hello everyone, very glad to have found this website.  Well done to you all!   I wish to just brief my situation with hopes to get a few replies.

 

I am due for surgery next week, full nephrectomy and now possible lymph node removal.   I was diagnosed over a year ago, but due to the complexities of other extremely serious conditions the surgery was cancelled 3 times. This is the fourth attempt, and being as the mass has grown, has been diagnosed as a possible cystic renal cell carcinoma  (and has now invaded the par-aortic lymph node)  time is of the essence.  I cannot say I am not in a state of sheer panic, surgery has great complications for me more than most and the fragility of my body, presently, concerns even the surgeon and my specialists.  There is little choice, either way.  I have not felt so lost and utterly alone as I do in this, and yet I have been through major health challenges for many years but this really does create a new sense of unease and uncertainty.  Does anyone have any practical advice, comfort or reassurance to offer.  I have been wanting to write but what on earth do I say, I fear my inner turmoil has distinguished my normally warm continence.  I also run my own business, it is my sole income, I do worry that after surgery I might be slower than I need in recovery. 

 

I do thank you for any support here.  Only a few days to go!

icemantoo's picture
icemantoo
Posts: 3304
Joined: Jan 2010

amber,

 

We all felt apprehensive when we went into surery. Youare at least 10 years younger than I was at the time. Sending good karma your way.

 

 

Icemantoo

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

Icemantoo - I realy do value your comment, it seems you have recovered and survived very well. A good thing indeed. 

Ceppo49
Posts: 2
Joined: Jul 2017

wish you the best, had nephrectomy may 19, cannot give you any advice except stay the course with your surgeon and specialists!

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

I hope you are recovering well?  I am so grateful for your words.  Was it that terrible?   Healing to you!

Ceppo49
Posts: 2
Joined: Jul 2017

Recovery went well. Had great Doctors!

APny's picture
APny
Posts: 1994
Joined: Mar 2014

So sorry you have to be here. I totally understand the panic but I can honestly say my anticipation, fear, and imagination were a lot worse than the actual surgery. Mine was a partial but open neph and my recovery was much better and easier than I had feared. I'm hoping that yours will be too. I realize your business is your sole income but try not to rush things. It does take a while to feel back to "normal" whatever that is. Your energy levels will be lower than previously and you'll tire more easily. At least I did. My advice is to walk as quickly as possible after the surgery and to use the breathing apparatus they give you to keep your lungs clear. Walking really does help in not only your recovery but also your state of mind. Wishing you the very best and try not to let your imagination get the best of you. It won't be nearly as bad as you fear.

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

Treasured words, I am so grateful to read them.  The fear can take over, I have to breath and visualise a positive outcome, not as easy in the dark of night.   Yes, I will walk, I am a walker and shall do all in my own power to regain strength.   I will be glad when it is all in the past.  May I ask what the " breathing apparatus" consisted of please? Why was it needed?

APny's picture
APny
Posts: 1994
Joined: Mar 2014

The breathing apparatus really helps to a) increase your lung capacity and b) keep your lungs and bronchial passages clear, especially after being under anesthesia. They gave me mine prior to the surgery and I used it religiously. And of course afterwards. If they haven't given you one ask for it. I think it's called a spirometer.

Yes, the dark of the night is the worst time for our imagination to run away with us. Perhaps you could talk to your physician about taking a low dose Xanax or other anti-anxiety meds to get you through. They really helped me. Or if you prefer natural, camomille tea before bed.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

My Surgery was in April. The wait was awful for all the fears and what ifs. The post op recovery wasn't as bad as I had imagined but was not easy either. I would recommend to have as much support lined up before the procedure. Family,friends, co-workers..the first week your the weakest. You can't have enough help. There are many Posts here that address the surgery and there is a wealth of information try and read past posts. If you need further info just ask we were all in your position your not alone. 

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

That was very real advice.  I do take note of your words. May I ask what the worst part was for your post op experience?   I do hope you are doing well. 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Amber,

The best advice post-surgery is to walk and chill, then walk some more. You got this.

We're here, too. Keep us posted as you're able. 

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

I really do appreciate your words. Laughing

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

so lie back and let the professionals do their job. Do as you are told. Your job is to be a good patient. Pay attention and learn what you need to know to have a great future.

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

I shall. Encouraging words, thank you.  I shall be the best "English" patient (I'm British!) and allow God to work through them. 

donna_lee's picture
donna_lee
Posts: 984
Joined: Feb 2009

but was afraid of the death sentence they had offered at diagnosis, as in 5-7 months if the kidney and all the other mets could not be removed.  It was already taking over half my liver and affecting it.  You can read the rest by clicking on my user name.

The surgeons and nurses will do their jobs to take care of you in hospital. The inspirometer is a piece of cake.  There could not be a better phrase than to say, "suck air."  Imagine the carnival strong man contest who hits a button with a sledge hammer and makes the gong ring at the top.  Your goal is to put a mouth piece in your mouth and inhale to make a little disk rise in a plastic tube.  You'll wake up sore, hungry, and tired.  And you'll get better.  This is when your body will talk to you; 3-4 days forward, and maybe a day backward; rest; and do it again.  And guess what, the turtle wins the race with steady but sure steps. 

You will Too! Put a sachet of lavendar in your pillowcase when you get home; it'll help you rest.

All best wishes and Hugs across the Pond.

donna_lee

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

You really are the best Dona_Lee. I really value your words. I too am a strong force at my core, but we all are merely human. I have faced many enourmous physical challenges,  but.....this too shall pass! Thank you very much. I relate to your story too, adversity does change us.  I shall be writing once I get this done. I saw my surgeoun yesterday, he is a good Man, all set for the task in hand. I just want it over. This is my count down period, balancing my work, slowing it down and getting things prepared for wednesday. 

Mighty Frog's picture
Mighty Frog
Posts: 151
Joined: Jul 2017

Hi! Well is good to get a second opinion. But so far I see... still the best option is surgically remove it. And change your lifestyle to a healthy diet one

I will be having my LPN today noon. 

 

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

I do pray that you are doing better than well. Let us kow how you got on.  I really do appreciate your words.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

What everyone else said.  I was a blubbering mess 3 days before the surgery.  That was 3 years ago.  I laugh at myself today for being that way.  But for the first time in my adult life, I was really scared.  It's natural.  Scared turns to calm on surgery day, turns to recovery, turns to relief. 

 

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

Excellent words, very encouraged. I too cannot wait to be looking back on this time and feeling as you do now.   Relief!

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Yes it is okay to be scared and uncertain, but DO NOT do not dwell on this. You WILl get through this time. 

First surgery? Things no one tells you:

Surgeon uses this GAS to raise your abdominal wall so he/she can SEE.  It gets trapped in places in your body, like in your shoulder. Its not pathological, just trapped and that hurts. For me, ( I have had 4 abm surgeries) its painful, but knowing its benign and not that something is wrong helps.

ICE incisions/esp over the largest one which still is relatively small if you have a laproscopic surgery. i had to BEG to get ice, so the only person who got me ice was the PT therapist who took a glove and packed ice cubes in it.

ICE reduces the swelling=less pain!! I used dry ice packs once home and put it inside my lumbar wrap but over my underwear. It helped tremendously.

LUMBAR WRAP used for back pain. I have used it for any area I have sore, or spasming muscles. It helps you get UP from sitting or laying down. Wore it to be first week. Helped a lot!

Yes, you will be tiried, your insides are healing. DO NOT RUSH this healing.

You may start to feel better week 2 or after, and may want to do more than you are ready for.

Told NOT to exercise, even on my Gazelle, for 30 days. YOU ARE HEALING inside.

Pain meds constipate you. So drink water and foods with fiber and wean off best you can as soon as you can. 

You may end up anemic. i had to beg my surgeon to test me and sure enough I was anemic. (not all will be though) SLOW FE is found over the counter. Built up my system helped me regain strength and fight fatigue. 

Any other questions, I will be glad to help. 

Again, we're here for you. And.. you WILL GET through this like a trooper!

Sending you calm, serenity with healing hugs, 

Jan

ambersorganics's picture
ambersorganics
Posts: 11
Joined: Jul 2017

Jan, I really DO appreciate all of your information. It is almost my time and as it closes near I value all the words and support I can get. Yes, I do take note of everything you said, I shall use common sense and innder wisdom to get through this ( trusting God above all)   I am not feeling that physically good at all, complexities of other condtions but I am hoping once the cancer is out life will take on a new and positive shape.  I thank you again and shall let you know how it goes.  See you soon!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

The first few weeks post-op were the worst for me, more because of the weakness than the pain in my case.  Follow Jan's advice about the lumbar wrap.  It really helped me a lot (altho I wasn't on this site till a few years after my surgery).  Wish I'd found this site much sooner, it's been such a source of inspiration and knowledge.  I had hauntings after my surgery with every ache & pain, especially around the anniversary of the finding.  By the third year my husband had suggested finding a blog or seeking counseling.  I did both, although I only went to a counselor twice but this site has been  the best therapy I could ask for.  Everyone here knows firsthand exactly what I'm talking about or feeling or experiencing and that's invaluable.

I'll keep you in my prayers and please keep us posted on your outcome.  God Bless,

Donna~

 

Deanie0916
Posts: 368
Joined: Nov 2016

I agree wih all of the advice above and expecially walk as soon and as often as you are able. Healing prayers to you, Ambers

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