I haven't really written about my recovery period thus far because well, it has sucked and I haven't been in the mood until, well, right now. I started writing this before midnight, and have been distracted here and there, so when I say today/yesterday...the day will be slightly off, just FYI.
Two operations in two years is enough for a lifetime. I'll be so so so happy if I will never have to be in the hospital ever again. Ever ever.
My surgery went well. From what I understand, the tumor was quite easy to see and take out. I don't know how much tissue they took out around it. I also know that the nerve the tumor was sitting on has DIED but I don't know what that means for me.
I was not in the hospital for long, thank GOD. It was miserable. First of all, they shove medicines down you all at once, not taking into consideration ANYBODY'S medication schedule. I still can see the little cup full of all my medications at one time and want to cry. My roommate (an old woman who fell and really cut up her leg) vomited her guts out the first morning we were there since she was made to her take her medications without food. And I had to hear her SEVERAL TIMES protesting one of her medications because it was something given to her so she could take it ONLY (and immediately) after her dialysis treatment. But since the doctor ORDERED IT, they wanted her to have it. Thank goodness she had a voice. Or I was going to jump in.
But because I had to take all my medications + oxycodone (once I was released from my epidural on Thursday- my surgery was Tuesday), I wanted to vomit. I also had to take this stool softener since my surgical team cleared me to eat. THAT was a nightmare! I of course had no food on Tuesday or Wednesday. Thursday I was on clear liquids all day. The morning meal (jello, broth, tea, and two juices- apple and cranberry- and they are like EXTRA SWEET versions or something- they made me ill too) wasn't so bad since it was my first meal since Monday. But then I got it again for lunch. (though I will say one of the PCAs was really nice because she saw my disgusted expression as I ate orange jello and she brought me a red kind- much better) And by the time I got it for dinner I cried. And cried and cried and cried. And then I found out what the next step was- full liquids (made with milk based things), and then I flipped out. The poor pain doc who came to take out my epidural (they had turned it off, but it was still in my back) got the brunt of it all. He asked how I was and I told him. In a sort of freak-out tone. Oh well.
They were talking about releasing me on Friday, yet keeping me on the same diet, not advancing me at all (hospital administration things are REALLY damn slow, not the nurses fault, I know, I know, but holy GOD), and how was I going to get better? It's such shit. Had I had a release date of Saturday or Sunday, OK, maybe, but to keep me on clear liquids ALL DAY and then release me , expecting me to tolerate food just fine was really infuriating.
My medications were making me sick because I HAD NO FOOD IN MY BELLY. It was really just a lose-lose situation. And that stool softener meds I was put on? It was a liquid medication and I was nauseated all day every day from Thursday to Monday night. I stopped all my meds after that until my NF doctor called, and even though I had complained about the nausea to another person who had called to check up on me, he prescribed me Zofran and that saved my life. The best part about the hospital (besides the nurses who cared for me, ESPECIALLY THE ONES IN MY RECOVERY ROOM) was the PET THERAPY I HAD! (oh and the call from my primary care doctor- she is really the greatest person who exists on this universe).
I was surprised I even got pet therapy. On my morning walk down my 'ward' on Thursday, I saw a sign that said the floor participated in Pet Therapy every Tues/Thurs, and to make sure to our tell my nurse in the early AM if we wanted it. Well, it was 11:30 am and I went to the nurses station and asked, and they told me it wasn't going to happen that day. So imagine my surprise when somebody came in asking for me since it was Pet Therapy time! (I didn't even tell the desk my name so somebody must have known me....). I had a Portuguese Water Dog. ADORABLE!
The worst part about the hospital, besides the food and the slowness of advancing people, and just the total disregard for a medicine schedule were the SMELLS. I don't know, but there was some smell that my nurses had- the same smell that permeated my sheets- it was so gross. And then it was in my hair. That really exacerbated my nausea. When I was told I could go home on Friday, I was cleared to take a shower, and I usually love the smell of my shampoo, but I couldn't tolerate it and i still can't tolerate it much anymore! It smells different to me. Lots of things smell and taste different to me now. it sucks!
So recovery has been hard. There is so much pain in the muscles surrounding my incision area. I feel like I have a knot on my left ovary. I've been on a weird new period since they took the folley (pee catheter) off. As i said, Zofran saved my life. I dropped down to 92 lbs since I really haven't eaten anything since yesterday (Tuesday). I can finally look forward to food now (when before I couldn't even think of it). I never vomited but I did spit up a lot of reflux. I think it's because I had nothing in my belly to puke. And believe me, coughing and the need to spit up REALLY HURTS. So does sneezing. Yes, I miserable, but I feel like there's a light at the end of the tunnel!
I refuse to take any of my pain meds (I was released with a prescription of oxycodone) but because I associate pain meds with nausea, I am so scared it will ruin the effects of the Zofran. So. It sucks.
I am walking a bit more now that I have a cane. The cane helps me balance myself and not walk so hunchbacked. I take stool softeners in PILL form, and at least that doesn't make me sick.
I had blisters that grew on the right side of my abdomen thanks to the tape that covered my incsion area right after my surgery. I had a big one and small one. The big one burst and the area has been in pain since (though it has gotten better). I made the nurse pop the other one. I have a large scab now where the other blister was. I'm just so sore. And when I wake up, I hurt and sometimes I hurt AND am nauseated. Fuck it all.
I wanted to get right back working but I haven't been able to sit up most of the day. Now that Zofran is in my system, I should be better, but it has REALLY set me back!
John is taking such good care of me. While he's taking care of me, he's working on his dissertation AND his lectures for a class he's teaching in the fall. He does errands for me (recently had to run to my place of employment because I didn't sumbit my timesheet on time- my boss took care of that early this week, but because of that, the T pass I ordered through them didn't go through my paycheck and it had to be paid pronto or it would have been cancelled)- so he went and got that fixed. He bought my cane and buys me whatever new medication I need. He brings me whatever food I want to eat. And me makes me move. He's great. :)
Trying to get ready for my semester. I got all of my books and now I need to start reading. Thinking of when it will be a good time to pull the plug on Facebook (temporarily).
That's all.
Two operations in two years is enough for a lifetime. I'll be so so so happy if I will never have to be in the hospital ever again. Ever ever.
My surgery went well. From what I understand, the tumor was quite easy to see and take out. I don't know how much tissue they took out around it. I also know that the nerve the tumor was sitting on has DIED but I don't know what that means for me.
I was not in the hospital for long, thank GOD. It was miserable. First of all, they shove medicines down you all at once, not taking into consideration ANYBODY'S medication schedule. I still can see the little cup full of all my medications at one time and want to cry. My roommate (an old woman who fell and really cut up her leg) vomited her guts out the first morning we were there since she was made to her take her medications without food. And I had to hear her SEVERAL TIMES protesting one of her medications because it was something given to her so she could take it ONLY (and immediately) after her dialysis treatment. But since the doctor ORDERED IT, they wanted her to have it. Thank goodness she had a voice. Or I was going to jump in.
But because I had to take all my medications + oxycodone (once I was released from my epidural on Thursday- my surgery was Tuesday), I wanted to vomit. I also had to take this stool softener since my surgical team cleared me to eat. THAT was a nightmare! I of course had no food on Tuesday or Wednesday. Thursday I was on clear liquids all day. The morning meal (jello, broth, tea, and two juices- apple and cranberry- and they are like EXTRA SWEET versions or something- they made me ill too) wasn't so bad since it was my first meal since Monday. But then I got it again for lunch. (though I will say one of the PCAs was really nice because she saw my disgusted expression as I ate orange jello and she brought me a red kind- much better) And by the time I got it for dinner I cried. And cried and cried and cried. And then I found out what the next step was- full liquids (made with milk based things), and then I flipped out. The poor pain doc who came to take out my epidural (they had turned it off, but it was still in my back) got the brunt of it all. He asked how I was and I told him. In a sort of freak-out tone. Oh well.
They were talking about releasing me on Friday, yet keeping me on the same diet, not advancing me at all (hospital administration things are REALLY damn slow, not the nurses fault, I know, I know, but holy GOD), and how was I going to get better? It's such shit. Had I had a release date of Saturday or Sunday, OK, maybe, but to keep me on clear liquids ALL DAY and then release me , expecting me to tolerate food just fine was really infuriating.
My medications were making me sick because I HAD NO FOOD IN MY BELLY. It was really just a lose-lose situation. And that stool softener meds I was put on? It was a liquid medication and I was nauseated all day every day from Thursday to Monday night. I stopped all my meds after that until my NF doctor called, and even though I had complained about the nausea to another person who had called to check up on me, he prescribed me Zofran and that saved my life. The best part about the hospital (besides the nurses who cared for me, ESPECIALLY THE ONES IN MY RECOVERY ROOM) was the PET THERAPY I HAD! (oh and the call from my primary care doctor- she is really the greatest person who exists on this universe).
I was surprised I even got pet therapy. On my morning walk down my 'ward' on Thursday, I saw a sign that said the floor participated in Pet Therapy every Tues/Thurs, and to make sure to our tell my nurse in the early AM if we wanted it. Well, it was 11:30 am and I went to the nurses station and asked, and they told me it wasn't going to happen that day. So imagine my surprise when somebody came in asking for me since it was Pet Therapy time! (I didn't even tell the desk my name so somebody must have known me....). I had a Portuguese Water Dog. ADORABLE!
The worst part about the hospital, besides the food and the slowness of advancing people, and just the total disregard for a medicine schedule were the SMELLS. I don't know, but there was some smell that my nurses had- the same smell that permeated my sheets- it was so gross. And then it was in my hair. That really exacerbated my nausea. When I was told I could go home on Friday, I was cleared to take a shower, and I usually love the smell of my shampoo, but I couldn't tolerate it and i still can't tolerate it much anymore! It smells different to me. Lots of things smell and taste different to me now. it sucks!
So recovery has been hard. There is so much pain in the muscles surrounding my incision area. I feel like I have a knot on my left ovary. I've been on a weird new period since they took the folley (pee catheter) off. As i said, Zofran saved my life. I dropped down to 92 lbs since I really haven't eaten anything since yesterday (Tuesday). I can finally look forward to food now (when before I couldn't even think of it). I never vomited but I did spit up a lot of reflux. I think it's because I had nothing in my belly to puke. And believe me, coughing and the need to spit up REALLY HURTS. So does sneezing. Yes, I miserable, but I feel like there's a light at the end of the tunnel!
I refuse to take any of my pain meds (I was released with a prescription of oxycodone) but because I associate pain meds with nausea, I am so scared it will ruin the effects of the Zofran. So. It sucks.
I am walking a bit more now that I have a cane. The cane helps me balance myself and not walk so hunchbacked. I take stool softeners in PILL form, and at least that doesn't make me sick.
I had blisters that grew on the right side of my abdomen thanks to the tape that covered my incsion area right after my surgery. I had a big one and small one. The big one burst and the area has been in pain since (though it has gotten better). I made the nurse pop the other one. I have a large scab now where the other blister was. I'm just so sore. And when I wake up, I hurt and sometimes I hurt AND am nauseated. Fuck it all.
I wanted to get right back working but I haven't been able to sit up most of the day. Now that Zofran is in my system, I should be better, but it has REALLY set me back!
John is taking such good care of me. While he's taking care of me, he's working on his dissertation AND his lectures for a class he's teaching in the fall. He does errands for me (recently had to run to my place of employment because I didn't sumbit my timesheet on time- my boss took care of that early this week, but because of that, the T pass I ordered through them didn't go through my paycheck and it had to be paid pronto or it would have been cancelled)- so he went and got that fixed. He bought my cane and buys me whatever new medication I need. He brings me whatever food I want to eat. And me makes me move. He's great. :)
Trying to get ready for my semester. I got all of my books and now I need to start reading. Thinking of when it will be a good time to pull the plug on Facebook (temporarily).
That's all.
Honestly Jen, you are a much, much stronger person than I. Not only can I not imagine going through this, but if I had to I would be an absolute BEAST to everyone around me. Best of luck with your recovery and can't wait to see you in November!
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