What was your single most painful cancer experience?

[MitchellVII]

Cancer is horrible. On that we can all agree. Every one of us has had a different journey with it, some far worse than others. I personally have had half my colon and 32 lymph nodes removed, but I have not experienced the horrors of Stage IV Chemo/Radiation and for that I am thankful.

The point of this thread is just to let everyone vent and share what for them was their single most painful experience with this disease. Some will be able to relate and thus find comfort in knowing others have been there and survived. Others will read about events far worse than anything they ever personally experienced and find comfort knowing as bad as it is, it could have been far worse.

MY MOST PAINFUL EXPERIENCE:
After my surgery I came out of anesthesia almost immediately in the recovery room. Due to a DVT in my leg, they did not give me an epidural and just placed me on a morphine drip. Unfortunately, I came out of anesthesia about 30 minutes before the morphine took effect. To describe these 30 minutes as "a living hell of burning agony" would be close.

I think I now know how William Wallace felt when he was drawn an quartered alive in the public square.

To make matters worse, I said to my nurse to please do something for me because I was in terrible pain. She answered me in this heavy New York accent and said, "well you just had major surgery, what do you expect?" (Nice huh?)

[wwroam]

For me, the day after surgery." We're getting up for a walk." ( I didn't have some tiny little cut. My surgeon liked to use the steel. I had a 15 inch incision.

[janey]

I keep reading how some of you were up and walking the next day after surgery and that I can,t understand. I was opened up from braline to bikini line, in intensive care for 4 days and then spent another 12 days in hospital. I think it was on the 5th day they tried to stand me up. The pain from the surgery was out of this world. How some of you walked amazes me. Just to go to the bathroom to wash I had to be helped by 2 nurses I,d say up untill about the 7/8th day. I can remember clinging on to a handrail in the bathroom,holding myself up with every strength in my body really thinking I was going to die never mind ever being able to stand up straight again. I had tubes coming from all directions. I was on a morphine pump but not one I could regulate myself. The pain was the worst thing I have ever experianced in my life,I couldn,t go through that again.
Janey

[MitchellVII]

Yes,

The incision size and location seems to be completely random and up to the surgeon. I asked to have mine horizontally so I got it, from my navel to my right side, about 8 inches. Then I see the stem to stern version and think wow, that surgeon really likes making big scars.

Yesterday I read about someone who had their surgery done with a small incision and the scopes and their biggest scar was JUST TWO INCHES! I want THAT ONE! Lol, in my case, my tumor was as big as a tennis ball and they took 32 lymph nodes, so I don't know if laproscopic was an option .

If anything, my scar will motivate me to stay lean and ripped. The scar is MUCH less noticeable on a flat belly. If I get chubby it will look horrible.

ON "WALKING":
Oh yeah, they kept saying they wanted me to "walk" 3 times a day. I think on my first "walk" I could have won a face-making and swearing contest at the same time. And don't even get me started on when I drank some water and started to choke. Thank God I never had to sneeze - I can't imagine!

[janey]

Mitchell, I started vomiting the next morning in intensive care because the tube in my nose wasn,t working peoperly, I thought everything was going to rip wide open. Funny thing is it wasn,t untill 5 days later when they came to redress the wound that I discovered how large it was. I thought it was going to be a little 2 inch thing. Couldn,t work out why my tummy was so heavy and I coudn,t move....untill I saw all the packing... the surgical clingfilm holding everything together....oh yea and the 50 plus staples.
Janey

[MitchellVII]

janey,

Yeah it seems like some surgeons give little thought to the future aesthetics of a wound. Mine would have not been so bad except I had an abcess and the right 4 inches of it has had to do the "pack and slowly heal back thing, which has left a deeper line in the wound than would have been otherside.

I may seek plastic surgery once it has totally healed to see if they can make it lessnoticeable.

[GO BLUE Girl]

Michele, Finding out that I HAD IT Beth

[seussfan]

Most painful for me - sneezing, coughing, and laughing. That freakin' hurt! Other than that, being told I had cancer was the most painful for me.

[bigG]

I had the driest mouth in the south. I couldn't drink any liquids before the surgery. And it was about two days after the surgery that I finally got ice chips. The nurses in ICU would swab my mouth with a small sponge. Which only kept my mouth wet for a few minutes. And on top of the dry mouth, no food.

Having a dry mouth for two days was brutal.

bigG

[MitchellVII]

Actually, being told I had cancer wasn't that bad for me in a weird way. Due to my hyper-anemia (7.1) and a natural tendency towards panic attacks and depression, I had gotten VERY down for about the 3 years prior to being diagnosed.

My successful business had failed (couldn't work for more than half an hour without getting very sleepy or having horrible sciatica - side effect of colon cancer I am told). On top of that, I just felt basically rotten all the time. I had seriously considered suicide a number of times but never followed through with it.

So when I found out I might die, I actually was like "ok, I'm tired of life anyway - I've seen and done enough - I'm ready to go". Now that my hemoglobin is getting back to normal (11.6 up from 7.1) I am feeling better and thinking clearer than I have in years. I actually have hope for the future but I've dug such a deep hole for myself, it will be tough.

I am guessing my hospital bills will be well over $100,000 for which I have no insurance (trying for Medicaid) and I owe the IRS $300,000 in back taxes. Still there are ways to work around all this and if I can get back to my old self, anything is possible.

[Kandy]

My last surgery was my most painful. I'd had lung surgery in Oct/07 and had my first epidural that worked quite well so I asked for that again for the exploratory surgery to find a tumor in the vicinity of the sigmoid. Had the largest incision I've ever had (each are getting bigger-3" the first time, 6" the 2nd time and 9" this time). This was my 4th abdominal surgery. They put the needle in place for the epidural before surgery. When I awoke in the recovery I was in alot of pain; asked for more pain meds and the nurse told me they were moving me to a room so she disconnected everything called for transportation and left. I started yelling for more meds after a while and I heard from a distance "take a nap and you won't feel as much pain". I continued to try getting their attention without success until the patient in the bed next to me asked the doctor who came in to see her if he could get me some help. When he look into it and found out what state I was in he raised hell. He did get me some pain meds, but it took them an hour to get my vitals stabilized before they could move me to my room. When the meds that doctor gave me wore off, the pain was back and the nurses did not know I had an epidural so I still was not getting anything for the pain. When they finally looked at my chart that said I was suppose to get an epidural pump, they didn't have any available. I went from 8:30 pm to 1 pm the next afternoon before they got the epidural hooked up to a pump. This upset my surgeon so much that he will no longer allow epidurals for his surgeries. I'm not in any hurry to have another surgery and if I have to have any more, there will be family at my side in recovery-- to a room to be sure everything is done properly.
Kandy F.

[MitchellVII]

Kandy,

I guess that one qualification to be a nurse in surgical recovery is to be a total b**** from hell. I think they get trained in emergency rooms. I have met some heartless she-devils there as well. When I complained of the terrible pain I was in, my nurse basically told me that I had just had major surgery so what did I expect. Frankly my dear, she didn't give a damn.

Kandy, it sounds to me almost like you have grounds for a malpractice suit. I would look into that if I were you. There is no way a responsible medical hospital should have allowed you to experience that pain due to their incompetence.

One other thing they do is give everyone the same amount of pain meds. I am 6'4", 230 lbs and I was getting the same meds as a 5'2", 110 lbs woman.

[Joy]

Evening after my surgery I was in "real" pain. Finally a nurse took my vitals and saw that my pulse, etc was way out of whack. She asked me on a scale of 1 to 10 how is your pain...I said 50 and she laughed. She said wait a sec your bed is wet (holy sh*t) your epidural pain line has come out you have been getting NO PAIN MEDS.......Ah duh I told you I was in pain. They immediately called the "pain management team and they gave me lots of "happy juice".

It was noted on my chart that I had a "remarkable tolerance to pain" and that I was to be monitored carefully

On another note my surgeon is an "artist" my scar (12 inches) is a bikini line and is almost invisible . He is a colon-rectal specialist and he is head of surgery at a teaching/research/university hospital. I had a LAR (very low in the sigmoid) and I give all my thanks to him for doing a wonderful job of saving my "functions".

LAR January 2006
2 out of 19 nodes
Rectal Cancer stage III

I

[AugustWest]

Janey -

i wasn't up & walking for 3 days after my surgery.

Mitchell -

I'd say the worst for me was me was 2 days after getting home from the hospital, I started vomiting...and continued....and continued until i was readmitted back into the hospital the next afternoon. My body was doing it's damnest to purge *everything* from my newly routed digestive system. Right before agreeing w/ my wife that I had to go back in (if for nothing else but to get rehydrated) I saw myself in the mirror and got real scared. It didn't look like me - i was already down to approx. 140something lbs when i was released, I purged another 10 lbs from vomiting in less than 24 hrs.

> interesting that you "asked" for the incision to be made horizontal instead of vertical. Didn't know that some patients even had an option in this regards. Good for you.

I feel very blessed that i had a great knife man (surgeon). My incision was 10 inches (what do guys call what ladies call the bikini line? ) from below the belt to my rib cage. Parts of the scar are actually non-visible now - so today it's like a dotted line. Weird how sometimes the scar "rises up" once in a while - to where it feels like it raised up a few mm's.

[AngelaW]

Getting the drain pulled out after my last LAR. I wanted to die, and I have a high treshhold for pain.

After the last year and a half, I am S-I-C-K of needles as well!!!