Hi everyone, first post ever on a forum site so please bear with me.
I am/was a single "healthy"(or so I thought) male of 55 years never smoked not overweight good diet ,moderate social drinker etc.
I was diagnosed with RCC back in Jan/feb with a 4cm Cancer tumour in my left Kidney.
This was found due to a scan which I had for a Liver cavernous Hemangioma . That's another topic in its self which does not belong here I guess.
It was one thing being told of the liver problem but to be hit several weeks later with the news I have cancer was a double whammy.
I underwent a partial Nephrectomy on the 16th March ,a date I will never forget. It was done with the Da Vinci Robot. The surgeon was fantastic however the after care in a "top" London Hospital was appalling to say the least. My family found the money to pay for this operation due to the fact the tumour was growing and we could not seem to get a date soon on the NHS. I wont name the Hospital on this public forum but im sure the treatment in an NHS from what I have experienced would have been far better.
I would like to ask those of you that have had major surgery ,is it normal for the patient after the surgery to be told to climb from the operating bed/trolly on to the hospital bed with drains,tubes,catheter attached? That was what I was told to do straight after the operation back in my room.
The next day the catheter stopped working because a nurse decided to strap one to my leg rather than leave the bottle on the floor. and it seemed to cause a vacuum , The kidney drain came out and had to be replaced, Blood seemed to flow back up the Morphine tube! The drain bag was put in bed with me at one point and seemed to have collapsed like a punctured football. How can anything drain into a bag like that? This was my first visit in Hospital and I could go on an on about my stay. It just seemed to lack professionalism . Day staff ok but the nights were quite frightening to say the least. Quite what would have happened in an emergency I don't know. Someone was ment to come in and show me how to get in and out of bed and what gentle exercises I needed to do ,a physio I guess? But never saw one.! No one seemed to be in charge.Dreadful place.
I am 11 weeks post operation and as per my heading , I am still in loads of pain in my stomach area.I cannot lean forward to put a left sock on without it feeling like someone is putting a knife through my belly lower region. My chest is tight and there is a burning sensation most of the time. The areas where the incisions all six of them are sore and swollen.My stomach is still bloated even with 10 lbs weight loss. I can only just drive as it was too painful to press the clutch down. I cant even open my garage door,its up and over and too heavy. My ribs at the ends hurt. Constant aching . I can walk and stand but sitting down and getting up again really hurts. Its like something is tearing in my stomach or something has been stitched to something that needs to move freely. Anything which squashes the stomach towards the thighs caused a lot of pain.
After several visits to the
The GP suggested they might have left an instrument in side me! So I was x rayed and told I was very constipated and that was causing the problems. That was about 6 weeks ago now.
Another x ray and its not really showing anything. I think I am waiting for a CT scan,the GP has written to the surgeon but still not heard anything.
I cant wear trousers or jeans if I have to sit down without undoing them because its agony on the places where the incisions were. It seems to be worse where the drain was which is interesting.
Its trakky bottoms for most of the time which is so not me.
Now the operation is over and im still alive ,friends seem to have all dispersed, with the theory and attitude "well you don't have cancer anymore its been taken away" All over ...move on ! If only they knew half of it. And if I had a £ for every time someone said "im there for you if you need me" what a load of old tosh! Talk is cheap ,very little action when you really do need help. Please tell me im not the only one who thinks this or experienced this?
So I am at my wits end ,I am unable to work anything other than some computer work but after a while its to uncomfortable to sit at a desk because the stomach is squashed .
Tasks like bending down to pick up a towel or even standing at the wash hand basin leaning forward to wash my face is painful. This should not be the case after 11 weeks post surgery. I followed the instructions of the surgeon after the operation ,two short walks per day ,keep moving around.
I feel so much is wrong inside me and I cannot get any one in the medical profession to give me an answer as to what the problem is . I keep asking ,getting appointments ,being prodded and examined but still no answers. I cannot continue to live like this . Im even told i need counciling ! I just need to feel normal again or at least feel like im improving day to day. I feel like a Frankenstein experiment..I am at the end of my tether feeling so rotten all the time day and night.
No one has any answers.
I have read on here some peoples experience with this operation of virtually being house bound still after about a year and I can fully understand and sympathise
I really think as patients we should be made more aware of how serious and complicated and the possible outcomes of this operation and not to expect a fast recovery all the time. Its far from straight forward and fraught with possible further problems.
We have all heard people say they know someone who "was playing football after a few weeks of having it done" nothing to it , "you can live easily with one kidney" All I can say is they haven't experienced anything like this.
I really would love to hear if anyone else has experienced similar to me and what was the result ?
Thank you for reading.
Simurgh, no worries at all on assuming dosage, bc they were gone so quickly, so long ago, that I don't even remember.Â
The hospital I am with in the U.S. is one of the top 3 in the country, yet my experience has been that even though my surgeon has been FANTASTIC, the rest is just so huge that it's a mess. Per example, my surgeon called me from home this past Monday to discuss this most recent pain. He wanted a CT scan immediately to check for pseudoaneurysms. Once the hospital itself got around to scheduling though, it's almost 2 weeks since I called to ask if I should be concerned. I really just have to laugh sometimes bc by now I always know that what the doctor says, and what will actually happen, are wildly different.
The pain is still there, but actually much less than this past weekend, so I'll just wait for the appointment. Tylenol it's been for the last 8 weeks, Tylenol it shall be for 2 more. 
In your profile I see that you have had a number of surgeries. Were they all RCC that had popped up in your other organs? What an ordeal you've been through.
