I presume that different hospitals have their own policies when it comes to how much information is given to patients and when. I was asked to meet the consultant and discuss my operation about 2 wks before my op. I assumed he was going to tell me what they were going to do. Instead it was to discuss liability, I was told it would be a very complex operation and there could be a few things go wrong including death. The death thing wasn't a big deal as I was already facing that if I kept the tumour, becoming a cabbage did, and being a burden to my wife and kids preyed heavily on my mind.
When I got to the operating theatre the anaesthetist then explained that they would be removing a rib(s) and deflating my right lung as they would be accessing the tumour through my back and I would be losing about half my stomach or more. He also explained that I would be connected to about 17 different wires and tubes for the next 7 – 10 days. These are the things that were left out of my conversation with my surgeon at the beginning. I was told afterwards by some of the ICU nurses that quite a few people refuse the operation, even get of the operating table just before they get their anaesthetic.
Maybe they waited until I was in the operating theatre to tell me as they knew I hadn't got any legs and couldn't run away.
I was wondering what others have experienced and is there a good time to tell you what's going to happen.
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Free_Wheels
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Hi, you seem to have had a rather hard time of things with the way the procedure was explained to you. I had a very sympathetic consultant and clinician with me when everything was expalined, and he kept stopping to ask if I understood or did I want him to go through aspects again. He even asked if I wanted to make another appointment to hear the rest as he felt I was overwhelmed with it all. Yes, all the procedure was explained to me, but in a very un-clinical sympathetic way. Even my appearacne in HDU was explained to my husband as they said all the tubes and monitors can be quite distressing for family to see.
My options were discussed and they listened to everything I had to say. Even the day before the surgery my consultant came and talked to me and asked if there was anyhting else I wanted to know, and at this point he mentioned things I thought he hadn't told me previously, but my husband assured me he had, so it shows that you dont take everything in. I had complete faith in my consultant and was happy to place my health and life in is hands.
Liability was never mentioned, afterall what was the choice?
I have to admit that I really didn't want to know what was going to happen, but seems in these days of litigation everything has to be explained, but it is all down to the way it is done.
I hope you are progressing well, and enjoying life now
Best wishes
Edwina
I remember quite clearly speaking to one patient after the operation who said that he had been quite surprised to have woken up afterwards because the pre-operation explanation had dwelt on all the risks! I do think that the medical liability issue has seemed to push the process into being too legalistic in some cases. And another time a patient discharged himself immediately before the operation, and did not go back for it until he had spoken to a patient who had had the op some weeks beforehand. When he heard that he was due to be back at work shortly it transformed his attitude and he went back and had the surgery.
We all have our threshold on how much we want to know, or not know about these things!
I suppose the question to the surgeon / anaesthetist is "Would you advise me to have this operation?" Because of the consideration they give beforehand on the chances of success and the fitness of the patient, they are hardly likely to say No. But this medical litigation issue does seem to get in between the doctor's best advice and the welfare of the patient.
Bless you, sounds herendous!! Hospital's must have their own policies, I had like Edwina everything explained in the best possible way.
I did not get a choice of treatment, thankfully that was decided for me, they told me and knew best! I knew everything I had to come rib's, tubes, etc. (Well nearly was not meant to have all the stomach taken away, nick named my surgeon Mr take away)
(Worse than they thought stage 4) The death thing was played down, never heard liability positive positive! (I wrote my will)
I was the opposite to Edwina, wanted to know everything!! ha Saw pictures on the internet of the tubes, scar. Prepared myself. (I thought)
I find your experience un believable, you deserve a medal! Hope no one else had to go through this before the op!!
Good Luck to you, so well done!! Keep the good humour up.
I am surprised and shocked by your exerience, which is completely different to mine and other patients I know.
It was explained clearly to me and my wife by the Consultant and CNS straight away when the cancer was found, I was told exactly what to expect tube, pipe, wire and drain wise, what they plan to remove, where scar will be, possible complications during surgery, etc...
The risks were also explained, of the surgery it self, life after surgery and if I decided no surgery.
Also had contact details of the CNS to ask questions before surgery, just in case something did not sink in first around.
Now five years out and still have support of and contact with the hospital team if I have any queries or problems.
I do hope no one else has to go through your experience, the mental and phyiscal welfare of the patient (and carer / partner) pre-op should be the main concern for all consultants but it is hard for them to understand how we feel at the time of finding out we have cancer (not an excuse, just a thought)
I'm a burns survivor and amputee and I know what it's like to dance with the devil in the fires of hell.
I've had well over 50 operations, some of the reconstructive surgery took 14 hours.
I know what it's like to die.
My wife is a nurse.
Because of all of the above I get treated like an old hand and doctors tend not to go gently, gently with me. For myself I'm not bothered, I've been there, seen it and got the scars. My wife on the other hand, although a nurse, she is a human being first. To say she was upset by the following would be an understatement.
I went to my GP with swallowing difficulties, I was finding it hard to swallow liquid, they instantly arranged for me to have a camera put down my throat. The appointment was made and I was to be seen at 17:30 hrs on the Friday. I had the scan and was taken back to a side room, I stupidly thought it was a recovery room. A couple of minutes later a nurse walks in with my wife, then without any delay, I was told, "you've got cancer" I said, " are you sure?" "Yes" was the reply, they then went on to explain that it was a tumour. All I could think of saying was, "Does that mean I have to sell my Isle of Wight Festival tickets"? "When is the festival"? " "June", I said. “You will not have any use for them" was the reply. With that they started to leave the room as it was 18:00 hrs and home time. They did remember to give me a load of leaflets and told me there was a phone number if I had more questions. My wife was in tears and inconsolable. The whole discussion took them 5 mins. It still hurts when I think of my wife in tears and shock, all because it was end of shift on a Friday and home time. The above isn’t written as a complaint, more as an observation. People assume that because I can take it my wife can as well.
I did go to the Isle of Wight Festival and made sure we enjoyed every last minute. No matter what time I wake up, my first thought is always, god I’m a lucky so & so I’m still able to wake up.
What's the punchline to that joke - answers to the name of Lucky! All I can say is that with the exception of a very nervous doctor at the hospital where I had my endoscopies done, everyone has been honest & open about what is to come. There are obvious things they don't know & the staff then don't make comment I did find that a little frustrating, but the further I travel the more I realise that everybody meets different hurdles on their journey. The specialist nurses have really been a lifeline before & after surgery. They are knowledgeable, friendly, sympathetic & honest. When they don't know, they find out & get back to me. No complaints at all from me.
This experience is just unacceptable!! please send your oringinal message on here to your hopsital Patient complaints department, this SHOULD NOT be happening. Don't feel that you are making a fuss obviously the people concerned need training in in the 'breaking bad news' area. I do hope that you are recovering well and I am so sorry that you have had such a bad experience.
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