I have added the entry below, there is no mention of disease.
"I went into hospital again on Friday as the stent was giving me so much pain. I was certain it had moved and I was right. My oncologist's radiographer called him to tell him the stent had moved and was not covering the hole. He came and told me yesterday morning. I was booked in for another endoscopy yesterday to remove it.
Before I went down to theatre, the surgeons right hand man, Dr BD came to see me to get the consent form signed. He asked me about the stent, I said I had been told by Dr D the stent had moved, Dr BD told me in had not. I said I still wanted it removed as the pain was too much. He then informed me that if it was removed the fistula would cause me problems. I would have continuos bouts of pneumonia and all anti biotics would stop working and I would be in a fatal condition. He was acting like a bully, 4 times I told him I wanted it taken out. It didn't end there, I rang my oncologist who rang them and put them straight, telling them it had moved. As they didn't have the CT results, they couldn't see it.
I went down to theatre and just before going in the surgeon advised me it had shifted about a quarter of an inch. He said he could pull it up or take it out.... once again I said take it out.
I was so upset at them for trying to make me keep it. My oncologist said they don't like failure. I don't see it as failure though, I see it as learning. If anyone else has to go through this, the surgeon now knows that it maybe painful for them.
On another note, the CT scan revealed that the meso had not changed. Theo has been great. I hope he continues to stay where he is".
I am afraid to ask Dr D about it incase he confirms that it is in the oesophagus. Why oh why when I have a good day is there something else to kick me in the teeth? I sure I am sticking with food because I have a stricture, If it was in the oesophagus, surely over the last 3 years it would have progressed and be showing up on the scan?
Oh well, nothing I can do about it. I want to know but I don't want to know through fear of it being confirmed.