Disappointed and confused by the system
I should start by saying I am almost 73 and have had a lifetime of excellent health (apart from hysterectomy a couple of years ago) and never expected to be dealing with this. Mammograms stopped a few...
Forum Discussion
Hullo all, a quick update. Saw the oncologist and he was great, easy to talk to, willing to listen, understood what I wanted to know - agrees that my situation is not at all clear-cut, contradictory elements to the diagnosis, could go one way, could go another. I felt he understands my position on chemo to a degree but at the deeper level he seems mainly worried about saving my life, not about the kind of life I want it to be. Side effects? Well, sure, but we can give you more drugs and more drugs and more drugs to deal with them. He brushes off the questions about percentages and statistics, yes, I know, everyone is different, each case is unique. More or less refused to run Adjuvant Online for me, so I have to find another way to do it, I've done Predict and the Cancer Math calculations, would like to see what Adjuvant would say, will have to either pretend to be a doctor (I see some others here have done that) or get my GP to run it for me - he might do it.
The bladder infection has had an enormous influence on my thinking here. It flared up as soon as I stopped the antibiotics after the hospital discharge (I had been on the same one as I had IV in hospital) so GP started me on another. It worked for a day or two then failed spectacularly, resulting in two-three days of unspeakable discomfort and agony. GP was great, sent sample off to the lab, rang me while I was actually at the oncologists' and said I had a bad case of pseudomonas, which is a gram negative rod organism endemic in hospitals and resistant to almost all antibiotics. LSS, put me on Cipro, one of the few oral antibiotics that still works on this organism, but it affects Long QT syndrome, which I have, a heart arrhythmia which causes syncope (falling down) but on balance he thought it better than the alternatives which require hospitalisation and IV infusion. Thank God it worked overnight, like a total miracle, but there are a lot of potential side effects. Anyway, there you have it, I haven't even started chemo yet and I'm already almost hospitalised. I honestly can't see how I could go through this kind of thing with a compromised immune system. But the medical response is - don't worry, take more drugs.
I must say here that it is true that pseudomonas lives in soil and such and a couple of people have said I could have got it gardening. I can't write this off as impossible as I did do a little bit of gardening before going into hospital but my dose of this is extremely virulent which is characteristic of the hospital acquired infections according to my GP. I have to tell the oncologist in a few days whether or not I will take the chemo he has already booked me in for in the Happy New Year. My man and my daughter have seen what I have gone through in the past few days and they are starting to see it my way. I am trying to work out what it is that the cancer medicos really think they are doing. I can't wait for @Zoffiel to write her book!
The bladder infection has had an enormous influence on my thinking here. It flared up as soon as I stopped the antibiotics after the hospital discharge (I had been on the same one as I had IV in hospital) so GP started me on another. It worked for a day or two then failed spectacularly, resulting in two-three days of unspeakable discomfort and agony. GP was great, sent sample off to the lab, rang me while I was actually at the oncologists' and said I had a bad case of pseudomonas, which is a gram negative rod organism endemic in hospitals and resistant to almost all antibiotics. LSS, put me on Cipro, one of the few oral antibiotics that still works on this organism, but it affects Long QT syndrome, which I have, a heart arrhythmia which causes syncope (falling down) but on balance he thought it better than the alternatives which require hospitalisation and IV infusion. Thank God it worked overnight, like a total miracle, but there are a lot of potential side effects. Anyway, there you have it, I haven't even started chemo yet and I'm already almost hospitalised. I honestly can't see how I could go through this kind of thing with a compromised immune system. But the medical response is - don't worry, take more drugs.
I must say here that it is true that pseudomonas lives in soil and such and a couple of people have said I could have got it gardening. I can't write this off as impossible as I did do a little bit of gardening before going into hospital but my dose of this is extremely virulent which is characteristic of the hospital acquired infections according to my GP. I have to tell the oncologist in a few days whether or not I will take the chemo he has already booked me in for in the Happy New Year. My man and my daughter have seen what I have gone through in the past few days and they are starting to see it my way. I am trying to work out what it is that the cancer medicos really think they are doing. I can't wait for @Zoffiel to write her book!