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
Thanks for your comments @Afraser, precisely so. It is great to know there is someone else here in the older cohort. I know exactly what you mean - it has to be your decision in the end.
@LucyE. My god! Surgery 7!! I am struck by the idea that it can get easier as you go along. But I guess I can see how this can be - you adjust to it and live day to day. Unfortunately I have a lot of faith in stats and likelihoods. Things operate through repetitive patterns and stats just describe what these are. I have spent my entire life thinking about how things happen, how they emerge from prior things, trying to understand causation and consequence and the need to plan based on accurate information. Of course we can't ever know everything and yes, there's always that bus just outside the door waiting for you when the time is right. Actually I live on a road constantly being used by busloads of tourists so my chances of that outcome are significantly higher than that of someone who lives around the corner on a side street. Well, there you go, stats again! I suppose there is always the idea of destiny or fate. That takes us into a very different dimension, one which I occasionally flirt with. Hmm, let's see what my Tarot says today! Well, the outcome is The Hermit: a time to be alone and a time of loneliness. A time for quiet introspection and rest. The Hermit signals not to make hasty decisions. Good grief, that is exactly right!
Since seeing the oncologist on Thursday the chemo decision now has to be made. Others will be needing the bookings/slots he has set up for me on the assumption I will do it. Today is Sunday, I have to let him know by Wednesday. Had another difficult conversation with my man and my daughter yesterday. Every time it's a bit the same - they are leaning towards chemo, I argue against it. The clearest issue now is, how will I feel if I find I have mets in a year or two? What will I do then? Will I upbraid myself and blame myself for not having done everything I could have now, while I am pre-mets? I think it is just dawning on them that no matter what happens this is not going to have a happy outcome. But, I keep saying, I'm going on for 73. Nobody has a happy outcome. Even with no illness, life expectancy for someone of my age is 86. With hormone treatment but no chemo, it drops to around 79 (yes, I know, just averaged statistics). With chemo, add maybe 2 years (according to the predictor/calculators). Hullo! That is 81 or 82, with the possibility of ongoing side effects, effects on the heart, peripheral neuropathy and the rest of it.
If the years between now and the end of the movie are more or less healthy ones with a more or less functioning mind and I can enjoy them with minimal other illness that seems like a better idea. I know that the Aromastase will be needed and that has side effects like joint pain and bone loss. I already have very severe arthritis in right shoulder, rotator cuff tears, can't hang clothes on the line or lift it much above my shoulder. Left arm could develop lymphoedema following the mastectomy and axillary clearance. Isn't that enough suffering to be going on with? Is this some kind of challenge, like how much can you take? They even said I was being a wimp yesterday. Bugger it!
My mother died at 93 and her last few years were awful. She wasn't sick! She was just getting old. She insisted on keeping on coping. She lived alone in her retirement village. She fell down and went to hospital, came back, fell down and went back to hospital, she could not go on living alone, she started fires while trying to cook, her arthritis was so bad she could not open cans or jars or bottles. She could not reach into the back part of the fridge, which was full of rotting food. She had become bladder incontinent but would not buy "nappies" because it was undignified, and, she said, too expensive. Her sheets needed constant changing, she wasn't strong enough to do it. The village staff did what they could but she was in a "self-care" apartment and there were no available higher-level places there. I drove there after work two or three nights a week and at the weekend to do what I could but it was an hour away from where we lived. None of the family could have her live with them, I could have quit my job and moved in with her, I wouldn't do it! In the end she had to go to a nursing home, we told her it was a convalescent home, she waited every day until she could go back to her apartment in the village, she begged me to take her back there. One night she wrapped her upper front dentures in a tissue, the cleaning staff threw them away, she couldn't eat properly any more, she got pneumonia from food inhalation, she finished up back in hospital, she was delirious and on antibiotics but could not get better, then she was on morphine, they asked us, did we want us to continue with the antibiotic therapy? If they stopped, she would die. She was unconscious, febrile, thrashing about in her bed, put on slow morphine drip, didn't know us, didn't know anyone. Should we let them "make her comfortable"? Yes, they should do that. Antibiotics withdrawn, morphine drip continued. She died late at night, nobody was with her, alone to the end.
Who wants to get to that point? Who can look after people properly when they are old and in a state of greatest need? I couldn't look after my mother properly, and I don't expect my children to look after me. My man already has two stents in his heart and may need knee surgery very soon. Who is going to look after him? It won't be me if I am sick from chemo on top of everything else.
These are the questions that arise for me from this BC diagnosis. It is not the same for someone who is 50 or 60, let alone much younger. On the other hand - and here's the kicker- I'll be really cranky if it comes back in 18 months or less. So I'm gambling over a few years here. Odds can't be calculated, but on balance I think they favour getting at least a few years more in a reasonable condition. After that - mets means constant chemo, but quite a lot of people seem to be able to stabilise on that for two years or more ... not that it will help my loved ones at that point who will still have to deal with it. Am going to see a counsellor on Wednesday for a bit of independent input. Meanwhile off to see the prolapse surgeon tomorrow to see why the bladder seems to have developed a mind of its own.
@LucyE. My god! Surgery 7!! I am struck by the idea that it can get easier as you go along. But I guess I can see how this can be - you adjust to it and live day to day. Unfortunately I have a lot of faith in stats and likelihoods. Things operate through repetitive patterns and stats just describe what these are. I have spent my entire life thinking about how things happen, how they emerge from prior things, trying to understand causation and consequence and the need to plan based on accurate information. Of course we can't ever know everything and yes, there's always that bus just outside the door waiting for you when the time is right. Actually I live on a road constantly being used by busloads of tourists so my chances of that outcome are significantly higher than that of someone who lives around the corner on a side street. Well, there you go, stats again! I suppose there is always the idea of destiny or fate. That takes us into a very different dimension, one which I occasionally flirt with. Hmm, let's see what my Tarot says today! Well, the outcome is The Hermit: a time to be alone and a time of loneliness. A time for quiet introspection and rest. The Hermit signals not to make hasty decisions. Good grief, that is exactly right!
Since seeing the oncologist on Thursday the chemo decision now has to be made. Others will be needing the bookings/slots he has set up for me on the assumption I will do it. Today is Sunday, I have to let him know by Wednesday. Had another difficult conversation with my man and my daughter yesterday. Every time it's a bit the same - they are leaning towards chemo, I argue against it. The clearest issue now is, how will I feel if I find I have mets in a year or two? What will I do then? Will I upbraid myself and blame myself for not having done everything I could have now, while I am pre-mets? I think it is just dawning on them that no matter what happens this is not going to have a happy outcome. But, I keep saying, I'm going on for 73. Nobody has a happy outcome. Even with no illness, life expectancy for someone of my age is 86. With hormone treatment but no chemo, it drops to around 79 (yes, I know, just averaged statistics). With chemo, add maybe 2 years (according to the predictor/calculators). Hullo! That is 81 or 82, with the possibility of ongoing side effects, effects on the heart, peripheral neuropathy and the rest of it.
If the years between now and the end of the movie are more or less healthy ones with a more or less functioning mind and I can enjoy them with minimal other illness that seems like a better idea. I know that the Aromastase will be needed and that has side effects like joint pain and bone loss. I already have very severe arthritis in right shoulder, rotator cuff tears, can't hang clothes on the line or lift it much above my shoulder. Left arm could develop lymphoedema following the mastectomy and axillary clearance. Isn't that enough suffering to be going on with? Is this some kind of challenge, like how much can you take? They even said I was being a wimp yesterday. Bugger it!
My mother died at 93 and her last few years were awful. She wasn't sick! She was just getting old. She insisted on keeping on coping. She lived alone in her retirement village. She fell down and went to hospital, came back, fell down and went back to hospital, she could not go on living alone, she started fires while trying to cook, her arthritis was so bad she could not open cans or jars or bottles. She could not reach into the back part of the fridge, which was full of rotting food. She had become bladder incontinent but would not buy "nappies" because it was undignified, and, she said, too expensive. Her sheets needed constant changing, she wasn't strong enough to do it. The village staff did what they could but she was in a "self-care" apartment and there were no available higher-level places there. I drove there after work two or three nights a week and at the weekend to do what I could but it was an hour away from where we lived. None of the family could have her live with them, I could have quit my job and moved in with her, I wouldn't do it! In the end she had to go to a nursing home, we told her it was a convalescent home, she waited every day until she could go back to her apartment in the village, she begged me to take her back there. One night she wrapped her upper front dentures in a tissue, the cleaning staff threw them away, she couldn't eat properly any more, she got pneumonia from food inhalation, she finished up back in hospital, she was delirious and on antibiotics but could not get better, then she was on morphine, they asked us, did we want us to continue with the antibiotic therapy? If they stopped, she would die. She was unconscious, febrile, thrashing about in her bed, put on slow morphine drip, didn't know us, didn't know anyone. Should we let them "make her comfortable"? Yes, they should do that. Antibiotics withdrawn, morphine drip continued. She died late at night, nobody was with her, alone to the end.
Who wants to get to that point? Who can look after people properly when they are old and in a state of greatest need? I couldn't look after my mother properly, and I don't expect my children to look after me. My man already has two stents in his heart and may need knee surgery very soon. Who is going to look after him? It won't be me if I am sick from chemo on top of everything else.
These are the questions that arise for me from this BC diagnosis. It is not the same for someone who is 50 or 60, let alone much younger. On the other hand - and here's the kicker- I'll be really cranky if it comes back in 18 months or less. So I'm gambling over a few years here. Odds can't be calculated, but on balance I think they favour getting at least a few years more in a reasonable condition. After that - mets means constant chemo, but quite a lot of people seem to be able to stabilise on that for two years or more ... not that it will help my loved ones at that point who will still have to deal with it. Am going to see a counsellor on Wednesday for a bit of independent input. Meanwhile off to see the prolapse surgeon tomorrow to see why the bladder seems to have developed a mind of its own.