Disappointed and confused by the system

Well they could delay treatment a few days until bladder infection is sorted. Women commonly get bladder infections really but most do cope with that chemo cocktail. I really doubt it would have big issues as long as oncologist is aware before hand. And yes they recomnend you drink lots of water to help avoid irritation to the bladder and kidneys. I never even had a cold during chemo. My family had bad ones twice during treatment. I'd often get symptons and then after chemo it was gone. I figured it conveniently knocked off the infection. 

Thanks Marg. I guess I thought I had to say yeay or nay so they could give the booking to some other poor pathetic creature in the same (or even leakier) boat. Part of the problem in the decision is that I wasn't sure of which specific chemo was being proposed, I thought he said AC but wasn't sure. So I rang the nurse, sorry, clinical nurse supervisor and asked. My daughter had already researched the cocktail bar and said both the A (doxyrubwhatever) and the C (Cyclophosetc) were noted for causing bladder irritation. Asked the nurse, she said, "well, that's standard therapy, you have to drink a lot of water". I said I had bladder prolapse and repeated bladder infections, including right now this minute, and she said, "Hmmm, I think we did have someone else with that problem ..." And??? Conversation stopped there. Am I being ridiculous to think this might be relevant? Oh, right, I need to get with the standard program. Anyway I think that's tipped the scales. I'll take the risk, go for the radio and hormone therapy only and see how it turns out. If I am wrong and mets turn up in 12 months or less, then I will have backed the wrong horse. I do have a racing background btw. "And now, coming down the straight, it's Red Devil by a nose!". I don't think so.

Anneski you do NOT have to make this decision by Wednesday!

 Yes, there are optimal time frames, but many of us have uncontrollable delays. That may to our detriment, but anyone who is telling you that the time frame is that tight doesn't have your best interests at heart.

You've got a great deal going on in your head, work through it.

Being backed into a corner and pressured is a shitful situation. You are not buying a house or a car where someone else is likely to come in and cut you out of the market. I've never been late in my life, except for chemo. I'd ring them when I was twenty minutes late and say 'Start without me' Never happened.

You will not be punished because you take another week to decide.  Marg xxx

I suspect my father knew he would not handle serious illness well. He died instantly of a massive heart attack while reading the newspaper (became a family joke about the dangers of reading the Courier Mail!!).  Most of our lives, we just concentrate on living and what's happening, as we should. I don't think it's misplaced or morbid to spend a little time thinking about how we exit, especially if we have the good fortune of long, healthy and happy lives. Here's hoping you have lots more too.

Afraser, I am glad your mother had a relatively comfortable later life and a peaceful passing. I should say my dad did best of all: he was 78, he slipped his boat on a full moon in June, put on his pyjamas, went to bed and died in his sleep of a heart attack. He was alone at the time at our river house, nobody found him for a couple of days. I think that is the kind of thing I always had in mind. So glad to hear you are doing so well and enjoying your life now, while still aware of the other eventualities. I guess I just need to get through this decision-making stuff and begin to feel a bit stronger again.

More similarities! My mother too died at 93, however she willingly went into care when she was 86 and the other options weren't viable. Physical deterioration was remorseless, but she was cared for and as comfortable as possible. Incredibly, she remained cheerful (was always as sharp as a tack) until just a few months before she died. That's when I knew she wouldn't fight the next infection, she had quietly and calmly had enough. I'm working, travelling, enjoying my grandchildren. Life is good. But it also not for ever. So I'll enjoy everything I can but also make some plans for other eventualities.

@Annski just wanted to send you a big hug. You have so much on your mind. Decision making is the hard bit. I have quite a few side effects, but I can cope with them. I am 45 and got cancer when I was 42.  I had a laugh about your bus comment. :) I am into researching things too. I was reading oncology journals at one point. Now I focus on other things.

 I found having an advanced care directive in place, tracking my health info on the My Gov site and keeping all of my documents in one place helped. I also wrote questions to ask my doctors. I decided to have chemo, radio and surgery. Tamoxifen was a step too far. Quality of life/ survival is a tough balance to negotiate when you have so much going on. The Cancer Council counsellors were absolutely wonderful at supporting me. All the best. You are doing a great job and you know your body the best, you know what risks you are happy to live with. Sit in the sunshine, go for a walk, catch up with a good friend or buy something you love. It’s about feeling like your old self and remembering that life is good, even with the crap bits in there. You will return to a new normal, promise. xx 

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.

@Annski I hope you’re feeling better soon. I am 3 years cancer free and counting. I had Pure Micropapillary Cancer with 5 cancerous lymph nodes, satellite tumours, some of which were quite large. I’m up to surgery 7.

 The odds are different for everyone and it is tiring worrying about stats and odds. Ultimately, it’s a bit like crossing the road, you might get hit by a bus but you might not. I don’t think much about the stats these days. Side effects are not always good, but again they are individual and can’t really be predicted with any accuracy. I guess uncertainty is the hardest part for me, but it really is a process that gets easier as you go along. All the best. x 

Ah, most doctors have the same issue, it's all about saving life although I was heartened to speak to a couple of doctors in my mother's case (not about cancer at all) and their acceptance of her very clear directives! I'm 72 and not at all sure what I would do if I had a recurrence. While I am fit and active, I have an arrhythmia too. Any more chemo and I would worry about my already neuropathied feet. I'll make a decision if and when I have to, but it will be my decision in the end. And my end, as I would want it as far as possible, not what's imposed. Best wishes