Disappointed and confused by the system
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Annski have you rang the BCNA helpline 1800 500 258, they are wonderful and can give you information and links to things to help you make decisions.
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Thanks - not yet, I was about to do it this morning but I feel too unsettled to be able to explain myself properly. I will give it a try shortly when I feel less peculiar.0
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Hi Annski,
You can access a few visits to a psychologist or counsellor by getting your GP to put together a mental health plan for you. I was a bit 'meh' about the idea to start with but have found that part of my treatment is just important as the rest.
Conversations with family members about death can be difficult. I found it very beneficial to be able to test run things with my shrink, known as That Poor Woman, beforehand and it's great to be able to unload on someone who is not close to you, is not going to get upset or, worse still, come back to you months or years down the track with things you have said while you were under extreme pressure.
I think we have all had those moments of looking around going "What the hell am I going to do with all this stuff?' I've had a couple of goes at doing the big chuck out and planning garage sales etc. It was overwhelming and I've decide bugger it. Someone else can clean it all up when I'm gone. Whenever that may be. For the moment make sure your will and power of attorney documents are in order. Think about doing an Advanced Care Directive in case everything turns to shit in a hurry and leave it at that for now.
You learn a great deal when you get cancer. One thing that most people don't realize is that the success rates for chemo are frequently in the single figures. 7 - 9% is really common. Before all this happened I thought that chemo must surely double your chances of surviving. Finding out that the first time it gave me a 12% better chance and the second time about 5% was very confronting.
The doctors have an obligation to let you know what your options are, even if the increments are tiny. The difficulty, for me, was having my partner and son weigh in on the argument. I had decided not to have chemo this time around as it obviously didn't work last time and I knew what it was like. Once I told them this the pressure came on; they simply could not see why I would miss a what they perceived as a chance to stay alive. I regret giving in, but it's done now and I have to live with the consequences.
Being in pain doesn't help while you are trying to get your head around everything else. We all do the best we can and in the end, that will be enough. Marg xxx
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Hi Annski,
So sorry to hear that you have had to have a "pyjama" day or two, you have made your decisions, you have had "those" conversations and I am sure your family have had a lot to say,you certainly have achieved a lot of information wise, in a short space of time and its such a pity that you have had to do it all yourself, would you mind if I said, take a breath and step back
you have had a lot to contend with recently and now a bladder infection,I can sympathize there not nice, having a day in bed will do you good,I understand that your mind is racing with so many things and what ifs!! but now is the time to say okay, I have all the information I have made up my mind about what I want, is it possible that you now just try and heal, both in body and soul, its certainly a bad time of year for all of this to happen, in fact its never a good time of year for breast cancer,however, what you need now is to be gentle on your self and so do your family, you have plenty of time to "get things in order" I understand, its what we all want to do when something like this comes crashing in to our lives, can I say you are not going to die today, tomorrow or next month, first things first - you need to regain your strength - do you have any plans for the holiday season, I do hope you do not plan on cooking for your family!!! it is their time to look after you, not just because of the breast cancer but simply because you are their mother, sister,aunt or friend, so please take care, and enjoy the beautiful December day, its now that we realize just how those small things are important -sorry I cant sit down and have a cuppa with you!! please keep in touch and let us know how you are, the cancer council have some great cancer nurses and if you just need a chat or have any questions ring 13 11 20 mind you, you will have to wait and press a few buttons first
but I found that it was worth the wait and they were able to put me in the right direction, I am 62 have Advanced Breast Cancer which has decided to take up living in my liver and my spine and am working on my 5 year anniversary,so please tomorrow is another day, the sun will set tonight and the sun will rise tomorrow,
wendy554 -
You can live a lot of life in 5 years. My sister was clear 5 then developed metstatic breast cancer. Another 10 before it took her. She got to see ger children marry. Meet her grandies. So many thibgs she wouldn't have without chemo. Not everyone is sick on it. If it is unbearable, you can always stop.
Trouble with stats is we don't know which side we are on. What if you are the 10% still alive at 10 years? I guess this is where we have to have faith that we just might be.5 -
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Primek - yes of course, a lot of good things can happen in those five years, and making it to 10 would be amazing. But all the stats I have now seen show that with my particular form of BC, given that the tumour is so large and there was a lot of bad stuff in two lymph nodes and evidence of cancer in another eight, the added value of chemo is still comparatively small. The really big difference is full surgery, axillery clearance plus the Aromatase. (Can't find out exactly what dfference the radio makes but I can see the logic of that and am OK with it). With full 3rd generation chemo there is still only 60% chance of five year survival. But as you say, depends which side of the cut-off figure you are on. But I do appreciate what you are saying and will be giving it a lot more thought after seeing the onco on Thursday, obviousy. All best wishes, A.0
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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!0 -
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 wishes0
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@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. x1 -
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.
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@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. xx1 -
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.1
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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.
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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.0
