Brilliant thread. Echoes all my own thoughts. Hadn't thought of the piano but when it gets to that stage would love to be able to say when and how- think about it sometimes- no great plan yet. One last chance to be in control of what happens.
Am so with you Jane that sometimes things are over-hyped but equally, know the value of each month and would love to be on the tail end of that curve. And Anne and Nikki, with you on all you say too.
I'm frustrated because something that helps people live significantly longer really could be just round the corner. With all the current science, it may be very soon but will I live long enough to witness it....Hmmm...
A very good and interesting post Jane.I used to feel uncomfortable reading your posts as I am by nature a very positive person but I've really started to see where you're coming from since my mets diagnosis and marriage breakup now that I've had more time to think on my own. It is so hard to be honest and upfront about how it feels to feel great as I do "relative" to how I was last year on 9 months of chemo and a marriage breakup but to know at the same time that death could come at amy time and not even knowing who will, if anyone, will actually want to be with me at that time. I know that actually I look and feel better than I have in years now I'm no longer in what had really become an uhappy marriage with the strain of the illness.Now that I've had 3 successive good scans with NED (but 2 changes noted on my liver that my onc. didn't even mention to me!)I think people think I'll be fine for ages and yet I'm so mindful that as you said Jane,the average survival with mets seems to be under 3 years and it's now 16 months since my diagnosis. I am also mindful that being alone with no close family here or supporting me that I may have to make the decision to stop any treatment earlier than if I had more support.
Because I look and seem so well at the moment I think even those close to me forget or don't really know how ill I probably am or will be at any time. A close friend,knowing how much I had wanted children, actually asked me yesterday if I'd reconsidered fostering. Inside I felt like saying "Are you mad - I'm dying and can only manage to work 8 hours a week, can barely look after myself sometimes and you think I could take on that now - don't get me wrong I'd love to and if I had children of course I'd manage the best I could but to actually contemplate taking that on now would be completely selfish of me to any child anyway!! Of course I just smiled sweetly and said that no that wasn't an option for me now.
I've been going a bit mad on living life to the full at the moment and have been out a lot and having great times but this is because I know it could all stop tomorrow and it's my way of blocking that out I suppose. One of my closest and most supportive neighbours who helped me so much through my hellish year last year both practically and emotionally has just been diagnosed with Mesothelioma and the prognosis is very poor and this has hit me very hard and brings home how fragile life is. It is hard to find someone to trust to be really honest with without putting them off - I guess that's why I put such a positive spin on things.
I agree with what you said jantharra about being hit on the head by a piano - I'm a piano teacher so that would appeal to me! I too feel that a sudden fall off a cliff or something seems more appealing than a possible protracted painful death with people around just waiting for you to die.
Sometimes I have fantasies about going to the hospital for results to be told my diagnosis was a mistake but I know it won't happen!
I think I also try to keep things positive while I feel ok as last year was so awful and I just don't want to waste my good time while I've got it. It's also hard on limited resources - I've been spending lately to enjoy myself and then get worried that actually I may live for several years and then run out of money but I'd rather that than just sit and wait to die!
Take care all x
I am so sorry I was just going to contribute to this thread and the phone rang.
Will regroup and be back later.
As always you raise some very good points, after all what this is about for us is how long we have to live. I have refrained from asking my Onc the questions for a couple of reasons, 1, do I really want to know as if I do will I 'sign off' in my head when that time is due, improbable, but.... and 2, they are usually wrong.
However, what I think about a lot is quite simply when will I die, and how much will it hurt.
I often have this images in my head of laying in bed, my family around me and gently expiring away to their tears, then I get writing in agony until put in a drug coma and just dying that way. Quite frankly I don't want either, but having absolutely on experience of seeing people die from cancer other than my boyfreinds father some 16 years ago (at home, with one last urge to go to the toilet which is exactly where he died in an Elvis stylie) I don't know what my end will be like.
A part of me wishes I could just have some nice clean instant death from a piano on my head or suchlike, get it over with, no fears, no pain. Piano euthanasia, there's a thought (sorry for my flippance, it is how I cope)
I have no qualms talking about dying, but the winces from people when I even mention the world are awful. Lets not talk about it and it wont happen eh.
How long does each group survive on 'average' triple negs with bone, with liver, with lungs, with locals, with combinations, all the other different permutations. Does it really matter what our pathologies are, what is the average length of time for people from diganosis of secondary to death. Or does that even matter, as none of us ARE average.
We're going to die Jane, it's going to be f**** unpleasant and it's even more f***** unfair. All I can do in my world is take each day and hope that my progression is slow, and mostly without pain, both unlikely.
The only 'significant improvement' I want from drugs is a cure or as with HIV a holding treatment that keeps me alive and in a good physical condition, anything else, well is it really worth it.
Sorry, lots of rambling in response and no real answers or outcome, chemo yesterday and feel shit.
On another thread Deirdre commented on the use of the phrase "significant improvement" used often to describe results in trials.
In fact when one examines the results they often only show tiny incremental improvement. For example, follwoing the ASCO conference there has been a lot of hype about a PARP inhibitor trial for triple negative breast cancer of a drug code named BS1-201. Reuters, for example, reported that it showed "improved survival by 60%" compared with the arm which just took chemotherapy.
Sound wonderful? A drug to go to the barricades for? In fact when you look at the trial results this far what it did was increase median survial from 5.7 months to 9.2 months..by survival here we're talking time till you're dead.
Now, sitting where I'm sitting getting 3 extra well time months does matter, but in the scheme of things I simply cannot get excited by these results.
More than this: it strikes me that among people with advanced bc there is rarely (on forums like this) discussion of the median time till death or progression of any of the drugs we take. Women with primary breast cancer talk a lot about the percentage improvement having chemo and other treatment will or won't have. But strangely there is silence among those with secondaries. We each tell our own anecdotal stories and pass on the good news of x who took xeloda for 2 years or y whose cancer disappeared for ages after weekly taxol. (And the stories sometimes get repeated long after the women are dead.) But we don't look at the averages. We probbaly don't because they are depressing. Indeed it s very depressing that average survival with mets is around 2-3 and a half years after diagnosis.
Now I know that passing on good anecdotal stories may lift us and newly diagnosed women often get bombarded with the anecdotes rather than shown empathy with the terrible news they must come to terms with that they're going to be dead long before they should be, perhaps pretty soon ...but if we never talk the truth, talk the stats, talk the reality that we are dying then I reckon we collude in the collective failure to find drugs which really work...to have drugs which will cure.
Wasn't sure where to post this...it should perhaps be in current issues but I wanted particularly to know what people with mets think.
Deirdre...you wrote about getting cynical about trials. I don't think you're cynical...but 'significant improvment' indeed is misleading.