I've posted a long reply on the other site you joined. Just wanted to say that this is a very supportive site and I have found lots of help and support here.
Thank you for your lovely messages. The kindness of strangers is a wonderful thing - reading your responses opened up the floodgates at last and it was a real relief to finally let it out. I'm still anxious and confused, but I think I'm an extra step along the journey now having faced up to, and talked with my boyfriend about the fact that I won't be growing old with him and that we need to make the most of now.
Any constructive thoughts on how to cope and prepare for what is to come, are appreciated.
For example, I've been looking into nutrition and how it affects cancer growth - has anyone gone down that route? Has anyone used Penny Brohn or the Haven for support? How have people involved their friends and family in accepting and supporting the situation? etc etc etc...so many thoughts keeping me awake! (again).
a big welcome to the club none of us want to be in. Nice as it is I would much rather be in the 'I'm Going To Live Forever' club.
My advice would be get a notebook and keep a record of the things you want to ask re treatments and questions. It is so easy to go to an appointment and forget what you wanted to cover with onc. I am on my second book this is a much thicker volume than the first!
I have had my secs for nearly 5 years and my diagnosis was not good but I responded well to the first lot of treatment and you just have take one step at a time. It never gets any easier in fact if I am honest it gets worse. I keep thinking, well I can cheat this for a bit longer.
I am one of the older ones and I feel cheated, so it breaks my heart when I read of younger women with this s..t disease. Like Jane I feel we should all get angry shout louder and try and change things.
Sorry that isn't much help and maybe not the right thing to post to a newcomer. So I will give you a very polite welcome and say how sorry I am that you have had to join us.
It sure as hell IS NOT FAIR. I feel that at 60 and can only glimpse what you must be feeling at 33.
And that question: How Long? You know they really can't answer it.The treatment of advanced breast cancer has changed so much recently...and the how long? question just depends on a multiple of known and unknown factors: the type of cancer: er, pr or her2; the site or sites of cancer; the responsivness to treatments; the number of treatments. All such a complicated picture and it probably doesn't help to know that statistically people live on average between 2 and 3 and a half years from a mets diagnosis...some much much longer and some much shorter.
I find uncertainty the hardest thing.
Keep shouting ITS NOT FAIR cause it isn't.
With a bit more anger all round we might force some real changes to find a cure.
You are so right when you say "many of you have been through this stage and have all approached it differently". And that is exactly why I feel strongly that there is no right way to take the news or to react. We are all individuals with different priorities and values, and cancer will have hit us each at a different stage in our lives. That must affect how we react.
I was diagnosed with liver mets in June 2007 and do recognise that feeling of resentment though having spent the last few years getting my life heading back where I wanted it to head after the primary dx. I have never cried in all that time for myself, though I do cry about lots of other things - most particularly my children, my hubby and my parents. Get very tearful when I think of how my illness and ultimate death is affecting (and will affect) them. I don't think not crying though is denial.
"How long have I got?" is the key question, isn't it? I used to wish the oncs could/would answer it but now accept completely that they really can't (just read some of the stories on here, both of people living much longer than anticipated and others, very sadly, dying so so quickly). I also think most of the time I prefer not to know - having a date might help with some of the decisions (re working or not and what to prioritise) but not sure I really want to have a definite date that I am heading towards. What a deadline!! (Sorry LOL)
So I do try not to put things off and do things when I can (cos I don't know how long I've got or indeed how long I will be able to do as much as I do now). Other than that I have continued pretty much as normal, adjusting when I have to.
Don't know whether any of this is helpful. I am sorry that you have had to "join" us but do hope that you get some support from the forum. AND manage to get some sleep! 4am is a horrible time to be awake in my view!
Sending you a big cyber hug Kay x
I am sorry to read what you are going through and just wanted to add that in addition to the wonderful support you will receive here, the helpliners are here for you with support and a 'listening ear' if you need one. The line is open weekdays 9-5 and Sat 9-2 on 0808 800 6000. The following link will take you to some further information if you wish to find out more about secondary support from BCC:
Over the past few weeks I've been going for lots of tests - at the moment I know I have spread to the eye and in my other breast and a CT showed dodgy signs in my lung and armpit that I'm fairly sure will turn out to be cancerous once they've explored a bit further.
At the moment to docs are all talking specifically about treating each problem but noone has talked to me about the big picture yet. I'm guessing I'm stuck with the cancer now - that whatever treatment I do, more is going to crop up elsewhere.
I turned 33 last week and quite frankly I'm feeling ITS NOT FAIR! Having survived the primary cancer 3 years ago, then 2 years later a local recurrence at the same time as splitting from my cheating husband I spent all of last year making my life wonderful again. I met the most wonderful guy and have just started a perfect job.
There's still an element of denial going on - I feel very tense and am not sleeping but still have not cried, ranted or anything else. I keep thinking 'what questions should I be asking, how should I be reacting' because on the surface I appear to be calm and in control.
I guess the big question I'm afraid to voice is 'how long have I got'? and that leaves the question - how would I live differently if they could tell me that.
I'm sure many of you have been through this stage and have all approached it differently. It helps to share on here and thought I'd just say 'hello' so that I have somewhere to come and rant at 4 in the morning when I can't sleep again!