Why the distiction between primary /secomdary Bc on these fo

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I browse through the site most days and post if I can help with information, or share my experience. As others have said it is one thing to think you may not be here for the 2012 Olympics but to know you and others absolutely wont be is a whole different ball game!

I too get frustrated when we are jumped on for being negative and we are actually just saying it as it is. I am and always have been ‘a glass half full’ type of person but when I feel weak and have some new scary development in my cancer I want to be able to post about it. In the hope there will be someone out there that has got through it, not told that I am scaring people. If a post scares those reading it spare a thought for the poster.

I used to read jpoets posts long before I ever posted and I loved her personality her no nonsense approach and I have since enjoyed her poetry and her husbands blog. Sadly there is only one way we will log out of the secondaries forum and that scares the sh.t out of me!

We do have some good chats on there though, trivial, political, confrontational and I for one would not have it any other way.
I love it, so yes anyone join us just don’t give us the negative scary
crap. We are as we are.

Love Debsxxx

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Hi
To be honest, I don’t know what my glass is doing any more! It’ll stabilise I’m sure.
Last few weeks since I had a relapse, reality has kicked in quite hard and heavy and on top of that I’ve been coming off anti-depressants (good timing, eh?).
I had an awful diagnosis 18 months ago. They took 3 months to diagnose what was wrong with me and I thought I’d be dead before they found out at one point,no exaggeration. Anyway,to prevent post-trauma stuff, they recommended anti-depressants. Initially, I couldn’t read any posts. I was just trying to stay alive. But then I got a bit used to the fact that day by day, week by week I was still living and more to the point feeling a bit better. At that point I needed hope, not scary posts.
However, all through last year, I felt fantastic. One transfusion had sorted my blood out and tamoxifen really worked well, my eye came back to over 90% not wonky, my ascites was going, my scans showed improvement and the anaemia was history. I was up and about, going to see as many people as I could. I’d had a reprise. I could be the one offering hope to others. Everyone commented on how cheerful, strong and positive I was.
This year, it all feels really real. I know I’m stuck in a process that I can’t escape from. I may have had my best bit of luck with the tamoxifen response but I cross my fingers for more good responses. I changed my car the other day and when the guy asked if I wanted a three year cover, I could have cried.
Equally, I have spent time with two primary friends diagnosed just after me. We’re all very down to earth about it all.
I suppose what I’m trying to say is that there isn’t a boundary really, just that at times, we desperately want to reach out to read something uplifting, sometimes we don’t want to read something that dashes our hopes, yet at other times we are in that place, thinking about mortality and how our disease affects ours and we want to talk about it. I haven’t wanted to as yet but I’m sure I will.
I don’t suppose we can protect anyone from the harsh realities of living with advanced cancer but I truly wish I could. Maybe I’m learning that I can’t. At times, I find the emotional roller-coaster on this website too much and I’m considering weaning myself off it. At times, I just feel that it takes over.
Two other things
First, I definitely think I’m more emotional/crazy at full moon!
Second, I’m just looking forward to going on my hols in a week’s time- yippee! Hopefully, I’ll fill my glass back up a bit when I’m there.
Best wishes
Anne

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One last thing for the mo, one of the hardest things for me was knowing that I couldn’t be the strong one anymore. Now I couldn’t offer help, I needed it. It’s part of my nature to want to protect, help and be the strong one who copes well in a crisis and helps someone out of their turmoil. In fact, one of the things that I still feel the strongest is the need to be that person.
Maybe that’s why I sometimes don’t want to read posts that I sometimes label as ‘negative’ because they remind me how I’ve been forced to change and accept that in many ways my life has and will be changed too.
Well, this post contains a lot of soul-searching stuff for me but I think I may step back a bit and not impose my views. It’s a very big picture and I’m just one small bit of it.
Anne

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One last one. Debbie, I wouldn’t cosider you wanting to talk about a bad develoment for you as negative at all. We should all feel able to look for that support on here. I just struggle a bit with the anti-positive posts on here sometimes and feel it’s a shame if we load that on women with primary cancer in particular. Still, if they will go looking…!
Ah well, enough rambling from me, primary/secondary, what the heck! The users of this website are a savvy bunch and can probably take the rough with the smooth. Let’s face it, we’ve all had to deal with THE bad news, haven’t we?

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I think my glass is probably just cracked but it can be refilled and refilled.

My very first post as primary newbie on this site in Feb/March 2004 was called: “I’m not thinking positively about my fight against cancer”. I’ve never looked back. The debates about language and cancer continue to rage across all kinds of cancer boundairies.

The Olympics…oh yes I remember when London got them…I was living near the Olympic site at the time. I didn’t think then that I’d see them and I think even more now that I won’t but I’m not yet quite at the stage of knowing for sure I won’t…(guess all my medics would bet for sure I won’t.) The day after the Olympics were announced a 30 something young Polish woman who cleaned my house was blown up on the tube. Perspective.

Some people do know for sure they won’t see the Olympics. Some people don’t and some of those who don’t know may do. I can prophesy one thing for sure only…there will be women in the secondaries forum still alive when the Olympics come to the UK…and there will be women in the primary forum who will by then be a year dead. Its for that reason that I think divisions can divide rather than unite.

I was moved by your posts Anneth. These words from the forward of Jerome Groopman’s book The Anatomy of Hope are for you especially:

“Pandora, the first mortal woman, received from Zeus a box she was forbidden to open. The box contained all human blessings and all human curses. Temptation overcame restraint, and Pandora opened it. In a moment all the curses were released into the world, and all the blessings escaped and were lost-except one: hope. Without hope, mortals could not endure”

Jane

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Phew, I’m almost exhausted after waffling on so much but it has helped me make sense of some of the angst I feel when I’m down. So, free counselling on BCC- Great!
Perspective is right. I know of a young man who died tragically last week in an accident. It happens. I don’t want to mention that double-decker bus but hey!
Jane, thank you so much for the quote as well, it means a lot to me and I will remember it for sure when things feel bad.
Very best wishes to everyone -primaries, secondaries and anyone whose loved one is affected, we’re all in it together.
Have a lovely weekend.
Anne x

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I find the since my bc diagnosis negative emotions strike me like bats whizzing around my head
in the dark. Sometimes I feel perfectly ok and my cup is pretty damned hopeful, other times, it’s like being physically struck, and I have no idea where it came from, or what’s changed from yesterday to today.

If I have a coping secret, it is simply not to think about it. Rightly or wrongly it mostly works for me, and as herceptin is my life line at the moment, i am hopeful that upon disease breakthrough there is another drug that will take it’s place as my lifeline.

During chemotherapy the medics wanted to put me on anti-depressants - that seemed to be the dun thing to do. I resisted because I felt I was only displaying the appropriate amount of emotion when faced with this diagnosis, but during one week of chemo, I cried for a solid week and couldn’t stop, my GP visited and put me on antid’s that day, although I still felt resistant. At the end of the week the tears disappeared, as quickly as they came, and I felt my normal self, far far too early for the anti d’s to have worked. It is still my belief that that was some kind of chemical reaction. I’m still on those tablets and don’t really feel the need to see if i feel more miserable or just the same off them, but i am very aware at the pressures i felt to conform, and not walk around being potentially emotional and messy.

Most people i know cannot believe that i have a terminal illness, because i seems far more energetic in personality and drive, than most, but it seems it’s not only the sloths or the dull that get cancer, - in fact i don’t think i know any slothful dull people who have cancer! (I may have stumbled on the cause here).

Although I come on this site mostly daily, and i’ve seen many die, some incredibly quickly and some who boomerang back from the brink, I still have great personal hope that my time is not yet up (I do hope that is not tempting fate) - except when i am exhausted, in pain or awaiting a scan.

Um - I’ve had dinner in the middle of this post, and i’m embarassed to say i’ve entirely forgotton my point.