Newbie, age 41: Mets since 2005

Public Archive
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Yeah 2005. I’ve been living with this burden for 3 1/2 years now and miraculously am a chemo virgin.

Right now, I’m posting here because on the whole, since that fateful day, I’ve been fighting, battling, putting on a brave face, being positive, protecting family & friends from those dark thoughts that hit me like a cannonball in the chest and I’m sick of it!

I’m sick, tired, angry (oh, so goddamn angry) and resentful that my life has come to this and that there is so so much more in my uncertain future to face up to.

Does anyone else feel this way? Are there any of you out there who are sick and tired of being bolstered up, made to feel that they must be relentlessly and tirelessly positive and upbeat about their situation? Because right now, at this period, I’m not, and I’ve decided to shout about it from the rooftops, because I don’t think enough of us admit how hard it is.

I spent the first 6 months of this year watching my father die from liver cancer. He was 71, fit and well, and it took him quickly (lucky, some might say). During this time, my hormone therapy stopped working, so I’ve had 2 changes of meds in that time. If the Faslodex doesn’t work come my CT in October, it’ll be chemo (of which I’m terrified).

I’ve started telling my friends I want them to agree with me that my situation is sh*t. They are flabbergasted. They don’t get it. They want to make it all better and I want to tell them well, you can’t, so just eff off.

Do I sound bitter??? Maybe so. So out of character. If you knew me, you’d know a strong willed, independent, feisty, quirky, determined and dark humoured 41 year old who looks a good 10 years younger. I got married in red and I didn’t give a hoot what anyone in the family thought about that.

So I hope you don’t judge me by this initial rant.
I hope you can see something, even just a little, familiar.

I welcome your responses with open arms…

N

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Hi Penelope9

Welcome to the BCC discussion forums you’ve come to the right place for some good support.

You might be interested in joining in our ‘live chat’ session tonight for those with a secondary diagnosis where you can chat to others in real time for an hour. The session starts at 8.30pm tonight until 9.30pm. If you’re interested just follow the link below for more information on how to log on etc.

breastcancercare.org.uk/server/show/nav.745

Hope this helps. Kind regards,
Jo, Facilitator

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Hi Penelope,

Have you scared the all off LOL! I hope you managed to get into the live chat session Jo was suggesting. Unfortunately they only seem to allow a limited number in there then shut the door!!

I think for some, for a time, the knowledge that you have to live with this **** disease can make you very angry and resentful. Maybe I have long passed that and can’t really remember how it felt. I was dx 19 years ago when I was 45 and I guess I have learned how to live side by side with cancer. I had many recurrences and new primaries until I got secondaries 7 years ago so haven’t had much of a break from it. I do have people tell me from time to time how brave I am, what an inspiration, how well I look blahdeblahdeblah. But I have always been straight with people and if I feel bad and having problems with pain I tell them that is how it is.

You do sound quite a live-wire and I hope as time goes on you will find the real you again.

Nice to welcome you and I hope you soon feel at home here.

Dawn
xx

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Hi N

I am 41 as well, first diagnosed back in March 2007, but sadly far from a chemo virgin!!! I have a local recurance which maybe, just maybe if the chemo had gone in quicker, the surgoen for the portocath hadn’t been on holiday for a week and whatever else my brain comes up with, wouldn’t be incurable today.

I have to say I still find it all a bit if a bad dream, and part of me feels like I am going to wake up / step out of the shower / bang my head and it will all go away, I don’t really be dying of cancer at all.

I am fiesty and stubborn, pig headed, determined and mostly happy with my lot in life, excluding cancer. At the moment I am ‘lucky’ in that it is not affecting me too badly, but it is insiduous, it’s slowing me down and taking away the things I want to do in what time I have left. I am having chemo on days 1 and 8 of a 21 day cycle and still managing to work full time for now.

I am bitter, I am p**** off, I am angry, I am terrified and I am many other things… I think we have to be as some of those emotions give me the stength to carry on, we have to feel all those things but we also have to try and get on with life and living while we can.

Sorry you are having such a hard time.

Hugs

Nikki

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Hi,
we just met briefly in live chat it was a bit manic in there tonight.
I have been reading posts on here for 4 years but only started postinng in 2008 and only joined live chat this year it does take a bit of getting used to. By the time I have said hello I have lost where everyone is up to.
Lots of us can understand how you feel, the pressures that are put on us to smile and get on with things when we want to scream from the mountains 'But I am going to die of this sh–t disease and I don’t want to die not yet I want to live"
Welcome to the forum and give live chat another chance sorry you did not enjoy it tonight.
Love Debsxxx

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Hi penelope…I was diagnosed with mets in 2003 and was a chemo virgin until last year…just like you I was dreading chemo but I’ve been on Xeloda for nearly 16 months now and I’ve found it easier to tolerate than Arimidex…(and you keep your hair) not everyone finds Xeloda so tolerable but for quite a few us it’s a kinder chemo.
I think you will find we all feel exactly like you at times. When I was first diagnosed I couldn’t bear the thought of being ‘written off’ by the docs or anyone else so I made light of the situation. I don’t know if you or anyone else reading this has had the same experience but now I’ve been living a few years with this I think some family members think I’ll now carry on for years and years. Last year I watched my Mum die of ovarian cancer, at nearly 71. It’s hard for anyone watching someone die but when you yourself have a serious diagnosis I think it’s even harder.
You don’t sound bitter at all…just pretty darn normal to me. Welcome, you’ll find lots of support here…Belinda…x

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Hi
As the other ladies have said, welcome, and you are completely normal to rant and feel totally p*ssed off about the cr@p hand BC has dealt you (and us). This is the place to come as we all know how you feel whereas family and friends don’t. I agree with Belinda that after a while everyone else seems to think it’s gone away, especially if you’re not having any treatment that shows ie chemo. I also was a chemo virgin when I was dx with secondaries but I got through it (last year). It was tough, I lost my hair (as expected), felt rubbish and then had to cope with all sorts of other problems but I won’t scare you with those :wink: Chemo is do-able and I did manage to work during the middle of each cycle when I got over the main side effects. Please come on here and rant again if you need to, or ask advice about different treatments etc - we’re a helpful bunch. I hope you also can find the real you again, as said on here, and you don’t let this destroy the way you can lead your life.
Nicky x

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Hi,

I just wanted to say thank you to everyone who responded to my post this week. It has certainly been one of those weeks that has felt like a month, and I’m glad it’s the start of a new one tomorrow! I have been, and am still on, on a very intense part of this journey.

Debs - yes, that chat room was a strange one, I’m not sure if it’s for me, but I will give it another go. And speaking of screaming from the mountains, I did actually find myself driving in my car, screaming very very loudly on Wednesday and it has done wonders for all that anger (though I must remember to keep an eye on the traffic :@o)!

I am quite overwhelmed that so many of you posted just in a 24 hour period, and I still haven’t quite digested all your words, so I wanted to just say thanks for the time being, and I will hopefully be back again in the next few days.

It’s kinda wierd that there are few of you Nikkis/Nickys around too - as my real name also is Nikki :@)

Thanks again, speak soon,
Nikki (penelope9) x

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Hi,
when I first joined live chat I felt like I was at an AA meeting but I have got used to it and enjoy it. I think when you follow peoples post and you have a bit of an idea where they are up to with treatments it is easier. We are often told off for chit chat but in the past few weeks there has been a lot of loss and sadness so our live chat has not been as much of a release of angst, just angst!
Sending you cyber hugs and hoping you are adjusting to…
Love Debsxxx

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Hi penelope9

Just found your great post.

I’ve never tried live chat cause I can’t see the point of racing to type a comment before the next person also races in. Please tell me what I am missing someone?

Your post is a breath of fresh air in the very fetid world of advanced cancer. I have never been able to see what was good or positive about breast cancer, least of all the fact that young women like yourself are dying in large ignored numbers. Sorry but if I were say 37 I wouldn’t find the prospcet of living another 10 years with various unpleasant treatments before going to meet at age 47 the great Maker in the Sky. We need to aim higher.

I am already older: 60 and the opposite of being a chemo virgin (was never a sex virgin…perhaps there’s a link???) Have just about done the lot: AC, taxotere, vinorelbine, xeloda, gemzar, carboplatin, taxol, vinorelbine again, and now caelyx. The chemotherapies don’t work on my slow growing triple negative in the neck and chest wall, plus some skin mets. I am pretty unwell with it all, in constant pain from tumours pressing on nerves, have a useless numb arm and occasional hallucinations from painkillers.

Bitter? Oh yes

Fed up with Pink October? oh yes

I don’t see cancer as a journey. Life is the journey and cancer just got in the way and will kill me 30 years earlier than I expected. No wonder I am pissed off and angry. So we should all be…the goal should be to turn our anger into proper campaigning for rapid improvements in treatments so that all of us can be chemo virgins because there’s now a cure.

I too want my friends to stop blathering about and acknowledge my predicament. Some friends talk about me to each other but are useless at talking to me direct other than bland words about hoping I’m having a better day than yesterday. Strange but it has been easier with other friends who I knew less well before cancer. Guess its because the old friends carry memories and share history with me which partly dies when I die. There are no such burdens for the newer friends.

Jane

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I’d just like to say how helpful this has been to me…I have had all the feelings you all describe so well. i went to the oncologist yesterday and although my liver mets are getting smaller there are still 2 left, after 16 months of femara. i have to say that the oncologist was 'happy’but i cried for the whole day. i like you hate living with bc and secondaries, and because i look well and have had liver mets for 16 months now everyone seems to think i am ‘cured’ I WISH!!! Even though i am physically well at present every day is difficult thinking what this disease will do to me.
But as EVERYONE who DOESN’T have cancer say to me be positive…not always so easy!!
nora

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Hi all,

I’ve been meaning to get back on the forum for a few weeks now, but don’t quite seem to have got there. But here I am again.

It’s amazing to hear so many different stories and comments. I feel as if I’m just getting back to me after a long period of bereavement for my dad and facing up to another new stage of my disease.

I’m pleased that some my ranting has been of help to people, and also brought out a few other hellraisers! Good stuff! The fiestier, the better.

I’ve thought many times, especially lately, about setting up a support/meeting group, campaigning in the mainstream in some way, or just generally getting more involved in our common dilemma and the way it’s regarded in the outside world.

But therein lies the rub: it’s further involvement in cancer. And if I’m honest, I DO have times, sometimes prolonged, where I’m not engaging in any activities to do with cancer and I think about it very little. And I grab those days/times with both hands, run with them, and get out there and live my life. I can’t think of anything better.

And I can’t think of anything worse that having to turn up to run a support group or similar when I’m not having a “cancer day”. And because I know that right now I’m better off than I will be in future, and that the non-cancer days will become fewer.

So what do we do? Try and balance it? Stick two fingers up at pink October and (sorry for this, but…) the marathon runners ans try to get on and live. And enjoy.

I too have found that family and friends closest to me have been the hardest people to share info with. And those in greatest denial of my situation. But had significant exchanges with (amongst others) my builder and my dentist.

I told my therapist recently that I felt guilty that I hadn’t been back on the forum. She advised me to take as little or as much from everything and anything you might need at any given stage.

I think that’s great advice. There’s no time for me to live any other way.

Nikki