Sorry! Just need to sound off.

Hi there,

After all this time of staying positive etc, I just need to sound off, hope you don’t mind… After being diagnosed with secondary’s to liver and skin mets in march and now after having chemo (carboplatin) and Xeloda i feel like I’m getting nowhere. Everything is just stable and I hoped there would be more progression by now. I just feel very low, emotional and want this nightmare to end, just want to be normal again!! Feeling so jealous and angry about other people who moan about day to day things, and this is so out of character for me. Sometimes it’s hard to even talk to your best buddy’s or family about it as although they care, they are not going through this themselves. I just needed to sound off to people who are going through this same horrid journey. I know that i will battle to the end for my husband, 5 year old daughter and family/friends, just wish I could have some positive news.

Hi Juls, I couldn’t just ‘read and run’ and even though I don’t have anything useful to say, just wanted to send you a cyber hug. Being positive for other people is flipping hard work, and we all need places and spaces to vent. Hopefully one of the secondaries ladies will be along soon and able to give you some insights about chemo (btw I don’t think you mean ‘progression’ as I think that’s exactly what you don’t want, it is usually used to mean getting worse/more areas). Take care and feel free to vent any time.

Hi Juls
Like Revcat I couldnt read your post and not reply, I have primary BC so not in your position but I know how emotional and lost I feel at times so for secondary ladies it must be a darn sight harder … I wanted to just say that anyone living through this nightmare has the right to sound off whenever they want , stay strong and be positive and all that jazz is all very well for people not living in our world to keep saying to us and I get it daily !! but sometimes I just need to have a bl**dy good cry and a rant, I pray that everything goes well in your treatment and send you a massive cyber hug

Take care Janice x

Hi Juls,

Another big cyber hug on the way. Moan all you need to - we need to let go sometimes and where we dont get judged for needing to fent.
I too get fed up with folk moaning about having to day to day stuff i cant do. But as you said , our family cares but they really dont know how hard it can be.
I’m not long Dx and still dream this is a nighttmare and I’ll wake up. I guess we just have to bet used to the new life.
Hopefully the chemo wil do its magic and you will feel better soon.

Best wishes , Glo xx

Hi Juls,
Good for you have a rant - you deserve it. It is hard being bright and cheery all the time. I have days when I feel like bopping the person who smiles at me and says positive thinking will get you through. We all need a cry and wail to purge the fear for a while.
One I find hard is hearing peopple moaning about there next birthday OMG I will be 50 or 60 or whatever I keep thinking well atleast you can take your next birthday for granted. Reaching 60 will be a bit of a push for me.
Goodness I have had a rant too!!
Cyber hugs to you

Hi Juls

I’m all for a rant (or five). I’m sure venting is therapeutic.

I was diagnosed with lung mets from the start and have had 4 x EC and 4 x Taxotere with no shrinkage so far - like you things are stable but not improving. Of course I’m always relieved that things aren’t getting worse but what I really want to hear from the onc is something along the lines of “oh my goodness I’ve never seen shrinkage like it! You’re on the way to a miracle cure. And what’s more this particular chemo will make you beautiful and rich”. Well a girl can dream can’t she?

Good luck with the chemo and I hope you get some super positive news soon.

Della x

Hi Juls,
I was diagnosed with secondaries to lungs and liver in April this year and so know how you feel. I have been having weekly chemo (Taxol and Avastin) for 3 months now and am so fed up with feeling rough all the time and having only a couple of days each week when I am able to do things. I have had 2 scans so far with the first showing good results and the last one showing that things have improved slightly. I was disappointed with these last results which mean that I have to continue with the chemo. It’s very hard to accept that it’s a slow process and I find that the only way I can deal with this is by taking control myself. I figure you have to throw everything you possibly can at it, not just rely on the chemo. I have already drastically changed my diet, following the Anti-Cancer diet and Jane Plant’s diet. “The Cancer Journey: Positive Steps to help you heal youself” is also an excellent book to help you gain control. This book talks about visualisation which is an excellent way to help you feel more in control.
It doesn’t mean that there aren’t days when I’m not down and I just go with it because I know that the next day I will probably feel better and feel grateful for what I already have. You have to try to keep believing for yourself and your family. I have children too and its for them that I am doing everything that I possibly can to beat this thing.
But as everyone else says it’s good to have a rant and this is the best place to do it. I hope you start to feel better soon. Take care,
Rawlie x

Couldn’t just say nothing, massive cyber hugs to you and yours. Venting on here has kept me sane all the way…you carry on girl it’s good to let it out. M

Ditto to all the above replies,we cant always stay strong,best wishes and hugs to all,dont know what else to say except we are all on this journey together.xx

Oh, Juls! It’s c**p, isn’t it? Some days, we just need to scream, cry and let it all out so that we can regroup and come out fighting again. I hope that tomorrow will be a better day and that you’ll get news of regression soon, although “just stable” is pretty good, too.

Sending big hugs to you xx

Juls, I can’t say anything about what Carboplatin adds to the mix but I am also just stable after 3 cycles of Xeloda and my onc is happy with this as she says it’s a slow-acting chemo so that may be good news for you too. I know how hard it is as we all want the miracle shrinkage.

To you all,

Thanks for your encouraging words. Am feeling better today and just went into a dark zone! I think I am struggling to come to terms with this more being young ( well young to me being 38), and having no real support from where I live, doesn’t seem to be many of my age group to meet up with. My daughter being only 5 struggles to understand how tired I get and why I can’t play with her sometimes. Xxxxx

I can’t imagine having to go through all this with a little one to look after. I’m 41 and don’t have children, but struggle to look after my cat some days, let alone another person!

I’m glad you’re feeling a bit better today and hope that things will get easier on you once your daughter is back in school and you’ll have chance to rest a bit.

It can be so isolating to have BC when you’re young and to have secondaries, but the two together really is a double-whammy and you’re right, there is very little support about. Have you tried starting a thread for younger women with secondaries in your area? It may be worth a go. If not, there’s always the cyber-support you get here…

Sending more hugs xx

Hi juls1974

I am pleased to read you are feeling a little bit better today. I just wanted to mention to you about the Secondary BC live chat on a Tuesday evening from 8.30pm to 9.30pm. Here you can talk to other people in a similar situation to yourself, on-line in real time. This may be helpful in allowing you to come to terms with your diagnosis as well as preventing you from feeling isolated. To join in just log in and click ont the live chat link, which takes you into the chat room, where there will be a facilitator and a nurse to assist in the group discussion.

I hope this will be helpful to you.

Best wishes Sam, BCC Facilitator

Juls we all aloud a rant at whenever we need one !! Being strong all the time and putting a brave face on things is hard going. I was dx only in june this year with secondary about to strart chemo this week. I am wanting fast fantastic results and who wouldnt …the differance I feel that weights me down at times is that first time round I always knew there would be an end to the treatments I never doubted it I just thought life on hold for a year then away I go !! Now I know that will never be the case and if one more person says I am brave I will bop them !! I am not brave if I had the choice I would run the other way …So no I am not brave just have no flippin option .
Glad you feeling better keep coming on here so much support
Hugs and love to all xx

Jules, you wouldn’t be human if you weren’t fed up with the ruddy awful hand you’ve been dealt. When you also endure treatment without any perceivable benefit, the unfairness is multiplied. The only plus I can come up with is that it could be worse - you could have endured treatment and still had progression (but I appreciate that is rather a lame point).
I’m actually with Historygirl on this one (and incidentally I think a list of what we all wish we could be told would make for an interesting/amusing post). Personally, I would like my Consultant to say, guess what, Imperial College have just discovered a cure for Breast Cancer, and we would like you to be one of the first to benefit. Who knows, maybe they will. Guess that’s what we all have to hold onto isn’t it?