It's not all Kylie

That's what is so marvellous about these blogs. Being able to share stories, and compare notes - and to find out you're not alone. "...a trouble shared..."

If we keep on talking to each other and voicing our fears andour dreams and sharing the good stuff too we have half a chance of getting through this nightmare intact - whether that means surviving or not isn't necessarily relevant here, just getting through it. 

Keep on keeping on girls

magicmum

Hi just wanted to say thanks for the reply I know it seems a bit morbid but when you hear of others maybe not sailing through and having a few problems it sort of makes you feel less alone, weird I know but that is how I feel, sorry to hear of all your awful reactins, I have had a anaphlatic reaction to an antbiotice went blind for a short time and couldnt breathe, thought I was a gonner for sure.

Cheers Narelle

I didn't get a private one - I do that sometimes too Jac, they just wander off into cyberspace never to be seen again ! It's ok. Annoying when you KNEW you had put down some really good stuff and then you can't remember it.

I have spent my whole life bumping into things and ppl so if that gets worse !! OMG. You have to laugh.

My chemo was ok, but I have a migraine today (now I ask you, is that fair ?) so I feel like crap from that. I may be getting thrush in my mouth too so I'm treating in case. Otherwise feeling blaaaahhhhh.

I guess as far as the other stuff goes, we just have to count ourselves lucky that our husbands love us enough to hang round. I know some don't. I couldn't do it on my own :(

Take special care of yourself.

loads of love

Keitha

Yeah well no libido here either:-)

Just wanted to say don't get me wrong I think Jane m and Belinda did and have done so much for breast cancer! AND I feel that the exposure and high profile of breast cancer has now misled lots of people. Before my own diagnosis I was like many others and just thought breast cancer was breast cancer - I had no idea of the difference types and stages. That's why when 3 days after the diagnosis I was in the plastic surgeons office asking for immediate reconstruction. She kept saying she couldn't do it because the cancer was 'invasive'. In my mind at the time, I was thinking why does she keep saying 'invasive' - all I was focussed on was loosing my breast!

I guess my husband and I are just weary of the input of 'well meaning' friends, family and colleagues who we have to KEEP telling ' No I'm not in remission, NO I'm not better yet, No I haven't got a great long term survival prognosis.' Flippant 'you just have to be positive' and 'you'll be fine , they've come so far with cures'. I think people still find it so confronting to acknowledge that people do die! Even if they are positive!!! I'm sure Belinda and Jane were positive, but positivity is a way to live life AND it doesn't necessarily assure survival.

I admit I have felt very validated by my oncologist who in a joking way told me he has seen the most positive people die and the most bitter twisted survive. He tells me to drink wine, enjoy life and that the journey for some women is worse than others. In the beginning I thought he was too dismissive and joked too much but now after all the stuff I've been through I see that this is his way of coping! When I asked when I could get my portacath out, he did what he always does when he has to deliver bad news; he runs away and then pops his head around the corner and says quickly," chances of it coming back for u too high- u need it" and then he's gone and I'm crying and the nurses are pulling curtains around the HOCA chair.  

I want to shout from the roof tops- its not over til it's over! Your observations are of course right that everyone whether rich/ famous/ high profile still suffer - and they can still die! It's more the issue for me that the everyday person seems to forget this and focus on the survivors( not always a bad thing) but they also could validate the FACTS that not all of us will survive.

I don't want to not be here for my daughter. She is an amazingly intuitive soul.The day the onc told me he couldn't put me on amotose inhibitors because my sensitivity was too high and I would probably kill him or my husband ( his joke) if he put me on them, he also told me then that it means I have a 1 in 3 chance of not making the next 4 years, if I make 10 he feels that will be a great outcome and 15 will be amazing. My daughter will be 18. That was 2 years ago.

G was only 30 months old. That night she got me to sit down and she sat in my lap facing away from me, she wrapped my arm around her and looked up into my eyes and said" mummy you 're going to die aren't you." I hadn't said anything to her about the dr appointment. Of course my eyes welled up and I said" everyone dies honey, but not today and I'll do anything I can to be here with you as long as I can" Her response was " it's ok mummy, because I love you very much and it'll be ok" I still cry when I remember that.

If I didn't have G I would go off the #*+# tamoxifen and take my chances but I will endure and fight and encourage others to be vigilant, because no child deserves to be without her mum!

Sorry I'm a bit verbose- I wrote you a completely different response early tonight then I lost it/ deleted or whatever. Thank you for your feedback and money or love or positivity can't buy life and the last 2 things can make life meaningful, purposeful and money can help make it fun! Let's focus on what life gives:-)

Hi narelle, Thank you so much for your response and everyone else who has responded so positively- its only taken 2& 1/2 years to get to this place where I can take the time or have the energy to respond or even be on line. I totally empathize with your trauma at feeling you're being dismissed in the public system. It is so hard. There is no denying that this journey is a costly one if you take the private route.

I had written in a reply I just lost to someone else( can't risk looking her up - cos I may loose this post:-D) that we're out of pocket about $30 000 and that's without reconstruction!!! All the pathology cost a fortune and I asked if I could swap to public because of the cost but after some enquiry I was convinced that I had better options on private side. Not sure if that is true but I decided I had to stay in private.

Honey I so get your point about feeling ripped cos you don't have $1000's to spend. We are lucky to have public health in this country but no one should ever feel that if they could afford it they may get better care. Actually I have to say I have felt very supported by the 'chicks in pink' but not sure if the help is offered to public patients. As per the BCNA guidelines I won't get bogged down on my opinions on that! It's too upsetting.

I so hear you with the 'lucky one' - my friends call me the 1% - before BC, I'm sure I'll mention this again numerous times in different responses, but I seriously fall into that category. I get all the 'rare' stuff! It's got to point that I hate updating friends when it's more bad news.

Here's a snippet of just one of the 'rare'things that have happened on 'this' journey! After I had MX it was over Xmas 2009, I had to go back for 3 weeks getting breast drained. I have a hand written letter from the plastic surgeon who put skin expander in dated 25/12/09 telling me I had aVERY rare infection, and since I'm allergic to penicillin she had included a script that she hoped would work cos VERY FEW people have A bad reaction to the antibiotic. Well 3 days later I'm on my rug in our lounge unable to breathe! Of course I had to stop taking the antibiotic and hope that the infection didn't get worse. It didnt so that was a positive, but I think it did alert the surgeon to the fact that I really do have weird reactions to things!

I won't even go into the reaction to herceptin - that apparently has very few side effects- unless your me- in short I am now under care of cardiologist!

Hey I'm just watching 'silence witness' as I'm writing this - they're talking about fentinal ( the pain patches I'm on cos OxyContin stopped my bladder working and Norspan caused skin allergies) and saying fentinal is 80x stronger than morphin and people can die from having a reaction!! That's just freaky!

I don't know how far down your journey you are, but my husband wouldn't talk about it either for the first 2 years. I think it was so traumatic. He stuck to doing all the paper work and was initially validating of the side effects because he'd research them. But when things just kept being 'challenging' it got harder and harder and he kind of( well not kind of) he shut down. Again I'm sharing this publically because I think this is the unspoken experience of many couples. Women reach out and men close inward( big generalization I know). My husband has had more days off in the last 2 years from being ill than in our whole 22 years together. He internalized it all. And it didn't help that last year his dad was diagnosed with lung cancer and we nursed him from the day he was diagnosed til he died. It was very confronting for all of us

My husband has had no councelling- I've availed myself of heaps. Grief does horrible things to people. I'm sending a big hug to you and I hope you and ur hubby can find a place in the future where you can talk about how it is for both of you.

Thanks for your reply Take care- your not alone:-) Jac

I have no libido at all. In the beginning I'd make an effort for my husbands sake, but we have gotten to the point where neither of us bother any more! (my poor darling)

 In regards to the celebrity thing, they suffer physically, emotionally and mentally just as much as we do. Don't forget that we only see pictures of them looking glamorous because that's all they choose to share with us! I'm sure they have all had days of looking grey and feeling crap and miserable and vomiting and being constipated and very unglamorous. Belinda Emmett did a lot for awareness of breast cancer in younger people and lost her fight. Jane McGrath has done so much for women with breast cancer with her foundation and the breast care nurses. And every time someone famous gets the dreaded disease, it raises awareness not only for the public but for all the medicos out there who don't see it every day. They may have money and fame and all the trappings that go with it but they still get sick and can die just like the rest of us. Money can't buy you life.