It's not all Kylie

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