IS THIS A NIGHTMARE AND WILL I WAKE UP SOON LOL

JannyBJannyB ScarboroughMember Posts: 4
edited December 2016 in Newly diagnosed
3 weeks ago I was a 58 year old business woman working 2 jobs and looking forward to a holiday this weekend, since then I've been diagnosed with DCIS invasive breast cancer, had a lumpectomy one Friday, then got a call from my surgeon in the middle of my 59th birthday party to say we needed another op last Friday (a week later) because the cancer was too close to the margin of what they took out. The good news is it's not in my lymph glands and I can't believe that I am actually saying to friends, it's all good if the genetic test comes back negative I only have to do daily radiation for 6 weeks and take tamaxifen for a few years. To even consider in my own head this is a great thing is like some weird movie of someone else's life, how far from normal everything has become.

I feel numb as if this is not really happening to me and it is a crappy nightmare that I will wake up from. To top it off my neice died of exactly the same thing so I have seen the worse case scenario. I have been diagnosed early they tell me so I should not think her experience will be mine.

I have used my cruise holiday as the goal that has kept me going, I will crawl up that gangway on my knees if I have to on Saturday,
I had $10,000 in the bank 3 weeks ago and although I am a private patient with the highest insurance it is the expenses that have been more of a worry than anything. I thought I would not be out of pocket at all and have bills up to about $7,000 so far (they have not all come in yet) and will be lucky to get $3,000 back. When an anaesthetist charged $900 and NIB payed $75 back I rang them to find out why they are paying such a small refund - he is charging $600 over the set fee. I went for a genetic test $900 and came home to the first of 2 pathology bills and it is $1450. With 2 mortgages and being off work I am going broke very quickly. I am going to post the list of costs and refunds once all the bills are in so other people can have a big think about whether it is worth having private health insurance. NO ONE TELLS YOU THIS FINANCIAL STUFF TILL IT HAPPENS TO YOU. I will be going public for anything else involving breast cancer or anything else for that matter. I have however had a wonderful surgeon (recommended by a friend at work) who has made my breast look really good, she has been totally worth it.
The beautiful part of my story is that people all around the world have prayed for me, my ex sister in law's church in Ontario Canada held me up in their prayers which touched me greatly. I've walked with God all my life and I am continuing to do that now (although I am not wanting to meet him in person for a few more years LOL).
Thanks for reading my rant, I needed to get it off my chest :)

Comments

  • NadiNadi Member Posts: 505
    Hi Janny. So sorry that you had to join us here but welcome to this network. It's such a surreal experience when you are first diagnosed. I understand feeling numb. I got the call from my doctor October last year and didn't quite believe what she was saying especially since I never felt sick. Having BC just derails everything. It's good that they caught it early and  here's hoping that you can get back to normal sometime soon. I find the financial burden of having BC isn't really talked about a lot. I too have private health insurance and went public for radiation but private for surgery and chemo. All up I am out of pocket about $11,000 for medical expenses. With lost wages it's about $48K which has been very stressful. Having a cruise to look forward to sounds great. Where will you be cruising to? 
  • KarenhappyquilterKarenhappyquilter Member Posts: 188
    Hi Janny, I think it takes some time to process we have cancer.  Once it is found we are quickly into treatment and then often the treatment takes so much out of us. It's months down the track until we feel well enough to think hard about it.  

    I wanted to mention just in case you are not aware that banks have provision for people who suddenly have financial difficulty paying their mortgage.   So well worth talking to your bank if you haven't already done so.

    It's great news you don't need chemo.  I am now taking tamoxifen and find it ok.  Good luck with it all.  Karen
  • Tracey62Tracey62 Gold CoastMember Posts: 298
    Hi Janny, the one thing that got me through my bc/chemo/radiation time was knowing, really knowing, that when God says he will never leave us or forsake us, it means he will be with us every step of the way. Even through the shock of initial diagnosis, through the financial difficulty, the disruption to our busy lives and the challenge to how we identify ourselves by our work or our bodies or our life experiences. You are never alone. If you should decide to go public for the remainder of your treatment, be encouraged, they provide good treatment and at no expense. Even now 10months after finishing rads, my Onc still follows me up every 3 months and covers all my health issues not just the defeated bc. You will make it through this challenging time, there's a lot of good living, joy and peace waiting for you on the other side. God bless and keep in touch xx
  • Ann-Marie_BCNAAnn-Marie_BCNA Administrator Posts: 1,139
    Hi @JannyB, just wanted to welcome you to the online network. Sorry that you have found yourself here but you are surrounded by an amazing community that will be here to listen and support you.
  • socodasocoda LeumeahMember Posts: 1,336
    Hi Janny, Can so totally relate to it all seeming incredibly unreal. I still feel like I should be walking around like Vince Sorrenti shaking my head and saying "I don't believe it!!!!!" But its all true. It is a new reality.So Welcome to the site and know that here we all understand. You can come here to rant, scream, laugh, cry and know that we will be here to cheer you on, sympathise, support you in any way we can. Hope your cruise is absolutely sensational. You know were going to expect pictures now! :) Let us know how your doing. Xx Cath
  • JannyBJannyB ScarboroughMember Posts: 4
    Thank you beautiful ladies, you are all very kind. It's 1.46 in the morning and I've been up at Emergency with my Mum who had a fall and hurt the back of her head at the Nursing home. She is going to be ok and I can't believe the timing of this. I booked the cruise months ago for Dad, my daughter 32 and my boyfriend and I because Dad's prostate cancer has metastasized to 3 places, he is 87 and I really wanted him to have a good holiday while he is well enough. I've had to tell the nursing home not to call him tonight and to only call my Sister or myself or he's likely not to get on the boat tomorrow. Love to all x
  • NadiNadi Member Posts: 505
    Oh Janny, you have so much on your plate! My Dad is 78 and has dementia. He wanders and is a danger to himself. My mum is in a wheelchair. Neither are in a nursing home yet but are not far off. It has been such a struggle caring for them while going through breast cancer. I had to beg the rest of my family who live interstate to step up as I ran myself down quite a bit while having treatment and caring for them. In the end I was so exhausted I had to stop working. My recommendation is to make sure you ask for help when you need it. Gather your resources. Don't deplete your own energy reserves. See if you can get your sister to do more for a while. And come on here and vent any time you need to. Here's hoping you all get on that cruise tomorrow.
  • socodasocoda LeumeahMember Posts: 1,336
    Wise decision Janny. Your dad may be a bit upset when told about your mums fall but in reality there's not much he would be able to do that you haven't done already. You're going to sleep incredibly well your first night on the cruise but I think excitement will keep you going at least until the sun sets and you can't see land anymore. Enjoy, relax and make the most of this very precious trip. Xx
  • JannyBJannyB ScarboroughMember Posts: 4
    Thanks Nadi and Socoda, we are nearly at the ship x
  • InkPetalInkPetal You are valuable, beautiful, extraordinary.Member Posts: 431
    I feel you with the crush. A year on and I stopped counting once it ticked over $11000, with help from Medicare deducted. GOOD GRIEF. Breaking Bad is making more and more sense :lol:.

    Enjoy the cruise Janny! xo
  • Kim RKim R Narrabri / Salamander BayMember Posts: 146
    Welcome, there are a great bunch of caring women on this site, who share information and experiences freely, I couldn't have lived with out them this past 18 months. all the best, fantastic news that you don't need chemo.
  • melclaritymelclarity Member Posts: 2,255
    Hey Janny!!

    Whoa!!! well I think we can all totally relate to the entire situation! I had BC 5yrs ago DCIS, I was already however in the system at Freemasons yearly checkups since 36 as my Mum had BC at 40 but no other family history. I had to have surgery too, and radiation. Now I have private health cover and NIB too. BUT...for radiation it cost me nothing...I went public for that as its no different. Last year I had a recurrence in the same spot! inspite of radiation and tamoxifen of 4yrs. Another Surgery, and my only out of pocket was my excess and yes the Anaesthetist they are CROOKS!!! did  you know most charge 3 times over the scheduled fee???!!! and correct thats why you get nothing back. I too had to have Gene Test this year and $900 out of pocket. WRONG!!! on so many levels when Id already had breast cancer and didnt qualify for 'Their' criteria. Ridiculous! I too have an amazing Surgeon who thinks of everything!! so I am now facing a mastectomy/reconstruction, he also works through public too, so he sent me to a Plastic Surgeon who works with him. So the Plastic Surgeon sends me a quote no joke $9000 stating Id get back about $3,900 BUT THEN the Anaesthetist was $600/hr x 6hrs for my surgery so going private I literally would be out of pocket nearly $10,000 JOKE!! so...I have THE best Surgeons but going public and Im Category 1 urgent but because of Christmas I said 2 is fine which puts me in a 90 day bracket. I will have NO out of pocket. So you are correct. I do have to say, im glad for my health cover I wouldnt be without it, but where you can go public. Im infuriated to be honest, I DON'T ELECT TO HAVE A MASTECTOMY/RECONSTRUCTION, its NOT A BOOB JOB!!! yet most health funds deem it that way! 

    So definitely do your homework!! And know, from your diagnosis what you have shared, you are super early :) which is great! Big hugs you will get through it!! Melinda xo 
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