Introducing myself SO LONGWINDED SORRY

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stressmagnet
stressmagnet Member Posts: 11

mods please move this if I've stuffed up and posted in the wrong place*

Hi everyone,

I've been a lurker and sporadic poster in the BC forums for approx 10 years or so.

I'm a 56 year old single mum to two fantastic teenage daughters, a loveable but slightly dim Chocolate Labrador and I live with my sister who moved out from our family home in Calgary Canada to give me a hand. (I've got two more younger sisters back home in Canada which will always be home to me.) I've lived here in NSW Australia for 20 years but I've still got a Canadian accent! :)

I was diagnosed with inflammatory Breast Cancer in July of 2008 - stage IIIb at the time. After doing firstline chemo; I battled a septic port with an accompanying coma and spent the last ½ of 2008 in Gosford Hospital - learning to walk again. When I was deemed well enough - I had a double mastectomy and then went on to do almost every chemo drug in the breast cancer protocol. Along the way, it was established that my cancer had become triple negative. I hit the carboplarins and taxoteres hard and for a brief moment in 2011, I was cancer free and went back to full time work. Unfortunately I had a recurrence in my supraclavicular nodes and so it's been basically none stop chemo for the past 7 or so years — with the odd short break when I waved a white flag.

I had a great run on Xeloda for 3.5 years, and then had to switch to Eribulin due to Mets in my spine. I've been doing Eribulin for the past 2.5 years and tolerated it well.

Unfortunately (and there's ALWAYS an 'unfortunately') on my last visit to my Onc about a week ago, she discovered greatly enlarged cervical lymph nodes and an annoying skin rash has turned out to be skin Mets. I had staging scans last Thursday sandwiched in between chemotherapy. I don't know the results yet.

To add insult to injury, I appear not to be eligible for any of the current immunotherapy trials. This is a real blow as both my Onc and I reckon my strong immune system is what has kept me in such great shape - given that both of my cancer types have abysmal prognoses and I've confounded my cancer team to this point.

So here I am.

I've been living with incurable cancer for the past 10 years but it looks like the end of the road may be in sight.

I'm here, talking to you in the hopes I can find some new friends and some much needed emotional support from women who really understand what kind of thoughts are running through my head and how life around still trundles along with two teenagers, no matter how much you wish it would stop so you can catch your breath and sort out your head.

It's 330am on a Monday morning for me. In 3 hours I'll be up to catch a coffee with my 15 year old as she goes off to year 10, and then my 18 year old will want to fill me in on her plans for the rest of her gap year and why boys her age are morons.

Tonight my sister will be home and since she has decided to adopt denial in the face of the latest news - I will be putting on the plastic face so that she and my daughters don't have another miserable evening.

Anyway - here I am. I swear too much but I will do my best to keep it in check. I'm looking for anyone who has been where I am right now and come out the other side with their sanity and relationships intact.

I've secretly organised a visit from palliative care but I'm sure there's other things I could do to make the coming months or years (!!) better for my kids and my sister. And by "the other side" I don't mean a miracle cure, just acceptance.

And yeah, I need a safe place to articulate all the fears and waves of despair that keep crashing over me.

I promise I do have a dark sense of humour and I'm not "precious" about much in my life. I'm the person my friends come to for advice and asskicking should they be warranted. And yet, they still love me. Go figure.

I do some serious volunteer work for a small non conformist breast cancer charity (so I'm not as self absorbed as this post makes me appear, I promise.

Looking forward to meeting you all.

Lu

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Comments

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited September 2018

    I'm sure there will be many who will post in reply to you. I know for sure you've come to the right forum. I can tell you, your post was not too long. I'm quite an avid poster and some of mine have been super long. I've whined, I've asked too many questions, I've had a very bad attitude and everyone here is very supportive, no matter what. So, no worries or sorrys needed. I've also encouraged, made jokes, told funny stories shared pics and poked fun at myself. I've received encouragement, information, shared feelings, etc. We get it.

    I'm in a vulnerable spot right now, too. But, I have no advice for you. Even though I've had BC and MBC 26 years, I'm in a place where I do have options. I just had my first progression. Just found out Friday. So, I'm needy. I don't have a firm plan yet for this new event. I'm in limbo. I don't like limbo. But, I've learned so much here that I know I will have a plan within a month. I'm not where you are so I don't have words of advice.

    I hope you hear soon from some of our ladies who are in your shoes. 💞

  • Tina2
    Tina2 Member Posts: 2,943
    edited September 2018

    Welcome, Lu. You are definitely in the right place!

    Know that this is three-day holiday weekend in the US, so you may not get as many responses as you would were it not vacation time.

    Grannax, do you mean your first progression after 26 years of MBC or after 26 years of BC and MBC combined?

    Tina



  • Grannax2
    Grannax2 Member Posts: 2,551
    edited September 2018

    Tina2. It's my first progression since most recent DX of MBC. That was 20 months ago. I/F. So, basically I'll be starting my second line TX since IF and y90 failed. Maybe another y90 for new liver met and maybe AA for new targeted therapy.

  • Daniel86
    Daniel86 Member Posts: 271
    edited September 2018

    wow Lu, you are quite the warrior. 10 years with IBC and TNBC!! You are something...

    Do you have a way to get a second opinion? There might be a way to.get you into a clinical trial if your doctor does a little pushing. Some other people from the boards seemed to benefit from a more proactive approach coming from their onc. Also, if you dont mind sharing, can you divulge what chemos you tried? There might be something else. Not to insult your doctors but sometimes their knowledge is a little outdated.

    You sound like a really cool person. Stick around please. The ladies here are a saving grace

    Daniel

  • SheliaMarie
    SheliaMarie Member Posts: 302
    edited September 2018

    Lu, I’m thinking I must’ve missed something. Why are you assuming this is the end of the road? I understand you have progression, and unfortunately clinical trials aren’t an option, but that doesn’t mean there are no other treatment options left for you.

    Xo - Shelia Marie

  • stressmagnet
    stressmagnet Member Posts: 11
    edited September 2018

    Hi ladies - thanks for replies.

    I'm thinking this is the end of the line for me because I've done every chemo drug in the breast cancer protocol. Here in Australia - it's a pretty rigid path you walk once you're in the chemo machine. And I guess too, by my oncologists face when she spoke to me.

    I'm having a hard time doing anything today but watching crappy television.

    More later, and thanks

  • illimae
    illimae Member Posts: 5,710
    edited September 2018

    We’ve got a great group in the “my life...” thread, if you’re interested and of course there are many others for more specific needs/topics.



  • vampeyes
    vampeyes Member Posts: 1,227
    edited September 2018

    Hello Lu,

    I am a fellow Canadian eh! :) I am sending you great big Canadian HUGS! I wanted to let you know that I am here for you along with the other girls, unfortunately I can't help much except in the support area. Here anytime you need an "ear". xxx


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