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Maxine

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24

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  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
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    I'm a little confused with how to reply to you as there was no option of me replying to you from your words. Hopefully you'll be able to read this. I've only been on this BCNA site for a very short time so still learning on how to use it.
    Yes it does come as an awful shock to get a secondary diagnosis but from experience I've found the best thing is to go with the flow and deal with you feelings as they arise. I tried to push my meltdown, down for a week and it jumped up and bit me on the bum at the worse time. There is so much help and support out there, you don't have to deal with it on your own. I've had some people say to me "so how long do you have" and after I get over the shock that they actually did say this, I really want to say "well you just watch out for that bus" that could get any one of us at any time. You do have to toughen up, so to speak. I used to be a mouse until I had my second diagnosis, six years ago in August. Not any more. Maxine, you're not on your own and I have found this site fantastic. Theres so many people that have a kind word to offer, you take care and I'm sending you big warm hugs of support. Cheers from Annette
  • Jess_BCNA
    Jess_BCNA Member Posts: 475
    edited March 2015
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    Hello Maxine6755, Glad you have made a blog post and thank you for telling your story.

    There is an online group for Women Living with Advanced Breast cancer that you might be interested in.You can find it here: www.bcna.org.au/group/4218

    You could also use the site's search function to find others posting about advanced or secondary breast cancer (see above the main navigation bar where it says "start your search here" -- when the results page comes up, if you look at the right side of the page, you'll see if each result is a blog post, page, group, etc.).

    Hope that helps -- if you need a hand with finding your way around let me know.

    ~ Jess

  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
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    Hi Chrissey,
    We are such strong people, with all the challengers that are thrown at us and we beat them down. The continuous hurdles we need to jump and as you said we need to take each day as it comes and to take the bad days with the good and go with the flow. I was lying on the CT table being mapped out for yet again more radiation and I thought to myself, "what are normal people doing" then out came the tears. (not that I'm not normal), but I would love to be well and working and spending lots of time with my children and grandchildren without getting this terrible fatigue. I've stopped counting how many times I've been diagnosed with new mets, but most times I am silently distraught for the first couple of days of being told then have a day of tears. It's just how I except the news. I have met so many beautiful people since being originally diagnosed, it will be 12 years September. My second granddaughter was born September 26th and I was diagnosed the following day. I call her my little guardian angel. I wish you all the very best, cheers from Annette
  • Chrissey
    Chrissey Member Posts: 7
    edited March 2015
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    Hi Annette

    What a strong woman you are, you are right we are all so very strong not just for ourselves but for our loved ones around us. I really hope I'm here for the birth of any grandchildren, it's really keeps me going. But I must admit I don't think of not being here most days. I just wake up, get up and get on with it all.

    I sure do hope all your radiation goes well for you and that you don't suffer too much pain. We know what the burns at the end are like, not pleasant.

    My thoughts and prayers are with you.
    Christine
  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
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    Hi Chrissey
    I'm the same, love logging into this website and chatting.
    The new radiation treatment starts today, as they found a new met in my forearm and I will only be having five doses. I'm quietly confident I will be fine. I've had 60 doses of radiation all up on my left breast now chest. I've only coloured up a bit, no burns, thank goodness.
    I'm also waiting for the results of a CT on my chest/abdo, which I had yesterday. I get the results of that Friday, I have everything crossed that I don't have anymore mets. It's so nice to be able to speak to people in a similar place, health wise, and know that they know what your talking about and know they really want to listen. I find it a little difficult to speak to some of my family members and friends because you don't know how much or how little to say to them, I can quite often see it going over the top of there heads while trying to answer a question they've asked me. I don't blame them whats so ever, if I had the choice I wouldn't be where I am right now and wouldn't be talking about it at all.
    Anyway Chrissey you have a great day and hopefully we can chat later, cheers Annette
  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
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    Hi Kerrie
    I'm the same, love logging into this website and chatting.
    The new radiation treatment starts today, as they found a new met in my forearm and I will only be having five doses. I'm quietly confident I will be fine. I've had 60 doses of radiation all up on my left breast now chest. I've only coloured up a bit, no burns, thank goodness.
    I'm also waiting for the results of a CT on my chest/abdo, which I had yesterday. I get the results of that Friday, I have everything crossed that I don't have anymore mets. It's so nice to be able to speak to people in a similar place, health wise, and know that they know what your talking about and know they really want to listen. I find it a little difficult to speak to some of my family members and friends because you don't know how much or how little to say to them, I can quite often see it going over the top of there heads while trying to answer a question they've asked me. I don't blame them whats so ever, if I had the choice I wouldn't be where I am right now and wouldn't be talking about it at all.
    I was in the Dragons as well and did enjoy it but it's so cold here in Central Victoria that I often didn't go or there was some other reason why I couldn't go. I never raced in any regattas so never had the competitive streak happening. I was more in it for the social side of it, I'd be happy if we could paddle our way around the lake whilst chatting and having a cup of tea. lol At the moment I am going to our Wellness Centre, which is fabulous. I do Art Therapy and yoga. Love it.
    Great talking with you. cheers Annette
  • Mozzee
    Mozzee Member Posts: 23 ✭
    edited March 2015
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    Hi Annette
    Like you I have done this A about!! I just went and read your blog and then went to mine "zero". I'll get to that another day.
    Are you having Rads for pain relief or is it to stop progression? Hope it all goes well, and also fingers crossed for Friday. The waiting is the pits,
    It's a shame about the Dragons, I'm not competitive at all just out to enjoy my new found zest for life. In October this year a group of us are off to Sarasota Florida for an international event. Sooooo wish we could go now.
    If you are ever up Penrith way we can definitely organise a paddle, chat, coffee. We use the Sydney International Regatta Centre so just say the word and we are away. Take care. Kerrie
  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
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    Hi Kerrie,
    The radiation is for pain as well as stopping the progression. Yes the waiting is the pits and thank you for your support
    About five of the girls are going to Sarasota Florida from the Ballarat group. Wow, I think I'd still be in the group if I was in your area, not that there's anything wrong with our beautiful lake Wendouree, just damn cold.
    I'm addicted to this site, I love to reply asap if I can. But I must go as housework awaits then a quick catch up with my daughter and g/daughter before I need to be at radiology.
    Cheers from Annette
  • Maggiemaw
    Maggiemaw Member Posts: 39
    edited March 2015
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    So good to hear how you are all going and how you are getting on with your lives despite the anxiety and fear and ongoing treatments. It's always with us and sometimes it's hard to focus on the good things.  Scans, treatments, appointments etc are constant reminders of what we are coping with.

    Today my husband and I went to a very large shopping centre in Brisbane and the neuropathy in my feet was a constant reminder of my illness and made me realize that big shopping centres are not for me anymore - on Shanks's pony anyway.  I'm in the middle of my chemo cycle and low blood counts probably also contributed to my limited walking - big rest this afternoon.

    I went to my support group meeting yesterday and it was great to hear one of our girls talking about her trip to Morocco and France.  Six of our group met for lunch on Sunday and we had a lovely time.  We are fairly spread out geographically but have now decided to meet each 6 weeks for lunch and we have named our lunch group The Dragonflies.  Do you all know the piece on the Dragonfly - we have adopted it as our ?motto.  It is a theme that runs through our group and we have 2 get-togethers each year put on by our government funded support group.  One of our lovely ladies always gives us a gift with something that has a dragonfly on it - we are gaining quite a collection of items which features a dragonfly.

    Trying to bring some normality to our lives isn't always easy.

    Many hugs to you all,

    Maggie

  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
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    Go the Dragonflies. Good on you Maggie, life is a struggle at times but as I've said, we are a very strong group of people, and are very supportive to one another.
    I have a couple of little posters of dragonflies on my fridge which I received from BCNA, they are just beautiful.
    I was suppose to start radiation on a met in my arm today but one of the machines had broken down so will now start tomorrow. The radiation people were so apologetic, it didn't bother me whether it was today or tomorrow that I started but they were so nice.
    Sounds like you have a great supportive group going there! Take care Maggie.
    Cheers Annette
  • Mozzee
    Mozzee Member Posts: 23 ✭
    edited March 2015
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    Hi desire. This is your lucky day!! There is a Support Group that meets in Penrith at the Rowing Club 2nd Tuesday of the month.
  • Maggiemaw
    Maggiemaw Member Posts: 39
    edited March 2015
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    Hi Annette,

    Hope the Radiotherapy goes well tomorrow and does what it's meant to do.  How good  to be able to share information with each other.

    Maggie

  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
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    Hi
    Well I had my first round of radiation on my arm then I followed that up with a session with social worker, Art therapy and last but least a yoga session. I should be feeling good but I'm a little flat, possibly because some things were brought up that I continually keep pushing down. Not sure. No pain with arm yet but they say it could get painful by the second round. It's much stronger than what they do on your chest/breast. I've got the panadeine just in case. Next round is tomorrow in the afternoon, but I have an appointment with Oncologist at 10 in morning so I'm hoping her news isn't to bad. Getting my hair done in between appointments then see Radiation Oncologist after radiation then head to Melbourne for a really flash night out with my husbands work. It's always much better when it's a free night out as well. Hope you've all had a good day.
    Cheers Annette
  • Beery
    Beery Dragonfly Posts: 64
    edited March 2015
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    Hi Maggie

    Yes, currently I have seconday bone mets along my spine after initially having the same treatment as you for burst/fractured  L3.  I had breast cancer 13 years ago. Had lumpectomy and sentinal lymph node taken followed by 6 weeks radiation , and 5 years of tamoxifen.

    At the moment I'm taking exemestane, 5mg Afinitor, and  Zometa injection monthly. I'm trying to keep on working but have found that with all the travelling to and fro that it is taking its toll, both health & workwise.  Have advise boss that I want to reduce my hours since my last episode with a reaction the the oral chemo and ending up in hospital for a couple of days. Still waiting for replacement to train up.

    It really good to see all the support given on this site....as I have been doing a lot of browsing & reading a lot of blogs etc.  I live alone.  Children live interstate but are just a phone call away and have no hesitation to come to me if I need them.  I have other family close by which is good especially when I don't feel capable of driving the distance for treatment and onc appointments. My main concern is find as much information about possible side effects of Afinitor and how people coped with them. What did their onc do and what is the best way forward if this method of chemodoesn't work.  It really is scary and I'm a bit of a control freak, which doesn't help as I like to know the pros and cons.  Can anyone help.....Sue:-) 

  • Annette joycie
    Annette joycie Member Posts: 26
    edited March 2015
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    Hi Beery,
    I was on Aromison and Afinitor for seven months. The Afinitor has now stopped working resulting in a new met in my arm, which I started radiation on today and I will be having 5 rounds. I'm getting the results of a chest/abdo CT tomorrow so hoping things haven't become any worse.
    I started on Afinitor 10mg and it did knock me around terribly. I felt dreadful and my mouth was full of ulcers. I had to stop taking it for two weeks while the ulcers healed. I then went onto it at 5mg which was much better. I read somewhere, I think it was in the info I printed off from the computer describing Afinitor that it will work somewhere between 4-11& half months. Seven months is average. I feel that you just have to give everything a go and just hope for the best. Cancer is very sneaky and finds its way around these medicines so it's a case of giving it a run for the money. I'm probably going to start on Xeldo as soon as the radiation has finished, I will find out tomorrow. I hope this info helps a little. Wishing you all the best.
    Cheers from Annette

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