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arpie's avatar
arpie
Member
3 months ago

Woohoo .... I signed off with my Onc yesterday

It is nearly 8 years since my lump was discovered in Oct 2017, Biopsy in Dec, Surgery in mid Jan 2018 .... 4 weeks of radiation & just over 7 years of Hormone Suppressing tablets .... and I am now officially FINISHED with my treatment!  I have officially been 'signed off' by my Onc!

Back in 2018, I originally started with a male Onc - who didn't really have any interest in treating me - his first question was "Well, what are you here for?" (He hadn't even looked at my diagnosis/surgery/Radiation history!)  Then he didn't believe me when I told him of my horrible side effects from the first AI that I was put on!  So when he went on leave & I was lucky enough to see his Locum (a lovely Sth American Onc.)  She immediately changed me to another AI (after a break of a few weeks) and 6 months later, to a third AI, that I then remained on for the next 7 years!  I also swapped over to her at that appointment, and have been with her ever since - she was also my husband's Onc!   
So never be afraid to ask about changing from one AI to another if you are experiencing nasty side effects. 
And if you don't 'get on' with your Onc .... consider changing them too!!! 😉

It is SUCH a nice feeling!  I thought I may become a bit emotional, but I was surprisingly cool, calm & collected!!  My Onc even gave me a big hug & sent me on my way, wishing me all the best!  She also said to Stay away from the Regional BreastScreen Buses and continue having my yearly mammogram and ultrasound at the facility that I've been attending for over 7 years now .... I have 100% faith in them.  Their specialist Breast Cancer Ultrasound operator is the BEST - and I've been able to request her on all my visits so far & will continue to request her on my upcoming scans!

hehe, I also had to confess to her that I had started weaning myself off the AIs from about Xmas .... as I was going to WA in May/June for a big Kayak Fishing Adventure ... and I wanted to be totally 'pain free' for that - and she said WELL DONE!!  (Technically, I should have stopped taking them after 5 years, but I had requested to stay on a bit longer for the extra 18 months as 'backup'!)  At the time, she said there was no medical proof to show that an extra 2 years would either benefit or hinder me - so said I could.  So, I was not surprised when she was not at all concerned that I had finished a bit earlier. 🙂 
(But I'd like to point out that you REALLY SHOULD discuss any change in taking your meds with your Onc before doing so!)  

I also left her with some information on the Otis Foundation, to pass on to the local Breast Care Nurse - Otis is a wonderful philanthropic organisation that organises the use of various Holiday Houses (donated by members of the public, many of whom have had family members with BC.) There are 'retreats' (as they are called) all around the country and they are made available from a few days to a week, to Breast Cancer patients for no fee.  You just have to 'get there' and bring your food with you.  All bedding etc is supplied.   Some places are pet friendly - most aren't! You can also take family members and friends with you for the well deserved break. 
Your Onc/Breast Care Nurse/GP just needs to sign a form saying you are 'up to it'!  Jump onto this site & check them out. 
There is usually a waiting period for some of the more popular ones (most are not available in school holidays) so the earlier you contact them to see if you can book one in ... the better!   Give it a go!
https://www.otisfoundation.org.au/donated-properties

I also gave her a bunch of cards/brochures regarding a wonderful Victorian initiative (called Mending Casts) that runs 3 day Fly Fishing Retreats (once again at no cost) for women with Breast Cancer called Casting for Recovery.(They have recently extended it to women with ANY cancer!) 
They also have retreats for Men with Cancer too (called Reel Recovery.) 
Pretty well everyone running the program have been personally touched by cancer at one stage or another (by way of family members or friends) and they just love 'giving back' ... putting a smile on the dial - whether fish are caught, or not!

You don't have to come from a fishing background to attend ... they supply all the equipment & show you how to use it (and fly casting is a gentle form of arm exercise too!).... and often there is a Look Good, Feel Better session as well (where you are shown how to use make-up effectively, and scarves to create a 'special look' whilst going thru/recovering from chemo) and a couple of chat groups, to discuss your journey so far - with those who've been thru it themselves, so they 'get it'!!  They have a BC psychologist attending and also a couple of Paramedics who are qualified counsellors. 
I attended a retreat a couple of years back & it was just terrific.  A few friends (and one husband) have also attended in the last 2 years and found it very therapeutic.  I am still in touch with a few of the girls on my retreat!   
You don't have to live in Vic to attend ..... l drove down from NSW, visiting friends along the way, both down & back, so turned it into a 2 week road trip, fishing all along the way! 
Canberra has their own group ... but I think that Vic is the only other state doing the program just now.   
I would encourage everyone to 'give it a go' when you are well enough to attend!! 
All the info on the retreats can be found here.   
https://www.mendingcasts.org/casting-for-recovery-retreats-vic

Even tho I've finished all my treatment, I'll still hang around on here .... 😉

Take care, & definitely consider checking out the above to 'retreats'!! 
Cos you DESERVE IT!

19 Replies

  • Well done arpie​ so nice to read this (albeit 2 months late).  I barely get into the main forum but I am so happy for you.  You are a constant support on here.

    Huge hugs

    Paula xxx

  • Congratulations arpie. How wonderful for you and i couldn't be happier for you. Your friendship has meant the world to me and got me through my early breast cancer treatment. While now with mets i will never get sign off, you are still there for me. Thanks arpie. I hope you celebrate this wonderful achievement.

    • arpie's avatar
      arpie
      Member

      Many thanks Cath62​  xx. I think I celebrated early, with my big WA fishing trip!  😋  The best part is that I am sleeping so much better since going off the meds!!   
      You've been there for me, too, in my darkest times, so thank you so much for that  xx  I am in awe of how you and cranky_granny​ manage your treatments & get up & get on with it xx. Keep doing the things you love,  with those you love & best wishes for your ongoing treatment xx 

  • Wonderful newsarpie​ 

    i know I echo a great many on here to thank you for all your posts over the years with your wisdom , knowledge, perspective and humour.

    It has been a pleasure to get to know you and see you play the ukekele!

    Your zest for life even in the face of personal setbacks is an inspiration to us all .

    and great to hear you will still be popping in to the forum to keep up the good  work.

    Julie 

    • arpie's avatar
      arpie
      Member

      Many thanks Julez1958​  .... we've all had wild rides now & then, haven't we, & I know I SO appreciate all the backup and support that you've also given me over the years (much of which I just parrot back to newer members xx) ...
      Meeting up with you & your hubby at uke was just one of the great bonuses xx. Hope to catch up again too, soon, when I venture to the Big Smoke again (which isn't that often!  LOL) xx
      Keep up your terrific travels & pics of the ocean pool & beach xx.  And I hope the weather this weekend isn't too wild & nasty xx 
      Take care, stay warm & snug xx Big hugs

  • Wonderful news arpie​ 😀 it's good to hear you are finally completely out the other side. Thank you for all your tips and information. This group has really helped me through my own journey. 

    • arpie's avatar
      arpie
      Member

      Thank you Katie46​   ....  It is all such a blur at the start .... also disbelief, anger, sadness, so it is great that we are able to help each other thru the ups & downs xx
      I had the same wonderful support & sage advice from other members, so can only thank everyone for helping me thru my own journey xx   

      It is wonderful being 'on the other side' tho .... 😉

  • Hiarpie​ a wonderful milestone, that is excellent news!! Hopefully being “untethered” from the regime of oncology visits and AI side effects will mean you can pursue more of your fishing, ukulele and kayaking adventures ☺️🌸

    A big thanks from me for how helpful you’ve been sharing practical links and easy ways to access information. Getting a diagnosis is a bit like being in a blizzard of information and I have always appreciated how your posts provide useful guiding lights for us to keep inching forward. 
    Your info about resources that are good for our quality of life (the Otis Foundation, Mending Casts and more) is fantastic!

    I hope to still see you around the forums and also hope you can make time for you!! You’ve done the hard yards!! Xox 

    • arpie's avatar
      arpie
      Member

      Many thanks Tri​  ... hehe, my fishing, uke, & kayak have helped keep me sane over the last 8 years thru all sorts of ups & downs ...

      I was actually in my kayak when I got the initial call to see my GP urgently, following the biopsy .... so I already knew the news was bad ... so I kept fishing!

      I hope you look into both the groups above & give them a go, as you'll meet wonderful, caring people who understand what we've all been thru. 
      I'll actually be in Vic in Sept, at an Otis retreat & hope to catch up with a few of BCNA buddies whilst there for a week!  😀

      Yep - I've already got another big kayak fishing adventure in WA lined up for next June - and can't wait!!  .... 😉   Coming off the AIs has made SUCH a difference .... there is a pep in my step again .... less aches & pains (in that I have arthritis anyway) & on no pain killers at all!  So YAY! 

      Keep putting up your informative posts too ... I've been reading more about the Vit B6 side effects again just recently .... It is an additive in SO many food products ... and people just aren't aware they may be overdosing by taking B6 Vit Tabs as well!!  grrr

  • It's a great feeling when you are let go from the regime of constant appointments and concern if the latest scan is good or otherwise!

    Well done, enjoy the freedom and yes hang around here as your advice is invaluable to all that have been and still coming to this forum

    Best wishes

    • arpie's avatar
      arpie
      Member

      Many thanks too iserbrown​ for your support & sage advice throughout my own journey - we've had a couple of similar paths to follow, so we've been able to trade info .... 
      And your own info and advice on the forum is particularly informative and invaluable too xx

  • that is wonderful news,  Though I'll never get that pleasure, I am always thrilled to hear good news stories and can never thank you enough for your friendship, advice, lived experience and of course wise words, funnies and meals and much much more

    • arpie's avatar
      arpie
      Member

      Looking forward to catching up when we can cranky_granny​  xx 
      I hope you are going well & should be retired by now xx. 😉

      take care xx

  • Wonderful news arpie. I have loved meeting you and it is nice to know BC did something good (in bringing you into my life).

    • arpie's avatar
      arpie
      Member

      And I am SO looking forward to meeting up with you again in Sept Blossom1961​  xxx.

      Feel free to add anything you like, about the Fly Retreats too xx.
      Lucky you!!  Attending two!  😀   Enjoy the trivia/fundraising night xx

      Yes, funny how good things can come out of adversity xx  I have 'met' (both online and in person) some wonderful members from BCNA over the last 8 years - friendships forged in both mutual support and appreciation xx

      Take care, buddy xx

  • Mez_BCNA's avatar
    Mez_BCNA
    Community Manager

    We are absolutely thrilled to hear this wonderful news arpie​ 🎉

    Thank you for being such a valued member of our online community. Your presence, support, and contributions have made a meaningful difference to so many. We’re so glad you still choose to 'Stick around' to support so many others walking a similar path

    • arpie's avatar
      arpie
      Member

      Thank you so much Mez_BCNA​ for the kind words xx   
      It was connecting with the online community here at BCNA in early 2018 (thru a mentoring buddy in Qld, who sadly lost the fight) that helped me thru many tough times, both in the forum & in messages, behind the scene .... so it's a no-brainer to give some back xx

  • Woohooarpie​ - so glad to hear this, congratulations 🙌 

    Those activities sound awesome!

    Thank you in advance for staying on this forum to impart your wisdom - your contribution is amazingly generous.

    • arpie's avatar
      arpie
      Member

      Thank you so much Suki​.   I hope you are going well xxx   

      Please consider giving one or both activities a go!!  It is just so wonderful, the generous people out there, prepared to give up their free time or properties -  to give us a 'special time', after being thru a 'rough time' xx