Could really use some inspiration from a positive experience



  • JulesjourneyJulesjourney Member Posts: 12
    Hi Arpie
    I have set up a group on Facebook called Julies Journey. When you go in there is a spot where you can set up a group page, and you only put who you want in it to see your posts, no one else can see it, I do this as it saves me ringing and emailing all my friends and tells them what I am getting done at the time. I find it really useful, as sometimes I get home and  think I have to ring so and so, I find this better and quicker. Julie P.S. 1 week of Radium done, it is ok, a bit frightening to start but you get used to it, and it doesn't hurt, I do have sore boobs a bit at present. 
  • arpiearpie Mid North Coast, NSWMember Posts: 906
    @Julesjourney  Well done, Jules - congrats on Week 1 done & dusted and staying so strong!!  

    I'll look into that 'FB post ' as a lot of my contacts are on FB .... trying to contact everyone by FB or email is a real pain, eh?  But still easier than individual letters, for sure!

    I am still waiting to hear from the Radiology Dept at  Port Macq.  Hopefully I can get an appointment before the end of Feb so I can start soon after & be done with it.  I have plans for April already that I don't want to miss!  :neutral:

    @Sister Thank you so much for that .... I will check your blog out!  Well done you two for sorting that out!  Anything that helps spread the word with the least amount of time/stress will definitely be a bonus (even tho i am not 'that' technically inclined!  LOL

    Take care ladies - all the best with your treatments & journey xx

  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 564
    Hi @arpie,

    I have looked into setting up a blog within the online forum space as I understand you would like to be able to keep your friends updated regarding your progress.

    You can create a “New Discussion“ under your profile, copy the URL of the new discussion and email this to your friends each time there is an update. 

    Alternatively, you can send your friends a link to your profile and your friends can check back in each week or each month depending on how often you are planning to post an update. The online network is however a public space, if you would like for this conversation to be private then you can set your account to private but your friends would have to set up an account to see your discussions and participate. 

    Hoping this information helps, most happy to discuss further.

    Regards Giovanna

  • arpiearpie Mid North Coast, NSWMember Posts: 906
    @Sister - that blog is brilliant!  Well done you!  

    Sadly a uke friend has just been diagnosed with colon cancer - i just hope they have as good a forum as us 'Breasties' do!  I've been able to give her a heap of info to hopefully make her journey a bit smoother re IPTASS & other tips gleaned from both my husband's cancer journey and now my own - including your idea for the blog - sending out one email to everyone with the website address & friends/family to check it out every week for updates - what a great idea.

    @Giovanna_BCNA - many thanks for that info Giovanna ... I may go with the regular blog at this point in time ... tho not immediately as I have lots of things on over the next week.
  • SisterSister Adelaide Hills, SAMember Posts: 2,486
    Thanks, @arpie - Friends have given me lots of positive feedback about it. (I've just put an update on there - disastrous day today)
  • arpiearpie Mid North Coast, NSWMember Posts: 906
    Shame @Sister  .....  Oh dear - What a shocking experience for you - thank GOD you had Dave there who obviously picked up on your discomfort and the unusual 'skin shape' of the liquid going into the wrong spot .... I hope your next effort is not so painful - and it all goes 'right'!  Good Luck!

    I hope you are feeling OK now - are you able to have a wine & bickies to 'settle down'?  I hope so.

    I chucked two wobblies myself today, too .... one medically induced - my referral was 'missing in action' from last Wed & still hadn't been received until lunchtime today (they reckon they sent it 4-5 times! I could see my 'start date' retreating with every day of delay ...)  & one vehicle insurance induced (their phones were dead & they weren't replying to emails or web messages from Fri til this afternoon as my campervan was not not covered by insurance at all & I will be using it for a week from tomorrow!) .... Both are now pretty well sorted & I now hope to have my initial radiation appointment next Monday at Port Macquarie (tho waiting for confirmation in the next day or so!)

    All the best - from your Breasties!  ;) 


  • SisterSister Adelaide Hills, SAMember Posts: 2,486
    Thanks, @arpie Glad to hear you've sorted out your appointment.
  • RomlaRomla AdelaideMember Posts: 1,463
    Hi @Eastmum I’d like to share a story that got me thinking and moving again when I was having a tough moment. Last year I attended a local breast cancer group meeting and I met a quietly spoken low key lady called Yvonne in her 70s. She had had breast cancer 20 years earlier. On a trip around Australia with her husband she discovered a lump in her breast in Mackay .She had it checked out and was cancer and needed a mastectomy . Her husband and daughter share a birthday and before leaving promised wherever they were they would fly back for her daughter’s 21st. The day of her mastectomy she drove her husband to the airport for the 21st then drove herself to hospital for surgery.She was only able to stay in hospital until the Friday as at that stage it was not open weekends. Surgery 20 years ago was probably more invasive than today and she had hers in a small country public hospital not a large city teaching hospital Come Friday afternoon she went back to the caravan park to her van where she stayed with some help from neighbors until her husband returned. She is a tiny little woman who gets up for a one hour walk every morning at 6 am regardless of the weather as she says there is nothing that interrupts her at that time and she lives in the Adelaide hills on steep land. She is still cancer free , has had many trips in Australia and overseas since . She is an inspiration to me for so many reasons not the least of which  is her unassuming practical nature steadfastly enjoying life.
  • EastmumEastmum SydneyMember Posts: 424
    edited February 5
    Hi @Romla thank you sharing such an amazing and inspiring story! What a wonderful woman to have met. 

    @sister I just read your blog post - so sorry to hear about your traumatic day. Thank goodness your husband was there for you. Please let us know how you go on Thursday. 

    Thanks for asking how I'm going. Still traipsing around to appointments and getting info. Had my first appt with the plastic surgeon today. Discussing immediate DIEP after double mastectomy but he won't do immediate if I need rads. Interestingly my breast surgeon told me he didn't think I would need rads but the plastic surgeon said he thought it at 70% chance it will be recommended to me. Now I'm wondering - if it is recommended, will I actually do it? Is there a choice?  Ah well next step is back to the Breast surgeon, CT scan of blood vessels to see if they'll suit a DIEP then will need to make some decisions! 

  • PaynePayne Forster NSWMember Posts: 131
    Hi @arpie.  I had my chemo and radiation at Port Macquarie 2017.  They made a terrifying experience almost enjoyable.OK, maybe not enjoyable, but positive and supportive experience. Sue P
  • arpiearpie Mid North Coast, NSWMember Posts: 906
    @Payne  Thanks for that, Sue

    I go to Port tomorrow for planning/mapping & again next week, then start my radiation treatment on Feb 28th.

    I've seen the people at the Lodge & will be staying there during the week, going home on weekends. 
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