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Coming to terms about living with metastatic bc

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Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 960
Post by Ultrarunchick moved by moderator from activity section to the main discussion page:

November 8 2022

Six years since my BC diagnosis and one year after being given the all clear (my 5 year anniversary) I was diagnosed with Metastatic Breast Cancer.. thankfully it's just in one place at this time my spine and it's taken a while (6 years) to get there. But I am now coming to terms and learning all that I can about what the future holds for me.

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  • Ultrarunchick
    Ultrarunchick Member Posts: 12
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    Thank you Mez,  I was previously very active, a runner, actually an Ultra Runner, I ran every day.  That was cut short when running became too painful due to the lesions that had grown on my spine (L5 and S1 joints) and now the pain is ongoing despite Radiation Treatment.  I am hopeful it will ease in time and I have been told I will return to running but it seems doubtful.  I am hoping to work with an Exercise Physiologist to get back to some sort of physical activity that will restore some of my physical fitness.  Has anyone  anything advice or care to share their experience.  I still walk daily, instead of running but it's uncomfortable I know it is good for me and my situation. 
  • iserbrown
    iserbrown Member Posts: 5,606
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    Not sure if you're Melbourne based.  This is an excellent program designed for cancer patients 
    https://www.exmedcancer.org.au/

    Best wishes 
    Take care
  • Ultrarunchick
    Ultrarunchick Member Posts: 12
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    I'm based in Brisbane.  I wonder if we can show this in our profile? 
  • Mez_BCNA
    Mez_BCNA Administrator, Staff, Member, Moderator Posts: 960
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    Hi @Ultrarunchick, users can certainly share their location based on how much information they want to share of course. Here is the link on how to update it http://onlinenetwork.bcna.org.au/discussion/comment/84330/#Comment_84330 

    Also, you may like to use the BCNA service finder to see if there are allied health professionals that may be able to assist in your area https://www.bcna.org.au/services-and-support-groups/


  • Julez1958
    Julez1958 Member Posts: 1,178
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    Hi @Ultrarunchick ( love the name!)
    Have you joined the private group for metastatic breast  cancer on here?
    I have never been a runner but do lots of walking and swimming - all forms of exercise are good physically and mentally for BC patients.
    Take care , there is a lot of great info on this website and lots of support in this forum.🌺

  • Ultrarunchick
    Ultrarunchick Member Posts: 12
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    Hi Julez yes I have joined the group you mention I was added just yesterday.  Just back from a walk but a little sore today (bone Mets) and tired insomnia from current medication but had a nice chat with a running friend who was out for her run this morning.  It’s a beautiful morning in sunny Brisbane!  
  • arpie
    arpie Member Posts: 7,806
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    Welcome to the group, @Ultrarunchick ..... sorry to hear of the mets diagnosis.  That's a real bummer :(  But they are getting so much better at controlling it now - I hope your pain issues are under control. xx.

    Insomnia is a real pain - I am taking Medicinal Cannabis Oil 1/2hr before bed, to help with mine & it is working well.  Qld has VERY ACTIVE online groups for getting prescriptions & purchase of the oil (as it has been legal to access it for some years now.)

    We've had a few discussion topics on the use of it here - so if you put 'Medicinal Cannabis Oil' in the search up the top, you'll find the topics.

    We have a few good runners in the group ..... if you put something like 'any runners out there' in the heading, it could be a really good support base for all of you, trading tips & suggestions for managing your passion.

    take care & all the best xx
  • Ultrarunchick
    Ultrarunchick Member Posts: 12
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    Thanks @arpie some great advice.  My daughter is actually a pharmacist and has prescribed cannabis oil and it is something I have considered. It’s really early for me so waiting to see how well my initial treatments are working.  I’m hoping once I am off Dexamethsone that I will no longer have insomnia.