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Diagnosed on 1 May 2017

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  • primekprimek Broken HillMember Posts: 5,408
    @LITHGOW1950 yup. The pic is me on way back from my breast surgeon appointment end of July ...1000k trip.



  • jenajena Ashby NSWMember Posts: 83
    @primek that is a VERY cool bike!  I rode along the Great Ocean road many years ago with a few friends. It is a beautiful ride.  You will have a fabulous time together, I am sure. 

    @wendy55, well my MRI went well!  It seems the pins and needles and whatnot must be associated with the spondylitisthesis as there was no concerning nerve compression or spinal canal involvement and no obvious fracture.  Phew!  I'll find out Monday what the next step will be - the pain in my left hip is very bad so I guess I may need another radiotherapy treatment and my oncologist may change my chemotherapy drug .... 

    i have a pretty good back exercise regimen and have been experimenting with different exercises to manage the spondylitisthesis - hard sometimes to know if the pain is that or the cancer. I'm seeing a physiotherapist this week to be assessed for access to the local hydrotherapy pool. I think that might be helpful.  Have you tried hydrotherapy for you back?   My favourite activities are cycling, kayaking and walking. Sadly my cycling is a bit limited at the moment because of my hip; so it's short rides for now. ☹️  
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 617
    That's wonderful news, I did have a sneaking suspicion that your back may have been causing the pain, I get that at times and yes its hard to work out what the pain is coming from, however my pain is always in the same places so I know that its my back and hips not the cancer, I was under a physio as well and went to the local hydrotherapy pool to strengthen my back and especially to try and strengthen my left leg and hip, and yes it was wonderful even just walking across the pool one side to the other, felt great, the physio did up a regime of exercises for me to complete every week and they really did help, however now I am back on oral chemo, I found it hard as  it was all inside and there would be a few people there I was concerned about catching something so decided that it may be for the best to stop for a while at least until my treatment changes, there is a brand new bike inside the shed, which I am hoping I will be able to use once the weather gets better,I have just had a bone density scan, so that will be very interesting to get the results, I a have bone strengthening injection every 4 weeks for the last 4 years and now my oncologist has changed that to 6 weekly so something is working, my tumours in my liver have reduced from 6 to 2!!!. So I just keep on keeping on,I also have a Vitaminb12 injection every month and that gives me a bit extra get up and go but more than that it keeps my mental health in good shape, I have to take a antidepressant as well, I call it my happy pill!!!it was not my choice, but my emotions were all over the place for the first two years on the xeloda and my gp eventually got me to agree that, yes,it would be a good idea to try them and after I saw the difference they made decided that it would be a good idea to stay on them.I live near the beach so there is always somewhere to walk.Will be thinking of you Monday and hoping you get a good result, I see my gp on Monday as well and will get the results of my bone density scan.
    Wendy55






  • jenajena Ashby NSWMember Posts: 83
    @primek - too cool for words 
  • jenajena Ashby NSWMember Posts: 83
    edited August 2017

    Hi @wendy55. Thank you for your message. Sorry for my long delay in replying. Before joining this forum I didn't know anyone with metastatic breast cancer.  While I wouldn't wish this in anyone else, it is so good to share with others going through this. 

    It's good to hear that you found hydrotherapy helpful.  Like you I'm keeping away from the public pool because of chemo. I'd planned going to a community health hydrotherapy pool, I thought it would be relatively safe for me because they monitor folk using the pool.  As it turned out they also hold swimming lessons for kids - so it was a no go. I'd hoped for an exercise program I could use at the beach once it warms up a bit - I live close to the beach too

  • primekprimek Broken HillMember Posts: 5,408
    Hydro pool walking was the only exercise I could manage during chemo and never any issues. The scariest place was the supermarket. I was very diligent about cleaning the trolley before use. I asked my oncologist about the pool and no issues. 
  • jenajena Ashby NSWMember Posts: 83
    Thank you @primek. The physiotherapist recommended I didn't join the hydrotherapy class because of public access to the pool - especially the kids. Oh well, it's nicer swimming/ walking in water at the beach anyway. Just have to see if the local surf shops sell swimming wetsuits. I'll get onto that next week.  
    Walking in water was all I could bo when I injured my back many years ago - the pool kept me sane!  I simply love how we can move about, virtually pain, free in water. 
  • primekprimek Broken HillMember Posts: 5,408
    We had a number of ladies doing the ywca encore whilst still on chemo and that was hydro pool. I guess it often is personal opinion and not based on facts.  I was explained by my onco team, most chemo health issues are related to our own body not outside infections.
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 617
    Hi Jena,
    thanks for the reply, yes like you I did not know anyone else with metastatic breast cancer, it was only through my McGrath Breast Care Nurse that I got to know one other lady in my area, I live in a small coastal community and felt quite isolated at first and it took 18 months before I felt confident enough to post on the bcna online forum,do you have a Mcgrath nurse in your area, you should if you are rural, just look on line at the McGrath site to see if there is one, they are a wealth of information and a good support person to talk to, 
    keep well,
    wendy55
  • jenajena Ashby NSWMember Posts: 83
    Thanks @primek.  That makes sense but I think I'll still steer clear of the hydrotherapy pool given conversation with Physio. Given that I'm otherwise pretty healthy, I could probably take the risk .....
    However, I'm lucky to have the rather pleasant option of swimming in the ocean. Just gotta get a wetsuit sorted.  I think I'll call the local surf shops now & if they don't stock swimming wet suits I might venture an online purchase- got some useful tips from the hydrotherapy physiotherapist  
    jena
  • jenajena Ashby NSWMember Posts: 83
    Hi @wendy55. I was put in touch with the McGrath nurse when I was first diagnosed with breast cancer in 2014. She did put me in contact with some useful resources and has contacted me since my recent diagnosis.  

    I met a local woman at a bc event in 2014 and we started meeting most weeks for coffee just to yarn and support each other.  We have remained friends. It would be good to meet someone locally again for mutual support, so I must follow up with the McGrath nurse.  Thank you for the reminder Wendy 
    jena
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