Forum Discussion

jena's avatar
jena
Member
8 years ago

Diagnosed on 1 May 2017

I am 58 and have a lifetime habit of healthy living. Therefore,when I was first diagnosed with breast cancer in 2014, like everyone else I'm sure, I couldn't believe it. It never occurred to me I would get cancer.   After I competed treatment I did everything I could think of to ensure I would be healthy and cancer free.  

Early this year I started to experience inexplicable back pain. I also didn't feel myself - hard to explain.  After many visits to the doctor trying to figure out what was wrong, I ended up in Emergency at 4am with unbearable pain.  I was diagnosed later that morning with metastatic breast cancer - Monday 1 May.  Within a week I was receiving chemo and had my first radiotherapy treatment. I am blessed to have a highly skilled, caring and compassionate medical team that I have complete faith in. 

The resources on this site have been informative & helped me a lot, especially during the first few terrible weeks after I was diagnosed - I'm sure I took advantage of every scan and test available at North Coast Radiology during those weeks.  The scans show I have extensive metastasis in my spine, hips and a few areas on my scull; and spots in my liver. The liver is already showing a lot of improvement. Fortunately my brain and other organs are clear.   

The scans of my spine and hips are VERY scary and the associated pain is no fun.  Mindfulness meditation, eating healthily and exercise certainly help. I'd love any advice or suggestions you have in helping to live with bone pain. 

I read messages of hope and inspiration on this site during that first scary week. I can't find words to express how much those stories helped - I latched onto the hope and advice to live every day well and to set goals. Kitty's message that, "in a strange way, those of us with advanced disease are lucky – we know that the important thing is to enjoy today and to live as well as we can" is forefront in my mind.  So ... thanks to Kitty, one week to the day after I was diagnosed I ordered my dream campervan (over the phone on my way to Lismore for more scanning). Since I was a child I have always wanted to own a two tone Kombi campervan (my god parents, who I adored, had one) My partner and I are had saved and planned to buy a modern version in a couple of years but we brought our plans forward. We do have a basic 20 years old campervan we love but is doesn't have aircon.  Not so comfortable driving in summer since we moved north!

Thank you all for being here.  I look forward to 'meeting' at least some of you. 

exercise
inspiration
metastases
mindfulness
pain
  • jena's avatar
    jena
    Member
    8 years ago
    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
  • jena's avatar
    jena
    Member
    8 years ago
    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
  • wendy55's avatar
    wendy55
    Member
    8 years ago
    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
  • primek's avatar
    primek
    Member
    8 years ago
    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.
  • jena's avatar
    jena
    Member
    8 years ago
    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. 
  • primek's avatar
    primek
    Member
    8 years ago
    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. 
  • jena's avatar
    jena
    Member
    8 years ago

    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

  • wendy55's avatar
    wendy55
    Member
    8 years ago
    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






  • jena's avatar
    jena
    Member
    8 years ago
    @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. ☹️