Diagnosed on 1 May 2017

jenajena Ashby NSWMember Posts: 34

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. 

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Comments

  • AfraserAfraser MelbourneMember Posts: 923
    While we might all prefer not to be using this site, the stories here are a wonderful reminder of what is important in life and the benefits of making every day count. I hope others can suggest ways of easing your bone pain, I can only wish you the very best, strength in your positive approach and very happy camping. 
  • jenajena Ashby NSWMember Posts: 34
    Thank you Aftraser  
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,594
    edited August 2
    Oh the new van sounds good. What sort did you order? Pics and price to give the rest of us thinking the same some ideas? 
    Sorry to hear about the bone aches and liver mets. My dad is 77 and has the bones bit but not so far anything in the liver. His is from prostate which he had about 18 years ago and got over that. He has a few different pain pills. For a while the morphine patch was working but not now so he has pill form replacement. His cancer is hormone positive so every month he has an injection of one thing and every 3 months an injection of something else. It does save a lot of pills those injections as he is currently on steroids and chemo in a pill form which is working. It's strange the full infusions over 12 doses barely touched the cancer but these chemo pills are really dropping his psa levels now. Those and his medicinal cannibis oil which helps with pain a bit as well are doing him good atm. 
    Yes the spine is a beggar of a place and dad is starting some radiation soon to try and frazzle out some of it so its not so painful there. He is a trouper in having scans and they don't seem to worry him at all. Me, I am a chicken and get apprehensive over an ultrasound even lol.
    Drop me a message if you come up near Burrum Heads, Qld and you can lazy away some days on my warm sunny veranda overlooking the beach. We have our own road off the highway for slipping down to the cancer care centre in Hervey Bay where you can get your meds topped up. <3

  • primekprimek Broken HillMember Posts: 3,199
    Great you are bringing those plans forward and doing things you thought you might do some day. Whilst I am only newly diagnosed and treatment complete,  this experience has been a wakeup call and my husband and I are now doing motorbike trips whilst still young enough and healthy enough to do it. We have a big onw planned for next year. None of us know what our future holds but we can make decisions on the here and now at least. I hope treatment goes well for you and pain improves. Kath x
  • iserbrowniserbrown Member Posts: 1,653
    @jena Great that you have found this site as we are all here to help each other through.  Differing stages of treatment and some get on and off the roller coaster.  Wishing you well with ongoing treatment.  I am sure others will come on with some intense advice. Travelling will certainly do wonders for the well being and soaking up the vitamin D! 
    Take care
  • ZoffielZoffiel Regional VictoriaMember Posts: 883

    @jena Ordering a campervan over the phone on the way to scans. Excellent work!

    I've made some big decisions in unusual ways over the years. Sometimes I look back and wonder "Wow, how did I get the guts to decide to do that?" Things that I had been meaning to do, or didn't want to do, or didn't think I could do, all of a sudden I'm doing them. Most of the time I've made the right choices in those circumstances--I tend to overthink and over research and get into a churn where I go in circles unless I take a deep breath, brace myself and JUMP.

    Bugger puddling about, get in there and follow your heart--sometimes nothing else makes any sense. Marg xxx

  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 197
    Hi Jena, my name is wendy and I have had metastatic breast cancer for 4 years, I have it in my liver,and all through my spine, and I also have a pre existing back injury from 2006 which affects my lower back spine and legs, so can understand you bone pain concerns, there is a site on bcna specifically for metastatic breast cancer, so please pop in and have a read, 
    its certainly a shock when this happens, my diagnosis from day one was metastatic, so in one way I feel lucky as I did not have the wondering and waiting - I have IT -,you dont mention what treatment you are on, but so very pleased to hear that you have a medical team who are really looking after you, we are all individual and each plan is customized specifically for the individual. You  have made a PLAN now all you have to do is GO, I, like you, do mindfulness meditation, TRY and eat healthily and as my Oncologist said to me the best advice he could give me was to EXERCISE, {I do try} my pain regime if a 20mg of Kapanol slow release morphine at night and 5mg Oxynorm for breakthrough pain, I wont take panadol or similar because of my liver lesions, but thats personal choice, I get fatigued and rest when I have to, I listen to my body, I have just come back from the dentist as Dental  Hygeine is a top priority if you are on Xgeva{Denosunab} I also have a McGrath Breast Care nurse who is fantastic, I live 2 and a half hours north of Adelaide, so am fortunate that we have her services here.Anyway I wont rattle on too much as I m sure that you have had a huge amount of information already give to you, 
    we are all here to help in whatever way we can, WE GET IT, so pack up and live your dream, 

    wendy55
  • jenajena Ashby NSWMember Posts: 34
    Hi @Brenda5. Thank you for you message about your dad. I may need to change chemo reatement and one of the options my oncologist is considering is oral chemo, so it's good to hear your dad is having such a good outcomes with it.  
    As for my van, we are getting a Trakkadu - a red and white VW transporter 4motion Trakka conversion. We decided to go for the top conversion and with extras including a diesel heater, solar, leather seats and whatnot it all comes to about $125k.  Here is a photo of me with the demo van. We get ours in late Nov/ early Dec 
     
    Thank you for the invite to visit. I may just take you up on that when we head north to visit friends at Bingel Bay - hopefully next year. We are fully self sufficient
  • jenajena Ashby NSWMember Posts: 34
    Hi @primek. Thank you for your message. I discovered the northern rivers area on a motor cycle tour when I was in my early 20s. I tried to get work up here then; none was to be had so moving here became my long term plan.
    Such a wonderful sense of freedom riding a bike! What do you ride? 
    Where do you plan to travel? 
    Ride safe and have a ball!  
  • jenajena Ashby NSWMember Posts: 34
    Hi @iserbrown.  Thank you for your message. This is indeed a wonderful forum to have discovered. I think learning from each other is going to help me feel suppported. I'm fortunate to have an amazing partner who has been with me every step of the way and takes up way to much on the Homefront.  However, getting support from others going through the same challenge will be very helpful. 
    Im enjoying 'meeting' lovely women already after just made a single post
  • jenajena Ashby NSWMember Posts: 34
    Hi @Zoffiel. Yep, it was pretty crazy ordering my first ever new vehicle over the phone!  as we had made arrangements a couple of times to visit Trakka - put off because I was unwell.  The fella knew me as we'd had a few long yarns about the conversation. It's a good story though and I kinda like what a crazy thing it was to do under the circumstances.  
    We should all be a bit crazy more often!
  • jenajena Ashby NSWMember Posts: 34
    Hi @wendy55. Thank you for you message.  
    I also have a pre existing back injury which complicates things - herniated L4 &5 disks and other congenital problems. 
    As for treatment, I'm currently on nab-Paclitaxel for 3 weeks then 1 off. I'm currently in my 4th cycle.  I was taking dexmethsone 4mg during the first 2 cycles and all went well, increased apatite (I rapidly lost a lot of weight) and energy - if I ignored the increasing bloating. I was glad to get off the Dex but all did not go so well.  I seem to be a bit allergic to the chemo - ended up in emergency twice in the 3rd cycle with temp of 39.  I was pumped full of antibiotics I didn't need - as you may know there is a protocol they follow   Best to be safe than dead from some infection. I now take dexmethsone and antihistamines on the day of and day after treatment. That is working to help me cope with the chemo.  Liver is looking good!

    Unfortunately I have an urgent MRI this morning as I have extreme pain in my left hip, pain in the right and pins and needles in my legs. I'm a little worried, I must confess. Urgent scans never make one feel at ease
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 197
    hi jena, thanks for the message, I expect the mri is to just to see whats going on, unfortunately with our diagnosis, the doctors really have to keep on top of everything, could be just your back problem flaring up, I have a similar diagnosis to you in terms of my back, damage to c3 through to c7 and bulging discs, I used to have facet joint rhyzolizis twice a year under day surgery, whereby they cauterized the nerves in my spine to give me relief, however since my diagnosis, that's a no no  so just have to use pain relief, but I have found that all the while I can keep my life as stress free as possible the pain has gotten better, easier said than done, let us know how the mri goes,
    wendy55

  • primekprimek Broken HillMember Posts: 3,199
    @jena . My husband is the rider, I just love sitting behind him.  It's  a kawasaki vulcan nomad. Big cruiser. Next trip planned for the great ocean road.

    This isn't quite the same colour...my hubbies is all gold. 

  • LITHGOW1950LITHGOW1950 Member Posts: 256
    Jena your purchase of the Van put a big smile on my face.  Well done. And Primek wow do you really travel around on this bike?
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