My Story

CherieE
CherieE Member Posts: 4
edited September 2011 in General discussion

Hi, everyone just introducing myself. I have created this group for the benefit of women in the western Sydney area. I have advanced breast cancer and  have mets down my spine, ribs, hip even one in my right toe and one on the top of my head. My ribs are painful sometimes when I take a deep breath in or lie on something hard. But I cope with it and its really not that bad. My last scan showed that I was "stable"… . I wasn't going to do the whole "This is my story thing" on here ... . but now I've stated I don't think I can stop.  So sorry everyone but I think you are a great understanding group of people.

I had a sore hip / inner thigh for a while. Went to Physio for several weeks with no improvement. Had a hip xray which was clear and I was also checked for an inguinal hernia. At this time I could hardly walk, I had a bad limp and could just manage to lift my right leg off the ground. Honestly, sleeping and getting in and out of bed was terrible. It would take me several minutes to maneuver myself in and out and turning over was just as bad. So I resorted to using a crutch to relieve some of the pain and later moved onto a walking stick. To crouch down and then get up was impossible I had to go on all fours and get up that way. Physio continued with no improvement so the Doc sent me for a lower lumber CT scan.

So on the 5th Aug 2010my Doc gives me the news that the scans were consistent with metastatic disease in multiple parts of the lower vertebrae. A further mammogram, CT and bone scan confirmed breast cancer with 2 tumors and many mets mainly in the spine, hip and ribs.

"I am a believer in that things happen for a reason. Sometimes we will never know the reason. Even though I'm not happy about cancer - I do try and be grateful that it did not happen when I was younger, when the kids were small as I wouldn't even be able to pick them up."

So the next few days were taken up with tests, scans etc. They found several breast lumps HER2+ and widespread “hot spots” – mets on the vertebra, tip of each shoulder bone, problem one in the hip, one on top of the head and a few spots in other places. So lifting things and walking at this stage was a big problem. Now I suppose I am lucky in that I work from home (we have an Ebay business)  if this wasn’t the case then I defiantly would have had to give up work as it would have been impossible to get to work and walk around or lift things etc.

"Getting cancer must be unbelievably difficult for people alone or single parents, it would be so, so hard being in an empty house – I take my hat off to those people."

12th Aug 2010 was the first day of treatment: Monthly – Zoladex – Hormone treatment and bone strengthening IV infusions to strengthen the bone and reduce chances of a break. This went on for a few months and I had radiation to the hip area for 5 days. This worked wonders. Presently I am being treated with Arimidex, Herceptin and still Zoladex and Zometa. I had a 6 week course of Taxol so I would qualify for free Herceptin (in Australia it is $70,000 otherwise).

Presently I am doing OK – I can walk again and do 30 mins of aerobics every 3rd day – I believe this has helped my mobility immensely. I am not having chemo presently and my last lot of scans showed I was “stable”. I obviously have advanced breast cancer but my condition has improved drastically from when I was first diagnosed – so I am grateful for that.

Sometimes I feel sorry for myself but try and remember there are many people worse off like the souls who instantly lose their life in accidents, or who are murdered, left with severe disabilities, have strokes or heart attacks or those who are on dialysis and have only months to find a kidney. At least I have time and maybe many, many years. I think you have to have a positive attitude and try and be content with what life bestows on you.

My husband has left his full time job (he didn’t like it anyway) and we have expanded our Ebay business to make up for his lost income. So I handle the purchasing, listings, financial issues and he does the packing and heavy lifting. So far so good.

So that is my story, I would very much like to get a group started and make contact with ladies in a similar position.

Thanks Cherie

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Comments

  • KathyQ
    KathyQ Member Posts: 2
    edited March 2015

    thanks for your stories girls good to have info from people in same position.  I am about to start a tablet form of chemo, cancer in spine ans just waiting for scan report today but probably hip and rib as well.  also in lung, and liver.  metastic br cancer.

  • CherieE
    CherieE Member Posts: 4
    edited March 2015

    Hi, let me know how you went with the scan. Hoping it is better than you expect. Cherie

  • Catherine S
    Catherine S Member Posts: 3
    edited March 2015

    Hello everyone, I had chemo today and was feeling sorry for myself, hoping it's working but feeling it's not . This is my first entry in to the world of cyberspace so if I'm in the wrong place sorry. I was diagnosed with Adv BC in March 2010.

    I have read your comments and tonight I'm not so sad, as I can see what beautiful, brave and strong women I am in the company of and it helps to bring back the strong and brave I need for tomorrow and the day after.....

     

  • Amy
    Amy Member Posts: 233
    edited March 2015

    Hi Catherine

    We all have days where we feel sorry for ourselves - wouldn't be normal if we didn't!!  That's when it's good to get online and see that you are not alone and that there are indeed (unfortunately!) a few of us going through the same thing.

    I haven't had chemo so I can't offer any advice there - hope it all goes OK and it doesn't knock you around too much.

    Take care

    Amy x

  • Hopefull
    Hopefull Member Posts: 33
    edited March 2015

    Hi Cherie,

    My name is Christine, I have early stage breast cancer and just over two weeks ago had my surgery. I was just wondering if there is any chance I could join your face to face support group as you are in my area and close to home?

    I realize that you state secondary stage breast cancer as your focus, but I was just curious about the possibility of joining?

  • Lila
    Lila Member Posts: 8
    edited March 2015

    Hi Girls,

    i am relatively new to BCNA and would like to join a group for support and camaraderie on this daunting journey.  My first diagnoses was in 1999 LCIS at 38. So lumpectomy, radiation, chemo and tamoxifen.  2 years later breast reconstruction and get on with life.  2013 at 52 spinal mets, rib mets etc. lung nodules big shock. Ovaries removed and menopause hit like a freight train!!! Radiation on spine which helped a lot with pain and femara hormone meds keeping me stable. Side effects very stiff joints and felt like I was 105 some days but my onc suggest taking 5000 mgs of fish oil which has improved my joint stiffness immensley.  Bondranat for bone strengthening. Aerobic/walk exercising and other weight bearing exercise helping with fatigue and sense of well being. So far so good. 

    I have moved from Tas to NSW about 9 months ago and live in the Port Macquarie area so won'

    t be able to attend face to face catch ups sadly.  It would be great to chat online like this with ladies or men in similar circumstances.

    Cheers Lila 

  • CherieE
    CherieE Member Posts: 4
    edited March 2015

    Would be great to have a chat. My number is 02 98372440. Thanks Cherie

  • CherieE
    CherieE Member Posts: 4
    edited March 2015

    Would be great to have a chat. My number is 02 98372440. Thanks Cherie

  • Lila
    Lila Member Posts: 8
    edited March 2015

    Thanks Cherie. I'll give you call next week.  Lila

  • JanineB
    JanineB Member Posts: 19
    edited March 2015
    Hi all
    Where have you been for all of my diagnosis.....kidding
    I just stumbled upon this group today as I did a search & it came up. I have been envious of others & the support groups they go to & was thinking there has to be something in Sydney. At first i wasn't ready or really interested in support groups as I didn't want to drown in others self pity but I have learnt through a Facebook support group that as we all understand each other's journey the support you get is amazing.
    I am now 2 years into my journey of ABC, diagnosed from the outset and for the most part I am stable NED from the neck down.
    Would love to find out if the face to face meetings are still occurring or if there are any ladies that would just like to meet up for a coffee every now & then
  • Desi
    Desi Member Posts: 43
    edited March 2015
    Hi Janine

    I have mets in my bones, liver and on the lining of my lungs. I am on Facebook with a support group, but would love to meet up for a coffee or just to chat. Where about do you live? I am in Glenmore Park.

    Cheers
    Desiree
  • JanineB
    JanineB Member Posts: 19
    edited March 2015
    Hi Desiree
    At the moment I am NED from neck down but have had mets in my liver, lymph & brain.
    I live in Plumpton so not that far away from you. Could I ask which Facebook support group you are in as I am in one aussie one which is great but I had trouble finding that
  • Desi
    Desi Member Posts: 43
    edited March 2015
    Hi Janine

    It is support for women with advanced breast cancer.
    They will ask a few questions before they add you.
    It is really great to be on there as you can rant and rave
    Just about anything. Lots of positive feedback from the group.

    It will be nice to catchup, maybe one of these days.
    I have giving up working just to concentrate on my health.

    Cheers
    Desiree
  • JanineB
    JanineB Member Posts: 19
    edited March 2015
    Hi again
    I'm actually a member of the group as well.
    It would be great to catch up, currently I am not working I as also stopped work to focus on my health but after a year I am looking at going back but just waiting to hear if my MRI is all clear next week.
    If you would like to you can look me up on Facebook listed as Janine Butera & hopefully we can organise a coffee time
  • Desi
    Desi Member Posts: 43
    edited March 2015
    Hi Lila

    I went on to Facebook and typed in support for women with advanced breast cancer, once you in ask them to add you. Let me know how you go.

    Cheers
    Desiree

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