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Comments

  • moth
    moth Member Posts: 3,293
    edited August 2018

    Hi marianelizabeth - Well, that really sucks. I'm sorry to hear you're experiencing a progression and having breakthrough pain. I hope your team will find some solutions to improve your comfort & that the xeloda will start working quickly. Glad that at least the ocean breezes are helping with the heat. Enjoy your time with your guests; I hope they lift your spirits and bring you joy.


  • hugz4u
    hugz4u Member Posts: 1,818
    edited August 2018

    Hugs Mariane. Dang cancer!!!! Phooey. Hope you get good pain drugs that kick in faster than the speed of lightning.

  • stellamaris
    stellamaris Member Posts: 313
    edited August 2018

    MarianElizabeth, sending you many positive, healing thoughts. So sorry to hear about your progression. I have been away from the board for a while. Finally retired and still figuring it all out. Just a couple of thoughts based on the posts i have just caught up on - my MO is Dr.Chia. Definitely not warm and fuzzy, lol, but i have a hubby for that. reconstruction - had a DIEP - that's the one where you get the tummy tuck - totally happy with the results. 4 week recovery (i am talking 4 weeks back to work and slowly hiking up grouse at age 65). Plastic surgeon was Este Boville. Hands down fantastic surgeon and exceptional human being. Wishing you all the very best.

  • NVDobie
    NVDobie Member Posts: 122
    edited August 2018

    hi, marianelizabeth

    Hugs and hugs, tough news. I am sure a lot on your mind. Sending you healing thoughts and vibes. We are here for you.


  • runor
    runor Member Posts: 1,615
    edited August 2018

    Marianelizabeth, I would say you are a warrior, but I hate it when people say that to me. I hate it when they tell me I am strong. Strong? No. If I had a choice, if I thought putting my head in the sand was an option, believe me, I would do it! I would bow out of this life event if I knew how. I did not leap in with both feet, entering the fray with my sword high above my head. No, I was dragged in as I clawed for a grip. I was forced. I was an unwilling participant and the constant threat was that I would give in to despair. Because it would have been perfectly sane to do so. MarianElizabeth, I hope that you find away to kick despair into the corner as you enter this fray. Do with your sword what you will. Pound it into a plowshare or smite the foe. Either way, this battle is not where anyone wants to be. I hope you find your way. Sending you supporting hugs.

  • janky
    janky Member Posts: 478
    edited August 2018

    Mariane - I am so sorry to hear of this! When we spoke (which I enjoyed so much) I could tell you ere an upbeat, positive person like me (most days). It is so very difficult to have to deal with these issues from every waking moment they swirl around inside us - pain, frustration, hope, death, family, what to do - what to do...I hope and pray this new treatment kicks in quickly and well and that all good things come your way - huge hugs Janice

    Moth - I am hoping your results are positive!

    Stay well and hopeful everyone...

  • Pots
    Pots Member Posts: 189
    edited August 2018

    Hi Marianelizabeth,

    When I heard that I had a second progression...truthfully, I got scared. The leap from NED to “you have and progression" aka now you're metastatic and your life will NEVER be the same was huge and took me six months to process and reconcile. Well the second progression earlier this year left me terrified about my future and the lack of certainty. What I learned sinceis to take each treatment/chemo as it comes, no one knows how the cancer will react to it or how long it will work. Yes I read and research, mainly to be informed and maybe have a sense of control, but no one can give me the answers to what I really want to hear...how long will this work. So be gentle on yourself, put a name to the fear and to the anxiety and then find your positive optimistic self, that’s who you are. Cancer can grind us down, exhaust us but not take our spirit!

    I’m moving to Vancouver at the end of August from Ottawa. Maybe our paths will cross!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2018

    Hi Marian,

    I continue to think of you and hope Madame X is doing her stuff. It's a strong chemo and packs a punch.

    Like Pots, the news of progression hit me harder than I thought and, in reality, I am only now getting back to normal after almost 9 months. I really expected to do well based on my history and my MO's assurances and yet, I was faced with significant progression less than 9 months after my stage 4 diagnosis. That knocked the wind out of my sails for sure.

    Since then, I have spent months being overly jumpy, imagining the worst with every twinge despite the fact that scans say stable. This too has passed. More recently my head is in a better space. I now realize that progression does not mean my imminent demise and not all pain/symptoms are tied to progression. It feels good to be back on an even keel again.

    All this to say, I understand a bit what you are feeling. You are in my thoughts and I sincerely hope that the next treatment beats it back.

    Hugs. Pat.

  • van2018
    van2018 Member Posts: 15
    edited August 2018

    Hello everyone, first time posting to the forum. I've recently completed round 6 of 8 cycles of chemo. I am scheduled for a MX (skin sparing and possibly nipple sparing) with immediate reconstruction in late Oct (due to multifocal tumors in right breast). I am contemplating BMX because symmetry is important to me long term. I will make a final decision on this after speaking with the RO in late Sept and the recon surgeon in early Oct.

    Does anyone have any experience with Dr. Van Laeken for reconstruction? Or experience with BMX with immediate reconstruction where DIEP (or TRAM) is not an option (@MSJ)?

    The other thing I read when catching up on the history in this forum is that a GP can't turn you away if you are a cancer patient? I don't have a GP. Have just been going to various walk-in clinics over the years. Same when I felt the lump in my breast. Haven't seen the walk-in doctor after he called with the positive diagnosis. Are there things I'm missing out on not having a GP during this time? I actually wouldn't mind finally having a regular GP again.

    Thank you to everyone that takes time to share their wisdom and support on this forum. xxx

  • moth
    moth Member Posts: 3,293
    edited August 2018

    Hi van2018 - I can't offer info about your surgery questions but another option is a Nurse Practitioner. The Cancer Agency has NPs - no referral required and it's specifically for people who don't have a GP. They are advanced practice nurses, can run tests and prescribe most meds & would continue to look after you for survivorship care.


    http://www.bccancer.bc.ca/our-services/services/pr...


  • van2018
    van2018 Member Posts: 15
    edited August 2018

    Thank you Moth! That's helpful. I was wondering what you were all talking about when you were talking about nurse practitioners. :)

  • akmom
    akmom Member Posts: 98
    edited August 2018

    Had my BMX on Aug 14 at Jim Pattison Outpatient Clinic in Surrey. Surgeon now on vacation for three weeks, so he told me to contact either my family doc or Breast Health at Jim Pattison to remove the drains. I am thinking Breast Health - pretty sure they would be more familiar with the procedure than my family doc... any thoughts?

    Did anyone else get sent home on this boob tube type garment with the Velcro closure in front? I don't know how long I am supposed to stay in this thing, wanting to get out of it but am worried the drains will get moved around without it. Can I just tape the tubes to my side and lose the boob tube? Feeling very sticky and uncomfortable but know I am not supposed to shower until the drains come out... blah.

    Otherwise feeling okay, off the pain meds and moving pretty well. Hope everyone can breathe easy in this smoky atmosphere. xo

  • akmom
    akmom Member Posts: 98
    edited August 2018

    Oh,thanks so much wrenn- was dreading the drain removal but doesn’t sound too bad at all!

  • akmom
    akmom Member Posts: 98
    edited August 2018

    Drains out this morning. Feelingso much more human now 😉 Lovely nurse at the Breast Health Clinic at Jim Pattison fixed me up in no time. Whew, such a relief.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited August 2018

    akmom, so glad you are one more step along in this journey.

  • akmom
    akmom Member Posts: 98
    edited August 2018

    {{{ Hugs and thank you, Marian }}}

  • NVDobie
    NVDobie Member Posts: 122
    edited August 2018

    Hope everyone is doing well on this rainy Wednesday.

    Has anyone use the products from " ATTITUDE"? Canadian company based in Montreal i think. It has consistently come up on top when i search for safe products to use on EWG SKIN DEEP website.

    Took me a while to realize it is a Canadian company, just made a whole bunch of purchase on their website, after ventured around on different sites. Got 25% off once I hit $100. Happy. Loading up from dish detergent to shampoo, lotion, cream, laundry and the whole nine yards.

    Now on to the journey to find good cookware and one piece of lip stick or color for some occasions.

    Would love to hear your suggestions. So far I am looking at Greenpan for cookware, isoi Bulgarian Rose Lip treatment balm for the lip.

    Search and research continue...

  • Pots
    Pots Member Posts: 189
    edited September 2018

    Furniture was loaded on Wednesday, no date yet on when it arrives in Vancouver. I'm back in Vancouver. And it feels like I have come back home. I'm impressed with the BCCA....within a week of receiving the referral from my MO I had an appointment with the new MO Dr. Simmons. My next chemo was also pre-booked. This certainly has reduced my anxiety about how things will unfold.


  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited September 2018

    Welcome home! I’m in Victoria but have always felt I had excellent treatment at BCCA. Hope it continues to go well for you.

  • koshka1
    koshka1 Member Posts: 93
    edited September 2018

    it’s been a while since we have had a local get together. Is anyone interested?

    It’s me Kosh aka Leanna


  • NVDobie
    NVDobie Member Posts: 122
    edited September 2018

    Count me in, Lenanna


  • dearlife
    dearlife Member Posts: 634
    edited September 2018

    I would love to meet everyone. Not sure where or when we could gather...I live in the gulf islands but could come to Vancouver or Victoria anytime in November or December.

    Pearl

  • koshka1
    koshka1 Member Posts: 93
    edited September 2018

    ok stay tuned.... maybe I’ll create another thread and see if we can get more,


    Any suggestions on where to meet? Maybe a Saturday or Sunday brunch

  • NVDobie
    NVDobie Member Posts: 122
    edited September 2018

    Aphrodite's Organic Cafe in Kitslano or Heirloom vegetarian Restaurant on Granville and 12th could be options to consider? Also Bluhouse Cafe in Deep Cove?

    You can probably tell I have been compiling organic restaurants in town. :-)

    I live in North Van but can go wherever you ladies want to meet.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2018

    with any calendar luck I could be there but not on a weekend. I am in Vancouver October 14-18

  • dearlife
    dearlife Member Posts: 634
    edited September 2018

    Vegetarian brunch sounds good to me! But I will be away until October 19.

  • NVDobie
    NVDobie Member Posts: 122
    edited September 2018

    ladies,

    Does anyone know about bonus entitlement while on long term disability leave? I started LTD mid year, wondering whether it would make any difference in when I return to work when it comes to bonus entitlement for 2018. I.e. would there be advantages to return to work before the year end.

    Thanks for any tips and suggestions

    P.S. how long did you ladies have between finishing radiation and return to work?

    Thanks

  • koshka1
    koshka1 Member Posts: 93
    edited September 2018

    what if we did something in November so we have enough time to plan?


    Marianne could you make November? I would love to see you?


    I will eat anywhere :

  • Walden1
    Walden1 Member Posts: 110
    edited September 2018

    Anyone in the Vancouver area have a good recommendation for mastectomy bras or stores that sell them? I need a size that seems to be hard to get 34F. My local specialist shop will order the sizes I need, but it seems there is only one style of bra they can order for me and the wait is extremely long. Anyone know a local shop that has good selection, or an online shop

  • bluesky1969
    bluesky1969 Member Posts: 80
    edited September 2018

    Hi all;

    I've been trying to reintegrate into life: spending time w my boys, trying to get through my piles admin and mail I avoided while recovering. I set a date of Oct 1st to begin work. I thought that would give me lots of time to restore my energy. Funny thing though - I've been exhausted and I don't understand why. Exhausted, irritated. I think some of it is the tamoxifen?

    I've been on tamoxifen since July. I've developed recent pain in my L hip, have bone scan sked'd in early Oct. Got myself a little whipped up about it last night - I'm sure it's SE from tamoxifen or something else...but was thrown into a bit of angst last night.

    I would love to meet up! Look forward to it.

    Very best to you all,

    P

    PS: the women at Nightingale were great - I didn't realize you need an appointment though...


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