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  • Eily333
    Eily333 Member Posts: 16
    edited August 2019
    Hi there,

    I live in Surrey and had a female surgeon from Jim Pattison for my BMX...during healing I had a Hematoma and a Seroma. I went back to the surgeon numerous and had the fluid drained from the Seroma over the course of a year...and it wasn’t going away.I could have lived with the lump/fluid but hated it!!! So she was fine with booking a revision to be done under light sedation..didn’t want the whole anesthetic thing again!

    Well on the day of surgery she was running late and was going to cancel me!! However she asked the Plastic Surgeon who she was working with to come by and see it...he ended up taking it out and revising my scar a little under local anesthetic.. i was very lucky!! But he said he wondered shy she hadn't referred me to him earlier...so maybe its possible the original surgeon can refer you to a Plastic Surgeon with no cost....

    I hope you can get yours revised..its made such a difference to how I feel about it all.

    Eily

  • akmom
    akmom Member Posts: 98
    edited August 2019

    Thanks Elly, I will ask the general surgeon for a referral to a plastic surgeon, hopefully he will be okay with that. I'mglad you were able to get the revision and were happy with the outcome!

  • akmom
    akmom Member Posts: 98
    edited August 2019

    Surgeon is giving me a referral to a PS, no problem. As usual I was all worried for nothing ;

  • Eily333
    Eily333 Member Posts: 16
    edited August 2019

    Great to hear! Good luck!

    PS ... Ioften find I’ve worried for no reason!

  • moth
    moth Member Posts: 3,293
    edited August 2019

    akmom - glad to hear you have your referral! I was just about to start getting mad on your behalf :D

    anyone want to get together this fall? a quick informal thingy again at Cactus Club etc would be great IMO

    hugs everyone

    m

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited August 2019

    Moth, last fall remember I said I could host one at a friend's house. Wish I could and just maybe in late fall I can Put it together. I have forgotten to post here for ages and do know that Ann (Pots) knows but not sure if you or anyone else does but I have been in the Victoria hospice for about 2.5 weeks, again for pain management. This time though the pain ramped up so much and so fast I was taking unbelievable amounts of hydromorphone as well as higher doses of methodone. These were prescribed by my team andand they were trying to get me here but it took a while. When I was here last year the doctor explained that drugs were the first option, then simple nerve blocks. Once they stopped working more invasive procedures were a possibility. So once here it was decided that I would have a surgically intrathecal insertion of a catheter up my spine with an external pump so medications could be infused right at the point where the nerves are. The biggest concern was withdrawal but that did not happen thankfully. It has been a success for the most part though do I still do have pain in my hand. September 9 I will have another surgery also with the catheter inserted but I will have the pump embedded in my abdomen with meds added through the skin to the pump when needed. So far so good although it is getting a bit boring.

    I have been allowed on passes recently. I had been on bed rest last week until Friday afternoon but was allowed out for the evening as I had planned a pizza party with my family as all our kids were home. I was amazed when I got home to find to find that my husband had planned a belated 70th birthday party for me with over 30 people including babies and kids, many from Vancouver. It was a total surprise and my husband had planned it for several weeks prior, not knowing I would be here.

    I note that there are some new peopleI here on this thread and I'm glad to see it. I hope there is a get-together and if not I will still try to plan, perhaps in November.

    Love Marian


    image

    My daughter and partner in front, top right our youngest son and left our older son and his partner.

    Nice party clothes eh? The green rope holds my IV set-up.

  • moth
    moth Member Posts: 3,293
    edited August 2019

    Marian, lovely to hear from you! I'm glad you're getting the pain treated. Pain specialists are like saints, aren't they?

    Happy belated birthday girl! And what a wonderful family to pull together a surprise like that! There's a lot of love in that photo!

    Let's see what kind of response we get about plans & pull something together. Perhaps late Sep might work for you after the surgery?

    We could go crazy and have 2 get togethers lol... the more the merrier :P

  • runor
    runor Member Posts: 1,615
    edited August 2019

    Marian E, you have a beautiful family. What good looking kids! I hope you continue to improve and the pain is under control. It sounds like you are in good hands.

  • adagio
    adagio Member Posts: 713
    edited August 2019

    Marian - I do not come on this site very often any more, but today I did - and I am sorry to hear about your pain - and having to be in hospice - but thankfully you have been able to get some help from the surgery. You are a brave woman. How wonderful that your husband organized a surprize party for your 70th - happy belated birthday. And like someone else said - you have a beautiful family.

    Not sure if you remember me or not - but I was at our very first get together at your place on West 49th, and we went through chemo roughly about the same time - and we also attended the same mindfulness full day retreat. Maureen - I live in Dunbar.

    Wishing only the best for you .

  • akmom
    akmom Member Posts: 98
    edited August 2019

    Marian, happy belated birthday. I sure hope the new “pain pump” does its job. Thanks for posting the photo of your beautiful family xx

    Hugs fromDale (I also came to a together at your home in Vancouver)

    PS - hi Maureen, hope you are doing well!

  • adagio
    adagio Member Posts: 713
    edited September 2019

    Hi Dale,

    Wow - it has been a while since we met at Marian's and I was so saddened to read that you have had recurrence of your cancer. Recurrence would be a tough thing for any of us to deal with - I sure hope that you get your mastectomy scars sorted out. How unfortunate that you are not happy with the results of the surgery - but hopefully the plastic surgeon will be able to help.

    Thankfully, I am well and I am filled with gratitude and never take a day for granted -- just trying my best to LIVE life while I am alive. So lovely to reconnect with you and wishing you well with your referral. Maureen

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2019

    Of course I remember you Adagio (Maureen) and AKM MOM (Dale) and I really want to have another reunion. Also Ossa (Ase) Runor, NVDobie and Moth. Hi Elly. I was just home with my older son and partner and she made me lots of treats to bring back to hospice. Today has been a better day and maybe we are getting the meds better sorted out. My second surgery is a week from tomorrow.

    Now that I am back here I will get it together to be on more often as I do miss you all. Maureen I remember well one of our first conversations just after your first chemo in 2012 when you were so violently ill all night long. I am on Gemcitabine now and had vague nausea Friday and Saturday after Thursday chemo.

    See you soon and hope your long weekends have been good.

    Marian

  • Pots
    Pots Member Posts: 189
    edited September 2019

    Hi ladies,

    Marian, in your pocket tomorrow for your second surgery. Fingers crossed all goes well.

    I start the Bylieve clinical trial tomorrow. I acquired the P13KA mutation sometime after finishing Taxol last year so I’m excited to be getting alpelisib with Faslodex.

    Let me know when/where we’re getting together in Vancouver. I’ll be there.

    Be well,

    An

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2019

    So Ann, both of us have big days tomorrow. It has been nearly 3 years since this surgery has been done here~~the permanent embedded pump so even the staff are excited. After nearly 4 weeks here, I can’t wait! A little fearful as it will be a spinal again and possibly 3 hours long. Keep us posted on the trial and we will talk soon. XXOO Maria

  • adagio
    adagio Member Posts: 713
    edited September 2019

    Marian - wishing you well for your surgery tomorrow - and I hope all goes smoothly!

  • Eily333
    Eily333 Member Posts: 16
    edited September 2019

    I hope all goes well tomorrow for both of you!!

    I have a follow up appointment to a CT scan at BCCA coming up on Tuesday... that in itself makes me verynervous!

    Take care all

    Eily (Eileen)

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2019

    Elly, those followups can be nerve wracking but unless I feel something changing, I can now stay calmer than before.

    Will post by Tuesday if all goes well. Bed rest for at least the first 24 hours and last timeI flooded the bedpan every time~~all the IV fluids. But my nurses made it as humorous as possible. LOL!


  • akmom
    akmom Member Posts: 98
    edited September 2019

    Hugs, Marian xo

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2019

    All over and seems a success. Loads of pain both in the back and left abdomen where the pump was implanted but left arm and hand feel better. I have a tight band thing (can’t think of the word) wrapped around my abdomen which be there for a couple of weeks for protection. I still have both the external and embedded pump as a precaution for a day or two

  • runor
    runor Member Posts: 1,615
    edited September 2019

    M.E., glad to hear the surgery is behind you and hope that with every day you feel a bit better. Pain is a terrible thing and I hope this gets you right as rain.

  • moth
    moth Member Posts: 3,293
    edited September 2019

    Marian, thx for checking in and glad to hear the procedure looks like a success!

  • dearlife
    dearlife Member Posts: 634
    edited September 2019

    Marian, I hope you are feeling better every day!

    ❤️

    Pearl

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2019

    4 days post op and better every day. If you can imagine a hockey puck sized pump embedded in your lower abdomen along with a lot of swelling, you will be able to understand why I still have a fair whack of pain. Same for my spine but with dressing changes today and the first catheter removed also, everything looks good. More on the way the pump is operated later but it is all impressive and the neuropathic pain is already decreasing. Thanks for all your words of support. I also have many words of support for all those in my team who have made this happen. Jumping from pain to cancer, my MO came to see me yesterday and we will start chemo again next week and get a PET scan done ASAP.

    MARIAN

  • dutchiris
    dutchiris Member Posts: 783
    edited September 2019

    Great news, Marian!

  • elderberry
    elderberry Member Posts: 1,068
    edited September 2019

    Marian, what an ordeal. I cannot even imagine a hockey sized pump in my belly. I wish you a speedy comeback and further improvements..

    Pots, my PC misbehaved and I could not get on the internet so I missed your start date with the Bylieve.

  • moth
    moth Member Posts: 3,293
    edited September 2019

    Marian, hope the swelling is settling and everything is starting to work like it should! xo

  • koshka1
    koshka1 Member Posts: 93
    edited September 2019

    we should plan another get together???


    Kish

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited September 2019

    Healing progressing. There is still a lot of post op swelling around the “hockey puck” but the pain is decreasing every day. The Medtronic rep is coming from Vancouver this week so I will get lessons on how to operate the embedded pump via a remote control held over my abdomen. That connects to an IPad which allows the user to control dosages. The main meds will be programmed in but I will learn how to allow for boluses or breakthroughs, again set by the nurse or doctor for as many and as much as allowed.

    The plan for discharge is to go to chemo from here on Thursday then head home.

    How are you all doing

  • janky
    janky Member Posts: 478
    edited September 2019

    Marian - so glad to hear that healing is progressing well and the next plan is being put in place! I wish you all the best and quick healing time! Janice

  • runor
    runor Member Posts: 1,615
    edited September 2019

    This is good news indeed, Marian!

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