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  • ottawaMom
    ottawaMom Member Posts: 2

    Just logged in for the first time in months.....sorry about that. Anything I can do to help with getting a mets support group up and running, please let me know. But all are welcome to my (ok, Breast Cancer Action's) support group. The schedule again is: 2nd Wed of the month at 7 pm and 4th Wednesday of the month at 10 am. The Ottawa Regional Cancer Foundation gives us the room at no charge, for which I am grateful. They are a great and caring resource for all of us.

    If you would like your name added to my email list for the support group, please send me a note at : support@bcaott.ca

    Happy Saturday everyone!

  • Mary-Evelyn
    Mary-Evelyn Member Posts: 7

    Hi Teekee, I agree with what Christalle says about the CCS's ride program - it's great. They do require 3 business days' notice to book a ride, so the trick is to remember to call in time. You can book several rides in advance if you know the dates & times of your appointments and treatments.

    Thanks, Christalle, I'm staying in touch with Andrea by email, and I also think BCA could use a mets group for those of us unlucky enough to have experienced spread. I've let Andrea know about one new BC mets support group forming in Ottawa, which is being organized by an Ottawa member of the Facebook group, Canadians with Metastatic Cancer. Teekee, you may already have joined the FB group but if not it's a good source of support and information.

    Mary-Evelyn

  • Cristalle
    Cristalle Member Posts: 52

    JoJo there is a black kitten at Pet Valu Gliucester Centre. A female 3 mo old named Iggy

  • JoJo_1964
    JoJo_1964 Member Posts: 49

    haha .. I just got a kitten (black male) and he's a handful. You're the sweetest Criistalle. :) Thanks for thinking of me.

    Hope everyone is doing well. Haven't yet read through all past recent posts but I do see some new members. Welcome.

    I had my ultrasound done & it showed a seroma right at the lumpectomy area (my lumpectomy was at 6:00 o'clock under the breast). I have to say my radiation oncologist is the best - she called me within 24hrs with results. I went to Haley's Rehab (thank you Cristalle for recommendationl) couple of days later and they think I also have some scar-tissue going on. I will try their treatment of MLD massages. On this topic, this treatment is not cheap and will be coming out of my pocket as I have already used up my limited private insurance coverage for physio. My hubby thinks we breast-cancer survivors with post-surgery/radiation/chemo side-effects, should write to OHIP and demand this be covered. What do you girls think?

    JoJo

  • bravepoint
    bravepoint Member Posts: 232

    I was reading through some of the posts about Haley's rehab. Sounds like everyone highly recommends them. It might be worth looking into before rads start for me in April. I'm hoping my husband's insurance will cover it!

    Gail

  • Cristalle
    Cristalle Member Posts: 52

    Gail, I went for the consultation at Haley plus three appointments. I have no coverage so have stopped for now. They were very helpful with scar tissue (Jo Jo the Monday fitness instructor says if there's pain it's not lymphedema.) I have fibrosis but have never had an ultrasound to confirm seroma (Kat suspectsone under my scar).

    Here you can watch the massage technique--you could try this on yourself.


    Here is a document on self massage if you don't have a supportive partner!

    https://www.cbcn.ca/documents/ywc_presentations/(4C) Managing Lymphedema Notes4 - Anna Kennedy.pdf

  • Cristalle
    Cristalle Member Posts: 52

    JoJo great about the kitten! At last night's meeting of BCA support group (great to see beebs by the way) we discussed why OHIP does not cover MLD and other scar tissue treatments, when after all they were caused by cancer surgery and treatment (usually radiation). It is not fair to pay the whole shot ourselves.

    I think we need to have lunch again soon to put our ideas together. The coil binder we got at WBHC is also being updated if anyone has constructive suggestions on that. I used it a lot at the beginning, but the aftercare stuff is sorely lacking, especially for those of us who don't qualify for Babes4Breasts or Welness Beyond Cancer

  • bravepoint
    bravepoint Member Posts: 232

    Thanks, Cristalle. I appreciate your comment about if there's pain then it's not lyphedema! I'm going to see what my husband's insurance will cover and go from there.

  • Cristalle
    Cristalle Member Posts: 52

    Hey my Acuhealth machine has arrived but a little nervous about doing it on myself....it is the same model the physio st Haley uses.

    Got a cancellation for After The Bell March 3-4 at Maplesoft. Anyone else going?

    Patti my cancer coach has enrolled me in a Wed afternoon group starting the 15th. I hope it will be like Stepping Stones which I missed out on. Fear of Recurrence group has still not starred st U of O, may not have time when it does

    Next hurdle is my first mammo since the surgery and treatment, not until May 1. Cheers all!

  • bravepoint
    bravepoint Member Posts: 232

    Cristalle - I met with Louise at Haley Rehab for the first time this week. It was good for helpful and informative. I could remember the name of the machine used on my scars but it must have been the Acuhealth. Not sure I would want or be able to do that to myself.... Are the activities you mentioned support groups or fitness classes? I live in North Gower so Maplesoft is a long drive!

  • Kyta
    Kyta Member Posts: 273

    Hello Ottawa ladies. I was one of the original posters on this thread back in the day. I had to dig deep tonight to find my user name and password to log in. I was pleasantly surprised to see that this thread is still going, although sad that you find yourselves here. I was recently diagnosed with rectal cancer and looking for discussion boards on that topic (there aren't many and they aren't very active) and it got me thinking about what a great resource BCO was to me when I was first diagnosed and for quite a while after. I also had the pleasure back then of getting together for lunch with a some Ottawa ladies a few times and we connected often via email or PMs. The support meant the world to me. Anyway, I just wanted to say that I wish you all the best and hope that you maximize your opportunity to ask questions, provide advice to the newbies that are scared stiff, support one another and keep the 'Ottawa ladies' thread going to share local info with each other. Take care.

  • Cristalle
    Cristalle Member Posts: 52

    If you are not a member of Breast Cancer Action, consider joining if just for the subsidized fitness classes!Today is the evening support group at Maplesoft, 1500 Alta Vista, at 7 pm, hosted by ottawaMom.

    Here is a special event for the next two weeks. Trying to find out if non-BCA members may attend Should classes not be full.

    --------------Special Fundraising Class For BCA Members--------------

    During the break between the winter and spring schedules, come out and join us at Squat the World Fitness for a special Fundraiser "Boot Camp" class. Don't let the name worry you! No boots, no camo, just fun and a bit of sweat. Try out a class format and equipment you may not have had a chance to try before in a circuit-style class that is suitable for all fitness levels.

    Location is at 1484 Scott St., second floor, one block east of Parkdale (near Tunney's Pasture)

    Free parking on side streets. March 17 and March 24, 10:00 am.

    A donation of ten dollars per person per class is requested, all profits go to Breast Cancer Action.

    Please note, the gym is a Martial Arts Gym with padded floors, so no shoes are permitted. Bare or sock feet only please!

    Please register by emailing Mary-Jo at mjlewis52@gmail.com

  • lafish
    lafish Member Posts: 32

    Just thinking about all of you Ottawa gals and hoping all is going well with every one of you, looks like March is going out like a lion, spring is around the corner :-)

  • Mary-Evelyn
    Mary-Evelyn Member Posts: 7

    I went for a walk today down to the Rideau River park near me - saw Canada geese, gulls, ducks, and ravens, all making lots of noise. Spring is definitely in the air :) I plan to get more exercise now that the walking is better. Good for the bones, and the mood ...

  • lafish
    lafish Member Posts: 32

    So glad you are out enjoying the good weather Mary-Evelyn :-) It is important to enjoy every day.


  • bravepoint
    bravepoint Member Posts: 232

    Finished up chemo a few weeks ago and just had my CT sim for radiation. Rads start 4/18. This gorgeous weather does so much to make me feel better! Getting outside, walking, playing with my dogs or just sitting in a shelter spot is so nice after a long winter of hibernating....

  • lafish
    lafish Member Posts: 32

    Hey there Bravepoint, congrats on finishing Chemo! I absolutely agree that sunshine and dogs certainly makes you feel better. Where are you having your radiation treatments? I had mine at Irving Greenburg. I drove myself in for all of my treatments and felt much better to have that independence compared to chemo.

  • bravepoint
    bravepoint Member Posts: 232

    Lafish - I live just south of in North Gower so I will be going to Irving Greenberg for radiation treatments, much closer than the General. My husband might drive to some appointments but mostly I'll be taking myself. I totally understand what you mean about independence.... I had to have a driver for chemo as I had Benadryl pre Taxol which made me sleepy!

  • lafish
    lafish Member Posts: 32

    What breed of dogs go you have? I have a pug and an Australian cattle dog, totally different personalities.

    Have you started using glaxilbase in prep for radiation? I'm just outside of Merrickville so we are neighbours :-)

  • bravepoint
    bravepoint Member Posts: 232

    I have 3 German Shorthaired Pointers (4, 9 and almost 15 years old). I compete and teach agility!

    I started the Glaxal base yesterday. Hopefully, it helps!

  • lafish
    lafish Member Posts: 32

    Wow three! What a gorgeous breed! I think the glaxilbase helped I still burnt pretty badly but I am fair skinned. I found radiation to be a little difficult to get through but totally doable. Who is your RO at Irving Greenburg?

  • bravepoint
    bravepoint Member Posts: 232

    Lupe. How many radiation treatments did you have?

  • lafish
    lafish Member Posts: 32

    I did 25 rad treatments with bolus, it got a little rough around the 4th week but I was prescribed flamazine and that kept things under control.

  • Cristalle
    Cristalle Member Posts: 52

    Hi this is Cristalle. You're all invited to the BCA support group, led by special guest Teegan from Haley Rehab. It's free Wednesday April 12from 7-8:30 pm at Maplesoft. Justtell Kiley at Haley you are coming.

    Topic is Sex after Cancer.....

  • Cristalle
    Cristalle Member Posts: 52

    Hope everyone is enjoying the return to seasonal weather. I am not at Maplesoft much now, finished counseling and got a clear mammogram back from the Montfort at the one-year mark. A state-of-the-art pain free procedure! Four more to go before I can say "cured!"

    Surgery anniversary is the 16th so looking forward to a real summer this year. Hope the lack of activity here means everyone is doing well......

    Cristalle

  • JoJo_1964
    JoJo_1964 Member Posts: 49

    Hi Cristalle! So nice to hear from you and so happy that things are going well. Hey you only have 4 more years of this Tamoxifen! lol Now that will be a day to celebrate.

    I hit a wall physically back in February that started mid-January. I couldn't walk 20 ft without getting exhausted. A set of stairs was a killer. Doc sent me for blood-work and most things were negative. I was told it was probably the Tamoxifen. I think it's a combination of Tamoxifen and a delayed post-radiation effect that I never really got immediately after radiation. Having that long Ottawa winter wasn't helping either. Finally in April I was feeling better. Today I'm back to averaging around 35km of walking per week with some biking in there when weather permits. Lets just say I decided to invest in a better umbrella yesterday so I could continue the walks pleasantly without fighting the umbrella and windy rain. I am foreseeing crappy summer weather.

    How is your cat doing? I lost my 17-yr old cat with old-age health issues back in early April. On that Sunday, she started breathing very heavily and seeing she hadn't eaten a thing day before, brought her to Alta Vista Hospital where all agreed it was her time to sleep. Daily meds she had been on were not enough. They did blood-work and an xray within 10 minutes of us showing up. Within 30 min of arrival to a packed waiting room, she was peacefully gone. Can't say enough of how professional and caring that hospital is.

    Hope all you other girls are doing good. Most of you had chemo included in your treatment so had it harder. :( I still always have to remind myself, some days are going to be tough but they always pass.

    JoJo

  • Cristalle
    Cristalle Member Posts: 52
    JoJo, funny you ask about Esther cat. She's gone off her wet food this week, although still eating dry, and I found some vomit this morning. I hope the kidneys are not failing....

    Surgery was last June 16 so my anniversary looms. I don't have a MO as I was not prescribed anti-hormonal therapy, just 16 rounds of rads.

    I am sorry you are going through the fatigue on Tamoxifen. Maybe we can go for a walk together sometime, I am not in your league. Finished Cancer Coaching and a recovery program, those ladies are meeting for lunch Monday. We finished on May 3, all kinds of cancer including BC. A couple of the After the Bell women have also gotten in touch, and Marlene from Fit and Fab. My big challenge is a 20 lb weight gain since radiation.
    I am seeing a dietitian Monday. Hence the desire to get walking and biking! Love C
  • bravepoint
    bravepoint Member Posts: 232

    Can anyone recommend an MO? PM please. I'm thinking of switching..... I've never liked the MO that I am seeing.

  • redninrah
    redninrah Member Posts: 366

    HI Ottawa ladies, is anyone of you taking robiciclib chemo tablet? My friend is taking it and wanted to get some feedback in regards to symptoms?

  • JoJo_1964
    JoJo_1964 Member Posts: 49

    Hi Redninrah. I can't help you - sorry.

    Hope all my other Ottawa Gals are doing good. This time last year we were all in the midst of treatment - the Summer of 2016 Gang. :)

    JoJo

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