Anyone from Alberta? Edmonton? Fort McMurray?

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  • clarrn
    clarrn Member Posts: 557
    edited October 2014

    Carren-  of my goodness! !!    That tile is taunting me too!!!!  And you will be happy to know that some of the techs play music in the room sometimes.  :)  So glad tomorrow is Friday and halfway through for me (lucky #13) I am so red, and begging for aloe!!!  Why only glaxal base?

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  • 70charger
    70charger Member Posts: 963
    edited October 2014

    Clarrn  What I did was cheat.  As soon as I was done on Fri, I'd go home & put Aloe on, Then after a couple of hours, Glax.  After about 4 hrs, I'd wash off Glax & repeat with Aloe.  Did this on Sat & Sunday morning.  After the 1 application of aloe on Sun I only used Glax.  I think it helped me, but we are all diff. Just make sure no alcohol  in aloe. Oh and for the itching, get doc to prescribe hydrocortisone cream.  Wonderful stuff.

    Carren!  There u are.  Sounds like u had a rough time.  Glad that part is over for you. I was surprised your RO said no more than 10 mins a day walking.  Seems like a lot of women do the 1/2 marathon or more.  That is so not me.  I just get my exercise from old fashioned hard work.

    I noticed that if I'm in the hot sun & or it is hot out, I get the itchy little red rad rash.  ( try saying that 3 times lol)  .  My hair was originally naturally curly.  My post chemo hair is a lot thinner, poker straight on top, wavy in center & curly at bottom.  Hard to deal with, but glad it came back.  Oh & it is VERY white, whereas before it was salt & pepper top with dark brown under.

    We are getting ready to go to Mexico for 2 weeks. YESSS!  Gosh I HATE winter.  We have also decided to spend xmas in Las Vegas.  Kids can all fend for themselves this year.  We come first this year not them.

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  • Carren-LB-at-2-0-clock
    Carren-LB-at-2-0-clock Member Posts: 116
    edited October 2014

    Aloe - I wanted to do that so badly but was chicken to do so. 70Charger - I think they really need to do some research on the aloe aspect. I have edema in the left over breast (sound like chicken left overs hahaha) ... I digress.

    My LB post-radiation looked like I had just come from laying in the Sun for the weekend - all tanned. I called it my "Baywatch Boob" - Nice, firm (edema) and uplifted (post surgery/edema again). Compared to the original version on the right side that was snow white, large and hanging to my waist which I called my "Granny Boob" - age related issue! LOL The BB is not quite as dark as at first and slowly blending in with the other one.

    Hang in there cllarn - it really seems time consuming - going in every day - but it WILL be over soon. Do not be shy, mention any changes to the med staff! Let them know about any and every twinge, concern and such. They have heard it all and may have some good advice for you. I tried to get something other than the glaxal - but they do not have any 'studies' done on it so they just stick to that. SO, I think aloe would be fine. I heard women put it on right after treatment (from other BCO blogs) I just do not know if it will affect the rads the next day.

    Exercise advice - crazy eh! I mean, really? If I sit for more than 10 minutes my left knee seizes up - totally unrelated - ha ha - or is it??? Need to see the family MD about that. So, if I can't walk and can't sit that leaves standing in one spot.

    Loopy

    Humour goes a long way with this cancer business. If I could not have laughed with friends and my inner -all be it weird- sense of humour - I am not sure I would have stayed positive. It is only for a season.

    Speaking of which - 70charger - MEXICO! Yes! Warmth, remember what the rad people say 'do not expose the site to sunlight' hahahahahaha That STILL cracks me up. So no nudist camps in Mexico for YOU!  Have fun, dig your toes in the warm sand, read a book and look up and see the beautiful blue waters, smell the sea breeze...cllarn and I will be there with you.

    Vegas - let us know what you do there! :) Forget that bit about 'what you do in Vegas, stays in Vegas' we promise not to tell the kids. LOL  Have fun.

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  • 70charger
    70charger Member Posts: 963
    edited October 2014

    image

    This was from our room in April.  We have requested the same room.

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  • Carren-LB-at-2-0-clock
    Carren-LB-at-2-0-clock Member Posts: 116
    edited November 2014

    70charger, beautiful. my sister is looking for an all inclusive right now, anywhere warm! lol

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  • 70charger
    70charger Member Posts: 963
    edited November 2014

    OH ! I forgot to tell you guys.  2 months ago I got my very 1st tattoo.  I got the Mopar symbol on my left ankle. Now I want more. hehe. My Bad

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  • newinab
    newinab Member Posts: 12
    edited January 2015

    I am living in Bonnyville AB

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  • newinab
    newinab Member Posts: 12
    edited January 2015

    I am living in Bonnyville AB

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  • 70charger
    70charger Member Posts: 963
    edited January 2015

    Welcome newinab! Sorry we have to meet like this.

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  • 70charger
    70charger Member Posts: 963
    edited January 2015

    bump

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  • Carren-LB-at-2-0-clock
    Carren-LB-at-2-0-clock Member Posts: 116
    edited January 2015


    Welcome newinab.

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  • clarrn
    clarrn Member Posts: 557
    edited April 2015

    We've been quiet. Hopefully that means most of us are out enjoying life. :)

    Carren- if you see this I was wondering how long it took your open wound to heal? I was unfortunate to develop a bad cellulitis after my implant was put in and had to have it out. Due to the large amount of infection, it has to heal open with home care packing every day. It's been 4 weeks so far for me, and I start on a wound vac tomorrow. I know our wounds/healing times are not the same but I am just looking for an idea.

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  • HopefulJenn
    HopefulJenn Member Posts: 34
    edited June 2015

    Hello ladies!

    I'm from Fort McMurray, 4 weeks out from my lumpectomy. I'm spending time at my parents' place while I'm recovering and now I'm waiting for the call from the Cross for my first meeting with an oncologist. I don't know yet if they'll recommend radiation and chemo or rads alone. I'm 35 so I think that throws a wrench in the works. I'm curious if they'll give me any more tests or not. I've only had the original mammo + US, along with lumpectomy + SNB. I know my tumor was very small and node -ve but I really want a breast MRI + scan to make sure it hasn't spread anywhere. So, here I am, doing more waiting! I've been to the Cross for my surgery and everyone was great but, for those of you who were treated there, how was your treatment at the Cross?

    Thanks and hope to chat more soon

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  • HopefulJenn
    HopefulJenn Member Posts: 34
    edited June 2015

    Oh! And does anyone know if they do Oncotype testing in AB? I'm thinking it sounds like another good piece of info for decision-making.

    Thanks

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  • 70charger
    70charger Member Posts: 963
    edited June 2015

    Sorry to see u here Hopeful. I did not have my surgery done at the cross, but my chemo & rads were done there. Your pathology from your SNB will tell if it has spread or not. I do not know if they do the oncono testing. The waiting is the hardest part. Glad u are with family to help the time pass. Feel free to ask any questions.

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  • clarrn
    clarrn Member Posts: 557
    edited June 2015

    Hi Hopeful. When I was diagnosed they did not fund Oncotype testing... but I wrote a letter, and so did many people and now it is funded if your doctor decides to order it! It usually gets sent with the initial surgery so I am not sure if they saved pieces of your tumor to send away. As far as further testing outside of the breast they do not recommend for small node negative tumors. If you go to this web page you will see the bulletin on Oncotype DX and also staging investigation standards for Alberta.

    http://www.albertahealthservices.ca/cancerguidelines.asp

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  • clarrn
    clarrn Member Posts: 557
    edited June 2015

    Oops and click on the breast cancer section under access the guidelines. :) Hope that helps! Being young with this is hard. Feel free to message me!

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  • HopefulJenn
    HopefulJenn Member Posts: 34
    edited July 2015

    Thank you so much for the link, clarrn! 

    If I had read all that information after I got my path report, I would have been in a much better mental state this last week as I waited for a call from the Cross! I don't know why, but a few weeks after surgery, when I started to feel much more normal physically, my mood started to drop. I'm a planner, it makes me feel comfortable if I know what's going on and, especially just recently while I was waiting for an appointment with the oncologist, I've been extra emotional and feeling helpless. But now that I've seen the guidelines they work off of, I have a much better idea as to how the conversation will go. My appointment isn't for another 2 weeks and it's with a radiation oncologist. The fact it's with an RO and from the guidelines, I'm pretty sure they're going to recommend rads. But I also fall in a couple of grey zones in the guidelines, so I can see that it will be an interesting conversation!

    How are you doing now with your wound? I really hope it's coming around and healing well for you and you can hopefully enjoy the summer!

    And while I know this is incredibly hard for anyone to deal with, I agree, being young has it's own set of challenges. It's tough even just walking into an office for an appointment and being surrounded by generally much older faces. I hope you're coping well and ditto for me, feel free to message me :-) 

    Thanks again for the info!

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  • HopefulJenn
    HopefulJenn Member Posts: 34
    edited July 2015

    Thanks for the reply 70charger! I agree, the waiting is incredibly hard. It seems like this whole ordeal has been waiting for one thing or another the whole time.  I am so happy I'm with my family, they're being so supportive. And thank you ladies for your support, too! It means a lot

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  • clarrn
    clarrn Member Posts: 557
    edited July 2015

    I have my last home care appointment next week! This is how an open explant heals... not pretty. As I am no longer a candidate for further implant I will have to decide if I want/or if I am a candidate fir a tissue flap. If not I will get my scar tissue taken out and revised. Right now I am just leaving it for 6 months, I am so sick of surgery and complications! :)

    image

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  • HopefulJenn
    HopefulJenn Member Posts: 34
    edited July 2015

    Oh clarrn that looks painful :-( I'm so sorry you're having such a tough go of this. I agree, surgeries suck! And complications are horrible and the last thing anyone needs after a physically and mentally draining surgery. I hope you're doing your best to take it easy and I'm sending very gentle hugs to you

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  • 70charger
    70charger Member Posts: 963
    edited July 2015

    clarrn That sucks. My daughter had her c section burst with infection & had to let it open heal.  Make sure your Dr triple checks that all infection is cleared up. My daughter had a pocket of infection still showing 5 yrs later!

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  • clarrn
    clarrn Member Posts: 557
    edited July 2015

    70s how do they check? ultrasound?? the bottom of mine (where my autoderm is in there) seems more red today, grr.

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  • 70charger
    70charger Member Posts: 963
    edited July 2015

    Yes, ultrasound or x-ray . Do u have to pack yours? Hopefully they used seaweed, it worked wonders for my daughter.

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  • clarrn
    clarrn Member Posts: 557
    edited July 2015

    They packed it for 108 days, sometimes seaweed, sometimes silver, sometimes a wound vac. Thousands of dollars of expensive dressing materials over the last 3 months. But today they said I am officially discharged from wound care!!

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  • 70charger
    70charger Member Posts: 963
    edited July 2015

    Congrats??

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  • NorthernCanuck
    NorthernCanuck Member Posts: 44
    edited July 2015

    Oh, I like this post. It makes me feel at home.

    70charger: Thx for the msg. I haven't been around much but back now.

    clarrn: Oh my goodness, that looks bad. I hope you feel better soon.

    How about that Cross Cancer Institute,eh? The first time I went was for a second ultra-sound as the Dr thought the first one was incorrect. Anyway, I was not at all nervous of the ultrasound. But as I was driving towards it and it came into view around the bend, I started shaking, and hyperventilating. I had gone there from work and just drove their by myself. Whew! It was just an emotional reaction to the IDEA of going there.

    In this emotionally charged state, I stood in line to check in with 2 pieces of ID and saw that huge wall of names behind the waiting area to the left of reception. I looked at it and thought: "Oh my goodness! That must be all those that didn't make it!" So, I asked the elderly volunteer who was guiding me to x-ray and he said "Those are all the donors". Whew!!! What a morbid thought. But it is kind of funny, though.

    I've been there one more time since. I now have my red card. I had to get wires for the lumps & they wired both so that made me feel better. It turns out the original ultrasound was correct and the Dr was not, so having the two wires gave me confidence. Then the pathology turned up one more lump that nobody had detected in all of those mammograms and ultrasounds. It was a small, intermediate grade DCIS. So are we sure there are no more? And I had ADH last year. It makes me nervous to be honest.

    Anyway, good to find this post. Like I said, it makes me feel at home.

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  • Lookforward
    Lookforward Member Posts: 392
    edited July 2015

    NorthernCanuck

    Sorry that you have to join us here. I felt the same as you on my first visit to the cross, the diagnosis, the treatment plan and having your life turned upside down is very overwhelming. It does get easier and you are in good hands. I have been going to the cross for a year and have one followup appt. left and I'm so ready to move on. Wishing you the best

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  • HopefulJenn
    HopefulJenn Member Posts: 34
    edited July 2015

    Hi Northern! While it's never a happy occasion to see someone else here, I'm happy you found this thread

    The first time I went to the Cross was for a 2nd US to make sure they could find the tumor before surgery. I found it intimidating and stressful, too! But after I talked to a few people and realized how nice and efficient everyone seems to be, I felt better about it. The 2nd time was for my tracer injection and then the 3rd was for surgery and everyone has been great there! My Mom even found a snazzy pair of sandals from a seller set up in the main lobby!

    It looks like I'm on a similar timeframe to you - I'm headed back to the Cross next week for my first meeting with an oncologist. I'm also doing the new patient orientation and have an appt with a nutritionist. I figure since they have all these services available, why not use as many of them as will help me? I still have no idea where I go in the place, thank goodness for the kind volunteers!

    I wish you the best of luck and please keep us updated on how you're doing!

    Jenn

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  • NorthernCanuck
    NorthernCanuck Member Posts: 44
    edited July 2015

    Hi Jenn,

    What date is your appointment? Your treatments sound so similar to mine (1st for US, 2nd for tracer and wires for finding tumours) but I had my surgery at the Mis.

    It would be funny if we had the same date for initial meeting with oncologist. I understand that they are called New Patient clinics.

    Kari

    Oh, never mind. Yours is next week and mine is first week in August. We should definitely keep in touch though because I understand the chemo is done in a huge room filled with stretchers and you may be there for many hours, depending on treatment.

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