Canadians in British Columbia
Comments
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Pathology should not take that long; it is in my opinion unacceptable. Sorry Sneakychiquita and I thought my 17 days was bad. Today was probably one of my lowest days. Once diagnosed with a crappy agressive cancer and rushed to see an oncologist in a week with both scans done too in that time and now another long wait is one thing. Now I realize that the BCCA is so overworked that even though I saw my MO last week, she was almost an hour and a half behind and had to rush off at one point for what she called a small emergency so of the 2-3 hours I was to have had with her, it was maybe 45 minutes and even then the doors were locked as it was 5:15 and they close at 5. So I have many questions and no answers. I have put a call in and hope to hear back from the MO by Friday. At least I have chemo teach to look forward to tomorrow!
We went downtown this afternoon to see one of the VIFF films and I chose "Revolution" a 90 minute documentary on the state or our oceans which leads to the state of our existence. It was made by Rob Stewart, a brilliant young Canadian who first made "Sharkwaters" which has led to many countries banning shark fin soup and raising awareness in general. But I have to admit that tears were close through most of it - not the most uplifting movie on a down day for me but reality is good too!
Thanks Bearcub and Gumshoe, it seems that no matter how good it is for us with BC here in BC, there are some hitches in the system. Too bad CIBC Run for the Cure only provides about 15% of the money raised actually to breast cancer research etc. and I guess the rest goes to administration. Ah, the cynic in me rises!
Marian 0 -
Thanks everyone. I have so much work to do, it feels like I never left! And I'm so used to eating in restaurants, I expect we're having cereal for dinner tonight.
I'm still reeling at the length of time for those pathology reports. At the very most, it should be 5 working days. Bearcub, yours took 23? That is so unacceptable.
Ossa, Good luck with the port removal!
Sneaky: Yes, from what I remember, Karen Gelmon had a really great bedside manner, and never rushed us out the door. I expect they found a window in her schedule, nothing more, but for her staff to tell you that you have a "simple cancer" is really bad. Gee, if it's so simple, why are we all still dealing with it?
Marianelizabeth: Yes, I'm sure all the MOs are great -- she's the only one I know in Vancouver. It's so important to like your doctors. I loved all of mine except one, and I wish I had gone with my gut on that feeling
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The waiting game - I'm trying to stay on the positive with this one. Yes, the wait sucks and I'm envious of those who only have something like a 2 day wait for their path reports, but the fact is if I lived somewhere without universal health care I may not have been able to afford the insurance that would have given me that small wait time. Nor, would a lot of women. And maybe they wouldn't have given me the mammogram because initial investigations suggested that my lumps were just cysts. I had to ask for the mammo because it isn't routine for woman < 40 yrs. Would private insurance cover this after 2 physicians said the lumps were cysts and I should just track them for the next year to ensure they're not growing? Probably not. So as frustrated as I am, I'm still grateful. Although, I fully admit that my tune might change if I get my report back and it's shown that I have an aggressive cancer that may have spread during these months spent waiting.
Marian - There's a Scottish Comedy the VIFF is showing this year called The Angels' Share. Both screenings of it were sold out and so popular that they said they will try to add it at the end of the festival. Watch their website to see if they get it shown again. I didn't see it but friends vouched that it'll have me laughing if I get to see it.
CIBC run - That sucks to hear about the low % going to research, but it's somewhat predictable whenever there is a corporate sponsor. There are 2 cycling events (or more) in these parts that fundraise for cancer research, the Enbridge Ride to Conquer Cancer and the Ride 2 Survive. I can't remember off hand the amount from the Enbridge event that goes to research, but it's been reported to be quite dismal. The Ride 2 Survive, however, is completely volunteer run and pretty much all the proceeds from it goes to research. So if given the choice to sponsor a team, I'd choose the Ride 2 Survive. Hopefully, I can get back on my bike and actually ride the thing myself.
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hi Gals.. how's my support friends?? hope you all had a great Thanksgiving time whatever you did. I posted/whined in our Canadian forum...so will be quick here as I'm getting ready to GO TO MY 1ST TREATMENT.. wooohooo.. have my NEW TEETH & my NEW PHONE .. Samsung Gallexy Note--10" of happiness for me!! I love techy-gadgets & love doing facebook ('Cher Southwell you can add me if you like) was going to go alone today, but am now having a gf coming. Hate to put someones time out like that it's a long drive & my chemo should only be 1hr, but secretary said I'll be there 2hrs. guess all the other things need setting up. I still have my IV PICC in upper arm, so MO was real happy about that.
(for some reason I haven't been getting notification when someone posts in here, so have to fix that) my lil boy (dog) & I both got our hair cut ubber short yesterday, it's cute actually. ps. thanks for the 'likes' on the avitar lol.. was from the 'walk on 30th'.
welcome to any newbies, am sorry I'm rushing here... will have more time later to read all the postings.
ps. am going to ask MO, but my path report (i forgot about this) said Her2 negative (1/3) but my ER was ER (weakly positive 1/3) so why is one a pos for 1/3 & other a neg but has 1/3.. odd eh? as they've said any ER is a positive.. wouldn't that be true also of HER2?
have a great day!!
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Marian, I can't use it either when I use google chrome , try on e explorer. I actually got on using that search engine. You have to have the right java.... I tried down loading a couple of different java's they still didn't help on the chrome engine.
gumshoe, yes it feels soooo much better with that darn TE. The swelling is getting better and now I'm going to start doing the scar message , I don't want a hard scar !!!
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Welcome home Gumshoe! Hello to All!
Sorry to hear wait times are so dismal, I thought 10 days was bad .....
Cher, I hope your chemo went smoothly.
I'm pretty much over the crud, now trying to get caught up with work so this is just a quick fly by.
Best to all!0 -
Chemo was good. nurses awesome of course!! I 'was' a tad nauseated off/on, but when that all left.. massive blasted headache! I've taken everything I can with out OD'ing. trying to just carry on.. tummy ache too, but this all also could be a bit of my other issues.. that's what I don't like, is not know which is which,. all info & other friends say the other side-effects will come the next 2 days..hmmm, will wait to see. will deal with it as it comes.
Gumshoe: welcome back! hope your vacation was just what you needed!
She:glad the `crud`is behind you.. and dont overdo the work
Sneakychiquita: sorry to hear you have lousy wait time! 10 days She? uggg! Mine was about 7 days I believe.
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Cher, drink plenty of water!
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She - Glad to hear you're mostly over the crud. Must have been the magic beer!
Cher: Fingers crossed it continues to go well. New teeth can cause terrible headaches!
Sneakychiquita and Marion: Any news yet??
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I was told to call BS office at the end of Monday (day 22 since surgery). If results are in they'll do their best to get me in by Wednesday. Off course, I have other appointments that whole week so I bet there'll be a conflict.
I've stopped fretting so much. I think I've done as much research as I can to prepare for the different outcomes. But I still can't find much for women in their 30's who have low stage/grade cancer and receive only hormone therapy. All positive outcomes I find for this type of cancer and treatment refers to women who are 45-50 yr and up. So please feel free to refer me somewhere if you've come across this. And that damn mysterious 4-5cm mass that was never biopsied.... Okay, maybe I haven't stopped fretting.
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gumshoe, yes, news. Copying below from my original post today on another thread. Actually I pasted on all the threads I follow. Not sure if you all do that sometimes?
Sneaky, until you get the path I don't think you will stop researching. Just comes with the territory for some of us. I am glad that my MO figured that out for me this week. I worried that she would think I was out of line and a bit obsessed but I really think she "got it" and accepts my need for all information no matter how hard it is to hear. Also I am mostly over looking backwards to the summer closures and billions of cells growing while I waited! Honestly!
Friday was a big day for phones calls and planning. First call was from BCCA (Vancouver Cancer Agency) with an appt. Monday at 0745 for a PET scan. Big surprise as MO indicated it would not give us any more info on 7 mm lesion on lung which showed up on CT scan which was to be repeated in 3 months. Next, call from my MO. I ran into her Thurs. as I was heading into chemo teach and had just enough time (she knew I had called on Wed. with questions) to rip out the page in my notebook with the questions and hand it to her. So she called with the answers and was really good about all of them. PET scan ordered to reassure me (I figured as much) but she said also to give a baseline for the future. As SneakyChiquita said, onctotype tests not done here and same for Ki67. Well she did not really say not done, but of no value in my case and I do understand that. With my pathology it is not relevent; I need everything!
My MO told me Thurs. in the brief meeting that I can access all copies of everything and all I had to do was fill out a form asking for for their release and in a few minutes had absoultely everything from the beginning and every time something new is done, I just go the office in the cancer agency and pick them up. My MO did adjuvantonline for me. That was on my list of questions and my MO read right from the computer what my recurrence will be based on my age (and she put in very healthy 63 y/o female) and pathology. I am high risk and the numbers are not so exciting but I am a person who likes/needs to know all and for me, it helps that I know what I am about to battle with chemo, more surgery, radiation and reconstruction.
So, PET scan in AM, 2:30 PM chemo starts and Tues. I go to "Look good feel better" and also get my first Neupogen injection. We will celebrate our 29th anniversary in between. I figure that we will save fun celebrations for the 30th when hopefully I am done with everything.
One of the positives I took from my first meeting with my MO was that when I asked about getting (not) a MUGA scan she said those fro usually for women over 60. We had some smiles over that as clearly I am over 60! But she says that my heart is clearly healthy since I have doen 4 treks in Nepal in the past year. So she revised and said they are for women over 65. Not to downplay the need for a MUGA for women who may be at risk or for a baseline but in my case she is proably correct; just no need for me at this point. I am having enough tests and scans!
My husband just came home with 2 new apple trees and apples from Apple Fest at UBC and I see that the rain has stopped. Time to go for a walk. For PET scan no real excercise tomorrow as apparently they want the muscles relaxed.
Marian0 -
She: drinking lots of water & whatever I can get down.
was pretty bad the last few days!! pretty bad? .. rotten rotten...but.. thinkin I`m on the upswing now maybe maybe?
Marian: right on things are progressing quickly, I was told this is the way.
I had to cancel appt out in Abby yesterday due to being sick. they were very understanding.
have a whack of appts next week, 1 each day. so fingers crossed! I get so dizzy & off balance.. but will ask for rides if so.
hope ya`ll doing good.
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Cher, so sorry you're having a rough time of it.
Sending {{{Big Hugs}}} to everyone in chemo, I know it sux.
Ossa, are you having another procedure or was I reading from too far back and you were talking about port removal?
I just mentioned over on the big thread that we should think about starting up a Leftcoaster private contact list. Any volunteers? The easiest way is to have one person control a master list and keep it updated, and email occasional updates to everyone on the list.
My return is delayed by a few weeks, I'm gonna freeze lol all I have with me is a hoodie.
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She...Hi hope you are enjoying your travels.. You are right I am having another procedure done.. Had my port removed on the 11th.. Getting nipple recon and fat grafting done on the 26 If there is no one else available I can do the contact list i think you might need a hoodie, jacket gloves and a toque when you come back here.. Heard it snowed in Mission yesterday.. Rain here, nice cold afternoon
Cher glad you are feeling better.. be careful though as your immune system will be lower over the next while.. lots of colds out there
Off to work, then have to run in to Surrey (Jimmy Pattison) to meet with the anesthesiologist then back to work
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Ossa ... now I remember. Four days to Fipples YAAY!!!
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hip hooray.. so much better!! was bad enough with the SE's from Chemo, but was Strep that really killed me for a while there.
Yes Ossa, thanks hon, I've had that drilled into me as I have RA & all the Dr's been giving me lectures lol. have hand sanitizer will travel!! watching going into crowds, haven't so far. hated going into Home health for my PICC dressing change.. so many infectionist people there. but.. what can i do. they said if i'm sick when i have next round, they'll come to me..yea!
my lifelong friend that had BC (0ct 2010 til now going through everything) gave me her take on what happens. but she didn't get as sick with SE's the 1st round. she said that by the 3rd week you'll feel more like your old self,then back into the chair and start again.. 3&4th are hardest, but that's also her, I guess we're all different too. I was warned with all my underlying conditions & sensitivities to drugs that'd I'm most likely have a rough time.. but I didn't believe them. (i try to think positive... but..)
(((Marian))) & (((all going thru chemo now))) hugs. I armed my cubboards with all the suggested items for SE's.. & boy did I need them, but forgot the Imodium, so got some immed & so it only lasted about 2 days, but then off/on with both.. omg.. yo-yo-ville or what! lol it worked good right away, as I took a double dose lol. I guess now I know what to expect next, which is good as I was really taken by surprise this time. Ossa you mentioned that the 1st is the hardest, and your the 1st person I've heard this from, dang, hope your right!!
Its soooooo funny & also makes me angry at same time.. so many of my friends I wanna say.. you know.. walk a minute, never mind a mile in my shoes!! they're all just about arguing with my getting sick or not sick or hair loss or not hair loss. I was told that IF your MO tells you that you WILL loose your hair, you can make bet on it. These damn people who've not had cancer go by this person or that that they knew that DIDNT loose hair or get sick.. duh I wanna say..do you know what medications of chemo drugs they were on? makes me so mad! Chemo nurse told me hair will be coming out good just before Nov 1st treatment, but oh oh my friends know better.. omg! lord give me strength!!!! but so far, not a strand has fallen.. but my g/f said, one minute it was all there & next just falling out like mad.
what was others hair loss if any situation? my next door neighbour is doing chemo too right now & her MO said she'll only have thinning of hair. (she has different cancer).
well, back to bed for me now..seems new habit of insomnia and/or up for 2hrs during night since chemo)
Cher
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Gumshoe I'm still researching/trying to figure it all out even after the fact & I read that others do as well.
Marian - you go girl.. with your questions!! Sure hope your feeling better too by now!
Thinking of you all going through this & that! grrr.
Ossa- will be thinking of you & in your pocket on 26th hun!!
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Cher good to hear you are feeling better. for me the first treatment was definitely the worst.. After that I knew what to expect and could somewhat prepare for it,,,, as for hair-loss... You will start feeling tightness in your scalp as i you have had your hair in a tight ponytail.. This was my first sign of hair coming out.. Then there would be more and more hair coming out in your brush...
I would recommend you pick up a (oh crap can't think of the name of them .. chemo brain
) rolligthingy that picks up dust or hair from your cloths.. Looks like a hairbrush but has the sticky pad instead of brushes.... I used it on my hair when it was falling out i hand-fulls. I had cut my hair short by then.. Also wear a sleep cap this will save yo from finding hair allover your pillow0 -
Good to see lots of posts from the past couple of days. There has been no word from Courticemom so I can only hope that she is just overwhelmed since surgery and has not had time to let us know how she is doing.
The Imodium did the trick on Sunday night and back eating and gained back weight too. I am actually feeling pretty OK and only missed that Sunday for walking. I have been to several yoga classes but take it way easy. My daughter and I are off to Colin Dix's (NDP leader for BC) office at noon at there is a "Defend Our Coast" Action at MLA offices across the province. Then we will go out for lunch so an ineresting date with my daughter. I figure I may as well do something interesting while I am feeling good. BW and MO Monday and chemo Tuesday afternoon. I am tolerating the Neupogen without S/E. Touch wood!
Cher, hope you are having a good day! The rest of you too! Halfcan should be having her chemo as we speak.
Marian
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ooooohh I remember what it iss called now..a lint roller
it takes me awhile to remember sometime0 -
Oh my Ossa, I am laughing myself silly, you trying to explain the lint brush...thank you for that!!!!...you gotta love chemo brain....good luck with your procedure on the 26th...
Marian read your blog, it's great. We're you on global TV in front of the offices today?
Cher glad you are feeling better, the lint brush works awesome.0 -
CTV covered Dix's office but not sure if Global. Maybe you saw me though! Were there any MLA offices open for demos up there? How are you? I know it is cold up there.
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Ya Bearcub |I too laughed out loud at Ossa's description lol..
Ossa..lol I knew what you meant.. great minds & all that teehee! Sure will grab that..umm sticky roller lets say lol.. btw thanks for heads up on sypmtom for hair, so, actually I'm going to shave it all off, if it's going next week as MO & Chemo nurse stated, doing a fun-kinda-shave!! cause it just makes it all too real! just like the 1st sit in the 'chair' for me..was fine... then all of a sudden it hit! the reality! Just like all was fine until rolling to the OR.. major hit!... so thats a home run ok? enough HITS!!! (saying sarcasically of course)
WTG Marian! I had friends out here in MRidge doing the same, cops were called too, not sure if news was there! I was on my way to Abby for appt, which btw was amazing!! i'm so glad!!
Hope Halfcan flies thru with NO probs or SE's.
OOOOH btw.. finally figured out why my nose kept running.. nose hairs GONE yepper (very odd lol)
I've got 4 appts in Abby on 30th lol.. nice for them to book me in the 1 day, save trips. They're great!!
ttyl = night all!
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just FYI.. hair started falling out yesterday. heavier today (day 15 since #1) boy was the chemo nurse right on the money with this! yep need that lint roller thingy
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goodness it's quiet here!! is everyone OK.. or OK enough?
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It is quiet isn't it Cher? But I think posts are going on other boards, the Canadian one for instance. How are you Cher? My hair though buzzed, is coming out fast the past few days. I have felt not bad but sleep seems to be the biggest issue. Hope all is well with you the rest of you. Not much news yesterday on the time change but I did remember this AM so now still early!
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Morning... alls well here - yeah! just think we forgot to go on this board when we've been on the other one
. hugs to you xxxxx0 -
Marian, a lint brush works great to get the little hairs after a buzz...
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Good morning ladies.. as bearub said..a lintbrush works great..
Went to the Rain concert in Abbotsford last night.I as a good concert.. DS and DDIL was with us... they only knew two songs...sad....31 people turned up for a surprise dinner/concert for a bc sister to celebrate the end of her treatment
Have a great soggy
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Marian- I'm getting it shaved completely today. I had so much hair, yet very fine, but 1-2x's a day when it started coming out, I'd gently run hands through hair & get lots out put in sink, then in garbage(ugg) I had said earlier that I really didn't want that patchiness.
oh dear! just had landlady here (apartment building).. had silverfish (ugg which was found 1st day of my 1st treatment..boy was i upset) THEN my little doggy got fleas, havent' had fleas on a dog in decades! I think it's from the building or apartment? but I haven't been bitten. Anyways, just got notice what I need to do, and oh I wanna cry, cause I don't even feel like getting dressed! vacuum, mop floors, empty all bottom cubboards & wipe out (although I just moved in, so is clean..but.. ugggg) I really haven't anyone to do it, maybe get 1 person to help, 20yrs older than me too. I hate living so far from my younger family where they could help more...oh geeesh I'm REALLY whiny now!! I'm alive and that's great! so hard to talk/feel/be positive when ya feel crapiloa!
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