Canadians in British Columbia
Comments
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I just got back from Summerland, Penticton & Oliver. Even with the fires & smoke, it's beautiful there. The days are warm & the nights cool down nicely.... lunch at Mirodoro at Tin Horn creek was fantastic!
Too bad I didn't think of pm'ing for a meet up, maybe next year... my dad lives up there, so I go every year.
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GG27... I live in Westbank. I'd love to meet up next year if you want. And I agree this time of year is just beautiful. Lunch at any of the wineries in oliver is special. I meet up with 3 girlfriends every year at the start of the Spring Winefest. They come up from Vancouver and we meet up in Penticton. Stay for 3 nights and do the wineries and lunch and fun.
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Tazzy, Spring winefest, now that sounds like fun!! My parents used to live in Westbank, but moved to Summerland a few years ago. I'm sure you know all the best wineries to go to, our favourites so far are La Friends in Naramata, Tin Horn Creek & Road 13 in Oliver. Cheers, GG27
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Tazzy, our neighbours just returned from a weekend wine tour in your neck of the woods; Westank was there first stop and they brought us a case of wine. Not that I can drink it according to the surgeon but I can admire it until some day in the future. I woke up really early really scared. I don't have the staging yet - will get that on Monday when I see the medical oncologist but it is just now really hitting home.
Marian
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Marian, it is a lot to absorb. It takes time to wrap your head around a diagnosis. Having a plan in place helps, getting started helps a little more. Having friends here who get it is a blessing. Going through the surgery and treatment is a process. We have to learn to take life one day at a time, and sometimes an hour at a time. That can be a challenge when one wants this all taken care of right now.
There will be someone here every step of the way to support and encourage you, to give you tips on everything bc related that you can possibly imagine.
Right now it's all new and raw. Take a deep breath and "Just keep swimming". Don't be afraid to ask for a little pharmaceutical help if the emotions and fear are just a little too overwhelming. And be sure to take someone with you to take notes at your med Onc appointment, or take a tape recorder. There's a lot of info to digest and options to consider; having notes or a recording to refer back to is really helpful.0 -
GG27: La Frenz is a wonderful winery. There are so many in Naramata... and Oliver for that matter. Well in all of the Okanagan - we are very spoilt.
You save that wine marian. My onc told me and so did the dietitian that everything in moderation is OK and 2-3 drinks a week will not hurt.
Seems to me that there is a lot of conflicting 'advice/information' out there. For me my MO and healthcare team know what is best for me.
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Oh Marian, my heart goes out to you. Know that there is a lot of women behind you, that we are fighting together, and that you will beat this. The advice from She is very good. Big hugs to you!
Tazzy, you are so right about the conflicting info out there. If we were to strictly follow all the 'rules' pertaining to what we may eat and drink, there actually remains very little that we are allowed, and we will all starve, I think. This is ridiculous. Early on in this journey I read all these things, and decided that I will eat and drink what is, and has always been, healthy and nutritious, and not allow myself to be drawn into this debate. We have enough on our plates. Balance and moderation, I say.
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She, Tazzy and liefie, thank you so much for your words of support. As for the wine/moderation, my mantra has been "moderation is my mantra." When I asked more about the alcohol yesterday, the BS says that because my estrogen reseptor is so strong and this cancer is estrogen loving, we gather than alcohol helps the cancer receive it really well, thus no alcohol. I see it as not a life sentence but for now will do it. Getting the plan going will indeed help. I tend to be proactive in general and am lucky to have good friends I can call on. An oncologist friend who my husband scanned and sent the path to last night is doing my stats and also sent back a reassuring message saying "BC has the most standardized protocols in the country. Any BCCA oncologist is very good. Karen Gelmon is well known but I would trust all the staff there." His wife talked about Gelmon last night and sneakychiquita also knew about her. Gotta love the connections with BC! Not Br. Col! But it was reassuring to hear about our province. His wife says he is the best oncologist in the world but that she might be biased. More humour and I will take all I can get. Off to yoga and a walk. BS says no swimming and no contact sports and even though I have really small boobs, a support bra. Seems that we don't want this breast knocked while the cells are still actively roaming.
I am doing OK at the moment! But I so much appreciate the support here and hope I can give back when possible.
Marian 0 -
Our oncology friend says probably "an anthracycline ( usually a regimen called FEC-100) followed by taxotere. Any of you familiar? Soon I will be able to be an active participant in the chemo thread!0
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Not familiar with FEC, but only too familiar with Taxotere. It is doable, and apparently a very efficient drug. We will talk you through it!
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Me neither... not familiar with FEC. Did taxotere last 5 tx's. It works and is doable. My tumour was 8+cm to start and when I had my surgery it had shrunk to 1.8mm.... so nothing but a dot. As liefie said... we're here to walk and talk you through it.
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Marian I did FEC at LGH but not the Taxotere. I had an allergic reaction to one of the drugs and had to have a PIC line inserted for the remainder of infusions.
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Marie, what is a PIC line? I will need a port as no veins at all. Looks like yours was well over a year from surgery to radiation? Just when I thought I could get away with a lumpectomy and some radiation! Ha! In for a penny, in for a pound as the saying goes! How are you doing now?
Marian
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Gumshoe... do it in style.. live it up.. and win win win!!
Wahevr.. Good luck next week hun.!!
ok, SHE .. huh??? staples ? surgical clips? WTH? omg.. i will not be pleased. I'm hoping the Onc on monday will give me an idea, since I have NO medical personal to look at my upper chest, seems the lump is growing from the bridge up to my neck, and other areas. what the hell is with the skin being so painful to touch? 3mths later?
ok, so my happy news!! An old friend called me yest a.m., oh, bla bla we say, she says she works at the Abby CC, I say. oh, great I'm coming there on Monday, she says yes I know,that's why I"m calling & if you want me to go to your appt with you I'd be happy to...well, fantastic!! I trust her a lot. shes reading my path report, cause it's all sounds like they didn't have much to work with for determination, and she's helping me to understand it better. also the deal with the 'weakly positive ER+' the numbers are very low, so you know how chocked i"ve been at the treatment I've had through my Ridge Meadows Hosp, and a 15 min appt with the Oncologist there.. well, my appt with the new Onc is 2.5 hrs. I know not the whole time is with him, but 1st a physical, then the rest is consultation! wow wow. you mean I'm going to be treated like a cancer patient? well, glory be! I had no information given to me via the hospital or Onc. So my friend after reading some of my path report was eluding to me having chemo.. now, I think I'm really sick because I'm thinking.. what I had to 'fight & advocate' my way to having chemo?? wth? not that I want it, but i do want what I'm supposed to have right? 3mths later, no one's checked me in anyway to see if there's new lumps or that kind of thing. I don't know what check ups or timing theres supposed to be. I know I'll have more information on monday, and I like information! I hate feeling in the dark & naive about things. it's my body, and I have a right to the best treatment. this is nuts that I'm excited to see an Oncologist.. have I gone crazy ladies?
In amongst all this are new appts for investigation of that TIA (i'm still in denial that it happened), but getting the heart doppler on saturday & had the neck on the other day. then supposed to get heart & stroke specialist & it's highly suggested I have an angiogram as so many in my family (ie my cousin 9mths older than me, kept having normal results from heart tests, but her gp just didnt buy it, got an angio done, & there were 24blockages in the back of her heart, & she was airlifted from kelowna gen to st.pauls for a 6 by=pass heart surgery) her 1/2 bro & her full bro had open hearts & my dad (her uncle) & her Mom.. all heart surgeries. all my greats had anurysms & died from them except 1 great uncle & my Dad is ok. so Dr's r saying.. um.. time to get checked out.) going to osoyoos to visit her tomorrow. they run a wonderful B&B if your ever down there, Bucs Bed n Brew, tell em I sent ya.. maybe get a discount
ok, there ya have it. now to go do crafts for the run for my team (just for fun) & visit with my gal here. hope you all have a great healthy NON pain day!!
xox
Cherie
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Cher, no you have not gone crazy - I too am excited to see my MO who I see on Monday! At least then we get an idea of what is next!
Marian
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Cher, that is wonderful news and not before time eh? Strange the things we now get excited about now. Doing a happy dance for you.
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Marian - a PICC line is a peripherally inserted central catheter. It's a flexible tube that is inserted into a vein in the upper arm (usually) and extends internally to a large vein in the chest. It's like an open IV line.
I had mine inserted in the IV treatment room at the hospital with ultrasound and used it from November to January (5 infusions). At the end of it the nurse just pulled it out and I was done.
The veins in my forearm collapsed and hardened when I had an allergic skin? reaction to the red devil chemo drug.
It was very easy to use and maintain and only had to be flushed out with saline every 1 to 2 weeks at the clinic near my home. At one time I had to do this myself while I was on vacation.
I couldn't get it wet but I found a company in the USA that sells these silicone sleeves that cynched at top and bottom and then I used a hand held vaccuum to suck out the air and make it water tight. With that sleeve on I could shower, bathe and go swimming.
Most of the time it was wrapped tight to my upper arm and hidden under clothes. I have a small pencil point scar where it went in to my arm but that is all.
It's not for everyone but it worked very well for me and saved the veins in the my hand and arm. When I started the Zometa infusions (after chemo) the nurses moaned because the PICC line had been removed but I wasn't prepared to have it in for 3 years while getting those infusions. In the end the ONC stopped the Zometa after 3 infusions.
Good luck with your MO appt on Monday!
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Marie, that was at Lions Gate right? Did they offer a choice of that or a port?
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Yes it was at Lions Gate with Dr Klimo (I miss him).
No they didn't offer me a port. I think that it was probably a timing issue.
I'd already had my mastectomy and had already done 1 round of chemo.
My MO wanted the PICC line in right away before the next chemo infusion.
A port is usually "installed" at the time of surgery or a separate surgery - is that right?
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Marie.. hooray for PICC lines!! I still have mine in. Had home IV, but darlin...wow.. has to be a sterile enviro with mask to change the IV cover etc, and be measured before & after change. they thought my #'s were wrong, so off to the xray I went. it goes in your vein that actually enters your heart, but the catheder doesn't enter the heart, just above it. I love the water tight thing.. i've used a hand held shower, with major caution. I'm not on anti=biotics anymore, hoooray hooooray!! I was grateful for the IV Machine/bag & doing it at home, but was so sick of that black bag.. bittersweet. will probably have it taken out early next week
. keep having blood tests, as it's really hard to get rid of the Psuedonmonus (sp?) & I keep getting little sypmtoms of getting sick.. geesh. like today when I woke, holy crap.. that big lump up in my upper chest hurt so bad I was Owwwing outloud & it's been hurting off/on all night, so with the NEW hot flushes (omg lol), I have to really take notice it's not a temp/sweat/clammy or the menopause lol.. well, if thats the least of my worries.. I'll take it. Marion, Marie is so right. My veins were so great at first, but no chemo yet, but the damn heavy antibiotics did a number on them, so ya, we're all happy for the PICC. anyone I've spoken to has said, with Chemo.. get a PORT so you don't have to deal with the |IV popping out of veins, then they have to search, & it's tough. with it on upper arm, so blinkin easy. forget it's there.
all the best of everything
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Yes Marie, a Port is a very small surgery. I don't believe it's even under general. the other gals in Canadian forum would surely know. the best is port from what I hear, because of the issue with toxins in the whatever..?? I dunno.. I've not even entered that area.. you have.
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No choice for me as even to get a vein for my surgery was tough. They got blown by nasty drugs post op from bowel surgeries years ago. I have had a look at the port thread and it is a surgical procedure under ansesthetic or twilight type sedation normally. I will go with what the MO says on Monday. Bone scan tomorrow.
Good night!
Marian
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Marion ..where are you going Monday? I'm going to Abby 12:30pm.my next door neighbor has bladder cancer, & has spot in morn there ...small world!
Hun, I've already seen an onc, thus is my 'other'opinion. Surgeon & Onc disagree on type & treatment. I'm so disgusted with Maple Ridge here. Will be interesting to learn who or what he (new onc) agreed with.
PS. I'm in Maple Ridge small compared to others but its nice to have the new connecter bridge.0 -
Cher, I have my abdominal CT scan at Mt. St Joseph's at 0930 Monday and my first oncology appt. at BCCA (Fairmont Bldg.) as the BCCA bldg. near VGH has run out of room.
Good luck with the other opinion!
Marian
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Marian - I didn't even know that Mt St Joseph's existed until a friend had a thyroid biopsy done there a few months ago. She said it was a good experience - as good as an experience as anyone can have with a biopsy I guess. Good luck with your CT scan!
Cher - I know what you mean about feeling for lumps and bumps. My MO doesn't even check me anymore. Thank god my GS does!
Since my mastectomy (left side) I have not had that side scanned. I would think that they could U/S it at the same time as a my regular mammogram. The tech told me that they used to do that but then stopped - I wonder why?
I still see my GS every 6 months (usually right before my MO check up). He feels me all over - hard and rough over and around my implant and makes me raise my arms and checks for dips and dimples. He also feels my back and neck. I told him I sometimes feel a lump on my left side neck under my jaw. When I press on it - it makes my pulse race. He told me to stop doing that because I could put myself to sleep - like they do in the movies by pressing on someone's neck! He felt my neck and said it was all normal.
Last year - 2 years after dx - I felt something on my right side (natural/reduced breast) and when I called the GS's office he saw me right away. It was some fibrosis but I was scared and was glad that someone was "feeling me up"!
I had to ask my MO to feel around my collar bone and neck. I have a swollen gland there and was really worried about. He confirmed it was swollen and I think that's what made him order the tests - that and I've been complaining about my neck for 2 years now.
Anyway I've come down with the flu (last night) and maybe that's why my TMs were raised and my glands were swollen??
I feel that BC will always be a dark cloud hanging over me...
For the first couple of years following DX I was caught up in treatment and then reconstruction.
This year - my 3rd year anniversary - I really felt like I was moving on beyond BC.
But now that my TM doubled again it's thrown me for a loop. I was getting ready to move on with my life and now I feel like I need to go on "hold" again.
I've got a fat grafting surgery booked for Nov 29 with my PS to fix issues with my reconstructed side - now I'm rethinking that...
AND I finally got in to the FAST clinic at St Pauls to have my feet fixed - now I'm rethinking that...
I'm not cancelling anything until I see my MO on Oct 3 but depending on what he tells me I may or may not go through with these appts.
I too am anxious and excited to see my MO. Hoping for good news but preparing for bad...
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Marie, what is TM? MSJH is a great little hospital. I worked there in the 80's and was quite happy to go back there. I was referred to the their Rapid Access Breast Clinic so just about everything except nuclear med has been there. Bone scan went find at St. Paul's this afternoon though it took 3 pokes to get the needle in for the injection and now bruising, no surprise to me.
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Hi ladies.. Had my blood work to get my port out woohoo. as long as everything comes back clear I get the port out.. Was put in under conscious sedation and will be taken out the same way.. Had to get fitted for compression stockings today
My legs are feeling so much better Hope for appointment with LE therapist next week 0 -
Marian, they sound like they are moving things a long quickly, I hope everything goes well for you.
Ossa,,woohoo so glad your port is coming out, when did you start having problems with the LE, was it well into the treatment?
Marie so sorry that 3 years out you still have that cloud....gggrrr! I guess we all will feel somewhat stalked by BC.
Cher I am thinking of you, it sure has not been a easy ride.
It's Friday tomorrow, thank god!...everyone have a great weekend and gear up for next week!0 -
bearcub.. who are you you sound familiar oooh it mut be chemobrain (sorry couldn't resist.. found your post on the Canadian tread funny)
I only have very minor LE but want to controll it before it gets bad. Have had the trunkal fullness feeling since shortly after finishing treatment. It come and goes. If I use my arm to much my body lets me know. My hand only started swelling about a month ago. It has gotten a lot better (both my trunk and hand) after my physio broke up some cording/scartissue..
Marian.. Glad you had your bonescan,, when do you get the results? The waiting is the worst.. You are in my thought..
Cher.. I am sure you will be happy with Abby Cancer center, everyone I delt with and are still dealing with have been great (plus thay have a Starbucks in the lobby).. Are you still planing on walking on Sunday?
Gumshoe.. I hope you are rich and famous by now.. We are all awaiting our tiaras
MarieK ..I have my fatgrafting cheduled Oct 26 I will let you know how it goes so you know what to expect
She.. Hope you are continuing enjoying your holiday
Tazzy... Hope you are enjoying smokefree few daysnin the beautiful Okanagen..
Lifie..how are things with you?
GG27.. Do you have family in s\ummerland? I do my SIL and BIL live there, love that area. It ia where I go when I need total relaxation
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Ossa - would love to hear how your fat grafting goes. Are you having it because of rippling over implants? Or to build up an area for your fipple? Mine is for both reasons.
Sorry to hear about your LE. I'm suprised that you have it with so few nodes removed - I always thought it came on for those that had many nodes taken.
"Knock on wood" - My arms are good. After my mastectomy and node removal I didn't have a problem with arm/hand LE but I did have horrible cording and slight trunkal LE. The cording went away with PT and the trunkal LE is under control (with exercise/stretching and no hot tubs for me!).
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