Canadians in British Columbia

Pots

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

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

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

wrenn

Hoping for smooth sailing tomorrow Marian. You have a very strong base from what I have seen. You handle a lot and will do well.

Pots I hope the trial is successful with few side effects.

Thinking of both of you tomorrow.

Eily333

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

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

Hugs, Marian xo

marianelizabeth

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

wrenn

Wow Marian, You are amazing. I am excited on your behalf for the relief you will get from this procedure. Hope you have a restful night and rest of the recovery.

runor

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

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

DearLife

Marian, I hope you are feeling better every day!

❤️

Pearl

marianelizabeth

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

Great news, Marian!

Elderberry

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

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

koshka1

we should plan another get together???

Kish

marianelizabeth

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

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

This is good news indeed, Marian!

cathyAA

Hi Ladies,

I was diagnosed with IDC, > 5 cm, Stage III, locally advanced, right breast in June of 2011. I had mastectomy, chemo, rads, hormone therapy. I have been cancer free until now.

I just had mammogram on my left breast and it came up BiRad 5, highly suspicious for cancer. I am having a core biopsy this Friday.

I had all my treatment for my first bc in Ontario. I'm living in Kelowna now and I am wondering about wait times for surgery, biopsy results etc. Anyone have any experience with breast cancer treatment in Kelowna out there?

cat

akmom

Hi Cat, no experience in Kelowna but just wanted to say welcome and please keep us posted with your results xx

runor

CathyAA, the BEST medical treatment I have ever received was during my stay at the Cancer Lodge in Kelowna. Slick as a whistle how that cancer centre works. I was truly impressed. Living in Kelowna you will get to go home at the end of the day. But for so many in BC that lodge is a godsend. I met people there during my stay who I will never forget.

I don't know if anything is any faster in Kelowna but the average for appointments and procedures and results seems to be 3 weeks to a month. If you have had medical treatment for anything in BC you get the whole, hurry up and wait.

I am sorry to hear you are heading into this nightmare again. I fear it. I made it through once. I do not know where people find the fortitude to put their big girl panties on and have a second go at it. I wish you well and hope you find a good team there in Kelowna.

moth

cathyAA - I don't have info about Kelowna but just wanted to say hi & welcome. I hope you're one of the 5% for whom the birads5 is a false alarm.

marianelizabeth

Welcome from me too cathyAA. Over the years I have heard good things too and nice to hear that from runor too. Runor, you live in Alberta now is that correct?

I came on to BCO today to remove myself from all threads except this one and one other that has a small group of us. I realized last night that many threads I was following were actually either unhealthy or just too much unneeded information. Runor I know you and I have been on same threads. What do you think?

After 5 plus weeks in hospice organizing pain management successfully with a final surgery on September 9th, I feel as though I am back to a more normal me. Despite a terrible day of nausea and vomiting yesterday whilst getting to lab for blood work and then the pain clinic I think I can make it to chemo this afternoon.

I have always loved and appreciated this thread and still hope to get well enough to organize a potluck in Vancouver maybe in November.

Ann (Pots) I hope your new trial is treating you OK, don’t want to say well.

Love to you all, Maria

Pots

Welcome aboard Cat, sorry you have to jump back into the cancer world.

Marian, good to hear from you. Sigh, yuck to the vomiting and nausea....hopefully things settle day by day. How is the chemo treating you?

Life on the clinical trial is never dull. First 12 days, I got this... I can do this. Then on Day 12, hold on....SE started with itchy rash on arms, legs and chest; then it hurt to swallow, cough or pee (maybe a UTI) probably from inflamed mucous membranes and the fatigue was crazy bad. Plus headaches. So when I saw the MO on Day 15 he stopped drug for 2 weeks to let me recover. I’m on antibiotics, taking Nexium and slowly feeling better, still not great. We’ll meet on Oct 7 to see how we go forward. I don’t want to abandon the trial if I can help it, this drug offers a targeted treatment for the P13KA mutation I acquired post Taxol and is the best option.

Interesting you pulled away from some of the other boards, i’ve Shortened my list too to sites that are more focussed.

Be well ladies, if not a potluck I think we should find a date in November to meet at Cactus Club on Broadway. The second week of November is booked solid for me from Nov 9-15, otherwise it’s all good.

An

Eily333

A welcome from me too Cat, I hope all goes well for you in Kelowna.

I don’t post very often but try to keep up. Just like some of the other women I have taken myself off many boards. I like this one as its Canadian women..otherwise its too much information. I belong to a couple of Private Facebook Groups but I’m selective about them as well. I had a Prophylactic Double Mastectomy when i was diagnosed (just the right thing for me) so there is a group Flat and Fabulous..great connections of women who have gone FLAT and embrace it.

I mentioned in my last post I was getting results fo my CT..wonderful news that there is NO Evidence of Disease in Bone or Body!!! I had it done mainly because I had gone to a Naturopath and had a Circulating Tumour Cell test done ...thatresult was positive! I freaked out and the Oncologist wanted to ease my mind with the scans..not sure if it did or not! I’ll have to search the boards for others who have had the test..

Anyways..all the best to everyone..be kind to yourself!

Eileen

runor

MarianE, I am not in Alberta. I am in BC, a little over an hour from Kelowna. I could have driven to radiation everyday. But ... I am a rural girl and the traffic in July through this Okanagan Valley is a nightmare. (I hear all you city people laughing at me, it's true, I am spoiled). But I find traffic like that truly horrifying and I drive old clunkers without air conditioning and the thought of my burning boob bouncing down the highway in a blistering hot truck in that bumper to bumper traffic, oh hell no! The lodge was a blessing where I was not doing housework and yardwork and livestock care. It was the longest I have been on my own since before I got married. I was tired and I slept a lot. I also took slow walks around the waterfront and admired the incredible hydrangeas that grow there in the humidity by the lake. Gardens that were sights to behold! Jealous.

When I was first diagnosed I was on this site constantly. It provided the input and wisdom of others in my shoes, others who 'got it', others who could share how things had gone for them. I learned a lot here. There is a time after you are diagnosed that in your terror and bewilderment you look for anything to grab onto that makes you feel stable, safe, not crazy, not alone, and BCO was that for me. But after a while, around the two year mark, when thoughts of cancer became the 2nd thought of the day instead of the first (coffee being the first!) I began to not feel the same desperate drive to be here. Longer periods went between check ins and I whittled my 'favorites' down to a few threads where I feel I have something to contribute. I frequent the threads where the names of the posters have become familiar, where I picture them in my head, imagine their lives and have truly come to wish every single one of them well. I stay here because to ghost those places seems wrong. But I certainly do not cover the same broad range here as I initially did. I understand the need to prune it down to a few threads where you have felt the most support and camaraderie, MarianElizabeth. But if you were to disappear without a word, it would leave panic in your wake. Bewildered people wondering what happened. I think anything you have written to this point is extremely valuable right where it is. You never know how your vast experience that you shared might be just the balm a soul is searching for. I hope you do not delete your posts. But if you kept your check-ins and posting to the few places that feel like home "where everybody knows your name and they're always glad you came', that is perfectly understandable. That's how things have evolved for me, anyway.

Glad to hear you are doing better and I hope the bad stomach trouble goes away and stays away!

marianelizabeth

Runor, I appreciate your thoughts and did explain in a coupe of threads. I used to read Micmel's but it was one of the threads that was overwhelming. I would appreciate it if you would jump in on it or any others that you saw me on, to simple say that I need to rest and take more time for myself. Sorry I got Alberta in my head and do now recall you living rurally.

Ann, sorry to hear about the trial and hope you and your MO can and a way when you meet on Oct. 7th. I think you should plan the Cactus Club event as I am not in good enough shape to know where I will be by then.

I made it through chemo this afternoon after taking Zofran on recommendation of a nurse from BCCA who called me back after I left a message. I am thinking it may be due to a slight headache from a cerebrospinal fluid leak during my surgery. No one seemed concerned when I was getting the pain pump reservoir refilled yesterday.

Eileen, good news for you!

Marian

wrenn

Welcome Cathy. As you can see there are many wonderful women on this thread and I hope you will come often for support. I'm sorry you are having to deal with this though.

Marian, I'm so glad you are getting some relief. I wish you didn't have to have chemo now and could just recover from the procedure but cancer doesn't wait. I totally get narrowing down your attention on the site. It does get overwhelming. I actually find it confusing to keep things straight in my head (memory fading).

Pots, I hope things improve with the trial. I guess shitty side effects mean you aren't getting placebo? Not sure how all that works but I am glad you are in the trial anyway.

Our elevator will be down much of November and 2 weeks steady at some point so I can't commit to getting out right now. I need my walker all the time now since I can't walk far without sitting to rest my angry legs. I could probably hobble down 4 flights hanging on to a railing but need my walker when I get there.

I will keep checking here to keep up.

I hope everyone is having as nice a Sept as we are in Vancouver. Take care everyone.