Canadians in British Columbia

Marianne. Thx so much for all your help. Surrey breast health clinic doc Jantzen was very good. First she humed and hawed asking if I felt bone pain as she would have sent me for bone scan. I just kept saying my pain was deep into chest only in reconstructed boob. She examined it asked me all about my implants thinking maybe I had implant problem but it was fine, so she asked me would I do CT that day if they could fit me in. I said absolutely and was put in by noon. Total time at hospital four hour. Practically a record! Perfect!

Busy day chugging water trying to flush ct contrast out of body. Yuck!

Yes I agree parking away a bit from bcca is good exercise. I usually find something around 14 th ave. neighbourhood for two hours. But sometimes I get nervous thinking I may get towed. I’d like to find something free for all day if need be. I may have to hunt for that!

Your on last day Ibrance today right? I hope. You sound like your have time of your life overseas. You go girl!

DearLife, I am a fellow rural Canadian and have read with envy about people who have 'teams' and nurse navigators. I have had to be my own advocate and the squeaky wheel and just like you live in a small community with revolving doctors. It is true (for me) that my regular doc has zero input into anything that was happening with my treatment. He makes no decisions about any of it. But he could have acted as a central figure to keep his finger on my pulse, so to speak, and see how I was doing with it all. He could not have been less concerned. I finally fired him and found someone else, which in rural Canada is no small task!

Here is how my gong show went:

Bad mamm, needle biopsy suggested, I said no to needle and opted for surgical, to get the clearest possible sample.

Surgeon tells me it's cancer, I decide on lumpectomy , she schedules the surgery. She made no suggestion as to further treatment, just told me the next stop was to wait for a call from the cancer clinic. Wait. Oh my god the waiting goes on FOREVER!

Cancer clinic said I would see Dr. X for radiation and Dr. Y for chemo. I then asked for my chemo at a different hospital in a different town and it's then I fell through the crack. Somehow this request got lot in translation and had I not been on the ball, making calls instead of waiting for the phone to ring, I would still be waiting!

In my case I met with the medical oncologist and requested the Oncotype test. Decisions about treatment waited for the outcome of this test. Then met with radiation oncologist who told me her plans.

I had 16 shots of radiation and after that, having heard by the Oncotype that chemo would not benefit me at all, I started tamoxifen. And here I am with a baked boob, lymphedema, a frazzled brain and thanks to tamoxifen growing a beard that makes Hub jealous (just kidding, it's only a few whiskers, but boy they are epic!)

I hope you find your way through this maze but it is more complicated being rural. Not impossible, just more awkward. Good luck to you.

dearlife. I do like university hospitals as the teaching staff is on cutting edge of new techniques. It's true you might have students in your surgery gawking at you but I think you can request the teacher who is surgeon to do your surgery not a newbie. Runor is right we must track down and hound everyone for follow ups etc. Easy to have your file disappear.

Runor.lol I would like your set of whiskers implanted to my dwindling non existent eyebrows that tamoxifen finished off. Anyone got microblading done! Can you still get mri or head ct scan if you get microbladed eyebrows? I heard you could not. Idk though?

Ok not into a dither yet but my recent CT is requiring a follow up appointment next week which tells me 99 percent that I'm back on the cancer merry go round. No surprise here but I wonder if it's a bone scan to see if I'll be into Mets. Now that I wouldn't like.

Dear Marian. You are an inspiration, living life to the hilt and so much energy to give to others. Great tip to sign up to get all my documents from BCCA. And yes, deep breathing helps a lot.

My DH and I are planning a trip to NZ next spring, probably the North Island. Now this is the kind of “journey" I can look forward to!

I am a Galiano gal, not far from you. I have island friends who had treatment in Victoria and were very happy with it, though it takes a whole day of ferry travel for 10 minutes of radiation unless you stay at the lodge.

So glad you enjoyed your trip without problems. Safe travels home!

Hugz, fingers crossed that you get news you can deal with. I am worried for you! As for eyebrows, have to be like some of the young girls I see lately who draw them on with a fat Sharpie. Vivid, black, dangerous brows that loom out aggressively! I admire these monumental eyebrows but it's not a look I can wear.

DearLife, I didn't have a rough go, I think. I did have a rotten surgery day but that was nobodies fault, who knew I was a bleeder? I did cause a bit of a ripple when I asked to work with a different oncologist than I was assigned. They told me, "BUt he's not part of the cancer agency." I had no idea what the significance of this was. Still don't. He treats patient the same way every other oncologist treats patients. I think he is uber competent and a snazzy dresser. Also has nice teeth. This is very important.

DearLife, I think your tumour falls within the category that qualifies you for the Oncotype. Ask about it but do it soon. It does take time to get the results back and you want to get the ball rolling without more of that good old Canadian waiting!

Mariane when do you start. I may join your time frame but at least not until I'm back from mountains on tues. Towards month end would be better.

Hey my daffys been blooming for a couple weeks. Yeah spring has sprung! Clocks jump forwards soon to. Love it!

Welcome DearLife. Sorry for your missed mammograms but glad you had many years of not worrying. I find the worry to be the worst part.

I am always inspired by Marian and come here to read of her adventures. I wish I could learn to be as brave with complications and set backs.

I too looked into the study at UBC and was reminded how lucky I am when I read that the criteria required that the pain level be a 4 and I realized mine (neuropathy) might not always be a 4 but combined with the number taxotere did on my digestive system I am always in pain. Relatively speaking though I am lucky.

I feel like I was traumatized by complications from an inept surgeon more than the diagnosis. Failing chemo or rather being failed by chemo actually felt like dodging a bullet when I read about how many here suffer side effects. My oncologist could use a personality tweak but he is knowledgable and will answer questions. He did soften at the end as well.

I occasionally worry about not having had treatment but metaplastic doesn't usually respond to chemo so *shrug*.

I feel that Callanish.org has helped me more than anything. I have gone to a cancer retreat which was amazing and then attended a writing retreat with them last fall. I feel like they are saving me. I am also going back to Inspire Health this week after being away for 2 years and will do their chair yoga.

Hoping for peaceful days for everyone...and some sunshine would be nice. xo

Hugz I paid for my first 2 years at Inspire but then found Callanish and love it. I am going back to Inspire for exercise. We are lucky to have these supports.

Take care

Hi Hugz, I went to a Callanish retreat almost 3 years ago and then starting attending programs in the city. It used to be that the centre in town was for people who had done a retreat but there are waiting lists for retreats now so they allow people to attend meditation and maybe other stuff??? in town. Really the retreat gives you an idea of what the community is like so it makes it easier to get a feel for it before joining groups. The website shows a calendar of what is available.

The retreats are amazing. They are held at Brew Creek near Whistler (google will take you to photo gallery of Brew Creek). They have some scholarships for people who can't afford the fee. They are 6 days. I haven't talked to anyone who wasn't blown away by their experience. There is a video on the Callanish website of a young persons' retreat.

One of the centre groups is a writing group and last fall they had a writing retreat at Brew Creek and I attended (and loved) that.

I find that Inspire Health has a very different culture. The government pays them whereas Callanish is non profit so I think IH has to prove that they need the govt money by bringing in more people. They also seem to want to be seen as having helped. It feels more commercial to me. I have never felt the warmth I feel at Callanish but it is very useful for exercise and nutrition info. I am lucky to live close to both places.

You can always call Callanish to see how it feels for you.

Every little bit helps I think and we are so lucky to live in Canada and not have to think about what a treatment will cost.

hugz4u, what good news and so happy you are not joining me though I will be taking you up on LE info! I love my RMT LE practitioner but every bit of knowledge helps. I also have an appt. later this month for an RMT who specializes in scar tissue release. I only wish that RMT's were covered by our insurance but the fact that they do cover Ibrance and Faslodex and my other meds is so great that a few hundred for RMT I am happy to pay.

Wrenn I know you have been very happy with Callenish and if I were still on the mainland I would try it out. As for InSpire it is now 60% covered by govt. and the rest if fund raised. I joined in Victoria and so far have have used their exercise expert who did a comprehensive plan for me and I see her again when I return. I know I will miss the MBSR gang at Vancouver BCCA. For anyone who has not done Mindfulness Based Stress Reduction and lives in the lower mainland and can get in for the 2 hour weekly sessions (8) plus the one day Sat. retreat, those of us I know who did it have thought it the best course ever. Even if you do not become a practising meditator, many small tips stay with you. Sarah Sample who started it at BCCA 18 odd years ago, has retired but I believe Melanie MacDonald is carrying on. It is usually offered a few times a year and best to get your name on a waitlist. Also not good to take it during active treatment though I did mine during rads.

DearLife, I still refer to Susan Love's "Breast Book" and did you know she had cancer a few years ago? Not BC but she said her treatment gave her insights she never could have had before. I finally got into one of their studies in San Fransisco on lymphedema but then along came my new diagnosis so I had to say no. I was to have gone there en route to NZ.

Runor I will never figure out the ways of oncologists in BC. Mine is a contractor to BCCA. I do wish he had been my MO when I was diagnosed as he had nothing to do with my treatment plan as it was started only days after dx and he was on holiday. I only mention this because last appt. we both got a bit "excited" and he said I was adversarial which I was not. It was more miscommunication because I was really upset that day and came across as being not really informed about the whirlwind in August I think. He made a comment about he not being part of that "gang" over in Vancouver. All OK in the end and for me it was just part of how I look back to dx and knowing now that they wanted to start treatment kind of weeks before as it was so f***iing aggressive just as my first BC was~~unusual then for my age and hormone receptors.

Two days to go until I leave for home and I am having several hours on my own. I have felt vaguely unwell the past few days and chalk it up week off Ibrance and neutrophils and WBC cells etc. working their way back up. I am loving the time off to catch up on posts too. This was my view earlier this AM.

hgz4u, I believe that our MO's in Victoria have one major positive and that is that they do not do research there and so have more time for us. My MO feels that way and we do get on well for the most part.

Hugz, I have no idea if my MO is on 'contract' or not. To be honest I didn't pick him because of anything I'd heard about him, in fact I had heard that he can be quite prickly and hard to deal with. I wanted to work with him because, thinking I would have to have chemo, I wanted a closer drive home from the hospital. The assigned oncologist was a worse drive in summer traffic and I thought no, just no. So I asked to go with the onc in the closer hospital.

I do not understand how an oncologist can't be part of the BC Cancer Agency .... whatever. I have enough to worry about other than the inner political wrangling of the medical system.

Runor. That was my dilemma to. If I was to go back in treatment I didn't want to have to have my family drive me but I would put my big girl panties on and do the drive myself. Surrey would have cut drive time in half. As it stands when I went for CT the breast doc said all on her own without prompting,"well if your reoccurring you'll want your old MO in Vancouver." That kind of sealed the descision for me. My MO in van is a smart cookie, just needs to stop and become a human again and not a robot. I do have to give it to him. He does work hard.

As it stands as of today I believe I'm off the cancer merry go round....well... maybe I'm off the hook today but who knows about tomorrow. Cancers a crapshoot.Ok girls I'm packing up the car for mountain trip tomorrow. I wish you all a great day and that something small brings you joy.

I’ve just taken a pic of pure joy in my yard just now and posted for all those that can’t get out cause their feeling rotten. I hope it lifts spirits.

Dearlife. How delightful. What good news. Keep us posted. So hope you will be chemo free.

DearLife and Hugz4u, so glad for both of you and weekend too to celebrate.

Moth, I do hope that this chemo treats you OK~~I never had febrile neutropenia, only low Hg once which long ago put me in VGH for a weekend of great care and a couple of transfusions. I do fear neutropenia as it is the main S/E of Ibrance. I think I escaped it yet again this month though I am winging it with no blood work until I get home a day after I start cycle 8 of Ibrance.