Canadians in British Columbia

Moth, the one thing you might want to do once surgery date is decided and then after when treatment plan is made, to find threads that are relevant. For instance when I did chemo starting in Sept. 2012, we had a thread Chemotherapy, September 2012 and guess what? That morphed into a Facebook private group, 15 of us met up a year later in Las Vegas with a huge rented house with pool and 30 of us are still friends. I see a few of them when possible. We remain a big support group.

Wrenn came to at least one of three lower mainland potlucks I hosted annually until last year and now we have moved.

Other options are local support groups or friends who have also had BC.

Keep us posted.

Marian

Prayers and good luck, Moth. Speedy healing!

Hi MarianE:

After having a scare when a new lump popped up in my good boob, and then hearing that the bad boob still has suspicious badness lurking in it ... I kind of fell apart a bit. There are lingering physical effects from this cancer. When I look back to how life was a year ago, I am shocked at the differences. The side effects from tamoxifen, the boob that is perma-tanned from radiation. The chronic low level pain I have 24/7, due to radiation I think. The worry. The mental black cloud. The cancer that has grabbed onto my head like an octopus and obscures everything. I wanted all that to be over and when I heard that the architectural distortion in my bad boob was still there, well, I didn't handle it well.

I have since spoken to my radiation oncologist who put everything into perspective. She has requested a 2nd opinion on the continuing architectural distortion to see if we wait and see or go digging around for another biopsy. But I do feel more settled after talking to her.

2nd opinion should be reported to me in the next few days. Fingers crossed.

hello west coast chums! I had the lumpectomy on the 12th and everything went well. At one point I was already admitted and then heard the OR got filled up with an emergency and one nurse came to say they weren't sure if I was just delayed or cancelled, and that was a bit unnerving.

but then another nurse came to whisper - they won't cancel you. They know why you're here, they're going to do you. And they did!

I was zonked all day yesterday, got dressed in the morning and sat in the living room, sussing out how I felt and hoping to make it to the Hillary book signing but the room was spinning and all I wanted to do was sleep, so my adult kids went alone and dh & I stayed home. I'm feeling much less stoned today. My pain is manageable with just otc meds and I've been outside in the garden for little walks with my dog.

follow up with surgeon isn't until Jan 9 though so a long'ish wait ahead now.

So, about the BC Cancer Agency services - can I say so far I'm not really impressed?

The website looked good, I read through all the materials, downloaded intake forms etc. Whoever wrote their web content did a good job of sounding supportive and caring.

I know my doctor referred me and I was hazy about the order in which things will happen next so I tried calling to talk to someone. And that's where the supportive and caring came more or less to an end. They say you can call just to talk if you're new but when you dial any of the numbers, you get one of those automated Press 1 for ____ recordings and none of them are applicable because they're all for appointment changes etc.

When I finally got a live voice it was just a frazzled, mumbly-sounding, super fast talking "how can I direct your call" receptionist. When I explained what I wanted, she hemmed and hawed and finally said "I think you want 'Name'; I'll put you through" and she transferred me to someone completely wrong who had no idea what I was calling about and as far as I could tell had nothing to do with this department.

I finally went through the whole thing again and did manage to speak to someone who is a new intake nurse and while she answered my questions, I didn't actually feel any warm fuzzies from her.

Is that just what it's like?

I'm not crazy about BCCA but did like the free Mindfulness course. The counsellors running that were good.

I am continuing to get support from Callanish.org. They are amazing. It is a little far for you to travel (the centre is in Kitsilano) but the people running it are amazing.

I think it will get easier for you...or maybe we just resign ourselves to shitty situations. :-)

Moth, not sure which center you will be at. Thinking you said Coquitlam so not sure if you go to Surrey or what? I was in Vancouver. The course Wrenn refers to is MBSR which stands for Mindfulness Based Stress Reduction and not sure any centers but Vancouver offer it. I too had done other practices but this one was right for so many of us I can't tell you. Attrition almost zero and some of us still go back for short evening refreshers. The woman who started at BCCA Vancouver just retired after 18 or so years of facilitating. Another social worker who is on mat leave should be taking it over. Jon Kabbatt-Zinn began it back in 1979 and nothing to do with cancer. One summer when I was depressed, my BCCA psychiatrist (yes, they are also there) suggested I do a one to one Mindfulness Cognitive course with a senior resident and that too was helpful.

Earlier on I asked to see a counsellor and that did not work out personality wise thus the other referral later on. Also InspireHealth in Vancouver is now free for cancer patients. They used to charge about $500 but got a grant and fundraiser. I found it here too and just started utilizing it.

I never talked to anyone at the agency before seeing my oncologist so that was probably about 2.5 months after diagnosis and 4 or 5 weeks after lumpectomy. My experiences once then are excellent. I am now at the agency in Victoria and again, I feel well taken care of.

It is so early on for you that it is tough to wait and see. I have always felt the "waiting game" is the worst.

At the top of my dx etc. on this site~~at the bottom of my posts, there is a link to my blog which I started with the help of my daughter in the fall of my diagnosis. Not sure it is at all useful but it does describe those early days when it was so overwhelming. I have just started posting again.

Marian

Moth, there is a forum for the stupid things people say. It can be truly mind boggling at times. Check it out to discover that your family and friends are not alone in the crazy things that come out of their mouths.

Ha! I haven't used Mary Jane but generally don't have too much trouble with nausea typically. They will likely give you Zofran which is their standard anti-nausea med depending on the treatment they give you. But be forewarned... it causes MAJOR constipation. I ended up with thrombosed hemorrhoids from that drug. I had six cycles of CEF and by the second cycle I learned to have an arsenal ready pre and post treatment. Laculose (not sure if this is the correct spelling but it's a god awful sickly sweet liquid that helps keep things moving) a couple of days before chemo and a couple of days after. Lots of apricots, prunes... you get the picture... and still I had to strain. White knuckle experiences let me tell you!

Moth, Great news and great that you have a GP who knew how meaningful this would be to get the news early. It is hard to find a good GP these days. I have a nurse practitioner at the cancer agency (they are available to those without a GP).

Marian you are such an education for me in so many ways. You are full of knowledge about so many topics and you have no idea how lucky I feel to have access to your energy for learning. Your attitude is amazing.

I hope you and all of the women here have a peaceful holiday. My daughter is in Victoria enjoying the sunny days for Christmas and luckily we are having sunshine in Vancouver as well.

Take care everyone. xo

hi all been a long time. Welcome to the newbies. Sorry you have to be here but glad you found this site. These ladies kept me sane when I was going through treatment. Hope you are all doing well Marian your place looks amazing I bet you are enjoying that view every day. Wishing you all a healthy new year.

I am finally having my re-reconstruction. New surgeon new procedure. I am having a lattimus flap Feb 22. Then going to Mexico with my son and his family in April. Hubby is not coming along this time as he will be starting a big project an can’t get away. The two of us are going to Norway in July for a few weeks. As we will be celebrating our 40th anniversary and my brothers 70th birthday Look forward to going

Hi Fembot. Welcome to the suckiest of clubs but at least we have each other.

I'm still in a holding pattern. BS follow up on Jan 9. Finally got the referral to the cancer center for Jan 24 so I guess that will be the day I find out / decide re chemo.

Hello adin,

I'm sorry you have to move during a stressful time. Vancouver Health Authority (VHA) has some useful links and phone numbers at this page breastreconstruction.vch.ca/information

Also in many hospitals and cancer centers, a social worker may be available to help you help with non-medical challenges such as navigating the health care system and accessing support resources (financial assistance, home care, etc.)

This page may be helpful too: support.cbcf.org/get-support/national-regional-resources

So good to see everyone helping each other on our BC/BC thread! As Ossa and Wrenn and others know, it has always been helpful for us. I hosted 3 brunches in Vancouver but missed last year due to our move to Victoria. If I can "borrow" a house from friends in Vancouver this spring I will host another~~they were so good for all of us to make contacts.

Marian

At the bottom of my posts, there is a link for my blog. Not promoting it at all but I find writing from the very start has been good~~I look back and see how far I have come. I almost used progressed but sometimes normal words can be poor choices

I am a forever on treatments but no worries~~I am loving and living life