Canadians in British Columbia
Comments
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Cathy67, Happy Birthday and I am so sad you're here. I was diagnosed at 53 (in 2017). It feels like a lifetime ago.
M. E. good luck with these pain treatments. I don't know much about phenol other than I had the pharmacist blend me up a special bottle of camphorated phenol and it's some potent stuff! Can't imagine injecting it into a body. Hugs to you.
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Sorry, not phenol today, anesthetic. Apparently phenol is hard to inject as very thick, like molasses. Alternative is alcohol which has more possibility of unwanted S/E. Today's procedure was positive so probably phenol soon. Floppy arm for sure.
Marian
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Hey guys, since covid is wrecking all our plans & the immunocompromised among us should definitely not be going to restaurants -
does anyone want to try to do a Google Meets get together this month?
Zoom is only 40 min for free accounts but I think Google meets allows longer time & I could try to figure something out. Or if someone has experience with this, pls chime in. I've only participated in video chats that others organized and I just linked into them but this stuff can't be that hard.
m
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Hi moth,
Thanks for the idea, yes, I would love to join if I am available then.
Hope everybody is doing well during this tough time.
Catherine
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I would love to be involved!
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My son's wedding took place on Halloween as Covid allowed. Copy/past which I know you will not mind.
As for me, I am awaiting ultrasound results from 10 days or so ago. My voice turned hoarse several weeks ago and I mentioned it at chemo nearly 3 weeks ago and my MO was quick to order the US but no so fast at getting results to me. My thyroid left lobe lit up in the PET/CT in September along with other progressions. She is calling me tomorrow pre-chemo so I will find out more then. The wedding came together and with Dr. Henry's latest edict we were good. Nine of us in total and it was really fun. I was in charge of the photographer amongst other things and in the end we had a miscommunication about a photo shoot at Ross Bay cemetery and she thought we were doing the ceremony first but nevertheless it was always 3:30 to 5:30. I was the only one stressed and we were only about half an hour late for the ceremony at our house. That extended it further though when the bride's son Parker went trick-or-treating longer than he was supposed to. To be honest the light was way better the way it turned out anyway and all of those waiting for zoom to start up were very patient. I was so proud of my son Andy and his bride Kara. Both of her parents have died and there was some sadness around that but our family rallied around including our son Steven and partner Heidi who are in Australia. Saturday was a beautiful afternoon and evening and the wedding took place on our deck overlooking the ocean. I just tried to add a couple of photos but the Internet is not cooperating so I will add them later. It was a very special event for me and as Andy wiped away Kara's tears during the ceremony, I had my own tears too.
XXOO Marian
I managed to get one on here!
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Hi Marian,
Always love to hear your story. Pray for your appointment with MO, even today, I was thinking how wonderful when there is no appointment on calendar. Long long time ago, when I was a young girl, I never worried about appointments, and I did not have even one, but when I realized how precious it is, it is already gone.
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I would join a zoom type get together. Thanks moth for suggesting it.
Marian, your son’s wedding looks lovely. And you look terrific....considering the burdens that you carry! What a great theme for a fall wedding. I’m sorry to hear you are living in limbo land again/still....waiting waiting for news. Holding you in a warm hug as this week unfolds.
An
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Hi All,
I don't get over to Vancouver very often so have not chimed in on other gatherings but a Zoom call would be fun, depending on timing (still working).
Pat
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Hi friends! I haven't forgotten about this & am still planning to get this online meetup organized but I need to sort out my schedule first & it's a mess! I'm leaving one clinical trial & joining another .... and suddenly I have tons of extra appointments and tests and they keep moving things, and once they move one, then everything else shifts. My calendar is just layers of whiteout right now as I keep correcting things. So once I get through this flurry of stuff, I should have a better sense of when I'm actually free. I'd be super bummed to pick a date and not be able to attend myself
hugs everyone
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Moth I totally get it. Every once in awhile I get a day off, likectoday when my only event is a community online event~~Trees of Victoria. It is from 12-1 and considered a lunchtime event. This is my week off in my chemo cycle.
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moth: a Zoom get together would be nice. I am a total techno-cretin so I cannot be of much help. I do Skype with my American friend. I miss taking the Amtrak down to Seattle. It is a visually beautiful trip when you do it while it is still light in the evening. I hope your schedule gets settled soon. Crazy times!!
Sadie: are you working from home? I said it before but I'll say it again --- I am so glad to be retired. Working is one concern removed from lists.
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Hi Elderberry,
Yes, I work from home these days (have been since March). Until recently I was still full time. Finally took the plunge and cut my hours to four days per week. I'm still trying to get used to this - it's been a bit complicated by recovery from radiation - but am sure I will get in the swing of things!
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Hi moth,
As far as I have time, I will definitely join ZOOM. I just learned that you got a blog, will read those gradually, yeah, like you, I tried to arrange something for me during treatment break. I will have mammography next month, nervous again.
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Hello, my quiet BC girls! How is everyone???
I'm itching to get this darned vaccine because without it I have to keep self-quarantining. So annoyed at having to keep on waiting!
I think BCO might be able to give us a zoom call in number - are we still interested in that? Maybe a lunchtime thing on a Saturday? March 27th or maybe the next weekend (the long holiday) April 3?
oh & cancer news - Perjeta got approval in Canada for neo-adjuvant use for HER2+ (previously approved for metastatic bc but not early stage).
hugs everyone
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Hi moth,
I am reading your blog, thanks for the sharing! I like the picture that finds the beauty in everyday life, yeah, I am also eager to get vaccination, but sounds we cancer patients don't have any higher priority. I shall have the same timeslot as you, moth, I want to travel! My next checkup will be coming June, so many appointments, and during break, have to stay home.
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Hi Moth,
Thanks for pointing me to this thread. I too am not-so-patiently waiting to get the vaccine. My 92 y/o MIL just got her’s yesterday. Hopefully I’ll be able to get it before camping season so I can rest a little easier. Giving up camping is not an option! I want to head east and visit the maritimes but it looks like I’ll have to delay that to 2022. I’ve just started realizing that I can still make plans for the future so that’s my plan ... the maritimes!
It’s interesting how different MBC seems to be treated in the US vs Canada. We seem much more regimented but I guess that’s the Canadian way ... follow the rules, no deviations.
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Hi All, I too am getting impatient for this darn vaccine. I'm tired of being in jail but with my lung I know I would be in trouble if I managed to get the virus. I took my 90 year old mother for her shot on Tuesday but at 58 I'm not old enough to be considered in the "caregiver" group even though we live together. Moth/ilowen we may be at the front of the queue when they do get to the clinically vulnerable. Who knew that being on an immunosuppressive treatment would be an advantage!
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Will they categorize "clinically vulnerable"? I am 53 years old, but hope for pfizer shot. When I did flu shot last fall, I got it after showing my cancer patient info, the pharmacy said they have very limited storage for someone walk in like me.
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Hi Cathy,
You may not be considered clinically vulnerable as it doesn’t appear you are in active treatment. If that’s the case you will be within your age cohort. It appears, regardless, that Pfizer is most likely unless you are among the frontline workers who they plan to address through on site clinics (I.e food processing, education). Those will be getting Astra Zeneca as it’s easier to handle.
Interesting timing for this discussion. Just watching a provincial presentation now providing an updated timeline for vaccinations. Looks like we are moving up! Yeah! Clinically vulnerable will receive a letter from the province indicating we are able to get vaccinated and it also sound like vaccinations will go through the Cancer Agency for those who fit the criteria.
I feel like I am close to getting my “Get out of Jail Free” card....
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“Get out of jail free card” ... love it!!
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Hi all;
Moth - been reading your blog. You are rocking the no wig lewk - you have a perfectly shaped head
I'd like to plug back into to community, I'll keep checking for updates on a zoom call.
I'm off Tamoxifen - with mixed feelings. I couldn't tolerate it. My mental health was suffering too much. I hope after a year of no periods (halfway there!) I can try an AI.
*Hugs to all*
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I’m sorry to let you know that Marian Leighton aka marianelizabeth passed away earlier this week. Her daughter posted the following on FB today.
My mother Marian passed away Tuesday night at home, in a house that she loved for its views of the ocean and the many birds that live among the garry oaks and bushes of the garden.
I know she has a huge network, multiple networks, which are a testament to how she lived. She was keenly interested in other people, open-minded, and diligent about the follow up. Once she directed me to the coast of the Black Sea to meet up with a Romanian sailor, whom she had met years earlier, by wandering into a naval ship.
In place of sentimentality, she had enthusiasm, for travel, her chickens, rhododendrons, the Himalayas, her gardens, social justice. I remember one day in the last few months walking into her room and her asking, in exasperation, "What is wrong with white people?" She followed American and Canadian politics closely. After getting palliative radiation in January, while still drowsy in the hospital with brain swelling, she shouted "YES!" when I mentioned news about a U.S. senate seat flipping. She protested the Kinder Morgan pipeline and the Site C dam, donated to the Pull Together First Nations legal fund, and had planned to go to jail in resistance.
In spite of a lack of early family support and a lot of gendered bullshit, she discerned and achieved heartfelt dreams. She also became a blog writer and a meditator in response to the cancer journey, developments that she valued deeply.
My mom got the news that cancer had spread to her brain the same day I finished my teaching program in mid-December. "Let the good times roll" was our toast and motto from that night forward, as we sought to enjoy sunsets, games, and happy hours, as well as, somewhat bizarrely, powering through all 17 seasons of Grey's Anatomy. "10 blade" may have been our last inside joke.
The pandemic in some ways has made it easier to curl up into this time. I do find it a challenge to communicate outside of the bubble. I likely won't be in touch quickly. That said, please do feel welcome to share your memories and reflections about Marian. You who knew her were very much part of her story. And I will enjoy reading your words. ❤️
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RIP, Marine. Thanks for your kindness here when I joined this group more than one year ago, I always read your blog, yes, I know what you said in your last post, you said, you spent a wonderful day and you enjoyed time together with friends, and I always pray you have a smooth journey.
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Thank you for letting us know Pots. I have bern worrying about Marian a lot lately and went searching for news two days ago. May you rest well Marian. You left your mark on this world in countless ways.
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Oh Pots, I was very sad to read this. M.E. was a trooper and bright spirit. Thank you for letting us know.
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Hi everyone. This past month has been so crazy and surreal. I live in Maple Ridge. 39 years old single mom of a 12 year old daughter. I noticed my right breast looked very different while getting into the shower at the beginning of the month. It also felt as if the upper outter right quadrant was a massive lump. I found out that I am not able to book my own screening due to not being 40, so I decided to go to a walk in clinic (in hind sight should have gone to my family doctor). She performed a manual exam of both breasts and agreed that I needed a scan. The clinic called me the next business day to say my mammogram and ultrasound were April 15. I told them that seems much too far away almost 6 weeks at that time) and asked them to look around at other imaging places. After much argument, they called back with an appointment date which was just a few days away. The mammogram was my first, so I didn't know what to expect. I had an ultrasound right afterwards. They took so many images I felt like I was there forever. I knew it wasn't good when the technician told me she was going to get the doctor. The doctor took a look herself and told me I needed a biopsy. I just started bawling and this is where my anxiety went into overdrive (and hasn't subsided since). Another wait of a week and a half, the walk in clinic calls again to tell me my biopsy appointments ((2??) We're scheduled for April 14 and May 7. I was really feeling like this wasn't being taken seriously enough. I phoned the breast imaging department at Royal Columbian hospital and the receptionist coldly told me "we are busy. We are booking the urgent appointments in April and other ones into June". I begged to be put on the cancellation list. I also decided then to get my family doctor involved, though he's in Delta and I don't see him often. I spoke with him on the phone, asked him to get the records from the walk in clinic and try to find me an earlier date somewhere else. They put in a requisition at Jim Pattison breast health clinic. The following day, RCH called because there was a cancellation. I was moved to March 25. So I had my ultrasound guided biopsy yesterday and it wasn't pleasant. I was in the room for an hour and a half. I found out that I have another mass next to the one I can feel (she said it's hard to measure the large one due to my breast tissue, but it's between 3.5 and 5cm...Ugh). They also mentioned a third mass, but weren't totally sure if it is just breast tissue (in another quadrant). They biopsied the two in the same quadrant (4 samples of each) as well as one lymph node in my armpit that's been swollen. I was most concerned about the lymph node and this really scared me. Once the radiologist left the room, I started crying uncontrollably and the attending nurse (technician) told me that the lymph node doesn't look bad. It's just slightly thickened in the outside, but looks normal on the inside. So...we wait for results. Saying I'm terrified is an understatement, as I'm sure many can relate. My family doctor's office called today to tell me they already have an appointment for me at the Jim Pattison breast health clinic for April 9. After doing some reading, it sounds like their team is great. I obviously don't know yet what my next steps will be, but wondering if anyone here has had experience with the Jim Pattison breast health clinic? Any reason why I should or should not go somewhere else?
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Hi, I just received vaccine shot invitation, and I plan to go, just want to conf it is pfizer.
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Envy you having a shot of any kind as my clock is ticking louder these days.. No letter for me yet. I read they are prioritizing Fraser Health given case counts although that was not stated in relation to the clinically vulnerable. Sigh....
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Sara, I can’t provide any advice regarding JP’s clinic but would recommend you give them a chance given you have had such a run around. I can certainly understand how you are feeling. I was initially diagnosed at 38. While my GP was amazing, getting me in for a core biopsy immediately (and BTW, I likened it to being harpooned - not precisely pleasant) they lost my results and so I waited, and waited. Then I was scheduled for surgery in the middle of a nurse’s strike. Up to the morning of my surgical date it was unclear if I would actually have the surgery. While the experts say breast cancer rarely moves that fast, our gut instinct is get it out, now!
Hope you get speedy answers. Sending a virtual hug.
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