Canadians in British Columbia

Hi: Pots, Mariane, Pearl, Cathy67. Welcome, Lemon!! I have been totally off the boards for awhile. No posting, not even just reading. I also expected more posts.

It is a weird time for us. I was hoping to go to Glastonbury either this month for my 70th birthday, or perhaps in September when it is less busy when kids go back to school. Some meditations at the Well, a walk up the Tor and lie on the grass and look at the sky. Of course, breakfast at my B&B and great pub food and music in the evenings. It sucks. I cannot even have my annual sleep-over with my surviving older sisters. My eldest sister died one week after our sleepover last September. Feeling a little sorry for myself. I should be ashamed when other people are really suffering. But I have to ask, will I still here next August/September, or be fit enough to travel?

Marian, you are an amazing woman. Under such pain and drugs you are as clear and concise of mind as anyone could be. I will watch for your post following your August 18th meeting.

Pots: I retired in 2016. I really loved working with the clients and nurses at The Travel Clinic but I have never had so much as a second thought about taking retirement when I did. Really glad not to be worrying about having MBC and working amid a pandemic. The clinic had to shut down. So where would I have been? Employment Insurance and wondering if the clinic would open before the insurance ran out. How doth thy garden grow? I am starting to freeze my green beans. A huge haul everyday. I will be sad when fall comes around and I won't have sun warmed tomatoes every day

Moth: I am glad the trial seems to be working. I was given the name of a travel insurance company whose whole job is to ensure the hard to insure. I can't remember their name. I used them back in February to go to the States. It wasn't all that expensive either. I'll see if I can find any old e-mails or papers and get back to you so when the time comes you can go ahead.

Should I be glad that MBC ended the consideration of radiation? My MO is trying to get me my PET scan. It was due this month but they are seriously cutting back on who gets one. There is so much sanitation/disinfecting etc between patients. I might get a CT instead but Dr S really wants a PET. I want to know where I stand now. Planning was hard before, it is a nightmare now. And I want to know where I stand?

Have any of you been to Glastonbury? I would stay so far away from the place when they have that big music festival. The thought of such a small, tranquil place being full of throngs of people, packed together and loud music was a put off before the pandemic, which cancelled it.

These are not my photos but they do a nice job of showing the Well and the Tor. I have been twice - once way back in 1990 with my husband, then with my American friend in 2012. The B&B at the foot of the Tor that Bob and I stayed at is still there and I was ready to book. When Lynn and I were there at the top to the Tor a WWII Hurricane buzzed us a couple of times, the pilot waving. I would have preferred a Spitfire Ha ha. But it was pretty cool.

I think the town must be a ley line. The very ground has a vibration that feels magical.

Blessings to everyone. Instead of Dr Henry's motto I will use the one from the radio show "Dead Dog Cafe"

Be brave

Stay Clam

Wait for the sign

Pots, I read you were doing scans in August. How are you ? Hope piqray is still going well for you.

Marian - I'm sorry to hear of the pain. Sounds like your team is doing what they can but it's just not enough - i wish we had a magic wand to make the pain go away. I'm glad you had some visits with friends.

Elderberry - I've only ever heard of Glastonbury in context of the festival. It looks magical. I hope we can travel again soon. I want to go to Disneyland. And if I'm stronger, I'd go back to Europe. Maybe a river cruise. I'd like to see Venice again. I've only been to England once so that would be nice too - maybe take some train trips through the UK.

I'm well, still not at baseline for energy or activity level but improving steadily. My clinical trial is in upheaval - partly on hold as a different trial reported out that taxol + atezolizumab had no benefit over taxol alone. A previous trial of abraxane+ atezo did show a quite large benefit. Nobody knows if the taxanes are just more different from each other than they thought or if the trials are faulty. I have scans on the 31st but all signs so far are that my treatment is continuing to work for me so we're staying on. But it's all complicated because atezo is approved but not funded so we're still at Roche's mercy. Right now it looks like they'll keep parts of the trial running so I can keep getting the atezolizumab from them.

The back to school ads are like a knife - I'm grieving giving up my nursing degree. I need to switch gears to my other goals - I had plenty so it shouldn't be difficult but nursing was really a passion project for me and I'm still mad at stupid cancer for screwing it up.

Hugs for everyone .

Moth, pray for your 31st scan. My friend's husband was diagnosed lung cancer IIIB six years ago, he visits cancer clinic every month and has scans every six months since then, and he is doing great on the trials Hopefully cancer is just a chronic disease that we only need routine treatment.

I back to gym last week, hopefully pandemic can be over soon. I plan to do short trip myself and do longer trip with my daughter when she has school breaks.

I had a plan to work again after my daughter grows up, but I had to change it since my diagnosis. We can not control life ourselves, but we can make every day wonderful.

Hi ladies,

I’m happy to report that my CT scan says tumours are stable. I’m on cycle 13 now. My TM are bouncing around a bit which is worrying however MO says that is not uncommon on Alpelisib. Still is crazy making for me....I live my life in 3 month stretches these days. SE are ok, latest is the addition of the second Metformin that has upset my digestive system so the mornings are spent close to the bathroom. Sigh.

Life otherwise is good. My daughter/son rented a house at Skaha Lake in Penticton and the whole family spent a week in early August together....beach, babies, wine and sun. I felt like I was living in a dream, it was so wonderful. I am so missing being able to go see my son in Ottawa and my brother in PEI. Some days it feels like my “good calm” time is slipping away the longer I’m on this drug. Sigh.

My COVID garden is stunning and I’m really happy with how it turned out. The dry gulches frame the various Ed’s and my flower seeded assortments have gone crazy. My giant marigolds are 5 ft tall, same with the cosmos. We’re also still living in Reno hell....hopefully the flooring and tile work gets installed next week. I’m so done with the noise, the mess and cramped living out of boxes.

Moth I’m relieved that your trial drugs are working. It’s hard reconciling who you were with what is happening now. Sending you warm hugs.

Elderberry, your trip to UK sounded lovely. What a great memory! It is daunting to see the COVID numbers go up and know that you don’t dare spend time with your sisters. Sounds like your garden is your solace too.

Marian, I'm glad that you have a treatment plan is place. It’s still a gut punch to know you have a progression after a long time NEAD. I bet those young chickens help keep you focused on here and now!

Runor, please please try to live your life without the constant shadow.....I think we all experience a sadness that the naivety we once had is gone. Thankfully living life help keeps us focused...I’m learning to make plum jam from the yellow Pershore plum tree in our back garden. They are bitter not all that nice a plum until they get cooked and then they have a marvellous burst of flavour...almost like an apricot.

Bewell

Ann

Runor I had to laugh at the image of squirrels filling a 5 gallon water bucket with cones. I'm having a hard time visualizing your forest living. I would love a picture of how your house is situated and where the squirrels are throwing cones from.

Wednesday is my second Eribulin treatment and so far I don't think I feel any side effects except maybe a little more fatigue. Tomorrow at 0800 I am having what is called a supraclavicular or infraclavicular phenol neurolysis. This will be ultrasound guided and with an anaesthetic. It is a trial with anaesthetic to see if it decreases or stops the pain for a short time. The next step at some point would be to inject phenol which would leave me with a floppy arm so it's not something I will be taking lightly or making a decision soon.

Moth I see you here and there on other threads that I am either considering or just checking them out. I keep hoping that the trail you are on continues to work. Ann I would appreciate a photo or two of your garden.

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. 

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

I would love to be involved!

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.

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

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.

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!

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

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.

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.