Canadians in British Columbia

Moth I sent you a PM. Please know how much I am caring ag hoping for best treating.

Thanks so much Bluesky. that is very kind. I am doing ok but and moved by how people are really being friendly and seeming to feel like "we are all in this together". I had an appt booked for 2 months away and got a call today that the doctor will call me on Monday to have a phone consult because he is cancelling all office visits. I assume he doesn't expect things to be different in 2 months. My NP is available for phone appointments as well and it was good to hear that pharmacists can renew prescriptions on their own without input from physician/NP.

In case some here aren't aware Shopper's Drug Mart is also offering consults using your MSP and will deliver free. They and some grocery stores are only allowing seniors or those with special needs in the store when first opening. I am 73 with diabetes, heart disease and small airway disease so although I don't worry about the virus I don't want to need medical care when there are so many other serious needs.

Take care everyone and thank you so much bluesky. xoxo

Thank you Marian. I am not in treatment and actually am feeling less alone because I am agoraphobic and now the entire planet is. :-)

I do know many people from Callanish who are in active treatment and I can't imagine how scary it is to go into the Cancer Agency or hospitals. My friend gets her treatment from Lions Gate. It is such a struggle.

Callanish is going to do their meditation on Zoom so I am grateful to not be missing out on that. I have been going there every Monday for almost 5 years. Luckily it is only across the street for me but knowing they will do it online is such a blessing. Take care everybody.

hi everyone, I hope you are all keeping well! I talked to my MO last week and she said right now they are not booking any non essential ct scans. I usually get my scan every 3 months to check if my treatment is still working. I’m currently on 3rd line in a year so these scans are quite important to me as it can fail without any symptoms. Has anyone heard that they are stopping scans? Are you all still getting scheduled for scans? Thanks and take care ❤️❤️

It has been so long since anyone is written here and surely it can't only be Covid? But maybe it is and with our cancer struggles we find it hard to write. I miss all of you and your sharing here. Briefly, my life has changed a lot in the last several weeks. My pain went sideways again and I spent two weeks in hospice from the end of April. I doubt that we will ever discover what causes my neuropathic pain to increase out of the blue but it did and after an MRI and a CT scan we were no further ahead. I am now home almost on bed rest with medications changed, ever stronger but without drugs it would be impossible. I left hospice with the expectation of the probability of living a sedentary life. There are some days that I can be up for a couple of hours but even that requires sitting down from time to time. Today I have only been up a couple of times for a few minutes. It all sucks but an alternative does not exist other than giving up completely. I am not ready to do that and will continue to hope that things will change. The crazy part is that my MRI on March 31 showed no progression. Great news in a way and it is hard to believe that pain has interfered with such intensity that I cannot even appreciate that news.

Moth, I hope your news is more positive now that you are on the trial. Mk118, I hope you got your scan rescheduled and Cathy that your scheduled appointment went ahead. Wrenn, I know about your agoraphobia but am glad that your Callenish meditations continue on zoom.

hugs to all of you, Marian

Hi runor,

It sounds we two have similar diagnosis, but I got one positive node which is very bad. I wonder if you shall be in stage 1 category based on your diagnosis. Anyway, lets enjoy every day. My oncologist ordered routine for me, shall be next month, but don't know due to covid 19. Personally, I think CDC should not postpone so many medical activities, we've heard lots of tragedy due to this.

Marian, I am so sorry you are stuck with so much pain and having to live a sedentary life. What is interesting to me (but not surprising) is how vibrant you still are. Your mind is so clear and engaged even if it is only a few hours a day. You are still so much in life so I hope you can adapt to slowing down (physically) after such an adventurous interesting life and I hope that something comes up for you to ease your pain so that you can be more active. Either way I am grateful that you are here and assume you will be for a long time. :-)

I prefer Callanish meditation in person and although I tremble all the way over there (60 second walk) I immediately relax when I enter, the Zoom has made it possible for people from around the province or even in town who can't make it to the centre to join. I love how Calanish takes care of stage 4 people. Such a comfort. Janie has written a book that someone here might like. It is called Radical Acts of Love by Janie Brown. I got a hard copy but also got the audio so I could hear her read it. If you don't belong to audible you can get it free for joining for a month. Cancel before the month is up to not be charged for membership.

I also do a Zoom writing group with Callanish and this week the theme was 'Worry as an Obstacle to Equanimity'. It made me realize that my worries/stress lately were really just about the pandemic and cabin fever (weird for a recluse) and I am not going to pathologize it further than that. I tend to always be looking for danger. The last few days I just feel lucky to not be black.

Again. talked too much. My ex once asked if I had ever had an unexpressed thought. nope

Take care everyone. Hugs Marian.

Hello ladies. I've been recently diagnosed (triple positive, starting chemo this week). I just wanted to reach out and say hi as I am also in Victoria.

Thanks runor Looks like a really nice bunch of people here. I'm glad I found this place.

Hi ladies,

Richmond hospital just called me, I will have my mammogram checkup on June 26, this is my first checkup after treatment. I pray this will be my six months b-day.

I finished radiation six months ago, right now, my breast surgery area is still stiff. Everything is okay if no touch, but if touch will painful. For example, if I run, though I wear a sports bar, I can feel that as breast moves up and down, however it won't bother me. My radiation doctor said, inside radiation side effect appears later than outside. Anyway, I am worried how to do mammogram under this situation, anyone has similar concerns? I don't know if I shall ask for ultrasound directly. But my disease was due to calcificatiion, mammogram should be better than ultrasound.

Any comments will be helpful. Thanks.

Marian, I hope you are still able to check in once in a while if just to read. I have been thinking about you. My son travelled in Nepal and loved it and I think of you still trecking after your diagnosis there and admire your strength. You remind me of his love of life and adventure.

I wish you could still be as active but you definitely deserve a rest. I guess there isn't much getting out there for anyone these days with covid and I hope that helps your frustration at being held back by this effing disease a bit.

Take care.

hi everyone, I'm still here. Took a board break a while ago when I was feeling bad physically and emotionally and just needed to breathe without thinking of cancer but I'm back.

I had overall regresssion on my last scan so this clinical trial is working for me now.

I agree it's been quiet. I don't get it. With covid and so many of us being stuck home I thought it would busy.

I'm in the phase of being angry at covid situation as it seems to mean my chances of travelling while I'm still in condition to do so are diminishing rapidly. I did get some info about travel medical insurance and while most policies won't insure stage 4 pts, the broker thought they would be able to get some sort of policy. So my travel dreaming is no longer limited to Canada

Marian - what's new with you?

Cathy - hope your mammo want ok

Lemons - I hope your treatment is going well

I too have been surprised by the quiet on the boards. I am not on many but have always appreciated the support.

I am really struggling and despite some ups there are more often downs. Being almost sedentary is ridiculous especially since my cognitive ability is good even on crazy high does of opioids. Covid of course is hard for everyone and I do recognize in my case that socialization is not so often. I had a friend come to stay from Vancouver for 2 nights in July while my husband went sailing and we had a good time. It opened her eyes too about my condition. My pain is such that I have tingling and that numb feeling that comes from the anesthetic bipuvicaine (marcaine) that is mixed in the same amount as the opioid sufentanil in my pain pump. It is like the feeling of dental freezing wearing off but mine is many times higher and 24/7. Then there is the neuropathic pain from my scapula to my shoulder and down into my hand that is lessened somewhat by the pain pump meds plus oral methadone and ketamine. I use ketamine intranasal spray for breakthrough 4-7 times in 24 hours. Lying down is the best position and when up it is often only a few minutes before the pain is too much. There has been NEAD for ages so the pain issue sucks. I had a CT of neck, chest, abdomen and pelvis yesterday, routine. I got a call from MO secretary today and am to come in Aug. 18th, a week earlier than planned. I questioned why and that I had a CT yesterday and she said results would be discussed when I see her earlier than original appointment. Who knows but not really worried. In a way it might be a relief if positive as living like this is not how I want to live but am too young and healthy to go down the other alternative now.

moth, glad the clinical trial is working and good to have word from you too. Hard to believe the changes since we met for lunch with the others, Elderberry, Ann and the other 3 in the fall.

Cathy I look forward to hearing more good results from you and I love it that you can run 5 km! I do console myself recalling that I was trekking just over 3 years ago.

Love to you all,

Marian

Marian, I hate it when they call you in earlier to discuss results...ugh. The “not knowing" is crazy making. So on top of managing your pain now you have to manage that too. I wish they could just tell you as soon as they can, like Monday!!!

Moth, congrats on the clinical trial news! Doing a happy dance!

I try not to think too much about who I was and what I did a few years ago compared to now. I officially retired in June after being on LTD for 2 1/2 years, I was asked if I would like to return to work.....nope. I feel like I've moved on now. Do I miss it? I would be lying if I said no. Who I was and who I am now are different.

Be well,

Yes, I hope I can meet you.

Last November, right after my radiation preparation, I felt very tired that I did not join cactus club gatherings, and I was tired the whole radiation month. Already five months, hopefully all these finish soon.