Mar 7, 2020 10:21PM BlueSky1969 wrote:
Not effing fair Moth. I am holding space for you and sending love, **hug**
Canadian health care, clinical trials, and life in general in the north.
Posted on: Dec 19, 2011 06:17AM
I'm wondering how many West Coast Gals we currently have on here. It makes it a little easier to compare notes as our health-care is provincial. Would be nice to share tips and such to each other as we wade though the health-care Bureaucracy.
I'm in Richmond BC (a part of the Vancouver Lower Mainland) and the majority of my treatment has been at Vancouver General Hospital and Vancouver Cancer Agency.. with a few small surgical procedures done at UBC and my original Lumpectomy at Richmond General. My GP is also in Richmond. Ive been on the BCO boards since 2007 with a few breaks.
Please pipe in even if only to let us know your here
Posts 2911 - 2940 (2,964 total)
Mar 7, 2020 10:21PM BlueSky1969 wrote:
Not effing fair Moth. I am holding space for you and sending love, **hug**
Mar 8, 2020 09:53PM marianelizabeth wrote:
Moth I sent you a PM. Please know how much I am caring ag hoping for best treating.
Mar 18, 2020 04:05PM BlueSky1969 wrote:
If anyone needs help w groceries, pharmacy runs, dr office trips, treatment appts, please msg me. I'm healthy (ish) and happy to adopt any protocol that makes you comfortable.
I'm available-please reach out! Happy to help.
Mar 18, 2020 07:14PM wrenn wrote:
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
Mar 26, 2020 10:41PM marianelizabeth wrote:
I have always been a communicator and I hope that now more than ever that we can share with each other. Some of you are on active treatment, some having to travel distances for treatment, some waiting for appointments or phone calls from doctors. Please share especially if you want to connect here or by email or even telephone. We can also share ideas on how we are getting things done. Love to you all, Marian
Mar 27, 2020 11:51AM wrenn wrote:
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.
Mar 28, 2020 12:04PM cathy67 wrote:
I have routine appointment next month, it is for injection and refills, will be the end of April.
Thanks God my radiation was scheduled last December, at the time I was worried about the skytrain strike, the time I felt the whole world crashed. I never thought the other patients will experience much harsh situations in a few months. God bless every body!
Apr 8, 2020 12:03AM Mk1118 wrote:
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 ❤️❤️
Apr 8, 2020 01:04AM moth wrote:
i haven't heard about my scans being cancelled but I'm in a trial and scans are part of the trial protocol.
I would say yours is an *essential* scan. I'd start calling around and ask to see if this is written policy for stage 4 pts.
"If patients have concerns at any time throughout their care journey, they should speak with their oncologist. Should their concerns remain, we support them in contacting the Provincial Health Services Authority (PHSA) Patient Care Quality Office, where they can speak to someone about their individual experience. Contact information can be found on PHSA and BC Cancer's websites."
under "where should i go if i'm having concerns...."
May 28, 2020 02:46PM marianelizabeth wrote:
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
May 28, 2020 05:36PM runor wrote:
MarianE, good to hear from you. It is not good though that you are in such a miserable spot. Pain is an ugly thing. Being unable to do what we want in a day is also miserable. I hope that as mysteriously as your pain spiked, it goes away again. I have my fingers crossed.
This covid thing..unlike most people who think our govts are making safe and concerned decisions I hold the exact opposite view and cannot contain my disgust and rage over the blind and wanton wreckage that has been unleashed by people who, I hope, are charged and tried as war criminals. Aside from my blood pressure being higher than normal as I listen to the CBC and want to hurl my radio against a wall, my life is pretty much the same as it always has been. It occurs to me that I live in lock down all the time!
My presence on BCO is less all the time. It took years to not get out of bed and not have cancer as my first thought when my eyes opened. That messed my life up, seriously, for a long time. Fear and a crippling grief were the flavour of the day for the past two years. Now I go long stretches when I don't think about cancer - until I do - and it stops me like a concrete wall. I read and follow the journeys of metastatic patients and wonder when I will join the ranks. The times I do drop in on BCO keep me grounded in reality lest I forget too completely that I have been given the memo and I need to pay attention. Making long term plans is still something I find impossible to do. I wonder if I will live to be 60. I have these thoughts often, but not AS often as before, so, that's something, I guess. So because I still have one foot in cancer world (which is a lot less fun that Disney World, believe me!) I swing by to touch base with my few fave threads and read up on the peeps I've come to know and names I recognize. Like yours. Stay well and I hope for better days ahead for you!
May 28, 2020 05:48PM cathy67 wrote:
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.
May 28, 2020 05:53PM cathy67 wrote:
Thank you always be here, thanks for your warm message. I've read some of your stories, wonderful life before cancer's coming. I finished my treatment and my checkup this January, doctor said nothing till six months later, then I scheduled a trip to Europe, with my daughter during March break. Of course, it was cancelled. Now I must face another round of checkups, if I got clear, then I can go ahead arrange my time before next checkup.
May 28, 2020 07:24PM wrenn wrote:
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.
Jun 8, 2020 01:02AM marianelizabeth wrote:
wrenn, both times I have laughed out loud on "My ex once asked if I had ever had an unexpressed thought. nope" I may have been accused of something similar once or twice. But here ou certainly did not talk too much and I am so glad to hear your comments and thoughts. I also appreciate your thoughts for for me. Considering the drugs I am on, even I amazed that I can get clear thoughts out. My last weeks have been up and down like a roller coaster. I now have a counsellor from hospice and I first met her two years ago the first time I was in hospice so it has been easier having someone who knows something about me. We have two phone meetings so far and having an objective ear has been helpful already.
I am going to delve into Callenish. It is not like I do not have the time and you have spoken so encouragingly about it.
Jun 9, 2020 11:15PM runor wrote:
Lemons, welcome and sorry you find yourself here. You will find much support here. Any questions or concerns that come up, someone has been there, done that.
Jun 10, 2020 04:06PM cathy67 wrote:
Sorry that you have to be here, but welcome. This site has lots of information and wonderful connections, and it is well organized. Hope you have a smooth chemo journey!
Jun 10, 2020 04:14PM cathy67 wrote:
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.
Jun 25, 2020 08:49PM akmom wrote:
I have two of these binders with the Velcro closing (from BMX in 2018 and recent scar repair surgery). Does anyone have surgery coming up, or know someone who does, who could use one or both? It was sure nice this time to have the clean one to change into when the one I was sent home i got soiled. I am in south Surrey, could deliver if locally or mail to anyone who needs them. Free of charge of course xx
Jul 27, 2020 12:37PM - edited Jul 28, 2020 11:38PM by wrenn
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.
Jul 28, 2020 10:16PM marianelizabeth wrote:
Wrenn, thanks for your note and I see it as encouragement too. How are you? Any changes to report? I love it that your son travelled in Nepal too. It is much clearer now with so much less pollution though life is even harder for the majority.
Cathy, did your checkup go well? Lemons, Covid seems to have made BCO quieter which saddens me for this of us who appreciate support and connections.
XXOO to everyone,
Jul 29, 2020 10:43AM moth wrote:
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
Jul 31, 2020 02:04AM cathy67 wrote:
Hi Marian and Moth,
I am still here, thanks for your message. Yeah, my mammograph back as clear, the next checkup will be December. I want to travel, however this situation damages my plan. I had to cancel my spring travel plan to Europe, let alone the money loss. Treatment and checkup breaks are so precious for us, we don't know what the next checkup will be! I have a teen girl, entering grade 11, will be busy year for her, no way to travel before December, and it is still no way to travel the rest of the summer.
Lets pray and support each other when someone's routine is coming. Moth, it is great the trial works for you! My MO prescribed me another year of lupron injection for safety. I did lots of exercise during lockdown, now I can run 5km continuously, I never known I can do this.
Aug 7, 2020 08:14PM marianelizabeth wrote:
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,
Aug 7, 2020 11:39PM cathy67 wrote:
Glad to meet you here again! I've read through your story, and our surgery dates were so close. I hope I can experience as much as possible in the coming years, hopefully lockdown can be lifted soon. I hope I can travel a few weeks with my daughter again.
I will pray for you!
Aug 8, 2020 06:11PM Pots wrote:
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.
Aug 10, 2020 10:06PM DearLife wrote:
Marian I am sorry you are having so much pain. I pray you can find relief.
Moth I am cheering for your trial results!
Pots, retirement is freedom. A new chapter for you.
Cathy I hope to meet you one day. Maybe we can have another Vancouver lunch when this pandemic finally ends.
Cause you gotta have friends 🎶.
Aug 11, 2020 11:54AM cathy67 wrote:
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.