Canadians in British Columbia
Comments
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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."http://www.bccancer.bc.ca/about/news-stories/news/2020/covid-19-and-cancer-treatments
under "where should i go if i'm having concerns...."
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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
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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!
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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.
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Hi Maria,
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.
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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.
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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.
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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.
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Thanks runor
Looks like a really nice bunch of people here. I'm glad I found this place.0 -
Lemon,
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!
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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.
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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 xxDale
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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,
Marian
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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
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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.
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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
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Hi Marian,
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!
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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,
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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 🎶.
❤️
Pearl0 -
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.
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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
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Like Elderberry I have been away from the forum more and more. I do drop in to read. I was happy to see Marian Elizabeth post. Not happy to hear about the struggles with pain.
Life rolls along here and I am happy to not think about cancer every second of the day. But even then it's never far from my mind. I set it aside to water tomatoes, fold laundry and feed chickens. You know...life.
Dead Dog Cafe! Now there's a reference that takes me back! Yes. I shall wait for the sign! Take care, everyone.0 -
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
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moth: I can barely imagine what you are feeling about your schooling. If you were still in school there would be the anxiety of returning to class. Not going -- the loss of giving up on a dream. My sister and I did a 2 week trip on a Britrail pass in 1992. It was great fun, we did Scotland and Wales as well. The Lake District is lovely and Chester just begs to have photos taken. I hope you get to make the trip to Disneyland and Europe in a post-pandemic world. I hope they find the treatment continues to show positive signs. Keep us posted for the results of the 31st
Best wishes to all!
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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.
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It has been great to see so many people back on our British Columbia thread. I would love to respond to each of you but I am just too tired. Thanks for remembering my CT. The results yesterday surprised me even though I had a head's up Friday from my BCCA pain doctor. More progressive metastatic disease than expected and I was shocked really. My MO thought the report was badly written as did I but she has ordered a PET/CT to be done in the next 2-3 weeks and chemo Eribulin will probably start next week. "Never say never" with my decision once again to start chemo was a decision made once we discussed the different circumstances from November to now. Then I did not want to add one more thing to my broken body and my brutal pain was nothing like it is now. One of the tumours in my chest wall that we can feel is "not open yet" a quote from my MO. YUCK. The other mass is in an odd area in my upper medial chest and we look forward to finding out more from the PET scan. Again I was surprised that I did not feel the lump myself but but with all that centres around my pain my MO said that she herself was not surprised. There may be a few tiny nodules in the upper lobe of my right lung that are growing too. Weirdly though I am emotionally wrung out I feel strengthened knowing more endurance is needed.
Over the past few weeks I have got a couple of pars of pullets (young female chickens) and for those who remember, keeping hens for 4 years in Vancouver during cancerland was a blessing for me to care for and enjoy. My deck garden with the majority of plants grown by seed has also been a positive. I am still lying down most of the time and manage what is needed very carefully. Still, life is a roller coaster and I can go to anger to sadness and back in nano seconds.
More later and love to you all,
Marian
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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
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MarianElizabeth, I am sorry to hear of even more challenges for you to deal with. It sounds like you have a great team around you who are responsive and on the ball. That goes a long way when you don't have the energy to fight for yourself every step of the way.
Pots, thank god for stable! I am jealous of your garden! My garden is always a challenge because we live in a forest and it is spread all over the place on what small areas of level (ish) ground I can find, always under trees that provide shade and steal moisture. Right now the squirrels are in cone gathering mode and are in the trees hurling cones to the ground They are hitting my tomato plants and knocking all the green tomatoes off. I am not amused. Squirrels decided that the 5 gallon water bucket I had would make a dandy cone storage spot and filled it to the brim! They've gone berserk those damn squirrels!
Moth, fingers also crossed for upcoming scans.
Take care all!
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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.
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MarianElizabeth,
I will pray for you!
Today is my 53rd birthday, I back here to meet my special friends. During my toughest year, this group gave me warmth. I pray for every woman in the group, we all are heroes. Mariah Carey's "HERO" is one of my favorite songs, there's a hero if you look inside your heart!
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