Canadians in British Columbia
Comments
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Just waving hello to everyone! I've got 3 more weekly taxols to go & then radiation. Supposed to be starting school in September and now I'm getting cold feet ....
Also, I'm starting to get neuropathy so it's not just cold feet but sore feet (ha, couldn't resist the lame joke; oh look, lame...another joke LOL)
My blood counts are still on barely above what they need to be. I hope I can make it to the end of the set with my bone marrow intact & some feeling in my hands and feet. I'm feeling a bit tired and I don't know - kind of bored of all of this, kwim? I hate having everything be about my health & cancer & being well & staying well. Ugh, b.o.r.i.n.g.
Other than me being a grump, all is well here. Hugs everyone.0 -
Thinking of you Moth. I’m sorry you are having pain. I know what you mean about being weary of the cancer channel 🙄. Hang in there and it will be over soon.
Gentle healing hugs! ❤️
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I feel like it is been ages since I've written and sorry to not have jumped in where I could've. I love it that this thread is so active these days and there's so much help being offered. The discussions about changing doctors has been interesting and I for one agree that sometimes it is important to make a change. Not sure if I mentioned some time ago that I did just that. I changed my pain doctor at BCCA Victoria and it has made such a difference. She works only one day a week at BCCA and her main job is the Victoria hospice at the Jubilee. That hospice has seven acute care palliative beds and 10 beds for those nearing end of life. My pain doctor got me admitted in June and over two weeks I saw a different doctors and also did what is called a methadone conversion. I was switched from all of my Oxy drugs to methadone. Tomorrow I see her again and we will increase the dosage. I also saw up a specialist on nerve blocks and will likely have one in August. Being an inpatient allowed me to have tests done easier as I was readily available when cancellations happened. I had a CT with contrast, a full bone scan and an MRI. The chest CT shows my tumor as being stable in the bone scan has a couple spots nothing major but the tests will be redone in three months. Back to doctors and changes. I think most of you know that I asked to change to a different MO and that also has made a world of difference. I feel like she treats me as a regular breast cancer patient as opposed to one who is Metatastic and thus less important. At least that is how I felt with my old MO.
For those of you who did the virtual reality study I am curious to know how you feel now. I enjoyed some parts of it and did feel that there was a distraction but in the end I do not feel that is helped me with my pain. Perhaps the one thing that came from it is getting back to some form of meditation even for short times. I joined a newly created support group at BCCA for metatastic patients and not just breast-cancer. I think there will be 10 of us and we will meet once a month. With the second month coming up there maybe one or two people who could not come the first meeting but after that there will be no admissions until 4 to 6 months so that we can create bonds and make goals together. I'm really excited for this and found the first meeting to be helpful.
Happy summer to all of you and I look forward to being present on the thread again.
Cheers, Marian
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wrenn - it's not your memory. I've been cagey about telling what I'm doing - partly because saying it makes it seem so frigging real and I'm getting scared, and partly because IRL I've gotten some weird reactions to this plan. So here - I'll tell you guys & then I might delete it because I don't know if I want it out there for posterity.
This plan was hatched before I got sick & has been coming for a long time. I've been accepted to a 36 months continuous program to get a BSN and become a registered nurse. I'm a board certified lactation consultant but I've been mostly a sahm for 20 years & my previous degree is in PoliSci. I wanted to go back to work for 10-15 years in health care, in a unionized setting, in a job which would allow me to travel and which I could also move into health care policy research if I wanted to move from bedside.
This seemed sort of a crazy plan as a healthy 51yo, but now as a recovering bc patient, it seems even more crazy
My alternate was a Master in Public Health but I always felt that was more risky in terms of job opportunities & not guarantee of employment so .. here we are. 0 -
Moth I hope you pursue your dream. Going back to school will be stimulating and rejuvenating. You have many years ahead and it is good to have something to look forward to. Things will look different by September, when most of your treatment is behind you. We need good holistic nurses and you would have so much to offer!
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Go Moth Go! What a smart plan, sounds like a good fit. I'm a sahm as well, and while the thought of jumping into something new would intimidate me it could be such a healthy choice to focus on. I like the Goethe quote about providence moving forward too as one commits. I know it's romantic, but calling out to the universe for assistance can bring me practical focus. I hope contemplating this new direction gives you a lift.
I called the BCCA and spoke with a patient care quality person. After I shared my experience with her she assured me my comments would be brought forward to his advisory board. I'm having an inner debate on whether to write a letter to BC College of Physicians - depends on how busy my week gets I suppose.
I remember when my A cup breasts became D cups after my milk came in - yikes, still hurts thinking about it
So good to hear good news is on it's way Wrenn : )Will start Tamox next week. Not sure what that will bring - wanted to give myself a week to absorb my low (8) Oncotype score. I see my GP on Tues for a new MO referral - I hope it goes easily. I realize I still have a few questions about treatment I didn't get a chance to ask...
Again: I really would've been so lost these last 4 months without you ladies - Thank You!
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wrenn - congratulations on the upcoming grandbaby!!!
Thanks for the supportive words. Most days I'm pretty excited about it. I was in school last year, refreshing my pre-requisites. Got diagnosed in the middle of final exams actually... I think the first thing I blurted out after my GP said, "sorry, you have cancer" was "I'm going to need a note for my professors. I don't think I can write my final tomorrow." I ended up writing some finals between my surgery and the start of chemo.
Since then I've spent 5 months essentially sitting on a couch watching mindless netflix. I've gotten used to being a lady of leisure, having people wait on me hand and foot
September will be a harsh reintroduction to reality. 0 -
My scan on my right (supposed to be healthy) breast today still led to a lot of "Hmmmmm, I don't know" from the radiologist. There's a region of calcification & they want to rule out DCIS so they booked me for a mammogram guided biopsy. Because I've been so neutropenic & still have 2 weeks of chemo left, we scheduled it a week pfc. I don't want to get an infection on top of everything else.
Scan stress is real, I've discovered. I came home with a headache & a stomach ache & just an all over ache & even shed a few tears in the hospital parking lot. I'm SO tired of all this. Suddenly a bilat mx is sounding really good if I can avoid all this - esp if it repeats over & over again.0 -
I am so sorry Moth that you have to go through this. You have had enough and deserve a break. We will be waiting with you.Sending you calm comfort and healing thoughts ❤️.
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Moth; I'm so sorry - Not fair at all. Sucks. I hope there's a way to take care of yourself and distract yourself in the meantime, hour by hour. I'm keeping my fingers crossed for best outcomes, great care and sending you peace.
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Hello and thank you for the reply.im really happy to hear about your results it gives us hope.
I will see a surgeon tomorrow but am very concerned as now I can feel an inflamed lymph node next to the breast under the arm.
Did you have any lymph nodes affrected ?
Thanks again and wishing you all the best.
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Moujan, hope your appointment with the BS went well today. What did they say about the lymph node?
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Moth
Thanks for sharing. I can relate. I started taking night classes two years ago for acupuncture, 5 days a week, 49 weeks of the year. I was juggling a full time job and night school, and didn’t mind it as it is a good push for me to get out of office on time. Discovered the lump when I was studying for the licensing exam. Didn’t think it would actually be BC, so I went on with studying and the exam before getting it checked. After diagnosis, I have to cancer 2nd exam due to surgery. I plan to finish the 2nd part of exam next Jan.
I have been asking myself how should I plan my life around BC, do I live every year as if it was my last, or do I live and plan like there is 20 yrs ahead of me, I will make different decisions based on the numbers, but I don’t have a number. :-)
I will support you pursuing it if it fulfills you and energize you and make you happy, you will be a fantastic health care professional from the interactions here, I will also support you to hold off if it is giving you stress. Each person reacts to schooling differently. Maybe also evaluate your support system, to reduce overall stress burden by having more support on home care and child care etc.
Hello to everyone! Loving the group.
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Moth— thanks for the link
...I read your scan post, I think that post gave me the final push to do the chemo...if it lessons my chance from having to ever do this again, any percentage is enough. And hello to everyone else on this thread
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Moth, do it. Take the courses.
NVDobie, that has been a struggle for me, what plans do I undertake or not, if this damn cancer is going to come back and take me out of the game? Some days lately I feel like it never will come back but then I remind myself that I would be a damn fool to believe that. I get some idea about what 'we' should do and then I pull myself up short wondering if I will get sick half way through and leave Hub with a mess to clean up? I also find myself having thoughts like , how long does my life insurance policy cover me for, why did I only get a spousal rider, and how much will the pay out be and I better not do anything that gets us in debt greater than what my insurance pay out will cover. Who thinks like that?! I do. I used to think in terms of life plans. Now I think in terms of death plans. I can't explain it. It's not about the glass being half full or half empty. It's about knowing, at some point, that glass is going to get knocked off the counter. Now what? I have no answer but I absolutely understand the dilemma.
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Runor and NV Dobie, a cancer diagnosis certainly makes us look at death. Our own. Something we keep under the bed, like a childhood monster, except we know it is really there and can spring out at any time. It is hard to let go of the chilling fear sometimes.
I was inspired by Paul Dewar, the Ottawa MP recently diagnosed with Grade IV glioblastoma, the same cancer that killed Gord Downie. Incurable, terrible prognosis. His pastor told him to “Face death, then walk back into life." Somehow those words help me; I wrote them down in my phone and read them from time to time. One way or another, we all have to stare down death and not let it cheat us of life now.
Here is more about Paul Dewar, who is launching a youth initiative in the months he has left. I am not saying we all have to be heroes like this, but I do admire him.
https://www.cbc.ca/news/canada/ottawa/paul-dewar-ottawa-morning-brain-cancer-1.4701752
You are not alone in trying to manage the monster. Tell it to go back under the bed and stay there! For a long long time.
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Wrenn said, " I am not afraid of being dead but I am terrified of being there when it happens." Sorry, but that made me laugh. That's an Erma Bombeck sort of quote and I think it's brilliant! Seems to me that if we can wrap our heads around death, it brings us full circle to being as alive as we can be while we can be. A conundrum to be sure. Sometimes I get rather cavalier about it all and get this attitude that I have cancer, I have nothing to lose, I'm going to pull off that grand jewelry heist that I have always wanted to do, wearing a black stretchy unitard , bulging and jiggling as I slither across a museum floor while the theme to The Pink Panther plays in the background. Some people are transformed into saints by their cancer. I have chosen the criminal route. Way more fun. But I also hope to be absent when I die. I'm going to plan for that. I'll just be off somewhere with my big, shiny diamond.
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Kind of in the "stuck" phase at the moment, working thru it.
Do i retire at 47 to focus all my energy on myself instead of working to make corporate riches richer risking going nuts in the process for lack of purpose. Sad, but working has become such big part of life it is almost feel strange not to have to work. Or do i finally move on to my passion of Chinese medicine and acupuncture, so i can go help people in need but may not have money, and be OK to give up profession of last 15 yrs and big pay check that goes along with it. some say live everyday like last day on earth, easy said than done. Cancer has made me re-evaluate life priorities and how to interact with people, learn to be more empathic after non empathic MO experience. But some days the thought of returning to work is daunting, I miss the part where I can mentor and coach youngsters, I dread the part having to work with or for less competent leaders, nice people but not great at what they do. difficult to get really mad because they are nice people, difficult not to be mad because their skill set. see, already talk like true workaholic.
How did or is everyone manage work side of things after BC experience? do you find yourself slowing down ? How do I learn to cruise at work without investing so much?
Please share your wisdom.
Dearlife
Thanks for the link. Good analogy on the childhood monster under the bed. I like it. Also like the phrase" Face death, then walk back in life". Will think more about this one.
runor
How funny. My alternative profession fantasy is also an grant thief of sort, stealing from riches to give to the poor while mastering the art of deception and detection.
Maybe you and I could team up? I can focus my energy on this instead of corporate life.
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Runor could you please get us all a diamond? That would be saintly as well as criminal.
NV Dobie is there a way you could make a reasonable income from acupuncture and still help those in need on the side? It is so important to enjoy your work.
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Dear Life
I suppose I could over time, enough to make day humble living, but will be nowhere near my day job. Letting go of that is and will be difficult, or learning how to shift mindset so I could enjoy my day job as I could in an interest vs. a responsibility and drive to excel.
as stupid as it sounds, the so called success in my work has been an obstacle to let it go and pursue other interest.
Current mid term plan is to adjust my attitude and mindset to work hard enough to be a responsible employee, but not invest my heart and soul on a job. In the meantime, work less overtime to use them for acupuncture work.
I can give you call free acupuncture once i finish my last part of exam in Jan. :-)
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Hi All,
Your discussion brings back strong memories for me. I remember well how much I struggled post chemo and rads to get my life back. I think what you are feeling is common to many of us. The rug is pulled out from under us with BC, leaving us in a place where we are swimming in a sea of uncertainty. 2002 was a pretty rough year for me, much worse than the year of treatment. I'm the type that plans everything (project management background) and this disease makes it damn hard to do that.
After I was diagnosed I became quite involved with the Canadian Breast Cancer Foundation for a time, taking an active role in the Run for the Cure. At one point I gave a speech at an event, focusing on this very topic. Everyone thinks you go through treatment and then voila, you're done. Move on. Doesn't work that way. We all spend so much time in our lives planning for the future (family, retirement, savings, etc.) and I suddenly couldn't see that future.
Having said that, while it took time, I did get over this feeling and you will as well. NVDobie/Runor, you have no reason to believe this beast will come back. Many, many women diagnosed at your stage finish treatment and live their lives cancer free. Don't let Mr. Cancer win.Take courses, plan your futures and don't look back.
I know it will seem funny coming from me given that things didn't work out quite the way I hoped. The thing is, there are often certain characteristics of the cancer that raise the risk but are difficult to decipher from the diagnosis information on our profiles. In my case, I was quite young (38 at diagnosis), I had a lot of vascular and lymphatic invasion and my body struggled with the chemo a bit (had several delays - chemo effectiveness is tied to sticking to a schedule based on the cell cycle). Despite this it was almost 16 years before it came back at which point I had long stopped worrying about recurrence and even now my MO expects me to do well for quite a while.
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Sadiesserva
Thanks for sharing your experience. I can totally relate for being a planner. From this experience, I am hoping i can learn to appreciate life more so than before BC, and live with appreciation vs. fear. Today, that means picking up my Taichi practice which i dropped for 4 yrs, and finish my pursue of acupuncturist. One step a time, I guess. I can always debate with myself what i will do with my life corporate or healing others once I have my license next year. :-)
Thanks everyone for sharing.
Moth
Have you seen your doc? we are thinking about you.
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NVDobie - I had to move my biopsy to Aug 8. They were worried about doing it too close to my final chemo since I was so neutropenic so this will be almost 3 weeks pfc which should be safer. I did read the mammogram report and it certainly sounds like they're just being extra cautious. They put BIRADS 0 on it which means further imaging required but I know the subsequent u/s didn't show anything. I'm guessing I won't get results till the week of the 13th.
No news about radiation dates yet either- grrrrr. I can't make plans for the rest of the summer until I know! We have reservations in Osoyoos in August and we're all up in the air about whether we're going or not.
My biggest challenge at the moment is that I am supposed to supply proof of up to date vaccinations for my nursing program by Aug 4. That's for sure not going to happen because I'm missing Hep B & that requires 3 doses over 6 months & I haven't done any of them yet. Most of the other illnesses were ones I had during childhood but of course I have no records of that, & I've read that chemo patients sometimes lose that immunity as the memory cells are wiped out.
And the bigger problem is that nobody seems very clear when it's safe to start vaccinating after chemo. When I asked, I got a callback from the cancer agency nurse and she was clueless - only read from her guidebook that said flu shots were fine and then when I explained that was not my question, she just said 'oh, you should be ok' but online I'm finding guidelines that say wait 3-6 months pfc, that live vaccines are not recommended for even longer, & some of the vaccines have to be double dosed because we have impaired ability to mount an immune response etc. It's really complicated and there isn't tons of guidelines for adults so some of it is extrapolated from pediatric cancer survivors.I was kind of ticked to get the callback from the nurse because I called my MO's office specifically. The secretary obviously decided this was a question for the nurses - but there was a reason I called the MO and not the nurse question line. This isn't a simple routine question. I'm seeing my GP about it next week so maybe she'll be able to find some answers for me. I'm irritated at myself for not asking my MO when I saw him last. Now I won't see him again till mid September.
Fortunately first term clinical is not heavy on actual real patient care so I hope I can negotiate with the school to get my stuff done later and just mask myself until I get it all.
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Sadiesservant - nice to read your perspective about it all.
NVDobie - Glad you're going to finish your acupuncture training. I like your one step at a time thinking.
I keep thinking that one of the great benefits of doing the nursing school thing is that it's essentially 36 months of not having time to think about much of anything else LOL and then when I get to the end, there is still the huge licencing exam which people spend months studying for, and everyone says that the first year of working is just feeling like you're drowning and don't know anything... so I wouldn't have time to really think about cancer until the 4 or 5 year mark & the only good thing about triple neg is that if it does recur, it tends to do it early so if by then it hasn't, I might be able to stop freaking out about it. I hope so, cause right now, in my head, I still am mostly freaking out about it.0 -
Sadiesservant, I appreciate your words. While I am not a planner on the same level you are, I like to not make messes that anyone else has to clean up and suddenly it felt like everything and anything I wanted to start / do might be a project left for someone else to deal with. That made me feel horribly irresponsible and thus the most responsible thing to do would be to do nothing at all. I got my life in order, gave away jewelry, dunged out my closet, took bags and bags of stuff to the thrift store, got rid of furniture I wasn't using, wrote will, enduring power of attorney, medical directives, deleted my blog. And then it's like I was just .... waiting to die.
That got boring. Then my inner criminal / jewel thief became restless and a life of crime looked appealing and hell, who doesn't want to slink around in a black unitard all jiggly and blobby and NOT Angelina Jolie looking? Of course, rural BC offers little opportunities in the way of international jewel heists. Sigh. Maybe I can put on my unitard and tip some cows.
Life has slowly crept back in. Cancer is slowly fading. But still ... when it does pop back into my head, it does so with a sickening jar and that subtle threat that if I let my guard down, if I forget about it, if I get too happy and satisfied with my humble, dull life, I will be punished with metastatic breast cancer. Because reading the stats on this site BC shows up first as an uninvited pain in the ass. But the next time around she's a serious bitch. And that scares me. I have been grieving, scared, paralyzed and think the most dangerous thing for me to do is think I'm out of the woods. Because I'm not. And yet I have to live like I am. Because the other option just plain sucks. It is a very conflicting place to be and it's hard to explain it to people. Impossible, really. Yet when I look at life this time last year, I was in the cancer lodge with a weeping, peeling boob and pain and away from my family. This year I am in my garden, talking to the chickens (they are very easy to tip over, I suggest them as entry level livestock tipping) and working on silly crafts that make me smile. I feel lucky. Which makes NO SENSE considering everything I just wrote. Even though my days have begun to look the same as they used to, I don't think I will ever feel the same as I used to. My blissful ignorance of my own mortality was torn away and I will forever know that there is death waiting for me. Always has been. But I didn't used to think about it. And yet must carry on because there are few other options.
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You are seriously funny. I very much appreciate the slightly dark humor. I tend to move to cracking jokes even in the most serious of circumstances when it comes to my healthcare.
Totally get the mortality piece. Where I landed was that the balance tipped a bit more to the side of not depriving myself. If I want something, I buy it. I don't drink crappy wine and I don't scrimp on food. I won't lie, old patterns of overwork started to slip back in over time but I did find a way to enjoy each day and still plan for the future.
Oh, and BTW... sounds like you were a pretty darn good planner. I didn't do any of that in 2001 (of course, I had a lot less of an "estate" to get into order). Regret that now with a house full of junk and no desire to spend my days sorting through it all (and arguing with my 87 year old mother about the actual worth and futility of trying to sell things).
Cheers. Pat
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runor
The way I deal with the " inevitable death by BC, probably" has been " well, death is inevitable for everyone, and anyone could get hit by a bus tomorrow", so my fate is not much worse. Somehow it makes me feel better. Silly, but i will take whatever calms my mind.
Shopping always maike me feel better. :-) Although do feel guilty for creating more waste potentially, well, i am not perfect and I forgive myself. :-)
wrenn
Hope you are feeling better. Don't be too hard on yourself. I'd say you are in pretty good shape if only thing you got was bruise. Many could have broken bones and etc. My friend's mum slipped and fell when getting out of car, thatmaci broke her hip and she is only 61.
Moth
I went thru questions on Vaccine as well,. pharmacist said to talk to MO, MSJ nurse says go for it without any hesitation. resident MO googled to see whether the virus is live or not. Said ok to proceed if virus is not live. My own research matched what you are saying, that vaccine may not work because immune system is comprised. I wonder whether you can do a through blood work, to see whether you are back to pre chemo level.
Also, why not try to ask whether school is open to give an exception on the vaccine. assuming the program does have any in hospital sessions the first 6 months? if they do, then it will be harder to go without.
My hubby is a nurse as well, who just finished nursing program a year ago. PM me if you think he can be help with questions you have etc.
For radiation, look into Mepitel film if you have sensitive skin. New Zealand study confirmed it will help reduce the radiation burns significantly. Not all places carries them. but it is available is some specialty pharmacies, often close to hospitals. the manufacture website also have a video on how to apply it.
http://www.molnlycke.ca/en-CA/news-media/wound-car...
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Moth You can get your records at Abbotsford hospital In the lobby take the first right hallway past the information desk It is two- three doors down the hall on your left, There is a sign on the door
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Marianelizabeth. Who was your plastic surgeon again? A friend is looking for a female surgeon. SHe has had two botched surgeries and is starting all over
I have recently had latissimus flap and is beyond happy. All my scartissue pain from my initial surgery is GONE, YAY and my foob looks wonderful. My new surgeon said my skin was paper thin and in danger of splitting at any time so very happy i did this
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Wow, what a lot of interesting (and may I say entertaining in a way) posts to read this morning. Thank God for BCO~~honestly! We all wrestle with some or all of the same situations. I only wish that I could respond to each of you this morning but I am lacking in energy and in fact I'm back in bed watching the birds in my feeder, hearing the birds in the garden and appreciating this beautiful day from my supine position. I missed my 6 o'clock alarm today so missed my pain medications which I take everyday about time. I had to be up 8 o'clock to Take our car in for servicing and only then did I take my pain meds and it was way too late~~ the reason I am back in bed. I love to read your posts and think about them~~ how each of you, no matter your age considers or struggles or thinks about what to do while enduring whatever cancer we each have and whatever treatment we are facing. As I approach year seven in cancerland there are so many thoughts swirling around in my head that it is hard for me to focus on simple things. One year ago I was back and forth from Victoria to Vancouver at least weekly heading towards the metatastic diagnosis and this was only a few weeks following surgery for removal of my reconstructed breasts. I have almost forgotten that I had that surgery but I had hoped that it would solve the pain that I had had for a very long time but thought it was from various aspects of the reconstruction and second reconstruction that was supposed to fix the cording and contractures of my right breast. I look back now and realize that two years ago the tumor was growing and it was not the reconstructions that were going wrong.
Ah well, I now live in cancerland revisited and for the most part I am happy with life. Is is the adjusting to never knowing how my day will go based on pain, sleep, this week serious constipation, and the list goes on. I am so lucky that I do not have to worry about work that so many of you have to and that our insurance company is paying for these expensive medications and so many many more things. My husband after eight months has returned from sailing across the Pacific and that in itself is a big transition. I have been writing a blog posting my head for weeks on transition and just posting here today may help.to move along.
Wrenn, I too am concerned about that weakness that has come especially in the last year and having had my serious fall on Easter Monday that required stitches and terrible bruising seems not the end of it. I still stumble often and do feel weak. It seems unbelievable that I led that high altitude truck in Nepal 14 months ago. I am proud of that feat but it is taking some toll on me mentally to realize that it is way in my past.
Enough for now and thanks in advance for reading my ramblings.
Marian
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