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  • runor
    runor Member Posts: 1,615
    edited July 2018

    NVDobie, I struggle with that hit by a bus, we are all slated for death, thing. When I have told people about my diagnosis and the year that was sucked out of my life by it all and they wax poetic about how life goes on, we could all get hit by a bus, I seriously want to throat punch them. I can tell you that Before Cancer, thoughts of my own mortality were hypothetical at best. Yeah, death, it happens, whatever, to other people, not me.

    I remember not long after the biopsy and diagnosis, sitting in a local coffee shop with Hub, like we have done for years. But this time I looked around like I was from another planet. NOTHING was familiar. I did not feel part of the scene. I felt separated by a thick, glass wall from the way I used to feel , the way life was before. I was pounding and screaming and no one could hear me or see me. I could see them. The thing with cancer is that happy bubble of denial and oblivion that most of us blissfully reside in was torn away. Violently. And, SURPRISE, you're going to die and SURPRISE breast cancer is in the top 5 cancer killers of women and SURPRISE you're not 97 like you thought you'd be when things went sideways and SURPRISE those plans you had of growing old with your husband, well you can SUCK IT honey!

    So yes. We can all be hit by a bus tomorrow. Having cancer has not changed my chances of death since my chance of death was 100% the day I was born. It was just the how and when that never played through my mind on a daily loop. And people think that Albatross song is an earworm - wait until you have "I'm going to die of breast cancer sooner than I expected" looping through your head. Ugh.

    But then I try and be pragmatic and have a little talk with myself. Well, something was going to get you. What did you think, that you were really going to live forever? No. The fact was that I didn't think about it at all. Now I can't quit thinking about it. (well, I have quit thinking about it so much as more time goes by) I've become ghoulishly creepy because when I hear of someone's Grandparent dropping dead while playing bridge, I think, lucky bastard. Suddenly I am a judge of good deaths and bad deaths. Good death, being struck by lightning while golfing in the rain. Bad death: Cancer!

    So yes, we could all get hit by a bus. It's just that some of us see it coming long before it gets here and that, THAT is awful. But I do absolutely understand getting to the point where you have to say, screw it. I'm here, today I am not dying, today I feel okay, I am going to drink coffee and eat a chocolate bar and maybe golf in the rain. I try to wrap my head around the fact that everything has changed, but really, nothing has changed at all. Both are true.

    And now, an earworm...

  • janky
    janky Member Posts: 478
    edited July 2018

    Morning All - sun is shining here in Innisfail, another gorgeous weekend! Just to expound on the 'hit be a bus'. Friends of ours were in New Orleans at the beginning of December 2017, he did get hit by a bus, appeared fine, went back to Canada and died of a stroke Christmas Day :(

    Wishing everyone health, healing and a great weekend! j

  • dearlife
    dearlife Member Posts: 634
    edited July 2018

    Ditto on Runor getting published. You have a wonderful way with words and express what many of us feel.

    Buddhists regularly meditate on death. It is not something we often confront in western society. For those interested in exploring further, here is an article:

    https://tonic.vice.com/en_us/article/3k7vk5/meditating-on-your-death-happiness

    As for me, I hope that bus breaks down or is very very late!

  • hugz4u
    hugz4u Member Posts: 1,818
    edited July 2018

    Weighing in on hit by bus.

    A really old lady who I consider very wise (approx 80 )came to visit me with her pleasant even older DH.

    After listening to me spilling my guts about my new diagnosis and how my main worry was not me but getting my kid through the next 5 years of Sch,graduated, she said, you don't know what tomorrow will bring. Your child and DH could be hit by a bus or you could be.

    I was shocked at her insensitive comment and sucked air back in my mind.

    Over the years I thought about it and the more I thought,the more she was right. We just don't know what tomorrow will bring. she was also telling me just to live life one day at a time which was truly wise. It didn't mean I couldn't plan a future it meant not to get hung up on death.

    Turns out her husband was released from palliative 14 years ago with mets and she just past away last year. Who would have ever thought he would outlive her. Yup you don't know what tomorrow will bring so really the old lady was right, live life one day at a time. That was in 2004 and I'm still using my day to the fullest in ways I like. Sometimes do nothing sometimes run circles around the world. It's all up to me, I'm steering my ship and if I do get hit by a bus I hope it flattens me dead!

  • hugz4u
    hugz4u Member Posts: 1,818
    edited July 2018

    Marianne. Good to hear from you. On dang constipstion. there is a thread on the boards that a nurse for 40 years made. I read it about 6 months ago and it sounds like she's got the constipation thing all figured out. She posts on pain somewhere also. I find her very knowledgeabbut just can't remember her name. If I do I'll let you know. Nice to have DH home huh! I think it’s sas -schatzi thread on constipation. Yah there’s some poo jokes just to humor us but good otherwise. You have to read thru, some good tesearch

  • moth
    moth Member Posts: 3,293
    edited July 2018

    I don't relate to the being hit by bus thing because of one thing: ODDS.

    I'm a numbers girl (though ironically enough my own personal cancer blog is called "Never Tell Me the Odds" - a quote from Star Wars) .

    The odds of this cancer killing me are somewhere between 1 & 3 in 10. Those are way higher odds than anything else currently threatening me.

    I've been thinking about whether looking at the opposite odds is helpful in illustrating this issue: Jane is going to school to a program whose graduates report almost universal full time employment in their field at a very good salary with benefits. Her odds of financial success and security are good. Friend says to Jane, don't study so hard! Really, I don't see why you're even bothering with all this! After all, you might win the lottery tomorrow & you won't need to work.

    But what are the odds of that?? I mean sure it could happen, but I don't really see how it helps Jane live her life. She shouldn't just stop thinking about her schooling because she might win the lottery.

    In the same way, I really don't see any benefit to thinking something else might kill me in the next hour or day. I have a known and significant threat that I'm dealing with & honestly if anyone said any version of this bus thing to me I'd get mad because I think it sounds like it's dismissing something real & telling me to focus on some remote hypothetical with extremely different odds.

    Oh yeah sure, there's a shark gnawing on your leg right now but Betsy went into the water only up to her knees and fainted and drowned. See, you just never know! Um, this is where I'd join team throat punch. Well, first I'd punch the shark, but ykwim....

  • runor
    runor Member Posts: 1,615
    edited July 2018

    Ba ha ha, Team Throat Punch! Let's get t-shirts! Under Team Throat Punch it can say in smaller letters, "Get hit by a bus or get hit by me. Pick one." And then a scowling Rosie The Riveter type woman as a graphic.

    When you share a terrifying, life altering event with someone and they give you the 'hit by the bus' analogy, they are, just as Moth said, not actually offering you a single damn thing in the way of support. It is the dead opposite of support. It is telling you that you and them are exactly the same. That nothing really significant has happened to you. That you are selfish and foolish for feeling fear or threat or grief. That with a simple statement they will dismiss, nullify and undermine the shit you've gone through or are going through. They will NOT acknowledge the effort is takes to get back to acting like you're normal. As someone else said somewhere else, yeah, we could all get hit by a bus and I JUST WAS!

    The advice to live one day at a time is this blanket advice that mindless people blab off as if they have reached some pinnacle of spiritual perfection. It is EASY to say this shit when you have never been put to the test! I WAS living my life one day at a time. It's the only way any of us can live it, you mindless asshole who just might have given me that advice. It's a HUGE difference though between living your life one day at a time with the stunned oblivion that those days will go on forever, which is how most of us operate - auto pilot. Then there are those of us who live one day at a time knowing that that day has ticked us ever closer to the LAST day we will have. We are on the clock. Mark them off the calendar. Shit has gone wrong. Cancer comes back. Why am I suddenly coughing? Why does my leg ache so much? Why is there blood in my urine? I guess on this one day I will walk myself back to the doctor, like I have so many one days at a time already. My one days are spent thinking about my health and worrying about my death while making a Herculean effort NOT to think about my health and death. And we are the same as the bus people? I don't fucking think so.

  • Pots
    Pots Member Posts: 189
    edited July 2018

    I've been lurking for a few months and decided I should introduce myself. I'm 63, was diagnosed with MBC in 2017 and had a progression this year. My original BC was in 2013. I'm moving back to Vancouver in September after living for 8 years in Ottawa to be closer to my family. I know a lot more about cancer care in Ottawa than what it's like in Vancouver and BC. Any MO that you would recommend? What is the BCCA like to deal with? Do you have electronic records?

    On the bus analogy, I like it. It reminds me that none of us know how long we have to live. We think we do, that living to 75or 89 or 100 is our future, or is even a right.....but it isn't. It's an illusion, we don't know how long we have. None of us do. So living each day fully, to the best of our ability...is all we can do.

  • moth
    moth Member Posts: 3,293
    edited July 2018

    Pots, are you moving to Vancouver itself or to one of the burbs?

  • hugz4u
    hugz4u Member Posts: 1,818
    edited July 2018

    Welcome here Pots the more the merrier! Well actually in truth, the more here the more knowledgeable we become. Be have been very active here last few weeks!

    Here is my take on dr chia in Vancouver. Clever doc but high and mighty personality. He got my invasive stage three cancer under control and I asked my Breast surgeon if she would chose him for a mo if she needed one she said definitely. If you want warm and fuzzy don't go to him. Otherwise he's a smart cookie. Still kicking but a close call last feb. scared the pants off me.

    Ps I actually knew a girl same age when I was a spring chicken of 22. She moved to big city to spread out her wings and three months later got backed over by a tow truck and died. I only found out because it was in newspaper pics and all. Sad when they go so young.

    How's all in the heat. My turn to look after 93 yr ma with broken arm out in valley. Getting crankier each time the thermometer climbs a digit and I'm talking about me not mom! 90 on deck hotter inside. No Ac. Leaving tomorrow once duties done. Going back where I belong. Breeze between my knees! Where it's cooler,by the ocean.

  • Pots
    Pots Member Posts: 189
    edited July 2018

    Thanks for the warm welcome. We're moving back to Vancouver proper early September. We lived in North Van previously. Hopefully we'll find a main floor house rental in the Main and Fraser area. I want to be close to my daughter and grandson who are over by Fraser. I'm also looking for a GP, apparently my Cancer Center records have to be treansferred to a GP. ny recommendations?

  • Pots
    Pots Member Posts: 189
    edited July 2018

    Thanks Wrenn. That’s interesting news about the NP, we don’t have them yet at the Ottawa Cancer Center. I’m relieved that there’s another option to addressing the lack of GPS. I’m in Vancouver later this week and thought I would drop by BCCA to get a feel for the place. Where do you get you CT scans done?

    Thanks for the info about Dr. Chia. I see my MO on Aug 14 and hopefully she has a referral set up.

  • moth
    moth Member Posts: 3,293
    edited July 2018

    I'm at the Fraser Valley center so can't help with MOs in Vancouver.

    There's a huge shortage of GPs and many people do not have one. The BC College of Physicians used to have a thing on their website where you could search for doctors accepting new patients but they shut it down this spring. It seems the only way to find who is accepting new patients is to literally call the doctor's offices one by one. If your daughter has a GP, try asking at their clinic if they'd take you.

  • moth
    moth Member Posts: 3,293
    edited July 2018

    NVDobie - I just realized I forgot to reply to your post... That's cool that your dh is a nurse & just finished school recently. My dd is in the same program I'll be in; she's 18 months ahead of me so I have a tutor and mentor right at my kitchen table lol..

    & about the vaccines, turns out the BC CDC seems to have the best info on it. For anyone interested: http://www.bccdc.ca/resource-gallery/Documents/Gui...


    They say to wait for 3 months pfc (or radiation but I think that's only if rads are to the bone) because otherwise there might not be enough seroconversion. But they don't prohibit doing it earlier except for live vax. So I think I'll be able to do DTap & start the HepB series now. Measles is the one that might trip me up as I can't find records of having it as a child. I will probably end up doing titres for it & if I don't have immunity, that one will have to wait until 3 months & even then, you need a form signed by the MO to do it. First semester clinicals are low risk - mostly observing & towards the end of the term they do blood pressure clinics. Starting in January though we do a rotation at residential care for seniors.


  • moth
    moth Member Posts: 3,293
    edited July 2018

    Oh & now a vent..

    I've been getting increasingly antsy about not having the dates for my radiation treatment & just being told to sit and "wait until we call you, keep your schedule clear", so I can't book holidays, don't know how much school I'll end up missing for rads if they run into September etc - just all of it ticking me off because it doesn't seem to be patient centered care when they just leave you hanging at their whim & dependent on THEIR schedules.

    So last Friday, I called the radiation people just to see if I could get any info & the clerk cheerfully announces - "oh yes, you have a mapping CT scan on Aug 1 & before then you need to also get to a lab to have a pregnancy test because they won't let you do the CT without it"

    My jaw kind of dropped because that is the following Wednesday. WHEN were they planning to call and tell me about this appointment???

    And I had a doctor's appointment booked for that Wed to deal with my vaccinations and had to cancel it & now my doctor is gone for the rest of the summer so I'll need to deal with her locum who doesn't even know me & her first open appointment is a whole week later. Argh. If they'd called me earlier I might have still been able to get an appt with my GP before she left.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited July 2018

    Moth. Yup we have to advocate for ourself even if it means phoning to find out what is going on with our treatments. So many holes in the system.

    I'm so happy your daughter will be able to help you. I've found learning at my age with brain fog is no easy task. Good kid you have!

    I'll be checking in once in a while but busy with my time helping folks on the lymphedema thread at BCO. It's a nasty beast to look after, I have it!

    Anyone with even one node out or sentinel biopsy should visit the thread to get educated. A high percentage Of people get lymphedema from BC treatments, RADS can bring it on to.

    MO and docs don't know much about it as they learn very little about lymph system in med school. Docs usually don't recognize you have it unless your arm is really swollen big. Mind is hardly swollen, looks same size as other arm and my doc blew me off when I mentioned it. Fired him.

    Good thing I got education from our lymphedema thread before it was to late. Early Stage is reversible otherwise it's frightand progesses. BC the disease that keeps giving. Forward March! Take care. I'll pop in everyso often. You girls rock, so helpful! :

  • NVDobie
    NVDobie Member Posts: 122
    edited August 2018

    Moth

    Thanks for the link for the vaccine. I did mine during chemo but right before next cycle. either that or start from the beginning with 200 shots each for 3 shots. long story.

    I had the same experience with Radiation office in Vancouver, they said they will call but the call never came at the time they said, based on past experience with medical offices, I start calling them every two days, even that didnt get a date. Only till i went to see my MO, who said you are starting radiation soon, eh? I was like no, i dont have any dates, he saw the dates in system but ask me to call to confirm the dates with Radiation office. So they called me on Wednesday telling me i start on Friday, then called me on Thursday saying it has been changed to Monday.

    One of my friend who gone thru this warned me that BCCA often call only a few day prior as they are trying to sort thru network of schedules........

    Also about mepitel film, i used it but had a skin reaction to the film so took it off after 24 hours. I am sensitive to the most of tapes. Just want to mention it to you.


    hugs4u,

    good callout on lymphedema. I ran into a few BC patients at Inspire health, finding many patients dont know you could develop it months and sometime years after surgery. I am still reading up on it.




  • akmom
    akmom Member Posts: 98
    edited August 2018

    Hi all,

    I am back on the BC boards after an uneventful (BC wise) few years. It’s a bittersweet feeling seeing a few familiar names on this thread <3 Sorry to see that some have progressed to a higher stage since I last visited here.

    Unfortunately DCIS has returned in my previously radiated right breast, and I have a new area of DCIS in my left breast. The right has to come off for sure since they can't radiate again; surgeon said I could try lumpectomy and rads on the left or just opt for BMX. Having already beat the odds (not in a good way) with the recurrence and now having both breasts involved, my initial reaction was to have the BMX, without reconstruction.

    My surgeon is Francis Yih (Jim Pattison Outpatient Centre in Surrey). He recommended I talk to a plastic surgeon to discuss reconstruction options before I made a final decision. After some thought I cancelled the PS appointment because I am quite sure I do not want reconstruction. So I called Dr. Yih's office and BMX is now set for August 14th.

    Dr. Yih is a general surgeon and I think he is pretty new (seems very young to me, at least!). I wonder, has anybody here had dealings with him?

    Also, anyone else opt for MX without reconstruction? Trying to figure out if I should have discussed desired outcomes with the general surgeon since there will be no PS involved (e.g. don't want him to leave excess skin in case of future reconstruction).

    Thanks for any feedback - the wealth of knowledge in this forum is much appreciated!







  • moth
    moth Member Posts: 3,293
    edited August 2018

    Hi akmom, sorry you find yourself back here.

    Are you sure it's not Francis Zih? If it's Dr Zih, he did my lumpectomy. Love him.

    He did a fellowship in surgical oncology in the US and seems really on the ball. So while he's also a general surgeon, he is specifically certified as an oncology surgeon as well. I had questions post lumpectomy and emailed him (he gave us his email) and he called me back within about 10 minutes and we had an unrushed conversation on the phone. Maybe that's an option? Also if your surgical plan has changed somewhat since you last talked, maybe he can bill another appointment - I'd ask Bonnie at the front desk...

  • janky
    janky Member Posts: 478
    edited August 2018

    akmom - Reconstruction is such a tough one! I had a single, left mx November 2016, thinking that I would have reconstruction after a suitable healing time. It took me months to feel human after my radiation, so then I decided I was okay with being half and half, wearing a prosthetic periodically. Then I decided I would like to consider reconstruction, no half and half, no periodic prosthetic, had an appt with a PS, then discovered I was MBC almost a year to the day of being told I had cancer :( , I then spoke with a Radiation Oncologist who recommended a PS that was familiar with stage 4 patients - I met with him and he feels I would be a good candidate, if, when the surgery is due,I have no new progression. It sounds painful and a long 6 week recovery, but in the process I get a 'tummy tuck' and a boost on the remaining boob! both of which sound appealing!! By all means, speak with a PS if you have questions. If you are having a complete MX you will probably be fine with your figure, it is amazing how quickly we can adjust to the 'new' us...(I am still not sure what I am going to do) Ha ha this is such a long and winding answer, just more to think about, have a great weekend...

  • akmom
    akmom Member Posts: 98
    edited August 2018

    Moth, yes it is Dr. Zih, not Yih that I am seeing. Thanks for your comments; I really liked him too, found him very kind and patient. So glad to hear your experience was positive. I will give Bonnie a call.

    Janky, thanks for sharing your experience. I think I would have found the “half and half” harder to adjust to than going flat - but I guess I will never know now. Hope all goes well for you with the reconstruction plans xx



  • akmom
    akmom Member Posts: 98
    edited August 2018

    Thanks Wrenn, it does mean so much to get feedback from people who are on the same path and all information is gratefully received! I am almost 63 and have lots of support from my husband so don’t anticipate any regrets either about passing on reconstruction.

    Think I had better talk to the surgeon before the MX to make sure he is clear on what I want (and don’t want)..

  • Pots
    Pots Member Posts: 189
    edited August 2018

    I had a mastectomy on right side and a lumpectomy on left in 2013 when I was first diagnosed. One the challenges I've had with my prosthesis is that I had to replace it when I gained weight. Darn Letrozole! Now I have several depending on whether i'm Skinny me or not. Originally I was going to do reconstruction however when I saw a PS she said she wouldn't do it until I lost 40 pounds. Thanks Letrozole! After 5 years, I've made peace with being a bit lopsided. Yes I miss not having cleavage, yes i've Had to change what I wear.

  • akmom
    akmom Member Posts: 98
    edited August 2018

    Glad you've made peace with the new you, Pots. I did a purge a while ago of the “skinny” clothes I hoped to get back into someday; now guess I will be reviewing the contents of my closet again to see what will work for the new me.....

  • JJ62
    JJ62 Member Posts: 36
    edited August 2018

    akmom I periodically follow this dialogue- though not from B.C.- please don't hold that against me! I am also happy with not having pursued recon. I was 47 when diagnosed. There are are some discussions in this forum you might find interesting:

    https://community.breastcancer.org/forum/82

    Best wishes.

  • akmom
    akmom Member Posts: 98
    edited August 2018

    JJ62, thank you for the link, will do some more reading. (I don't mind that you live in Saskatchewan if you don't 😉

  • NVDobie
    NVDobie Member Posts: 122
    edited August 2018

    akmom,

    You made me laugh. :-) Welcome.

    I don’t have MX experience, but do understand the dilemma. One of questions I would ask was whether the reconstruction will impact future treatment in the case of local recurrence. Also can reconstruct still be a option later on if radiation was done post mastectomy.

  • moth
    moth Member Posts: 3,293
    edited August 2018

    How's everyone doing in this heat? I normally really like warm weather but even I'm finding it a bit much sometimes.

    I finally learned today that I start radiation on Monday. I've also started the process of getting my vaccination records sorted & up to date for school in September.

    Oh & had my biopsy on the right breast yesterday - fingers crossed it was just an overly cautious radiologist. I enjoyed having ice packs down my top all day yesterday. I recommend it in this weather LOL.

  • marianelizabeth
    marianelizabeth Member Posts: 1,156
    edited August 2018

    I have been following all of your posts including your last one Moth and you have so much on your plate including school. I do want to respond to some posts but with guests airing in an hour for two nights and me still in bed, it will not be right away. It is hot but we are luck where we are in Victoria as we normally have a good breeze. My hot sweats don't care if it is hot or not and often I actually drip on the floor or wherever.

    As for me, I was not sure if I posted my latest but I think not. Sorry it is not good news. Coy/paste here for expediency from another thread and dated last week, Aug. 2. As for me I'm not sure how I feel but I gravitate between fear, anxiety and my usual positive self. I saw my MO yesterday for my monthly visit. Last month she said that she was sending off a message to the Vancouver BCCA regarding my MRI from July 31st last year. She wanted comparison from that MRI to the one done June 20. The head of radiology at the Vancouver BCCA who had followed on my testing last year as well as doing the core biopsy, did that comparison and wrote a report. Bottom line is that progression and much more enhancement extending further and involving neurovascular elements, muscles, pleura with loss of peripheral fat planes whatever that is. There is more but Ibrance has stopped working and today I start Capecitabine (Xeloda). There is no way that I have absorbed this information and I have lots of questions. I did not really see this coming even though the pain has worsened and the breakthroughs more frequent.

    I know many of you have already faced this kind of a jump and so you will know how I feel. Again I'm so happy that we have this group (and the other thread I follow).

  • dearlife
    dearlife Member Posts: 634
    edited August 2018

    Dear MarianElizabeth, I am sorry to hear of your progression and I know you have been battling pain. I hope the Xeloda works for you without many side effects. Your positive spirit will rebound and help you through this. Gentle hugs.

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