My Husband, My Life, My Love, My Family, My Cancer
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Mae- True, we all live in different situations-- big city, rural, etc. But why were you asking in particular? I have only been to the ER a handful of times in my life, knock on wood. A car accident years ago, kidney stone attacks times 2, and the PE. None of which my MO would need to be involved per se. I would always call my MO to let her know of my situation/illness, but those situations are not about my cancer. And I have a med list with me in my purse so the ER staff would know what meds I am on. I would tell them I have MBC, if I was conscious. I have not had any procedures for the cancer that would require a possible ER visit---- except with my last liver biopsy. The biopsy was done at the cancer center's IR department, and they instructed me if I developed issues--bleeding, etc-- to go to my local ER and they would treat it or transport me back to the hospital there.
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(Cross posted in Ibrance thread)
Update on my MO appointment today: I’ll be leaving I/L for Fulvestrant and eventually Verzenio. Liver biopsy and Foundation One testing are in the works for after the new year because of travel plans DH and I have for over Christmas and New Year’s. MO didn’t mind holding the biopsy until then but Fulvestrant will start next week just so I’m back on a hopefully effective treatment sooner. Both drugs are subject to change if the biopsy rules them out.
I’m feeling better now that I know the plan. MO was very empathetic when she came into the room. She said, “We have to talk about your MRI, damn it!” I hope that didn’t offend anyone.
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Rosie- Sounds like a good MO (no offense taken). Biopsy would be the key, I think. They switched me to a PARP because of the BRCA mutation seen on the biopsy. Maybe they will see a mutation on yours that will direct your treatment to something other than Fulvestrant and Verzenio. Who knows.
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Oh Mara! So sorry you’re going thru this. Who knew walking could become a dangerous sport! Hope you’re getting the pain under control. Sending warm thoughts!
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Candy, I was asking because reports of long wait times at the ER got me thinking and wondering why? Since my diagnosis, I’ve only been at the ER once due to a severe reaction to chemo and once due to extreme pain (muscular, not cancer related) but both were quick and easy, I mistakenly assumed everyone is treated at a cancer center or hospital area free from general public crowds. Sometimes I’m so naive, I even surprise myself.
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Mae- I have only been to the ER once since the cancer diagnosis-- the PE. I am a massive germaphobe as you all know from my posts, so I would hate to have to go to the ER with all this Covid and our immunocompromised status. But, if it was an ER situation-- bleeding or the such-- I guess the germ fear would have to take a backseat. Otherwise I would call my doc, PCP, and try to get into the office. Yes, I think wait times are crazy now for the ER's. And no one can go with you--- not that I have anyone anyway-- but the visitor has to wait in the car.
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Candy, I know you can’t really get out to socialize, have you considered meeting up with us on the zoom group, there’s one on Monday and Wednesday, just a thought.
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I went to the ER twice during my 2018 treatment, and then last Sept when I broke my arm. Here you just go to the regular ER. If it's cancer related (like my neutropenia, plus now I have a sheet about immunotherapy sudden severe side effects) then they page the oncologists on call at the cancer agency who can access our oncology chart. Otherwise you just get treated by the regular ER folks.
I was told at the beginning of covid that if I was having covid symptoms, to call the on call oncologist myself because they were trying to admit people directly to a ward, or have them checked out in a clinic & bypassing the ER if at all possible during the covid surges.
When I broke my arm I was there, treated & back home within a couple hours.. no waits at all.
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mara, i know you're busy nursing your elbow but if you have a minute can you post some links to your amazon.ca wigs? I'm thinking of grabbing one for xmas & my regular wig store takes weeks to process & ship so I don't think they can get anything out to me on time...
hope you're doing ok mara & the elbow pain is manageable. oh wait, maybe you can't type with your elbow? in that case, totally ignore my request!!
we have snow - it's very pretty.. Well now it seems to be back to rain. But still have about 4 chm on the ground. I might take Olive for a longer walk soon
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I still have pain but am trying to remember to use my left arm as much as possible. I am not hungry at all yet but forcing myself to eat and I will probably go to bed early again tonight. Napped alot of the day and watch youtube. I would .like more of an appetite but guess it will come back later.
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mae- Thanks for the Zoom meet-up invite. I have thought about it before but have not joined in yet. You may see me there yet. Can you go to both the Monday and Wednesday meetings, or are there 2 time slots to fit everyone in so you are to pick only 1 day?
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Hello Lovelies ~ I hope we're all hanging in. There. I noticed today an email came out and this thread was number one for popular in 2021 in threads. I never dreamed it would do this well and I have you alll to thank. This loving place we made Together! Thank you again. Way to go !!!! Supporting caring loving sharing hoping dreaming living loving. All of us together. Always here. Always supporting. That's what we see here. A family away from a family. A scream or cry place. A yell or stomp feet place. A whatever you need place. I adore you all. !
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Monday started to fill up, so they added Wednesday too, both are different times, you can pick one or both. Monday’s are usually good for me but when treatment conflicts, I’ll probably pop in on a Wednesday. There’s a post for the MBC zoom group where registration info is, once you register, you’ll get an email invite every Monday morning. We’re a good group, I think you’ll like us. Tanya, KBL, Moth, Micmel and I think a few others have all joined in, which is pretty cool.
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Mae- your question made me think. I think most of Oregon is considered rural in comparison to some of the larger cities in the US. Even Portland with the academic OHSU hospital doesn't have a separate oncology ER that I am aware of. Maybe they do in Washington? I'm doing a face palm though because our hospital just built a separate cancer center opening soo that will have it's own imaging and infusion and clinical areas but not an ER. Duh! That would have made so much sense.
Yay for stable! The MRI report of the T-spine shows the lesion at T7 and T8 but it is stable and the compression fracture is not involving the spinal cord and nothing new was seen in the T spine area. It is unchanged from my last CT scan earlier this year so I don't think that there will be an issue with radiation. I see my MO's nurse practitioner tomorrow for the official word but that's what I understood from the report.
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Mae - I had to chuckle. First we'd have to get a cancer center (the closest ones are 4-5 hours away)... then maybe an ER in the cancer center. My new house is a couple hours from a major metro area, so there may be more options, if needed. I'm happy enough at a small onco center if the treatment is up to par. I'm a little nervous about finding new docs, but trying not to borrow trouble
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SeeQ, I hope you find some good, new-to-you doctors. I laughed about you "trying not to borrow trouble". I've never heard that expression. I like it.
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Emac, happy for your good results.
Mel, not surprised this is the busiest thread, we love the living room you created.
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Mel: this is THE BEST. A place for all of us. You are going to need a bigger couch!!
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I still follow along everyday with you ladies and cheer for good results, and for those going through so much- you are on my mind everyday.
I’ve been feeling blah for the last week so haven’t posted. Tomorrow we are going out for our 13 year anniversary which was on the 13th (oh my). Monday was too cold for outdoor dining so we ordered Wingstop, so romantic 😛 Now the temp is back up again so we will go eat somewhere nice.
Mara- get better soon! I know how upsetting having no appetite can be, hang in there. 💐
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emac- Woohoo for stable !!!!
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Well, I did cancel Herceptin for this week, just for now. My face is still swollen below my eye where my regular small eyebags are. I can see it when I look down. The massive face scrape is showing new skin underneath, gently cleaned it and will leave it without any polysporin today to allow for drying out. I may put a tiny amount of Vaseline if the scab that is left starts itching. Arm is still painful but improving. There are still things I need to do with the right hand but using left as much as possible. If I go shopping, I will UBER. Unfortunately the sling causes neck pain which is giving me headaches and they are worse than the arm pain
Though I know that I need to get back on the horse, I will still allow until next week before I go for it.
Focus this week will be housework that piled up, stay with the pain reliever as well, mentally heal the face injuries as much as possible before Christmas with some healing meditation off youtube.
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OUCH Mara….these things always seem like they take forever to heal. I do hope you are offered some regular physio when ready as that will help.
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Emac great news -stable.
My Pet results I got yesterday stable too. So grateful.
Mel congrats on this site being so popular. It’s a comfortable welcoming space for all of us.
I do t know if there is a cancer emergency room here in Tampa. I’ve gone to urgent care before Covid just to avoid the germs of the ER. I’m glad you brought this up Mae bc now I will check.Mae KNL it’s always great to see you in the zoom.
Booboo I hope you’re doing well.
Take care all
Tany
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Tanya- Woohoo for stable too.
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Tanya, so happy you are stable as well, wonderful news.
Karen, thank you. Not so sure about physio, we will see. The arm is less painful and I use the left one where possible. Keeping up on the advil as that works well. At rest it no longer hurts. My scabbing on the side of my cheek hear the eye is starting to fall off leaving tender skin which is good and a little less swelling under the eye as well. I have not been out since the fall on Sunday so will be grocery shopping with Chris and Kelly to get back into the swing of moving. Resting for the rest of this week though.
I did get an item at amazon that should help the sore muscles in my arm from amazon. It just supports the elbow on the forearm and upper arm which cannot hurt. At this point, my arm feels a little more painful than arthritis pain. Not too expensive as I have braces I wear for the forearms and hands to avoid tendonitis. I know the arm sling is best but have found, even upon adjusting it that it pulls down on my neck causing headaches so I abandoned it. I am also stretching my arm regularly to prevent stiffness.
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emac and Tanya, yay for stable! 🎉
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Emac and Tanya, Great news!!
Mara, I’m glad to hear your arm is less painful and the scrapes are starting to heal.
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Emac and Tanya - Congratulations on stable!! What great news right before Christmas!
My cancer center does not have an ER. I hope I never need to go because the wait times are terrible.
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If I somehow get hurt again, I will take an ambulance because I have been seen faster that way and I am always able to lie down which really helps. I suppose 7 hours is not really bad considering how busy it was when I got there. Mostly croups and young kids. We sat far away in the waiting room until taken in a room.
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Emac and Tanya- wonderful news ! Congratulations!
Mel- a big thank you for letting all of us join you in your living room each day
Mara - keep taking care of yourself. Do not push yourself to do things that can wait for a few extra days. I think the sling around the neck would bother me too.
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