Starting Chemo September 2015; join us!
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Annie- Every time I have to wait more than 5ish minutes I seriously consider bolting.
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Last time for my #4 AC I waited an hour for a chair, I so wanted to walk out it was ridiculous!
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Hello All,
We are interested in hearing your experiences on issues related to your diagnosis and/or treatment,such as sexual matters, weight gain/loss, chemo brain/chemo fog, bone and heart health, exercise and nutrition issues, menopausal concerns, lymphedema, infertility, neuropathy, joint pain, skin/hair changes, relationship changes, work and career hurdles, and emotional issues including fear of recurrence. Please don't feel that you need to address each of these issues. We are listing these as suggestions. Your stories will complement a new, upcoming section on the main Breastcancer.org site on Survivorship issues.
Some things to think about for your story: Have you gained a new perspective on this other side of treatment? What life lessons have you learned? What advice would you give your newly-diagnosed self or other person just starting the journey? How does your "old" self compare to your "new" self? Is there a difference? What impact has your breast cancer diagnosis made on your life? If you've become a Breast Cancer Advocate, what is your mission and how are you fulfilling it?
If you're willing to share your perspective of your life after diagnosis and treatment, we'd love to hear from you! Please send your story via PM to the Mods along with a picture of yourself or something that represents you, and a note about how long since you've been diagnosed. Seeing these stories will surely inspire our new members, along with members just going through treatment now, to see that you CAN get through treatment and get to a new normal on the other side.
Your story will be included with the other Members Stories photos on the main site (http://www.breastcancer.org/community/acknowledgin...), in our December Newsletter and may also be used in part throughout the website and/or in fundraising or event materials.
Thank you for considering!
--The Mods
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SouthernCharm- I don't think that people are against me. I do feel like everyone is busy living their lives and this breast cancer just doesn't fit into their scheme. I feel like my issues with this part of my life are more mental than physical but when you are constantly nauseous and vomiting you really don't make a great person to be around. This started from before chemo but the nature of chemo just makes it worse. I wish it had never happened to me, as I wish it never happened to you. It just happened at a place in my life where I don't have the financial, physical or psychological support that I need. I don't blame my friends and family- I hate seeing my hair coming out in bunches. I want to be the person I was last year- cooking, enjoying food, spending time with my relatives, enjoying spending time with my boyfriend.
Kimmer- I know if I were not so sensitive(or my stomach) I would be able to cruise through chemo. My stomach is my weak point. I have had surgery on my stomach and had problems in the past. I just was thrown by the breast cancer. I still go, "Me?" I had problems before surgery. Chemo is just the hot peppers that inflame the whole situation.
Artista- I have a long history going back to college of depression and anxiety. I am fully mentally aware that this is all linked in but because of my insurance and the state of mental health care, I can't get the care I need. Even the therapist associated with the cancer center recognizes it. Breast cancer just complicated my life. I have other chronic diseases- we get along. This one just doesn't want to play fair. I had pretty much gotten used to my demons until BC came along. Suicide is not the answer or the question. But when it hurts to live and nothing is pleasurable, and there is no one who wants to play, suicide does come up. I just want things to get better.
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It's so humiliating to stress cry in front of people. "I'm just having a weak moment. No I'm not in pain. If you could just leave me alone and stop asking so many questions" geez people I can't be the first person to ever have a stress moment!
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Oh wow, you have to wait for a chair? The center here reserves you a spot so when I go in, I go right to room 7 which I ask for because the view of the atrium is better and I can also see better into the exercise center cardiac people working out.They already asked me what I want for my breakfast tomorrow. I have my usual fruit yogurt, fruit cup, muffin and juice. And they ask you several times while you're there what else. I tossed in a roast beef sandwich last time. The hospital masseuse comes around offering feet massages while the gal at the front desk is eager to pass out cute caps you can keep. It's like a hotel type service there minus the bed to sleep. They have heated recliners with heated blankets and tv in each room. Very homey. The thing about this place is the woman who designed it is a former cancer pt herself. So she had the right thought of what is comforting. I think all cancer centers should have such a warm environment. I can't believe there is a wait time when you have an appt. I'd be putting up a shit big time even if it doesn't make a diff if not find somewhere else.
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Grey- Things do get better but in the meanwhile you have to do whatever you can to help yourself mentally. The power of the mind is amazing. I never sought help before I fell bad in 2006. I was just popping pills. Therapists didn't tell me anything I didn't already know being I studied Occupational Therapy and Psychology in university. They can't tell you what to do. They can just listen and provide you with avenues for you to try but then you have to commit to trying. Maybe you can get some self help books. I used that as well. I just cruised Amazon. Wayne Dyer was one of my fav authors for realistic thinking and living. See what appeals to you. And again, I highly encourage finding peer online support. Like I said, my bffs are online not in real life except for maybe 2. It's there. Just reach out and take advantage of online support and self help books. I haven't seen a therapist in 4 years, soon after I got out of the hospital was the last time. I'm doing it myself and it sure wasn't easy. You have to be determined and not say but but. Take what you can get.
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Artistsa, I'm jealous of your center. I'm at a major cancer center but it isn't nearly as comfy as yours sounds. They have food but it's self serve and very basic - noodles in a cup, Campbell's soup, cheese and crackers. The recliners are two or three in a group so there's not much privacy. I can get a massage though. That is a nice treat. Everyone working here is very nice though and always checking how I'm feeling and if I need anything. I don't have to wait long for a chair but once I'm there I wait quite a while for the drugs to come from the pharmacy.
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yeah i usually go right in but they had a unforeseen issue that day. We shall see this Friday if I have to wait. Dang Artista I need to move to your spot!
lmao
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Twiggy you go to OHSU Near waterfront, sounds like a familiar service
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arista I want that concierge chemo service. Twiggy mine is self serve too. Very friendly and caring but catered service and foot rubs? I want. Can the magic genie wave the sparkly wand to grant us all that? Arista you can make that happen right?
Annie & El Tigre I also hate the waits. Last week the infusion floor had over 100 patients scheduled it seemed like every 3 weeks it's an onslaught of people & I go every 2. And yes Annie it sucks to have a crying breakdown and people start looking at you like you are bat crazy. Had that last week and just wanted to crawl in a hole. Your last chemo has got to be a lot right?
Lindy good to hear the fever cut you a break. Grey keep posting you are doing this and we got your back.
CarolinaAmy if you are still reading hope you are doing ok.
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Yep, that's where I am now. Round 4 of 6 going down.
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just a note I have been using vag antififungal cream like clotrimazole or monistat over the counter when the wu wu gets peeling burning but I am on an antibiotic also because of a port infection
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Waiting to hear back from the triage nurse. With the amount of fluids passing through me (threw up again this morning) there's no way I am drinking what I am losing.
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Just got back from blood draw thru port at infusion center with a couple of leaps through the adjoining door into my MO's office. They asked if I wanted to wait at infusion center for the results or MO's office. Uh. I don't care for exam rooms so the center! I was offered stuff while I was waiting and just took a juice. My time changed so they canned the continental breakfast and ordering me up a caesar chicken salad for lunch. I've aligned my every other infusion with this nurse who is the biggest gem in the world. All of them are but I can't get over how sweet she is. Probably because she's a survivor herself. So back for #2 AC tomorrow! yay! :S
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Sorry I haven't been around much, holidays are coming. As I mentioned before, 4/4 AC complete. Round 1/12 Taxol complete.
I am SO allergic to the stuff they mix with the Taxol. My airway didn't constrict, but my ears then face went red and my stomach started burning after just 20 ml. They doubled up on the Benedryl and halved my infusion rate. It took forever, but I got through it.
I preemptively gave myself two double brown cows just to be safe after the infusion for dinner & breakfast (Prune juice laced with Miralax & Milk of Magnesia and a side of Docusate just to be safe). While I never felt like I was going to have an accident, the diarrhea was certainly frequent and semi-explosive. When I don't try to poison myself, things seem to be moving. Any nausea seems very mild and mostly to be a result of taking antibiotics along with antacids (Prilosec). Bleh. I haven't touched the anti-nausea meds at all this round. I definitely feel more tired. Whenever my son went down for a nap, I would take one too. It could also be my low hematocrit (sp?) - they're telling me if it's not the AC dragging my red cell count down, then I might have to get a blood transfusion this next round. We'll see.
In happier news, I'm nearly done with my Christmas shopping (getting everybody tickets to an air museum dinner/fundraiser/beer tasting - so easy!). My 17-month-old son is another matter, though. He's growing so fast I could use some ideas for toys or how to keep him occupied on rainy weekends. This weekend, he managed to climb up onto our COUNTER stools and onto the tall table; he proceeded share his excitement via a rambunctious dance and then leaped into my arms as I ran over from doing the dishes. I'm not sure what would hold his attention when he's stuck in the living room/kitchen area and Mom can't read to him. He's started putting the mega blocks together, but not much. Climbing into the dishwasher isn't really a viable option. I'm happy to let him turn our couch cushions into a fort to play in or climb, but he doesn't quite think to do these sorts of things on his own. It's tough being the only kid in the house. Any good ideas for toys?
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We had to relocate the bar stools to the garage after too many finger painting with dish soap episodes.
Last year for Christmas he got an Octonauts playset and a Mickey Mouse Clubhouse playset. That age is tough because they don't have an attention span.
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Gray, hang in there, please! None of us wanted or expected this cancer crap! You have many friends right here.
Artista, your center sounds similar to mine or maybe just slightly better. There are a dozen individual rooms although maybe eight of them are divided spaces. Reclining chairs, TVs, heated blankets if you wish, a nice lady who offers to bring you stuff to eat or drink (I usually take my own) and they will bring you lunch if you're scheduled over the lunch hour. They have free wireless and today I took my laptop so I could download a bunch of huge files. I live in the woods near the mountains, so my internet connection is expensive, stingy and not particularly speedy. My work involves sending and receiving a lot of photos and large files, so it's nice to be able to access that resource. This hospital is on the outskirts of town with rolling hills and mountain views in the distance. I've encountered only one icky nurse but that was the night nurse after my surgery. Everyone at the infusion center has been kind, helpful and competent.
I usually don't have to wait to get in although once in a while the MO has been really busy. I think the longest I ever waited was 30 minutes but today (Taxol 4 of 12) it was less than 10. I'm now seeing the MO every third week instead of each time like when I was on the AC. She said my blood count was better and that the runny eyes are left over from the AC.
I've also had very sore and weak thumbs for several weeks now. It feels like I have to be very careful or my nail might come off. Apparently that's a leftover from the AC as well. I miss my opposable digits! They're important!
DLcygnet, does you son have a sit-on toy with wheels that he can move around using his feet on the floor? I've seen many little kids using those to great benefit. They love them and it keeps them busy. The ones my grandkids had were nice wooden ones.Here's something plastic from Toys r Us:
http://www.toysrus.com/product/index.jsp?productId...
Dose 4. Apparently my primary SE from this stuff will be fatigue. Looking forward to the residual AC issues going away!
Comfort and best wishes to all!
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Thanks Skittle and Luzee. The doll houses (club houses) look great! You're absolutely right about the attention span, though, he tears things like that apart and then walks off. Yes, he has a push/sit cart; short of building him a a ramp, he doesn't seem interested in riding on it unless Dad is pushing him. He'll push it into me, though, or between my legs I should say. I saw a small plastic basketball hoop or a trampoline that looked promising (and not too expensive); not sure if he's old enough.
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Grats Annie! Margarita Monday as soon as you're up for it!
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wow already! Congrats Annie!
Hazel
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Next I go for radiation mapping on Dec 1st. Then 2 weeks later radiation starts for 7 weeks. They gave me a choice today. I need to decide on either monthly Lupron shots or oopherectomy.
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Kid toys...toddler plastic slide, tiny trampoline, tents and tunnels, shape sorters, wood puzzles that have 2 to 4 pieces and that soft doll that helps you learn zips buttons and snaps (I can't remember the dolls name)
Anything that helps strengthen fine motor skills so you build muscles for writing.
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I think I'll do the shots for 3 months and see how bad the SE are then decide
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Are bone scans painful?
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Thanks Annie! Hadn't even thought about puzzles or dolls. Sounds perfect.
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Southern, I have an infusion tomorrow too. So I'll think of you from my chair to yours.
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Annie- Bone scans aren't painful. It's the bone biopsy that is. I just had the scan done last month to find out what a spot on my pelvis is. You get an injection of isotopes then you are told to come back 3 hours later. It's like getting a CT. You like down on your back and the scan starts from your head and slowly goes all the way to your feet. You can kind of tell when it's almost over as it goes along. I think it was 1/2 hour maybe 45 min lying there. Just when it's over your face close your eyes cuz it looks like it's inches above you. Otherwise it's like this "concrete slab" looking square thing that just moves down.
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Thanks Artista. That made me feel better about it.
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