Starting Radiation December 2020 group
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TwoForOneSpecial, How often does that happen where you are going? That is crazy to me!! At least they are open on Sunday so you don't get too far behind; my facility isn't open on the weekends. I totally support making them accommodate a time that is convenient for you since you have been bumped around so much. Bright side is all the extra goodies you can make now that you don't have to go in! I need to look up the "cocoa blocks" - that sounds so cool! And homemade marshmallows - YUM! Wish I was nearby so you could share those goodies with me and save yourself the calories.
I'm at MD Anderson, which is where the bell originated from what I have read. It sits in lobby area for the radiation area. Since the facility is specific for cancer treatments, I'm sure the setup is much different than a hospital would be. There is a garden of hope in the center of the facility as well. I'm sure I'm charged for the "extras" somewhere.
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yay Poppy! Congrats on being done! Btw, I went back for my BSN but was derailed by cancer. I was half way through an accelerated program, 18 mos to go when I had the metastatic recurrence. It's one of the many things I'm super bitter about
I get a 4 day break now, back to it on Tuesday.
The bell thing is super controversial. For stage 4 pts who never get to ring it can be very hurtful to hear it. Not all feel this way of course but many do. Anyway.
Happy holidays!
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CONGRATULATIONS, @Poppy!!!!!
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My treatment is in a separate building, the "Cancer Center", but still part of the hospital system. They tell me it's unusual for them to have this much trouble with the equipment, but it is 2020 . . . I missed 2 days last week, made up one on Saturday, then Monday it was down again but up by the afternoon. They don't usually do treatments on the weekends, but do open up when they have to for continuity in treatment.
I can see the issue with the bell and people with terminal diagnoses. They may finish their radiation treatment, but they're never really done with treatment. Good to have an occasional reminder that things could be worse. I will celebrate in my head, even if there's no public anything. Of course my family will barely notice when I finish and will probably just ask what's for dinner...
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crbmwgs - because we'll probably be back, again & again. It's not the end, kwim? Though there's a limit to how much they can radiate one area but lots of ROs will prescribe essentially whack a mole therapy so they'll radiate a different spot as needed. Chemo for life, rads recurrent. It would be like ringing for every dose of meds. If we were to really ring the bell, it's because we're coming off treatment & going to hospice.
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Congrats Poppy! An excellent Christmas present!
Mmm...the baked goodies sound yummy! I'm baking a little myself today too - chocolate cupcakes and sugar cookies (for Santa, of course 😋)
moth - just big hugs to you. Being dealt a terminal diagnosis is just a $h!t present to be given that effects you and everyone else around you. You and your family are in my thoughts. 6 years ago my family "lost" my mom to GBM after just 7 months. She was only 57. Cancer just blows, period.
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crbmwgs - oh no, not at all! I'm sorry if my response seemed harsh at all. It's a different experience being a mets pt though I gotta say even as a stage 1 in 2017/2018 I would have had no interest in bell ringing It just never felt like anything to celebrate but of course so many have such a different experience with this. This might tie into the threads where some people speak about rejecting the warrior and battle and survivor terminologies... I wonder if wanting to smash the bells also correlates with wanting to smash the battle metaphors.
Anyways. It is what it is. Cancer is a shitty card for everyone and we all do deserve to celebrate the little things and the big things, in whatever way works speaks to us
Thx mama2four kids. Hugs to you on the unfair premature loss of your mom. Stupid cancer & GBM is particularly brutal ,honestly. Grrrr. 0 -
Moth, I actually wouldn’t have rang the bell had anyone else been around. But my place only allows one patient in at a time. We have to wait in our cars for the patient before us to leave. Otherwise, I would’ve never done it. I cant imagine how hard that would be to hear. My team was really excited for me, and I took the moment, knowing that it wouldn’t impact anyone else. I did cry...the ugly snotty kind. My heart is with you. Especially I am so sad on your nursing school and all the other dreams that this horrible disease have derailed for you. Sending you a big hug. I know this probably isn’t a huge comfort, but so many of your posts have helped me along the way as I’ve tried to learn more about TN. I was a lurker for a long time, but always have appreciated your comments and insights. I just wanted to say thank you for that.
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Poppy yay!!! I’m so happy for you!! What a Christmas gift!! Please stay!!
The machine worked today but they were about 45 minutes behind which was weird they are never behind. It was nice though because we all stood in the hall and chatted. Just like us all the ladies had different res toons diagnosis and levels of care. Everyone started showing their scars which was funny too me. One of the ladies said she had to stop radiation because she got really swollen and started leaking from her scar!! 😳😳
Moth thank you for the reminder and perspective. I never knew until recently that there was no “cure” for stage IV. 😓😓 much love light strength and peace to you.
I’m so tired today and itchy. I hope the three days off gives my skin time to heal!!We’re doing hibachi for dinner. Cooking tomorrow so not cooking tonight too!
I hope everyone has a great night and day tomorrow if you celebrate Christmas!! Much love to you all!!
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CRS, I love that you are having hibachi tonight. My husband had to go to his Mom this year and I cannot travel, so I’m solo for the holiday. But, I’ve decided to celebrate big and ordered a ton of sushi and some Prosecco. I even got dark chocolate sea salt mousse for dessert. I’ve decided I’m spoiling me with an end of treatment/Christmas Eve celebration! And we will do “Fake Christmas” when he gets back next week. All in all, as hard as being apart is, I think I may be winning.
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For Poppy and others:
I remember having those out of the blue bursts of anger over nothing much after my mother died. Apparently, that kind of anger is actually a part of depression (I know. At the time, I remember thinking, “I'm not depressed; I'm pissed!). Maybe it will help to know the possible cause
I haven't had much of that through my treatment - more feeling overwhelmed and emotionally fragile at times.
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Hello! I remember having those out of the blue bursts of anger over nothing much after my mother died. Apparently, that kind of anger is actually a part of depression (I know. At the time, I remember thinking, “I’m not depressed; I’m pissed!). Maybe it will help to know the possible cause
I haven’t had much of that through my treatment - more feeling overwhelmed and emotionally fragile at times.
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Hello! I remember having those out of the blue bursts of anger over nothing much after my mother died. Apparently, that kind of anger is actually a part of depression (I know. At the time, I remember thinking, “I'm not depressed; I'm !). Maybe it will help to know the possible cause
I haven't had much of that through my treatment - more feeling overwhelmed and emotionally fragile at times.
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Hello all. I started my rads earlier this month. Reading some of your stories makes me thankful I am within driving distance to treatment.
I’ve been doing hypofractionated radiation and finished my 16 whole breast treatments last week. Had my first of four boosts on Christmas Eve, so my last treatment is 12/30.
I’ve been doing pretty well with minimal issues. By last week, my breast was red, warm, and kind of tender, but nothing too awful. My skin is starting to feel irritated, though, especially on the outside where my scar is. And now that side and the nipple feel sore and super sensitive, My RO said to use just aquaphor but I have also used aloe and the Epionce medical barrier cream with aquaphor on top of that.
The MO is prescribing Femara but told me not to start it until a couple of weeks to a month after finishing radiation.
I hope everyone had a Merry Christmas.
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I hope everyone is doing well and enjoyed the holiday time off! Most of us are back at it again this week...and I don't know about you gals, but I'm thankful it's a short week. I don't know if it's the after Christmas blues or if the tamoxifen/radiation/cancer craziness has finally caught up with me, but I'm bone tired these past couple of days...and honestly just plain feeling down in the dumps.
Mskiles - welcome and congrats on tomorrow being your last treatment
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Hello everyone!! How are you? Everyone is quiet this week!
MAMAI’m with you. I’m very meh this week. I’m tired and my chest itches so bad. And I’ve had a few holy S$&T I am in the middle of cancer treatment. Seems very surreal. Besides the fact that my job is unbelievably stressful and I think as soon as I’m done with this I’m going to have to work on my resume, LinkedIn and all that fun stuff...
Poppy how was your quiet Christmas? We had a great Hibachi meal lol.
Hope everyone is having a good week! Is everyone 4 days this week too?0 -
I'm only 3 days this week. Monday and Friday are both statutory holidays here.
Post holidays blahs are a common thing though so far this year I've dodged them. I've been chilling, playing with the dog, walking and catching up on Netflix
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Hope that you all are keeping well and were able to relax a bit over the holiday. I took it so easy. I think I mentioned my husband had to go see his mom, so I was alone. As much as I was dreading it, it ended up being just what I needed. I got lots of good snacks and spent the time evenly split between napping and eating. I caught up on a lot of Netflix, too. I really needed the break from work, life, treatment, all of it. And the dogs really loved a cozy few days. Husband is back now, and we will be doing fake Christmas soon. I kind of like still having presents under the tree.
Moth, I’ve been thinking about you a lot and am just so mad for you about your nursing school. It’s not fair and it stinks. I wish life made more sense. I know we’ve just met, but you deserve that dream.
I’ve been having some weird feelings about end of treatment. Being TN, it’s a strange feeling as you leave the cocoon of treatment. I don’t know what the next few years will bring, but after having nine months of such close care, it’s almost scary to think so much of the monitoring is now up to me. It’s a strange feeling I wasn’t expecting.
I think about you ladies a lot. I hope each of you is keeping well. I wish I would’ve found this site at the start of my treatment, but am so glad to have you all for support. I’m hoping we can keep in touch for a long time.
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Poppy what do you mean by a lot of the monitoring is on your own?
I’m sure it’s all part of it but I just wanted to scream stop F’ing touching me I can’t move one more CM my arms are fine where they are leave me the F alone. I was just over it today.
I’m fine now am sure I’ll be fine tomorrow but today sucked lol.
I don’t know if it’s like this for y’all but my appt is at 9:45 and I always talk to the 9:30 and 10:00 ladies. Tomorrow is the 10:00 ladies last appt and she is so excited to ring the bell. I may stay and watch her ring it. It makes me think about what Moth said. It’s so heart breaking to think about stage IV patients and all the emotions of it. The flip side is this lady is so excited to celebrate being done.
Hope everyone has a great NYE. We’re going to dinner with some friends but nothing crazy. I’m so tired today and know that tomorrow will be even worse I’m sure.
Much love
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crsharper - after you finish treatment, the survivorship guidelines call for very little monitoring. Physical exam, including breast exam every 3-6 months for first 3 years and then decreasing frequency.... The patient is supposed to be educated about what symptoms to look for and what to report. The guidelines recommend against routine scans etc (except mammography for those who have breast(s)). The guidelines are here if you want to have a look https://acsjournals.onlinelibrary.wiley.com/doi/fu...
I suspected I was having a recurrence. If I hadn't been aware, I might have waited a lot longer before my dr saw me.
Poppy, glad you had a quiet break and now you get christmas all over again. We keep our tree up for ages - at least till Epiphany and often longer. Outside lights until spring. Let the sparkle carry on as long as possible. Thank you for your kind words about nursing school. I am technically on sick leave from the program so the admissions advisor has to email me each semester (3 terms/year as it's an accelerated program) and ask me if I want to reapply for a spot. Ugh. Knife twist each time. And I sort of think....well, maybe? But it's silly. I'm exhausted and honestly, I have no idea how little time I have & being in an intensive hard program is not a good plan. If I got to NEAD though....sometimes, a girl can dream...
We are on lockdown. Ban on social gatherings has been in place for almost 2 months. Households can go to a restaurant but not mingle with anyone not living in the same household. To put an additional lid on partying, our public health officer just announced booze sales end at 8pm on the 31st. Restaurants can stay open beyond that but can't serve alcohol; bars have to close at 9. Interesting to see how differently it's being done in various parts of the world. Anyway - I don't think I've even stayed up till midnight for years now so I'll probably just be going to bed lol
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Glad we're back to chatting again ladies, it was usually quiet there for a bit!
My chest has a little bit of a burning feeling since yesterday. My RO noticed a red line around where my bra band sits and recommended something looser, so I switched to a cami top with a built in bra. I feel no support now and the girls are moving around a little and I don't know if that's the reason for the burning feeling or the radiation is just catching up to me. I might just put a bra back on. I've been wearing medium support sports bras since my surgery.
crsharper - I hear you on the stressful, overwhelming feeling of work. Sometimes I welcome the distraction, but lately I've been dragging and it's a struggle. I actually work for the health network I'm getting care at, in a non-clinical role...I've been working from home since March though. And I'm sorry today sucked...hopefully tomorrow will be better...at least it's the last day of treatment for the week!
That's nice you talk to the other patients...I try to too if there's someone there. Often it's just me. It's not all breast cancer patients where I go. There's men too. I'm definitely the youngest by 25+ years though, which feels weird. Today was the 9 o'clock appointment lady's last day. Her name is Charlotte (same as my oldest daughter) and she is 78. She was so excited to be done as she was experiencing some nasty burning. I cheered for her, I couldn't help it, she looked so relieved and there was no one else there. Poppy - a friend of mine from work was TN too. She's just a little over a year out of treatment and she mentioned the same thing of feeling odd after being so closely cared for for so long. With those of us that take hormone therapy we're still seeing our MO's for the next several years and always have check ins with that. I can see how worrisome (I don't know that's the right word) being released out on your own would be
moth and Poppy...suggestions for any good shows/series on Netflix?
I hope everyone has a good New Year! We're staying home this year...ah, who am I kidding, I haven't stayed up to midnight since I've had kids...someone always is up by 7am, so staying up late just isn't worth it 😆
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Mama My RO told me that under my breast may bother me too and I noticed a red line forming last night. My RO told me to not wear a bra too and to wear tank tops and fold them under so there is no skin on skin. My issue is I’m a 42DDD so not wearing a bra isn’t really an option in public. No one wants to see that. 😂😂 they do all sorts of radiation where I go too but they have a women’s dressing room and a men’s dressing room. So we chat in the dressing room. There are little changing stalls but then we’ll open the curtain after we’re in our robes.
Thanks Moth for the link. I’m going to check it out. I’ll get a mammogram every 6 months and see my MO pretty often also. But I guess I didn’t think about how long that would last.My husband had melanoma 11 years ago that had spread to lymph node. It was a crazy time and I remember every time he went to an appt I was a nervous wreck. He went every 6 months for 7 years to get lung X-rays and bloodwork for liver. And then anytime he would have a headache I would be scared for brain Mets. I guess I’ve been so focused on treatment that I haven’t really thought about next steps. So much to think about!!
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Moth, I am with you 100% on leaving the tree and lights up as long as possible. Sometimes we get so late in January we close the curtains, just so,the neighbors don’t think we are completely weird. I just don’t like the. Christmas sparkle to go away. And I’m going to dream for you too for a nursing school miracle. The way you take care of so many people here, you would be a kick ass nurse. The world deserves that. You don’t have to feel obliged to answer, but since we had such similar treatments, did you have a lot of aches in your joints post chemo? Mine seem to be getting worse...mostly hip, wrist and hand. I just can’t find a lot on that. I hate to be the girl calling wolf and bugging my MO in between visits. Maybe it’s all from chemopause...and still waiting to see if that’s permanent or not.
Mama, if you are getting burning, ask for samples of different creams. That’s how I found my magic bullet. I was rashy, red and so itchy. Once we found the lotion that worked for me, it was almost immediate relief. My RO was great about giving me all kinds of samples to try until we found the right one. I also switched to plain tank tops, without a built in bra. I have very small breasts, so could get away with that. I think the light support and free flow of air really helped me to heal. Especially with the radiation rash. I don’t know if you are looking for pure escapism, but I sat on the couch and watched the entire first season of a Norwegian Netflix series called Home for Christmas. Kind of Hallmark movie-like but so beautiful. I want to go to Norway now! It was perfect for couch time, doG snuggles and Christmas tea and cookies. I’m so glad I took this week off of work to rest and start to rebuild,And thanks for sharing your story about your TN friend. It’s good to know it’s normal feelings.
CRS, I’m jealous on the changing rooms and camaraderie. We have to wait in our cars and they call us when the patient before us leaves. It would’ve been much nicer to have others to go through it with. I guess because if that, we just changed in the treatment rooms while the techs set up the table, that part always felt weird. Enjoy your dinner out tomorrow. That sounds so amazing! I don’t think I’ve been I a restaurant since March...that will be a fun first to look forward to. Still on the low end for the WBC counts, so pretty housebound for the duration.nalthough I do occasionally sneak out to the grocery. But only at off times, and I’m super careful.
Well, as you can see, my insomnia is still going strong. I’m really hoping to shake that soon, but so nice catching up with you all! Wishing you all the best in 2021.
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Poppy/Crsharper - thanks for the tip on just switching to plain tank tops. I kind of made my own bra out of one...gathered it up and knotted it on the non-cancer side. It's snug under my breasts, so no skin on skin underneath, but not tight enough to cause an irritation. It seems to be working, I just can't go out in public like this lol. Good thing it's winter coat season
I'll ask my RO on Tuesday for some other cream samples. I still have 14 more treatments to go. I'm having my simulation on Monday for my boosts. I'm going to be on my side they said. Not sure if that means more tattoos on my back or not. Hope you guys are having a good New Year! It's freezing rain here, so we're just staying in, which is a-okay with me. Maybe I'll send the hubby out for pizza or chinese...I'm just not in the mood for cooking 😉
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moth - is it possible to take only one class at a time towards the nursing degree, not the full-time load? I don't know how it is in Canada, but usually there are general education requirements that go along with any degree. If you haven't already finished those, maybe work on one of those? No matter what life brings dreams are still worth working towards, imo
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I am almost done . . . 2 boosts left, so should finish on Tuesday!
I have had almost no side effects other than some skin soreness and redness, really nothing of any concern. However, today I have this strange ache that's really bothering me. It feels almost like something in my lung, except it's in my upper/outer chest area, almost in my shoulder on the right (treatment side), and I don't think lungs are in that area. I definitely feel it more as I inhale. It's mostly a dull ache, but at moments it gets pretty painful. I can feel it all the way from my chest through to my back. Of course this would happen on the Friday of a 3 day weekend when I won't have anyone to ask, so that's why I'm asking you ladies if this sounds familiar to anyone. I suppose it could have nothing at all to do with radiation, but I have no idea what else it could be from.
Of course my mind immediately goes to bad things, although rationally I understand that it probably is not.
Any thoughts?
Hope you all had a pleasant (although likely uneventful) New Year's Eve and day . . . I was in bed by 10:30 after watching several episodes of Bridgerton on Netflix (a good distraction - a little soap opera like but entertaining and with beautiful costumes). The kids (teens) wanted to do their own thing with their friends (remotely) so we didn't have much of a family celebration. We never even opened the bottle of sparking cider, but I suppose we can have it tonight.
Take care everyone,
Rachel
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Mama2FourKiddos - unfortunately not possible. I have a prior degree & I'm a board certified lactation consultant but our nursing bachelor degree programs are self-contained & full time. They also require clinical placement (8-12 hours/day for 2 days a week each semester except for the final semester which is ALL clinicals & one online course). I was halfway through an accelerated 36 month program & would have been graduating Aug 2021. Other than my bio, pathophysiology & stats courses, my credits don't transfer to anything else. I could go to plan B which was a Master in Public Health degree because I could do that part time/online but.... the other big elephant in the room is, so what then... even if I finished, how long am I going to actually survive after and would I want to be working (& this is sort of obnoxious but I don't actually need to work. This was sort of passion project type stuff & funding for my dog hobbies & travel). My entire (& what I thought was brilliant lol) plan was predicated on living into my 80s ... based on my grandparents' and parents' longevity & health. Median survival of stage 4 breast cancer is 3 years though some subtypes have been getting longer times, it's really not likely for me as I have the worst type.
I think I'm going to lean hard into my dog hobbies instead and have to let this go (but all my nursing stuff is still piled beside my bed so obvs not quite emotionally ready to let it go)
Saw my RO yesterday but nothing new. Treatment is going well. He gave me a scrip for pink lady in case I got esophagitis later on but wasn't expecting it. Last tx on Monday.
Happy New Year, everyone!
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TwoforOneSpecial - well, lungs go up above our clavicles so it could be lung
Do you have any other symptoms? Shortness of breath? Dizziness? Chest pain? Stomach ache? Anxiety or just general feeling unwell? If so, I'd go to emerg.Honestly, I'd call the cancer center and see who answers. There is an on call oncologist usually though I guess it depends on your center whether patients can speak directly to them. Wouldn't hurt to call and see what happens when you call the regular number.
If you're feeling mostly same & not getting worse and not having other symptoms, you could probably wait to talk to someone on Monday but any other symptoms in addition, I'd get checked out.
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