Starting Radiation August 2021 - Anyone else?
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Esther - thank you! I really appreciate you and your thoughtfulness. This experience was not expected as I'm sure it wasn't for all of you. This is not what I expected. I really didn't think it was going to be this difficult, but I praise God that I'm still here alive and breathing, knowing that this is just temporary. So many people think that rads is "a walk in the park" compared to chemo," yeah right! Nothing about cancer is a walk in the park. I said early on that this was not as bad as chemo; well I'm changing my tune now. This is just as bad, if not worse than chemo, for me at least.
Tomorrow marks one week from my last treatment and I have this idea in my head that some sort of switch is going to turn on and that things are going to start getting better as of tomorrow, lol. Wishing thinking. I realize that some of this is already part of the healing process and that it's going to pass, but wow, this has been one heck of an experience; one I don't wish on anyone.
Jen - I'm with you and indulging a bit; it's the Doritos for me, lol. Thank you for being so caring and reminding us to be kind to ourselves. I think it's something that we really must practice on a regular basis.
On another note...it's a beautiful sunny autumn day here. I'm hoping to muster up the strength and get outside for a bit and enjoy some fresh air.
I hope you all have a lovely day!
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Happy Sunday ladies
First of all, I’m sos prey for being gone so long. I feel like the days have been a blur! I started my hormone meds - Anastrozole and I have no major SE’s *knock on wood. Some fatigue again in the morning, but I think it’s because I’m not sleeping well at night. Hot flashes subsided thank goodness. And I felt well enough to adopt a puppy!! Ivy - Happy very late birthday and happy end of RADS!!! For me, it was about the 2 week mark that I was in the most pain. It was a constant burning because my skin peeled and was raw (Like when we were kids and would fall and scrape our knees and palms) it was THAT feeling!! But it was my nipple and entire areola. I believe it’s because I was prone and they had my breast resting on a foam block. The RO told me that skin fold areas are the worst foe burns - I’m sure that’s why I experienced them there, that foam block wrinkling my skin during treatment! I called my Dr crying in agony, they gave me some burn cream with a numbing cream to mix in and Motrin-8. The burn cream stopped the pain!!
A week later I woke up one day and the fatigue was gone! Just gone..I felt awake and energetic! I was able to go shopping and cook dinner which was huge for me. And now 1.5 months out from treatment my skin is back to normal and I’m able to wear a real bra! So there is hope!
Tinkerbell- Congrats also on finishing treatment and celebrating with lunch!! So wonderful.
Mimi - Welcome!! I didn’t ever have pain during a treatment, my skin just started blistering and peeling 2 weeks after my last treatment. Like a bad sunburn. Lee up those lotions! They help! I think mine could’ve been much worse otherwise.
Kristy - Definitely get the hotel room. I am hopeful you’ll be able to at least make an appearance at the wedding but a 4 hour round trip drive would tire me out on a good day.
Esther & Jen - missed you both! Love you to the moon & back and hope you’re doing well. Loved the stories, you two always make me laugh.
Love you all! It’s good to be back.
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PS my new fave snack
And the puppy
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Ivy: OMG Nacho Doritos - I love them so much. LOLOL Always have! And dill pickles - LOL (I mean, really???LOL) I've always been a salty/crunchy kind of girl - I'll take a Dorito over a candy bar any day. So weird! LOL
That said, Michele, I LOVE those apple chips. I find them deeee lumptuous!
And that doggy is so darned cute! SO CUTE
And I found chemo to be truly horrific - like true torture that felt frightening - reallllly scary to me - and endless (thank God it ended LOL). That said, I found radiation to be horrendously awful too - in an entirely different way. It just sucked and I hated it soooooo much. It also felt endless (thank God it ended too LOL). The thing about cancer treatment that I've found is that it has a "keeps-going-on-and-on" sort of feeling - and each aspect of it is just crappy and awful in one way or another. The cumulative impact has been very intense, overwhelming at times, and very exhausting for me.
Michele I'm SO glad to hear that anastrozole is not terribly hard on you (so far?) - thank God. Thank God! I believe that's the name of the med I will go on after my surgery at the end of the month. I'm terrified of more side effects. Also, I'll be put on some infusions too - ugh. It's just all so much. And it goes on and on and on. I super duper hope that I don't have bad side effects from the med, on top of the side effects I'm still experiencing from everything else. Unfortunately,the neuropathy in my hands is getting worse and worse. I had a chat with my oncologist about it - he says that it's a late onset from chemo and that 85% of people say it goes away ( mostly) by 6 months to a year after the last infusion. Um, that is a whole 15% of people who have to live with this crappy side effect forever? OMG! Also, even if I'm in the lucky 85%, 6 months to a year feels like a LONG time to endure this pain. My hands fall asleep and I cannot wake them up - like for an hour. Like they stay asleep! YIKES! It hurts so much and also makes sleeping hard (on top of the other side effects like hot flashes I'm taking meds for etc). And there is this awful shooting pain in my hands - omg seriously? Really, people. OMG! LOL.
I don't want to be ungrateful. I just have a lot to adjust to - and I have to learn to live with a lot of this stuff - but at least I'll be alive. That's what this is all about, right? So I'll deal. The hair, the fatigue, the pain from radiation, the seemingly endless other side effects from surgeries and treatments etc - God willing most will subside. But regardless, I'll find a way to settle in and manage through it - somehow. I just have to keep reminding myself: hey, I can taste water again! Doesn't this glass of water taste good and watery?? LOL. And hey: I can walk for longer than 1 block now - doesn't that feel great to walk further than a block again? LOL And hey, I'm here to be with my husband and watch my kids grow and change and I am here loving them all very fiercely, so who cares about the hair thing and the pain in my hands. I'm working on this stuff - perspective matters.
But then there is this: I remind myself that it can all be true at one time: life is so beautiful and so painful and so wonderful and so horrible all at the same time. I think we all really have this reality in our faces all of the time.
Love you all, even as we all struggle. At least we're here together.
xo
Jen
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Jen - I love your attitude. One thing I learned. Having a "positive attitude" does not have to mean kidding yourself that everything is wonderful when it's not. It's just about appreciating the positive, and knowing that there are good things in the future.
An exercise that I like:
5-4-3-2-1 Coping Technique
5 steps to take for anxiety relief. This can help reduce symptoms of anxiety, trauma triggers, or other unwanted thoughts.
First – take a breath. Breathe in for 5 seconds, hold it for 5, then breathe out for 5.
Then go through the numbers in order, to help ground yourself in being present in the moment. You can name these things out loud, or just acknowledge them to yourself.
5. Name or acknowledge FIVE things you see around you. A bird, a pencil, a light, however big or small, state 5 things you can see.
4. Name or acknowledge FOUR things you can touch around you. Your hair, your clothing, furniture, grass, whatever is around you, state 4 things you can feel.
3. Name or acknowledge THREE things you can hear. This need to be external, not your thoughts. A clock, a fan, a car, your foot tapping, whatever you can hear in the present moment.
2. Name or acknowledge TWO things you can smell. This might be harder if you are not in a place where there are smells. Is there cologne of lotion on you? If there isn't anything, walk to where you might smell something – a candle, soap, coffee. Focus on the smells around you.
1. Name or acknowledge ONE thing you can taste. Focus on what you can taste from the inside of your mouth – gum, coffee, tea, what was the last thing you ate or drank?
These five steps are a way to ground yourself in the NOW. The idea is to take you out of your head and help stop the flooded thoughts going through your brain. It's about taking back control of your thoughts by focusing on what your senses are taking in at the present moment, to help you stay grounded in what is real.
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Michele - good to have you back. Thank you for the birthday wish!! What you described is exactly what I'm going through; the rawness of the skin, especially in the fold under my breast. I don't see or feel any new blisters today, so I hope that's over. I appreciate you sharing, it really gives me hope. I see my MO on Tuesday and one look at face and my skin and she'll be calling down to the RO's office to get me relief. I know she's going to want to start m eon Xeloda right away, but there's no way, not with how I'm feeling.
I love those apple chips!
Your dog is such a cutie. Here's my Apollo dressed for Halloween. (see below)
Happy to to hear that the Anastrozole is going ok for you!
Jen - Nacho Doritos are the best! I'll take the candy bar too, lol. I'm a sweet and salty girl. I can't do pickles though, I can't touch or smell them. Weird enough, I like cucumbers and love vinegar, why I have such an aversion to pickles is beyond me.
These treatments are all the "gifts," for lack of a better word, that keep on giving, aren't they? Hair - check; Neuropathy (still) - check; taste buds off - check; overall feeling crappy - CHECK! With the exception of the hair (and hopefully the taste buds), it's part of a new norm that I don't want, but will live with it if it means having more time with my amazing son and caring people like all of you. I really mean that. You ladies have really helped me get through this and I am eternally grateful to each and every one of you!
Tinkerbell - I use to use the 5-4-3-2-1 technique with my students all the time. Worked so well for them, never thought of using it on myself. Thanks!!
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My post just disappeared. Grrrr.
Tinkerbell: THANK YOU for posting that exercise. OMG that is very helpful. I read through it carefully and then copied and pasted and will keep that in my "back pocket" to use as needed. I reallllly appreciate that concrete help. That is useful for real! THANK YOU!
Ivy: You have been so super helpful to me - I cannot thank you enough for sharing what you've been through. I've felt so freaked out at different times in this process - and at some of the scariest, hardest, most freaked out moments, you've been there and you've genuinely helped by telling me about what you've been through. I'm so grateful. I'm so so so sad to hear you're still dealing with neuropathy - it REALLLLLY sucks, doesn't it.
And you are HILARIOUS about the pickles and vinegar and cucumbers omg! LOLOL!
And Apollo is SO CUTE! OMG!
Love to all.
Jen
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Good morning,
Catching up on the thread. Tinkerbell, sorry about the skin in the armpit. I am getting rads to the armpit, but like Serendipity my arm pit is numb still, not sure if I will ever have feeling back. The price we pay for treatment.
My commute is 15 minutes each way, so not too bad. My chemotherapy was 45 minutes each way so this is much better.
I will keep you all in my prayers. Esther thanks for the suggestion - I marked off two on my calendar this morning! 23 to go.
So thankful for all of you who have gone before me and help light the way. I appreciate all the advice and suggestions.
Mimi
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Thanks Jen! He's a cutie, but can be naughty at times!
Mimi - yay to marking another day on the calendar.I looked forward to coming home and doing that. 15 minute commute vs. 45 min. sounds much better.
Just came back from RO's office, couldn't deal with the pain and the skin under the breast. She gave me Mepilex. I think Michele mentioned this early on, or maybe it was in the October thread? Asked for a numbing cream or if I could use Neosporin and she said no, RO does not give anything out to numb the pain as far as creams go other than the Miaderm which has some lidocaine in it, offered me pain meds, but I refused. Nurse says everything is looking they way they expect and nothing out of the ordinary, told me to keep doing what I'm doing on my breast and chest as the new skin is coming in; and by the way my skin looks that she anticipates things easing up by the end of the week. I hope and pray so.
Hoping you all have a wonderful day!
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Serendipity - sounds awful. Someone my daughter knows recommended oatbath for burns. She took oatmeal and put it in a pantyhose and soaked in water until murky. She then soaked a clean washcloth in it and covered burned areas for 5 minutes repeating a few times. I'm thinking of buying the oatmilk in the carton they sell and trying that if the skin care regime fails me at some point. Sorry you are not getting relief from the RO. Marking the calendar is satisfying!
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Mimi- I've heard about oat baths, might try it! Thanks!
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Hi Ivy, I’m so sorry!! I took a look and it was lidocaine cream they gave me for numbing - they also gave me a tube to mix in with the burn cream which was this:
For pain they gave me Motrin-8 which really helped. A Dr once told me that the 800 mg pill is different than taking 4 200mg pills & I’ve found that it really does work well for me. Since it’s not a “pain med” in that sense maybe it will work for you 😊 I hope you feel better soon. It was literally one day I felt horrible and then next I woke up feeling good. Waiting and hoping that good day comes soon for you. Love you much!
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Hi Michele! That above image is very accurate of my life right now. LOL! Thanks for sharing.
I've read quite a bit about silvadene on other threads, going to make the request, even though I just came back from the RO's office again as I need more mepilex than what was given to me yesterday! UGH! So frustrating they won't give me a cream. His nurse insists that he wants it to heal naturally and I appreciate that. I might just have to take a pain pill, granted the mepilex is doing wonders. I'm draining quite a bit, I'm assuming from the blisters I can't see, no infections Thank God! Maybe putting anything on it will impede healing?
My MO took one look at my skin and said no way she was going to start me on Xeloda; will see me in three weeks to start the 8 cycles, so 6 months. First sign of intolerable SE's and she'll take me off. I brokedown, I'm just so tired and feel like my body can't handle anymore. I'm hoping that these 3 weeks will be a good enough break and by then my skin will be healed from rads.
It's a beautiful day here, going to get a walk in!
Love to you all!
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Michele: The track image is PERFECT. I hope you don't mind but I copied and sent it off to some key people. I find it very validating and amusing and painful all at once. Thank you for that!
Ivy: OMG sweetie pie I'm SO sad that you're hurting so much and they won't give you relief. OMG. I do think that 3 weeks will help. It's been a week since your last zap, yes? (Sorry my brain isn't good with details like that right now). It took 2 full weeks before I started to notice the agony beginning to reduce even a bit, so you're close to that happening. But that doesn't help you right now in this awful moment, does it. Wish I could be by your side. Sending so much love your way. This sucks!!!
And Mimi - thinking of you. Glad marking the calendar works well for you! Whatever it takes - let's get you through this!
I met with my breast surgeon's team yesterday. Apparently it was a 5 month check up? LOL. I had an appointment on my calendar and I was like "gee, why am I going there?" but I went and said "what am I doing here?" LOLOL. I was SO tired that, as I wandered into the patient examination room, a nurse said "honey, you look so tired" and I Was like "um, yeah." And when the next nurse came in she said "you look really tired" and I laughed and blurted out "well, I guess this is the first moment in my day when I don't have to pretend I'm ok." I couldn't believe it came out of my mouth. But there it was, hanging in the air. She was so kind. She said "yes, we have to make it through each day but it is exhausting to always be acting like you're ok when you're not." OMG I started to cry! I was grateful. Anyway, there were many reasons she gave me for being there. But she did do an exam, and said that I should manage my expectations about how long it will take for the INSIDE of my breast to heal from radiation. She said, the skin heals rather quickly - relative to the inside. She told me to expect 9 months to a YEAR before the inside of my breast is entirely normal. She said it's different for every woman, but she's seen a wide range and she wanted me to not be distressed if I still feel pain of any sort 4 months from now. So that was eye opening. She said radiation does a real number on our insides and so just try to understand this. WOW! It thought I'd pass this along to you all. I know we're all in different situations (some had total removal and some had lumpectomies, etc.) but still. She said to be gentle with myself. Well it was nice to be reminded. She then gave my OTHER breast an exam and I was like "you're not going to TOUCH my left breast like that, are you." LOL. She said no, but she had to do an exam of the one that hasn't been tortured.
anyway, thought I'd share about that inside-the-breast thing I learned yesterday. She was also very angry and upset that my insurer won't allow me to attend PT for my cording (which is still happening) and hand neuropathy and hand swelling - all a result of cancer treatment like node removal, etc. My oncologist wrote an appeal and they still said no. But she's going to have my breast surgeon write another appeal because when she examined me she was like "you need PT" and I explained how my insurer said no to multiple appeals and so anyway, they're going to try again from the point of view of the surgeon. Hopefully that will help? Insurers REALLY piss me off. I definitely was benefiting from that PT - and there was no need for it prior to my diagnosis and surgery. It's such a clear case of cancer treatment causing me problems, I am beside myself over this. Anyway, so I appreciated that appointment a lot. Even though I didn't even know why I was there! LOL
Love you all
Jen
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Jen - yes, 1 week and a day (I'm counting).
WTH is with your insurance?! I'm so sorry you're having to deal with that as well. Hopefully the referral from the BS will help.I've been so blessed with my insurance. I can't imagine how frustrating it must be especially when it's something directly related to your diagnosis. I wish I could be there to give you a hug. Sending one virtually though.
The RO told me the same that my "breast" will take about a year to recover, my PS explained that it why she can't do my next surgery until 6 months or a year after rads. Now with having to go on Xeloda, surgery in 6 months is def out the window! I'll be having surgies into 2023 from the looks of it. UGH!!!!! All this sucks!
I was told today I looked tired several times too and it didn't bother me at all. After reading your post, I started thinking and then it bothered me. It really is the only place we don't have to put on the brave face we do with the rest of the world. Seriously, I'm/We're in a this specific clinic/office/hospital, why would someone tell me I look tired?! ALERT!! RANT COMING...Of course I look tired, I AM tired. I'm hurting physically and emotionally. I don't get much sleep. I'm in treatment for this awful disease/beast, whatever you want to call it! My skin literally feels like it's on fire. I don't like the way I look. I feel fat and I don't like the way my hair looks! Why wouldn't I look tired? I know I look tired, thanks for pointing it out! RANT OVER! (sorry)
I taught my son and used to tell my students to always try and say something positive instead of saying the obvious. My son does this daily with me, lol, now that I think about it, it's kinda obvious that he sees I'm not feeling good or I look tired all the time. LOL Every once in a while he'll comment about my hair getting longer; such a sweetheart always trying to reassure me!
My grandmother and mother taught me from a young age to always look my best, even if feeling crappy. Even if it meant just putting on lipstick. My mom puts on her bright red lipstick and glittery eyeshadow to go to dialysis (well she did when I last saw her months ago). At one of her appointments, the nurse said "oh you look so good, so pretty" and mother's response was "well at least I can look good, even if I'm not well" or something to that effect. I tried to keep that mentality, but I found it exhausting. Plus, with having to wear masks, who was going to see my lipstick? Oh well...
On a positive note, I walked to the grocery store, felt good and gave me a sense of accomplishment; MO gave me the ok to go see my father. Praying I can go to PR for 4/5 days in the upcoming weeks. Going to wait until next week to see if my skin settles down before I buy airfare. And Tomorrow I get to stay in my pj's as long as I want, I have no appointments, no where that I have to be. I'll probably just watch Netflix or catch up on shows and lay around with Apollo all day.
Sending my love and hoping you all have a restful night.
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Ivy: I need to quote you here because this is PRECISELY how I feel: ".... It really is the only place we don't have to put on the brave face we do with the rest of the world. Seriously, I'm/We're in a this specific clinic/office/hospital, why would someone tell me I look tired?! .....Of course I look tired, I AM tired. I'm hurting physically and emotionally. I don't get much sleep. I'm in treatment for this awful disease/beast, whatever you want to call it! My skin literally feels like it's on fire. I don't like the way I look. I feel fat and I don't like the way my hair looks! Why wouldn't I look tired? I know I look tired, thanks for pointing it out! "
OMG. I read and re-read that. Yes. Yes YES YES YES. I feel EXACTLY the same way. My skin doesn't feel like it's on fire anymore (Thank God and I hope that is true for you by the end of next week too!), although it still looks crazy, and I don't like the way I look AT ALL. OMG. And I feel fat too! (I know it's a feeling and not necessarily a fact, but that feeling sucks and it just is a thing, isn't it) and I DEFINITELY don't like the way my hair looks (although, there is some hair coming in, so there's that LOLOL). Why wouldn't I look tired indeed. OMG you are SO RIGHT. Thank you. Ivy, your notes ALWAYS leave me feeling like I'm breathing oxygen, like someone out there gets it, like I'm not alone. I'm SO SO SO SO SO grateful.
I'm so excited for you that you walked to the grocery store and that this felt good to you. And I, too, hope you can go to PR in the coming weeks. And I hope today is EXCELLENT for you, at least in the sense that you don't have to go anywhere, do anything and you can watch fun shows and cuddle with your cutie pie doggy. We've been watching some good shows, and I don't know if you've seen any of them but here are a few: 1. The Good Place (omg so hilarious and crazy) 2. Ted Lasso (just love it) 3. The Goldbergs (middle class Jewish family that is so hilarious to me - but I'm Jewish so maybe that helps me because I can SO relate - I sometimes laugh so hard that I literally cannot breath) 4. Only Murders in the Building (it's a slow build but it's pretty good and funny - Steve Martin and Martin Short - both of them are killer hilarious people) 5. The Wonder Years (the new one - it's a reboot featuring a Black family and omg it is so beautifully done and stirring) 6. Survivor (ok, I admit it, we have watched about 7 seasons of survivor with our kids and I get so into it that I scream at the tv LOL)
Anyway, I'm sure you didn't need suggestions, but hey, why not share the shows we're having fun with? LOL
I will write more soon. I have to run. LOADS OF LOVE. I hope you have a cozy day and you're in my heart all day (all of you are!).
xo
Jen
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OMG! The track photo! Totally stole and sent to many in my circle.
I'm sorry people are commenting on how we look. Depleted, Tired, Puffy, Hairless, relating every cancer story they know. I wish there were a magical filter we could point to and turn on.
I find this forum and the zoom meetings the one place where we can be our authentic selves and not have to put on the brave face and comfort others about what we are facing. You all are amazing women and warriors.
Yesterday was my 4th treatment. The breast feels warm - but no redness or anything yet. Makes sense that this is from the inside out treatment because that is precisely what I'm feeling. Nice to have validation on that.
Wishing everyone a wonderful Wednesday! Keep up the fight!
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Jen - I have tons of shows to watch and I try to keep it for the weekends when I know I'm not going anywhere. I love the Goldbergs, such a funny show. I'm not Jewish, but it really does take me back to many things from the 80's. I love the reboot of the Wonder Years, so similar to the original but a different perspective, which I like. Haven't watched any of the other shows you mentioned. I have the Steve Martin and Martin Short show and The Good Place on my list. Could never get into Survivor because the bits I've seen here and there have critters that I cannot deal with, not even on TV, lol. I just finished Schitt's Creek, OMG, such a funny show (not kid friendly though as far language, some adult situations).
I'm glad you could relate to my post. I didn't want to sound whiny, but it's exactly how I felt yesterday. Why couldn't they say "oh, nice earrings," or "hey, cool mask."
It's a beautiful sunny day here, going to try and get another walk in at some point or might just stay in my "daytime" pj's and do nothing. We'll see.
Have a lovely day!
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Hi, Ivy: I am back and wanted to finish responding to your other note. Your Grandma and Mom sound so wonderful. You are so blessed. I didn't have a Mom that was there for me at all, so I really appreciate how much your Mom sounds like she loves you and how she does what she can do to get through hard situations - that's hard for sure - dialysis. OMG.
I do think that, if you feel up for dressing nicely or even doing one nice thing like lip gloss or something, that's so wonderful. That said, trying to keep up with "looking good" can be totally depleting and exhausting. I agree. At least for me. I had such a dysfunctional upbringing - and I was taught that it is more important to look good than anything else in the world. I was raised in Los Angeles - inside of the entertainment industry - where how you looked was everything - who you were and what you thought meant nothing. So as I grew older, I said to myself "I am never going to care about how I look when I grow up! I'm only going to care about who I am and who other people are on the inside." Now, here I am at 53, and I think that's a healthier approach than the way my parents saw things, but it is still too extreme LOL. At this stage of my life, I think - how we look on the outside doesn't matter one iota, yes. But caring for ourselves does matter. And if it makes us feel better, happier - even a tiny bit - then why not put on a nice outfit or if not that, some lip gloss or something. The truth is that, since my treatments started, I haven't felt an ounce of interest in doing any of that. And it's not a rebellion against my childhood nonsense, it is just that it has taken way too much energy (which I have so little of) to focus on my clothes/appearances. That said, today I took a dear neighbor (she is in her 70s) to a doc appointment (felt good to be able to help someone else for a change!) and I even put on a nice sweater instead of my typical oversized cozy sweatshirt. And when she saw me, she said "OMG! You have clothes that are nice!" LOLOLOLOL. I laughed SO hard - knowing my own history and she knows I've been super sick, etc. She knew I'd laugh - she wasn't being mean. She's a doll and I adore her. Anyway, it is really important, from my point of view, to care for ouyrselves gently and to only do what feels ok at the time. Yes, "thinking positive" matters, but in my mind, "positivity" - genuine positivity - is about acknowledging the complexity of life. Not just "looking at the bright side." or something like that.
Anyway, sending love! And I keep meaning to watch Schitt's Creek. That's on my list!
xooxxo
Jen
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I completely agree with you Jen on all of it! This beast has taken so much of my energy that I don't care how I dress or even want to put on a good face to go to the doctors, grocery store or anywhere. Why?! I don't wear makeup unless I have to, be it going out to dinner or special occasion. Yes, it's nice to feel and look good, but it is not all about looks.
My grandmother was an amazing woman! May she RIP.
Unfortunately, my mom and I have had a rough relationship my whole life. We haven't seen each other since June after I became fed up with being the one to do everything for her while my brothers both sat back and did nothing, one of them living down the block. Yet she always made sure to cook for them and fuss over them and with me it was always an argument, disagreement or something. I couldn't deal with it anymore, plus I was getting ready for my surgery and needed them to help out as I wouldn't be able to. She text me when she found out from my brother that I was dx'd again and was very mean, so I had to cut all contact with her in order for me to be able to through this awful experience without the added stress of the negative impact she has on me. My brothers don't speak to me either, and I'm ok with it. They're very selfish and only look out for themselves. I did treatment (and the pandemic) without them and had to do it again and I'm still here. This experiences have taught who my "family" really is. I come from a HUGE family and only one relative reaches out to me once in a while. When I say that I did this alone, I did this alone, with my son. I just feel terrible for him because it literally all fell on his lap. I have a few great neighbors that were always a call/text away if needed, so I'm very grateful for them as well.
That was very nice of you to help your neighbor. I can't wait to start being able to do things for others the way I used to. Almost there!!
You have to watch Schitt's Creek, it is funny!
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Serendipity - your comment about "looking tired" reminded me of this - When I started radiation, I was given a questionnaire, a depression screening tool. As a therapist, I knew that my answers were going to flag some reaction. So, A couple of weeks later, the social worker at the cancer center wanted to introduce herself. She said, "so on this questionnaire, you indicated your mood was depressed. What's going on?" I said, "well, I have cancer." I didn't know what else to say. Recently diagnosed with cancer, if I worry, have sad moods, trouble sleeping, low motivation, crying spells, etc. - doesn't that mean I am reacting the way people are expected to react?
Jen - thank you for your post. Yes, I've been feeling twinges and weird pains in my breast, that aren't skin-related. sometimes, out of nowhere, I sudden sharp pain, I assume from the radiation, even though it was finished a week ago.
Oh - I am also a big Survivor fan.
I am also still having irritation from the incisions, even though surgery was 2 months ago. I guess I have to adjust my expectations.
I start on Femara (letrozole) this week. Next week I get my covid booster shot, the week after I have to see a cardiologist. My life revolves around medical appointments.
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Tinkerbell - I raised all the red flags when I was dx'd last year. When the social worker came to see me at one of my chemo infusions, I laughed when she told me that based on my screening, which was done on the day I first met with my MO and BS, had an MRI and PET SCAN and met with genetic counselor, she was concerned with depression. My response...."Ummm, how could I not be sad? I'm sitting in a chair receiving chemo...alone, because there is a pandemic that does not allow for me to have anyone with me! I just lost all my hair and now I have to decide whether or not to amputate one breast or both. that screening was filled out at my first visit, how was I supposed to feel that day? How would you have felt?" She was taken aback and had a bit of an attitude. The next treatment two weeks later, another SW came in, it was someone I knew from my master's in counseling cohort. She chuckled and said, "it would be you!" because I was always challengeing our professors, I was the outspoken one but also the fun and funny one. We spoke, we laughed, I cried, she was empathetic and went on her merry way. She knew I wasn't suicidal and was dealing with the beast as best I could.
I swear after not having feeling my breast for over a year, it woke up! The zings are something else. I got cold last night and swear I felt like I could feel my nipple, LOL, I don't have any! Sympathy pains? Maybe. LOL Sorry if TMI.
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Ivy: No such thing as TMI in this group LOLOL! I think maybe that's a thing? When my hair fell out, for the first month or so, it felt to me as if I had it all pulled back into a very, very tight pony tail. No joke. Even when showering, I would reach up to feel my head to be 100% sure it was gone, as it literally felt THERE. Like for real? I think that's called "phantom" or something like that? Phantom hair? Phantom nipple? LOLOL!
And good for you and Tinkerbell. Seriously! Tinkerbell I laughed reading your description of how you responded to "what's going on?" OMG! Are people just dense? "I have cancer." LOL! OMG! I'm not clinically depressed at all (and it makes sense to me if someone does actually develop genuine depression during cancer treatments). But like you and Ivy and probably all of us, I've had days when I have wept, when I've been angry, when I've repressed it all just to function, I hardly sleep at all, etc. But I'm not "depressed." I just have cancer LOLOL!
And again, Ivy, I could have written this exact thing: "Ummm, how could I not be sad? I'm sitting in a chair receiving chemo...alone, because there is a pandemic that does not allow for me to have anyone with me! I just lost all my hair and now I have to decide whether or not to amputate one breast or both. that screening was filled out at my first visit, how was I supposed to feel that day? How would you have felt?" OmG I cannot stand that you got an attitude from that person. Seriously?!?!? People blow my mind!
And Ivy: I, too, come from a huge family. And I, too, have had to set very, very firm boundaries. I have one cousin I speak with - she, too, has had to set very firm boundaries because our family members on that side are mostly very mean, selfish, awful people. My Mom is so mean and awful. I think I've shared here before: she's got a personality disorder - which is a whole awful thing to deal with. I haven't seen or spoken with her in over 20 years and as I see it, I haven't "cut her off" as some people say - instead I've set healthy, firm boundaries - I only allow kind, respectful, loving people in my world - and really disordered people cannot/will not respect or acknowledge boundaries of any sort. Anyway, it breaks my heart that you've had to endure that treatment from your brothers and your Mom and I'm very impressed that - during a most terrifying and awful experience as cancer treatments/decisions, etc. - you managed to see with clarity that you needed to set firm boundaries and protect yourself. I see that as incredibly strong and it is brave, too. It's SO hard to hold those boundaries - and when you need support/love/help/kindness the most.
Andyes, when you say you did this alone, you really meant it. I'm sorry if you'd already shared this and I didn't remember. My only excuse here is chemo brain? In any case, I'm glad you have neighbors/friends and a loving son. But still, I hear you. Ugh, why even have kids if yoiu're going to be so horrible to them?? It makes me so angry for myself, for you, for all of those of us who have Moms and Dads who behave so selfishly and with such cruelty. Grrrr.Sending love.
Jen
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I can totally relate to all of you ladies. This whole cancer journey is an emotional ride. Some days I'm sad - not clinically depressed - just sad. Angry - why me? Why not the serial killers of the world? I can relate to the whole dysfunctional family. I have clear set boundaries like you too MaineJen. I have three sisters and none of them even know about my diagnosis. I have my immediate family my kids, grandkids and hubby, one aunt and one nephew that know. I plan to keep it that way. Can't afford drama and toxicity while fighting.
Today finished 7th radiation. So far skin is holding up. I am a bit tired, but that could also be due to the fact that now my husband is in dialysis and I have to drive him at 6pm and pickup after 10pm. Hoping at some point he will be well enough to drive himself, but until then we must protect others on the road.
I have a weird thing going on in my arm...I think it might be cording. I tried to google it and I think that's it. I have been doing my PT exercises, but what it looks like is a large vein or tendon coming out of my armpit - the other side doesn't have one.
Hope everyone has a terrific weekend, I think of you all often and appreciate you.
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Oh and thanks Mich 21 cute dog! I babysit the neighbors dog once and while and he looks similar. He is a westie who is all white. I have a puggle. I'll have to try those apple snacks. They look really tasty.
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MimiArmani: "Why not the serial killers of the world?" OMG I laughed reading that. That is so exactly a thought I've had! LOLOL!
Also: it sucks about your 3 sisters. It's painful stuff. I'm so sad you, too, have this experience/history. It is just terrible.
And yes, "can't afford drama and toxicity" - ever. Ever again, I think. Not just now. I think - well, we're all here probably thinking the same thing: who knows how long I've got. And seriously, I cannot afford one more second of that kind of drama and toxicity - the costs have been too high for me. I am just so sad that so many of us have had to deal with this sort of thing. And Mimi - you've got a lot on your plate. Driving and supporting and caring for your husband's health and safety on top of dealing with radiation, etc. Plus whatever is going on in your arm and just all of it. It can all be exhausting - physically and emotionally. Also: perhaps check with your surgeon's team about the thing in your armpit. It could be cording, which can be helped a lot by a good PT. Cording is related to removal of lymph nodes and/or radiation on lymph node areas (from what I think I understand) I'm still waiting to hear about our appeal to my insurer to let me go back to my PT for cording. In any case, PT care for cording is so helpful - if that's what it is. Whatever it is, probably a good thing to have the team eyeball it so you can get some help for it.
I'm so glad you've got 7 sessions behind you now! And a weekend off!
Thinking of you and of everyone here, with love.
Jen
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Mimi - how are you doing?!?!?
Ivy: updates? How are you doing?
Love you all.
Jen
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I don't start my first "real" radiation appt. until this next Thurs (had my planning appt last week and have simulation next Wed), but came one here to get some ideas for bras and YIKES! Worse than chemo?
Now I'm terrified of going through this. I seriously imagined that the worst part was over. Reading all this I almost wish now that I had opted for a mastectomy. I never knew radiation was so horrific.
I'm totally scared right now...
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Jen - I'm so much better then I was last week, thank goodness! Skin is healing well, peeling like crazy, but I'll take it. I'm still very red in certain areas where the new skin is coming in. Hope everything is good with you.You are in my thoughts and prayers that everything goes well on Friday. Much love being sent your way.
Macdebbie - don't be terrified, go in with a positive mind-set; we are here for you. Everyone responds differently, so you may not have the same degree of SE's as some of us did. We also have an October group where some are not experiencing rads the same way I did. It's all tolerable. There may be some discomfort, there may not be, and if there is, it is very temporary. The end goal is to get rid of this beast. I'm also Sending you positive vibes and hoping for minimal/no SE's for you.
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Macdebbie: I do think all of it is scary - all cancer treatments are daunting in different ways and they suck in different ways. As Ivy (Serendipity) says, everyone responds differently to every treatment. My experience with chemo was so awful - I'm 53 and I was in good shape (other than cancer LOL) and maybe because I hadn't had major health problems before, I experienced chemo as an ongoing nightmare. Or maybe it was one and anyone would have experienced it that way? But I have encountered people who found the same chemo treatment less horrific than I did. So who knows. We are all so different and our bodies are in different places and stages and so maybe it won't be as awful for you to go through radiation as it was for me and Ivy? I guess what I'm saying is - I'm sorry if reading our thread here scared you. We all started talking very openly and with a particular rawness that I think is rare and special - but also this means some of what people shared may sound terrifying.
This is a temporary experience, as Ivy said. So even if you're experiencing horrible side effects, it is temporary and big picture: for a good cause. As Ivy says "to get rid of this beast." I love how she says that. It resonates with me.Anyway, so sorry if reading our thread scared the daylights out of you. Just know we're all here for you and you'll get through it and maybe it won't be as awful for you - truly!
Jen
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