May 2018 Surgery Support Group
Comments
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ReadyAbout, so sorry for your ordeal! Hope the infection clears up soon. We wouldn’t want you to miss your colonoscopy
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I too am ultra emotional through all this.
ReadyAbout: I am soooo sorry!!! You have one thing after another! I hope this infection clears up quickly.
Inna: I am very sorry to hear about your back surgery. I am also amazed how well you bounced back after your BMX. I am still in great pain daily two months post my surgery. I take muscle relaxers and oxycodone daily. The pain dictates much of my life. I am sitting here now, trying to breathe through the pain as I type this. I wish my recovery was as quick as yours!
Bennybear: I am dealing with that very thing tonight, Will I ever have my life back again? It has me very depressed. My friends are great and invite me places all the time. All I want to do is get through a few hours of work, go home, take my pain killers and go to bed. If it’s not the fatigue, it’s the pain, or pain med side effects, or emotional weepy moods. I feel like a mess. I am sorry you are feeling in a similar way.
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So many different experiences, yet we all still have so much in common. I'm feeling the emotional effects, but not like most others. I feel numb a lot, but lately I've just been plain mean. I don't know what's going on, and the only thing I can think of is that it is the Tamoxifen. I've been battling nausea for three days now, but still trying to keep busy and spend time out with family. My nephews are in from out of town, and since my brother passed away, I cherish the time I can have them here. I have been running myself ragged doing things with them this week, so some of my grumpiness may be exhaustion. I just don't really like this hateful person I've become. I've never been this way. Sure I've had moments, and when I haven't eaten, I turn into a monster (happened today), but I am normally the most easy going gal on the planet. I'm also anxious about my fill tomorrow and when to stop. I find myself anxious about a lot of things these days. Most of all I'm worried about this mean woman I'm becoming and that my family will hate me for the next 10 years. 🙁
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blessedinthismess- I totally agree. I am much more short tempered and grumpy. Unfortunately my husband and mother get the “tamox” wraith. I can hide it from everyone else. I hope it becomes better over time. I am just not the happy person I use to be. I really feel sorry for my husband, who has been incredibly supportive
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FaithsMama, have you talked to your doctor about the pain? My surgeon said that since the nerves are cut, the pain should not be severe, and she was right about it. I have five friends who went through double mastectomies with TE type reconstruction and they all had experience similar to mine. I wonder what your doctors are thinking aboutyour constant pain.
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ReadyAbout: any improvement on the infection?
BennyBear: I would assume I can self refer or at least advocate stronger for PT, it just seems so hard to navigate uncharted territory when not feeling my physical or emotional self. One day when this is behind me I have been thinking about constructing some sort of resource guide for local contacts for all things post mastectomy: therapists, pt specializing in this, etc. I have had a couple local organizations gift me with lovely, caring things since my diagnosis, like seatbelt pillow, hats, etc, but they have not included something like I mentioned above which I would find invaluable currently.
Praying that everyone finds a peaceful and pain free moment sometime today.
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faiths mama. Hope you feel better soon! It is such an overwhelming experience. For me it is different each day.
SPD girl, wow I get it. We just need someone to help navigate all this. I was lucky my nurse navigator had given me some info on physical therapy, and that it is part of my treatment. I am sorry it is not as easy for you. I totally understand the need to have this made as simple as possible at such a crazy time.
I had this exact conversation yesterday, about things I wish I knew. I think someone needs to tell people to get a post surgical camisole prior to surgery, the last thing I wanted todo was to go out with my drains and buy one. I read somewhere that one hospital provides them, what a great idea. Also something to hang the drains on in the shower, i used oxygen tubing from the hospital.
So good for you thinking of this for others.
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ladies, I am having my surgery on July 18th. Dye injection and radioactive seed injections are freaking me out. Having breast pressed while they inject me is beyond my imagination. I take cortisone injections in my short with no problem -- doc is amazed. But this is unimaginable. Help? Anyone care to share your experience? Calming words?
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SPDgirl: some states let you do a certain number of PT visits without a referral. In TN where I live, it’s 15 visits. Definitely push for seeing a PT- they are so helpful!
FaithsMama: I am so sorry you continue to have chronic pain. I know it probably consumes much of your waking thoughts. Have you seen a PT yet? They may be able to help with any tightness. What does your dr say?
I get to skip the colonoscopy tomorrow because I’m in the hospital getting a boatload of IV antibiotics. My infected foob was more swollen today so PS made me go to hospital. Apparently it’s called cellutitis and it can get bad if not treated early. Blazing a trail through Netflix over here...
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yikes ready about! Hope you feel better soon.
One of 7. I have done dye injections twice. It is not fun but over quickly like a sting. You will be fine. Hugs, one step at a time!
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FaithsMama: Netflix is a good thing to be doing. I hope your stay is short.
I had my 3rd fill yesterday. It was not as bad as thought it would be. But i still have plenty of room in what I refer to as my empty ravioli shells that are sitting on my chest.
My pain is mostly from the nerve issue in my arm caused by the On-Q pain pump used during and after surgery. No one seems to know what to do about it.
My emotions have been all over the place. Up, down. But it does seem that when I have a good cry it helps. So I save the ugly cry's for when no one is around.
My wounds are healing but I am still sleeping in the recliner.
Taking the hormone (Anastrozole) has been good except I started having nightmares. I figured out the taking Melatona and my hormone drug do not mix.
About back surgery vs BMX. I have had both. I had better drugs with the back surgery was allowed to stay in the hospital for 5 days and went home with good drugs. It was many years ago and I was much younger. This is worse. The back surgery, the doctor made the choice that I have it. As I did not have feeling from my waist down. I still suffer some from some pain and my bladder does not always work right. I have also passed kidney stones and have had kidney surgery. It was a breeze compared to the BMX. I have also had my right ankle and leg reconstructed with 13 screws and a 6 inch pin. The pain of impact was worse. I remember sitting in the shower and crying every day that I couldn't do it anymore. Not from the pain as much as living in a 3 story house with 2 small children, an abusive husband and told that I could not put any weight on the leg for 8 weeks. I had to move up and down my stairs on my butt as my hubby would not install stair-rails.
My leg has healed and I even had a 2nd surgery 8 months later to remove the pin and screws as I am allergic to all metals including titanium. It has been 20 plus years. And still having issue with the bladder.
Emotionally the broken leg was worse because of the background crap. The back surgery the same because of the background stuff. both of these surgeries were approximately one year apart.
When I was told I had breast cancer I told myself that "compared to all of the above I've got this". The husband I have now is sweet, patient and very concerned about taking care of me.
I don't even know if truly you can compare one illness or surgery over another. They are all different. I believe that this will be a blimp on my radar screen and I will move on with a story to tell. I am a survivor and believe that "this too will pass."
A funny story. I am planning on going up to Maryland to have Vinnie Myers do my tattoo nipples. My daughter told my son of my plans and he is freaking out that his old mom is going to get a tattoo and used CBD by vaping for the pain in the early stages of recovery. My daughters answer to his freaking was to say, "she has had cancer and could maybe die she can do whatever she wants to make it better." Of course, I am going to die but not from breast cancer as my outlook is so wonderful. These are my bio children. We have been through thick and thin together.
I pray for each of you in your own journey of this thing we call our new normal.
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kandyhunt, I'm sorry that you've been through so much but it's great that you've got so much perseverance and a caring husband now. I too am suffering from nerve pain. Have you seen the topic: 'Hypersensitive skin/nerves after Mastectomy'? I hope the doctors will figure out how to help you. https://community.breastcancer.org/forum/91/topics/860079?page=3#idx_68
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ReadyAbout: I am so sorry to hear that you have to be hospitalized, but glad the doctors are on top of that. How are you feeling today? I feel like I have watched more TV in the last 2 months than I have in my entire life! I just finished The Paradise on Netflix
Oneof7: You can do this! Praying for you!
KandyHunt: so glad you have such a great support system for this. I too am still in the recliner. I think I could make it back in the bed, but I like being cacooned in my own little nest. I think it is a bit like a security blanket for me right now.
Tomorrow i am headed to the hospital for a blood draw. After reviewing my sister's medical records (she has had 2 DVT's and PE's), my MO wants to run some tests to see if Tamoxofin is the right choice for me after all.
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Kandyhunt, I live in Maryland and Vinnie the tattoo guy is a legend around here. Im 45 minutes from Baltimore so I'll be visiting him myself next summer.
I met with my PS today and my exchange is still set for July 25. We chose implants and discussed fat grafting to help fill me out. She's going to try but I don't have a ton (can't believe I'm saying this but I'd love to have more, I've got plenty of friends who offered to be my donor. Lol!). I'm nervous about the final product but anxious to get the expanders out.
And yes, I cannot say enough about the benefits of PT. In a week and a half I've regained almost full motion on my right side. My left side is still a mess and much stiffer and more painful but the stretching has helped so much. My back still hurts but the intense pain has passed. Finally thinking I turned a corner.
To those of you dealing with pain and infections, I'm thinking of you. This is certainly not an easy road.
Oh Oneof7- I read horror stories about the dye injection and I can tell you it wasn't bad at all for me. A quick sting or pinch is how I'd describe it. They had numbing solution mixed in with the dye so that helped I'm sure..
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Hi ladies! It’s been a while since I posted but I wanted to do a quick hello! I’ve read all your posts and I feel so grateful that my trip down this path has been a lot less eventful than some of yours. I definitely don’t sweat the small stuff anymore because things could always be worse! I applaud all of your spirits and determination and I do not take any part of my uncomplicated recovery for granted.
I went back to work finally on Thursday. I work at a bank so nothing strenuous by any means but I do use my arms all day to print and process deposits, etc. of course I use my lymph node arm the most because of how equipment is set up. After two days if feels like I have a huge bruise on the underside of my arm. Not sure if it’s related to lymph node removal or just unused muscles for 8 weeks, but I’m trying to force myself to awkwardly use my right arm instead for now. I also am super aware of my TE’s after the past two days. They are prepectoral so again not sure if it’s because this last fill finally bothered me or again not using the muscles for 8 weeks. I don’t go back to the plastic surgeon for two weeks so hopefully I can stand them that long! I’m only up to 225cc but may make her take some out! Also i’m super jealous of those who have their exchanges scheduled! My ps won’t do it until at least 3 months from my original surgery so that would be August 21. Due to scheduling issues if she can’t fit me in those last 10 days of August I’ll have to wait until October
On a random side note...two years ago today I went into labor with my baby girl!! She turns two tomorrow at 434am!! She’s my world and has given me the strength to fight this beast the best I can!
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SLL. I can't imagine going through this and having a small child. We adopted a teenage boy in May. And all our other children are in their 30's and one in her 40's. You must be very young. At 60, I feel like this is just part of getting old. LOL I went back to work half days this past week and typing is a bear. I worked as a teller for years putting my first husband through college. It is tough work standing all day and moving around and using your arms.
SPD. I hear you about Netflix. Loved The Paradise. I wanted to read while I was down and out but it appears my attention span is about 5 minutes.
Readyabout. Let us know how you are feeling and how the infection is going, hopefully away.
Had a melt down earlier today. Over the dumbest thing. Mostly over the fact that I can't do what I want to do when I want to do it. My 6 weeks were up,so was going to soak in my big garden tub. The maid was just here and for whatever reason she decided not to clean it. I was crying and my hubby took pity and cleaned it out. The soak went ok but the water didn't get hot enough. Such a stupid reason to cry. Then when I stepped in the shower I managed to get a sprayer to hit the ceiling rather than me. Just had to get out. And cried again. I usually don't cry like this. So crazy journey.
Sending prayers for all of you.
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hi all!
Wanted to pop in and say hello also and I’m sorry to the ladies dealing with pain, both emotional and physical. Ready, I’m sending some healing vibes your way my dear, hoping that infection clears up soon! Both my surgeons told me it takes most women about one year to feel like themselves again, and I think given everything we’ve all been through that sounds pretty spot on to me.
I just got back from FL with my family and while it was very relaxing, I couldn’t get in the water at all. My PS says 12 weeks, strict! I guess there is still a risk of infection even though my incisions look completely healed to me. SLL your daughter is a doll! Happy birthday to her! What an angel! We just celebrated my 4 year olds bday today at a rock climbing gym, my two year olds will be in sept. So happy I can lift them again! I moved my exchange out until September 18, we are planning to be in Mexico at the end of August and I want to be able to get in the water and swim with my kids.
My family and I last week at the beach. Certainly the reason I put myself through all this. Wishing you all a great weekend
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SLL - Happy Birthday to your little one. She is a cutie pie!!!!
KandyHunt - I know! So funny. I had stacks of magazines and books ready for this summer and I have barely opened one. TV and app games have been my surprising outlets.
Michi - So great to hear and see an update! You have a beautiful family. I am glad things are going so well!
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kandyhunt- yes I’m young, 33! Only person in my family that had breast cancer was my paternal grandmother, and she was well into her 60’s when it happened. I tested negative for any known genetic mutations so I’m either a mutation carrier that they haven’t discoverd yet or just one of those rare cases of young cancer. Also my family tree is pretty much missing a whole generation of women. My dad has one twin brother, and my mom has 5 brothers. All my aunts are married into the family! So unfortunately there isn’t much info or patterns in the family to follow, but I do know my sister and female cousins are going to by super vigilant about their own health! (Wish I could say I’m the youngest person I know whose been through this but my dental hygenist was diagnosed at 28! She is now 16 years Ned with two beautiful children!)
And thank you everyone for the comments on my baby girl! She is just the light of my life!!
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Mich: What a beautiful family you have!! It's so nice to put a face on the profile we are communicating with.:D
Spdgirl: I hope you get the correct hormone therapy worked out. I still haven't started mine. I am putting it off, until, maybe never.
SLL: Your little girl is ADORABLE!!! Happy birthday to her! My PS won't due to my exchange until September! I wish it were sooner as well. I don't know how much of this chest pressure we feel actually goes away after the exchange. Hopefully, MOST of it!
ReadAbout: How are you doing?? I am just so sorry you are dealing with so much!!
KandyHut: My emotions are all over the place!! This is such a challenging journey we are on. I am glad you have the support of your husband. I hope you are feeling better! I wish I could do Netflix! The TV in my room broke this week! Although I have cable and can watch plenty in my living room, when it's not in use by my sister, or mother, or niece.
ljm: Your exchange is coming up!! I am excited for you! I'll be doing fat grafting when I have mine. I have PLENTY to spare!! Guess this is one time, I am grateful for my fat!
I think this would be so much easier for me if I didn't have so many other extenuating things going on in my life at the same time. DJ, my friend, who I've mentioned before, was living with me, AND working for me. We became very close, and he has become resentful of the fact that he has depended on me, and needed me and the consequent emotional ties that bound us because of all these overlapping relationship issues. He moved out today. He says into a motel. Though I sense he is seeing someone and may be moving in with her, idk. I don't get a lot of information from him anymore. I don't even ask anymore. The fact that I am his employer complicates things even more. We HAVE to work together, I have no choice. Unless I let him go. Which I won't do. He does a GREAT job at my business and would be very difficult to replace. Nonetheless, the emotional roller coaster he keeps me on, makes my life difficult. Dealing with cancer, love, heartbreak, dating(lack thereof), trying to feel attractive and like "dating material" while being 53, with a msx, and recovering from breast cancer, and keeping my relationship with DJ going smoothly, is more than I care to take on most days. That and contemplating moving out and getting my own place. (I live with my mother, sister and her two children) to help share expenses. Breast cancer has made me rethink if I want to continue living in this situation. I feel like I have one last chance to get the life I want, or settle for the life I have. Or, maybe not settle, but accept, for better or worse, this is my life.
Thank you for sharing this journey with me. I am sorry to vent too much. This is one place, I can kinda get these thoughts out that relate to how cancer is affecting my entire life.
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Kandyhunt, please be kind to yourself if you have meltdowns. You've been through a lot physically and emotionally so it's understandable to have emotions to express at times.
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FaithsMama, thank you for sharing how cancer is affecting your entire life. I'm sorry you're going through relationship struggles and so much else and I hope you can get the life that you want. I feel for you.
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thanks Faithsmama-
I can tell you, going through all of that while dealing with cancer and this surgery, you deserve a gold medal. If I lived closer I’d at least buy you a strong drink! Lol
It was a long several months for me as well emotionally and physically, but the emotional part was the worst and complicated by the fact my husband was kinda a pain in the ass during all this. We’ve since then talked through it which has made me feel 1000% better. I’m sorry you guys have to work together, I too am a small business owner so I know how employee relationships can be complicated, maybe if you guys can talk through it once and try and put it behind you, you can move on and have some closure. I agree about living your best life, I think having a scare like this makes everyone stop and think about what’s really important. Do what makes you happy, and if you aren’t sure what that is at the moment at least put yourself first, because right now you deserve that!
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I'm so glad I'm not alone! I have been easily brought to tears and especially in the radiation room. They want me to go on antidepressants. I feel like I should go on them for other people. I too am used to being in charge, especially of myself. I am sleeping well 8p-6a, eating, find some humor, don't have energy for cleaning and cooking much. I think the tears come from not being able to keep up as before and fears of the future which I can't control. I'm reading on mindful meditation. Also the flow of treatment keeps going even when you are not recovered from the last. Big chemo, surgery, radiation and continued Herceptin. Then there are the souvenirs -peripheral neuropathy, memory problems, arm and breast numbness, bald head.
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BAZelda, I hope that you can be kind to yourself in the midst of your tears and not being able to keep up as you used to. Please only go on antidepressants if it's right for YOU. You have been through and are continuing to go through a lot, so it's normal to be struggling with all the treatments and side effects. I feel for you and I hope things go well for you.
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- SLL - it sounds like we have similar genetic situations, although I am much older than you! I am turning 46 in Sept. The only person in my family that had breast cancer was also my paternal grandmother, but in her 40's, which is what prompted me to pursue genetic testing several years ago and then again this year after diagnosis and both times I have been free of any genetic markers. We are also missing a generation or more of females. My dad and mom each had 2 brothers and no sisters. Of all the uncles' children, there are 4 boys and 1 girl. I have a sister and a brother. My children are adopted and my siblings children equal 4 boys and 2 girls.
- FaithsMama - I'm sorry that there is so much 🙁 I am praying that circumstances will make it clear on what to do with DJ, your living situation, and the potential hormone therapy. I keep wanting to tell the world that they must have forgotten to read the memo saying that things are supposed to remain the same until I am feeling better and ready for life to go on as normal!
- BAZelda - I agree that you should do what feels right for you, but it seems unfair that we need to keep trying to make big medical decisions when neither our bodies or our minds are feeling up to par!
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Michi and SLL: I LOVE the photos of your gorgeous daughters! Makes me miss the days when my girls were that age - they are teens and a little averse to cuddling, lol.
FaithsMama: you are juggling A LOT. You should be really proud of yourself for having come this far and also for dealing with so many issues at once. I hope things improve SOON!
I got paroled from the hospital yesterday, just in time to go to a concert last night! My closest college friends had all come to town for it, and it was such a gift to be able to join them. I'm not out of the woods yet with this left foob - taking two antibiotics and checking in weekly with the doctor. If it doesn't heal 100% when I'm done with antibiotics, I'll have to get the expander taken out and he'll put in an "antibiotic plate" and a new expander ON BOTH SIDES. Ugh. Fingers crossed and prayers lifted it doesn't come to that. Also, only having one arm as a viable option for blood draws and IV tubes is really hard! My right arm was a pin cushion by the time I left.
On a bright note, friends took time to visit with me while I was in the hospital so I had a steady stream of people to talk to and had some great conversations. I was mildly concerned about keeping up my streak of drinking one different craft beer every night this summer, so one of my friends snuck in a cold IPA for me. Good times!
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ready - you are a soldier! I do appreciate your upbeat posts and am so sorry that all these unexpected events keep stepping in to interrupt your progress. Love to hear of the great support system you have. P.S. my kids a really grown -- 21 and 24. My stepdaughter is 39 and has 3 kids. My beautiful grandchildren.
Bzelda. Crying is a natural reaction to this very trying challenge. It is not a sign of weakness. I've read that the most difficult step can be relinquishing oneself to the status of patient. I know I struggle with that. I never sit on the exam table until I'm told to. And then I get down asap. 🙄 if you need antianxiety meds allow yourself to give it a try. I'm taking them and they really help. I take a Xanax at bedtime and I sleep sooo well. Best medicine of all -- sleep.
Michi and sll. Beautiful families. Your pics really personalized this space. A welcome reprieve.
Faithsmoms. Hoping things on the homefront improve. It seems almost "out of body" how the world keeps chugging along at the same pace when things need To pause for us to get through this.
and to everyone here - I wish you all a very good day tomorrow. One day at a time
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Ready, great to hear an update. Dying laughing re: your craft beer fix. Your friends seem like my kinda people 😂👌🏻🍻 sending more healing vibes your way. Ps- I’ve got several Crunchy hippie friends Who swear by fresh pineapple for healing purposes and to fight infection..,though I don’t always buy into it I ate it religiously before my surgery and feel like I healed pretty well 🤷🏻♀️ Maybe worth a shot?
BAZelda and One of 7, big believer in sleep is the best medicine also. I have several friends not battling cancer but who have other issues with anxiety and depression and swear by Xanax, I think especially during a time like this it can be helpful so you can be more present for day to day and more relaxed during treatment It’s not something you need to commit to long-term but I kind of feel like it’s there when you need it and maybe worth a shot to get through a really difficult time.
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spdgirl- you said you’ve had genetic testing done a couple of times. Prior to being diagnosed or after? If it was before did you have to pay out of pocket for it? Sorry for the nosey questions but I know my 32 year old sister is now anxious for herself seeing what I’ve gone through the past 3 months. I think it would give her some peace of mind if she had the genetic testing done, but I’ve heard it can cost like $5000!? Not in a teachers budget!! She’s already said she would do a BMX like I did before having to worry about cancer too!
As far as emotions go I am still a total wreck! I don’t feel depressed but I can cry at the drop of a hat! Over anything!! Song on the radio, my baby, dropping the same thing over and over, etc! I talked to someone who went through this 3 years ago and she even said she can cry at any given moment. It’s traumatizing what we all have been though, continue to go through and will go through in the future! Let yourself feel those things too!
Michi & ready- I’ve heard pineapple is great for healing! I did not eat it with my first surgery (makes my mouth itch!) but I still healed well and fast. I would absolutely eat it if I thought it would help me, it’s not going to hurt that’s for sure!! And I may try and get some in my diet for my next surgery.
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