May 2018 Surgery Support Group
Comments
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Mich & SLL: I know EXACTLY what you mean! Some of my difficulty and pain during this experience has been with my friend "DJ" who lives with me, and he and have a very close relationship. I have been there for him in so many ways, so many times. The reason he lives with me is because he became homeless after a divorce, and went into a recovery program for alcohol. I had higher expectations for how he would be there for me during this cancer diagnosis similar to how I've been there for him during his divorce and recovery. Yet, he has been more MIA during this time than ever before. I think you all hit it right on the nail when you say, men are fixers. Since they can't fix this, they feel their hands are tied and they feel helpless. He expressed to me that he is afraid of losing me, more than anything else, so he avoids me as a way not to have to think about me and my illness. But, it is very hurtful, because more than anything I just want his company through all this. I am tied at home in pain, he's out having the time of his life. It's very hurtful. I am sorry your dh isn't there for you in a way that you need them to be. We ARE the stronger sex, no doubt about it!!
I tried the marijuana/cbd chocolate squares today for the pain. It DOES work. Though I am still very nervous about using it, how much to use, how often to use it, can I use my muscle relaxers with it?
The pain and tightness that you are all describing is what we are ALL dealing with it seems like.
Hikinglady: Like you, I think the combo of the muscle relaxers with the oxycodone is what works best for me.
SPDgirl: I am with you. It's all getting to me too. The tightness is just so overwhelmingly exhausting! Kudos on getting your pits shaved! That's a feat, I know! I am sorry you are having a tough time. I am sorry about the passing of your cat as well. ((hugs)). I have 7 dogs in my household. 3 belong to me. 4 belong to my sister. I live with my sister, her son and daughter (my niece and nephew), my mother and my friend DJ, who I've mentioned a few times. And our collective 7 dogs!! Yes, it's a busy household! I have a doggy daycare so many of them spend their days at the doggy daycare. All 7 are there today because we are celebrating my nieces birthday and don't want the dogs in the way.
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Thank you ladies again! You all always make things a little better when you share you are experiencing similar things!
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my drains are all out but I am leaking from the last one. Every night in the middle of the night to being wet. I am in low grade pain all the time. I am so sick of being sick. But I have such a good report. No more cancer. No chemo. No radiation. All I have to do is recover. My husband is being so nice. At first he was freaked out. But now he is just wanting me to get better. Tylenol and Advil are not enough to cut the pain but that's all I have. I feel guilty that I am not up to going back to work. I have plenty of time off available but my big boss keeps sending me emails that only I know the answers to which I don't because I've been out for 3 weeks. I've taken phone calls, signed checks, did payroll, signed a contract. So I haven't exactly been not available.
I say all this because I know I will get better but the process sucks.
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kandyhunt - I get it and it is so frustrating. I think it would go a long way if we all could not feel guilty about whatever stage we are in, but I do it constantly as well. I have a friend that often talks about needing a Guilt- Be-Gone spray 😀
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SPDgirl- I hear you about the tightness around the top of the chest- it still comes and goes, even with exercise. I will say that for anyone who is experiencing that sensation I would highly recommend getting a referral for a PT!!! I went to my first real session last week (the one before was more of a conversation and initial review) and she did some manual muscle manipulation on me that made a huge difference on my range of motion right away and felt really good! I'm dealing with the effects of daily radiation on my right side right now, so for every step forward the radiation seems to be pushing back, but I would think that if I wasn't in this state the manipulation would be really effective! She also gave me advice that no one else has regarding the use of a compression cami to help with some of the swelling I am experiencing (both in the front and under my arms).
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Well the wound opened up over the weekend on the cancer side after not healing for a month. My surgeon went on vacation so I spent the day waiting around in emergency where the doctor looked at it and agreed the tissue was dead and the wound should be cleaned up. That's all he did before sending me home with a suggestion to call a surgeon.
The surgeon they suggested can only look at me on Thursday. And that's all he'll do on that visit before he decides what else to do.
I live 15 miles out of town and am spending a fortune in gas yo see doctors who look at it and do nothing else.
So far it's not infected, just oozing bloody serum and that goddam blue dye, same as it's been doing for the past month. I'm spending a fortune in dressings and tape and it still stains my clothes.
I'd rather have the goddam cancer back than die of some flesh eating bacteria by the time someone gets around to doing more than looking at my wound and aggreeing something should be done about it.
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Faster: I am so, so sorry you are going through this. When something this ridiculous happens, my husband always says (sarcastically) "And yet we supposedly have the best healthcare in the world." When you meet with the doctor on Thursday, you may want to ask him to give you a supply of dressings to last you until the next appointment and if there's a way to apply a dressing that works better. When my tissue wasn't healing, I had to visit a wound doctor while doing the hyperbaric sessions. She ended up ordering a special dressing called a Sorbact gel dressing - it was a mesh strip designed for infected wounds. Here is a link for it. My insurance had to approve it so maybe it's expensive, but it's worth a shot. I would put this on every 2 days and a giant square bandaid over it. https://www.bsnmedical.com/products/wound-care-vascular/category-product-search/advanced-wound-care/wound-bed-preparation/cutimedr-sorbactr.html
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I can't tell you how frustrating it is to spend a day in emergency only to be told by the ER doctor that I should get a doctor to look at it. And that he found one who could look at it several days from now. I asked him why he wasted my time and he said he was sorry I felt that way.
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SPD-- Guilt Be Gone spray would be great. We should invent it and make some money for research on how to treat BC without having to cut off parts of our body. I tell people including my doctors that if men were told to cut off part of their bodies to "heal", there would be a cure.
Faster- I am so sorry you are having such horrible treatment. I live in the suburbs and my doctors are all downtown. It takes about 45 minutes to an hour to drive there and about 15 minutes to find a parking spot in the parking garage. I try to plan. But it is big cancer center so I am lucky that way. Is it your breat surgeon on vacation or the plastic surgeon? And even their whole office is closed? Don't they have another doctor taking their patients. After calling their service you don't get another person that can recommend a calleague. My plastic surgeon gave me his cell phone to use at night if I need him. I wish you lived near me so I could help. I will keep you in my prayers.
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breast surgeon is on vacation, her office said I could see her colleague 50 miles away or go to local ER so I went to ER. Wait hours for doc to see me and all he did was tell me I should get it looked at by a doctor. I thought that's what I was doing duh.
I don't have a plastic surgeon. No reconstruction so why bother i'm staying flat. No cancer causing fat bags or fake implants with no feeling the very idea of living with fake numb foobs just grosses me out.
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Juat got back from the plastic surgeon and she took the air out of my expanders and put in saline. The removal part was strange, and probably the most uncomfortable part of this whole expander experience so far. She removed 175cc or air and I now have 125cc of saline and they actually look larger. I’m going to try and do two more fills and get to 200cc as long as it is not too uncomfortable. I did ask about a time frame for exchange surgery and she said the expanders next need to stay in for three months. So hopefully surgery late August! How’s everyone else’s expanders journey going
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So I went for what I thought would be my last fill today and my PS wouldn't do it. She said my skin was as stretched as it would go and strongly recommended going any more. So I guess I'm done. I'm at 330 cc and was hoping to get to 400. I really wanted to be a B/C cup but it looks like I'll be a small B just like before. She had warned me if I don't do nipple sparing surgery, it would limit the skin she had to work with. But my BS said don't save the nipples since I had so much DCIS so it was an easy decision. But I have to admit - I go through all this and was looking forward to being a little bigger and nope- not gonna happen.
On a side note my PS is changing practices so she wants to do my exchange in 5 weeks. I'm a little concerned because she originally said the expanders should stay in 8 weeks post expansions. Now I'm worried she's rushing me along. Especially after reading SLL is doing a late August surgery which was my original plan.
Faster, I hope you are able to get better treatment soon.
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ljm33- maybe try and get in to see another plastic surgeon ASAP for a second opinion before your current surgeon leaves? As if you need one more thing to stress and worry about! So frustrating! Good luck!
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Faster: I am so sorry to hear about your time at the ER and the lack of any help coming from it. How is today?
Ljm33: 🙁 that is very frustrating
Praying for some encouragement for everyone today!
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Update:
Called a bunch of surgeons more or less in the area. Nobody will see me - I'm not their patient, they don't take obamacare (well f me for being poor).
Made an appointment with my pc doctor for today. Maybe he can tell me at least how to avoid infecection / wound care etc.
Called the hospital ombudsman to ask why they didn't actually treat the wound and just sent me to yet another doctor. She said she'd register a complaint and hsve it looked into.
Called my surgeon again, somehow got someone in IT by mistake. She passed a message to the nurse who of course did not call back.
Called my patient navigator at Blue Shield, explained everything that happened. She called my surgeon's office as that's the only way I ever seem to hear back from them.
Surgeon's office called back, talked about how great this on-call surgeon is bla bla bla, I said I have had enough of people looking at it, they need to TREAT this and quit the runaround, and I didn't survive breast cancer just to die from a stupid infection while they all sit around doing nothing.
I have a DEXA scan in town today to see just how bad the Femara I started on last week is going to f up my bones, then my own MD right after.
Massive hot flashes and yay carpal tunnel now, prob from the femara. Is it worth the remote chance of recurrence to be crippled by this shit?
Planning more substance abuse today to avoid self harming.
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faster- are you taking any antibiotics? I wonder if the hospital would at least give you that to prevent infection.. sorry you’re going through such an experience. Our health care system is a real gem isn’t it?
SLL- I’m booked for August 21st, and have a wedding in Mexico 1.5 weeks after that! Yikes! I’m the maid of honor in the wedding so unfortunately I can’t miss it and the next available time my surgeon had was mid October, so hoping it’s easy on me. Everyone has assured me the exchange is a piece of cake in comparison. But let’s see. I’m betting you won’t have as much pain as I had with my two fills since you previously had air to stretch you out. I’m no longer in any pain so to speak, (other than first thing in the morning) but they certainly feel heavy still, so that might be a new feeling for you.
Ljm- my surgeon has a three month rule for doing an exchange surgery but she said that only has to do with putting me under general twice unnecessarily in less than three months, and nothing to do with the expanders..I actually tried to get her to do the exchange at the start of August so I would have more time to heal for this wedding and she adamantly refused, even when I offered to sign a waiver about the anesthesia. She said it’s purely since in her opinion it’s hard on the body. she did mention some other surgeons do the exchange as soon as 8 weeks after and it depends on their practice policy.
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Michi primary doc prescribed levaquin today, just took the first one.
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Anyone still have lifting restrictions? My plastic surgeon has been good about telling me what I can and can’t do but she didn’t meantionit at all (and I forget or ask!) this last appointment. I was 5 weeks post surgery on Monday. If I could just lift my daughter it would make things much easier!
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Hi, guys. Something funny for your entertainment. My first experiment with English poetry:
Ode to my hair
My hair is gone. I have no hair.
It wasn't much, but it was there.
A modest mop right on the top
To keep me safe from heat and cold.
I didn't like it. It was flat,
It looked horrendous under a hat,
But it was mine. And now it's gone
To rest in peace while I go on.
I lost too much in this long fight
But I'll keep on with all my might,
I'll soldier on, I'll overcome,
And at the end I will become
A mix of someone old and new,
With a few parts borrowed and a little blue,
And a fledgling brand-new hair crop.
A light peach fuzz right on the top.
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SLL-
Mine told me 6 weeks before I could pick up my daughter. Her little hand out she sent me home with said something crazy like 12 weeks before I could lift 30 lbs (daughter is around 27 lbs). I’m going to pretend I didn’t see that hand out and go with 6 weeks because it’s killing me not to be able to lift her and I feel healed enough to do so. I assume the lifting restrictions have more to do with ripping incisions anyways, but maybe there’s more to it? I’d be curious what everyone elses said as well.
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SLL - I'll be five weeks out this Friday and I'm still only at two pounds lifting. Plus my PS still hasn't given me the go ahead for arm exercises. I'm hoping he lets me after my next fill this Friday. He's supposed to add another 100cc which will put me at 550. I'm looking to get to 800. I'm not looking forward to this one!
Anyone still have days where they are completely exhausted? I'm an on the go person and always doing ten things at once but I'm no where near full capacity both mentally and physically. I'd say I'm about 65%. When does it get better?
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sn75, I am 9 weeks post BMX, and I have to tell you, I feel pretty much normal. I walk at least 5 miles a day, exercise on elliptical every other day and started doing 20 min total body workouts in between. Already had 2 chemo sessions, which sucked, but were not that bad, considering what could’ve been. I have almost normal range of motions, but still do arm exercises 2 to 3 times a day to avoid lymphedema. I have no pain at all, just some pulling sensation when I lift my arms. I am still sleeping in the recliner, though, due to the fact that I can’t sleep flat on my back and don’t feel comfortable sleeping on my sides yet. Trying to change this by purchasing a wedge pillow. Will test it today and see if I can return to my bed. I am sick of short conjugal visits and want to sleep next to my hubby again. Regarding weights, I am taking it slow and only lift 3 lb dumbbells for now
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Thanks ladies, at least I’m not the only one with weight restrictions still! Going I get cleared to life her occasionally this coming week. It would make our day to day life easier if I could just put her in and out of the car, bed, and high chair!
Sn75....800cc!!! I’m lucky if I’m going to make it to 250!
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SLL i still have weight restriction at least until 6 weeks. No more than 10 pounds.
SN75 Tired most of the time. i nap at least 2 times a day for about 15 minutes or so. By 9pm I am ready for bed. But i do get up between 5 and 6 every morning.
I had my 2nd fill today. And I have stopped by my office for the first time since surgery. I have been doing work from home. (not a lot but some since I left on May 29th.) I planned on being back in 2 weeks and that didn't work out. Now I think I will be coming in part days. And maybe after the July 4th holiday full time. I have a sofa in my office that may be getting some use.
I have been going out each morning and taking in the sun and walking on the grass bare foot. It has helped. I now have some color, I was hoping to feel like hanging out with friends on the 4th but I think that may be over doing it. This has taken more out of me than I thought it would.
I slept in my own bed last night for the first time. I was a little painful but hubby said each time he woke up I was sound asleep. I laid down on my side and it was heaven. Crazy how just being able to sleep in your own bed can be such a great thing.
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Followed up with the surgeon and he released me to radiation, I'm 7 weeks and a few days past right lumpectomy, Tomorrow is the mapping for the radiation. I'm tender under my arm and across the breast. I have a lot of "random boob pain" that hits and goes away. I had one sentinel node removed but ended up with at least a 4" incision, no cancer in the node. My oncotype score eliminated my need for chemo, yea! My score was 15.
Started the arimidex a little over a week ago and I am fatigued and achy in the bones. I'm still working full time. Thankfully it's not a strenuous job. I work in an office. Thank goodness because I wonder how the radiation will affect me with the fatigue. I am saving as much of my paid time off as I can just in case I need to take some time. I don't have a lot since I've been at this job only 2 years.
I run out of energy fast. I wake up in the morning feeling like I could easily sleep a few more hours. I'm just trying to keep on so I can keep on. I am a lot more emotional. I try not to complain but I'm just feeling miserable all over.
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it is great to still hear updates from everyone. I am 6.5 weeks out from BMX and I really thought I would feel a lot better than I do
My BS said no lifting over "a gallon of milk", but I have another follow up on Tuesday and assume that will be lifted. I also have not had any reconstruction/fills/etc.
My energy is shockingly low. I am used to be tired all the time, but have always still been able to go, go, go. However, nowadays, I sleep more than I am awake and my stamina is not at all what I am used to.
I too have been way more emotional than my usual self. Mostly sad and angry, but it is internalized most of the time.
I am still in the recliner, but I have found myself turning on my side the last couple nights. It only lasts an hour or so and I wake up in pain, but it is lovely for that brief time.
My biggest issue is still the neverending chest tightness. At about 5 weeks I felt a slight improvement, like the level went from a 10 to a 9 and this morning I felt something similar on 1 side, so now maybe an 8?
Praying for all you strong ladies!
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Visit this morning with the surgeon filling in for my surgeon who's on vacation.
Problem: skin flap necrosis -- 3 weeks duration, and wound dehiscence as of last Saturday.
The story so far ...
1 called my surgeon's office first thing Monday am - Doc's on vaycay, PA isn't in, give it half an hour and we'll call back. Called back before lunch, PA was still "late," no ETA. Go see our associate 88 miles away (one way, on lots of toll roads -- twice as far if not) Oh hell no. OK, go to ER. Same hospital that did my bmx.
2 went to ER, seen by doc who said the wound wasn't infected based on bloodwork (btw thanks for the hematoma on the back of my hand -- why oh why do they love to stick fragile old lady hands instead of elbows with big fat veins), the skin is dead and necrotic and dehisced ("I believe I said that, but thanks"), and that it needed debridement. Then he went off for about an hour and came back only to give me name/phone of a surgeon who could see me Thursday (today). Me: huh? That's it? Did I just spend 4 hours here and all you can tell me was I oughta get that looked at by a doctor?" Doc said "sorry you feel that way" and handed me discharge instructions. It's been real.
3. Did a lot of calling the next day to see if anyone else in town could see me and fix this. Nope, so I made an appointment with the fill-in. Got a same-day appt with my primary who winced and prescribed Levaquin to knock down the slimy ooze and chase off its relatives in case they show up. Called hospital, spoke to ombudsman, they've started a complaint and investigation and will maybe adjust the bill. Yeah I have retirement savings that need to last me 30 years per Social Security actuarial tables. No, I'm not sending any of that to you for 4 hours of nothing in return. Oh, and my pulse oximeter had someone else's blood on it and there were bugs crawling around.
4. Whined to my nurse navigator at Blue Shield. She's been great all thru this. HER calls get returned pronto and I might be in love. Sure enough, misc staff from surgeon 1's called but none had advice on wound care or could confirm that gaping oozing chest wounds are not necessarily fatal. Surgeon's 2 assistant called, says the doc will be happy to look at it. On Thursday. "I've already had it looked at, I need this treated," described ER experience. Played the "sad old person without money survived cancer only to die from hospital germs, lives out in the country and tired of trips into town to get looked at" card. Whined to nurse navigator again. Must have worked ...
5. Surgeon 2 office called saying they would now like photos so doctor can maybe skip the 'look at' phase and advance to 'treat the damn thing already' phase. Obliged with graphic photos. Keeping them on hand for any future internet manbabies who creepy-message me documenting their anatomy.
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days go by or so it seems.
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6. Surgeon 1 calls, says surgeon 2 got the photos and will fix me up during my office visit. Keep skeptical thoughts to myself. Showered, noticed stitches deep inside the (expanding) wound. They're blue.
7. Today: Surgeon 2 looks at it, runs out to grab a scalpel, and carves out a full serving of Human Jerky, because that's essentially what it is. Damn glad I never drank the reconstruction koolade and stayed flat because just imagine. Skin from collarbone to underboob is basically numb since surgery so there was no pain whatsoever. A swish of peroxide, a squirt of baciatrin into the hole, a wad of gauze, many kind words and that awful paper tape that always makes me itch, and I'm repaired in less than 10 minutes and should heal well in a couple more months. 10 whole minutes that lazy ER doc couldn't spare in the middle of a fairly busy day.
8. Follow up with surgeon 2 in a week. Nice guy, A++++ would visit again. Nurse navigator will call me tomorrow to see how it all went. Went well and probably wouldn't have without her help.
I probably won't die from this after all.
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InnaB2018 i am 9 weeks post BMX too. I feel normal too, i am doing chores at home, and just like you i feel some time pulling sensation on my left side. I am not doing any exercise, My ps hasn't recommend me any. I am dealing with an infection and i am on antibiotics since day first of surgery and i still have for 2 more weeks. It is very frustrated but i guess it is what it is. I can tell that different doctors have different procedure, because my sister she got her mastectomy with direct reconstruction placing expanders in Greece and the doctor removed her drains on the third day post surgery. I had to keep my drains 3 weeks. I am going every week s follow up to my surgeon and every time he gives me antibiotic. I can't wait to be done with this stupid infection and not getting any more antibiotics because i've gained weight too and i hate it. Thank you all you ladies for sharing your experiences and wish you all the best and very fast recovery.
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I agree...I love hearing updates as well. Makes me feel like I'm doing ok. I'm 5 1/2 weeks post surgery and my energy is really low too. I'm surprised because I thought I'd be feeling better by now.If possible, I take a nap every day. I didn't get one in today and felt like poo. I'm sleeping in my bed with about 10 pillows for support - no where close to sleeping on my side. It just hurts. My back continues to hurt too and I'm still a little bitter that my PS said no more fills. But then I think about getting these expanders out next month and having time to recover before school starts (I'm a teacher) and I'm ok with it. My husband says I will be perfect no matter what size I end up so why should I fret? I'm tall and thin and have no skin up top to spare so it is what it is.
Faster - I'm so sorry you had to deal with all that but happy to hear surgeon 2 was able to help.
SN75 - 800cc?? How? I'm so darn stretched and uncomfortable as it is. Good luck to you.
Oh I still have weight restrictions which I'm starting to ignore (probably not a good idea and adding to my discomfort). But I start PT on Monday. I'm doing great with lifting arms straight up but out to the sides are killing me and I'm starting to stiffen up which worries me.
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Faster - hang in there. Sorry you are dealing with these things. And even though it might not be fatal, it's still your body and has long term impact and they need to care for you in a timely manner. Keep being the squeaky wheel. I'm in California too. Where are you located?
ljm - 800 cc is a lot. I'm at 450 and get 100 tomorrow. I'm doing ok with it but I'm not looking forward to tomorrow. I'll let you know how it goes. For sleeping I bought one of those u shaped body pillows on Amazon. It was $70 and is awesome! I can't sleep on my side fully but this allows me to shift in different positions and relieve pain. I wish I had bought it years ago! Give it a try.
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