I'm only just starting my trip down BC Lane, and find I have a lot of questions. This network has been a great way to talk to other women going through the same issues, and a point of contact I just couldnt get any other way.
I only had my first chemo six days ago (AC) and so far I have been lucky to only experience slight nausea. Fatigue & bad headaches, and a general feeling a bit like having a bad flu have been the worst of it, along with hot and cold flushes. So if this is as bad as it gets I will consider myself lucky. I notice some of you comment that the AC treatments get a bit harder as they go on? Does everyone find this? Maybe it is a bit early for me to know how it will effect me just yet.
One thing really bugging me is my post surgery drain, which I still have after 5 1/2 weeks. It doesnt look like going anytime soon. I have to wait till it drops below 40mm in 24 hours, well I've been over 100mm the whole time, and since the chemo started I'm back up to around 140mm per day. I hoped the chemo would dry it up! Has anyone else found this? It is a minor thing in the grand scheme, but drives me a bit crazy, makes sleeping and getting comfortable hard, is very painful at times, makes getting a bra on a bit of a challenge!
Do you all wear the post surgery bra? I find I can tollerate a few hours a day if I have to, but after that it is too painful on the drain, and sometimes i get blood in it still. Have any of you found a way around this? I've tried snipping bits out of one of those AH Bras, to make it fit comfortably, but by the time you snip the annoying bits off there's not much left.
Looking forward to the day I can bring the drain home, start a little bonfire & have a ceremonial burning!
Comments
Drain
I sympathize with you I've had mine 11 days and it is so painful . I'm still getting 100mls +a day I came in here to see how soon it might come out .
I was diagnosed 14th June , had surgery 20th.
I'll keep following this post.
I hope you get it removed soon. I don't care about wearing bra with my drain ...ouch .
Goodluck
Please dont let me put you off - from what I can work out most people get rid of them in a week to 10 days, so I'm the exception not the rule - hopefully you will get rid of it real soon!
Thanks
Thank you for reassuring me, when are the one having it so long.
Our new - mantra drain , drain go away ....thinking of you as you navigate this journey too.
The forum seems a great place to share , encourage and whinge xox
Burn
I like the idea of the ceremonial burn !
How long???
OMG couldn't imagine over 5 weeks. I had four in total all removed at different times. The last one was removed at day 13 and for me was a struggle. Once it was removed moving around and having a shower was so much easier. I agree they do get sore around the entrance site and especially if they come apart and they need to re suction them - feels like a dyson is being applied to your chest! All I can say is you are obviously doing an amazing job at keeping it in and when you do finally get it out you will appreciate your freedom so much more.
You are doing great
Lara xx
Thanks Lara, maybe my nickname should be 'Drain Queen', not that I want it! lol
Do they ever change the bellovac ? Or Tubing ?
I still have the same tubing that I woke up from surgery with. It started off with the little squeezy ball and bag, they told me once it dropped to below 100mm a day they would shorten it. It went down to 70mm for 2 days after nearly three weeks, so they cut the long tube off and attached a sticky sealed plastic bag thingy to my side, over the hole and the drain itself. However ever since it has been back up well over 100mm a day. The bag has a little 'tap' thing at the bottom, so I have to empty it and measure the output. The sticky bag gets changed once every 12-14 days. I have to stay on antibiotics until it comes out. The skin around it is kind of all peeled off and gross. Just changed it today (it was starting to come off) Only trouble is if you dont get it positioned exactly right, it tends to pull or push on the stitch that is holding the drain into the wound. Needless to say we have buggered it up a bit today. So waiting to see if the pain settles overnight, or it I need to go back and have it professionally changed. It's not that hard to change really, you just must have to have a knack for doing it. So here I am whinging again, Im sure my husband is sick of it. Every time I move, sit, stand, lay, whatever I'm catching my breath as it either pulls or pushes on the stupid drain. My surgeon doesnt seem the least bit worried about it. Maybe the drain is a good distraction, if I didnt have it to whinge about, I might be more worried about my chemo side effects! They say there is an up side to everything. I'm sorry to moan and groan, promise to make no more comments unless I have something good to say.
I understand the pain ,it is awful ...are you still on Endone.
It's totally okay to whine and whinge here Monkeygirl.
I hope it settles .
No endone, but panadeine forte which I usually try to save for nightime to help me get some sleep. Thanks for being an ear, you will certainly hear my happy thoughts when I finally get unplugged. Jenny xx
Hi monkeygirl
You poor thing!-over 5weeks dragging that dreadful thing around with you.I would go nuts.My drain came out after a week and ah.... the relief. However,the downside was I got a seroma under my scarline which kept filling upwith fluid and I had to go have it syringed off twice aweek for 5 weeks.Either way we cop it! I don't know that you should wear a bra with the drain in.I wore singlets and loose tops while I was having those fun 5 weeks.Go ahead and moan-after 5 drain weeks you've earned the right to.Hope it settles soon and I'm sure it will- 6weeks was the longest I've heard of.
Tonya xx
Hi Tonya, thanks you have given me something to aim for now, (the six week mark) hope I dont break the record by too much. And as you said, its the devil you know, fancy having to have it syringed off for so long, that couldnt have been very nice! I have tried the old AHH bra, but have given up on that now too, think I will take your advice and just forget the bra completely until I'm unplugged. Jenny xx
I was told by a nurse they won't start chemo until drain is removed .
I think the drain is a lesser evil than a seroma that needs draining for 5 weeks ..ouch Tonya.
Jenny , did they decide not to give Endone or you ? I know mine is 11-12 days but so painful at times.
Hi Trish,
I had my first chemo a week ago, and they intend to continue drain or no drain. I came home with only panadeine forte, no talk or endone. Maybe you need the endone more cos you are only 12 days post surgery? I dont know if you can stay on endone long term. Five weeks of needles doesnt sound like much of an alternative to the drain does it? My pain levels definitely improved as time went by, I think we must have mucked the bag up somewhat changing it to cause the level of pain I have at the moment. Something is pulling/pushing against the stitch. Maybe it's stuck to the ulcerated skin. Who knows? Do you still have a high output? Lets just hope we dry up soon. It's hard not to let it get you down, especially when you dont get much sleep. I take some pain killers, try and get in a comfy position and then read a book or something to try and distract myself. When I see the Doc again Im going to ask if there is anything I can do to try and help it dry up, but Im pretty sure the answer is nothing.
better of 2 evils
I'm thinking that getting a seroma syringed off each week is more fun than the drain.Hey,it was an outing and I didn't feel the needle cos the scarline area was completely numb-still is.The drain might be starting to adhere to internal soft tissue and also irritating surrounding nerves.My drain site was sore for a long time afterwards.My surgeon passed it off as nerve disturbance. Anyway,talk to your surgeon- maybe it's more of a convenience for HIM to leave your drain in! I feel your pain cos I was soooo over the drain after 1 week.
Tonya xx
You know what Tonya, you might just be right! I reckon I would rather a syringe twice a week than what I have at the moment. I'm waiting for a call back from my Doc. In the meantime I keep giving it the evil eye, 'Dry up Dry up you B@stard' see if I can scare it into stopping :)
I will see him tomorrow. He s going on holidays and we live 4- 5hrs away , 20 mins from local hospital , staying in Sydney for surgery / recovery. I don't like my chances of them taking it out . I see your point Tonya , mine is quite numb and I am sure it is nerve irritation causing pain.
Geez that must be tough Trish. Where do you stay while in Sydney? Hopefully you have family or friends. I'm lucky in that I live in Brisbane, so everything is pretty close. I travel to the other side of Brissy for my chemo but it's still only a 45 minute trip tops even in the traffic. I really feel for women from country areas that have to stay away from home. My scar is quite numb also, but my drain doesnt come from there. It's situated a couple of inches behind it, kind of boob height under my armpit, a little to the back. Do your drains come from your incisions?
Hi Trish n Monkeygirl
That's where my drain was too-kinda under the arm.So it's in the right spot,don't worry.Yes Trish,you poor thing having to travel all that way.I would think they'd take your drain out sooner than later.If you have a breast care nurse where you live then they can syringe the fluid if it builds up. Whereabouts in Sydney are you staying?Fun chatting to you both.
Tonya xx
Thanks Tonya and Jenny
Mine is in the spot you describe right up into my left axilla - sorest where the drain enters through the skin and the stitch. Not up in armpit.Feels a bit itchy now too. I get a few other random stabby pains too . I haven't taken any Endone today just Panadol. It all feels tight all over though.
We have family in Sydney , first week we stayed Dural way, this last week Penrith area . I'll come down for chemo at this stage to have chemo at Penrith, have yet to get chemo appointment.
I am feeling a few chill like sensations today but don't feel like I have a fever , then I had flu vax Friday morning -so it could be that. I have an antibiotic ready to take if it gets worse.
I will ask him tomorrow , at least the drain is still around 60mls today not up near 80-100mls it normally is.
I appreciate knowing because better knowledge keeps me calmer.
Trish
Hi Trish
Everything you describe about underarm pains/tightness etc sounds normal Trish.You might even get the sensation that there is a football under your arm. Did you have a full aux node clearance or just sentinal nodes?and did you have a lumpectomy or a mastectomy?I'm in Kellyville,not far from Dural.I'm so glad you have family here that you can stay with. However,it must be hard being away from your home and friends.This is a great site to come to and get support/information or to just vent. I'm 2 years on now from my second bout of breast cancer.The first was a lumpectomy in 2003 and then a mastectomy in 2010. I'm on Tamoxifen now and,touch wood,doing ok. With either operation you'll find you feel much better around the 3-4 week mark.I was driving and back at work at that point.Hope your recovery goes smoothly and contact me any time.
Tonya xx
Sounds like your drain has become some alien force with a life of it's own! Tell the doc you are starting to hallucinate about aliens invading your chest and bit worried about your mental state! Mind you,panadiene forte can do that! I have crazy dreams about creatures if I take that.Good luck with your phone call.
Tonya xx
Hi Trish and Monkeygirl
I had my drains in for about 14 days after surgery. But I also needed to have the fluid syringed after that twice. I was told by my surgeon that the more you syringe the fluid, the quicker it will build up again.
So, having the drains in should lessen the fluid build up over time.
Good luck with your drains, and keep blogging here. We are all here for you both.
Love Julie XX
Trish & Tonya,
Evening Ladies! Sounds like you are in the same neck of the woods. Trish, I had a lot of hot/cold flushes after my op, and am still having them since the chemo started. Weird huh? I also had a flu shot between surgury and start of chemo. I dont think it's menopause or anything, Im only 47 though I have had a hysterectomy for cervical cancer back in 2001. I know what you mean about the tight feeling, almost feels like theres a big piece of string running up my arm, but it's too short. I had a lumpectomy & a tumour on my sentinal node, so all 33 nodes removed. Geez Tonya, been through this once before, bet it doesnt make it any easier though. Heard back from the Doc and I've been too slack with my pain relief, trying not take it all the time etc etc, so from now till it's gone I am taking it by the clock and to hell with it. Thanks for all the chats ladies, I actually feel a lot calmer tonight, my current drain stragegy is to pretend it isnt there.
Hi Jenny
Go the drugs! Don't forget the laxatives if you are taking panadiene.Yep,denial will work for awhile.Take care,hope you get a better sleep.
Tonya xx
I am 46 in 6 days , it feels tight still but ok . I'll see my DR tomorrow, I had double mastectomy and left axillary clearance - I think one sentinel node was 3mm ? whatever that means , his cut off was 2mm. I only had small area of invasive cancer in L breast but larger area of preinvasive -DCIS i think , don''t need radiation anyway.
Today I just perserved with panadol and we were very busy all day , out at another EYE appointment at Westmead for my 6 yr old, then a birthday party for him and his twin (1st July) . The pain was ok.
I will put up with the drain for now I think if he offers the needle as alternative .
You ladies have done some hard yards before it seems .
Tomorrow I will find out more info re - if I need hormone treatment and appointments for chemo.
thanks you have helped me a lot.