Forum Discussion
Monkeygirl
14 years agoMember
Drain, Drain, go away . . .
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!
37 Replies
- MonkeygirlMember
Well it's funny that you say that, cos I was sitting at home after having surgery for a broken arm, two weeks after having had surgery to have my dead ovaries removed, with a boob like a bowling ball & feeling menopausal and a bit sorry for myself when I penned a little ditty to the tune of Katy Perry's "Your'e hot then you're cold". The first line was "I'm hot then I'm cold" (which I was), however the rest of it is not fit for public airing. Sufficient to say it DID cheer me up and cause much amusement amongst the family.
The moral of this story is that if you dont laugh you cry, and I have a bad habit of poking fun at politically incorrect stuff but it does keep me smiling. If I could only keep my lyrics out of the gutter I'm sure I WOULD be famous :)
- DonnaReeMember
OH, Monkeygirl! A record... lol... you are SO my era and.. hey... If I can come up with the words, can you come up with the tune and we can start on our first song?!?!? What do you think??? We COULD become rich and famous... or infamous!! lol...
- MonkeygirlMember
Yay so happy to hear you are drain free (" DonnRee, Unplugged", sounds like a record:) i was wondering how you were getting on so thanks for posting an update. Hope your chemo starts soon so it can END soon, geez it sucks having to go back for a second lot, I dread the thought of having to do it all again, but it's funny isnt it how you just plough your way through whatever get's thrown at you. Maybe being a seasoned veteran the second lot will be easier? Don't know, but fingers crossed for you.
Oh, and as for staying sane after eight weeks of drain strain, according to my husband and kids, my sanity has been in doubt for a long time before I ever had that drain!
- DonnaReeMember
Thanks TonyaM. You may have read the post above, so I won't repeat myself, but just wanted to thank you for taking the time to respond. I really do appreciate it. I agree about the syringing. It wasn't painful and I can put up with my chest swelling. In fact, after surgery (and when i was draining well) I had something of a 'hollow' in my chest and found it hard to wear a bra, as it kept slipping up into the cavity where my breast used ot be and then everyting looked weird (one pertend-breast roaming about where it shouldn't be!). So, the swelling has filled the cavity and left a raised area, which is making bra wearing much nicer! So, there are always advantages to situations we may not think we like!!
Funny thing with the fluid loss, it was always a bit bloody, but then got an infection and started on antibiotics abuot 10 days after the op. Then it gradually went pale and clear, but as soon as they changed to the other bag, it went all smokey again. I asked if that was normal and was told it was. But it seemed strange to me. But that slowly became clear, too. It took a couple of weeks. I have been on antibiotics for about 6 weeks non-stop, and I can't remember the last time ( a decade or more) I had antibiotics, as I prefer to heal naturally, but this time I needed them and they helped. But maybe the infection (or infectionS) have delayed the healing and made me drain more. Either way. I not have NO DRAIN PAIN and my SYRINGE don't make me CRINGE! :-)
I hope all is well for you! Take care. :-) - DonnaReeMember
Monkeygirl, Thank you so much for posting. Eight weeks... EIGHT WEEKS! That is a nightmare!! You poor thing. I don't know how you kept sane. I was going nuts after 5! You are a remarkable lady! :-)
I think I had just reached my limit when I posted the other day, and I just had the hugest whinge! (A little embarassing!!). I ended up phoning my breast care coordinator (nurse) and left a message, as my drain wasn't working. It was clogged (had done so several times) and my chest was swelling and getting tight and uncomfortable, but not really sore. As I had another appointment at the hospital the next day, she said for me to come in and she would look at it.. and she TOOK IT OUT! OHHH YEAH!!! Yep! It DID fell like winning the lotto!! hehehe
When I had the vacuum drain, it seemed to drain better, but the gravity one didn't. Mind, it was GREAT not to have to carry a bag around all the time! OH.. You SO made me giggle when you told me your airport story! lllooolll.. THANKS!!! It's funny, but getting on with life becomes more important (for me) and I just dragged my bag, then my sticky friend (bag) with me and even went about braless, which otherwise I would NEVER had done!!
So, as for my drain, my wound (the hole) flowed like a river for several minutes (soaking pads and dressings repeatedly) when the drain was taken out, then it was was out for 4 days and I was due for another check and they drainded another 380ml. This is less than my average loss, but it is building again. This doesn't worry me. The draining wasn't painful and I am happy to have the bag out. I see my medical oncologist in two days and she will check the wound and decide if I can finally start my chemo.
Funny thing is, while I am not looking forward to chemo, I want to start it, so that it will be all over. Chemo is not nice (well wasn't for me), but I have survived it once and can do it again. :-) It took me a while to feel better after chemo. In fact, It was probably just a couple of months ago that I was commenting to friends how I was starting to feel 'bored' on the weekends, rather than tired and needing Nonna naps! But that was approaching a year after I finished the chemo and radiation, which is pretty average, I think. Give yourself a little time and bit by bit, you get better, then one day you, too, will realise that you WANT, no NEED to do more! :-)
I hope you continue to improve. Remain well, and thank you for replying. Thank you for being honest and sharing. I am sure there are others out there, who will at least feel 'normal' when they read these posts. I know it made me feel better, knowing it just wasn't me. :-) - MonkeygirlMember
Hi Donna, you poor thing I can really sympathise with you! This is probably not what you want to hear, but my drain ended up staying in over 8 weeks. It drove me crazy! I ended up having to start my chemo with it cos it just wouldnt stop. After being in so long the stitches holding it broke, and it started slowly sliding out. I had a hissy fit one morning before going to chemo and pulled it the rest of the way out (pretty silly really, and I certainly am not recommending this!) and slapping a sanitary pad over the hole before fronting up for chemo. It drained into pads for a day or so and then of course the hole closed over. THEN my breast started to swell. It was like a bowling ball after a couple of days. My surgeon decided to give it a week and see what would happen, but told me he thought I would have to have another surgery and a larger drain put in. You can imagine how happy I was about that! Anyway my boob kept getting bigger and bigger, and then literally on the eve of having to go back and see my surgeon it started to go down. I was VERY lucky, didnt need the extra surgery or another drain. My breast has never gone down completely, I ended up doing physio and having treatment for breast lymphodema, but that's another story.
I truly hope you 'dry up' soon. One theory on why mine was so bad was that I had 33 nodes removed (I had a positive one so the whole lot had to come out). Hopefully yours will not be so bad. The up side is that if you can get through the drain strain, you can get through anything. I honestly believe that bloody drain gave me more grief than 6 months of chemo. You will get through it, sometimes now when I look back it all seems like a bit of a bad dream. I'm feeling pretty good these days, not as perky and energetic as I used to, but not sure if i should blame cancer or getting older for that! Probably a combination. But you've been there before so I guess in one way at least you know what you are in for,
I sincerely wish you all the best, you will feel like you've won lotto when that bloody thing finally comes out!
Jennyxx
PS. As for driving, i ended up swapping cars with one of my kids so that I could drive an automatic, I found that much easier as I could mostly manage with the one arm. Not sure how legal that is though! :) Oh, and I bought a cheap handbag to hide it in, should have seen the look on the face of airport security when they asked to inspect it one time! Yech.
- TonyaMMemberYou poor love- so sorry to hear you are on your second crap bc ride and that you STILL have a drain in.I think 6 weeks is the longest I heard of a drain staying in for. I had my chest syringed off for about 5 wks post surgery cos fluid kept collecting.It was better than that dreadful drain staying in.There is nothing you can do- the fluid will stop eventually.If it looks murky or very bloody then obviously it could be infected and you'd see your doc. I can only commiserate with you on your situation. I hated the drain.Hang in there- hope it resolves for you soon. Big hug, Tonya xx
- DonnaReeMember
Well, I came on here and was heartened to hear that someone else (albiet 2 years ago) has had the same issue. 18mths ago I had a lumpectomy and 2 nodes removed and got the all clear after 6 rounds of chemo and 30 doses of radiation, Then 2 months ago they found another lump and I have had a mastectomy and 2 more centinal nodes and 11 auxillary ones removed.
My frustration comes that 5 weeks and 6 days later (yes, I am counting!), I STILL have my drain. They changed from a vacuum bag to a gravity feed 2 1/2 weeks ago, and it has become blocked more than once and the 'cavity' in my chest is full and hard and when it eventually drains, I am averaging 100mls+ a day still, and it has not returned to the post-op state.
Has ANYONE been through this? Does anyone know ANY way that I can move this along? I have tried exercising/not exercising, drinking more/less, lying down more/being upright more. I don't know what to try. Can ANYONE give me some ideas?
Sorry to sound so complaining. I am generally patient (I think), but chemo is being delayed (not that I am eager to go there again, but it has to happen). I have limits to movement/activity, and I still can't drive. As my chest is swollen and just uncomfortable, wearing any sort of bra is difficult, especially for extended periods of time, so I go about braless (even to work--I NEED a life!), and I have a wonderful workplace!
OK! I have vented and feel a little better!! Thanks for listening to my rave and thanks in advance to those who respond. I DO appreciate it. :-) - TrishMLDBMember
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.