Jane - So glad you are feeling better today. My surgery is next Wednesday (23rd), so I am busy trying to organise life at home. How long was it before you felt able to drive after each operation? I am trying to work out how long I shall be out of action. Sorry if I’ve already asked this - memory rubbish!
I don’t think our hospital will be as wonderful as yours as far as accommodation goes. When I received the letter for surgery, it mentioned a mixed ward!
Have you already had radiotherapy? I do so hope your chemo is not too bad.
Hi Ann,
I shall be thinking of you next week, the day before is our 25th Wedding Anniversary but we are postponing any celebrations for the moment. Maybe we’ll just go out for a quiet meal for now. Suppose after that many years we need to do something!!! You def get less for murder.
You will be fine, I could come home the same day on my lumpectomies but because I can’t stop snoozing I always stay overnight. The last 3 ops I have been on first and still don’t wake up properly until the evening!! The discomfort is manageable with paracetamol and your wound will be a little sore, are you having any lymph nodes taken? You may have 2 wounds in that case. You don’t normally have a drain so hopefully that won’t be a problem, depending on what your team does. You will have an exercise sheet to look at and obviously it is good to get that arm moving about over the next week but only as much as you can do. I was never told not to drive until the 3rd op and the physio said I shouldn’t drive for 4 - 6 weeks which I was a bit surprised about, I think I had driven after about 2 1/2. I probably won’t this time as I have had a bigger surgery and I think 4 is more accurate. Ask your BCN they always came to see me on the ward before I left.
You will probably find you can do a lot of little things at home after a few days but don’t go mad. Enjoy a bit of rest as your body is healing and you need to get over the op. Concentrate on getting better. I felt very tired for a while so I pottered about in the morning and had rest with my feet up in the afternoon.
No I havn’t had rads yet, that would have come either after my wound had healed or by the looks of it now, after chemo.
Oooh not sure about the mixed ward??? There were men where I was but the rooms off the corridor with either 4, 2 or single beds. The men were in different rooms to the ladies so we were always seperated.
I’m sure we will speak again before 23rd.
Love to you all,
Jane
Jane - I am not sure about the mixed wards, either. I get the impression this is a Breast Surgery ward, so maybe the only men would be likewise affected and I don’t imagine there are many of those - although I did see one the other day, who went into the same room that I had my biopsy in - not at the same time, I hasten to add!
Congratulations on your 25th. A quiet meal sounds lovely. I expect you have had enough excitement for a while.
At our hospital, they test the first few nodes during surgery (SNB?) and decide whether to remove them all at that stage, in which case I would have to have a drain, but not otherwise I am told. I am really hoping that they are clear.
Six weeks seems an awful long time not to drive. That would drive me mad - no pun intended.
I thought they usually did the rads before the chemo, unless you have chemo before surgery - but what do I know? Anyway, it seems that every area is different in all sorts of aspects of treatment.
Continue having your rests. You certainly deserve them.
Hi Ann#
I had SNB, the day before my surgery I had to go to have dye injected into my boob and 3 hours later return for them to map the area under x ray to detect the first node or nodes that any tumour would drain to. They draw an x on you to mark the spot and next day your surgeon will know exactly where to go. They will also use some dye during the op. This is when your breast looks a bit blue, your urine turns blue for a short while and one of my surgeons said my face would look a little blue, I thought he was joking but the nurse on the ward said I looked blue so I’m not so sure now!! I had one node removed and a small wound of about 2 inches near my armpit. I did not need a drain for that The only drains I had was when I had a bleed after second op and had to have more surgery on the same day, another after third op because of the bleed (apparently they only get one bleed every six months and I had to be the bleeder!!!) and a drain after my mx. I think if you had a lot of nodes removed in one go you probably would get a drain. One vital thing to remember, if you do have adrain, try to remember to take it with you when you get up cos it bloody hurts if you forget and walk away leaving it hooked to the bed!!! It depends if your surgeon does the SNB, I don’t think all areas do it. What area do you live? I am in the south east between Croydon and Gatwick.
This is a real learning curve, I can’t believe how much I know after such a short time, just wish I didn’t have to but hey ho nothing I can do about it. Just great to be able to talk to you other girls who understand. I think that whatever you need to look up on this sight there is somebody who can help you, I’m also looking now into the chemo advice even though its possible I shan’t have it.
Take care, love to you all,
Jane
Thanks, Jane. That’s really helpful. I am in the south, too, although I live in Hampshire. I have to be at the hospital at 7am! I probably won’t get any sleep at all the night before. I have the SNB and during the op and they test it while you are still under. Then, if necessary, remove any further nodes at the same time.
I see what you mean about walking off still attached to the bed. Ouch! Did you have the district nurse come in each day and if so for how long? Sorry if I have already asked you this. Confusion is my middle name at present.
Hi Ann
Do not believe this is now the fourth time I am writing this reply. Don’t know what went wrong last night but 3 replies disappeared!!! Was not all me think the internet connection had something to do with it. I do have a very fuzzy brain at the moment and have to check everything I write as I keep hitting the wrong buttons!!!
Anyway, not long to wait now, you’ll be fine. Take something loose and easy to wear when you come home, preferably front opening. You really don’t want to be struggling with something over your head. You may wake up with a tight binding velcroed round your chest. My hosp does this and I now have four!! It means you don’t need to worry about a bra for a few days, even longer if you have a drain. If you do have a drain the hosp arranges for the district nurses to call and check it, they will only take it out if the fluid loss is below the surgeons directions. Mine was 50mls in 24 hours. After my mx the nurse called the day after and by midday I had only lost 30 mls so I knew it would come out. It felt like it was already halfway out as my 6 month old pup managed to get her paw caught in the wire!!
I am getting a bit more use in my arm now, still bruised and swollen, but I have left a bra off over the weekend so that has been a bit more comfortable.
Have my appt to see Oncologist next Monday so that will tell me where I go next. What a scarey time we are all going through, never thought the year would be like this!!
Well, need to go and get Anniversary card for OH for tomorrow, normally I make all my cards but not in a position to do that at the moment and really wasn’t thinking about it in advance. Had eldest daughters 21st to sort out in August.
Am sure I will speak to you before Wed but if not you will be fine, its another step out of the way and let us know how you are getting on cos we’ll all be thinking of you.
Take care, love to you all,
Jane
Jane. Thanks for your kind wishes. My typing is just the same. It’s as if I just take the letters from a word and mix them up in a random fashion. Thanks for telling me about the binding. I didn’t know that. I do hope you will be more comfortable soon.
Happy Anniversary to you both. Hope you have an enjoyable time. I have just been out for a meal with my brother and sister-in-law, which made a lovely change.
I am very challenged by this site and my memory today and so if you don’t get this Ann apologies. Just sending you JC and Jane good wishes and all those who are coping with more than me, as many of you are. Hope that your op goes well tomorrow 23rd. My results were good - no node involvement, Grade 2 Er+ Her-, but no clear margins so have to go back next week for another WLE and am simply keeping an open mind re thereafter and concentrating on hubby who is having heart bypass op in October. We were in Australia this time last year seeing our new grandson and are hoping to get back again next year to see no two. ! !
Hi girls,
Ann you may not read this before your op but incase you are up tonight not able to sleep, good luck for tomorrow, you’ll be fine and look forward to speaking to you soon.
Upseydaisy, welcome back, I was wondering how you were getting on. Glad to hear your nodes were clear, that is such a relief. Its a pain going back for the clear margin, I’ve been there. At least you know what to expect this time. I had to wait 3 weeks in between my ops so just as I healed nicely they opened me again. A zip in my case would have been a lot easier. I’m sure they’ll get what they need this time, there are not many difficult ones like me!! Sorry to hear your hubby is also going to need looking after, sounds like you two will def need that hols in Australia soon although with two little ones I expect it won’t be all relaxation!!
Take care and love to you all,
Jane
Had my op yesterday and came home that night. Recovered quickly from the anaesthetic. No drain or clearance, so presumably it hasn’t spread. Back to results clinic in two weeks.
Feel fine, but sore, obviously. Look black, purple and blue - a very pretty shade of teal, actually, from the dye they injected.
Thank you all for your kind wishes. No, it wasn’t that bad - just the hanging around, getting anxious.
Hi Ann
There we told you it wasn’t that bad. Just give yourself time to recover. Did they take any glands? I think you said your hosp was able to test at the time so that is good. Two weeks will go quickly but your back to that horrible waiting!!!
Glad you sound so cheerful,
Take care and love to all,
Jane
So glad it went ok for you. I felt a massive reduction in anxiety after I’d had my op.
How is your arm ? have you tried the exercises yet?
Take it easy, get plenty of rest. The time will pass quite quickly. Can’t believe I am now 4 weeks post op!
Jane and Anna - I saw the registrar briefly after the op and he said they only removed the Sentinel Node, which they tested at the time and it must have been clear as they didn’t take any others. Yes, I feel mightily relieved. It is such a big work-up.
My arm is sore but I have been trying the first exercises. Got as far as the walking up the wall with my arms, but can’t get the affected one straight yet - well, not without forcing it, which would be daft.
Did you have a painful throat afterwards? Mine was ok yesterday but it hurts a bit today and I am wondering if they put a tube down it, although it was not mentioned. They injected the anaesthetic into the cannula and I had an oxygen mask before I went under, but I don’t know what happened after that. I have also just developed a stiff neck.
Trying to take it easy and stayed in bed most of the morning but that was more because I didn’t get much sleep the night before. Had to get up at 5am and hadn’t slept well. Been pottering around since. I find I am better if I am on the move, as my arm hurts more if I keep it still too long.
Hi girls I’m quite new to the site and have been through your past posts and they have been of comfort to me so thks for what you have shared.
Having found a lump last year I went for mammo and aspiration and all indications came back benign, after being given the choice of a lumpectomy (although it was recommended) i went for it and am so glad I did even if the results were obviously not what I wanted.
I was told that they had found lobular bc and they had to do a further excision clearance and also full node clearance, followed by rads.
That was 6 wks ago I found that scary enough but everyone the BC nurses, staff nurses and doctors were great and the reality wasnt as bad as I thought. They didnt get a clear margin and found cells in 2 of the 22 nodes after talking it through decided on a further excision and 6 months chemo is on the cards.
That was 2wks ago and again it didnt work so am scheduled for mx on the 30th and from being told last week until pre-op today have been terrified not of the surgery but of the actual fact of losing my breast.
Today got details of the pathology and that there was still no clearance and had found DCIS, lobular and pre cancerous cells and there was some mucinous involvement!! Only good thing was that it is low grade at moment, but when the nurse said youve got a ticking timebomb in there it made me feel ok this is something I have to do and can do
Sorry for going off on a complete rant but aprt from the nurses its the 1st time I’ve been able to really talk about it. So again thks for the second hand advice I’ve got from you so far its been of great help, best wishes to all of you
Hi Ann
That’s great about your sentinel node. I had two sentinel nodes removed and 2 others ( don’t know why…) but was told they were all clear as well.
You must be doing really well with the exercises to get your arm up the wall at this stage !!! I can only just do that now!! ( I have some “cording” but am working on stretching it every day)
I did not have a sore throat or neck, luckily. I think they do put a tube down your throat but they didn’t tell me about it either before or afterwards!!
You’re right it’s best to keep moving with your arm or it kind of seizes up.
Alexc23
Welcome to the site. I hope you find it as useful as I do…it’s a life line really!
Your situation does sound really hard and I think you are coping with it marvellously. You sound determined and positive, and after all those disappointing and scary results, that must mean you are one strong lady!!
I found it useful to browse around the site and find people at similar stages or with similar diagnoses to me as it feels less weird and lonely then.
Best wishes, take care
Annalou
Thanks, I posted last night in a fit of get it all out and then went off thinking what a whiner I sound, so thanks for the kind comments
Ann
Agree you are doing well there, as well as stretching I found lightly rubbing in moisturiser on the arm and shoulder helped, something like an E45 milk. Although it can feel weird, it felt like it might be helping to stimulate the nerves and seemed to reduce some of the numb feelings you can get
Hi girls,
Welcome Alex, never worry about whining, whinging, ranting, or crying, this is the place to do it cos we all kmow how you feel.
Ann glad you are doing ok, its early days so don’t overdo the exercises. Good news about your SNB I only had the one taken the first time and that was clear. Yes I did have sore throats after all my ops apart from the last when I had a stiff neck! They do put a tube down after you are asleep. On my last op I was asleep before they got as far as putting the nasty smelling mask on my face, probably all the anaesthetic still in me. They say it is only oxygen but it does smell funny!!!
Anna, I have also got cording this time, I am trying to stretch mine out so that I won’t need physio. Its my left arm and I am left handed so it needs to be working properly!!! My armpit is really sore and has taken two weeks to be able to get my elbow higher than my shoulder. Still, I’m working on it.
Alex, your history sounds a little like mine. Sorry to hear you have to go back again, I know what that feels like. I’m very lucky bacause I didn’t hesitate about the mx in fact I asked for one before but they wouldn’t do it. When I saw how much they found after the mx I was so glad it had all gone. I did want a reduction before this all started so I suppose I probably wasn’t happy with my size anyway. My BCN asked how I was coping and I said I had no problem but wondered if i would after the op. As yet no. Maybe I am lucky, not everyone feels like me. I think having all the ops before helped too, I just wanted to move on to the next stage and not keep going backwards. Although they removed 9 nodes which were all clear, it looks like I also will have chemo. I find out on Monday so we may be chemo buddies! I had thought I would be sorted by Christmas but obviously not.
Well, Sunday I am going to teach 2 craft classes, I need to get my grey matter working and will thoroughly enjoy myself. It will give me something else to think and talk about and everyone has been so kind. I shan’t have to use my arm too much and I will be sitting most of the time but I bet I shall be tired after. Still we should all have a hobby and crafting has helped me so much over the last few months. I have some fantastic friends who are so supportive but when it comes down to the nitty gritty you girls are the only ones who really can understand what it feels like to be here.
Thanks for that, love to you all,
Jane
JC
Thanks, but sincerly hope we won’t have to be buddies in that way, hope you get the result I had wanted. I’m finding as I go along that whilst at times I might feel a little envious of others getting the good results, the last thing I would ever do even to to people I have in the past not necessarily liked is wish any part of this journey on anyone. Know what you mean about doing something as at the moment am at a good point of movement etc have spent all day cleaning and ironing, so all done before I next go in , that in itself is enough to hate this thing cos never wanted to do that before now, but keep feeling like need to do it when I can
Take care all
Alex
Thank you all for your kind wishes. Having stopped the painkillers, I find I am being more cautious with the exercises! I need to lift my arm really often, otherwise I seem to be back to square one. The colours are amazing - beetroot, raspberry and yellow, with a hint of blue - nice!
I had a call from the breast care nurse yesterday, to see how I was getting on. She mentioned that they test half the sentinel node during surgery (which was clear), and half in the lab afterwards. There’s me assuming it is all clear and there is the possibility that it isn’t. Also, reading your experiences about clearance, I am worried about the results clinic now.
Alex - So sorry you are having such a bad time. This really is the place to share it. The help from these ladies is getting me through this, as they know what it’s like and feel the same fears. Rant away! It is also really helpful to write down your true feelings for your own sake. Thanks for the tip about the cream. I shall try it when I take the dressing off on Monday.