I think Jacqb had a serenoma where lymph nodes were removed in September. Shes on May chemo and September surgery threads too. Have a look at sept surgery thread maybe. x
Thanks Ladies, I have spoken to my BCN this morning… definately sussed that you need to ring at 8am to catch them before clinics start! She said it probably is a collection of fluid building up but that they really like to give the body a chance to reabsorb it before draining with a needle as each time they put a needle in they can introduce an infection. We agreed to leave it until Thursday when I go to the hospital and they will decide then. But in the meantime she suggested putting a cushion or rolled up pair of socks under the armpit and applying slight pressure to it, as you would a blister to encourage it to drain a bit. It does feel slightly smaller today and I have left of my bra too as I think yesterday that was getting tight around it and causing more bulging. The drain wound has stopped leaking now too so will keep fingers crossed it sorts itself out. Also must go easy on the exercises today and tomrorrow… I think I was becoming a bit obsessed with getting my arm moving again and may have done more harm than good!
I will pop over to September surgery and see whats on there… thanks for tips.
Kip
xx
Good afternoon all
Goodness we all sound like we’re struggling a bit at the moment. It does seem like a never ending road sometimes doesn’t it? That’s how I’m feeling too right now. I’m still coughing, although did manage a walk today so I know I am a little better. My skin is starting to feel prickly but I am resisting the urge to scratch and slathering plenty of cream on. I have 7 more sessions and am wondering how bad it will get. Like you CDC I’m also feeling shattered. What a hassle having to sort out your doc referral. Wouldn’t it be lovely to have a fairy godmother sweep in to pick up the slack? Failing that I hope you get a nap this afternoon and feel refreshed from it.
Kip my arm felt like it had a tennis ball under it after my op but no seroma thankfully. Ease off the exercise sounds like a plan I remember when I had my drain in the nurses said more fluid is released when you exercise. I hope the leakage eases off soon too, it must feel like you are going backwards but I’m sure some healing is happening in there. Good luck for your results on Thursday too, I have everything crossed for you.
It is no surprise that you felt teary Jean when looking at the moving forward forms. It makes it real and brings it to the front of the memory, maybe parts of this experience that you have pushed out of your mind. I’m sure once you actually start going to the session they will be a great help, especially being there with others who have also been through this awful process.
Well here’s to putting our best foot forward and knowing that this will pass and we will feel better and happier again! X
Oh cdc isnt it just one thing after another! If your gPs are anything like mine it takes them a week of sundays to do anything. Fingers crossed they fet it right. My seroma does feel a bit smaller and the leak has stopped i think. K think with the waiting for results this week and then this underarm business it has hit home how scary this all is. I think when i am feeling ok i can feel positive but when feeling like a patient ita harder and all the what ifs start again.
Michelle good you got a walk, j did too and it was lovely but did find myself looking at everyone else scurrying around and had those jealous feelings of “you are going about your life and im dealing with this”! I have to remind myself that we dont know what everyone is dealing with hey! Oh deal feeling sorry for myself wont help will it.
Feenix hope those leaky eyes have stopped… but we are all allowed some… By the way my daughter baked a delicious cake with peanut butter cream… Would have been rude not to have a bit wouldnt it? Theres todays good intentions out the window… Oh well always tomorrow
Chin up ladies
Kip
Xxx
I’m exactly the same Kip when I’m back to being a patient all the doubts slip back in again and I start thinking about the uncertainty again but you’re right it doesn’t get you anywhere! Hopefully that stuff is addressed on the moving forward course Jean, you’ll have to let us know x
Hello how is everyone feeling today?
I have seemed to spend most of the day waiting for appts! I had rads this morning and then went straight to see the onc, who there was a 2 hour delay to see!
I went to discuss Tamoxifen, I think I mentioned here before i was surprised I would have to go on it as my score was low (4/8). Also I didn’t want to start taking it before February because of training for my trek, I’ve heard Tamoxifen can make your legs ache and because I was worried about the DVT risk.
My onc said she wouldn’t advise me to wait until Feb but that I should start taking it straight after rads but I can stop taking it a week before the trek and start up again when I get back. Re the aches she said Tamoxifen shouldn’t cause that, but see how I go. She also said I will take Tamoxifen for 5 years but won’t have to go on to anything after that which I am hugely relieved about too.
So on the whole I think I am happy with what she said and looks like I’m going to start taking it in a week.
Hope everyone is doing ok x
Hi all, well had my results today, was so scared waiting but thankfully the nodes they removed contained no signs of cancer! Apparently I only had 4… not sure if thats normal but the surgeon said quite often chemo just frazzles them anyway so thats all I had left! So relieved to be moving on to radiotherapy. I have CT scan on Tuesday and planning and then will find out when I start, having 3 weeks of rads to chest wall, above collar bone and also in middle of chest (which she says is a belts and braces etc as I had 2 nodes in my breast which contained cancer when they did the MX). Also got letter for GP to start Tamoxofen for 10 years (i was only expecting 5!!!) and need to start that asap. She said that as I had periods before chemo they will start on Tamoxifen but if I get any periods whilst on it I must let them know and they will give me something to stop ovaries working. She said Tamoxifen is ok for post and pre menopausal ladies. She said the main side effects are menopausal ones, mainly hot sweats, she told me they do accupunture at the hospital to help that if I need it and also gave me some leaflets about a magnet you wear in your underwear which is supposed to help (??) and a cool pillow. So lots of reading to do.
I also asked about future screening and she said I will be called for a mammogram of the remaining boob 1 year on from the MX, (so May). I asked about the fact that I was told my breasts were dense and they couldnt see much and she said that Tamoxifen and chemo will have made them less dense and so should be ok but I must mention it at mammogram amd they may do a u/s too.
Am going to have a nice glass or two of red wine tonight and hopefully a better sleep now that appointment is done.
Hope you are all ok.
Kip
xx
Kip great results, huge sigh of relief from you I’m sure! I don’t have time to write a proper response as I have choir tonight but will write properly tomorrow. Enjoy your wine and you evening, one step closer… x
Ah thanks Feenix. My seroma is going down slowly and the nurse was happy not to drain it as she didn’t want to introduce an infection. Just got to work on the flexibility now to get the arm up enough for the radio.
Kip
xx
Hi all
Things are moving on for you Kip that is really good news. I find it confusing that everyone is given different advice. I had my last period in Jan but no one has said anything about if my periods come back they will do something to stop the ovaries! Maybe the nurse will tell me that when I get my prescription?! I will start Tamoxifen after rads. I have no idea how many nodes they took out of me after chemo! I wonder if mine were frazzled too?!
I be that was nice catching up with friends Jean, I’m not on Facebook but I have told lots of people about my diagnosis. Sometimes I wish I hadn’t but it was unavoidable really. I have found that some friends that I had expectations of have seriously disappointed me with their lack of support and others who I haven’t know for as long or as well have been amazing. Things you learn after a cancer diagnosis eh?!
I’ve just come out of my rads for today and we are driving down to mums for the weekend and a double bonus we are going to meet up with my youngest and she’s going to stay a night at mums too. I absolutely can’t wait! I haven’t seen her since September!
Have a great weekend all xx
Morning!
CDC - just read your post about your friends. Thats so tough. I have been very lucky with my close friends being there for me but I have had some very unhelpful comments and stories told to me by others. I never meant to post my diagnosis on FB but unfortunately (or fortunately may be) somebody added a comment to a post I had made stating “so sorry to hear your diagnogis” well that opened the flood gates and it was out there I must have had 100 comments that day, from people I haven’t seen in years all wishing me well and wanting to know what was happening. I wasn’t ready for that and found that really tough but afterwards it calmed down and funnily enought about 90 of those people never contacted me again. I have a friend who has had BC about 3 years ago and she used to post photos of herself wearing hats and scarfs etc but never mentioned BC at all. I often looked at her photos and wondered why she was wearing them but (naively) never thought about BC as she looedk lovely and smiley and was often on holidays etc. Then one day she posted a photo of herself with very short hair and the the caption “I’ve beaten BC”… well I was gobsmacked as were a lot of others. Since my diagnosis we have been in close contact and she said she actively didn’t want to “put it out there” and just posted the photos so that anyone going through this would understand and may be contact her if they needed a friend. Well it worked, because we hadn’t actively spoken for many years and once I was diagnosed I reached out to her and her advise and help has been wonderful. I felt so stupid for not realising at the time what she was going through but once in that boat myself I totally got it.
I think we have to take the support from those who are giving it and let the others fall by the wayside (if only for a while) because, like me, they don’t get what its like until you find yourself in this place and truly realise what a kind word, a bit of support or a friendly face really means to you.
Michelle21 - isn’t it strange that all the hospitals seem to give different advice re ovaries etc. Would be good if everyone followed the same advice woulnd’t it. Hope you had a great time away and saw your daughter.
Amoena Bras - I’ve not looked at those, will be needing some new ones when I finally get my prosthesis, which I have been told to wait until after rads to get a fitting as it can change the shape of the remainign tissue.
I’m still working on the seroma, its getting smaller but still feels weird under the armpit. Completely numb still which is so odd!
Take care all
Kip
xx
CDC I really get what you are saying with your friends, it is a horrible feeling questioning friendships that have been built up over years. I had a very awkward situation this morning. I was walking with my usual crowd as I do most mornings and a ‘friend’ was walking towards me. I last saw this friend in Feb when 6 of us went away for a girls weekend to celebrate one of the groups 50th, I had thought we were all good friends however apart from an initial ‘sorry to hear…’ text I haven’t heard from her since. So seeing her unexpectedly was a shock and after she’d asked me 3 times “how am I?” (tilt head, soften tone) I replied good each time and didn’t know what else to say. “My right boob is red and sore from radiotherapy, , I’m getting over 6 cycles of chemo and surgery,” didn’t really feel appropriate! I muttered something about having to catch up with the dog, walked off and tears started to stream down my face. I know it’s because I’m going through treatment again that I feel more sensitive to friendship at the moment and will hopefully feel better after rads. Some people say ‘you find out who your friends are’ but I don’t think it is as cut and dried as that. I’ve spent a lot of time thinking about it and think people fall into 4 camps.
1.Those who naturally know what to say and how to say it.
2. Those who aren’t natural at it but try.
3 Those who are too ‘busy’ with there own lives.
4. Those who think you don’t want to be bothered.
I am hoping that after a bit of time I will stall to feel comfortable around all of my friends again but at the moment I feel that some close friends have let us down and I don’t know if I will see them the same again. I suppose only time will tell.
I get what you are saying Kip and I have questioned how good a friend would I have been if a friend of mine was going through it. I like to think I would have fallen in to group 2, not necessarily knowing the right thing to say but trying to. You are lucky to have someone to talk to who has been through this.
Good news your seroma is reducing, my underarm is still numb but sore from rads at the moment. Feels a little unfair why can’t the sore bit be numb so I can’t feel it! I have complete movement of it, the same as my left arm.
I am out of bras at the moment, wearing a vest top under clothes as slightly less irritating. I havent gone braless since I was a teen!
I had a lovely weekend seeing my mum and dad and being with youngest again, but I had to control myself as I just wanted to hug her but I don’t think she wanted a clingy mum around! It’s hard coming to terms with not being needed by her. I guess that is what it is all about.
I hope everyone enjoyed their weekend and haven’t got too tiring a week ahead. X
Hi everyone,
CDC - my masectomy site is not too numb, just slightly across the middle where the scar is. The back of my arm on that side was and still is numb though. I never had any problems with underarm numbness until the ANC, the whole armpit is numb, tried putting deodorant on this morning and couldn’t feel if I was doing it or not. I have heard that the numbness can slowly fade with time but not altogether. Another permanent reminder of whats happened hey! Glad you have got the Marsden, thats a good thing and hopefully you’ll get some answers. My tingley thumb is almost back to normal now, and I had last chemo on 23 Sept so fingers crossed your feet will be the same, I get some pins and needles now and again but definately not as bad. Must say though I still have achy legs, bottom, lower back etc from the chemo I think, terrible when I try to bend down and straighten up.
I’ve just had the planning session for Rads, will be starting on 29th November. Plannign was fine, got the tattoos too. THe nurse was lovely, I actually starting crying in the room with her beforehand as have just found the last few days really emotional and had lots of “what ifs”. She was very understanding and said a lot of ladies find they feel this way when it gets to Rads as its another treatment and also almost able to see the end. She has offered lots of therapies or counselling should I need afterwards which is good. Annoyingly before they could start the planning she said they hadn’t had my results from the ANC (slight panic as I then though I’d been given someone elses). So she had to go off to find the ONC to get the right results as they had put down I needed Rads to the middle of my chest. When she came back she said I didn’t need them as my tumour was only Grade 2 and only 3 nodes affected. Good job she checked! So just Rads to collar bone and chest wall (I say “just” funny how thats made my day!). So now just have to start the dreaded Tamoxifen (GPs still haven’t got act together and actually issued it yet) and wait for Rads to begin. Not sure how to feel at the moment… in limbo a bit…
Michelle - Glad you enjoyed time with your daughter, I feel like I want to hug mine close all the time, they find it totatly embarrassing!
kip
x
Kip glad your planning session went well, sorry to hear you got upset whilst there. It’s odd how it just creeps up on you isn’t it? I’m sure in time we will be super strong again. I have also picked up my Tamoxifen and I start taking it on Thursday. I know you have been debating morning or night to take it and have decided night. I’ve been recommended to take it in the morning, I can’t remember why! So we can compare se’s! I know it is odd getting so worked up about taking a tablet after all we have been through but I feel the same! Try to enjoy you time in limbo!
CDC I’m glad my message helped I think it is all about keeping perspective but that is so much easier said than done! The last thing I am going to say on friends is this… I have come to the conclusion that most people don’t actually change their behaviour. So although we feel that this devastating thing has happened to us and it completely consumes our lives it hasn’t ‘happened’ to other people. Their lives continue on as normal. I have found if a friend is the type to ring regularly then they continue to but if they are the type to be in contact infrequently then that is how they continue, in general people don’t change their behaviour but you do get a few gems who are very thoughtful and this comes to the fore or those who have experience of our situation and those are the ones who know what to say. I’ll shut up about this now!!!
How are things with you Jean? Are you back hooping? I hope to be back running in a couple of weeks. Our fundraising is going really well for the trek but I need to improve my fitness before I’ll be happy going!
I had a horrible rad session yesterday, they couldn’t line me up so I must of been lying there with my arm up for almost half an hour. It was painful but also I felt so undignified lying there with my boobs out being poked and prodded, and so vulnerable and out of control. To top it off tears started streaming down my face and I felt embarrassed as I got up and left.
Today is the last one, hopefully it will go much more smoothly than yesterday. I have a couple of my dog walking friends who have been so supportive through all of this coming to ring the bell with me. My OH is away at the moment so that will probably be the extent of my celebrations!
I hope everyone has a good day xx
Radiotherapy tick! I rang the bell lots!!
All done thank goodness and better than yesterday.
Onwards and upwards.
Sounds like you have lots of positive plans Jean, that’s what I need to do now rads are out the way. Good luck tomorrow with the moving forward course x
Ding Dong Michelle… well done reaching the end of Rads!! I started Tamoxifen last night, had to get myself psyched up to take it. Decided on bed time to begin with. So far ok, off to sleep fine, but woke up in the night (but I have been in the last few months anyway)… had one hot sweat but no more than I was having usually. Feel fine this morning. just waiting to see if it builds up and then hits… I’ll let you know.
I think I now have some cording under my armpit, the seroma has all but gone now but this has reared its ugly head. Am trying to ping it like I was told last time but this one seems a lot thicker. Will have another go if not will need to ring the BCN and see what they suggest. Just one thing after another isn’t it.
Kip
Thanks Helena, I love the bell, although it’s a little larger than the one I rang!
Kip that’s a pain getting cording again, I haven’t had that although I have heard you can get it at any time. I’m quite squeamish and the thought of pinging it makes my tummy turn! I hope you can get it sorted it does feel like one thing after another doesn’t it. My skin is sore and I am going bra less but you might not be as bad as I think you’re having 15 sessions? I had to have a booster week as I didn’t have the mastectomy in the end. My skin didn’t start to get sore until 14, so fingers crossed for you.
How funny we are Tamoxifen twins! I took mine this morning and nothing yet! Although maybe I should check in the mirror for sprouting hairs! Typically I haven’t had flushes the last couple of weeks for the first time in a while so I am expecting them back any time now! We will have to compare SE progress! X
Hi Feenix, my cording is definatley bigger than the one I had with the MX but I have been massaging it and stretching my arm out bur come Monday I think I’ll be on the phone again.
The course sounds really helpful, I am definately going to try to get on that for next year once treatment is done. I like the sound of the non-slimming refrreshments…:smileyvery-happy: and the bra lady will be very helpful.
I am still full of aches and pains from the chemo but managing to walk a bit but it does feel like I’ve done a marathon at the end of it. I’ve had 2 days of Tamoxifen too, and so far so good, no more hot sweats that I have had but of course it could all build up and next week … WHAM… could be on here moaning!
Have a good weekend…
Kip
xx
Hi Feenix ysa so far Tamoxifen going ok i am trying to just pop it in and forget about it too. My arm stretches aee going ok but i wil see if someone can take a look just to check it all out and advise me as to what massage to do.
Its a beautiful day here and im going out for afternoin tea with some girl friend later so more calories for me!!!
Kip
Hi Jean unfortunately my skin is breaking down with little burns on the skin on the underside of my breast, so the skin on skin gets quite painful. I’ve been up to the unit today and been given some gel, dressings and more cream. Afternoon tea seems very popular I’m going on one today. It’s been in the diary for a while but to be honest I feel very tired even though I was in bed at 8.30pm yesterday.
Glad you are getting over your tiredness. I love the description of treacle drag, I know exactly what you mean! Are you getting many SE’s from letrozole? How long have you been taking it for? I don’t seem to be having an SE’s from Tamoxifen as yet, fingers crossed x