Just diagnosed and wanting to talk to people who understand

[A.Faed]

Hi Sissy, yes, small victories count for a lot...what have we been reduced to! BCN phoned to check how I was doing, said the drain must be removed tomorrow whatever, no district nurse yet, hope she will be bringing a new bottle as this one has nearly 300ml in and is quite heavy! I know exactly what you mean about the mini hot water bottle from when my drains vacuum wasn't working...you can even hear it slopping about; gross! She said it is not a worry though, and not really worth trying to go to A & E for if its out of hours, just to call them.

She also said that it would feel a bit stiff and firm in the area towards the end of this week, so you're right on target to be feeling it now! Did you have node clearance as well as the mx, I can't remember? Appointment with Mr C next Friday afternoon at Kent and Canterbury, have you got your time yet? I really hope it doesn't get cancelled this time. I can stop wearing the socks but the dressing should be left on for another five days...Monday might be shower day, then!

BCN said I will be having chemo, because of 'extra capsular' spread in sentinel node and 'multi focal' disease, I wasn't surprised and tbh, it sounds like I need it! Should get oncologist appointment before Christmas and start chemo at the end of January.

Amanda x

[JenJen]

Glad you are doing well Sissy and Amanda x hope you heal quickly x

Im day 3 of EC and didnt sleep very well last night but other than that I feel OK just a bit tired, im fed up though as I cant stop thinkingy that its got to hit me worse at some point

Love to all x

[Sissylw1980]

Amanda, I now wish that id had the drain in for a bit longer as im worried that I'm filling up! The BCN assured me it's all normal and that by body should hopeful absorb some of it. It's an odd feeling though as when I move in certain positions I can feel the liquid moving about! It's like a mini hot water bottle strapped to my chest!

My upper arm is feeling more 'burny' today and sensitive, which I'm hoping is a sign that my nerves are knitting back together, etc, today's triumph is that I managed to flannel wash myself without any extra help and even managed to flannel wash under my bad arm. Also managed to brush my hair using the bad arm and tied it back into a low ponytail. It's odd how just being able to do the small things I take for granted now feels like an achievement!

How is everyone else today? Sissy xx

[A.Faed]

Well make the best of the high, Julie...we never know how long it will last, do we?! Too bad that NHS 111 didn't get back to you, just as well the oncologist was about to give advice! I have found my concentration is shot since I’ve been diagnosed!

I might get my daughter to wash my hair again tonight, it does feel good....I can hardly wait for my first shower, maybe Friday, a week after surgery; I think that is when they said the dressing would be coming off.

As for the drain, it's done 300ml in 24hrs. The discharge papers said it should come out when is was draining less than 50ml or on the 5th day (today) whatever it was draining, but surely if they take it out when it is draining so much, I will be 'filling up' with the fluid myself?

Good luck tomorrow Tina, must have been lovely to have you son home!

Love and hugs to everyone!

Amanda x

[julie_m]

Claire glad the BCN was able to give you a bit more reassurance, thinking of you lots 

Tina lovely to hear your son is coming home, so glad for you that you have a bit of support at home 

Sissy and Amanda hope you are drain/dressing free soon and feeling brighter, I remember very well that first hair wash (and the next few!) after my op, really makes you feel so much better doesn't it, sometimes it's just small things like that, that lift your day and help you along 

No-one phoned me back from 111 Tina, I had to leave to go to rads, but they were really kind and helpful at the hospital and asked my oncologist who had a clinic there today, who said it would be fine and to take it again as normal tomorrow.......still can't believe I was stupid enough to take 2 at the same time !!!?!!! Away with the fairies methinks ,the weird thing is after I stopped panicking I have actually felt really much better today than I have for a long time, on a Tamoxifen high maybe, watch for the crash and burn tomorrow! 

Big hugs all, nite  x

[Sissylw1980]

Tina, I was worried about things growing and spreading whilst I was waiting the 3 weeks for my op, my BCN and surgeon both assured me that things don't move and spread as quickly as imagined they did. I was forever feeling my lumps!

Claire, so glad you've spoken to our BCN and that it's all not as bad as you initially feared. With any luck you'll be in and back out within the next couple of weeks. It's going to be rubbish, but you, Amanda and I can keep each other company. Sissy xx

[Tandy 4]

Hi Claire, sorry I meant to have replied to your e mail! So glad you've had some reassurance from your BCN Hun. I'm getting into panic mode again...... Sending you big hugs! Love to all on here xx Tina

just read your post below Claire! I'm ok thanks. Few lonely tears Sunday evening, got on with things yesterday..... Had to go for a bloody smear test! 😜  (Here's hoping the big guy doesn't throw anymore **bleep**e my way!!!?!) Then treated myself to a Markies scone! Got home to a message from my son that he had a few days off and on the train home! What a lovely surprise!! Think he was worried about me being on own? So I've my boy home and he's coming back through to Aberdeen with us Thursday morning! All be it at stupid o'clock!!?! 

Live a lot of questions reeling round my head..... Still worried that it increased in size over the weeks waiting for surgery!? Wasn't told how many nodes tested etc? Did it spread st the same time it increased? Paranoia central here.....I know it's because op day fast approaching!?  Tina 

[Jobey68]

Hi Claire, I hope you are feeling a little better now you have spoken to your BCN, they are lovely and will always be honest with you but it's a pity they didn't take the time to make sure you understood it all yesterday though ,could have spared you at least some of the distress you've been in the last 24 hrs, you've got a plan now so just try and let the experts do the hard work and you concentrate on looking after yourself and surrounding yourself with the people who make you happy, don't give a monkeys about work it's just not worth getting yourself anymore upset over Hun, I know it's all utter crap but you can only deal with it a day at a time, things will get better and you will do it, us ladies are made of stronger stuff than even we realise!! Lots of love Xx Jo 

[Cs66]

Are you ok Tina? I know you are on your own and Thursday is your next big challenge. Hugs Claire xxxxxx

[Cs66]

Didn't see the BCN yesterday Barry, and I don't think I took it all in when surgeon speaking I could only hear him saying chest wall tumour, more surgery. Lymph nodes and then I panicked! I am such a gibbering idiot every time I see him! Can't stand what this does to us! Claire xxx

[Tandy 4]

Oh Julie! Hope they've called now? Don't be daft everyone has their own worries! I'd be flapping too! 😧☺️ Xxx Tina

[PeggyCat]

So glad you have had some further clarification and reassurance Claire and that you are feeling a bit better.

Sending a virtual hug. x

[bazza7676]

I'm so pleased the BCN spoke to you today Claire. I do wonder why she or the surgeon didn't tell you this yesterday. They should have known at least a little reassurance would have been nice. At least you have a clearer idea of what you're fighting. Big hugs x

[JenJen]

Hugs Claire xx
Glad you are feeling a bit better x its a b*gger of a situation to be in but at least your BCN has assured you its not as bad as you thout it could be.

As probably you and lots of the ladies (and Bazza) on here told me when my boss contacted me re replacement at work and that was what I thought was the final straw dont worry about work just duck em and it till you are well enough to go bacj, look after you and yours x I actually came round to the fact I could blame my replacement for things that went wrong for a few weeks when I went back. I was answering emails till yesterday but now I am activley having treatment I have made it clear I am no longer available for work in anyway shape or form. Wishibg you well for your surgery and all future steps x



EC day 2 has been very uneventful, even though I cerrainly know how to give an injection I had a mild panic doing my own! But other than that I feel OK bit sleepy but nothing else yet.

Love and hugs to all
Jen x

[familytree]

Good you were reassured by your breast nurse Claire. They are a fountain of information and very reassuring. I know they don't say things lightly for fear of a backlash in this suing culture so take strength from all she said. It is bloody terrifying growths aren't picked up always with a mammogram. Makes me want an ultrasound or ct scan! Glad you're feeling a bit better today. Love Lorna x x

[Cs66]

Sissy and Amanda, you are both going through it too. I hope you are ok. I had quite a bit of swelling under my arm after op and was worried it was a seroma but it settled down and  dispersed. I was also very numb around my wound but that has largely worn off now. My drain kept filling too Amanda but it did stop when the nurse took it out. I had a different district nurse everyday too!

horrible thought that I will have to go through it all again, but at least once both boobs are off No more surgery until reconstruction.

i feel a lot better now as the BCN rang this afternoon and was very reassuring. I have been a complete mess all day just crying! She told me I am still a stage two and that the chest wall was a nodule that was part of the BC and doesn't mean it has spread. They also found a completely new tumour that was 23mm but had not shown up on any scans as my breat tissue is so dense. V v. Scary. That is the one they are waiting for the results of but the rest are all ER+ and HER- and she thinks this is highly likely to be the same. 

If it is then surgery asap  then chemo so us three could all be January starters! Strange way to make new friends! 

Thank you so much EVERYONE for the support  today. This has been without doubt the toughest day so far. Not helped by my boss phoning to tell me they are advertising for a temporary replacement for my job! I know I won't be back for a long time but that tipped me even further over the edge!

thank you again. We all have to get through this. Your support is invaluable.

love to you all Claire xxxxxxx

[A.Faed]

Well it's drained over 200ml in the last 24 hours, so I think she's was intending to change the bottle tomorrow and then see what happens after that but the discharge papers said it should come out on day five whatever it was draining. So I don't know what she will do, I would rather it was going into the bottle at that rate, otherwise I will be filling up again like last night! 😝 I suppose it can't be left in too long as it would sort of 'heal' in!

I have had had three District Nurse visits so far, and a different one each day! My daughter washed my hair last night, that was a relief! I think I will just have a 'baby wipe' wash tonight, don't want to know the tube out again!

Amanda x

[Sissylw1980]

Had my visit yesterday, did have a bit of a meltdown, however she took off the big dressing and replaced with something smaller. Am very numb across the chest and under the arm, which is probably just as well! Managed to get my hair washed today though, feels a lot better. I called the BCN and I'm going to see her Friday so she can check it all out. Amanda, have they said when the drain can come out? Xx

[A.Faed]

That seem quite common Sissy, you should phone the BCN if you're worried, as if there isn't enough to deal with!

I'm feeling a lot worse than after the last op, more done I suppose. Nice district nurse today, I've still got one drain in though. The pipe came apart when I was washing last night so I put it back together but it broke the vacuum, consequently it hadn't been draining over night and when I woke up I had a sort of mini hot water bottle where my breast was! When the nurse came, she fitted a new bottle which quickly drew off about 200ml and that along with her changing my dressing and I very nearly fainted!

Amanda x

[Sissylw1980]

Has any one any experience of seroma after their mx/ANC?

Claire, have been thinking about you a lot since last night, sissy xx

[A.Faed]

Claire, you will get a little 'used' to this latest news...it's such a big shock at the moment but the fear will lessen a bit as your thoughts start to concentrate on preparing for the next round! I'm no medic, but logically the chest wall is very close to the breast, so it's nearby so maybe it is just in that area. Did you have any other scans, CT or PET? (I haven't, just breast MRI) Have you been given another appointment with anyone yet, maybe ...the surgeon or oncologist? I find it always helps when you know what and when the next treatment is going to be.

It's natural to worry about your family, in my darkest moments, it's them I worry about, not me but if they're anything like mine; all they want to know is what they can do to help you now and to know that you are going to keep giving the ba***rd thing everything the docs will throw at it. I hate being constantly told to "stay positive" because sometimes it's just something you can't do...but I would say "stay determined". Look after yourself to help stay in the best physical condition for whatever is coming next!

You are in my thoughts, and everyone else here.

Love and hugs,

Amanda x

[JenJen]

Julie what I do for another med I have to take everyday is draw on the box the number of the date so I can always tell I have take it I have a pen next to it so its easy to do so today I just wrote 10.on it I went back an hour later as I thought I hadnt taken but the box said different . Not saying itll work for you but its an idea x

[julie_m]

Sorry Claire and Tandy this must seem so trivial to you when you're both going through so much sending lots of love and support your way lovely ladies  xxx

Thanks for replies ref Tamoxifen OD ladies!!?!!! Had a quick Google too and seems to be ok, fingers crossed, will have to cut them up into ones from now on, I'm so crap at remembering and taking tablets, first time in 3 weeks I've messed up, think my brain is fired not just my boob!!! Still waiting for 111 they better hurry up got to leave for fry time in half hour, could've turned into the witch from Snow White with flaming hot flushes by then!!!  

[mf]

Hi. I did a quick search and found that several people seem to have done this with no ill effects, though always best to check. Good luck.

[Jobey68]

I dont think it does any harm Julie, ive taken two in a day before when i switched from morning to evenings, im sure its all dine Xx

[julie_m]

Please help have absentmindedly taken two Tamoxifen instead of one what should I do? Have phone 111 and waiting to hear back, such an idiot

[Jobey68]

Oh Claire love my heart hurts for you, yours boys absoloutely will always need you no matter how grown up they are , my eldest is married but he still needs his mummy! Its because of them that you will find the fight to deal with this, the guilt we feel having to rock their world with this is dreadful 😕
You will be feeling totally shattered right now and i so wish i could say or do something to change things, you will process it somehow love and as always we will be here when you need us xx

[Cs66]

Thanks Francine. I wish I could know that it will all be ok. Losing my hair doesn't seem such a big deal now!
It's all just so difficult to deal with. Xxx

[Tandy 4]

Oh Claire, we all know how you're feeling Hun. It's bloody bollocks! So many questions come to mind, I've had the same..... Take it slowly. How long have you to wait to see someone again or do you have a date? I don't know what else to say Claire, I had two days of turmoil and by the third was very angry again, not towards others but at myself and this **bleep**e inside me! Wanted it done NOW!

I went into my local CLAN on my own, wasn't sure why? Or what I wanted from them? But a lovely lady sat with me and listened as I told her everything that's happened to me. She just smiled, nodded as she listened and held my hand as I cried. She cried too and hugged me. There was no "be strong" or "stay positive" just listened and asked if I needed anything. Turned out, once I settled and thanked her, she gave me cuppa, introduced me to another lady to talk about therapies and apologises for leaving me, but she had an appointment at hospital herself for a brain scan!

is there anywhere neutral you go go to to openly talk? It's so hard I know, as all you want to do is protect your family from this and not let them see the anguish your feeling! Ring the BC support line Claire if nothing else available? Let me know how you get on Hun. Xxxxx 

I'm annoyed I've had no contact from 'my BCN'........ Last time I saw her was the day before my surgery. She was with another patient when I sat for results last week (a different nurse came in). Do I need to ring her whenever I have a question? Reading some posts their BCN is in contact regularly. Part of me is too scared to ring...... Do I want to know the answers!? Like you I'm fretting over it spreading. I turned in bed last night and for first time in weeks felt such pain under my arm! Not sure if I've pulled something, but then the crazy questions begin again in my head! 

Rest up Claire, deep breaths xxx big cwtches from me xxxx 

[Fuffs123]

Sending Claire a massive hug today. You were on my mind last night as I went to bed and I suddenly had a strong feeling that everything will be OK. Don't ask me why but sometimes I get these 'feelings' and they've never been wrong before. I'm not in the least bit strange normally but when I was in hospital a lady in the next bed, who said she was a psychic, said she felt something in me! Sorry if this sounds like drivel! Delly, you are fab, love your posts and I'm so glad you're starting to emerge from the black fog. I've been there too at times in my life. Xx Francine
M

[Cs66]

Thank you everybody for your support. I am not in a good place today and feel as I Am right back to the starting line in dealing with this hideous cruel disease. I went to see surgeon preparing myself for the  worst but it always seems as if there is even worse news than I expected! The thing that has scared me most is that he sued there wer some cells in chest wall  which they removed but does that mean it has spread. I feel as though i have let down all my family who just want me to be well. My boys may  be nearly grown up but they need me, so does my mum. 

Everybody has been telling me how great I look and how strong and positive I am but right now I feel the worst I can possibly be and I don't know what to do. 

Sorry to go on but can't say this anywhere else.

hope you are all ok today

claire xxxxx

[delly]

Oh Claireeeee, 

Listen, all of us on here are currently 'surviving' BC. But NONE of us know for how much longer - months, 5 years, 40years ?? We all know no one can tell us we're 'cured' because, as yet, no one can yet see what's going on inside all the rest of our bodies to be sure nothings still lurking around. It absobloominlutely STINKS. And we all know it stinks. We just found out sooner than you did.  All we have left is to take it and what we have left and find the strength to carry on.

All of you on here and elsewhere on the forum, have no idea how much you have helped me. I've been in a serious suicidal mode for the last 1 1/2 yrs, nothing mattered any more, I didn't WANT a future, didn't care about myself, didn't even keep myself clean, change my clothes, brush my teeth, wash the pots anymore, same sheets had been on the bed for 21 months ! etc and more !  

Just one message in particular made something click, It gave me the teeniest bit of self worth back because I was being thanked for some advice about job oppos, and then other people thanked me for making them smile, laugh and cheering them up. 

Claire , I'm saying this to you from one who might as well have been dead but is SLOOOWWWLY being resurrected again (I say 'being' as oppo to 'has been' cos I'm still not sure it will continue.) And I don't care that I'm being deadly serious and dramatic either.  But . . . . Pleeeease stop thinking the worst. Yes, I'm being BRUTALLy and pragmatic in saying, you may NOT survive BC,.  As I said, that's the fear we're all aware of and have.  You have a hubby and kids that love you. I don't have any of that (awwwww!) but..... I made a new friend today. Didn't ever think that would happen whilst just being out and about. Discovered her name was Heather, one of my favourite names because it's so pretty and it was also my Mothers. We're gonna meet up to see a fillem (Irish for film ! ).  

My whole  message is that it made me feel :-    "You never know what hope, help, friendship, opportunity or light there is around the corner"  that can or could make a huge difference . Don't  ever underestimate the power of this forum. We're here for you albeit through the ether, but it worked for me. Please USE it and us as much as poss  to help you on top of your family and friends. You need all the help you can get from every source - just let us know how you're feeling. Don't bottle it up like my bruv did. Didn't do him any good.

Over and out. Love to everyone dellywellydingdong xxx

Catch up with all your news and goss when back from funeral tomorrow x 

[Tandy 4]

Sent you a message lovey...... So devastated for you! This bloody, vicious, bastard disease!!! Trust in your team they' know what to do next for the best! Try and sleep mate, it'll take a couple of days to take this in but you will get the strength to face this next step when it comes........ Promise (I have from goodness knows where!?......) Like to just say a big thank you Claire (and everyone else! 👍🏼) for your love, support, virtual hugs, encouragement and messages? Here for you too Hun xxxx  hugs Tina

[JenJen]

Claire xx sorry about your news xx I dont know what to say that others havent but I am sending you my love and hugs xx

[Caffy]

Claire, I can only repeat everyone's comments, and send you love and hugs. You may not believe it right now, but you CAN beat this b*ggering thing. I had a mastectomy and am now undergoing chemo, while I can't lie and say it's great, it's really not that bad and in the grand scheme of things it's not for long. Hope you get some sleep, tomorrow is another day, and all we can do is take this one day at a time. Chris xxx

[bazza7676]

Claire, Nikki and I sat here and read your post and our thoughts go out to you. We both agree we wish we could say something to make you feel better tonight but we're not sure we can. As others have said, you can do this, everyone is here for you. One step at a time, easier said than done but you'll beat the **bleep**er! xx

[shazza45]

So sorry to hear your news today Claire. Sending love and hugs to you xxx

[Fuffs123]

Claire, sending you big hugs and was so sorry to hear your news, devastating for you. What a bastard thing it is. If it's any comfort, a friend of mine had a similar diagnosis a few years ago but is now fit and well. Treatment will be hard I'm sure but please don't despair. Xx Francine

[familytree]

Bet you can't x we were all thinking of you today. .. miserable news that's made me feel sick for you. We're all linked through this whether we have met or not. We have all had Damn results day so know how you must be feeling. Time to absorb then dust yourself down and get this crap dealt with! X x x

[Cs66]

Thank you everybody. Your support means so much. Can't think straight tonight. I hate this thing. Claire xxx

[Nikki3588]

Oh Claire, I'm really sorry it's not the news you were hoping for. As the others have said, it is still treatable - please don't give up hope. Trust your medical team and go with whatever they suggest. We will be with you every step of the way.

Sending lots of love and hugs your way xxx

[familytree]

Don't be afraid to ask for valium or antidepressants...what ever it takes to make the journey easier I say! Bug hug Claire x x

[julie_m]

Claire I am so sorry that you're having to deal with such awful news, really feel for you my lovel. Sending love and hugs 😉 xxx

[PeggyCat]

Claire, I am so sorry. You really deserved better news than this after all you have been through. It may seem hopeless at this point but I'm sure it's not as the others say. Your consultants will find the best plan for you and you will get through it.

I know from what you have said these last few days how afraid you are of chemo and losing your hair. I was too and I can honestly say that neither of these things have been as devastating as I imagined they would be so far. I am only a "veteran" of two chemos up to this point but am very optimistic that I'll get through the next few months, especially with the support of the people on these threads who, I don't need to tell you, are all bl**dy fantastic.The fear is far worse than the reality. Keep talking to us.

xxxx

[A.Faed]

Oh Claire, not the news you wanted to hear at all. No wonder you're devastated and thinking as you are but please don't lose hope! On the ward the other day, two of the ladies I spoke to (who were in for knees) had both had mastectomies, one 17 years ago and the other about 5 years ago and she had 7/13 positive nodes. That will be able to do a lots with further surgery, and chemotherapy. They also have radiotherapy and tamoxifen in their armoury, so although there is a lot more treatment than you would have hoped to be having, it is there to fight this awful disease. Sending you lots of love and hugs.

Amanda x

[Sissylw1980]

Oh Claire! I was so hoping for some better news for you. Have they said when the full results will be back? Will you need to have a ct scan because of the lymph involvement? By the sounds of it your lymphs have been doing their job and trapping the bad cells to stop them getting elsewhere. I can only imagine how you're feeling at the moment, but we're all here for you, and if need be we can support each other with the chemo. Sending you lots of love and hugs. Sissy xx

[mf]

So sorry you are having to go through all this, Claire. I know people who managed chemo ok, despite the horror stories. Wishing you luck. x

[MadAnge]

Oh Clare - big hugs sent your way. They have a plan for you so you need to trust them. I know that doesn't help your feeling but we are all here. Huge hugs xxx

[Jill1998]

Claire ,sorry it was not the news you wanted to here.As Lorna says it is still treatable ,I've spoken to women on here who have had double mastectomies and 14/14 nodes positive and are still around to tell the tale years after with no spread.Chemo will blast the bugger and good chance meds will stop it coming back.

[familytree]

Bless you Claire, we were all routing for you to have good results. Of course you're devastated! Did you get any grading, size, what type etc? Must be in shock! Was anyone with you to take the details in? As bad as it is its still treatable you have to believe that once you're over the shock! Bloody awful news for you..here anytime to talk x x x