Hi Everyone
I’m new to this forum. Was dx with tnbc back in feb 2010. Had chemo (tac), surgery and radiotheraphy and apart from usual side effects managed to come out the other side of all of it feeling so positive. Then, this feb 2011 told I had Sbc. I’m still reeling from shock. Have spread to bones and chest and neck. Tried gemzar/carpolatin with some good results and now on eribulim won’t know how it’s working until tests in oct/nov. I feel positive most days but I’m finding it harder each day. I worry about my boys and my husband all the time. I lost all my hair/eyebrows/lashes first time around and now it’s thinning again - last time I walked around bald and didn’t have a care in the world now I’m so so scared it’s making me an emotional wreck. Keep going on retail therapy trips which help but at this rate we are soon going to be broke. I just wanted to say to you how inspirational your forum is and I’m going to stop all this ‘feeling sorry for myself’ and take a leaf out of your books. I’m going to be stronger/positive and make each day a good day. A big thank you to all of you.
Hey ladies
hope you are all ok 
sadie it’s great to have you back we have missed you! Even better to hear u had a lvely time away+ u have another break to look forward to! Sounds lovely + I think we all should ensure we have nice things to look forward to amidst all this crap! Have u got another scan soon? X
laura how are u feeling? U seem to be really struggling with the se’s do I hope ur ok x
Rachel how’s u? Any sign of the new arrival? Bet u are so excited wot a lovely distraction! X
claire- as ever I’m thinking of u + hoping the breathlessness eases soon x
Sarah how are u doing? U fully recovered from the nasty virus u had? Hope so x
scrapper how are you? Let us know how ur getting on x
linda- haven’t seen you post lately hope u are doing ok Hun x
jo (tara) again no posts from u in a while hope ur well as can be x
jo (hope) how are u doing? Good I hope x
Kelly have you had scan results yet? Hope tgey were better than expeced lets know how u got on x
amberlouise- haven’t heard from u in a while how are things?
Hello to any1 else I’ve missed too x
well only 1 day to wait now til I see the onc! Hope she agrees to book a scan asap as I feel I’ve waited forever (my own fault really for cancelling appt to go away!). We have defo made tge most of my treatment break- fab holidays, lots of fun times etc. I’m shattered the last few weeks have been hectic bt I’ve had a ball. Vfest was amazing there was a gang of us and we had a scream! Drank far too mch lager, lost my voice + probably overdid it but I fully inend to make the most of my well time. Drinking herbal tea + eating salad all day isn’t going to change things so sod it I say! My symptoms have calmed down thankfully- still feel slightly strangled wen lying down but general breathing is good. Tons of walking at tge weekend, some uphill + I was fine. Collarbone still swollen but no bigger I think. Defo feels like a swollen node in chest too. Chest wall around scarline is bad- so sore at times. So hoping the next treatment helps really don’t want the local disease to break through the skin. Had 2 heavy periods in less than 3wks totally bizarre + unlike me as I’m usually regular as clockwork. Hope it’s not a sign of anythng sinister going on…
Stillhoping to fit in a break to eurodisney in the next month or so. Gona wait til scan results are in bfore planning anything tho.
Will let u know how I get on tmoro fingers are crossed for us all
tina xxx
Looks like I’m joining you after all 
just waiting to see consultant. I have 2 large chest wall nodes and a possible auxiliary lymph node. I was node neg at diagnosis in may 2009. Not sure whether that makes me a stage 3 or not. Bit of a bummer hey. Not sure what treatment is likely to be but gonna read this whole thread and I’m sure I’ll get loads of good advice xxxx
Worse bit is figuring out how to tell my folks who are on holiday in Ireland till thurs.
Love and hugs xxxx
hi bubbles and lulu, welcome to our gang (that no-one really wants to be in but there you go )sorry that you have had to join but loads of lovely ladies on here to help you along ,hi sadie welcome back glad you had a great time,and hi tina hope your onc gets everything sorted soon and you will feel easier i am sure, our little one is due in just over a week will be so emotional, thinking about my hubby loads so will be such an emotional but lovely time, i am doing ok on xeloda but do feel tired have more scans on 2 sept and am already bricking it !all outer lumps more or less gone but have felt 2 amall nodules above mx am sure they werent there before and am already stressing that it beginning to fight back will have to see but i really ache everywhere, hips shoulder and back but will have to pray its just the chemo,sending love and hugs to everyone in our team xxxx
Hi all yea Tina se on chemo not been great not feeling to good today my mx scar hurts v tight right boob hurts so thinking here we go again maybe just me feel sick and ache day 14 today hoping pick up going away tue got loads to do meant to be going shopping tomorrow typical gd luck for onc tomorrow hope everyone else ok
Hi all on here!
Sadie - welcome back to dear old Britain! Glad you had a lovely time in France - we were all thinking of you! Glad you enjoyed the V Fest., Tina, so sorry to hear of your worries and will be there for you (in spirit!) for your app. tomorrow. I have been thinking too of Claire - really hope your breathing probs. have been lessened a bit -love to you across the cyberspace thingies. Fairyqueen - tell us all when your gorgeous baby arrives - give us all the details - I bet you all can’t wait! Linda - have you started your neck rads yet? - hope it goes well. Love too to Laura, Jo and Jo, Kelly, Scrapper and evryone else - hope I’ve got everyone! Welcome to Bubbles and Lulu.
Thanks for asking how I am, Tina, you are so lovely to remember us all! I still feel a bit fluey, but getting better. The terrible pain in my chest and underarm has gone, thank God! I think it was an infection in the lymphoedema. I’m not a baby with pain, but I cried buckets with it before I got to the Drs. I am in total admiration of the women on here who cope with chronic day-to-day pain and manage to carry on.
Wishing you all love and strength,
Sarah xxxx
Hi All -
Tina - you are a starrrrrr keeping us all in your thoughts and remembering us all! But now is the time for us to send you BIG LUCK and HUGS (Xx) (Xx) for your Onc meeting. I do hope they listen and you are able to think straight!I hope someone is going with you and than Dan gives you a big cuddle whan you get home. Do let us know! More hugs!!
Sarah - so glad the pain has eased! Take care!
Laura - Do hope the SE ease before your holiday. Where are you off to? Somewhere warm? How are the feet? New wheels helping?
FQ - Do hope the emotions of the next few weeks - with their highs and lows are kind to you. A baby is a wonderful focus! Scanxiety is stressful! But is you can feel some shrinking that is good and I hope the chemo is the cause of the aches! It is harsh stuff - even is it is clever!
LuLu - Hi and welcome! I hope you have got some info from this thread. However, im sure one thing you have gathered is the vast range of treatments that we are all having. The scary thing is not knowing so I hope your team put a plan together soon and then you can move forward. I was also node neg at diagnosis (Jan 09) but somehow some cells sneeeked through nd ive got bone and lung mets - but a good reaction to weekly Taxol / Axastin. Why not wait till Thursday nd tell your folks face to face. Hugs and tears are best in person?
Hi Bubbles - please dont feel you have to hide feeling cr**. We are not all positive and ‘fine’ on here and seem to take it in turns to fall appart and need support. Thats why we are here! It is all PANTS afterall! But there are some fab treatments and I really have a good quality of life and LOVE IT! But after my secondary diagnosis I was scared, planning for when I am not here, hugging my children a lot and cruing buckets! So, things do move on!
Love and smiles to everyone tnbc with add ons!!
Sadie Xx Xx
I am pretty new to this site but just reading your messages it quite uplifting and sad at the same time. You don’t realise just how many people are affected by this disease. I was diagnosed with TNBC after my mastectomy last year in May. Life can be hard sometimes but it is also pretty dam good too. I hope you are all ok.
Luv Lou
Hi ladies
idid post on here last night but it seems to have disappeared into cyberspace?!
I wanted to welcome bubbles + lulu + wish them both well
lulu- so sorry it seems other nodes are also involved. Tnbc is a totally different beast it doesn’t follow tge rules + does what it wants even when the cancer is small + node neg. I’m hoping ur scans are otgerwise clear- when will you be having them? You know your stuff + I’m sure ur in great hands so try to stay positive. Can all the affected nodes be surgically removed? Please keep us posted. Stay strong xx
Bubbles- sorry you gave had to join us. I know what u mean about the fear for children + our hubbies. I’ve given up worrying about myself it’s my little boy + hubby I’m scared for. How old are u? I’m 33 + my boy is just 2. We were dx at similar times- my dx was 27 jan 2010. All the best xx
hi to everyone else
had a text off claire last night she is quite poorly, the breathing had worsenend + she was in hospital. Please keep her in your thoughts + prayers. I’m praying they get her off the capecitabine which clearly isn’t working, and onto something that improves her breathing. This damned disease makes me so angry. I am hoping to go + see her when she’s up to visitors. Big (((hugs))) claire xx
well it’s d-day for me. Off to gullivers world 1st with my little man, niece + my mum. Should distract me 4a few hrs!! Will let u know how I get on later…
LoL
Tina xx
Hi
Thku for all for your wonderful supportive messages. I’m not feeling so alone anymore.
Tina - I wish you all the best for today and am sending you lots of hugs and cuddles - keep strong.
Sadie - thku too. I feel so exhausted somedays. It’s such a battle trying to remain positive all the time but having such supportive friends like yourself and everyone here makes it easier.
When I was first dx suddenly I was surrounded by people who were able to tell me their own stories of this dreadful disease and of others and their courage and their recoveries but since my sbc dx I do feel so swamped by it all. Tiredness and having to take endless painkillers to keep the pain at bay is my biggest moan at the moment. I keep myself from going mad by setting up projects around the house or in the garden or adding to our endless menagerie of pets - so far, last count - three cats (all with issues), four very well mannered hens (their eggs are fantastic and when I lost my taste buds first time around these were the one stable thing I could taste), many tropical fish and one very handsome Newfie dog soon to be accompanied by golden retriever puppy this weekend! My husband and teenage kids have been fantastic throughout and I’m so proud of them all. My eldest is off to uni. in sept. it’s been hard watching him pack up. Everytime I go near his room I end up an emotional wreck but I’m determined he’s to go off and enjoy every moment. We are going to decorate his room together next week so he knows he can return whenever he wants too and it will give me an excuse to do some more retail therapy-Ikea here we come! To everyone on the forum - keep smiling we need each other so much - x bubbles
Morning all. Thx for letting us know about Claire, that is so so horrid!!
Claire, not sure if you are reading this, but just wanted to send my love, support, smiles and anything else that might help. Hugs. Xx Xx Xx
Bubbles, sounds like you are a DIY expert!! Pls visit here after you have done your sons bedroom!! My local hospice was FAB for helping me with pain medication. My gp referred me as they have specislists. May be worth asking? Where are your mets? Sorry if you’ve said nd I missed it.
Tina, enjoy your day out nd live in the moment, not in the consultants room!
Sadie Xx Xx
Hi all!
Just wanted to say Good Luck to Tina for today and also, to Claire, that I have been thinking of you a lot…I’m not much one for prayers, but I do pray that your discomfort can be eased. This is all so cruel, there are no adequate words to express the injustice of cancer. Hope you see this to know that others, who you’ve never met, are thinking of and supporting you.
Love, Sarah xx
sending lots of hugs and love to claire xxx
Hi, just checking to see if there is any news from Tina? Hugs waiting…
Sadie Xx Xx
Hi everyone
Thinking of your Claire. Let them look after you and get better soon.
Tina - how did it go? This is my 2nd scan on capecitabine. SEs are tiredness, tummy upsets which are getting worse ie: started as uncomfortable bloating to grips and diarrhea. Also your hands and feet get very dry and crack. It hasn’t been too bad only just started to happen but I moisturise regularly so hopefully keeping it at bay.
First scan showed stabilisation. I knew after recent holiday new ones were growing in neck - feel like a Kardasian from Deep Space Nine(!!!). Second scan shows new growth in armpit opposite to mx however the onc feels that the important nodes in my chest are stable and if nodes in armpit not bothering me to not worry and keep on capecitabine as it seems to slowing the spread. She says she will give me radiotherapy on my neck when they get too bad ie: when I start to wheeze or can’t breath!! So feeling a little better today though I must find a strategy to stop thinking about dying all the time.
I am glad you had a super holiday in France Sadie.
Welcome Bubbles and Lulu - talking does help.
Hi to everyone else - keep positive.
Love Kelly xxx
Hi everyone
Thinking of your Claire. Let them look after you and get better soon.
Tina - how did it go? This is my 2nd scan on capecitabine. SEs are tiredness, tummy upsets which are getting worse ie: started as uncomfortable bloating to grips and diarrhea. Also your hands and feet get very dry and crack. It hasn’t been too bad only just started to happen but I moisturise regularly so hopefully keeping it at bay.
First scan showed stabilisation. I knew after recent holiday new ones were growing in neck - feel like a Kardasian from Deep Space Nine(!!!). Second scan shows new growth in armpit opposite to mx however the onc feels that the important nodes in my chest are stable and if nodes in armpit not bothering me to not worry and keep on capecitabine as it seems to slowing the spread. She says she will give me radiotherapy on my neck when they get too bad ie: when I start to wheeze or can’t breath!! So feeling a little better today though I must find a strategy to stop thinking about dying all the time.
I am glad you had a super holiday in France Sadie.
Welcome Bubbles and Lulu - talking does help.
Hi to everyone else - keep positive.
Love Kelly xxx
Claire so sorry your not to good hope they can sort you out
Tina how did it go today hope y ok
Sadie hope y ok after tax
Hugs to everyone else hope y all doing ok been shopping today sch uniform holiday clothes for my son cost a fortune but so love him to bits bought myself new bag like I need another one hi to everyone else xx
Hi everyone,
i always read this thread, i like to know how you are all doing as i have a few buddies on here. I want to send clare my love and very very best wishes that the medics find something to help you. Huge hugs. And Tina, have been wondering how you’ve got on today too and have been sending you cyber positive thoughts.
Take care everyone
vickie
Hi ladies
just a quick pat to update before bed. Thanks for all ur positive vibes today you girls are lovely
well onc was very nice + positive, playing everything down. She is equesting a ct scan which should be within a fortnight but she was happy as I’m feeling + looking well. We discussed some ‘what ifs’ + she told me she is reluctant to treat progression unless it’s in my liver or lungs. She said our treatment options are limited + she doesn’t want to give me chemo for localised/ node spread as she doesn’t want to make me sick unecessarily or use up a valuable treatment option too soon. I didn’t go into 1 about it with her as it’s all hyperthetical speculation so I will have the discussion once the results are in. I’m obviously hoping + praying my lungs+ liver are still clear + any progression is localised + minimal. I will try not to fret too much whilst awaiting the scan appt. Famous last words eh…
Kelly thanks for letting us knowhow u are. Great that things are still looking stable on the xeloda long may it continue I have a dodgy node in armpit on opposite side also. Hope u can manage the se’s ok + this good news gives u a bit of a boost x
vickie- thanks for your kind words + well wishes as ever. Hope u had a fab holiday x
no word off claire today I really hope she’s feeling lots better today + is feeling the benefit of all our positive vibes x
will catch up properly with every1 tomorrow. Love to all
tina xx
Tina im keeping my fingers crossed for you hunny x