Just been diagnosed, BC - triple negative

Hi there,

I joined the group a couple of weeks ago after my scan and biopsy and found it useful and supportive reading what everyone is going through and their advice whilst we all face the C word!

I've now received my diagnosis and plucked up the courage to say 'HI!' :)  I'm still reading up on all the booklets i've received. A strange feeling really counting the days down to your appointment like a holiday without the excited feeling and now coming home with loads of booklets and not holiday brochures.  i feel strange that i have a sense of relief but a strange relief as I do have cancer and not the all clear.  Does anyone else have these mixed feelings?

I've been diagnosed with stage 2, grade 3 and triple negative.  Well from my understanding, i'm waiting for the confirmations to all come in the post.  I remember them saying 18 weeks chemo, 5cm tumour, lymph nodes, masectomy, radiotherapy....

I still feel very detached and like they are talking about someone else as i dont feel ill.  I was hoping to be pregnant :( so feel very sad tonight that is unlikely to happen now with my diagnosis and that i'm 42.

So mixed feelings all around tonight. 

Mich x

 

 

Parents
  • Hello ladies, hope you don't mind me gatecrashing your thread, but I've just read through it all and it's made me feel so much better, your all so nice and posative

    I was diagnosed with triple negative BC in June, I am on my 5 of 8 cycles of chemo, these last four being Carpoplatin and paxataxil, there breaking down the paxataxil to every week, i have my last chemo on 6th January and although we shouldn't wish our lives away, I can't wait, after that it will be surgery and radiotherapy, I have three lymph nodes under my arm and two lymphs under breast, but on last scan the two under breast have cleared, I'd like to ask if any of you on paxataxil oy carboplatin have had fuzzy head, I can't explain it but fuzzy slight dizzy head, I'm at day 10, my other cycle I felt so much better by day 10, it's not really bad but just annoying as I can't drive while feeling like this. Again lovely to read all your posts and really hoping your all feeling well, xxx

  • Hey Davia

    Of course not, welcome to our group that no ones want to join haha!  I was diagnosed in August so just had my 3rd course on Tuesday.  Not feeling too bad at the moment, fingers crossed it stays that way.  I have 1 more of EC then i go onto the carbo / paxo and paxo weekly.  Hope there are no major side affects of these.  How you doing on these drugs, just the dizzyness.  

    I have in my lymph nodes too so will have to have all of them out, little worried about the opp but one day at a time eh.  I'm also waiting on my brca test, guess they will send a letter confirming yay or nay.

    Yeah i could drive for a few days after my second one, felt like i was on drugs all week!

    I managed the cold cap on Tuesday, but hair is thinning quite a bit so not sure if I'll carry on .

    Hugs

    xx

  • Hi Linda, 

    I'm not feeling to bad at all thanks, the weekly Taxol isn't so bad, it's the combo that hits me at about day 3, I get very emotional on it for some reason, oh and yesterday my eyebrows decided to shed a load of hair, how strange, my hair on body and head is growing back slowly but now my eyebrows decide to do one, joy, just when I thought I'd hung on to a few strand, hahaha good old wonder brow does the trick though oh I booked on the feel good look good course today, February 17 is the only one I can get on as there monthly and on Mondays, my chemo is Monday, but something to look forward to unless I'm having surgery by then

    Yes I get that with the wig, I feel more self conscious with a wig on than my scarves or hat, funny that but I'm always worried the wig had moved or become lop sided lol 

    How are you feeling, good to get out shopping or just out isn't it? Hope your feeling as well as can be, keep well xxxx

     

  • Hi Mich 

    How you doing? Have you mastered the scarf tying?

    Hope your feeling well and enjoying those brisk walks along the coast, I've been out walking round a lovely country park near us, bit muddy but lovely to hear the birds and get some fresh air,

    Take care xxxx

  • Hey ladies,

    Thank you, i'm doing ok after yesterdays double cocktail.  The drunkeness furniture walking hasn't started yet and i actually went out to visit my sister today.  She helped me with ideas on putting my eyebrows on lol!  I also went out with one of the scaves i got for my birthday and managed to tie it with a rose / knot on the side.  My sister said it is very cute and trendy (she's 13 years younger than me) so must be good!

    I'll probably just chill at home tomorrow and take it easy. Ah that's great you have your date now booked Davia, so cant wait for mine.  I cant wear miscara at the mo as hardly any eyelashes left so practising with eyeliner!  I also look pasty and peaky but dont want to end up looking like a clown with too much blusher or bronzer.

    Did i say i'm going to Herne bay on saturday to have the fringe of my wig trimmed.  its really in my eyes and i look like one of those shaggy dogs lol!  When i initially fitted it i had hair so she said i would probably have to come back to have it cut.  So I'll see how i get on iwth it, but like you said the scarves are really comfy to wear and i like the variety of all the colours!

    Aww and i did a silly thing on Tuesday this week, i missed my appointment with my oncologist, doh!  It was at canterbury and i didn't read the letter probably and thought it was at my hospital.  So very annoyed as only realised when i got to the hospital they said no shes not here today.  I've called to reschedule but they said shes quite booked up to April. Hopefully they can squeeze me in.  No my finest moment eh #chemobrain.

    I'm still on a sweet tooth mission but trying to be good with smoothies but i biscuit cupboard is overflowing! I've been quite partial to crackers from xmas with butter though, a few nibbles before dinner haha!

    Hope you all well ladies

    xx

  • Hi Mich,

    I'm glad you're doing better with chemo. I had my last one on 27th but still feel very week and still have chemo brain. The funny thing is I can hear myself talking rubbish but can't stop it!! My husband says 'no change there' lol.

    I have a mamogram and ultrasound on 17th and get the results on 24th, I can't pretend I not bricking it!!!

    Davia I also get very emotional some days, it comes from nowhere.

    Linda, I didn't have a picc line either. it was never really mentioned until the chemo nurses complained saying I should have had one!!

    Take care ladies, love to you all

    Sue xx

  • Hi Mich

    Hope your feeling OK today after the combo, I have my last combo on Monday then two pax, one a week, looking forward to getting my picc line removed then ill be able to get back to my bells before surgery

    The scarf with rose on side sounds great, if I had known I wouldn't have bothered buying a wig, I have wirn mine a handful of times, and being winter it's so easy to pull on a Wooly hat when going out for walks. 

    Hope you get an app with your oncholigist, what a disappointment, I haven't got an appointment with my oncologist, don't quite know when I will get dates for scan and surgery, I'm happy with finishing chemo but also apprehensive for the next journey

    I find my taste buds are all over the place, some days I have taste, others I don't like salt then I crave salt, I don't seem to have a sweet tooth thank goodness, I have put om some weight mind lol

    How many cycles have you got left Mich? Have they told you what surgery your having? I was told full clearance on lymphs in left arm but no mastectomy, I was suprised with that, I really thought they would do mastectomy, but I think it all depends on scans.

    Hope you don't feel to bad on this combo, keep well 

    Sending hugs xxx

  • Hi Sue

    They say it takes time to get over chemo, let's hope your feeling a lot better soon, I know what you mean about talking rubbish, when I'm on steroids I can't stop talking lol

    I think we all "bick" it when we have scans, I think we always will I really hope it goes well for you,

    Hugs xxxx

     

  • Hey ladies, 

    How's things? I was doing OK after my combo no drunk days but it all caught up with me this weekend and now my body is so tired and achy. I did some walking around harbour on Sunday nothing major but felt it this morning, eso as I had to wake up early for my pre assessment. Felt like I had been hit by a freight train! 

    Today I felt rather bleugh and chilled on the couch and read. Wasn't also pleasant standing in the scales and seeing my weight go up by a kg every week! I know small things but they add up when u feel low eh. My face seems to round and puffy, esp now I have no hair! 

    I have signed up to another meditation class on Thursday eve, just paxo this week so hopefully be OK. 

    I'm feeling a bit apprehensive today, I said to my hubby I can't see an end in sight at the mo and can't imagine myself looking 'normal' again. Do you ladies have that? I guess Its normal as we are still going through it but I just can't visualise myself being back to the way I was.

    How u doing Sue?  Do u feel any better chemo is finished? Yeah I deff have chemo brain at the best of times, steroids haven't done much to me this week, hmm think it's this week I'll end up being the duracel bunny!

    Thinking of you ladies xx

  • Hi Mich

    Bless you, I know how your feeling exactly, I have sat there and cried, well sobbed and said the exact same thing to my husband, will I ever be me again, it's huge what we're going through and as brave as we try to be the chemo runs us down, especially the combo, it's horrid, I had my last combo today thank goodness, but the paxol has decided to give me a rash, ON MY FACE so no eyebrows bum fluff for hair and red blotchy face but if its making us feel and look this bad, just think what it's doing to the cancer I also get really frustrated that I don't have the stamina I used to have, I've noticed if I do to much one day the next day I'm flat out on the couch exhausted, so don't feel guilty about having a compleat slob out, your body is working hard, that's what the nurse told me when I told her how I felt. Were nearly at the end of Chemo, and although that's bloody great in every way, it's also a bit scary as we have to get on a different bus, surgery and scans, I'm feeling very mixed emotions and that confuses me as I have been crossing of the days to be rid of chemo, but as my friend said, if you can do chemo you can do anything keep strong, know its the combo draining you, I will be in the same place as you by Thursday my hubby can time it down to the minute, every combo cycle has followed that pattern, I get my kleenex out, and just let it go, its a release. You will be you again soon, so I'm reliably told by friend who went through this 6 years ago Lots of big virtual hugs ,

  • Hi ladies,

    It seems we all have the same emotions and feelings. I still have days when I have a total meltdown but unlike Davia mine have no pattern.

    Mich, none of us look our best right now!! Although I used the cold cap throughout, I sometimes wonder why I bothered!!! I used to have long blond thick hair and now it is short and really fine. I need to cover my head to go out. Also, hardly any eyebrows on top and none on the bottom. I have been steadily gaining weight, only a pound at a time but it all adds up. I really hate looking at myself it the mirror as it isn't me looking back. We need to remind ourselves that it is only temporary, I know it's no consolation but there is light at the end of the tunnel.

    Davia, as you said mixed emotions at the end of chemo. I am so scared that my lump hasn't shrunk as I can still feel it. still, ultrasound and mamagram on Friday and results the following Friday. I'm not sure what will happen if it hasn't shrunk.

    Mich, still not BRCA results I take it?? The waiting is the worst.

    Stay strong you lovely Ladies, this time next year we will be on our survivors thread talking about our lovely long hair and how all this is now a distant memory.

    Love and strength to you all,

    Sue

  • Hi Sue,

    I hope Friday goes well, I have that feeling to, what if chemo isn't working but my oncholigist said all the ladies feel like this coming to the end of the Chemo, let us know how it goes and sending good posative vibes your way x

    Niknik How did your appointment go, was thinking of you, with my thee boys, there older than you two little ones, I waited until I got the full facts and sat them down and told them, but yours being so small maybe  wouldn't understand, so if it were me I'd keep it very simple, I'm sending big virtual hugs x

    Hi Claire

    Last EC that must feel great, I to had a very bad time on EC it wiped me out everytime so I feel for you 

    I think we're all feeling more emotional coming to the end of chemo, it could be the accumulative effect of all the chemo. Good luck for your opp on the 7th what are you having? I'm due a pet scan after my chemo is finished, can't say I'm looking forward to it, I hate ant scan now, go into anxiety mode, but I'm hearing that you all feel the same. 

    Oh bit of posative, I went shopping yesterday, got hot so took my hat off and walked around with just my bum fluff hair, I have a light covarage on head, it's white all over lol I started going gray age 26 but the lady on make up counter said its the in colour, get me lol, shame about the style I said, she laughed but also said it looked nice, she was being kind, I felt a bit naked to begin with but after a while It just felt natural. Hat went back on when I got outside, my head was cold lol

    Oh don't talk about weight, I have put so much on and what with the steroids retaining fluid my face looks bloated and red with the paxa side effect rash, I have been told not to diet until treatment is over, I'd find it hard as my appetite is crazy :p 

    Well lots of posative vibes to you and sending big hugs, keep strong ladies xxx

     

Reply
  • Hi Sue,

    I hope Friday goes well, I have that feeling to, what if chemo isn't working but my oncholigist said all the ladies feel like this coming to the end of the Chemo, let us know how it goes and sending good posative vibes your way x

    Niknik How did your appointment go, was thinking of you, with my thee boys, there older than you two little ones, I waited until I got the full facts and sat them down and told them, but yours being so small maybe  wouldn't understand, so if it were me I'd keep it very simple, I'm sending big virtual hugs x

    Hi Claire

    Last EC that must feel great, I to had a very bad time on EC it wiped me out everytime so I feel for you 

    I think we're all feeling more emotional coming to the end of chemo, it could be the accumulative effect of all the chemo. Good luck for your opp on the 7th what are you having? I'm due a pet scan after my chemo is finished, can't say I'm looking forward to it, I hate ant scan now, go into anxiety mode, but I'm hearing that you all feel the same. 

    Oh bit of posative, I went shopping yesterday, got hot so took my hat off and walked around with just my bum fluff hair, I have a light covarage on head, it's white all over lol I started going gray age 26 but the lady on make up counter said its the in colour, get me lol, shame about the style I said, she laughed but also said it looked nice, she was being kind, I felt a bit naked to begin with but after a while It just felt natural. Hat went back on when I got outside, my head was cold lol

    Oh don't talk about weight, I have put so much on and what with the steroids retaining fluid my face looks bloated and red with the paxa side effect rash, I have been told not to diet until treatment is over, I'd find it hard as my appetite is crazy :p 

    Well lots of posative vibes to you and sending big hugs, keep strong ladies xxx

     

Children
  • Hi Ladies,

    Davia, well done for taking your hat off in public, I wish I had the confidence to do that!! I found EC easier than Taxol, it's probably the dose but it's all so unpredictable.

    NikNik, have you had your results yet? let us know and we will do our best to support you whatever the outcome.

    Caire, great to hear from you. Are you back in the UK. Wonderful news about the tumor. Mine still feels the same size which is a worry but Friday is D-day.

    Mich, how are you feeling now? I'm glad to report that my chemo brain seems better. No silly mistakes or talking total rubbish (i hope)

    Love to you all,

     

    Sue