Any triple negative survivors out there?

It’s good to hear you sounding positive Bekah, I was wondering how you were getting on. Sounds like a busy time with hospital appointments, but definitely good things are moving for you. I remember feeling like I was living at the hospital in the beginning. I’m glad you joined the Facebook group too. It’s a really supportive place. Think I might have said hi to you actually ? Sounds like you went through a lot when you had your little boy! But it’s good that the area on your liver is getting smaller and it’s just looking like a blood clot. Fingers crossed it keeps shrinking until it’s back to normal.

Pam, I hope you enjoy the time with your mum for her birthday. This whole thing definitely makes you appreciate every time you are there for birthdays, concerts, days out. Every little thing is much more meaningful now xx

I certainly did Taran. I had an amniotic fluid embolism. Very rare and we’re both lucky to still be here. It really is scary stuff. The Drs who looked after me that night still seemed shaken by it a week later.

Thanks for the links Sue.

Big hugs Katy. Xx

Wow Bekah, that is incredibly rare! I’m not surprised the drs were shocked. I’ve been a midwife 8 years and have never known anyone have one. It’s something we read in the books but never really come across! You certainly like to do things in style ? xx

Can someone let me know the facebook page pls.
Having op for clear margins on Friday.
Marina

Hi Marina, if you search on Facebook for Young Breast Cancer Network (UK) it will take you to their public page. If you message them from that they will join you to the private group. They will ask you a bit about your diagnosis etc, just to make sure everyone added is genuine. Good luck for Friday xx

Sorry, that should say younger not young xx

Hi Colista. I haven’t had Carboplatin in the same circumstances as I had my mastectomy and lymph removal before I started chemo but I am having carbo with my weekly taxol at the moment. There is some evidence that platinum drugs such as carbo are effective in tnbc xx

Great news Den

Thanks ladies. Yes the Drs seemed shocked. I was told they train for it but hope to never see it. The dr in charge that night said he and the team were still affected by it a week later and that we wouldn’t be forgotten. They’ve invited me back to go over it all but I’ve said I need to deal with one thing at a time and getting through this next challenge is my focus. 2016 hasn’t been kind to us though.

My health visitor is seeing if she can arrange for a childminder for a few times a week to help me with our little one. Could mean I get some time just to catch up on sleep etc and to recharge my batteries. I turned down the offer for him to go to a nursery as was worried about what virus’s he might pick up and expose me to. Plus if he got poorly I’d feel guilty for exposing him to that when under normal circumstances I’d BeLooking after him. It’s a minefield of emotions isn’t it. Xx

Hi Pam, You do seem to be having bad luck all round. Good idea to go with hubby and generally be more pushy till you get results.
I am in hospital now waiting to go down to surgery for clear margins.
Marina

Good luck today Marina xx

Hi all had my op today! WLE ANC and Hickman removal! they’ve decided to keep me In overnight so I’m taking advantage of the peace and quiet lol
Only downside is its blooming sweltering in here
I was down in theatre for 3 hours! Will see surgeon tomorrow I think xx Hope everyone is doing ok X Colista xx

Hi Pam
Started exercises last night! BCN said I already have great movement and only taking paracetamol as pain not to bad at all at the moment!
Had a look at my scars and have to say really pleased with the surgeons work just hope he’s got clear margins and I’m brca negative so I don’t need more surgery xxx

Stupid question but how will I tell I’ve got cording? Xx

You can very often see or feel a firm “cord” running along your arm. I had a very prominent bit in the crook of my arm and could follow it either side of what I could see. Like Pam, it hasn’t lasted thankfully. xx

Just wondering, how many years is the longest TN survivor here?

Thanks for the reply Colista. It’s just I’m rethinking my life (which is sooo stressfull - I mean the rethinking & the risk). Looking into giving up work and being poor, but LIVING without always waiting for Friday. I’m not back at work yet but the thought frightens me. Having said that my days now are very lonely, but I thing once I’ve been given the all clear and feeling 100% better it’s the way to go.
xx

Hi marina and everyone else
I’ve just returned from the hospital and been told I’ve had an almost compete pathological response to chemo! None of my lymph nodes were infected and there was a residual microscopic cancer remaining which has been removed and he got clear margins so I can move straight to radiotherapy! Only test I’m waiting for is the gene test so still may need a double mastectomy later on as a preventative measure but I’m over the moon xxx

Amazing news, warcol!

Marina, I did go back to work after treatment (I was only 32 at the time!), but I totally changed the way I worked & went from very long (& often quite stressful) office hours to working freelance, as the thought of going back to the full-on office world really didn’t appeal. And I guess I thought (after everything), life is too short, and if I’m really stressed maybe it’s not beneficial to my health. 14+ years on I am well with no recurrences - and who knows if that decision re work has anything to do with being well, but I’ll bet it didn’t do my health any harm (!) and it has given me a happier life/work balance. So I’d say try and find the balance that works for you, whether it’s no work or part-time work, or a different job. This illness made me realise that I can’t spend my life dreaming about/waiting for the future, as right now is all any of us (not just people like us who’ve been through cancer) have. Best of luck! Xx

Thanks for sharing your story Bel. Did you change your diet, take supplements or coffee enemas??
Also did they call it TN 14 yrs ago, I thought it was discovered/named more recently.

Tom, that’s great to hear. Thank you!x