Hi ladies,
If you really wish to understand more about what s being done for TNBC - you might find these links of help.
Please only read, if you feel up to it, as it is a scary time, but I do hope it gives you some hope- so much is being done and these links do not yet talk about the most recent trials, which have started in the UK.
breastcancer.org/symptoms/diagnosis/trip_neg
Hugs
Sue xxx
Thanks Anne. I need to get to where you are head wise but glad to hear it’s normal to feel panicky sometimes. You’re right, it’s having the little ones that makes it really hard. I’m scared because I feel like my life has only really just started. Hi to Beckah. I was diagnosed when pregnant with my little boy. I also have a 4 year old girl. Terrible this is happening to anyone but it seems especially cruel when you’re a young mother. Listen to Taran, I still haven’t quite come to terms with the situation myself xx
Thanks ladies. I’m so glad I’ve found this forum. My husband is doing his best to be supportive but he’s scared too. We do have lots of suport from friends though, as well as hubbies support team (24/7) but it’s great to be able to chat to others who are going through it too. Makes it feel less lonely. Xxx
How are you doing today Bekah? Hope your little one is keeping you occupied!!x
I’m doing ok today thank you. You?
We’ve done some retail therapy. Bought a jumperoo and some other toys to keep little one entertained. Planning for days after chemo when energy may be low but he needs entertaining. It’s helped keep our minds off things today. I find evening/night times and mornings when it gets to me more. When I’m doing normal life things I’m distracted for a while.
Yep, evenings and nights are not your friend!! I used to lie awake for hours thinking. Luckily at the moment sleep is not a problem thanks to chemo tiredness…slept most of yesterday and still slept all night!! Retail therapy sounds good. Make sure you treat yourself as well as baby though.xx
Thanks Sue. I’ll look at those xx
Sorry you’re surrounded by cancer 1852. I’m sure they’ll be grateful for the support.
Pam, I saw the mention of dark nail varnish through treatment. Does it need to be a particular type of varnish or will any type do? Xx
Thanks Sue
Looks like a good excuse for some retail therapy.
Hugs Bekah xx
Hi Kat, we are very much out there, not just surviving but thriving. I was diagnosed in 2009 and I am still very much here! Stay strong and believe that the chemo is extremely powerful…will be even more tailored to your needs by now. I had a mastectomy too didn’t do rads but you are hitting it with everything you can so you ae doing the very best you can.
My thoughts are with you, it’s a tough journey but there are amazing moments when you feel you can do anything, at least that;s how I felt on my good weeks mid chemo. I hope you have those moments too but even if you don’t, believe that the horrid swamp juice will do the job it’s been given. Good luck to you xx
Hi all. Feeling a bit ropey today after chemo yesterday. I’m always looking for positive survivor stories but most I come across had small tumours, no lymph node involvement or vascular invasion. Does anyone know of long term survivors with lymph nodes and large tumours? Xx
Anyone???
Hi Katy, I saw this shared somewhere else today. Although not triple negative, this woman had a large, aggressive tumour with lymph node involvement and is now 9 years clear (blog is 2 years old) so might be worth reading? I’m sorry I can’t be more help. Are you on Facebook? If you are, I really recommend joining the Young Breast Cancer Network (UK) group. The support on there is amazing when you are struggling with things xx
Oh, and the link would help too ?
Thanks Taran and Pam. That’s a great story Taran I just wish we had something like herceptin! Pam I long for the day I don’t think about it everyday. I just feel tormented by it every waking moment. I just want the long life with my children I always expected. Xx
Thanks Bel, I’m glad you’re doing so well. I do panic a lot about the tn element and also because I had two large tumours with lymph involvement. I just never expected something like this at the age of 36 with a very young family. Rightly or wrongly I am still finding it all so hard to come to terms with xx
That’s a great analogy Bel. Katy, it’s so very normal to struggle. I do think time will help. It’s just getting to that point. I find it hardest when I think about the possibilities for the future for my children. But I plan on being like Bel and still being here to see them grow. So until someone proves otherwise, that’s just how it’s going to be!xx
Thank you ladies for your support. Taran you’re always so positive, I really admire you. Maybe I’m just finding out I’m a natural pessimist and never realised! I think it’s just the total fear that makes me think the worst xx
I’m not always positive, honestly. I have bad days just like everyone else. But I make sure they are few and the positive days are many. Over thinking the whole thing won’t help me and won’t change what will be either. I just hope and pray that I am destined to be around for a long time yet. Try and believe in your treatment. You know that at least at the end of treatment you will be cancer free. The surgery and chemo will have done their job and that is the most we can ask for.xx
Thanks for sharing your experiences ladies. I’ve joined the Facebook forum… They’re so lovely too and I’m finding it somewhat addictive. Will have to be careful it doesn’t take over.
I’m going in tomorrow to have the first set of lymph nodes removed. Seeing the oncology department on Tuesday, the genetics team on Friday, following Monday I’m having a heart scan and all being well I’m starting chemo a week on Tuesday. So relieved things are moving.
I felt like my consultant was hiding something from me at the prior appointment. Turns out she was. They’d seen on the ct scan I had when went through the traumatic birth of my son, a shading on my liver. They weren’t sure if it was cancerous too, anyway the recent scan I had showed this has shrunk and they now think it’s a blood clot, apparently I have loads of them around where my uterus was and where all the surgery was carried out. Not surprising as I was black and blue for weeks around my middle.
Feeling more positive now and trying not to focus on the what ifs but on the good things like my baby boy to keep me upbeat. Xx