Thank you to everyone for welcoming me and taking time out to answer some of my concerns. I really appreciate your replies.
I’m very up and down, which I suppose is to be expected. I’ve come up with a few questions I need to ask so I’m waiting for the BCN to call me back. I’m particularly concerned about the fluid they say is around my heart and what that means. I’ve got a 4 year old, I don’t want to be dropping dead when there’s just the two of us in the house!
It’s my birthday today, probably the most rubbish birthday I’ve ever had, but hey, at least I’m here for it and I’m determined to count my blessings.
Lulu, I think you must be the famous Lulu I’ve heard so much about. I’m feeling a little star struck that we’ve had our first cyber exchange. Here’s hoping everything goes well for you on Thursday and you don’t suffer from any post op sickness. I’ll keep reading to see how you get on.
Gingerbud, I don’t know the full story but it sounds like you’ve had a rough time with your Onc (I call them Onions now - long story!) I hope you manage to get the answers you need and get on the books of someone you can trust and work with.
It will take me some time to catch up with everyone’s stories but a massive thank you for making me feel welcome here. You all sound so positive and fun loving, I think this is exactly what I need right now.
Hi ladies just a very quick post to let you know my scan news…
I can’t quite believe it but all my organs are normal!! Nothing has changed since post-treatment scan on 1st June except for one node. Apparently there is an enlarged node in my chest- the report didn’t say the size so onc is following that up + I’ll no more next wk. It is in centre of chest so rads could be an option providing it’s outside of previous rads field. Seeing new onc next weds so will discuss next steps then. I’m in shock but in a very good way + I’m so relieved I’m still defying the odds especially after more than 3months free of treatment!
My onc was pleasant + whilst it was initially awkward I was glad to have the opportunity to explain my concerns etc in a polite way + to clear the air with her. She backtracked on several things and was suddenly much more positive about my options etc (coincidence?!).
Have made arrangements to see a friend this aft so will be back on later. Just wanted to share my good news
love to all xxx
Tina, that is just the best news! And in time for you to enjoy Disneyland just that bit more! Can’t help smiling and spraying exclams around!!!
Lavender
xx
Hi all tina that is fab news so pleased for you glad u have sorted a new onc to I spoke to my old bcn today wish I hadn’t now was asking her view on my condition for work purpose she sd well it’s terminal like u know which means as y young you will die of this illness but then you knew that yes I did but it’s not what u want to hear these plp really need to think about what they say so it’s been on my mind all day still a new day tomorrow move on going away for 2 days so need to focus on that so plsed all ok with u hi to everyone else tc Laura x
Tina i am so chuffed for you. Great news
good luck on thursday lulu and hope you’re not too anaesthetic vomity. I react like that too, it just adds insult to injury.
Hi all
Fabulous news Tina with no progression - you are doing really well
Good luck sadie for results and hope surgerybsmooth for you lulu and not too bad after anaesthetic.
Welcome Wendy and don’t take notice of prognosis - you are you and we are all different . I too have numerous mets but responding to treatment and although not pleasant on chemo determined to keep going as have young ones too, 15 months, 3, 11 and 14.
Am sorry Laura for insensitive comments - think they just do it all dayand forget magnitude of situation for us!! I was upset when I read palliative chemo on letter but although knew can’t cure I have to believe and hope in future as we all do.
Chemo delayed this week as I had bad cold and chest from baby
who I was at hospital with at weekend. Now we all have D/v. Husband too so all a bit ropey.
Hi Ladies
Hope your feeling ok this evening
Tina what brill news really chuffed for you, and enjoy your trip to Disneyland tomo.
Lulu I’ve had a hic man line in, about 10 wks ago, it’s been fine, my veins were terrible after all the chemo from 2 years ago.
Hi to Wendy, I’ve only found this site in last few weeks and it’s been so supportive and comforting, with all the luvlly ladies on here, it’s reasurring.
Sadie thanks for msg, my nose is a bit better this week, been using loads of vaseline which has helped,.
Sarah hope your better soon.
Hiya to all ladies
Sending you all luv and hugs
Xxx Sandra. Xxx
Sorry your bcn was so insensitive - there are ways of putting upsetting information instead of blurting it out like that. Hope you are feeling better and enjoy your time away. Love to everyone on here.
Hi Sandra - Glad your nose a bit better. Looks like it is a common SE of Avastin! Ho Hum!!!
Hi Kelly - Im trying to go to the B’ham secondary day next month too. Wound be nice to meet! Im just waiting for the scan results on Monday before planning for def!
Hi to Sarah68 (why the 68??)Hope you got through the homework!!
Hi Laura - How insensitive! I hope your few days away have given you space to clear your head!
Hi Hope / Jo - Oh and cold and DV!! Not much fun at all. I hope you are feeling better very soon and get some clear days before chemo!
Hi FairyQueen and Tors/Vickie
Hi Tina - Hope Disney is FAB!! You are there as I type.
Im ok - thought I was not worrying too much about the results on Monday but had some very strange dreams that shows I am a bit worried!!! The medics were handing me post it notes with the results on but the writing was too small and I could not read it so they handed me another one and it was the same. This kept on…and on…and onnnnnnnn!! Weird!!
Anyway - hope you all have a good weekend. Ive got a ‘taxi service’ weekend ahead - kids to rugby, kids to party, collect kids from party, kids to netball, pick up from netball… etc etc! Good job im feeling OK! OH away for weekend again!!
Sorry to butt in on this thread, I am not TN but I do have secs in bones and liver. Having read Laura’s post re conversation about return to work I feel compelled to comment.
The comments made by the BCN were so patronising. It is not her place to tell you how to lead your life. I was diagnosed 3 years ago with secondaries, and I am working full time. I can do my job to the same standard as pre diagnosis as my brain works just fine. In my view health professionals need to understand the difference between ‘will die’ and ‘dieing’.
I was written off by a couple of people and it is a horrible feeling. If you want to have a crack at going back to work then do so.
Hi all just got back thanks for your kind words I’m ok now loved my time away with my son hate thinking about the future so won’t I know we all feel the same Tina hope Disney is great big hugs Laura x
Sadie - the 68 is not my age - although it sure feels like it these days! - simply my birth year!! I’m 43!
Sad news round where I live - about 3 miles from where the 4 miners were trapped and died. I had no idea about mines like that existed - it was like something out of the Victorian era from the TV pictures. As usual, safety measures will only be improved when people tragically die. Reminds me of the awful incidents in the 80s when people died in football stadium accidents, then safety was hurriedly improved.
HEllo ladies
hope everyone is doing ok + having a good weekend
just a quick post to check in + say I’m thinking of you all (as always) + hoping things are as well as can be. Thanks for all the lovely well-wishes for our disney break you guys are lovely! We are having a fab time + looking forward to our 2nd day at disney tmoro…
Fingers are crossed for u sadie for monday xx
will post properly Monda. Nite wen bak in the uk, to catch up with everyone.
Love to all xxx
Op went well he removed the interpectoral lymph nodes and was meant to be 1 auxiliary lymph node but ended taking 10 as one was enlarged and took all the surrounding ones but they weren’t the same ones that showed on the MRI so not sure what’s going on there. Ended up getting a drain but had it removed yesterday. As I suspected I had dreadful post op nausea and vomitting but feeling much better this evening and should be getting home tomorrow.
Path results not till 28th (dress rehearsal day for the fashionshow too) and should know a definite plan by then.
Great to hear from Tina in Disneyland, and Lulu in Hospital Land, hope all goes well for you both, though I know who is having more fun!
Good to know it’s done, Lulu, and drain out. One step at a time.
Lavender
