Hello Carolyn. I will look now how to join the private family and probably post a photo
xxxxx. My real name is Eugenia Sophie Giedre but I thought I had to use a screename so I chose Giedre.
I feel a lot better than I did thank you Carolyn, well I should get my CT results back tomorrow......watch this space! I did ring my bcn thus morning to check they have finally been reported and she said they had so expecting a call tomorrow once my onc has read them.
Hugs Janette xxxx
Hiya Jeanette ..how are you feeling today ..did you manage to sleep off your tiredness and sickness.
I suppose we have to expect good and bad days .
Oops just about to go online shopping ..could be expensive
Dear Redridinghood. The moderators let me in to private message ladies on this site. I messaged you last night. Did I do it right and did you get my message?
Please let me know if you got my message.
Do you know The Royal Saracens pub in Beaconsfield? That is where our son Simon lived and wworked and we had a lovely dinner and drinks there when we visited. We also caught the bus from Beaconsfield to a shopping centre, I think it was called Watford? Or something like that. So if you were nearby, maybe we were shopping in the same shop but did not know each other, but now we do.
I agree, scratch. This is a good basic thread........for 'boneys'. The private threads are good for interesting extras, as Carolyn said. So many new things there. And I think registering for the private means you can send private messages to individuals although I haven't done that. But this has been my basic thread since dx, with cutaneous thread for 'skinnies' because of my skin patch, and has been so useful and supportive. I think this is the busiest thread. It feels pretty private here really. I certainly didn't know it existed pre-dx.
Yes, I know Beaconsfield very well! Gerrards Cross is about 2 miles away & in fact I live in Chalfont St Peter, near GX. Strange that you know Beaconsfield! It must be fate!
Your Lithuanian background is very interesting and you are right to keep a Lithuanian passport. It seals your heritage. I haven't been there myself, but a friend has, sailing round the Baltic. A beautiful place. I find as I get older that my family background has become much more important to me and I intend to write about it for my little grandaughter. She will want to look into the telescope of time when she is older and learn about the people she descends from. I feel an urgency now, with my dx, of course. She is only 4 so I can't just talk to her about my parents, grandparents, and further back. So I'll write.
Herceptin? At my sec dx my biopsy showed me HER2+ve, and my onc was definite about me going onto docetaxel so I could have herceptin and perjeta. You must have docetaxel, then stay on the other 2 for life. Anyway, I was braced for this, and fully prepared, but at the next apointment he had changed his mind. I do look fine, and feel fine, and I think he may have discussed me........must discuss all patients with colleagues.......and another consultant advised letting it wait. It took the wind out of my sails! I was fully prepared. But then my small chest skin patch appeared, and another biopsy last Nov showed as HER2-ve, so herceptin forgotton now. But.......he said I would be retested along the line because of a history of HER2. This cancer is so unpredictable. Some ladies here have said we should ask for a check on things like HER2 every now an dthen because it can change either way.
You are very fortunate to have organs clear. I know from here that people can control organ involvement, but it is nice to be clear of that worry. And stable bones is good too. At the start I wanted my bone mets to disappear, but now I am happy with stable. I had my monthly denosumab today and apparently it is a bit anti cancer as well as strengthening bone. Do you have denosumab?
TMs? Reading other's posts here there seem to be 2 camps about them. My onc just doesn't use them at all, but I know that many do. Among those there are camps too! Some just raise an eyebrow at them, while others, like your onc, make decisions because of them. But really just changing your hormone treatment isn't really very extreme.......exemestane is very similar to letrozole, and other aromatase inhibitors. You may come full circle! But I think I will raise the issue of TMs with my onc in July, just to air the subject. They need to know that we notice what they are doing! But this sec cancer is very difficult to judge, and I know there are opinions among oncs about lots of things. But if you are feeling well, and stable, it's going very well!
Worrying about future spread is central to this diagnosis. But you aren't alone! In many ways it is the hardest part, going from having a long life stretching away in front.....my dear parents were 97 and 98 when they passed away.........to trying hard to value every moment. The 'now' is very important.
Geidre, you have travelled to many cities in England! And your son is a global traveller! When my son started his job in Birmingham I had to look in my atlas! i know the south much better, and Yorkshire where my father grew up. And I know Ireland quite well......my mother came from Galway.......a little farm halfway up a mountain! And yes, a coffee to meet 'real' would be very nice! You need a secondary group in Canberra. But keep coming here. You will find good ladies here who understand and share.
There was advice from a BCC moderator today for getting into the private areas.........from Lizzy. Did you see it? much clearer than my explanation!
Well, I am rambling on! Sorry. i just write what I think! Hope the weather is good in Canberra.
Best wishes to everyone on the thread tonight. Hope all scans etc are going well. I hate scans, or at least waiting for the results.