Hello,
I have not posted on here for a while and just wanted to say hello to everyone on here again.
I am sure there are more new people on here since my last posting, so this message is really to greet them and also to touch base with all the other ladies I have spoken to in the past.
I was diagnosed with sedondaries in june 2007, I had taxotere and an oopherectomy and am now on Letrozole. At the moment all seems stable and I am hoping this will continue for years to come.
I relied on this site a lot during treatment, and know that is a great for help and advice for all of us ladies.
I dont have a lot more to say but would love to hear you.
For a chat or just to say Hi.
Fay :o)
Hi Fay
Its lovely to hear from you again I am still around too. I have just started another course of chemo (letroxole this time) in tablet form.
I am still having trouble with my lungs.
Unfortunately there aren’t so many of us left now posting.
take care
Caroline
Hi Fay and Caroline,
nice to see you posting again Fay and really pleased it is not because you are having problems. I know what you mean about this site I have depended on it more this year than ever before and the support has been brilliant. Sorry to hear you are having lung problems Caroline and hope
you are feeling o.k. in spite of this.
Love Debsxxx
Hellooooo Fayeee and everyone else
Good to hear you are doing so well, although we chat on MSN too. LOL. Hope that we all carry on doing as well for years to come, I am trying my hardest.
Caroline long time no speak. I have not been on Live Chat for a while, as so tired in the evenings and with the school holidays we were out and about keeping the muppets entertained and on our hols too. But Jack has now started preschool 3 mornings a week, so hopefully more time to myself and relax and will try to get back on chat soon. Sorry to hear you are having problems with your lungs and hope they can sort this out soon.
Debs I read your thread all the time to see how you are doing, and hope that you are not too bad today.
I dont really post on here as much as I did. Different things contributing to this, the loss of Sixpen hit me badly last December I have to admit, and then KatherineM too having met her a few times in London. I do read the posts tho to keep up and now I have more free time will try to do so more.
Take care all of you
Lots of love
Dawn
xxx
Hi Fay & Dawn,
Havent seen either you around for a while so it is good to hear from you and to know that you are both doing o.k. albeit busy. I am afraid me & my armchair are becoming a couple almost inseparable! I long for the pain to pass but it is pretty persistent just now. Am provisionally booked in for another spine nerve block on 5th Oct, but because I am on a trial that doesnt officially finish till the 7th there is a bit of a dispute going on! If they are inflexible I guess it will have to wait for the next slot.
Dawn
xx
Hello its me again
I’m really glad fay that you started this thread because its nice to catch up even if things are not going too badly. I just realised I have put the wrong chemo its Xeloda I’m taking not letrozole. Does anyone have any experience of this?
Dawn I don’t go on live chat every week as I keep falling asleep in the evenings (pain killers make me so sleepy) Like you it really knocked me back losing sixpen, dippykate and Katherine M, I sometimes find it hard to post. There are often things I would like to say but I can’t find the right words.
Some people are so good at writing the right things and making very interesting reading.
Dawnhc and Debs I hope that you are not feeling too bad at the moment I have been reading your posts DEbs and really feel for you.
Bye for now
Caroline
Hi Fay (and everyone else)
Really good to see you posting and even better to hear that you are doing ok.
I was on xeloda for nearly a year, Caroline, and it worked well for me - was NED for about 6 months. So hope it works well for you too and you see some improvement with your lungs. I found the biggest problem with it was getting very sore hands and feet - used to get through pots of cream. Apart from that though, it wasn’t too bad at all.
Sorry to hear the pain is no better, Dawnhc - hope you can get the nerve block sorted.
Hope Jack has settled well at preschool, Dawn, and that it does indeed give you a bit more time to relax and enjoy yourself.
As for me, I am just about recovered from the SIRT - still quite tired - and the initial results are “encouraging”. Have been struggling emotionally the last few weeks though. Am off on an Odyssey course the week after next so hoping that that time out will help. I too miss people who have died since I joined the forums - there have been far too many of them in the 2 years I’ve been posting. And far too many people currently unwell.
Still… here’s wishing everyone a good weekend.
Kay x
Hi Fay, Hi Dawn…I’d noticed you both hadn’t been posting as much lately. I think of sixpen often…I’m so annoyed with myself, I accidentally deleted an email from her with a pic of her and her little boy. I belong to a small email group, a few years ago there were so many of us. We used to meet up all over the UK. I’m the last one of my local ‘gang’ too…I lost 3 very good friends living nearby.
Caroline…Xeloda has been a marvellous chemo for me. I’m in remission at the moment and I’ve had no bad days, my bloods bounce back no tiredness etc. Some dry feet but recommend Udderly Smooth for hands and feet. Good Luck…x.x.x
HI all of you. It’s so nice to see your names again and know you are getting on with life. dawn, I can’t believe your son is now in preschool. Mine started year one and looks so grown up. I was diagnosed with primary and secondaries in lungs in april 2007, and can’t believe it’s been so long-we have lost many friends since then, but the friendship and support continue.
Thank you for starting this thread fayjay.
love Nicky
Hi All
India - My daughter has just started Year 1 too, and of course Jack in preschool. Never thought I would see the day to be honest. So next time wanna see Jack start Reception!!! I was dx in July 07 and agree that cant believe it been so long.
Belinda, if you email me, I have a few piccies of Anne with her little boy, so can forward one to you if you like. Not a problem. I still think of Annie most days, and especially my treatment days when she would constantly text me throughout the morning. And I made a few friends during my treatment, but unlike me they were all on Herceptin for 17 sessions, so have been and gone. Does make it harder to bear sometimes knowing that I have to go forever. And well done u, u sound like things are going really well.
Kay, as I have said, am sooo sooo pleased for you that your SIRT treatment went so well. And gives us all hope and something else to ask about when the time may come.
Dawnhc, am so sorry to hear that you are in constant pain, it cannot be easy for you. I am hoping one day to come to yours again for a meet, but 13th Oct is out for me, as I dont like moving my treatment days - some may find strange, but I have also booked my next years summer holiday around my dates as they stand too - I know may be tempting fate, but hey, gives me something else to aim for, and have no intentions of going anywhere soon. So fingers crossed
Anyway, my bed is calling, so will say good night.
Take care all, and agree with the others Fay, great thread to start. Hope to catch up wiv you on MSN over the weekend.
Lots of love
Dawn
xxx
Geee thanks for your lovely posts,
It is really nice to hear from you all again.
I too was hit hard losing sixpin (annie) and dippykate (kate), and others that I met through this site. I guess that was one of the reasons I stopped coming on here for a a while.
Annie (sixpen) has been on my mind a lot lately and even in one of my dreams. Maybe that is why I have posted this. If it had not been for this site I would not have met her or dawn (dm1968)and others that have helped me along my journey.
It is hard but we have to carry on and I know that all the ladies that we have lost will want us to keep up the fight, even though we know is tough at times.
Even I have not been on here I have not forgotten all of you which is one of the reasons I decided to do this post. To catch up with all the ladies I chatted to before and also for all the newly diagnosed ladies, to know that life does not end as soon as you have a secondary diagnosis (like I thought it was when I was diagnosed with secondaries).
I know that during my treatment I could not have coped without this site and the support of dawn (dm1968) and annie (sixpen) and all the other ladies that have offered me help and advice along the way especially when I was at my lowest.
carolinew - Sorry to hear about your breathing problems , I too have secondaries in my lungs. I was pretty bad when diagnosed, I had taxotere and that worked a treat. (dont know if you have tried that one yet)
I have heard that Xeloda is good and I really hope that it works for you. But someone once told me that “we have many more lovely chemo’s to try” (Grreat lol), and they are making advances all the time. We just want them NOW!!! I too am like you and can not put things in to words like other people. I was not going to write any of this but thought “sod it” and did it anyway. I am glad I did.
Belinda - I have a piccie of annie on her wedding day that I kept on my computer, I am happy to email it to you if you pm me your email address.
Kay123- We are all here for you to help on the emotional roller coaster that we are all on, I have had some major downs (as I am sure we all have) but have come back out of them, so am happy to talk anytime.
Dawnhc - I hope they get the pain under control for you, I know it makes you miserable when you are in so much pain I hope the nerve block comes quickly and helps. Do you have pamidronate? I do and I find it helps.
debsincornwall - Thanks, it is nice to be posting again :o)
india1 - it is nice to see you again too, as it is with all you ladies
dm1968 Dawneeeeeeeee, I will catch you on msn over the weekend…lol…
I am going to go now but am going to try and come on more often for a chat with you all.
Thanks for reading and please keep up the thread, maybe we could arrange a meet somewhere in the UK it would be nice to put faces to names. x x
Phew that was a long one…lol
Hi Dawn and Fay…thanks…I’m now dashing out but I will PM you both this evening. I never met Annie but we had an email friendship.xx
Hello Fay and everybody else.
I am one of the new girls here. I was diagnosed with secondary in my bones in July this year. Have already found a great deal of comfort from just reading posts on this site. I still find the whole communicating on the web thing a bit itimidating especially as you have all gone through so much and some very bad times but am realising that everyody here is very welcoming and helpful to people like me who are just starting out on coming to terms with what has happened to them. I still get very anxious but try not to dwell as it just makes me worse.
I would like to say thank you especially to Belinda you have given me some very helpful information via this site and made me feel so much better already. I think you and I have a similar condition.
I am hoping that in turn I will be able to offer whatever support I can to new and old although at the moment I think I will receive more support than I can give. I still feel like I know nothing about cancer but I am learning.
Anyway Regards to all
Julie X
Oh thanks for the kind words Julie…yes reading your profile we have a lot in common…my birthday is Feb 1959 so close there too!
Private message me anytime if you think I can help in any way.
Belinda…x
Hi Faye,
Really good to see you posting here, but I also love to see us taking a break from the forum - usually means things are going well - can only be good news! Here’s to the Good Life!
Jenny
x
Hi Everyone - so good to have a quick thread to catch up with peoples news - I haven’t been posting much recently - mixture of things really - bit of depression , scan results not great , sad by the losses on this forum and …feel like i am dancing just to keep up with work, family etc - think i am turning into reclusive! Anyway - heartened and delighted to hear the good news and saddened to hear the not so good news - will try to get back into it and post more…meanwhile , love to all ,jaynex