Hi Ladies,Belinda,Celste,Annes,jacquie caroline, Kay,and all others.

I have read all you’re posts,and i feel although nobody wants a secondary dx,the reality is there are going to be other ladies on this forum that will get that diagnosis.I haven’t had that yet but nobody knows whats around the corner.

All i can say is that, all you’re posts makes me feel that there is some hope and treatment out there.

I would be very upset if i thought it was just primary ladies posting.PLEASE dont stop posting.Lesleyxx

ps I know this sounds sad but this forum is the only place i dont feel lonley.

Lesley - you just summed up how I feel about the loneliness. I too, feel lonely while at work, at home, with friends who don’t have cancer… all the time, because I always feel like the ‘odd one out’ amongst everyone else who is healthy. And I can’t share my worries with them, but on here like you, I don’t feel lonely. And that’s thanks to all of you on here, and your posts, whether uplifting or depressing, sharing your thoughts and being so honest in the process, makes me feel that I am not alone. And I am so grateful for that. Best wishes to all of you.

Hi, to echo what Lesley has just said. Your posts are helpful as i have just been diagnosed with mets in bone and liver following scans after surgery for my primary. Seeing that people are approaching anniversaries is positive for me and though I accept that there is the need for ongoing treatment I am able to see that there is also living.

you have all said it so well- every time I read posts, I wander what our very missed friends would say. But i still come on here most days,particularly whilst I am having chemo,and find all your support and experience incredably important. So, as I approach 40 and being diagnosed 3 years, thank you for continuing to post and lets hope we all continue to for a long time to come.

I already feel very comforted by these posts as 4 of you have mentioned reaching 3 year anniversaries of mets and as I approach my 2nd anniversary this gives me renewed hope!
It’s often a hard,lonely road but helps so much to know you’re not alone. xxx

Good afternoon girls, I am here too!!

Diagnosed with secondaries on 26th October 2009 after initial primary diagnosis on 4th April 2008 - how those dates stick in your mind, don’t they???

Anyway, I read more often than I post so I am going to try and post more too as I am always disappointed if there have been no updates when I look. There won’t be if we don’t all make an effort. It is hard sometimes but… I get a lot more positive vibes from the posts than negative ones. I think we are all realstic about out prognosis but most times we can balance it out.

I have alwasy been a glass half full person than the other way around and I am clinging to the fact that I may be one of the lucky ones and will be the ‘exception’ rather than the rule. The nights are starting to draw out, the birds are singing and I will be dusting off my bike ready for when I finish my chemo.

I have just waved goodbye to my husband and children who are setting off on ‘our’ annual skiing trip WITHOUT ME!!! I was very adamant that they should still go…but I am feeling a bit miffed now! BUT I will make up for it and with any luck will get a chance to ski myself before the year is out - fingers crossed.

So, off to glam myself up for a night out with friends, same Saturday and Sunday I will be fit for nothing but chemo on Monday which is lucky because that is all I have planned!!! AND I have a HUGE box of hand made chocolates with all my favourite centres…sod the waistline!

Have a great weekend girls

Love to all Sue xx

Hi, I too feel disappointed when I come on to the Forums and there are no new postings. It has been very quiet lately and I for one, as do many others I am sure miss Debs postings as she was always there with help and advice even when she was not well herself. There are others too who are sadly missed and I will try to make more of an effort to post as there will be new ladies coming on to the site who will benefit from our postings as I did when first diagnosed with secondaries.
When I think of Debs now I wonder if the ‘little bean’ she was so looking forward to seeing has arrived yet, if anyone knows I would so like to know.
Lesley xx

Hi Everyone
I have just caught up with this post …and I was posting often until these last month or two - I agree with you all that i, too felt so sad at the death of our cyber friends that we went quiet - it is so hard to grieve and come to terms with. But this place was so helpful to me since diagnosis (september 2008) and echo your thoughts that this is probably the only place that we can really find others who understand and not feel so alone and it is dissappointing when its quiet with no new posts…one thing that has also affected me is very poor scan results and new chemo not working - even the onc was very pessimistic … so i am scared and fear that i wont get much further - i know this is very miserable and pessimistic but it has frozen me and I just withdrew. on a good day I think of trying to be positive but then I think i am on a very slippery slope where nothing is going to hold things at bay - lot of growth in liver and masses in stomach are, according to onc definately cancer related - at this rate wont see second year since dx…and i feel like shit - so tired and everything an effort - so as you can see i feel that posts from me cant bring any comfort or hope to anyone right now and this has infuenced me not posting - but wanted to contribute to this post and i hope the sec section gets back its energy…Thanks all , jayne x

I would just like to say I am here too although I do post quite regularly but also really miss Debs, JaneRA, Dippy Kate and others. When the Take a Break thread was going, I kept thinking if only Jane was here, she would have had a field day! Glad to hear you are all thinking of posting more and Jaynemh, please don’t ever feel like you shouldn’t post because you don’t have good news, because we need to be here for you, though good times and bad in equal measures.

I wonder if you talk about this website to friends much, I don’t - I sometimes think I am living a secret double life, because the way we talk on this website is just a world away from the everyday conversations I have with family and friends and this is why it is so important to me. I can let off steam here and then be ‘normal’ in my ‘other’ life.

Sorry, I’m rambling now,

I’ve been trying to take a little break, from all sites not just cancer sites (I spend far too long on my laptop) but I still log on here most evenings to hear how everyone one is. If anyone’s having a bad time please do continue to post (only if you want to of course) but please post as so many here will have wise words and be able to offer support and advice on treatments. Between us we have such a wealth of experience and knowledge.
AnneS I’m now in my 7th year of living with mets and I’m trying to catch up with scottishlass Val…is it 11 or 10 years of living with mets Val? I’ve lost so many friends, those I’ve met and those I knew from here through emails. I’ve tried to go forward and enjoy good periods, stable periods, Summers and Christmasses that those friends will now never see…I’m hopeless at expressing myself but I hope some of this post makes sense. I re-read the Gormless thread a few days ago…it was so funny and yet so sad to read posts from those no longer here. I thought about bringing the thread up again but was unsure if it was the right, appropriate thing to do.
Take Care All…xx

Dear Jayne

I really, really hope your’re wrong about your assessment of your illness. My wife was diagnosed with “multiple” small metastases in both lungs at the beginning of last October. Her scan after three cycles of doxetaxel, herceptin and pertuzumab/placebo on 28 December last year showed no change whatsoever, so we’re holding out hope that “the things in the lungs” are something else altogether.

But of course we were flattened by the initial diagnosis here in Germany (my wife’s 32 and we’ve got a 4 year old daughter), which turned me into a real research demon! (Thank you Google). What encourages me as a husband is the therapies that could come to fruition in the not too distant future. These include nanoparticle chemo (win-win-win, i.e. higher doses, with a longer lasting effect and lower side effects) and stem cell research ( by Merck, at Oxford and in Australia, from what I have seen recently) that could, if it works, zap the cancer altogether.

I agree with you about the site and it is really terrible - I am not ashamed to write that I cried at all the bad news recently. But please pester your onc for everything new or, if it is too much, please try to find someone who can do it for you. I have seen at close second hand how devasting a secondary diagnosis is but I have also seen recent stats that show a 7% improvement on the 5 year survival rate (which in turn are, by definition already outdated).

I hope this isn’t inappropriate for someone who is merely the husband of someone who doesn’t even speak English as her fourth language. But just to sign off - my wife went to an orchestra rehearsal last night for the first time since the diagnosis - concert in mid-March! Bowlocks to you cancer!

OK, maybe not to everyone’s taste, but I’ve “bumped” up the Gormless thread, as I think laughter helps with terror/rage/loss.
Marilyn x

Has made me feel so much better reading this (and the gormless).

Jayne, lovely to see you posting and have sent you a pm. Julie xxx

Hi Belinda, Yes I am still around. For those that don’t know me, I was diagnosed with Bc in 1989 aged 39. In 1999, aged 49, I was diagnosed with bone mets in thorax, ribs, spine and pelvis. I am now 59…(60 on 22nd February) and we are going on holiday soon to celebrate…not just my birthday…but the fact that I was given a 50% chance of surviving 2 years…that was around the year 2000…so there is life in the old dog yet…a bit slower perhaps…I know we have lost some very fine women recently…but there are others who are diddling along and dealing with cancer mets for years…I know a lot of you are having a tough time just now and I am not denying that it can be difficult at times…but just wanted to give a bit of hope that there are people who live with mets for years. Love to all on this thread…I “read” the threads everyday but there are just too many to reply to all of them. PM me anytime you think I am missing! Val

Thanks Belinda and Val, it really helps to hear of people living longer with mets.My 40th always seemed to distant and unattainable and yet now as I approach it the old fear kicks in that I might not make 41!!All I wanted last year was to have a chemo-free year and I achieved that but now want another one!! You get greedier as you feel better but I guess that’s natural.
So glad to see more people posting and it has encouraged me to post more too.
Have a good weekend everyone. I’m starting my bday celebrations tomorrow by going to Bath for the day with a friend and to see a play and then need to get the house sorted for my house party on Monday. Have a good weekend everyone and Happy Valentine’s day on Sunday - don’t think I’ll be getting any cards but quite nice having my birthday the next day which makes it ok!! xx

Hi Ann, Have a lovely weekend and a great birthday on Monday…and I wish you many more birthdays to come. Love Val

Hi all

This site has been my lifeline since diagnosis with primary and then secondaries within a year. Ups and downs please please never stop posting - as many of you have said this site is reality where I can be myself and say exactly what I feel and share tears and laughter.
I’m sure our much missed lost cyber friends would want us to keep on supporting each other and keep up the fight.

Ann have a lovely weekend, Bath and a play sound lovely alays wanted to go there and have a lovely birthday on Monday.

Hi Jayne I do hope things get better for you. I am on my fourth chemo in 18 months which as last seems to be doing some good. I do hope they find one that starts to work for you but please keep posting we are always here.

Lots of love to you all Anne xx

Dear Jayne - I was really pleased to see a post from you as I hadn’t seen anything from you for some time. However I wish it was better news and I feel I understand a little of what you must be feeling. I am probably going to be starting my 4th line chemo sometime in the next few months (have new tumours in the lymph nodes although the liver is stable, so just waiting and seeing what happens). Onc is pretty pessimistic about the chances of it working but it may do - we had a long discussion about how sometimes the tumours will respond to one drug when they progress on another. I can’t remember which chemos you’ve had - taxol I think? and xeloda? - what are they suggesting next? That feeling of being on a slippery slope is very scary - a real sense of being out of control. Please do keep posting though when you feel able - you have given much comfort and support to others in the past so you definitely shouldn’t feel you shouldn’t ask for some now. If it helps you to post and share your situation, then let us help.

Anne - have a fantastic birthday on Monday.

Hope everyone has a good weekend. Kay x

Hi all and many thanks for you support to Linda , Belinda , Julie , Anne, Kay and charlieray - it is this heartfelt support that is so important…yes, Kay it is xeolda that is not working and onc said only option is virlobine(?) but he said dont hold your breath as he was not confident it would work but have just started two months of lapatanib thrown in so if i get a good response they will argue for more …only i am just feeling so awful at the moment i am not confident - to top it all i was struck down last night with the worst bout of diahrea so languishing in bed today!Anyway - have had no energy to buy anything so not very gormless at the moment but will check out the thread and see if it cant persude me to buy something expensive and frivalous …will now check my pm, julie…thank you …Carlieray … think its very appropriate that post …tell us more about these new treatments - i have never heard of them…hope they come quick…and say well done to your wife re concert - sounds a lovely ( and positive) thing to do…Kay - wishing your new chemo works well…and happy birthday Anne - Having poo’ed for england i am going to add fuel to the fire and make myself a sandwich! love jaynex

I think it is always hard coming out the other side of a long dark winter, especially for us on this forum. We have lost so many friends. Many of us are not doing so well with our treatment and it is so cold, dark and miserable that it is hard to see any light ahead. We just need to wade through the last few weeks of Feb and spring will start springing.

I have been steering clear of the site for a while but it is lovely to see some old names posting again. I will try and stay in touch a bit more. I’ve not felt physically great over the winter. My last scan showed aromasin was not working and I went in for a liver biopsy this week, to help decide the next course of action (retesting Her2 status). Quite honestly, I can’t wait to be back on chemo and get some energy levels back. What weird kind of a world am I living in?

Jayne, I’ve not tried vinorelbine yet either, but my onc has said we could also try more cytotoxic chemo, gemcitabine again, carboplatin, taxol again… Have you been on all of these yet? I hope you enjoyed the sandwich…