Hi KindredS
Didn’t want to get your post muddled in the thread, I dont actually go to a support group, although we do try and meet up as much as we can, we come from all over the UK, its a cyber support group, previous support groups that I have attended have been no good for me all a bit to much in your face ( if you know what I mean?!) anyway the good thing about the support group I belong to is that I can switch on an off when I feel like it, the group is not so big, so we know each other quite well, your not obligated to post if you dont want to and most importantly, there is always some one familiar if you have a question or a worry, between us we help each other out as much as poss and some of us have been friends for for 4 years or so. between us we’ve all been through various treatments including RFA and most chemo’s. If it is the sort of thing you are looking for let me know. What days are you at the RM I’m in fulham on a weds- maybe we’ve sat next to each other?! I’m usually the one causing havoc!
Love Amberx
Hi Amber,
Thanks so much for getting back to me. I am usually at the RM in Fulham on a Monday at the moment, every 3 weeks for now. I will look out for you though should I be there on a weds, which I can be sometimes depending what is going on!
I did a telephone support group through BCC for primary BC 3 or so years ago which was helpful - as was actually advised against going to the one at the hospital by the BC nurse at the time, on the grounds I was so much younger than everyone else (only 27 at the time)! That was fine as was not convinced it was my bag anyway - but now I’m in this secondaries place am wondering if linking up with some women in similar situation when needed may be useful, and why I have started using these forums more. I don’t want to gate crash your group if you are all established with it etc, but sounds like it could be the kind of thing I’m after. If it’s possible I could try and tap into it then could you PM me the details - but like I say completely understand if you guys are set up and don’t really need someone else to join in right now. I am finding if I use cyber sensibly, it can be really helpful - without googling stuff like I used to and getting scared like mad.
Hope all is going well with your treatment at the moment.
x K
Hi kendraS
Now the difficult part comes!! I’m hoping to be able to give my addy, it could well get taken away, as i’m not sure of the rules anymore, but here goes anyway!! (edited by moderator) I think the group will be good support for you, you can give it a go anyway, we are mainly on the younger end of the scale. Do you live far from the RM? if this fails I’m back at the hos next weds so I can leave my addy with Zeena or the other receptionist, of if your there before me you can leave yours. Thanks for asking, I’m doing fine on weekly Taxol at the moment, have managed so far to hold on to my hair since proff smith has allowed me to use the private cold caps, feel OK just a bit tired, looking to book a holiday to dubai befor xmas, life is pretty near normal - well as normal as can be with this stamp on me. Winters not my fav time of the year, too many dark days. You where very young at DX - I was 32 (thought I was young!!) anyway it would be nice to catch up via mail - you really aren’t imposing at all, we like to help out as much as poss, we have fun within the group too, you should just be in time for secret santa if you fancy it!!
Look forward to hearing from you
Love Amber xx
Hi Amber and KindredS…Hi Amber the mod has probably already advised you but just in case …you can private message K your email address…x
Doh - moderator removed it! (moderator we do understand…)
It’s ok though we have another plan… I am at the RM Fulham this afternoon actually to see my onc. I will leave my details with Zena on the MDU reception and ask her to give them to you on Weds when you are next in. I will then be back there on Mon next week so should be able to pick up yours - but I will leave my home email / details etc… so feel free to email me whenever you get my details!
Glad the weekly taxol is going ok and that those caps are working for you. Some people don’t think it’s worth it but for me it so was. They worked well for me with both FEC and Taxotere - esp the taxotere time as I wet my hair and did the conditioner thing too. Even the hospital were surprised how much hair I had…one less thing to have to deal with isn’t it?!
I’m about to start a new mix of hormone stuff which I will find out more about this afternoon. Back to those hot flushes for me but hoping it will keep me good none the less.
Thanks so much for letting me know about your group - it really does sound like the kind of thing that could be really helpful for me. I’m nearly 31 now so still very much on the young side to be dealing with all this, but the fact is I am, and so linking up with a few others in a similar situation would be great.
Thanks Amber - have a good week,
x Kindred (will leave real name at reception at RM MDU - still not sure who is reading my posts on here sometimes!)