Nip 2!!! Hello all,
sorry i had’nt posted, well as you are all so intrigued the new nip is fab!!!
i was awake having it done but they would’nt let me see as he knows how fussy i am and i did’nt need any local as that area is numb. it took about an hour to do and then it was covered in jelonet, sponge then a bioclusive dressing so i really could’nt see what it looked like until yesterday. it had oozed a fair bit tho and looked quite manky by the time i went for my appointment. i was petrified when he took the dressing off as i thought it would come off with it. really pleased tho as it looks so real, well it is real as made from my own skin, oh and he said whilst doing it that i have very thick skin, all those years of abuse you see! so he did’nt think it would protude enough but any more and i’d look constantly cold!! now all i gotta do is wait for the tattooing which will take 6 weeks, i just hope that bit goes ok. my friend said that if she did’nt know what i’d had done she would’nt have guessed i’d ever had a mastectomy! i’ll show you all on the 13th! have to wear the sponge tho for 6 weeks so it doesnt get squashed in my bra. i left the port in too (was gonna remove it the same day) as i thought it was best to wait and see if genetics come back then have the other side removed too and match them up before taking the port out.
Fed up at home, should have walked last year when i was going to, tell all when see you! again he never asked how i am when picking me up from the hospital.
New nephew was born on friday too so shares his birthday with my nipple!!! Finlay, hes so cute. Cried when i saw picture of him as feeling sorry for myself again about not having anymore of my own (not that i really want them, just that i cant!)
Enough about me, Hows you lot??? Moira and Kate, hope you have had results??!
Debs, see you on the train, swap some seat tickets around or something!!
Lynn, are you coming to southampton?
Sam, your just getting older!!! i have a clicky neck at the mo too, telling RH its bone mets!!! Joking of course, just see if he pays me any attention, did he??..NO!
Trace, hope your still walking! i’m off for another hike tonight! just so i dont have to sit with RH!
Off to see Alexander o Neil tomorrow night, bought RH tickets for birthday and he’s turned his nose up so may be taking a friend instead!!
Cant wait to see you all on the 13th, are we all meeting at station? think mine and debs train gets in at 1145am, so just in time for opening hours!! hope theres a pub nearby kate!!!
See you all soon, love to you all,
Claire xxxx
going round in circles Hi - Well I’m now really confused!! Saw chief onc today who hadn’t got reported result from CT scan but looked at the pictures - I didn’t really want to look - but kept sneaking glances - who thought really there wasn’t much change from September so not as good as january but not much worse either so thought that was OK really!! Strange how your perception of the world changes!! He wanted to know why I’d stopped herceptin as he thought I should stay on it as my heart function is 55-60% and last august it was 65% so he thought I should continue. Had to have loading dose again so had loads of IV fluid!! Then went shopping for party food for saturday for the swim party.
Now have 7 tablets of capecetabine (1750mg so 5 x 150mg and 2 x 500mg) down from 2500mg which was 5 tablets of 500mg. Seems odd to take a lower dose but more tablets!!
My hospital is not taking part in the Tykerb trial and he doesn’t think it is as wonderful as other people are saying. Been back to GP and have got to get permission from onc for referral to Marsden or PCT won’t let it through so feel I’m going round in circles!!! I will try the 3rd onc next visit as he had said he would refer me elsewhere!!
Has anybody heard from Moira?
otherwise - can’t remember what anybody else said in this thread and computer playing up so daren’t try copying etc so hope all well and that nip of yours, Claire and the sponge sounds very intriguing!!!
Looking forward to meeting up
Kate x
I’ve only taken 2 doses of the xeloda and already my feet feel hot. Taking Vitamin B and alphalipoeic acid so see what happens next. Meant to be going out to a fish restaurant tonight-I really don’t fancy fish so hope they do something either vegetarian or seafood pasta as I feel I could eat that.
Wonder if my vet can get me that udder cream Moira told us about - they will probably think I’ve totally lost the plot and section me or something!!!
Enjoy your weekend
Kate
Hello Kate
I’ll keep you company, sorry to hear your feet are still playing up, not very comfortable in this weather so perhaps time to speak to vet and if you get sectioned we will sort out an escape plot. Back on herceptin, hopefully next scans will have better results.
Well I have been busy, Oxford friday for treatment and for a change the herceptin arrived before me and vein first attempt, so only there for 2.5hours + 2 hours travelling, Saturday was busy, son played football and they beat this team who thought they were the dogs b******s, I couldn’t beleive it (we are talking 7 and 8 year olds) after the final whistle 2 of their players threw themselves to the ground and had almightly tantrums and the whole team had to be told to shake our lads hands then the manager wanted to see our teams photo ID cards to make sure we hadn’t put in any ringers. What a result, my hands were stinging from all the clapping and we were all sporting great big grins. Then back into Oxford as daughter had an audition for local stage production, so eventually got home yesterday 5.00pm after an 8.45am start. Went out last night and had a lovely meal, had a bit of a talk with OKH, told him I am fed up with lack of interest in my treament and health, his reply was that he was keeping it normal for the kids, I told him he has made this a lonely time for me and yes I keep it normal as possible for the kids but things aren’t normal and will never be again. Lets see if it gets batter or if he just bury’s his head again in a big sand pit.
Have my train tickets through for the 13th, Claire I will text you nearer the time,
Trace hope you are having fun on your travelling adventures and Hello Lynn, Sam and Moira, where are you all?
I have next Onc appt next week and then the much awaited plastic surgeon appt the week after.
Love to all, I now need to go to the much beloved Tesco to do my shopping,
Debs
XXXXXXX
Hello… Still here dont worry!!!
Have been feeling a bit down so havent been posting but feeling better now, told H I wanted a divorce in a big row in the middle of peckham and stropped off, now h says there is a bad lay line there… just to the back of macdondalds, made me laugh!!
Also increasingly worried about Moira, so havent felt like moaning about my trivial stuff till I find out what the deal is- how you doin’, let us know when you can my love xxxxxxxxxxxxxxxx
have been meeting friends in parks with picnics, all very lovely but end up chasing little h all around who thinks it is a huge game, my god must have gone 5 miles today!
Debs I increasingly feel lucky to be a triple neg as dont have any more treatment, I know some feel like it means that we are higher risk but its all a roll of the dice as far as I’m concerned, so feel for you with your ongoing herceptin stuff… do you have a date for recon yet??
hope eveyone has had a good weekend
xxsam
Hi
Like Sam said I’m really concerned about the lack of news from Moira. I’ve just looked back and can’t see she’s posted at all since the 12th April so that has just heightened my anxiety.
My feet are a problem but some of that is due to blisters on the top of my feet where my sandals rubbed when I was shopping for the twins birthday. I’ve also got badly infected toe nails again so waiting for the chiropodist to call. iIcan only hobble at present!!!
The twins’ swimming party went well until the last 10 minutes when we were in danger of a food fight breaking out and then the leisure staff were trying to push out all really quickly and it got a bit hectic. Anyway, they’ve opened their pressies from that and counted their money so now they can spend some of it. Some of it, they really owe me cos I bought 2 Nintendo DS lites and a game plus other bits so they had soemething to open on the actual day!! Now feel mean to say that but money is a bit of a prob at the mo.
Have to say, the herceptin has made my nose run again but apart from that I have no probs with continuing.
Hope all the rest of you are Ok and Moira I hope you feel able to contact one of us. We are all so worried about you and if we can help in anyway, please contact one of us - you know anyone of us will come tover o help you in anyway we can.
Katex
hey hey sorry been back home alot and working…any word from moira?? Anyone?? and babes if you’re reading but not posting thinking bout you loads!
…and i have bad news my cousin Gary passed away at 3pm today…i was at my moms and of course everyone was trying to track me down so they could break it to me gently and stuff. He hadnt eaten for three days and was so poorly at home last night they had to call an ambulance and he just got worse i cant believe how quickly it has all happened the lad was 27…im so numb and everyone is proper freaking out my mom is close to a breakdown and she was trying so hard not to cry in front of me today and everyone is back to crying when im out of the room i feel like a freak…so i drove back to london…i just cant deal with it all…and ive decided not to go the funeral as i cant deal with that at all i think if i went …well just dont think im strong enough to go.
anyway sorry if i brought anyone down…im coming to southhampton on the 13th not sorted owt out yet i will though.
Anyway BIG love to you all off to bed im abso knackered! xxxxx
Bloody h*ll Lynne
Hope you are alright hun- you are always welcome in sarf london if you need a shoulder or to tickle a one year old.
Thinking of you loads and your family and cousin, xxxxxxxxxxxxxxxxxxxxxxxxxxx
love sam
Message re Moira and Moira’s friend Lynn - I’m so sorry about your cousin. It sounds so hard on you and that your family are acting the way they are. You know you are welcome to phone/visit any of us at any time. thinking of you.
Moira is in hospital at present so let’s hope she gets out soon and she can see how many messages of suppost and love and affection she has been sent.
I know her friend has sent an email to the moderator on Moira’s behalf to post but because of the legal aspects of confidentiality, they are unable to post it without Moira’s permission. I have tried but that is the legal position. So if Moira’s friend is looking at this post perhaps she can find a way of contacting one of us (I hope that our numbers might be stored on her mobile phone and she has got access to it) so that we know what the message is and please send her all our love and support.
My feet are improving and the chiropodist is coming on wednesday to sort out my toenails!!!
Not going to work this week as feel my feet and the rest of me need the rest!!!
Hope to hear from you soon
Kate
Hello GG,
Have spoken with Moira, and I have e.mailed to you all, if not call me. I will text Trace as I know she is travelling, Kate have also left message on your voicemail.
Lynn so sorry to hear about your cousin, do what you feel is right for you, I am sure he will understand.
Love to you all
Debs
XXXXXX
any news? hi girls,
just a quickie,
lynne, sorry about your cousin, as debs said do what you feel is right and i’m sure everybgody will understand, i’m here if you need to bend someones ear, xx
any news on Moira today? private message with update if anyone knows.
Just had my hair dyed!!! first time in nearly a year ooooooo! also been for leg wax too as hair absolutly manic!
speak soon ladies
Claire
xxxxxx
message from Moira hi I’ve spoken to Moira and will send you an email.
She’s still in hospital but sounded better than when I last spoke to her.
No new news here - but can;t get the kids off the nintendo DS lites to write their thank yous!!! Any ideas about bribery etc that I could use then!!
Having our photos done on monday so will get hair done on that day!! Speak soon
kate
hey
Just spoke the lovely ozzie lady herself- shes now on look out for fit nurses for me so that should keep her busy 
I really want to pop up and see her do you think she’d mind?
Hope everyone is as well as well as we can be my lungs are still abit strange but it can wait until i see onclogist at end of may- i think im just being para and have touch of hayfever.
xxx
Hey Lynn
Good to see you posting, have been thinking of you too, hope you are managing and your family are still not over sensitve? I think I can understand the way they are acting, I know it’s not the same but I lost an old school friend recently and when I went to her funeral (and hospice) I could feel the stares and the looks of pity.
Glad you got to talk to Moira. Did she have any idea how long her stay will be, if you read my e.mail then I still intend going into my local town to try and track down male porno mag. I am brave enough to ask my local newsagent but OKH thinks they don’t stock that sort of thing (is that some sort of hidden alert?)
Trace wants to visit Moira on Monday on her way home so you may be best texting her as she is not on-line at the mo.
Sammy and Kate got your e.mails, Claire got your text, will reply.
Love as always to all the GG
Debs
XXXXXXXX
and due to discussion with Trace, OKH has now been given all of your contact details (in the hope they will never be needed)
sorry kate Meant to reply more in detail to you,
Hope the photo session goes well, we all really enjoyed it, even OKH and son. Loads of fantastic photos, the problem is choosing just a few.
Did you manage to get a respone from the foundation??
As for blackmailing kids, I usually just hide the DS Lites until they have done their job, the trick is getting hold of them before the kids hide them.
Speak soon
Debs
XXXXX
Message for Moira Hello Ladies
Please forgive me for crashing your thread. I was very worried about Moira because we often email each other and i haven’t heard from her for a bit. I have just caught up on your thread and found out that she is in hospital. If anyone is talking to her can you please let her know that i am thinking of her and wishing her well. Moira has been a great source of strength and inspiration and support for me as i go through this breast cancer journey. All of you ladies are amazing and despite the cancer are living with such strength and courage and never lose your sense of humour You guys totally rock!!
Kate, I often think of you and wonder how you are doing.
Debs, I am so sorry about your cousin.
Please give my best to Moira if you are talking or texting her and i have sent her an email which will be waiting for her when she gets home
Again, i apologise for being a thread crasher
Wishing you all the best
love
karen from Canada
Moiras friend Hi everyone,
I’m Moiras friend Nic. I’ve been at the hospital with her for the last few weeks - I generally go every night. If you want me to pass on any messages or you want to ask me anything then just give me a shout. I don’t know how this works and whether you can see my private email address but I’m sure you can fill me in.
Thanks
Nic
for nic hi nic
moira told me you were going to post so glad to meet you.
Sam and i are going tomorrow to see the wonderful woman herself. I’ve sent a card to her which has my tel no on it. Wondered if you could find it and give me a ring. It’s a marks and sparks card which is pink and has a kitten on it.
please tell moira that we are def coming tomorrow. Tracey visited today so we are in the picture but would like to talk to you if possible.
thanks.
the www.bcpals.org.uk site does allow private messages so you could sign on there and pm me as I use the same name. You will have to ask the admin to let you pm me as you usually need to post 20 times first so please use the same user name there and i will also ask admin.
this site does not allow private emails to be shown but i am very happy for you to phone me.
looking forward to speaking to you
Kate
Dear Nic
There is no way Bcc will let us swap details- so when you see moira, does she have any of our details so you can phone one of us? Or ask the nurse as I think tracey left all our numbers with them/ or moira and that way we can contact you
give me a ring anytime- and Kate and I are planning to visit tomorrow (tuesday) so would be great to talk before then
love Sam xx
Girls we email you xxxxxxxx
Evening Ladies,
(or is it morning now)
Firstly apologies, 1st to you Trace, my phone was on silent this morning so did not hear your incoming text until far too late this afternoon. Also had not sent tel sort of on purpose as I knew Kate wanted to chat first.
2nd, sorry sammy, you called me right in the middle of commitee meeting (boys football) and it went on far later than expected, or should have done, men’s stupid flaming ego’s, so when I got home I had every intention of ringing you, but it was gone 10.30pm and I didn’t want to wake you or pickles and OKH said Kate had just called, so I have just finished talking to Kate.
Kate and Sammy hope you get to see Nic tomorrow and Kate is finding out if I’m OK for visit Friday on the way to son’s football in Minehead.
Small update on me, had to see BC nurse on Wednesday, needed bigger prozzy, what with the hotter weather and t-shirts, noticed I was a bit lopsided, was quite gob smacked in the difference it must be a full cup size or 2 infact I weighed them (saddo, freak or effing nutter that I am) and I have gone from 130g to 224g.
Probably nothing compared to claire’s but big for me. and she has 2 nipples now.
But this will make you laugh, I was given a second hand one, as the first was not 2 years old and she thought I would only need for a couple of months (it was clean) apparently the first owner decided to return it as she didn’t like it???!!?! So took it as I was so pleased at the 3 months.
Then Thursday back again to see Onc. had good old poke, discussed only 2 more herceptins and my latest findings on Tamoxifen brands and dry v*****s, and guess what??? she has put me to 6 monthly. I was so pleased I told her that I would have long hair and 2 boobs the next time I see her.
So anyway back to hospital again today for the much awaited plastic surgeon appt, had 1st appt of the day 9.45 finally got to see him well over an hour later. Got prodded all over again and also had to lie on the bed with my legs raised so they could check my tummy muscles (thank god I still do my sit ups, they were impressed) and after much measuring and checking on muscles and the amount of skin needed, its decided the best option is my tummy not back, it will take longer to recover, but he feels it will give the better result. Then my jaw hit the floor when he said he is fully booked until Oct / Nov, I nearly cried but kept it together and explained again how I hate my body, he offered me referal but could not guarentee exact timings or choice of surgeon, I did speak with OKH and we decided to stick as I have seen his work and always heard good things about him. Then he cheered me up, when mearsuring me he asked if I was OK with left boob, explained I had always quite liked them until BC and had no complaints, they weren’t the biggest, but they had always held their shape, he then explained my boob was a text book one, the nipple fell in the exact right place and the droop (yes droop, but not old ladies droop/sag) was exactly the right shape and then he placed my arm across my chest and my nipple fell exactly right into the crease of the elbow. How scientific is that, go on dare you, try it out, are you perfect breasted?? or am I special?? Or was he trying to pacify me??
anyway most go. its very late now, its taken me ages to write this post, so as usual will need to copy as I will probably be timed out.
Kate and Sammy please keep us updated,
Love you all, including Moira, Lynn, Trace and Claire
Debs
XXXXXXX