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Original poster

23rd **TAMOXIFEN** thread

999 replies

MaryAnnSingleton · 01/05/2012 15:20

oh my !

OP posts:
Original poster
MaryAnnSingleton · 08/05/2012 13:10

how lovely that you've met !! awww

OP posts:
Sometimesiwonder · 08/05/2012 13:29

Oh a meet up! How nice! I don't think we have had many of those. aaahhhhh....

MAS - I know you find these things a struggle. Don't blame you, actually, I think I would be v nervous to see someone I went to primary school with, before i got wrinkly and baggy. Sorry, I know that doesn't help. But a trip on the train will be exciting, too.

Bournemouth was sunny and warm(ish) on Sunday. I am not joking, it was lovely. Crabbing at Mudeford was a bit cold on Saturday, on the other hand. And we did not catch any crabs at all Angry

When dh went off for a wee dd and I begged a couple from someone so we could pretend we'd had a run of good luck. He wasn't fooled Hmm

graciesmall09 · 08/05/2012 13:59

Did I tell you all I met the very witty and beautiful Topsy this morning for coffee? I actually think she was quite disappointed that I wasn't some mad hairy trucker with bad hair Grin

No word from gigs yet? Hope you are ok.

sometimes glad you had a good weekend. Good call bribing some passers by for crabs

Managed to talk DH into doing the school run so I can iron mumsnet.

Ned Hope you are on the mend and released soon.

Gigondas · 08/05/2012 14:01

Am lolling at home after rads and pre onc visit. My mum is here caring for me which has helped.

Am defo going to ask about sleep aids/ anti ds. I can take a bad dx but what I can't cope with is feeling like don't know who/what I am and hopeless as can't sleep/focus. I could cope with living day by day but don't even feel can do that .

Gigondas · 08/05/2012 14:03

Nice that gracie and topsy met up.

mas do any techniques (meditation etc) help when you start to feel like this? Can't be easy as I know that being busy the last little while has been unsettling.

Waves and love to everyone else

graciesmall09 · 08/05/2012 14:15

gigs glad you are relaxing. I was speaking to my nurse this morning as she was asking how I was sleeping (not good) but she said the newer sleeping tabs are great and non-addictive. I can't remember the name of them though so not a lot of use (sorry) but I will try to remember what they are called. I am on Amitriptalen (sp) for nerve pain and they are an old fashioned anti-d which helps you sleep but I take it at very low doses but they originally helped me sleep. good luck today.

Sometimesiwonder · 08/05/2012 14:17

Gracie - Grin

Gig - glad your Mum is there with you. Positive vibes beaming to you from me this afternoon.

I can't find what happened to Ned - keep scanning back, must be blind - but I hope you are on the mend, lovely.

smee · 08/05/2012 14:18

Gracie and Topsy - do you mean you aren't just virtual?! Shock

Gig, get the meditation CD MAS recommends. Jon Kabat-Zinn : Guided Mindfulness Meditation. Got to be worth a try. I am new to all things mediative, but when I was in the mire of paranoia a few weeks ago, it really did help me switch off a bit and relax. Hope Onc appointment gives you a few more answers to questions at least.

MAS, I doubt this'll help, but I get horribly wound up about meeting people - especially if we haven't met for a while. Am a complete wuss about any big or new social event though, even though I like the thought of them. Does that sound similar?? Can offer no solution, just solidarity.

Sometimes, my DH wouldn't have fallen for that either. You make Bournemouth sound almost enticing..

No news from Ned yet? Poor thing, hope she's not stuck in hospital for long.

Drain, down to 50ml, yay! They need it to be below 30ml, boo.. Still, I cycled to hospital and back, so am feeling daftly impressed by myself, though clearly insane Grin

Gigondas · 08/05/2012 14:21

smee less is more if you want that drain to go down so take it easy . Cycling to hospital Wink

Yes- I have that cd and will dig it out . Have sleep type one which is sort of
Helpful.

smee · 08/05/2012 14:41

What time's your Onc appt? Is it soon?

l4k · 08/05/2012 14:49

it's results day for mil tomorrow.I can't say I'm feeling too positive.Dh is coming too,appointment at 10 am.
I will let you know as soon as I get the chance,when she's not looking!!!
Mil has been really good and kept herself busy but I know she is getting nervousSad

Sometimesiwonder · 08/05/2012 15:08

Everything crossed for her, 14K. Sad

Smee - Gig's right. if you get everything pumping the output will go up Shock

Oh yes, Bournemouth is really lovely. Not our usual sort of holiday destination but it has a really laid back vibe, beautiful sand and fab shops. Plus I like old fashioned piers and big '30s hotels with sea views. makes me feel all nostalgic! Smile

smee · 08/05/2012 15:26

I know am own worst enemy, but it's less effort to cycle in lots of ways. No direct bus, so it's a walk or a cycle really and as it's on the flat, bike power's easier than walking I promise.

L4k, will be a tough day am sure, but better to know what's next. Waiting's so horrible. Will be thinking of you. x

Original poster
MaryAnnSingleton · 08/05/2012 15:28

glad you had a lovely time sometimes Grin @ borrowed crabs ! Ned had a nasty infection so was admitted..no word yet.
Thinking of you now gig and sending love.
smee yes, that does sound familiar- I last saw them in October (just the school pals) and we had a fab time -it was here at my house- they are great - but I get nervy about anything nice as well as not so nice- I know that no matter how ok I probably look I will feel that I look wrong and that will make me feel bad-gah ! Very stupid. I love the idea of it all but... the train might help Smile I just overthink things.
Hope you continue to drain nicely smee - are you meant to be cycling ?
14k lots of good thoughts to MIL for tomorrow x

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1stepatatime · 08/05/2012 16:50

14k - sending positive vibes your way for your mil's appt tomorrow.

Hope gig and ned are doing ok.

Mas - I think sometimes it's harder to force ourselves to do the nice things because it's a choice, whereas we put ourselves through the bad stuff because we have to! If you think you'll be OK once you're there, then I say go for it and I'm sure you'll look absolutely fine. Friends will just be pleased to see you, they won't be analysing how you look :)

Smee - I'm beginning to think you're some kind of wonder woman. I was driven to the hospital 5 days post op to have drain removed and even that left me shattered!

Trying to gear myself up for results appt on Thursday - have made a list of questions, otherwise I'll probably just go blank when I get in there!

smee · 08/05/2012 16:57

1step, me Wonder Woman?! Nope, still in sloppy cords and tea stained t-shirt. Grin

How's the list going? Do you want to ask us anything? You'll feel better once you're through the appt though am sure.

Gigondas · 08/05/2012 17:06

Ok - sitting waiting for blood test as basically told onc how low I felt. Also got some sleeping tabs, referral to specialist psychologist and plan on next scans (two more MRI ). They aren't actually sure how quick it's moving so aren't planning

Doxorubicin is what might be offered or that plus another which would be inpatient .

Dh and onc discussing what pros/cons etc are but basically won't decide on anything til finish rads and do a further ct scan.

Mad question here that probably explains a lot but have sleeping tablets so that probably means am safe to go to sleep and still wake up ...Wink

14k my big question for your mil is pastoral support -given how patchy It is on here and how much of going thru this is emotional and practical I would want mil to be sure on where she could ask for help.

Gigondas · 08/05/2012 17:07

Sorry planning chemo type quite yet .

1stepatatime · 08/05/2012 17:12

Aww smee, don't spoil the illusion! Actually, feel better knowing i'm not the only one with a tea stained top Grin

In terms of questions, am I likely to be told what difference chemo will make to my chance of recurrence or does it tend not to be that detailed? Also, when is chemo likely to start? I'm still in a fair bit of pain around wound and especially under my arm and would like that to feel a bit better before I start next phase. Do they usually give you all the info re stage, grade, etc or do you have to ask for it?

1stepatatime · 08/05/2012 17:18

Gig - glad you've got through your appointment. Hope sleeping tablets help and that you're referral goes through quickly so you can get the support you need xx

1stepatatime · 08/05/2012 17:20

Should have said "your" referral!

Original poster
MaryAnnSingleton · 08/05/2012 17:25

glad you have referral to psych. gig and the sleeping tablets- getting sleep should help you feel more able to cope.
Will be thinking of you too 1step xx

OP posts:
smee · 08/05/2012 17:54

Gig, good that you've got a referral and that DH is doing the forensic questioning for you. Hope the pills work tonight. Sleep will help a fair bit am sure. Sounds like your Consultant's being incredibly thorough.

1step, chemo I'd say will be soon - I started 3 weeks after my op. They'll tell you what drugs they'll be giving you and should give you leaflets on possible side effects too. They should also give you a pathology report. You can refuse if you'd rather not have it. They should tell you grade/ stage too. I think they tend to take their lead from you. So in a way it's up to you, but if you want to know it all, they should tell you it all iyswim. They'll have a stat on chemo effectiveness, but you'll probably have to ask for it. Mine was that chemo reduced chance of recurrence by 15%, which felt v. worth taking, though I was surprised it was that low. My Rads/ Tamoxifen gave me much longer odds.

KurriKurri · 08/05/2012 18:00

gig - I'm pleased you've got a psychologist referral, and the sleeping tablets will help you get back on more of an even keelSmile

1step - they will tell you all of that information, if you want to know. Remember it's up to you what information you have or don't have given to you at any time. Everyone is different in how much detail they want to know - for some people it gets a bit 'information overload', for others details are a comfort.

So if they aren't forthcoming ask them, and if you don't want to know something tell them that too Smile

l4k - good thought for your MIL tomorrow.

1stepatatime · 08/05/2012 18:41

Thanks for the info, I'm a bit of a control freak so like to know exactly what's what, so will be asking lots of questions at my appt.