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38th tamoxifen - waiting for summer in the bus shelter

987 replies

Gigondas · 15/06/2013 12:01

New thread.

OP posts:
BetsyBoop · 15/06/2013 18:31
NedSchneebly · 15/06/2013 18:45

Had lovely day with DBrother in London - trip to London transport museum, potter round covent garden, nice lunch, run for DS in the park. Pizza, beer and The Hobbit on the cards for this evening. Going to RAF museum at Hendon tomorrow Smile

Sending big love and hugs to everyone, especially those not sleeping. It's so draining, I really sympathise.

Wishing everyone a peaceful evening and sleepful night x x x

kitkat1967 · 15/06/2013 19:00

Hi everyone,

well I hit the wall today. Throughout diganosis and all the tests I have been fine - carried on working, no tears etc. but today after DS sports day I was wiped out - lay on the sofa and conked out for about 3 hrs - could speak to no-one (even the cat tried to wake me several times). I've been awake for about 2 hrs now but feel completely groggy.

Sounds like everyone else has been really busy though - I've got chocolate raisins for the trolley but no baking.

It's a long way off for me but can someone advise me whether you can have immediate reconstruction following mx if you still have to have your radiotherapy? And if you don't mind me asking what are the pumps from - why/when do you get them? Blush

topsyturner · 15/06/2013 19:18

Evening All

Girls were just being girls .
Talking non stop without breathing , nothing dramatic Grin

Kitkat if you need rads they generally say no to immediate recon . Mainly because the rads can cause shrinkage around the scar area .
Are you worried about being without boob ? (Perfectly natural if you are)
I still have a falsie , because my cow of a surgeon won't do my recon till I lose my immense stomach .
But it's not that bad !

Ruby if you are feeling sick , please phone your onc team . Anti sickness meds can be juggled . There is no need for you to feel sick .

Aaaargh oven bell is going off , back later x

kitkat1967 · 15/06/2013 19:27

topsy - not so worried about having no boob - more kind of hoping for a '1 hit' surgery and to get everything done. Am seeing surgeon on Tuesday for the first time since we got all the histologies in so will see what he says. It's a long way off anyway as got to do chemo first but as onc says it is likely he can't do much the chance of mx is now higher than it was - so was just curious. Def have to have rads - to start 1 month after surgery.
Sorry you can't have your recon yet - it is the risk of anesthetic? How much does he want you to lose?

smee · 15/06/2013 19:55

Leapt, well ok crawled off sofa and return to find a new thread. Been reading back, so waving a hello to lily, though sorry you're here iykwim.

Sorry you're feeling sick ruby. Bloody chemo. Hmm

Yay for your clear node Betsy that's great news. Hormone status sounds good too. 'Tis true I have had both breasts removed and on the NHS too, but one was at diagnosis, then I talked them into elective mx of non cancer breast a year later. Was quite a job to convince them. Can fill you in on what you need to push/ say it's something you're thinking of. You have to be v clear, driven and unemotional to convince them, which is why it's harder at diagnosis.

kitkat you can have implants immediately even if having rads. That's what I did. Rads can shrink the skin, but they do a temporary implant which they inflate (seriously weird!) once your skin's recovered. Does mean more ops, as they tend to then replace that with silicone down the line. Less of a big op than full reconstruction, but not as good a result as less natural. I just did it to have some shape as wasn't too fussed. Bizarrely now have pert if nipple less breasts of a teen and don't need a bra. Grin

Bit late for cheering farewell to Sydney, but yay and yay again for HND. Astounding that it took that long to get rid..

Earth I do that jumpy thing a lot. Always have had. I thought it was normal. Is it not? or are we both just weird? Confused

Tis is getting a bit epic and still have missed loads I know, but you lot can't half yatter on. Have some blackberry jelly and raspberry ripple ice cream for post op sore throat, which I might share if you ask nicely. I have been promised Wine but DH is proving a bit slow with the opener..

kitkat1967 · 15/06/2013 20:33

thanks for the info SMEE. I'll report back post seeing surgeon - see what he has to say. I would have more options if i had bigger boobs it seems Hmm

trice · 15/06/2013 20:49

I have been for three walks today. Trying to build up some stamina. Perhaps it will help me sleep better.

I do the jumping thing too. Must be one of the many drugs.

Copthallresident · 15/06/2013 20:53

kitkat I can only dash on but a few friends had immediate recon and then radio, with no probs including one who had chemo pre mastectomy . However I do have a friend whose lumpectomy breast turned into a cannonball, ten years ago so may technology may have overcome it. I think you have to be guided by your Consultant.

BetsyBoop · 15/06/2013 21:08

glad to hear you're on the mend smee - when you are feeling fully recoverd from your op I'll pick your brains, as a double mx an option I'd like to explore. With having chemo first it is a while until surgery so it might be possible to convince them I'm sane and rational before hand although DH would no double disagree with that one and do it all in one go.

I hope the sickness is passing Ruby - yuck :(

Glad you finally got your "divorce" HND :)

trice how are you doing?

kitkat I have the opposite problem (humungous boobies - J cup Shock) - I would offer you some of mine but, well, as you know they aren't much cop now. Grin I had a conking out session on the sofa last Wednesday after tea, for over two hours . Even the kids bouncing round me made no difference apparently, it does just suddenly hit us sometimes I guess.

Ooh cinnamon buns malt - I might need to ask for the recipe for those, I love cinnamon :)

Well I've been busy the last couple of days setting up a blog and a "secret" facebook group where I can post updates for friends and family. It's lovely everyone cares so much, but I was getting worn down with repeating the same update over and over...so hopefully this will help.

BetsyBoop · 15/06/2013 21:10

good to see you trice :) we crossed posts, I took that long writing my mammoth post Grin

malteserzz · 15/06/2013 22:55

Night all x
Hope everyone's had as nice an evening as possible. We've watched sky fall on DVD really enjoyed it. No wine tonight had too much last night!
Hugs for those who need them and sleepy vibes Smile

malteserzz · 16/06/2013 07:38

No overnight posts this is good Grin
Fathers day today don't forget
We're off to cadburys world as part of ds birthday celebrations, he ll be 10 next week, I'll bring plenty of chocolate back for the trolley
Hope everyone has a good day

NedSchneebly · 16/06/2013 08:42

Just checking in on the nights events -malt is right, no night posts a positive thing? Hope everyone had a good one x x

Enjoy Cadbury world malt I've been several times and loved it. Must aim to take DS sometime - think it might be right up his street!!

Have a peaceful Sunday everyone, whatever it holds x x x

sandripples · 16/06/2013 08:52

Hi, just saying hello really as I haven't been on for a while. (Welcome to new people. Just to explain, I was Dx in Dec 2009 and had lumpectomy, Chemo and rads in 2010 but now fine as far as I can tell and working full time so not often on here but I like to keep in touch now and again)

Betsy - one thing that helped me re communication of the same thing repeatedly was to choose a couple of trusted friends/colleagues and just update them - they accepted the role of letting other specific groups of friends or colleagues know what was happening with me. It saved the repetition. Early on I also found it helpful to realise I was under no obligation to tell anyone anything - it was up to me. This was partly because my dx was just before Christmas - I decided not to let many know till later as I didn't want to tell people in Xmas cards or before I had discussed it with the family which needed time.

Someone mentioned parsnip cake. I tried a National Trust recipe once for that - very yum!

My weight has got really out of control over the past few months. Disappointing after my efforts in 2011 when I was positively sylph-like! (well, comparatively speaking) I think its partly the weather - have lost the motivation.

Anyway, I had a lovely w/e of sailing and gardening last w/e, and this w/e is quieter but am going for a swim soon then still need to plant a few more beans, re-pot aubergines and cut the grass.

Wishing you all well, especially Gigs after your recent lego-operations, Smee after op, and all those waiting for results or having treatment.

sparklesunshine · 16/06/2013 08:53

i'm up :( (2:52 my time)

achey and heartburn and paranoid about my tingling hands and feet. then again i read something about 30% of people given a placebo but told it was chemo had their hair fall out so also paranoid about bringing it on. Mental dancing away! Hopefully some meditation cds help

topsyturner · 16/06/2013 09:41

Morning All

CADBURY WORLD ?????

Grin

Sparkle the 3am wobbles are the worst aren't they ?

Brief post this morning .
Off out for family meal at posh hotel shortly (fil pays for us all 2/3 times a year) to celebrate Father's Day .

Have to get showered , drug my hair into submission , and try and fin something clean and hole free pretty to wear .

We have to leave at 11.15 !
Aaaaaaaaaaaaaaaargh .......
Grin Shock Confused Grin

MaryAnnSingleton · 16/06/2013 09:45

Oh how exciting - Cadbury World and topsy's lunch out ! I bought dh and T a lovely Chinese take away last night and there's a wee something for him today...have got beer and chocs for my own dad
Am cleaning and doing a bit of work today,then meditation again this evening.

sparklesunshine · 16/06/2013 10:14

Thanks for the spot Topsy, chocolate sounds great.

I just figured out the fear is about fading away into nothingness. I've already lost so much, and will be loosing more, including parts my body beyond the already dead and gone hair. I would like to be able to fully inhabit the parts I have left. I'm bitter it just doesn't end.

FECing cancer. :)

trice · 16/06/2013 11:24

I had some lovely black pudding with my fry up this morning.

The kids have taken Dh out for fathers day. I am starting a new book.

Cancer still sucks.

Copthallresident · 16/06/2013 12:36

Sparkle You have had so many assaults on your self esteem, a relationship breakdown as well as bloody Cancer, plus a move home, but you do know that losing your hair and a pound or two of superfluous flesh that's gone rogue (as far as I'm concerned my boobs were done with once they had fed my children) is irrelevant to the real you? and you wouldn't have chosen that name if you didn't know deep down you sparkle Wink. I honestly realised once hair and boob had gone and I looked in the mirror that it was still me there looking back, that in the end it really didn't matter or make a difference to the me inside, and it will be the same for you.

Trice Yes it does. Love Black Pudding, we have a Laverstock Farm Shop down the road and their's is heaven.

Just back from our green festival where I was humiliated by my dog, it must be the time of the month but he was being very grumpy with other dogs but a complete tart with the humans especially the scantily clad Rio carnival girls laid on by the local travel agent who he refused point blank to leave, much to everyone's amusement.................. he's 9 so I suppose being a grumpy dirty old man is to be expected Sad

Off for tea with the inlaws, will need duct tape on mouth to prevent another bout of Thatcher tourettes, they practically have a shrine to her Hmm

I'll just think of Cadburys World, and a tower of that chocolate with jellies and candy Grin

HerNextDoorAt21 · 16/06/2013 13:23

Hi folks. Another day another soft play ! DH is working yet again (he works in medical assessment ward in the hospital topsy and i were imprisoned in)and we had to do Father's Day last night when he got home from work about 9.15pm .... DS(4) was struggling to stay awake !

kitkat I had yo have a vacuum pump to take away dead tissue that started breaking down after my LD flap surgery after mx. I have had unusually long winded and troublesome problems since my surgery .... Just call me lucky !!!! I would still do it All Over again though even with hindsight !!!

jchocchip · 16/06/2013 13:48

Gatecrashed a party yesterday evening Grin made some buns

GoodbyeRubyTuesday · 16/06/2013 17:37

Hello all,

I hope you're having a good day. I'm feeling better ish today after an okay night but forgot to take capecitabine this morning I think Shock oops.

trice what's the book? Any good? Cancer definitely still sucks :)

sparkle :( I feel similar. Like I'm completely lost really and don't know who I am, I'm just trying to get through the chemo and hopefully will feel more human after that, hopefully you will too :) it's all just so grim and soul-destroying isn't it.

malteserzz · 16/06/2013 17:55

Hugs to everyone who's feeling down its not surprising with this crappy illness Hmm
I've had a lovely day at cadburys world, they give you a pot of melted chocolate and you choose what to put in it, so I had biscuit pieces, ds had marshmallows and dd and dh had white chocolate buttons. Then further round you get more melted chocolate- we may have kept walking past that part Grin
Lots of free bars and bought more from the shop so I'll throw chocolate on the trolley

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