*tamoxifen* 31- in the bus shelter with the cheap booze

[Gigondas]

Shiny new thread

MAS Topsy I think I mentioned before that we met a woman at the Marsden who had lived 18 years with mets and there are a quite a few who are several years on. As Topsy said they treat it as a chronic illness, and are developing new treatments all the time.

Welcome snails I wasn't Her 2 Neu but my friend who was treated at the same time as me was, and with 7 lymph nodes involved, and she, like me, is 11 years on. And she didn't have the benefit of Herceptin, even though she fought hard for it, at that time they wouldn't give Herceptin unless you had mets.

Overthemill I found that I got better quite quickly at first. I too was sleeping constantly and could hardly walk a hundred yards without fainting by the end of the last treatment, and I was very depressed but we went to Australia at Easter after my last treatment was the beginning of Feb, completely mad, but we had been due to fly out two days after my dx and I wasn't going to let Cancer delay it any longer. I was surfing and going for long walks on the beach, and feeling really really happy and elated as well. The recovery slowed down after that and it probably was a year before I was 100%.

smee I'm still waking up 3 or 4 times a night drenched, after it has taken me hours to get to sleep. Very annoying. I've been definitely post menopause since I stopped taking Tamoxifen so it is obviously part of my new normal.

ps smee DON'T google night sweats, the paranoia box will beckon. Just off to check with Mum whether she has found any Ashkenazi Jews in our lineage as I may have familial dysautonomia, or childhood mercury poisoning, or anorexia , or brucellosis, or..........

Copthall, what's made you suddenly worry about all of that?? And don't worry I won't get paranoid. I've had hot flushes since chemo started and have had scans since, so it's clearly hormonal. Bugger to hear you're still having them though. I naively thought they stopped quite quickly once you were through menopause.

Pen, yes paranoia is your new shadow. We have a special box for her to be stuffed in whenever she appears, so tell us whenever she rears her ugly head and we'll put our considerable collective weight on the lid for you.

Greylady, 25 years is quite something to celebrate. Have you made any plans, or is it too soon?

Do any of you fellow post menopause lot do anything special diet-wise? I was so wrapped up in cancer that I've barely thought about it. Am having a bone density scan in a couple of weeks to see if I can switch from Tamoxifen to something else. I think they said Letrazole. Bit freaked by the idea of new side effects and the calcium loss risk. Am feeling more than a little creaky already, so it can only go one way..

Well done on getting home Jane. Forgot to congratulate you on your wage negotiating powers. Most impressive!

Thanks for the congrats. Negotiation isn't really me, but it just sort of happened. I asked them if they would sponsor an exam and my new lovely boss said the best they could do was match my current salary so I said yes please!

Dh says we are in the RAC duh. I'll know next time. Quite nice driving through the Derbyshire Dales though and far less traffic...
I only get hot flushes sometimes. In a way they are good 'cos they mean the tamox is working, isn't it?

smee It was tongue in cheek, not really worried about any of those but there were some others on the list that could have me climbing on the paranoia box.. It was just that as you say I did assume that once the hormones settled down so would the side effects.

I do take a Calcium supplements to help with the bone density loss, in fact I took it right from being diagnosed but now it is actually on my Consultants orders. When my bone density scores ruled out Letrazole, my Consultant did suggest another drug that would also help with bone density loss like Tamoxifen - Raloxifene. In the end though he thought the benefit would be marginal and I felt I had had enough of drugs. I spent quite a lot of time after the dodgy bone density scan worrying that every creak was my crumbling bones but after a visit to the physio it turns out it is just creakiness, you have no symptoms of your crumbling bones until they actually break.

Actually it was Arimidex that my Consultant was hoping to put me on, rather than letrazole, the studies that showed it was beneficial for post menopausal women after Tamoxifen had just reported?

Thanks Copthall. I think there's been a relatively recent study saying Letrozole is now more effective, but that might be to do with my particular circumstances. I'll research it more thoroughly if they do decide to change me. Completely agree on having had enough of drugs. at creakiness being just creaky. Maybe we need more to oil our joints?!

Jane, yes I'd say hot flushes are a good sign.

who ate all the bloomin cake?? I turns me back for a moment and when I turns back someone has snaffled all the cake . Note to self - must buy bigger cakes and make sure I keep me eye on this lot next time!
And a nice old carrot cake it was too
I'm rather pleased with the new boobs smee, especially the fact they are two inches higher than my old and droopy originals! Everyone says they look amazing, I must stop flashing them at everyone who shows an interest
I also can't believe I stalked so long - what a shy retiring idiot!

:( not slept very well and alarm will go off soon ...
Hey ho time for a

Just popping on before breakfast to wish AtoZ big love for today. Just go with the flow, don't put up with nasty side effects and, most importantly, be good to yourself. Cancer takes some getting used to and you are still at such an early stage. Thinking of you loads today love x x x

Good luck AtoZ today. Thinking of you.

I am off to GP later to ask her to sign me off for the duration. I also want to thank her for sending me for the original scan that picked this up even though I had no symptoms. Good job she did no fob me off.

I can totally relate to having no symptoms then being made to feel ill by surgery. I am still waiting for that.

Good luck today AtoZ
Hope it all goes smoothly .

DS back to school today .
DD not till Wednesday .
Got appointment with dermatology today .
Still sleeping badly , and feeling very short of breath .
Must phone Onc today to see if can get apt to get scan results .

Happy Monday to you all , hope it's a good one c

Good luck atoz.

Hope your Gp appt goes well pen and your counselling ned.

Poor you topsy- I was going to ask how your skin was.

fingers crossed for topsy with dermatology -and for speedy scan results...
and to atoZ
Am sending off 3 roughs and doing a fourth... later T to dentist, hoping he'll get home speedily from singing lesson after school,otherwise we're in trouble.
Any cake left ?

Jane, that was shockingly early to be up and typing. Have you started your new job already, or is that some way off?

Hope GP is smooth sailing, Pen. Can't believe it won't be, but I hope they're kind and helpful.

Sending no SE vibes to AtoZ, and also wishing her friendly nurses and a sane ward.

When's HND's op, is it tomorrow? Think it is, so will be keeping all crossed for her too. Hugs here for both of you whenever you can make it back. xx

Topsy, I'd bet your breathlessness is stress. I had a stretch of it last spring before my bone scan, then again in September/ October. Then it was connected to my stress about boney breast bones sticking out, which I was convinced were lumps not bone iyswim. After Surgeon examined me and said it was bone the breathlessness went. I had a blast of it last week too, but this time it went faster, as I just told myself repeatedly it would and it was stress. Amazing how stress creates such havoc. Bloody annoying, but I'd honestly bet it's not cancer. Hope you get your appt soon and good luck at dermatology.

snails, your breasts sound tremendous. Mine are less so. Would describe them as functional, as look great under clothes, but are a bit alarming out of them. Long scars, no nipples and overly perky. Am amused by them rather than appalled, so that at least is something..

Thanks for book thoughts Baskets. You're right, soy isn't advised for me. I think I'll do a bit of reading round and see what I should be doing. good excuse to spend an hour or so browsing in bookshops Hope you get some rest.

Hope counselling's not so exhausting today, Ned. Can imagine this is going to be a tough week for you, so hope they can help you through xx

MAS, I need cake too. Well done on starting work again. Today's my day to start again. Got to shuttle DS off to a friend's, then will have to knuckle down.

Back from hospital .
Dermatology say no to starting light therapy for now . Too risky for developing skin lesions apparently .
She's putting me back on steroids for another 3 months and reviewing again .

Got call back from Oncs secretary , apt to get scan results is on 21st .
So will carry on with Canceritis Breathlessness till then

Anyone want a slice of toast with pâté ?

bah about waiting, but am sure breathlessness will be anxiety.

Topsy, argh re the wait!!!

Snails, helloooo! Welcome. And cake too? Hold on, there's just crumbs left...better correct that....

Voila - one I made earlier, honest.

How have you got on with the Herceptin? It hated me. I had to come off it pronto. Others fare much better.

Bugger about wait-and agree breathlessness is likely anxiety ortoo much toast. Hope steroids work.

I can offer some fairy cakes as mini gig spat them out (eyes mini suspiciously and wonders if was a baby swap at hospital , then remembers that mini gig is small version of dh). Have also ,are mini quiches which were similarly treated by big gig as contained tomato...

But did start on ou material... Scary but interesting. And feeling more positive as have had canceritis for few days so thanks for all those who did a shift on the box.

Atoz how was it? First one is the worst.

Pen/ned how bout you?

Blimey Topsy, that's a wait - seems mighty cruel. Can't you get onto BCN to see if they can shift it earlier? Annoying about light therapy too. Surely you need a trip to somewhere sunny. Tell your DH it's medicinal.

Gig, how much do you have to read before you start and how's the shoulder today? Any better?

Topsy What we need is SUN , perhaps we should get out of the bus shelter and on a plane , we could continue the cheap booze theme....

The waiting for scan results is torture and your mind really does hijack your body, smee and MAS are so right. They should do something about the waiting times, they must have noticed the gibbering wrecks that turn up for the results after all the waiting (well this gibbering wreck anyway). I am so awful at it that my Chinese Oncs receptionist took to giving me a reassuring smile, and Chinese receptionists NEVER stray from the protocol, but I think the sight of the gweilo losing face so completely, I did actually pass out once, was more than they could stand to witness, or I was disturbing the Feng Shui of the waiting room, and it was easier to break the rules than buy a fish tank....

GiveHND my best wishes, I am going to be so jealous of her new boob.

smee at lumpy boney breastbones, I do see what you mean has a quick feel of lumpy boney breastbone Also be careful of diet, I have been taking Co enzyme Q10 since dx because there was a study that showed it benefited women with BC, Dr Geek approved, and it is also good for creakyness. Now there is a study that shows women with higher levels of it have an increased risk of Breast Cancer (no direct correlation of course, could be explained by other factors) Aaagh, it's like Soya..... I give up, I'm going to live on Broccoli, until someone finds out that is dangerous too.

jchocchip that was early, I thought DH's alarm was evil, getting him up at sparrow's fart, at 6.15. DD was very grumpy at 7am. "It's soooo dark, they shouldn't make us go to school at night"

My fake boob is dying, spewing goo everywhere but there is such a bewildering choice, ones that stick to you, ones that droop, this one was supposedly slanted towards my armpit to try and match my real boob which is actually under my armpit so that didn't work and they are so expensive plus I am trying to loose weight and I don't want to face the reality of a prosthesis that is as actually as fat as my good boob so I don't want to end up with one bigger than the other though fake boob is smaller than the other especially in it's goo spewing state

Hope it's all gone well with AtoZ

Gigs "Scary but interesting" and scary means it will be all the more satisfying when you do really well. I've had boring admin to do all day which was so frustrating when I have interesting stuff waiting. A day in the British Library beckons. Do you have to search out primary and other sources, or do they provide it all? If not the BL is wonderful, I feel very clever just walking in. I also have external access to JSTOR, you probably get that with OU but I can give you my password if not.

Also does your massage lady practise at the place at the end of Clifden Road, there is someone advertising lymphatic massage there?

Hello ! skulks in sheepishly I am sorry I have been absent .... Not being at work and trying yo get Christmas done etc for five kids while trying to get ready for surgery has taken its toll ..... Tipsy says she has filled you in that my surgery to remove whole right breast due to DCI S is tomorrow .... I am having LD flap reconstruction at the same tomorrow ..... I
Am actually really scared .... Please keep me in your thoughts and I hope tipsy will update you tomorrow .... She's an angel and minding our kids in the morning while my DH takes me to hospital ..... Don't forget tipsy !!!!!

Evening all Opened some rather tasty ginger Christmas tree biscuits earlier from Christmas hamper when a friend came round for coffee. Help yourselves. . .

counselling went OK, hard work again though. Talked about fear, ghosts, God, 16th century choral music (he's a bit of a music geek like me!), rational and irrational, intuition, what I was like at school/ university and Mindfulness, among lots of other things. I cried less, which has to be positive, right? I think I am starting to see a bit more clearly what we need to work towards. Seeing him again next week.

MAS could you possibly send me a link to some Mindfulness stuff - we touched on it so briefly today, but it was interesting, and something counsellor thought might be worth exploring. Would like to read some more about it. Am coming from complete beginners position - only heard the name from you talking about it on here! Thanks

topsy that's quite a wait for results - boo! Can BCN not expedite it for you? Seems an inhuman amount of time to have to wait. . . I think a holiday in the sun is absolutely the way forward. Shall we all pop round and start lobbying DH for you?

gig well done for making a start on your OU stuff - I guess it will feel less scary as you begin to get our head around it? Glad canceritis has passed and you're feeling more positive

arf @ snails tremendous breasts! I guess not being appalled by your own boobs is definitely a positive thing smee ?! Is DS back at school now? How is he getting on? I do think of him sometimes and wonder how things are going.

DH's alarm set for 4.45am tomorrow . He's got to get a flight to Edinburgh. It is bordering on domestic cruelty. . .

Waves to all - sorry to anyone I've missed out. Hope you are all cantering on through this rather chilly Monday evening x x x x x x x

X post HND thinking of you lots and lots for tomorrow lovely x x x x