******The 36th TAMOXIFEN thread******

[NedSchneebly]

You all out there? Pop this way!

Loads of good vibes heading MrFiggy's and Figgy's way for tomorrow xx

Those muffins sound good Earth (although I shouldn't have one because I was round at someone's house this evening and she had made two cakes - a fruit cake and a Victoria sponge, and she insisted I try both )

(((hugs))) malt - you will get bad days when it all gets a bit too much, but I think you just have to go with the flow, acknowledge you are feeling low and have a cry if you need to. xx

Gigs - short and sharp means at least you will be done with it fairly quickly, but hope it is not too painful.

Waving to NJ, trice, jchoc, coorong, Smee, topsy, gracie (hope your Mum is Ok - just read she had a fall, and hope that you are OK after lifting her)
love to all (and everyone I've missed too of course)

Just popping on quickly to wish MrFiggy all the best for his op, and hugs to Figgy.

Waves to everyone else, I shall be on properly tomorrow I expect, had a very lazy day today too tired to even type I'm having my next infusion tomorrow, after an appointment with Dr W which I'm not looking forward to as he will probably be angry that he was wrong last time and I ended up in hospital!

Anyway love to everyone and lemon drizzle cake for the trolley :)

Good luck for infusion tomorrow Ash (and for appointment with Dr W, - have you practiced the 'you were wrong' dance to show him? )

Ash Hope it goes well tomorrow but I favour a "So what have you got to say for yourself" look. I probably wouldn't have the guts but perhaps if you practised in front of the mirror.......

Figgy All best wishes to you and your husband, hard to be the one looking on and caring so much.

I hope it's OK to post here. Basically one of my closest friends (unfortunately we live in different countries, she's not in UK and neither am I now) has found out that she has stage 3 triple negative breast cancer. She's got the BRCA1 mutation and had had her ovaries out a few months before and was being monitored for breast cancer so I don't know how it got to stage 3 already. I'm so devastated for her. Her lovely mum died 10 years ago from ovarian cancer and basically the chemotherapy just didn't work and the cancer kept spreading. We all have that experience at the back of our minds. It doesn't help that the Angelina Jolie story has broken at the same time, making her feel like shit for not having had a mastectomy (although I think she was incredibly brave for having her ovaries removed which was very difficult - she'd wanted a 3rd child and had just lost a pregnancy in the second trimester, her last chance).

How do you think I can help her, support her? I don't think she's really up for long chats on the phone so I've been emailing her to let her know that I'm thinking of her so she can respond in her own time. She also asked me to send her any info I can find so I've been trawling the net and sending her positive stories and info on treatment options. To be honest, so much about the triple negative, especially for younger women (she's in her late 30s), is so depressing that I've been filtering it all out. I'm guessing she'll find it on her own (but I hope not) so I'm trying to counterbalance with positive stuff and things she can discuss with the drs.

Any advice or info on triple negative breast cancer will be gratefully received.

Thanks

Hi Kungfu

I'm triple negative (plus inflammatory which bumps it up another notch). It's really fast growing, especially in young women (I'm 35), so not surprising it moved quickly. Supposedly that also means it responds really well to chemo.

Sounds like you're doing all the right things and you're welcome here. I'm sorry your friend has to deal with this, especially after she's taken the drastic steps with her ovaries.

KK - ouch shingles! Hope they clear up soon.

My oncologist is great. He explained the surgeon's position better (apparently they don't take much less skin out with a mastectomy than a lumpectomy, which seems odd but ok) and was also very reassuring. My lump is getting harder to find () and shaped like a doughnut - big around the edges but almost gone in the middle. Hopefully it means good things. He also insisted I talk about when I make it 2 years, not if. So.. when I make it 2 years clear I'll be very happy for him to say he told me so.

Hi kungfu

I would avoid net as tends to focus the more negative/desperate stories as in general terms, people tend to post in need but when things going ok , they are getting on with life so don't hear about it.

On brca gene, they are now finding that this can help target chemo and make it work better (cousin with ovarian cancer and brca gene has found this). Things have moved in last ten years so your friends treatment won't necessarily be same story as for her mum.

Just keep in touch and listening - you sound like a lovely friend.

Awake at 3 as on post appt adrenaline surge (and felt achy)- going to take it easy today. Hope ash appt goes ok and Copt has lovely day at Chelsea.

Morning all. Sending good luck vibes to Mr Figgy.

Sorry to hear about your friend kungfutea. I don't have anything useful to say but you sound like a good friend. I hope everything goes well.

Ash - you could try a pitying look with Dr w. Perhaps a head tilt. He deserves it. Good luck.

I am very envious of all this cake talk as I am trying the ketogenic diet at the moment. All butter and no toast. It is giving me something positive to concentrate on, but I do fancy a muffin!

Morning from me. Thinking of figgy and good luck today ash

Had some horrible anxiety dreams and I am starting to think I went back to work too soon. I still feel I want to hide away and not talk to people but I can't afford half pay so I don't have a choice. Not sure I knw how to just get on with life yet and I know I have my scan in September so still feel very much that it is not all over.

Next week we are off in the camper back to Devon and Cornwall on a mini tour.

Hi kungfu sorry to hear about your friend. It is a sneaky bastard disease. But they have picked it up and will throw everything at it now. Has she got a date for an op yet? The diagnosis is a shock but we have all said that the anxiety reduces once we have a treatment plan.

Dh left car lights on last night, he found out this morning when went looking for phone... Think he is stressed.
On bus for work, at least I managed to get out fairly early today. Will make a when IT get there :)

Stupid phone I not IT. Why can't it do easy one letter words?

Watch out on Chelsea coverage for woman laid snoring in flower bed, as managed 3 hours sleep between Little Copts pre exam anxiety and sleeplessness and DH finally returning from going on a bender with his team because the you know what has hit the fan again Feel like emotional sponge but hopefully pretty flowers will relax me zzzzzzzzz

Morning All

Welcome Kungfoo
Amber is our stats queen , so I'm sure she can give you proper info to give your friend .
Too much info available on the web is out of date , so it's very hard to know what to believe .

Good luck to Ash and Mr Figgy today .

Gigs have a nice restful day .
How did the school apt go ? I always feel like a naughty little girl at parent/teacher meetings ...

NJ the financial aspect of this is a bugger isn't it ? I was self employed , and lost my income immediately I was diagnosed .
As if cancer isn't enough , you have to worry about going down to 1/2 pay .

Trice does that diet mean no (gulp) bread ?
Don't think I could manage that

Morning Jane , have a cuppa for me please .

Cop make sure you wear something floral . So that when you fall in the flower beds , you at least blend in .....

Copt have a lovely day with the pretty flowers
Ash hope it goes well today.

Hope mrfiggy doesn't have to hang around too long.

For Copt (and jchoc)- poor little Copt but doubt hangover will help dh. Hope flowers perk you up.

Nj- it's hard about need to work but think anxiety can bite whatever you do. Trouble with this is you never get off the worry treadmill once you are dx which is what makes it such a head fuck. And I don't think it always helps knowing odds etc cos that worry worm Id there. Just have to keep on and cope as best you can. That's why it helps to vent here to those that understand.

Topsy- I have been talking via diary to teacher as am a cowardas avoiding school run as too much made me achy. Problem is big gig not doing what she asked meant mucked up an assessment. I know she is young but can't keep on like this.

She also doesn't seem to care/understand what problem is so have been scrabbling round for sanctions. The Barbies are going in bin if this keeps up as its about 3/4 time come up (and I am here so can't use the being unsettled argument so much) .

Am bloody knackered as up at 3-may have to go back to bed.

Good thoughts for figgy and het dh.

Morning all
Hugs and strong coffee for everyone who's tired
I slept ok and have been back to my gp this morning for another 2 weeks of sleeping tablets, usual warnings about addiction etc but for me they do really help. Also got her to check my moles as had become convinced that I also had skin cancer she said they were fine phew
Off to hospital for Pre op tests in a bit

Trice ketogenic diet sounds rough is there anything nice you can have on it?
Gigs how old is big gig? Hope the teacher is being helpful. I teach reception and year 1 please ask if there's anything I can help you with
Copy have a great day hope the sun comes out for you later
Hi to everyone else

Been watching the news about the tornado this morning shocking to think how many people have died and homes schools etc all flattened how sad. Puts own problems into perspective a bit.

Good luck with tests today Malt
It will be a breeze !

Gigs I avoid the teachers as much as poss too !

Right off for a shower , then got Important Phone Call to make .
All bank , money , bill related . I am spectacularly good at burying my head in the sand about these things , so it's a Very Bug Effort needed to pick up the phone

am back !! well,back yesterday but totally done in after a lovely day out (walked a long way too)
Loads of good thoughts for Mr figgy today and to ash and anyone else having appointments- oh and malt am sure you'll come back from pre-op thinking it was all easy peasy- the anticipation is always the worst thing.
Sorry if i've missed anyone but am in a big rush to do stuff before support group...
Welcome to kungfutea and very sorry to hear about your friend- please stay here for support and jolliness... am sure amber can reassure with useful stats. Avoid googling though.
Am lusting after one of the fab Neal's Yard aromatherapy vaporiser things- they are a lovely shape and change colour and the smell is divine- want,want,want...can I justify it as medicinal ??
Friend bought lots of amazing stuff when out - scarves and a cardi from the Gudrun Sjo-something swedish clothes shop -Neal's Yard frankincense serum,lovely cheeses and we both bought sweeties from Sugar sin - oh and I had 2 margaritas !

Ooh yes, MAS of course it's medicinal. Bet you could get an on-line discount too.

Kurri, how are you today??

kungfutea, so sorry to hear about your friend. But as the others have said things are improving with treatment all the time. Tell her not to google, as you only ever get the dire stories. And tell her about all of us - still very much here and talking about cake. Ask us anything.

notJ, I think being through treatment's very tough, as there's nothing to fix on other than worry. Maybe the summer will help.

Topsy, make that call. Remember to use the word 'cancer'. One of the few times it's useful.

Gig, is mini-gig having fun, got friends and liking school? If so, well I reckon that's all that matters. I really wouldn't worry about it - let the school handle it and have home as home. Not like you haven't got enough on atm.

Waving to all, mad work deadlines as ever. Thinking of Mr Figgy though. Hope your pre-op goes well too, Malt. And your infusion, Ash. Home soon I hope - not like last time, which I seem to remember was a bit epic..

welcome back MAS - well done on long walk. Yes to Neal's Yard being medicinal - there's no question, you need to buy it

Loads of good thoughts to MrFiggy and Ash and good luck to Malt for pre op - hope you don't have to wait about too long.

Copt - have fun at Chelsea, - don't trip over the 'for one year only' gnomes

topsy - much sympathy for bank phone call - I hate doing anything financial and banks are so

Gig - ((hugs)) about school, - you are right she is only little and will attach no importance to school and education, it probably seems like an irritant she has to endure for no good reason to her - Maybe the Barbies could be temporarily removed and earned back with good behaviour?

trice - good luck with the diet, - it ketogenic the high protein thing?? - I could certainly do with cutting out bread it makes me feel fat and bloated, am much better if I don't eat wheat - but always fall off the wagon

NJ - I think anxiety dreams are very much par for the course unfortunately - I seem to remember all of us having spates of them at some point. They are certainly something you could do without, - when you think about it you have gone through some massive changes, treatments, and anxieties in a very short space of time, - a huge amount to cope with -your brain is probably just trying to make sense of it all in your dreams.
Also - I think some drugs definitely give you odd dreams (don't know what you take, but I found zopiclone gave me v.anxious dreams)
I think there is a lot of adjustment to the fact that cancer treatmetn and recovery is a long term thing - we get used to being ill, going to the doctor and getting it fixed, and then we are hit with something that doesn't really go away, -it is hard to get your head round - I think it's all about what amber calls 'the new normal'
loads of hugs anyway, - I hope you find a way round it, - even if that does involve a change in work times/more time off whatever. xx

Gosh - I've rambled on again - apologies.
Welcome Kungfu - I don't know a great deal about triple neg, but I do have a friend who was DX with tripleneg stage 3 at the same time as me (five years ago) she had chemo and radiotherapy and is doing very well.
It is hard for your friend having lost her mum to this illness, but as everyone has said, treatments are changing and improving at a rate of knots.

I think as far as supporting her is concerned, - take her lead, be there to listen if she wants to talk about the cancer, but she may very well just want to hear all the normal everyday stuff you normally chat about. Macmillan do lots of helpful leaflets and downloads and I think there is one about 'talking to people with cancer' which you might find useful - (just google macmillan cancer website and go to their publications section).

I think its important to remember everyone is an individual people, and a lot of the stuff you read on the web is very negative and may well be out of date and inaccurate, breast cancer care are another organization that do lots of informative leaflets and I'm sure they will have one on triple neg.

am stopping now - this post is sooooooooooooooo long. Sorry

meant to wave to Jchoc - grr to lights left on though.

My brain is barely functioning, Dh stayed up until 3.30 am playing his game, disturbed me first at 2.30 when he sent the dog through and I had to get up and lift her on the bed, then an hour later when he came to bed and crashed out, but I sat up for the rest of the night with raging shingles pain - and couldn't take more meds because I'd had them before I initially went to sleep.

This morning's conversation

me: ' you were very late to bed last night - you woke me up
DH: my game was very very exciting
me: but you woke me up at 3.30 and I couldn't get back to sleep because my shingles hurt.
DH: yes, but my game was very exciting [bemused 'what aren't you understanding here?' face]

[resigned] [tired]

at DH, Kurri. I know it's the Aspergers stuff, but still bloody insensitive and out of order. Go curl up and let Old-Lady-Dog fuss round you. Hurling nectarines on the trolley for you. Got a punnet from the market this morning and they're delish.

oh grrr - that's really not on kk - I'd be pretty peed off.