TAMOXIFEN -the third thread ***

[MaryAnnSingleton]

here we are- will put a link on the old thread.

Sorry, just sneakily poking my head in to say that this is the most fab thread.

I have two close members of my family going through this horrible crappy stuff at the moment.

I don't know whether they are on here, not sure its their "thing" but its such a brilliantly supportive place for people to feel free to off-load, share, laugh, cry whatever.

With positive vibes for you all to be free of this soon.

thank you noarguments -that's a lovely thing to say- so sorry about your 2 family members though.

Hi all,
I've just had re-excise lumpectomy (margins not clear first time round) and finished my chemo in mid Feb. Hair growing back, Radiotherapy in 6 weeks hopefully providing I dont need further surgery. Your posts are great. I'm a bit bad tempered at the moment, grouch grouch! Can't wait to put this behind me and get on with my life. Why in the hell do I have BC anyway? Sorry but did warn you, moan moan.
Hope you're all feeling good tonight.
Superspoofer

Thank You all for your kind words,not really sure where or if i fit in here,just playing the waiting game at the moment.
I have been told i have a benign breast tumour,although am worried now as when they tried to do biopsy couldnt get in or around cells so went underneath,does that make a difference?
Havent been very well on off for years,though more so in last four..
Have just payed for my notes going back 28 years and am shocked and hurt that i have just been thobbed off,and to some exstent still are..
Got blood test in morning and only 2 more weeks til back to doc to see if tumpour has shrunk..
I know it wont as in 1999 I had a very large oviran cyst,which in 6 months grow over 25cm,over 3 litres of fluid and over 7lbs in weight...
I am very worried and feel that unless I get a few answers then im going to end up being very poorly,or worse...Have so many other health issues going on and am scared of my body shutting down on me...

Sorry for the ramble,and hope things are looking a bit brighter for you all xx
P.s yes my son Jack is 5 this yr and my little girl will be 8..

welcome superspoofer - we don't mind grumpiness.
Ebbie- sorry you are feeling so frightened -it must be a very difficult time for you.

Cakes and RWU - head thing on 20th April- on his notes regarding the last thing it read 'arterial bleed' -eeeww

Blimey Cakes, 56 lengths - well done. I am so envious. I am v nervous about swimming during chemo due the low immunity and also having further op soon, so feel a bit that I can't get into a pool for ages. But I do plan to have a fantastic spa break when this is all over. (I know a great place in Scotland and a great friend to go with )

Ebbie - sorry you are so troubled. At least if its benign that's good for now?

Superspoofer - I hope you won't need any more ops and that you can proceed to the end of this track - sounds good to be approaching the rads, hair back and chemo over!

RWU - hope you have resisted all temptations to go wildly shopping from your wheelchair and let yourself recover. You'll have to sit still and count your nice scabs for a few days to get your strength back up.

Meanwhile I am seeing my manager today, but I think its just a social visit. But first I still need to sort my DD out so must go to Post office.

Welcome Superspoofer and welcome back Ebbie22. Thanks for your kind wodrs noarguments. They're lovely ladies aren't they, I come on here far more than any other BC forum because here gives me the right level of info, advice and support - everything else is a bit too full on for me. I love the fact that here we talk about other stuff as well, so it's not all encompassing and for me it's important to remember that life goes on around cancer, not cancer happening around life IYSWIM.

Superspoofer you can moan and grouch as much as you like. That's what we're here for. It sounds like you've done the lions share of your treatment already. Are you having radiotherapy after your surgery? How did you cope on chemo? As to why did we get BC - my 4 year old DD asks me this often. It's just rotten bad luck. If I try and think beyond that i get too angry.

Ebbie22 - gosh it sounds like you've been given the run around somewhat. I think if you feel that you're still being fobbed off you need to develop a strategy whereby you are getting all the information you need at every stage now. Try and have someone with you at each meeting with the doctores (ideally the same person so they're not starting from scratch each time). Also take notes on what is said and if you've got any query on stuff go back and get a definitive answer that you are satisfied with. I'm the sort of person who takes information in, takes a day or so to process it and then I have further questions and I've managed that by writing these down and talking to my Breast Care Nurse afterwards, so this might be a good resource of information for you too. IME not knowing about stuff is considerably worse than knowing about stuff. If you ever feel that someone is dismissing you make sure you tell them that you're a mum of young children facing a diagnosis of BC and you have a right to be absolutely clear about your situation because you need to prepare your family for whatever treatment you will be facing. If you feel worried about saying that work out a sentence that conveys that sentiment in a way that is clear but suits you and rehearse it many times before your meetings so that it trips of the tongue easier. That will make them take notice, I'm sure of it. I hope this has been of some help and that I haven't just lectured you on stuff that you're already doing. I just feel worried for you because you sound quite overwhelmed at the moment.

Off back to the cliinc for blood tests prior to tomorrow's treatment and possible blood transfusion (oh god I so hope I've got enough neutrophils to have treamtent) and also my Look Good Feel Better session. Should be fun (the LGFB bit, not the blood test).

Hi RWU, glad you are home. at the cost of the bed and over the Cath Kidstons!

MAS - no wonder if you went wobby if he netioned the word 'oozing' - yak! Can feel myself going wobbly at the thought. Hate, hate, HATE that word. Good luck for 20th (and 8th, I haven't forgotten, but it'll be fine )

New people - welcome! noarguments, I hope your family members get through this soon. It is horrible, and I must say I am a bit about all this hooha in the news today, apparently research has found that breast screening is beneificial. Well duh!

Superspoofer - glad the hair is on its way back already, that is a major boost. keep moving forwards, well done for getting so far. Jump in and post with us, we're all at diffeent points on the same journey so you can say anything to us (we were even talking -ahem - discharge last week, and no-one had to get embarrassed it was great)

Ebbie - I had no idea you were so distressed and worried. Get the breast care nurse on your side they are a massive help.

PS - sandrpples, the pool I go to is half length so don't be too impressed, it works out at about 28 of a normal sized pool. As regards swimming while on chemo - I asked my oncologist and he said to go for it, but I guess it depends how well you are doing generally on the chemo (I was pretty lucky) and also how hygienic your pool is. Ours is a private (not posh) leisure centre and it is quite good, I wouldn't risk our municipal one (but then I wouldn't risk that one even now, not unless i fancied a mouthful of hair, washed off plasters and assorted bacteria anyway)

once when swimming in Richmond swimming pool half a hotdog (with ketchup) floated by...

and thanks for kind wishes for mammogram

I thought all that article on Radio4 this am a bit odd as it seemed to be about DCIS really, without mentioning the invasive types of cancer. I thought it would be pretty confusing for women who have not had to go through the whole learning process about the many different types of cancer.

I think it was basically saying that DCIS might not merit treatment but that screening does nevertheless save many lives (presumably mostly from the invasive types). My chemo brain might not have been keeping up though...

Thanks for reassurance about the pool length Cakes! I'll wait a while as I go to the local High School pool....

Pennies - I look forward to hearing how the LGFB session goes. I haven't been to one, but could be interested. Would be a slight trek I suspect as they don't do it at my hospital so I'd have to go into Manchester.

Hi all - welcome to everyone new. Sorry to hear about your family members noarguments, -I'm sure you're concern and caring will be a great comfort to them though.

Superspoofer - well done for getting through the chemo, hope you don't need any more surgery - onwards and upwards is the way to go

Ebbie - so sorry you are going through such a rotten time. The early days can be such an anxious time. It is awful to feel you have been fobbed off. Pennies post was full of good advice, - I can't really add to it, but good luck.

Hope everyone else is not too bad, good luck for everyone having treatment in the next few days, fingers crossed yours goes ahead Pennies.
Take it easy RWU no zooming around in that wheelchair -hope the shingles is less painful now, and breathing problems under control.

I am currently hobbling around like an old lady, feeling as if I've been hit by a truck. According to oncologist it is because the herceptin has a cumulative effect so SE getting worse. My legs and hips are so sore. Getting rather peed off with it all. [whinge, whine, moan]

I've done the LGFB, - and it is great, you will have a really good time, its a lovely few hours of pampering. Hope you enjoy it

Sorry about that big old whinge - I know lots of you going through worse at the moment - but if I put it down here, it means my poor old family don't have to listen to it. Feel free to skip the moans!

Sorry to hear about the hobbling KK. We'e all a bit under the cosh at the moment I think, for different reasons. I want some warm weather, it would cheer us all up!

Kurri, it's really nice to hear you whinge every now and again actually, makes me feel so much better since I've got a gold medal in moaning.

Ebbie, I'm sorry to hear you're having such a rough time. I too have found not knowing and waiting really is the hardest part to deal. I hope Pennies post helps you to get what you need.

For me, the only way I've managed to cope (apart from wonderful family/friends/MN) is to try to think about only on what I know. If I spend time trying to work out what might happen or what they're not telling me, it drives me insane. It's not easy but I'm getting a bit better at it. I do hope you get the answers you need soon so that you know where you are. Good luck

poor hobbling KK

Been out all day so catching up.

ref the hotdog!!

Hope all feeling OK today, KK I didn't know herceptin made you all achey, what a git. Are you near the end of it yet?

Thanks all - I've never taken to it all that well Cakes, but I think some people have relatively few problems with it. SEs have not been anything I can't live with though.Its just building up because I'm getting towards the end now (4 more to go).
Not complaining really its a wonderful drug which gives a good fighting chance to people with Her2+ cancer.

at hot dog. I try not to think to hard about what may be in our pool. Mind you if anything odd did float by, there's a chance it could be my prosthesis come adrift and doing its own laps

KK sorry to hear about the hobbling, but great that you're into the home straight now.

I went to the LGFB thing today. I had high hopes of being shown how to do false eyelashes, options for eyebrow loss, advice about the impact of parabens in cosmetics etc.

No. We got given a bag of goodies (some very pukka stuff in there, Dior, Cinique, Mac etc) and basically given a make-up lesson by a very annoying bloke (think: John Inman in a very bad mood and you've got him). What the whole session missed is that it was a bunch of women in the same totally crappy situation getting together to try and feel better about themselves and life. John Inman wouldn't let us chat at all, thus ignoring the fact that when a bunch of women who are all in the same crappy stuation as each other get together they want to talk and share experiences. So whilst we all looked glammed to the nines we felt a bit cheated.

However, about 5 of us stayed on after to talk and that hour was the most enlightening hour I've had that wasn't with a dr since this all kicked off. There was one woman there going through a terrible time with her chemo and she had no idea that what she had experienced wasn't normal, and another woman there who had had a temporary reconstruction showed us her breast and it looked amazing, so that was very encouraging. Most of the women at the clinic were also on the AC - Taxol regime that I'm on and I've encountered so few online who have had that and it was great to share experiences of that too.

Now I'm not saying that you lot aren't my rock or that I'm gong to dump your for RL BC mates, but it was lovely to talk to other people about this!!

Tomorrow is a big day. I've got to have a blood bath transfusion which is going to take 4 hours and then my chemo drugs so I'll be stuck at hospt all day. Luckily they've gone and booked me room so I can take my puter and annoy you lot all day. You lucky things.

good luck with that tomorrow Pennies -and the time spent after your John Inman session sounds really good.Take care

Good luck for tomorrow Pennies - its great that you found some people to talk with after your LGFB, sharing experiences with people is the most helpful thing in the world, (and definitely worth putting up with John Inman for)

KK at prosthesis.

Pennies - pity about the guy yesterday but good that you had the chat afterwards. Good luck for today - sounds a lot for the day. Will check in later to see how you're doing!

hope all is going well Pennies
Not so good here -re assessment was another 2 hours and I think I'm not going to get CBT - I function too well really -it seems awfully unfair in a way (though I can see their side) to hold it all together (which is hard work) and not then be able to have the treatment that I know works well for me.

Yes Pennies, don't envy your day at all, hope you manage ok.

MAS that really isn't fair, surely if you feel you'll benefit from CBT then it should be available to you?

Kurri, how's the hobbling? Hope you're feeling better today.

Just since we're talking about swimming and prosthesis, are the nhs ones no good for swimming?

Got my review with the consultant at 3.15, so fingers crossed it's all good news.