TAMOXIFEN THREAD HERE ***

[MaryAnnSingleton]

Am sick of my messages never getting through - I have had 7 attempts to reply to Cakes' last post- am starting a new thread ....
this is what I wrote anyway.....

righto, this i my 7th attempt to reply on this thread - everything keeps disappearing !
My assessment is on 25th,and am told to allow two hours for it,crikey !!
Saw a lady in town yesterday who was having rads and finished at about the same time as me and she's just seen the onc. for her follow up - they are running very behind I know- so I emailed to ask about mine - I tie myself in knots in trying to be assertive yet not too needy or a nuisance - I suppose I just like to feel that everything is done in order. Am not worrying about my health -am sure breast is fine and dandy, it's more my emotional state which troubles me.
Anyway, they have made me an appointment but it's at the same time as my assessment so have emailed back and left a phone message...arghh !
Special thoughts for RWU today and of course KurriKurri - hope all ok..and of course you Cakes and Morph.

Hello all, Its just taken me 15 mins to read through all the posts - this is what happens when I turn my back for a few minutes

Pennies and BB good thoughts coming your way for your ops. you have both had tough decisions and experiences, but sound like strong determined ladies.

I'm HER2+ Pennies, and have been on herceptin for about 7months now. Its an intravenous drip every 3 weeks for a year. Takes about an hour to an hour and a half, (with allowances for flushing and general faffing about).

Its a bit of a bind, but has fewer and much less incapacitating side effects than chemo. I get a bit of nausea for a few days afterwards, diarrhoea and some tiredness. BUT - I know others on it who have virtually no problems, so don't worry, I carry on pretty much as normal. You also have to have an echocardiogram every so often, as it can affect the heart muscles, but that's an entirely reversible SE.

With regard to the BL mastectomy, I wasn't offered it, but for myself personally, if I had been I would have gone for it. In fact I'm going to inquire next time I see my onc. I haven't had reconstruction either, and am not sure if I want to.

Hope everything is OK RWU?? and appointment went well.

Book sounds like a great idea - I think trying to explain it all to your children is so hard (even when they're grown-up), you want to be honest but not frightening.

Mr KK had his op. (hurray) so a long day yesterday, left at 6.30, got home about 10p.m., they wanted to keep him over night as his oxygen saturation was a bit low. But he wasn't keen - I think they finally got fed up of his moaning and kicked him out . They've given him the salivary stone in a little pot to keep. . He's been showing it to anyone who doesn't get away quick enough!

Bleurgh! What does a salivary stone LOOK LIKE? Do I even want to know? (swooning emoticon).

Glad he is OK and home, though.

I have spent the last 10 minutes nearly wetting my pants watching clips from Total Wipeout on YouTube. God I am childish, I love that show. On last Saturday's episode I thought I might need to call an ambulance - was laughing so much that I literally couldn't breathe.

And I have so much work to do it is a mystery to me why I don't just get on with some

yack @ salivary stone - eeew
I was given a few baby teeth which were wobbly and taken out when I was having my spleen out aged 6 and kept them in a glass jar to which I added Ribena to see if they dissolved - cannot face Ribena now.
I shared a house at one time with several people,one of whom kept the jar containing his excised knee cartilage - yuck yuck yuck.
Anyway, glad Mr KK is sorted and hope he feels better very soon.
Am sure there is more we could do with a book -maybe something for older kids too

the jar was on the mantelpiece so we saw it every day....

Yes i think so too. Will have to have a think about format and funding....

I CAN'T think about body parts in jars. Yuk, yuk, YUK!!!

(And that's put me right off Ribena now)

sorry- didn't mean to leave you all hanging i'm having inter-vescular (i think that was the technical term- if not it just means direct into my bladder through a catheter) BCG (as in the live vaccine stuff ) then some other direct chemo, then possibly some venous chemo but no rads as apparently rads and bladders don't mix too well doesn't sound too bad and they can do it at the local general hosp so i won't need to travel.

Start on Monday with the first BCG, then Thursday for the chemo, then Monday for the next BCG etc etc etc for about 6-8 weeks. doesn't sound too bad, just might be a bit uncomfortable and sting when i need a wee, and feel tired, but as i can't remember the last time i didn't feel tired then it won't be too much of a shock to the system!

Was it roughly what you were expecting RWU?
At least they're getting on with it, and its at your local hospital. All sounds uncomfortable and exhausting. Will be thinking of you next week. Take care xx

RWU - so sorry to hear that you are having to have more treatment - you seem to be incredibly accepting of it all! I'm sending you best wishes for it...

I have read through loads of posts today but I'm afraid my brain is scrambled - the taxotere has finally hit me and I'm like a zombie. I know that several of you were asking about telling children (BB and Pennies?) and i just wanted to let you know about a book that i got from my local support centre. It was written by a lady who does the family therapy there and once I had accepted that I needed to be fairly honest woth my 6yr old DS I have found it invaluable. It is calleed "Mum has cancer" by Eileen Wheeler and the ISBN No. is 0-9551642-1-4. It is very non-threatening and matter of fact and there is a bit to colour in on each page. It talks about bad cells and medicine, about mum being tired and very importantly about how it is most definitely not the "fault" of the child (apparently kids often think it is because they haven't been good or something along that line). I read it a few times to DS and he often refers back to it e.g. is the strong medicine killing the bad cells now and when will your hair grow back.
Phew... that's my burst of energy for the day. Got to go now and lie down again. Have a good evening all......

thanks guys, Kurri- yes it was what i was expecting tbh, and the inter-bladder stuff doesn't sound nearly as horrific as some of the chemo i've been having. Obv the venous chemo that MAY follow will not be too pleasent but chemo rarely is i guess (as haggis is experiencing )

Haggis- sorry to hear that you feel yuk, taxotere is a horrible one isn't it, i had a combo with Taxol and i was truely shocking for months- dh was scared to be in the same room as i went a bit weird and randomly starting either crying or shouting Hope you feel better soon, get some rest and you'll feel human again soon i'm sure

Hope everyone else is ok (or as ok as can be!) i'm desperatly trying to get some knitting projects started so that i can get the tricky bits done now and then do the nice easy leisurely bits over the next few weeks- dd will have enough woolies to last until she's 5 at this rate

Hi RWU - thanks for the heads-up on that, you do seem to take yet-more-meds in your stride, it is genuinely amazing. Brilliant that it can be at the local place, so much easier. Glad it is starting so soon, will be thinking of you and holding virtual hands as always. As you say, tiredness is noothing new, could be worse (randomly shouting and crying for example, I mean to say )

Haggisdoodle, that book sounds great, it would have done my dd good, probably, with hindsight. I just bumbled my way through the whole thing really. Sorry you are feeling like poo, but each cycle is one more gone. Stay strong!

Good noght all

xx

Noght?? I think it may be time for bed....

oh RWU - good luck next week and hope it isn't too horrid...and sorry that you are feeling zonked haggis.
Must go to bed as ridiculously sleepy- no chemo to blame,just those antidepressants I think (or just plain tiredness)
Taking Ds to hospital tomorrow for visit to consultant to check on his spleen and have blood test -all will be fine but he will be in a flap about the blood test. Am also nipping off to see my BCN afterwards.
Take care all xxxx

I hope it all went well for DS MAS, and his blood test wasn't to horrid for him .

In case any one is interested, I've just finished reading this book.

Its stories of women who've had BC, how it changed their lives. each one a couple of pages long. With tips for coping, music and books recommendations that helped them.

Anyway - I know reading this sort of thing is not for everyone (in fact not me usually), but I found loads to identify with, there's plenty of humour. So I leave it to you to decide if you might find it helpful.

That does look interesting KK, I am never sure whether I will be inspired or depressed by these things. That's more down to my mood than the content itself, usually. I might take a look in the bookshop, though. Thanks!

I am reading a book about yoga at the moment as I seem to have got the bug for it. I may have overdone the class last night - teacher said I had "a very surprising amount of movement in my arm considering the surgery" (absurdly proud emoticon) but I am quite stiff in the legs this morning, I got down to get something low in the fridge for dd's packed lunch and couldn't get up again I may have to slow down my exercise programme a touch.

Hope all went well at the hospital MAS.

Good luck and positive vibes to all, especially RWU, Pennies, Haggis and Burning Bright (and anyone I have missed or lurkers I don't know about) who are all having active treatment. Stay strong!

I'm glad you're enjoying the yoga so much Cakes, I really look forward to my class. In fact I'm going to start going to a second one with the same teacher.

I'm off swimming this afternoon. I rather rashly entered a swimathon for Marie Curie charity. There's a section called simply swim, where you pick a distance and swim it over several sessions. So I said I'd do 10-20km. But have just found out I have to do it over 3 consecutive days. I normally swim about 1km each time. So have got until April to up my game a bit

My dad has finally moved to the local hospital. But his infection flared up a bit. And he's going to need quite a bit of physio before he's back on his feet. Social services are going to convert the living room in parents house into a sort of bedsitting room for him. Also send some one out every morning to bathe him. So a bit of progress.

Oh, that's good, at least he is getting nearer to coming home. But what a disruption in their home and their lives just when they need it least.

Blimey, that's quite a distance to offer to swim, I think it would take me a year! On a good day (which is rare) I can do about half a mile and that is my limit. On Tuesday when I went I did about a third of a mile and it went fine at the time, then i got tireder and tireder until even the prospect of chewing my dinner was too much and I went without! I think I have overdone the exercise this week, I think I need to pick my pace up more slowly.

Never mind I am off to an awards dinner tomorrow night (No, I haven't won one) so I can blow all my hard work there.

By the way, I am very taken with the new confused emoticon, I can imagine I'll become good friends with that, i seem to live in a permanent state of confusion these days!

It is too far for me really Cakes -I was under the impression I could do it over a couple of weeks,- but not so apparently. The trouble is after about 1km, my bad arm gets so it is just sort of flapping around uselessly, so I'm swimming one-armed (probably looking like an elephant waving its trunk!). Think I'll have to re adjust my target on my entry registration.

I think you have to pace yourself, its easy to get very enthusiastic and over do things. I sometimes feel fine when I'm swimming, but when I try to climb out of the pool my legs are like jelly. DH keeps telling me off for getting carried away

Have fun at the awards ceremony (sounds very posh and impressive)

glad your dad is making progress KK,though it does sound a bit of a long process..I do wish him well. Am impressed by your swimming and Cakes's yoga endeavours - you put me to shame. I did do the swimathon one year -ages & ages ago - I did the half marathon,whatever that was-can't remember how many lengths-seemed like a lot though.
Hospital was fine - consultant pleased with ds's blood from last year and no enlarged spleen -he is about average height and 25th centile for weight -if his blood wasn't ok he'd not be growing steadily. They did mention that one day he may have to have his spleen removed, but I think they'd wait until he was grown up,unless it became enlarged or he developed anaemia or jaundice. He always seems perfectly well and is seldom poorly,so am not worried.
He did well in his blood test- a bit nervy and and his heart was pounding away,I know because he was sitting on my lap ! Took him to Wagamama when we left the hospital to restore him.
I saw my BCN - we sat in the quiet room and talked about my OCD and the possibility of CBT etc - she is great - they must do a lot of psych. training I'd think..anyway, it's been really helpful.

Thank you MAS - it is a long process. Apparently he hasn't shaved since being in hospital and is now sporting quite a beard.

I glad it all went well for DS and that he had a nice treat afterwards.

It is lovely your BCN is so supportive and helpful, they are great aren't they?

very impressed with half marathon by the way, that sounds a loooooong way!

I was much younger then KK !!

I just typed a long message and lost it as mistyped my password. Haven't got the energy to re-do it now but love and support to those who need it just now. Am still just waiting for my underarm wound to heal so that chemo can start. Had a bit of a low day as had to go and see chemo hospital which seemed to bring it all home again. Bit better now though.

Sorry you're a bit down today SR. It can suddenly all hit you unexpectedly can't it? Just try to deal with each day as it comes, you are still in very early days and have been through an awful lot.

Once your chemo starts you will get into a sort of treatment routine, IME chemo nurses do all they can to put you at ease and make the whole business as comfortable as possible.

I put DH on stand-by for bad days. I would just say 'I need a hug' and he'd know it was one of those days. So am sending you a ,
and hoping you feel better tomorrow xx