Tamoxifen - advice please !

[MargaretMountford]

Am going to be starting Tamoxifen shortly, was just wondering whether anyone else is on it and can tell me what it's like ! thanks !

Hi

Have been, did have to get undressed again, but all fine. Gratifyingly they seem fairly confident about things, and he is going to try to fast track me through the rest of it as he says they are v. busy but he does not want me to be finishing around Xmas as he says radio makes you feel a bit crap, which would put the mockers on the festivities.

he has advised me to put off the smear for three months - so a temporary hooray! to that. Chemo might give some odd results if it is done sooner.

Mind you, dd will be hacked off. I told her i might have some dates after today - she is mad to go on holiday, which obv. we can't book yet.

Also, meant to add - i am going on a research trial to try to find out the dietary/lifestyle causes of breast cancer.

Apparently, 20 years ago there was a 1 in 14 chance of catching it. Now it is 1 in 9.

I have to turn up once a year, take a blood test, and tell them all about my vices. I hope there is going to be cake.

urghhh- i'm still here, feel pretty terrible BUT i had good news today, i have a shiny new blue disabled badge and i am entitled to DLA and therefore i don't have to panic so much about money- was self employed and didn't have a terminal illness pot of money set aside (stupid me- or so the woman at the benefit office told me ) so now my Macmillan support worker is going to start working out what we could be entitled to- seems to bit a bit of a minefield.

Car is also alive again- apparently i kept running out of electric because my fan belt was too loose, and that was also the cause of the horrifying squeal that happened when i pressed the go pedal (can you tell i'm not too into cars- just prefer watching Richard Hammond!) so nice garage man fiddled with his spanner and sent me on my way and didn't charge me (and gave all the kids a lollipop!) because "you've had it tough love" usually i'd have walloped him but hey if i save some pennies he can say what he likes!

i'm off to scoff the ben and jerry's that was less than half price in morrisons (that means i can eat it all without feeling guilty )

arf about cake !!!!!! interesting though...
Really I shouldn't worry too much about rads and feeling crap -obviously everyone reacts differently to things and of course having had chemo you might well still have the effects of that in your system- almost certainly in fact..but I think you might find it a breeze in comparison..truthfully it was fine for me,the burnt bits tolerable..just tiredness really. Good news about postponing smear -yay ! (but I know you will book it after rads
A holiday after everything sounds the very thing too !

oh we must've posted simultaneously RWU !
Good news about DLA and disabled badge and nice garage man. I signed the petition about DLA cuts for my friend who is in fear of hers being cut by £70 or something a week (can't remember exactly) -she is wheelchair bound,was a teacher but is very disabled by Friedreich's Ataxia - horrid,horrid thing..very frightening to be worrying about money. Hope you feel less terrible v soon though- Ben and Jerry's sounds like excellent medicine.

oh blimey are they going to take it all away from me??? Well, i live for the short term now- what will be will be and can be dealt with when it bloody well happens

It is fab news because it sort of opens up entitlemant to lots of things iyswim- i could get a motability car, get free road tax, FREE SCHOOL MEALS!!!!! which saves me £36 quid a week and various other things like carers allowance etc- all in all it is a sort of acknowlegement that i am truely, seriously, and not making it all up ill! It also means that i am now classed as a numpty old fuddy duddy who can't be trusted to fill out her own forms so i had to sit with the --dumb- - arsed council bod for an hour while he decided if we get a reduction in our council tax (which by the way we don't until wait for it.. in his own council charm school taught words... "of course when you die your husband will get the single persons 25% discount" cheers mate!)

Radio is fine- once you get into the routine it just becomes part of your day, i felt really weird when i last finished radio because i walked out wondering what to do next, 'active' treatment was finished and it was almost like being thrown out of the door without any further explanation- i'd got so used to it. Aloe vera, lots of water and aqueous cream and you'll be fine!

love to everyone x

at council bods sensitivity & tact !!
Am sure they won't give and take away again though..
I agree about the end of rads - that was surprisingly difficult as I did feel pretty much chucked out at the end and on my own..not true as there is always the link with bcns and the breast unit,but it was a very weird feeling and I did feel very emotionally churned up -almost a physical pain ,if that's not too dramatic sounding.

at the difference between the attitudes of the various council/benefits type people and the nice garage man! Some people just make your jaw drop with their sheer insensitivity, don't they? Flipping heck!

Glad you are getting some help, tho' RWU, worrying about money is the very last thing you need.

Consultant warned me about the 'feeling cast out' thing that you have both mentioned. I can imagine it will kick in for me, I was a bit like that when they made me stop going to physio nine months after breaking my thigh. (But then I am a drama queen). I had to be virtually forced out the door - saddo that i am, it was a bit of an outing for me each week And apart from the obvious bleurgh factor of having strangers feeling you up all the time, there is something quite comforting about someone with a lot of qualifications telling you that everything feels fine, isn't there?

I think the living for the short term thing is something we should all try to do - worrying about stuff that will nprobably ever happen is knackering. And it is always the unexpected thing that hits you out of left field that is usually the worst, anyway!

by the way, as I know MAS in particular likes to read up about this stuff, the research prject is about phyto oestrogens and their effects on breast cancer. I had a quick look on Google yesterday, to see what they were and whether I should be eating them or not - seems complex, I think I need to look into it a bit more...but it may be of interest. From my cursory scan it looks like they are preventative if you don't have BC, but act as an accelerant if you DO have BC. So that's alright then

I am just rubbish at the ending of things I think - I find loss and finishing and leaving behind so difficult- even if it's difficult or painful stuff - I think transition and change frighten me.
Interesting you mention phytoestrogens - was talking to my hairdresser yesterday and she was telling me her mum who is in the middle of rads has given up on tamox. after a very short time because she was experiencing pains in her hands and because she was never very happy about taking it in the first place (she was also thinking of stopping rads -I cautioned against this one !) She was hoping to go down the healthy eating route and I was trying to say something about soya and phytoestrogens but couldn't decide whether they'd be good or bad ideas (obviously need to research this !) Before my dx I was v keen on soya yogs/milk/the bread with linseeds in it -have been having occassional soya yogurts since. I also used to take selenium religiously along with lots of green tea but have not bothered with selenium since - green tea I love. It's all very confusing I think. I guess the thing would be to just eat all stuff in moderation !

The phyto oestrogens thing does seem so complex, it is so hard to know what to do in our cases, but it seemed pretty clear that they were protective in pre pubescent youngsters. I think I may start putting soya into stuff for dd.

Not sure which way to go for myself though. I will take a bit of a look when i get some time.

It is all complicated - chemo people took me off all supplements except evening primrose and multivits, but Cancer Research site even advised agains those, so I stopped. Not sure whether to restart or just eat sensibly. I'd like to restart milk thistle, which I had thought would protect my liver - would like to retake now to cleanse it after all that yukkiness. Think I need to call the BCN.

This afternoon i am going to take dd to see UP in 3D. Clearly this is more for me than for her, but it will earn me some brownie points anyway!

hmmm...certainly is complicated..good idea to ask bcn about supplements and milk thistle etc.
Haven't been to the cinema for ages - have a lovely time - it looks v good !

Am really, really looking forward to it! (And to the McDonalds afterwards! - it is not usually my thing, but it goes with cinema trips like day follows night, for me).

MorphFan - I am not going to be around tomorrow as I have to go and learn something dull about websites - thinking of you for friday. Stay strong! All will be well. And hope to hear from you as soon as you are up to it afterwards.

xx

Hi everyone - gosh a lot of posts since I last popped in! I think the end of treatment 'syndrome' is perfectly normal, I think there's a certain security about knowing you're going into the hospital - and I speak as someone who was totally hospital-phobic before all this. I haven't reached the point quite yet though as I still have ten months of treatment to go (Herceptin).
With regard to living for the short term, when I had my second surgery, I was talking to a nurse who had had BC nine years previously. Her advice to me, which I've tried to follow, was 'deal with what you know, and don't worry about the don't knows.' Of course its sometimes easier said than done but I remind myself of it when I feel myself going into 'flapping' mode.
'The Plant Programme, Eating for better health' has some interesting dietary ideas in it. The author had BC and the programme is basically non-dairy, organic, non-processed foods, more vegetable than animal protein etc. Its worth a look at, if only for recipe ideas. I am sort of aiming towards it, I haven't cut out dairy, but I've tried to reduce it and replace with soya. Essentially I'm trying for healthy eating and cutting out the crap I used to sometimes eat. I tend to cherry pick from various books (our Big C centre has a good selection) I think I'm still in the process of working out an eating policy that works for me, and lets me feel as if I'm taking back some control.
Goodness that was a bit of a ramble - if you got through it all well done!

wise words from that nurse KurriKurri - it's hard though not to think ahead of yourself.
My SIL entered into quite a strict non-dairy,healthy eating regime when she was diagnosed - I do think it's a good way to be in control of at least one part of your life. Today I exercised my healthy control thing by having an Innocent smoothie instead of a Starbucks coffee frappaccino which is my passion (I'd also bought peppermint creams from Waitrose but this is countered with a box of nice green tea !)
Cinema = Wagamama for me...and hospital appointments with ds also =Wagamama !!

Hi KurriKurri

Defd got all through it,and thanks for the advice, I will def have a look at that programme - you are right, taking back control is absolutely critical. It is hard leaving the security of the hospital, especially as all the drs and nurses are so lovely.

I am going to try the eating things you recommend, though - thanks.

I have resolved to try for one self nurturing thing every day. Even if it is just putting cream on my horrible feet. Or having a face pack. or having a meditaite and a breathe for 15 minutes. I think I have deserved it - and so have all of you!

Hello All - after my brief flurry of activity I've been rubbish at keeping up with you all - again!

Have been busying myself with lots of things - some good (I've had all my hair chopped off and it looks fab!!) and some daft (cleaning windows - why do I feel the need for the house to be spotless before I go in tomorrow .)

Will catch up properly when I'm back. Am hoping to be home Monday. If I don't reappear perhaps you could send me a virtual cake with a virtual nail file and I'll stage a breakout .

am crap at healthy eating- have to eat stuff that resembles cardboard as part of the reasearch thingy i'm doing- tastes foul and then gets washed down with swamp goo [urghhh]

i left the house today- all on my own i honestly never thought the day would come when i felt proud that i could walk down the road alone went to toddler group with dd- it is a nice escape because i'm not sure anyone knows much (apart from perhaps one who is a mn'er, but if she knows anything she is being wonderfully discreet- thanks if you are looking !) and tbh there are a few drama queens who always have to go one better so i just switch off for an hour and let dd wreck the place.

i start radio again next week, daily chemo drugs are being stopped on Sunday so just down to radio and weekly chemo, cardboard and swamp goo- oh joy!!

Also going to buy a new wig at the weekend and look at cars, we are very tempted to get a little run around motability car and get rid of dh's juice muncher (will have to keep my beast as i don't think we could fit all the kids in a clio) but would mean that me and dd could take a sensibly sized car down to the shops rather than causing the same level of environmental damage as a small country- should save a bit on juice as well. still thinking though atm- seems to be too good a deal to miss.

hey MorphFan -glad you popped by -was thinking of you this morning - am glad you had lovely hair cut,that is very cheering and good for morale and can so identify with the household preparations -exactly what I'd do !!
Lots and lots of luck and good thoughts winging their way to you and look forward to hearing from you as soon as you feel up to it.
Well done with your outing RWU and good luck and lots of good thoughts to you for next weeks radio. xxx

thinking of Morphfan today- obv you won't see this til you get home, so in advance i hope you feel ok and everything is going smoothly.

Hi all

Posted a little note to MorphFan yesterday as I din't think I'd be here today. Don't know where that's gone - shame, she'll miss it now. Wishing her lots and lots of good things anyway.

Congrats on getting out unaided RWU - if the chemo is stoping Sunday there should be opportunities for a bit more of that soon. Car thing sounds a good idea - and cheery - go for it!

Healthy eating is something I am into in a big way -would not go so far as the cardboard and the goo, but I am defintitely majorly into fruit and vegetables. It is just wine and chocolate that are my downfall. Sigh.

If anyone is thinking of seeing 'Up' I can throughly recommend it. We went to the 3D version which cost a packet but it was lovely. Worth it just to see DD looking like one of The Proclaimers in her massively oversized glasses ( my sense of humour is quite peurile so this was enough to set me off straight away). And then the film started and we all laughed and all cried, and came out really happy. It is brilliant.

Hi all, just popped in to say thinking of MorphFan today, and wishing her all the best for her surgery.

Well done for getting out RWU and good luck with your radio next week. Cardboard and swamp goo sounds a bit yuk though, does the cardboard come in different flavours?

Glad you and DD enjoyed your film Cakes, I've heard good things about it, so may try and get to see it - don't know if DH would be willing though, so I'll have to wait until my DD is next home.

After I got home from herceptin treatment this morning, I somehow managed to fall over, and now have a large carpet burn on my face! Its an attractive look as you can imagine . Am just off to see if I can find anything to put on it, its a choice between aqueous cream, savlon or aloe vera gel - whichever stings least!

ooh carpet burns are extremely painful, aren't they? They are also often the cause of much sniggering around these parts, (I think I mentioned our childish senses of humour here) especially when on the ankles, knees and bum area - not sure if one on the face will be exempt from that or will be thought even worse!

We took dh to see Up with us, and he enjoyed it as much as anyone. Mind you, he is a great big softy, I think that's where dd gets it from. Normally I am made of quite stern stuff, but it is very, very heartrending in places, albeit in a very sweet sort of way. The old couple's realtionship is just so beautifully done. But also laugh out loud funny. Hope you get to see it.

I have been crap all week, not into work at all, I keep trying but just can't settle to it. Like MorphFan I have been cleaning and clucking about instead. No excuse, not feeling ill or anything. I think I may have morphed into a lady of leisure - shame I don't have the income to sustain it!

owww about carpet burn !!
I am turning into an old person I think -have just bought a new hotwater bottle and am so joyful !! I did think I might regret it is tamoxifen gives me hot flushes, but so far it's ok.
Went to my book group last night (Picture of Dorian Gray- which I couldn't read - too wordy,too tiny print and I just couldn't concentrate - I'm only reading things these days in small chunks -very sad) So I didn't have any useful contribution to make, plus I was driving so couldn't have any wine which always oils the conversation ! I ate a fair number of crisps and things and suffered a bit of house envy as the host groupees house is very big and very lovely.
(I do love my house though small)
Am glad that the film was good - I cry at all sorts of stuff in films though am quite a stiff upper lip type of person- I think if I can shed a tear in the dark it's ok !!

MAS - DH pottered out of bed last night into the kitchen and eventually returned carrying a hot water bottle 'I was cold' he muttered sheepishly. I have been known to wander round the house with a HWB up my jumper because I am too mean to put the heating on energy conscious.

My hot flushes have settled down a little bit now (started tamoxifen in April) though I do still get them. Its more an inability to regulate my temperature - I can go from really cold to hot and sweaty very quickly. I quite often have a fan on at nights - no wonder poor old DH needs a bottle!

I know what you mean about books in small chunks, I love reading usually, but sometimes it hard to summon up the energy isn't it? I've got 'A Thousand Splendid Suns' out from the library at the moment, intended to start it during treatment this morning - but ended up browsing a fact sheet about flu jabs and slurping a hot chocolate.

The carpet burn is turning into a black eye . Don't know how I did it - one minute I'm upright, next I'm on the floor making a pathetic whimpering noise. -You can tell I'm an elegant sophisticated woman can't you?

oops my strike out didn't work, never mind.