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Original poster

Tamoxifen - advice please !

562 replies

MargaretMountford · 27/05/2009 11:20

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 !

OP posts:
MaryAnnSingleton · 07/09/2009 21:23

have tried to respond on your other thread - thinking of you lots xxx

reallywoundup · 07/09/2009 22:14

thanks- i will still pop on here from time to time and i really do want to still help you guys in any way i can! I don't want to bring my 'stuff' onto here as you ladies need the cheerful side of life!

I'm in that weird limbo atm- tears have just appeared and i think i need some time to reflect more than accept- therefore i'll be around trying to ignore things for a while- tbh at the moment what i need is to forget it and carry on for a while and hopefully things will spring into some sort of shape .

I may start a blog in the next few days- somewhere to vent without bringing down the tone here- i'd rather be able to pop back and see the funny side on this thread!

I hope i haven't upset you lot- it means so much to know that other people are having to deal with the crap that life throws and in your cases with dignity and a touch of humour! Much love and speak soon x

MaryAnnSingleton · 07/09/2009 22:51

we're here for you anytime you want to vent reallywoundup , or just cry,swear or say anything...am off to bed now but send you love xxx

reallywoundup · 07/09/2009 22:59

ah good, in that case "bollocks"

xx night all

MaryAnnSingleton · 08/09/2009 08:38

!

Cakesandale · 08/09/2009 11:50

Reallywoundup

Only just got on here and have yet to view your other thread, which I will do in a minute.

But just wanted to say, much love and many positive vibes to you, you are being so generous to us here. Come back often and vent, or have a laugh.

Thinking of you and yours

xxx

Cakesandale · 08/09/2009 12:54

MaryAnn

Let us know how you get on with the tamoxifen when you have had a few days of it: hope it will be OK, will think of you.

Incidentally - there seems to be a more upmarket version of myself on reallywoundup's other thread, (which I have now accessed and responded to, albeit in a completely inept way)

Cakesandfine wine??? Clearly my smarter and more couth sister! Bet she is also better dressed and thinner! (And I speak as someone who has just spurted tomato seeds all over herself....)

MaryAnnSingleton · 08/09/2009 16:11

arf ! I did think that you'd gone upmarket after your fancy weekend away, but the post didn't sound like you !
Will report back on the tamox. - so far so good.xxx

Cakesandale · 09/09/2009 09:56

Glad to hear things going well so far - long may it continue.

xx

reallywoundup · 09/09/2009 11:17

i'm off shopping! nothing better than retail therapy with mil and her credit card (i think its her way of coping iyswim!) we are going to get all the kids winter bits and bobs and stuff to do up the boys bedrooms an some nice comfy 'loungewear' for me

Tomorrow i have to travel halfway across the country (well to liverpool!) to see the next oncologist- he wants to assess everything and give his professional opinion as a friend of the family. So until then i shall concentrate on spending, spending, spending

PS i'm feeling a lot more upbeat what will be will be..... etc

Hope the tamoxifen is going ok mas- just take it easy as it may hit you suddenly and make you feel tired- of course we hope not and you are bouncing around like tigger

Cakes- where are you with your chemo atm?

MaryAnnSingleton · 09/09/2009 11:31

retail therapy - excellent !!
Am glad you are feeling upbeat and really hope tomorrow's meeting goes well - will be thinking of you.

Cakesandale · 10/09/2009 10:26

ooh shopping - excellent - always works for me! Hope you got some nice schmutter!And a MIL with an open policy on credit cards - nice!

Hope the meeting with the oncologist goes/went well, and that you are feeling upbeat, it will stand you in good stead.

As regards chemo - yesterday I had number 5 (of 6). And at the moment I feel fine! Possibly the best yet, although I may collapse later. They are having increasing trouble finding veins as they can only use one arm owing to risk of lymphodema in the other, but they are muttering darkly about trying it anyway next time - but I am not keen so may ask a nurse friend to stick it in a plaster cast for safety . Prob not though, I am too compliant in medical situations, (but not in RL).

Worst thing for me with chemo - and I know this is not very bad at all - is my body seems to retain water like crazy for the first few hours, but i get a raging thirst - and then the bladder kicks off at around 2 in the morning! From then on it is a constant march to and from the bathroom for the rest of the night. DD wakes up every time:

DD: Hi Mum, need the loo again?
ME: 'Fraid so. DO you?
DD: No
ME: Then go to sleep!!!!
DD: OK. Love you!

She is very sweet. And got voted in as class rep yesterday - not sure which of us is prouder!

But, leaving the hosp yesterday we met a couple we know pretty well. She had just come out of an appointment having been diagnosed with a brain tumour. Eeeek! Not malignant - thank God, thank God, thank God - but the size of a tangerine, and surgery sounds like it will cause some lasting problems including weakness on one side and difficlulties speaking. What a straightener.

reallywoundup · 10/09/2009 10:47

mil feels incredibly guilty that she is unable to do childcare etc as she wouldn't cope (bad hips etc!) so her way of making up for it is buying anything we need

So our shopping trip- we raided Jojo Maman, Next, Debenhams, Mothercare to name a few! Spent a small fortune but have enough clothes to last all the kids until next summer also new shoes for them all some bits for me and then she whisked me into Curry's to buy me a new dishwasher we have one that is only 18months old- but has a mind of its own and very rarely works without persuasion, but i have been coaxing it along in order not to pay the £105 to get the engineer to come out and go " ooooooohhh, big job this love..." so we now have a space where the old one was and apparently the new one will be here by 1pm!

We are leaving now- sil is waiting for said dishwasher and will be getting the boys from school for us- should be back early evening so will update then

MaryAnnSingleton · 10/09/2009 11:36

shopping trip sounds excellent and dishwasher too ! Will be thinking of you this afternoon xxx
Cakes - your poor friend - good that not malignant, but still
Well done to dd being class rep too - she sounds a sweetie

Cakesandale · 11/09/2009 09:15

Hope it was a good meeting in Liverpool reallywoundup. Was thinking of you.

New dishwasher sounds excellent, I always like a nice new electrical appliance (don't read too much into that ), and the clothes sound excellent too! I have some elderly In Laws this end as well, but they not so open handed with the money (in fairness they have not got much).

maryAnn - still Ok on the tamoxifen? Hope so!

Thinkig of you both. Have a happy and restful weekend, you both probably need it. But I am going out for wine tonight. Yippee! Probably not much of it though.........

MaryAnnSingleton · 11/09/2009 11:16

yep,still on the tamoxifen !
hope you both have good,relaxing weekends xxx

Cakesandale · 11/09/2009 12:09

Hi MaryAnn

my question was -are you still OK on the tamoxifen? I wouldn't dream of telling you to stay on it. That would be a tad bossy even for me.

Just wanted to know that you are still feeling OK with it.

Hope so - enjoy the sunshine over the weekend xx

MaryAnnSingleton · 11/09/2009 14:17

ha ha ! yes,thanks, am ok - not sure if I'm imagining aches or if it's because I'm tired, but am feeling fine - relieved to have started in a way,so that I don't have the question of should I or not hanging over me !
Have a nice glass of wine or two tonight (I shall !) and a lovely w/end. Love to reallywoundup too

reallywoundup · 13/09/2009 19:21

Glad to hear the tamoxifen isn't seeming too bad MAS- i guess when you have been on it a while it will just become another part of 'life' and you won't even have to think about it is it a 5-year course?

cakes- nearly at the end of chemo for you then (watch out for the return of hedrin ) hope the next blast goes smoothly- have you a port or hickman or do they use a venous line? i have had my port replaced as there was a problem with it and i have now been told it will stay put- they don't tend to take them out

Well Liverpool was an eye-opener- they do everything so differently in a big city, the hosp felt so faceless and clinical but was considerably cleaner and fresher than our little district general! we have discussed with the second consultant, who then rang our local consultant, who then was particularly vague about everything. BUT the upshot is, i am going to go for a mega chemo blast, mega radio blast AND a hormone based drug trial all simultaneously- that way i will feel crap for a wee while BUT they will be able to guage pretty quickly if there is any effect on the cancer. The consultant in l'pool is a family friend and is a great believer in a 'natural' lifestyle, so i am going on a detox diet and vit supplements. Dh has been joking that by the end of it i will glow green and smell like a fruit bat

Who knows- the power of belief and all that , i've got nothing to lose and a whole heap to gain if any of the mumbo jumbo(!) actually works! I am booked in to start being chemically and radio zapped later this week, i am already taking the hormone-y thingy wotsit and i have just had a melon and apricot smoothie [yak] i believe i am having some raw vegetables for my dinner with a highlight of soggy cardboard (some form of grain thing) to liven it up [yak][yak]

OH THE JOYS!!!!!!!

MaryAnnSingleton · 13/09/2009 19:55

wow ! that's some purge reallywoundup !! how do you feel about so much at once ? will be thinking of you a lot..my silly things pale in comparison xxx

reallywoundup · 13/09/2009 21:10

well- you know, if its a choice between.......!

Seriously, it will be horrible i'm guessing, but i've got this far- it would seem a bit feeble to give up without a fight!

I shall spend the days polishing my shiny new dishwasher I have been told that under no circumstances am i to leave the house unless absolutely nescesary (due to infection risk) and if i have to go anywhere i MUST be accompanied, oh and i have to inform the DVLA who will more than likely suspend my driving licence [boo hoo] so dh is buying me a ds, and has downloaded some new apps for my ipod touch- i may well go stir crazy for a while!

BUT i get out of doing the road safety awareness course at school (was forcefully made to volunteer to take 28 snotty nosed brats on a walk across some busy roads to teach them to look left, look right, look left again!) and no school runs and the best bit- dh will have to brave morrisons

MaryAnnSingleton · 13/09/2009 21:35

at your dh braving Morrisons !!
The more I think about it, the more I think you should go for everything - it might be the wine talking (had a few glasses) but I think it is worth a good blast..meant to ask, do you ever look at the Breast Cancer Care Forums ?

reallywoundup · 13/09/2009 21:50

i try to stay away i go onto the what now forums but the bcc ones are centred on BC and its treatment iyswim- its not bc i'm fighting with atm its pelvic- and i'm firmly in the ignorant camp as well dh has banned me from google-ing anything!

I'm going to give it a blast (literally) it can't make things any worse can it! At least this way we will have an idea within 8 weeks of whether it is worth carrying on. they will scan me weekly and blood tests at every possible opportunity so we should get a clue pretty quickly!

MaryAnnSingleton · 13/09/2009 22:01

yes, can see what you meant about forums - the BCC one has had interesting discussions on secondaries etc which I've been reading ..
good luck with everything - will think of you lots and send love xxx

Cakesandale · 14/09/2009 09:39

Hi both

I seem to have missed a lot so have just been catching up. Wow, RWU, it does sound like a lot, but you seem really to have made up your mind to go for it, and good for you. It has got to be worth it.

It's great that you are seeing a family friend, and that he advocates the healthy stuff, I think it does make a difference, tho' you can go too far. i have a friend who keeps advocating me to make juices and soups form scratch, and to eat sprouting seeds - i don't have the time for the juices and soups, and sprouting seeds stink, let's be honest.

I guess you are going to feel a bit crappy for a while, and I will be thinking of you. At least you can be home for most of the time and they are not keeping you in, which is the worst.

Keep polishing the appliances, listen to some great music, and pamper yourself when you feel able to. A bit of nurturing and a lot of positive thought is definitely the order of the day now! And at least you get out of the school duties. Hooray! (Today I have got out of a school trip to a rubbish local attraction called "The Beach" (did i mention I live about as far from the sea as is possible in this country??) - I usually get roped in but now I think they are giving me a break. Every cloud has a silver lining!

Keep eating the cardboard! You know it makes sense! (Gulp)