**TAMOXIFEN** 4th thread

[MaryAnnSingleton]

here we go !

MAS thanks for the link - will have a good look at that paper. It is comforting to hear that this is all normal. The mindfulness course I have been doing is sort of meditation and it is really quite hard. Have to practice an hour a day and then a week on Sat there is a whole day class where we are not allowed to speak at all (not even at lunch1) . We have to take "something nourishing" to share for lunch. Lady next to me is taking choc cake - I like her style!

KK - will have a look for that book you mentioned - will prob be at the library in the local cancer centre. Feel for you re DD going on trip. I know I will be in bits when it is my ds's turn.

Pennies, if it is any consolation I put on 1.5 stones during treatment. Have only mangaed to lose a few pounds so far.... of Cakes for wt loss.

Have to ask - who is Lenny?? Must have missed that bit.

Thanks to all for reassurance re post treatment wobbles. Tamoxifen SEs: joint pain - especially bad in heels - can hardly walk. At 3am tend to think have bone cancer . Wrists and back also sore (but could be mega session at allotment today?? ). Not getting much sleep and worst of all is no temperature control in body. I think my thermostat is broken. The hot flushes are really terrible. Sometimes I feel as if I am going to pass out - makes me worry about going to the shops etc. I'm going to see my GP tomorrow so we will see what happens....

My hair is coming in fast now but it is baby soft and really grey. I think I heard that you cannot dye the hair until 6 mths post treatment. Is this right?

Have to tell you about my DS's class trip to local farm. One of the kids saw a white horse lying down and shouted "it's a unicorn". great excitement until they discovered it was actually just a white horse.

btw - those of you who were talking about Kew - have you ever been to the Chelsea Physic Garden? I went last time I was in London and it blew me away. We are thinking of taking a long weekend in London in September (coming down by sleeper train for DS benefit) so I will have to try and fit in a trip to that garden and then up the road to Rococcos for a stock up of chocolate. mmmm....

Haggis I realise I forgot to put the author's name - it is here - your local C centre may well have it - that's where I borrowed mine from.

The SE from tamox. do settle down a bit after a while, but the hot flushes, lack of temperature control you describe are horrible, I used to feel really panicky with mine, I hope the GP can help you.

The 3 o'clock in the morning thoughts, - yes I can empathise with those too. But Tamox. definitely makes you achy (as does digging!), and the effects of your chemo/rads can take quite a while to get over. I have been told by someone who had BC 15 yrs ago that the worry about every ache and pain gets better over time.

The mindfulness sounds interesting, I went to a yoga/meditation day a while ago, and I think these kind of things can be very helpful. Anything that makes you feel you have some kind of control and can be pro active is a good idea in my book.

looked up mindfulness in my OCD book and it is apparently immensley helpful combined with CBT - it does sound quite hard to do.

Hi,
Yes I dod have IV chemo and rads yesterday. Funny, but although Lenny (its my PICC line Haggis!) means I have no vein struggles any more I think I am developing a Pavlovian reaction to just being in that chemo ward - still felt apprehensive/slightly sick sitting in the chair. Anyway, SEs have been not bad at all and steroids prob still active - certainly meant I only got 5 hoiurs sleep!

Haggis - Have you seen the tips about trying a 'Chillow' for the night flushes? Some people find they halp - available on Amazon for about £30 I think. I'm not lashing out till I see if I need one (she thinks hopefully)

O yes, Jude and 'Because we are too many ' or even was it Because we are too meny' - I have never forgotten that line.

I felt lucky when I got to uni because found we were studying Hardy as part of the tragedy series It was The Mayor of Casterbridge. Strangely I don't remember as much about it as of the others. But I enjoyed seeing it from a classicla tragedy angle - fatal flaws etc.

I've never heard of the Chelsea Physic garden but will look into it for a visit to London. Good tip!

Will have to look into 'mindfullness' as no idea what this is. Concern is how to do anything like meditation etc when will be back at work. (And trying to continue good habits developed while off eg daily walk, extra gardening, more fresh cooking etc etc. have even started doing a cross-stitch embroidery given to me by a colleague recently! Would never normally have the patience.)

KK - I am already dreading my DS leaving home in 2 years time - it wasn't so bad somehow when my DD left as he was still around. Will make the most of the 2 years though - we get on very well and have had some fab 'mum and son' holidays together. We share same sense of humour and somehow I know how his mind works - whereas my DH is the one who understands my DD's mind better! Love them both to bits of course.

Cupcakes - I hope your wick is working. Is it the one that smells just slightly of sea-weed?! I had one like that in armpit wound for 5 weeks and it worked well but I did worry that I might smell a little strange - a good friend assured me she hadn't noticed. Do you have to change it daily? I saw all the District nurses in the area!

Bloody hell the wick sounds challenging! hope it works though....

have always fancied the Chelsea Physic Garden - please someone, go and tell me about it as i never go to London these days!

Love Hardy too - Jude, The Woodlanders (tearful), The Trumpet Major (outright tears, wailing and snot). Also good for a real serious cry - A Tale of Two Cities: I finished it while on my lunch break in a busy city centre. Pretty embarrassing.

Haggis - if it is any comfort your SEs from the tamoxifen sound EXACTLY like mine. I also have episodes of brain fog, odd feelings in my head/mind that I can't really describe but may be something like anxiety... Not nice, but thankfully not very frequent either.

As regards hair - I was told not to colour mine for at least three months, but I'd check with the BCN.

No time today, but Chelsea Physic is wondrous. Took my mother there a year or so back. Totally magical old walled garden. Definitely worth a trip, we've been meaning to go back ever since, but Kew suits better as more space for highly energetic DS to run round.

Hope you're all good today, am in a rush with a deadline but SR, great you're okay-ish. Long may it last.

Pennies, you out from your fug yet?

x to all.

nope. in full fug today. managed to make an appearance at dd's sports day but back home now and going nowhere.

Am impressed you made it out. Hope you're tucked up somewhere comfy to get you through.

RWU, how about you?

Will see if I can find RWU on facebook -haven't heard from her for a while...
sorry you are in full fug Pennies - look after yourself

Alas I think she is back on the chemo so probably suffering a bit.

Haggis - forgot to say: don't be too [jealous] re weight loss - i am talking a pound or two and an almost imperceptible tightening up of the tummy. There is still a LOOOOONG way to go, and even this much has taken me five months of exercising three times a week, and not eating chocolate (much). At this rate I'll hit my target weight/size at about the same time as I hold my retirement party.

Cakes - even a pound or two is good as long you're going in the right direction. I was weighed at rads today and am trying to eat less now that I can't do my daily walk. I do try but 30 mins is about my maximum since I've been on CMF. On the foorball they keep talking about whether the guys 'have got the legs' or not. Well I certainly haven't. I'm hoping the second half of the cycle will be better and I'll get back to my daily hour! I have done some gentle gardening though, pruning and picking up. At least this stretches out the arms.

My other exerice is slapping on the aqueous cream with vigour.

Soon be over, though. I think rads do knock you about a bit, they certainly made me knackered and a bit down as well. Also, the skin keeps getting worse for a couple of weeks after you stop treatment: so keep up the vigorous aqeous slapping (it'll help the upper arms no end as well)

Thanks for the encouragement I think losing weight will help with my bad back - which is a bit better the last day or two (just in time for me to go to yoga tonight and upset it again).

Having a great afternoon - dd at a playdate. Yippee! (She is fab but a total livewire - kicking back is NOT an option when she is around)

I found rads tiring SR - and I wasn't even having them at the same time as chemo. I also found my legs got very weedy when I was on chemo and I struggled with stuff like stairs. So be gentle with yourself - and as Cakes says - keep slapping on the old aqueous.

Cakes I am v. of a pound or two. I am not shifting any despite my best efforts. I do feel fit, but my weight will not change. I assume its the thyroid (my sister says this is a good excuse to scoff whatever I want when I want) but I'd like to look a bit less squat!

Did I mention DS was looking at a flat last week? Well he's put a deposit on it today and moving in beginning of next week, it very nice apparently - overlooks the sea.

Our car had its MOT yesterday - it failed , but not too badly - will cost a lot less than we anticipated so that's a relief.

Also - I won £10 on the lottery on sat. (no begging letters please) so may treat myself to something small and indulgent.

Love to all, well done for managing the sports day Pennies. Sorry you're feeling whacked out.

If anyone has any suggestions about how to flatten my tummy (short of liposuction) let me know, it'll need its own postcode soon.

hooray for KK ds's new flat- especially overlooking the sea.
Whenever we win £10 on the lottery we buy ourselves a big thing of Roses (the edible kind)
Have been rushing about today -Sainsbury's usual shopping plus lots of butter and flour -then off to mind friend's dcs and collect youngest from sports afterschool club and dashed back to take ds to piano....
have left a message for RWU on facebook

RWU feeling very yukky and sleeping a lot poor lamb :-(

Poor RWU.

Pennie's hope you're out from under the duvet and out in the sunshine. Lovely day here. Shame I'm stuck in working.

Stuck in working here, too. Beats having no work on, I suppose.

Poor RWU.

Yay to KK's ds - a sunshiney, seasidey flat!!! Lucky I'm not the envious sort or I'd have to come and punch him on the nose.

my financial mismanagement has reached new heights. Bank has been phoning like mad - turns out I have forgotten to pay myself for two months.

oh cakes !!

Play the cancer card. Got to use it sometime Cakes. I'd bet they'll waive any and all overdraft charges. This fug needs to have some advantages.

Okay, am so suggestive that now I want a flat overlooking the sea. Can just see me walking the cat by the waves (haven't got a dog!).

Ooh there's a thought! Well done, smee!

Poor RWU send her loads of love if you are in touch MAS.

Hope you are feeling a bit better today Pennies, and SR not too tired.
How's the wick thing holding up CC, any improvement? How are you feeling now Smee? do you work from home? - don't overdo it.

Oh dear Cakes - did you manage to sort it all out? Dh and I are the king and queen of financial mismanagement - so can't offer any advice!

I too am of DS's flat. Landlord has let them go and choose any extra furniture they want from a storage place. It's near the theatre where he works most of the time so will save an awful lot in commuting costs. (before she left he said to DD - come and stay with me if mum and dad get too old fogeyish - cheek!)

Had a text from DD last night - treasure hunt has taken her to Strasbourg, Amsterdam, Luxembourg and she's now on her way to Berlin, where it finishes and she can choose where she goes from there. She said 'no chance for a shower, I stink. Rucksack weighs ton.'

She sounds like she is having a blast! Excellent!

Not sure if it is all sorted out, financial things bore me to tears: I have just stuffed the cash into the account and am hoping for the best. I always say I'll deal with it when I am less busy, but that makes me sound like a successful tycoon, when in reality it is just an excuse. Could easily find the time to deal with it if I felt like it.

I think RWU lurks so will see your good wishes

Ah Kurri, I want to be young again. A flat by the sea, or a rucksack and travel. Either would do me. Am jealous of both your children!

Cakes, money is boring. I'm bad at it too. DH despairs..

RWU, am sending you waves of anti-SE vibes. Hope they go soon and you're vibrant again.

Hi everyone, Best wishes and virtual hugs to RWU from me too. I hope you are lurking and seeing all our messages.

Thanks for tips re rads. Have slapped on more aqueous in the last half hour.

I'm doing well but a bit puzzled that suddenly yesterday evening I was able to walk for an hour with DH! Suddenly had legs again! Perhaps steroids still in system? Perhaps Epirubicin leaving system? Perhaps not bothering to take anti-emetics is helping? We'll never know! Anyway then couldn't sleep much again, but have had full-on day with Italian class this morning, rads trip then short visit round Ness gardens with friend who drove me to the hopsital. There was a stunning little collection of alpines - really beautiful - like little gems - perfection! And the kitchen garden was amazing too. (Sorry RWU - too much gardening stuff!)

I also want to look over the sea!

KK's DD sounds as though having truly brill time.

Bit whacked now so will put feet up. Have a feeling I'll crash down at some point soon.