TAMOXIFEN thread number 8 ********

[MaryAnnSingleton]

just in case we run out of space !

Ooh Kurri you are in the Mumsnet Talk Roundup! You filthy woman!

Figgy I hope you've slept well.

Pennies - if you're reading this, just wondering why you still have a port - do you still have to have some chemo? Or perhaps I've misunderstood..

I'll ask the boys to look out for that preserved body at UCL!

Today's news? DS and I have just been out to reserve a kitten from local RSPCA - I promised DS we'd get one when my treatment was over so kitten is overdue now! He's chosen a gorgeous one - ginger and white. Lovely warm ginger/caramel stripey effect in parts. Now called Oralnado and he'll arrive on Wednesday as our home has to be chcked as suitable first. (Mental note - must move the mouse poison)

MAS - I haven't quite followed all this project about books but I think its this w/e so good luck (visions of MAS dishing out thousands of books from a truck....)

I hope the young Sparkles are Ok and that the finger is healing

I hope you had a good night Figgy and the painkillers helped. Also hope you are feeling OK today LGF.

LJ - what can I say? - I'm a slattern

SR - IIRC, the body is dressed and sitting in a chair wearing a top hat or similar. (And again IIRC - I think at some point in the past the head fell off and was replaced by a false head. - Pretty gruesome I know!)

The kitten sounds gorgeous, ginger and white is lovely colouring - is he long or short haired?, Getting a new pet is always so exciting , Our first dog was from the RSPCA when we were first married - a lovely black lab/terrier cross, and I remember an incredibly tall woman in a sweeping long cape coming round to check our home was suitable for him

I survived shopping with DD - we just had a quick look in GAP after her hair cut, - I think she's going shopping for a dress when she gets back to Sheffield (she also mentioned borrowing one from her friend - which sound improbable since said friend is about 6 ft tall and DD is not!)

Hope everyone is having a good weekend - MY DH is giving out Seamus Heaney poetry for WBN, so if anyone wants a copy PM me your address and I'll send one (I have Smee and MAS on my list) - but I need to know before Monday because that's when he's giving them out

Ooh yes, Happy WBN to MAS - hope the giving goes well.

SR, kitten sounds gorgeous. How exciting. We had the RSPCA visit. Very thorough they were too. They went into every room and even told us never to leave the toilet lid up, which I thought was overkill - especially as they'd missed the open pot of paint stripper, DH had helpfully left out.

I want to go on the taster days at UCL. Am most jealous. Bet it was hard to get onto too, so your DS has done well. Kurri, fab story about Bentham's head.

Been out in the park with DS for most of the day and two of his friends. So funny watching them all creating their imaginary worlds. I'll miss this phase when it's gone, though I now can't feel my feet, as they're so cold. Not quite spring yet then. I will thaw out with a glass of wine later.

Hope Figgy and LGF are feeling okay today and that little Sparkles hasn't got a sore finger any more. Waving to all -wishing you .

jeremy bentham
Happy WBN everyone- all my books have homes allocated-will distribute most on Monday (posting to smee,Cakes and kk) !
glad shopping wasn't torturous KK !
How exciting about the kitten SR
Mum is home and settling in -they were lying on their bed resting after dad's home made soup !

MAS - I see my recollection of the facts about Jeremy Bentham was slightly hazy

I'm glad your mum is home and resting, is she mobile at all or is she still fairly restricted by her injury?,

Well done for allocating all your books happy WBN to you too - I see there are a few interesting looking book programmes on BBC2 tonight

Hmm rather fancy watching progs about books actually but on way out shortly for DH's birthday meal at local Thai restaurant - it'll be very good but the wind sounds rather chilly! Still I've dressed up now and had my hair cut again this morning, so I'm all set!

Good luck with all the books!

Have read up on Bentham thank-ou for link.

I get very envious just reading uni prospectuses - they all look fantastic.

mm,hope Thai food was delicious !
We watched the book things, but slightly irrritated by the wankishness - they do talk a load of tosh really. I liked the Sue perkins programme.
Mum seems to be moving pretty well- dad rang up this evening to say there was a fire engine outside my friend's house -hope everythings ok- was going to look but went to meditate instead. I can see from ds's window and the engine had gone. Anyway,they were in good spirits,literally,having hit the whisky.

Pennies - Thank you so much for your very useful input on Taxol. I shall certainly be quizzing my onc about this, see what he thinks about the two-weekly idea. Think he has children himself so should be able to understand my concerns re the summer hols. Sounds like your friend had a tough time, rather worrying. I have a blood condition that makes my blood more likely to clot so this is a risk with the port for me. They are going to 'have a chat' with me about it when they fit it on Tuesday. Can I ask why you still have the port and why you have a love/hate relationship with it? Have not, of course, been told of any cons so far, only the pros! My onc told me they are not allowed to leave ports in in case people decide to start using it for heroin! (which sounds a rather far-fetched reason to me)

Kurri - Glad you are feeling a bit better already - the anxiety itself can cause so many physical symptoms which you can do without! Am a bit disappointed on your behalf you didn't get to go posh frock shopping, that's definately fun, especially for someone else!

MAS - Thanks for that link about Jeremy Bentham, fascinating! So glad your mum is home but I am intrigued to know what on earth your dad puts in his soup that requires having a rest after! Must be pretty heavy duty soup - or is it called Sherry Soup or some such?

Figgy - hope the painkillers are doing their job and you get a better night's sleep tonight.

Smee - if we didn't leave the loo lid up when we had our cat when I was a child, he would have been very thirsty. He could often be found sitting on the seat, head down the bowl

SR - Hope you are having a lovely Thai meal. Very and also of your kitten. DH is very allergic so I can't have one , although I have heard that after a couple of weeks of suffering the allergic person gets used to it.... Thank you for the kind offer of the wig but I am another brunette. Made me think tho, so many women must have redundant wigs at home, they cost such a lot of money, and you don't even know if you are going to 'get on' with one - what we need is a kind of 'wig swap/rehoming' service - wonder if such a thing exists? It could be another thing the breast clinics offer (if only they would offer any info on wigs in the first place). I bet lots of wigs are hardly worn at all. Also, congratulations to your DS on his uni-taster at UCL - he should have a blast!

Love and a good night's sleep to everyone xx

we have all got in the habit of putting the loo lid down as I know Celeste would be in there !

@ dad's soup - I think it's just vegetables , though they hit the whisky later on. They always rest in the afternoons now- I think I should as I always feel sleepiest then.
Have a good day everyone

MAS - Living with three males, I think it might be worth my while getting a cat then, if it means not only the lid but also the seat has a chance being left in the down position [sigh]

I shall go into Boots and do my 'chemo shopping' while DS2 is in his karate class today.

Hope Figgy and LGF had a good night xx

Might be worth checking out wigs on e-bay?

Thanks for tips re kitten-friendly house. Found myslef awake worrying about kitten last night eg will it destroy the home while we're at work because he's lonely/bored? Think will arrange for some friends to pop in during first month while he grows up and gets used to us. Could try and work at home occasionally but am v. busy with all sorts of staff breifings and meetings etc.

Celeste seems to sleep when we're out- just get lots of playthings and cover up vulnerable bits of furniture. We did go away after Christmas but friends came in to keep her company,which was lovely.

Just a quick update. I have found it hard to come in here since my parents have been staying! I feel ok, tired but ok. Very little signs of nausea, and when I have had them, I have just taken a tablet and been fine. The only other thing I have noticed is the taste change. My parents have been a great help, and I have had lots of rest but I can't help wondering if its making me feel more tired as I'm not doing anything? I sound really ungrateful now, don't I?

Ok, so I have got through the past few days ok. Can anyone tell me what happens over the next few weeks until next chemo? Will I feel worse? The nurse just seemed to focus on the first few days apart from telling me about day 10 plus when my immunity will be lower.

I hope everyone has had a good weekend? Figgy - I hope you have had a restful weekend? Sorry I never seem to get the chance to read all your posts :(

Hi LGF, Glad to hear you're resting and taking it easy. Make the most of it while your parents are there to ease the load.

I know exactly what you mean about resting TOO much though. I am resting for half an hour in the afternoon and lay down on the sofa to watch tv in the evening but feel exhausted in between times. I am going to go into work tomorrow morning (if I have a good night tonight). I only work 8.30 to 12.00 so will pace myself and see how I go. I reckon if I keep busy during the day I might be so knackered at night I'll sleep like a log. Last night I planned on taking a couple of paracetamol to get rid of the aches and pains but, when I took my temp, it was 36.7 which is a bit high for me, so I spent a lot of the night waking up and retaking it to make sure it hadn't risen. Silly me.

Days 7 to 14 are supposed to be when your immunity is lowest so I've stocked up on hand-gel and will avoid people with obvious germs.

I'm on Day 7 today and, apart from having a few aches and pains and feeling tired, don't feel too bad. I think I've got thrush (mouth and down below) so will get something tomorrow. I've also put together a little chemo caddy (it's a small bag for life) to keep with me around the house - medical card, letters and handouts from the hospital, notes, notebook, thermometer, lip balm, handcream and anything else I think of during the next couple of weeks.

Hubby and I went to town this morning and I've treated myself to a lovely nightie from M&S to snuggle up in in the evenings. Also had a coffee out too - first time in ages - and I could taste it which was lovely. Some things still taste really odd though.

When are mum and dad going back, LGF?

Figgy and LGF - I do feel for you as what you're describing is still very fresh in my mind really.

I found that I felt much better after day 9 - you'll just have to keep notes on your 1st cycles as you'll probably find the others are similar.

I was a bit paranoic about germs (as I'd had an infection after my first op I really didn't want any more). So I also had hand gel, and I was v. careful about washing fruit very thoroughly, and I Dettol-sprayed the kitchen a lot. (I never normally do this!) I wouldn't allow anyone with a cold near me, and I avoided crowded places. It was a bit fussy of me I guess, but it worked! I was particularly careful in days 7-14. Then I'd relax in the last week, which was when I felt almost normal.

I realise these things will be more challenging with small children.

If work tires you out too much, cut it back if you can afford to do so - you need your strength to deal with the next lot of chemo! Part of my whole approach was to conserve my energy when I could.

Pineapple is said to have enzymes in it which are good for your mouth. And I loved the taste.

My taste was very knocked though. It does improve in week 3.

Hugs to you both.

PS My DS has his fairly new girl-friend over for a visit this afternoon. After lunch DS was washing up, then he started to do some tidying. Finally my DH realised what was going on and said' Are you tidying up fpr girl-friend then?' and he was! isn't that sweet. Quite helpful - all 3 of us tidied up for an hour and the house does look better!

Lovely day here. Big blue skies and dazzling sun.

Figgy and LGF, I found by day 11 I started to get back to normal. The mouth problems build a bit, so it's worth keeping on top of them. In fact anything that feels not right, get onto straight away, as it's easier to stop things before they start. I didn't use hand gel and was lucky enough never to have an infection.

Slight word of warning and this isn't to scare you, as it wasn't a big deal for me, but I was neutropenic by cycle 2. It's common, but leaves you very vulnerable. I hadn't a clue I was so low, as I was keeping going and being stoic. Basically they take an informed guess as to how much of the drugs to give you, based on your weight and height. For most women it's fine, others like me it's far too much. My Onc said if your body reacts strongly to the drugs, it's akin to giving someone an overdose. They reduced the dose for my third treatment and my body reacted as they'd expect for that one, so I stabilised well. So just keep an eye on yourself and for once be a hypochondriac.

Hugs to your both. And to LJ - nearly your time. Hope you got your shopping done yesterday. Am sure you'll feel better once you start. Is it tomorrow??

MAS, your parents do sound lovely - whisky drinking after home made soup sounds like a sane way to be to me. Think you're wise to keep Celeste from the toilet. Our cat has fallen in before now, though thankfully into clean water. He's also fallen into DS's bath and likes sitting in the sink.

Wishing everyone a good start to the week.

SR - how exciting about the new kitten! I am quite jealous, despite having two cats, two dogs and several chickens....I would love another kitten - so ott on my part

MAS - fab news about your mum being home. I like the sound of your dad's soup. My dh's family all sleep after lunch. Even when they had small children to take care of the dc were told to be quiet whilst the adults slept !!! and back to reality!!!!!

LGF I know exactly what you mean about feeling worse sometimes after having rested. i think it is because you just keep yourself going, 'cos we have to, then when you finally do it really its you as to how tired you actually are. This time however, you really should try and take it easy and not keep going I think. Hope you are ok.

Figgy hope you are ok at work today.

My ds has taken his neosmart pad (mini laptop thingy) into to use in school today instead of having to write. He is so excited. Dd's fingertip literally exploded on sunday pm, pouring blood from where the splinter and infection had been, it now looks dark red at the tip.What is that all about. I thought she had cut her finger when she came running in to me, but no. She is so resiliant though she had a cuddle, and wet kitchen towel and five mins later she bounced out to carry on playing. tough cookie.

sparkle- yay for ds -sounds brilliant ! but eee @ dd's poor finger-what a brave girl though.
Am off to deliver books to school (agreed to give 28 copies to ds's tutor group and 2 for library) and post copies to smee,Cakes & KK.
Am going to see if I can book hairdressing appointment-and it seems a bit crass of me to mention having hair cut for vanity when lgf and lime are going to lose theirs out of neccessity - but it is driving me mad and I want to have the back cut shorter and more shaped,front long and layery- sounds awful but I hope it'll stop me faffing with it.
And I must work- am stuck on drawing animals,something I normally find easy.

MAS, thanks in advance for book.

And now you've mentioned hair, mine's driving me mad too. Quick question for those who've been through the whole cycle, but when it grew back, did you have chemo curl?? I do (it's quite fun actually) but some is growing back curly, some straight, so it's a bit of a dog's breakfast. How long did your curls last?

Sparkle, a big whoop for your DS. How fantastic to hear him being excited and up about life. Your DD's very brave. Hope finger's back to normal by tea time.

SR, forgot to say, but how sweet your DS clearing up for his girlfriend.

Hi - yikes - poor Sparkel DD's finger . Still, perhaps an explosion was what was required...

My hair felt a bit like poodle texture for a while - at least how I imagine poodles. ie quite wiry and a bit kinked! Its getting back to normal now- have just had it cut for the 2nd time and its relaxed I think. My treatment that made my hair fall out finished last June, but I was still on other chemo for 4 more months and that affected it too, just not so severely so it did start to grow back towards the end of that time ie October-ish but have to say its a bit of a blur now.

I let it grow till there was enough to cut IYKWIM.

Good luck with the animals MAS.

Wish RSPCA would hurry up as I need to drive to Cambridge.

Thanks SR - you're a couple of months ahead of me, so that's mighty reassuring. I am very much a poodle.

Meant to say before, but you were spot on about feeling energy had returned 3 months after treatment. I passed that marker last week and most days feel normal again.

Are the RSPCA bringing the kitten, doing the house check, or ringing you to say you have their approval to have the little chap? Ooo I am waiting on the edge of my seat, but have lost the plot (in both meaning of the phrase) as to where you are up to with kitten adoptionage.

Good evening! Well, I had a rubbish night sleep. I decided that I couldn't breath properly and there was no way I would sleep. I worked myself into a bit of a frenzy. DP eventually managed to calm me down and I probably got about 5 hours sleep. I also went into work which was tough but I took it easy. They said a I could do as little as I liked :)

I am also getting bad indigestion today? That is something I got really badly when I was pregnant. They gave me something for that too, so I have taken it. It has been a bit of a 'down' day for me but its probably because I'm tired. I am now in my PJ's and am going to bed very soon.

Figgy - did you manage to get into work today? If so, how was it? I have got a couple of those hand gels to keep in my handbag, car etc just in case. My mum and dad went back yesterday evening but are coming back this weekend as its DS1's birthday plus party and could do with some help. It was booked months ago and can't let him down.

Hi everyone. Smee, it's funny you should mention neutropenia because, when I went to the wig lady this afternoon, I popped into the chemo clinic and told them about my erratic temps last night (it went up to 37.6 and 37.7 and I ended up ringing the hospital ward for advice) They kept me in for observations. They took a blood test and my white count is very low (0.3) and the nurse warned me I might be neutropenic so I'm forewarned. I also got a prescription for flucozanole for the thrush.

LGF, sorry you're feeling down today and had a bad nights sleep. It can be very scary in the middle of the night when you're worrying about stuff. I did go into work and had a lovely morning. I didn't go flat out - read with a few of the children, worked with a couple of groups, did a bit of filing and took down a display - nothing too strenuous. It was lovely to be back but (and I don't mean to be ungrateful) but I wish people wouldn't want to know all the details.

Had trouble finding a wig I liked. I tried a short one and looked like a man so have plumped for a longish one with waves and will have the fringe chopped and maybe a few inches off the length.

Off to bed now. Thermometer at the ready.......