**TAMOXIFEN 18**

[MaryAnnSingleton]

oh my,we're starting our 18th !

Yep, picture (and stickers here). Lovely

Holstein - Hope you are coping with the pain, Topsy and I want to know what drugs have you got what painkillers were you sent home with?

Those pics sound great, MAS.

Figgy, sorry to hear you're a bit down. Not all that surprised, as you've really been through it. Definitely call the BCN.

Holsten. to hear you're home. Tell us more when you can.

Topsy, good to hear you're feeling better then. Hope the bath lives up to expectations.

Amber, with the peripheral neuropathy, how are you affected? Is it hands and feet mostly?

Sometimes and BackforGood, am envious of your new things!! How do you get your DH to agree on anything? We are still poles apart on a new sofa. We wanted to get one in the sales, but I just know it will go on for years...

Waving to all others. Am supposed to be working. Very hard to work on a Saturday, but I have a deadline to meet. Think I'll get there and a glass of wine tonight might help.

ask sometimes for some of her new wine smee ! Am working too,ish, trying to think of new ideas..feel really sleepy though. Dh ordered a little mini pine chest of drawers for me to put my bits and pieces in (the bits of jewellery and tut which litter my chest of drawers and which he frequently hoovers up accidentally) He has painted it too - bless !

Hi all! all round, I think. And some choc suggestives for those who have some time to go before dinner.

Smee, yes, not so noticeable in the feet, but my fingers have that sort of numb tingly feeling you get if you're wearing gloves on a freezing cold day and they're not working properly. Can't feel heat and cold properly now so having to be very careful. Real dilemma as I'm on 5 out of 18 herceptins, but the figure of 18 was a random one guessed at by the drugs manufacturer with no research to support it. Research not out until next year at the earliest really. One study says that a short course is as effective, but that was done with chemo at the time too, so not the same thing. No-one knows if there is more risk from stopping now or not. Even if I do the full 18, the NHS Predict calculator only says it's an extra 1.8% chance for me. But risks from falling over and getting more disabled than I am now are tricky. I want to do my best for myself and everyone else, but what on earth is 'my best' in this situation? That's why I'm hoping for more research pronto, really. No answers, but interesting questions.

Hi amberlight - I'm sorry about the bother you are having re the neuropathy/herceptin. It's a fine calculation isn't it, to weigh up the benefits vs the side effects that can reduce quality of life? My experience is that the Oncologist showed me all the various calculations, including chemo, but the benefit for me was 1-2 %. I could have taken it up for that slight margin. I asked him are you recommending chemo? and he said no....

Amber, that's a tricky one. Always a sod when things aren't clear cut. What's the likelihood of long term problems if you carry on? Does sound very worrying, not to mention debilitating.

oh it is a bit of a headache for you amber - wish things weren't so vague.

Smee, again, there's no research to say whether the numbness etc ever goes, so it might be permanent, or not. ThinkI'll have a , since in real life it's

sounds essential, Amber. What does your Consultant think? I know it's not an exact science, but they must have a guesstimate in terms of likely long term? Have they done any tests on you like EMG?

Oh Amber numb fingers are horrible. I can see why you might decide to stop if the benefits are marginal.

Just noticed Topsys query about the breadmaker. It's a panasonic, not the most expensive but still almost £100. I took advice from the ladies at my knitting group - I wasn't actually thinking of spending quite so much. I had some vouchers which I put towards it so it didn't seem so bad! Told my brother about it earlier (he used to be a baker at the town bakery where he lives) and he was a bit sniffy and said he just makes 3 loaves by hand on a Saturday to last the week...

Managed to unhide this thread. Must have hidden it by accident a couple of days ago ...

Smee, my consultant is totally honest and say there is no guidance available from anyone. It's up to me to know how difficult it's becoming.
Jchoc, yup, because I already have arthritis and autism and dyspraxia which means I'm already stiff and clumsy, and I've already fallen over very heavily and damaged my knee recently...so quality of life becomes v important. If I've done a third of herceptin, and it only adds 1.8% extra chance, then I'm only about 1% off the best chance possible, I reckon. But I'm no scientist, just an amateur with google and a lot of hospital work background.

Well at least your Consultant's being honest, though it's not much use!

Evening everyone, I'm feeling vaguely human ! Pain has been unbelievable. Quick rundown on my op, hope its not tmi. I had vulvectomy and excision of groin nodes. So the pain is both groins and undercarriage. Got paracetamol and ibuprofen. If no better I will get on to gp on Monday. So hard cos I can't sit for long nor lie on front , walking feels like I'm going to rip all the stitches. But, I have been very well looked after. I'm on my own now and bathing in a shallow bath seems to help. I'm sure it'll get better. Just got to cope with my period now (yeah great timing!) Thanks for all messages x

Holstenlips - Oh your poor thing, consider yourself gently hugged and tucked up in bed! Sounds very painful, don't hesitate to present yourself at the GP surgery is my advice, or have a moan/rant here. Best wishes.

Figgy hugs to you . Your scar still isn't healing ? That's not right . I would definitely speak to your BC nurse , infact I would probably kick off a bit of a stink . But I am a bit of an arsey cow sometimes

Hosten I think you need to call your out of hours GP . That is not enough pain relief for what you have been through ! I remember the buggers sent me home from hospital after mastectomy and node clearence with nothing at all in the way of pain relief . And all the wanted to give people in hospital was paracetamol . I went straight from hospital to my GP and got a large script for codeine . Seriously , you don't need to put up with pain like that . And sorry for ranting , I am just getting a bit angry on your behalf !

Just eaten a KitKat chunky , orange flavour . Was very nice , I fully endorse this product ...

ow holsten - I can only imagine how uncomfortable that must be for you and painful too- hope you get some stronger pain relief asap.

holston I agree with all the others - there are so many different pain reliefs they can give you. There's no need to put up with that. My hosp. sent me home with several days worth, if yours didn't, then you shouldn't have any qualms about getting the out of hours GP to prescribe you something stronger.
smee - re 'new things'. I do all the research, then casually say to dh "I've seen a carpet that would suit the stairs, do you want to come and choose a colour or shall I just go ahead?" This time he did actually come, but more often than not he just says to go ahead relieved he doesn't have to go shopping. He knows I'm tight careful at the best of times, so wouldn't be spending rashly on something we couldn't afford. I tend to deal with the household budgeting anyway, so, once again, he knows that it's been saved for by the time I'm ready to buy.
Read a snippet in a paper today (well, I say 'paper', it was actually The Sun, but my excuse was I was waiting for my order in the Chinese Takeaway and that's all there was to read) which said eating lots of chocolate reduces your chances of getting bowel cancer. That's one bit of research I'm prepared to endorse!

Morning all! I'll put a on, help yourselves. I'm going to go for a quick swim instead of having a shower at home. Good exercise, and we are on a water meter so it saves money too!

jane sensible girl !

Morning, have lots of homemade flapjacks here if anyone would like some , I can't stop eating them. I slept pretty well after half a bottle red. Pain still constant but I'm coping better. I have bouts of feeling very upset, does this get better in time? I hardly recognise myself anymore, this has changed me. Have a good Sunday all x

Oh, and I found a box of codeine lurking in my med cabinet which they must have given me after my last excision. It seems pretty random how they give u pain meds, this was a much larger op and I can't understand how they think paracetamol.will touch it? Anyway, at least I have the codeine now although last time I took one I vomited so will only use if desperate.

Morning all, - Holsten glad you are home and the op is done, but sorry you are is so much pain. The pain relief you've been given sounds mad - can you ring OOH doctor and get a prescription for something stronger? or maybe your ward on the hospital (is there someone around who could pick you up a prescript?) The codeine will help if you can keep it down - but will also make you bit constipated, (You probably know this from last time! - but wouldn't want anything to add to your pain by not mentioning!) - so plenty of fluid and fibrous stuff.

In the past I've found with big ops. that you feel like absolute hell, then after a few days you wake up and can suddenly feel an improvement, - you feel slightly human again - so hopefully the corner turning will happen for you soon. But really don't let severe pain go on, get someone to check it for you - district nurse should come out if you request it.

Tearfulness, feeling deeply upset and down - all very very normal. I definitely went through that after my mastectomy - kept thinking 'how has all this happened to me' there's a sense of disbelief, anger sorrow for how things have changed and so many more emotions. It is a big deal what has happened to you - you are entitled to feel all over the place, and no shame in having a good cry if that's what you feel like - but you will come through the other side, once you start healing physically and are not in pain, things will feel more manageable. much love - we're all thinking of you - cancer is such a bastard - as if it needs saying!

waving to everyone else - my eye has swollen up in a very attractive manner, - no idea why, and it is constantly watering, so can hardly see to type. Will call in at the walk in centre tomorrow if I still look like Quasimodo.

Hope everyone is having a good weekend, - hugs to Figgy, its been a very tough year for you in all sorts of ways - it's bound to catch up with every so often.

And to amber - tough decisions - regarding the herceptin, but you are absolutely right about the 18 being a pretty random figure that's been arrived at. It's not a magic number. Hope you arrive at a compromise you are comfortable with

Thanks all for lovely comments re. Dad - he was all the things you have said,
fiercely intelligent, funny, warm, kind, -the person you could always turn to - the very best, I loved him so much.

Morning All

Holsten it is perfectly natural to have a post surgery dip . I thought it felt a bit like the post baby blues that kicked in for me about 2/3 post birth . Same thing happened for me post mx . Be kind to yourself and let others be kind to you too .
You really need to get better pain relief sorted though . This is absolutely what out of hours doctors are there for .
If it makes you feel better , I will relieve of some of those flapjacks ...

Morning to you too Quasi Have you tried some piriton or summat similar ? Might take the swelling down a little .

Off to Grannys shortly . And for the first time in nearly a month , I shall be wearing a bra and Bobby the (soft) Booby !!!
Tiny Boons people

Have a great day everyone x