**Tamoxifen** the 30th thread !

[MaryAnnSingleton]

Am wheeling the trolley over....

Herrena - not implying you were being too forceful - I know it is very hard for families - DH always used to tell me he felt so helpless, he wanted to DO something, and gathering info and being on top of all the medical stuff is important for you, - its a tricky one getting the balance right - but hospital people will be used to all these dilemmas, so anything you want to do will be fine - if mum wants to go out of room while you ask questions - should be no problem. Don't let them rush you - take all the time yo need so you are both happy you've had your questions answered

I'm off to an art gallery today and lunch with a friend, have a good day everyone

That is probably not a bad thing gracie as more time to recover from rads. How is the itching?

oh my, an enormous box has arrived and I know it's from you lot (have opened lid and saw label saying so )Am about to delve in ! I cannot begin to express how touched I am by it...sob

Oooh, how exciting, MAS. Have fun opening it all.

Gig, what's the test the teacher's talking of?? Obviously she can hear, as you'd have realised if not, but is it about low level noise or something?

Lovely sunny autumnal day here. Quite like Autumn when it's like this.

Have fun with your box of tricks mas. Hope you enjoy.

gigs Does biggigs have a lot of ear infections? My middle son passed one hearing test but I pushed for another as I was convinced he couldn't hear. He needed vents and they made all the difference. Itching still itching but I got a little sleep last night.

Argh just got a call Herceptin is tomorrow so now having a little panic.

I love a bit of good news! YAY for Bernadette and Moss!

YAY too for parcels - enjoy delving MAS you deserve it so much, and we luffs you x x

Just been for sunny walk with dogs. Small Ninja dog unimpressed at being hauled over a gate by her collar. . . it was either that or I got very wet feet!

Thoughts are with herenna and her DM today. Thinking of you lots, love x x

smee how's the work going? Any sign of the pressures easing?

gracie I was a bit of a wreck after rads finished, so its fine to feel down in the dumps. You are welcome to be my itching buddy

kurri what news on your mum's house? Any joy with a lovely buyer? IS there pressure to get her place sold so she can move, or will they wait for her, iyswim? Hope art gallery and lunch fun - might you get some inspiration for your own painting?

gig I am getting DSs ears checked again - he passed the test fine in reception, but he says sometimes he can't hear what his teacher is saying but I know his classroom is quite noisy from what I have heard from parent volunteers. . . School nurse going to see him when she comes in at start of December. Might it be worth contacting your school nurse, see if she can take another look at DD? Sorry, you may have said that already and I missed it

Hope everyone has nice plans for today - I am having a quiet one today - much TV crap recorded to catch up on! Lots of love to everyone x x x x x x

gracie - lots of luck with herceptin tomorrow xxxx
Thank you so so so much for the totally brilliant 'Mumsnet Parcel of Love' (that's what ned's dh calls it !) I am touched beyond anything at how thoughtful and kind you are and feel very overwhelmed - I cannot tell you how much you lot mean to me - much love and kisses to you all xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

MAS you more than deserve it all. We wouldn't all have met without you.

Ned, how's your itching today?? Is it getting any better?

Gracie, that's a shock on the Herceptin, but maybe it's best to get on and start than have it hanging over you. Kurri might have some tips. Bet she will.

MAS so glad you received your parcel-enjoy it with all our love xx

Am so pleased you like itmas

gracie she doesn't particularly suffer with ear infections but has been unwell (which can affect it). I am not sure what they test for but think it could be low/high frequency noise. Mad nanny said she thought edie couldn't hear but it's not something anyone else has noticed so we put it down to fact mad nanny talked so much she didn't listen. My dad shares your view smee that its unlikely a serious issue.

What a lovely bunch of people. I hope there is an award for thoughtfulness on Mumsnet, you all deserve it, and Mas you deserve to be recognised. Wish there was an emoticon for [touched]

Gigs we had No 2 DD's hearing tested several times at the schools' instigation, I actually hoped that was an explanation. However her hearing is fine, it is her aural memory that is the problem, at the 10th percentile. It wasn't so much that she wasn't hearing instructions etc. as she was forgetting them as soon as she heard them. I don't know if this sounds like something you should check out.

gracie good luck with the Herceptin. I had a few friends who fought to get Herceptin eleven years ago but were unable to, even privately, because the research wasn't yet in on it's use for early Breast Cancer. They were left after chemo with no more treatment and what my friend termed as a prognosis "that just isn't good enough". They found it really hard and struggled to cope with feeling left high and dry, whilst all us hormonal wrecks were tamoxifening. I have met a few people who went on to Herceptin since and I always feel really happy for them that they are getting that chance now.

Really glad you like your parcel mas you really do deserve it, lovely thoughtful person that you are .

copthall Although I'm anxious about the Herceptin I am really glad that I can have it. I remember it being very much a postcode thing years ago, I'm not sure if that is still the case. My chemo nurse told me Herceptin is totally funded by the drug company in NI and all NI patients have it at home which is good. I am Tamoxifening as well - greedy guts that I am.

Just back from walking the dog. He is curled up in bed snoozing now and I'm off to do the school run. DD still struggling a bit we had tears this morning again as she kept asking who was collecting her

I remember my sister in law having to really fight for Herceptin- this was 7 years ago - she went to the newspapers too ! We all started trying to raise money to pay for it but in the end her PCT decided she could have it which was brilliant.
Am feeling queasy which isn't v nice -am going to pick up my prescription shortly (have about 5 tablets of domperidone left) Might be anxiety about going away tomorrow- quite frankly I'd rather nestle here than face a journey up the M1 - but I know I'd feel mightily guilty if I didn't go.

mas my chemo made me hugely queasy, lost a lot of weight. I am sure you have seen all the standard tips on eating but the one thing I could cope with was Miso soup. I like the Yutaka brand they do at Tesco.

gracie Estrogen and Her 2 Neu positive? the b**r doesn't stand a chance!!

Listen to Copthall, Gracie. She's clearly v. wise.

MAS, not surprised you don't want to go. Do you think you'll be okay in the car??

dh has asked me whether I'm up to 5 hours in the car (it's going to be at rush hour hence the long journey,plus a stop for supper at Watford Gap) Quite frankly I am not relishing the journey.. will see what's what tomorrow I guess.

Meant to say before - mum had her sister on the phone and told me that Auntie seems to be very competitive when it comes to medicines and wanted dad to tell her exactly what mum was on so she could compare - honestly- it made us laugh -she loves her illnesses and the tellings of (aunty,not mum- poor mum takes no delight in her Parkinsons and rheumatism and arthritis- it's like Top
Trumps with her sis. She is nice though - her visits to the doc or the hospital are her social life.

Yes copthall I am such a greedy guts I have to be triple positive .

Don't envy your long journey mas. To be honest I just couldn't have managed that whilst on chemo. Don't push yourself if you really aren't up to it.

Just wondering if anyone has read 'Anti Cancer A New Way of Life'. I ordered it off Amazon as I really need to sort out my awful eating habits. I have had a quick glance through and it seems quite sensible. Will report back when I get around to reading it.

Evening all.

Just popping in quickly before my tea, to say Hooray that your Parcel of Love arrived MAS - enjoy delving darling - we all love you dearly xx

Had a lovely Day at the art gallery (it was the Sainsbury Centre in Norwich) - lots of interesting modern art, and a photography exhibition called John Hedgecoe and The Writers - which was interesting - portraits of famous writers. But I always find I really like some of JH's work and some of it I think is not well composed, then he'll surprise you with something very brilliant.

Anyway - off to drink a gallon of tea, and catch up on all your posts.

gracie TRIPLE! progesterone as well? or do they test for something else now. Anyway you can give it a triple whammy then, ABSOLUTELY no chance!!

I shall take a look at that book, I need to reinvigorate my diet, or rather my willpower. I started out well but of late have got rather rebellious / resentful of it all. Since I got the diagnosis of low bone density diet coke has become my guilty pleasure, never really liked it before, was banned in the house when DDs were children, so the only possible explanation is a desire to rebel against it all, diet coke managing to be carcinogenic AND bone leaching!

I bought every book in sight when first diagnosed but got a bit fed up of all the preaching, is that Jane Plant woman still around saying you will die if you eat a cheese sandwich? However the one I did really embrace was www.amazon.co.uk/Breast-Cancer-Prevention-Recovery-Diet/dp/0140283951 She just presents you with the evidence and lets you make up your own mind which I like, and it chimed with what my nutritionist was saying (now half my friends have requalified as nutritionists so I don't have to pay ). Thankfully one of the supplements she evidences as having benefit is Calcium which I took from the start. It may be out of date now though presumably she would have updated it.

What she writes about hormones and estrogen overload definitely struck a chord with me, so it was useful to know what you could do about it. I had all the signs, heavy periods, cervical cancer in situ, fertility problems linked to high Estrogen levels (but of course they never told me that put me at risk of anything else) and I was on a very high dose Estrogen pill when I was in my 20s, I understand there is talk of a class action in the US where they are picking up on high levels of BC in those taking that specific pill (it's still available ). My Oncy believes that the link between exposure to hormones, whether in drugs or environmentally will eventually emerge as accounting for more of risk than they understand now. It's a bit of a hobby horse so I'll dismount now

mas I know that journey on a Friday (and the Watford Gap ), did it a couple of weeks ago and doing it again in a couple of weeks. It's horrible at the best of times, at least the weather forecast is good. God speed anyway.

Gracie I meant it has no chance obviously

ah,diet coke, actually Pepsi Max is one of my pleasures, you can get mini cans and they are very good at perking one up.
Am not sure about going,but will decide tomorrow- dh has booked v nice restaurant for lunch on Saturday so that's an incentive

Hiya, just wanted to let you know how it went today. DM and I saw the BCN, then the medical oncologist, then the chemo nurse. General chat with the BCN, then the medical oncologist said we'd start chemo next week (!!), then the chemo nurse took us through the details of that.

So far so good, except for a couple of points. My DM said to each of the people mentioned that she 'just wished someone would tell her it's all going to be fine' and then waited expectantly. Since they all very carefully didn't answer that one, she was then convinced that she must be beyond hope. I had to keep telling her that they simply CAN'T tell anyone they are going to be fine, partly because they don't know it to be so but also because they would surely at some point be sued. She seems to have finally accepted that point but we shall see what tomorrow brings.

Also, the chemo nurse was very brisk about scheduling the chemo and used the unfortunate phrase 'we've got to treat this as soon as possible'. That didn't help. I tried to explain that the nurse simply meant it's best to get going with treatment if you can and that she would have the same attitude towards ANY patient, but it took several repetitions.

I think it's as a few of you have said; she's only hearing negative words at this point. I'm trying to provide a balanced perspective but I'm worried that I'm feeding her false hope too.

Anyway. ECG next week followed (very rapidly) by start of chemo, so it's all progress. Thanks to you lot for the advice; I asked for (and got!) the path report, which is good to have.

Herrena - I think it's good they are starting her on her chemo soon - no reason not to get it underway, and she will feel she is moving forwards.
I'm sorry I can't remember if she has had surgery, or is having chemo first (different hospitals seem to take different approaches - both equally successful as far as I can tell) - if the latter, have they said when they are likely to do her surgery?

I think wanting someone to say 'it will all be fine' is very normal, - we've all wanted that! - but BC is the one where they never say that (and I sure some other cancers too) - the treatment is a long haul, and you sort of have to get used to there being no quick answers or reassurances.

But I certainly don't think you are offering her false hope, - IIRC they think her lymph nodes are clear, - which is excellent, but even if it has reached the nodes - that's really what lymph nodes are there for - to catch the rubbish before and stop it getting into your system.

But at the start it is very very hard not to be negative, it is such a shock, and so frightening, it will be constantly in her mind, and everything that the professionals say to her, she will be thinking over and interpreting and worrying about.

So if you can offer her lots of reassurance, she may gradually start to relax a little bit. And honestly once treatment starts, you do begin to feel a bit better (mentally I mean - obviously physically you feel a bit pants!) you feel as if something is being done, and you get into a sort of hospital and treatment routine, and there is reassurance in seeing medical people regularly.
And I used to find my BCN was very good at calming me down when medical people said somewhat tactless things, and explaining things.

If your mum does find she's struggling with the emotional side of things (and I found that much harder to cope with than the physical stuff) she should talk to her BCN or her onc team. there is help available - counselling, relaxation, or even medication if she feels she needs help.

Apologies for another long essay - there is so much in what you say about you mum that reminds me of how I felt. Cancer is an utterly shit thing to happen to anyone, and I felt so bewildered and scared at the beginning, so I have enormous sympathy for your mum, - I wish her all the very best in her treatment, and hope she starts to feel a little less lost and anxious once her treatment gets going

Excellent reply from KK - can't think of anything to add - but well done for getting through today and loads of good wishes to your mum