**T*A*M*O*X*I*F*E*N 11 **

[MaryAnnSingleton]

new thread here !

poor dad KK The brother of SIL in Oslo has reported back on facebook about what it's like there- flags at half mast etc -awful.
Glad you had a lovely outing amber !
We're having supper with mum and dad- dad is a very sociable person and said he wanted us to come over for a take away and wanted to ask the lovely friend from opposite (whose wife died earlier in the year,if you remember) so that's what we'll do. Dad does go up to London quite often to see his best pal and have lunch with him- it's very sweet.
Anyway,must get back to sorting my drawings,then ironing.

That sounds a lovely evening MAS

There is a thread here someone asking for advice on hosting a Strawberry Tea, - I said I'd point you in her direction, hope you don't mind

Hi, hope it's ok to come on here and chat about my Mum.
I'm really worrying about the news we had last week and wishing I'd asked more questions at the time. I know there won't be any sure answers, just keep thinking about what the consultant said when my Mum asked if the cancer could have spread. He said that there would be mo point in doing whole body scans or bone scans at this point as it would just worry her more. What does that mean? Also the fact that the Timor was so big 50mm and there were no clear margins. I'm going to try ringing his secretary on Monday again. Will she get the pathology report through the post? Thanks

framey - I so sorry your mum is going through this. I can only tell you what I know from my experience. Has your mum had her surgery? In my experience they find out from surgery if it has spread to the lymph nodes, if it has then they will do whole body and bone scans. I think the consultant was unhelpful in his remark as it has obviously worried you all more, but that is the normal procedure.

She won't get path. results through the post, your consultant will call her in to tell her whether it is good news or bad, so don't read anything into an appointment letter.

Some people actually start treatment if its chemo, before getting scan results.

Has your mum been assigned a Breast Care Nurse? - In my experience they are invaluable for explaining things, getting things moving if you encounter any delays in results etc., and generally just chatting with you if you feel down. They are usually perfectly happy to talk to and explain procedures and protocol to family members too. IME much more approachable than surgeons (who also IME can say very tactless and worrying things) Oncologists usually better at giving you details.

Its very hard to remember what you want to ask in the stress of an appointment, I found writing my questions down beforehand and taking in a list helped.

It's great you are able to go with her - it really helps as support and as a second pair of ears at consultations.

I wish your mum all the best for her treatment and recovery, and of course you are very welcome here - between us we've had most treatments going, so there's generally someone who can help. Also if your mum is an internet user, se would of course be very welcome too

Thanks Kurri, she had lumpectomy 2 weeks ago plus lymphs out. 1/8 has cancer. She's going back for mastectomy next Sunday/Monday.
So we had an appointment to discuss her results with consultant but I'm not clear on a few things. Was wondering if they put it all in writing after the appointment or whether this is something you can request.
Also don't understand why they thought the tumor was 19mm now they say 50mm? That's a big difference.
List my Dad to heart attack 10 years ago so I'm not taking this well. Mum is very upbeat and brave and still smiling ad always.

I'm sorry Framey - you've had a really tough time. If its any comfort I had a large tumour, mastectomy and 2/8 lymph nodes affected, had chemo, radiotherapy, herceptin and am now on tamoxifen, - they need to establish exactly what type of breast cancer it is so they can tailor her treatment.

The problem is all these surgeries, tests etc. take time, and I know how stressful the waiting is. Do phone the BCN next week and see if she can clarify things for you, - I see no reason why your mum shouldn't be allowed to see her notes if she wants to, and also if you don't understand anything ask her consultant to write it down.

I don't know about the discrepancy in size but the BCN might be able to explain that. Its a real pain that she's had to have two surgeries, but I think its fairly common - happened to me too. I think they try to be conservative then find they have to be a bit more radical to make sure they've completely removed the tumour and any nodes affected.

I hope your mum gets clearer information after her mastectomy, it is a stressful time, - there's no easy way round it, but things do tend to get easier to cope with once you know all the info. and have a treatment plan., and you've had a bit more time to accustom yourself to the shock of a cancer diagnosis.

hey framey- glad you found us- KK's advice is excellent,can't add anything else- just my good thoughts to you and your mum.
KK - am off to look at the strawberry tea post.
Supper last night was lovely- rather too much food ordered- lovely friend of parents enjoyed himself too. Actually he is only a few years older than me ! He seems to really get on well with my olds.

Hello Framey, sorry to hear about your mum. Like others on here I have had treatment for BC. Its hard but I do suggest you try to deal with each step one at a time as in my experience you just don't get all the info you want in the same go. Its little stpes one at a time as the investigatiosn contonie and treatment gets going. You're in the hardest phase at the moment when everything is unclear - once your mum has a treatment plan I think you'll find things easier.

You tend not to get the stuff written donw -= good idea to write down your questions and take a pen and paper with you when you see the consultant (if you're with her).

BC nurse is a key contact, as KK said. I also found it helpful to have the surgeon's PAs' number in case you're desperate for a bit of urgent info.

I had a few affected lymph nodes so had to have them all removed in a second op after I'd started chemo.

How old is your mum? I'm 56 and although the treatment is not a walk in the park its doable, and with your support I'm sure she'll do well. (I had 3 ops [though all failry small, no mastectomy] chemo and radiotherapy) Try not to think the worst - just assess each new bit of info and don't google as its unneccessarily scary. This thread and the BC nurse will be a good support for you and your mum.

This BC is very common now as you probably know, and treatment is very effective for lots of women.

Thanks everyone, the advice about taking things a step at a time is very good. (i will try) Just back from work now and feeling more positive.
I seem to really worry in the mornings for some reason then I get over it as the day continues and I get on with work and the kids.

I want to do the best I can for her but it's frustrating that I cant make it go away. :(

Morning all , and morning framey and welcome .

Got my pre asessment at 11.20 today . Hopefully get the results of my bone scan too . To say I am shitting myself would be putting it mildly .
Am fed up of going for appointments and getting bad news every time

On the up side , it's DS 12th birthday today .
I over heard him talking to his sister yesterday , she was asking him what he wanted for his birthday . He replied that it didn't matter because what he wanted was too expensive because mummy isn't working any more .
And also he was sad because we were at a family party for his Granny yesterday and no one remembered that it was his birthday today .

When he got up this morning and found cards from all the family and opened his present from us (the laptop we had promised him for going to big school !) he was overjoyed !

Hope you all have a lovely Monday , will report back from the hospital later .

topsy- bless your ds -what a love-am that his birthday wasn't mentioned yesterday though
Loads of good thoughts for today - really hope all is well-thinking of you x

Happy 12th birthday to your DS Topsy, and I hope everything goes well for you at hospital today.

Hi Mary and anyone else about.

Amber did you used to post on the ASD threads on here? I'm sure you've given me advice about DD in the past, just after she was diagnosed with Asperger's. Sorry if I am mixing you up with someone else.

We have a bit of a rubbish day today as DD has caught my cold, so she's feeling grotty. I also didn't plan my nursing duties very well and have run out of heparin, that I need for doing DDs cytarabine injections, so poor district nurse has to drag out to our house in order to bring me some. Am . Saying that, she will do a full blood count too as DD is getting a rather fetching platelet rash on her chest, which means that she might need a transfusion. I want to check before we pack up and run away for a few days. We are going to my Mum's; I am sick of the sight of our house.

Just a quicky as we are heading to Grannys to get the dc for a birthday lunch .

But .................... bone scan all clear !!!!!!!!!!!

I am so bloody happy !!!!!

That's great news! Have a brilliant birthday lunch; I'm sure you will!

MarianH, yup, that'll be me on the special needs boards. Hope they manage to get a quick answer about your DD's bloods...and hope you get a decent break at your Mum's too.

Topsy, happy 12th for your ds!! And yipppeeee re bone scan!!!!

hooray for you topsy !! brilliant news !!

aw- ds got his Celebration of Success award for his contribution to music,drama or arts - yay ! No singing exam results yet though.

topsy, - I was out all day, but thinking of you -, hooray! so pleased you had good news

And happy birthday to your DS - he must have been chuffed to bits with his laptop

Marian sorry your DD is feeling a bit grotty at the moment, hope things get sorted out and you are able to have a nice break at your mum's.

Well done to your DS MAS, - what a star - hope the exam results come through soon.

Hope you have been feeling OK today amber, and everyone else having treatment atm.

I had yoga this morning, and when I'd finished I went to the loo to get changed, and when I came out, everyone had left and I'd got locked in and I wandered all round the inside of the building and eventually found a door that wasn't locked at the back, and got out. There was a workman in one of the outbuildings, and when I told him I'd got locked in, he fell about laughing

Then i met up with DD, DS and his DP and we all had lunch. I got paid for my bit of work for him, and treated myself to some pastels and charcoals and an art book. (I've started going to an art class on thursdays, - basically you just turn up and draw/paint whatever you like, and natter and drink tea )

YEAY AND TRIPLE YEAY for Topsy!!! Been thinking of you today, and that's fantastic news. Am so pleased for you. Tell us more when you're back from granny's.

Sorry I've been awol. Went to my parents' and their broadband was down. Will read and catch up tomorrow, but just quickly remembered I'd failed to put suggestions for SR, so SR if you're still looking for London things for 17 year old to do, Greenwich is pretty good if he's into science - Planetarium's fantastic if he's not been somewhere similar before. Wellcome Museum's good for science too (good cafe!). Guitar wise let him meander up and down Denmark Street and salivate in the shop windows. Camden Market, if he's even vaguely into clothes. For shows, it's nigh on impossible not to like 'Stomp' - I've taken a few teenagers to that and they all loved it (as do I!) War Horse is just fantastic; moving and a visual feast. Billy Elliot might be fun, or strange choice this, but 'The Woman In Black' is terrifically old fashioned and genuinely scary ghost story. A friend took her 17 year old boy recently and he thought it amazing.

Right, have to go as DH back from his cycling trip tonight and I want to cook something lovely, though I failed to shop so it will be a challenge. Will catch up tomorrow. x

Hello Smee, hope you had a good time at your parents - how is your mum getting on?.
Just seconding your suggestion of The Woman in Black - my two went to see it when DD was 16 and DS a bit older - they loved it, and were really scared (and told me I'd better not see it because I'm too much of a wimp )

Topsy - I am delighted your bone scans were clear - excellent news!

Smee - thank you so much for your L0ondon suggestions. Our trip has extended itself a bit as we wanted to go to a Prom and can't get in till Tuesday so we'll be in town for a few days which is great! We're saving money this year and not going abroad and we'll be staying with a friend so this means we can afford to go to a couple of shows.

A lady is going to show DS round Imperial too, which is good, except I cannot imagine how any student survives there unless they have very wealthy parents!

Hope everyone is OK.

Had nice massage etc at osteopath today and my back is slowly improving. She's very direct - said I looked a little older due to my treatment and asked if I'd put on weight since I'd seen her 18 months ago. I explained my weight had see-sawed during chemo but I'd lost over a stone this year. She looked a bit doubtful and said 'Its a question of tone then isn't it.' This was with me almost naked in front of full-length mirror. I don't think tone is really the issue - its just fat! Sorry to say I don't think my body has ever been toned in its life. I came home and ate 2 slices of fruit tart, a piece of squash cake and a little choc tartlet (all left from DD's brithday tea yesterday) Seem to have dropped right out of my regime groove - a few weeks ago.

I'm glad to have 2 weeks off work coming up.At least my back is improving.

poor KK getting locked in - that kind of thing happens to me..but glad you escaped and had your lunch (and bought nice art things- always joyful !)
Which Prom are you going to SR ? We used to go a lot when we lived in London. I am not sure I like very direct people -I tend to ruminate on things said and would fester over anything like that. Am glad back is improving.
Marion- do hope dd feels less grotty v soon,poor love.
Smee- was thinking that your dh must be returning soon- what did you make for him ?

SR, it's good your back's improving, but that Osteo sounds a bit harsh. Am not surprised you fell into cake. I vote for the Duck trip too - we did it in Liverpool and it's great fun. Had another thought, but Churchill's Bunker's good, as is Imperial War Museum which is free and has yet another good cafe! When are you leaving? If I have any more thoughts, I'll post.

Marion, I hope your dd's feeling better and you're having a better day.

Hello Framey. Hope your mum's feeling okay today. Others have given good advice, so I won't add to it, but if she's got any questions about mastectomy let us know. I had one removed last April and will be having the other removed in September, so will need to try and remember how it felt before then. You never know, I might end up asking your mum questions!

MAS, hooray for DS's prize. What did he win? Was it something tangible, or just a certificate? What are summer holidays like with a teenage boy? Tell me my future.

Topsy, how are you today?? Is next chemo tomorrow?

Amber, hope you're feeling okay too and Sparkle, sorry about the chicks.

at Kurri, getting locked in. Sad tale about your father though. Must be very hard for your mother to keep him calm. My mother's still early stages, which is good. I get glimpses of how it will be as she's very forgetful, but so far she muddles through.

MAS, I made DH one of our favourites, so a salad of grilled haloumi, sunblush tomatoes, chick peas, coriander and other nice things. We're lucky as there's a Turkish supermarket a few minutes walk away, so I nipped out and got things. v.lovely to have him back.

Must be lovely to have him back Smee, - did he enjoy his trip? And the supper sounds very yummy. I'm glad your mum is managing - my dad was in the early stages for several years and managed fairly well, this deterioration is relatively recent.

SR - I'm not surprised you needed cake - those were very harsh comments, - don't let them discourage you though, you're doing really will, there's bound to be the odd blip with family celebrations, friends staying etc.

OK - Can I just have a slight panic? The doctor phoned me this morning, my thyroid is still over active even though I'm not taking any thyroxine. And I have been feeling a bit off recently (I mentioned the excessive sweating I think). So he said he's going to refer me to the hospital so they can do more extensive tests and scans.

And he wants me to come in to see him so he can 'check for any lumps and bumps' on my thyroid, check my heartrate etc.
I have foolishly googled thyroid changing from under to overactive I am sticking my fingers in my ears and going 'lalalalala' at the moment.

Have to say one of the symptoms of overactive thyroid, losing weight, seems to have passed me by completely