TAMOXIFEN 9 *********

[MaryAnnSingleton]

Starts here !

Sorry haven't read any threads but had to just share with you what has happened, and vent a little.

I had an emailed copy of the letter sent by the CXO of LA for MP re my complaint. In it the CXO has either inadvertantly or deliberately lied about everything, much of which I have written evidence for, and refused to move ds to a dda compliant school. When I say lied I really mean lied, lied about timescales, lied about what they have done, lied about what suppprt ds gets, lied about me and ds, made statements about ds medical needs which are contrary to medical advice, lied about everything....to a member of parliament. I have spent the last four hours drafting a complaint, with supporting evidence to prove the truth, I have told CXO PA that I will be at the council house on Monday waiting to talk to him personally, I have contacted the Chair of Governors of school, who supports what I am saying including school failing ds, and I will be contacting the press on Monday if they don't let me see him. I am livid, I am devastated, I am so upset. They are all lying, self serving bstards who are quite prepare to sacrifice a 7 yr old to cover their backs. He is 7, he has got a shitty life, he may die anytime any day, and they have no moral fibre at all. I will call them out.

Ok vent a lot. Sorry, but this is not a society I want to be a part of.

Oh Sparkle - I can't suggest anything because you are doing all the right things.

What utter utter bastards.

I hope you get to see the CXO on Monday, and if not - yes go to the press - you and DS have been treated so appallingly.

lots of hugs, vent away if it helps.

xxxx

you are doing the right things sparkle-agree with KK - am outraged that you have to go through this - wish we could help in some way-but send you loads of support from here.Definitely go to the press.

Thank you for the support. I am still a bit numb about it all, so so angry. Didn't sleep last night, actually climbed into bed with ds and cuddled him all night, wanted to be next to him so I knew he was surrounded by my love.

Have finished my letter, the way I have written it I will be able to copy it to MP as well and not have to write another one. I am also going to cc it to all the lying so and so s so they can see exactly how i can prove they have been lying. I have already demanded a meeting with c xo on Monday via his pa, if they do not set up an appointment I shall "sit in" at the building until he gets out of his office to speak to me, no matter how many days it takes.

Sparkle - I haven't been reading the detail on here recently.

However I am so sorry about your current situation.

This might all be water under the bridge but has your LA got a Complaints procedure? If you haven't exhausted that you might find they direct you to using it. Might be better to do that before going to the press, if there is any remote chance of you still maintaining a positive relationship with some of LA contacts. Apologies if its gone beyond that, but I think you need to try to keep the Director of CHildren's Services on your side.

Pinkstarlight - how are you today?

As already suggested do let us know which drugs you're having as they do vary considerably - and so do individual responses to them.

Don't worry about whether some people work - it is only how YOU feel that matters - you need to do waht is right for you, and you won't necessairly know that yet.

I found the Breast Cancer Care site useful - you need to be careful not to terrify yourself - but there's a good list called something like Top Tips for surviving chemo that you might find helpful.

I'd suggest; get stores in now so that your cupboards are well stocked;
Ask a few friends if they could help with lifts/child-minding now and then if you're having a bad day;
You'll find what you like to eat but I (and others) really enjoyed fresh fruit - especially pineapple.
Drink loads and loads of water the day before chamo and on the day.
Eat what you fancy - in small-moderate amounts.
Warn family you'll prob be feeling really grotty for a few days. I felt grotty for the day itself of each chemo, then a couple of days, but it wasn't as bad as I'd feared and after 9-10 days you feel much better - but your immunity is low so avoid crowds and people you know have a bug.

Nice DVDs, magazines, books on tapes, comfy clothes are useful for low days.

For me the low days were like having a bad hangover - that's the nearest I can get to describing them! I wasn't sick with the fist 2 cycles but the effects can be cumulative and I was sick for later cycles. I had 4 lots of one combination then 4 lots of another in half doses so had 12 lots of drips in all for the chemo.

Hope this helps - you will get through and keep asking anything you need.

Good luck

Afternoon all. Sorry haven't been around for a couple of days - have had a few aches and pains after second chemo and would agree with Sandripples, it definitely feels like a bad hangover. I also had THOSE pains in my side again so hotfooted it to the docs who, like all the others at the hospital, couldn't agree if it was diverticulitis or a UTI so she's prescribed strong anti-bees that cover both eventualities and seems to have done the trick - no more pain. Had a bit of a scare yesterday while we were out - sitting in the car and got a dreadful headache, blurred vision, cold clammy sweat. Poor hubby drove me home where I collapsed on sofa. It turns out it was probably brought on by my wig being too tight. When I whipped it off I was left with awful weals around my head and top of neck so obviousy cut off blood supply. Silly billy.

Wanted to say hello to Pinkstarlight - I've only recently started posting and these ladies are brilliant with so much useful information, hints and tips, cakes and coffee too.

Sparkle, I am so sorry to read about your latest battle. How very dare they? I am so furious on your behalf. I'm sure you will put together a very coherent and detailed reply and hope that someone sits up, takes notice and starts batting on your behalf. I've had my fair share of battles with the education peeps over the years with DS1 and I know how difficult it can be.

hi just letting you know im starting chemo on monday will be as far as i know 3 lots FEC then 3 lots oF Docetaxol all in 3 weekly cycles.i dont know what scares me more the thought of chemo or the body scan im having on the 6th of next month.i know im going to lose my hair so had my long hair cut short yesterday and am off for a wig fitting next week and have also brought my first hat for wearing round the house.

Hi again Pink. I'm on the same 3 weekly regime as you except doing the 3 Docetaxol first and then the FEC. I remember feeling terrified about the scan results too, the waiting is the worst thing. Well done on taking the plunge and getting your hair cut short. I did that too and yesterday DH was persuaded to shave the rest of mine off so now I'm officially a slaphead!! But it's a means to an end and it's only temporary (my mantra).

This is a good website for scarves and bandanas - I've bought several to wear around the house and for walking the dog.

www.annabandana.co.uk/index.php?main_page=index&cPath=27&zenid=j027af5pl3ecioe9cdcetdltv4

Try and enjoy the rest of the weekend, easier said than done, I know while you're worrying away.

Very good luck for Monday Pink, - it is scary waiting for scans and anticipating first chemo. But if you don't mind me saying so, I think you sound a little more ready to get going on the treatment than when you first posted - so good for you, you are doing very well .

Its also good you are preparing for the hair loss and are getting yourself organised. I can;t remember if I've already said this, but get yourself a thermometer (as accurate a one as possible) - so you can monitor your temp. regularly - you are obviously more vulnerable to infection during chemo, so have to be on the watch for any signs of it such as raised temp.

Other wise - take it easy over the weekend, get a stock of nice books/DVD's/music/audiobooks - whatever you might enjoy if you are feeling tired and a bit under the weather. Don't try to do stuff if you don't feel up to it - better to rest when you need to.

Also gentle stuff to use in the bath, shower and shampoo. I used baby products, but Sanex is gentle too and Simple. Some moisturizer is handy - skin can get a bit dry. - And remember they can give you something to help with most side effects - so don't put up with anything you don't have to

lots of love - will be thinking of you on Monday xx

Oh also - dried apricots, prunes, prune juice and plenty of fluid to keep constipation at bay.

And after FEC, you will have red wee for a few hours - so don't panic it's normal

Sorry you've been under the weather Figgy, but good you have AB's now.
I'm sorry I smiled at your too tight wig - I'm glad you got to the 'root' of the problem

thanks every one for your support and advice i have pretty much organised everything,my stupid x (the kids dad) has wound me up by trying to take advantage of me being vulnable omg hes the last person in the world i would want to be around while im trying to get through this.silly sod thought he could just move back in after 6 years of being apart.

long story short hes cancelled the guy who id arranged to help me do my garden and is now not talking to me,aww well at least hes took my mnd off things lol and i now have sheer determination to get through this.

Smiling here too at Figgy's too tight wig!!

As a young girl I got terrible pains once, felt dreadful round the middle. Eventually this was diagosed as my trousers being too tight! It was in the days when those sort of ski-pants with elastic round your foot were very fashionable - for 8 year olds!!

Good luck on Monday Pink. I agree with all KK's suggestions by the way.

Sorry Pink - x-posted. O dear - problems with x don't sound good at all.

Aarrgghh...just typed out loads and it went...not sure what happened there?

Figgy - I'm sorry, I had to chuckle at your too tight wig . I hope your aches and pains ease off and you have a relaxing evening.

Pinkstarlight - good to see you have a plan now. It certainly made me feel better. The waiting for scans is the worst. Is that a CT scan? Have you got someone who can go with you? Sorry to hear about your problems with your ex :(

I am ok today although was very nauseous last night, and couldn't eat anything, which is a shame as I love my food :) It was good as i managed to avoid my mum juicing for me too but I will have to try it tomorrow :)

Figgy, sorry but that made me laugh too. Must have been scary though. It's astounding how paranoid the chemo can make you. Glad it was nothing more than a lack of circulation.

SR at your ski pants. I had some of those too. Glad you got your living room finished. Did Orlando explore the paint?!

Kurri, you deserve to be shot for that last joke. I love the sound of the puppets, though it's a huge challenge. How long have you got to do them?

Sparkle, am and for you. But also was wondering if amidst the crap there's maybe a bit of light. If you can refute what he says in his letter, then with a bit of luck it might turn into a breakthrough. Hope that doesn't sound trite, but from what you say, it sounds like he's given you ammunition. tonight for you. Really hope you're okay x

LGF, sorry you're feeling sick - it is a bit grim if it hits you like that. Try and drink lots of water - I found that helped somehow. Your mother with her juicing mania sounds a bit terrifying.

Pink, your x sounds a complete pita, though it's good he made you so determined. Have you got lots of support apart from him? Honestly you'll feel better once you've started and got the scans done. Easy to say I know, but I don't think I've ever been so scared as when I was where you are, and I'd bet the others would agree, as the unknown's the most scary. You're being amazing just to be getting out of bed in the morning. Get through the scans which WILL BE CLEAR , then once you know how chemo's going to affect you, you can start to work round it and live again.

We went on the March earlier. Was tremendous. Incredibly friendly and life affirming to see so many ordinary decent people joining together.

figgyroll i hope that your chemo gets easier for you i was told that the docetaxol side effects are worse and by the way thanks for the link.

kurri you have given me some very good advice thankyou.

sandripples my x is a pratt he sent messages tonight home with my son to say hes now told the guy to still come and do my garden.

little green frog sorry to hear you have been feeling ill.

smee my x is just sulking because hes not got his own way no matter what he says he loves the kids and i know he wont let them down. my family dont live in my town my mums put her house up for sale as she wants to be nearby to help out and if need be she can come down to stay. my eldest is away at university but shes going to be coming home for the weekends,has 2 weeks off at easter back for 2 weeks then breaks up for the summer and will be home till september also the uni are being very supportive so if she needed to come home in a emergancy its not a problem. ive got some good friends that have offered to help me but at the end of the day they can only do so much as they have their own families and work full time.i think i will be able to muddle through my kids are 15 and 11 so not babies but my youngest has learning difficulties so that makes it more difficult the plan was in a emergancy my x was going to look after the kids till my daughter or mum got here.

eek at too tight wig figgy -and lots of good luck for Monday pink- grrr about x though.
Well done for marching today smee- did you find loos etc ? I hadn't realised that my brother was organising the lavs and coaches etc (he is an events organiser) so blame him if they weren't up to scratch

Sorry you are having X problems Pink - you don't really need that at the moment. At least you are getting the garden guy now

LGF - sorry you've been sick, and that it passes soon. Your mum is determined to get some juice into you somehow - you may just have to give in

Smee - the march looked amazing on the TV, well done for going along it's a good thing to protest about. What did DS make of it all?

My puppets have to be done by June - so not that much time (I've just realised in panic!).

And now the big announcement (it will probably be on the news) - We won the quiz night (and we only had six in our team instead of eight). It was a good laugh and the F and C were nice too. We won a large tin of chocolates - which we decided to give to the Big C Centre rather than fiddle about sharing them out (and I not eating choc at the moment anyway).

Have a good day all, weather looks a bit brighter. I feel robbed of an hour because of the clocks, and have also just remembered we've got to do the census tonight

oh well done KK !!

Smee -= yes well done for marching. Do you live in London? My brother was considering going down but I don't know if he did. He is a fromer consultant and feels very strongly about the NHS.

We managed to keep Orlando out of the paint! The living room looms really nice now. William Morris paper on one wall and colours of coslip/varieties of straw on all walls and coving and picture rail etc. I've hung up some pictures so it all feels cicvilsed again. Quite an effort for DH and me yesterday.

Nice day here. Have just walked round a local NT garden - very inspriign so will go out into the garden now and see if I can do anything. Tupis and daffs and primroses all looking pretty but I need to think about veg.

KK - have you got any veg seeds in?

SR - I've got courgette, sweetcorn, aubergine, peppers and squash planted in the greenhouse to go outside when they are big enough - they are just starting to come up. I haven't planted any of my sow outdoors ones yet. I'm going to do a tub of radishes and a tub of salad leaves this afternoon which I'll grow in the greenhouse then plant more outside when its a bit warmer.

Your living room sounds lovely - I'm glad you managed to stop Orlando 'helping'

we were just talking about planting some radishes ! carrots too,possibly.
Celeste not got the hang of the door yet,despite being pushed gently through.
Dh painting ds's room next weekend so we'll see if she helps !
Had lunch outside but all my fingers have gone white and numb.

Pink, glad to hear you've got some support, and that your X is being a bit less of a prat. Having the kids must be both hard and helpful. My DS was only 5, so didn't really get what was going on. Must have been impossible to tell your 3 as they're all old enough to be worried for you. Hope they're doing okay with it all. Take care tomorrow. Will be thinking of you. x

Kurri, June's not far at all. Blimey though, how brilliant. Do you work from a design, or are you so effortlessly artistic you can just create from raw materials? Huge congrats on the quiz night success, though it's a shame the prize wasn't more liquid.

SR, I like the sound of your new decor. Very stylish. Yes I am London based so would have felt a bit useless if we hadn't have gone. DS thought it all brilliant. We bought him a whistle, and he got totally into the carnival side of things. Lots of drumming and dancing along the way.

MAS tell your brother I saw not one Porta-loo. Though maybe they were all in Hyde Park? We didn't quite get there - DS declared an urgent need for an ice cream near Green Park which couldn't be ignored.

I'm impressed you kept Orlando out of the decorating, SR. MAS you'll have to watch Celeste next week. Our cat has been 'helping' someone decorate today, as he turned up at tea time with white paint all over him. He's black, so DS thinks he was trying to dress up as a zebra.

Am a bit in awe at the level of vegetable ambition. Seem to remember I was last year too. Though small fanfare for me, as DS and I have managed to grow some tomato seedlings. Am ridiculously impressed with them, so keep going to have a look.

Hope LGF and Figgy are warding off any icky side effects today. Waving to all others.

Just wanted to come and say Hello and good luck and best wishes for tomorrow for Pink. I'm the third of us on chemo at the moment: I'm due to have my second FEC on Thursday.

Pink, were you offered the Cold Cap? So far I think I'm the only one using it. Have only had one session of chemo and have only just entered the 'hair drop zone' but I do seem to have had minimal hair loss so far.

Make sure you take all the anti-sickness drugs they give you. Drink lots of water today and for the next few days. Watch out for the steroids - don't take them any later than 2pm - they made me pretty wired and unable to sleep.

Loads of good luck vibes also for Sparkle for tomorrow - what a bastard the CXO! Hope he agrees to see you so you don't have to do a sit-in! Really hope this turns things around and leads to a breakthrough for you xxx