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

[MaryAnnSingleton]

just in case we run out of space !

KK, how very sad, for all of you. Will you be able to go to the funeral? - rather too far, I expect. It is awful when such lovely people leave the world, they leave such a big hole, even if you didn't see them often. And it's never quite expected, even if it wasn't unexpected, IYKWIM.

Sparkles, I imagine you want to go round there with a huge shotgun. It hasn't been long, they didn't give it much consideration, did they? I have lost track of exactly what you have tried, as it is all so alien to me and I don't understand the system. It seems to me like you must have tried everything, so ignore me if I go over old ground, but is there a self help organisation for hypermobile joint conditions? I am sure I have read something on here about it (in a different thread). I can't think of anything else. I am so very and on his behalf.

If there was some equipment, or physio that might help, would it be possible to get people on a fundraising mission for it? If it was publicised and well-supported, it might put pressure on the school and the local authority to be more supportive. I am only thinking aloud, don't expect it to be any help. But if it IS any help, and you need assistance with writing promotional materials - that's my game, happy to help for nothing, just ask. Otherwise, just a x and a consoling hand hold from me.

Kurri I xposted with you. I didn't mean to be insensitive. I am so sorry to hear about your mum's dear friend. I hope your mum is ok, such a shock no matter what age or whether it is "expected" or not.

Cakes - thank you. I did start an EDS hypermobility thread on sn children, and that is quite supportive in our own way. There is a website/support group for hypermobility syndromes but it is quite limited, and although it describes many of ds' symptoms, it can't help with his spinal issues as no-one seems to have an experience of his spinal issues. There is a better support group in USA, but I can only access their info pages. You made me think what does he need to make life a good as it could be for him, and I have such a long list already, no-body wants to do the things though because they all cost money. I had thought the dla could pay for those things, carpets for school, carer support, foot rests, laptop - the one we have will be loaned for two terms then we have to buy him one, training for staff, mri's scans, xrays, someone able to interpret them - which at the rate we are going we will only find in USA, hand rails for the bath and shower, pain management classes, disabled blue badge - can't get that now without dla sorry I won't bother going on.

So as we stand we have no dla, acknowledgement of letter to Director of child services for LA, no response from Rheumatologist letter pleading for help, no ortho surgeon, no pain management, a report of what is needed to support him in school, but so far school have provided a 20p triangluar pencil grip, no news about different school, no places in any disabled access mainstream primary schools. No money, no job, no help, no hope.

Sorry will stop, not fair, didn't mean to dump all this on you. Just right now, this is one more thing than I can handle.

Sparkles, dump away, that's one of the purposes of this thread. I wish I could think of, or do something that would help.

Thank you for being so nice

We have a little boy near us who is just 8, and has many physical challenges. He is in DD's class. he is lovely, though challenging, and I suspect not quite as articulate as your ds. but he and his family have so much to put up with, and everything is such a fight, every day. Just recently his Dad has been really down (probably his Mum too, but she is someone who always tries to show an 'up' face, probably like you, so it's harder to tell). Everyone else just feels so helpless, because there is nothing we can do apart from giving him our time, which is such a little thing. It's the pits. This isn't helping, I know, but I just said it to let you know I have seen some of how hard it is, day in and day out, and huge respect to you for fighting so hard on his behalf.

Can you stir up some enthusiasm for something a bit enjoyable for your own sanity, before you have to get brave and face the school run?

Ah Sparkles, that's total crap. Not surprised you feel so low. Really don't know what to say, as you're so obviously bright and on top of it all, so am sure have tried everything. What about your MP, seem to remember you wrote to them. Could you go down to their surgery maybe and see them face to face? Citizen's Advice??? Sorry, probably woeful ideas. Cakes idea of a shotgun, is far more enticing. Am sending you huge virtual hugs. Don't apologise for venting on here. Maybe it's a help to splurge it all out - please tell us if there's anything we can do to help.

Kurri, that is sad about your mother's friend. Very hard when a piece of your life slips away like that. Will you go to the funeral? I know it's a long way and also that maybe it's too far for your mum. How are you feeling today? Hope you've wrestled those pills into settling and are a bit brighter, though I doubt this news will help.

Hoping LJ's through to the other side. Let us know when you can, LJ.

LGF you sound like you're doing well. Great to hear you're not too feeling too bad. And I'd bet we'll both have clear smear results. Be a bit of peace of mind at least.

Figgy's worrying me a bit - am hoping her bloods haven't dropped any further.

Pure trivia here, but DS took his armbands off for the first time yesterday - he swam a whole yard without drowning. [proud mum emoticon]

That is the hardest yard he'll ever have to do smee , it's all smooth waters from here on in....

oh God sparkle -am and too - it is just plain wrong--so ridiculously unfair- I am so so sorry you are having to go through this. If you do need any fundraising help please ask- i can rustle up pictures/cards to donate to raise money. A huge hug from me.

KK - how very sad about your mum's friend- she must be very very sad -such a long time to be friends too-I can imagine the wrench of losing such a pal.
Please thank Mr KK for Seamus,who arrived just now- and for your sweet little teacup card which I will keep in there as my bookmark.

On a frivolous note-my hair is now cut in a short,sharp bob- I coughed up for some expensive styling (it's called relaxing actually) gel as it was used to make it look nice and smooth -am a sucker for things in nice packaging too.
Love to all- esp. sparkle- hope LJ is gliding through her treatment today and that figgy is ok.

sorry-well done junior smee- I remember ds's first proper width and how joyful he was-he made huge progress after that.

Liking the sound of the hair, MAS. And relaxer sounds very smart.

First yard swim badge for junior smee Has he still got lead swimming trunks on though like my ds. My ds is all flailing arms and legs, not moving in the way he wants them too, combined with lead weighted swimming trunks, he just sort of sinks in the middle after about a yard.

Thank you all for your support. I have just sat and cried for two hours, now have to make myself look presentable before school run and singing club at the school.

I did write to the MP re LA rubbish treatment of ds, need to do the same in respect of NHS treatment, don't think for a minute that Bill Cash will do diddley squat, at least my expectations are already low there, only way is up. For DLA he would jus say go to independednt tribunal, but with all the eveidence they have already had that is just pointless, and many parents take a solicitor along with them for that, and I can't afford that. So, we managed up until now, we will have to manage henceforth. Maybe fundraising for specific things is the way to go. I could so do with some help and advice though, the doctors decribe me as more knowledgeable than them, which is a huge joke as I don't have a clue what I am doing. Talk about the blind leading the blind, this is the ignorant leading the ignorant.

MAS you and I now match in hair styles.....I had to spent a whole 10 mins on mine this morning!

thank you Cakes- I am being very profligate with my hard earned money -must try to resist temptation...

A nice haircut is NOT profligate, it is a necessity. As is some nice product to put in it.

Mine is still very, very short as i keep having it cut, I really like it short after all those years of long, and it gets compliments now, which it never did before. A wash and a squirt of volume spray - then it takes about 3 minutes to ruffle dry with a blow dryer. Perfect!

Now sparkles I may be wrong here but I am sure someone told me today that the Beckhams paid for a trike for their son who has disabilities. I queried it and they say this is so - not sure if they have a charitable fund of some kind? It would not be the first time I have got the wrong end of the stick. I'll ask again but if this is the case, give it a try????

You are right, I need to look at other options, potentially charitable ones, and I need answers from the LA and NHS.

Sparkles - I'm so and on your behalf, and your little boy's behalf. It is just disgusting the way you have been treated. I wish I could offer practical advice, but I have no knowledge in this area. I can only offer hugs and good thoughts. You know of course that you are a brilliant mum, your love for your family shines through.

Thank you for kind words about mum's friend. I don't think I will manage the funeral - it is a long way, but I think the church will be packed out - she was a much loved lady.I'm writing to her daughter tonight to send my love to them all. I think it will be too much for mum, and it would be at least a couple of days, and she doesn't like leaving dad overnight - she worries something will happen and she won't be there.

I like the sound of your hair cut MAS, I'm sure a bob will suit you very well. I seem to have a mullet at the moment (does anyone remember Pat Sharpe? - that's who I look like )

I'm glad Seamus has arrived. I am really enjoying Toast - I think I will soon be finished because I can't put it down for long.

DH really enjoyed giving his books out at the Big 'C' centre and in the chemo unit. One woman was really touched, she said she loved poetry and he'd made her day

Well done to Smee junior - he's well on his way - today a yard in the pool, tomorrow the channel

I hope LJ is feeling OK and not yukky in any way, and is taking things easy. Also hope today has been good for LGF, and that Figgy is staying well and the blood count is picking up.

Love to all.

Kurri, we both have mullets. And MAS, I have bob envy. I used to have one of those (sob). I bet you look wonderful.

Seriously though, what is are these exotic sounding hair products. I honestly am a complete ignoramus. MAS, this relaxer - could it sooth my chemo curls? And Cakes, what on earth is volume spray?? Sounds a mite explosive, or does it just make you bouffant? In a gorgeous sort of way of course.

Sparkle, my DS has lead trunks too. He insists it's the right way to swim. I think you need and treats tonight. Such a sod of a day. Wish I could think of something to help.

Little Smee is trying for another milestone this week. Evil mummy has said he can't have a watch until he can tell the time. Tonight he very confidently told me it was 'Quarter to half past six'. Not quite there yet then.

Hope everyone on chemo's feeling vaguely alright tonight. At least you've all started now. Virtual hugs from me to you all.

Sparkle - I also feel inadequate as I have no experience of your problems re your son's needs. Just hope you will continue to find strength and somehow I know you will, even though its so hard, because you're a fighter.

KK - sorry about your mum's friend. Also, I'm sure we probably had this exchange before but - with chemo-brain excuse - I'd forgotten you'd also been to Edinburgh Uni! (Blimey, am developing demetia and turning into my dear mother...)

I also got my hair cut last w/e and its short and spiky (with a product when I remember to put it on) - love the look. Even my brother commented on my new 'gamine' style.

Bit exhausted due to rushing round the country and falling out with SatNav and then catching up on a LOT of work today.

(Whispers) Did I tell you I had dinner with Alex Gutenplan on MOnday night?? Shhh. My DD and loads of others were there too but it was good fun!! (Now which of you can remember who he is - ha! That's your starter for 10 tonight.

University Challenge. Was he fiercely bright? Though I suppose they all. [feeling inadequate emoticon..]

Well done Smee, you're top of the class. He wasn't fierce - a very nice guy really. Yes they're all very bright but this group (its an orchestra) aren't fierce, thank goodness. If they were, my DD wouldn't stay in the orchestra!

The conductor was also a junior surgeon and the piano soloist had a maths degree and was not studying gradulate medicine! Stunning individuals.

Bugger just lost my post, start again....

Sparkle I am amazed, baffled and furious that you did not get the DLA. I was convinced it was going to be a Yes, think it should have been first time around, but what do I know, obviously?

Is there anyone in the EDS support group who has been successful and who could help you with the appeal?

I also cannot believe the lack of support from authority and above all from your son's school. Carpet and foot rest (writing slope? DS2 had one) should be their responsibility and surely are quick and cheap to supply.

Have a closer look at local, unusual, non-specific charities/trusts. We have one locally that will give grants for education-related things for families in need. I only found out about it when DH was out of work for several months year before last. I was worried about DS1's clarinet lessons and someone told me about it. In the end I didn't need to apply (school put him in a larger group so lessons cheaper), but I bet not a lot of people know about it and I am hoping there might be something for you locally.

Kurri I am so sorry for you and especially for you mum for her loss. xx Hope things have gone well with the drugs today.

Figgy and LGF - hope you are both OK. Figgy I hope all is well with your white cells, worried about you xx

Today went "as well as can be expected" as they say. I found the cold cap just about tolerable, but not sure how well it fitted on top so how well it will work. Next time I shall give my contact lenses a rare outing as the worst thing was it pressed hard on my glasses and thus on my nose. My nose was broken in an accident 3 years ago and I had rhinoplasty (internal straightening) just last summer, so a bit delicate. To add to my other charming accoutrements I had to put a wad of tissue under the bridge of my glasses to provide some cushioning!

I feel.....well, early pregnancy is about it! Eyelid-drooping tiredness, constant low-grade nausea (despite v good anti-sickness drugs), leg ache, headache. Also feeling a bit dizzy and noticed heart was thumping this afternoon. Not classic FEC symptoms, maybe hidden anxiety and/or the cold cap.

Very disappointed only had one red wee! That was whilst still there. When I got home later it was nearly clear. Is three and a half hours a good record or a worrying sign?

Oh by the way DS2 swims at about 45 degrees in the water - have been told it is because of his hypotonic muscles. It may help to strengthen core/trunk muscles. DS2 does kind of sit-ups at karate which helps. Another exercise given to him by physio was to play (eg doing jigsaw puzzle) raised up on hands and knees, back as straight as possible, not sagging. Another to lie on back with knees up, then raise bottom to form straight line if poss from knees to back. I used to have to drive many toy cars through the tunnel he created to encourage him! Don't know if any of these are any good for you (Sparkle I am sorry, probably not?), but hope so.

Thank you LJ - yes I have felt a bit better today, hoping the drugs are settling down a bit.

Well done for getting your first chemo out of the way. Sorry you feel a bit off colour - I think early pregnancy is a good description - I would say that is how I felt on the day of my chemo. I don't know what anti sickness drugs you've been given, but I was told to pre empt the sickness i.e. assume you will feel sick and take the tablet, don't wait until you do feel sick. That way you can sort of arrange it so you don't feel too sick when it's meal time.

I hope the cold cap works for you I started with it but it didn't work for me, I think it was too big. It is very cold though isn't it - rubbing your on the soft palate on the roof of your mouth is supposed to help with the 'ice cream headache' feeling.

My red wees generally came the next day IIRC - so you may not have got rid of them all yet - plenty to drink will flush it through quicker.

I hope you get a good night's sleep, take things easy - don't try to rush around like a mad thing doing stuff if you don't feel up to it xx

well done limejelly - hope you manage to avoid feeling horrid -take good care of yourself.
We are big University Challenge fans here-yes,I do remember him. Dh's favourite was Magdalen's Fitzpatrick who was a very pretty and clever girl -some years ago now. I always liked Imperial Totty,simply because it's a brilliant name
Ds swims with his own special style-unorthodox- but it gets him along pretty well-he has probs with coordination and weak upper body (he had much physio and OT help throughout junior school) and his fine motor skills- swimming really helped strengthen his arms. Underwater he is like a fish- much more agile-he could do a whole length underwater (health club pool,not standard swimming pool,mind)
My hair generally looks unkempt so am hoping the relaxing gel might make it look decent-the cut is good,it's just me.
Am fretting over Celeste's operation tomorrow- my friend who has Celeste's twin had her done on Monday and said it is very upsetting,which has now worried me- have urged her to eat lots today as she's now nil by mouth. Love to allxx

Big hugs MAS and a nice scratch under the chin/around the ears for Celeste for tomorrow!

I remember Imperial Totty too! We are usually UC fans but have missed it recently. One of our old friends, years ago, was on it and the clip of him saying "Duckbill platypus" is featured heavily in a documentary about UC!

DS2 is also better at swimming underwater than on it. He seems to have amazing lung capacity (maybe weak muscles allow lungs to expand more than usual?). And just last week his teacher said he is already so good at diving (very supple of course and precise) that we should send him to a diving club when he's old enough. She even used the word 'Olympics' [almost obscene pride]

Kurri I am very lucky and a bit that as a private patient I automatically get the expensive good drugs. Have Emend and Ondansetron and I'm gonna use them! Have skimmed the leaflets and the dizziness and palpitations could well be side-effects of these two though.

Off to take drugs and go to bed (sounds pretty wild! but not..) Love to all xxx