We Talk Brain Tumours

year 9 - I remember it well.  I was informed its the only year of your life when nothing much is expected of you so you don't need to work at school!   I thought it through and year 7 you are the new kid so have to establish yourself year 8 you are still new and relax a little year 10 GCSE preparation Year 11 GCSEs years 11/12 = A levels then university then work so yep had to agree year 9 is the only year you get off in your life and boy did my son take advantage of it!!!

Hope it goes well Debs, and the photos are great

love to all Jxxxx

Oh Debs how we love our girls. Our youngest daughter like yours and naomi's is 14 but in year 10. (she  is one of the youngest) Has never been much trouble at school until a few weeks ago, when she swore at one of her teachers. When she told me I was stood in a very long queue in the bank. " Mum I've got something to tell you. I had to go into isolation today"  "Oh why Love?"

"Cause I told my teacher to F Off. "  "WHAT!!!"

"It's not that bad mum I only said it under my breath."  The man stood next to me nearly collapsed with fits of laughter. You can guess the rest. This was sssooo out of character for her at school. Different at home sssooo  moody, sensitive, in tears or swearing her head off. I have been through it before with her elder sister who like your daughter just would not conform and was sent home from school numerous times for refusing to hand her jewelry to a member of staff after removing it etc etc.

My lovely eldest daughter has just gone 21 and has been my rock throughout Chris's illness. I don't know what I's have done without her.

However with my youngest at times I am at a total loss as to what to do next with her. Hopefully she has agreed to talk to someone at one of our local hospices next week. ( but we have been in  this position before and  she has changed her mind) Hopefully not this time.

But I have to agree with you both My son who is in year 11 has so far just been a breeze.. Long may it last.

Chris is not much help because at the moment it seems that he can't bear to even speak civilly to them.

Pam love you are always in my thoughts.((((((hug))))))

Julie and Mrs SG too ((((hugs))))

Welcome Luaraloo gosh you have had a torrid time stay strong love.

Love and peace

Denise

Very sorry to hear new people here and of the stories of family members.  We'll be here to support you every bit as much as we support each other.

GBM people might want to read of this device that's been approved by the American FDA

NovoTTF

I don't know whether this is applicable to us in the UK, but it's good to see that there's more than just snake oil out there.

please don't tell me she is normal lol, at least I don't feel so bad now knowing I am not alone.  My boys have just breezed through school no real problems at all.  Sean is in year 11 and got his 1st after school detention this year (for being late to lessons twice in a week)......I have to say, I just laughed!  Jack is year 13 and about to sit his A Levels this year and the only trouble I had was when he didn't like his form tutor in year 11, he would go to registration as late as possible to spend as little time as poss with him.  Well, we can't like everyone can we!  Seems pretty minor compared to what my little madam can do, she might not make it to 14 in July if she keeps up the attitude!  I just can't stand all the mini drama's in their lives, a girl called Lara a rat today, you should have heard her telling me "she said, I said.....I BBM'd her this, she answered this"..........my mind wanders very VERY far away when she starts these stories lol

Supposed to have a little more snow tomorrow, as long as it doesn't stop me getting to Queens and getting my official results and then off to the RAH for Cirque De Soleil....nothing and I mean NOTHING better try and get in my way.

Love & strength to all who want or need it xxx

Pete, I've been following the NOVO TTF trial for the last 3 years with interest, although I am not sure I could cope with wearing the electrodes 24/7 and carrying the battery pack everywhere.....but then desperate times and all that.  The results have been very encouraging indeed, it was available in Europe but not exactly sure where.

There's another new development on the horizon for recurrent anaplastic astrocytoma's called Sequentially Programmed Magnetic Field Therapy.  It's being discussed at present in one of the yahoo BT groups I belong to.  It's along the lines of the Novocure.  Hopefully it will be trialed further and rolled outside of the USA.  The members are mostly carers like here but they are so bloomin clued up over there, I feel a little 'uneducated' and mostly read the posts but don't post often!

Love & strength to all who want or need it xxx

Hello everyone I hope your all well.

My sister had her week of Chemo last week and was pretty sick with it, never really got out of bed after going to the hospital on Monday but she said it was expected so wasnt to worried. I spoke to her yesterday and was very shocked with how slow she was, it was almost like rewinding the clock back 5 mths to how she was after the surgery. Im hoping it was because it was 6 o clock and she was tired but it kinda bothered me a bit as i didnt expect it.

She seems really good though, it is her daughters 16th bday today so they have been celebrating. She has another week of Chemo at the end of the month im not sure it will but hopefully she wont be as sick and will be a bit easier for her.

The world is such a huge lonely place right now, I personally feel like im being swallowed up by a big black hole i dread to think how my sister feels

Wishing and sending you all good positive vibes

Guys - still here. Hanging in there. Everything calm. Tony slept pretty much all day. Knackered so going to sleep now. Reading all the posts though and will chip in tomorrow. Too exhausted now.

Thanks for your kind words Naomi and everyone!

Night night.

Pam

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Hi guys..

Thank you so much for all your kind words and support, just by posting yesterday to people in the same position as me has made me realize its not just us that are in this horrible position!(so strange why you always feel so alone)

I have been singed off work to care for my mum and its so lovely to know that if im having a bad day that your all here.. thank you so much.

Today has not been a good day, mum has been very confused, maybe an infection...i spoke to my cousin lauralou earlier and she said her dad didnt have a good day either.. maybe an infection too.. if one is bad, so is the other.. again we have asked today why is this happening..tomorrow is another day.. appointment with the oncologist re radio.

Good night God Bless you Lovely people xxxx

Marney - Hope the minor op went well and that you're getting at least a few days without incident from either of them.

Pam

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Hi laouraloo

I was absolutely totally speechless when I read your post - those who know me will understand that doesn't happen often. Poor you. What an awful lot your family are having to go through right now. It does seem so terribly cruel that so much of it has landed on your families doorstep. Your head must be spinning at times.

I'm not really sure there is anything appropriate to say except we are here for you but I think you probably know that by now.

One day at a time - that's what everybody says and it seems like such a cliched thing to say but it's absolutely true. Try not to think too far ahead. Just wake up every day and try to get through it as best you can. It was the best advice I was ever given and really does work.

Welcome to WTBT. Everyone on here is so lovely, a little crazy (in a good way) and just the best group of people I've never met.

With much love.

Pam

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