We Talk Brain Tumours

FormerMember over 15 years ago

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Hi everyone

I am just trying to navigate myself around the site. Still struggling, but thought I would try and make a temporary place for the WTBT folk as we are all wandering round like lost souls at the moment- don't know if this will work- but worth a shot while Mac try and resurrect the old thread

Love Ali xxx

FormerMember over 15 years ago in reply to FormerMember

Hi Robin I thought things were not good for you as you had gone 'quite'. It amazes me just how strong on the surface you sound even managing to still be comical, but I am sure underneath, you are hurting, words are difficult to type at this time. I have been thinking about you alot over the past few days and I am really sorry to hear that things have chaged for you and your lovely family. Shedding a good few tears whilst writing this post - for you and your family, for me and everyone else who is going through this dreadful situation. I am beginning to feel what is all this treatment about. It seems to prolong life for a while with not much quality of life along the way but I suppose deep down, we are always hoping that our loved one is one of the few that do actually beat it. That is what you have to believe and hang onto. Our problem since November is not being able to get out much so affects life big time. Steve is on chemo at the moment and again he is coping quite well although a bit sleepy. He is starting to get some movement and strength back in his arm and can move a couple of fingers, so good news for us really. All we hope for is that he gets back to where he was last October before the series of fitting so that he can walk un-aided again. Anyway Robin, enough of me and know that my thoughts are with you at this time. Take care Ann x

FormerMember over 15 years ago in reply to FormerMember

Hi Y&Y

Long time no speak, but I am always reading everyone's posts but it is sometimes difficult to reply to everyone.

It is also difficult to know what to say because the typical English thing is to ask how someone is and they reply oh I am fine when all they want to do is scream and say no I am not fine!

Just letting you know that I often think of you and just sending you my love and thoughts.

I find this site addictive and sometimes I feel that I shouldn't come on it so much because other peoples situations are very upsetting and I end up in tears but on the other hand I find it very supportive and it helps to speak to people who know exactly how it is for all of us.

Anyway, take care and I will keep reading

LOL Ann x

FormerMember over 15 years ago in reply to FormerMember

Robin - tough times for you at the moment. Sending you love and strength, and also for your little ones too.

Sally

FormerMember over 15 years ago in reply to FormerMember

Hi Anne, Yes I think of you all often too. Well lets say I have up days and down days I think that sums it up! Having a manic few days at the moment where I am painting everything in sight-but right in the middle of it I thought " whats the point"? Bit impatient and impulsive if I was to tell the truth but to get to where I am not quite sure? Sounds like something out of Alice in Wonderland. Sending you a hug in case you need one. x

FormerMember over 15 years ago in reply to FormerMember

be strong my brothers and sisters! the cure is on the way! ... i hope soon enough. so hang in there! what else can we do? ... and lots of love.

FormerMember over 15 years ago in reply to FormerMember

Just putting the thread back up.

XXXX

FormerMember over 15 years ago in reply to FormerMember

Hi all. I know that we all read BT threads but just wanted to let you know that I have posted correspondence between myself and CRUK on the Parents of children with BT thread, as CRUK have written to many people with regards to the amount of monies they feel they are putting into BT research.

Love to you all

PEABS XXXXXXXXXX

CH, have replied on the other thread if that's ok. XXXXX

FormerMember over 15 years ago in reply to FormerMember

Thank you all for the kind messages of suppport, greatly appreciated.

Just to let you know that Jan is going in tomorrow for some well earned respite. No doubt the house will go to rack and ruin whilst she is in.

Thought for the day - Next time you see a car with the registration BT 04 *** don't buy it ! Perhaps I mean "note to self""

Best wishes to all - Robin

FormerMember over 15 years ago in reply to FormerMember

Robin,

Just to say mate, every good wish to Jan you and the children.

Martyn.

FormerMember over 15 years ago in reply to FormerMember

Thinking of you Robin. Hope the hospice is a positive experience for you all xxx

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