We Talk Brain Tumours

Well this was my first visit here for a bit but I wanted to send a message to Dot and reply to Suetoy so spent some time typing out a longish message which disappeared when I pressed "post." Grr!

Dear Dot, I too will never forget your funny, poignant and inspiring accounts of Dot and Roger's Big Adventure and I was so sorry to hear of your beloved Roger's passing. I hope you have your family with you now to give you comfort. I can't imagine how you will be feeling just now. Thinking of you and sending you much love.

Sue will reply by text. I just can't get on with this site any more.

xxx

Okay so where do i start. 

My name is Lucy and my mum passed away easter sunday 2007, a special day for as very special lady. She use to call me Lou Lou, hence my profile name. I have been a part of WTBT from day one as it was started up just a couple of weeks after my mum passed. I could have really done with it before, but when i found it, it did help me through with all the support and wonderful people on here that were going through the same as me.

Ii am absolutely p****d off with this site. I have returned and found that all of the old mac WTBT  has totally gone.  How guttering is this. I left my my most precious and personal thoughts and feelings on here  at a very vunerable time in my life. Theses are my my memories and they been deleted. Does anyone no why? I feel so upset i feel like i could cry. 

I am not sure if anyone is still on here who use to know me and it is so upsetting to see how many people are going through this horrible horrible thing. But i am so pleased everyone can come together and help each other and give advice and just being here to listen. 

I would still like to help people even though i have lost total trust in this site, but that is no-ones fault except the admins of this site. If you would like to look at my profile please feel free and this basically describes everything i went through. 

I am now going to go through and read all the posts and get to know you lovely people. 

I have als created a group on facebook called UK Glioblastoma and anyone is welcome to join and add pictures and stories of their loved ones, or even themselves. 

Sorry for my rage and i want you all to know i have great empathy for all of your pains and feelings and i will try to support every single one of you as best as i can.

Lou Lou xxxx

Hi Lucy,

Of course I remember you, I hope you are well?

You are right, they have all but ruined this thread and it appears lost much valuable information from our original WTBT posts. It is very noticable that we are getting hardly any newbies posting. I really hope that there aren't people out there looking for, but unable find the help, support, advice and friendship that we were fortunate enough to find.

A few of us pop back daily just to check for any new posters.

Take care and best wishes,

Martyn XXXX

Martin thank you for your kind thoughs.

Dot I am so very sorry to hear about Roger's passing, my thoughts and prayers go to you at this very sad time.

SueToy sorry to read what a terrible time you are having so sending good vibs and a big hug for you.

xxxxxx

Hi all. Wishing everyone all the best. The three months have flown by since my wife passed away and it is starting to get a bit less painful. It is so sad that the new Mac site has been a bit of a flop for us. I must admit that I cheat and get emailed every reply on this thread which helps me keep up to date.

Take care

Hi Padster,

Great to hear from you again and good to hear that the pain has started to recede. The new site is a bit of a letdown isn't it? hopefully it does not deter potential new posters.

Best wishes,

Martyn.

HI Sue,

I was wondering how things were going. Second debulks can be harder than first I know. Big hugs to you. xx

Loulou, I think I posted after you in the old thread but read back from the start. I totally agree and hope one day I have the energy to contact Mac - maybe the Partons or something like that to have a moan. But not at the moment.

To everyone reading, my best wishes.

CHxx

Hi Everyone

Loulou, you're right this site has been well and truely let down by Mac and without any explanation other than a technical hitch which they said they would have put right asap - failed to deliver on that and various other points - I think most of us have given up with trying to sort it - I spoke with them personally but still no result.

Hi Padster - nice to hear from you, hope you're taking good care of yourself now xx

Martyn and CH - well need I say more?  xxxx

Suetoy, I'm so pleased that you've posted, I really have been worried about you.  It's sad to read that things haven't gone so well and that your Pete is struggling to recover still.  I hope things do improve when he comes home, I know that when my Peter was able to start coming home for weekends at first things did improve as he had his own familiar things around him and no amount of rehab was going to be able to 'teach' him these things - keep strong, I know you will.  By the way if you want to see the emails I sent to you on this site scroll up to the top of the page and on the right-hand side you will see 'private messages' , just under where you log-in.

P falling asleep at the table so will have to cut this short - Hi to Sue206 as I dash xx

Dot, I am sorry to hear the sad news, your adventures and travels gave us all hope and kept me going thrugh difficult times last year. I know Roger will be sadly missed by all who knew him but he is at rest now and suffering no more.  Thinking of you

Graham                                                                                                                     

Hi Graham,

Good to hear from you again.  Hope life is treating you kindly.

SusiiQ xxx