We Talk Brain Tumours

Hi Jean, good to hear from you.

This site doesn't seem, as you suggest, to be generating the number of posts that Share did.  Various ones of us have also contacted Admin about the old thread and the confusing number of ways people can post - as far as the old thread is concerned we were initially responded to by a reply of 'soon' - however, since then no further responses and actually I am finding it quite rude.  The worrying thing is that people aren't getting the support that we so obviously received from the old thread and based on the number of posts there I don't think Admin can argue with that - but this hasn't got us anywhere.

It does unfortunately seem that we have lost many of our posters. I know the others are sad our thread seems to be virtually inactive but many of us have lost the will to try and navigate our way around.  Are you on Facebook? 

Sorry to read that Paul is not doing so well - it's all so demoralizing and so very very sad and yes a truly horrible illness.  Take care, I do keep popping on every day so post away as I'm sure you could do with the support that our old thread gave us. xx 

Hi Mandy,

Lovely to hear from you. No I'm not on facebook,still a mystery to me I'm afraid! I know exactly what you mean about trying to navigate this site it is just so un user friendly. I agree with you that people may well have just given up with the site which is just so sad at  a time when they are so in need of support. I have seen several posts on other threads from people saying how lonely and isolated it has made them feel.

Hope you are ok Mandy and that your husband is as well as can be.

Love

Jeanxx

Hi Jean,

I'm sorry to hear Paul is not too good at the moment.

Like Mandy, I have just about given up with this thread and the total lack of courteousy shown by the administrators. They are not answering or even acknowledging our recent emails. Several  folk from the old thread who were needing support don't appear to have made it to here, potential new posters are also noticable by their absence.

In my opinion the site is not user friendly, and if we carers are finding it difficult to negotiate then what chance most BT sufferers.

I will continue to read and look out for any new posters and those needing support, but will be found more often on facebook where we have a very supportive circle of friends and as far as I am concerned are open to anyone who wishes to join us.

Hi Mollie, I will ring Doreen's ns on Monday, but yes hopefully no news is good. Thank you.

The very best wishes to you all,  Martyn Elvin XXXX

Hi MARTYN ELVIN

Ooops hit the wrong button! 

As I was saying - very proper that Martyn!!!  Anyway my wall has disappeared - on my Homepage there's nothing below the newsfeed - that is where it was isn't it? xx

I've just been on your wall again!

Click on, view my profile, yours not mine and scroll right down to the bottom. As I told Y & Y, your wall is near the bottom! XXXX

Ignore me, most do!  I've found it - not on my Homepage obviously - clearly informed by Ying and Yang the other day - not by Admin as that would far too helpful!!!!

Hi all

I messaged James on Tuesday I think it was (the day before the site went down) and he replied saying that it would hopefully be over the following day (so probably wednesday)....... still no sign, but I don't THINK they have forgotten

love Ali x

I'm glad you're optimistic about that Ali!  I'm a little dubious since they haven't answered so many of our emails - though I suppose you could argue that they are busy dealing with WTBT rather than answering our same question - Where is it???  But thanks for the update - we'll watch and wait and see - seems to have become my mantra for so many things these days!

Hi Debs.. I think they are playing it safe. If the tumour has progressed on TMZ then moving to PCV is the next logical step. However, if it is pseudo progression and the tumour has not progressed the onc tells us that PCV is just as good and will be similarly effective. He reckons TMZ is more widely used 1st line as it better tolerated than PCV, but that the PCV works just as well. They had to change therapy to be on the safe side. Yes, I agree that pseudo progression has got to be better than real progression but I feel like we are in limbo - is therapy working?...Is there progression or not, and when will we know for sure.

Hope your buttercup headache is better today...

Talking hammies..Littlesis bought 2 Roborovski hamsters yesterday...they are so cute..we just sit and watch their antics..better than X Factor!