We Talk Brain Tumours

Sue(toy), Hope things go well xx

I also find this site so unfriendly that I post much, much less often. I've noticed that that that the number of posts seems to have reduced substantially since this new site.

Maybe usage will slowly increase over time as new people who are familiar with outher social network sites, are diagnosed and look to Mac but so many 'old' posters who used to just pop in just are not here and frankly I'm not surprised. Even with frequent use this is, in my opinion, an unnecessarily  difficult and unnecessarily  unfriendly site.

A Mac site of all sites should be easy to use for anyone of any age. Support should be for all not just the technologically able.

Probably if someone is a frequent user of social sites it perhaps is not quite as difficult but how many of the 'old' posters used wrote 'I have never posted anywhere like this before'.

So I will also, reluctantly, be using the fb bt group as my main support area. Like Martyn I'll still read here and post. But my first point of support is no long here and I find that so sad.

Not a word from Mac after the first few days. Maybe Mandy is right, they are concentrating on getting the old thread back but how long does it take to write a post and tell us so ?

Actually in a nutshell that says technology not people doesn't it? I'm truly sorry to be negative. Here we should be talking about bt not this sort of rubbish. How many of us have time for this?

I hope everyone is as well as possible today.

CHxx

CH I agree with you post.  I am so annoyed that to old thread has not been transferred over.  What particularly annoys me is the Mac admin people ignoring us.  I have just sent a very stroppy email to them telling them to be honest with us. 

I like to think I am a ok with IT but this site is a nightmare to nagivate and I also feel like giving us on the site.  It is a shame to see so many leaving the site as it was an important lifeline in my earlier days and certainly in recent months.

I think Macmillan have let us down.

Nickyxxx

Good morning Nicky,

You and Amelia are still very much in our thoughts. The photos of her birthday party were lovely.

Lots of love, Martyn XXXX

Well said Martyn.

Nicky - what Martyn said with added hugs!

This is the true spirit of WTBT. Roll on the day when we can get back to it.

Love,

CHxx

Hi mummaggie- am I correct in thinking that a PET scan can differentiate between active and inactive tumour? Not sure but may be worth investigating and if there is one in your area. Not sure of the technical ins and outs but maybe google it? It is such a worry. I have heard of pseudo progression where they are not sure if the tumour is regrowing or just aggravated by chemo of radiation. Good luck x x

Hi Mandy - I think you will find your wall by clicking on 'View My Profile' next to the My Home tab at the top right hand side of the page - strange place it find it if you ask me but there it should be!

X

HI Mummaggie,

Pseudo progression is really the bain of the post rt period. As far as I know, no sort of scan can tell the difference between pseudo and real progression.  The neurologist we see has written some papers on it but it's because the brain is so slow at cleaning itself up so the intentional damage the rt and tmz has done has to be cleaned up but while that is happening it can look like tumour growth.

I also have a lot of faith in PCV. It was the drug of cohoice before tmz. At the moment my partner's blood results don't allow him to take it. I also think doctors give up too easily on tmz. But in those first few months after rt I can well understand they don't want to take the chance. You could always go back to it later? It's good to have as many possibilities in reserve as you can isn't it?

Best wishes,

Love,

CHxx

Hi everyone

Nicky, lovely to see you here, though it's not as it used to be as has been said. 

Like CH and Martyn, I won't be using this as my main 'drop in', I will also be going to FB - far easier to navigate and have some wonderful BT friends there.  It's unfortunate as it was good to separate the two areas but not now - I have been on and off FB today and this is the first time I've bothered to come on here.  Good points made by CH - I'm not that up on technological stuff but can manage quite well - my children have helped me here and they too say it's complicated with too many areas - they are older teenagers and live their lives on the computer so it says it all really.  I agree with CH that although new posters may come this way if they are older or poorly are they really going to manage to navigate their way around - someone needs to take all this very seriously indeed as it's peoples lives they have meddled with, we didn't ask for anything to change, it just happened without warning - too many people left behind and lost for good.  It's disgraceful and badly managed.  Macmillan has to take some kind of responsibility for this - they are a successful organisation who do wonders for many people - but in this instance they have failed and it needs to be recognised.

I am rambling and as CH also quite rightly points out, too much talk of the site and not the issues, in this case BT support.

By the way NeraK - thanks for the direction I had found it but it is in a strange place - the homepage was the obvious choice but maybe that was too obvious!

If people I have been in contact with for some time want to find me on FB my name is Mandy Rowbottom - from there you will find others who will no doubt befriend you as WTBT members.

Suetoy and Susan206 take care xx

Hi all. Long time without posting as I don't like the new site but I do find the chat room useful when it works. I decided to use the emailing of replies option for this thread and it works well to be able to keep up with whats going on.

Take care and all the best.

Dear Mummaggie my daughetr had TMZ but at the first scan post Radio the BT had returned. shes now had 6 courses -on last one at the moment! of PCV -but without the V as Doc doesnt feel that would help her and since then- touch wood no new progression- so I see that as positive -she did have a time when she had to stop for 6 weeks as her platelets were 18 and neuts 0.1 but she has been ok on it but shes had enough now- asleep as I type- she was only awake about 6 hrs yesterday but she is going to school. Love to all Dianne J x