We Talk Brain Tumours

Sue -well done you, I'm going over to FB to look for it.  Hope Paul is recovering well and you are coping as best you can.  Thinking of you xxxxxx

Oh Hell I don't have any idea how to get onto facebook & although I could ask my youngest I'm worried that, in setting me up on it  that somehow she & her elder sister would be able to access stuff that I would not want them to read. Any advice would be welcome especially as I'm not that computer literate - used to ask Pete for such advice but can't now.

Pete still struggling in rehab.Not yet mobile although having phsysio everyday. He's getting very frustrated as he is reliant so much on others to do things for him. I don't think he quite appreciated that his recovery period would be longer than last time even though I tried to say that this was likely. Would add that he also had huge amount of swelling & puffiness after his op but must say that same thing happened first time round so was expecting it.  Haven't been on site much as too knackered most days due to hospital visiting but as always you all are never far from my thoughts.Was sorry to read that there are a few struggling even more than usual at the moment. BTs are such a cruel illness to have.

Take care everyone

Sue xx

Good morning all,

I am still getting spam/crap postings even after deleting my profile. I don't even want a wall!!

TO ADMIN,   HOW IS ALL THIS CRAP GETTING THROUGH AND WHY DO WE HAVE TO HAVE A WALL?

If this persists, I will have to sign out and delete my account altogether.

MartynXXXX

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Martyn

I can't believe you're getting, as you quite rightly say, CRAP. We've all come onto this site to talk about things that are relevant to us...that experience of living with BT. They NEED TO SORT IT OUT.

I think admin are forgetting that this thread is a LIFELINE to those using it....think there may be a mass exodus.

Love  to you both

PEABS XXX

Sue (toy), I've sent you a friend request (I think) then we might be able to exchange private mails about setting up fb.

You can keep it very private if you set it up defensively - with a dedicated email address for example rather than your normal one. If you know a small person I bet they can help you set up an account. Amazingly, it's easier to figure out than this!!!

Hope Pete recovers more and more very soon and that you get some sleep too.

CHxx

SusieQ and Postmark

Thanks for your replies - sorry its taken a while.to respond.  Michelle went into hospital last Tuesday and had her chemo that evening.  On the Wednesday night she had 2 pretty bad seisures which caused them to ring me at 6am in the morning asking me to come to hospital "quickly".  God was that a fright.  However she did recover and seems OK now.  Hopefully she will be out today, so she can have at least a week at home before starting round 2.

The view of Michelle's prognosois is "a few good months" of quality life after the chemo.  There may be the option for RT but they have so little experience of treating lepto meningeal cancer as well as brain tumours together so its very hit and miss.  I have had 2nd and 3rd opinions and have been in e-mail exchanges with some US institutions (AdvancedBrainMets.org) sharing Michelle's file and scans, and all have the same view unfortunately.  Once the two co-exist its a waiting game. 

So I am really hoping the chemo works and we do indeed get "a few good months".

Keep you posted

Steve

Hi all,

I would like to let you know that we received a letter from Doreen's consultant today telling us that the result of her recent scan shows NO evidence of tumour recurrence. I will not go into anymore detail due to those cretins who seem to be hovering around this site, but obviously very welcome news.

Hi Steve, Everything crossed for Michelle and you.

Best wishes to all,

Martyn.

Martyn

Thats great news for Doreen - brilliant. 

Thanks for the wishes

Steve

Hi Martyn, thats great news about Doreen, its such a shame what is happening on here, hope you all don't desert it too much as i don't use facebook and would still like to keep in touch with you all.X

Susan,  sorry to hear of Paul's recurrence, keep strong and thinking of you both. X

MollieXX

Great news for you and Doreen! Waiting for results is always such a worry. So pleased for you both