We Talk Brain Tumours

Martyn-Thank you I didint feel a thing! Thats the benefit of your experience I guess? I was looking in the wrong place all the time. Could you tell me how to return the compliment and comment on yours? x

If you click on mine or any other user's name you will enter their profile.  Scroll to the bottom and you have found the wall. Just be gentle!  XX

But of course. Thanks for initiating me. x x

Hi All

Never seem to get on until late. Have promised myself an early night (?!?) so this will be a quick one.

Pete has been moved ( Tues) to a smaller hospital for his rehabilitation & is much happier. For a start the food is more to his liking & they have a more personal touch so so far so good. Mandy thanks for your post. I think I may have given the impression that he wasn't getting any physio beforehand in the hospital where they performed the 2nd debaulk. He was but it wasn't seeming to have any impact. He is now receiving more in the new place but at the moment he is still needing to be hoisted out of bed etc but today when I visited there was a definate improvement in his left leg as he could move it a little bit. Oh the joy of seeing him do this & it has made such a difference to Pete's morale. Glad to read that Abbi has settled in well & that she has other students around her that will be understanding of her situation. I don't think that the same applies to Hannah's flatmates-at least she's not mentioned anything of the sort but she seems to be enjoying their company as well as all of the activities in freshers week.Strange I haven't yet heard how the lectures are going!!!!!

Susan 206 Hope the op goes well for Paul. Always these events are nerve racking.

CH Sorry to read that you have lost your job You said it so matter of factly but it must be strange having worked for them for 25 years. Every cloud has a silver lining as they say & now at least you will be able to devote all your time to being with P. 

I have to confess I am very confused about the talk of walls........... I simply don't understand this new site.It appears that I've managed to somehow delete all of my profile, I think it was when I was attempting to update it but now I can't devote any time in trying to work it all out. Any news on where the original thread has gone? 

For all those awaitng scan results hope the news is good.

Take care & Good night all...off now for my early night but probably won't sleep.

Sue xx

Suetoy, only too please to have misunderstood!  Glad to hear P is feeling better with himself anyway.  My P was moved to a rehab place - intensive treatment - the best - so my hopes are up that your P will get mobile very soon - in a way I think it's good he is so frustrated as he can take all that energy into getting moving.  My P and I were given exercises from the beginning to practice away from therapy - core exercises really - sit ups (using only the head), pelvic tilts and a good one for walking was to bend the knees up move the leg outwards and pull inwards - P needed a lot of help in the early stages as he didn't have the control, but it came - I know some people didn't get these exercises as support was needed - but it also helped fill our days doing extra therapy and I now know it meant the therapists could see how determined we both were which spurred them on when things were difficult for P.  You can tell I feel very passionately about all this, so sorry to go on!       Oh, you're right, no lectures - too busy being cowgirls, purple, neon or watching Blazin something or others??!!  I think it's good for them to be able to have some kind of normality and in actual fact has been a focus for me to keep them going so they could get to uni's - Josh's turn this time - ucas personal statement written - though not so personal, more jumping through the hoops to get on the course!  He needs spoonfeeding though - just says I'll go wherever you want me to go - I don't think that's the attitude!!

Susan206 - worrying indeed - but as you say no news is good news so hopefully (strange when we say hopefully for surgery isn't it?) all will go ahead for next week - and that Paul won't be in too long.  xx

I think Martyn must be worn out with amount of inititating he has done over walls!!!

P very poorly yesterday so hoping for a good one today!

See you and take care - CH you'll soon have every day to have long lie-ins instead of listening for the morning alarm - lots of BB walking to be had and no excuses for a lack of training!  xxxx

hi all,  is it possible to hide your profile like you could on the old site?

Hope everyone is doing ok, Martyn hopefully no news is good news regarding Doreen's results.  Take careXX

MollieXX

Not sure if this is it or not....but on your home page there is a tab by your profile for Settings, one of the first questions is

display in members list...yes or no

Thats about all I could find, we didn't have the hide option on What Now but it might be worth a try by clicking no for a bit......can always reverse it.

Hi Everyone,

Have noticed that posts are few and far between on this thread now, is this because of the new site. I have e-mailed admin re the old WTBT but don't seem to know what happened to it. A lot of people who were posting there seem to have disappeared. Really miss the posts,thinking of you Postmark, Crazy Horse, Mandy and many others.

Paul is very unwell now, in bed all the time and sleeping most of the day. What a truly horrible disease this is.

Jeanxxx

Hi all,

Just wondering if anyone has heard of pseudo progression?

We were told a couple of weeks ago that my daughter's MRI showed that the tumour had progressed and so she was taken off the TMZ and started on PCV as it may respond better to this. After a second opinion, they have mentioned pseudo progression, meaning that the MRI cannot differentiate between real tumour progression and possible post radio and TMZ 'inflamation' and that it may be several months before we know if itis progression or not. Anyone else heard of this?

She also has joint pain - ankles and knees. I think PEABS has mentioned this prob. It seems to be a mystery what is causing this so MY daughter is on Sustained release Morphine now.

Mummaggie, as confusing as the pseudo progression sounds, it sounds a lot more promising than "actual progression".  If it is not actually progressed, how do they know if the TMZ wasn't helping? will they reassess her treatment again or just going ahead with PCV now?

Much love and strength to you, Bigsis & Littlesis.

Debs xxx