We Talk Brain Tumours

Robin, seemed ok to me - I've trouble using daughter number two's new whizzy laptop bought ready for uni next week - just that it's so sensitive I keep loosing text and zooming in and out without knowing how I'm doing it so goodness knows what I'd be like on an iphone - can just about car block on your toy!

Good morning all,

Still no sign of the original yet?

Hi Robin,

Glad you found us, best wishes to Jan.

My laptop's power is still measured ih Therms!

Actually the combination of Blonde and whizzy laptop hardly seem compatible!

Best wishes to all,

Martyn

I like Debs am from what now, but look forward to joining you all!

xxxx

I like Debs am from what now, look forward to joining you all.

xxxx

Good morning all,

Like Martyn still looking forward the full thread being reinstated.

It's a nice autumnal day here. Am planning to tidy up more of the front garden. To the hospital on Friday for bloodtests then back to work next week.

Hello Classyriojax2.

Hope everyone is as well as can be.

Love,

CHxx

Phew - found you all at last! Well I have had a hard week. My stepdad went into hospital last Wednesday to have his op for colon cancer. He's still there as there's a few complications with a catheter, he hasn't "opened his bowels" yet and he's diabetic and the 2 days withot eating has really mucked up his blood sugars and they're taking a while to stabilise to an acceptable level. So my sister and I managed to persuade my mum to let us stay while he was in hospital. She is doing well physically and in some ways her husbands illness has made her do things that she wouldn't nomally do, so physically she's doing quite well. BUt my sister spent 2 days with her and came away thoroughly drained, by the end of my 2nd day I was in complete despair. She has become so negative it's not true. She ca't say a positive thing about anyone (anyone who has volunteered to help or drive to the hospital is an interfering so-and-so, or only wants to do it so they can gossip around the village etc), and she is just dredging up every negative thing that ever happened to her. She is convinced that her mother didn't want her and that her brother was his favourite and she constantly talks about being bullied at school. It is just awful to listen to her without getting angry. She was adamant that I wasn't to stay any longer, so with great reluctance i left her yesterday and she's now had her first night alone since she was diagnosed. I can honestly say that this all more upsetting than when she was first diagnosed.

But, it's nice to see you all again. I could have done with being able to post on here last week!!

Hi Sally,

Glad to see you've made it to the hopefully temporary thread.

Welcome Classy lady,

I've briefly read your profile and wondered if you knew there was also a thread under Chat discussions called, Parents of Children with Brain Tumours?

I've lost count of the number of folk who were diagnosed after raising the optician's concern, the same applied to us.

Our resident blond, MandyR's husband's problems started around the optic region, she usually has a lie in after late nights on the town, but she may be along soon and is a mine of information.

Martyn,

Good afternoon everyone

Classyrio- I read with sadness your "story" and everything you and your family have been through.  I too post on the Parents of Children with Brain Tumours page although am new to all of it anyway!  I hope you find this and the other page as good as the what now pages.

I am trying to find someone... anyone.... who has not had a firm diagnosis of their BT - particularly with regard to grading.  Does anyone know of anyone else??  How can this be??? All I know is that my daughter has Astrocytoma in/around the hypothalamus, I am SO frustrated!!

Take care all x

Hi Everyone - good to see that my cheeky friend, Martyn, is keeping up with the cheeky, though not quite so rude (boohoo) banter!  I'll be getting my own back some time soon so watch out!  Our new friends will soon start to realise that Martyn is employed not only as our driver but the as the one who will make you smile time and time again - and we know we need it!

Hi Classyriojax - I like Martyn's version - Classy Lady - better than my blondie, and it's not meant as complimentary!  You know you're welcome when Martyn's found a suitable nick name huh?  CH, SusiiQ and I believe Mollie and others will be mentioned as waitresses somewhere along our train as we've come to call in on Share - hopefully Martyn or someone will post the train story on here so you will understand where some of these lighthearted comments come from.  Though my husband's tumour is different from what you describe - his experiences are similar from reading your profile - a loss of vision, an op that went wrong that closed one eye and then complications that rendered him blind (though he does have limited vision) and the expectancy that he will ultimately go blind as the tumour is squashing the optic nerve and is around the chiasma, amongst other places.  So if you would like to know if I know anything in particular please feel free to ask.

We have a lot to get to know about how each of the threads worked I think?

Hi Sallye - glad you finally found us - we're all struggling - but I suppose we've got to move with the times!  Your post is sad - but you know you have to keep remembering the person your mum is - remember the BT will be doing it's worst sometimes, so this isn't the mum you know and love, it's the affect of the BT - also she has to adjust to the awful news of not only herself but of your dad - it can't be easy - and it can't be easy for you to witness her behaviour - keep strong and just be there for her - it is maybe the only thing you can do for her right now.  A lack of control over your own body must be a dreadful thing it's no wonder negative behaviours come out - hopefully things will improve for you xxx

Well I'm going right now - my mind of info is awash with other problems - like dashing out to refil the empty coffee jar whilst P is asleep.  The speech therapist has rung and after having done further tests is concerned that P is obviously aspirating - not really a shock but more of a definite diagnosis - I feel like I've come to a point where I am accepting bad news after bad news like it's ok???

See you xxxxxx

Hello Nerak,

On the old thread there were one or two without firm gradings I think - or who had gradings reassessed. I think it often comes about because some bt (I'm talking about gbm's so grade 4 astrocytomas) start of as such but others progress to that grade after being lower grades.

Cells of more than one grade  can co-exist within a tumour for a while. Sad to say it can sometimes hinders diagnosis  and survival statistics as some tumours have to be reclassified.

Also, some tumours are rather concentrated into a ball but some are very much more diffuse and that can make getting tissue difficult. In his recent operation, it was clear that what we can see as tumour on an MRI cannot be distinguished from normal brain cells by the human eye.

Not sure if this helps at all. Probably you are aware of all this already?

Best wishes,

CHxx