We Talk Brain Tumours

Hiya

Mum is doing ok, no real change to be honest, which is both good and bad I suppose.  She is still pretty active and getting out and about a lot, although still gets very tired and is still hair-less which I think is starting to get her down a bit now, but she has started working in a charity shop 4 hrs a week and is starting to consider doing a few paid hours somewhere/doing something.  So all is still going in a positive direction.

Sorry to hear about your eyesight Jill, although at least with the studying over there is less strain needed on the eyes I imagine.  Do you have plans to come over to the UK?

Love to you and Doreen, MArtyn- how are things at the moment?

Best wishes and hugs sent to everyone

love Ali x 

Ali,  great to hear that Hazel remains positive, give her our love. XXXX   I'll send you a personal message about Doreen's current situation.

Jill,  please make it quite plain that it was just you ladies who found the Swedish blokes dishy! XXXX

Ali, I'm impressed your mom is so active.  Sue is basically bedridden now.  Even before her most recent fall and break, she was so weak she rarely managed to do much more than her morning ablutions and then she was tuckered for the rest of the day.  Her bedroom has been rearranged so her bed now faces the window and her new hobby is imagining shapes from the clouds.  That girl is always busy!  So I'm very glad to hear your dear mum is managing to keep mobile.

Martyn, I didn't mean to infer that you fancied the dishy Swedes beside us and I'm sure that no one would draw that conclusion from you merely sitting on that big fellas knee. It's not as though you hugged him or anything, especially not with Doreen watching!  Please send her my love and keep a big chunk for you too.  I don't know how you do the private messaging anymore as so much has changed on this website.

Love to all you lovely people, readers and posters alike.

Jill.

Hi Jill,

Good to hear that Sue is still (relatively) ok and although Jim has not been well, he is on the road to recovery.  xxx

I hear what you say about carers' health, having already been in hospital for operations twice myself this year, I've commented before abot how weird it felt to have Col sitting beside my bedside instead of the other way round & when my second op didn't go as planned, he told me afterwards how helpless & worried he felt when I didn't come back on time, especially as a colleague's wife had almost died after a similar operation.  I think he finally realised what it must have been like to go through his 6 months of treatment, even though I was only in for 4 days!

Ann, lovely to hear from you again, even though things are not going so well for your mum  - sending you love & hugs xxx

Martyn - I was just scrolling through my 'friends' list & can't believe you're not on it!!!  I think probably it got omitted after the FB link-up!.  I've rectified this (but obviously, if you don't want to be friends with this 'Nuneaton Nutter x2' then don't accept!)  xxx to you & Doreen

To everyone else, sending you love, hugs & strength to get through each day xxx

Hi All,

I ;m new on this forum and really not sure what the protocol is?? lol

You all seem to know each other so well, and I hope to join your midst.

I have very recently been diagnosed with anaplastic astrocytoma grade 3. I have had a biopsy as growth is in a difficult area, so they couldn't get it all and I believe they managed to remove maybe half of the 'sugar cube' that was believed to be in there.  I have postponed radiotherapy so that I can go on holiday with my family, (didn't fancy waiting til I felt bad and possibly had no hair lol) but will be having 6 weeks worth starting just after bank hol monday.

At the moment I feel really positive, but there are times when the negative thoughts creep in.

Is it right that I have been given no timescales? All I have been told is that if it grows to 2 - 21/2 'sugar cubes' I will start to get serious problems with my speech and lose the use of my right side.

Got lots to look forward to, party on sunday mine and dads combined, races at York weekend after, as well as holiday but still have a cloud over everything.

I just need a bit of guidance I think, from people who know.

Hoping you can help

Angie

Hi Angie,  sorry you have to be here, but welcome anyway.  I haven't any time just now, much to do prior to evening visits etc, but will try and get back later.  Have a look at my profile as my wife also has a grade 3 astrocytoma and is in her left temporal.  Hopefully someone else will be along shortly to help answer some of your questions and concerns.

Bye for now, Martyn.

Hi Angie,  I'm really sorry that no one else has responded to you, this thread used to be such a great support. The following is a very supportive site which will be of benefit to you. 

      http://www.btbuddies.org.uk

Please send me a personnal message if you want to ask me any questions and I will respond as soon as possible.  Every good wish, Martyn.

Sadly I post to say another huge loss as Peab's beloved daughter lost her fight for life - I believe a fight so bravely fought by all the family.  I am sure those of you who know Peabs will want to send on your condolences. xx

Hello Angie,

Your protocol is just fine. :)  I'm sorry you find yourself writing here but I hope you get some answers as best as people can.

It's quiet on here at the moment. There are three active bt threads and there has been a very sad loss on one of the other threads as Mandy mentions below. But I'm sure some of the others will be along soon to give you more insight. This is a very useful site so keep reading.

Time scales and predictions are so hard with bt's. They are so many variables from the grade, position, person's health, age - really the factors go on and on.
Pressure from any swelling can cause symptoms from areas not directly related to the site but that is helped quickly with steroids.

I'm not helping much am I? Are you having chemotherapy? There is a faily new chemotherapy Temodal, a pill that you take at home and often there are few of the symptoms usually associated with chemotherapy. It's well tolerated and can be very effective.

And many people are told that if they lose their hair with rt it won't grow back but it's most people's experience that it does - often another colour and often curly. Temodal doesn't cause hairloss.

You are doing the very best thing in enjoying yourself. We none of us know what is going to happen or when - we just like to think we do!
Best wishes,
CHxx

Hi Angie - it is a bit quiet here at the moment!  I usually post on a different thread, mainly because its my daughter who has a bt not me, so post on a Parents forum, however, it is a community here where everyone is welcome and supported and don't worry about protocol, there isnt any as such! 

As far as I cant tell, not many people are given timescales and in my experience that isnt a bad thing.  There are so many anomolies to consider with brain tumours, type, grade, position, age of patient, speed of growth (something I struggle to get my head around is that even though 2 people can have the same Grade tumour they can grow at different rates) and also each persons reactions can be different, both in symptoms and in reaction to treatment, there isnt enough understanding to give definitive prognosis.  what they have told you is what they would expect to see should your tumour grow.  There are many positive 'survivor' stories of people who beat their odds. 

It is possibly one of the worst things to try and live with, but live you must, to the full.... and I can tell you are doing just that with the plans you have already, I hope you have a great party!! 

Best wishes and if I can help with anything please let me know

xxx