We Talk Brain Tumours

FormerMember
FormerMember
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Hi everyone

I am just trying to navigate myself around the site.  Still struggling, but thought I would try and make a temporary place for the WTBT folk as we are all wandering round like lost souls at the moment- don't know if this will work- but worth a shot while Mac try and resurrect the old thread

Love Ali xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Lisa,

    I'm very sorry to hear about your Mum's diagnosis. Bts are frightening things and so coping with them and the treatment alone is enough to make anyone feel down. Also the position of the tumour can sometimes have an effect on a persons' mood or outlook. It's always hard to deal with but many people on this board try to think that short fuses are caused by the bt, not your Mum.

    Do you know what sort of bt your Mum has. The sort of bt and grade will make a difference to what treatment your Mum is given.

    Best wishes,

    CHxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Lisa,

    Was the brain tumour primary and it spread to the body or the other way round as I believe its much rarer the first way round and usually spreads to the spine - of course Cancer doesn't always behave the way it should, thats one thing we all learn quickly!

    I had my surgery in Jan and had a total resection but steroids after Radiotherapy made me very moody and just dealing with the fact I won't live to see my kids grow up, marry or have kids of their own is enough to set me off on one!

    I hope they can offer your Mum some treatment that will improve her quality of life for as long as possible.

    Good luck and strength to you all.

  • FormerMember
    FormerMember in reply to FormerMember

    hi all

    there a lady called chickenlips got a little girl with a brain tumor she came on peabs but peabs away at the moment so i told  her to have a look in here hope that ok i would have bumped but dont how to do it

    hi debs i do read your blogs i love the one about the frogs leaving the pond

    love to all take care janice xxxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi CH thanks for the welcome back.

    I'm am sorry to read the lasted sad stories it breaks my heart to read them.

    Fee, I can so identify with what is happening to your mum as my brother who has also has GBM was taken into hospital in July this year they removed a tumour which was the size of an orange.  After the op like your mum, they are the same age by the way, he seemed to make a remarkable recovery, probably because there was less pressure on the brain.  Just before he was going to receive radium treatment he went down hill rapidly, however they juggled with his pills and there seemed to be some slight improvement but said that they would not give any radium treatment as they felt that his quality of life would suffer.

    Everyone here Fee will give you great and loving support whilst you travel on this very sad part of your mums  journey through life.

    An update on my brother, he was taken back into hospital last week as his feet had swollen up badly, his cognative skills have now just about gone altogether. He is now unable to use his legs or arms.  I feel like that time is running out very quickly and his last station is coming into view.

    I am still finding it very hard to come to terms with and find myself crying at the drop of a hat.  My sister in law has been keeping me updated and I so wished I had of been able to go to Australia to see him last time, but it was not to be.

    There was some nice news for my brother the Australian Flying Association have for the first time presented him or anyone for that matter, an award for his dedication and service to the receational flying sector I was so proud and happy for him especially as he was able to understand as I know that it meant a lot to him as flying and instructing people was his life,

    Last week I was watching a programme about Chris O'Brien who was the top Head and Neck Cancer Specialist at a hospital in Sydney.  He was amazing man who sadly became a patient in the same hospital where he worked as he also developed a GBM tumour, he battled from 2006 until 2008 when sadly he died.  Before he died he raised millions of $ for specialist cancer centers and also wrote a book called Never say Die.  He was asked if he was afraid of death and he said no as it would just be like going to sleep. One day I will get the book and read it but don't feel able to at the moment.

    Martyn I was so pleasd to read that Doreens scans were good.

    Sorry, I think I have rambled on too much x

     

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Fee,

    Have just read your post about your mother and wanted to reply.My husband has a gbm4 diagnosed Dec 08 which was inoperable. Seizures have been a constant  presence and difficult to control.However,what I wanted to say is that the was on Tegretol for while and had very similar symptons to your mums.These dramatically improved when the consultant at the hospice found evidence from research that Tegretol can actually inhibit the effectiveness of the Dexamethasone in effect stopping it from working properly.When the anticonvulsants were changed to Keppra and Lamotrogine things were much better.

    My husband is now very ill  and I fear coming to the end of our journey,but I hope our experience is helpful.

    Thinking of you and wishing you well.

    Jean x

     

     

  • FormerMember
    FormerMember in reply to FormerMember

    Just hoping that Suetoy is ok - have pm'd you x

  • FormerMember
    FormerMember in reply to FormerMember

    Hi All

    Please can anyone who hasnt signed (and wants to) sign up for more resaerch into brain tumours

    Hannah has even contacted the PM! http://petitions.number10.gov.uk/Braintumours/

    Thanks and love to all xx Dianne J x

  • FormerMember
    FormerMember in reply to FormerMember

    Hello everyone..

    wondered if anyone would mind sending mac request for FB.. will  be away half term and can at least use my phone. 

    Annie is 13 months thru treatment and sooo well is unbelievable, considering docs said she shouldnt be here and although we have so much hope and positivity i'm actually finding it harder !!

    I here everyones words pounding thru my head , like an echo of all my thoughts!!!

    think its the only thing thats keeping me sane to know that none of my thoughts are irrational .

    x x

  • FormerMember
    FormerMember in reply to FormerMember

    Hello Lynn,

    Good to hear that Annie is doing so well. It must be very hard for you.

    I was wondering if you have seen the thread that is for parents of children with a bt.

    I have to admit can't find that thread at the moment - but I can't find many things now on Mac.  I wondered if that might be a more helpful place for you as the special issues of having an ill child are discussed there.

    I'm sorry I can't find it to give you the link but I'm sure someone will be along soon who could tel you where to find that discussion if  you think it would help.

    Best wishes,

    CH

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you CH....  i have found that thread but find myself posting anywhere that mentions BT's !!! i find myself going back and forwards wondering if i'm on the same forum ...(not good when youre blonde...and a hairdresser !!!!!!!) 

    I wasnt used to the old site , maybe thats fortunate for me??  It has been Peabs who has highlighted the benefit of talking to you all...and just as i'm finding my way i'll be away for half term..

    thank you for that anyway...hope to be in touch soon x