We Talk Brain Tumours

Hi Sarah,

I've just read your profile and you certainly have been through it, thanks for joining us.  You say you plucked up the courage to post a message here!   I would say you have courage in abundance

                                                                                                                                                            This thread is starting to return to something like it's original solidarity after it's relaunch within the new site, despite much indifference from the administrators.  I am sure you will be a great asset to all on here.  Please read some of our profiles and Miggins will be round soon with the tea and cakes, she has exceedingly good buns apparently!

Best wishes to you,

Martyn XXXX

Loopylu-thank you so much for thinking of us. Could certainly do with some good luck right now. Things get tougher by the day at the mo and can only think of my hubbys scan sitting there maybe with some answer to something that may give some respite-dont think I will last past Monday without asking his CNS Nurse to try to get a peep at the scan.

Martyn-I hope you can substansiate both those claims you made-size is in the eye of the beholder, and as for Miggins buns?  Hope Doreen is fairing well x x

Thank you for the warm welcome, im looking forward to getting to know you all better!

Love and Peace

Indie x

Hello,

My Dad was diagnosed with (initially) a grade 3 Anaplastic astrocytoma in Feb this year. He had surgery and radiotherapy, and made a fairly good, if very slow, recovery. However the symptoms have returned and he is back on steroids, but continuing to deteriorate with left sided weakness, loss of balance, emotional lability.

The hospital did another scan - but couldn't decide whether is was due to radiotherapy necrosis (oncologist) or a grade 4 GBM (neurologist). Dad doesn't want surgery again - I have no idea how long he is likely to live. Nor what emotional and mental changes are likely...

I feel very 'lost'.

Hello Socrates,

Glad you found your way here. I know it's easy to fear the worst but a lot of people on here have experienced problems after rt. It can be the treatment doing it's work and can give people a dip that can resemble a worsening of the situation. That is unfortunately not always the case.

Do the doctors have any plans to treat your Dad with chemotherapy? Maybe Temodal or another chemotherapy? Or otherwise to try to find out what is happening?

Some people need to know everything (I am one of those) and so speak to the doctors themselves and research on the internet - if you do that take care, many site give statistics that do not reflect how one individual will do.
And then some people prefer to take each day at a time. Feeling lost and out of control is just completely normal but maybe you might try to think what youreally want to know - and of course what your Dad wants to know.

The emotional and mental changes can be related to the position of the tumour. Try not to fear the worst as many people suffer few changes - though it is also true that some do.

I know you will find such support and good information here. The best bit of info I was given here was to tell your loved one every day that you love them - in whatever way is your way.

Best wishes,

Miggins (CH)

Y&Y - I can't imagine what the waiting must do to you, we never had to deal with that in Mum's case.  The support you all provide to each other on this thread is staggering and must be invaluable at such times, (all the time).

Martyn - they're not Terry's, they're mine, but I'll make an exception for the driver of this train, (and all his passengers and crew!)

Leah

xxxx

Loopylu-yes you are right the support on this thread is so comforting. I felt all goosebumpy when i saw you had bothered to 'pop over' with your thoughts for us. Thank you x

CH - I too need to know everything, it's how I gain a (spurious) sense of control over situations...

Dad does not want any more radiotherapy, nor does he want chemo. He cannot face any more, and is coming back to the UK to die at 'home'

This has all sorts of practical ramifications that we now have to deal with. I need to talk to the benefits people and find out what (if any) help he will get.

One day at a time...

Socrates, You will probably find helpful people at your local hospice (if you father can accept that) who can perhaps give you initial directions about what help is available. I also live abroad but I'm sure others who post here can give some better insight into the UK situation and how to find your way around it.
I hope you keep posting here, many people have been, or are on the same road and can give support.

Miggins xx

Good morning to all,

Leah, let's ignore that Terry and just keep them between ourselves eh?  Mind you Miggins has a habit of dropping them and saying that it is bad luck if you don't then eat every other segment, but she doesn't stop after one circuit, really.  Last week she set a personal record and left a TCO unwrapped for 3 whole hours, I jest not do I M?

Hi Socrates,

My wife Doreen was diagnosed with an anaplastic astrocytoma in January 2003, she had a debaulk and then the customary radiotherapy x 30.  Her prognosis was approximately 2 years.  She is still here issuing me with my daily chores. We have our few niggles, but things aren't too bad.  Please have a look at mine and others profiles and it will give you some insight into our situations.

How true about the support and warm on this thread.  Through Doreen's misfortune we have had the privilege to meet some absolutely wonderful people here.  She'll hit me for saying this, but our Miggins (CH), the first to offer support yesterday, only lost her own beloved partner W in the last 3 weeks and here she is, back supporting us all. I love her.

Best wishes to you all,

Martyn XXXX