We Talk Brain Tumours

Hi again, can't work out how to edit, but I've just re-read your bio Susan, and see Paul has been up to neuro before x

Hi Ali,

Click on the  More  tab next to the Reply one and the Edit is on the drop down menu.

We were at the MRI department at QMC yesterday and treated every well, we even went in on time!

XXXX

Thanks Martyn!

And wow- look at us with our positive stories about the Queen's lol :) makes a change!

When will Doreen get her results?

Mum's up at City in a couple of weeks to get her scans back.

Love Ali x

Ali,

The consultant will ring us although I hope it's not too quickly!

I hope Mum's will be good.

See you,

Love to both XXXX

yeah, know what you mean.  Keeping everything crossed for you xxxx

Back to page 1!

Thomas (Macmillan staff member) any news yet of the old WTBT thread? Thanks.

Hope this is a good autumnal day for all reading.

Love,

CHxx

Evening all,

Ali and Martyn, yes Paul has been to QMC before but not for about 18 months. Our local hospital in Burton doesn't have a neuro unit so after the first scan showed a shadow on the brain, Paul was referred to QMC. After the diagnosis of GBM with no surgery possible, he was referred to Derby for RT and chemo. So now we are back to QMC again. I had no complaints about how he was treated when he was in for the biopsy. Paul hated every minute of it but that's just him, always a bolshy so and so! He hates people fussing over him, hates the food, hates the fact that he can't have a smoke whenever he wants...Hopefully he won't be in for more than a few days but I intend to try to find out more when we see the surgeon,

Hope everyone has had a peaceful weekend.

xxx

Evening All

Haven't had chance to visit site much, too tired driving back & forward to the hospital. Now taking food into Pete as he has really taken against the NHS food & I was worried he would not be strong enough when they eventually try & get him walking. The longer the extreme weakness in his left leg & left arm goes on, the more worried I am that it will not improve & although Pete hasn't said as much I know he is concerned about it too. He's not yet in the rehab place so hopefully when he is there they will be able to help him more than the hospital can. At the moment he is feeling helpless & totally dependent on others & it's driving him crazy. Not nice for anyone, let alone someone as fiercely independent as Pete. Gradually over the months of his illness he has had to come to terms with the fact that he needs more & more help with everyday living but every time it hurts him big time to admit it.  How I hate what it is doing to my man...........

Hannah has settled well in Uni, it is strange not having her around & hard for her to go away when her Dads is so ill but she's not a million miles away. Her sister is missing her & said the other day that it was funny just having the two of us in the house...............later on that evening when I went to bed I cried as I know that most likely in the not too distant future that it will be a permanent state of affairs.  In the meantime I STILL have a log cabin to order & then build.  Muddles everywhere & oh heck no time to sort anything out!!!  

Hope everyone had as good a weekend as possible with their loved ones. Take care

Sue xx 

Martyn

Thanks very much for the reply.  We have since been to Harley Street for a second opinion.  On the positive side they are very supportive of the treament being proposed by The Christie and the downside there is nothing they can add that might improve Michelle's prognosis. 

On the pain, she is on 16mg of Dex which I believe is about a much as they dare go.  On top of that she has access to high strength codiene and liquid morphine (although she has not yet ventured onto the Morphine - too scared I think at this stage so I am not pushing her).

So we start chemo (high dose methatrexate) next Tuesday and see where that takes us.  I am encouraged by the upbeat nature of this thread.  It's great that people can see the "glass half full" side of life's challenges despite all the bad news that keeps coming through.  I will take that with me onto this journey into the unknown and hope I can offer Michelle the same encouragement on her much harder journey.

Thanks - Steve (and Michelle)

Hi Steve,

My husband, Col, had high dose Methotrexate this time last year for a primary brain tumour.  He tolerated it very well apart from sickness from treatment 3 onwards although by the end of the 6 treatments he was even being sick before it started (I think his body knew what was coming!).  The good news was that it shrunk his tumour from the size of a golf ball to less that the size of a pea & he is now back at work full time.  I know Michelle's situation is slightly different, but just wanted you to know of a positive outcome of the treatment.

Best wishes

SusiiQxxxx (at home waiting for Tamiflu & going to sign off now as feeling awful)