We Talk Brain Tumours

Hi, Martyn a source of information as always, thanks for your tips.

Debs, lucky you bananas and chocolate delicious separate or together!

Take care

MollieXX

Hi Guys,

Glad to see more people are finding us at last.  Well done Mandy for the kick up the b*tt to MacMillan - maybe they'll start to listen to all the feedback soon??

Feeling a bit down today - heard yesterday that a lovely friend had died from cancer - originally of the pancreas, but had spread throughout spine / to brain by end.  She was the same age as Col and such a fighter.  It's just not fair.  Feel so sorry for her husband & 2 daughters.  Just can't believe that she's not here anymore.

Thanks Jo & CH, very helpful

Susii, sorry you have had bad news about your friend, my thoughts are with you x

X

Hello all,

Mollie, Paul was found to have a folic acid deficiency earlier this year, several months after completing all the RT and TMZ. The GP prescribed a course of tablets which seemed the easiest way of dealing with it. I was surprised at the time as we eat lots of vegetables, particularly leafy greens. I could only assume it was a consequence of the chemo.

Paul is doing quite well after his surgery on Monday, the left side weakness is much more pronounced but I am hoping it will get better once everything settles down. I had a minor panic this late this afternoon when in the space of about an hour he developed a weird puffy swelling in the inner corners of both eyes and on his forehead between his eyes. His right eye closed up almost completely as on the side, the eyelid was swollen too. The surgery was on the right side. I assumed it was something connected with the surgery so as instructed I called the Neuro-oncology nurse at the QMC but just got an answering machine. They had told me that if I anything worrying happened out of normal hours, I should call 999. That seemed a bit extreme so I called the GP and they told me to bring him over immediately. The GP thought at first that it might be conjunctivitis, which I thought odd and she then decided that it was probably caused by fluid draining down towards the eyes. She prescribed eye drops called fuci something which I thought was for eye infections so I am puzzled now as to whether it is connected with the surgery or not.

Well we get the results of the lab tests tomorrow. The Consultant agreed that we don't have to make the journey to Nottingham so he or his Registrar will phone us in the morning. I suppose it might just turn out to be benign but based on what the Consultant said last week about the possibility of GBM cells "tracking" along the site of a biopsy, I am realistic about what to expect. We have already been told that RT can't be given again because the new tumour was directly above the site of the original but if it was another GBM, chemo might be possible. I will see what tomorrow brings.

Love to all,

xxx

Hi Susan - worrying time I know for you.

Although I think you should still continue to find out I wanted to say that after P's surgery he looked ok but in the following days in HDU his forehead swelled and this tracted down to his eyes so that eventually he looked like he'd been in the ring with Mike Tyson - both eyes were completely swollen and closed - it was really frightening as we hadn't been told of this.  We had been warned about 'black eyes' but P didn't have any bruising at all, just the swelling - much much later I realised it was the fluid from op without the blood which had been drained away.  So maybe this is usual for ops in certain positions - I just wanted to try and reassure you for the time being.  I hope Paul continues to improve with his movement - like CH has said a few times recently it seems that subsequent ops take them a lot longer to recover from, maybe this is normal too though it would be good if we were advised this beforehand hey?

I hope the news tomorrow is as good as it can get - take care xx

Hi Folks,

Finally tracked down what happened to the thread, and on reading back, I too want to thank Mandy for talking to Mac Admin about the new site, and hopefully getting the old posts transferred over.  There is al lot of useful material and advice and it would be awful to lose it.

It is coming up the the first year anniversary of when I lost my dear husband, Bob to GBM.  It has been a tough year, although I feel light at the end of the tunnel now.  I will be eternally grateful to all those who helped us through, via this site.   Many, are still, and will remain, good friends.

Love to all,

Ann x

Hi Susan,

I came home less 24 hours after brain surgery and no one warned me about the swelling.  A day or so later I woke with the side of the face I had been lying all on puffed up..during the day the swelling gradually took over my face and eyes were almost closed.......so puffy I couldn't even put my glasses on.

Hubby got worried and made me phone the ward....where I was told that the swelling normally appears during recovery time in hospital and its explained but I went home so fast.....(they let me I didn't discharge myself LOL).  Was told the swelling could worsen upto 10 days but it didn't last anywhere near that long thankfully!

Hope your husband continues to recover well.

Susan, hope things go well regarding results today, fingers crossed for you both.  Take careXX

MollieXX

Thank you Mandy, Debs and Mollie. The neuro nurse from QMC called back at 8am and explained that the swelling and puffiness was normal. It would have been nice if someone at the hospital had warned us about, though. Paul looked even worse this morning but said that he feels stronger physically.

Optimism has just taken another kicking, sadly. The Consultant called about an hour ago and told us the news was not good. The tumour was GBM again. I can't say in all honesty that I was surprised to hear this but I had been secretly hoping that 2009 would give me some good news at last. The NS said he will ask the Oncologist to advise on whether it might be possible for Paul to have another course of RT, if not I guess it will mean more chemo. As it happens Paul's next appointment letter to see the Onc. at Derby came today so we will see Dr Vijay again on 22nd. If he feels that RT is too risky, bearing in mind that the new tumour was directly above the original one, I intened to press for more TMZ.

Feel a bit down in the mouth today, I must admit but must keep going for Paul's sake.

Regards to all,

Sue

xxx

Sue, no bloody wonder you feel down - you have every right too - you've been through so much this year and though I know you've had no choice you've come across as handling it all so well - with dignity - which I so admire you for.  But that doesn't help the situation - everyone could be patting you on the back but it doesn't change a thing - you've still got to get through the next period of anticipation, treatment and emotional turmoil.  Paul's certainly got a good 'un on his side - hopefully he understands that what can be done will be done when you're with him by his side.  I wish you all the best, you are a lovely person xxxxxxxxxx