We Talk Brain Tumours

Pete xxxx  

Glad Dan had a great party.  Paul had no side effects from the radiotherapy other than hair loss which of course never grew back.  He didn't really have many side effects at all from any of his treatment until then end, even then it was Pneumonia that was the final issue.  Lets hope Dan sails through and copes well.

Debs - you got a real posh mask!!  Paul's was basic solid plastic that cracked as his head swelled slightly with the treatment.  Glad you enjoyed lunch out today and the robin sounds lovely

Joanna xxx

Hi Anne,

It sounds like Dan has everything under control - good on him!

My Dad, like Debs, didn't have any untoward side effects from the radiotherapy/chemo, apart from losing a bit of hair after about 3 weeks. It took about three/four months to grow back in, which I think is pretty normal. Other than that, he boosted his energy levels by going for a pub meal and a Guinness once or twice a week after his RT :-)

Just remind Dan to drink water regularly (and don't go TOO long between meals). Neglecting these two things led to my Dad's one and only seizure, months after treatment had finished. He had also been pottering around in the garden that afternoon. It was very frightening, but he recovered after a night in hospital.

A year after Dad's op (11th of the 11th), he is doing better than we could have imagined. He has weakness on his right side (mainly his arm and hand), which his consultant thinks is down to a combination of the seizure and RT/chemo.

He gets a bit frustrated with his weakness, calls himself 'bloody useless' at times, when he can't do DIY/house jobs the way he used to, but he has adapted well at cutting his food up with a fork with his left hand, and just gets on with it all. We are very proud of him, he just takes it all in his stride and doesn't moan - if it were me, I think I would moan a lot.   :-S  We also treat him once a month or so to a neck, back and shoulders massage, about £20, which apart from loosening up the joints a bit, lets him know he's worth it :-)

Wishing you all the best. And thinking of everyone on here, especially Pete and Ali. Stay strong Pete, you are most excellent.

Debbie xxxxx

Hi everybody,

I have to confess that I have been a "lurker" for quite sometime and have been impressed with how everybody has coped with the problems we all have (obviously some much worse than others). I do have problems with typing and spelling (because of the bt) so please bear with me at times if my messages lack in the grammar and writing departments. If you are interested, I have written a blurb to say what I have and what has happened to me  - the gist is an anaplastic astrocytoma grade III.

I just wanted to say to Dan: sorry you have to be here but there are quite of us here who know what you and your family are/have been going through so please ask any questions you want to. These seem a knowledgeable lot!

To Debs - your mask looks just like mine.  I kept on to mine as well - not very fetching are they? I'll try to post a couple of pics when I can figure how to.

Not sure I'll have much to post as not much seems to happen to me :( but it is good to know there are always other people who know what we are going through - it is just such a shame that you have to be here. That doesn't sound right but I hope you know what I mean and don't take offence.

Thank you all for reading this - it has helped already.

R xx

Hi R,

Good on you, well done for finally posting! Keep doing so, from reading your profile, you have already been through so much and I'm sure your story will help others. I have got Dad's RT mask in our garage, and the kids occasionally like putting it on. Weird I know, but it looks kind of artistic in photos, grandson's head inside grandad's head (see below).... :-)

Debbie xxx

Ali's blood sugar down to 2.7 this morning, so she's on her way to A & E right now.  Wish me strength.

Strength on its way xxxx

Hope everything is ok with Ali Pete, sending love & strength to you both.

Debbles, my daughter stuck my mask straight on when I brought it home from hospital, she was 10 and I thought she'd be scared but no she was very intrigued by it.  Ol' Lilac resides in my wardrobe now, beside the very expensive wig we bought and I wore once!

I am going to phone the hospital tomorrow as since Thursday, I have had some kind of balance issue.  When I get out of bed or lay down and sometimes even sitting down I get this wave of sort of dizziness flow over, lasts around 10 seconds.  Feels like I am on a boat.  It's very offputting and I hate making a fuss but truth be told, I am a little worried.  I have had no headaches since that one on Tuesday or visual problems, no ear-ache to suggest an infection there......but I will speak to Kim and probably make an appointment with my GP.

I have been carrying on as usual, just being a bit careful going up and down stairs and just taking my time doing things........lets hope it turns out to be nothing, but I think because I am coming to my "best before" date, I am probably reading far too much into things.  Everytime something like this happens I immediately think "ok this is the beginning of the end".  

A bit of a downer post from me, so apologies folks.

Love & Strength to all who want or need it xxx

Thinking of you, Pete. I hope Ali gets sorted in hospital and is back home soon.

Debs, sorry to hear of your worries, but hopefully it's to do with your inner ear rather than anything to do with Buttercup... let us know how you get on.

Love to all  xxx

Thoughts and special prayers for all.

Good luck

love jmd xxx