We Talk Brain Tumours

Pam....I cant help it but your post had me in stitches! You should write sit-coms.

Cx

i have spent a lot of the weekend crying at stupid things.  Today i have cried with laughter, pam and julie i know its not really funny but as cathi says only BT communitiy would understand.  YOur stories have made me laugh so much.

Julie - you know when and where you are moving , contact your new GP who is probably already aware fo the situation from the family and ask if the District nurse can visit the day after you arrive.  If you already have notes from your nurse up here they can provide a copy which will make the transfer even easier.  I would advise that you have adequate medication before you move other wise you will be in a frenzy trying to source it when you get tot he new place. 

If you are going on days out - ask you DN for some uridoms, like a catheter but not a permanent internal fixture and it may help with the last minute and frequest requests

jxx

Yes..Get the uridomes or external catheter. They dont suit everyone but for us they were a godsend. They come with a short bag for travelling and a longer one for night. . .they are like sticky condoms. But...ask for the spray to help remove them as they are a bugger to get off. Like a bikini wax.

Cx

Another one to add to the BT book - Alan has a pay as u go phone, so do I .  I get 1000 free text by topping up £15  I top Alan's phone by £10 he is on O2 and gets 300 free texts.   So he manages to phone O2 (this is the man that never speaks on the phone) starts ranting and raving at them that he has Brain Cancer and should have free texts.  The poor guy on the other end of the phone must not have known what was going on but he just kept saying he could not increase free texts as he would have to top up by more swear words galore and the phone gets put down - hour later bleep bleep O2 given extra 500 free texts.  Alan very sweetly trying to text a thank u and apology   Julie xx 

Joanna Cat and Pete  ((((((hugs))))))) to u and everyone else on this train thanks for all your support.

Here is a virtual glass of vino (I know its early but hey it is only virtual)  Oh yes forgot to say Pam another one of Alan s obsessions is how much I drink!!!!!! must admit I do like it but we always went out as a couple socialising in the pub but since Alan illness he has not had any alcohol and watches me like a hawk - even after one glass of vino it is heard by everyone that O she s had a drink lol must remember to book my AA session xx

I have to say that youre all saints!!  My stepmum was ok as a person but she became quite sweet with her brain tumour.Its so strange how it affects the personality.HUGS to all of you xxxxxx

Hi Julie

Hope I,m actually on the site. Have been trying for months don't know if this will just go to you.Anyway will give it a try. My hubby diagnosed July 2010. Debulked august given 6 to 18 months on Fri 13th August (Irony or what). No probs with RT and Chemo except tiredness . Turned to drink in a big way and has been horrendous to me and the Kids. Is ssooooo lovely to everyone else infact way over the top nice. But has finally calmed slightly over the last few weeks. Still drinks but not as bad.

But its the bird seed. He too appears to be obsessed. He was just awful with me yesterday because we had  run out of nuts for the birds and I wouldn't take him to the pet shop straight away ( we have the fattest birds in the village) Don't know how they manage to fly to actually get to the nuts but hey ho!!

If this gets to everyone Thank you all of you for being there. I have been like a virtual stalker for months. You have made me laugh, cry and feel very ashamed but I've never felt alone.Damien (my name for the tumour is also on my husband's left temp lobe.

So sorry for all of you who have lost your love ones recently I have been thinking of you all.

Stay strong Denise

Oh Julie 

That's so funny. If I was married to Alan he'd have staged an intervention! I went to the corner shop today to buy a few bits and the guy behind the counter said 'You forgot to get wine!'. How embarrassing - mainly because it was true!! We've only lived in this area for a few months! Just shows how often I'm in there.

Tony is a fully paid up member of the Brain Tumour Discount scheme. Every time we go into a shop (and we're shopping a lot at the moment because of the impending house move) he starts off with, what to everyone else seems like an innocent enquiry about price. I am usually standing behind his wheelchair thinking 'Please don't say it, please don't say it, please don't say it!' and then he says it 'What? That's your best price? Do you know I've got a brain tumour? Do you know what that's like? No? Of course you don't. Get me the manager, get me your boss!'. I have to be honest, sometimes it does work, sometimes it doesn't. If it doesn't I'm usually ordered to push him out of the shop with him effing and jeffing about how he'll never darken their door again.

We also have the phone shouty tumour thing at mobile phone companies, energy companies - the bank is one of his favourites "I have a bleep bleep tumour!". He even shouted at the estate agent because the people selling their house to us wouldn't sign a contract to commit to purchase. He said he wanted the option to sue them if they pull out! It took me almost a whole day trying to explain that this isn't legally possible - with or without a tumour.

And then there's the other purchases - since he got ill he has bought an iPhone, an iPhone speaker stand so he can play his music - oh, and then there's his music. I check our online statement every day and usually wake up to any number of iTunes purchases, books he never reads, TV shows he never watches, he does listen to the music though. He now has an iPad with three different types of stand, none of which suit. On his list of future purchases (and when I say future I mean within the next few days) he has, speaker stand for the iPad, separate speakers which are iPad, iPod and Mac compatible, a wireless printer (we already have one) and yet another pair of earphones because none of the ones he's purchased so far he likes. Last week we had a super dooper okey kokey stereo fitted into the minibus that he can attach his iPhone to. Now he's fed up with his perfectly good laptop and wants a Macbook pro. Does this sound familiar? After reading some of your posts today I have no doubt it will to some.

And, guess what he wants for Christmas? A bird table - so, after reading this thread, I fully expect to be heaving enormous bags of bird feed around by January. He hasn't started on clothes yet but it is probably only a matter of time.

He had an obsession about getting an aquarium for about a month which we did eventually talk him out of - not before he bought a small library of books on the subject. His current obsession is a motor boat (we're moving to the coast) although how he's going to get into it in a wheelchair I'm really not sure. Never say never with him though, he usually has a way of getting what he wants. Of course assuming we are able to sell one of the children to pay for it!

I can't believe he isn't exhausted with it all. I know I am. He sleeps very little and is so intense about everything. I know because while England sleeps he's tapping away on his laptop sending any number of controversial emails to our nearest and dearest in the middle of the night. I never know what I'm going to wake up to. Never know who I'm going to have to call and apologise to or make excuses to. As his behaviour becomes more extreme I'm finding it increasingly difficult to cover for him but I feel so disloyal telling people he's behaving this way.

This isn't my husband. This isn't the man I married. I don't pretend the original was perfect. He has always had a strong and challenging personality, he was very driven and focused, our relationship at times was confrontational. We are both fairly strong willed and it's what drew me to him in the first place. I don't mind a challenge but this? This is hell on earth. The tumour seems to have taken all of the negative bits of his personality and fed them until they have taken full possession of his mind, making him this nasty, self obsessed stranger. 

Well, it was good to get that lot of my chest! I have to say I find writing it all down on here so much more helpful than most other therapies I've tried. 

Thanks for letting me moan.

Pam

x

Hehe. We will all be joining with you at the AA....and who said we were only on the virtual ones tonight?

Cx

Welcome Denise. Glad you have joined our train .... Virtual or real glass raised  to you  tonight. xx

Cathixx