We Talk Brain Tumours

Jonny a few people told me about Movicol.......after I had finished chemo lol  but worth keeping in mind for Ilowe's sister as she is only on her first cycle.  I finished mine in Dec 2010 :)

Martyn,

Many thanks for your kind words, and for your valued support and advice to us over these past months.

Please don't feel guilty for still being on the train - you more than anyone else knows that no one here knows the length of their journey.

We are all still here for you.

Martyn,

Please don't ever feel guilty. The fact that you have been on this train for so long almost makes your journey harder (if you know what I mean) than ours have been. Naomi.x

Pete - a bench sounds really fitting. I like that idea. Two years ago one of the adored teaching assistants at our primary school was diagnosed with GBMIV at the age of 39. Sadly she contracted pneumonia whilst on chemo and died shortly after she was diagnosed. She had a love of stain glass windows and one of her pieces is hung in the reception at school in memory of her. I think of her every time I walk in to the school.

I hope today is kind to you Pete.

Well, I get to register tomorrow.

I had a minor worry when the registers office needed to know exactly where she passed away as it had a bearing on which office the death would be registered.  Thankfully, we're in the clear and I can do this locally to home.

I've had the first batch of cards through the post and it's very disconcerting to see only my name on the front when everything before had been to the both of us (I'd habitually leave cards unopened for Ali to open for herself).

Ironically, there's also some junk mail addressed to Ali's maiden name.

Pete,  pardon my memory.....when I read your post I thought the bench was a wonderful idea, especially as its for parents will get to sit on it when they are waiting for their kids ........ I am sure Ali would agree.  I worked as a pre-school assistant with 2 and 3 year olds and LOVED my job, I miss it every day but such is my concentration and word deficits that it just isn't possible.

Martyn, if anyone should feel guilty it is me ....... you and Doreen have been on this train for a long while, but it has not been without its "cancellations" and "railworks" there was another word I wanted but I can't get it.....as I don't mean cancellations more like setbacks or holdups but I am buggered if I can think of it right now! (thank goodness for the edit button, I have had to use it twice!)  I have only had one seizure (so far) breezed through surgery & rt, ok chemo wasn't a walk in the park but no nausea etc.  Clear MRI's to date, but I hope that we all bring something different to the group, knowledge, information, support, laughter, hope ..... and each and everyone of us is valuable for these things.

I hope everyone has a little sunshine today as it is here in my corner of Essex.  Be kind to each other and yourselves.

Love & Strength to all who want or need it xxx

Just come on and updated on all the posts and wanted to say you guys are amzing.

Martyn Alan and I have been on the train a while now too and really know where you are coming from, you have and I know will continue to be such a support to all of us on here please do not feel guilty.

Pete I can only echo Debs words on what a inspiration u are to all of us - the bench sounds such a lovely idea.  Please pm me if you wish if I can be of any help with the forms, and the legal side of things it would be an honour to assist you in any way x

My man, is feeling more tired now, and memory and behaviour seems to be deteriating but on a positive note he can still remember how much of the old vino is drunk by yours truly !!

I took some nytol for the first time last night (abstained from the vino as leaflet said too) still woke up three/four times night sweats etc so think will ask our vet for tranquilisers lol . 

love and strength to all my fellow passengers  Julie xxx

Dan starts 4 weeks radiotherapy in the morning, Followed by 6 months chemo. I have read and assimilated the information shared by you good folks. Which I must say, I am so grateful of ( forewarned is forearmed )

I read somewhere "It is better to be proactive and strategic ,than to be reactive and static" Haven't got a clue who the quote was by but I intend to be the former for as long as I'm able.

Wishing everyone peace and tranquility for the rest of the week

Anne

Pete. Thank you for your kind words.

I saw the mention of Movicol. I experimented with this and this is what find works the best for us. Half a packet of M C mixed with 100mls of hot water and topped to 200 ml with either pure orange or pineapple juice. I give this every day. If I can get some porridge down Doreen, I will mix in honey, Greek yoghurt and Lactulose. As far as I'm aware Doreen enjoys both and they work a treat. I hope this is of help to someone. Lots and lots of love to you all. Martyn XXXX

So day 2 of my sisters treatment and it was the same as yesterday, couple hours after RT she felt sick and then was sick, I have spoken to my brother in law about antiemetics and he says she has them but they are not working, i have told him he must tell the hospital and maybe they can try another one but he seems to think that the Antiemetics she is taking are the ones to go with her CT so therefore like a cocktail and she wont be able to try any different!! I mean I dont know, his the ones going to the hospital and seeing the Drs not me but im sure ive read posts from people on here saying they tried different ones until they found one which worked the best.

My sister has just text me after i txt asking how she was and she replied 'Terrible and its only day 2 dont know what im gonna do'.

I feel so useless so helpless

On a different note ive read about people using Movicol, I have health issues which causes me to become constipated and I have tried loads of stuff and this is by far the best stuff I have ever used.

Love to you all