We Talk Brain Tumours

Hi all and welcome Harddays,

Sworthy, G has been affected badly by shaking hands, sometimes they record the 'twitching' as seizures others they just say it is down to weakness and medication also, it can be ok one day then really bad the next.

Naomi, Your dad sounds very much like G was when he was admitted.  We were told end stage then and prob about 4weeks. It's now 13 weeks on and he is still suffering but little speech and movement.  Prior to admission he used to love his day a week at the hospice and wants to end his days there but things are so unpredicatable, noone seems to know how he's managing to carry on.

Back to work full time tomorrow and dreading it, so worried about what goes on at the hospital when I'm not there.

Ange x

So sorry to everyone who's going through a particularly bad time right now, my heart goes out to you all and wish for a peaceful, uneventful weekend.

Julie - glad to hear that you are having a better day today, hopefully that will lift you a little also

Lindsey  - welcome onboard but sorry that you have had to join us

Naomi - I do hope that things change for you once your dad goes into the hospice,  you and your mum are really going through it at the moment

I have good news for once,  Nick walked yesterday for the first time in months.  He used his frame but wow what an achievement, I was so proud of him!  Physio is now coming 4 times a week and she doesn't think it is the tumour and is more muscle weakness from being on steriods for months so hopefully she is right and the onc is wrong.  Just in a 2 week window she has him sitting and walking with a frame so that is just a miracle from where we have been.  This has all really lifted Nick in himself and he is really pushing himself.  Finally, things feel like they are getting easier!

Hope everyone has a good day    x

Ange - good luck with work. 

I know how you feel about worrying when you are not around.  I went back to work last week and like you was dreading it.  It did me the world of good, I actually felt like a normal person for a while and when I came back home I felt in a more stable place in my mind to deal with everything.

Take care x

hello everyone thank you for your warm welcomes

hope everyones feeling a bit brighter this morning,the suns shining here allthough it doesnt really make us feel better it somehow seems easier to get out of bed.

naiomi hope you have a better day today darling.lots of love.xxxxx

liz things really seem to be looking brighter for you,hope this continues glad your feeling a bit better about things.

            have a good day everyone lots of lovexxxxxxxxxlindsey

Naomi

I really feel for you.  I am going through the same situation with my Dad, he says he has no pain but something is going on in his head which is tormenting him so much.  He also says he wants it all to end, and asked whether the Doctor could help, this just makes me realise what a difficult time he is going through and I feel so upset that I can't help him, other than giving him all the love and care I can.  My Mum died just over a year ago and he also keeps saying he wants to be with her.  He is in his late 80's and until he was diagnosed in April he was so active and he finds that hard to deal with.  He told me yesterday that before when there was a job to be done he had no problem getting on and doing it, but now he has a job that needs to be done but he can't do anything about it.

It is so hard, we are also having good support from MacMillan, without whom I don't know what I would do.

Try to keep your spirits up, everyone on this site is so supportive when they are also going through such hard times.

I know it has been said many times before but this is such a cruel disease.

My thoughts are with everyone, lets hope we can all have a reasonable weekend.  xx

Good morning all, hope you can enjoy a bit of this sun today.

Ange - thank you for that - yes its same with mum, shaky and then not and seems worse when she wakes up or had a tiny doze off.  Hope work goes well today and you can get through without worrying. 

Hi Pete - wish you too a peaceful weekend

Liz1 - that is fabulous news -  am sure that will lift him hugely as it seems to be disability that is worse than the illness - wonderful!

Friday tea times, I used to toast the end of a working week with my sisters, welcome the weekend in and wish the world a Happy Friday.  Mum got news of her 'no chance' surgery on our happy friday, I got all clear from some hospital tests the same day and today mum gets to go home from hospice on yes, happy friday.  So I wish you all Happy Friday and hope there's a little bit of sunshine for you all somewhere xxxxxxxx

yes niaomi its an evil thing,just wish i had a magic wand to make everything better for all of our families and us,thats not goin to happen so chin up and best foot forward.ilook at mum and what shes been reduced to and it hurts so much but somehow she manages to giggle and stay strong i dont know how,that makes me shake myself and stop feeling sorry for myself cos if she can keep smiling i know i just have to.

take care love.xxxxxxxxxxxxx

Afternoon all.

Thank you so much to everyone who has left me so many lovely messages. They are all very much appreciated.

Liz - what wonderful news! Gosh that must have given him such a boost. So lovely to come on here and read good news!

Majic - thank you for your message. Your dad does seem exactly like my dad! My dad is only 65 and was extremely fit and active prior to his illness. The Mac nurse says this is why he is struggling to accept what is happening to him.

Well today's drama .... Yesterday dad managed to get up and down the stairs twice (using his walking frame, two sticks, my mum and his bottom) but this morning he cannot get down them at all. For the moment he is content to stay upstairs (at least we think he is). Mum is waiting for the district nurse to come round but I hope she doesn't move him downstairs because mum won't be able to get him back up them tonight. The DN thinks it is likely he will stay upstairs until he goes in to the hospice.

Just another tiny piece of independence he's lost. Mum is also having to feed him now - dad has no choice as he can't coordinate hands and mouth any more but I can see the pain in his eyes when she has to do it.

Love to all, old and new.

Naomi.xx

Hi Naomi,  would it be an option to bring a bed downstairs for your dad?

I brought one down for Nick and that really helped until the hosp one arrived and it took the struggle away that I had getting him up and downstairs.

Hope everyone manages to have a good evening. x