We Talk Brain Tumours

Once you come to the realisation that you you're not facing this by yourself, things will start getting easier for you to deal with.

There will be times when you feel helpless, and there will be times (hopefully rare) that you will be in a helpless situation.  But, all you can do is the best that you can.

Have confidence in yourself, and never ever be ashamed of the times when you might feel as though you're failing because that won't be the case.

And be prepared to develop a dark sense of humour.  We've all laughed and cried with each other over situations that "normal" people would be horrified at.

That's right, we all gave up "normal" a long time ago.

And we're stronger for the change.

morning everyone

Just a quick message to say how much i agree with Araminta, pete thank you so much for all the replys and your knowledge. its so good to have you around.

Im not feeling that strong at all at the moment.

Morning everyone

Araminta, I am a little concerned that no one has mentioned blood sugars to you especially if your husband is on a high does of dex (10mg) is pretty high.  Normally, the aim is to reduce the dex very slowly to the lowest possible dose, then as Cathi said should there be a requirement the dose can be doubled, this usually helps then it can be reduced again.  You will find you learn a lotmore about pharmacy than you ever thought you needed or wanted to know!  You said he is confused as well, sometimes this can be due to high blood sugar!  Please ask one of the nurses to check it for you.  Blood sugars can be kept under control with tablets or insulin.  We found insulin to be useful as we could adjust it on a daily basis depending on what paul wanted to eat or drink.

Laura - you may think you aren't feeling too strong but you will find the strength from somewhere, we all do.

take care Jxx

Thanks J, I will certainly get Harrys blood suger levels checked, hes getting more confused all the time, not like hes got dementia or anything like that , but more childlike, can you relate to that. He knows that he struggles with saying the right words but  he still thinks he can do everything as before, like today I came home from work and he'd rewired the outside light, I really worry yet I dont want him to feel useless.

Araminta, I understand.  Paul lost his speech after about 6 months, scans were showing stable disease so we weren't expecting it.  He knew what he wanted to say but the words wouldn't come out and he couldn't write them either, it never came back but we learnt to communicate pretty well and he never lost the ability to swear, which he would never have done in front of me before.

I worked full time throughout, I was lucky to be able to do so but worked from home most of the time so I was always around, he thought he could continue as before until I found him outside one day - he had fallen and couldn't get up.  After that he started to realise some limitations

j

Thanks j dad hasnt lost his speech but just cant find the words he needs and sometimes i feel would rather not speak than look silly infront of people, he cant write or sign his name anymore either.

I know maybe i shouldnt ask but does this GBM cause problems with ones water works! dad seems to be going to the toilet very frequently and sometimes doesnt make it in time bless him but doesnt seem to be embarassed or worried when he doesnt, it seems to worry mum more.

Havent posted for a while but just wanted to thank everyone for their advice on my sisters legs cramps. I have just told her about 'tart cherry juice' and she's going to have a look tomorrow for it.

Well last weekend we had what many people on here told me we would have 'our first memories we have all made together and will remember forever'. We are a very BIG football family and it was arranged for us all, us 4 sisters, dad, my sisters 2 children and partners to go football for the day in a VIP box, we had the most amazing day and my beautiful sister (who shaved her hair off on the wednesday) looked absolutely stunning and had a massive smile on her face all day. It really was a day that we will never forget, but it has unfortunately effected me and ive got really down, i wont go out, works xmas party tonight and i couldnt go, just couldnt face going out and enjoying myself knowing my sister is going through what she is, I mean she is doing really well with the treatment but I just cant help but think further down the line, struggle to sleep, have nightmares about her first MRI scan after her treatmemt finishes, its the first thing i think about when i open my eyes and still cry so much in the evening. I hate going to work, i know its stupid (and its not going to happen) but every time the phone goes i think its going to be for me with bad news. Im just not sure what I should do anymore as I know I cant carry on my life like this for what hopefully will be many more years.

I raised over £1700 for my sponsored haircut for Macmillan, i was completely overwhelmed by peoples donations and well wishes,

Love to you all

£1700 for a haircut?  Wow, that's awesome.  Well done with that!

I've just coaxed Ali's laptop into life (it has a bad battery) and gone though her emails trying to find people who might not know the news.  So I've found a few people and sent them the sad news (if they don't know already).

I've also closed down her eBay and Paypal accounts while I was there.  Sadly, the last thing she bought was for me.

Laura glad you have started the memories, sad as Paul's time was the final 18 months together were incredibly special and we became even closer than I ever thought possible, something we discussed on here a while back and many others said the same.  

Ilowe.  Please go to your works do, have some fun and tell your sister all about it, she isn't going to thank you for sitting in and being morbid.  She wants to see some sort of normality around her.  Life isn't fair but avoiding it wont help much.  Well done on the fund raising!

Laura GBM can affect anything.  Ask to speak to your continence nurse, they can advise on different ways of coping and provide specific aids.  If you are struggling go to TENA on line and order some man pads, ask for a VAT number so that you get them VAT free.

Pete xxx

Martyn - if you are reading - thinking about you and Doreen as always xxxx

I am going away for the weekend, early star to Christmas. Will be quite strange but I am used to travelling alone so hopefully will be OK.  Its a hotel I last stayed at last Christmas with Paul for my niece's 21st.

jxx

Just to add to Joanna's excellent advice here.

When I used to go out with some friends for a quiet dinner out, I always used to come back with the after-dinner chocolate for Ali.  But then I always did this, even when Ali was well.  But if your sister is ok with you going out, then you should do.  I found that because I spent so much time in the house with Ali, I had very little to talk to her about.  You need to go out and bring the outside world to her.

And Laura. You may well find that pads (when they're needed) might be provided free of charge.  When I had my first (and only) shipment, it's three months worth at a time.  It's a sensitive subject, by you might want to start off with some of the more discreet liners first and just use them as a confidence boost (explain that they're just being used in case you don't manage to get to the loo in time).

And Joanna.  I hope that you have a good weekend away, it's a big step doing that.  I'll be doing some travelling through next year, going to the places that Ali and I enjoyed the most.