We Talk Brain Tumours

Sworthy

Thank you,she fund raises for SDBTT If you google -you can find her under Hannah Louise Jones - she like everyone else who has this terrible disease is amazing- she did bag packing the other week for 4 days for BT research - as she said 'how can I expect my friends to do it if I dont' she paid for it though as she had double vision after and has been in bed more since. She has also done a lot for Alderhey as her Consultant Barry Pizer does a lot of research into high grade gliomas. Dont be sad though she says she wouldnt change her life (I would) we are 'lucky' shes still here. Ive just been diagnosed with breast cancer and her first words were ' Your not going to start fundraising for breast cancer are you?' talk about focussed -My answer was obviously no as whilst Im not trivialising it research into Breast cancer does attract a lot of funding. Love to all Dianne J xx

Dianne, don't know what to say to you, how awful for you, sending you the biggest of hugs xxx

Dianne,

I have found that the memory (or lack of short-term) deficits have levelled off now, it seemed to stabilise a few months after I finished the course of chemo.  It's pretty pants and writing notes does nothing for me, cos I forget to read them!!!!!! 

I do think my concentration & focus levels have slightly decreased and even typing on here (or when I update one of the four websites I still maintain) I have to double or triple check everything.  Although I am a touch typist, I find sometimes when I read it back, very odd words or words that are similar to what I was thinking, have been typed.  Perhaps its my alter-ego!!!!!!! 

Everything takes more effort, things that would have been done in a minute can take 10 now.  So today I am sticking two fingers up at Buttercup (the tumour I had removed) cos she left a lasting legacy!

Love & strength to all who want or need it.

Thanks Debs just that H has only just started to really deteriorate on the memory side . She has been recommended to get a new phone with Apps to help her wont improve her memory but will help her function xxx

Thanks Debs and Im sticking two fingers up at buttercup too!!!

Incidently when H had her last op and she had a stroke her first movement in her left arm was a two fingured gesture!!!!!

Hi all.

SWorthy. Doreen's tummy is also very enlarged which is apparently due to being confined to her bed and wind retention.  I have done many experiments re constipation and my way now is;  All Bran with a dose of Lactulose on before hot milk and mix.  Early afternoon, 1 sachet of Movicol mixed with 125 ml of warm water and topped up to 200 ml with orange juice. I buy the juice from Sainsbury's or Morrison's in a pack of 3 for about 90p. I also make apple crumbles which also have a moving effect.  I hope this may be some help to you and anyone else.

Love to all.  Martyn XXXX

moving us up

Good to hear from you Martyn. Sorry to hear about Doreen's tummy. Thank you for the constipation advice - you could write a book on this. You are far more of an expert than the doctors!

Well, MDT meeting at dad's bedside at the Hospice today. To cut a long story very short, they want dad out of the Hospice soon as. He is effectively bed blocking (my summary of their words). One of the nurses actually said - when mum pointed out that some of the patients had been in there weeks and weeks - that there isn't much they can do for dad as he isn't in any pain at all and that really all he needs help with is walking/talking/feeding/toileting/standing/sitting up etc. She was lovely and very apologetic but still. The conclusion that dad is being moved to a nursing home as soon as a bed becomes available. They are going to means test mum but as she has had heart bypass surgery it is unlikely she will have to pay much, if anything.

Whilst I am pleased mum won't suffer financially too much, I am beyond devastated that dad is going in to a nursing home. His own parents were in one and he used to say to shoot him if he ever ended up in one. I feel so uncomfortable about it and it doesn't sit well with me. They could only offer mum twice daily visits and occasional overnight stay if he went home. I've seen it take two and sometimes three nurses to move dad on to the bed pan/commode/chair etc and there is no way mum could manage that on her own.

Honestly, I didn't think the end of dad's life would be like this. Maybe I'm being naiive but I thought he'd be looked after by the medical profession and be able to end his days in the hospice like he wanted to.

Sorry for the gloomy post everyone. I just can't shake this feeling we're letting him down and it's horrible.

Naomi.xx

Firstly. Martyn I am thrilled to see you posting , just great to know you around!  Obviously, bowels wouldnt normally be the subject of choice but hey ho.............

Naomi, I am sorry to hear that dad will have to be moved to a nursing home and I know. it wasnt what mum or dad wanted, however, they have changed so much over the last few years and are no longer the big room with everyone sat around wailing, they do  have personal care plans and should come to visit dad before he is moved to see what he needs and how you feel, hopefully your mac nurse will still support you and visit as necessary.  When mum has the financial assessment they can only look at savings and will only take into account what dad gets from DLA, any personal income and half of any joint savings, anything in mums name alone will not be looked at, nor will mums income.

Debs - you know I love your posts you bring such humour to what could be a depressing place, you remain an inspiration.

I received a letter from the hospice today thanking us for the donations made, although glad so much was donated by friends and family it made me sad, a reminder as if i need it that he isnt coming home again........

take care everyone hugs to all xxxx

Joanna, thinking of you, nice to receive the letter but yes another reminder.

Martyn, thank you very much for your post,  How are you doing at the moment?

Naomi, its honestly beggars belief! There is currently a lady in our hospice who has been there since February as her son and daughter couldn't cope.  Yes I understand that sometime these beds are precious.  One thing though is mum was in a ward with 4 others who were at later stages of the illness and one by one they disappeared so maybe there won't be that to experience with a care home.  Hope your mum is managing with all this.

Mum has come out of the hospice only to find that her wheelchair doesn't fit through the doorways.  Luckily, my brother in law is in mobility so he got a smaller chair then we had a joiner up at tea time to do some alterations.  I couldn't get mum to the loo last night and kind of dropped her in the bathroom.  It was awful.  She said she wasn't hurt and fortunately it was her weak side that she fell on and I can't see any marks but gosh, she has always been around 7 stone on a heavy day but with the steroids and constant eating she feels much heavier and as a dead weight, I just couldn't hold on to her and fell with her.  Can't ever allow that again!  We have homecare but only one lady came and she realised there should be two so she couldn't do much.

Hey ho, another day, another thing to think about.

Hope all is well with everyone xxx