We Talk Brain Tumours

I've just fed Ali and laid her down to sleep.  After dinner, when she became a little more alert, she took hold of my wrist and tried to tell me something (her speech can be very affected these days).  As near as I can make out, she was asking me to "take it out", which is something she asked me about several months ago when she was more communicative.

I really hate this.  Much of the time, Ali doesn't show any distress or worry about her condition, but it's rare times like this that cut my emotions right to the bone...

Hi Naomi

My name is Pam and although I've never messaged you before I have been reading your story so far. I send my love and wish you and your family strength through this awful time.

I wanted to message you because you mentioned that your Mum is waiting to hear what funding she will be allocated for your Dad's nursing care. Have you been told about something called NHS Continuing Care? 

www.nhs.uk/CarersDirect/guide/practicalsupport/Pages/NHSContinuingCare.aspx

My husband has Grade IV GBM and, whilst in hospital, was told of the option by the wonderful people on the discharge team. He was approved by the PCT Committee and now has absolutely every aspect of his care covered by the NHS - eventually this will include his nursing home costs should he eventually choose that route. A report needs to be written by the team looking after your Dad (including his consultant and Macmillan Nurse) which will then be presented to the PCT Committee in your area on your Dad's behalf (most meet on a weekly basis). They make a decision within a day or so. For Tony it didn't really mean much at the time as his current care support involves one carer for 30 mins each morning but we will definitely appreciate it when it comes to nursing care costs some way down the road. It isn't means tested like the care through Social Services either so your Dad could basically have billions in the bank, it wouldn't matter at all.

Sorry if you already know of all of this but I'm increasingly finding that nobody tells any of us anything (especially with regards to funding) and we have to get out there and basically find it all out for ourselves! Rather tell you something you already know than perhaps miss out on helping somebody! 

Good luck with everything. 

Take care of yourself too.

Pam

x

Thank you everyone for your kind words. Pete - gosh it's so hard when my dad is trying to say something and we can't understand so I understand your frustrations when Ali does.

Just back from seeing my dad. Firstly, I am alarmed that my mum was visited by the social worker from hell who said dad needs to be out of the hospice and in to a nursing home by the end of the week. Mum told her that the nurses and doctor told her it was unlikely he would be moved now and she replied "that's what we always say". It's so upsetting and stressful. Tomorrow we are going to look at two homes. It now takes four nurses to get dad in to his hoist so I am panicked that a nursing home won't have enough staff to cope.

Dad was high as a kite with his new meds but will apparently settle down once his body adjusts. He kept rubbing his head above his eye and after some time we established he is in pain. I really hope this doesn't offend anyone as I know we are all in the same boat but when I got there today dad was in his first nappy. I knew it was coming but the shock almost winded me. Even worse than that is the fact that he is completely unware he is wearing it. He is on and off the commode trying to pass a bowel movement (without success) and we know when he wants to wee as he gets agitated but he can't go. Then of course he has an accident. Mum said his last wee in his bottle today was amber in colour but she didn't think to keep it. I have read enough about BTs to know what that means.

He spent the whole time fussing with the corner of his hospital bed. He has limited movement in his left hand and forearm now and he kept tucking it in, lifting it up, fiddling with his blanket etc. It was very unnerving. It was like he was looking for something.

We managed to work out he was saying "I'm never going to go home am I" and he was crying. I couldn't lie to him so I told him simply why it isn't possible now. As I was leaving, I told him I was going to email my sister and asked him what he wanted me to tell her. Now bearing in mind he hasn't said anything comprehensible for weeks he said "tell her to come home" as clear as a bell. I asked him if he was waiting for her and he nodded. So now we have our answer. I think he is hanging on for her and I don't want her to miss her chance of saying goodbye.

Sorry for the essay people. When I start typing, it just seems to come flooding out.

Love to all.

Naomi.xxx

Pam - I think we must have posted at the same time! Please don't think I was ignoring your lovely message.

I would like to say a big thank you to you and everyone else on here that has helped me with the financial part of this. I honestly wouldn't have had a clue where to start without all of your help. I am going to show mum your message tomorrow Pam and together we will present our case to the social worker.

Once again, thank you so much.

Naomi.x

I listened in horror today as my sister told me my brother in law appears to have had a series of mini strokes. As you will see from my profile this is how my father in laws diagnosis started. I pray with everything in me that it is 'just' strokes. The creeping fear that those lesions are not bleeds but tumours is ever present in my mind. His dad died from lung cancer with secondary tumours in the brain, as did his mother. Please please please let my fears be unfounded.

OMG - It has taken me nearly 3 days to find this forum again and each time it is so slow and throws me out of it.  What was wrong with the system of finding what you wanted on the front page?  How on Earth new people are gong to find the support we found is beyond me!

Naomi, Pete  I found that although Paul couldnt speak we had some sort of telepathy, somehow I knew exactly what he meant although not always immediately.  Naomi your SW sounds like a jobsworth, your poor mum has been through so much, so glad youare there to support her and I hope your sister can get over here soon so dad can get his wish

wishing you all a peaceful day

Joanna xx

I am not sure I actually believe I made it here.......I only had to refresh 4 times of it timing out grrrrrrrr.  Was beginning to think I would just have to read everyone elses post on the 'latest activity' page!

So now I am here, I don't even have anything exciting to say.  Just I've lived through one site change and now another......do I like it, NO will I put up with it, YES because the folks on here are too important to lose.

So make the most of me, I may not make it back for some time.....I have clicked to make this thread a favourite of mine.....whether it worked or not who knows!!!!!!!

 

Gosh it has taken me all week to find this - I have emailed Mac for help and haven't got a response and was beginning to panic!

Naomi - sorry to be a pain but what does the amber colour mean as I have never read this and mum is going through the same thing?  Hope you are bearing up with your father and that your sister get's here soon  xx

Hi everyone, yes taken me this long to find you all,

read up on lastest posts, naomi sending you lots of love what an amazing daugther you are.

Hugs to all my mac family so pleased finally found you all.

Update on Alan.

It never rains but it pours in our household.  Took last Thurs Frid and Mon off work as our son was getting married on Sat to keep Alan calm and fingers and everything crossed so that he could make the day.   Was out getting last few bits for wedding on Thursday when received a call our FARM was on fire !!!! Cut a long story short we have lost all our winter feed stock hay and straw and a massive Barn.  I spent the whole day with the police and fire crew and my son worked constantly with the fire brigade to keep the fire under control.  Alan was told of the events by my daughter and his eldest sister and took the news well.

Saturday came and it rained and rained, this did not matter as we had the most perfect emotional fantastic day.  The sun shone for the photos and Alan who was our sons Best man managed a two line speech and caused a standing ovation - god in tears now recalling this.........

We stayed at the hotel and was on babysitting duties overnight to our granddaughter, this was so grandad ie Alan could go and sleep in the evening as he get so so tired. WELL  i took our granddaughter to bed at 10.30 and Grandad came to bed at 2.00 am

We made our memories gave our family the best day ever and feel so proud emotional and absolutely knackered

Love to you all xxxxxxxxxx

 

Once again its taken days to get here, there was so much activity prior to the change and I worry some of us are losing the support that we need

JM7 you had me in tears, so sorry to hear about the barn and winter feed, the wedding sounds so fabulous and the 2 am bedtime - brilliant!

 

love to all

joanna x