We Talk Brain Tumours

HI Debs

Thank so much for your reply.  Nice to be in touch with another AO3 person.  Yes, it's quite encouraging that my husband has done fairly well so far.  His tumour has co-deletion of chromosomes arms 1p and 19q, which does improve prognosis quite a bit.

We're still waiting to hear whether he will be granted ill health retirement, then we'll talk to the benefits advisor about claiming DLA

Take care!

Tiggy! That is crazy! You would have thought by now that the NHS hospital would have contacted the private clinic to find out what clips were used! They should have sent a copy of the report about the whole operation including the clips they used! Besides how are they going to moniter your hubbys progess if the wrong clips were used?! I feel very very much for you there and I hope that both hospitals get their act sorted out. As for your hubby having more fits I hope things settle very soon and that you have the scan done as soon as possible.

Peabs- that is a good result from your email and let see if they do get Hayley Mills involved. It may even mean another programme that will focus purely on BT's.

Felix the cat- my hubby at the moment is on the higher rate for DLA - not the very top but almost as when he came out of hospital he could barely walk and I was caring for him 24 hours, so that also meant middle rate carers allowance. However eight months on, he has made fabulous progress and he is talking about going back to work part time after his last lot of chemo which is in three weeks time. He will give it a month then he plans to see how it goes. Unfortuantly he will not be able to do the job he was doing orginally- he was a driver- however he hopes to do warehouse work if he can. He has already talked to Social and they are making adjustments as I write this. Its not too much of a worry as I am the main bread winner anyway but it has been a time of adjusting.

Julie

Yes I rang the surgeons secretary and she faxed the details through then I rang the MRI dept to let them know it was on its way. I would have done it previously if i had known but shouldnt have had to really. We have now been told they will do it tomorrow. I think they just wanted to get rid of me! x

The Macmillan nurse helped us and wrote a letter which meant we were fast tracked. It was in the bank account within 8 days. It was such a relief to not have to worry about it. He didnt have to go for any medicals once Macmillan got involved. Yes I would agree with Ann the blue badge is so useful not just financially but to allow us to get out a little.

Best wishes to all on this road x

Tiggy I had the same, Queens hospital has an in-house Macmillan office with a benefits adviser.  He sat and filled my form out (its sooo long and I know I couldn't concentrate properly on it) but I first heard back from that they were awaiting a report from my consultant.  I didn't hold out much hope but got full rate and backdated.  I have never driven and didn't qualify for a blue badge because my husband drives to work and the car must be solely for the use of the 'disabled' person !

I am not really in any different position now to when I first applied, although I haven't had another seizure, who knows as and when one might happen.....brain tumours are not a very exact science and what one person experiences another may not.  Bit like when my insurance companies told me I can't get my pensions unless I have a form to say I am going to live less than a year.....its more a question of  "how long is a piece of string" with us.  You can be feeling fine but an MRI will tell you different.

So frustrating, the whole journey!!!! Oh and I still get fed up that when I get the MRI checklist through (which asks if you've had brain surgery, clips or  bolts etc) that I have to phone the MRI department EVERY time.  Takes me a good few hours to get through and explain that yes I've had brain surgery & got bolts in my bonce but I've had several MRI's since all at their hospital.  They just say "oh thats fine then"......then you go through it all again when you get to the MRI scanning waiting room with an attendant who asks the same bloomin questions I got cleared on the phone a week or so previously.  

Think I am in a bit of a mood today - must be cos I am waiting for the hospital to ring back with news on my next scan date.........gonna be going through all the above AGAIN!!!!!!!

Debs, look into BLUE BADGE. Even though the car doesn't belong to you YOU ARE STILL ENTITLED to BB. Christie couldn't drive. She was 18 when her BB came, so an adult. What they did was to list me as her designated driver IF SHE NEEDED to go anywhere. Think you are entitled. PLease ask again. Also they listed things like loss of memory, her vision in both eyes had gone in upper left quater, and she was under the umbrella of EPILIPSEY, with seizures.

ALso if you have BB you can REGISTER as being disabled, so any products that you buy that assist you personally with your illness/disablity can be VAT exempt...

LOve to you

PEABS XX

Hi Debs

You should be entitled to a blue badge - you can do it online.

Nothing to do with being a driver.  The BB is for you and it can be used in any car that you are travelling in.

With us, no way could I drop Steve off at the hospital entrance and then park the car because I couldn't leave him on his own.   So long as you only use it when you are transporting the person it belongs to.  You cannot use when they are not in the car.

Hope this helps

Take care

Ann x

It's been a while since I dropped by but I think I am going to need to rejoin the train and I hope there is a seat free. I hope people will excuse me for not being able to read back for more than a few pages and therefore, sadly, there are lots of names I don't recognise. Hello to all and big hugs for my old friends here.

It's getting on for 3 years since my beloved Paul was first taken ill with what turned out to be GBM. I'm proud of him for how well he has fought. He has deteriorated suddenly in the last couple of weeks and I feel in my heart that a big change is coming. He last saw the Consultant in November and because he has been doing so well, the Onc said he would see him again in another 6 months but that he would arrange an MRI scan. He hasn't had a scan since April last year when it showed no regrowth in the original tumour (i.e 50% of the size before treatment started) and no sign at all of any abnormaility in the location of the second tumour. The MRI scan was last Thursday and the Onc told me to call him a week later and he would give me the results. Paul has been so unwell over the last couple of days I decided to call the Onc today. I described the changes-sporadic slurring in his speech, falling over more often, increased loss of sensation in and inability to move his left arm and the Consultant told me to restart him on Dex immediately. Paul has been off the Dex for a long time now and he has never taken more than 8mg a day. The Doc told me to give him 16mg a day until he gets back to me with the scan result which he hopes will be on Thursday. I have given him 8mg this evening so I shall see how he does over the next couple of days and will try to keep in touch.

xx

Hi all,

Not posted for ages but have been reading.  Sorry to intrude on others difficulties but I really need to rant & I know that I'll be understood on here whereas some non-BT folk don't really understand why I'm so angry.

Col went to the GP yesterday - it's finally coming up to 2 years since his treatment ended and he's entitled to apply for his driving licence back.  Unfortunately the DVLA had sent him forms intended for taxi / bus drivers so gp couldn't do anything.  However, he told him that once he's got the proper forms, he would be entitled to charge him £150 for completing them... but as it's him, he'll only charge him £100.  The DVLA then told him that he can't have the licence back that he surrendered - he's got to have a new photo licence so that'll be £40 please - kerching!  Is it me???? I'm fuming.  I could understand it if he'd lost his licence for drink driving or something but how can these people get away with this???  GRRRRRRRRRRRR!

Sorry.  Rant now over.

Love to all

Sue xxx

Dear susiiQ, ask to see practice manager to explain/have a written breakdown of  the charges they want to impose as you wish to take it up with the citizens advice bureau...but seek advice there anyway.

can't believe this place/country at times. You carry on ranting.

PEABS XXXX