We Talk Brain Tumours

Hi everyone

I'm new to the forum, though not to the brain tumour journey.  My husband was diagnosed with a Grade 3 anaplastic oligodendroglioma six years ago and had two lots of surgery and radiotherapy.  Although he recovered reasonably well from the treatment, and was able to return to full time, he is now suffering from  late effects from the radiotherapy and is having to explore ill health retirement.

He will get a reasonable pension, but we will be on a lower income.  I was wondering about claiming DLA, and whether anyone on here had been able to claim under the special rules without an official terminal prognosis?  On the latest report to Occupational Health his consultant said that the condition was incurable, life shortening and the average life expectancy was 5-6 years whereas he has lived for over 6 years.  In the report the consultant said it was impossible to say for certain how long he would live.

I guess this is true for all brain tumours, but we were wondering this preclude him claiming under Special Rules?  We are planning to talk to one of the Macmillan benefit advisors, but wondered what other's experiences were.

Many thanks

Hi Felix the cat

I am sorry to hear about your husband but pleased to see that he has been fighting this illness for 6 years.

My husband had the most aggresive tumour GBM4 and was terminal, life expectancy 3-6 months untreated 12-15 months treated.

Because my husband's mobility was seriously affected (click on my name to see our horrible journey) he got the higher rate of DLA + extra payments (albeit small) as he was in the spec group.

We only got this because the Oncologist or your GP has to compelte the DS1500 (the form to state diagnosis/terminal/life expectancy.

In my experince DLA maybe paid but you have to fall into the categories ie walking/personal care etc.

With DLA you need to apply asap as it is only paid from the date they receive the forms not from diagnosis or when you think yu may qualify.

Your husband may fall into lower/middle rate - take a look at Gov.uk site search DLA and take a look at the q's.

Don't hold back on anything if you decide to claim because you will not get anything - what I mean by that is you don't always like to admit that someone can't do something.

For example, when my husband lost the use of his arm (not knowing it was classed as a disability - because you just get on with it.

I was helping him dress, helping with lots of things (because he was my husband) and with the walking bit you don't like to admit that someone can't walk far.

Hope this helps a bit.  Your husband maybe able to get employment and support allowance or pension credit and you may get carers if you have to help him for 35hours a week.

Worth looking at them all - don't take no for an answer as DWP tend to turn you down hoping you will go away - keep pushing it if you feel that you should get some benefits.

Macmillan also have small grants for help buying washing machines/clothing/bedding/travel costs.

Hope this helps

Ann x

Hi Felix (love cats),

Sorry you have had to post on the site, but good to hear that hubby is another to defy statistics. My wife has a grade 3 astrocytoma and was prognosed around 2 years, that was in January 2003.   Our GP asked me if I wanted him to fast track DLA at the start, but I refused. I suppose I didn't want to accept terminality at that time!  We went through the normal process and she gets benefit for both sections. I think your GP is one to ask as well as the Macmillan nurse. There will most probably be others on here who have far greater knowledge of this than me.

Best wishes to you both

Ann,

Even while I was writng my response, I was betting that you would be the first to answer. XXXX

Hi Ann and Postmark

Thanks so much for your quick, and really useful replies.  It's so helpful to see the different experiences that people have in this journey.

I've looked that the information on DLA, and I think my husband would probably be considered for lower or middle rate DLA because of his memory problems, fatigue and weakness in his right side.  The trouble is getting him to admit his difficulties - the first time he went to Occupational Health to discuss reasonable adjustments, he minimised his problems so much they didn't think he needed any help at all!

I suppose I felt if we were able to apply under the Special Rules, he wouldn't have to go through the process of admitting just how difficult things are for him -  pride I suppose.  Not easy for him asking for benefits when you have always been able to earn a good living, and all the stuff around so called benefit scroungers hardly helps!

Hi Felix, firstly can I say how glad I was to read that your husband is still doing reasonably well after six years with an AO3.  I am just coming up to my two year anniversary in a week or so and its encouraging to me (especially as I am waiting for my scan next month & already stressing).

I get full DLA, my tumour (buttercup) was right frontal lobe and since RT I have suffered terribly with my short-term memory and word recall (you know that tip of the tongue feeling where you know, but can't access it).  The memory problems have lead me to put the gas oven on a few times without igniting it - when I eventually remember or light a gas ring.....BOOOOOOOOOOM.  If nothing else it makes life with me exciting/dangerous!

I dread to think what I will be like if I am lucky enough to make 6 years post RT.  I also suffer from mild panic attacks if I have to go somewhere I've never been before and won't leave the house without someone unless I am walking to my local shop.

I was a pre-school assistant and I know that I couldn't cope with twenty x 2-3 year olds running around asking questions and generally trying to do things they shouldn't.  I find word recall really frustrating and my kids now affectionately call me Dorey !

I was worried when I got the full DLA amount straight away, as I thought you only got that with a year or less to live but my consultant just sent a report on what I'd had done and my diagnosis/prognosis.  Its up for renewal next year (prob cos the prognosis is 2.5 - 3 years).  I hope during the time of cut-backs etc I will still get it as we are a wage down now and I am only 43 with 3 teenage kids.

Good luck.

Dear all

This is the reply that I've had from Samantha Dickson Brain Tumour Trust.

Thank you for your e-mail dated 14/01/11 about the TV series Wild at Heart, and the programme’s portrayal of someone with a glioblastoma.  I understand how misrepresentation of this serious and little-understood illness is both upsetting and unacceptable following Christie's death. We will contact both the programme makers and our patron Hayley Mills to try and arrange an opportunity to publicise properly the reality of brain cancer. f you would like to talk this through further, please e-mail me directly and I can call you at a time that suits you best. Thank you for letting us know about this. Kind Regards....

Love to you all

PEABS XXXX

He didnt have the scan. They wouldnt do it until they could check what clips were used inside his head. The operation was done at a private hospital and the NHS hospital didnt know if the clips were compatable. . He was admitted yesterday after having more seizures. He's back home again now and we wait again! Frustrating (not the word I'm really thinking!)

 Love to everyone  especially  those who understand my despair. xx

Hi Martyn

You were right - yours are short and sweet - mine are always long!

I am at home alot and get bored watching TV so come on here instead or on Ebay

Start a new job soon so won't be on as much

Love to Doreen

Take care

Ann x

Hi Felix

As Debs said - she gets full DLA so perhaps speak to Oncologist/GP.

I can fully understand your husband not admitting to the difficulties he has - we have all been there but as I said, if you do not stress how difficult things are on the forms you may not get the income you deserve to get.

If you are on DLA - I think it has to be full DLA I believe you can also get a blue badge and free road tax - we did.

Every penny helps when you are in our situation.

The blue badge comes into it's own when going to the hospital otherwise you have a long walk when it maybe difficult. 

Take care

Ann