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We want to hear from you

33 REPLIES 33
Carolyn52
Member

Re: We want to hear from you

Glad waffles you have got the pip too ..makes quite a lot of difference and means a few little extras and less worry. With winter coming on and heating bills ..it will help with that too.
Xxx
Waffles
Member

Re: We want to hear from you

Yes EJ, I was the same. I answered entirely honestly. I won't apply for a blue badge though as I don't need one just now. xxx
EJ81
Member

Re: We want to hear from you

Great news waffles. I found the mobility component a surprise as I answered all the questions honestly and was not bad when I applied. Not bad now either actually! All I can think is that it is a stock response to secondaries xxx

Waffles
Member

Re: We want to hear from you

Hi everyone,
Just got word to day that I have been awarded PIP with the enhanced mobility. I would never thought to apply for had it not been for the advice I got on this forum.The MacMillan adviser did everything for me she was lovely. I must admit I wasn't expecting the mobility component and I feel slightly like there's something the doctors aren't telling me if it was awarded so readily. Anyway, it takes a weight off my mind when it comes to financial matters as I had to cut my hours at work recently. Thanks again for your advice.xxx
EJ81
Member

Re: We want to hear from you

I've bumped it up for you as it has slipped down a couple of pages xxx
LouBoo
Member

Re: We want to hear from you

Can anyone let me know where the PIP thread is hidden please?!

Thx x

Waffles
Member

Re: We want to hear from you

Hi Helen,
Thanks for your advice. I'm not sure if my hospital has a MacMillan advisor but I will phone their help number to find out if I can speak to them locally. I will ask my onc to sign the PIP form too. xxx
HelenAquarius
Member

Re: We want to hear from you

I asked my GP to sign the DS1500 form, he said he'd rather I spoke to onc. I asked onc and he said of course, it doesn't mean you only have 6 months but you deserve every help you can get and they won't come knocking on your door in 6 months if you're still here. So sounds like generally they are willing to sign the form. I had got the form from Macmillan advisor in the hospital and she took it and phoned me to as wet questions and sent it off for me. Brilliant service. 🙂

Waffles
Member

Re: We want to hear from you

Thanks for your advice ladies,
I think I'll give it a go. I do work, but my hours have been reduced due to cut backs. It would be nice to not have to worry about money.
Best wishes xxx
EJ81
Member

Re: We want to hear from you

Waffles it reallyis worth applying. I look at it as six months if I wasn't treated and gp was happy to sign the ds15000. It really has helped to take the pressure off. Have a look on the PIP thread. xxx

Stillhere
Member

Re: We want to hear from you

Hi Waffles, I'm no expert but I think that everyone with a secondary diagnosis can claim PIP. Like you, I heard about it on this forum but didn't think I would qualify so left it for a few years. Just recently I started on a clinical trial where there was a nurse practitioner. She told me that life has dealt us an unlucky card and we were entitled to these payments.

I thought about it and, with the rationale that I won't be claiming state retirement in the future, decided to go for it. It makes a difference! I was lucky because my hospital has a welfare officer that made the claim for me but I think a GP can do it? Someone more knowledgeable might add to this. Good luck!

 

At the moment I'm using mine to cover the upfront costs of the clinical trial as petrol and parking costs are high. I do get these reimbursed a month later. We also have little treats like a meal out. My darling hubby has been supporting me for 21 years with my cancer roller coaster, he deserves a little spoiling!!

Waffles
Member

Re: We want to hear from you

Hi all,
It seems like everyone gets PIP except me. I have liver and bone mets. I still work and can do most of the duties I did before except heavy lifting.I seem to be responding well to my present treatment. My pain is largely under control thanks to medication. I ' m not able to go to the gym but I can walk unaided although not quite as far as I used to..If I over do things I do feel a bit achy after.As far as I know, I am expected to live more than 6 months. I haven't applied for PIP because I assumed I wouldn't get it.
Am I too 'well' to get PIP or should I apply anyway?
Best wishes xxx
daisyjane181
Member

Re: We want to hear from you

I was diagnosed with secondary bone mets in May and was awarded the higher rate of pip. This enabled me to get a motability car plus blue badge and I've also applied for a bus pass. This will help enormously and I'm very grateful to get this help albeit I wish I wasn't in the position to get it!!

EJ81
Member

Re: We want to hear from you

I was earning decent money as a teacher 3 days a week and had to go on sick leave while I had mx and first two types of chemo, both of which made me really worn out. Being able to claim ESA when my sick pay dropped was really helpful as I am nowhere near pension age and we had moved house about six weeks before my secondary DX so had the mortgage to worry about. I was encouraged to claim for PIP which I did, and was granted higher payment and mobility. I also got a blue badge which has saved me a fortune in hospital parking and means I can drive when I'm too tired to walk into town like I used to.

I later was forced out of my job so knowing I had that income was really reassuring. I now work part time as a teaching assistant so don't get ESA any more but having PIP meant I could take a lower paid job which is far less stressful and demanding.

 

Skippy
Member

Re: We want to hear from you

I get pips was only diagnosed in May waiting still to hear of the esa and yes it is s big help especially as I can't work now and it's s relief to know there is some kind Cuming in
Blanna
Member

Re: We want to hear from you

Hi, I've just been awarded Pip too. I'll probably use it towards getting a cleaner as my house is a mess and gets me down. So to have this is a big relief. 

HelenAquarius
Member

Re: We want to hear from you

I've just been granted full PIP. It is equivalent to the money I have been earning having a lodger. The lodger moved out recently and I am relieved that now I don't have to have one. Lovely as she was, when you are feeling rough and want to wander about undisturbed in your nightie, and even have a cry, you know you will have complete privacy. Helen  

Carolyn52
Member

Re: We want to hear from you

I have pip now and although I'm retired the extra money does help with extras needed when undergoing treatment and hospital visits etc.
I'm able to have a chiropdist to the house now and always buying extra lotions and potions to help my well-being.
So ..don't be afraid to claim it if you are dx with Mets.
truffle_shuff
Member

Re: We want to hear from you

 Hi All,

 

 I have been debating all week if 

 I should finish work, its early days for me with secondary in hips,  ribs axilla  effecting use of arm, and unknown in one lung.  I finished work after mast 6 years ago and took my pension then, retruning to work  for 3 days,  i have been  on sick leave fro 3 weeks after  radiotherapy. cannot see how i could get back to normal for work, hope I do as I am 6 years away from state penshion.  

 

Thank you for this thread  It is very informative.  

 

keep well all .

 

 

 

JulieD
Community Champion

Re: We want to hear from you

Getting motability car (even though I  don't drive, my partner is my nominated driver) has been really helpful. I  can get to appointments more easily, it also means we can go out as I  find public transport difficult.

 

The money means that I don't have to worry so much about things I  might need or like to make my life more comfortable .For example I  had my toilet replaced with a higher seated one which is easier for me. I  get very hot and don't worry so much about the cost of using an electric fan .... these small things make a big difference.

 

My partner who ha become my carer is having an operation, some of my Benefit money will pay for a cleaner during that period.

 

Without the Benefit money I  would be able to do less, be more isolated and would worry more about being able to afford things

myplace
Member

Re: We want to hear from you

Hi Lizzie

I have secondary and receive Attendance Allowance.  This is very helpful and it allows me to pay someone to clean for me and I dont have to worry about parking charges for hospital visits.  I can also get a taxi when needed. 

Marirose
Member

Re: We want to hear from you

Hi emptypaces

Welcome to our forum. You have entered the wrong thread you need to be in the Bone mets-please join in. You will find lots of ladies to give you support in this thread. Look forward to seeing you there.xxx

empty spaces
Member

Re: We want to hear from you

Hi, i used to come here when i first got breast cancer in 2007, just over two years ago i developed lung nodules, and last week found out that a recent scan has shown up marks on my left hip, so, its into the bones now.

So a big hello from me, and i look forward to joining in the threads.

Marirose
Member

Re: We want to hear from you

Hello Cathrine

I am able to now afford to buy extra equipments to enable me to get around better creams and treatments to help with side effects and most of all therapies to help with self esteem.

I hope this helps

Catherine_BCN
Moderator

Re: We want to hear from you

Thank you Scratch

scratch
Member

Re: We want to hear from you

Hi the money helps towards heating and electricity.especially in the winter..also as I'm very limited on activities..the odd lunch out.even more grateful as not old enough to claim state pension ....
Catherine_BCN
Moderator

Re: We want to hear from you

Hi everyone thanks so much for your responses, I really appreciate it.  I was wondering if any of you could tell me if, and how much, being able to claim benefits has made a difference to your daily life living with secondary breast cancer? For example, has it relieved any worry, or helped you continue to do things you need or enjoy doing? 

 

Catherine

CNS Secondary Breast Cancer BCC

scratch
Member

Re: We want to hear from you

Hi I didn't feel guilty claiming as I was very ill.and have worked all my life since I was 15.the only thing that stopped me working is my illness.my Dr filled out the ds1500...sharon.x
Marirose
Member

Re: We want to hear from you

I have MS and applied for motability when I could no longer walk very far and I was awarded the full rate indefinitely.I was refused Disability Living Allowance because I could do most things for myself.

 

When I found myself with secondary cancer everyone was saying I should apply for P.I.P it took me 2 years to apply. That was June 2015 I then recieved a letter from ATOS Healthcare informing me that I would have to be seen by an assessor.August I had a letter to say someone would be coming to see me in September.

When she came she was quite nice she was an x-nurse. I answered the questions as honest as I could as it was I was feeling quite well at that time not as bad as I had previously.

 

October I was awarded my full motabilty until 2018 and Personal Independence Allowance at standard rate from November payable in December.I will be reassessed in October 2016

 

I felt guilty very claiming 

 

 

JulieD
Community Champion

Re: We want to hear from you

I was retired on health grounds several years ago (non BC related). I was awardeded Incapacity Benefit, this later changed and I had to apply to transfer to ESA which I got, am in the Support group so don't have to go and 'sign-on'.

 

When I got my Secondary dx a Macmillan nurse suggested applying for DLA (Disability Living Allowance), I wasn't sure, particularly when she suggested appling under 'Special Rules' (form DS1500) which basically says you are expected to live for 6 months or less!! She explained that this was just an arbitrary figure and didn't mean I was actually going to die (well nearly six years on, I'm still here!)

 

I did apply under 'special Rules' which also meant I didn't have to fil lout the second half of a very long form. I was awarded the benefit at it's highest level so have been able to use the Motability scheme using the mobility component of my benefit to pay for a leased car.

 

Just before Christmas 2015 I had a ltter saying DLA was stopping and I'd need to reply for transfer to PIP (Personal Independence Payment),. I contacted the benefits advisor at Maggies's online who calmed m down and 'talked me through it. Basically I had to get my GP to do another DS1500 and ring the PIP office telling them I wanted to claim under Special Rules, they then asked me several questions about mobility etc. This acted as my appliction. In the New Year I got confirmation that PIP had been granted at the same rate as my old benefit (Phew!), for some reason for a shorter period than the usual three years, but at least I got it - i know they have tightned up and it's harder to get than DLA was.

 

That's my experience, hope i helps.

Carolyn52
Member

Re: We want to hear from you

It was suggested I applied for PIP as its not means tested and they give special allowance if you are terminally ill. 

I havent been granted it but I think that is the first port of call for allowances etc.

Carolyn 

scratch
Member

Re: We want to hear from you

Hi my husband had redundancy.and I wasn't working.a couple years later I was diagnosed secondary breast cancer.by then his redundancy money was gone.i went to cab.as couldn't get much help from d.h.s.s...i then got e.s.a. And disability benefit.free cartax and blue badge.this has enabled us to survive...
Ceggy
Member

Re: We want to hear from you

Hi Lizzie
I only joined this forum today but if I can help in any way please feel free to ask. I don't fully understand what you are asking but I am on PIP and ESA if that helps?
Regards
Carl
Catherine_BCN
Moderator

We want to hear from you

Hello everyone

 

I am the Nurse Specialist for Secondary Breast Cancer here at BCC.

 

I wondered if I might pop in to ask a question.  We are writing an article about benefits and finances for our next Vita magazine.  I wondered if any of you have claimed and feel it has had a positive impact/helped in your daily life? When we do the articles I always feel its more personable if there is a quote from someone who has/is experiencing the same as the reader.  Would anyone be able to give me a quote to help?