Hi all
I am well aware now that I would struggle to get and keep a job since being made redundant more than a year ago. I have skin and chest and axilla mets and have had too many operations to mention for triple negative breast cancer, including a double mastectomy and lat dorsi flap recon. I am now on capecitabine, my fourth regime of chemo since August 2012. My onc gave me 2-3 years optimistically last summer, less if cancer spreads quickly. He seems more surprised than I am when a scan shows no organ involvement (yet). My doctor has advised me that she would sign a DS1500, but I cannot get my head around the fact that it is supposed to be used if you will die within six months. I have lost a great deal of my physical health, cannot lift, am slow in movement, have pain renders me immobile and fatigue which makes me breathless and incapable of doing much. And I also have some good days and can take the dog for a slow ‘sniff’ walk, depending on where I am in the cycle of chemo. I will always be on chemo, my onc says, to try and control the cancer spread and prolong my life. In all of this I am very similar to many of you claiming PIP. We all hope and pray to live longer than our oncologists indicate, many of us have ups and downs in physical and mental health, and many us, including me, have worked for many long, hard years and paid into a system from which I am highly unlikely to draw a state pension. But, I still feel I may be doing something wrong, and have strange notions that I am ‘giving in’ if I claim this money. I wish I could say we could live without it but I am using my savings each month to supplement my husband’s income. We could downsize I suppose, but it seems unfair on him to have to do that as well as deal with my cancer. Only all of you know how this all feels and I would welcome your thoughts and input, on either side of the argument.
Best wishes
Bumpkin
I felt much like you but we don’re make the rules x I am also looking at claiming my pensions as a lump sum l would like to pay off my mortgage and have enough left over to travel and sort out everything x I have 2children 13 & 15 I plan to leave good memories behind x let go of the worry over this we have enough to worry about xxx
Hi there Bumpkin, you get PIP in two parts one bit is for your care and one bit for your mobility and it is paid at different levels. It is a bit hard when asked how long have you got to live! I am now passed my sell by date and still going strong. I did my application over the phone talked to a really nice lady but you do get asked how long have you got so be prepared for that! I was asked can you walk 50 metres / 20 metres aided or unaided. At the time I could( though I did get to the stage I could barely get about at all) so just explained how I was. I was awarded PIP at the highest rate but felt awfully guilty at the time as I was still mobile. I even phoned the Macmillan helpline for advice! They said that as my GP and onc had both been contacted the PIP people would go by that and I was fine! I did as I said get to the stage where I had to take to a wheelchair but I am now mobile again with the help of crutches (I have spine rib liver and brain mets) as the brain mets has effected my sight and my legs are a bit wobbly. I can take a short walk now but do get a bit tired. Having the higher level you are entitlrd to a mobility car so we thought why not and went for it! If you have worked you have paid your dues and there is absolutely no reason to feel at all guilty. To be realistic as you said we are all hopefully going to go on for a long time yet but we probably won’t be around to get all our state pension we have paid into so the PIP is only replacing that.We didn’t ask for this illness so there is no reason at all to feel that you are giving up in anyway if you claim, every little helpsThere are not many people who can afford not to work I certainly cann’t. You might also be able to get ESA, employment support allowance if you cann’t work. If you have cancer you automatically get put in a support group and don’t have to attend back to work interviews.I get that as well as I cann’t work at the moment. Have you got any “aides” to help you at home with your limited mobility. I have had grab handles put on the shower, a frame to help me on and off the loo and a high stool to perch on in the kitchen. All little things but all help. and were arrange initially by the chemo nurses. I also contacted our local Macmillan financial advisor who will go through a brief questionaire and work out if you are entitled to any other help. My advice is go for anything that helps we have paid for it after all!! Vicky
“Sensitive question” May I remind you all that you are posting to a totally public forum which can be read by ANYONE using the internet… including “bots” and webcrawlers, every single posting might possibly be found by a search engine. I m retired, but if I was in employment and receivin DLA/PIP I would assume that my employer would be capable of reading these posts.
I am sorry if I seem alarmist but every time someone posts about DLA or PIP I have been hoping that the BCCC moderators would give a warning. As they are unable or unwilling to do so, I have written this post in the hope it may help someone.
Oh for a truly private BCC secondaries forum.
I’m so sorry, Bumpkin - I never intended to discourage anyone with secondary bc from applying for PIP - or (re?)-applying for DLA, whether they are working or not. I am just very concerned that everyone can read the posts.
Please, Secondary BCC team, may we have an official response?
Please can someone explain what PIP is? I have secondaries and Im not currently working as I’m too tired. I’ve been able to receive one of my employment pensions on ill health grounds, so I have the lump sum and a small pension as it was employment before children a long time ago.
I am mobile, but just incredibly tired - I sleep every afternoon. I haven’t asked for any help - I just see my oncologist every 3 months and we discuss my drug regime which I contnue with (letrozole and kadcyla) as there doesn’t seem to be any alternative that would be as good at stopping the spread of cancer.
My husband and I are having a gap year at the moment but need to return to work in September when we run out of money and we’ll do a job share. We’ve never claimed benefits and I’ve no idea at all of what might be out there.
Thanks for any advice,
Jan
Hi Bumpkin, you are most certainly entitled claim PIP, i applied a few months ago and get both parts at the enhanced rate, i am still working but have had to cut my hours down to just 15 a wk as i get very tired and the longer i am on my feet the back pain i get.
I was very interested to what MrsBlue posted about privacy on the forum, i thought only us ladies with passwords could read/post???
i have nothing to hide and what i get i am entitled to but my bosses and work colleges etc do not know as it is my business and do want to share it with them…i havent even told many people about my sbc!!! So i agree there should be more privacy on this forum please.
Hugs Janette x x
Hi Bumpkin
Please please apply for PIPS it is there to help all us ladies with secondaries. Yes it’s frightening because they make you think you have only 6 months to live, but that is rubbish as when you recieve the payment it is for THREE YEARS!!! and then renewable.:cathappy: Also you will be eligible for a Blue Badge and Mobility car we are just going down that route. If possible ask your Macmillan Nurse to fill in forms for you as you do not need to see any upsetting questions and also this makes the appliation quicker.
I have worked all my life from 1966 to 2008 and never claimed a penny but feel I have paid all my dues and now is the time to reap some rewards for having the “bad luck” to be struck with this dreadful disease. so please GO FOR IT and good luck
Many hugs and kisses
Sue
Hi Jenny, my onc or bcn wouldnt fill in the DS1500 form either as i was "not ill enough"so i had to go the “long route” after waiting over 4 months and struggling more with work i rang and asked my GP who was happy to fill in the form for me, less than 3wks later i got it through with back pay. So don’t give up its maybe worth going to see your GP?? How does anyone know whats going to happen with this dreaded disease!!
Hugs J x x x
Aww Jenny thats rotten!! As Helen has said try the McMillan ladies, don’t give up with it you are entitled!!
Hugs J x x
PS ladies, after being informed on this thread about the privacy on this site…or lack of it, i have started to just sign off with J, all you regular ladies will know who i am 
Hugs J x x
I know none of us like to see ourselves as terminal but we do need, I think, to say we have a terminal illness in that we are not going to get better although we can live for years. I have been under the special rules for years, it seems such an unfair lottery who gets this, who doesn’t but don’t feel guilty or superstitious about applying for special rules and always describe how you feel on your worst day. The six month expectancy can’t be ruled out once you have mets, it’s not being dishonest or pessimistic. The thing is there are times when life may be easier but then chemo, anything can change things so quickly and the last thing you will want to do, have energy for is claiming for PIP special rules. Good Luck to all. X
Just an update on my claim for PIP…just found out that i have been granted the basic rate…which is better tan nothing. When i rang to apply i told them i hadnt been told i was ‘terminal’ but was incurable. Maybe to get ‘higher rate’ you jsut say yes to the ‘terminal question’ and then itsup to your Dr whether or not he signs the DS1500 form??. Anyone thinking of applying please try…my application only took a month.