hi all. my partner was dx 2 weeks ago with advanced bowel cancer with secondary liver, we have been told it is inoperable but treatable and we are awaiting an appointment to see oncologist with regard to palliative chemo and radio.
we have applied for disability allowance and our mac nurse has told us to apply under the special rules ie not expected to live more than 6 months!!
this has really upset me as no one has mentioned the t word and even our consultant has said he didnt want to go down that road!
mac nurse has said not to panic it is just pamphlet speak and if he didnt have any treatment then his cancer would progress and yes he probably wouldnt live longer than 6 months-which i can see her point.
has anyone else had this said to them, apparently it is for our own benefit and an incureable illness is classed as a terminal one?
just a bit upsetting to hear someone say that, any advise or comments would be welcome, many thanks.
FormerMember
hiya, Sorry that you find yourself here and two weeks is not alot of time to get your head around things. I was diagnosed January and its five months further down the line now and still in limbo land. I asked my consultant if I was terminal and he couldnt really answer me.
My condition is inoperable at the moment, if the chemo works then this may change but it is going to take a miracle. If it doesnt work then they dont have any other choice but to say its terminal. At that point all they can do is try and keep it at bay and keep me as pain free as possible. Once the cancer is in more than one organ its more difficult to cure you. Its not an exact science though.
I have found it hard as I need to make some financial arrangements and at the moment I have a dead line for them which I dont want to run out of time. Makes me sound selfish but as a mother I am being practical. The dla card will come in handy but its so hard seeing a bad prognosis in writing. some people on here have been told six months and been around for a lot longer so there is always hope. Mac nurses are really good though at getting the financial help that you need.
The fact that your Mac nurse has said the T word means that you DLA will be fast tracked so should help you out financially some people live a lot longer than the time they say on these forms. I hope everything goes well for you both. Thinking of you with love
As joanne says it is early days and you both have a lot to get your head round! The Special Rules DS1500 does say that the consultant does not expect you to live beyond 6 mths and this is a stumbling block for many. My hospital has a good attitude. They say the will sign DS1500 for anyone with cancer secondaries because no-one can say for sure how long the treatment will work for. But the DWP know that is the case and will review each claim after 3 years - so even they realise many will survive beyond 6 mths. I was first diagnosed with cancer 19 years ago and it spread 7 years ago and I am still here and hope to be so for a long time to come. The Special Rules claims are processed a lot quicker than normal DLA claims with a lot less formfilling so you should receive it soon.
My husband was told at the outset that he was only being offered pallative treatment and our Mac Angel Michelle helped us get DLA under special rules. I was exactly like you when I read the form. We had been told they hadn't a clue how long Laurence has got as his tumour is a rare one and progresses really slow. Michelle explained that because they don't know how long he's got they can sign the form as its possible he wouldn't live for 6 months but its also possibe he could live for years. All this was just under 12 months ago. We are under no illusions that he will be drawing state pension at 95, but he's paid into the system since he left school at 15 so we are claiming every damn thing we are entitled to.
As what is the difference between uncurable with pallitive treatment or the T word (which I still find hard to say) I don't know. To me it seems like its the same what ever way you look at it. Maybe one of the Mac Nurses on here could clarify.
