working and receiving treatment

i am about to have my second course of chemo and start herceptin ( first course of chemo last year which worked well) i feel well in myself and luckily only have one secondary in my lung which is much better i am now going to have a line put in and have herceptin and a course of chemo together. i work part time and receive incapacity benifit but my nurse at onocology wants me to claim disability living allowance which i feel i shouldnt get as i see myself as fit and well and able to do everything as usual . i will be on herceptin long term . Has anyone any advice for me on any of this ? SKelts

Dear Skelts, I have lung secondaries and continue to work, fitting in 15 herceptin treatments so far and a few months of not very successful chemo (Xeloda). Like you I was ambivalent about DLA, but was persuaded to apply for it, and my oncologist signed a special rules form. So I now get DLA, and this has allowed me to drop my working hours down. You are entitled to apply for DLA so don’t feel guilty about it.

Best wishes,
Nicky

You are entitled to DLA - it doesn’t matter that you are working…to put it bluntly the whole situation could change tomorrow (I have liver and bone secondaries myself), We didn’t write the rules, but we certainly have paid our taxes and it is a small recognition of the difficulties we have and the extra costs of being disabled by cancer. You don’t have to claim it if you don’t want to - but you are allowed to and should not feel guilty.

Cathy

Hi there,

As you perhaps realise, there are two components to DLA. I am paid at the lower level, which I am happy with and this salves my conscience as I sometimes feel I shouldn’t be getting it, due to feeling fit and well during the past two and a half years or so that I have been claiming, but should my condition deteriorate, I will claim for the higher level with no qualms at all.

Jenny

Hi Skelts,
I am going through the same hesitancy as you about DLA but have asked my onc whether she would sign under the special rules.
I work full time and can get about ok so could not claim under normal cicumstances. But I spoke to the benefits advisor at my local Maggies Centre and she said yes do claim.

I think that if I do fall ill enough to stop working I won’t be in any state to think about claiming. They will review it in three years anyhow so I would say claim now. I am going to claim at the higher end as it is difficult to get it upgraded.

Kate

I think sometimes you are better asking your Gp to sign this instead of your onc.