Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Next step

Maz59
Posted by

There are 2 types of ESA one is means tested the other is called contribution based and is determined by your national insurance payments. I was claiming the contribution based ESA while still working once my sick pay went to half pay. I was then offered I'll health retirement just a few weeks later. I was 58 so could draw my pension and so I took my pension. I had known drawing it would have had such a big effect on my benefit I could have held out on half pay for another 5 months +. But that is how it goes. A colleague of mine who was only 52 did the same but she was not able to draw her pension and gets the full amount of ESA and took her full sick leave entitlement. She is now retired but gets means tested ESA at the higher rate. 

Re the support group all this means is that you are assessed as qualifying for the higher rate. There is no actual support other than financial and no group. 

Good luck with it all it is a mine field. 

The PIP is also rather strange especially the mobility component it is so difficult to work out what is meant by the questions. I used to work with children with Special needs and I always advised parents to fill in the forms as if it was the worst days and I have done that with mine. 

Another one I find annoying is that my husband has had to cut his hours to look after me but because he still earns over a certain amount each week we can not claim carers allowance. 

Over the last 2 years we just seem to have to pay more out while living on less. I do appreciate that there are others much worse off. Friends often don't realise how difficult things can get financially when you have cancer. You still have all the outgoings at higher rates but much less income. 

Maz 59 

Fishtrombone
Posted by

Hey Lass,

thanks for your reply. ESA sounds a bit tricky but I will definitely have to apply for it at some point. I think its difficult to make decisions about leaving work if you don't know if you're going to have enough to replace your wages. 

Fishy xx

Fishtrombone
Posted by

Thank you Maz59 for the heads up on the pension issue with ESA. It's something I wouldn't have considered and like you would have just finished work and claimed my pension. 

I was wondering about the PIP questions. Its a bit tricky with the mobility component as you say because cancer/cancer treatments all cause your mobility and general health fluctuate. We all have good and bad days. So I'm glad I did as you said to the parents, consider as if the most difficult days.

That's awful you cannot claim carers allowance. I don't think we ever can live at the same financial level as we do when working. Money worries are such a distraction when really all you want to be doing is thinking about your health and quality of life. 

Lass
Posted by

Heya, 

The whole benefits system is a nightmare. 

My issue was that I was dropped to SSP at work, and that didn't cover bills. So I was really really struggling, and thought I was going to have to go back to work - which I knew I wouldn't cope with. So that's how I ended up quitting and moving onto ESA.

And financially, and ridiculously, I've ended up better off on benefits than I was in my job. That's how badly paid I was! 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Fishtrombone
Posted by

Well Lass, 

I think we maybe in the same position because I too are on low income and struggle to pay my bills without plunging into the red each month. And I think that all these discussions have helped me decide that it is time to leave work.

I've been holding on expecting some miracle that all this will go away and I can just pop back to work when I'm better and carry on with a barely sustainable wage packet. La de dah.

Not sure what I was thinking because the reality is that I have incurable cancer which has slightly spread even while I'm receiving treatment. So where in this daft head of mine did I think everything in my life was going to pop back to how it was before? lol. 

Thank you to all who contributed to this thread. You've really helped me get a grip and to understand (a bit) the minefield of pensions and benefits. You absolute s

Fishy xx

Tamencio
Posted by

Hi Fishy 

even though it is now a few months since my diagnosis (August) and I know I will not be going back to work. I still sometimes wish I was there or think it will all go back to normal, even though I know it’s silly , I think it is just human.

take care  

Tamencio

Fishtrombone
Posted by

Aw Tamencio, I know what you mean. Its going to take ages for it to really sink in that this is a path you can't return to. 

I've worked for 28 years at the college and it's going to be heartbreaking to actually let that go. In theory I still had another 10 years working there. Getting to at least 30 years would have been amazing.

Time for some adjustment I think

Maz59
Posted by

Glad things worked out for you Lass it is so bad that no one is there to give financial advice once the diagnosis is given. It is up to the person who is ill and often struggling to seek help. The HMRC, Citizen Advice and DWP information lines are a nightmare if you ever do get through you are then so ill you find it difficult to explain things. When I rang initially about PIP I was on chemo and spent most of the call throwing up into a carrier bag. The young man on the other end was mortified and wanted to get rid of me asking me to ring back but as I had already rang several times and been on hold for 47 minutes this time I refused and kept going. 

Thank goodness the MacMillan help line was much easier to access and helped me with the form once I got it. 

Good luck to all those wrestling with this debilatating system we have. 

Maz 59