My cancer

Hello again minimoo. By the end of the day you will get plenty of information and advice here. Best wishes. Xxx

Come on you lot, sort minimoo out please. Thank you.

Hi minimoo

I have never asked for a prognosis because I would not find it helpful. And prognosis is only ever a stastical average, so not a precise science. I am sure doctors hearts must sink when they are asked because they know what a minefield it is. However, I am sure your oncologist would talk you through it if you asked. As for the DS1500, it does apply to people with less than 6 months to live, but there are people on here who applied for the benefit using the special regs of that form, and they are still here 3 years later. So dont let it cast you down, and if you feel good at the moment, then enjoy it if you can. A useful test ( for me anyway) is to notice changes, and if they are noticeable only over many months, then you are likely to have a while to live. if they become obvious over shorter periods, then maybe time is a bit shorter but could still be a while, and when changes are noticeable day by day, then maybe it is closer to the end. However, all of us no matter how long or short need to get affairs in order ( and that applies to "healthy" people too). So make your will, do a power of attorney etc, and then get on with living with cancer, as the rest of us incurables are. Am sure others will be along soon to offer their thoughts.

x

My oncologist gave a prognosis when asked, but as you can see by the people who have massively outlasted theirs here it is not an precise science. My impression is that they will give an estimate if asked but won't volunteer one. 

I'm trying to live my life as much as possible as if it isn't limited, but my will is sorted and I have lasting powers of attorney set up for if/when they are needed. I have spoken to my husband about when I would and would not want medical interventions, I have spoken about this in much less detail to my children, but I intend to speak to them in more detail.

I think if help is offered it is good to set the ball rolling because it can take time to get things set up. I've not been offered the form so far so can't help with that.

It is always good to read new posts, so don't be shy of posting here, I don't have anything wise to say but I post anyway! 

Hi Minimoo

My DS1500 was offered within the 1st few weeks of diagnosis and initially I had no intention of uptake but then I thought of all the years of incredibly high tax & NI & realised that it was actually MY money. Additional benefits such as Blue Badge, no road tax alongside PIP have helped make this time bearable... BTW - diagnosis in April '20, they started paying in May and I'm still here!!!

Speak to your CNS who will help sort the form then I had to do a telephone question & answer - if no CNS, McM's have a specialist financial team that will guide you and help with any pension related issues etc...

So don't worry about implications, just get your hands on that filthy lucre!!!!

Thank you for your responses. It is a tough one. I find it hard to concentrate for long and i worry about how much there is to sort out after a death. Two close family died of cancer last year and another is in his last few weeks. I will speak to my doctor when I get the chance and see what he says. 

Hi minimoo, speak with a macmillan nurse or specialist on here. Thats what they are for and I am sure they can give you some practical advice, have a go, xxxx

Hi minimoo I was changed from incurable but treatable tomterminal after 2 hospital admissions for pneumonia and pleurisy and lung metastasis, the criteria was that cancer was likely to be the cause of my death within 6-possibly 12 months. I also couldn't get holiday insurance cover without a prognosis which again was 6 possibly up to 12 months. At that time I was deteriorating month by month if not week by week.

I was fast tracked to get the maximum PIP benefit which has really helped specially since becoming wheelchair dependant.

I've found it really helped me to get my affairs in order. My body is being donated to the Hull and York University unless there's a reason it can't be such as infection. Plan B is a woodland burial in an area of outstanding natural beauty. This is what we did for mum, and it's the only funeral I've ever found comfort in. The coffin was cardboard and decorated with pictures and letters from mums children and grandchildren, my nephew said a few words but there was no official input at all, just family and close friends and the pall bearers.

I've filled in an Advanced Care Directive, which is not a legal document but states your wishes such as if you'd like to be cared for at home, in hospital or the hospice. I have a DNR in place because of bony mets in my ribs, breast bone, spine and lungs. I'm a former nurse and resuscitation would be brutal and pointless.

Other than that I've left things up to the family. It gives me a feeling of some control, although I remember being asked to do a birth plan and I'm not sure anyone gets exactly what they'd like! xx

Thank you Tinalay, lots of useful details there. I have a dnr directive, poa, and will. i worry about things like my standing orders/dd, my flat and much more. Living alone and unable to go out  I probably have too much time on my hands to worry too much. Sufficient unto the day and all that. There is so much hope and humour here I am full of admiration for you all and wish I could be more like you all.

Well... You're in our club now!!! Enjoy!!!

You may want to have a word with the financial team at McM's re. s/o's etc... They will probably advise a complete sheet for your solicitor to deal with it all as & when...

But for now - just lean in & enjoy the fun and take NO notice of Norberry AT ALL & especially, DO NOT give him any cookies!!! Hehehe...