Hi Inula.  I'm so sorry you are having a bad few days. I too have 'incurable' cancer and like you and your hubby generally manage to get on with my 'new normal' life. However, be prepared for the down days too because they will happen and all we can do is kind of go with it and know that they will pass. I am lucky to have met an online buddy here who is in a similar situation to myself and is willing to listen to my fears when they hit me - I am sure you will find the same support.

Just a practical point...... your hubby is definitely eligible for PIP at the higher rate with his diagnosis which is around 130pds (can't find a pound sign on my kindle!) per week.  If you contact the McMillan nurses at your local hospital they will apply for it for you (well mine did anyway) and let you know of any other benefits you may be entitled to.  Definitely free car tax when PIP is claimed! 

I hope tomorrow is a better day and at some point your hubby can feel he is living with cancer and not dying from it.  Always here for you, take good care xxxxx

Hi Inula,
Sorry to feel you are having a few down days.  It is so hard to put a bright face on 24/7.  Just a suggestion, do you have any provisions in policies for income protection due to ill health or tpd -total and permanent disability?  If so you are able to get financial assistance from the companies.
We were able to draw on hubbys superannuation as he was 56 and no longer working due to the situation.
Darling Max is a wealth of knowledge so follow her suggestions.
Take care
Kathy x
 

Hi Max

Thanks for your reply. You are so kind when you already have so much on your plate. I have woken up feeling a little better today. I have also got a couple of buddies on her but Im reluctant to moan like crazy to any of them when I dont yet know them terribly well.

Unfortunatly my husband doesn't qualify for PIP at all. As I'm the 'little woman at home' (yes we do still exist!) and my husband is the bread winner the first practical thing we did on learning of his diagnosis was to contact macmillan for advice on benefits and I have since had a 2nd conversation with them to clarify.

We have been told that to qualify and get a claim for PIP  fast tracked we would have to get a special medical report from my husbands gp or oncologist stating that he has 6 months or less to live. The other way to get this benefit is to wait 2 (os 3?) months then claim but I was told that my Husband would need to prove an inability to look after himself and need lots of support and care which he doesnt need right.

As for getting that special report... That just isnt going to happen. We havent asked how long my husband can expect to live with this awful disease and nor do we want to. I would rather take each day as it comes and enjoy what time we have without having a noose hanging round our necks. The macmillan benefits advisor did say that lots of people live and claim PIP for much longer than 6 months but psychologicaly knowing his prognosis beyond incurable isnt something either of us can cope with. I think what set me off last night was watching one of these benefits street programs. It just made me so angry that people can get benefits when they have paid s*d all into the aystem yet we cant get a decent amount of help at a time when we really do need it. We should be packing a lifetime of experiences and love into whatever time he has. Instead my husband has gone in to work today just part time to get a bit extra cash and Im looking at doing some cleaning for a few hours a day because we will barely be able to exist of sick pay (which we calculate to be around £70 a week after tax) never mind have any cash to do anything meaningful like have days out. I suppose are lucky because he has a small armed forces pension but even so its barely enough to survive on.

Very frustrating!

Inula x 

Hi Kathy

thanks for your kind words. Im feeling a little better today. Not quite so hopeless. Husband has gone to work and is hoping his employer will allow him to just work mornings until his treatment begins. Once his treatment starts I will be looking at doing cleaning for a few hours a day which will being in a few extra quid. Our daughter is already putting cash to one side and ahe would be furious if she read how Im fretting about money (sorry chick if you are reading this) We will ask for a hand out from her if we have to but would rather manage as best we can.

It seems incredibly sad and very frustrating that help is actually out there in the form of PIP but I do wonder how many people miss out on a valuable benefit that they are entitled to because they cant cope psycologically with asking has he or she got 6 months or less to live.

Inula x 

Hi Inula ......

I am sorry to contradict what you have been told by McMillan about PIP but they are not correct.  There are 'special rules' for those with a terminal illness - I have emailed the CABs website page to you because I dont knpw how to put you a link on here.  I agree that the guidelines are a 6month prognosis but a guideline is ALL it is and you are not penalised if you live beyond this  -  I have lived 3yrs so far and spoke to Gov.Dir last month and had no problems whatsoever.  My GP filled in the necessary forms for me and I told her I didnt want to know how long I had to live also. She said no-one can predict that anyway and put 'unknown - but incurable' in the necessary box.

Maybe it would be worth visiting the local CAB to help you fill in the forms, or your GP, if your McMillan nurse is not up to speed with the 'special rules'.  You know my email address if you have any questions.  Take care x

Good evening Max

once again we are in your debt regarding helpful information. I read the link you sent but thought you had missed my point that we really dont want to put a 6 month label on Neils life expectency. I should have known better!  You very obviously hadnt missed the point as you were in the 'dont tell me how long I've got' bracket. We will certainly consider making a trip to Neils gp to see if he will put incurable/unknown in the relevent box. Thank you once again for your help. Makes me wonder how on earth people manage on their own without helpful virtual friends.

Warmest wishes

Inula x 

Hi Inula

I know I have e -mailed off forum but really sorry that I missed this thread. Just wanted to add leverage to what Max has said.  Hubby qualified for PIP and his consultant was happy to send out form suitably completed and signed. We were never given 'life expectancy dates' as his particular cancer was so variable but its the 'incurable' that counts here.  Its hard to accept that you should have to go this route to help financially (especially for our menfolk) but, and its a big but, this is an entitlement and one your husband has worked hard for. I really hope you can see a way round to getting the necessary piece of paper . Once its done you can get on with your 'new normal' lives.  All my  hubby had to do was repeat the application yearly and there is no charge for getting the form signed.

My heart goes out to you as its a b....... emotional rollercoaster but getting what your husband deserves can take away a little of the stress.  Sending big hugs and will chat soon.  Jules x

Hi Inula.  I certainly haven't missed your point honey - I know how you feel on that score and I am sure 99per cent of people feel the same.  As my GP and oncologist both say, even with their knowledge, it is impossible to predict - who knows when anyone will pass whether they have cancer or not. I learned that as a teenager when my mum died suddenly of a heart attack.  Please don't throw away the money you are entitled to, and have paid towards all your working life, because of one irrelevant box!  It will make a big difference to your income and is not means tested - so hubby can still do the odd day at work when he wants to.

I really hope you have had a better day today.  It's been lovely weather here in suffolk, so Alfie got a long walk on the beach and a biscuit at the seaside cafe.  Am off to London tomorrow for my 3wkly chemo on Friday, so am hoping to get a last minute ticket for a show - really fancy a bit of singing!  Will be there next week too for an appointment and the week after for a nanoknife procedure on my liver tumours. So lots going on this month!  Does hubby have any dates for his treatment yet?  

Look after yourself and will be in touch in a few days. Hug to hubby x