Hi cada ...

I answered your other post ... and hope you get some others on here with more advice too .. can't believe how you've been treated ... try Marie Curie as they help through the night to give you some respite ... don't give up ... there's financial adviser at McMillan too ... he will help find what benefits you can claim ... please keep trying ... Chrissie x

Hi cada I’m sorry to hear this & thought I’d reply just because my dad has SCLC & was diagnosed November 17 which had spread to liver and lymph nodes in neck (I’m not sure if it’s anywhere else) my dad ONLY lets me look after him which can be difficult & tiring (also isolating) we’re not as far along as you but Im sure you know as well as me this is an aggressive cancer and we’re on the same road here x 

As well as phoning McMillan & Marie Curie maybe you could try your local councils adult social services department? They should come out quickly and do an assessment offering you aids & help within your home? It’s very sad to read how unsupported you are? I am scared of the future, I have 3 kids & 2 part time jobs (as well as the emotional upset) & I thought when I need it I’d been surrounded by professional support? Sending virtual love & strength x

Hi Kayleigh...

Just a though and really sorry if your happy with things .. but my partners wife, died of Brest cancer 16 years ago ... she would only have him care for her ... which he did willingly as he adored her ... 

But he never got even a day to his self ... his life for two years was caring 24/7 for 2 years ... he even had to stay with her when hospice took her for weekend to sort out pain meds ...

But after she passed, he was mentally and physically exorsted ... he was lost after as he felt like he went from 24 /7 to nothing and he fell appart ... well now I have same breast cancer as her ... but I've made sure he doesn't do much at all .. my other family have come along with me, and no one had too much .. and I've told him, i want a hospice, if ever I'm in that possision ... 

So please take time for you ... you are only human and everyone needs a day off to have time for themselves. . It's not selfish, it gives you strength to start again .. love sometimes is saying you need to be you every so often ... your kids still need your time too ... 

I hope this makes sense ... you sound amazing .. and sending you a big hug .. Chrissie x

Hi Everyone, thank you all for your suport and advice.  Unfotunately due to our small work pensions we are not eligible to claim any benefits other than the Attendance Allowance.  My husband and I have worked all our lives and my husband retired in February 2017 looking forward to receiving his Old Age Pension and getting our neglected garden in order, but life had different plans.   I know I will cope and will get through this very difficult time.  I just need to ensure that his last days are spent where he wishes and he is pain free and at peace, it is causing him some anxiety being at home but I will just have to keep pusing the medical people to grant him his wishes.

Love and light to all, kidness and love with see us through xx

Thank you ... That's so nice of you ... I get so much back on here too ... I've got an amazing family ... We hold each other up ... And esp now my sister's dementure is really sad for us all ... 

I've always been brought up to have a sense of humour in everything and that has seen me through so much ... 

You are so wonderful and I hope your dad does come to stay with you soon ... It does seem to make sense ... He's probably thinking it's easier on younot living with there ... You know my mum was with me all the time ... Like you coz I wanted her with me, not because I had too ... 

But please still take time for you when you need it ... There's times we all need a bit of down time ... So take care and sending you a vertual hug ... Chrissie  x

Oh that sounds about right ... Working all your life doesn't count for much any more... Have you tried .       P I P NOW DLA is stopping , I don't think that's means tested .. still must be some help out there ... Did you try McMillan ... There may be something you haven't tried ...

So cada I've got my fingers crossed for you ... And always here when things get overwhelming .... I can't take your problems away but can be a shoulder to lean on ...  And kayleigh85 is here for you too ... 

Big hug chrissie x

Hi cada

I'm really sorry to hear about your husbands illness and can only imagine what you are going through together. 

I wasn't sure from your post what help your husband needs from you day to day. This can be important. I am a social worker and there are several avenues here.  

Firstly if your husband has been given such a short prognosis it should make him eligible for full continuing healthcare via fastrack through the NHS. A medical professional has to complete the paperwork for this so you would not be burdened by it. This would cover carers coming in to the home to give your husband help to wash and change clothing, medications, eat and drink, and managing toileting needs. Speak to your district nurse to ascertain if your husbands needs have reached this level. If not get in touch with your local adult social care department. There are 2 assessments you need to request. The first is a care act assessment for your husband and the second is a carers assessment for you. If the social worker feels from the info that you have given them yhat your husbands needs should be fasttracked through the NHS they will tell you. They may also offer to make a few calls to ascertain gor sure whether your husbands care and support is going to be met by health. This is what i would do to ensure you and your husband are supported. 

In addition the attendance allowance shoulf be applied for under the special circumstances proviso. What this means is that the huge firm does not have to be completed by you. Just a short section and your husbands consultant completes a section confirming his prognosis. This form aldo gets priority processing by the DWP.

I Do hope you are able to get the help you need to get through the upcoming weeks so that you can concentrate on spending quality time with your husband. X

As others say, there really should be more support than you are receiving - I suspect varies considerably by Post Code. This lack is what truly worries me re my wife, who will be home soon and sooner or later reach this position. I find ".... despite his wishes to die in the Hospice, the medical teams say that this is not n option at the moment and we have to wait for his symptoms to worsen, despite his deterioration day by day." the most alarming. Are there not private hospices that WILL take those willing to pay?

My deepest sympathy to you.

PS Having followed the (very helpful) reference above to "full continuing healthcare", I am more optimistic. The NHS web site info is quite comprehensive and relatively clear. Worth pursuing I think.