Weeks left

Hello - feel for you. I sort of similar position with shortened time frame which no one can predict. We too have the end of life anticipation drugs at home via District Nurses.   I have found it really difficult seeing my partner sometimes looking quite well, but knowing that it is likely quite near the end. We have just been told to take the end of life drugs away with us for the weekend, in case. 

Our situation is slightly different, although the Macmillan nurse was attached to the cancer centre, we were referred to the local hospice service  - who have a day and hospice at home service plus the hospice inpatient unit. 

The Hospice at home nurses have been out helped us plan things for at home and also discussions about planning the end, it does mean that we have them on 24 hour phone call when at home if needed and they do chase district nurses if necessary, but as my partner is still on his feet the district nurses don't have any thing to do, apart from not turn up when they say they will. 

Having contact with the Hospice does mean we have had a chance to put things in place ahead of time and having had time to think and see the hospice, he has decided that he wants to go there right at the end. 

I dont know if  your hospice service offers a home or domiciliary service but our experience has been really positive. I used to think hospices were just the building you went to at the end, but seems they offer so much more including day services, complimentary services, groups, advice in the home  and things that are about living as best as can rather than being a place to go and die. I am now a hospice enthusiast. 

Wishing you well 

Thank you so sorry to hear your in the same situation.

we have not been given any support from McMillan team as the specialist we seen said everything would be done through district nurses.

it is hard as the specialist stated weeks left and was keen to make a referral to palliative care team but feel maybe we could of still be supported by McMillan team

i had this week off to spend time with her but thankfully theirbhas been no significant changes to her health apart from her saying she is tired more (but she saying this is because she not sleeping well and she is complaining of pain to her head were she had her surgery 

Glad you have got chance to spend time with her. Time does become very precious and hard to slow it down. I wonder if there is some value in accepting and following up the referral to the palliative care team - it might open doors to services and help. Or even asking for information about who they are and what they do. I have come round to seeing that palliative care is a specialist area of health and so sensible to engage with them. The barrier for me was that it comes with having to accept that palliative means end of life and loss and that pain may be a barrier.  A friend last year adamantly refused the palliative care team as refused to believe she would die, and as a result I feel she missed out on having services that might have made her end weeks more comfortable and dignified. 

Wishing you gentleness and kindness for you all