Today I met with the MacMillan nurse, who was excellent.
He undertook to query the radiotherapy outcome and ensure that Social Services and possibly a district nurse service are put in place before FL comes home.
I asked for the truth. He said the Haematology doctor we have been seeing this week had mentioned to him that she was disappointed that the Consultant had not been clear with us.
Yes, this is the end of the road.
It could be days, weeks, perhaps even months… but most likely weeks.
A lot depends on FL avoiding infections. He will require blood transfusions probably every two weeks and the MacMillan nurse can try to arrange for those to happen in our local community hospital to make it easier on FL. The journey from the farm into the city can be very stressful, particularly in winter. When it comes to the point where he needs end-of-life nursing care this could also be in the local hospital.
I told the MacMillan nurse about my work position and he is going to refer me for a proper talk with an expert on employment and benefit rights. He said not to talk to my boss yet, until I am sure of what I want to do. He said if my job is not the centre of my life, I might regret continuing to prioritise it over my last chance to be with FL: “You can always get another job, but you can’t have this time with FL again”.
I was doing so well at being brave until he said that!
He was going to see FL today or tomorrow to give him the chance to talk things through with someone who is not me.
He also advised me to consider asking my GP to sign me off work to get some time to rest and stay strong. “In the real world, outside of here, that is what people do and it is entirely reasonable!”
When I got back to the ward, the staff nurse asked to talk to me and we discussed the help FL needs to manage at home if / when I am back at work after the holidays. She said it will be quicker to arrange with MacMillan involved.
Our aim is to get him home for Christmas.
All very much more positive than yesterday, despite the “news”.
Continue sock A by knitting 16 rounds in the color of your eyes.