15.08.2014 Good news

Yesterday our GP called with the welcome news that between my last two scans there had not been any change. No growth. We will still receive visits from carers. We will have to change to a cheaper care agency. From there on we would have to pay for visits of carers, I will still need daily visits because I will be bed bound 24 hours a day.
All donations will be made to our PayPal account. And we want to say thank you to all people who kindly made donations already. 

1 August Assessment

Today, we learned that my case for home nursing care will no longer qualify for NHS funding. If we are going to continue with the same NHS paid carers it will cost 115 pounds a day. It is with Olga's assistance twice a day. Or 138 with complete care from care service. It is crazy. We are trying to review our schedule of care to reduce these numbers. Unfortunately our friend carer  hasn't returned still from Ukraine where she went because of family matters.

26 June Physio

A visit from my physio today. She said there is nothing she can give me that can help me to get on my feet again. So I'm looking to being bed bound (hoisted) for the rest of my life. Rather depressed about this.

6 June

Our GP droped in to see how I'm doing. The experiment with increasing of my steroid dose to 8mg had not produced hoped for improvement of mobility. Possibly it has made things worth. So we are goinbg down to 6mg.

4 May/ Cockermouth hospital

Spent 10 days in the new Cockermouth comunity hospital. Doctors wanted to see if they could improve my mobility by changing my dose of medication. Increase of steroids to 8 mg, they were also concerned about Olga and I trying to cope without any help.They would not ley me return home until they are satisfied with conditions at home. So our front room had to become a bedroom complete with hospital bed on loan from the NHS. We also have a hoist for moving me around. Their intention is to manage my simtoms to make life as comfortable as possible. They do not advise further treatment or operation. they are afraid treatment may make things worth then they are. So for the present I will be bed fast invalid.