Something To Keep Him Here

The nice South African consultant with the kind eyes says that Robin's symptoms indicate Motor Neurone disease not Multifocal Neuropathy. He says in his heart of hearts he  always thought it was but had to follow up the results of the tests which showed it could  have been the other.

He asks Robin if his hands responded to the treatment. Robin says a bit. The consultant looks at me and I shake my head. They've got worse. But he says to honour his pact with Robin he will offer him one more round of IVG  treatment in hospital. But he will also contact the MND nurse specialist who will open up the door to loads more support.

He shows us the X-ray of Robin's lungs and some damage to the nerves in the right lung which explains his shortness of breath.

He says Robin is only one of three or four people in the world to have two such rare conditions. That MND ( his type is Progressive Muscular Atrophy affecting the lower neurones in the spine) doesn't usually occur in conjunction with his type of FTD. He says that makes him very special  - not necessarily in a good way. But special.

I ask if it will affect Robin's legs. He says yes. And he may need to be fed through a tube into his stomach. He looks at me and says it's something I could do easily - change the tube etc. He doesn't know me very well then.

He asks if we have any questions. Robin says, 

Am I likely to die in the next few minutes?

He says,

No, unless you are struck by lightening. But that's a brave question.

Of course he can't give a prognosis. But he did say it had progressed quicker than he expected.

Our wonderful archangel MC sits there with us and makes notes and asks very pertinent questions while my mind swirls into mush.

Afterwards he drafts a letter to our GP and the team of OT's and Physiotherapists and community nurses and asks for a meeting to organise  Robin's care and what to do about adapting the house. I couldn't have done this without him.

He rides off on his bicycle from the hospital and I drive us into Topsham for lunch in the same cafe where we went in December 2010 after we got the diagnosis of Robin's Semantic Dementia.

 But  before I drive away I ask Robin if he understands what it all means. That there isn't a cure for the  disease he has. And he may not live for as long as we thought. 

He says, Yes, and I may have to go into long term care.

But  he also says that his arms could potentially get better.

We sit in the cafe in Topsham and I cut up small pieces of his open toasted sandwich of stilton with fig chutney and walnuts and feed them to him on a fork- a hungry bird.

I eat my horrible tuna melt sandwich - tasting nothing. Gagging on the thought of what  darkness stretches ahead of us. 

Smiling at the man beside me who says that now he wants a chocolate brownie.

I wish there was something else I could give him. Something that would last longer than a few sweet mouthfuls. Something to keep him here a bit longer. Without hurting so much.

A few days ago.

October 2008