There May Not Be A Cure

On Saturday we drive north  - deep into Devon and sheep country. We drive through sleety rain and blustery winds.  The car temperature gauge says it's 5 degrees.  We are heading for Barnstable but I'm hungry so we divert to South Molton. I'm cold so don't want to wander around and we dive into the first restaurant we come across. Which turns out to be gem. An old hotel called Stumbles. Excelllent, fresh, well seasoned - haddock and chips/mushroom risotto. Friendly. Easy to feed Robin discreetly across the table.  I want to stay for dessert but Robin is tired and wants to go.

First thing this morning I phone the MND Society. They have a branch in Exmouth and I speak to a cheerful, helpful and matter of fact woman on the other end of the phone. She says,

 Have a bit of patience and wait for your appointment with the Consultant Neurologist in two weeks time and if it does turn out that Robin has got MND you'll be inundated with support. 

Which makes me feel a lot better. Although I'm still not sure if the Consultant will want to stay with his original diagnosis and offer one more trial of IVG. It's just that Robins' slurred speech and nasal hoarseness  and odd breathing and coughing  and increased loss of movement in his arms and unsteadiness on his feet in the last 3 months make me think it's more likely to be MND. 

But we just have to wait which I'm not good at.

Later there's more waiting  in the queue at the hospital for a chest X-ray. Luckily I remembered to bring the iPad so I hold it open on Robin's knee and he plays a game. But he keeps touching the wrong key as his fingers on his left hand won't go where he wants them to.  We don't have to wait too long and afterwards head back to medical outpatients for a spirometry test. She says the results could take 2 weeks.

This afternoon we drive to Sidmouth . The car temperature gauge says it's 19 degrees. The sun burns my leg through the window.  During  Robin's session with our lovely hands on healer, he coughs and yawns and sniffs and takes takes deep and shallow and irregular breaths, and says his eyes hurt.  She says she can't calm his breathing but his energy is more peaceful. He says he can feel the energy moving through him at the time but doesn't feel any different afterwards. But he loves coming and she is very good for him.

On the way home we stop at Otterton Mill for a cup of tea and apricot flapjack. We sit outside and I feel the sun hot on my face for the first time this year.   Although I can't really believe it myself, in the last few days I've been talking to Robin about the idea that his nerve disease may be worse than we thought. That there may not be a cure.  That although no one can predict it, he may not live as long as we thought. That I may not be able to go on looking after him at home if it gets bad. He says,

I know. I've thought that too. But we'll see how it goes.

 I tell him about a Living Will. I think he understands. Luckily I'm wearing sunglasses so he can't see me crying.