It seems that in the past month, there have been more changes in Roch's condition. Perhaps that's also been getting me down. I know it's been getting Roch down.
The nutritionist was here last week. We had forgotten about the appointment and Roch had been up for hours, working at his computer in the kitchen, I had gone back to bed. It was midday and I was dozing, taking advantage of a day off work to get some rest. When the doorbell went and I realised who it was, I was mortified. She probably thinks I stay in bed til midday every day now. I dashed into the shower and joined them as soon as I decently could, wet hair and all.
Roch has lost weight recently. His arms and legs are thinner. He always has a good meal in the evening but his breakfast is not good. Lunch can be a problem if I'm not around, although that's usually only one day a week. The days when I could confidently leave him to heat things up or transfer hot food from pot to bowl or microwave to table have gone. However, we are so grateful to our kind and helpful neighbour, Christian, who is happy to cook lunch for Roch and often stays to share it with him.
Roch never had much of a breakfast on work days, but once in work, he might pop out for a bacon sandwich mid morning. He can't do that now, although he sometimes sends someone out to do it for him. At home, he can peel a banana and on good days he can pour some juice for himself. But too often, breakfast is an espresso and cigar. He says he doesn't feel hungry in the mornings. Nutritionist Mary suggests milkshakes and smoothies. Now, why didn't I think of that?
She probably wasn't judging me, but I am judging myself. Still in bed at noon, and no proper breakfast for Roch. No wonder the poor man is losing weight.
Worse was to come. I had missed the part of their conversation where Mary suggested that Roch start to think about having the PEG fitted. I was shocked. There's nothing wrong with his swallowing. Surely it's too early for this?
For those of you who don't know, a PEG (percutaneous endoscopic gastrostomy) is a small feeding tube which is inserted directly into the stomach through the abdominal wall. In MND the muscles involved in chewing and swallowing can become slow, weak and uncoordinated. If swallowing becomes difficult, people living with MND may eat and drink less, resulting in weight loss, which in turn results in increased vulnerability to infection and further physical weakness. As I said, Roch has none of these symptoms.
Mary explained that it's best to have the procedure whilst the Patient is fit and well. It makes sense, but still it feels too soon to be thinking about this. I guess in my head, there are a number of major stages in the MND journey. Landmarks that indicate inevitable progression and decline. The PEG is one of them. I hate the very thought of it. I sat there in the kitchen with my damp hair, feeling inadequate anyway and tried to look as if I was taking it all in my stride. It was hard to tell how Roch was feeling. I had missed his reaction when she mentioned it first. Damnation!
Mary left some literature for us to read through and for me, it makes grim reading. Like the 'nippy' it belongs, for me, in some far off future, when I will feel stronger, better equipped to deal with it, prepared for the further decline, more able to face advancement towards the inevitable than I am now. But perhaps this is all part of that preparation (I was going to say journey again, but twice felt too X-Factor).
Obviously it has to be discussed with the medical professionals also and it's just been suggested that we think about it but still, not easy to contemplate. How does Roch feel about it? Well, the good news is that alcohol can be administered through the PEG and will not only thereby enter the bloodstream and have the desired effect, but you can actually taste it on your tongue!
The information sheet also tells us that Roch will be able to go swimming when he has a PEG, which is an added bonus as he hasn't been able to go swimming since August 2010!
Seriously folks, how does Roch feel about having a PEG? Quite simply, he doesn't want it. While he can still eat with no problems whatsoever, we'll do our best to keep up his weight. Quite an incentive to eat your breakfast, I'd say, wouldn't you?
And quite a spur for me to make certain that he does.