We were back at the Royal Brompton Hospital today and have returned complete with a brand new BiPap machine - a non invasive ventilator. It's very compact and will take up hardly any space. We were expertly instructed in its use. Roch had a practice. It's not as noisy as I thought it would be. He doesn't need it yet but it's important that we are both completely au fait with the way it works and how to put the mask on and take it off etc. He thinks the mask makes him look ridiculous but as he hasn't even seen himself wearing it, he is not the best person to judge this. I am here to tell you that he doesn't look at all ridiculous. He did look vulnerable and a little bit scared.
So how does it help? It comes with a simple explanation:
The ventilator is a simple device that acts like a pair of bellows to help support your breathing. You will wear a mask over your nose, or nose and mouth. The ventilator delivers gentle pressure through the mask which helps your lungs to expand. When you use the ventilator, it helps to keep the oxygen levels in your blood at the right level, and helps to get rid of the waste gas (Carbon Dioxide) which you breathe out. This should help you to get a better night's sleep and feel more refreshed on waking in the morning.
We wish it wasn't necessary, but as it is or will become necessary, I do see it as a positive thing, because it will help Roch to feel better and to enjoy life for longer. Its use at night can ensure a brighter, more comfortable day for him. But it feels like a foretaste of the shadowlands to come.
After our session with Adam, the extremely professional, kind and pleasant young man who talked us through its use, we had another chat with Professor Polkey. You remember I mentioned him on the blog before, in pretty glowing terms? He didn't fail us today. Roch is very preoccupied with the issue of how the end will come - or as Professor Polkey neatly put it -"How you will expire". (I don't think anyone has actually mentioned the word 'death' yet). He knew exactly what was on Roch's mind and understood his anxieties. He approaches the issues with great clarity and in a very down to earth way. His very expertise is reassuring in itself. Roch is still adamant that he does not wish for invasive ventilation - given the choice, and if he is not carried off by a chest infection (it happens this way), he would prefer one day, if on 24 hour non invasive ventilation, to have the mask removed and just pass away. According to the Professor, this does not happen too often. But it does happen. It's not illegal, because the patient is simply refusing medical treatment, which is their right and the medical people are very thorough in making sure that this is really what the patient wants and it's not just, as he put it, that the patient has woken up after a particularly bad night, feeling pretty depressed. Almost in anticipation of Roch's next question, he explained that the Consultant (in this case, we're hoping Professor Polkey) will then manage the patient's end of life with pretty powerul drugs, to ease their passing, minimising any distress (Roch is fearful of suffocation).
As before, Professor Polkey is keen to answer any questions, from either of us, but as usual I find I am quite passive at these meetings. It is a subject which I find just too overwhelming. I thanked him, nodded, said I thought he'd been very clear.
When we got home, we were both exhausted and we slept for a few hours. Roch is still resting. I am typing this in the garden, and as I type, I am watching some tiny birds (I think they are coal tits), darting through the branches of our birch tree, boldly zooming in to our new bird feeder (purchased in the New Forest, a few weeks ago) with graceful precision. I would guess that they are watchful for Oscar the Cat (the bird feeder is just out of his reach, of course) who, if they only knew it, is currently fast asleep on 'his' chair in my room upstairs and quite oblivious.
Life goes on. By the way, Professor Polkey did not tell us to 'stay positive'. Thank you sir. I'm finding it a little difficult this evening, I have to say.