I was discharged from the Royal Brompton hospital at the end of August 2018 (see Things are Rigged) in a much-improved state, but with two significant changes to my day to day life. Firstly, being fed via the RIG inserted into my abdomen, and secondly, using the ventilator 24 hours a day. Both changes were problematic.
The RIG operation had been carried out with me under local anaesthetic and light sedation, the risk of using a general anaesthetic having been deemed too risky. I’d laid on the operating table and held in the correct position by several wedges and pillows. Everyone wore gowns and what looked like shower-caps (just like on Holby City but without the simmering romantic undertones and passive-aggressive subtext). Somewhat disconcertingly, Polly was also there; they’d asked her to attend the surgery so she could be on hand to interpret my various head and eye movements should I become distressed. The procedure took a little over half an hour and, although a little uncomfortable, was not painful. Until later. I would never need to eat or drink again.
I spent the next 24 hours in an HDU ward on the modern Sydney wing, regularly dosed with Oramorph. I was accompanied by Nat, one of my carers from home. The hospital had agreed to pay my home-care agency to provide one-to-one care by carers with experience working with me to supplement the nurses and HCAs throughout my admittance. This unusual arrangement had come about because I needed frequent changes of position to relieve nerve and muscular pain, as well as needing someone who knew the safest way to transfer me to the wheelchair and from the wheelchair back to bed. Also, since early July, I had been unable to speak and had only been able to communicate using a letter board, a slow and frustrating process. Nat and my other carers knew from experience what I was most probably asking for and so, for the most part, could dispense with the letter board.
The next day I was transferred back to Victoria ward to recuperate and for Polly and my carers to be trained in using and caring for the new abdominal adornment. The RIG is held in place internally by a small water balloon, the water in which needs changing weekly. The stoma (hole) should be cleaned daily and inspected for any sign of infection. And, though not strictly necessary after the first couple weeks, I prefer to have a dressing around the site for added protection. The tube needs to be rotated at least once a week, and the RIG needs to be removed and replaced every three months by a nurse or someone else who is suitably trained.
The other momentous change was having to wear a pressure mask 24/7. There are various types and designs of pressure mask but, as the name suggests, they are all held tightly against the face to cover the nose and mouth, or sometimes just the nose. They are held in place by a web of elastic straps. I had a range of different masks that I used in rotation in an attempt to avoid damage to the skin in any one place. Even so, after only a few weeks, I had a painful cut below my nose and a sore developing on the bridge. Whichever mask I used pressed somewhere that hurt. In the past, I’d had cuts and sores from wearing pressure masks overnight but had time during the day when I wasn’t wearing one. Now there was no relief.
So, there I was, health-wise and stamina-wise much improved, but forbidden to eat and with a face distorted and sore. The situation couldn’t stand. And it wouldn’t.
For a start, I refused to give up eating and I categorically, absolutely, not-up-for-discussion, point blank, refused to give up drinking coffee. There was little I could do about the pressure masks, though. The alternatives were a slow death by carbon dioxide poisoning or a tracheotomy. And a tracheotomy was a thing of last resort, only to be considered if things got a lot worse. Spoiler alert – I have a tracheotomy.