Due to the high dose of 16mg Dexamethasone (which I’ve been taking to reduce the inflammation in my liver), and the fact it is becoming seemingly unlikely that the dose is going to be be lowered any time soon, it was deemed good practice to protect me from the nasty fungal infection of Pneumocystis Jirovecii which can infect people whose immune systems are suppressed. This occurs typically in patients who have HIV but in my case would be from the steroid suppression of my immune system. So it was arranged for me to come in electively and have the drug. Unfortunately this high dose of dexamethasone (a steroid) has wasted my thigh muscles and I now walk with a walking stick. I also feel and look heavily pregnant because of central fat deposition being another unattractive side effect of the drug (along with many others).

The day started weirdly, as I was called by a receptionist wondering where I was at half ten, despite being told that the appointment was at one. This was surprising, as brilliant as the Marsden is, appointments are rarely on time, and definitely not early. Georgie and I were a bit annoyed that it would be another day in the Marsden but resigned ourselves to it. We left encouraged that the day would run smoothly, the receptionist had after all implied everything was running two hours early. After a little bit of effort and speaking with two helpful receptionists we found the right place. It was a little confusing because it was in the private ward. Presumably this is because all the rooms are side rooms which is important for administration of the drug.

Pentamidine, (personally I’d not heard of it), reduces the risk of Pneumocystis Pneumonia by 70%, and is given via nebuliser* so remnants end up in the atmosphere. The remnants can cause bronchospasm in people in the vicinity, so there’s a potential risk of an asthma like reaction to staff and visitors. However this wasn’t explained to us, so when the Nursing staff have to wear special masks and aprons whilst in the room and the patient is isolated whilst having the drug and for thirty minutes afterwards, it is all a bit concerning as to why it is ok to be breathed in by me. Lastly, so the nurse who’s giving the drug isn’t at risk of this at all, the patient is asked to turn on the oxygen to get the nebuliser running themselves.

Despite the receptionist wanting us there early things didn’t kick off until one pm. By ‘kick off’, I mean that they said hi and explained what was going to happen. I’d have a salbutamol nebuliser first to open my lungs and then the drug. Time went on and then we started at half past two. However it was wishful thinking that this would run smoothly.

Georgie and I were both getting hungry and it was running into our Thai food time by then. I had the salbutamol nebuliser and was told that the Pentamidine was on it’s way. That came, Georgie left the room, and I was instructed to turn the flow to 10 litres after the nurse left the room. Within seconds of doing so the tube burst from the plastic chamber and the toxic drug was over my chinos and a nice T-shirt I’d had for my birthday. I was stuck, isolated, knowing that no one else could come into the room, for a while at least. I pressed the nursing bell but this was pointless due to the isolation. I then phoned the ward, trying as always to use the automated switchboard “Wiltshaw Ward” “Calling Mr Willow unless you say cancel”. Do these ever work!? My first thought, what if it’s damaging? Anyway I eventually got put through, via the operator, and explained to the nursing staff what had happened. They were looking for the right masks to be wearing, as they needed more, and I’d have to bag my clothes in a special bag. I texted Georgie as there was no answer “Call Me xxxx” she thought when reading it “I leave him for five minutes….” her first thought was had I had a nasty allergic reaction to the drug. I explained the situation and she was concerned that his supposedly toxic drug was all over me and that no one could enter the room to help. The drug would have to be prescribed, dispensed and collected all over again.

All this decision making took it’s time. I was still in isolation and Georgie was fed up and hungry so I told her to get her favourite Pad Thai from Crown Pub, only for the kitchen to be closed. It was official then that today had become a hospital day, and we had not come prepared. We try so hard to make them interesting with more entertainment than other patients’ appointments, nipping out for food when we can, surprising the staff with Catan etc.

After another hour or so, I reprompted the nursing staff about the drug, they came in and the first thing they said was “it’s not your lucky day”. Pharmacy had somehow put the wrong patient label on the drug. I was promised it would be changed and in twenty minutes I would be breathing in the drug again. Another forty five minutes almost five hours later or eight hours after the reception had asked me to be there, I commenced the drug and it was vapourised beautifully into my lungs. After the wait I got out as fast as I could grabbing some complimentary private ward biscuits on the way, and in my swish green hospital pyjamas, I headed as fast as I could to Georgie, who’d not seen me all afternoon. We looked at each other wondering what on earth had happened, somehow I was left alone for five minutes at an appointment and came back without my clothes!

*think a big inhaler. Oxygen/air is driven through a plastic chamber vaporising a liquid containing the drug you want to give and the patient breaths this in through a mask or funnel.