It has become fairly monotonous for me, but I thought for posterity I’d talk through an average day in the life of the little room which has become my temporary home.

6am – a health care assistant (HCA) walks in and wakes me up to perform ‘OBS’ (presumably short for observations) during which they check pulse and O2 levels using a clip on my finger, my blood pressure with an inflating arm cuff (I have my own one at the end of the bed which they connect to the machine) and my temperature using a machine which measures through my ear.

these ‘OBS’ are performed at roughly 4 hour intervals throughout the day and at about 10pm before bed.

6:30am – I am again woken by the nurse who takes a blood test. The procedure involves specially packed gloves, a couple of flushes including heparine to prevent clotting in my Hickman line and about 2 vials of blood.

7:30am – The main light is turned on and I am offered breakfast. Normally at this point (especially having a headache), I’m ready to say Pi$$ off! but my actual response of ‘porridge, orange juice and hot chocolate please’ is a little calmer.

8am – I raise the head of the bed and start to eat my cold, tasteless, instant porridge.

8:30 – a team of HCA’s come in to change my bed so I get out and sit on the chair with my headache in my hands for a short while.

9:30 – I climb out of my freshly made bed and go for a shower. This takes a while as I’m a little wobbly, and have been hooked up to a machine for most of the time which involves unplugging, wheeling, positioning so I can reach the shower via the curtain and without spraying all my clean clothes, manoeuvring via the toilet and returning to origin. I then brush my teeth which is rather painful and then perform the series of 3 mouthwashes including one which has to be mixed from 2 boxes of tubes.

10:30 – by this point I’m usually climbing back in bed as the cleaner arrives to clean the floors and surfaces.

11:00 – at varying times but usually by now, the nurse has arrived to give me my morning tablets. See list below. Around this time the doctors also turn up (sometimes 1, sometimes up to 3) to prod my stomach, check my breathing and ask me if I have any questions. To which the usual response is ‘oh, I haven’t checked that yet, but I’ll let you know,’ or ‘possibly, we’ll have to see how you respond,’

12:00 – lunch arrives, which for me is usually dinner at lunch time. So far mostly ‘puréed’ forms of common favourites like strange vegetable stew which tastes like beans, or fish Pie which tastes like a fish smoothie.

13:00 – by now I’ve usually started eating, but it’s cold and I’m less inclined to finish. Pudding is usually at the opposite end of the warm spectrum as I’d normally expect, e.g. Stewed apples with custard- cold, ice cream – room temperature! – I perform my mouthwash routine a second time.

14:00 – they take my tray away and offer me a ‘hot’ drink (usually tepid:) tea is almost tolerable, not sure why but always offered sugar in my sickly hot chocolate which seems overkill and I daren’t tempt the coffee!

15:00 – after an hour or so sleeping usually a visitor arrives asking me if I need anything and how I feel. Although ever grateful, it’s difficult to appear enthusiastic by this point.

17:00 – ‘dinner’ arrives which is a baked potato or sandwich. Or soup which is a gloopy grey undefinable goo with floating almost re-hydrated shapes. Due to my enforced diet I have been restricted to the latter, although in the last few days I have started to risk the excitement of triangle cut sandwiches chewed well. If I have a visitor, they have to watch me eat.

19:30 – by now visitors have left and I have time to update my blog, catch up on the news or watch some telly. I usually have a couple of interruptions for ‘OBS’ or ‘hot drinks’ I also have to brush my teeth and perform my mouthwash routine again.

21:30 – evening tablets are given which includes intravenous antibiotics into my Hickman line (I expect this will finish soon though)

22:30 – final OBS are performed and usually as I just start to read my book, they turn the lights out. (There is a side light but it’s difficult to reach in this room as the remote thingy doesn’t work so a little annoying, but I try and finish at least a chapter!)

sleep

The tablets:

I’m starting to work out what most of them are for, I may have some of the spellings and functions wrong, so if you’re a medical student- go to a library and ignore everything I’ve said.

• Allopurinol – prevents gout due to breakdown of cytoplasm
• Aciclovir – anti viral
• Amitriptyline – relaxant
• Domperidone – to relieve nausea.
• Omeprazole – protects the stomach lining
• Ondansetron – to relieve nausea.
• Co-trimoxazole – prophylactic (preventative) antibiotic
• Sodium Docusate – to relieve constipation

These are in addition to pain relief (paracetamol/codein/tramadol) my migraine tablets (sumatriptan), the mouthwashes (nystatin, chlorhexadine, caphosol), solution for acid reflux (Peptac suspension) and the flushes provided for my Hickman line (sodium chloride, heparin sodium)

As you can imagine, it’s quite a bit to carry and remember on discharge days!