Verdict is out – chest infection means that my planned surgery has been postponed for the second time as I’m sent home on antibiotics to recuperate for two full weeks. Then it will be another trip in to hospital to see if we can go ahead. This is really turning into a waiting game. Frustrating is putting it mildly – I had totally psyched myself up mentally, prepared the house, and even put certain procedures in place, like a will, custody arrangements for my young son should anything happen to my husband and I, birthday cards prepared up to the age of 18 (no, I’m not morbid, very optimistic but a planner – you can never take event organisation out of this girl!).

Indeed, that is pretty much how I’ve approached this surgery, like another big event that I need to organise – and twice over, on the day of the event, it gets cancelled. Anyone in events will immediately understand how this makes me feel – all that adrenaline, that careful planning, spreadsheets a million, all in vain…. Grrr.

I’ve even done two forward-thinking online shopping sprees for nothing! I’ll have to do a third one ‘just in case’ in two weeks’ time. It’s not that my husband can’t take care of it himself – far from it, he is big time hands on. But if, IF, this goes ahead, he’ll have more than his fair share on his plate – full time job, three year old to look after, healthy meals to cook, house to keep tidy (definitely the LEAST important of the list!), a wife to visit in hospital, and hopefully some sleep in the equation too. So any little bit I can do ahead of time to help, I’ll do.

I’m pretty fed up of being at home, too. Let me be clear – I’m not physically up to much else. The chest infection has seen to that, coupled with the usual problems brought on by ulcerative colitis. This morning, for example, was pretty tiring for me. I had my pre-op appointment at hospital (which is when they decided I was inadmissable). I was picked up from in front of my door (cos I can’t walk far – even simply getting up from my bed/chair can bring on an urgent painful bowel movement) by a very kind friend who took time out of his busy day and dropped me off as close as possible to my appointment.

After a one hour meeting (seated) with the pre-op team – during which I mentioned I was allergic to quinolones (last time they were administered, I literally turned into a strawberry – bright red face with spots, much to the amusement of my fellow ward mates) – they asked me to head down to take a chest x-ray, at the very other end of the hospital, a very, very, very, long corridor down. (Note: remember my point re walking just before?) I asked for a porter – yes, I’m 41 years young but I have a serious condition (hello, that’s why you’re operating me!) which means that even a few steps can result in an emergency situation. They tried to accommodate me but the reply was “you’re not a patient so we can’t provide you with a porter”.

The absurdity of this begs belief:

1. I’m not a patient – pardon? You called me in for a pre-op which in fact was meant (had I not had a chest infection) to see me admitted the VERY NEXT DAY for surgery.
2. If our national hospital doesn’t understand invisible disabilities, how on earth can we expect society at large to? If you’re not visually crippled (and I use that word not lightly and with purpose – because I believe that that is how these people ‘think’), that’s it, you’re ok.

Well I have news for you – no, I’m NOT OK. I have a serious, chronic condition which has far reaching implications for the rest of my body; as one of the doctors herself told me, it’s not simply a gastrointestinal disease but a systemic disease because it affects so much more (including, but not limited to, joints, eyes, nerves, etc.). So if I, a 41 year old, asks you for a wheelchair because of the distance (literally, from one end of the hospital to the other) and you’re even aware of the condition she has – don’t bloody say no.

As luck would have it, I made it in one piece without any emergency output (but the strain of that is nothing to take lightly). The doctors who saw me earlier kindly came down to the x-ray area to avoid me walking back and delivered the news that I wasn’t considered an optimal patient for major surgery for the time being, and off they sent me with a prescription for Levoxa, told to stay home for another two weeks to recover before my consultant can take stock again on April 19 (new D-Day?).

Now what’s the first thing you suppose I did when I was picked up from hospital? Headed off to the pharmacy like the diligent patient I am – let’s get a handle on this infection, come on! The pharmacist was surprised at the dosage (see pic) as she said the normal dosage was 1 a day… oh well, I thought, perhaps it’s because of the surgery, things are serious… Back home, I have a bite to eat and pop the first pill… and then, yes then I proceed to do what any bookworm (of the bad case type) does – I read the information leaflet. And much to my amazement find out that the main ingredient is:

QUINOLONES!!!!

Now what part of allergy didn’t they understand?! For Pete’s sake – enough already! Imagine I hadn’t read the leaflet, imagine I was illiterate, imagine I just wasn’t that personally invested in my treatment, imagine a million other different scenarios… Frantic attempt to contact consultant ensues (remember: I’ve already swallowed one) and I’m put on a different antibiotic. You don’t say…

So now I’m hopping mad and someone, tomorrow, is going to get an earful!

…to be continued