A new Carneddau

After a hectic schedule in Liverpool yesterday, a day at home should come as a welcome retreat, but in reality it is another day of ‘banging-head-against-the-wall’ frustration. There are many tears - one of my worst days for ages - but thankfully I carve a blissful hour of peace and harmony up at Sychnant in the middle of the day. 

It’s as if the ponies know I need them - a small herd that almost come to greet me. There they are, walking upwards through the new-green bracken, manes flowing in the stiff breeze. And to make it even better, there are two foals, one possibly from last year’s breeding, another tiny one that’s probably only a few weeks old and very much still tied to its mother’s equine apron strings. Of course, it’s the antics of the little one that make an irresistible watch, but as always with Carneddau ponies, such is the flowing beauty of the adults that my eyes are drawn repeatedly back to them. As I sit quietly on the grass, happy to watch them grazing, my frustrations briefly melt away. 
I take literally hundreds of shots, so it’s impossible to choose just one today. 

So what’s the problem? As usual, here’s the warning to stop reading if you’ve had enough of all my many health issues! 

Monday’s hospital visits seem to have unnerved me. First it’s phlebotomy at the brand new Royal Liverpool - a sparking edifice that’s risen like a Phoenix behind the grim concrete of the old. I’m quite excited, full of expectations of improvements, but somehow the planners seem to have completely overlooked the fact that a central city hospital will have whole rafts of people needing blood tests, and there’s just a tatty corner of the entrance foyer dedicated to waiting patients. It’s over an hour’s wait - though at least I have a chair - while periodically groups of four or five patients are called forward to follow a wheelchaired volunteer along to the actual phlebotomy ‘suite’. Of course, there’s plenty of Scouse humour amongst those queuing, but the facilities are awful, and to have just two staff dealing with these numbers is ridiculous. 

Then it’s on to Broadgreen hospital for my ENT appointment.  Despite the decision to treat me for TB, my complexity of symptoms means they still want to keep checking for other diagnoses. Whilst attending an Ear, Nose and Throat clinic seems innocuous, I think I’ve got to the point where I just don’t want to be messed about with  any more. And of course, although ENT is relevant in terms of vasculitis, it seems quite literally so far removed from my colorectal/genitourinary issues. First there’s a SNOT form to fill in - yes, really. It’s a ‘sino-nasal outcome test’ - a  scoring sheet to assess how my sino-nasal symptoms affect my life. This all seems just so pointless. Then there’s a hearing test, by which time I’ve really lost the plot and my blood pressure is so high all I can hear when I put the headphones on is my blood pumping through my head. Still, I do my best to follow the instructions of the totally cold and unresponsive audiologist. 

Then finally it’s the actual consultation. The nurse warns me there are several people in the room, but I’m just not expecting my consultant, the doctor carrying out the examination, the nurse and a row of five medical students and trainee doctors. Today, I’d have found it hard to cope with just one doctor. I’m just not expecting the Nasal Endoscopy that follows, and it feels like an assault. It’s uncomfortable, leaving me coughing and choking, finding it difficult to breathe - and all this with 8 pairs if eyes watching me. 

There are no abnormalities in any of the tests; confirmation of what they had expected - I don’t have vasculitis. But I’ve hated every moment of this appointment. 

Having found Monday traumatic, I’ve slept badly and feel so vulnerable today. I have to chase up my catheter supplies as I have only two days left. I phone urology, who tell me it’s nothing to do with them; I need to get a prescription from my GP. I go there and they refuse, saying it’s the hospital who must supply them - or at least arrange supply from a third party. I phone urology again. Surely there’s a hospital protocol/procedure that’s set in motion when a patient has a catheter fitted? No, it’s up to the ward or person who fits it, I’m told. Surely urology have a quality control role in this? No, it’s nothing to do with them.  I must contact SDEC - the ward that discharged me - the ward that previously told me to contact urology…..

It’s like some nightmarish maze with no route through. By now, I’m just so angry, but fortunately this time I speak to ‘Darren’ who’s obviously been on the ‘how to placate angry patients course’ and passed with flying colours. He does give the same message - it’s the doctor who inserts the catheter who’s responsible for starting a catheter pathway for the patient - but recognises that things have gone wrong and is apologetic. If we come to the hospital he will give me a three week supply of bags - and he gives me contact details of the company should I need further supplies. It’s a twenty minute journey there, but we’re more than happy if this means I’ve got the right equipment. 

I’ve no idea why this has been so hard, but I’m exhausted by it all. I’m just not been up to commenting on journals, so it’s been a case of just stars and hearts tonight I’m afraid.