+44 (0) 1323 890 604

The sun tries to break through the autumn mist. Lunch out, “we’re on us ‘olidays”.  Well, yes if just not having to go in to work every day counts as holiday. I ought to feel blessed. Really, I should. I am walking some of England’s most spectacular coastline almost daily to try to build up strength and stamina. There is some niggle from where the kidney was removed, but not major. The operation on my shoulder failed and that pain is intrusive and needs sorting, but that will eventually be addressed.  The accidental removal of an artery seems to have had no major impact. But the cancer is ‘cured’, isn’t it? Well if it is why all these continuous intrusive checks?

Birling Gap. Erosion takes a house every couple of years. The cliff moved back about 4 metres in 2013 alone. Sometimes I feel like that house waiting for the next wave

Yesterday I told the consultant how much terror waiting for the result of a scan or other test for three weeks can cause, not just for me but for my partner too. I know it is to ensure the cancer doesn’t come back, but the stress it causes being tested so frequently must be a contributor to other problems I would imagine? It isn’t just seeing the consultant every 6 months, yesterday booking the appointments for February and August 2018, it is the tests in between, Urine tests. Blood tests. Tests where they insert a camera through my penis to inspect the inside of the bladder. All but the last involve waiting for the results, sometimes for weeks. No email to say, ‘all clear, nothing to worry about’, no its almost as if I’m on some kind of ‘make work’ programme for expensive consultants.

My tide is out. It must turn, surely

Surely if nothing is there they can just send me an email saying OK, nothing to worry about and the consultant can spend his time seeing to people who are really ill? I know bladder cancer is a pernicious little bugger with reputedly a high recurrence, and I was lucky mine was caught early, but equally if scans, blood tests and urine tests show nothing wouldn’t the resources of the NHS be better spent calling people in only when they reveal something untoward? Or do the consultants need the appointment to force them to look at the results of the tests?

I can’t see far through the fog

The NHS surely needs to manage things better. It is outrageous that a 14p packet of paracetamol I can buy in any pharmacy is put on a prescription. It costs the NHS more than 14p just to put the prescription down on the prescription pad. If you factor that in with the worry and stress of endless appointments for ‘cured’ patients with the resulting illnesses that stress causes there must be a better way surely?

Like the steps at Birling Gap, I need reconstruction to be safe from the tides and storms. In part I have had that, but I need to climb up again

I left yesterday’s consultation feeling depressed. Exhilarated initially to be told nothing on the scans, but then depressed by the litany of tests and more scans I face over the next 6 to 8 months. Of course, I value the treatments I have had – they gave me life back, but I want to look ahead with optimism, and it is difficult when I am constantly pulled up by the need for another test, when the ability to look ahead is threatened by yet more checks. This is not a ‘cure’, seems more like a temporary armistice. I value the NHS, but the waste in the system is so visible it appals me, and the worry of constant scrutiny sucks joy from everyday things.

So guys, if the tests show nothing, a quick email, not a three or four week wait for an appointment. I’d be happy with that and you would save the consultants time to be used elsewhere.

Or is there something you are not telling me?