Friday, 21 September 2012

As time goes by ..

I've been waiting for that letter to arrive on the door step; the one that tells me that my close relationship with the NHS is not in my imagination, did not happen to someone else and is still potentially current.  It doesn't get me down but I know in the back of my mind I'm waiting for it everytime Bill calls.  Bill is our wonderful postman. The postman who should have an honour because he's been a rock for this community for around 40 years of service, delivering newspapers, checking on pensioners and numerous other kindness too many to catalogue here.

I've had a sudden and unexpected change of schedule today. This means that I can do jobs which have been stacking up. So I chased up the appointment, preferring to know the date than simply waiting like a victim for a letter to arrive. My first choice of contact was the Advanced Nurse Practitioners - two of them who now work a job-share. The answerphone told me one was off sick, the other works only two days, so I bit the bullet and phoned the chest physician's secretary. Was it up to me to trigger a meeting or theirs?

Theirs. Yes, the appointments system should have spewed out an appointment. It hadn't and there was a long backlog. I hadn't "dropped of the system" as I suggested may have been the case. I'd just disappeared into the backlog presumably. I'm not ill so I don't actually need to see the team but  it was their choice of a six month follow up, not mine.

Clearly the appointments system is pants even given that they have an enormous backlog. Backlog - that's worrying if you're a cancer patient. Now I feel guilty even having been given a date because I'll just be wasting their time albeit I might just lift their spirits by my wellbeing and presence.

Middle of November is the date so now I can relax when I see Bill.  It is silly isn't it. Having faced a death sentence and coped with that, I've let just a tiny thing like a pending appointment get to me, not in a big way but as a small niggle.

And while we're talking about niggles I've had to visit the hospital on another matter over the last couple of days on more than one occasion. On two of those I found myself locked in a car park in the early evening with the ticket machine not working and no-one on the end of the misnamed "help" button. I willingly pay the parking fee; I'm actually glad to be able to do so because I'm giving back to the system just a tiny proportion of the tens of thousands of pounds it's invested in me. I'd be prepared to pay double and the fees at our hospital are pretty stiff already.  What I'm not prepared to do is wait around in the encroaching darkness in a state of near panic two nights running, without vociferous complaint the next day to the appropriate department. So they have heard from me in no uncertain terms.

It's these tiny irritants - appointments not generated and car park tickets machines not working -  that wear down patients and if only the NHS could manage those elements better, we'd all be so much happier and therefore probably much healthier. They're not rocket science after all.

Friday, 14 September 2012

Hair news

It's well over a year now since I had my last dose of Cisplatin and Pemetrexed and for the benefit of those who stumble over this blog in search of more information on the effects of the cocktail, here's an update.

My hair did fall out. Not all of it, but a significant proportion leaving me with the same style - very long - but much thinner in density. It was as if those hairs that were scheduled to fall out over the six months or so in any case, did so early. It would appear that while they fell out gradually they have all grown at once. So I now have long hair over most of my head interspersed with a discernable other layer which is now about six inches long.

I was aware of this new crop from the time it started because it presented as a strange sort of whispy halo at the start.  Now it's reached some length it is oddly apparent, especially when I've just washed my hair. I've contemplated having it layered but I think that won't help and it's probably just best to sit it out and wait until the new layer integrates entirely - another year I reckon.

So, if you're reading this because you're facing the same chemo dose, I hope this helps. Oh, and mine didn't change colour. I was going gradually grey and I seem to be going gradually grey at pretty much the same rate as before.  Not every new hair is grey but some are.

Thursday, 6 September 2012

1am and still buzzing

It's just one of those nights. There's a barking deer making a dreadful din outside; that's a muntjac. They are quite small, the size of a large dog and they make a terrible noise at night sometimes with their hoarse bark.  I'm sitting at the computer polishing off a few tasks as my brain appears to be working exceptionally well at the moment. Not sure why - it just happens that way sometimes.  My most creative moments are usually in the early hours. I think it's because it's so incredibly quiet and nothing is likely to interrupt the flow.

I'm aware that the project to sing through Hymns Ancient & Modern (Revised) has floundered somewhat but I'm hoping to continue that when autumn's chilly fingers start to claw at the days and the pull of the garden or other outside pursuits are not so keen. I'm also aware that I really ought to be doing some exercise.

I met a couple of people in the last week who were really inspirational in their keep fit routines. One was running regularly, although they'd never ever run before. The other was walking and aims to have completes a thousand miles in the year. In both cases they just do it to do it. I really have a problem with that. I think I've touched on it here before. It doesn't achieve anything and I do feel that if I'm going to expend significant amounts of energy then there should be some point to it. I'd be happy to do something energetic if it achieved something other than kept me fit. So there you go, dear friends. There's your challenge. What exercise could I do which was not selfish in its ambition and actually achieved something other than my personal gratification?