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.

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.

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?

Update

Everyone always asks how I am. The answer is absolutely fine. I feel great; I have no residual problems or discomforts except for the strange feeling in my feet. That's now so much part of me, if I were to wake with normal feeling in my toes and soles I'd find it extremely odd.

I'm waiting for a summons to visit the chest physician again for my six month check up, but apart from that (which I know will rekindle some unpleasant thoughts), all in the garden is lovely. Actually all in the garden is lovely, metaphorically and literally. I've enormous Bizzie Lizzies and some spectactular nasturtiums coming on. I like eating nasturtium seeds so I'm hoping for a large crop.

Our granddaughter is fabulous - those of you who know me will probably have seen her photo. She is, as all babies are, absolutely gorgeous.  We've seen her quite a bit last weekend as we've had several days of celebration for my husband who has reached 70. He looks about 55. Must be because he's so happy being married to me!

My new company - the one developing a software platform - is going very well. It's all terribly exciting and once we're up and running with a beta I'll be able to tell you all about it. Retirement is fabulous - I've never been so busy!

A very very very sunny day

The sun's out, the birds are singing and I've just seen a leaf-cutting bee carrying a portion of leaf far bigger than himself; so I know that all things are possible.

My heart's singing because in the early hours of this morning our darling little granddaughter arrived safely at a whopping weight of 7lbs 6oz.  Goodness knows how bigger she might have grown if she'd been granted those extra three weeks womb-stay!

I've been told that she he's tried both varieties of sustenance and found them equally delicious and satisfying such that she's sleeping soundly.  All is well.

On tenter hooks*

I hadn't realised quite how emotionally fragile I am until this morning when I woke after an horrendous night's sleep, waking every two hours and battling with the most bizarre of mental tasks.  Such is the nature of dreams. I had niavely anticipated that upon waking I would receive the news that our new grandchild was safely delivered. But no, as yet the process is ongoing. I'm told that early induction is not a quick affair.

Our youngest daughter, having had the dreadful loss of her first child at 37 weeks, is about to deliver her next and is being induced just before the same stage in her pregnancy. I took to our bed last night in that sort of "will-I-be-woken-in-an-hour-or-so" state of mind which meant that I did indeed wake every two hours to look at the clock and ponder the state of things.

I have jobs to do but I'm finding it difficult to concentrate on them. One is to finish the washing of all the cat paraphernalia and to pack it away in the loft. It's not that we an anticipating having another cat at any time, but if the current one is to return after his three week sabbatical, then I feel that fate will decree it is only when all trace of him has been cleaned away and his belongings secreted somewhere fairly inaccessible. Hence rather than betray him, I do hope he feels I've done enough for him now to return. Wouldn't it be lovely if, upon news of the birth of our grandchild, our cat were nochalantly to amble back in.  And if you add to that perhaps a major lottery win - a picture of flying pigs inexplicably fell from the wall this morning - my joy would be complete.

* Tenterhooks are hooks which enable wet cloth to be stretched by its selvedges on a tenter - a frame - to stop it shrinking in the process of woollen cloth production.

Missing

Two days - or is it three? - of unbridled sunshine means that soon we'll be complaining about the temperature being too hot. We're never satisfied are we. Well, actually  I am. I'm extremely satisfied at the moment.  I've run out of urgent things to do; all I have left to do is to compile a list of what I'm going to pack for our week away.

But there is one thing which is bugging me and that that's the fact that our cat has been missing now for two days.  I'm taking some comfort from the fact that a neighbour's cat has been behaving differently since the hot weather - making infrequent visits to his food. The trouble is that our cat has not been in for food. I guess he's either a stiff by the side of a road somewhere or has gone off to look for better lodgings. Yes, I know - sometimes cats come back after weeks away and I do hope ours will.

We moan about him. We moan about the mess he makes. I moaned about the fact he sprayed inside the van (to mark it as his territory) on Sunday. I moan about the fact he won't let me use the keyboard and I've had to put his blanket here so that he can lie down on my desk while I'm working. But after all that moaning, I really am missing him and there's a big hole in my life where our great big bruiser of a cat used to be.