Freddie Starr ate my hamster!

I was initially against any press regulation on the grounds that I really wouldn't want to be in a country where whistle-blowers could be silenced, where politicians could not be held to account and where a less benign regime could abuse the original intention of any legislation.

However, upon giving it a lot more thought, I now realise that the genie is so much out of the bottle with Wikileaks, Facebook, Twitter, etc. that the press can no longer claim their right to first disclosure of public interest matters as a defence against compulsory regulation.  That argument no longer holds water. 

Ah, but I hear you say, how will be know whether or not to believe what we read on social media?  Well, in response I ask you a question.  How do you know whether the established media tells the truth?  It's a wild world out there in swamps of gossip and the only solution is "reader beware".

That's it

That's it, I said, rushing to find a piece of paper to write the exact words down.  Dame Stephanie Shirley has just been on Radio 4. She was explaining that still, all these years after arriving here as a refugee, she feels she has to "make my life worth living to make my life worth saving"; to "justify my survival".  And that's exactly how I now feel.   Dear Dame Steve summed it up exactly.

The other piece of information I picked up was from a contributor whose name I didn't record but he said "there is no such thing as an unwounded soldier".  How true.  I remember my father who survived the second World War against all the odds after being parachuted into France, bombed by the Americans and taken prisoner. He volunteered to become a paramedic, to parachute, and to carry out bomb disposal.  And yes, he was damaged psychologically in so many ways that even I as a child and young woman could see. I guess the stress also damaged him physically - he was dead at 61. It certainly put paid to the pacifist that originally joined up. 

Every Remembrance Day I stand at the war memorial thinking how fruitless and stupid war is.  I do it for him really because he no longer can. I don't do it to glory in the men who didn't come back or to satisify some nationalistic trait. Standing round a war memorial for a few minutes each year and donning our poppies forces us to face the reality of legalised murder by others on our behalf. It's still going on and we have to accept some of the blame. 

And in that context, how relieved I was to hear that Obama is back in the White House.  The endless analysis of USA politics by British media has been very boring, but today I was glad to hear the news. I feel that the world is a much safer place today.

Getting old

I guess it's pretty much the same for anyone who has had cancer and recovered.  Every little twinge, every little muscle spasm, every little sensitivity anywhere is potentially an indication that things are going wrong again.

I'm no different from anyone else in this respect. We're getting near that appointment that I had to set up - you know the one that should have come six months after the last consultation but hadn't because of the appalling appointment system. It will now not occur until nine months after. I suppose because I know that professionals will be assessing me, I'm also doing it myself more than I otherwise might.

In terms of my physical shortcomings there's my knee. Actually I don't worry about that as it's been on and off problematic for so many years. Then there's my hip or is it my back; a slight muscular twinge every now and then. Some thickening on the hip was identified during one of my CT scans. They asked me if I had hip trouble and after the PET scan told me it was nothing to worry about. I suppose I should have realised that if it wasn't visibly normal then at some point it would begin to play up. 

There's been the odd flutter of a muscle deep inside my calf. It started when I strained the calf muscle while walking. It continued for about a week. You know, a bit like when you get an involuntary muscle flutter of your eyelid. Not painful but very annoying. It's completely gone now. Occasionally I feel a slight pull of a muscle in my back similar to the odd back sensations I had when I found out I was ill with lung cancer.

A couple of weeks ago I had an odd twinge around the front of my chest; rather as if a rib as playing up. Of course, anything on the right as this was, in the vicinity of the missing lung lobes, puts the wind up me. A few hours later as I went about housework I felt a click and suddenly all was well again.  Goodness knows what that was about.

But the nastiest of these completely inconsquential aches and straings was when the other week I over-ate terribly. Fish and chips were being served down at the pub before the harvest auction. Despite the fact that my portion was too big, I finished it.  About thirty minutes later I realised that for every five or six beats my heart was missing one.  Not nice. It lasted an hour or so then went back to normal. I realised later that the feeling I had was not totally unfamiliar. I think I've had it in the past when I've overdone it food-wise. The difference this time was that I realised my heart was playing up. Anyway a quick Google and hey presto, as I rather suspected, palpitations can be a symptom of over-eating.

So there you have it - all my aches and pains. None of them add up to anything I'm sure and I wouldn't be suprised that for a woman of nearly 63 with a near-sedentary life-style, I'm a damn sight fitter than most. But before I go there's one more physical thing that I must tell you and that's about the feet.  The damage to the nerves in the toes of both feet and extending under the sole of my right foot. Well, and I hardly dare type this for fear that I'm imagining it, but I think there is some improvement.  I can't be absolutely sure and I'd be amazed if it were so because it's so long after the event (eighteen months since my last chemo) - but  my peripheral neuropathy does seem to be reversing. Fingers (or should that be toes?) crossed!

The thing I've been dreading

It's happened - the thing I've been dreading, the cold on the chest.  I'm not sure why I've been dreading it but I suppose knowing I have a significant amount of titanium staples in my chest and that the way I cough is significantly different, it's unsurprising. You don't need to write notes of sympathy it's not that bad. I'm only writing about it for the benefit of anyone else who stumbles on this blog who has had lung tissue removed and is worried about chest colds.

I reckon it's a Berkshire virus, and a cold acquired through close contact with someone weekend before last who came from that county and had a hacking variety. It started around the back of the throat and was quite quick to pass through the sniffly dibbly stage and yesterday hit the chest.  Both ears are also substandard due to congestion.  However I'm not unwell as such. I had a good cough this morning (look away anyone of a delicate disposition) and albeit the mucus acquired was a tad yellowy, it gave me absolutely no cause for concern. 

The method of coughing I find necessary in order to clear my chest is quite different from before where you close your throat and puff air through the closure. The new coughing is done with an open throat and you just constrict the lungs and push unwelcome material up. Sometimes I have to do it more than once to achieve the object, but it works. It was a technique suggested by the physio after the op.

The good news is that this occurrence has been nothing like I worried it might be.  In fact, if it wasn't for needing to use the alternative coughing technique, it wouldn't be any different from any other cold I've had in my three-score years of existence.  The only thing that has bugged me is the reason for the cold in the first place. Maybe I let my guard slip just a tad too far that weekend, with wine and sugar and just maybe this is the result.

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?