Unfortunately, the consultation was as I feared …

… but worse.

The fellow I saw wasn’t even a locum, he was a retired haematologist from out of the area who they seem to have found just as a stop-gap. He didn’t know my previous consultant and he clearly hadn’t read my notes before I saw him.

I was a bit taken aback when he said “Well, I don’t know what to say to you”. Now, I am a reasonably well-informed, reasonably intelligent, professional man who has been living with this to my knowledge for these past four years. I know what’s wrong with me and I know what the “Watch and Wait” is all about and I know what the prognosis is likely to be. It’s only the time-scale that is the unknown factor at this stage.

If I had been a worried pensioner, and my consultant had said that, I would probably still be on the cardiology ward…

I told him what was wrong with me. I told him a brief history and he did a very brief examination. I told him about the lymphoedema in my leg, but he wasn’t interested in that. He asked me when I wanted to be seen again – I almost told him “tomorrow, but with someone who cares”. But of course, I didn’t.

Not impressed at all by this, I have to say. Maybe I should have taken my chances at The Christies after all, but while I am “well”, it’s not so important. Goodness only knows what would be happening if I’d told him that my symptoms had returned – what sort of care would I get then?

I need to do some research and then see if I can get referred to another consultant.

52 not out

Another birthday has been and gone. Another year chalked off and another year to look forward to. I had some very good presents – posh toiletries, lots of books, the usual things that 50-somethings get  – and a night away in Boot, in Eskdale in the Lake District. Thank you to everyone!

We stayed at The Boot Inn, in the village of Boot. We have stayed there before, as a break on a journey to Scotland about 5 years ago, and it’s unusual to be able to get just one night in the Lakes at a weekend. However, they will let rooms on that basis and very welcome it was too. It’s a decent place to stay, but was extremely hot, being at the end of a heatwave, with temperatures up to 30C. The food was good (best black pudding I have ever eaten) and the beer was local. Very good value for money too, so highly recommended.

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We took the opportunity to visit some towns on the coast that we haven’t properly been to before. Ravenglass is very attractive. Whitehaven and Workington maybe less so, but interesting nonetheless. Cockermouth is a lovely little town now that it has dried out from the floods of a few years ago – the sort of place that you wouldn’t mind living. Home after a picnic under a tree at Watendlath.

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And now, I realise that another three months have gone by and it’s time to pay a visit to the hospital. Friday morning. As I have said before I am a bit disappointed that I have to start a relationship with a new consultant, and I am obviously hoping that I do not have to see the locum, who could easily change again by the next time I see them. However, I should count myself lucky. It appears that if I were at the Christies in Manchester, I would be seeing a different consultant or specialist every time, so as not to only be seen by one person.

I suppose this does have the advantage of getting a “second opinion” each time you pay them a visit, but I do think that I have benefited from being in the care of just one person for these last four years. Let’s see what Friday brings – I always have choices I can take after this consultation.

I have been getting tired recently and occasionally I can feel the nodes in my neck, particularly after a couple of drinks. When I was first diagnosed, a bottle of Peroni beer would make itself known in my neck within half an hour (wine wouldn’t, for some reason). I’m just hoping that this doesn’t mean that the second half of 2013 is going to go the same way as the second half of 2009… you can read for yourselves where that led to and I am hoping to have a few more years yet before opening up that particular door again.

Whatever – there’s nothing that I can do about it and I must cherish what I have, rather than what I can’t have. Be satisfied with my lot and enjoy the moment.

And I am. I try to make the best of every day and every opportunity that comes along, but it’s very difficult sometimes. But I had a bad weekend a couple of weekends ago, where I was over-thinking things and feeling very sorry for myself. Sometimes you need weekends like that just so that those kind of feelings don’t come to the surface too often – get them all out and over and done with. Until the next time.

I wonder what happened to the research that the psychiatrist was doing a few months ago. I never did hear anything else.

Maurice Saatchi, cancer and innovation

As someone who might not even be here if it weren’t for people prepared to take risks, innovate, test, retest, lose battles, win battles and all the other cliché-ridden phrases used in the “fight” against cancer, I read with some dismay this piece in the Telegraph by Maurice Saatchi.

Without innovation we will never cure cancer

He is absolutely right. Innovation and free thought, unconstrained by the threat of litigation if something goes wrong, will find us closer to this futile goal. I don’t believe that we will ever cure “cancer”. Which cancer? There are hundreds of them, thousands, probably, and with an ageing population more and more of us are going to get it.

BUT, we will never even begin to get closer than we are without us all being prepared to take risks, either for ourselves, our patients or our fellow man.

If and when the time comes and I am asked to join a clinical trial for a new treatment, after some careful consideration, I am most likely to say “Yes”. I owe it to myself, my fellows who also live with this disease and those who are to come. But also to those who have gone before. The mustard gas victims  Those who were prepared to try new drugs and treatments before me – they are the ones to whom I owe the biggest debt.

As my blog title says, it’s “My turn this year”. One year it will be my turn to step forward and make my own contribution to this process.

Provided they are still allowed by law to innovate of course…

Catch-up with Islay photos

Now that the films have been developed, I can post some further shots from Islay. More may appear over the coming weeks as the weather is far too nice really to be sitting inside here, scanning and Photoshopping, but that said, here are a few to be going on with.

This is the meadow as shared while I was away, but this time taken with the Nikon. Not that there’s anything wrong with an iPhone camera these days…

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Now a few film ones.

Firstly, Port Charlotte lighthouse (Leica and film)

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And a few black and white film shots from the south coast road. There are only about 3 miles between these three and many people walk between them, getting the bus back to Port Ellen. Not a bad way to spend the day, really.

Laphroaig

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Lagavulin

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And Ardbeg at the end

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