Tuesday, 30 August 2011

Let the train take the strain

Never did like Jimmy Saville.

I have been using the west coast main line service for over 20 years and I suppose it was inevitable that, eventually, I would have "one of those journeys". Well, today is that day. I have always been pretty pleased with the service on this line, especially in recent years, following the track improvements and the newish Pendolino trains. Today just goes to show what happens when things go wrong.

A freight train right in front of my train has caught fire, which means that, obviously the track is closed. It has been for about 2 1/2 hours now and there is no sign of us moving. I have obviously had to cancel my meetings today. (The a/c has just gone off as I am typing this - I wonder if things are looking up?)

Virgin have been providing us with "updates" every half hour, but they don't know what is going on either. We may be reversed back to Rugby, but who knows. The driver, who had been sent to the rear of the train in readiness, has just gone back to the front.

On the positive side, we have all filled in compensation forms, so it looks like we will get our fares refunded. Which is nice...

Better news is that Rebecca got home safe and sound and we had a nice weekend with her and her boyfriend staying. She returns north at the end of the week. It's good to have her home.

The train has just started moving again - in the right direction. I'd rather they had sent us back.

Oh well...

Sunday, 14 August 2011

NICE


Once again, it’s been a long time since I did an update…

Since last time, I have had the sixth round of maintenance meaning that I am half way through the two year course. As usual, I had no problems with the treatment, but there were some new faces at the hospital as some staff have either been promoted or moved to different areas on secondment. I had a good chat with my consultant about things in general and he did an examination to see that things are as they should be.

The Rituximab maintenance adds, in theory, between 24 and 30 months to the remission period following the first round of treatment. Add to that the 2 – 3 years that is the typical remission (without the maintenance) and that adds up to a useful period of time. Anything up to 5 years until the next round. That sounds great until you realise that I have already had one of them… The fact that the maintenance takes two years and adds about two years to the remission is entirely coincidental.

Last week I attended a NICE committee meeting. This is the body that considers whether certain treatments should or should not be provided by the NHS. I was asked to attend by the Lymphoma Association as a “patient expert” and I was happy top do so. About 2 weeks prior to the meeting, I was couriered a copy of the “Highly Confidential” supporting paperwork – all 1,000 pages of it.

The meeting was a real eye-opener. Firstly, there were about thirty people in the committee – all Drs or Professors or something similar. It must have cost a fortune to have these people there all day. Secondly, and I had been previously warned about this, the committee is there to consider whether treatments or drugs are “value for money”. In this case, the patient’s life is the value and the tax-payers provide the money. It’s quite sobering to read a paper where lives are reduced to a monetary value and the criteria for approval include such concepts as “Quality Adjusted Life Years”. So, it’s not just about how much longer a patient might live, but also the quality of their life. Which is fair enough – there’s no point in being kept alive if the quality of life is rubbish. Is there?

There was another patient expert with me at the meeting who took a completely different view on the proceedings from me. She didn’t read the paperwork and, despite having the same form of NHL that I do, and having only one round of chemo, she is both convinced that she is cured forever and will not need any further treatment, but also that the chemo she received cured her of all sorts of other complaints. Good for her – she was very happy and positive about the whole thing. Together, we made our contributions to the debate, which was basically to consider whether Rituximab should be used as an adjunct to all suitable chemo treatments, not just the two or three that it is currently licenced for. The answer seems obvious – to me – but what do I know?

B is on the last leg of her round the world trip. She is now in Boston, so we have been giving her some tips on where to go, including taking the ferry to Provincetown. She would really like it there. The ferry or train to Salem would be a good half-day out too. Then, she’s back to New York for her final week and then home. She’s had a few days in New York already, having decided not to go all the way down south to Nashville, and she’s really looking forward to spending a few more days there. It sounds so good, we have decided to follow her next March if we can. It will be good to have her home; she’s been away a long time.

Now, it’s time to start getting excited about Palermo. Only a couple of months away… These years go so fast now.

The journalist mentioned last month hasn't called, so it sounds like that has died a death. I've decided that maybe he's not impartial enough, if he's actually working for the drug company, so I will decline to be interviewed if or when he does call.

Saturday, 30 July 2011

500px

Have decided that it might be time to move away from Flickr. The next great thing appears to be 500px.com, so I think we will give that a go.

With the inevitable demise of iWeb, I will need to think about moving forward in any case.

Here's a link to the currently empty portfolio. Am going to only upload my favourites...

Sunday, 17 July 2011

50

Well, I made it to 50. I must check out the Saga insurance website now, just to see how much money I can save. There must be some advantage to being this age...

Have had a very good birthday weekend with some great presents and some lovely cards. We had some friends over last night for a meal and am now having a lazy morning watching the last round of the Open on the TV.

My faulty MP camera has come back from Germany again, so I'm hoping that this will be the end of the problem and we can start a long and fruitful relationship. Apparently, it is very unusual for the rangefinder to go out like that without the camera suffering some major trauma, which this one hasn't. Given that the shutter speed dial nearly fell off as I took it back to the dealer, due to a loose screw, the previous technician clearly wasn't doing his job properly.

Having got over the virus that I picked up - it took over a week to fully recover - we have been settling in with Betsy as she gets used to us and vice-versa. She is a great little dog, very well behaved, not yappy or nippy. We were able take her for her first walk on Friday so that will be interesting getting her used to the lead, the roads and traffic etc. So far, so good, I'd say.

I have been asked to attend a meeting of NICE in August and must get round to reading the documents that they want me to return, later today. I am a "patient expert" apparently, which is nice.

I have also been asked whether I would be willing to be interviewed again, this time for a journalist working on behalf of Roche, the drug company which makes the Rituximab. I agreed, on the condition that the piece isn't used in any News International publication. I'm not sure when they want to do that, but probably in the next couple of weeks.

Apart from that, things are pretty much running as planned at the moment. My next maintenance is in about 10 days and that must mean that I am half way through this stage of the treatment. Time goes so quickly.

Sunday, 26 June 2011

Surrogate Motherhood

We collected our new puppy yesterday. We have known she was coming since roughly the time she was conceived and have been in regular contact with the (very) extended family member whose dog this is. Indeed, we have been to see her a couple of times in the 9 weeks since she arrived.

Despite the sleepless nights we have to look forward to and the "accidents" that we all need to learn from, this is a good time for us and the right time to get a new puppy after we lost Pippa just before Christmas. But it struck me as we were driving to Yorkshire yesterday that this is a two-edged sword - our gain is someone else's loss. Sort of.

I had a strange feeling that the wife of the couple who had done so much to love and care for this little white, black and brown bundle on our behalf, since she'd been born and ante-natally too, was like a surrogate mother, handing over her baby. Given that she is not a dog breeder and this is the first litter that her own bitch has had, she hasn't experienced the emotions associated with giving her baby away before. Our puppy is one of six and she is keeping one herself, but three of the other four are actually staying in the same street, with other family members. To see these puppies go is just a case of handing one over the fence to a mother or brother next door. The litter siblings here will continue to enjoy a pack life and wider family life together for years. Ours is going to be a hundred miles away.

As anticipated, it was quite difficult. We called in on a niece and her partner first - Rocky's new mum and dad - and had a cup of tea. Rocky joined them last weekend, so has started to settle down nicely two doors along from his mum and remaining brother and sister. One of his other siblings lives in the house in between - no doubt they all talk to each other across the gardens.

We went to collect her. There was a full puppy-pack for us with a lovely birth certificate, various puppy-pads for those little spills, literature and a quantity of the food that the puppy is used to, so that we know what it is and continue with it, or slowly wean her off onto something of our choice (which we will do, if only because the food is only available at one outlet locally, which is about 25 minutes drive away and not in one of our usual shopping places).

We sat a while and talked and played with the pup.

A bit too long.

I hurried Ann up and we we left to bring her to her new home, but I know that we left a lot of tears behind.

It must be very difficult. The wife had delivered this little dog, helped it and looked after it at a fundamental time in its life. And then let someone she doesn't really know take it away. And all she has left is a very modest fee. It's not something I could do, and I'm sure has dissuaded other family members from any idea that breeding dogs would be a fun thing to do. How women become successful surrogates is completely beyond me. I hope that they get paid a huge amount of money for their services - after all, their commitment makes breeding dogs pale into insignificance - but the emotions experienced in that house in Yorkshire yesterday are on the same scale as those felt in a surrogate's house. Not something I'd ever though of before and we are very grateful that there are ordinary people who are prepared to put themselves through this.

Anyway. Welcome to the family, Betsy :-)

Saturday, 25 June 2011

British Airways BA238 Virus

Yes, the second half of the holiday was great too... :-)

The flight back from Boston was on a Boeing 777, which I reckon is actually a nicer plane to fly on than the 747 we went out on. I think that the seats were just a little wider than before, but that may just be my mind playing tricks. I'm sure BA don't give their economy passengers any more than they absolutely need to. In fact I am sure of it.

Despite the plane being better, the food most certainly was not. In fact, it was almost completely inedible.

On a roughly 7 hour flight, were were given a tray with a "full English breakfast", of which only the inch-long sausage was anything like edible. Some passengers received yoghurt and fruit juice, while other lucky ones received two fruit juices. There was an apple turnover thing, which was just a mushy sticky mess that even McDonalds would have rejected, and a bread roll that I swear was so old, the wrapper had the BOAC logo on it. I kid you not. The plastic knife bent as I tried to cut into it. So I stopped.

That was breakfast. A few hours later they came round with lunch. A lemon and orange muffin. Which I rejected on my previous experience of all baked goods on their flights. It really is shameful. If they can't afford to offer proper, edible food for the prices they feel they need to charge for the cattle class at the back, then just stop offering food at all. Allow people to bring on their own food, bought at the airport. Stop pretending that they are offering a full service and be honest with the passenger.

When I left the flight I was feeling not a little bit cheated and quite a lot hungry. One inch of sausage in 12 hours, isn't great, to be honest.

By the Sunday night, I was feeling a lot less enamoured with "The World's Favourite Airline". (Do they still call themselves that? Was it ever true?)

I woke a couple of times during the night with severe rigors. I wasn't sweating this time, but it was just like when I had the swine flu. I had a high temperature, but returned to the office and took some paracetamol through the day. By the time I returned home on Monday night, I went straight back to bed for another, similar night. This time the sweats returned and my temperature was 39.1C on Tuesday morning. Obviously I called in sick, and made an appointment to see the G.P. that afternoon. Unfortunately, all I could get was the chocolate teapot one who, as soon as he realised I was under the care of a haematologist, decided this was all far too complicated for him and that I should just get to see my main man ASAP. I will bear this in mind next time need my ears syringed.

Managed to get to see my man at Wednesday lunchtime. My temp was still 39C and they took some blood cultures, plus the usual blood samples. The cultures take a couple of days to grow, but the samples get done in the hour. By the time they had come back, and I had been told that I'd been drinking too much beer as my Gamma GT level was higher than "normal" (not true btw!) and my haemoglobin levels were not as they normally are, I was sent away with some anti-biotics and and appointment for the Friday. I was also asked to try to keep off the paracetamol, in case that would mask any benefit of the anti-biotics.

By the time I returned on Friday, my temp had begun to come down and the result of the blood culture was negative. The consultant advised me to continue the course of anti-biotics, and take whatever painkillers I need for the headache which remained.

So, all in all, I am not very impressed with British Airways, I'm afraid. Not only do they care so little about their economy passengers that they are prepared to feed them any old rubbish, edible or not, but they also provide a wonderful parting gift - a week in bed with a massive temperature.

Now, my circumstances are different from virtually everyone else on the plane, in all probability. The Rituximab maintenance does dampen down the immune system and I had received my latest round 10 days before we flew out, so the levels in my system would be at their highest, meaning that the immune system is at the lowest. I knew this before travelling. But, while over the 9 months that I have been receiving this I had experienced more colds than I would normally have expected to have in a season (entirely normal for Rituximab maintenance beneficiaries), I hadn't expected to be hit so hard by one of the viruses that get you when you fly. After almost any flight, I would expect to get a sore throat a few days later, but this was in a different league altogether.

So a lesson learned. BA Economy long-haul really is terrible and being on Rituximab maintenance isn't necessarily the easy-ride that I thought it was. Two lessons.

Now, to find some half decent shots from a very poor, thin stock...

Friday, 10 June 2011

The weather breaks

Day 8 Thursday 9 June

Were going to have a "day at the tent" today, but we ended up having a drive to Orleans, the next town along the Cape and one we'd always by-passed before. Nice town and yet another fantastic beach. All the beaches on the Atlantic side are wonderful - they are actually the same one. On the way, we dropped down to First Encounter beach, the where the Plymouth settlers first came across the natives. Due to the proximity of the marsh on the bay side, there were lots of midges which were suspiciously similar to our old friends from west Highland in Scotland. We didn't stay long...

Drove into Chatham on a quieter road and passed the location of the cottage we would have rented had the owner been bothered. Not as good a location as the one we ended up with, so that's good.

We did manage to find a great house to buy over here though. Just the small matter of finding the $2.4m now...

Had a walk around a wildlife reserve out into the Sound from Chatham and watched sone seals a few hundred yards off shore. Heard on the news later that some nutter is shooting seals from the shore - not those ones, but elsewhere on the Cape. I hope they catch him soon.

Returned to Brewster as the weather started to look ominous.

Thunderstorm came at around 7pm and lasted about an hour, including knocking the power out for about 10 minutes, but the air was much fresher afterwards, as usual. Rained a lot during the night.

Thursday, 9 June 2011

America and the killing of the butterfly.

I have been reminded this week about a Ray Bradbury short story "A Sound of Thunder" in which a hunter goes back in time to kill a T-Rex and inadvertently changes both the course of history and the way that some words are spelled. By the seemingly innocent act of accidentally killing a butterfly 60 millions years ago, the present day is subtly different, and yet the same. After a few days on Cape Cod, this is how I am beginning to see America, more particularly a small part of New England, when compared the "Old England" which is home. New England is like England might be in a parallel, but close, universe.

We have been to the United States only once before, about 9 years ago, when we visited Florida for what was to be our last two week holiday as a family. Florida never struck me as being a "genuine" place and I was convinced that we were never offered, let alone saw, any of the real America, not even on the Gulf Coast. Whilst Cape Cod is hardly bereft of tourists and every thing that goes with them (us), I do get a sense of some real life going on here too and it's in this real life interaction with people that it quickly becomes obvious that there is more to our differences than Churchill's "common language", or more than 200 years of post-colonial separation. Now, my lack of experience over here is bound to lead to some things being more obvious than they might be to those more familiar with the country, and many of the observations might appear naive on my part. For that, I apologise in advance.

However, it's the little things that really do make a difference and that you do notice. The big things, like driving on the right are obvious, but familiar to most Britons abroad, of course. Subtly, though, Americans are worlds apart from the British.

The language is an obvious one and I'm not talking about the obvious and, if I'm honest, often more logical spellings adopted over here. We passed a private drive this morning where a sign said "Private. No Exit". No exit? What about entry? Do they allow anyone to drive onto the property, but not leave? Or how about a sign as you approach a built up area which says "Thickly settled"? Quite charming, but a little archaic, I'd have said.

Road use and signage is a huge differentiator. I have no idea why 6.7 litre, V8 off road vehicles are so popular here. Everyone seems to drive at 40 mph, or less. Even on the highways, where the speed limit might be 60 mph, no one drives any faster than that. This might be fear of getting a speeding ticket, I suppose, but there are relatively few police cars watching and waiting. No cameras, of course. An American driving in the UK must be scared witless by the speed at which we drive on dual carriage-ways and motorways. And everyone is extremely courteous. People let you out onto main roads, even when they don't have to. They have odd "all flashing red" cross-roads, where people actually just take it in turns to cross the junction. This kind of thing is unimaginable at home.

The road signs themselves need a serious overhaul. Basically, if you don't know where you're going, tough luck, the signage won't help you. You might get a green sign actually on a junction, telling you to turn left or right, but there will be no pre-warning, and seemingly no centralised plan as to how to describe a route or hierarchy of destinations. Maybe this is one of the reasons why they drive so slowly. I wonder what the accident levels are like, when compared on a per driver mile basics?

Then we have the money. What a great idea to have every note to at least $20 the same size. And the same colour, with only very subtle hints of a difference. I'm not colour-blind, but someone who was would find it pretty much impossible to tell the difference, without reading every note for its denomination. It means that every note has to be individually checked before being handed over to the assistant. I suppose that's not a bad thing, per se, but it does make it much more difficult to know at a glance how much cash you have in your pocket at any one time.

We have found it impossible to eat a light lunch since we have been here. There is no such thing as "just a sandwich". A sandwich has to consist of about half a pound of meat on a massive bun and come with a portion of fried potato of some description, a pickle, coleslaw and some salad. And it has to cost you about $12. The simple two slices of bread with a couple of slices of ham inside for three quid is completely unknown. Yesterday, we asked for a coke to go with our meal and the waitress brought at least a pint, and then came along and plonked a second one (each) on the table, without being asked. I don't actually want to drink two pints of diet coke at any time of the day, thanks. I have no problem with the concept of "free refills", but I would prefer to be asked, rather than it be assumed. One can have too much of a good thing and that second pint was just wasted.

The Americans we have met have in general, been very courteous people and not just on the roads. The "Have a nice day" thing and "You're welcome!" every time you say "Thank you" seems to be genuinely meant, most of the time. This is very much not like at home, where many people in the service industry think that they are doing you a favour just by being there to take your money. And it's the British who were supposed to be polite...

They are a friendly bunch too, happy to strike up a conversation in a shop, restaurant or on the ferry. Much more so than at home, where the British reserve is very much to the fore. I quite like that. I am convinced that it's the accent that makes people ask about you, though, not that they have any real, genuine interest. But I may be wrong about that. Twice, now, we have been asked whether we went to "The Wedding" recently. That strikes me as being a bit odd, and somewhat naive on their part, as if everyone in the UK went to the wedding. Maybe they were just referring to going to London to stand on the street and wave a flag, but I'm not sure they were.

From what I have seen on the cable television in this cottage, it amazes me that the US produces any quality programmes at all. The system that brought us The Sopranos and The Wire, seems, for the most part, to rely on religious programmes shot on a $400 video camera, local news, which rolls every 10 minutes into another 10 minute weather forecast, and game shows which might have been innovative in the 1960s, but are looking somewhat past their best now. And there are hundreds of channels to choose from. The most amazing thing is that one can choose to watch The Sopranos at 7:30 in the morning. Clearly no watershed, which surprises me for a nation which appears to retain a moral background, but also some people must watch it, otherwise the tv station wouldn't broadcast it at that hour.

Then there is the flag. You are never more than 100 yards away from another stars and stripes. If you look around you and can't see at least four flags, then you are either on a yacht or somewhere in the forest. I knew from the Florida experience that this was the case, but that was in 2002, when 9/11 was still much more raw than it is today. And I understand fully that a nation fighting two wars a long way away needs to keep it's home fires burning. But, I have been surprised at the prevalence of the flag. It was Memorial Day here a couple of weeks ago, but I don't think that made much of a difference. At home, even for royal weddings, we just don't do this sort of thing. Guilt, probably.

That really sums up quite a lot of the differences between our two countries. Or, my country and the American Nation. I have noticed that there is a difference there too, but that's one that I still haven't quite worked out yet. In Kennedy's time, it was still a "country", but now, it's a "nation". I wonder when it changed?

We have been in this small part of New England for nearly a week now and whilst I could imagine myself living here (as one often can while on holiday), I could never call it "home". I haven't said anything new or original here, and I will hold up my hand to any charges of cynicism on my part, but these kinds of differences between us are immediately noticeable, especially to those of us who rarely come here. There are, no doubt, dozens of other examples of such things. We have much in common, but much that divides us and makes us two very distinct peoples.

One of the Plymouth Brethren must have killed a butterfly.

Martha's Vineyard

Day 7 Wednesday 8 June

With the weather forecast looking worse for the end of e week, we decided to take the trip to Martha's Vineyard today and drove down to Hyannis for the fast ferry. This takes about 55 minutes and is a good service. It's expensive, though, at about $140 return for the two of us. Still, you don't fly so far and then not go to somewhere that you've wanted to go to since you first heard of it.

Maybe I was expecting too much. Maybe it was the heat (mid-90s) but I was a little disappointed.

We arrived at Oak Bluffs at about 10:25 and started to walk to Vineyard Haven, about 3 miles away. Soon reminded ourselves that US roads aren't made for walking, so turned to the town and found the bus stop to take us there for $2 each way. Quickly found The Black Dog Tavern (and shops...) as recommended by Nigel at home and had an early lunch at a table overlooking the harbour. Once again, a sandwich is not a sandwich... A bought a hat to keep the sun off her neck and A bought a t-shirt.

Vineyard Haven is quite a charming little town, especially along Main Street, but as with most of the places here on the Cape, it's very geared towards tourists and feels false. Waited for the bus to bring us back to Oak Bluffs in the full heat, with little shelter offered, and then spent a nice hour in the shade near the camping ground tabernacle. An interesting place, with an interesting history. Paid a visit to the little museum and met a couple of chaps relaxing on a porch, who enquired after A's hat and whether we had attended the wedding. That's the second time someone has asked us that. It's clear that Americans were much more interested than most British people I know.

Returned on the 16:15 ferry to an asparagus supper.

Will write about my impressions of this "slightly more real than Florida" America later.

Heat-wave coming...

Day 6 Tuesday 7 June

Supposedly an easy day, mid-week. Dropped down to Chatham in the morning. A proper gentile town, with nice lawns and fancy shops all along Main Street. Had a very good cup of coffee to gird the loins, then shopping for some lightweight trousers for A. She couldn't find anything she liked ( no surprises there... ), but there was plenty on offer. The place has the feel of a town just waking up for the season. Good job we weren't able to rent a place there - it's an expensive town to eat in by the looks of it.

Drove round past the lighthouse and ended up an old dock, a bit like we have on the Dee estuary. A former fishing place, we had a nice chat with a fellow with a very impressive beard and a bike, who has been coming here for the last 20 years. Leaves for July, though - too busy for him. He advised about a beach a bit further along the coast. Beautiful, again, and the water was just the right temperature for a paddle. Could see that it would be massively popular during the season, though. There was a lovely house, right on the water's edge that I wouldn't mind making a cheeky offer on...

Carried on down the coastal road, stopping for lunch on the way to Woods Hole. Yet another RTA to hold us up on the way, during the hottest part of the day too. 86F this afternoon.

Woods Hole is a university town, specialising in oceanographic stuff. Also has a ferry to Martha's Vineyard, but we have decided to go via Hyannis tomorrow.

Back home on Route 6, much quicker, then a "fish supper" at the same place as we had the lobster rolls earlier in the week. Much better value, but a bit "diner-ish" for my liking.