Thursday 22 December 2011

Nearly the end of another year...

Well, the half stone hasn't disappeared. Talk about wishful thinking! Probably not a very reasonable goal to lose weight in the run up to Christmas, to be honest...

Sitting here this evening having finished work for the year is always a good feeling. This year has been a challenge, as they all are, but we have achieved what we set out to do. Three projects have received their planning approval, one of which has been tendered and it looks like we have a contract sum we can live with. Four more tenders going out in January or February, for starts on site in the first half of next year. Going to be a busy year again, but the culmination of 6 years work. It will be great to get the boots dirty again - it's been a long time.

The maintenance went as usual this time. Three quarters of the way though now. I have been going there regularly for two years in February and it will be odd not to need to do so come the summer - visits there have been an important part of my life. I don't want to have to keep going and I know I will return in the not too distant future, but I will miss that part of the routine next autumn.

Looking forward to having everyone home for Christmas and to the trip to Scotland next week. I think we'd go there for a day or two this time of year even if we didn't have to take Rebecca back. It's a nice break between Christmas and New Year. Also thinking about taking a cottage in Scotland again this summer, although I did come none to find Cornish cottages on the iPad this afternoon... I quite fancy Harris or Lewis, but it is a very long way to get there. Would need to make it a two day journey, at least on the way up. Ullapool is a possibility too. Will need to decide in January as these places get let very quickly. So long as there's some scenery to shoot, I don't really mind.

AirMiles and Avios

I don't know how many people in the UK collected AirMiles, but I am pretty sure that many will no longer be collecting Avios. I am one of them.

In June 2011 (I nearly wrote "last year" then), we enjoyed a trip to New England, with the flights paid, for the most part, via AirMiles. For two tickets, the cash I had to stump up was £350, on top of 5,000 Airmiles. The AirMiles had been collected over a number of years, through mercilessly taking as many off Tesco as possible, and Shell fuel, Lloyds TSB credit card etc.

I had enough left over to allow us to get to New York for £400 in March 2012. That's not a bad deal, considering that I would have bought the fuel and bread any way. I did this deal, before they changed.

Since their change to Avios, the number of Avios one needs to do the same flight has been reduced slightly, but one now has to pay duty and taxes ON TOP of the cash element. The total cash component of this deal, is now around £950, plus all the Avios points.

I have just priced two seats on the same aeroplanes that we will be using in March on the BA site. The flights would cost me £750 for the two, if I were to buy them today. that's £200 LESS than using a shed load of loyalty points and cash.

I really don't get this at all. The loyalty points with hundreds of retailers are now worse than worthless.

Avios state that they have much better deals for short haul flights. Which they might do, if you live near London. For those of us who are fortunate enough not to live in the South East, their only option is to fly you to London first, THEN on to where you want to go.

The whole thing is just ridiculous, and the Avios company just don't care that they have ripped off hundreds or thousands of customers.

The good thing, though, is that I don't need to shop in Tesco ever again - every cloud has its silver lining...

You don't know whether to laugh or cry.

Interestingly, my wife got £90 off of the "big shop" at Sainsbury's yesterday, with the points acrued on their own loyalty card since we stopped shopping at Tesco.

Saturday 26 November 2011

BP and Magnum

The end of another week and half way through the weekend. Four weeks til Christmas and lots to do.

Saw the cardiologist again on Monday evening and he gave me both an electrocardiograph and an echocardiograph. Obviously, he too could see the odd "Q" spike in my trace.

His examination of my eyes on the Friday had demonstrated that I have had high blood pressure for some time (years...) as shown by a couple of veins on the retina which cross. If you have high blood pressure, one of them squashes the other and constricts it. The echo proved that this is indeed the case. Watching the heart beat, seeing the blood flow in and out and the valves flapping around is an amazing thing to see.

The part of the heart that divides the two main chambers is the septum and if you have had high BP for a long time this tends to thicken. Mine has thickened and this means that the heart isn't working quite as it should. The answer, of course, is to reduce the BP and this damage can be reversed. So that sounds like a plan. I asked what would happen if I didn't reduce my blood pressure and he said that I eventually would suffer a massive heart attack - but that the stroke would probably get me first. This is a consultant I can do business with.

In order to assess how bad my BP is, he gave me the 24 hour monitor, which is an interesting experience, especially at night, or in meetings. I'm sure this one was faulty, as on one cycle, my hand went red and my fingernails blue - I was "that" close to taking it off, before the pressure dropped.

On Friday, I went to get the results, which were as bad as I thought they would be. This means that the plan is to get down to less than 80 kg and cut out the alcohol, as he had advised last week. In the meantime, he's given me a prescription for BP reducing tablets, to prevent any more damage to my heart and he wants to see me again in 6 months or so.

Today, I have been to London to attend a symposium organised by the photography agency "Magnum".  Organised to celebrate the release of their book of contact sheets and discuss their demise, it was very interesting. There were some very good speakers, and it was a worthwhile trip, but the venue was terrible. It was a college building in Elephant and Castle. The projector they were using was terrible, the lights in the lecture theatre couldn't be adjusted properly and the amplification wasn't great, especially when the speakers didn't know how to use a microphone.

Notwithstanding these problems, I'm glad I made the effort and will get the contact sheet book out again tomorrow. Looking forward to getting home.

Finally, this month's maintenance has been put back a week due to the strike that's on the 30th November.. Not very pleased, I have to say...

Saturday 19 November 2011

Life is full of challenges - this is just the next one

Being diagnosed with a "lifestyle" condition is different from being diagnosed with Non-Hodgkin Lymphoma. It's as if you have failed yourself; let yourself down over the years by not looking after yourself. Let your family down too. When diagnosed its very hard to be non self-judgemental. (Is that a word?) It must also be very difficult for a consultant to be non-judgemental too.

The new consultant is a very nice guy indeed. Very thorough in his examination and very "kind" in his responses. He spent about 45 minutes with me yesterday and went through my entire medical history with me, including the lymphoma. He explained carefully what the initial ECG tests had shown (an anomaly in the peaks and troughs of the trace) and whether this really does mean that I have had a heart attack that I don't know about - I might have done. He also explained what he plans to do with me.

On Monday, he will give me another ECG check and an echo-cardiogram to see what the heart is doing. He's also going to put me on a 24 hour blood pressure monitor so that we can see what's happening there. I have known it to be high for ages, but it's not easy to get it down. Still, when we know what the real problem is, (if being a bit overweight isn't it), we will know the task ahead. I see him again on Friday evening. But, there are things that can be done that would be helpful, regardless of the diagnosis and tests next week. Basically, watch what you eat, what you drink and walk about more.

So, that's what we're doing, from today. We don't have an unhealthy diet, to be honest, but re-examining it won't harm and a little less red wine won't either. The dog will get more walks than she might care for, but that's just too bad. So, let's see how much weight can be lost before Christmas.

I reckon I can lose half a stone - we will see...

Thursday 17 November 2011

It never rains

Off to see the consultant tomorrow. A new consultant. This one is a cardiologist.

Through the office, all the professional staff have biennial Bupa medicals. I have had a few now and two years ago, the ECG trace showed some sort of slight anomaly. Well, this year, it's still there and the doctor recommended that I have it checked out. Hence the trip to see the cardiologist. So, more tests will ensue, no doubt, plus a severe lack of carbohydrates, fat and wine over the coming months...

Apart from that, things are ticking along much as expected. I have had the pins and needles a couple of times since the first time so that's something to raise when I see Consultant 1 in about 10 days and it took ages to get over the cold I picked up on the plane. Having the flu jab a week later probably didn't help, though.

I am slowly getting things in the diary for the trip to New York in the spring. Already booked are a trip up the Empire State Building on the Sunday morning and I have made contact with Ann's long lost American cousin. She has offered to drive into the city, pick us up and take us to the fire station where Great Uncle Pat worked in the 20s, which is very kind. We have also arranged o have some supper with a couple of friends while we are there. There has been some discussion about where to eat, but I am sure we will get something suitable sorted before we get there.

Have also arranged to see the Leonardo da Vinci exhibition at the National Gallery in January - judging by how quickly the tickets have sold, it's one of those "once in a lifetime" events. A weekend in London in January is getting to be a habit, but it's good fun going to the city not on business. With the usual Edinburgh overnighter between Christmas and New Year coming up, it's going to be a good few months.

Make hay while the sun shines, and all that...

Have ordered a couple of larger prints from the German printers again. Hopefully they will be on their way shortly. One is a large canvas to hang on the opposite wall in the bedroom to the "Olives" canvas and there is also a framed black and white of the loch before The Old Man of Storr. It's the same size at the Hadrian's Wall one from last year, so maybe they can hang as a pair in the dining room.

I really do need to get out with the camera more... as usual.

Saturday 22 October 2011

Sicily, panna cotta and a confession.

Keeping a blog is a bit like a confessional. Not that I've ever been in a confessional, but I do feel like an apology "Forgive me Father, it's been 6 weeks since my last confession" is in order. So, sorry.

Last time I was moaning about the place I grew up. This time I will have a little moan about a place where other people have grown up and update on where we are with the treatment and the maintenance.

The end of September maintenance came and went without any incident. It's all becoming routine now. Soon, after Christmas, I will have been going Ward 60 for two years either three weekly, or bi-monthly. They have been very good indeed and have definitely helped through this period. The nurse that gives her time for me the have the maintenance after hours is getting married in the Spring, so I need to sort a gift out for her. I couldn't have the maintenance at all, if people weren't prepared to give up their spare time for me, so I am very grateful. My haematologist and I discussed a suitable gift when I was there at the end of September, so we will have to see if we can organise that. We chatted about a "joint gift". She gets married on the day we fly to New York, which is a bit of a shame, as I would have popped along and sat at the back of the church and maybe taken some photos.

I was told at the end of September that I have an ECG which would indicate that I might have had a heart attack at some time in the past. Well, that's news to me, but I will get to the GP to be referred to a cardiologist for some further tests. It never rains...

Yet another Leica Forum One Challenge has been and gone. This was the eighth one this year - Palermo in Sicily. Despite many of the attendees liking the city, I found that it was a place without any charm whatsoever. It was dirty, unkempt, still suffering considerably from wartime bomb-damage and with a population who were discourteous and unfriendly. We were fortunate that we had an excellent hotel, The Porte Felice, which we would highly recommend. A really nice room, comfortable, decent breakfast if you want one and about 20 minutes walk from the city centre. Further, there is an excellent restaurant about 5 minutes walk in the other direction, Ristorante Gadir, where we easily had the best meal of the week. It is along a dark, unlit street, with open skips, feral cats, high rise flats in the poorest part of town and is incongruous to say the least. You could uplift the place and drop it into the west end, or Paris and it would fit right in. The situation is very odd and they are unlikely to get any tourist custom, given its location. Maybe that's what they want. Certainly we were the only tourists in there that Thursday, but our friends Jono and Emma did venture there on the Friday on our recommendation and also had an excellent meal.

The best bit about the break was the drive down to Segesta, to see the 2,500 year old Greek temple and amphitheatre. A beautiful setting on a beautiful day.



One slight worry while we were in Sicily was that I started to get pins and needles in my fingers and right hand. Fortunately, they have gone now, but they are a potential side-affect of the Rituximab, so I will need to keep an eye on that.

We also spent some time at the beginning of the week in Kent, a county that one tends to pass through as quickly as possible to get to somewhere else, which is a shame as it's a nice place to spend some time. We found the church where Ann's new-found family were lords of the manor and a lot else besides, back in the 14C, together with a very nice pub with rooms, The Five Bells at East Brabourne, which will deserve a proper visit one day. Canterbury Cathedral is lovely when you get there as the first visitors of the day, before the crowds.

This afternoon, I made some panna cotta for the first time ever, and they are not bad, even if I do say so myself. I made a Madeira and strawberry sauce to go with them and that's good too. I just have to work out where to put the candles as they are a substitute for Ann's birthday cake...

So, it's downhill to Christmas and another New Year now. Ought to get some shopping done really.

That'll be three Hail Mary's then, will it?

PS. There is some news following on from the ridiculous train delay I had at the end of August (see post below). Those very nice people at Virgin West Coast, sent me a cheque for £50 AND a free Standard Return ticket, anywhere in the country, in the next 12 months. So that's not so bad.

Sunday 11 September 2011

Maidenhead. What happened?

I walked down the High Street of the town I was born last weekend. I wish hadn't.

It must be about 30 years since I walked from one end to the other and it has changed out of all recognition and not in a good way. Maybe it's just me getting old and sentimental, or maybe it's a sign of the more significant malaise in British towns.

When I was growing up, when both my grandparents had shops in the town, it was a proper, functional, sustainable place. We could walk from my grandad's hardware shop, past the place where they sold dog meat where, if you were very unlucky, you could see some old pony being walked in the side gate. The other grandad managed a pharmacy, where he dispensed drugs from an upstairs dispensary and sent them down in a dumb waiter. Brilliant fun.

Turn the corner and the High Street still had traffic in it. Given that it was the A4, the main road from London to Bristol, this was a busy route and one which needed to be diverted, but the traffic did bring life to the street. You would walk past the large Post Office, with WH Smith on the opposite side. I would buy Airfix models and Matchbox cars from the toy department upstairs.

There were small supermarkets and local shops. There were the shoe shops with the x-ray machines where you could see the bones in your feet. There was the coffee shop where a man with a thick black beard roasted his own beans to your specification. There was a small department store with Father Christmas who was a woman.

Further on, there was the shop where we bought the school uniform and The Bear Hotel - a significant, white rendered place that was far too posh for us and then the Berni Inn and the Chinese take-away.

All this has gone, or changed beyond recognition. Shoe shops have been replaced by coffee shops. Independent retailers have been replaced by national chains or, a real sign of the times, pound shops and charity shops. McDonalds is there. The Bear Hotel is now a Wetherspoons.

The cinema was pulled down years ago and replaced by an office development that is vacant and boarded up. The place has no life. No character. No attraction.

No wonder people shop elsewhere. What or who is to blame for this? Out of town retail for sure. Poor town planning. Buying on-line is no doubt contributing too. None of these are going to go away anytime soon and the demise of the high street, my high street, will continue. Maidenhead has turned into a very unsatisfactory town and I am somewhat depressed about it.

 On the other hand, our small town now, much smaller than Maidenhead, has a deli and a butcher. It has a wide variety of shops, hairdressers, shoe shops, clothes shops, a gallery, restaurants (not chains), a jeweller, florists and a number of interesting pubs. The contrast between the "affluent" South East (Maidenhead is in the silicon Thames Valley and only 25 miles from London, so is a commuter town) and the North West (our town is an old mining town) is striking.

 I know where I'd rather live.

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.

Tuesday 7 June 2011

The Leica MP

Blasted rangefinder has gone off again. I am now convinced this is a Friday camera.

Will have to send it back again when we get home.

Provincetown

Day 5 Monday 6 June

Decided to head north and visit Provincetown at the very end of the Cape.

Arrived at around 10 and parked next to the moment to the first New England settlers. This is the tallest granite structure in the US and looks out over the harbour from the top of a hill over the town. Climbed to the top and could just see Boston through the haze on the horizon.

The attached museum is very interesting and tells the story of how the Plymouth brethren landed here first, before heading off to the "mainland".

Wandered into the town. What a difference from Hyannis. This is a charming place, with narrow streets and a really good atmosphere. Lots of interesting shops and people - it has a very large gay community - and everyone was friendly and helpful.

Went down to the docks to check out the whale watching tours. There was one boat which was just loading that seems very popular but others which seem more "personal". Overhead the woman taking the tickets for the large one say that they had seen a couple this morning - they way that the trips are sold one would think that sightings of dozens is just about guaranteed...

You can hire a boat to yourself if you want. And have $700...

Had lunch of a foot long dog and a coke and then A went in search of a cap to keep the sun off. Although it's not very hot ( yet ), the sun is strong and the Factor 30 is only just about keeping the lobsterness at bay. Found a shop selling nice caps, but a small cat logo on, but the seller advised that there is a "dog" shop further down e street. A bought a little sleep suit for the nee baby next door, due in August.

The shopkeeper also advised to go to the library opposite where some nutter had built a half scale model of a whaling boat inside the library. They wanted to put it in the museum but can't get it out of the first floor... 12 years it took him - you'd have bought he'd have worked that out. Good model though.

Opposite the library is a house with what is alleged to be $1m worth of modern statuary in the from garden. All very odd.

Left P-Town as it's known and drove round to Race Point, where there is another beautiful beach and then onto Truro and the lighthouse there. This one looks like it might be the best from a photographic point of view, but need to be there early in the morning, so need to get backside in gear a bit earlier than am doing at the moment.

Finally, dropped down to Wellfleet on the west coast of the lower Cape. This is a nice little town, with another working harbour, but not much else. It does have a theatre, though, right on the shore.

Supper at home.

Spoke with B via Skype. She's very keen to leave Japan and get to Australia, as she's fed up with being illiterate. Her flight arrives Tuesday pm our time - must be Wed am hers - so we don't expect to hear from her for a day or so as she gets settled in.

Monday 6 June 2011

Another postcard from the Cape

Day 4 Sunday 5 June

Woke at about 4:30, but properly at about 6:30, so clock getting back to normal.

Really must stop having eggs for breakfast, but had a poached egg and some very nice bacon picked up yesterday in a roll, plus some Tropicana juice and English Breakfast tea. Not at all like home...

Headed off to Hyannis this morning via the road which runs along the south of the Cape - further than we thought. Everywhere is further than you think.

The south of the Cape is much busier than the northern side, with pretty grotty ribbon development along the whole length. It's almost impossible to tell where one "town" starts and another ends. Lots of small malls, restaurants and loads and loads of motels. As close to Florida as we have seen so far.

Hyannis isn't much to write home about, but A did pick up a couple of pairs of shorts and another short sleeved shirt. He wouldn't want to look like an English man out of his comfort zone, now, would he? ;-)

Walked down to the harbour and persuaded a girl in a small restaurant to sell us two cups of coffee so that we could use the restrooms. On leaving, walked past the public restrooms about 50 yards away and found information about the ferry to Martha's Vineyard and Nantucket. Lady in the shorts shop recommended the former over the latter, as there is more to do and lunch won't cost you $90. After visiting another JFK memorial on the beach, we returned back to the cottage via a small town called Harwich, where we bought a sandwich for lunch. We won't need any dinner tonight - proving very difficult to eat "light"...

On our return, our landlord was next door and he offered to set up the wifi for us, which he has done. So, now, we can leave Skype running so that we can speak with Rebecca when she goes on line. Japan is about 13 hours ahead of here. It's 15:40 here now, 04:40 tomorrow in Tokyo, so maybe she might call later this evening.

Postcards written. Stamps cost 29c, even to the UK. Ridiculous.

Might go for a walk along the old abandoned railway later. It's so much like being at home.

Pause....

Well, we did walk to the beach, having bought a beach bag on the way. The first access road we found turned out to be private, but the lady in the bag shop told us of a road which gives full public access. Very nice beach with good clean sand. The tide was just starting to go out and more nice sand is obviously out there. One can see right along the inner forearm of the Cape to Provincetown at the end, about 30 miles away. Will go back when the tide is out.

Drove up the Cape for a few miles to see a lighthouse ( will be better dawn, or in a storm ) and then onto the spot where Marconi set up his masts to make the first broadcast across the Atlantic. Not much left there now, but again, the beaches along the east coast of the Cape are beautiful.

Downloaded "Scrabble" and played a couple of hands of cards. Must be on holiday.

Hardly taken any photographs. The light is very harsh here. Not sure why I'm surprised, it is June and we are on the same latitude as Barcelona. I need to get out more in the evening and early morning. The sun rises later and sets earlier than at home, so it shouldn't be too difficult...

Sunday 5 June 2011

New England

Day 1 Thursday 2 June

Having got back from a day at work, we left home to drive to Heathrow. The M56 was busy until about Runcorn, but cleared after that. The M40 was a different matter, and we were delayed by over an hour behind a lorry fire at Warwick. Arrived at the first Holiday Inn at about 10pm and the correct one at about 10:20. After getting a non-smoking room rather than a smoker, we had a club sandwich at about 11:15.

Typical Holiday Inn room, but very quiet considering it's location on the main A4

Day 2 Friday 3 June

The shuttle bus took us round several other hotels on the airport and eventually to T5. Surprised at the lack of lifts to get to departures, we arrived at exactly the right time to check-in. Unfortunately, the auto machine let us go through the whole process and then claimed that that there was an error. Still, the woman at the desk sorted things out and took the bags.

T5 isn't a bad place to hang around. Found that Dixons really do sell cheap M9s but not as cheap as before.

Had to wait an extra hour for the plane to leave after smoke was found in the hold. Zara Phillips and her fiancé were on the flight.

Economy seats really are pretty tight on a BA 747. The woman in front of me reclined her seat back so that her seat was about 10" from my face. The guy behind me got up several times and was a "lean on the back of the seat in front" kind of guy, so that wasn't great either.

Food poor.

Got through immigration without too much hassle (Ann was frisked twice on the way out) and found car hire place. As expected, what you thought you were going to pay is about half what you actually pay, but we did get a Jetta as opposed to a Yaris, with no power steering or windows...

Boston traffic is terrible. They should tell you that the first thing you will come across is a toll booth, and the signage is rubbish. We ended up heading out west before getting on the ring road and eventually heading south. Arrived at Plymouth at around 5 pm

Radisson Hotel isn't that bad - definitely not as bad as TripAdvisor would have you believe. Big bed. Comfortable. Quiet. A bit hot, but then again, it IS a hotel.

Walked around town for half an hour and then got the last table at Patrizia's Restaurant, an Italian place that is very popular with locals and with good reason. A cichetti to share, pasta and canollis, with a bottle of $30 wine was less than $100, excl tip. Total cost was about £70, and one of the nicest meals we have had for years. Recommended.

Room quiet and bed at about 9pm local time.

Tuesday 24 May 2011

Excellent news from NICE

After what I thought to be a false start back in February (previous blog posts refer), NICE have today issued "draft" guidance on the use of Rituximab for maintenance therapy in first remission cases of follicular NHL, such as mine.

I look forward to discussing same with my haematologist at my next session on Thursday. Maybe I will be able to have my treatment during normal hours now.

I was interviewed by the BBC about this yesterday morning, so I need to have a look and see whether I have made the cut or been spiked under an Icelandic Ash Cloud... :-)

Sunday 22 May 2011

Leica Akademie, Lymphoma Association AGM and more

Well, it has been a couple of weeks, now...

Lots has happened, since 6th May.

Firstly, we appear to have a new dog. Well, she's not quite with us yet, as she was born on Good Friday and will be ready to join us when we get back from New England. We have named her Betsy and she's a Jack Russell. Here's a photo of her trying to steal some grub from her mum.. "Ahh..."


She is from a litter of three boys and three girls and looks like a proper little cutie. We have spoken with Pippa about her and she's fine ;-)

Rebecca has set off on her round-the-world trip and, as I write this, she is between China and Japan, having already ticked off the Great Wall and Xian terracotta warriors. She seems to be enjoying herself, on the one occasion when we have spoken with her, but we do get the odd email every other day, so that's OK!

I attended a very good day at the Leica Akademie last Wednesday. The man on the Vespa is the result of that outing. I have to say that Will Cheung was an excellent host and good fun to be with - a really nice guy. Thanks have to go to all at Leica UK for helping to make this happen.

Yesterday was the AGM of the Lymphoma Association. I went to last year's at Reading University; this time it was at Nottingham and as usual it was very informative. There are a lot of new treatments coming through - the GA101 "grandson of Rituximab" looks very interesting (one of the fellow members of the Manchester Support Group has had this treatment and her lymphoma has all but disappeared), as is some of the work that the Germans are doing with a drug called Bendamustine, yet another chemo-therapy based upon mustard gas. I have probably said this before, but what a debt we owe to our Great-Grandfathers... The Association are putting my name forward as a possible "patient member" attending a meeting of NICE in Manchester in August. They are discussing the use of Rituximab and the Association feel that I may have something to contribute. I have said that I am happy to help them in their work in any way, of course. The only way that we are going to get to a better place with this is if we all play a small part.

So, now we are in that "ground rush" period before going on holiday. Only one weekend left (Sunday we have to go and see the puppy again...), and an awful lot to do at work. Just need to keep an eye on that bloody Icelandic volcano...

Oh, and I bought some tickets to go and see Roger Waters "The Wall" this afternoon. Something to look forward to in that "post-holiday-blues" period :-)

Friday 6 May 2011

Into my third year

It was the second anniversary of me discovering that I have a problem this week. Time marches on, but with the fantastic support and help of those around me, I am currently "well", which is a great thing. My haematologist spoke of 5 years as a typical prognosis when I first saw him in 2009. I fully expect to get more than that, but I know that as the years tick by, this is going to press on my mind more and more. I mustn't let it.

I have come through radiotherapy and chemotherapy pretty much unscathed and the maintenance regime that I am currently enjoying is not affecting my life at all, really, apart from having to go and receive the treatment.

I do get a lot more tired than I used to though. If I didn't know I was ill, then I would pout this down to getting older, but I am not so sure that's the reason. Having cancer, even in remission, must take it out of you.

It's "always there", in the back of your mind. It never goes away. This is quite difficult sometimes, as to all intents and purposes, I look perfectly healthy, and those around you either don't know that you are ill at all, or have forgotten. While, that's a good thing, sometimes it would be nice for those that do know (not immediate family, of course, but colleagues and acquaintances) to ask after your health once in a while. Some people do, but most people that do know have either forgotten, or just don't feel it necessary or appropriate to talk about these things.

This is a purely selfish rationale, though. It's nice to think that other people are thinking about you, but they have their own lives and worries etc. What I have promised myself, is that I will try to remember when people I know have similar problems, and I will ask after them. It's a nice thing to do.

So, things could be a lot worse. I could have been born twenty years before, in which case I would be looking at a very different future. I could have been born somewhere else - ditto. I might not have had the benefit of a supportive family, friends and employer and I might not have been able to benefit from private medical insurance. I am a lucky man and, sometimes, it's necessary to remind yourself of that fact.

Now, all I have to do is think of a third year title for this blog. Adding "Still" was fine for the second year, but something needs to be done moving forward into the third.

Answers on a postcard to the usual address, please.

The wanderer returns...

My birthday present is on its way back from the factory, having been adjusted as it should have been in the first place. It will probably get here early next week.

Which is good news, I suppose. :-)

Sunday 1 May 2011

So, the Royal Wedding has been and gone

And so has the camera.

After putting a roll of film through on the Saturday, I had thought that it was much more difficult to focus than either of my other two Ms. I put this down to the reduced magnification viewfinder. Unfortunately, this wasn't the case. The viewfinder is actually mis-aligned in the vertical plane, and will never give a coincident image, until it has been adjusted. The camera is now back in Germany, being sorted out. I have been in contact with various people there, courtesy of great assistance from Jenny at Leica UK and Andreas from the Forum, and I am hoping that it will have been returned by next weekend. It definitely arrived in Germany before this weekend just gone, so fingers crossed.

Watch the wedding in Rebecca's flat in Edinburgh with a lot of other "young people" - a good morning actually. I thought that the wedding was a great spectacle and I enjoyed watching it more than I thought I would. After that, we drove all her stuff back home, ready for her to head off round the world next week.

I also met Luke, her boyfriend, for the first time - a thoroughly decent and nice guy, if first impressions are anything to go by. I would expect nothing less!

Now, tomorrow, Bank Holiday Monday, we are off to see a new puppy, born on Good Friday. It's from a litter that belong to a niece's husband's brother, and we have been receiving photos via text messages for several days now. It looks like "Betty" is the chosen name, after some deliberation, it has to be said. Audrey was right up there for a while... I suspect that she will be the one - it's not possible to go and visit a week old puppy and not buy it. She will be ready to pick up when we get back from the US, so that's all working out quite well.

She's a Jack Russell... going to be an interesting summer.

Saturday 23 April 2011

A good Friday

I had an email from my crack dealer in Manchester to say that my camera would be arriving this week - and it has. It only took those nice people in Germany a month to make it for me and I went over yesterday to collect it. A very good Friday indeed. :-)


This thing really is a thing of beauty. The paint finish is lovely and feels "soft" to the touch. It's heavy and solid and feels like it's built like a tank. Or a swiss watch.

The wind on is already smooth and silky and the shutter has a distinctly deep "click" than my 50+ year old M2. I suspect that in 50 years time, this one's voice will have raised to a baritone too. Who knows - not  me that's for sure! I bought an Artisan and Artist black leather case for it, which looks and smells wonderful. That too is really nicely made and the leather perfectly matches that of the camera.

As I have probably said, I ordered the camera with a viewfinder especially for use with wider angle lenses, known as a "0.58 viewfinder". The image in the finder is 58% of the size of "real life", which means that you get a wider view in the finder than normal. This makes the use of a 35mm lens much easier, especially for those of us who wear glasses. I should have bought a 0.58 camera years ago - I can even use my right eye with it.

So. That's all good. I will probably take it for a spin into Liverpool later. I will post a shot or two from the first roll soon.

Unfortunately, the thing with Pippa's lead and the camera strap didn't work out, but it was a nice idea...


Wednesday 6 April 2011

Keep positive

Musn't let this get to me. This will work for me.

Bad news on the Rituximab maintenance

I have been keeping tabs on the progress of Rituximab as it goes through the NICE approval process (previous blog posts refer, especially from late summer / autumn last year). Knowing that it was around this time of the year that the committee were supposed to be making a judgement, I had a look at the NICE website just now. It has indeed been considered by the committee and this is their judgement:

The Committee is minded not to recommend rituximab for first-line maintenance treatment of people with advanced follicular non-Hodgkin’s lymphoma that has responded to first-line induction therapy with rituximab in combination with chemotherapy.


The Committee recommends that NICE requests from the manufacturer further clarification, which should be made available for the next Appraisal Committee meeting.
 
Now, there is a door ajar there for the manufacturer to provide more information, but, reading through the rest of the report (available here: http://guidance.nice.org.uk/TA/Wave19/59/Consultation/DraftGuidance), this is not good news.
 
I am fortunate that, because my haematologist has recommended the treatment, BUPA will pay for it. The question that is raised by this report, however, is "How effective is this maintenance?"
 
Well, a conclusion is that it is effective, but that the manufacturer could not demonstrate how effective.
 
The Committee concluded that the available evidence shows that first-line maintenance treatment with rituximab improves progression-free survival compared with observation, but that the size of any overall survival benefit could not be determined.
 
Further, there is no evidence that I have seen on my first skim through, that suggests an overall improvement in life expectancy, rather than just a shifting of the need for second round of chemotherapy. 
 
I need to study the report in more detail later, but overall this doesn't look great.

I need to get out and take some photographs...

Sunday 27 March 2011

Birthday present

I have ordered a 50th Birthday present.

As if going to the US in June wasn't enough, I have ordered myself a new camera. This will be the first new Leica that I have ever bought and I am going to have to wait for it to be made. They do not make them on a normal production run any more, but in small batches when they get sufficient orders to dedicate a week or two to production.

It's possibly the best looking camera ever made (in my opinion, of course - your's may vary!). It is an "MP" model, much like  this one.


Delivery dates are being quoted as roughly eight weeks, so, in maybe seven week's time, I will be getting a call. It would be great if it arrives before the end of May, but it's OK if it doesn't.
The black finish is paint on brass metal top and bottom plates. Over time, the edges get worn through, allowing the brass to show through the paint. This brassing gives the camera significant character and is a very personal thing. My previous M cameras have both been chrome plated and they do not wear at all. They remain looking as good as new for decades.

All the gears internally on this camera are brass and even out of the box, the action is extremely smooth. Again, over time, as the gears really bed in, the wind on gets smoother and smoother. 

It does have a built-in meter, but it is lacking the auto-exposure feature and the electronically controlled shutter mechanism of the M7 which I currently own. It will continue to work properly even in the absence of a working battery. It really is the ultimate mechanical camera and it will be interesting to see whether it changes my photography. I suspect I will get more incorrectly exposed shots!

I am going to try to get Pippa's old lead made into a strap for it. I will speak with the shoe repairer in town to see if he can attach the ends from a Leica neck strap to the leather of the lead. I can't see that it would be too difficult to do with the right tools.

So, more info when I have it.

Crufts

As suggested at the beginning of March, we did go to Crufts this year.

It was a very interesting day (well, half day) and it was good to see all of the Kennel Club approved breeds of terriers there.

The Norwich Terriers are nice little dogs as are the Welsh Terrier, but Ann seems to have her heart set on a Border - the scruffy, common breed :-)

We will still wait until we come back from the US in the summer, but it might be an idea to investigate local breeders etc now so that we know who might have a litter when we will be looking.

Soon comes round again

It's been nearly eight weeks since I last went for a top-up and Wednesday will see me back at the Countess for another dose of maintenance. This will be number four out of twelve.

I haven't experienced anything untoward, but I do think that I have had more colds this year than I would normally do. This is a known issue and not unexpected, given that the immune system is compromised to a certain extent. It seems that people on longer term Rituximab also have more likelihood of heart and lung problems, but I'm not sure what can be done about that. Look after your heart and lungs, presumably...

I am still being treated via Bupa, out of hours at the hospital, but I have been watching what is happening with the NICE approval. It seems that first remission Rituximab maintenance is still going through the system and should, with a bit of luck, be out the other side as anticipated in the Summer. This will mean that I don't have to inconvenience people at the hospital and can receive the treatment during the day like everyone else. That will be much better.

Keeping focussed

This month, I have been mostly trying varifocal glasses. Or rather, I haven't.

I bought some new glasses this time last year and at that time, the optician asked me whether I had considered varifocals. Not wishing to admit to my age, I said that I hadn't and didn't feel the need to.

Well, over the last 12 months, I have found myself taking my glasses off to read, and write and do other close work. Maybe it's time I went back and got myself sorted out, I thought.

What a mistake.

The first pair I tried were absolutely useless. Virtually nothing was in focus, they gave me a headache and I was amazed at how narrow the focusing area was. So I took them back and complained. The optician retested the fitting and sent the lenses back to be replaced.

These weren't much better. I could just about focus at a distance and close up, but middle distance was all wrong. Peripheral vision was virtually non-existent and they'd be extremely dangerous for driving in as a glance over the shoulder to overtake could result in something very nasty happening. Don't even think about reversing and looking over your shoulder.

These weren't even the cheaper varifocals - these were one step down from Zeiss ones (which cost about £400, just for the lenses only). Mine were £280.

So, yesterday, I took them back and have now had them changed for another pair of distance only glasses.

Much better.

Thursday 3 March 2011

Birthday weekend sorted out

It's my lucky year this year.

Not only is my remission going to plan, but it's a significant birthday too, so there are several plans afoot to cope with such a momentous occasion.

While the main holiday is obviously to the States in June, we have been thinking about what to on my birthday weekend later in the year. It's at the beginning of the summer holidays, so foreign travel is out.

One idea we had was for a weekend in Canterbury (see the last entry). This is a great idea - until you realise why all the hotels in Kent are full that weekend. I thought it might be because people we on their way to the channel crossings, but it's worse than that. The Open Golf is being held near Sandwich - hotels for miles around have been fully booked for two years or more...

Ann suggested that we should go somewhere we have been before, but not been for a while.

So, next idea was to go to the Inn at Whitewell in the Trough of Bowland. It's only an hour or so away, but a fantastic spot and great for walking. We had a very nice stay there about ten years ago with the kids and some friends and one of the best meals we have ever had. But then again, we can go there virtually any weekend for a walk or a meal (subject to cost!).

Alternatively, there is the Acorn Inn at Evershot in Dorset. Another terrific place to stay with great rooms and excellent food.

Finally we decided to head off to Norwich. We had previously been to a very nice hotel (I'll link to it when we get back...) and have decided to return. There are some friends there that we want to see again that we haven't seen for years and there's some family stuff that we can look into while we are there.

No progress yet on the dog front but we are working on that. A trip to Crufts could be on the cards next week (Saturday is terrier etc day...). Lots of photo opportunities, plus lots of different dogs to see. Having never been before, it could be very interesting. We really do need to get another little friend.

Saturday 19 February 2011

Steady as she goes II, Boston and Palermo

First things first. The third maintenance session went according to plan, but I notice that the haematologist has called me back after 8 weeks, rather than two months next time. Not that it makes a great deal of difference, but my carefully set out calendar through to August 2012 has been somewhat messed about with.

I spoke with him about the mistletoe. I explained about the research that I'd done and he looked at me as if I were mad. Clearly, this treatment hasn't reached the NHS yet, not even for druids, so I think it's probably for the best if I drop this idea for a while. I will check out the link that Phil on the Leica Forum sent to me. The treatment is common in Germany, so some more work may need to be done.

I was told not to worry about the odd itch that I have had either. Itchiness is a symptom of Hodgkin's Lymphoma, not Non-Hodgkin's Lymphoma apparently. I'm pretty sure that I had read otherwise, so that's another thing to check up on.

So what else has been happening? 

Have arranged all the accommodation for the New England trip now. We went with a different cottage on Cape Cod than the one first planned. The first one still hasn't come back to me with a contract, despite a reminder, so that's his loss. The new one is in a smaller town "inside the elbow" of the Cape, and it looks great.

I have also booked the hotel for the Palermo trip in October. This one was Number 1 on TripAdvisor, but still extremely reasonable. TA haven't let us down so far, so fingers crossed for this time. I think that we will try to hire a car on the Friday and see if we can't take a bit of a trip round the island. There is a fabulous looking Greek temple not too far from Palermo that looks well worth a visit. Especially if you've not visited any Greek temples before.

Taking of temples, this week's POTW was taken yesterday in Canterbury Cathedral. What a fantastic building, especially, as yesterday, when there aren't very many tourists about. Will definitely have to go back - but out of season.


Saturday 29 January 2011

Photography at night

I have decided that this year, I will mostly be taking photographs at night. Well, mostly might be overstating it a bit, but "sometimes" might cover it. "More frequently than in the past" might also be more accurate.

While we were in London last weekend, I took most of my shots in the evening or at night. Obviously there are some additional challenges there when compared to daytime shots, but the dramatic contrast between the lit and unlit areas is, to my eye, quite pleasing. For example, here's one of Tower Bridge, Been done a billion times before, but the floodlighting certainly adds something to the drama of the scene. I metered off the stonework while we were crossing and the exposure has worked out perfectly.


This week's "Photo of the week" was also taken on that visit - that one was at dusk and has an exposure time of about 4 seconds.

There are also examples that I took in Venice for the "Night Challenge" that I like. Now, I must make sure that I get hold of a stock of Neopan 1600 before it all disappears. These two shots were with Tri-X, though, which is probably the best all round black and white film ever made.

The book arrived yesterday. I am very pleased with it. The better quality paper is probably worth the addition couple of quid. One frustrating thing, ironically, is watching the track page of the FedEx website. "Come on! It's been stuck in Paris for 12 hours now! What's going on?" kind of thing.

Monday 24 January 2011

Mistletoe

I have been doing a bit of research into mistletoe. Apparently, it could be very helpful for people with low grade, indolent, follicular B-Cell non-Hodgkin's lymphoma - like me. It boosts the immune system for a start.

So, next time I see my specialist (Wednesday next week), I will ask him whether he knows anything about it.

While in London at the weekend, we went into a herbalist in Neal's Yard and asked about it. The assistant was extremely helpful, but they were reticent about selling it to me, given that I actually have something wrong with me. If I were just a healthy Druid, she'd have had no problem. In fact, for the first time in my life, I was asked "Are you a Druid?" I look so much like a Druid, I'm amazed she had even a slight doubt.

So, it's "Vitamin R" session Nr 3 next week.

Good news is that progress is being made with the NICE approval and with a bit of luck it will go onto the approved list before the summer, meaning this nonsense about turning up as the ward closes will be over and I can have the treatment along with everyone else.

Checking the website at Blurb, I see that my book is due for dispatch tomorrow, so with a bit of luck it will be here by Friday. I'm looking forward to seeing it, of course and, since it's only 10x8 inches, I will be able to carry it round in my briefcase easily to show off what I do.

I have a few prints being printed this week for hanging on the office meeting room walls. Which reminds me, I must do an invoice for them...

Other news? Well, I need to research the possibility of hiring a long lens to go on holiday with this year. We have booked to go to New England in June and a long lens would be very handy when it comes to watching (and shooting) whales. I'm not sure about insurance for one, though, but if I get a chance, I might pop into Calumet this week or next and ask. Will definitely take the binoculars of course. We haven't been on a long haul holiday for nearly 10 years (indeed, we've only been long haul once before at all), so the experience is going to be an interesting one. We fly into and out of Boston, but spend a week on Cape Cod, then follow up with a bit of touring round the coast and the countryside. Should be good.

Only 4 months away now.

Tuesday 18 January 2011

A work in progress

I finally got round to putting some of my photographs in a book.



I will let you know how it looks when it arrives - hopefully before the end of January.

Saturday 1 January 2011

A very bad December


Now I can do a post about what happened during December.

Starting with the treatment, I did manage to be seen on the Friday evening. The nurse who had volunteered to stay behind on the Thursday also did so on the Friday too, so that was much appreciated. Clearly, this is proving much more difficult for him to organise than he first thought (especially as he’d been in the US for several days at a conference, running up to the treatment day). Maybe, if he is actually in the country, February’s session will run more smoothly. We will see.

However, as you will have gathered, the big news for December, was that Pippa died. She was absolutely fine on the Wednesday evening until about 9:30, when she took herself off to one of her favourite chairs, in the dining room, overlooking the back garden. I went downstairs to let her outside at bed-time, around 11:30, and found that she had been sick in several places around the house. I let her into the garden while I cleared this up, and found that she wouldn’t (or couldn’t) come back. She was lying on the grass, in the cold and obviously pretty unwell.

I picked her up, brought her back in and settled her into her bed.

In the morning, she was pretty much lifeless. She couldn’t stand and her breathing was laboured and shallow. I took her to the vet and waited outside with her until he opened. She was on the passenger seat of the car, and her breathing more or less stopped while we waited. I couldn’t feel a heartbeat and thought that she had died then.

On his surgery table, he heard a faint beat and I obviously left her with him. I kissed her on her head as he took her into the treatment room and she just about managed to look at me. She died at around 11:30. The vet thinks that she probably had a massive stroke on the Wednesday evening. She was only 9 ½ and she was a beautiful dog.

We will collect her ashes after the New Year holidays are over and take her up to Thurstaston Common, her favourite local walk. Lots of squirrels to chase for eternity up there. (Tears are rolling down my cheeks as I type this…)

The house is so empty. Yesterday, New Year’s Eve, was the first time in those 9 ½ years that I had been totally alone in the house. She was like a Philip Pullman daemon. She was always with you and I reckon that I spent more time in her company than Ann’s. Her loss has been terrible. I loved that dog.

So. We will need to buy another dog sometime this year – probably in the Summer when we get back from holiday. A 50th Birthday present, maybe. The house and the family is now incomplete without one.