Still My Turn This Year

Nearly the end of another year...

2011-12-22T20:31:00.002Z

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

2011-12-22T19:49:00.003Z

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.

BP and Magnum

2011-11-26T20:39:00.000Z

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...

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

2011-11-19T16:28:00.001Z

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...

It never rains

2011-11-17T20:31:00.002Z

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.

Sicily, panna cotta and a confession.

2011-10-22T21:11:00.006+01:00

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.

Maidenhead. What happened?

2011-09-11T16:26:00.001+01:00

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.

Let the train take the strain

2011-08-30T12:39:00.000+01:00

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...

NICE

2011-08-14T19:33:00.003+01:00

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.

500px

2011-07-30T10:54:00.000+01:00

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...

<p><a href="http://500px.com/andybarton">andybarton</a> on <a href="http://500px.com">500px</a></p>

50

2011-07-17T12:14:00.001+01:00

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 beingthis 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.

Surrogate Motherhood

2011-06-26T15:32:00.007+01:00

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 :-)

British Airways BA238 Virus

2011-06-25T15:23:00.002+01:00

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...

The weather breaks

2011-06-10T21:51:00.000+01:00

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.

America and the killing of the butterfly.

2011-06-09T21:46:00.002+01:00

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

2011-06-09T13:37:00.003+01:00

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...

2011-06-09T00:35:00.001+01:00

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.

The Leica MP

2011-06-07T11:32:00.000+01:00

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

2011-06-07T11:30:00.001+01:00

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.

Another postcard from the Cape

2011-06-06T13:01:00.001+01:00

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...

New England

2011-06-05T19:49:00.000+01:00

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.

The BBC have done an article about me, the Rituximab and this blog

2011-05-27T10:03:00.000+01:00

Which is very good of them!

Thank you Helen.

BBC News - Lifeline to blood cancer patients

Excellent news from NICE

2011-05-24T10:53:00.000+01:00

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... :-)

Leica Akademie, Lymphoma Association AGM and more

2011-05-22T19:35:00.000+01:00

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 :-)

Into my third year

2011-05-06T09:23:00.001+01:00

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...

2011-05-06T07:57:00.000+01:00

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. :-)

So, the Royal Wedding has been and gone

2011-05-01T20:14:00.001+01:00

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.

A good Friday

2011-04-23T10:41:00.001+01:00

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...

Keep positive

2011-04-06T13:36:00.002+01:00

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

Bad news on the Rituximab maintenance

2011-04-06T12:20:00.004+01:00

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...

Birthday present

2011-03-27T15:57:00.001+01:00

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

2011-03-27T15:29:00.000+01:00

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

2011-03-27T15:25:00.000+01:00

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

2011-03-27T15:15:00.000+01:00

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 shgoulder 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.

Birthday weekend sorted out

2011-03-03T20:12:00.000Z

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.

Steady as she goes II, Boston and Palermo

2011-02-19T19:59:00.001Z

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.

Photography at night

2011-01-29T16:16:00.000Z

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.

Mistletoe

2011-01-24T20:37:00.000Z

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.

A work in progress

2011-01-18T23:27:00.002Z

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

A WORK IN PROGRESS by Andy Barton | Make Your Own Book

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

A very bad December

2011-01-01T14:36:00.003Z

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 50^th Birthday present, maybe. The house and the family is now incomplete without one.

My dog died this week

2010-12-19T17:08:00.000Z

I will have to wait a while to write anything about it, but she has left us with a huge dog-shaped hole where a little dog used to be.

A frustrating day

2010-12-09T19:13:00.000Z

Having received the call from the Consultant last night, I phoned the hospital this morning to confirm that I wouldn't be needing the appointment at 9 am. They confirmed that I was booked in for an "Open Appointment", which allows me to arrive late in the afternoon session.

During the morning, I called the Consultant to see whether we were still OK for this afternoon, only to be told that he hadn't been able to confirm with the hospital authorities that the nurse who has now offered to stay this evening would be paid overtime for her efforts. I told him that if necessary, I would pay her cash for staying behind so that she would be sure of being paid. He asked me to leave this with him until lunchtime when he should have been able to speak with the finance authorities to confirm.

He called just after lunch. "Yes, everything is fine for this afternoon. Please come in at 4:30"

That's progress...

5 minutes later - phone rings again. "Sorry, just had a call from pharmacy to say that their drug making machine has broken down and they won't be able to mix up the drug for you this afternoon".

Good grief. This is now getting beyond a joke.

He then told me that he would be trying to find someone to help us out so that he could give the treatment to me before Saturday lunchtime. Obviously I told him that I would make myself available at any time, but it really shouldn't need to be like this.

Why he couldn't have just filled out the bloody form to make a special case to the Finance Department to have this done under the NHS, I don't know. This is just ridiculous.

Finally, at around 5pm, he called me to confirm that I should attend at 4:30 tomorrow afternoon. He has got one of the nurses to stay behind on a Friday evening to help me out.

So, let's just hope things go more smoothly tomorrow. I will obviously have to attend straight from the office (having been to a meeting in Liverpool ion the morning), but at least it will have been done.

Fingers crossed.

PS - the treatment is slowly going through NICE, so hopefully by the middle of next year, all this will be a thing of the past. We will see...

Problem...

2010-12-08T18:28:00.001Z

The nurse who gave her time (or that should be "sold" her time) two months ago so that I could have this treatment out of hours cannot do the same again tomorrow. I have just had a call from the consultant to say that he found this out about 5:30 this afternoon. This is not helpful.

So, tomorrow morning, he's going to have to see if he can find another nurse to remain behind, or even ask one of them to come in specially on Saturday morning. Unfortunately, he's off to Hong Kong for Christmas on Saturday evening, so this is all looking very pear shaped at the moment.

If we can't do this before Saturday lunchtime, it will be after Christmas before we can do it. That'll be the week when we are going to Scotland with Rebecca.

To be honest, I can't think of a very good reason why we just can't do this in the BUPA hospital and have done with it. It's only giving someone a drug in a bag of saline after all.

Not happy.

Blimey. Nearly a month since the last one.

2010-12-07T20:10:00.001Z

That must be good news.

This week sees the second of the maintenance doses of Rituximab and so far so good with this. I have had a cold for a week, that's proving more difficult than normal to shift, but that's to be expected. So, off to the Countess I go on Thursday. It appears that I have two appointments - one at 9 am and one at about 4 pm, so I will just go along with the flow and see what happens.

It was the Christmas meal with the Lymphoma Support Group yesterday. A very good meal indeed, I have to say and it's good to chat with people for longer than is available during normal meetings. It turns out one of the members worked for years with the father of one of my friends from school - the school is 200 miles away from Manchester. It's a very small world.

Another one of our party is currently going through her R-CHOP session - she's on 6 out of 8 sessions. Her hair has fallen out etc. Unfortunately, it's only 2 1/2 years since her R-CVP session, so my thoughts are with her, and I hope that what we are doing over the coming months lets me have a bit more time than that. She is on a trial of Gaudi, "son-of-Rituximab" as part of the R-CHOP (or should that be G-CHOP?), so let's hope that does the trick. According to the fellow last month, the results are looking promising.

Had a flu jab at the GPs a couple of weeks ago. As I was putting my shirt back on, I mentioned to the practice nurse that I have NHL (which she would have read in the notes anyway of course), and she then offered me a pneumonia vaccine. Protects against 23 different strains of viral pneumonia apparently - for life, which is handy. Maybe this is why I have had the cold...

I do get more tired than I ever used to though. Or that might just be because I'm about to enter my 50th year... who knows?

Very busy at work. The big job looks like it might actually be getting somewhere this year, so next year could be extremely busy. Lots to do if we get over the Christmas hurdle.

Can't say I've been very impressed with the very cold weather. It's only got down to minus 7C here, but other places in the NW have been down to minus 12 or more. Our road has been a sheet of ice for about 10 days now. Both yesterday and today it took me about 2 1/2 hours to get to work (yesterday Blackpool, where it was snowing heavily - most unusual) and today in Salford. Just insane traffic today. In all my years of driving it never ceases to amaze me how traffic can be completely stationary for miles, yet there appear to be no reason why - it just seems to clear by magic for a couple of miles and then come to a standstill once again. Something to do with wave theory, I think.

I have found a very interesting family present for Christmas (well, I think so, anyway). I won't let on what it is, of course, but it will be good to use it on Christmas Day. It's unusual - that's all I'm saying. Should be delivered this week with any luck.

Apart from that, I've taken hardly any photographs in ages, what with the miserable weather and this cold. But the book is coming along... so that's OK.

Steady as she goes...

2010-11-13T11:16:00.001Z

That's it really. Settling into a new rhythm of on-going treatment. It's now half way through November, so I have another dose of Rituximab in about three week's time. So far so good - I am not expecting any obvious side effects (because there aren't any to speak of), but am on the look out for non obvious ones.

Principally, people receiving this treatment might get 4 or 5 times as many colds and other minor infections as someone who doesn't have a compromised immune system. Given that this is now the time of year when these things become more prevalent, I have reverted into "don't get swine flu" mode, by being careful who I stand next to on the tube, avoiding people with obvious colds, using a hand rub (for what that's worth) and so on. As I said, so far so good.

I haven't been invited for a flu jab yet this year though, which has surprised, me. Maybe I should call the GP during the week.

Attended a meeting of the Lymphoma Association for the first time in ages on Wednesday last week. I have missed the last few meetings due to work commitments, and it was very good to catch up with people there. Indeed, it's good to see people still there! There was a very good talk by one of the clinical research doctors from the Christie Hospital this time and it's great to learn that there are drugs and treatments coming along that are second and third generation monoclonal anti-bodies that are promising to be more effective than Rituximab is. Maybe that's what will be in store in the future.

On the same Wednesday, I went to a presentation of the Leica Book to members of the Blurb community in London (Blurb is the publishing house that prints the books). Bill Palmer had put the PowerPoint together and asked me whether I would offer some "wing man" support while he did it. Although it wasn't as well attended as we had hoped, it was an interesting lunchtime. So far we have sold around 240 of the books and the total raises is well over £10,000.

What else has been happening? The judging for the Venice competitions is ongoing - if closes on Friday. I'm not winning this year, but I'm not losing either, so that's fine with me. There are some interesting entries this time round and the Night Challenge was a great idea. I will post my two shots here when the judging is finished.

Still trying to plan what to do for my 50th next year. When I see my haematologist next month, I will double check with him about foreign travel (especially outside the EU). If he says it's OK, then I think that taking the plunge and going over to New England could be a really interesting couple of weeks. I do fancy watching some whales. Let's see.

Rebecca has bought her round the world air ticket, so three of us could be away at the same time. That could be interesting!

Now that the nights have drawn in - it's got beyond "drawing in" - I might think about putting together an album of my own stuff. I just started having a play with the Blurb software today and I have also downloaded an alternative that I might try out. Could be an interesting exercise going through all my old shots, rescanning and reprocessing to get them right for a book project. I will keep posting experiences here.

Loads of new stuff on my website today

2010-10-24T19:25:00.000+01:00

Have spent the afternoon scanning photos from Venice

http://www.andybarton.com

About time for an update

2010-10-22T20:17:00.001+01:00

Lots has happened since the last post.

The Black Country Museum is an odd place - more so when it is absolutely tipping it down all day. Maybe one for a Spring visit - or maybe not. Picked up a couple of interesting shots though - I quite like this one.

On the Thursday I attended the hospital at the close of business and one of the senior nurses and the consultant stayed behind for a couple of hours to give me the Rituximab. He hasn't quite sorted out the payment situation for this yet, but I am sure that by the time the next round comes along in December, that side of it will be done.

It was actually very pleasant sitting there chatting to these two on a one-to-one basis (if that makes sense!)

The following week, we had off as leave, ready to go to Venice for the Leica "One Challenge". Drove down to my parents' house on the Tuesday and had a very nice lunch in the Flowerpot at Aston, near Henley. First pint of Brakspears for a long time. Then on the Wednesday, we went to an open-air museum near Chichester. More interesting than the Black Country, although the miller could talk for England. Fortunately, we were saved from a gristy end by a party of 9 year olds and were able to make our escape. Lunch in The Lanes in Brighton - I might need to get back to the car park with my car-park consultant some time - followed by a walk along Beachy Head.

What a very unpleasant place that is. I found myself looking at anyone walking along the headland thinking "Are they going to jump? Is he? What about her?" I knew that there is a chaplain who patrols the head, but it's quite sobering when you actually see him in his red car with the yellow flashing lights. The floral tributes, 20 feet away from the car park and 6 inches from the drop are pretty grim too. All in all, not a nice place.

Then, onto Gatwick and a flight out to Venice on Thursday morning.

The weather there was fabulous and we had a very good weekend staying in an apartment owned by a friend of our Norwegian friends. This place was only 5 minutes from San Marco, so very handy. The wellies were handy for the high tide on Sunday morning too :-)

Friday's dinner was in the place where we went on the last night of our previous trip. Very friendly indeed and good value "for Venice".

The Challenge was very well attended and the meal (for 30) that I organised on the Saturday evening was very good.

All in all a very good weekend.

Now, to find two photographs worth entering. The night time one isn't too hard, but the day shots just wouldn't come. Oh well - there's always next year!

BUPA to the rescue

2010-10-02T16:49:00.000+01:00

Well, not exactly the rescue, but BUPA have agreed to pay for the ongoing treatment. Excellent news. I am feeling a little like a guinea-pig, though, as the regime that we are now going to pursue is one of a session every other month for two years. It seems that there are various ways that the Rituximab is given for this purpose (including six doses all at once, once per year, which sounds a bit drastic), so we are going to go down the middle road.

A slight complication is that in an ideal world, the best place to receive it is on the Ward in the NHS hospital where they deal with this all day every day and where I received the treatment early in the year. However... BUPA cannot pay for treatment during a normal NHS clinic. So, my haematologist is currently negotiating with a couple of the specialist nurses with regards to some overtime so that they can slot me in at the end of the session. I haven't heard anything from him yet (what's new), but I anticipate a call on Monday to confirm that it will be after clinic on Wednesday next week. I can see that a couple of bottles of red are going to be required a s a special thank you to these nurses...

While I was with him on Wednesday this week, I saw the CT scan images done on Monday. There certainly seems to be much less disease than even in the mid-treatment scan, so that's good news too.

Off to the Black Country Museum tomorrow for a wander and a look-see, so hopefully the weather will hold.

Back to "business as usual", in more ways than one

2010-09-26T22:00:00.005+01:00

So, back at home and work for a week now. If things go to plan in the coming week, we are going to be extremely busy getting my main project to a milestone at the end of the year.

I say "project", but I really mean at least 4 projects. So, from being relatively quiet for the first six months of this year (which has obviously been very beneficial given the road I have travelled), the last three months could well be manic. I hope so - it's been over 4 years getting to this point on this scheme and it's about time that we were in a position to be able to move things forward. It's a difficult time for our partners, though, so we need to be mindful of their plight as we move forward.

It's also back to business with the treatment. Whilst I still haven't heard from the consultant - nothing since I spoke with him back in August - I will be seeing him on Wednesday. Before that, tomorrow in fact, I have another CT scan. I ought to count them up via the entries into this diary, but I reckon that this must be at least the sixth scan now, plus the PET scan. If every CT is worth 400 chest x-rays, I'm now looking at 2,400 chest x-rays, plus the PET scan, in the last 15 months. That can't be very good for you in itself, but the scans are needed to check on progress with everything, so "hey ho".

I should be able to find out about the funding for the maintenance, or not as the case maybe. Given the doubt about even the licensing of the Rituximab for maintenance, I am less hopeful than I was before. Some good news is that an EC committee has approved it for this use only last week. While this has no direct bearing on policy by NICE over here, given that they are to consider it for this use over the next 9 months, this must be a positive sign. All the people I have spoken with in the NHS and NICE about this have been most helpful, so I am very grateful to them. At least I can find out some of what is going on with this treatment in the wider context, even if my consultant isn't the one who is telling me...

I will do an update after Wednesday.

Skye is now fading into memory, but I have had some fun over the last few days either processing the last of the film, or scanning the Hasselblad slides that came back from the processor at the end of the week. A 6x6cm slide is really something else (4x5 inches is the next step up :-) ) and there are a couple that I have been pleased with. They are on my website if anyone wants to have a look.

Next thing is Venice in just under 3 week's time. Should be a good do - we have 22 confirmed for dinner, so it's getting to be nearly as popular as the Berlin meeting three years ago. Will have to go through my old slides from Venice and see what's a likely candidate for a re-shoot!

Then, autumn and winter set in. But, the tour round France/Italy/Switzerland/Germany/ Luxembourg/France won't organise itself. That's going to be pretty tricky to get everything sorted. There's a lot of ground to cover, and we don't want to spend an entire fortnight in the car, so rather than visit a lot of different towns during the time we have, it might be better to find 3 or 4 bases, where we can spend a couple of days in each, before moving on. Lots more work needed there, I think. But, it needs sorting as small hotels, such as the ones we have been looking at, get full very quickly.

So, an early night is in order. I think it's "nil by mouth" before the scan tomorrow morning, but I'm sure a cup of tea won't hurt...

More on Wednesday - if there's anything to report.

And finally, our thoughts are with Jan W, who has had some surgery for breast cancer this last week. Let's hope that there's very good news on it's way to Jan very soon.

Skye

2010-09-19T20:23:00.000+01:00

Got back from Skye yesterday evening. 9 hours in the car, 8 of them driving. It's quicker to go to the US.

Proper update later in the week.

No news is..

2010-09-02T13:39:00.002+01:00

... no news.

Still no word from my haematologist, despite almost daily emails, phone calls and me sending him information regarding the PCT, NICE, etc.

The project manager at NICE, responsible for guiding through the approval of Rituximab as maintenance for people like me wasn't very encouraging yesterday (but at least he DID phone back). He was suggesting that the drug isn't even licenced for this use, let alone approved. Approval will take until next Summer, if everything goes according to plan and NICE approve it - that's by no means certain.

All in all, very frustrating and not satisfactory.

I have a meeting with my GP later this afternoon, and will start to explore alternative consultants, including seeing whether a transfer to Christies in Manchester would be possible. They are a large teaching hospital with the biggest and best oncology department in the North of England. Maybe they would be more able to access these new treatments.

Who knows. I certainly wouldn't be any worse off than I am now.

A grand day out and "Doing It Oneself"

2010-08-30T16:40:00.010+01:00

The weather forecast wasn't brilliant yesterday (Sunday of the Bank Holiday weekend), but we decided to go to Llandudno for the day regardless. It absolutely tipped it down on the A55 - a proper cloud-burst. Very unpleasant. But by the time we'd come down from the Clwydian Hills and towards Colwyn Bay, things brightened up a bit.

Llandudno is an odd place. It pretends to be quite up-market, but scratch the surface and it seems to appeal to the same demographic as most of the other north western seaside towns. Only, here, all of the tat and the burgers are restricted to a narrow strip at the western end of the north beach. The actual prom is pretty dead, with a wide walkway and lots of 3-Star hotels fronting onto the road. All the activity takes place one block inland - presumably to keep away from the on-shore winds - which were pretty strong yesterday.

After an hour or so of that, decided to head over to Anglesey (second time in a month!), and go to South Stack, beyond Holyhead. A busy spot on top of the headland, but a great lighthouse on a smaller island, accessed (in good weather) by a foot bridge (closed yesterday). This place is so far west that the mobile phone service is provided via Ireland... Definitely worth coming back to when the weather is a bit less clement - would be great with some incoming clouds or a storm. One to remember. Came back via Beddgelert. What a lovely little spot - again, one to come back to when the hoards have all gone home. And finally, a quick stop to grab a shot of Snowdon from the usual spot at Capel Curig.

Have done some investigation into how PCTs work, particularly with regards to providing funding for drugs and therapies which are NOT NICE approved. Having spoken with the finance department of the PCT, it is possible to do this, on an individual basis, so I have provided all the information I could find to my haematologist. I will be very disappointed if I find that he hasn't already started to do this himself, on my behalf. It seems to me that you have to take charge of these things yourself if any progress is to be made, as others don't have the same sense of need that you do. Despite several emails, my haematologist hasn't come back to me about progress on this, or the Bupa application yet. A "gentle" reminder is in order, I think.

Been a cracking day today though - let's hope that this is settled now for 3 weeks. Somehow, I think that might be wishful thinking ...

Struggling

2010-08-24T17:05:00.000+01:00

I have emailed the haematologist a couple of times but have had no response from him as yet - nor his private PA who has been very good in the past.

This morning I spoke with his NHS PA, and asked her whether she knew if he'd been in contact with Bupa yet. She did not know, but she did confirm that he has written to my GP informing him that he has now taken me back onto his private list. I suppose that's something at least.

I advised the NHS PA, as I had done the private one in the emails, that I am on leave as of Friday next week, and would really appreciate some progress on this before I go away.

I have also made an appointment to see the GP before I go on leave, to update him on the situation and see if there is anything that he can do to help. But, as always, you can't get to see him until the middle of next week (literally).

I will continue to pester my man until I get an answer from him. If Bupa can't help, I will be seeing my MP at the first surgery he has on the new term...

I did an inventory of my film at the weekend, in readiness for the Scotland trip. I have 2,700 frames in the freezer - mostly black and white (Acros and Delta 100), but a lot of Astia too, that needs "shooting up". So, we're probably all set in that department.

I'm not sure how long it will take to process that lot, but it will keep me quite for a while... I will need to buy some more chemicals, especially for the slide film Note to self to sort that this week.

Apart from that, I'm just trying to work out how to find £666 per month for the next 5 years...

Bad news

2010-08-19T10:28:00.001+01:00

Disappointed, but not very surprised, sum up my feelings up really.

After waiting nearly an hour and a half beyond my appointment time, I saw the haematologist yesterday and he had bad news for me. He has not been able to persuade whoever needed persuading that I should go on the Rituximab maintenance. Indeed, he said that his colleagues thought that he was mad to even suggest to me that this would be even an option.

Apparently, the Rituximab is licenced for use in my circumstances but has not been approved by NIHCE for this purpose yet. They may be making a judgement in November, which on the face of it sounds positive. BUT (big “but”…), they would be approving it for maintenance use starting three months after the end of the initial 8 session course of treatment. By November, I will be 4 months post-treatment and will not therefore qualify.

Bugger.

So, I am now in discussion with BUPA to see whether they will pay for the maintenance. One other slight problem is that the recommendation is now no longer one course of Rituximab every quarter for two years, but for five years, i.e. 20 treatments. At around £2,000 per go, we are talking forty grand’s worth, over the five years. BUPA have asked for a full report from the haematologist with details of my condition, the R-CVP treatment that I have recently completed and why he considers it to be in my best interests to have the maintenance. Given that this treatment needs to start at the beginning of October, he needs to get his finger out and get the report to them ASAP.

I mustn’t forget that the maintenance isn’t without its side-effects – people who are on the Rituximab for long periods tend to be more susceptible to other infections for example, as the white blood cell count is depressed by the drug, but the long term benefits are very positive in overall terms. Given that the maintenance regime has now gone from two to five years, I was wondering last night whether we are working up to a situation where a dose every quarter, for ever, is an effective “permanent” solution to keeping the disease under control. I am sure that by the time five years is up, someone will have done more research and a better picture will have emerged.
So. Until I can get an answer from BUPA, I am a bit in limbo.

I could be really selfish and cruel and mention the treatments that I have seen being given to frail old people in their nineties, whereas I am a “fit” 49 year old with another 17+ years of paying taxes to go yet, so where do the NHS’s priorities lie, but I won’t. If that old person was a grandparent of mine I would want them to receive the best of appropriate treatment too.

It’s just that I also want it for myself.

Maybe now is the right time to downsize after all. Let’s see what Skye brings in a couple of week’s time.

Off to see my consultant tomorrow

2010-08-17T19:38:00.000+01:00

Having had a few weeks off from going to the hospital, tomorrow sees me back there for a follow-up with the haematologist.

I am hoping that he can confirm whether the maintenance is available to me, but we will see.

I have another CT scan to look forward to next month, and I'm surprised that he didn't want to see these scans before seeing me again, but I'm sure he knows what he's doing.

At Leica in London

2010-08-03T23:47:00.001+01:00

Had a very good lunchtime today with David Bell and Jenny Hodge from Leica UK and Dr Eric So of Kings College London, who accepted the "cheque" on behalf of AICR, the charity that we have been supporting. Bill Palmer, also of the Leica USer Forum was there too.

Thanks again to Leica for all their support - we have raised over £10,000 for the charity, much more than we ever thought possible.

This is me, David, Eric and Bill Palmer at Leica in London this lunchtime.

Yes, my diet starts tomorrow...

Cheque handover to AICR is on Tuesday

2010-07-31T13:47:00.000+01:00

Regular readers will know that as part of their support for the Leica User Forum Charity Book, via their Twitter account, Leica generously offered to give €3,000 to the charity.

The handing over of the cheque by Leica UK MD, David Bell, takes place in the flagship London store on Tuesday, so I am taking the day off to go down and watch. It's going to be a very good afternoon :-) Through the efforts of everyone involved, we have raised over £10,000 for AICR, which I reckon is pretty good.

We are already thinking about ideas for the next charity book, which we will do next year when this one has died down completely. We will try and get that one finished for Christmas 2011.

All encouraging stuff.

The Venice Menu

2010-07-31T13:42:00.004+01:00

Well, I have made contact with the restaurant (Sorry if you're reading this Andrea, but we needed to crack on, so Google had to do - thanks for the offer of assistance anyway - the cheque's in the post! ;-) )

The restaurant that I had in mind can accommodate us all for the 16th October and they have kindly sent through two sample menus for us. The one with the better choice, to my mind anyway, is this one, the €28 menu.

One thing that I did find a little odd was that they seem to be expecting ALL of us to choose exactly the same thing from the menu. In their words "il menù gentilmente deve essere scelto uguale per tutto il gruppo (please choose one of the alternatives for the whole group)"

I have asked one of our party, who speaks Italian, to assist me in persuading them that if we advise them of the numbers for each dish, before the end of September, then that ought to be OK. I can't see too much of a problem with that, to be honest.

So, that's another thing (nearly) sorted :-)

Primo piatto:

gnocchi alla rucola (gnocchi with rocket salad and creame sauce
pasta alla carbonara (pasta with beaten eggs, bacon and cream
lasagne di ricotta e spinaci (lasagne with ricotta and spinach)
risotto con salsiccia e porcini (risotto with sausage and mushroom)

Secondo piatto:

fegato alla veneziana (calf’s liver with onions)
ossobuco alla cacciatora (veal shank with mushrooms
petto di pollo alla rucola (breast of chicken with rocket sauce)
spezzatino di manzo (beef stew)

Contorno:

contorno del giorno (vegetables of the day)

Dessert:

dessert

Acqua:

½ litro

Il vino non è compreso: ¼ vino: + 2.50 (the wine is not included)

I finished the last of my drugs this morning.

2010-07-28T13:10:00.002+01:00

Today would have been a day in the chair, as it’s Wednesday on a week 3, but of course, I don’t have to do that any more. The first week 3 Wednesday since early February that I haven’t had to. I miss it in an odd way. It was actually quite good to be forced to sit and not do anything for a whole day, despite having to be plumbed in.

Now, of course, it’s back to work full time again, without having a few days to recuperate every three weeks. Better that than being ill, though.

Now it’s time to start thinking about what to do with the rest of my life. I need to have some serious thinking done by Christmas, I reckon. Maybe two weeks on Skye will be an ideal opportunity, who knows. Much depends on many things, though, especially the economy and how bad things are going to get. We still have a mortgage to pay, after all.

It must just be the 50th Birthday thing coming up next year that’s got me thinking like this. I wasn’t like this 10 years ago, but then we still had two children at home and you can’t afford to start thinking like this when you just have to get on and do stuff. Now, maybe, I can.

However, the big question must be “What do you want to do? What would you change in your life if you could? How would your life be better if you did change it?”

That’s three questions. Let’s tackle the first one first and come back to the other two if they don’t get answered by the answer of the first…

Venice 2010

2010-07-25T21:24:00.002+01:00

Just starting to try to organise a dinner for 30 people (maybe more) in Venice in October, preferably for €30 per head (or less)

Going to be interesting :-)

So. Another birthday has been and gone

2010-07-22T20:37:00.003+01:00

Big one next year, so had to make the most of a little one this time round.

"I've never been to Birmingham"

"Erm... fancy going tomorrow, on my birthday?"

"OK"

Went to Gas Street Basin, the heart of the Birmingham Canal Navigations and a place where I'd spent the night on a narrow boat listening to ghost stories when I was about 14. It's changed a bit since then. The ghosts have gone and urban re-generation has arrived...

I don't know if you can read it on this size image, but it's good to see that "Legs 11", a lap-dancing bar with "the best showgirls in town" is located in the white gabled building towards the right of the shot. Gas Street hasn't lost all of its charm :-)

Brindley Place, next door, is a great example of what can be done with an inner city run-down area. But, it's still Birmingham. Frankly, my least favourite city in the country. You can't even get a proper cup of coffee round there on a Saturday morning. Still, been there, done that, no need to go back again.

Then we went on to Bournville to have a wander round the Cadbury village. Very interesting it was too, especially since we were there at noon, when the carillon started to play. On making enquiries at the visitor centre, we were soon on our way up the bell tower to see Trevor Workman giving the wooden pegs some serious stick. His photo is "photo of the week", and can be found on my website if you're reading this when that accolade has passed on to another photo. A fantastic skill, and definitely well worth a visit if you are in that area on a Saturday morning.

After a spot of lunch there, we ended up at the lavender farm at Snowshill, near Broadway once again. It was absolutely packed with japanese tourists this time round, but I gave the Hasselblad a walk, and we will see how they turn out one day. It's a lovely spot there, I have to say.

Then, back home and a supper at the Marsh Cat.

Not a bad birthday at all.

And in the new car as well :-)

Now, we can start planning new year's jaunt in earnest. It's going to be good.

Might as well blow my own trumpet - no one else will :-)

2010-07-12T19:06:00.003+01:00

Article about me on the Leica website.

Andy Barton: Silver Linings in the Clouds

So, that's very exciting :-)

That's finally over then

2010-07-11T18:33:00.002+01:00

No, not the World Cup - that's not over until later this evening. I want Spain to win, with the winning goal scored by Fernando Torres - if only because it might push his price up by £10m over the summer when he leaves Liverpool...

My 8 sessions in the electric chair came to an end this week. It will be strange not having that as part of my routine, going forward. Those three weekly visits came round very quickly - even just taking the daily tablet and watching them going down in the box showed the passage of time between one session and the next. No more Prednisolone for a few years - that's something to write home about.

Had a good chat with the haematologist on Wednesday. He wants me to have another CT scan in a week or so, so that he can see exactly what's left and what stage the disease is now that we have done this treatment. Notwithstanding what the radiologist said last time, I can still feel something in the groinal node where I first felt the problem back in May last year and I will discuss this with the haematologist when I go for the consultation post CT in August. I have to say that I will be pretty pissed off if this hasn't made the difference that I was hoping a couple of weeks ago. He also "sort of" back-tracked a bit on the Rituximab maintenance going forward over the next two years. It sounds like he is going to have to pull some strings as there is now some question as to whether they can count the radiotherapy that I had last year a "first treatment", or whether I am officially now in my "first" remission, rather than second. There is evidence that the maintenance is effective during first remission, but some question as to whether it is an approved treatment under the NHS. If it isn't, then I don't know what the options are - I doubt whether BUPA will pay for it. Will have to wait and see.

Other stuff feels better though. I even had a reasonable night's sleep last night, but I was completely bushed on Saturday afternoon, and absolutely needed the two hours sneaky shut-eye that I took.

My birthday is next weekend and I think that I can look forward to that, and beyond, with a bit more confidence than I did last year, when I was just opening this particular chapter of my life. While I don't think I will ever be able to close the chapter, I do think that a couple of pages have been turned, which is good.

So, now we're looking forward to the rest of the summer back in the office full time again (provided it's not as hot an humid as it has been the last week). We have Skye to look forward to in September (must get some filters sorted out for the Hasselblad...) and then Venice for a few days in the middle of October.

For my 50th next year, we have decided to take a fortnight's drive round Europe and have started the planning already. We are going to try to find interesting b&bs to stay in - if we can find places like that we found in Normandy last month, I will be more than satisfied. I have to say that, judging by the books that we have been browsing these past few evenings, there are some great places to stay, at very reasonable prices, in France and Italy. The German book is coming this week, so then we can start to plan in earnest. My friend Ravi has offered us a room for the night in Switzerland if we can organise it, so that's one night sorted!

Itinerary likely to be along the lines of Millau/Portofino/Italian Lakes/Switzerland/Black Forest/Rhine/Moselle/Champagne/Home. Should be OK :-)

"Accidentally" bought a new car on Thursday. We only called into the show room for a look and a test drive, but ended up buying a new Golf. We were in there nearly 4 hours all told - and I think I suffered for it over the weekend. Got a very good deal on one, I have to say, so I'm pretty pleased with that. Should be able to collect it on Wednesday, when I have to go to Stratford-on-Avon, which will be a nice run out for it.

More excellent news...

2010-06-29T12:44:00.005+01:00

There has been some more excellent news this week too.

I had an appointment with the Consultant Oncologist who was in charge of my radiotherapy treatment last autumn. This was a routine follow-up appointment just to check on progress etc, but he is also part of a clinical team with my Haematologist, so has the fuller picture of what’s been happening over the last 6 or 7 months.

He gave me the usual prod and poke around the lymph sites in my neck, armpits and groin and I am pleased to say that he couldn’t find any swollen nodes at all. This means that the treatment is working. Which is, as I say, excellent news :-)

"I never want to see you again", he said, in the nicest possible way. To be honest, I never want to see him, either, but I am glad I met him.

Unfortunately, it’s not possible to feel the nodes in the abdomen area, so I may need to have a further CT scan after next week’s treatment to check on what’s been going on there. Furthermore, this doesn’t mean that I am cured.

What it does mean though is that, subject to attending for the maintenance treatment over the next two years, I can look forward to maybe 7 years before I need to have something similar.

I am quite pleased. Not that I ever doubted that this would work, of course.

Now, I’m going to have to think of something else to write about – I’ve enjoyed doing this blog over the last year or so – it’s good to write things down and very interesting (to me at least) to go back and read posts from a while ago. As I have said before, it seems a lot longer than it really has been – so much has happened really and it’s easy to forget what you’ve been through.

Oh, and England were woeful in the World Cup. Why am I not surprised?

Some excellent news!

2010-06-29T12:29:00.004+01:00

A press release from Leica Camera was issued today:

Fundraising on Twitter for Leica enthusiasts’ charity initiative

Starting on June 30, 2010, Leica Camera AG will donate .50 Euro to the UK based Association for International Cancer Research (AICR) for every new follower to Leica’s Twitter account. Leica will donate an extra 1,000 Euros to AICR upon reaching 10,000 followers by July 9,2010.

The charity project for the benefit of international cancer research is part of an initiative that was launched by Leica enthusiast photographers who met on the independent International Leica User Forum site . Cornerstone of the project is the Leica User Forum Charity Book 2010, which is available through the online publishing company Blurb. The book is 140 pages long and offers a broad variety of images made by 101 Leica Forum members. A significant donation from the participating photographers as well as 6 Euros of the 95 Euros sales price will benefit the AICR. More than 9,000 Euros have already been raised.

Leica Forum member Bill Palmer, who came up with the photo book idea, said: “We simply wanted to showcase the talent of the photographers on the forum, whilst simultaneously raising money for a good cause. The response was overwhelming, both in the number and quality of images submitted from contributors worldwide.”

Norman Barrett, AICR’s Chief Executive said: “This impressive work of photo aficionados will provide essential income to help us help scientists across the globe in their efforts to understand and answer some of the most complicated questions in their field.”

Leica Camera Chief Executive Rudolf Spiller also commented: “I am delighted that we can contribute to an initiative that perfectly illustrates the spirit of the Leica user community. The project combines social responsibility, creative excellence and dedication to Leica cameras and lenses. Our customers are the best!”

Potatoes

2010-06-21T17:06:00.000+01:00

The crop from our first potato pot.

Should be good eating later :-)

Back from Normandy

2010-06-20T17:43:00.004+01:00

We were _supposed_ to be going to Oxford last weekend for a couple of days. We'd booked into the Malmaison on a very good deal for Sunday and Monday night and had intended to leave the dog with my folks in Maidenhead. Well, the second part of that plan worked out.

A week before we left we were talking about what to do for my 50th Birthday next year and got down to two choices. 1. New York for a few days or, 2. A drive round Europe to take in the Italian Lakes and the Millau Bridge (see blog post from last year about "Bucket List"). On one Thursday evening, Ann suggested that we could go to Millau _that_ weekend, i.e. in the morning. (It's only 900 miles from where we live...)

But, that got me thinking on the way to work the next morning, and so the Mal was duly cancelled and the ferry and a hotel/b&b in Normandy booked. We had been let down by Expedia, as it turned out. The place I had booked on the Friday lunchtime had become full by the time I got home, but they were very good, and found us a fabulous b&b at Chateau Flottemanville nearby. €80 per room, including breakfast - and it was superb. Here's a photo of the front on the Chateau, which has been in the family, thick and thin, for around 700 years. Our room was in an annexe over to the left, but a very short walk into the main house for breakfast. Very quiet, very comfortable, very reasonable. Will definitely go back next time we want to visit Normandy.

We'd never been here properly before. I visited with friends from school while on a tour of France about 30 years ago, but we didn't do the beaches (only Bayeaux, which is about 10 miles from the coast - stupid boys!), and this time we went with the intention of seeing all the D-Day beaches.

These are really moving. Omaha Beach, with the huge American Cemetery on the cliff above, and especially Pegasus Bridge, where the British Paratroopers first landed.

Highly recommended to anyone who hasn't been.

On the Monday, we toured the north and west coasts of the Cherbourg peninsular, which is both very beautiful and interesting, even the nuclear reprocessing plant which seems to be about 2x the size of Sellafield. We did find (following a tip in one of the guides) a fabulous small restaurant called Le Moulin a Vent right on the north coast, about half an hour west of Cherbourg, where the €23 set menu was fantastic. Excellent value for money, even with the poor £/€ exchange rate.

Got back home on Tuesday night, ready for another session in the chair on Wednesday.

There is now a large light at the end of the tunnel, with the final session (before maintenance) coming up in 2 week's time now. It's actually going to be quite odd not having this series of events to "look forward to", and having my life back as my own again. On the other hand, subject to the sleep deprivation and other chemically induced issues, it will also be strange going back to work "full time". I know what I'd rather be doing though...

Started looking round for a new car today. BMW and Mercedes were interested in selling me a car. Audi weren't even bothered whether they spoke with me or not. Thos first impressions make all the difference. guys... Mine has now done 76,500 miles, in the two years I have had it. It will be interesting to see what MB come up with.

The Leica Book has now sold around 130 copies and there should be some very exciting news to report about next time (which will not be as far away as this time was ;-) )

So, things are looking up for the Summer.

The Leica User Forum Charity Book is now available for purchase

2010-06-03T07:28:00.003+01:00

For every book sold, £5 goes to the AICR charity, to add to the £7,200 we have already raised for them.

This has been a great project and a very worthwhile cause.

Warm glows all round :-)

The Leica User Forum Charity Book 2010 |

The proof copy of the Leica User Forum Charity Book has arrived

2010-05-29T15:33:00.001+01:00

And pretty good it looks too :-)

There are a few typos that can be corrected over the weekend and then we will be ready to tell everyone about it.

Have to say that we have been having second thoughts about launch parties. It's actually pretty difficult to find suitable venues, particularly at a suitable price, so we may just have to launch "on line". I think that a final decision on this will be made over the next week. It's a shame, but there are some things that need more time and effort than any of us can afford to donate at the moment. However, we do have one of the two paper copies in existence going to the Forum Meeting at Zingst in Germany next week, so a lot of people will be able to see this proof copy there.

We will also make sure that we tout the other copy around anyone and everyone we can, including the dealers and Leica in Mayfair etc.

Session 6 went pretty much as normal - it's just a routine now. The hospital did think I was coming in on the Friday, not the Wednesday, but we sorted that. I need to phone them up on Tuesday and make sure that Session 7 is on the correct day too. Still tired and awake at the same time, but it's more manageable now. I have been doing the Piriton and Nytol trick again, and that seems to work if you wash it down with a couple of Plymouths...

I met up with Roy yesterday lunchtime and took a few environmental portraits of him in his study. One of them is the POTW on the right. What a nice guy, and we were discussing a collaboration project combining photography and his watercolours (which are superb, btw). Let's see how that can develop over the coming months. t would be great to work with him.

Meeting up with some of the guys at a Steam Rally near Bolton tomorrow if the weather improves. I will probably take the Leica out for a run. At least it's stopped raining now - absolutely piddling down this morning. So much so, that little Pips wouldn't go outside for a wee until she was thrown out and the door locked behind her... Been out for a walk now, so she's happier.

Having fun with the Hasselblad

2010-05-15T15:41:00.000+01:00

It's like having your eyes opened after along sleep. I am really enjoying using this camera and amazed at the results that I am getting. The Picture of the Week was taken on the way back from Stratford on Avon on Wednesday and is fantastic when viewed at a large size. (even if I do say so myself!)

I have also found a shop in Manchester that will process 120 colour negative roll film in an hour, so I might experiment with some after all. I want to get used to some different films before going to Skye in September, so will buy some slide film too. Can't wait!

Finally, we are nearly there with the Leica User Forum Charity Book. We have bought two copies of the final draft, in hardback, so that we can properly see what people will be getting and can adjust if necessary. The next thing is then to organise launch parties in London, Manchester, Germany and hopefully in the US, probably New York. Much depends upon if we can get someone over there to help, but we are working on that.

It should be a really good evening if we can get it right. We are probably talking about mid July, but it all depends on getting the right venue. Organising drinks and a DVD of the shots is the easy part.

Watch this space!

At the Lymphoma Association AGM

2010-05-09T17:13:00.003+01:00

Had a very interesting day at the Lymphoma Association in Reading, yesterday. Learned some things about new treatments coming through that I may ge able to benefit from at sometime in the future, including stem cell treatment from siblings. So long as it doesnt turn you into an Arsenal or Spurs fan, I'm up for it :-)

Had a very nice meal in Maidenhead last night with Mum & Dad, Kevin & Jan. It was Kevin's 40th Birthday yesterday and I hadn't seen him for ages. Noisy place though, right on Maidenhead bridge, next to where the rowing club used to be. Kept thinking of Ted Harris climbing out of one R.C. window and into another, over the river water, one evening for a dare...

Been in London today and visited the National Portrait Gallery to see an Irving Penn exhibition. Very good it was too. Pity the weather's been so dull. I would have wandered about taking some shots, but nothing very inspirational to be had under such grey skies.

Now knackered and on the train home. The post-P syndrome is really going to hit tomorrow, I can feel it. I think I'll have to go for the Piriton, Nytol and G&T solution ;-)

8 sessions it is then...

2010-05-06T15:29:00.000+01:00

As I thought, having discussed things with my haematologist yesterday, I am in the chair for eight sessions. This means that I now have three more to go and will be finished at the beginning of July.

Some good news is that he will be putting me on maintenance Rituximab. This has been proven to extend the remission period by up to 32 months (not 31 or 33..) over and above the typical 4 or 5 years that this course of treatment should give me. That means that with a bit of luck it could be 7 1/2 years before I need the nasty stuff. So, that IS good.

I forgot to take the anti-sickness pill last night and I can confirm that they work. Woke up feeling a bit nauseous this morning, but back to the usual space-cadet hyper state now until Monday.

The other news is that I bought a Hasselblad last week. I really wish I'd bought one years ago. I really feel at home with it, and working with the larger negatives is a real eye-opener. Using a slow film like Pan F, with a fine grain developer like FX39, the photographs are amazing. I will put some on my website soon, and there's a link to one as this week's "Photo".

On Saturday I am going to the Lymphoma Organisation annual conference at Reading University and will be coming back on Sunday. I will take the cameras with me and see what I can find on the way home. And, I'm really looking forward to taking it to Skye come September.

First Anniversary of my new status today

2010-05-03T07:34:00.000+01:00

Feels like a lot, lot longer than that. So much has happened.

More later.

Hassle

2010-04-29T13:40:00.000+01:00

Or rather, Hasselblad.

Photography definitely isn't going to be boring over the summer. :-)

Why photography is boring. Maybe.

2010-04-26T20:44:00.004+01:00

About time I did something like this.

We took the dog for a walk on New Brighton beach last night, just as the sun was going down. It wasn't exactly setting, but it was on its way. As some of you will know this is a favourite place to let the dog have a run around on the sand, and it's been the subject of far too many of my photographs over recent years. But, sometimes, you get a good one, such as the one kindly chosen by Kate Day at The Telegraph to be included in this year's charity calendar :-)

Last night, there was almost a queue of photogs out there and their very presence made me question what I was doing there, why, my equipment, everything.

So, what was I doing there? Well, apart from walking the dog, which I could do in the village, without having to get in the car and drive 7 or 8 miles, I went there to photograph the lighthouse. But as soon as I saw the others there, I didn't really want to. They were all standing or crouching within 20 feet of each other. They all had their Canon 450Ds or their Nikon D60s. They all had those backpacks that only digital SLR users carry, so that, for a walk on the beach they have every lens they own on their back.

They all had a small, zipped case. Yes, out came the ND soft grad filters. Out came the 81 or 85 warm up filters. Out came the Jessops silver tripods. It was all very depressing and all very predictable.

So, what on earth has this to do with me, you may (or may not) ask? Nothing.

Except that I just didn't want to be part of that crowd. Ann reminded me of the time (before HER time!) when I used to be a member of a camera club back in Maidenhead and we'd go out in a coach to Longleat, or Greenwich or somewhere similar. We'd descend, en masse, on a location, just as these people on the beach were doing. What's the difference? The difference is that I don't do that any more.

OK, so some of us get together every quarter and wander the streets of some Northern city and take a few photographs, before retiring to a pub to spend twice as long talking BS about cameras and having some lunch. Is that the same? Probably, but it doesn't feel like it.

I had the Nikon with me, with the 28 Elmarit-R. Why didn't I have the Lee filters and the tripod? Why wasn't I queuing to get into the spot that everyone else was at? Because it's boring. Digital SLRs are boring. People who want to be Joe Cornish are... well. They will never be Joe Cornish, and good job too. The world only needs one Joe Cornish. But his photographs? Well.

Don't get me wrong, they are beautiful photographs, but there seems to be a definite "formula" involved. Slide in the 0.9 soft ND grad. Add another 81 filter, just over the top 1/3 and at an angle of 22 degrees. All that stuff.

It must be me. I must be missing something, because, if one reads photography magazines or looks at the sort of stuff that sells by the bucket load, this is the sort of thing that people want. Just not me.

But, what DO I want? What do I want out of my photography moving forward?

Firstly, and I have said this in the past, but not done anything about it, I need a project. A serious, year long, photography project. I need to get myself organised and get down to it, and stop just taking snaps of anything that I fancy.

Secondly, I need to stop flitting between colour and black and white. Decide what I want to concentrate on, and stick to it.

Black and white.

Thirdly, I need to decide whether I am going to stick with "35mm" photography, or move into something else. HUGE investment down that road though. Best to stick with what I have.

Fourthly, am I going to save up for an M9/M10, or stick with what I have? Certainly, the M8 was not for me for a hundred and one reasons, but the M9 might be more attractive. But, I already have a full frame digital camera in the D700, which with the Leica glass gives me the best of both worlds. Do I need to spend another £5,000 on an M9? Probably not.

See. Mr Decisive strikes again.

If you have got this far, thanks for reading. I do need to get my head around why I do what I do, and what I can do to do it better, and with more satisfaction.

One thing's for sure. I won't be going to Perch Rock at sunset again in a hurry. But here's one I made earlier (last night, at around sunset, in fact)

That's that done

2010-04-21T13:17:00.001+01:00

Took ages this morning. Not only do you have to drink the litre of dye, which takes 45 minutes to get through the system and into the parts that other lemon flavoured drinks can't reach, but they keep you for a good hour afterwards now, just in case you have a reaction to the dye or the IV marker that they put into you on the table. So, that's basically a whole morning gone.

It was, however, interesting to see the other people there waiting to have the scans done. There was one lady of 94 who also had to drink a litre of the dye. "What? You want me to drink all of that?!" She seemed to be coping with it OK when I left her, though, so good for her. It's also interesting that little old ladies of 94 in wheelchairs are still considered suitable candidates for radio- or chemo-therapy. 10 years ago, I am sure she wouldn't have been. One could have a debate about the ethics of radical treatment in one of such years, but it's probably best to leave that to others.

Coincidentally, it would have been my Grandmother's 100th Birthday today, so she would have been only 6 years older than the lady in front of me. Grandma died of lung cancer in 1974 - who knows where she would have been if she hadn't smoked all her life and had been offered the opportunities that the lady today was offered?

Anyway, in two week's time, I will know whether June will be wiped out as well as the Spring. I have to say that I am looking forward to getting through this stage now, and, hopefully, to not having to worry too much about it for a few years. While it's never going to go away, at least there may be a period when there isn't "something else to look forward to" by way of radiotherapy, chemotherapy, or whatever.

Saw a vapour trail for the first time in a week just now. It's been very pleasant having clear blue skies without them, I have to say and I am sure that people who live on flight-paths of busy airports have really noticed the difference. I hope that they have been making hay while the sun has been shining, because they are unlikely to have the opportunity again. There goes a plane over head now, even as I type. The real world returns.

CT scan tomorrow. Very tired today.

2010-04-20T13:12:00.006+01:00

Doesn't get any easier. The second week of the three (if you count the treatment week as week one) is the worst. The crutch of the Prednisolone is no longer there, so the tiredness induced by the treatment is all that you have left. Not sleeping very well last night hasn't helped. Next week will be better.

My CT scan is first thing in the morning, so it will be good to get that done and then see what the results are in two week's time. Not expecting any miracles, though, but at least I will know where I stand shortly.

On a lighter note, my canvas arrived from Germany yesterday and it looks great hung on the newly decorated wall in the bedroom , even if I do say so myself. The Hadrian's Wall print has gone on the landing and also looks great. I will definitely buy more prints from them in the future.

I think I might get an early dart today and see if I can't grab an hour or so at the end of the afternoon...

Just a word of thanks

2010-04-16T08:26:00.003+01:00

Once again, I would like to thank the many people who have offered me words of encouragement and support through this time, both on here, via emails and in PMs on the Leica Forum. People I have known a long time and those whom I have never met. I have even had some prayers said for me!

It really does make a difference, and I am very grateful to you all.

Thank you.

The Grand National

2010-04-15T22:32:00.011+01:00

Went to the Grand National for the first time on Saturday (no good going on Sunday, because it's not run then... ha ha!). We bought tickets to the "Steeplechase" enclosure, for which you can read "cheap". I thought that a hundred and fifty quid to see the finish line was a bit steep, especially when there are three of you going. Still, I wasn't expecting what we actually got.

If you buy a place at the Steeplechase, you only get to see one race all afternoon. That'll be the Grand National. In all, you see about 20 seconds of horse racing. They come past fences 1 and 2 twice in the afternoon. All the other races on the card are run on the short track - cheap seaters only get to see the odd jockey cap bobbing around on the other side of the car park.

Oh well. The sun was out and between us we managed to come home with more money than we started, and we had a good laugh at girls in platforms and high heels trying to walk down the grassy bank. Would have been bloody miserable if it had been raining though.

Won't go to that enclosure again as it really only gives you a pretty poor experience for the whole afternoon. Much better to save up and go to one of the "proper" enclosures or stands, such as Tattershalls. At least you'd see some horse racing :-)

News from the electric chair

2010-04-14T11:41:00.001+01:00

Currently plumbed into the Cyclophosphamide with its large yellow "cytotoxic" label on the bottom of the bag. So long as it's toxifying what it's supposed to, I'm happy. The treatment is getting faster each time and I should be fully basted by 2 o'clock.

My blood counts are holding up and my liver and kidney functions are normal. Amazing :-)

I'm back in MY chair today and things on the ward are much quieter. Party-girl from last time isn't here and half the chairs are empty, which is unusual in my experience.

Appointment made to see the haematologist again in 3 weeks time, after the scan which will tell us how things are progressing. Still expecting 8 sessions so if it's only 6 that will be a bonus.

Will post my experiences at The National tomorrow.

Almost back to a "Week 3" again

2010-04-09T19:22:00.002+01:00

More of the same really, this time round. Basically, you have one rough week, one not-so-rough week, then a "normal" week, then you start over again. And it's surprising how quickly the Week 3's come round.

Despite the weather over the Easter weekend last week, we had a very nice day out in North Yorkshire on Sunday. The photograph of Swaledale was taken then. It's a great part of the country and very quiet in comparison with many other places, especially the Lakes. Until you get to Tan Hill Inn, that is. Last weekend, it was full of bikers on old bikes and we didn't get to go in. Never mind - always next time.

Off to the Grand National tomorrow. I tried to go last year, but hadn't bought a ticket in advance. The queue to buy a ticket on the day was about half a mile long and six people wide, so I turned round and came home again. This year, better prepared, we have bought tickets already. Having been to a corporate box on Ladies' Day (the Friday) before, going to the cheap seats in the middle of the course will a completely different experience. Going to take just the M7 and probably the 50mm and keep it simple.

So, next stop, back to being plumbed in again on Wednesday, followed by another CT scan on the following Wednesday, which will tell me whether I will need the 6 or 8 doses. We'll see.

Session three over

2010-03-27T08:19:00.003Z

Very disappointed when I got to the hospital on Wednesday to find that someone else was sitting in MY chair... :-) One can get very possessive about these things and it just wasn't right sitting on the other side of the room. Especially when the young woman in the chair next to mine ended up having 6 visitors and a party... Anyway...

Not been quite so bad this time. Although I only got a couple of hours sleep on Wednesday night, and dozed through Thursday night, last night (Friday) wasn't so bad. Two cups of Red Bush tea, a Nytol and a hay-fever tablet seem to have done the trick.

Went to see the GP yesterday afternoon, as he asked me when I was first diagnosed to keep him up to date with what's going on. Otherwise, all he knows is when he gets copied into odd letters from various consultants. As I expected, I know more about this and the treatment, than he does, but that's OK. He has to know a bit about everything, then pass it up to the specialists. He did agree, though, that something like this needs to be seen as a long term problem, as opposed to an acute issue, and we discussed the fact that there are all sorts of treatments coming through that should be ready for me in 5 or 10 years time if I need them. He said that HIV is now basically just a long term condition and no longer progresses to AIDS, provided you live in the West and keep taking your tablets, and to a certain extent, this is where I am going. Keep taking the tablets.

I updated the website yesterday, so if you want to see what's been done, just go to http://www.andybarton.com and see for yourself. I have had a bit of a cull and a complete overhaul using iWeb. I would be pleased to know what you think.

Back in "the chair" again this week...

2010-03-22T12:37:00.003Z

Ding ding, Round 3.

My next round of treatment (Nr 3 of probably 8) is this Wednesday. If there are eight sessions, then I finish them all in early July. Which is a long time away.

I am determined that, this time, the steroids are not going to get the better of me. I wasn't expecting that reaction last time round, so I am prepared for it this week. More walks with the dog. That's the answer.

But, keeping positive... We have booked a fortnight in Skye in September which is going to be terrific. We haven't had more than a week on one of the Scottish Islands before and we've never been to Skye, so this is going to be very interesting.

We also have a few days in Venice sorted for the competition, staying in an apartment with a couple of very good friends, so it will be great to see them again too. And, I might see if we can get a few days in June if the quack only gives me 6 sessions instead of the 8. Flying will be out of the question, but maybe a couple of days in Bristol (we keep talking about it) or down on the South Coast could be a good short break.

Might even get the tent out...

Back on an even keel now

2010-03-10T09:11:00.004Z

Finally slept OK on Sunday night, but felt like I had jetlag on Monday. Since I had a box of paperwork with me, I decided to work from home.

Had a very nice lunch at Il Forno with Ed, then promptly fell asleep when I got home. I must have needed it. I just hope that things don't progress along these lines for the rest if the Spring, as it ends up taking out one week in three if you're not careful. But, as my HR Manager reminded me yesterday, I need to look after Number One this year

So, that's why I got up at 05:15 this morning to get a train to London to meet with British Telecom to tell them how crap their support services are :-) When I get back to NW, we are showing a judging panel around one of my projects, as it's on the shortlist for an award. Fingers crossed...

She did tell me to take as much time off as I need over the coming months, though, so I think I will take her up on that offer.

Other news? I was lucky enough to gave two shots chosen for the Leica Forum Book. The one I thought would get in didn't, and one I was less sure of did. Happy with that of course. Now we are collecting all of the high res copies of the shots and then can put the book together. Going to be a big job

No news from my new friend who wanted to use my photograph for nothing, unsurprisingly.

Day 24

2010-03-06T18:07:00.000Z

Very, very tired and have been all day.

Goodness only knows what I'll be like on Monday.

Second session

2010-03-05T13:42:00.007Z

OK, so I had the second session on Wednesday. While it didn't take quite so long as the first, I was still there from 08:30 until 16:30 and I suspect that it will be an all day session from now until the end. The length of time is due to them having to make up the Rituximab individually, due to the cost, so that doesn't arrive until after lunch.

Feeling much more tired this time round. I couldn't get to sleep last night until about 04:00 and the alarm went off at 6, so I can feel a snooze coming on this afternoon. Even the Red Bush tea wasn't sufficient to knock me out :-) I am convinced that it's the steroid that's doing it. I seem to be having a different reaction to it this time round. I am feeling much more tense than I did three weeks ago.

Maybe this interesting email I received from someone yesterday, has something to do with it:

My name is xxxxxx xxxxx and I am writing from xxxxx, xxxxx. We have plasma screens in our office that we use as an internal notice board and I am wondering if you would mind if we used one of your photos on these screens as we don't have any images of the waterfront and a colleague of mine has recommended your work. The image we would like to use is: http://www.andybarton.com/3gsm.jpg

Unfortunately we do not have a budget to offer you anything for this as it is for internal use only but would love to use your work as it would be a great way to localise what we have on there and we really like your composition and love the mood of the image.

I look forward to your reply

The photograph is the "Photograph of the week" on the right, btw.

Whilst I am flattered that such a large company should want to use some of my work in their UL Head Office, I am extremely disappointed that they should think that they could use it for nothing. I wrote back and told him that I would be very happy to negotiate a price for him to use this should he so wish, but am not willing to part with it for nothing. Damned cheek.

I will post here should I ever receive a reply from them, which I doubt.

So, I think I will have to take it easy this weekend.

Day 17

2010-02-27T12:06:00.001Z

Haven't lost any hair yet.

So that's a bonus.

:-)

Ticking along fine at the moment

2010-02-24T10:40:00.004Z

White blood cells are down, as are platelets and haemoglobin. But, all to be expected and nothing too concerning at the moment and I told the specialist nurse that I was surprised at how not-unwell I feel. Let's hope it's like this all the way through, and that the treatment is actually working without me feeling it.

However, she has advised me that aeroplanes are far too filthy for me to be allowed anywhere near one.

So, plans for the gathering of the Leica clan in Zingst may now have to involve a long drive, a ferry or two and an iPod full of Radiohead, Pink Floyd and Beethoven.

Will get there if I can...

(Actually, said nurse advised against going "anywhere foreign" at all, as "you wouldn't want to get poorly abroad". I think I know what she meant :-) )

This is a real shame, as I missed last year's extravaganza through being in hospital. This cancer really does mess up your life, even if you're not "ill" with it, just by restricting you from what you are "allowed" to do. Will have to wait until the 4th treatment and the CT scan that follows, before making a decision.

Fingers crossed.

I got some shots down on the marsh at the end of the road at the weekend, with my newly converted 250 f4 lens on the Nikon. There's one as this week's photograph, but it really does show that there is no substitute for length. Really "need" a 500mm or even longer to make the best of the opportunity there.

Two steps forward, one step back

2010-02-15T12:08:00.002Z

OK, so we are now in week two of this process and things are slightly different.

Until yesterday, I was taking the Prednisolone, the "P" part of the R-CVP. This is a steroid, and the dosage given is pretty high. Today is the first day of not taking it, and I can feel the difference. I am now tired (it's lunchtime), whereas last week, it wasn't until later in the afternoon that the tiredness started to kick in. I need to watch this, as I am back at work tomorrow, properly. Maybe I will need to to half days or similar for a while.

Apart from that, things seem to be going OK.

I was hoping that the Ilford print of the Hadrian's Wall photo might have arrived today, but no luck, I'm afraid. It wil be interesting to see how they print that, from a digital file, onto real photographic paper.

So far so good

2010-02-11T14:43:00.004Z

Well, yesterday was an experience. But nothing like as bad or traumatic as I was anticipating - I was actually surprised.

Arrived at the hospital at 8:15 and waiting for the department to open at 8:40. Had bloods taken (they check haemoglobin, white cell count and platelets to check that your blood is in good enough condition for you to receive the treatment)

Then, after seeing my consultant and signing the consent form, had a good meeting with a specialist nurse, who explained what each of the 4 parts to the cocktail were, and what they did and what the side-effects are, they put me on a saline drip for an hour or two. This is to make sure that you are well hydrated before they hit you with the nasty stuff. It turns out the drugs are prepared specially for each patient on the day. The dosage is generally patient-specific, excepting for the Rituximab, which is given the same to everyone. But, that too is made up specially. It costs £2,000 for a 250ml bag, and "We don't like to put it down the sink if you don't arrive". Which is fair enough, when it's my tax that pays for it.

The first two bags of drugs, the Cyclophosphamide and Vincristine go through reasonably quickly, but the Rituximab is the one to which people get an allergic reaction, so they start that off slowly and gradually build up the through-put rate. They give you anti-histamines and paracetomol at then start of the procedure, to reduce the likelihood of reaction, but I was very fortunate. Apart from my hands going cold for about 10 minutes, I suffered no ill effects.

In fact the whole day went very smoothly. I was there until an hour or so after closing time, because of the time it took to administer the last of the drugs, but next time, things will be quicker.

Toady, I am at home, as I will be for the rest of the week. I'm not feeling too bad, it has to be said, but I didn't sleep very well last night and am pretty tired, so I just have to take things easy. However, In readiness for my hair falling out (which it most likely will), I have been to the barber and had a "Nr 3" all over. "Are you sure?" he said...

I have to go back to the clinic there on both of the following Wednesdays between now and my next course. They need to check the blood again, as the treatment basically wrecks the white cell count and haemoglobin levels. This will leave me vulnerable to infection, particularly at the end of next week, so on the assumption that I feel well enough to go back to work, I need to be very careful in meetings. If anyone has a cough or a cold, I will need to make my excuses and leave, as a chest infection could kill someone with such a reduced system.

In summary then, things could be a lot worse. The additional drugs that you have to take, to prevent the sickness and stop stomach upsets, seem to be working fine at the moment. Fingers crossed, things continue as they are.

Just a brief note to say "Thanks"

2010-02-09T19:43:00.002Z

I have had so many messages of support, from all over the World, that I would like to say "Thank you" to everyone. I really do appreciate all the support everyone has offered me.

Tomorrow's an important day, and I will update the blog as soon as I can.

Until then..

:-)

It starts next week

2010-02-04T19:15:00.005Z

Much as I expected, the results of the CT scan have meant a course of chemotherapy being recommended and booked. We start on Wednesday 10th February.

If I am lucky, I will need only six treatments, one every three weeks. If I am unlucky, I will need eight. So, this is it until at least the end of May, if not the beginning of July.

The cocktail of drugs that I am to be given is known as R-CVP and consists of Rituximab, Cyclophosphamide, Vincristine and Prednisolone. The first three are given intravenously, while the last is a steroid that is taken orally, over 5 days, starting on the day of the iv drugs. If you want to know more about these, there is a very good leaflet available here: http://tinyurl.com/ya8oo24 and Macmillan also have something very useful: http://tinyurl.com/y9mh3e7

Helpfully, these leaflets also list the side effects that may or may not come. Anything from a dry mouth and mouth ulcers, to a trigger for diabetes, or even other cancers. I could be manic or depressed, get constipation or bladder irritation. I could get pins and needles or low blood pressure, or... So, it's all exciting stuff.

The first course is, apparently, the worst. Once they have seen how you react to the above, they can tailor the remaining sessions to a certain extent. So, if you do get nausea, they can include an anti-nausea drug the next time. It takes all day to administer the drugs in the hospital, and the first session may involve an over-night stay too.

I have been advised that I will need to take at least the remainder of the week off work and maybe the next week too. However, I expect that for the following sessions, just the three days will be necessary. At least I hope so. That would just mean that I would lose three days every three weeks, which isn't so bad. But we will see. No doubt I will post here what happens...

If this treatment works, I have been advised that this should knock the disease back for the next 5 years or so, at which time another round of treatment, with more powerful drugs will be on the cards. Eventually, there could be bone marrow transplantation to look forward to and there is some good work being done with stem cells at the moment, which may have come good by the time I need it. I have decided to pass on the mistletoe for now...

One of my friends has suggested that I keep a photographic record of what happens while I am in hospital. I'm only going to be in there for a relatively short time, but I will look at making a project out of the next few months for sure.

So. Let's get on with it. Plenty of people have been down this road before and come out the other end smiling. There's no reason why I shouldn't.

:-)

PS - Top Tip for a really excellent film to watch - "Moon".

Big week, next week...

2010-01-29T23:50:00.006Z

Probably/possibly THE big week, so far...

So far, we've had the diagnosis, the kick back from the infection, the CT and PET scans, the bone marrow biopsy, the radiology. This week, we have the potential to move up a gear.

On Tuesday, after I see "my man", I may move into a six month period I could have only imagined, only a year ago. Or, I may not. As I sit here now, that's the difficult part. Not knowing.

So far, everything that's happened to me on this journey has been pretty benign. Bad choice of word, maybe, but to be honest, it hasn't been so bad, as far as it goes. It's all been pretty immediate and "dealable-with". "This is what you need to do, and you need to do it tomorrow morning" kind of thing. No time to reflect and think.

Next week may bring in a new dawn. I really don't fancy six months of feeling crap. Or at least one week REALLY crap, one week crap, and one week slightly crap - repeat 6 or 8 times. That's from now until August. We are talking end of the football season, Wimbledon and the World Cup. And still not finished.

I'm not scared about anything. I'm disappointed. I don't fear where this is going, but I'm not happy that this is going somewhere where I don't want it to go, and there's nothing I can do about it. I am stoic. And patient. I am doing what I am told, by people who know what they're doing. At least I trust them to know what they are doing. I know that I have lots to give, and receive, and I know that these next few weeks, months and years will be difficult and rewarding, challenging and fulfilling. I have lots I want to do. And I have lots of family and friends who love and care about me and offer encouragement and support, and I am truly grateful for every bit of it.

But next week, will be a big week.

Update while waiting for my brake fluid to be changed

2010-01-27T08:03:00.003Z

I am sitting in my car dealer with an hour to kill, so it's time for an update

Since last time, I have had another CT scan and am now waiting for the result to come through. I see the haematologist next Tuesday, so we will know then what's in store. I am not looking forward to it, to be honest, but I do need to know. It's like having your life permanently on hold, waiting for the next thing to happen. Planning is very difficult, not knowing what you will need to do and having the condition always there, like the dead child in the "don't speed advert" on the TV is just something you have to live with. My guess is that it's 50:50 re treatment next week.

On a more positive note, I booked the flights for Venice in October last week, andnow need to find a hotel. The San Cassiano, where we stayed two years ago, isn't taking bookings for Oct yet, but I'd like to have somewhere booked and be able to look forward to it. Also looking at maybe a cottage on Islay in the fist two weeks of September, which will be beyond any treatment that I might or might not need to have.

Had an interesting day on Saturday at the gathering in Trafalgar Square to protest about S44. I think a point was made, but know thst it won't make any difference at all. Such is life.

More next week when I've seen my man.

Oh, yes, the Leica Forum Book entries close on Sunday. The total raised so far is now well over £6,000, which is a fantastic sum. Must post a reminder to everyone to get their shots in before Sunday night.

Belated Happy New Year!

2010-01-12T12:09:00.005Z

New Year long gone now, of course, as was our week in Scotland.

Unfortunately, with the weather we have been having all over the country, the week there wasn't quite what we were anticipating. Indeed, it weas actually only a day there, and even then, we couldn't get off the A-roads. BMWs really are rubbish when it comes to driving on compacted snow and ice. So, we returned on the Wednesday instead of the Saturday, taking advantage of a break in the snowy weather. Took no photographs to speak of. However, we had a very nice stay in The George in Inveraray. Excellent food to be had there along with very comfortable rooms.

My Dad has had to have his shoulder joint replaced, but is back out of hospital now, and seems to be on the mend, which is excellent news.

The Leica book has now raised about £5,400 so far. The date for submissions closes at the end of January, so it will be interesting to get on with the judging next month. There are around 400 shots to assess, so far, so that won't be a 5 minute task.

And, yes, I am Mr April for Telegraph readers this year. Still waiting to hear about the prize though...

Now, I just have the CT scan tomorrow morning and the aftermath of that to look forward to.

More later...

Christmas has been and gone

2009-12-28T12:49:00.005Z

as it usually does.

This year, it left my Dad in hospital with a dislocated shoulder and a triple fracture of the humerous. Going down to see him tomorrow, provided the weather keeps off. This has been the worst December for weather that I can remember for a long time - the snow is hanging around in some parts too (couldn't get off the drive on Christmas Eve for the iced up road. Torville and Dean went past...)

Off to Scotland next week for a few days. We have booked into the Mal at Leith and then on to Inverary. Haven't been up there this year, due to "unforeseen circumstances", and it will be good to see the place in the winter.

Yesterday, we took a day out to The Lakes. The weather was glorious on the M6, but by the time we got to Keswick, the cloud had descended and it was all a bit grey. Found out that the Dog and Gun on the High Street is very dog friendly though, so we had a lunch in there.

Looking forward to another CT scan in January (13th), followed by a visit to the haematologist on 2nd February. There was an interesting piece about a woman in Scotland with NHL, who has been "cured" through the use of mistletoe. Sounds like complete BS to me, but worth investigating further.

And that's it for this year - in a place I wasn't expecting to be this time last year, that's for sure.

And, I might have to think about changing the title of the blog... this is a long running saga.

And so, this is Christmas (nearly)

2009-12-20T09:24:00.006Z

Another Sunday, another update.

Saw my haematologist on Monday this week, and he was pleased with the way that the radiology has worked. So that's a good sign, because so am I.

He wants to do another CT scan in January, as I haven't had one since first being diagnosed in May. This will, of course, let him see what progression, if any, the cancer has made in the meantime. Depending upon what the results show (they will be available in February), he will decide what's next for me.

We discussed options with regards to chemotherapy, and he's minded to use R-CVP if anything. This is less toxic than RCHOP, which has been the standard treatment for some time, and means that the RCHOP can held "held back for later". Any of these treatments are one shot affairs, once you have had RCHOP, you can't have it again. The R-CVP is also less likely to make you lose your hair, too, not that that is of great concern ;-)

The Telegraph Charity Calendar is now on sale -

http://blogs.telegraph.co.uk/culture/kateday/100005630/photo-competition-calendar-for-telegraph-christmas-appeal-on-sale-now/

I think that I am Mr April, but will have to wait and see.

Finally for now, the Leica Forum Charity Book has so far raised £3,360, which is an excellent result, with more to come, hopefully. If you're interested, you can check on progress here:

http://www.justgiving.com/L-Camera-Forum-Book

Good news

2009-12-11T20:38:00.002Z

One of my shots has been chosen to be included within the Daily Telegraph Charity Calendar for 2010. As part of the deal, I get to spend some time in a workshop with a pro photographer, and get a tour round the Daily Telegraph's news room. Both of which should be interesting :-)

Talking of charities, the Leica Forum Book is starting to develop some good contributions, and as of now, we are up to £2,225 in donations, with 3 weeks to go before closing time. Plus, the £5 mark ups on each book sold. This is a very satisfying project, and I am looking forward to seeing the photo entries when the time comes.

Rebecca's home this weekend, so we can do a bit of shopping in Liverpool tomorrow. It's a shame she has to go back for a few days to finish term, but she'll be home for Christmas next weekend, I expect.

So, three bits of good news for the price of one :-)

Not the final visit...

2009-12-07T12:40:00.002Z

Wants to see me in a further three months (and, by the sounds of it, on a rolling 3 month schedule after that) and he's still talking about a course of chemo. But, not just a 6 treatment course, the full 8. So that's a 6 month course from start to finish, as the treatment is done every three weeks.

From what I understand, you feel really bad in week 1, bad in week 2, not so bad in week 3, then on week 4, it's time for treatment again, so back to week 1.

Let's see what the haematologist says next week.

Keeping positive*! :-)

*Hard work sometimes...

The final visit

2009-12-07T10:43:00.005Z

Well, hopefully the final visit to this particular specialist, at least for the foreseeable future.

Just about to go to the Clinical Oncologist for a wrap-up consultation following the radiotherapy last month. He is the one that has been suggesting chemotherapy as a follow up, while his colleague, whom I see next week, is less keen on that.

Still, should be able to report some progress later.

Looking forwards to the dinner with the local Lymphoma Support Group tonight, with the office Christmas do on Thursday. A whirlwind of engagements...

More later