AirMiles and Avios

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

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

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

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

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

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

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

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

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

You don't know whether to laugh or cry.

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

BP and Magnum

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It never rains

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

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

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

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

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

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

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

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

Sicily, panna cotta and a confession.

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

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

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

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

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

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

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

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

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

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

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

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

Maidenhead. What happened?

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

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

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

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

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

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

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

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

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

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

 I know where I'd rather live.

Let the train take the strain

Never did like Jimmy Saville.

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

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

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

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

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

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

Oh well...

NICE

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

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

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

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

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

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

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

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

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

500px

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

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

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

50

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

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

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

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

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

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

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