A long, long time ago

I wrote the last entry here. And quite a lot has happened that I really should have written about before, but will now play catch-up.

Last time I was looking forward to Copenhagen, about which more later. I have also had the first of my 3-monthly arch-and-wait checkups. Finally, I got to see the results of the CT scan I had in August. As my haematologist had predicted, the CT scan showed no sign of enlarged lymph nodes, which proves that both the chemotherapy I had in 2010 and just as importantly, the maintenance therapy that finished in July have both done their job. This is excellent news and means that I can, with a bit of luck, look forward to two or three years of respite from the treatment. I just have the watch-and-wait to think about.

The bad news is that my "man" is emigrating to Australia. Since he was the first sensible consultant that I saw, back in 2009 and has been instrumental in my treatment plan ever since, I am a bit disappointed. Very selfish of me, of course, as he is going to take up a Head of Department job in a large city main hospital. And it's in Australia. Even BUPA aren't that generous. So, in the New Year I will have to find myself another consultant. I will have one more check-up with him at the end of January, so maybe he will have a plan of action then. He did say that the next time I needed treatment, he would refer me to the Christie in Manchester, under one of their professors, but whether that's necessary for check-ups, I doubt. I will have to do some digging around myself, I think.

Now, then, Copenhagen. Cue a song with "Wonderful" in the title...

It is a wonderful city. The hotel we stayed in, the Copenhagen Strand was clean, comfortable and very well located. A bit pricey though, especially since breakfast (which was very good) wasn't included in the rate for the room. We were close to Nyhavn, the real hub of the tourist area and the scene you imagine when thinking about Copenhagen, if that scene doesn't have a mermaid in it. In fact, it looks a lot like this.

The quayside is wall to wall bars and restaurants, with some sort of dodgy looking club thrown in the middle for good measure. There is another hotel right at the end of the row and plenty of ships and boats moored alongside, some of which appear to be actually working.

Kulturnatten was a bit of a let down, I have to say. The bits we saw were more like any Friday night in Liverpool, but I'm sure that if you are a native, or least a Danish-speaker, things might have been more interesting.

Apart from the weather, we did have a very good weekend, but boy, is it expensive there. It was rare to get a two course meal with a bottle of wine for under £100, but we did eat in some interesting places, including Cap Horn, one of the restaurants on the strip above. I braved a herring starter - and wish I hadn't - but the rest of the meal was very good indeed and the place has a terrific atmosphere. We walked past Noma, one of the world's top 5 restaurants, but unfortunately it was closed. Also fortunately, we hadn't booked 3 months in advance either, so that wasn't a problem...

Finally, the mermaid isn't worth the walk in pouring rain. She might be worth it on a sunny afternoon, though.

All in all, a good weekend, even if the One Challenge competition proved to live up to its name once again - winning in Berlin seems like a very long way off now...

And now, at last, it's wedding time. 10 days to go and we found out today that the bride-to-be was in hospital last week with pneumonia... What a great way to start your preparations! As far as I know, however, all that side of things is properly sorted out and all planned and ready to go; we will find out the truth this Sunday.

All suits and shoes and dresses and handbags are bought. I do need to organise a decent taxi to take us to and from the hotel, though - a job for Saturday morning, I think.

There, that's it since the end of September.

Shirley, Cologne, Seal and wedding preparations

The presentation to the Shirley Photographic Society went very well indeed. As I was driving down the M6 from Blackpool, I was thinking that it could go one of two ways - fortunately, it seems to have gone the right way.

They were generous hosts and a nice bunch of people and I spoke for nearly an hour and a half on a selection of my photographs. They were very complimentary during tea afterwards and they offered me a fee, which I asked to be sent to the Lymphoma Association on my behalf. I have no idea what the fee was, but it will have been gratefully received by the Association.

Unfortunately, the M6 was closed due to an accident in the Stafford area on the way home, so I had to double back and come the long way round via Telford and Wrexham. Still, it was a good evening.

I have also been to Germany this month to the Photokina photography fair. I was invited to attend the private Leica launch party as a guest of the owner of the Leica Forum and happily accepted. I used Eurostar and the DBahn train service to get to Cologne via Brussels with the view to taking in some of the scenery between the Channel and Cologne. Unfortunately, there isn't much to see as it is extremely flat, but the train service was very good and got me to the city at just the right time for the event.

A couple of new cameras were launched, to pretty much universal approval, especially the new "M" model, which looks particularly interesting and, for Leica, at a very good price. Saving up already...

The party was finished with a concert from Seal, a great friend of the Leica owner, Dr Kaufmann. Very good he was too.

The highlight of the evening, though, was an interview with Nick Ut, the photographer who took probably the most iconic photograph of the Vietnam War, that of Kim Phúc, the nine year old girl running naked from the napalm attack.

The rest of Photokina that I managed to see, was vast. It took around 20 minutes to walk from one end of the Halls to the other. Some are on two levels and every camera, film, lens and accessory company in the world seemed to be there, from the global giants such as Canon and Nikon, to small Chinese firms selling replacement lens hoods. No wonder that the hotels were all full and the city was buzzing.

The wedding is now only two months away, so this weekend, some serious shopping was necessary. Two decent pairs of shoes, two suits, two new shirts and a tie later, Ed and I are ready. The girls finished their shopping too, and that seemed to go pretty smoothly too, considering... That's good to have that out of the way, and, from our point of view, it doesn't leave much to be organised. Mustn't forget to sort out some taxis.

Now it's only three weeks until Copenhagen. I have downloaded some information about the Kulturnatten which is an annal event on the 12th October and, while I can't see myself dancing the night away until dawn, I can see a late night in store. It's going to be very interesting. I have wanted to visit the city for years, so this is the perfect reason to go. For the competition shots, I'm probably going to try out some of the high silver black and white film I picked up in Germany this week, but I must try some out first. Next weekend...

Health-wise, I am learning that "watch and wait" isn't so bad. This coming week is the week when I would have been going in for a top-up, so it's from next week that I am really exploring uncharted waters. I have the next check-up at the end of October, and I am sure that everything will be fine then.

I did think that I had had a night-sweat earlier in the week. I woke up convinced that it was happening, but I am pretty sure it was only a dream. Will have to watch for this though, as I suspect that my symptoms will be the same when they return.

That said, there's lots of good things to look forward to!

Buddies, Zevalin and 500s

Yet another May has come and gone and a catch-up is in order.

The annual Lymphoma Association Conference was held in Manchester on 16th. This is the third one that I have attended and as always they have proved very interesting. All day sessions, with extremely good presentations by some of the top lymphoma specialists in the country always give you something to think about.

Over lunch, I enquired about the "Buddy Scheme" that the charity run, whereby a member makes him or herself available to speak with other people who would like to talk over the condition with someone else who is suffering with it, and who has been through some of the same emotions or doubts that they are. Having now discussed it with the buddy co-ordinator, I will definitely put my name forward this week and see how we get on.

There are some very interesting new developments in the treatment field as always, and while they are still a long way from a cure for NHL, the management of the disease gets better every year.

My penultimate maintenance session was on Wednesday, with the last one at the end of July. By then, I will have been attending at the hospital either three weekly, or bi-monthly for two and a half years. Since coming off my "watch and wait" period, at the beginning of 2010, I have had pretty much constant regular support from the consultant and the specialist nurses there. What is going to be different and potentially more difficult, is going back onto the "watch and wait" regime in the autumn. Even when you know that this is the right and appropriate course of action, what it actually feels like is "inaction". You really want to feel that "something is being done". However, research shows that there is no benefit at all to either continuing with chemotherapy or indeed maintenance when the disease has settled down and there are no symptoms.

I will need to have a CT scan on completion of the maintenance (mid-August, probably), so that we have a new base-line against which I can be judged, and I will need to attend clinics every three months, so I am not entirely on my own (with regards to professional support), but it will certainly be a change to the routine.

As I have said before, typically, it should be around 3 years from now that I can expect to bumble along before the symptoms return and more chemo is needed. Who knows what the recommended treatment will be then. Zevalin appears to be gaining in "popularity" at the moment. It's a little bit like the Rituximab, in that it has a component that attached to the CD20 markers on the cancerous B-cells, but it then has a radioactive element that damages the DNA of the cell and kills them. The advantage of this kind of treatment is that it only targets the cancerous cells, as they are the only ones with the CD20 marker. On the other hand, it's powerful and dangerous stuff, with some interesting side effects. From the Zevalin website:


"The most common adverse reactions of ZEVALIN are: decreases in blood counts, tiredness, abdominal (stomach) pain, nausea (upset stomach), inflammation of the nose and upper throat, weakness, diarrhea, cough, and fever. Common adverse reactions (≥40%) in clinical trials were: low neutrophil count (a type of white blood cell), decrease in number of white blood cells, decrease in platelets, decrease in red blood cells or hemoglobin, infection, lack of body strength and energy, muscles and bones symptoms, and stomach and intestinal symptoms"

So, that's something to think about :-) But, let's face it, when you are dealing with anti-cancer drugs, none of them are benign and they all tell you that your life could be a misery for a while. Better that than the alternative, though. The CEO of the drug company that makes it said, only yesterday, at a conference in Chicago:


"There is no drug (approved) that is single-dose treatment for cancer," Shrotriya told IBD in an interview Thursday. "The new data from Europe shows that, in fact, Zevalin could be a single-dose treatment for follicular non-Hodgkins lymphoma, without the typical side effects of chemotherapy."

So, that's actually pretty encouraging, really. There are some clever people about, that's for sure.

We picked up the new Fiat 500  couple of weeks ago. The Twin-Air engine really is seriously good and the ride and handling have been greatly improved since the previous one. All in all a great little car.

My Golf has just gone through 70,000 miles today and it's not yet turned its second birthday...

Jubilee Weekend this weekend which is getting everyone very excited. Or not as the case may be, and I have to say that the Olympics really are starting to get on my nerves now. Only two more months to go and they'll be nearly over. Still, Mum's birthday dinner is also this weekend, so it will be good to have everyone together for the first time in ages.

And finally, it's only 3 weeks until it's annual leave time. 

But, let's not wish our lives away just yet. Eh?

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...