Lewis, Harris and a general catchup

Since last time, which is six weeks after all, we have been fortunate enough to visit a really fabulous island at the edge of Europe. Lewis, and its co-joined twin Harris, form the largest of the Outer Hebrides at the very North West of Scotland.

A three day journey there, via Bankfoot near Perth and Ullapool ended with the 2 3/4 hour ferry crossing to Stornoway, the capital of the islands and the only sizeable town out there. We were lucky that this little corner of the continent often has completely different weather from the rest of the country - this time it worked in our favour, as after a few days of somewhat mixed weather, it became settled and sunny, with high broken cloud. With the sun setting at around 23:00 and rising at 04:00, it never really gets dark at this time of year, so there is no excuse for not getting out and about.

We were staying in a very pleasant cottage owned by a very friendly couple in a sub-hamlet about 25 minutes from Stornoway, so it was very quiet but not so remote as to make life too complicated. Nearby, at Calanais, were a group of 5,000 year old standing stones which were an excellent place from which to watch the sunset.

With golden eagles flying above the cottage and seals in The Minch, between the island and the mainland, we only lacked for otters this time.

I bought myself a new Harris Tweed jacket while there. We found an excellent shop, The Harris Tweed Company in Grosebay,  selling quality jackets, unlike those found in chain stores on the mainland. There are some truly awful quality jackets about these days, so one has to be careful. It is most definitely worth buying from a shop where the provenance of the tweed and tailoring are known. Mine is a deep green tweed. I also discovered via the Harris Tweed Authority, that my Grandfather's jacket must have been made prior to 1958, as it doesn't have the reference number to connect it back to a particular weaver. Older than I thought, and older than me, it's just starting to wear at the cuffs and inexplicably, it doesn't fit me quite as well as when I inherited it 25 years ago. Oh well...

The tweed for my new one was woven by Donald John MacKay MBE in Luskentyre, not far from Gosebay. It's quite an interesting concept to know who actually wove the cloth for the jacket you are wearing. He certainly has a magnificent view to ponder over as he makes the cloth

All in all, despite being a long way away, Harris and Lewis are fascinating beautiful places and I can see us returning in the future.

Got an interesting couple of months coming up now. After my birthday this week (thanks!) I have a trip to Photokina in Köln to look forward to in September, with a very busy time at the office in the meantime. Then it's Copenhagen in October, then it's the wedding, then it's Christmas and another year over.

My last maintenance is now less than two weeks away. I've written in the past about what this might mean, so I won't repeat myself more than I usually do, but it's going to be interesting. We were discussing this with the Lymphoma Association Group on Wednesday.

Now, what can I do to avoid the Olympics..?

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?

"Anniversary" weekend

Notwithstanding the previous post, it's hard to believe that it's only three years ago this weekend that I first discovered I had a problem that turned out to be the lymphoma. It feels like much longer than that, so much has happened in the meantime. Trouble is that when first diagnosed, the consultant gives you a "worst case" prognosis, and that sits at the back of your mind. Three years in, typically, I should be looking at maybe another five years, tops. That's not long - and definitely not long enough. But, since I am very young to have got this, I am not typical. Which is good. But also means that it's a bit of an unknown. Which isn't.

As I said, I do feel very lucky that I have been able to receive some of the best treatment available. The team at The Countess of Chester are really excellent. Hardworking, dedicated, friendly, caring. What more could you want. From the first time I went into the unit, I knew that they would look after me to the very best of their ability.

I have a loving family and very supportive friends and colleagues - extremely important when dealing with something like this. I am a lucky man. I am sure I've said this before, but it's worth saying again - "Thank you" to everyone.

Could be a lot worse though. A former colleague of mine died of cancer last weekend and we are going to her funeral on Tuesday. Some of us are very much unlucky - cancer really is a bastard.

Time to stop feeling sorry for myself. Lots to do this year, including the trip to Scotland at the end of next month, Copenhagen and the wedding. All of which are going to be fantastic.

Before all that is the Lymphoma Association AGM, being held in a couple of week's time in Manchester. I am thinking about maybe volunteering as a "buddy" - but need to talk it through with some people first.

The Leica User Book 2012 is still selling - well, it will always be "still selling", as Blurb don't stop selling them until you say so - what I mean is that people are still buying them. Another 24 sold last month, meaning another £240 will be donated to AICR next week when the payment clears in my account. There is also some top-up money to come from the 2010 book, which is great. We are at around about £20k in donations in total now. What a great effort. Sales will inevitably slow down now, but it has definitely been a worthwhile exercise. I will have to think about another book of my own.

Finally, I have been invited to make a presentation to the Shirley Photographic Society in September. "An Evening with Andy Barton", they have called it. I am convinced that they have the wrong Andy Barton, but it does sound as if I am the star turn that night. I am slowly putting together a print collection and will sort out some slides too. Will need to assemble a programme otherwise it might end up as "Five Minutes with Andy Barton". Preparation needs to start now...

Coming to the end of my third year of this

I suppose that I ought to think about a celebration of some sort, because I am actually a very lucky man.

I will have to ponder until the Bank Holiday next week...

The 30 foot high girl

Last weekend there was a 30 foot high girl wandering the streets of Liverpool.

She was part of an outdoor performance event known as "Sea Odyssey", in the city for the Titanic Centenary commemorations. I managed to see her on the Saturday morning, as she went from the Albert Dock around the streets and past the Town Hall, and was fortunate enough to get a really good spot. She paused to kneel in front of the statue of Queen Victoria, right in front of where I was standing. She stayed for about 20 minutes, allowing children to climb onto her forearms.

She was accompanied by her dog and later in the day met up with her uncle, who was, according to the story, trying to find her to deliver a letter from a relative lost on the Titanic. Each "puppet" - the word seems inadequate somehow - was operated by a couple of dozen "Lilliputians" and the whole thing was just brilliant.

Liverpool really do know how to do this kind of thing so well. They have no problem closing the streets of the city centre for hours at a time and anything up to a million people attend.

Great for the city and the visitors.

New light through old windows

The weather has been so dull over the weekend, that I have been going through old photographs on the computer. I was actually looking for some Lake District photos to put into this year's calendar (April? Don't ask...) and came across a few old files that I had dismissed before.

It is surprising what you pass over as being "not worth it" when you look back after a couple of years.

The first one was taken on a walk up St Sunday Crag about four years ago. We'd been up there one weekend in February 2008 and sat on top of Catseye Cam overlooking Helvellyn and Red Tarn. The weather was glorious, especially for February and when it got to Tuesday of the following week and it hadn't broken, on a whim I took the Wednesday off and for the only time ever, went up a mountain on my own.

I walked from Glenridding car park, over St Sunday Crag and back - a decent walk - but must have seen no more than a dozen people all day. If I'd fallen and broken an ankle, I'd have been in big trouble, but I didn't, so I wasn't. The weather was fantastic, as you can see from this panorama of Patterdale and Ullswater, taken on the way up.

This shot was printed to a canvas soon after I took it and is currently hanging on the wall.

However, it was the following shot that I'd passed over at the time and it's taken me over 4 years to spot some potential. I really like the way that the distant mountains recede in the mist and the lone figure, walking towards me. I have no idea why I didn't see this one before.

Still, I am glad I did. Now I will need to print that one too...

The second shot that passed me by, but more recently, is this one. 

Again, not sure why I didn't bother with it before, but I like it in a simple, pastoral sort of way. I tried this one in black and white too, but much preferred the colour version - I think it almost has a slide-like quality to the colours, I can't quite put my finger on it.

This one will make it to the calendar.

A great place to live

We were walking the dog this morning along The Parade, a street which used to be a quayside  of a small fishing port, but is now just a road alongside a huge expanse of marshland. The village is Parkgate, on The Wirral, in Cheshire

In the 1700s, it was the main embarkation point for people wanting to travel from England to Dublin. Trans-Irish Sea ships would moor in the main cut of the river, and small lighters would be rowed to the quayside that you can see here. Handel did his final tweaks to "The Messiah" here, prior to its debut in Dublin and Emma Hamilton, Lord Nelson's mistress, used to take the waters here.

In the 1730s, part of the river was canalised, which diverted the main flow to the other side of the estuary, leading to a gradual silting up on the English side. This, together with the opening up of Liverpool as a commercial dock and the pushing through of the turnpike road to Holyhead, meant that the village's trade with Ireland came to an end.

Just before the Second World War, grass was planted further upstream to stabilise a firing range - within 30 odd years it had taken over the whole of the estuary. Today, for the most part, the estuary is an odd mixture of marsh grass and inlets - "the remains" as my young daughter called them - trapped ponds being "the remains" of the River Dee. The marsh is now a nature reserve, administered by the RSPB and the local authority.

A couple of times a year, with the spring tides, the water is high enough to reach the quayside once again. I have known this place 20 years, and I have seen it breach the wall when the tide is exceptionally high. Today's is only 10m, but there was an 11m tide a few years ago. If the wind blows up the estuary, that can add another 1m to the level.

The real beauty of living here is that from our house, in 5 minutes, we can be watching any number of wading birds on the marsh. Anything from various gulls, oystercatchers, herons, egrets, a couple of spoonbills are now resident too. We get short-eared owls patrolling the marsh of an evening and a hen harrier is a regular visitor.

What a privilege.

Guest Blogger at Leica Camera

Leica's continuing support for the Leica Forum Charity Book means that I was invited to contribute a Guest Posting on their corporate blog. There were several entries there a couple of years ago, and this one is a more personal follow-up to those, based around this year's book.

You can read the blog entry here

Announcing the Leica User Forum Book 2012

There is also a very interesting one a few further down about Harris Tweed, which I will make a note to read more thoroughly before our trip there in June.

New York, Treatment 10 and Charitable Works

In one respect, no news is good news when it comes to this treatment regime. It will be three years since I was diagnosed, next month and it's over two years since I started my treatment.

It's all very much a matter of routine, now, of course, but it still takes about 3 1/2 hours start to finish to deliver one 250ml bag of saline and Rituximab. There is a limit to how fast they can let it run into the vein and even though I am well used to it, I still need to have the paracetamol, Piriton and steroid pre-treatment too.

Each time I get the treatment, the haematologist examines the lymph nodes for any signs of recurrence and, fortunately, hasn't found any to date. Only two more sessions to go now, then they will leave me alone until I get symptomatic again, which, if I'm lucky, will be around 3 or maybe 4 years away. He wants to see me every three months, going forward. Let's just hope that he can get some assistance with his surgeries, as the last time I had to see him outside of a treatment session, he was an hour and a half behind with his patients. More and more people are benefiting from the haematology services, and Rituximab is being used for conditions other than lymphoma, too, so poor old Ward 60 is very busy indeed.

My specialist nurse, the one who got married on the day that we flew to NY, seems to have had a fantastic wedding and honeymoon if her photographs are anything to go by. If she told me once, she told me six times that she can't believe that she is married. That'll wear off!

So, we have been back from NY for about three weeks now. We had a terrific, if tiring time there, having seen most of the sights and walked most of Manhattan over the five days we were there. It was great to meet "the cousins" for the first time. As I posted below, what a really nice bunch of people, with whom we had a great day on Ellis Island.

What an interesting place that is - echoes of the flip-side of Auschwitz, in a way. Places where the intended purposes are polar opposites, of course, but both needing highly efficient systems for processing thousands of people per day. I am glad we went and learned more about what people had to endure on their way to the United States. Our little delay in Immigration was quickly put into perspective.

Highlights of NY apart from meeting the family? Meeting folks from the Leica forum for the first time and joining them up the Empire State Building as the sun went down and the lights of Manhattan came on. The whole city seems to come into focus as dusk settles. Whereas during the day, you are overwhelmed by the scale of all the buildings below you, stretching over the whole island, at dusk and as it gets dark, the lights in windows and cars seem to make the city get closer andy more defined. It was a terrific experience.

The museums are wonderful, of course, and we had a fantastic evening at Warhorse, just off Broadway. Incredible puppetry. The horses really were "alive", even if the Devonian accents left a lot to be desired! Didn't spoil the amazing theatre, though. Pity about the $50 for two glasses of wine...

So, now, it's back into the normal routine, and keeping an eye on the sales of the Leica User Forum Charity Book 2012. So far, we have sold 83 copies, raising £830 for AICR, on top of the £3,850 we have already raised this year. Great stuff.

Following on from this success, I fear that Ward 60 might need some help over the next couple of years to pay for another extension, so I will volunteer my services to the team there, should they need me. It's always good to pay something back if you can.

So, now it's Easter and my Mum's 75th birthday to look forward to, followed by two weeks doing nothing in Scotland in June. Brilliant!

The Leica Forum Book 2012, raising funds for AICR is now available

Via this link.

http://www.blurb.com/user/store/LUFBook2012