Category Archives: Uncategorized

Funeral for a Friend

Finally, after roughly 4 months, my friend who died back in September has had his funeral.

It is shocking that it has taken so long for this to be arranged, but maybe a sign of the times.

I received an email from his son, letting me know that the service, at an east London crematorium, would be only a few days later. Apparently, once the paperwork had all been corrected (can you believe that his death certificate was made out in the wrong name?), the family were given no choice about when and where the service would be held.

I caught the first train out of Manchester and found my way to the crematorium out past the Olympic stadium, arriving in good time for the service which was at 9:15. The crematorium  is actually in a beautiful setting in a large area of parkland and cemetery – as most of them are, to be fair. But as I passed through the Victorian gatehouse arch and headed to the chapel, it struck me how entirely appropriate it was for the service to be held in such an environment.

It was cold, only just above freezing, and there was a mist in the air. Everyone walking through the grounds was wrapped up in their hats and coats and gloves against the weather. This is how one imagines funerals to be. Maybe it’s different in warmer climes, but to me, this is how they always seem to be. Maybe I’ve only ever been to funerals in the winter, I don’t know. It is the most popular time of year to die, after all.

I thought that the weather and the whole situation was also appropriate for Alain. He was a huge fan of Ingmar Bergman films – all dark and black and white and Swedish 1950s and 60s. His avatar on Twitter was “Death” from Bergman’s “The Seventh Seal”, which is a cheery film*.

Given that they are inevitable, a funeral on a cold, damp, misty January just seemed completely right for him

There weren’t many people there, as I anticipated, but I did get to meet his son and his family. They were really lovely people and it’s a shame that we couldn’t have met in different circumstances. But life, and death, are not like that.

I am glad that I made the effort to attend. And I am glad to have known Alain, who turned out to be a lot older and a lot more German than I had thought!

 

* No it isn’t

And, yes, I do have Elton John playing in the background as I type this.

 

A link to Mesothelioma.net

Part of the point of this blog was to allow anyone, anywhere to find it and hopefully take some use from it.

One such person who has come across it is a chap in the US, by the name of Virgil. Initially, I thought that his short email asking for details of my blog was a scam, but as it turns out he wants to share a site dedicated to a support site in the US for sufferers of mesothelioma, a cancer caused by exposure to asbestos.

They appear to to very good work. As Virgil wrote to me

“As a result of their website I am now being treated at the National Cancer Institute and the patient advocates have even provided me with financial assistance so I could afford a place to live during my cancer treatments. If I had not reached out to this website I would likely be homeless and more importantly in hospice waiting to die. These people gave me my only chance at survival.

I noticed you posted a cancer-related link on your website. Perhaps some of your website visitors could use the help of Mesothelioma.net. The website is filled with information on mesothelioma treatments and doctors, asbestos trust funds for victims, and a lot more. They also sponsor The American Cancer Society, the MD Cancer Center, and the Make a Wish Foundation.”

I am happy to share this link with all who read this blog and wish Virgil well in his treatment.

Quick update as I sit in a Mercedes dealership having my car fixed. While on holiday. 

As I wait an hour to have my car made legal again (the windscreen washer system has completely failed), I thought I’d share some iPhone pics from the recent visit to Portugal. And Kent…

A proper post will come later if/when we can get home. 

To say that I am a little bit cross having to spend my holiday in a Mercedes dealer is putting it mildly… Have I ever said how much I hate this car?

I lost that friend

I visited the hospice and the staff there were really fantastic, but as feared, my friend had already died, last weekend.

He had no next of kin, so I’m going to try to see what I can do with regards to the arrangements. Can’t let the council deal with things on their own. It’s not for me to pay for his funeral, but I would hate to think that there was no one there who knew him.

Time for a drink.

On potentially losing a friend

The Internet is an amazing resource, and one that has become completely ingrained into our lives in such a short period of time. I cannot think of another technology that has become ubiquitous and matured in such a short time before. Maybe the wheel. The coming of the railways in Britain happened over a similar period of time, but didn’t affect individuals’ lives in quite the same way as the Internet has. Obviously this blog wouldn’t exist if it weren’t for the ‘net.

It is capable of remarkable things, of course, including introducing you to people who you couldn’t possibly ever have hoped to meet in a hundred lifetimes. The rise of social media, from what could now be described as “traditional” Internet forums to Twitter and Facebook and whatever this year’s latest model is, have meant that people can interact instantaneously with others all over the world. Whilst all new technologies such as this have their downsides, in general, I would think that the good is currently outweighing the bad for most people.

Over the years, on several (now defunct) Internet forums and via Twitter, I happened across a really interesting chap. He had a very good eye for a photograph and was a talented photographer himself. There wasn’t much he didn’t know about classic films, especially the really dark odd ones from sixties Sweden and, a man after my own heart, really appreciated the work of Stanley Kubrick. Despite not being British by birth, he was very keen on the UK leaving Europe and a big fan of Nigel Farage.

I met him a few times when I was in his town on business. We had coffee a couple of times and a lunch, and he was good company.

More recently, he has been pretty poorly, in and out of hospital for various treatments. Always praising the nursing and medical staff, he didn’t have much good to say about the NHS system itself, but they did seem to be getting a grip of some various problems that he had. Then, in the summer, he told me that he needed some radiotherapy for a cancer that he had in his abdomen. It was similar to what I was diagnosed with back in 2009, but he didn’t really go into specifics. I shared my experiences, good and bad, with him of course, and he seemed to be on the mend.

Then, about six weeks ago, he told me via a private message on Twitter, and without going into specifics, that he was going into a hospice. Now, this could have been just for some respite care and for a few days he was messaging to say that they were very good there, the staff were excellent and he even had a special bed that constantly moved you about to prevent pressure sores. He also mentioned that you could have a bottle of beer with your dinner if you wished. This pleased him.

As he was stuck in his room for the duration, he asked me whether I could buy him a £20 top-up for his phone, which I gladly did. “I will pay you next time I see you”, he said, which was fine by me.

Then, there were no messages. No Twitter posts, apart from the odd automated one that tells you how many new followers his account has. No response to texts on the phone. Nothing.

For several weeks.

He had told me the name of the hospice that he had been admitted to, so I called them to see if they could tell me anything.  They couldn’t even find me the right ward to speak to. I emailed them, with no response.

I am hoping that all this is just a case of a man too poorly to text, or Tweet, or who has run out of credit on his phone. And one who is suddenly going to reappear on Twitter and have a moan about Jeremy Corbyn. But, I have to confess that I fear the worst.

If that is the case, then I wish I had had the chance to say goodbye. But, that just isn’t possible, so I will have to be content to say here that I am glad to have known this man.

He is a good man. He will be missed.

It’s not dark yet, but it’s getting there… indeed it is

One day, we will all just fade away and stop blogging and Tweeting. Let’s hope that someone notices.

Building the wall

Last weekend, I built a dry stone wall. Not single handedly, but with a group of others at the National Stone Centre, near Matlock in Derbyshire. 

I booked the weekend as a “gift” from my company for having been there 10 years and it was a really good experience. There were eight of us on the course, which was run by a lady who is a professional and champion waller, having done this for 25 years while running a farm at the same time. She was an excellent and patient teacher and everyone on the course thoroughly enjoyed themselves. 

Ages ranged from mid fifties down to nine and there were four women and four men (including the nine year old), none of whom had any experience of walling. 

We spent all day Saturday and Sunday on the wall and by the time we had finished, we had 6m of wall, about 1m high. This one will never win any awards, but for first timers, with the teacher’s help, I don’t think that we did too badly.

It was hard work but, surprisingly, I didn’t suffer too much for my efforts on returning home. I am looking forward to putting some of these new-found skills into action next spring when I get round to sorting out the patio area outside the kitchen.

Highly recommended.





Orkney – come here if you can

For years we have been talking about coming to Orkney. I have posted here about other Scottish islands that have been our holiday destinations in the past, but this year we finally made the effort to drive up here. It’s a long way and took us the best part of three days, but the effort is rewarded by staying for a week on a beautiful and fascinating island.

It’s an hour and a half ferry ride from a small village of Scrabster, next to the larger town of Thurso on the north eastern coast of the Scottish mainland. The cottage that we are renting is in the west of the “Mainland” as the largest of the Orkney islands is known. It’s about 2 miles from the 5,000 year old Neolithic village of Skara Brae, of which, more later.

We have not been disappointed here. The cottage itself is a little bit stripped pine and flowery curtains, but it’s comfortable enough. Inevitably, we tend to spend far too much time exploring the island when we are on holiday so the accommodation itself is not a primary concern, provided it’s clean and comfortable enough. It’s the island and its attractions that drew us here.

Wherever you go, there is evidence of previous occupation by long lost tribes. A quick look on any part of the map will reveal burial chambers, ancient settlements, brochs and so on. There must have been thousands of people living here thousands of years ago and they have left behind a fabulous legacy.

Skara Brae is it the most famous of them. Having been warned not to go on Monday when I enquired about opening times on Sunday afternoon (Kirkwall, the city on Orkney, is the most popular cruise ship destination in the UK, apparently – and incredibly – and two large ships were in on Monday), we arrived later in the day on Tuesday and had the place almost to ourselves. Below is a photo of the biggest and most famous of the dozen buildings preserved by the sands. You can see box beds either side of a central fire, and a shelving arrangement adjacent where food would have been stored and prepared. The only part of the property missing is the roof, which would have been made of timber or whalebones, skins and turf, all long since rotten away.

The adjacent house has a vast collection of the artifacts found within the buildings. This place is almost like Pompeii, only without the bodies, and for somewhere that is older than the pyramids, and older than Stonehenge, it’s a must-see when up here.

Not far away from Skara Brae is the Ring of Brodgar, another stone circle that is older than Stonehenge. Again, we were fortunate, or careful, to miss the time when seven coach loads of cruise ship tourists all turn up at once and we were able to enjoy this fabulous place pretty much on our own.

Even when we were there for the actual summer solstice on Monday evening, there were no more than a dozen people there. Compare that to the scenes at the younger upstart on Salisbury plain…

It’s a beautiful spot.

Nearby, is an active archaeological site called the Ness of Brodgar, which is similar to Skara Brae, but larger. This isn’t open to the public yet as it’s an active dig during the summer, but it will be good to return some time and see how it differs.

The ring is beautiful during the daytime too.


At the north end of the island, is the Broch of Gurness, a slightly later farmstead in a fabulous coastal location. 


The whole place is full of amazing sights such as these. And we have been very lucky with the weather, too, only getting wet for the first time this afternoon. Which is pretty good for the north of Scotland, even at mid-summer.

Tomorrow, we have booked to see Maeshowe, which is  burial chamber near to the Ring. So, maybe I can share some of that later in the week. There isn’t much later though, as we have to set off home on Saturday morning. Back to work on Monday. I’m sure I have posted before about the benefits / disadvantages of taking more than a week off at a time, but if my work emails are anything to go by, more than a week this year would be a week too long. Oh well…

Friday, have decided to go to Hoy, a smaller of the islands, just south from here. I can see the mountains from this window. There are sea eagles nesting there for the first time since goodness only knows when. Hopefully, we will get to see them. Our success at seeing the bird life here is somewhat mixed, it has to be said. Puffins = 0. Hen harriers = 2

Oh, and we have had to light the fire tonight. It’s a bit chilly.

On seeing the Northern Lights for the first time

I am a lucky man. I’ve said this before, but as my life wends its way along its chosen path, it becomes more true day by day. 

I have a loving family, good friends, an interesting and worthwhile job. And, the evening we arrived in Tromsø, I saw the Northern Lights. 

Early evening, they were a faint but distinct vertical line. They stayed for around 10 minutes, then faded away, but Ann needed a lot of convincing that what we had seen really were the lights. I would have been happy with what we saw. 

A little later, another faint green line across the sky appeared. Again, she was not convinced. But I had taken some photographs and the green line was clear to see. For a second time, they faded and stopped, so we decided to return to the hotel for a cheeky glass of red. On the way, we met a German lady who was so excited at seeing them and, as we chatted with her, they came back. And how…

  
They swirled. They danced. The “curtains” were there. They stretched across the sky, from the hills to the East, to the horizon on the west. The only things missing, were colours other than green. Maybe tomorrow…

I lay on the ground on a snowy concrete groyne, using my small table top tripod (should have borrowed the carbon fibre Gitso!) and the lights put on a great show. I took some photos (will share later) and then just lay on the snowy ground watching. And laughing out loud. 

It was just fantastic. 

I know that millions of people have seen them. And millions more will see them tomorrow, or next week. But, this is definitely one of those “remember the first time” moments that I will never forget. 

Today, we hired a car from the airport and drove around some fjords. The car was supposed to be a Skoda Yeti, but, incredibly, the car hire company didn’t have one. Has anyone, ever, actually driven off in the actual hire car that they have reserved? I certainly haven’t… Anyway…

The small sample of fjords today certainly lived up to the anticipation. The weather improved during the morning and the scenery was just stunning. Later, at dusk, it turned foggy then snowy, but for the main part of the day it became clear and sunny. We drove quite a long way today, to make the best of the car hire but it was definitely worth it to see scenery like Scotland on steroids. 

   
  

  

  

  


As an aside, the car was a 4×4 Skoda Octavia, with studded winter tyres. It was a really good car for the conditions, which basically saw 1″ of sheet ice covered in powdered snow on 300km of roads. In fact, it was a really good car. Could never buy one, of course, because it’s not a BMW, but…
  
Oh, yes… Nine quid for a small glass of wine from a wine box, is really not on. Norway really is cripplingly expensive. Not sure if I can ever afford to return. 

Which will be a great shame as it has so much to offer. 

A fabulous weekend in Oslo and the aurora has been visible

It was a privilege to spend the weekend with our friends and their two boys in Oslo. 

They were very kind and generous hosts and we had a great couple of days seeing the sights of the city and discovering that we could count a Masterchef amongst our friends. We were treated to some fabulous Norwegian specialities, including dried and salted cod and moose as a main course last night. That’s not something that we eat every day! (And neither do they, to be fair 🙂 ) His cooking really is exceptional.

  
We had a great walk around the city, its parks and the castle on Saturday, with a lunch in a very nice cafe in the centre, before buying some oven gloves on the way home. Living the dream!

We also went past a Persian rug shop that is unfortunately closing down due to the rent being tripled at the end of the year. Having almost bought a rug at 50% off, plus tax free savings too on export, common sense prevailed and we will wait until we get home to measure up the space that the rug will need to occupy. I have the business card of the store manager in my wallet, so I can email them to see whether the rug we would have bought is still in the shop. I am sure we can work something out when we get back.

On Sunday, we went to various museums in the city, including the Viking ship museum where they have a beautiful ceremonial longboat from around 850AD on display, together with the queen’s funeral possessions that would have been on the ship. Absolutely superb carving both on the ship and in particular the funeral byre and other artefacts.

  
A trip to see KonTiki followed, bringing back memories of Blue Peter in the 1960s. Why they were telling the story then, I don’t know, but you have to say that Thor Heyerdahl did lead an amazing life, proving that it is possible to travel around the world on ancient craft made out of balsa wood or reeds and string.

Next door, is the Fram, the ship that Amundsen used to get to the South Pole before Scott, who obviously should have got there first! The ship is beautifuly preserved and well worth a visit.

Finally, we went to the Munch Museum, where there is an exhibition of Munch and Mapplethorpe self-portraits (plus some of Mapplethorpe’s other work). Some readers may know Mapplethorpe, and others not, but the exhibition didn’t hold back on some of his more “challenging” work, not suitable for children. The really interesting aspect, and entirely down to the skill of the curator, was the remarkable similarity between some of the work of the two artists. Whether Mapplethorpe, a photographer from the late 20C had studied Munch’s work from the early part of the century I will have to find out, but the arrangement of the paintings and photographs was extremely well done. It was enjoyable visit and I would recommend it to anyone visiting Oslo in the next month or so.

Munch’s most famous work, “The Scream” is in the National Gallery in the city centre, so that will have to wait until another visit to this interesting city.

So now, at 35,000 feet above the clouds and the snowy landscape, we are off to Tromso. There was a solar storm last night, with the aurora being visible in the UK as far south as Oxfordshire, apparently, which is just typical! However, the forecast is pretty good for where we are going, so let’s hope that our luck holds out over the next few days.

  

NCRI Consumer Group and more good news.

At Christmas, the Lymphoma Association asked whether any of their consumer group members would also be willing to volunteer to become lay members of the National Cancer Research Institute Consumer Group. With the DIY works to the bungalow coming to an end in a few weeks time, I decided that I could afford the time to volunteer my services, if they would have me. Organisations like to have non-medical members to read and evaluate papers and reports and contribute to the process from a the viewpoint of someone who consumes cancer services, rather than provides them. Obviously I am rather hoping that I never have to be a consumer again, but I am happy to share my experiences and thoughts on whatever comes along.

A couple of weeks ago, I attended an interview in London, and I am very pleased to say that I am one of the new recruits. Unfortunately, they are having a training session while we are in Norway, but I will attend the next one when they run it again in September and I am looking forward to the first meeting proper just before Easter.

In a strange way, it is a really exciting time to be a cancer sufferer if you are lucky enough to be in remission from lymphoma. I know that my experience is not necessarily typical and that the picture is not rosy for everyone with cancer – far from it. But there is yet another article on the news today about how immunotherapy can be used to make the body deal with cancerous cells itself. I posted a few months ago about how chemotherapy may become a tending of the past in only a few years and today’s news appears to be a big step along that way. There was also news about switching on T-cells ( part of the lymph system and similar to but different from the B-cells where my cancer sits ) earlier this week. These cells can be tricked into fighting cancer cells elsewhere in the body, potentially avoiding the need for chemo or radiotherapy. 

It really does feel like we might be getting somewhere with this and I am hoping that my membership of the NCRI panel can help in a small way to moving this forward. 

Maybe it’s time to think about another cancer research charity book? Because, one day, we will get there. 

To the frozen north. 

Friday morning, I’m sitting in seat 12B on flight BA 174 to Oslo, and, with a bit of luck and literally a fair wind, I am in the process of ticking off another Bucket List entry.

We are spending the weekend with our good friends who live in the city and then, on Monday, heading above the Arctic Circle to Tromso. Having checked the weather forecast at least twice daily for the past week, we have a reasonable chance of seeing the Northern Lights on our overnight excursion on Wednesday, if not before. Provided that the solar activity is sufficient, too, of course. I have several fingers and toes crossed – you need a bit of luck if you are just visiting the north for only a few days. We will see.

Preparation for this trip has been somewhat different from previous March weeks. Regular readers over the last nearly seven years will have seen that we try to take a week off in March. We have been lucky enough to be able to go to Venice, New York and San Francisco, to name a few, all of which have been interesting and great experiences. But all of them have a been to fairly temperate climes. In San Francisco last year we were in shirt sleeves and in Venice a few years ago, all we needed were a jacket or light jumper. This year will be different. 

I tried to liken it to a trip to the moon this morning over breakfast, but was told not to be ridiculous. Ok, perhaps that is putting it a bit strongly, but we have had to prepare somewhat differently this time. Whereas it would usually just be a case of taking normal clothes and coats,etc, this time, we have had to buy very flattering thermal underwear, merino wool fleeces and socks and padded jackets. We haven’t gone overboard on the jackets, but they’re not something that we would normally have bought. Really cold weather gear can be hired in the town itself quite reasonably, but even in Oslo, it is likely to be below freezing and snowing when we get there.

As well as the overnight minibus dash across Scandinavia, I have also hired a car for a day, so that we can explore some of the coastline and fjords and, with a bit more luck, find some photographs. I am looking for a couple to hang in the living room when it’s finished, so a fjord and an aurora one could make for a nice pair.

So, this year’s March break is going to be a bit of an adventure into the unknown. I will post some iPhone pics along the way if there’s anything to share.

Oh, and not to look forward to the end of the holiday before it’s even started, on the Saturday we get back, we can fire up our new wood burning stove for the first time and feel like proper Scaninavians 🙂 

My plan to compete all the works to the bungalow by Easter will not be possible, as the new French doors won’t be installed until the week after, and I will then need to lay the new floor, but we won’t be far off. Will need to sort out the bathroom afterwards, but that was always to be the last thing to do. It will be good to have the place done and know that we can move on to doing work in the garden over the spring and summer.

If we can get the bathroom and the garden sorted by 13th August, we will be able to look back at a good year’s work.

A return to the past and a visit to Parliament

I’m not sure that it’s ever a good idea to go back to the past, but on Saturday we went back to Parkgate for the first time since moving away last August.

After a visit to the joinery shop to order the French doors to the living room first thing, a trip to the tile shop in Chester was necessary to order some additional tiles for the floor of the entrance hall. We are going to use the spares that we have from the kitchen, but don’t quite have enough to cover the whole hall, so a few more are needed. Since it was lunchtime by the time we got over there, it was decided that lunch at The Marsh Cat might be a good idea.

It was very nice to eat there again and say hello and catch up with the folk there. We sat in the conservatory where we used to far too often in the past and watched the world and her husband pass by.

It is a nice place and we had a very good lunch. We even took half a bottle of their decent wine home – something that was remarked upon by the waitress. “I’ve never known you two to take half a bottle of wine away with you!” She said. “I’ve never driven here before” was my reply.

I have to say that I found it a bit emotional. I don’t miss living in the village at all. I don’t miss the house. But I do miss sitting in that chair, at that table. Just a bit. I wasn’t expecting to feel like that. And it is a bit sad that the only thing that I have missed is a restaurant, but we did visit often and enjoyed the food and the attention of the staff.

I’m not sure when it might be that we will go back, but I’m sure that won’t be the last time we make the effort.

The good thing is that the money that we haven’t spent there since moving will pretty much pay for our holiday in Norway in March. So that’s a good thing.

On other matters, we have had a quote for installing a new log burning fire and will try to organise that as soon as we can. The French doors will probably be delivered next week, but we will need to wait until the weather improves a bit for that work to be done. The Building Regulations process is being done properly this time! On a downside, with the incessant rain we have suffered over the last 6 weeks or so, a slight damp patch has appeared at ceiling level in the living room. It looks like this coincides with the bottom of a valley gutter, so it looks like I will be climbing onto the roof at the weekend, provided the bloody rain stops.

And finally for tonight, I have been invited to speak at a presentation on behalf of the Lymphoma Association in The Speaker’s House in the Houses of Parliament next Monday evening. It’s been a very long time since I have been there, so it should be interesting, especially given the audience. I might even buy myself a new suit at the weekend 🙂

This is even more good news

http://ashclinicalnews.org/the-roadmap-forward-in-follicular-lymphoma-time-for-a-precision-approach/

 

18 years _median_ survival, 3 times better than those who were diagnosed in the 80s. That means that 50% of patients will survive longer than 18 years.

Just fantastic progress.

I’ve said it before and I will no doubt say it again, but there are some very clever people in this world. Some of whom are working to help people like me live three times longer than we might have done 30 years ago.

Long may this progress continue.

If anyone involved in research into treatments for non-Hodgkin Lymphoma ever reads this… “Thank you”

Professor Richard Dawkins at The Lowry Theatre

Last night we attended a “performance” by Professor Richard Dawkins, as part of a publicity drive for the second volume of his autobiography. I have long been an admirer of his work and while he can be a bit too forthright in his attacks on organised religion (which he freely admitted in the Q&A session last night), his basic thoughts on life and how it should be approached immediately struck a chord with me when I read his book “The God Delusion”. I am not a great reader of philosophical books it has to be said, but by the time I had read a couple of chapters I was hooked. He explained so clearly what I had been trying to put into words for most of my life.

The evening was really an interview conducted by another science writer, Roger Highfield, with Dawkins being asked questions (no doubt carefully rehearsed) and with half a dozen or so readings from the book almost randomly inserted at various times. It reminded me very much of a programme on Radio 4 called “Book Club”, where James Naughtie interviews an author and there is a subsequent discussion about the particular book in question amongst the two of them and some invited guests.

The problem last night was that I didn’t feel like an invited guest. I felt like a gate-crasher. The interviewer was dropping names of other no-doubt eminent scientists and academics, none of whom were familiar to me, as a lay-person. The two of them had known each other for years, evidently, and it was all a bit too cosy. It made me feel like I was hanging around the edge of a clique with no hope of entering the inner circle.

The evening was entertaining enough and there were some good questions from the floor, but there was definitely something lacking, for me at least. I don’t quite know what I was expecting, but what I got wasn’t it – if that makes any sense at all. Maybe with a different format, or different interviewer, I might have got more from the experience, but as it was, we walked back to the car with a “What was the point of that?” question hanging over us.

I will just continue to read and enjoy his books.