Category Archives: lymphoma

At last – an update. Venice (again) and the new car

Even the not-so-eagle-eyed will have noticed that I haven’t posted anything for a while and the longer it goes between posts, the harder it is to sit down and put anything “on paper”.

But, after a couple of months and with a hint last week, there must be something to share.

Firstly, there has been another trip to Venice – our fourth. I have said in the past that once the city gets under your skin, it’s the kind of place that you just have to go back to. As “old hands”, we are now familiar with where to go and where to eat, etc., but even this time we did at least three things that we hadn’t done before on previous trips.

We went out to Torcello, the first island inhabited in the lagoon – quite a strange, quiet place now that there are only a couple of hundred people living there rather than the 20,000 that used to fill the island. Lots of silted up small canals, a couple of restaurants for the tourists walking from the vaporetto to the ancient church with its amazing fresco. And that’s about it. Worth the short ride from Burano though.

Torcello

Secondly, we went to the Doges’ Palace, the magnificent seat of power for the Venetian empire. Quite why we haven’t been there before I don’t know, but it’s well worth a visit, if only to walk across the Bridge of Sighs.

Sighs

Thirdly, we decided to go to Harry’s Bar to sample a Bellini, a peach and prosecco cocktail invented there. Sitting at the bar, these two short drinks set us back 45€, but it was an experience – that doesn’t need to be repeated.

Finally, we decided to try the cicchetti at the little wine shop near to the gondola workshop. We had been there before, but just to try the coffee. This time, we braved the 2€ glass of prosecco (much more reasonable, I am sure you will agree…) and their small canape-like cicchetti on a slice of “french” bread. Some had smoked salmon on cream cheese, others had dried and salted cod. They were all delicious and again, bargains at 1.50€ each. Enough lunch could be had for two for only 13€. Highly recommended.

Cantine

And, here are some random snaps from the rest of the few days

Calle-dei-mortiDon't-Look-NowGondola-panoramaGondola-workshopMoon-over-Grand-Canal

I have had the new car just over a week now. Mercedes are, unsurprisingly, buggering me about over the collection of the old one. The car itself is also making life difficult, by throwing up a “you need to have your brakes checked” warning on the dashboard. You cannot hand a car back with such warnings, so I will have those sorted this week

The new BMW is simply astonishing. It’s difficult to describe how different it is from the Mercedes, in just about every way.

It has an unbelievable amount of power, and loads of torque right across the rev range. The acceleration is astonishing and almost addictive – but that is what needs to be kept in check, for the sake of the fuel consumption, the tyres and of course, my licence!

Unlike the Merc, it goes round corners, with the car going where you point it, rather than some random destination outside of the curve. It’s also surprisingly quiet, unless you have it in Sport mode where some flaps in the exhaust open up to make it a bit louder – I don’t do that.

Going back to real leather seats, as opposed to Mercedes’ vinyl ones is good and the BMW ones are very nice indeed.

And, the sat nav works… See, it can be done.

And, I have been getting well over 30 mpg, which is excellent.

This past week, I attended another NCRI Committee Meeting and have volunteered to join a sub-group, rather than just stay on the main committee. I haven’t had much direct involvement or requests for assistance from the committee in the year I have been involved, but it transpires that all of the real work is done in sub-committees. Hopefully, there will be more for me to do and assist with at that level.

At the forthcoming local Lymphoma Association meeting in Manchester, I have been asked to give a talk about my NCRI experiences and what it is that they do. It’s a shame that I haven’t a huge amount to tell regarding the “everyday” but I will give it a go in May.

Just before heading off to Venice (literally the same morning, but that’s another story) we had the bathroom refitted. This means that only 569 days after moving into the bungalow, every room in the place has been renewed, redecorated, upgraded and finished. Now, it’s the garden’s turn and as that gets weeded and cleared and replanted, I cannot take any credit. It’s starting to come together, in the back garden now, as well as the front and as it grows and matures, it’s going to look really lovely. Ann does a fantastic job.

Finally, Easter is upon us once again. Let’s hope that the weather next weekend is as good as it has been these last two – one can live in hope…

And so this is Christmas

Merry Christmas to everyone who reads this blog. Here’s to a happy and peaceful end of the year and a prosperous and safe 2017.

The blog has been going a long time now and I have picked up some loyal readers along the way, so many thanks as always for staying with me and reading the inane ramblings.

I am pleased to report that my biannual checkup with my consultant has been and gone and as has become routine, there is nothing to report. Which is excellent news. He did cancel an appointment on me as I was walking into the clinic though, which wasn’t very good news, but he had been delayed in the US by aircraft problems, and was still on the airport tarmac in Philadelphia when he should have been seeing me. I don’t mind that, though. I’d rather have a consultant important enough to present at conferences in the US, and be delayed over there, than one who wasn’t such an expert. So barring anything untoward, that’s that until mid June again.

I am also pleased to say that the end is in sight for my dalliance with Mercedes. I know when I can leave my contract with them for no penalty and it coincides with the delivery date of its replacement. I don’t need a car the size of the Merc, so I have decided to be sensible and have ordered a three door hatchback from BMW.

When I say “sensible”, that’s almost completely true, but not quite. Thinking that we are in the last-chance saloon for larger engined small cars, and having coveted a six cylinder petrol BMW since I was at school, I have decided to go for the 3-litre version. Next time, we will be all plug-in hybrid, so cars like this will no longer exist. I know that I don’t need a car with such power. I know that the fuel costs will be significantly more than the Mercedes, or the diesel BMWs I have had in the past, but I am really looking forward to it. I drove an example of last year’s version on the way back from Kent in October and it was just incredible. Also incredibly, despite the specification, including the options list being fairly well visited, it is around £130 per month cheaper to rent than the Merc – which will keep the shareholders of Shell and BP happy…

I promise that I will drive it very carefully.

It should arrive in plenty of time for us to take it to Islay in July. We are renting a house with some very good friends so we are looking forward to revisiting old haunts and showing them around.

Right – time to make the stuffing balls.

And here’s a nice picture for you.

l1008244-pano

 

Some good news today

I saw my consultant this morning for my six monthly check-up. When I say “check-up”, I really mean 10 minute chat followed by him giving my nodes a grope and sending me on my way via the phlebotomist, who now recognises me and knows me by name without checking my notes.

Being recognised, while good, isn’t the good news.

The good news is that he gave me the choice of having or not having a CT scan at Christmas, as opposed to just telling me that’s what we would be doing on previous occasions. I chose not to, and he said that was a wise choice. In the US, I would be given a CT scan every visit, but that’s just so that they can spend the insurance money. Over here, even when it is done privately, consultants are a little more patient-centric rather than bank-balance focused. 2016 is therefore a significant year in my post-diagnosis world.

For the first time in eight years, I will not be having a CT scan this year.

The last year that I didn’t have one was 2008, which feels like a lifetime away. So much has happened (as evidenced by this blog…), but so much that is positive has come out of this whole experience. I explained to him that while I would never have chosen this to have happen, obviously, I am glad that it has. I have done things I wouldn’t have done, met people I wouldn’t have met and become a better person that I might have been had it just been a hernia all those years ago.

Here’s to this being the first of many years of not having to have CT scans. I give it two or three. (There’s me, not being able to quite take the good news at face value…)

Oh, and on other matters, I have decided to spend the “reward” funds for being with my company for 10 years on a dry stone walling course. If I can only get the blasted website there to work…

Blitz. And a place called Hope

Well, more of a war of attrition really, but after some extremely hard work on behalf of Ann, double digging this plot and removing at least three wheelie bin loads of roots and weeds, the Lost Garden of Comberbach is finally looking pretty good.

We did manage to plant the trees last week and today, I laid the turf. It looks good already, but will obviously need time to settle down and fill in the joints.

So, in nine months, along with all the other things that we have done, we have gone from this

IMG_6811

to this

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Now, that is what I call “progress”.

Tomorrow, the slate threshold for the French doors will be collected and I will fit that on Monday. I will also be able to finish the final pieces of skirting to the living room and the painting can completed.

The new front door will be installed on 13th June, which will make a huge difference to the look of the place.

Not sure what we are going to do with ourselves now that this is coming to an end. Move on to the back garden, probably.

And all of a sudden it’s June next week. Again.

Time to think about the summer holiday. Orkney this year, in a cottage that is walking distance from Skara Brae, so that should be good in the long, long evenings up there in late June. It’s a long drive just for a week, but we do get to stay at The George in Inveraray on the way home, so that’s good. However, our stop on the way up is north of Inverness, so that will be a bit of a trek one Friday in a few week’s time.

June is also the time to see my consultant for 10 minutes. I am sure that it will be business as usual when I see him. To be honest, I don’t think that six-monthly check-ups are even worth it any more, but seeing as BUPA pay him about £250 every time he sees me, I am sure that we will carry on like this over the next few years. I am pretty sure that if this were an NHS clinic, I’d be on 12 monthlies by now. What these appointments do, though, is get me thinking about “things” again, despite the fact that I’m feeling very well. I AM very well. But the upcoming clinics just get you to think about what might be to come a bit more often than during the rest of the year.

One interesting thing that seems to be emerging from studies of people who have had stem cell transplants ( a real possible treatment for me some time in the future ) is that they seem to be presenting with heart disease much more often than the general population. Given that the process involves harvesting your stem cells, growing them in the lab, while simultaneously killing off your entire immune system, such that you have to spend three weeks in complete isolation in hospital as they reintroduce your stem cells and you grow yourself a new immune system, is it any wonder that other parts of the body decide to rebel? Heart problems could be a price worth paying to avoid the consequences of not having a transplant, though. I don’t know. If ever that were to be a possibility, that’s a long way off, so I shall file that under “not yet pending” and not worry about it.

What I have also learned over the past weeks, having attended the Lymphoma Association’s Annual Conference in Nottingham at the beginning of the month (and elsewhere) is that it is a good idea to volunteer for clinical trials if one is available when you next need treatment. There is a lady who attends the support group in Manchester for example, who was on a trial for a new antibody therapy and her disease has been all but wiped out completely. To be fair, so has mine at present, having had the best standard treatment available at the time when I needed it. I have said this before, and I will no doubt say it again, but I am a very lucky man. I know it. And I am very grateful.

A question was asked at the Conference as to whether there was a link between pesticides and herbicides used in agriculture and lymphoma. The expert consultant on the panel (who also happens to be on the NCRI Committee that I joined recently) suggested that there was a definite link, when the population as a whole is considered. It is impossible to say whether an individual’s lymphoma can be attributed to these chemicals, but the growth in incidents of lymphoma over recent years mirrors, but lags behind, the growth in the use of agrochemicals. Never was there a better time to eat organically and stay away from farms than in the 1960s and 70s.

Oh well… If only we had known then, what we know now.

It doesn’t really matter what the cause is, or was. I have this and while it’s dormant now, it’s not going away permanently and I’m fine with that. What does matter, and I believe and hope that things are improving, is that we as a society, continue to reduce the use of agrochemicals and give our children and grandchildren a chance of avoiding lymphomas, or any other disease for that matter.

If the link with farming is proven, (can you prove that?) wouldn’t it be nice to live long enough to see that the incidence of new lymphoma falls year on year as the use of agrochemicals reduces too?

Bill Clinton once said “I still believe in a place called Hope”.

So do I.

(Blimey, I’m sounding like a tree hugger)

(Blimey 2, I have actually written something about lymphoma in this blog about lymphoma. What is the world coming to?)

 

 

So here we are, seven years on

Time flies when you’re having fun

Exactly seven years and over 300 blog posts later, I am pleased to say that I am still here (obviously) and as fit as I will ever be. My next appointment with the consultant isn’t until next month, but I know that there will be nothing for him to find and I will be good to go for another six months. So, that’s all good.

It’s been a very interesting period, as all those posts will testify. I defy anyone to read back from the beginning – that way madness and a very dull morning will lie – but I am glad I started this blog and I am glad I keep it up. One day it will revert to its original purpose, but I am pretty confident that day will be a long way off. So much for only five years to live! Pah!

A lot has happened in that time of course, but I know that in so many ways, my life has changed for the better. I wouldn’t change a single day and truly appreciate everything that this part of my life has brought to me.

Once again, sincere thanks to everyone who has and continues to support me, even though, at the moment, I am in a quiet patch as far as needing support goes. I will let you know when I need a shoulder!

In other, more important, news, I am also pleased to say that the living room is now 99% completed. I need to order the slate threshold to the patio doors, which will allow me to complete the last of the skirtings, but everything else is just about finished. I have to say that the room looks 100% better than it did a month ago and it is now possible to foresee a time when there isn’t anything to do inside the bungie. It’s been bloody hard work (not just by me!), as previous posts have described, but it’s been worth it.

IMG_6634

IMG_6639

L1005869

The outside is a different matter…

A new front door has been ordered and should be fitted by the end of June. Steps are being taken to order a new bathroom and it looks like a rotovator will be hired for a weekend soon. May Bank Holiday as a blitz on the garden?

It will be good to get some turf down there, plant the fruit trees that are still in their pots, and generally tidy the front garden up.

The frog spawn doesn’t seem to have come to much. The cold spell must have done for them, which is a pity.

I collected £57 for Bloodwise

I did my collection at Tesco’s largest store on the Wirral last Sunday morning. It was breezy and cool but dry and the collection location was inside the glazed, enclosed canopies that Tesco seem to like.

I have to say that when compared to my previous stint, it was not a resounding success.

Now, I was collecting on a different day, a different time of day, at a different Tesco (Bidston has a different demographic from Heswall), at a different time of the year (the end of January is always a stretched time for a lot of people), so that might have something to do with it.

I knew that collecting from 10am on a Sunday, as the store just opens was always going to be a challenge, but when I had collected precisely nothing by half ten, I was beginning to question whether it was worth the cost of my diesel to get there. I’d be better off just making a donation myself and staying at home. Things did improve over the next hour and a half, though, but I was disappointed with collecting over £100 less than I had last year at Heswall. And last year there were two of us collecting for that two hour slot, not just me on my own as I was on Sunday.

As last time, it was interesting to note who was making the donations. Once again, it was older people and those with young children. Young adults were the least generous and I did notice a lot of people seeming to deliberately use the “IN” door when leaving the store, so that they didn’t have to walk past me. Eye contact was virtually non-existent.

I also noticed that many of the people who did donate, were not at all interested in the name on the bucket. I could have been collecting for anyone, it made no difference. They just dropped a few coins in the bucket and walked off. They might have been donating to the Wirral branch of the Ku Klux Klan for all the notice they took of the banners and the bucket.

Last year, we had a lot of people stopping for a chat when they donated. “My Dad had leukaemia” or “I have lymphoma” type chats – people relating to the charity and us as collecting volunteers. This year, absolutely nothing. The name change meant nothing to the people. Only one person asked what Bloodwise meant in the whole two hours I was there. When I explained, he said “I assumed that it was about diabetes or HIV or something”.

It would be interesting and informative, I suspect, if it were possible to collect under the old name on one weekend and the new name on the following one, with the same people collecting at the same times etc. But that’s not to be.

I am grateful to the kind and generous people of Bidston who did drop a few coins in my bucket last Sunday morning and I do know that friends who collected later in the day had a bit more luck than I did. But I do have the impression that collecting money for this charity has been made a whole lot more difficult.

And, that’s a crying shame.

Not The Flying Scotsman and AdBlue and tin-rattling (again)

That most iconic of Britain’s steam locomotives, The Flying Scotsman (4472, when I were a lad, but some other number now) has just had a major overhaul and is back on the track after several years of absence.

She (he? it?) was due to take a train from Manchester Victoria, up to Carlisle on the settle line and then back via the mainline to Manchester on a 12 hour trip yesterday, arriving back at around 19:15. I thought that I would go and have a look at her arrival.

Once I had got to the station, via a tram which was completely full of angry Manchester United fans (always a pleasant experience 🙂 ), I had a look around the newly refurbished station to get a good vantage point. A decent chap on the ticket barrier would let me through with a nod and a wink so as to get to the correct platform, but suspiciously, he hadn’t been told that the train was coming in… Because it wasn’t.

I found out via Twitter that it had a problem with its brakes and was therefore not in a fit state to haul a train all day. It was likely that an alternative loco was to haul, but that’s not quite the same thing, and since it wasn’t very warm, I decided to cut my losses and head home.

As I was leaving the office car park, I remembered that the train was due to be passing Eccles station about 15 minutes before arrival at Victoria, so taking a leap of faith, I parked my car close to Eccles station and waited there.

A darker, wetter, more forlorn station it is hard to imagine. extremely poorly lit, it would be a dangerous and nasty place to stand around at night waiting for a train, especially if you are a lone woman. But last night there was a family and a few others waiting for the special to come through. Chatting to one lady, it turned out that the FS was actually running, but as the second loco in a pair at the front of the train, with an old diesel pushing at the rear. How they coordinate the power output of these three engines I have never been able to work out, but it obviously works and the train was due in at exactly the time I expected.

What I wasn’t expecting, was for it not to stop.

I found myself the best place I could to have the steaming locos slow down and stop right in my frame and waited a few minutes. On cue, the single light of the front loco came around the bend half a mile up the track… it was obvious that this train wasn’t going to stop…

It thundered past the platform, at probably 60 or 70 mph, with full steam, smoke, whistle, the works. The flames from the fire lit up the smoke in the darkness and it was a fantastic sight. The smell of the smoke lingered long after it had gone through.

I got one shot…

 

Not-the-Flying-Scotsman

I should get out more often taking photographs of these things – they are really interesting and photogenic. We have loads of preserved lines in the NW, so it’s not hard to do.

On the way home, the warning came on the dashboard of the car that the AdBlue tank was once again running dry. This system is the one that clears some 85% of NOx emissions from exhausts and is a good thing. VW are. allegedly, going to retro-fit millions of systems in their diesel cars to get round their emissions problem. Let’s hope that they fit tanks big enough to last between services.

Mercedes lied to me. They said it was a system I didn’t need to worry about and that the additive would last between services. Once again, it hasn’t. There are 2,000 miles to the next service.

Good job I bought a couple of litres and kept it in the boot, just in case.

Right, it’s time to go and rattle a tin at Tesco in Bidston on behalf of Bloodwise. It will be interesting to see what a difference this stupid name change has made. You have already read my feelings on this…

More later.

An evening with The Speaker

That was quite an experience, but as I had hoped, an interesting one. Tonight was the night I gave my little speech to invited guests at Westminster as part of the Lymphoma Association’s launch of a new policy/lobbying document.

They are raising awareness of the long term psychological impact of being a “survivor” in order to try to get more support for those that need it. They have used my story as part of the document and asked me to tell it tonight.

On arrival at Portcullis House, the working offices of most MPs, queuing for about 20 minutes before going through full airport security to get in, we waited in a holding area until being ushered through the tunnel to the Houses Of Parliament and into The Speaker’s quarters. This isn’t where he and his good wife live, but the public rooms below. They are, as you would expect, very grand with high ceilings and very nice wallpaper, courtesy of a previous occupant of the position. Paintings of some of the previous Speakers look down on you – literally and figuratively I suspect. It will be the wigs that do it.

The Speaker himself joined us and introduced the event, which consisted of several short speeches by the Chief Exec and other members of the charity board. And one from me.

All in all, it was a good evening and I had some very nice feedback from people in attendance. Surprisingly, I didn’t feel nervous, although friends from Manchester support group said that I looked it (!) and all in all it was an interesting thing to do. Let’s hope that those there in a position to help actually do so.

I had a glass of The Speaker’s wine and some of his sausages on sticks, so that’s all good.

Unfortunately… the train home has been delayed by half an hour due to a “medical emergency”. I’ve never seen anyone having CPR for real before, so having to swap trains is actually a minor inconvenience compared to what that lady was going through. I hope she’s OK. Will have missed the last tram back to the office now, though, so it will end up a very long day.

Now… Where’s the tea trolley?

My life is worthless (well, sort of). And the toppest Top Tip you might ever read.

That’s a bit of a dramatic (over-dramatic) headline, but, according to pretty much all the life assurance companies in the country, it may as well be true.

As part of the house move, the mortgage is going to have to increase. Consequently, I have been making enquiries about increasing life assurance. We currently have insurance to cover the mortgage we have now, but I thought I would take out a new policy to cover the new mortgage and some spare, so that in the event of the inevitable, it would be paid off and my Merry Widow could take that year-long round the world cruise…

Unfortunately, a pedalo on the lake at Hove is about as close as she will get. I am uninsurable.

With a pre-existing condition, I knew that life assurance would be a challenge, but basically the insurance companies don’t want to know. They won’t even cover me for any other cause of death, excluding the lymphoma.

The best they can do is insure me after 4 1/2 years of remission. In my case, they take that to run from the end of the maintenance, which would be at the end of 2016. So, we will revisit this at the end of next year. 

The trouble is, of course, that 4-5 years is the typical length of remission before becoming symptomatic again. With the benefit of the maintenance, that should be longer in my case, but who knows. Cleverly, the insurance companies have made the condition for getting insurance pretty nigh impossible for a lot of people. By the time they get to be in a position where they have been long enough post-treatment, they will be needing the treatment again… Clever.

I will therefore have to rely on the death-in-service benefit through my work to cover the mortgage in the event of me shuffling off. Which is OK, but that money should be used for something else. Like that cruise.

So, to the Top Tip.

Please, please, if you can afford it, buy enough life assurance AND critical illness insurance, while you are young and fit. Or even older and fit. And, if you can afford it, DO NOT STOP PAYING THE PREMIUMS. I had critical illness once but I let it drop when we moved north and were strapped for cash. If have posted before that life would be very different now if I’d still had that insurance. 

There. That’s a word from the “wise-after-the-event”. And you can have that tip for nothing. Don’t leave yourself with nothing when you need it…

Losing one’s “mojo” – and how to find it again

Mojo

Defined by the OED as:

Magical power, voodoo, the art of casting spells; a charm or talisman used in casting such spells. More generally, esp. in recent use: a power, force, or influence of any kind

Well, I am not a shaman, I have no magical powers and I am rubbish at casting spells. But the “recent usage”, of “power” or “force”, is what I have been getting at when I have said that I have lost my photographic “mojo”. I have stopped enjoying taking photographs and I am at a bit of a loss as to what to do about it.

Those of you who have known me for a while will know that for many years, taking photographs has been a huge part of my life. After a lull while the children were growing up, when I basically took a lot of snaps as Dads do (and there’s nothing wrong with that), I got back into it in a much more serious way in maybe 2002. For several years thereafter, I was taking a lot of photographs, making the most of every opportunity and using a lot of film. I have lever-arch files full of negative and slide films on the shelves in front of me dating back to that time.

In recent years, however, in relative terms, I haven’t taken many photographs at all. A friend of mine asked me last week when I stopped, and I had to think pretty hard. I linked it to being diagnosed with the cancer, but I’m not sure if that isn’t too convenient a “hook”. I will need to do some analysis to see when I slowed down and eventually came to an almost complete stop. It might have been around that time, or it might have been a little later; I will see.

After all, it’s not as if I am not fortunate enough to get away several times a year to new and interesting places. Last year we went to Sorrento, Cornwall, France and Istanbul. One would have thought that those locations would have offered a wealth of opportunities, but that doesn’t seem to have been the case.

This year, the diary currently has four trips too, including trips to San Francisco and Vienna, plus return visits to Skye and the Somme. Therein lies one of the problems – “return visits”. On a return visit anywhere, I tend to try to take the same photographs as I did the first time, especially if I have been pleased with them. That isn’t good.

Could it be related to the diagnosis? Quite possibly. Cancer does funny things to you, even when you are in remission. It changes the way you think about life (as this blog is a painfully long witness) and in many cases, it can lead to depressive thoughts. I have tried very hard to stay positive throughout this whole experience and for 99.9% of the time, with the support of family and friends, I have managed to do so. Maybe, my lack of photography is sitting in that 0.1%?

Having a further think, I am wondering if it is related to the “anti-photography” movement on the streets, these days. S44 of the Terrorism Bill had the effect of giving any jumped-up, fluorescent jacketed security guard the idea that he could prevent anyone from taking photos on the streets. Many policemen were of a similar opinion, unfortunately. No doubt, recent events in Paris and elsewhere will bring this nonsense back to the fore. While I was never and could never be a “street photographer”, I used to enjoy wandering around cities taking photographs. I can’t remember the last time I did so.

Or maybe it’s something else? I don’t know.

So, how does one get the “mojo” back?

A project.

What I need is a project.

In the past, I have enjoyed going to classic car rallies. There are many photographs on my website taken at rallies in the NW as well as, a couple of times, at the Goodwood Revival. Not only do they offer the opportunity to photograph some interesting cars, be they Ferraris (will be lots of Ferraris at Goodwood this year!), Maseratis, Jaguars and all the rest, the people associated with them tend to be interesting characters too.

So, this year, I am going to make a concerted effort to attend as many as I can. Lots of “stately homes” around here hold them in the spring and early summer, there is one in Lytham St Annes and smaller ones all over the place.

“A project” is a very good idea and one that I will embrace.

A new camera…

Much more controversial, of course. A new camera does not a new photographer make.

But, for years I have been toying with the idea of buying a digital Leica M, to accompany my film M, and maybe this year is the year to do so. I have had my Nikon D700 for a few years now, and enjoy using that too, so maybe it’s time to upgrade that instead (I can’t afford both). But, I have long been frustrated with colour film work, notably since taking slides, my favourite form of film, became so expensive. A roll of film now costs about £10 and processing is about the same. This means that every time the shutter is clicked, you are spending about 50p. That soon adds up and is a major consideration.

Colour negative film is cheaper to buy, at around £5-6 per roll, and can still be processed cheaply. However, you are reliant on others doing it properly and with my last roll being ruined (shots of the Millau Bridge in October, unfortunately), this is becoming more of a worry, especially as film use continues to decline. I could process either film myself, of course, but my volume of film taking means that the chemicals are very expensive in small quantities. A bit of a chicken and egg thing really.

So, if I want to continue to shoot colour, with an M, I might need to grit my teeth and bite the bullet , both at the same time.

Let’s see what the spring brings.

How to have a CT scan

Not the sort of thing that you would choose to do, unless absolutely necessary, but I am sitting here starting the process of having another CT scan. I have lost count of how many this is now. Could be the six or seventh.

I thought I would describe what it’s like. What you have to do.

On arrival at the clinic you register your presence on the computer. No need to speak to the receptionist if you don’t want to. After waiting for a while, your name is called and the clinician comes to see you. You will have been given a questionnaire to complete by the clinic when they confirmed the appointment but inevitably, like me, you will have forgotten it. So, they give you another one and you tick all the relevant boxes.

In order for the CT to work properly, you need to drink a litre of a marker fluid. It tastes of aniseed and they offer various cordial flavours to mask it, but I prefer it neat. You have to drink this over a 45 minute period, two cups to start, then more at 15 minute intervals, leaving one cup for just before your scan. This fills the stomach and the bladder and allows the scanner to see your disease more easily, but you are allowed to use the loo if you want to.

You wait.

And then you are called through to the business end of the clinic.

You are handed a basket and a gown and strip down to your shoes and socks and underwear. Your watch and any other metal ornaments are placed in the basket.

A clinician inserts a cannula into a vein and secures it with tape. This is used later.

You wait.

You are called into the scanning room by the radiologist and place your bag of clothes to one side. the scanner is a large, cream-coloured machine with a table area to lie on and the donut-shaped business end that will move over the table and you later.

They ask you to lie down on the table with your feet over the bottom end. A pillow is below your head and you get yourself as comfortable as possible. The radiologist connects a plastic tube to the cannula that will deliver the dye into your blood shortly. If you are having your torso scanned, from neck to groin, as I do, they ask you to stretch your arms above your head out of the way, taking care not to snag the cannula and the tube.

The radiologist leaves the room and works behind his lead-glass window.

They inject the dye into your vein, telling you that you will feel a flush through the body almost instantly and that it might make you feel as if you have wet yourself. It’s amazing how quickly the flush passes through to the extremities; it’s almost impossible to believe that the blood flows so quickly.

The radiologist tells you that the procedure is about to begin. The scanner starts and the table is lifted into position so that your feet can pass through the hole in the donut. The donut passes across your body to reach your head end and you can see the x-ray scanning heads through the ribbon window on the inside of the donut hole. It gets into position and a discordant voice from within the machine tells you to breath in and hold your breath. Which you do.

The scanner then begins to move across your body. You can see the x-ray heads rotating through the window and as the donut moves down, on the face of a control screen, the international radiation symbol is lit.

Breathe normally, please.

The scan is repeated two or three times. It doesn’t hurt. It isn’t noisy like an MRI scan is. You just know that you are at the receiving end of some powerful x-rays. The flush and the procedure are over.

The radiologist comes back in and disconnects the tube and tells you that you can go back to the waiting area.

You wait.

The nurse comes back and removes the cannula, covering the wound with a plaster and you are then free to get dressed and leave. Via the loo…

A few days later, you will receive the results of your test, over the phone or, preferably, face to face with your consultant. I see mine on Wednesday next week, so we should be able to judge what’s been going on over the last 16 months since my last one.

Fingers crossed indeed.

Keep taking the tablets…

I haven’t updated this blog in nearly a month, so it’s about time that I did.

Lots of routine stuff has happened, of course.

Once again the car has been serviced. This I time, I had to pay for it myself, as the “service pack” that I bought with the car, which gives the first 60,000 miles servicing at a discount, has expired. The car has now done more than 70,000 miles and, incredibly… , this is a major, serious service. All the filters need to be changed again and I was pleased to receive a text from the garage telling me that the front brake pads and disks all need replacing too. To have got 70,000 miles out of them is very good, but when you turn up to collect the car and are given a bill for £1,060, it’s a bit of a leveller. Even the service agent at the garage raised her eyebrows a bit as she told me how much it would be.

The rear brakes are also in need of replacement in 10,000 miles. I have had these done before, back in June, so I will question that when the time comes round. They really shouldn’t be wearing out so fast. I suspect that there is a faulty reader, or something.

I have also been considering what my next car should be, but it’s difficult to decide with having the house on the market. (No joy on that front, I’m afraid). I really don’t want to be hiring a car for 40,000 miles again in the Spring, and then moving closer to the office so that high rate isn’t necessary. That would partly defeat the object of the move, if it ever takes place. I will make a decision in the New Year, and probably change after Easter.

The Istanbul Challenge voting has been and gone and, incredibly, my shot came fourth. I really wasn’t expecting that, so maybe I must still be doing something right. A decision was taken while in Istanbul that 2015 should see us go to Vienna. Hotel already booked! Flights are a bit of an issue, though… guess which airline offers the cheapest flights to the city… It’s not Austrian Airlines.

And a couple of not really routine things to report too.

Firstly, I have stopped taking the statin tablets prescribed to me before we went away. I have had high cholesterol for as long as I can remember, certainly all of my adult life. When I first found this out, maybe 25 years ago, I went on an extreme low-fat diet and ate at least 60 grams of oatbran every day and managed to get it down to something “acceptable”. However, one cannot live one’s life like that, so the regime quickly fell by the wayside. At a routine blood test at my GP, the results came back high as usual and he recommended that I take a statin. This is an “every night for the rest of your life” deal.

Within the first week or so, I had had two nightmares, something that I haven’t had since I was a child. Disturbed sleep is one of the side effects that can occur, and fortunately, the nightmares only occurred a couple of times. However, since then, I found that I would take a very long time to get to sleep and wake several times during the night. I even installed an App on my phone which monitors your sleep pattern, scoring a most impressive 61% average quality of sleep. Getting fed up with this, I consulted the GP and have been advised to stop taking the tablets for a couple of weeks and see if this helps. So I have, and so far it think it has.

I think I’d rather live with the higher risk of stroke and heart attack than not sleep properly for the rest of my life. That can’t be good for you either. Maybe there is an alternative drug that they can give me that won’t affect me like this, so we will see.

Monday brings the CT scan I have written about in the past and have been waiting for. I don’t not look forward to these, if that makes sense. I know that they aren’t good for you in a basic physiological way, given that they are about as strong as 400 x-rays, but the information that they generate is far more important than that. I see my consultant again in 10 days time for the regular 4 monthly check up and the results of the scan, so that will be interesting. With a bit of luck, he still won’t be able to see anything, but as time goes by, and being 4 1/2 years into my remission, I am staring to feel like I am on borrowed time with this. But, let’s not jump the gun and see what happens in only a few days.

Christmas is coming around all too fast once again. A time to count one’s blessings, appreciate once again the support from family and friends that help us get through the days and weeks and make sure that they know that they are appreciated and loved. I couldn’t do this on my own and my heart goes out to those that do not have the support and love that I enjoy.

No presents for us this year. We have booked to go to San Francisco for a week in March, so that will be a big enough gift. We are flying with Virgin…. Maybe I will hire a car over there for a day and give the booking form as a gift. But now the secret is out… I’m sure that there will have to be a little something under the tree.

Unprocessed film and news from my recent consultation

The fact that there was still an unprocessed film from my week in Cornwall at the end of June is testament to the amount of pleasure I am getting out of my photography at the moment. I am hoping that a forthcoming visit to France and Istanbul will get the creative juices flowing again.

However, given a very rainy Bank Holiday Monday, I finally got round to processing the film. Not very successful, I have to say – the processing was fine, it’s what I found when I’d done it that was a bit of a disappointment. I managed to scrape together a couple of shots from the roll, so I thought that I might as well put them on here.

The first shot is of Mevagissey. I am pretty sure that there’s a colour one from there on posts from June, but this is obviously a black and white version. The colour is better, since it’s a colourful place, but never mind that.

Mevagissey

The second is from Port Isaac on a day which probably gave us the worst weather of the holiday. Either heavy rain or horribly overcast. But, beggars can’t be choosers and it’s too far just to pop down to take advantage of good weather.

Port-Isaac

Since my last post, I have been to see my consultant for a regular 4 monthly check-up. 

He has slightly changed his story with regards to what he could see on the CT scan from last year, but it doesn’t materially change anything particularly. He does want to do another scan in December and will send me an appointment nearer the time. He is proposing to do further scans “over the next few years” and then stop doing them until he thinks it necessary again. These series of scans will be used to act as benchmarks against which future, but not so frequent, scans will be assessed.

This is a good thing for a few reasons, but mostly because he obviously expects me to still be alive in a few years after he has done the series of annual scans.

I asked him about “remission” (or “partial remission” in my case) and when that would normally be measured from. This is from the end of the chemotherapy that has caused the disease to shrink. It ignores the maintenance, because that is intended to just increase the remission period. That said, he suggested that there is some evidence to say that the Rituximab maintenance can also continue to shrink the disease during that period. So that’s also good news.

What this means is that I have now been in “partial remission” for four years and with no sign of the disease returning at the moment, this is another successful visit over and done with.

Steady as she goes, once again. Keep on watching – and waiting…

Twitter is rubbish and brilliant. At the same time. Lymphoma news I couldn’t easily have found elsewhere.

Two updates for the price of one, today…

I’ve been on Twitter for a few years now. At first I just couldn’t understand what it was all about, but as it grew and by following friends that I knew who had migrated from elsewhere on the internet, I soon got the hang of it. It has rapidly grown into one of the biggest wastes of time on the internet (as if that wasn’t bad enough in itself) and also one of the most useful.

If you have an interest in tropical fish, or cabbages, want to know what’s happening in your town, or Liverpool Football Club (other teams’ Twitter feeds are available, apparently..) you can do so easily just by following individuals and companies on Twitter. The same is true of Facebook, but there are massive privacy issues on there that Twitter have so far, for the most part, resisted adopting. Long may it remain so.

So, by the judicious following of a couple of organisations, I have learned some interesting things over the last couple of weeks.

For example, Lymphoma Research have recently posted a link to an article on “Reduced intensity treatment in early-stage Hodgkin’s lymphoma” which, although not directly related to the lymphoma that I have, was an interesting read nonetheless.

Another source, Non-Hodgkin’s Today have lots of useful links, such as this one comparing cancer survival rates across various countries and this one on the “The evaluation and optimal use of rituximab in lymphoid malignancies”, something that is definitely relevant. There was this one, from a couple of months ago, about a new drug from a company called Gilead, which is being tested right now for those people who are no longer responsive to Rituximab.

All good stuff and very difficult to find if you are not pointed in the right direction.

Darkside: the new era starts tomorrow. I will make it count

I see the new consultant in the morning. I have my history printed thanks to this blog – without it I’d never have been able to remember exactly what happened and when – and I have the other details that he will need.

I do feel a little like it’s all starting over again. It’s starting afresh, having this “second opinion”, which is good, especially as he is even better qualified than Consultant Nr 1, but I don’t expect to have quite the same relationship with this one as I did the last.

Which is a bit of a shame. These people become extremely important in your life when the decisions that they make can quite literally mean that you have a better or worse chance of living to your 60th or 70th birthday. It would be nice to think that you can become fairly friendly with them, under those circumstances. However, much like it doesn’t do to get too friendly with staff, should you need find the need to sack some of them, so there is a good reason why the consultant/patient relationship needs to be kept at arm’s length. They need to be dispassionate about the decisions that they encourage you to make when it comes to treatment and don’t need to get themselves personally involved any more than any empathetic person would.

Not that I think that I was very friendly with Consultant 1,  but I had built up a rapport with him and his staff and he did get a couple of bottles of wine and a Christmas card from me. Regardless, I am not seeing these people to make friends. I am seeing them to get the best advice and treatment that I can so that I can spend more time with my real friends and family.

That’s what this is really all about.

Which  brings me to “Darkside”, a radio play written by Tom Stoppard around the music and themes in Pink Floyd’s Dark Side of the Moon, an album that has been the soundtrack to my life for nearly 40 years. I can’t claim to be 12 when I first heard it, but I can’t have been much more than 14. It’s the only vinyl album that I wore out twice. I listened to the play on the way home this evening – some challenging themes of life, death and philosophy in there, but I felt that there was something missing. The narrative was a bit disjointed. The fading in and out of the music meant that neither the music nor the play were allowed to speak for themselves, if that makes sense. The play would have been better without the interludes and the music most certainly doesn’t need a play over it. Oh well. Maybe they can develop the play into a “proper” play and flesh it out fully. An interesting and worthwhile idea, though.

The most important thing to take from the album, in my opinion, is the lyric from the song “Time”

“And then one day you find 
Ten years have got behind you 
No one told you when to run 
You missed the starting gun”

And from the play

“Life is not a drill”

I have been listening to that album for 38 years and sometimes it’s still tempting to think that the starting gun hasn’t gone off yet. Well it has – a long time ago. I missed it, and have been playing catch-up ever since.

We come this way once and once only. One day it really will be your last and those ten years or even ten days that got behind you will feel like a lifetime.

Make the most of every day. You know it makes sense.

On being a “buddy”, stress and what it might do to you

Regular readers will know that last year I volunteered to be “Buddy” for the Lymphoma Association. When I had my training back in March, they said it might be some time before my first contact, but this week I was emailed by the co-ordinator and given my first buddy. (Actually, I am the “buddy”. I’m not quite sure if the term for the “buddy-needer”, but it doesn’t matter)

They called last night and we had a very good chat for about three quarters of an hour. The co-ordinator tries to match people who would like to speak with a buddy to buddies with the same or similar experience and I have to say that they did an extremely good job this week.

The person who phoned had recently been diagnosed with the same kind of NHL that I have and is going to have their first chemotherapy in September, after taking a short holiday. What struck me about this person’s history was that it was very similar to mine, especially in one important respect. They hadn’t taken any annual leave at all last year and very little the year before.

Now, I have been going on about annual leave, working while on leave and the length of leave taken recently, but that’s partly because I too had a period a few years ago when I couldn’t take the annual leave I was entitled to. About ten years ago, I had taken a new job as a Director of an office and found myself in an incredibly stressful situation. Two of my colleagues left within three months of me starting and the finances of the office were such that I couldn’t afford to employ anyone else to take their desks. I ended up doing three people’s work and running the office too. I would work until half ten at night and at least one day of the weekend, just to keep up. That year I had about 6 days annual leave – if I did want to take a day off during the week, I would have to work the weekend to make up for it. My health definitely suffered (although I didn’t know by how much at the time) and I was glad to get out. It did take me just over three years though. So, now, I do make sure that I take all of the annual leave that I am entitled to each year and do my best not to carry any over.

My buddy contact had a similar story.

Now, as far as I am aware, there is no known cause or particular reason why any individual might develop lymphoma. It’s not a cancer that has a common cause, such as lung cancer, it just happens sometimes to some people. I also know that two people having a stressful job and having the same disease doesn’t mean anything statistically, but it was an interesting aspect of the chat we had last night.

What is also interesting is this story that was published yesterday.

The Stress and Cancer Link: ‘Master-Switch’ Stress Gene Enables Cancer’s Spread

So, I have made a decision. Sod the Blackberry. Sod the emails. Sod work. Next year, I will take a proper, two week holiday, without any of that crap. The world won’t end without me. It might even be good for my blood pressure, if nothing else.

And if you are reading this, and don’t take your full holiday entitlement, or work stupid hours at the weekend, think on.

Your children will thank you for it.

This is very worrying…

I picked this up via a Tweet from a group called @Hodgkintoday who pass on snippets and links to research in the field.

This early study links the use of Rituximab to an increased risk of melanoma.

http://www.karger.com/Article/FullText/350681

Now, there are side effects to pretty well any drug that you can think of, but it would be a supreme irony if one were to get a melanoma as a direct result of taking a drug to assist in a different cancer.

One to ask my new consultant next week, I think.

Working while on holiday (revisited)

With thanks to my friend AF for the link, here is an interesting article about the wisdom of keeping up with office work while on holiday.

Staff holiday – why it could be bad for business

I have posted about this before, while I was on leave, and it is interesting that professionals in the insurance and HR industries are thinking about the effect that this has on people.

Still deciding about two weeks next year, but I will take soundings from those colleagues who have been taking split weeks as well as those who have completely left the office behind for two (or more). What I have noticed is that some of the more senior staff within the organisation do tend to go completely off radar while on holiday as do those who read The Guardian. Maybe I need to reconsider the Blackberry in the bag next time, or at least have the email function switched off.

On the other hand there are others with whom I work who refuse to check emails while on leave, then complain that it takes two weeks on their return to catch up with themselves, while in the meantime, decisions get undecided and progress on projects slows. And their stress levels get turned up to 11.

What I did notice myself, having been keeping up with emails, is that I didn’t really feel that I got the best out of my holiday.

I don’t think that there is any easy answer and I don’t think that there is a right answer. But keeping the balance right is the important thing.

Decision time then…

In the past week I have been doing some research into the availability of haematologist/oncologists in the North West. So far I have been concentrating on the Chester/Wirral/Liverpool areas, but I think I might have to cast my net a little wider, so as to include the Christie after all.

There are very few of them about, if truth be known. I have asked the advice of the BUPA liaison company at work (we are not allowed to talk with BUPA directly) and they have come up with a name in Liverpool who I need to investigate further. We found one in Chester, but she’s recently retired and the name of the guy from the Wirral who couldn’t/wouldn’t see me for two months when I was first diagnosed was also suggested. I turned him down. What I need is someone who works in both private and NHS clinics again.

I have been offered the name of a specialist at the Royal Marsden in London, but the thought of having to go there to see him on a three monthly basis and worse still, have to go there and come back after treatment, really is a bit of a non-starter.

So, I will look into the Christie in a bit more detail.

I met with a friend for a coffee in town on Monday and, while it was a warm day, my face was absolutely dripping with sweat when I arrived at the rendezvous. I’d only walked about 300 yards – this is not a great sign. The radiologist that I saw in 2009 questioned me about a very similar incident when I was in a consultation with him, and within 3 months I was in the electric chair. All needs to be watched carefully.

I will gather all the information that I can and see if I can make contact with a new person this week, with a view to seeing them before the end of August if possible.

The reason for this “urgency” apart from the blog entries below? Well, I if I do need treatment soon, I want to be in the care of someone who cares and with the lymph node “feeling” still there, it might be sooner rather than later.

In other matters, a trip to see Roger Waters’ “The Wall” is coming along soon, as is the Wetzlar photographic trip, to include a week in the Bavarian Alps afterwards. The last holiday seems like a long time ago (in truth only five weeks) but October is a fair way off. Maybe I can take a few days off in the meantime.

I sold my Hasselblad (body) this week so now need to dispose of the lens and the Lee filter system that I bought to go with it. I enjoyed using the camera and loved the magic look of the photographs that the medium format produces, but I wasn’t using it very often. Even on Islay this year, I only took three photographs with it, so when the person from whom I bought it expressed an interest in buying it back, I said “OK”. Maybe if and when funds allow, a MF digital camera might be the way to go, but until then, I will stick with the Leicas and the Nikon.