Sunday, 19 December 2010

My dog died this week

I will have to wait a while to write anything about it, but she has left us with a huge dog-shaped hole where a little dog used to be.

Thursday, 9 December 2010

A frustrating day

Having received the call from the Consultant last night, I phoned the hospital this morning to confirm that I wouldn't be needing the appointment at 9 am. They confirmed that I was booked in for an "Open Appointment", which allows me to arrive late in the afternoon session.

During the morning, I called the Consultant to see whether we were still OK for this afternoon, only to be told that he hadn't been able to confirm with the hospital authorities that the nurse who has now offered to stay this evening would be paid overtime for her efforts. I told him that if necessary, I would pay her cash for staying behind so that she would be sure of being paid. He asked me to leave this with him until lunchtime when he should have been able to speak with the finance authorities to confirm.

He called just after lunch. "Yes, everything is fine for this afternoon. Please come in at 4:30"

That's progress...

5 minutes later - phone rings again. "Sorry, just had a call from pharmacy to say that their drug making machine has broken down and they won't be able to mix up the drug for you this afternoon".

Good grief. This is now getting beyond a joke.

He then told me that he would be trying to find someone to help us out so that he could give the treatment to me before Saturday lunchtime. Obviously I told him that I would make myself available at any time, but it really shouldn't need to be like this.

Why he couldn't have just filled out the bloody form to make a special case to the Finance Department to have this done under the NHS, I don't know. This is just ridiculous.

Finally, at around 5pm, he called me to confirm that I should attend at 4:30 tomorrow afternoon. He has got one of the nurses to stay behind on a Friday evening to help me out.

So, let's just hope things go more smoothly tomorrow. I will obviously have to attend straight from the office (having been to a meeting in Liverpool ion the morning), but at least it will have been done.

Fingers crossed.

PS - the treatment is slowly going through NICE, so hopefully by the middle of next year, all this will be a thing of the past. We will see...

Wednesday, 8 December 2010

Problem...

The nurse who gave her time (or that should be "sold" her time) two months ago so that I could have this treatment out of hours cannot do the same again tomorrow. I have just had a call from the consultant to say that he found this out about 5:30 this afternoon. This is not helpful.

So, tomorrow morning, he's going to have to see if he can find another nurse to remain behind, or even ask one of them to come in specially on Saturday morning. Unfortunately, he's off to Hong Kong for Christmas on Saturday evening, so this is all looking very pear shaped at the moment.

If we can't do this before Saturday lunchtime, it will be after Christmas before we can do it. That'll be the week when we are going to Scotland with Rebecca.

To be honest, I can't think of a very good reason why we just can't do this in the BUPA hospital and have done with it. It's only giving someone a drug in a bag of saline after all.

Not happy.

Tuesday, 7 December 2010

Blimey. Nearly a month since the last one.

That must be good news.

This week sees the second of the maintenance doses of Rituximab and so far so good with this. I have had a cold for a week, that's proving more difficult than normal to shift, but that's to be expected. So, off to the Countess I go on Thursday. It appears that I have two appointments - one at 9 am and one at about 4 pm, so I will just go along with the flow and see what happens.

It was the Christmas meal with the Lymphoma Support Group yesterday. A very good meal indeed, I have to say and it's good to chat with people for longer than is available during normal meetings. It turns out one of the members worked for years with the father of one of my friends from school - the school is 200 miles away from Manchester. It's a very small world.

Another one of our party is currently going through her R-CHOP session - she's on 6 out of 8 sessions. Her hair has fallen out etc. Unfortunately, it's only 2 1/2 years since her R-CVP session, so my thoughts are with her, and I hope that what we are doing over the coming months lets me have a bit more time than that. She is on a trial of Gaudi, "son-of-Rituximab" as part of the R-CHOP (or should that be G-CHOP?), so let's hope that does the trick. According to the fellow last month, the results are looking promising.

Had a flu jab at the GPs a couple of weeks ago. As I was putting my shirt back on, I mentioned to the practice nurse that I have NHL (which she would have read in the notes anyway of course), and she then offered me a pneumonia vaccine. Protects against 23 different strains of viral pneumonia apparently - for life, which is handy. Maybe this is why I have had the cold...

I do get more tired than I ever used to though. Or that might just be because I'm about to enter my 50th year... who knows?

Very busy at work. The big job looks like it might actually be getting somewhere this year, so next year could be extremely busy. Lots to do if we get over the Christmas hurdle.

Can't say I've been very impressed with the very cold weather. It's only got down to minus 7C here, but other places in the NW have been down to minus 12 or more. Our road has been a sheet of ice for about 10 days now. Both yesterday and today it took me about 2 1/2 hours to get to work (yesterday Blackpool, where it was snowing heavily - most unusual) and today in Salford. Just insane traffic today. In all my years of driving it never ceases to amaze me how traffic can be completely stationary for miles, yet there appear to be no reason why - it just seems to clear by magic for a couple of miles and then come to a standstill once again. Something to do with wave theory, I think.

I have found a very interesting family present for Christmas (well, I think so, anyway). I won't let on what it is, of course, but it will be good to use it on Christmas Day. It's unusual - that's all I'm saying. Should be delivered this week with any luck.

Apart from that, I've taken hardly any photographs in ages, what with the miserable weather and this cold. But the book is coming along... so that's OK.

Saturday, 13 November 2010

Steady as she goes...

That's it really. Settling into a new rhythm of on-going treatment. It's now half way through November, so I have another dose of Rituximab in about three week's time. So far so good - I am not expecting any obvious side effects (because there aren't any to speak of), but am on the look out for non obvious ones.

Principally, people receiving this treatment might get 4 or 5 times as many colds and other minor infections as someone who doesn't have a compromised immune system. Given that this is now the time of year when these things become more prevalent, I have reverted into "don't get swine flu" mode, by being careful who I stand next to on the tube, avoiding people with obvious colds, using a hand rub (for what that's worth) and so on. As I said, so far so good.

I haven't been invited for a flu jab yet this year though, which has surprised, me. Maybe I should call the GP during the week.

Attended a meeting of the Lymphoma Association for the first time in ages on Wednesday last week. I have missed the last few meetings due to work commitments, and it was very good to catch up with people there. Indeed, it's good to see people still there! There was a very good talk by one of the clinical research doctors from the Christie Hospital this time and it's great to learn that there are drugs and treatments coming along that are second and third generation monoclonal anti-bodies that are promising to be more effective than Rituximab is. Maybe that's what will be in store in the future.

On the same Wednesday, I went to a presentation of the Leica Book to members of the Blurb community in London (Blurb is the publishing house that prints the books). Bill Palmer had put the PowerPoint together and asked me whether I would offer some "wing man" support while he did it. Although it wasn't as well attended as we had hoped, it was an interesting lunchtime. So far we have sold around 240 of the books and the total raises is well over £10,000.

What else has been happening? The judging for the Venice competitions is ongoing - if closes on Friday. I'm not winning this year, but I'm not losing either, so that's fine with me. There are some interesting entries this time round and the Night Challenge was a great idea. I will post my two shots here when the judging is finished.

Still trying to plan what to do for my 50th next year. When I see my haematologist next month, I will double check with him about foreign travel (especially outside the EU). If he says it's OK, then I think that taking the plunge and going over to New England could be a really interesting couple of weeks. I do fancy watching some whales. Let's see.

Rebecca has bought her round the world air ticket, so three of us could be away at the same time. That could be interesting!

Now that the nights have drawn in - it's got beyond "drawing in" - I might think about putting together an album of my own stuff. I just started having a play with the Blurb software today and I have also downloaded an alternative that I might try out. Could be an interesting exercise going through all my old shots, rescanning and reprocessing to get them right for a book project. I will keep posting experiences here.

Sunday, 24 October 2010

Loads of new stuff on my website today

Have spent the afternoon scanning photos from Venice

http://www.andybarton.com

Friday, 22 October 2010

About time for an update

Lots has happened since the last post.

The Black Country Museum is an odd place - more so when it is absolutely tipping it down all day. Maybe one for a Spring visit - or maybe not. Picked up a couple of interesting shots though - I quite like this one.



On the Thursday I attended the hospital at the close of business and one of the senior nurses and the consultant stayed behind for a couple of hours to give me the Rituximab. He hasn't quite sorted out the payment situation for this yet, but I am sure that by the time the next round comes along in December, that side of it will be done.

It was actually very pleasant sitting there chatting to these two on a one-to-one basis (if that makes sense!)

The following week, we had off as leave, ready to go to Venice for the Leica "One Challenge". Drove down to my parents' house on the Tuesday and had a very nice lunch in the Flowerpot at Aston, near Henley. First pint of Brakspears for a long time. Then on the Wednesday, we went to an open-air museum near Chichester. More interesting than the Black Country, although the miller could talk for England. Fortunately, we were saved from a gristy end by a party of 9 year olds and were able to make our escape. Lunch in The Lanes in Brighton - I might need to get back to the car park with my car-park consultant some time - followed by a walk along Beachy Head.

What a very unpleasant place that is. I found myself looking at anyone walking along the headland thinking "Are they going to jump? Is he? What about her?" I knew that there is a chaplain who patrols the head, but it's quite sobering when you actually see him in his red car with the yellow flashing lights. The floral tributes, 20 feet away from the car park and 6 inches from the drop are pretty grim too. All in all, not a nice place.

Then, onto Gatwick and a flight out to Venice on Thursday morning.

The weather there was fabulous and we had a very good weekend staying in an apartment owned by a friend of our Norwegian friends. This place was only 5 minutes from San Marco, so very handy. The wellies were handy for the high tide on Sunday morning too :-)

Friday's dinner was in the place where we went on the last night of our previous trip. Very friendly indeed and good value "for Venice".

The Challenge was very well attended and the meal (for 30) that I organised on the Saturday evening was very good.

All in all a very good weekend.

Now, to find two photographs worth entering. The night time one isn't too hard, but the day shots just wouldn't come. Oh well - there's always next year!

Saturday, 2 October 2010

BUPA to the rescue

Well, not exactly the rescue, but BUPA have agreed to pay for the ongoing treatment. Excellent news. I am feeling a little like a guinea-pig, though, as the regime that we are now going to pursue is one of a session every other month for two years. It seems that there are various ways that the Rituximab is given for this purpose (including six doses all at once, once per year, which sounds a bit drastic), so we are going to go down the middle road.

A slight complication is that in an ideal world, the best place to receive it is on the Ward in the NHS hospital where they deal with this all day every day and where I received the treatment early in the year. However... BUPA cannot pay for treatment during a normal NHS clinic. So, my haematologist is currently negotiating with a couple of the specialist nurses with regards to some overtime so that they can slot me in at the end of the session. I haven't heard anything from him yet (what's new), but I anticipate a call on Monday to confirm that it will be after clinic on Wednesday next week. I can see that a couple of bottles of red are going to be required a s a special thank you to these nurses...

While I was with him on Wednesday this week, I saw the CT scan images done on Monday. There certainly seems to be much less disease than even in the mid-treatment scan, so that's good news too.

Off to the Black Country Museum tomorrow for a wander and a look-see, so hopefully the weather will hold.

Sunday, 26 September 2010

Back to "business as usual", in more ways than one

So, back at home and work for a week now. If things go to plan in the coming week, we are going to be extremely busy getting my main project to a milestone at the end of the year.

I say "project", but I really mean at least 4 projects. So, from being relatively quiet for the first six months of this year (which has obviously been very beneficial given the road I have travelled), the last three months could well be manic. I hope so - it's been over 4 years getting to this point on this scheme and it's about time that we were in a position to be able to move things forward. It's a difficult time for our partners, though, so we need to be mindful of their plight as we move forward.

It's also back to business with the treatment. Whilst I still haven't heard from the consultant - nothing since I spoke with him back in August - I will be seeing him on Wednesday. Before that, tomorrow in fact, I have another CT scan. I ought to count them up via the entries into this diary, but I reckon that this must be at least the sixth scan now, plus the PET scan. If every CT is worth 400 chest x-rays, I'm now looking at 2,400 chest x-rays, plus the PET scan, in the last 15 months. That can't be very good for you in itself, but the scans are needed to check on progress with everything, so "hey ho".

I should be able to find out about the funding for the maintenance, or not as the case maybe. Given the doubt about even the licensing of the Rituximab for maintenance, I am less hopeful than I was before. Some good news is that an EC committee has approved it for this use only last week. While this has no direct bearing on policy by NICE over here, given that they are to consider it for this use over the next 9 months, this must be a positive sign. All the people I have spoken with in the NHS and NICE about this have been most helpful, so I am very grateful to them. At least I can find out some of what is going on with this treatment in the wider context, even if my consultant isn't the one who is telling me...

I will do an update after Wednesday.

Skye is now fading into memory, but I have had some fun over the last few days either processing the last of the film, or scanning the Hasselblad slides that came back from the processor at the end of the week. A 6x6cm slide is really something else (4x5 inches is the next step up :-) ) and there are a couple that I have been pleased with. They are on my website if anyone wants to have a look.

Next thing is Venice in just under 3 week's time. Should be a good do - we have 22 confirmed for dinner, so it's getting to be nearly as popular as the Berlin meeting three years ago. Will have to go through my old slides from Venice and see what's a likely candidate for a re-shoot!

Then, autumn and winter set in. But, the tour round France/Italy/Switzerland/Germany/ Luxembourg/France won't organise itself. That's going to be pretty tricky to get everything sorted. There's a lot of ground to cover, and we don't want to spend an entire fortnight in the car, so rather than visit a lot of different towns during the time we have, it might be better to find 3 or 4 bases, where we can spend a couple of days in each, before moving on. Lots more work needed there, I think. But, it needs sorting as small hotels, such as the ones we have been looking at, get full very quickly.

So, an early night is in order. I think it's "nil by mouth" before the scan tomorrow morning, but I'm sure a cup of tea won't hurt...

More on Wednesday - if there's anything to report.

And finally, our thoughts are with Jan W, who has had some surgery for breast cancer this last week. Let's hope that there's very good news on it's way to Jan very soon.

Sunday, 19 September 2010

Skye

Got back from Skye yesterday evening. 9 hours in the car, 8 of them driving. It's quicker to go to the US.

Proper update later in the week.

Thursday, 2 September 2010

No news is..

... no news.

Still no word from my haematologist, despite almost daily emails, phone calls and me sending him information regarding the PCT, NICE, etc.

The project manager at NICE, responsible for guiding through the approval of Rituximab as maintenance for people like me wasn't very encouraging yesterday (but at least he DID phone back). He was suggesting that the drug isn't even licenced for this use, let alone approved. Approval will take until next Summer, if everything goes according to plan and NICE approve it - that's by no means certain.

All in all, very frustrating and not satisfactory.

I have a meeting with my GP later this afternoon, and will start to explore alternative consultants, including seeing whether a transfer to Christies in Manchester would be possible. They are a large teaching hospital with the biggest and best oncology department in the North of England. Maybe they would be more able to access these new treatments.

Who knows. I certainly wouldn't be any worse off than I am now.

Monday, 30 August 2010

A grand day out and "Doing It Oneself"

The weather forecast wasn't brilliant yesterday (Sunday of the Bank Holiday weekend), but we decided to go to Llandudno for the day regardless. It absolutely tipped it down on the A55 - a proper cloud-burst. Very unpleasant. But by the time we'd come down from the Clwydian Hills and towards Colwyn Bay, things brightened up a bit.


Llandudno is an odd place. It pretends to be quite up-market, but scratch the surface and it seems to appeal to the same demographic as most of the other north western seaside towns. Only, here, all of the tat and the burgers are restricted to a narrow strip at the western end of the north beach. The actual prom is pretty dead, with a wide walkway and lots of 3-Star hotels fronting onto the road. All the activity takes place one block inland - presumably to keep away from the on-shore winds - which were pretty strong yesterday.



After an hour or so of that, decided to head over to Anglesey (second time in a month!), and go to South Stack, beyond Holyhead.  A busy spot on top of the headland, but a great lighthouse on a smaller island, accessed (in good weather) by a foot bridge (closed yesterday). This place is so far west that the mobile phone service is provided via Ireland... Definitely worth coming back to when the weather is a bit less clement - would be great with some incoming clouds or a storm. One to remember. Came back via Beddgelert. What a lovely little spot - again, one to come back to when the hoards have all gone home. And finally, a quick stop to grab a shot of Snowdon from the usual spot at Capel Curig.




Have done some investigation into how PCTs work, particularly with regards to providing funding for drugs and therapies which are NOT NICE approved. Having spoken with the finance department of the PCT, it is possible to do this, on an individual basis, so I have provided all the information I could find to my haematologist. I will be very disappointed if I find that he hasn't already started to do this himself, on my behalf. It seems to me that you have to take charge of these things yourself if any progress is to be made, as others don't have the same sense of need that you do. Despite several emails, my haematologist hasn't come back to me about progress on this, or the Bupa application yet. A "gentle" reminder is in order, I think.


Been a cracking day today though - let's hope that this is settled now for 3 weeks. Somehow, I think that might be wishful thinking ...

Tuesday, 24 August 2010

Struggling

I have emailed the haematologist a couple of times but have had no response from him as yet - nor his private PA who has been very good in the past.

This morning I spoke with his NHS PA, and asked her whether she knew if he'd been in contact with Bupa yet. She did not know, but she did confirm that he has written to my GP informing him that he has now taken me back onto his private list. I suppose that's something at least.

I advised the NHS PA, as I had done the private one in the emails, that I am on leave as of Friday next week, and would really appreciate some progress on this before I go away.

I have also made an appointment to see the GP before I go on leave, to update him on the situation and see if there is anything that he can do to help. But, as always, you can't get to see him until the middle of next week (literally).

I will continue to pester my man until I get an answer from him. If Bupa can't help, I will be seeing my MP at the first surgery he has on the new term...

I did an inventory of my film at the weekend, in readiness for the Scotland trip. I have 2,700 frames in the freezer - mostly black and white (Acros and Delta 100), but a lot of Astia too, that needs "shooting up". So, we're probably all set in that department.

I'm not sure how long it will take to process that lot, but it will keep me quite for a while... I will need to buy some more chemicals, especially for the slide film Note to self to sort that this week.

Apart from that, I'm just trying to work out how to find £666 per month for the next 5 years...

Thursday, 19 August 2010

Bad news

Disappointed, but not very surprised, sum up my feelings up really.


After waiting nearly an hour and a half beyond my appointment time, I saw the haematologist yesterday and he had bad news for me. He has not been able to persuade whoever needed persuading that I should go on the Rituximab maintenance. Indeed, he said that his colleagues thought that he was mad to even suggest to me that this would be even an option.

Apparently, the Rituximab is licenced for use in my circumstances but has not been approved by NIHCE for this purpose yet. They may be making a judgement in November, which on the face of it sounds positive. BUT (big “but”…), they would be approving it for maintenance use starting three months after the end of the initial 8 session course of treatment. By November, I will be 4 months post-treatment and will not therefore qualify.

Bugger.

So, I am now in discussion with BUPA to see whether they will pay for the maintenance. One other slight problem is that the recommendation is now no longer one course of Rituximab every quarter for two years, but for five years, i.e. 20 treatments. At around £2,000 per go, we are talking forty grand’s worth, over the five years. BUPA have asked for a full report from the haematologist with details of my condition, the R-CVP treatment that I have recently completed and why he considers it to be in my best interests to have the maintenance. Given that this treatment needs to start at the beginning of October, he needs to get his finger out and get the report to them ASAP.

I mustn’t forget that the maintenance isn’t without its side-effects – people who are on the Rituximab for long periods tend to be more susceptible to other infections for example, as the white blood cell count is depressed by the drug, but the long term benefits are very positive in overall terms. Given that the maintenance regime has now gone from two to five years, I was wondering last night whether we are working up to a situation where a dose every quarter, for ever, is an effective “permanent” solution to keeping the disease under control. I am sure that by the time five years is up, someone will have done more research and a better picture will have emerged.
So. Until I can get an answer from BUPA, I am a bit in limbo.

I could be really selfish and cruel and mention the treatments that I have seen being given to frail old people in their nineties, whereas I am a “fit” 49 year old with another 17+ years of paying taxes to go yet, so where do the NHS’s priorities lie, but I won’t. If that old person was a grandparent of mine I would want them to receive the best of appropriate treatment too.

It’s just that I also want it for myself.

Maybe now is the right time to downsize after all. Let’s see what Skye brings in a couple of week’s time.

Tuesday, 17 August 2010

Off to see my consultant tomorrow

Having had a few weeks off from going to the hospital, tomorrow sees me back there for a follow-up with the haematologist.

I am hoping that he can confirm whether the maintenance is available to me, but we will see.

I have another CT scan to look forward to next month, and I'm surprised that he didn't want to see these scans before seeing me again, but I'm sure he knows what he's doing.

Tuesday, 3 August 2010

At Leica in London

Had a very good lunchtime today with David Bell and Jenny Hodge from Leica UK and Dr Eric So of Kings College London, who accepted the "cheque" on behalf of AICR, the charity that we have been supporting. Bill Palmer, also of the Leica USer Forum was there too.

Thanks again to Leica for all their support - we have raised over £10,000 for the charity, much more than we ever thought possible.














This is me, David, Eric and Bill Palmer at Leica in London this lunchtime.

Yes, my diet starts tomorrow...

Saturday, 31 July 2010

Cheque handover to AICR is on Tuesday

Regular readers will know that as part of their support for the Leica User Forum Charity Book, via their Twitter account, Leica generously offered to give €3,000 to the charity.

The handing over of the cheque by Leica UK MD, David Bell, takes place in the flagship London store on Tuesday, so I am taking the day off to go down and watch. It's going to be a very good afternoon :-) Through the efforts of everyone involved, we have raised over £10,000 for AICR, which I reckon is pretty good.

We are already thinking about ideas for the next charity book, which we will do next year when this one has died down completely. We will try and get that one finished for Christmas 2011.

All encouraging stuff.

The Venice Menu

Well, I have made contact with the restaurant (Sorry if you're reading this Andrea, but we needed to crack on, so Google had to do - thanks for the offer of assistance anyway - the cheque's in the post! ;-) )

The restaurant that I had in mind can accommodate us all for the 16th October and they have kindly sent through two sample menus for us. The one with the better choice, to my mind anyway, is this one, the €28 menu.


One thing that I did find a little odd was that they seem to be expecting ALL of us to choose exactly the same thing from the menu. In their words "il menù gentilmente deve essere scelto uguale per tutto il gruppo (please choose one of the alternatives for the whole group)"


I have asked one of our party, who speaks Italian, to assist me in persuading them that if we advise them of the numbers for each dish, before the end of September, then that ought to be OK. I can't see too much of a problem with that, to be honest.


So, that's another thing (nearly) sorted :-)

Primo piatto:
  • gnocchi alla rucola (gnocchi with rocket salad and creame sauce
  • pasta alla carbonara (pasta with beaten eggs, bacon and cream
  • lasagne di ricotta e spinaci (lasagne with ricotta and spinach)
  • risotto con salsiccia e porcini (risotto with sausage and mushroom)
Secondo piatto:
  • fegato alla veneziana (calf’s liver with onions)
  • ossobuco alla cacciatora (veal shank with mushrooms
  • petto di pollo alla rucola (breast of chicken with rocket sauce)
  • spezzatino di manzo (beef stew)
Contorno:
  • contorno del giorno (vegetables of the day)
Dessert:
  • dessert
Acqua
  • ½ litro
Il vino non è compreso:  ¼ vino: + 2.50  (the wine is not included)          

Wednesday, 28 July 2010

I finished the last of my drugs this morning.

Today would have been a day in the chair, as it’s Wednesday on a week 3, but of course, I don’t have to do that any more. The first week 3 Wednesday since early February that I haven’t had to. I miss it in an odd way. It was actually quite good to be forced to sit and not do anything for a whole day, despite having to be plumbed in.


Now, of course, it’s back to work full time again, without having a few days to recuperate every three weeks. Better that than being ill, though.


Now it’s time to start thinking about what to do with the rest of my life. I need to have some serious thinking done by Christmas, I reckon. Maybe two weeks on Skye will be an ideal opportunity, who knows. Much depends on many things, though, especially the economy and how bad things are going to get. We still have a mortgage to pay, after all.


It must just be the 50th Birthday thing coming up next year that’s got me thinking like this. I wasn’t like this 10 years ago, but then we still had two children at home and you can’t afford to start thinking like this when you just have to get on and do stuff. Now, maybe, I can.


However, the big question must be “What do you want to do? What would you change in your life if you could? How would your life be better if you did change it?”


That’s three questions. Let’s tackle the first one first and come back to the other two if they don’t get answered by the answer of the first…

Sunday, 25 July 2010

Venice 2010

Just starting to try to organise a dinner for 30 people (maybe more) in Venice in October, preferably for €30 per head (or less)

Going to be interesting :-)

Thursday, 22 July 2010

So. Another birthday has been and gone

Big one next year, so had to make the most of a little one this time round.

"I've never been to Birmingham"

"Erm... fancy going tomorrow, on my birthday?"

"OK"

Went to Gas Street Basin, the heart of the Birmingham Canal Navigations and a place where I'd spent the night on a narrow boat listening to ghost stories when I was about 14. It's changed a bit since then. The ghosts have gone and urban re-generation has arrived...


I don't know if you can read it on this size image, but it's good to see that "Legs 11", a lap-dancing bar with "the best showgirls in town" is located in the white gabled building towards the right of the shot. Gas Street hasn't lost all of its charm :-)

Brindley Place, next door, is a great example of what can be done with an inner city run-down area. But, it's still Birmingham. Frankly, my least favourite city in the country. You can't even get a proper cup of coffee round there on a Saturday morning. Still, been there, done that, no need to go back again.

Then we went on to Bournville to have a wander round the Cadbury village. Very interesting it was too, especially since we were there at noon, when the carillon started to play. On making enquiries at the visitor centre, we were soon on our way up the bell tower to see Trevor Workman giving the wooden pegs some serious stick. His photo is "photo of the week", and can be found on my website if you're reading this when that accolade has passed on to another photo. A fantastic skill, and definitely well worth a visit if you are in that area on a Saturday morning.

After a spot of lunch there, we ended up at the lavender farm at Snowshill, near Broadway once again. It was absolutely packed with japanese tourists this time round, but I gave the Hasselblad a walk, and we will see how they turn out one day. It's a lovely spot there, I have to say.

Then, back home and a supper at the Marsh Cat.

Not a bad birthday at all.

And in the new car as well :-)

Now, we can start planning new year's jaunt in earnest. It's going to be good.

Monday, 12 July 2010

Sunday, 11 July 2010

That's finally over then

No, not the World Cup - that's not over until later this evening. I want Spain to win, with the winning goal scored by Fernando Torres - if only because it might push his price up by £10m over the summer when he leaves Liverpool...

My 8 sessions in the electric chair came to an end this week. It will be strange not having that as part of my routine, going forward. Those three weekly visits came round very quickly - even just taking the daily tablet and watching them going down in the box showed the passage of time between one session and the next. No more Prednisolone for a few years - that's something to write home about.

Had a good chat with the haematologist on Wednesday. He wants me to have another CT scan in a week or so, so that he can see exactly what's left and what stage the disease is now that we have done this treatment. Notwithstanding what the radiologist said last time, I can still feel something in the groinal node where I first felt the problem back in May last year and I will discuss this with the haematologist when I go for the consultation post CT in August. I have to say that I will be pretty pissed off if this hasn't made the difference that I was hoping a couple of weeks ago. He also "sort of" back-tracked a bit on the Rituximab maintenance going forward over the next two years. It sounds like he is going to have to pull some strings as there is now some question as to whether they can count the radiotherapy that I had last year a "first treatment", or whether I am officially now in my "first" remission, rather than second. There is evidence that the maintenance is effective during first remission, but some question as to whether it is an approved treatment under the NHS. If it isn't, then I don't know what the options are - I doubt whether BUPA will pay for it. Will have to wait and see.

Other stuff feels better though. I even had a reasonable night's sleep last night, but I was completely bushed on Saturday afternoon, and absolutely needed the two hours sneaky shut-eye that I took.

My birthday is next weekend and I think that I can look forward to that, and beyond, with a bit more confidence than I did last year, when I was just opening this particular chapter of my life. While I don't think I will ever be able to close the chapter, I do think that a couple of pages have been turned, which is good.

So, now we're looking forward to the rest of the summer back in the office full time again (provided it's not as hot an humid as it has been the last week). We have Skye to look forward to in September (must get some filters sorted out for the Hasselblad...) and then Venice for a few days in the middle of October.

For my 50th next year, we have decided to take a fortnight's drive round Europe and have started the planning already. We are going to try to find interesting b&bs to stay in - if we can find places like that we found in Normandy last month, I will be more than satisfied. I have to say that, judging by the books that we have been browsing these past few evenings, there are some great places to stay, at very reasonable prices, in France and Italy. The German book is coming this week, so then we can start to plan in earnest. My friend Ravi has offered us a room for the night in Switzerland if we can organise it, so that's one night sorted!

Itinerary likely to be along the lines of Millau/Portofino/Italian Lakes/Switzerland/Black Forest/Rhine/Moselle/Champagne/Home. Should be OK :-)

"Accidentally" bought a new car on Thursday. We only called into the show room for a look and a test drive, but ended up buying a new Golf. We were in there nearly 4 hours all told - and I think I suffered for it over the weekend. Got a very good deal on one, I have to say, so I'm pretty pleased with that. Should be able to collect it on Wednesday, when I have to go to Stratford-on-Avon, which will be a nice run out for it.

Tuesday, 29 June 2010

More excellent news...

There has been some more excellent news this week too.

I had an appointment with the Consultant Oncologist who was in charge of my radiotherapy treatment last autumn. This was a routine follow-up appointment just to check on progress etc, but he is also part of a clinical team with my Haematologist, so has the fuller picture of what’s been happening over the last 6 or 7 months.

He gave me the usual prod and poke around the lymph sites in my neck, armpits and groin and I am pleased to say that he couldn’t find any swollen nodes at all. This means that the treatment is working. Which is, as I say, excellent news :-)

"I never want to see you again", he said, in the nicest possible way. To be honest, I never want to see him, either, but I am glad I met him.

Unfortunately, it’s not possible to feel the nodes in the abdomen area, so I may need to have a further CT scan after next week’s treatment to check on what’s been going on there. Furthermore, this doesn’t mean that I am cured.

What it does mean though is that, subject to attending for the maintenance treatment over the next two years, I can look forward to maybe 7 years before I need to have something similar.

I am quite pleased. Not that I ever doubted that this would work, of course.

Now, I’m going to have to think of something else to write about – I’ve enjoyed doing this blog over the last year or so – it’s good to write things down and very interesting (to me at least) to go back and read posts from a while ago. As I have said before, it seems a lot longer than it really has been – so much has happened really and it’s easy to forget what you’ve been through.

Oh, and England were woeful in the World Cup. Why am I not surprised?

Some excellent news!

A press release from Leica Camera was issued today:



Fundraising on Twitter for Leica enthusiasts’ charity initiative

Starting on June 30, 2010, Leica Camera AG will donate .50 Euro to the UK based Association for International Cancer Research (AICR) for every new follower to Leica’s Twitter account. Leica will donate an extra 1,000 Euros to AICR upon reaching 10,000 followers by July 9,2010.

The charity project for the benefit of international cancer research is part of an initiative that was launched by Leica enthusiast photographers who met on the independent International Leica User Forum site . Cornerstone of the project is the Leica User Forum Charity Book 2010, which is available through the online publishing company Blurb. The book is 140 pages long and offers a broad variety of images made by 101 Leica Forum members. A significant donation from the participating photographers as well as 6 Euros of the 95 Euros sales price will benefit the AICR. More than 9,000 Euros have already been raised.

Leica Forum member Bill Palmer, who came up with the photo book idea, said: “We simply wanted to showcase the talent of the photographers on the forum, whilst simultaneously raising money for a good cause. The response was overwhelming, both in the number and quality of images submitted from contributors worldwide.”

Norman Barrett, AICR’s Chief Executive said: “This impressive work of photo aficionados will provide essential income to help us help scientists across the globe in their efforts to understand and answer some of the most complicated questions in their field.”

Leica Camera Chief Executive Rudolf Spiller also commented: “I am delighted that we can contribute to an initiative that perfectly illustrates the spirit of the Leica user community. The project combines social responsibility, creative excellence and dedication to Leica cameras and lenses. Our customers are the best!”

Monday, 21 June 2010

Potatoes

The crop from our first potato pot.

Should be good eating later :-)

Sunday, 20 June 2010

Back from Normandy

We were _supposed_ to be going to Oxford last weekend for a couple of days. We'd booked into the Malmaison on a very good deal for Sunday and Monday night and had intended to leave the dog with my folks in Maidenhead. Well, the second part of that plan worked out.

A week before we left we were talking about what to do for my 50th Birthday next year and got down to two choices. 1. New York for a few days or, 2. A drive round Europe to take in the Italian Lakes and the Millau Bridge (see blog post from last year about "Bucket List"). On one Thursday evening, Ann suggested that we could go to Millau _that_ weekend, i.e. in the morning. (It's only 900 miles from where we live...)

But, that got me thinking on the way to work the next morning, and so the Mal was duly cancelled and the ferry and a hotel/b&b in Normandy booked. We had been let down by Expedia, as it turned out. The place I had booked on the Friday lunchtime had become full by the time I got home, but they were very good, and found us a fabulous b&b at Chateau Flottemanville nearby. €80 per room, including breakfast - and it was superb. Here's a photo of the front on the Chateau, which has been in the family, thick and thin, for around 700 years. Our room was in an annexe over to the left, but a very short walk into the main house for breakfast. Very quiet, very comfortable, very reasonable. Will definitely go back next time we want to visit Normandy.

We'd never been here properly before. I visited with friends from school while on a tour of France about 30 years ago, but we didn't do the beaches (only Bayeaux, which is about 10 miles from the coast - stupid boys!), and this time we went with the intention of seeing all the D-Day beaches.

These are really moving. Omaha Beach, with the huge American Cemetery on the cliff above, and especially Pegasus Bridge, where the British Paratroopers first landed.

Highly recommended to anyone who hasn't been.

On the Monday, we toured the north and west coasts of the Cherbourg peninsular, which is both very beautiful and interesting, even the nuclear reprocessing plant which seems to be about 2x the size of Sellafield. We did find (following a tip in one of the guides) a fabulous small restaurant called  Le Moulin a Vent right on the north coast, about half an hour west of Cherbourg, where the €23 set menu was fantastic. Excellent value for money, even with the poor £/€ exchange rate.

Got back home on Tuesday night, ready for another session in the chair on Wednesday.

There is now a large light at the end of the tunnel, with the final session (before maintenance) coming up in 2 week's time now. It's actually going to be quite odd not having this series of events to "look forward to", and having my life back as my own again. On the other hand, subject to the sleep deprivation and other chemically induced issues, it will also be strange going back to work "full time". I know what I'd rather be doing though...

Started looking round for a new car today. BMW and Mercedes were interested in selling me a car. Audi weren't even bothered whether they spoke with me or not. Thos first impressions make all the difference. guys... Mine has now done 76,500 miles, in the two years I have had it. It will be interesting to see what MB come up with.

The Leica Book has now sold around 130 copies and there should be some very exciting news to report about next time (which will not be as far away as this time was ;-) )

So, things are looking up for the Summer.

Thursday, 3 June 2010

The Leica User Forum Charity Book is now available for purchase

For every book sold, £5 goes to the AICR charity, to add to the £7,200 we have already raised for them.

This has been a great project and a very worthwhile cause.

Warm glows all round :-)

Saturday, 29 May 2010

The proof copy of the Leica User Forum Charity Book has arrived

And pretty good it looks too :-)

There are a few typos that can be corrected over the weekend and then we will be ready to tell everyone about it.

Have to say that we have been having second thoughts about launch parties. It's actually pretty difficult to find suitable venues, particularly at a suitable price, so we may just have to launch "on line". I think that a final decision on this will be made over the next week. It's a shame, but there are some things that need more time and effort than any of us can afford to donate at the moment. However, we do have one of the two paper copies in existence going to the Forum Meeting at Zingst in Germany next week, so a lot of people will be able to see this proof copy there.

We will also make sure that we tout the other copy around anyone and everyone we can, including the dealers and Leica in Mayfair etc.

Session 6 went pretty much as normal - it's just a routine now. The hospital did think I was coming in on the Friday, not the Wednesday, but we sorted that. I need to phone them up on Tuesday and make sure that Session 7 is on the correct day too. Still tired and awake at the same time, but it's more manageable now. I have been doing the Piriton and Nytol trick again, and that seems to work if you wash it down with a couple of Plymouths...

I met up with Roy yesterday lunchtime and took a few environmental portraits of him in his study. One of them is the POTW on the right. What a nice guy, and we were discussing a collaboration project combining photography and his watercolours (which are superb, btw). Let's see how that can develop over the coming months. t would be great to work with him.

Meeting up with some of the guys at a Steam Rally near Bolton tomorrow if the weather improves. I will probably take the Leica out for a run. At least it's stopped raining now - absolutely piddling down this morning. So much so, that little Pips wouldn't go outside for a wee until she was thrown out and the door locked behind her... Been out for a walk now, so she's happier.

Saturday, 15 May 2010

Having fun with the Hasselblad

It's like having your eyes opened after along sleep. I am really enjoying using this camera and amazed at the results that I am getting. The Picture of the Week was taken on the way back from Stratford on Avon on Wednesday and is fantastic when viewed at a large size. (even if I do say so myself!)

I have also found a shop in Manchester that will process 120 colour negative roll film in an hour, so I might experiment with some after all. I want to get used to some different films before going to Skye in September, so will buy some slide film too. Can't wait!

Finally, we are nearly there with the Leica User Forum Charity Book. We have bought two copies of the final draft, in hardback, so that we can properly see what people will be getting and can adjust if necessary. The next thing is then to organise launch parties in London, Manchester, Germany and hopefully in the US, probably New York. Much depends upon if we can get someone over there to help, but we are working on that.

It should be a really good evening if we can get it right. We are probably talking about mid July, but it all depends on getting the right venue. Organising drinks and a DVD of the shots is the easy part.

Watch this space!

Sunday, 9 May 2010

At the Lymphoma Association AGM

Had a very interesting day at the Lymphoma Association in Reading, yesterday. Learned some things about new treatments coming through that I may ge able to benefit from at sometime in the future, including stem cell treatment from siblings. So long as it doesnt turn you into an Arsenal or Spurs fan, I'm up for it :-)

Had a very nice meal in Maidenhead last night with Mum & Dad, Kevin & Jan. It was Kevin's 40th Birthday yesterday and I hadn't seen him for ages. Noisy place though, right on Maidenhead bridge, next to where the rowing club used to be. Kept thinking of Ted Harris climbing out of one R.C. window and into another, over the river water, one evening for a dare...

Been in London today and visited the National Portrait Gallery to see an Irving Penn exhibition. Very good it was too. Pity the weather's been so dull. I would have wandered about taking some shots, but nothing very inspirational to be had under such grey skies.

Now knackered and on the train home. The post-P syndrome is really going to hit tomorrow, I can feel it. I think I'll have to go for the Piriton, Nytol and G&T solution ;-)

Thursday, 6 May 2010

8 sessions it is then...

As I thought, having discussed things with my haematologist yesterday, I am in the chair for eight sessions. This means that I now have three more to go and will be finished at the beginning of July.

Some good news is that he will be putting me on maintenance Rituximab. This has been proven to extend the remission period by up to 32 months (not 31 or 33..) over and above the typical 4 or 5 years that this course of treatment should give me. That means that with a bit of luck it could be 7 1/2 years before I need the nasty stuff. So, that IS good.

I forgot to take the anti-sickness pill last night and I can confirm that they work. Woke up feeling a bit nauseous this morning, but back to the usual space-cadet hyper state now until Monday.

The other news is that I bought a Hasselblad last week. I really wish I'd bought one years ago. I really feel at home with it, and working with the larger negatives is a real eye-opener. Using a slow film like Pan F, with a fine grain developer like FX39, the photographs are amazing. I will put some on my website soon, and there's a link to one as this week's "Photo".

On Saturday I am going to the Lymphoma Organisation annual conference at Reading University and will be coming back on Sunday. I will take the cameras with me and see what I can find on the way home. And, I'm really looking forward to taking it to Skye come September.

Monday, 3 May 2010

First Anniversary of my new status today

Feels like a lot, lot longer than that. So much has happened.

More later.

Thursday, 29 April 2010

Hassle

Or rather, Hasselblad.

Photography definitely isn't going to be boring over the summer. :-)

Monday, 26 April 2010

Why photography is boring. Maybe.

About time I did something like this.

We took the dog for a walk on New Brighton beach last night, just as the sun was going down. It wasn't exactly setting, but it was on its way. As some of you will know this is a favourite place to let the dog have a run around on the sand, and it's been the subject of far too many of my photographs over recent years. But, sometimes, you get a good one, such as the one kindly chosen by Kate Day at The Telegraph to be included in this year's charity calendar :-)

Last night, there was almost a queue of photogs out there and their very presence made me question what I was doing there, why, my equipment, everything.

So, what was I doing there? Well, apart from walking the dog, which I could do in the village, without having to get in the car and drive 7 or 8 miles, I went there to photograph the lighthouse. But as soon as I saw the others there, I didn't really want to. They were all standing or crouching within 20 feet of each other. They all had their Canon 450Ds or their Nikon D60s. They all had those backpacks that only digital SLR users carry, so that, for a walk on the beach they have every lens they own on their back.

They all had a small, zipped case. Yes, out came the ND soft grad filters. Out came the 81 or 85 warm up filters. Out came the Jessops silver tripods. It was all very depressing and all very predictable.

So, what on earth has this to do with me, you may (or may not) ask? Nothing.

Except that I just didn't want to be part of that crowd. Ann reminded me of the time (before HER time!) when I used to be a member of a camera club back in Maidenhead and we'd go out in a coach to Longleat, or Greenwich or somewhere similar. We'd descend, en masse, on a location, just as these people on the beach were doing. What's the difference? The difference is that I don't do that any more.

OK, so some of us get together every quarter and wander the streets of some Northern city and take a few photographs, before retiring to a pub to spend twice as long talking BS about cameras and having some lunch. Is that the same? Probably, but it doesn't feel like it.

I had the Nikon with me, with the 28 Elmarit-R. Why didn't I have the Lee filters and the tripod? Why wasn't I queuing to get into the spot that everyone else was at? Because it's boring. Digital SLRs are boring. People who want to be Joe Cornish are... well. They will never be Joe Cornish, and good job too. The world only needs one Joe Cornish. But his photographs? Well.

Don't get me wrong, they are beautiful photographs, but there seems to be a definite "formula" involved. Slide in the 0.9 soft ND grad. Add another 81 filter, just over the top 1/3 and at an angle of 22 degrees. All that stuff.

It must be me. I must be missing something, because, if one reads photography magazines or looks at the sort of stuff that sells by the bucket load, this is the sort of thing that people want. Just not me.

But, what DO I want? What do I want out of my photography moving forward?

Firstly, and I have said this in the past, but not done anything about it, I need a project. A serious, year long, photography project. I need to get myself organised and get down to it, and stop just taking snaps of anything that I fancy.

Secondly, I need to stop flitting between colour and black and white. Decide what I want to concentrate on, and stick to it.

Black and white.

Thirdly, I need to decide whether I am going to stick with "35mm" photography, or move into something else. HUGE investment down that road though. Best to stick with what I have.

Fourthly, am I going to save up for an M9/M10, or stick with what I have? Certainly, the M8 was not for me for a hundred and one reasons, but the M9 might be more attractive. But, I already have a full frame digital camera in the D700, which with the Leica glass gives me the best of both worlds. Do I need to spend another £5,000 on an M9? Probably not.

See. Mr Decisive strikes again.

If you have got this far, thanks for reading. I do need to get my head around why I do what I do, and what I can do to do it better, and with more satisfaction.

One thing's for sure. I won't be going to Perch Rock at sunset again in a hurry. But here's one I made earlier (last night, at around sunset, in fact)

Wednesday, 21 April 2010

That's that done

Took ages this morning. Not only do you have to drink the litre of dye, which takes 45 minutes to get through the system and into the parts that other lemon flavoured drinks can't reach, but they keep you for a good hour afterwards now, just in case you have a reaction to the dye or the IV marker that they put into you on the table. So, that's basically a whole morning gone.

It was, however, interesting to see the other people there waiting to have the scans done. There was one lady of 94 who also had to drink a litre of the dye. "What? You want me to drink all of that?!" She seemed to be coping with it OK when I left her, though, so good for her. It's also interesting that little old ladies of 94 in wheelchairs are still considered suitable candidates for radio- or chemo-therapy. 10 years ago, I am sure she wouldn't have been. One could have a debate about the ethics of radical treatment in one of such years, but it's probably best to leave that to others.

Coincidentally, it would have been my Grandmother's 100th Birthday today, so she would have been only 6 years older than the lady in front of me. Grandma died of lung cancer in 1974 - who knows where she would have been if she hadn't smoked all her life and had been offered the opportunities that the lady today was offered?

Anyway, in two week's time, I will know whether June will be wiped out as well as the Spring. I have to say that I am looking forward to getting through this stage now, and, hopefully, to not having to worry too much about it for a few years. While it's never going to go away, at least there may be a period when there isn't "something else to look forward to" by way of radiotherapy, chemotherapy, or whatever.

Saw a vapour trail for the first time in a week just now. It's been very pleasant having clear blue skies without them, I have to say and I am sure that people who live on flight-paths of busy airports have really noticed the difference. I hope that they have been making hay while the sun has been shining, because they are unlikely to have the opportunity again. There goes a plane over head now, even as I type. The real world returns.

Tuesday, 20 April 2010

CT scan tomorrow. Very tired today.

Doesn't get any easier. The second week of the three (if you count the treatment week as week one) is the worst. The crutch of the Prednisolone is no longer there, so the tiredness induced by the treatment is all that you have left. Not sleeping very well last night hasn't helped. Next week will be better.

My CT scan is first thing in the morning, so it will be good to get that done and then see what the results are in two week's time. Not expecting any miracles, though, but at least I will know where I stand shortly.

On a lighter note, my canvas arrived from Germany yesterday and it looks great hung on the newly decorated wall in the bedroom , even if I do say so myself. The Hadrian's Wall print has gone on the landing and also looks great. I will definitely buy more prints from them in the future.

I think I might get an early dart today and see if I can't grab an hour or so at the end of the afternoon...

Friday, 16 April 2010

Just a word of thanks

Once again, I would like to thank the many people who have offered me words of encouragement and support through this time, both on here, via emails and in PMs on the Leica Forum. People I have known a long time and those whom I have never met. I have even had some prayers said for me!

It really does make a difference, and I am very grateful to you all.

Thank you.

Thursday, 15 April 2010

The Grand National

Went to the Grand National for the first time on Saturday (no good going on Sunday, because it's not run then... ha ha!). We bought tickets to the "Steeplechase" enclosure, for which you can read "cheap". I thought that a hundred and fifty quid to see the finish line was a bit steep, especially when there are three of you going. Still, I wasn't expecting what we actually got.

If you buy a place at the Steeplechase, you only get to see one race all afternoon. That'll be the Grand National. In all, you see about 20 seconds of horse racing. They come past fences 1 and 2 twice in the afternoon. All the other races on the card are run on the short track - cheap seaters only get to see the odd jockey cap bobbing around on the other side of the car park.

Oh well. The sun was out and between us we managed to come home with more money than we started, and we had a good laugh at girls in platforms and high heels trying to walk down the grassy bank. Would have been bloody miserable if it had been raining though.

Won't go to that enclosure again as it really only gives you a pretty poor experience for the whole afternoon. Much better to save up and go to one of the "proper" enclosures or stands, such as Tattershalls. At least you'd see some horse racing :-)

Wednesday, 14 April 2010

News from the electric chair

Currently plumbed into the Cyclophosphamide with its large yellow "cytotoxic" label on the bottom of the bag. So long as it's toxifying what it's supposed to, I'm happy. The treatment is getting faster each time and I should be fully basted by 2 o'clock.

My blood counts are holding up and my liver and kidney functions are normal. Amazing :-)

I'm back in MY chair today and things on the ward are much quieter. Party-girl from last time isn't here and half the chairs are empty, which is unusual in my experience.

Appointment made to see the haematologist again in 3 weeks time, after the scan which will tell us how things are progressing. Still expecting 8 sessions so if it's only 6 that will be a bonus.

Will post my experiences at The National tomorrow.

Friday, 9 April 2010

Almost back to a "Week 3" again

More of the same really, this time round. Basically, you have one rough week, one not-so-rough week, then a "normal" week, then you start over again. And it's surprising how quickly the Week 3's come round.

Despite the weather over the Easter weekend last week, we had a very nice day out in North Yorkshire on Sunday. The photograph of Swaledale was taken then. It's a great part of the country and very quiet in comparison with many other places, especially the Lakes. Until you get to Tan Hill Inn, that is. Last weekend, it was full of bikers on old bikes and we didn't get to go in. Never mind - always next time.

Off to the Grand National tomorrow. I tried to go last year, but hadn't bought a ticket in advance. The queue to buy a ticket on the day was about half a mile long and six people wide, so I turned round and came home again. This year, better prepared, we have bought tickets already. Having been to a corporate box on Ladies' Day (the Friday) before, going to the cheap seats in the middle of the course will a completely different experience. Going to take just the M7 and probably the 50mm and keep it simple.

So, next stop, back to being plumbed in again on Wednesday, followed by another CT scan on the following Wednesday, which will tell me whether I will need the 6 or 8 doses. We'll see.

Saturday, 27 March 2010

Session three over

Very disappointed when I got to the hospital on Wednesday to find that someone else was sitting in MY chair... :-) One can get very possessive about these things and it just wasn't right sitting on the other side of the room. Especially when the young woman in the chair next to mine ended up having 6 visitors and a party... Anyway...

Not been quite so bad this time. Although I only got a couple of hours sleep on Wednesday night, and dozed through Thursday night, last night (Friday) wasn't so bad. Two cups of Red Bush tea, a Nytol and a hay-fever tablet seem to have done the trick.

Went to see the GP yesterday afternoon, as he asked me when I was first diagnosed to keep him up to date with what's going on. Otherwise, all he knows is when he gets copied into odd letters from various consultants. As I expected, I know more about this and the treatment, than he does, but that's OK. He has to know a bit about everything, then pass it up to the specialists. He did agree, though, that something like this needs to be seen as a long term problem, as opposed to an acute issue, and we discussed the fact that there are all sorts of treatments coming through that should be ready for me in 5 or 10 years time if I need them. He said that HIV is now basically just a long term condition and no longer progresses to AIDS, provided you live in the West and keep taking your tablets, and to a certain extent, this is where I am going. Keep taking the tablets.

I updated the website yesterday, so if you want to see what's been done, just go to http://www.andybarton.com and see for yourself. I have had a bit of a cull and a complete overhaul using iWeb. I would be pleased to know what you think.


Monday, 22 March 2010

Back in "the chair" again this week...

Ding ding, Round 3.

My next round of treatment (Nr 3 of probably 8) is this Wednesday. If there are eight sessions, then I finish them all in early July. Which is a long time away.

I am determined that, this time, the steroids are not going to get the better of me. I wasn't expecting that reaction last time round, so I am prepared for it this week. More walks with the dog. That's the answer.

But, keeping positive... We have booked a fortnight in Skye in September which is going to be terrific. We haven't had more than a week on one of the Scottish Islands before and we've never been to Skye, so this is going to be very interesting.

We also have a few days in Venice sorted for the competition, staying in an apartment with a couple of very good friends, so it will be great to see them again too. And, I might see if we can get a few days in June if the quack only gives me 6 sessions instead of the 8. Flying will be out of the question, but maybe a couple of days in Bristol (we keep talking about it) or down on the South Coast could be a good short break.

Might even get the tent out...

Wednesday, 10 March 2010

Back on an even keel now

Finally slept OK on Sunday night, but felt like I had jetlag on Monday. Since I had a box of paperwork with me, I decided to work from home.

Had a very nice lunch at Il Forno with Ed, then promptly fell asleep when I got home. I must have needed it. I just hope that things don't progress along these lines for the rest if the Spring, as it ends up taking out one week in three if you're not careful. But, as my HR Manager reminded me yesterday, I need to look after Number One this year

So, that's why I got up at 05:15 this morning to get a train to London to meet with British Telecom to tell them how crap their support services are :-) When I get back to NW, we are showing a judging panel around one of my projects, as it's on the shortlist for an award. Fingers crossed...

She did tell me to take as much time off as I need over the coming months, though, so I think I will take her up on that offer.

Other news? I was lucky enough to gave two shots chosen for the Leica Forum Book. The one I thought would get in didn't, and one I was less sure of did. Happy with that of course. Now we are collecting all of the high res copies of the shots and then can put the book together. Going to be a big job

No news from my new friend who wanted to use my photograph for nothing, unsurprisingly.

Saturday, 6 March 2010

Day 24

Very, very tired and have been all day.

Goodness only knows what I'll be like on Monday.

Friday, 5 March 2010

Second session

OK, so I had the second session on Wednesday. While it didn't take quite so long as the first, I was still there from 08:30 until 16:30 and I suspect that it will be an all day session from now until the end. The length of time is due to them having to make up the Rituximab individually, due to the cost, so that doesn't arrive until after lunch.

Feeling much more tired this time round. I couldn't get to sleep last night until about 04:00 and the alarm went off at 6, so I can feel a snooze coming on this afternoon. Even the Red Bush tea wasn't sufficient to knock me out :-) I am convinced that it's the steroid that's doing it. I seem to be having a different reaction to it this time round. I am feeling much more tense than I did three weeks ago.

Maybe this interesting email I received from someone yesterday, has something to do with it:

My name is xxxxxx xxxxx and I am writing from xxxxx, xxxxx. We have plasma screens in our office that we use as an internal notice board and I am wondering if you would mind if we used one of your photos on these screens as we don't have any images of the waterfront and a colleague of mine has recommended your work. The image we would like to use is: http://www.andybarton.com/3gsm.jpg

Unfortunately we do not have a budget to offer you anything for this as it is for internal use only but would love to use your work as it would be a great way to localise what we have on there and we really like your composition and love the mood of the image.

I look forward to your reply



The photograph is the "Photograph of the week" on the right, btw.

Whilst I am flattered that such a large company should want to use some of my work in their UL Head Office, I am extremely disappointed that they should think that they could use it for nothing. I wrote back and told him that I would be very happy to negotiate a price for him to use this should he so wish, but am not willing to part with it for nothing. Damned cheek.

I will post here should I ever receive a reply from them, which I doubt.

So, I think I will have to take it easy this weekend.

Saturday, 27 February 2010

Day 17

Haven't lost any hair yet.

So that's a bonus.

:-)

Wednesday, 24 February 2010

Ticking along fine at the moment

White blood cells are down, as are platelets and haemoglobin. But, all to be expected and nothing too concerning at the moment and I told the specialist nurse that I was surprised at how not-unwell I feel. Let's hope it's like this all the way through, and that the treatment is actually working without me feeling it.

However, she has advised me that aeroplanes are far too filthy for me to be allowed anywhere near one.

So, plans for the gathering of the Leica clan in Zingst may now have to involve a long drive, a ferry or two and an iPod full of Radiohead, Pink Floyd and Beethoven.

Will get there if I can...

(Actually, said nurse advised against going "anywhere foreign" at all, as "you wouldn't want to get poorly abroad". I think I know what she meant :-) )

This is a real shame, as I missed last year's extravaganza through being in hospital. This cancer really does mess up your life, even if you're not "ill" with it, just by restricting you from what you are "allowed" to do. Will have to wait until the 4th treatment and the CT scan that follows, before making a decision.

Fingers crossed.

I got some shots down on the marsh at the end of the road at the weekend, with my newly converted 250 f4 lens on the Nikon. There's one as this week's photograph, but it really does show that there is no substitute for length. Really "need" a 500mm or even longer to make the best of the opportunity there.

Monday, 15 February 2010

Two steps forward, one step back

OK, so we are now in week two of this process and things are slightly different.

Until yesterday, I was taking the Prednisolone, the "P" part of the R-CVP. This is a steroid, and the dosage given is pretty high. Today is the first day of not taking it, and I can feel the difference. I am now tired (it's lunchtime), whereas last week, it wasn't until later in the afternoon that the tiredness started to kick in. I need to watch this, as I am back at work tomorrow, properly. Maybe I will need to to half days or similar for a while.

Apart from that, things seem to be going OK.

I was hoping that the Ilford print of the Hadrian's Wall photo might have arrived today, but no luck, I'm afraid. It wil be interesting to see how they print that, from a digital file, onto real photographic paper.

Thursday, 11 February 2010

So far so good

Well, yesterday was an experience. But nothing like as bad or traumatic as I was anticipating - I was actually surprised.

Arrived at the hospital at 8:15 and waiting for the department to open at 8:40. Had bloods taken (they check haemoglobin, white cell count and platelets to check that your blood is in good enough condition for you to receive the treatment)

Then, after seeing my consultant and signing the consent form, had a good meeting with a specialist nurse, who explained what each of the 4 parts to the cocktail were, and what they did and what the side-effects are, they put me on a saline drip for an hour or two. This is to make sure that you are well hydrated before they hit you with the nasty stuff. It turns out the drugs are prepared specially for each patient on the day. The dosage is generally patient-specific, excepting for the Rituximab, which is given the same to everyone. But, that too is made up specially. It costs £2,000 for a 250ml bag, and "We don't like to put it down the sink if you don't arrive". Which is fair enough, when it's my tax that pays for it.

The first two bags of drugs, the Cyclophosphamide and Vincristine go through reasonably quickly, but the Rituximab is the one to which people get an allergic reaction, so they start that off slowly and gradually build up the through-put rate. They give you anti-histamines and paracetomol at then start of the procedure, to reduce the likelihood of reaction, but I was very fortunate. Apart from my hands going cold for about 10 minutes, I suffered no ill effects.

In fact the whole day went very smoothly. I was there until an hour or so after closing time, because of the time it took to administer the last of the drugs, but next time, things will be quicker.

Toady, I am at home, as I will be for the rest of the week. I'm not feeling too bad, it has to be said, but I didn't sleep very well last night and am pretty tired, so I just have to take things easy. However, In readiness for my hair falling out (which it most likely will), I have been to the barber and had a "Nr 3" all over. "Are you sure?" he said...

I have to go back to the clinic there on both of the following Wednesdays between now and my next course. They need to check the blood again, as the treatment basically wrecks the white cell count and haemoglobin levels. This will leave me vulnerable to infection, particularly at the end of next week, so on the assumption that I feel well enough to go back to work, I need to be very careful in meetings. If anyone has a cough or a cold, I will need to make my excuses and leave, as a chest infection could kill someone with such a reduced system.

In summary then, things could be a lot worse. The additional drugs that you have to take, to prevent the sickness and stop stomach upsets, seem to be working fine at the moment. Fingers crossed, things continue as they are.

Tuesday, 9 February 2010

Just a brief note to say "Thanks"

I have had so many messages of support, from all over the World, that I would like to say "Thank you" to everyone. I really do appreciate all the support everyone has offered me.

Tomorrow's an important day, and I will update the blog as soon as I can.

Until then..

:-)

Thursday, 4 February 2010

It starts next week

Much as I expected, the results of the CT scan have meant a course of chemotherapy being recommended and booked. We start on Wednesday 10th February.

If I am lucky, I will need only six treatments, one every three weeks. If I am unlucky, I will need eight. So, this is it until at least the end of May, if not the beginning of July.

The cocktail of drugs that I am to be given is known as R-CVP and consists of Rituximab, Cyclophosphamide, Vincristine and Prednisolone. The first three are given intravenously, while the last is a steroid that is taken orally, over 5 days, starting on the day of the iv drugs. If you want to know more about these, there is a very good leaflet available here: http://tinyurl.com/ya8oo24 and Macmillan also have something very useful: http://tinyurl.com/y9mh3e7

Helpfully, these leaflets also list the side effects that may or may not come. Anything from a dry mouth and mouth ulcers, to a trigger for diabetes, or even other cancers. I could be manic or depressed, get constipation or bladder irritation. I could get pins and needles or low blood pressure, or... So, it's all exciting stuff.

The first course is, apparently, the worst. Once they have seen how you react to the above, they can tailor the remaining sessions to a certain extent. So, if you do get nausea, they can include an anti-nausea drug the next time. It takes all day to administer the drugs in the hospital, and the first session may involve an over-night stay too.

I have been advised that I will need to take at least the remainder of the week off work and maybe the next week too. However, I expect that for the following sessions, just the three days will be necessary. At least I hope so. That would just mean that I would lose three days every three weeks, which isn't so bad. But we will see. No doubt I will post here what happens...

If this treatment works, I have been advised that this should knock the disease back for the next 5 years or so, at which time another round of treatment, with more powerful drugs will be on the cards. Eventually, there could be bone marrow transplantation to look forward to and there is some good work being done with stem cells at the moment, which may have come good by the time I need it. I have decided to pass on the mistletoe for now...

One of my friends has suggested that I keep a photographic record of what happens while I am in hospital. I'm only going to be in there for a relatively short time, but I will look at making a project out of the next few months for sure.

So. Let's get on with it. Plenty of people have been down this road before and come out the other end smiling. There's no reason why I shouldn't.

:-)

PS - Top Tip for a really excellent film to watch - "Moon".

Friday, 29 January 2010

Big week, next week...

Probably/possibly THE big week, so far...

So far, we've had the diagnosis, the kick back from the infection, the CT and PET scans, the bone marrow biopsy, the radiology. This week, we have the potential to move up a gear.

On Tuesday, after I see "my man", I may move into a six month period I could have only imagined, only a year ago. Or, I may not. As I sit here now, that's the difficult part. Not knowing.

So far, everything that's happened to me on this journey has been pretty benign. Bad choice of word, maybe, but to be honest, it hasn't been so bad, as far as it goes. It's all been pretty immediate and "dealable-with". "This is what you need to do, and you need to do it tomorrow morning" kind of thing. No time to reflect and think.

Next week may bring in a new dawn. I really don't fancy six months of feeling crap. Or at least one week REALLY crap, one week crap, and one week slightly crap - repeat 6 or 8 times. That's from now until August. We are talking end of the football season, Wimbledon and the World Cup. And still not finished.

I'm not scared about anything. I'm disappointed. I don't fear where this is going, but I'm not happy that this is going somewhere where I don't want it to go, and there's nothing I can do about it. I am stoic. And patient. I am doing what I am told, by people who know what they're doing. At least I trust them to know what they are doing. I know that I have lots to give, and receive, and I know that these next few weeks, months and years will be difficult and rewarding, challenging and fulfilling. I have lots I want to do. And I have lots of family and friends who love and care about me and offer encouragement and support, and I am truly grateful for every bit of it.

But next week, will be a big week.

Wednesday, 27 January 2010

Update while waiting for my brake fluid to be changed

I am sitting in my car dealer with an hour to kill, so it's time for an update

Since last time, I have had another CT scan and am now waiting for the result to come through. I see the haematologist next Tuesday, so we will know then what's in store. I am not looking forward to it, to be honest, but I do need to know. It's like having your life permanently on hold, waiting for the next thing to happen. Planning is very difficult, not knowing what you will need to do and having the condition always there, like the dead child in the "don't speed advert" on the TV is just something you have to live with. My guess is that it's 50:50 re treatment next week.

On a more positive note, I booked the flights for Venice in October last week, andnow need to find a hotel. The San Cassiano, where we stayed two years ago, isn't taking bookings for Oct yet, but I'd like to have somewhere booked and be able to look forward to it. Also looking at maybe a cottage on Islay in the fist two weeks of September, which will be beyond any treatment that I might or might not need to have.

Had an interesting day on Saturday at the gathering in Trafalgar Square to protest about S44. I think a point was made, but know thst it won't make any difference at all. Such is life.

More next week when I've seen my man.

Oh, yes, the Leica Forum Book entries close on Sunday. The total raised so far is now well over £6,000, which is a fantastic sum. Must post a reminder to everyone to get their shots in before Sunday night.

Tuesday, 12 January 2010

Belated Happy New Year!

New Year long gone now, of course, as was our week in Scotland.

Unfortunately, with the weather we have been having all over the country, the week there wasn't quite what we were anticipating. Indeed, it weas actually only a day there, and even then, we couldn't get off the A-roads. BMWs really are rubbish when it comes to driving on compacted snow and ice. So, we returned on the Wednesday instead of the Saturday, taking advantage of a break in the snowy weather. Took no photographs to speak of. However, we had a very nice stay in The George in Inveraray. Excellent food to be had there along with very comfortable rooms.

My Dad has had to have his shoulder joint replaced, but is back out of hospital now, and seems to be on the mend, which is excellent news.

The Leica book has now raised about £5,400 so far. The date for submissions closes at the end of January, so it will be interesting to get on with the judging next month. There are around 400 shots to assess, so far, so that won't be a 5 minute task.

And, yes, I am Mr April for Telegraph readers this year. Still waiting to hear about the prize though...

Now, I just have the CT scan tomorrow morning and the aftermath of that to look forward to.

More later...