Photography weekend

Have had a photography based weekend.

Saturday morning, met a few of the guys at Tatton Park. Over a cup or three of green tea (only started drinking that in the last 6 weeks, funnily enough...) we discussed the various merits of different camera options open to someone with a generous wife. Like mine. :) Vasken offered to show me his wife's Nikon D700 during the week, so I need to arrange to meet with him when I am back in the office tomorrow afternoon.

Part of the reason for going to Tatton was that they were having a "1940s Themed Weekend" - an excuse for people to dress up, predominantly as either GIs (presumably because they got all the girls) or as German Stormtroopers. The only "British" people there were an ARP warden, a member of the Home Guard, and a 17 year old "officer" straight out of central casting. Think of "Darling" in " Blackadder Goes Forth" and you get the idea.

Anyway, it was good fun for a couple of hours, and the photos are on the website.

Today, I have finally got round to finding the negative to send off to the printer in the US, following the very generous and thoughtful offer by lots of friends on the Leica Forum. Still can't quite get over how generous these people are. I have decided to use the image that I have used at the top of this blog - not only is it one of my favourites, but also it is going to be my "Image of Hope". (I have just made that phrase up, by the way, it's not part of a 10 point plan to wellness, or anything :-) ). I will send off the negative, and on a CD, my interpretation of how it should look. I will ask to printer to get something like that out of the negative. I am sure he will do a cracking job. (I hope that the negative is in good condition, having said that!)

Here's a link to a much larger version, if you're interested (Click on the image below, and it will show a larger version)



I very much look forward to seeing the result.

Discussed with Ann this morning about maybe getting a few days in Bordeaux sometime this year. September would be ideal, but could be tricky with her off-duty. Get there just as the harvest is happening - warm sun, ripe grapes. Will have to see - those AirMiles are now burning a hole in my pocket...

So, I haven't hugged a pregnant lady

I couldn't find one.

Normally, you see hundreds on the street, but when you need to avoid one, they all disappear. Bloody typical.

I blame Thatcher...

Talking of Thatcher, I parked my car outside Dave D's house this afternoon. He was down "that London", so didn't notice, but it was a handy place to park when visiting the North West's premier radiation treatment place

The people at Christie's were absolutely first class. My appointment was at half past twelve, and at exactly 28 minutes past, my name was called and off I went.

I was sat down in a small room, with a Monty Python comfy chair, and, after installing a cannula into my arm, the technician injected about 20ml (max) of radioactive glucose into a vein. This stuff is about 4 or 5 times stronger than the normal stuff they use. I asked her why she wasn't wearing a lead bib, and gloves, and she told me that they were of no benefit, when dealing with this injection. The best defence they could use was to be close to the injection for as shot a time as possible, and as far away from it as possible, for as long as possible. If any member of the medical staff were reticent about being near me, it was nothing personal, apparently...

I was told that hugging young children and pregnant ladies was a no-no...

No risk there then.

About 45 minutes of Thomas Newman on the iPod later (no reading allowed, darkened room, and sitting still only), I was called into the scan room, and placed in the scanner. Usual removal of cuff links, collar stiffeners, watch and glasses stuff.

"Trousers round your knees please. Mr Barton."

Dignity intact, one lays on the table and places one's arms above the head, holding a strap above one's head.

Stay in that place for half an hour, whilst the scanner does its stuff, and you are then free to watch Sharapova play tennis and have a cup of tea and some biscuits - welcome, having had nothing to eat since the salad the night before.

Then, you are free to go, and phone your loved ones to tell them how you got on.
It's a good idea to stay at home, until you establish how many people you know who MIGHT be pregnant... a surprising number...

Now, I just have to wait (again) for the results to be emailed to Hong Kong, and my next step to be decided for me, on my behalf.

On another note, Ann has decided to buy me a D700 for my birthday. Which is more than nice... :-)

Is the radiation dangerous?

(Advice given by the hospital for people having a PET scan)

"The amount of radiation you receive is small. It is similar to that from an X-Ray examination. However, please avoid prolonged close contact with children and pregnant ladies for the rest of the day on which you have your scan. This is to avoid exposing this group of people to an unnecessary radiation dose."

Now, I did A-Level physics, and played around with radioactive lumps and Geiger counters and all that stuff. If the radiation is strong enough to be even a mild hazard to children and “pregnant ladies” (as opposed to pregnant men? :-) ), that must be pretty strong stuff. Just wish I had access to a counter now…

Anyway, what the heck.

Difficult to concentrate when you know this sort of thing is coming up later in the day, but, back to my Appointment Documents for my design teams...

Feeling a bit low today

Not sure if it’s just “post couple of day’s leave” normal feelings, or whether I am thinking about what the scan tomorrow might reveal.

Whilst on the one hand, it’s good to know what the extent of the problem is, now that I know that there’s not much that can be done about it, it actually doesn’t make much difference. The “treatment” is going to be them same, regardless, unless things are much worse than has been thought up to now.

I’ll just take tomorrow as it comes and move forward on Thursday.

Going to try and see if we can get up to Scotland in August, if only for a couple of days or so. I would really like to sit on that beach on Kintyre (or even better, Islay) and think about things for a while.

Ann offered to buy me a lens for my birthday next month, but I’m not sure if I need another. I do have several… I then thought about maybe an electronic spot meter. I had lunch with a friend last week, who showed me his old Pentax spot meter, marked up with the Zone System “zones”. Makes the whole thing much easier, but not sure if it’s relevant to what I do. I am pretty happy with the way I expose and process my Tri-X as it is, so I’m a bit uncertain as to how much use the meter would actually get. The built in one on the M7 is very good indeed (although not the same of course). So, maybe I will ask for a contribution towards a Nikon D700 – if I can find mounts for the two principle lenses that I would like to use with it.

Or maybe I’ll just continue to shoot film and have done with it…

We’ll see.

More tomorrow

PET scan date confirmed

True to his word, and despite him being on holiday for 3 weeks, my new friend the haematologist has organised a PET scan at Christies Hospital

Next Wednesday, 24th. Excellent.

Then we will be able to see what's really happening

Great weekend

Our daughter took the news extremely well, considering, and we had a great weekend in Edinburgh and "The Kingdom of Fife"

Makes it all so much easier, now that everyone important knows, and is on side.

Looking forward to getting a date for the PET scan, and, hopefully, a weekend away next weekend.

Telling the family

Off to tell our daughter today. Not going to be easy, I suspect.

Ann's been brilliant - as one would expect! :-)

Progress

First of all, I'd like to thank everyone that has commented here, or elsewhere, for their generous support over the last few weeks. It makes a big difference and I am very grateful.

Saw the haematologist last night - very nice man who clearly knows his stuff. He quietly took a full history, then had a poke around my neck and armpits.

Basically what I have is a chronic non-Hodgkins lymphoma, that isn't going to kill me any time soon, even if I receive no treatment. Indeed, if it's as he thinks it is, no treatment is the best treatment. However, if it's at a very early stage, then radiotherapy would beneficial. I am probably in Stage 2, but potentially Stage 3. There are 4 stages.

Most people that develop this condition are in their 60s and the average life expectancy is around 8-10 years. Because I am on the extreme left hand end of the normal distribution curve, age-wise, these stats don't necessarily apply to me, but I was advised last night that there's no reason why I shouldn't expect to live until the end of my normal working life. So that'll be around 70 then, the way things are going. That's not so bad; my pension is going to be worthless anyway, so I may as well die a month after I retire :)

The most likely scenario is that we leave it alone, but have regular checks on it. If it moves onto the next stage (if it's not there already), then some chemo might be beneficial, but at the end of the day, it's not something that's curable and it's just something that you have to live with until it kills you. Or something else does.

Next step is to have a PET-CT scan, which involves injecting £900 worth of radioactive glucose into your system. This bonds onto all the nasty bits and makes them glow in the dark under the scanner, and is the only way that they can really see what the extent of the disease is. We are so fortunate these days to have all this kit which allows diagnosis without surgery. I am hoping that this will be done early next week.

I told him that I had cancelled my annual trip to the Leica meet in Germany this weekend. "Why?", he asked. Well, I was under the knife three weeks ago, and didn't know what was in store for me. Shame though, I've been looking forward to that since last year. Always next year.

Finally (sorry about the long post), I am still not very happy about having been left high and dry by the previous hospital. I think I might drop my GP a line, just so that he knows and can consider whether to refer patients to them in the future. If I were in the US, I'd sue them for un-necessary worry.

Viewing this blog on a Windows PC

Just wondering why the URL (within the blogger system) for the image behind the header is invalid when viewed on a PC, yet works fine when viewed on my Mac at home. Can anyone else using a PC, see the photo behind the header?

The number of pages generally that don't work properly when using IE7 is remarkable, in my experience.

First stage signed off

The surgeon doesn't want to see me again - which is good. He couldn't (wouldn't?) give me the CT films, but did give me the CT report. That makes horrible reading too, when combined with the pathology report that I have already got a copy of. Oh well...

He was a bit upset that I have found myself a new haematologist, but, frankly, I wasn't prepared to wait for his bloke to get round to contacting me.

Onwards and upwards - more (and better) news tomorrow I hope.

Appointment with my man this evening

Just hoping that he's got all the CT scan information, including film, so that I can take it to the next hospital tomorrow evening.

Otherwise, I might need to have another one, which will be another week's delay.

However, I spoke with my GP yesterday (he called me) and he has been absolutely fantastic. He has asked hospital Nr 1 to have all the info I need available for me to collect tonight.

Fingers crossed...

Spending money (or not as the case may be)

Strange (or maybe not so strange) how this affects the way you think about things.

For example, I went through a thought process this lunchtime in John Lewis with regards to a potential purchase of an item of around £300. I didn't bother, because I felt that I might not get full use out of it.

Short-termism takes over.

Going to save a fortune.

Not much about Leicas here yet...

Have to see about that in the coming weeks...

Haematologist appointment

Just had a call from the "new" haematologist's secretary (5:45 on a Saturday? That's more like it)

Have an appointment booked for 7 p.m. on Wednesday - can't wait.

I need to get hold of my CT scans and report from the first hospital to take with me. That could be tricky, but I will make a serious fuss if that's not possible.

Final appointment with the surgeon is on Tuesday evening, so should be able to tie up all the loose ends with him then.

Feels like we are staring on a road to making some progress now.

Which is good :)

Getting a haematologist

OK. Friday. End of the week after seeing the surgeon again. No sign of the haematologist writing to me or calling me for an appointment.

I rang up the hospital, asking to speak with the guy’s secretary. When I get through, I find that he only works there one day a month, and he won’t be available until the end of June and then again in August. That’s 3 weeks away! What the hell is going on? I could be dead by then...

This is Private Healthcare we are talking about here. Not the NHS – who have targets and requirements to see people within strict times of being referred. This stuff costs me money in insurance premiums every month.

I call the G.P. again, and am told that if I come to the afternoon surgery towards the end of the session, I can see a doctor at the end of the list.

I am fortunate that the doctor on duty was the Senior Partner, and he was excellent. I explained what the situation was (he had most of my notes from the hospital there already) and I explained that I didn’t think that it was good enough to expect people to wait 3 weeks to see a specialist. He agreed, and did some ringing round. I am now off to see a haematologist next Wednesday or Thursday at a different hospital.

I need that advice.

All I have at present is a pathology report which reads like a death sentence. I need someone to tell me what is going to happen to me. What I need to do. What my chances are.

I want some answers and I want some honesty.

I am disappointed with the level of service in this regard from Bupa.

Pathology Report

The 10 days since the operation have now passed, and on Tuesday, 2^nd June, I saw the surgeon once again.

 

The report is not good.

 

I definitely have a lymphoma in my abdomen. Not just in the groin, but also in other nodes within the abdomen. I need that referral to the haematologist.

Go to the Macmillan Support Centre at the Linda Macartney Centre in Liverpool. The woman there was extremely helpful and very supportive, both to me, and my wife.

Infection

So, having had the operation to remove my lymph gland on the Wednesday, I took the rest of the week off work, together with the second Bank Holiday of the month, returning on the Tuesday.

I was fine at the office, and had a very useful chat with one of my Directors who had been through a similar experience a few years ago. Some people in the office knew what was happening to me, others didn’t.

By the Thursday morning, (28^th May), I had noticed that the wound area had swollen more than it had been previously, and half way to work, I turned the car round and returned home. I was pretty uncomfortable, and by lunchtime had begun to get a temperature.

I phoned the hospital in the morning and asked whether I could see someone that afternoon. They said just turn up to the day case ward and the resident doctor would be able to take a look at me. This we did on my wife’s return from work at about 3pm.

By this time, my temperature was 39.1 deg C, and I was feeling pretty rough. They decided to admit me, and place me on IV antibiotics, to deal with the infection that had developed. I remained in hospital until the Sunday, when I was allowed home with a continuing course of oral anti biotics. I was advised to take the week off, in order to help get rid of the infection and rest.

How it started...

I will start with a summary of how I have got to where I am with this. After all, one doesn’t suddenly wake up one morning and “have cancer”, although in my situation it wasn’t far from that. 

Bank Holiday Monday, 4th May. I got up and had a scratch, like you do, and noticed a lump in my groin. My first reaction was "Bollocks" and my second was "Bollocks, I have a hernia". After the usual difficulty, I managed to see my G.P. later that week.

Having seen him he reckoned he couldn't find a hernia, but referred me to the groin man at my local Bupa hospital. I get Bupa membership through work so am fortunate in that regard. I saw Mr Groin about a week later. 

He couldn't find a hernia either, but was concerned about the lump, which had grown by this time. It was in the crease between the top of the right leg, and the lower abdomen. He was also concerned about the fact that my right thigh is 2 cm larger in diameter than my left one - something else I didn't know, but if I had, I would have put that down to being right sided. 

Anyway, he asked me to make an appointment for a CT scan - fortunately, I was able to get one the next day. 

CT scans are OK, but when having the groinal area scanned one needs to drink, and retain, a litre of fluid that contains some ions that show up on x-rays. It sort of tastes like aniseed, but not quite. The scan itself takes about 5 minutes, but you are at the hospital for about an hour and a half. 

The scan takes about 10 days to collate and have a report made. My 10 days were up on Tuesday 19th May, when I had an appointment to see Mr Groin again. I saw him at 5 pm. 

Good news was that my liver, spleen, bowel and other useful things below the diaphragm are all OK (incredibly!), but I have enlarged lymph nodes in the groin and across the abdomen. This is a likely indicator that I have lymphoma, which is cancer of the lymph system. I asked him how long I might have had this condition, and he said maybe 9 months to a year, but if it's in the abdomen, it's not something that you would notice. He told me that in order to be certain, he would need to remove the enlarged gland in my groin, and send it away for a whole string of pathology tests (another 10 days). He suggested that I return in the morning for the operation. 

This I duly did. 



So, I arrived at the hospital, sans breakfast or cup of tea, at 8 am. By 8:40am, I was on the trolley in the pre-med suite, congratulating the anaesthetist on how I didn't feel the stent going into my hand. He said thanks, but I do this 20 times a day, every working day of my life. Which is fair enough, I suppose.

Next thing, I am suddenly wide awake, in recovery, with an oxygen mask. No drowsiness, not sickness, no nothing. The nurse took off the mask, and I said "Is that it?" Incredible. 

Off back to the room, for lots of water to drink, and free wifi. Back home at tea-time. 

The following morning, I was sore where my man ripped part of my guts out, but otherwise I felt fine. 

So, how do I feel about probably having cancer? Mr Groin (who will pass me over to an oncologist in 10 days) told me that if I was to choose what sort of cancer to have, lymphoma would be top of the list. Which is nice. There are several types of lymphoma, some of which can be cured, and some of which you just have to live with. I won't know until later which type I have. Obviously, I would prefer a curable one

But, even if I haven't, I am not feeling worried, or anxious. It's almost as if it's happening to someone else. Being fortunate enough to be able to have an operation 15 hours after a consultation is a big bonus, of course, as there's less time to fret over what's going to happen to you, but I am resigned to having to have chemotherapy over the summer. I do confess to having a little weep on Tuesday night, though. 

It's just one of things that comes along in life that you have to deal with. 



I am disappointed that my annual pilgrimage to Leica HQ in June is likely to need to be cancelled, but that's not the end of the world. I'd hope that my 25th Anniversary trip to Malta and Italy will be OK in October though. 

My turn this year

I have cancer and I want to write a blog about my experiences. OK with you?

On the assumption that it is, I will begin...