Christmas has been and gone

as it usually does.

This year, it left my Dad in hospital with a dislocated shoulder and a triple fracture of the humerous. Going down to see him tomorrow, provided the weather keeps off. This has been the worst December for weather that I can remember for a long time - the snow is hanging around in some parts too (couldn't get off the drive on Christmas Eve for the iced up road. Torville and Dean went past...)

Off to Scotland next week for a few days. We have booked into the Mal at Leith and then on to Inverary. Haven't been up there this year, due to "unforeseen circumstances", and it will be good to see the place in the winter.

Yesterday, we took a day out to The Lakes. The weather was glorious on the M6, but by the time we got to Keswick, the cloud had descended and it was all a bit grey. Found out that the Dog and Gun on the High Street is very dog friendly though, so we had a lunch in there.

Looking forward to another CT scan in January (13th), followed by a visit to the haematologist on 2nd February. There was an interesting piece about a woman in Scotland with NHL, who has been "cured" through the use of mistletoe. Sounds like complete BS to me, but worth investigating further.

And that's it for this year - in a place I wasn't expecting to be this time last year, that's for sure.

And, I might have to think about changing the title of the blog... this is a long running saga.

And so, this is Christmas (nearly)

Another Sunday, another update.

Saw my haematologist on Monday this week, and he was pleased with the way that the radiology has worked. So that's a good sign, because so am I.

He wants to do another CT scan in January, as I haven't had one since first being diagnosed in May. This will, of course, let him see what progression, if any, the cancer has made in the meantime. Depending upon what the results show (they will be available in February), he will decide what's next for me.

We discussed options with regards to chemotherapy, and he's minded to use R-CVP if anything. This is less toxic than RCHOP, which has been the standard treatment for some time, and means that the RCHOP can held "held back for later". Any of these treatments are one shot affairs, once you have had RCHOP, you can't have it again. The R-CVP is also less likely to make you lose your hair, too, not that that is of great concern ;-)

The Telegraph Charity Calendar is now on sale -

http://blogs.telegraph.co.uk/culture/kateday/100005630/photo-competition-calendar-for-telegraph-christmas-appeal-on-sale-now/

I think that I am Mr April, but will have to wait and see.

Finally for now, the Leica Forum Charity Book has so far raised £3,360, which is an excellent result, with more to come, hopefully. If you're interested, you can check on progress here:

http://www.justgiving.com/L-Camera-Forum-Book

Good news

One of my shots has been chosen to be included within the Daily Telegraph Charity Calendar for 2010. As part of the deal, I get to spend some time in a workshop with a pro photographer, and get a tour round the Daily Telegraph's news room. Both of which should be interesting :-)

Talking of charities, the Leica Forum Book is starting to develop some good contributions, and as of now, we are up to £2,225 in donations, with 3 weeks to go before closing time. Plus, the £5 mark ups on each book sold. This is a very satisfying project, and I am looking forward to seeing the photo entries when the time comes.

Rebecca's home this weekend, so we can do a bit of shopping in Liverpool tomorrow. It's a shame she has to go back for a few days to finish term, but she'll be home for Christmas next weekend, I expect.

So, three bits of good news for the price of one :-)

Not the final visit...

Wants to see me in a further three months (and, by the sounds of it, on a rolling 3 month schedule after that) and he's still talking about a course of chemo. But, not just a 6 treatment course, the full 8. So that's a 6 month course from start to finish, as the treatment is done every three weeks.

From what I understand, you feel really bad in week 1, bad in week 2, not so bad in week 3, then on week 4, it's time for treatment again, so back to week 1.

Let's see what the haematologist says next week.

Keeping positive*! :-)

*Hard work sometimes...

The final visit

Well, hopefully the final visit to this particular specialist, at least for the foreseeable future.

Just about to go to the Clinical Oncologist for a wrap-up consultation following the radiotherapy last month. He is the one that has been suggesting chemotherapy as a follow up, while his colleague, whom I see next week, is less keen on that.

Still, should be able to report some progress later.

Looking forwards to the dinner with the local Lymphoma Support Group tonight, with the office Christmas do on Thursday. A whirlwind of engagements...

More later

Been an even longer time, this time...

I am very happy to report that there's not much to report. Which is good.

Happy to say that the radiotherapy finished last week, without any repeat of the problems that occurred at the beginning of the session. It would have been good if the machine hadn't kept breaking down, leading to two hour waits, but at least I was seen on the same day that I was supposed to have been :-)

What else has happened? Got a dose of the Swine Flu on the Monday after the last posting. That dry cough ended up as a temp of about 38.5. Fortunately, my "Flu Buddy" was able to collect some Tamiflu for me on the Tuesday morning and by Wednesday lunchtime I was feeling much better. So much better that I was able to attend the public consultation in Blackpool on the Thursday morning, Friday and Saturday.

That went extremely well - we had 550 people through the door, which is very good indeed considering the weather and the overall response was very positive. "Just get on with it" summed up most of the responses. I wish we could. I've been working on this for 3 1/2 years now, and we haven't even submitted an Outline Planning Application yet. Won't be on-site until Spring 2011 at the earliest, either. Frustrating.

Have to see both the Clinical Oncologist and the Haematologist in early December, so let's hope that they can both agree on the way forwards...

That's about it, for now. No news really is good news. :-)

Been a long time - lots of news.

Sorry.

Well, it has been a long time since I updated this and much has happened.

Firstly, we went to Malta for the Leica Forum "One Challenge" 2009. What an interesting place Malta is (even though we only saw Valletta and Sliema). Never having been to Southern Spain, or Greece, it's what I imagine the countryside down there is like - but in English, with cars that drive on the proper side of the road, real road signs and telephone boxes and currency that is easy to know the value in the UK.

Oh, hang on, the Euro was supposed to be about €1.50 to the £, not at parity. Oh well - the £ will have gone up in value by the time you read this...

It was great to meet up with the "Usual Suspects", and some new guys too. Especially good to meet Ivan, who was an excellent host to us all over the weekend, and to the family especially when we went for supper with his on the Friday.

Our competition entries have been sent to Carl in Norway, and voting will start next weekend, hopefully. Fingers crossed - there's an excellent prize this year.

Leaving Malta, we went to Umbria for a week. Nice little apartment in Panicale, recommended by "Nige the Car Park Man" - ideal for touring round the whole area, and a nice place to come back to in the evening. As always when we go to places like this, we try to do much too much while we are there, so we ended up driving about 1600km in the 6 days we were there. BUT, we did see a lot of lovely hill-top towns, all of which merge into one big one for memory purposes. We also found a fantastic 12C priory now converted to a hotel, that we will keep to ourselves.

An excellent way to spend a Silver Wedding and a 50th Birthday.

So, got back last weekend.

On Monday, started the radiotherapy. That went fine.

On Tuesday, woke at 2am, feeling like someone was trying to rip my leg off. The pain was just something else. Even the horse pills I was given after my surgery didn't touch it, so I spent a very nasty night and Tuesday, prior to being driven to the second appointment at around 5 o'clock. Saw the on-call radiologist, who advised that lymphoma does react very well to radiotherapy and the pain was most likely to be being caused by the node shrinking. Already. Pain is good. Lunch is for wimps, and all that stuff. Not convinced, personally. Took Wednesday off from work too. No diarrhoea or cystitis, though. So that's a blessing :-)

Got to the end of the week, and my first mid-term appointment with the consultant. He has been discussing my case with the haematologist, and it looks highly likely that chemo will follow the radiotherapy. What he couldn't have known was what was to happen of Friday night. B-symptoms arrive - the next stage, and the trigger for chemo.

Again, was awoken at about 2am in an absolute sweat. Dripping from head to toe I went to the bathroom and washed myself down. So, by the time I got back into bed, I was shivering like it was going out of fashion. A classic symptom, apparently. After the second bout of this, I decided that it would be better if I retired to the spare bed, where I spent the night sleeping on bath towels, with a towel over the pillow. Not a great way to spend the night.

Saturday night wasn't quite as bad as that, but I will be keeping a diary to share with my Consultants. Which I am sure they will appreciate :^D Have picked up a dry cough from somewhere too, so all in all, I'm feeling pretty crap.

Been working on the public consultation boards for the exhibition in Blackpool all day today. They must get to the printers in the morning if we are to meet the Wednesday deadline. Fun, fun, fun. Especially when trying to get PCs to work from home... 'nuf said.

So it looks like it could be a very interesting Autumn. I just want to get on with it, really, but it's not a great thing to be looking forward to. I am convinced that I have had this disease much longer than I thought, as there was never a suggestion by the consultants back in the Summer, that I would need chemotherapy by Christmas.

Nearly there...

Friday morning saw me at the Oncology Department for the final CT scan and the preparation for the radiology, later in October.

Sitting in a small waiting room for half an hour, with half a dozen coughing, spluttering, sneezing and generally sick other people cannot be good for your health, so I have been doing a pre-emptive Lemsip strike over the weekend. However, once out of there, and into the hands of the experts, things went a lot better.

This CT scan was not for assessing whether or not I have cancer, but to see exactly the situation with the node that is to receive treatment. So, all that is necessary is to have the marker injection, and not the aniseed drink (see blog posts from a couple of months ago). The canula was put into the vein on the inside of my right wrist - it's pretty prominent, so went in easily.

Then it's just a case of dropping your trousers and laying on the CT scanner, while about 6 people place various metal junk on your abdomen. a ring of copper wire was placed around the node area and three ball bearings were stuck to the skin, one each on the edge of the pelvis at the hip, and one just below the navel. Once the dye is injected and the scan done, the metal is removed, and the ball bearing locations are replaced with tattoos. Apparently, people have tattoos for fun... ;-) It is a bit of an odd experience having 5 or 6 people working around your abdomen while you are laying inside a machine, but they were all very friendly and efficient.

Although I have had the dye injection before, this time I really noticed the flow through the blood system - within a couple of seconds, I could feel the "flush" in the fingers on my left hand, even though the injection was on the right. A couple of seconds more, and the flush reaches the groin and the legs. It's incredible how fast the blood flows.

So, while we are away in Malta and Italy, some expert will be working out what dose of radiation is required and in what direction - these beams are very precise and accurate these days.

The first treatment will be on 26th October, the first Monday after we return, with the last one 12 days later. I have been able to arrange the majority to be done at 5:15pm, o will be able to come straight home afterwards.

Also nearly there with the holiday stuff. We seem to have mislaid the Malta guide book - which is bloody typical! - so we will have to replace that tomorrow. My stock of film should be sufficient for the trip (including Rebecca's film needs), but I will also be taking the Nikon and lenses. Good job we have a hold case as well as the carry-ons this time :-)

The weather doesn't look too bad for either the One Challenge, or Umbria, so fingers-crossed.

The very interesting news this year is that Ivor at Red Dot Cameras in London has very generously offered a D-Lux 4 as the prize for the Challenge winner. That's a camera that retails at around £550, so well worth making an even greater effort than on a normal year. Prizes for second and third places too. So, t's going to be a good Challenge, with maybe 25 of us taking part.

Better do an update...

Well, it's been a fortnight since my last confession, and things are pretty much as they were.

My right leg swells during the day, and I am looking for some socks that have the wide, soft elastic at the top, to prevent the sock-top cutting into my calf, but apart from that, I am OK. Trying to stay positive :-)

Looking forwards to going on holiday, though...

Had a "Bupa Wellness" medical on Friday, which was interesting. That was the third one I have had in 4 years and, as before, I am fine apart from my blood pressure and cholesterol are too high. So maybe my heart will get me before anything else does. Probably not. The really interesting part is that all the blood tests show that I have the liver and blood of a tea-totaller. How does that happen? No, I don't know either.

Need to get our act together with regards to film, clothes etc for the trip. I am absolutely NOT going to be buying any over there, what with the Euro heading for parity with the pound again. It's pretty criminal really - last year we were getting around €1.25 to the pound and a few years ago, it was €1.50. Makes a trip to Eurozone 1/3 more expensive than before. Maybe we need to consider having the One Challenge in Britain again next year - it might be better for everyone!

We will see - I suspect that Venice will be chosen, as many people have already expressed an interest.

Now we are making some progress...

Had an extremely useful meeting with the guy this morning. Turns out he is a Consultant Clinical Oncologist, not a radiologist, but he seems to know what he's talking about.

We now have a plan...

He advises that only 2 1/2 weeks of treatment every day will be sufficient - they no longer do 4 weeks, as there is no benefit from the additional days' treatment, and the minimal amount of radiation that you have, the better. Lymphoma also responds well to very low doses of radiation too, which means that the side-effects are also minimised. So, maybe I will get away without the diarrhoea and cistisis (!), but only have the sunburned skin and tiredness. Time will tell, but it doesn't really matter.

Have arranged to have the treatment when we return from Italy, as there is really too short a time between now and us going away. I will need a further CT scan about 2 weeks before the treatment, so that they can establish exactly where the node is, and where to direct the radiation. They will tattoo the area, so that the point of treatment is consistent everyday. If they do this too early, then the disease may have developed in the meantime and then treatment might not be given to the correct place.

So, it's another CT scan on 9th October, treatment starting 26th October, running through to 11th November. It means that I might be limping around a bit when in Malta and Italy, but at least I won't be knackered and with the runs :-)

I'm happy with that, and in a more positive mood now that "something is being done".

Had a great walk up to Nine Standards yesterday - it's a bit tiring walking for 4 hours with the equivalent of about 6 pints of water strapped to your leg, but the views were worth it. This week's photo shows the Standards in all their glory - a place well worth a visit.

Update will follow later

I will post my first experiences in the hands of a radiologist when I get back from work.

Apprehension, not nervousness sums it up at the moment...

Appointment confirmed

9:30 Monday morning

Yesterday I collected a couple of earlier reports and a CD of the PET scan that was done a couple of months ago. I had a look at the scan images this lunchtime - there are incredible, and it's really fascinating to look through your entire body, slice by slice.

Going to be a decent looking weekend this week, so I think it's time to take the cameras out for a run. Going to Alsager near Crewe tomorrow to support the Lymphoma stall at a charity market. It's Lymphoma Awareness Week next week, so please be "aware" :-) And drop a quid in a box if you see someone collecting.

http://www.lymphomas.org.uk/news/news.asp?newsid=70

Finally....

Had a call from the radiologist yesterday morning, advising me that he will give me an appointment on Monday morning, next week. Couldn't tell me at what time... but someone would be in touch to let me know.

Well, no one has been in touch, so I phoned the hospital again this morning. Progress! The now know of me, but still can't tell me what time on Monday.

"We are going to write to you with an appointment"

"But, it's Thursday already. The letter will never get to me"

"Well, you'll have to phone tomorrow afternoon then"

Very helpful

I explained that some of us have other things that we need to organise in our lives, and can't be hanging around all morning waiting for appointments, but that didn't go down too well. It's as if they think that patients are just sitting around with nothing else to do

So, Monday, sometime, will tell what's next. One thing that is for sure is that we are no longer going to be able to fit this in before mid October.

Went to a meeting of the Lymphoma Organisation at Christie Hospital last night. I probably wasn't actually the youngest there, as I thought I would be, but I wasn't far off. They were very helpful and very friendly (why wouldn't they be?), and I will certainly go again next time, in November.

Broke a tooth this morning - need to get that fixed too.

Still waiting for the phone to ring...

Bloody radiologist hasn't called today, which means that things are getting pretty tight with regards to getting 4 weeks of treatment in before we go to Malta/Italy.

This is so incredibly frustrating - these people obviously have no idea what it's like to be on the receiving end of service like this.

Patience...

... is a virtue.

The radiologist

Just had a call to invite me to a meeting with the radiologist on "Monday evening" - time yet to be determined.

I look forward to hearing what he has to say, and what he has in store for me. But there is a sense that it's getting serious now, and it's hard to avoid a feeling of being overwhelmed. And this "watch and wait" is really quite difficult to take, sometimes.

It's been 4 months now...

There is a meeting of a Lymphoma Organisation Support Group in Manchester next Wednesday evening. I think I might get myself along to that and see what's what. Reading about radiotherapy on their website, I note that it is usually preceded by a course of chemo therapy, so I am wondering why this isn't the case for my particular example. While I am sure that the people looking after me know what they are doing, it would be good to understand what makes my case different from the majority. I will raise this on Monday when I see the radiologist.

"BUPA Wellness" phoned me yesterday to arrange my biennial MOT. I tried to explain to the booker at the end of the phone that I wondered whether this was absolutely necessary, but I suppose it will be good to know that my heart isn't about to give out before the rest of me does :-) That's sorted for the last week in September. If I'm busy doing "other stuff", then I'll cancel.

Escalation

Had an email from the haematologist's PA this evening. He has now discussed all the results with his colleagues and everyone concurs that I have follicular non-Hodgkin's Lymphoma.

So, today, he has referred me to a radiotherapist at our local cancer centre. I don't know how long it will take for him to get back to me, but I'd like to think that I should hear from them within a few days - this time next week at the latest. Got to get on with this - we fly to Malta in exactly 6 weeks.

So, in the meantime, I have arranged to see the haematologist again for a check next Tuesday.

Exciting times at the moment. There's a new camera being released by Leica next wednesday, and I was privileged to be given an invite to the launch in Germany. (That's the meeting I referred to last time - we can talk about it now :) ). Unfortunately, it has transpired that the above events have overtaken us, and not only do I have to be able to clear my diary at short notice, but the cost of the flights to Frankfurt are now prohibitive. I don't want to be the one that makes FlyBe its profit for that particular flight...

Maybe next time.

I have lots of friends looking out for me and supporting me near and far. I appreciate every one of the messages I receive - I know a lot of great people. However, someone I know sent me a message the other day to say that his partner has recently been diagnosed with ovarian cancer. And I thought I had it rough - what I have is nothing compared to the situation that others are in. So, my thoughts go out to her, and him at this really difficult time.

Time for an update, I think

Still waiting...

The haematologist has now received the imaging and slides from the first hospital, so that he is in possession of all the information available on my condition. After he has discussed same with his radiotherapy colleagues, he may be advising that I have the radiation treatment to the enlarged node in the groin. This might relieve the swelling in the leg. On the other hand, it might not.

He won't be able to discuss this information with his coleagues until 1st or 2nd September at the earliest - hence the wait. And the frustration. While I should be able to go to work whilst undergoing this treatment, I didn't get the impression that skipping a couple of sessions was the way to do it.

Now, there are two things, outside this problem, but affected by it, coming up in the next couple of months which are adding to this sense of frustration.

Firstly, and less importantly, I have been invited to a meeting on the continent in a couple of week's time. I would really like to be able to go, but it will require an overnight stop, so I would be out of the UK for two days. The reason why this may be an issue will become obvious in a short while.

Secondly, and much more importantly, we go to Malta and Umbria for 10 days in October on honeymoon. It's our 25th wedding anniversary, but since our original honeymoon was only 3 nights in a B&B in Dorset, this will have to be a very late proper one. I am not going to miss it.

So, if the treatment last 4 weeks, there is a "window" in September when this could be done. It will mean not being able to go to the meeting, but it will be over and done a couple of weeks before the Malta trip. If it has to be done sooner rather than after we come back from Malta, I want it done now. I don't want to be in the position where I finish this therapy on a Friday and go away the following week.

Hence the frustration - I can't keep nagging this guy.

The leg is the main issue that I have at the moment. It's still much larger than the left leg, and aches in a quiet way most of the time. The swelling in the groin is also aching, and while it's not affecting my movement too much at the moment, I do think that if the treatment works that would be a benefit. I suspect that my mountain walking days are numbered...

10 places to visit - one per year?

In no particular order

1. Drive across the Milau Bridge on a misty morning

2. Walk to Cape Wrath

3. Visit Cape Cod

4. Take the train to Venice

5. Go back to see my Great Grandfather on the Somme

6. Explore the West Coast of Ireland properly

7. See the Northern Lights - Norway?

8. Visit Copenhagen

9. Revisit Berlin

10. Spend a week in a small hotel on the Gironde at harvest time.

I would really like to go into the high Himalayas and see the prayer flags surrounded by mountains. Not very achievable though.

"basically there's f*** all you can do about it"

OK, so the surgeon has advised that if I am to have radiotherapy, it shouldn't be restricted to just the lymph node that is in the groin area, but they should also treat the other diseased nodes elsewhere in my abdomen. Given that there are quite a lot of them (according to the original CT scan), this is a different undertaking altogether.

He did question why the recommendation was for radio rather than chemo therapy, and I just told him what I was told this morning. The chemo might work, but it wouldn't cure anything and it would make me pretty sick while it was doing its stuff. The radio therapy is much more local, and while it does have side effects, they are nothing like the chemo ones.

You just have to trust that these people know what they are doing and get on and do it with/to you.

He is to write to both my GP and my haematologist with his thoughts, and make sure that the images from the CT scan are passed on to the second hospital.

We had a good chat about stuff actually. I told him that despite this being pretty crap news this summer, you just have to get on with life. "Agreed", he said "as basically there's fuck all you can do about it".

Which is pretty honest...

So, now we are back to the waiting game again, pending the receipt of the scan images by the haematologist. September will be here soon...

One meeting down, one to go this afternoon

Not good news, really.

Just a quick update following my meeting with my haematologist this morning.

I spoke with him about the swelling in my right leg and, after an examination, he concluded that there may well be a case for some intervention. One of the lymph nodes in my right groin area is about the size of a quail's egg and could be the cause of the lymph retention in the leg.

He is going to obtain the original imaging from the CT scan I had back in May (see blog posts passim) and then discuss with a radiologist colleague. He is 50/50 with regards to treatment, but I suspect that it won't take much for hi to be tipped 75/25...

The treatment will most likely be radiotherapy, every day, for 4 weeks, and we have pencilled in September as the time when we'll do it. That should clear me of the treatment before the trip to Malta and Umbria. So, let's wait and see (again...).

Bit of a shock though, and there's no guarantee that the treatment will provide the solution to the leg problem.

He has also examined the full results of the bone marrow tests done last month. There is a very small amount of disease in the marrow (that takes me to Stage IV of the disease), but not enough to worry about at this stage. No doubt, further marrow tests will be required going forward, but not just yet.

He did state that there was something else interesting in the results. Lymphoma comes in many forms, but it infects two different types of cells - B cells and T cells. The results from the path tests done on the lymph node removed, shows disease in the B cells. But, the bone marrow shows slight disease in the T cells. Normally, only one type of cell is infected. So, there is a very, very slight possibility that I actually have TWO lymphomas at the same time.

The chances of that happening to someone of my age are so slim that this just can't be the case. Apparently.

So, this afternoon, I now have a visit to the surgeon who originally removed the lymph node. I am seeing him after my GP requested his opinion on what could be done about the leg. Rather than just write back saying that there's not much that can be done normally, he will take another 10 minutes and £350 from BUPA and tell me to my face. I will NOT be bullied into having him do any more surgery on me. If that were to be come necessary I'd go somewhere else.

I think it might be time to get in touch with the Lymphoma Organisation to see what they can do for me. And what I can do for them.

Finally, for now, the haematologist is still talking "10 years". Which isn't good enough really - I want more than that. At least it gives me plenty of time to sort out a Bucket List - first draft of which I may share later. At least I hope it does.

Good meetings and more meetings to come

Had a good week, since my last entry here. Took a couple of rolls of Kodachrome for Stefan’s “Kodachrome Challenge” at the weekend, and posted them off on Monday. Restricting oneself to only taking red and yellow subjects is actually very interesting – I look forward to seeing what returns. It will probably take about three weeks to get back to me. 5 rolls left – I will take them to Paris with me next week.

Finally got round to hanging the last of the new doors off the landing. I have now replaced every door in the house, top to bottom, inside and out. The frame on this last one is so out of square, it’s not true. I will need to put another architrave at the head to prevent the daylight coming right through.

Had a good chat about potential new entry to the digital rangefinder market coming next month with a couple of the guys on Tuesday lunchtime, and a very good meeting in London on Wednesday. Long day though, getting up at 5:30 and back to the house at about ten past nine.

Booked the flights for Ed and Niki to go to Rome. Amazing how a £30 flight can turn into £320 for two, but that’s budget airlines for you. They will be in Italy the same week that we are going to Malta, which will be a bit odd.

Had some news about stuff this week too. I had seen my GP a couple of weeks ago and asked him about the leg situation. He wrote to the surgeon who first looked at me back in May, and I have now got an appointment to see him again on Tuesday next week, the same day that I see both the haematologist and the dentist. A full service, really. What I don’t want to happen is for the surgeon to do what he did last time I saw him for a consultation, which was get me in, under the knife, the next morning. If he needs to do any more cutting, he will have to wait until after next week and I have dragged my bones back from Gay Paree. I don’t think that this is very likely though – he can’t keep cutting bits of my lymph system out.

The haematologist has now had both test results from the bone marrow back, and since he hasn’t called me in for an unscheduled meeting, I am hoping that, for now, we have the all-clear. He did say when he saw me to do the test that if it did come back clear, then he wouldn’t want to see me until October, which is fine by me. I will ask him for a likely timetable of consultations, and whether I will be needing further PET scans, bone marrow tests, or what. I assume that he will need to be testing me regularly, but that’s one thing I’m not sure of.

Weekend looks set fair. There’s a VW car show meeting at one of the Cheshire stately homes sometime this weekend. Might pop over if I have some spare time.

Bone marrow biopsy result

I had an email from my haematologist last night with some results from the bone marrow biopsy. While he is still undertaking immuno-histochemical tests on it, he has stated that "if there is involvement, however, it is minimal and the marrow function is well preserved. All it means is that I may have to follow you up more frequently if the tests are positive."

So that's good news, I suppose and it does mean that we will be able to take a few days off in August after all. We have decided to take the Eurostar for the first time, which will be interesting, and a friend and colleague who lives in Paris has offered to take us to dinner while we are there, which will be great. Looks like a half decent hotel too, which will be a first for Paris. Never had much luck with them in the past - definitely a city where you just have to bite the bullet and put your hand in your pocket if you want to avoid a sweltering box room on busy main road...

Saw my GP today, just to update him, and ask about a secondary symptom that I have - a swollen leg. The thigh, 20cm above the knee is 5cm larger in diameter than the left one. This is due to the fact that the lymph system is knackered, especially in the region where I had the surgery a couple of months ago. A quick bit of research on the web this evening also says that is incurable too, so I'm not having much luck at the moment. My GP is to write to the surgeon on my behalf to see if there's anything that can be done, but it's not looking hopeful on that score. Oh well, there's always the bottle to turn to in times of crisis...

Have worked out that alcohol makes my condition worse. I read recently that, in some people with lymphoma, alcohol can make the lymph nodes and glands painful. This has been the case with me, so it looks like I will have to be even more moderate than I have been in the past :-) Another crutch removed... going to save a fortune!

Good news and bad news and gory details.

Saw the specialist yesterday and he had the results of the PET scan that I had a couple of weeks ago.

As I expected, my disease is at Stage III, as it is also present in my neck and my armpits. I knew this without him having to tell me, as in both areas feel the glands, as if recovering from a dose of the flu. The recommended therapy is still "no treatment" though. Just have to keep waiting. At least I don't have any "B" symptoms as yet - something else to look forward too!

He also did the bone marrow biopsy yesterday. If you've never had one, you just cannot know what it's like. A bit like childbirth, I suppose :-)

I had to lay on the table, with my trousers round my knees and my lower back exposed. Knees are drawn up to the chest in order to stretch the skin and muscles at the base of the spine above the buttocks. The skin is then anaesthetised and a needle inserted so as to mark the route for the biopsy needle. The doctor then takes this needle, which is about 5mm in diameter, hollow, about 100 mm long and with a t-bar handle. Very much like a gimlet, or the tool that cheesemakers use to extract a core of cheese from the middle of a round. With the tool (it's not really a needle...) he then pushes into the flesh, and ultimately into the top of the pelvis. Merely by pushing and twisting very, very hard, he gets the needle through the hard outer bone, and into the softer marrow inside. At least, that's the theory.

And this is where the good news comes in. I have very hard bones. So hard, that he was struggling to get this tool into the bone and through to the marrow. After about 20 minutes, in which time the patient has to keep still, yet push against the force of the tool, (so as to avoid being pushed onto the floor) he managed to extract a core of marrow about 5mm long - just enough to do the biopsy. Although it doesn't hurt as such, it's a very odd feeling having someone try to force his way into your skeleton. I could feel the pressure in my coccyx and even in my toes. It's hard work for both patient and doctor.

As always, the tests on this small piece of marrow ill take a couple of weeks to come through. I am hoping, of course, that the disease hasn't spread into the marrow already (that would take me to Stage IV), but we just have to wait and see, again. If it's clear, the doctor doesn't want to see me again until October. Otherwise, he'll see me straight away and decide what to do about the marrow.

The Leitax mounts arrived yesterday, as predicted, and I fitted them to the 28mm and the 60mm Macro. Although I haven't had much chance to play yet, I am very impressed so far. More at the weekend.

Leitax

Got an email yesterday to advise that the replacement lens mounts to convert my Leica R lenses to Nikon mounts are on their way (from Spain). Likely to arrive next week, I suspect.

While it will be a little daunting to take the back off the Leicas, the website from where they are coming suggests that it's not a difficult job. We'll see. However, I am looking forward to using the R-glass again, especially on a full frame digital.

The correct negative has also been sent to Washington, so maybe we can make some progress with that next week too :-)

Bone marrow

Been a good week this week.

Edward has graduated from Liverpool, and we went to the award ceremony at the Philharmonic yesterday. See the photo on the right. That's Ed with his girlfriend Nicki. He gave me a bottle of Laphroaig as a Father's Day present afterwards, which is very generous and for which I am grateful.

I have heard from my man's P.A. and definitely have an appointment to see him on 14th to discuss the results of the PET scan. I don't know what they are yet, until I see him, but I anticipate that we are in stage 3.

He also wants to do a bone marrow biopsy, apparently, so that will no doubt entail some more prodding and needling... Just leave yourself in their capable hands and do as you are told...

I am going to ask about whether there is anything I should be doing diet-wise, or other-lifestyle-wise. Stop drinking Laphroaig would be a good start, I suspect. :-)

Turns out I sent the wrong negative to the printer in the US who is doing my gift print from the Leica Forum guys. Doh! Have found the correct negative, and will AirMAil it out to him tomorrow.

Also, had an email from the guy that makes the replacement mounts for the Leica lenses so that they fit onto Nikon cameras. He will take 3 days to get them out to me. Not a problem, and encouraging that he felt the need to email me to let me know. Should have them early next week, I suppose. 14th probably.

Results of PET scan, and...

Pencilled in for an appointment next Tuesday at 11:30

Oh, and I bought the D700 today.

Both of which are good :-)

All I need now are the replacement mounts for my lenses and for the hospital NOT to have lost my PET scan information...

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...