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