Big week, next week...

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

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

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

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

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

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

But next week, will be a big week.

Update while waiting for my brake fluid to be changed

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

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

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

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

More next week when I've seen my man.

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

Belated Happy New Year!

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

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

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

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

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

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

More later...

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.