I had throat surgery on Friday to try and fix the problems created by the surgeon who did my lung op and accidentally nicked my vocal cords…
I’ve has 2 previous attempts to fix this by injecting fillers into the vocal cords but each time it wore off in a few weeks and I was left whispering with a very hoarse voice.
5 days ago on Friday, they tried a new approach which meant a GA and a much more invasive approach.
First, it seems to have worked! my voice is approaching near normal sound. I can’t shout or whisper but I can talk in a normal way and I sound like a normal person rather than someone who makes obscene phone calls 🙂
The downside is that it has hurt like hell but hey! ya don’t get owt for nowt.
The result is that you can expect to see me at exhibitions and conferences doing my best to upset everyone 🙂
LUMC, Leiden University Medical Centre are brilliant.
It’s 3 years now since I was told I had 9 months to live.
I’ve had my arse removed, a chunk of my liver removed and half a lung went this year.
The thing is that I’m doing well, as fit and healthy as I’ve ever been for a very long time. I cycled 40K yesterday.
I croak still, they’re working on fixing the issue with my vocal cords but I do voice exercises that help and in 8 months they will be able to operate to fix it if I’m not happy with progress in a non-operative world 🙂
The reason I blog about cancer is to try and encourage people to not give up. It can be a killer but giving up is the major killer, not the disease!
It’s a hell of a shock when you get the diagnosis, it’s not real, that hits later.
I worked to get everything sorted for imminent death and that’s been really useful. I’ve dealt with all kinds of things that people put off until it’s too late.
I’m more relaxed and happier than I have been for a long long time.
So if you are diagnosed with something horrible, chill, it’s not the end of the world 🙂
It’s been a long time since my last post and that’s because I’ve been battling with my third bout of cancer. It was harder this time, for a number of reasons. The main one being that the last one, a third of my liver removed, was so easy. This time there were a few delays, bad timing, the scan was done just before the Christmas holidays so everything following was delayed. Then they decided that keyhole surgery was not possible this time and that I had to wait for their ace slice and dice guy. I like keyhole surgery, the first 2 were done this way and the recovery period is much shorter, much much shorter. Anyway, I was cracked open, a translateral incision which means that he went in from my side and my back, spreading the ribs apart and removing bits that were in the way. 4 days after the operation they removed the drainage tubes from my chest and the next morning the remains of my left lung collapsed. I forgot to mention that when they started the intended to remove a single lobe but when they got in they removed a wedge of another lobe, lymph nodes, and bits from my thorax. so, to deal with the collapsed lung they had to insert a new drain. This was inserted from the top of my chest and pushed down until it bubbled and hissed. I was warned that they could only anaesthetize the start of the incision and that I may feel some discomfort as they inserted the metal tube. Discomfort! if I hadn’t already had radiotherapy on my arse it would have been the most painful thing ever and with no painkillers.
19cm of steel tube rammed in.
5 days later after it was removed I was allowed home. A total stay of 12 days instead of the expected 5 or 6.
It’s taken 10 weeks to get back to something close to normal but I still tire easily. I had to prove to myself that what my surgeon had told me was true that I would be back to normal as they were only removing stuff that didn’t work anyway!
Last week I flew to Croatia to go to Plitvice Lakes National Park and to walk/climb 12 waterfalls and lakes, something I’d have found hard before the op 🙂 I made it but spent the next day sitting on the Riva in Split recovering.
Of course, because this has been an ill-fated adventure, when they removed stuff from my thorax they managed to nick and paralyze my left vocal cords. I’m being operated on tomorrow to try and fix this which is a bit scary as I fly to LA on Wednesday.
The words I dread hearing, “we’ve found a small lesion in your lung”
I’d just had a scan that involved loading me with radioactive sugar after which I had to lie absolutely still, no twitching of fingers and toes! until it had been processed by my body. Apparently any muscle movement would use up the sugar.
They then did a full torso scan looking for anything that shouldn’t be there and sure enough there was something, smaller than 1cm. in my lung.
The first decision was to use radiotherapy to blast it which would have a 5cm blast radius but the radiotherapist said it was too close to both the Aorta and the nerves that control breathing. Hmm, heart attack or paralysis of the lungs, neither sound much fun.
The radiotherapist came up with an alternative. They’re going to insert a wire into my chest tomorrow and then using either microwave or HF they’re going to blast the lesion/tumour and this method will only create a blast zone of 1cm.
It’s kinda like bombing and minimising collateral damage. I had no desire to be in the “we had to destroy the village in order to save it” category!!
So it’s now a simple procedure with just the one night stay and that’s just because I’m having a GA.
I’m currently comparing the BMD MP and the C200 in detail, they’re very different cameras in lots of way and they both produce great images. I’ll be posting a detailed review of them on CML in a month or so.
They are very similar on paper but in real life just so different. I had hoped to include the Panasonic EVA in this test but they don’t seem to be able to get me a camera. Funny how if your “review” consists of shooting a few pretty pictures you can get a camera but if your test is almost a destruction level one you can’t…
I went to LUMC for my 2 weeks post-op check yesterday and talked with my surgeon
The good news is that they got the entire tumour and there is nothing left of it.
I am now clear until a future scan reveals something. I live from scan to scan now and will for the next 5 years, if I’m that lucky!
Once I’ve completed 5 years without a recurrence I’m considered clear.
4 more weeks of injecting myself twice a day with anticoagulant then I can live a “normal” life.
Get in, get the pictures and the job done and get out leaving a bit of a mess behind!
Not too bad, 7 holes this time but in a few months there’ll be barely a trace. 2 of the scars from the last Laparoscopy are visible in that shot, I know where to look, and one in the navel hidden.
The bag in the bottom right of frames if my constant companion.
So, I was part of an experiment here, they injected me with a magic potion the day before which was converted to nothing in the bits of the liver where there wasn’t a tumour and that when viewed under UV light glowed where there was a tumour.
As they operated they switched back and forth between the light sources and could even mix them. They cut until no blue glow was left.
Apparently it’s the last little bits that cause all the grief, using a conventional approach they have to cut far more than just the tumour to make sure that they get it all. Using this method once there is no blue glow there is no tumour.
They took sample of the area left and the results from the path lab are clear.
I haven’t tried to line the shots up but it’s pretty cool as it is!
I couldn’t get the video or actual screen grabs, these are my scans of a priny I was given, the real thing is pretty clear.
A great title for a horror movie, unfortunately it’s reality.
My latest ultrasound, MRI & CT scans show a tumour in my liver.
On hearing this I looked up the 5 year survival rates for liver cancer and found that it’s 7%, not good news.
However, even though the tumour is in my liver it’s a metastasised colorectal cancer which is what was already successfully removed in December. So, tomorrow I will have about a third of my liver removed. This should get me back to where I was at the start of the year. i.e. getting regular scans to get early detection of any more tumours and to have time to deal with them with an 85% 5 year survival rate.
There is a cool thing about this, I’m part of a research project at Leiden University Medical Center, I’ve been injected with an agent that will make the tumour florescent in UV light. I will have an extra unit inserted during my laparoscopy, instead of 4 units there will be 5. The extra one being a UV light.
The process is that my liver will process the material I have been injected with and the tumour won’t. This makes any tumour glow green and let’s them remove all the infected cells but only the infected cells.
I’m in for 3 to 5 days and will be back to normal in three weeks.
So any work I’m committed to in November will stand.
LUMC is an amazing place, it’s huge but it’s the first time I’ve given visitors directions like these…
Go in the main entrance, go to the right of the escalators to the shops and restaurants and go down the corridor past the art gallery to the lifts with the red doors.
Shops! Restaurants! Art Gallery!
Oh and I’ve asked for a copy of the video of my glowing tumour. I’ll post it here if I get it.
I’ve had to pause on the camera evaluations, well, the uploading of them, not the assessment of them.
I just wonder how many people will look at them in full res or even download the files to be able to judge them properly. It’s interesting the way some cameras change colour from under to over exposure and how the noise and clip varies. The thing is in some cases you really need to look closely.
I’m now making all the QT files that are uploaded to Vimeo from 16 bit EXR’s that have been generated in ACES space in the manufacturers own software. Of course there is one exception to that but I’m doing the best I can with that!!
There are some cameras that look great on a quick superficial look but on prolonged examination show some odd flaws. I’ll be uploading the EXR’s at the end of the process for those people crazy enough to want to see the full beauty, or horror, of the cameras.
I was once again struck by the differences between the Netherlands and the UK, I went out to dinner last night with a group of people from my apartment block, by a group I mean 13 of the 14 apartments here joined us, 7 floors 2 apartments per floor and the only people not to join us were the ones moving out next month. It was a great night and it’s an amazing mix of people. One of them is a senior news director at De Telegraaf and she told me that they’d run my stupid thief video on their website and had got over 5 million hits!!
I also went for my bi-annual check up, this will be a feature of my life for the next 5 years. Ultrasound and X-ray, no sign of new tumours which is great but something in my liver so I’m off for an MRI in a week or so. Just a precaution but I can’t get over the speed and thoroughness of the medical system here.
In the UK I’d never have gone out with my neighbours like this and I’d be waiting while permission was granted to put me in line for a checkup. Actually I’d probably be dead because I’d be waiting for the results of tests finally done after a 6month wait.
I saw my surgeon this morning, exactly 14 days since the operation.
He showed me the Path results and they were “interesting”, he removed a section with 22 Polyps, 3 of which were malignant. The bad ones were down to the end of the rectum. The big news was the tumour he removed that was right at the exit of the rectum. 5cms, I’ll say that again 5cms! of malignancy.
Well no wonder cycling hurt if I was sitting on a nasty 5cm block of poison!!
Anyway, It’s all gone, no trace of any indicators in my blood tests, I go back in 3 months for another blood test then after 6 months and staying at 6 month intervals for 5 years.
As far as my surgeon is concerned everything is healing well, the stitches will dissolve over time but I’ve got to back off a bit on the walking, stay at 2 circuits of the gardens a day for a week or so. I can also sit at my computer and work for short periods.
My lovely nurses will continue to visit until they’re happy with my stoma and they will also keep checking the stitches.
I have to do a huge thank you to a lot of people now, the support on FaceBook has been amazing, you really have all helped to keep my spirits up. I’d also like to thank all the nurses on c3 at Langelland Zickenhuis they were absolutely incredible.
I’ll not be at BSC or BVE but I will be at NAB, hope to see a bunch of you there.