Dear All,
The short news is that the tumour has not spread anywhere else and has not grown in the 5 weeks or so since it was detected. This is good as it means that the long-term prognosis is good
The long news follows. It is long basically because I've certainly got time on my hands!
Well the treatment has started. After they found the tumour there was a period of about 4 weeks of scans and tests. I've had 'nuclear' scans (a full body bone scan which shows my skeleton and which I want to copy for my web-site, and a 3D scan of my head which was extremely claustrophobic and unpleasant). They've done X-rays and CAT scans and blood tests galore. They made a mask (Hannibal Lector style) of my face and then did a simulation of the radiation with the mask and a CAT scan so as to be able to aim the radiation device accurately. The made teeth and gum shields for wearing during the radiation and also for use as an 'applicator' for a tooth gel to minimise tooth damage.
I was in hospital for two nights while they did an operation to tattoo all round the tumour so as to know where it was after it is shrunk by the radiation therapy. That was a full anaesthetic job.
There are several hospital departments involved (this is the main Vienna hospital) and everyone is nice and seems competent but their coordination is not so good so I ended up making much more visits than strictly necessary (at 90 minutes travel time each way).
Now I'm in the hospital for a week while they do the first week of treatment. This is radiation therapy (two bursts of about 40 seconds each) coupled with chemo-therapy. It is the chemo that is the reason that I have to be an in-patient — it's a 24 hour drip feed — removed only for an hour or so while I go for the radiation. There are only 5 days of this but I had to come in a sparrow's fart on the Sunday for a mini-operation to insert the catheter for the chemo under my collar bone and then when the five days of chemo are over they do blood tests and will hold me here a few days more until everything is settled down.
This whole approach is adopted mainly because it has a good success rate but also because it involves lower doses of chemo and radiation. So the side effects should not be too big. They expect none from the chemo but the radiation will cause dry mouth problems and maybe lethargy as it accumulates. I'm not likely to lose hair though my beard hair may stop growing for a few months
I'm feeling fine, though a little bored. But did bring enough books and my laptop — can get internet though rather slowly and can watch DVD's on the laptop so am OK for entertainment. Have my own room and the food is edible (though only just). Feeling restricted as I have to push the drip feed trolley thing around if I want to move more than a couple of feet. It is a powered thing so also have to plug it in — though it has a certain amount of battery power but essentially I'm fairly confined. The feeling of freedom when they disconnect me for a radiation session is amazing (gives me a chance to shower too and visit the hospital shops).
Overall I have confidence in the hospital but it is clear that their priorities are not the same as mine so there is a lot of waiting for things. I'm trying practising serenity and trying not to get exasperated over things which I will never be able to alter!
After this week is over there are four more weeks of radiation therapy (without the chemo) which is done as an out-patient (5 days a week). This should all shrink or even disappear the tumour. Then they wait 6 to 8 weeks and then operate to cut out the area where it was (plus a safety margin) — which is why they did the tattoo in the beginning. My first tattoo and nobody can see it and it will end up being cut out.
The operation timing depends on how I react to the radiation but looks like it will be early December. Might be sipping a liquidised Christmas turkey through a straw if there is a delay!
David
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