Edited by Sarah Cornell, Monday, 29 Jun 2015, 17:35
A couple of people have asked, and all of a sudden things are happening, so here's an update to tell you all what will be happening, but now with some added dates!
Planning
There are things we want done before starting anything. This includes getting a new set of visual fields tests and a set of pituitary function blood tests. This will give a baseline to measure future changes against. While the visual fields tests I last had done were only at the end of April, it'll be worth doing just to check for any (or, far more likely, no) changes.
Similarly I'll be having another MRI. It's not expected that there will be any changes in two months but that too will be good to confirm. And obviously there will be a change in that the lump they biopsied will be gone.
That's been scheduled for Friday (3rd). I've just had a phone call saying that after the MRI, could I please go along to the Radiotherapy department for mould-making and the planning CT.
Mould-making is done with a thermoplastic mesh that gets warmed up and then put over my face and shaped to fit. Radiation and a mask - surely this time I guaranteed development of super powers? But really, it's to make sure that when I am treated, my head is in the exact same place on the table every day - it's not much use having seriously sophisticated radiotherapy machines guided by computer imagery if you can fidget! Getting lined up right is the main reason why, for my six or seven minute treatment, I should expect about 25 minutes on the treatment table.
I found this picture online of a radiotherapy mask - note that they often cut holes in for eyes/nose/mouth, so it doesn't have to be as claustrophobic as it looks.The other good thing about a mask is that it gets any position marks,
rather than me - people having radiotherapy often get tiny marks 'tattooed' on
them, but as it's my face they won't be doing that, which is nice.
So that's:
Visual fields - TBC
Blood tests - TBC
MRI, mask and CT - Friday 3rd
Treatment
I don't know when treatment is going to start yet. The earliest it will be is 27th July, in order to be after I get back from holiday.
Addenbrookes has two rather snazzy tomotherapy machines, which I gather are pretty much the best things ever in terms of delivering accurate radiation to one place while leaving the bits surrounding it as unradiated as possible. The machine incorporates a CT scanner, so they can look at what they're doing as we go along - and, no doubt, check I'm still laying in exactly the right place!
Here's what one of these machines looks like, which is not disimlar to the giant Polo look of a CT scanner:
Follow Up
After my six weeks of Monday to Friday treatment, obviously I'll have ongoing follow up for any immediate side effects.
Longer term, there will be an annual blood test for pituitary function. I don't know how often I'll have to have the full visual fields testing, but my optician will do a basic visual fields test as part of my annual check up anyway (and he will jump on anything that even remotely concerns him, knowing him).
Follow up scans to look at the tumour will take place at six months, one year and two years. There might be one at three years, but in any case there will be one at five years. There might be one a seven and a half years, and there will definitely be one at ten years. If, at the ten year scan, it's still doing nothing, then they will consider discharging me and this whole palaver will be well and truly over.
Things are happening!
A couple of people have asked, and all of a sudden things are happening, so here's an update to tell you all what will be happening, but now with some added dates!
Planning
There are things we want done before starting anything. This includes getting a new set of visual fields tests and a set of pituitary function blood tests. This will give a baseline to measure future changes against. While the visual fields tests I last had done were only at the end of April, it'll be worth doing just to check for any (or, far more likely, no) changes.
Similarly I'll be having another MRI. It's not expected that there will be any changes in two months but that too will be good to confirm. And obviously there will be a change in that the lump they biopsied will be gone.
That's been scheduled for Friday (3rd). I've just had a phone call saying that after the MRI, could I please go along to the Radiotherapy department for mould-making and the planning CT.
Mould-making is done with a thermoplastic mesh that gets warmed up and then put over my face and shaped to fit. Radiation and a mask - surely this time I guaranteed development of super powers? But really, it's to make sure that when I am treated, my head is in the exact same place on the table every day - it's not much use having seriously sophisticated radiotherapy machines guided by computer imagery if you can fidget! Getting lined up right is the main reason why, for my six or seven minute treatment, I should expect about 25 minutes on the treatment table.
I found this picture online of a radiotherapy mask - note that they often cut holes in for eyes/nose/mouth, so it doesn't have to be as claustrophobic as it looks.The other good thing about a mask is that it gets any position marks, rather than me - people having radiotherapy often get tiny marks 'tattooed' on them, but as it's my face they won't be doing that, which is nice.
So that's:
Treatment
I don't know when treatment is going to start yet. The earliest it will be is 27th July, in order to be after I get back from holiday.
Addenbrookes has two rather snazzy tomotherapy machines, which I gather are pretty much the best things ever in terms of delivering accurate radiation to one place while leaving the bits surrounding it as unradiated as possible. The machine incorporates a CT scanner, so they can look at what they're doing as we go along - and, no doubt, check I'm still laying in exactly the right place!
Here's what one of these machines looks like, which is not disimlar to the giant Polo look of a CT scanner:
Follow Up
After my six weeks of Monday to Friday treatment, obviously I'll have ongoing follow up for any immediate side effects.
Longer term, there will be an annual blood test for pituitary function. I don't know how often I'll have to have the full visual fields testing, but my optician will do a basic visual fields test as part of my annual check up anyway (and he will jump on anything that even remotely concerns him, knowing him).
Follow up scans to look at the tumour will take place at six months, one year and two years. There might be one at three years, but in any case there will be one at five years. There might be one a seven and a half years, and there will definitely be one at ten years. If, at the ten year scan, it's still doing nothing, then they will consider discharging me and this whole palaver will be well and truly over.