Personal Blogs

Today I saw the oncologist to discuss what happens next.  She's a very nice lady.

Better than that, though, today I saw a picture of my brain!  Yay!  I do have a brain and it looks pretty much as it should.  Well, excepting the meningioma.  It's a funny shape - the meningioma, not my brain.  It's in a sinus (an 'empty space'), so it's kind of squished itself in to that gap, with the bit poking through to my nose (which isn't there anymore as that's the bit they grabbed to biopsy).  But, roughly speaking, it's a similar size to my eyeball.  Which means we're probably safe to assume it's been there 20 years.  Which is a very strange thought.  (It is still most likely a coincidence that 20 years ago is when I started getting migraines.)

What was great was that in the picture the splodgy white tumour had a black perfect circle in it - my hardly affected carotid artery, going through the middle of it, carrying blood to my brain just like there's nothing unusual going on at all.  (As and when and if I get a copy of any pictures for myself, they will of course be shared!)

We discussed the treat-now versus the watchful-waiting options.  She agreed that neither option was clearly right or wrong, but she picked up on the fact that I was leaning more towards the treat-now choice (plus I said the neurosurgeon recommended this).  There are risks with treating now - long term the main ones are that treatment might damage the optic nerve and might damage the pituitary gland.  Countering that, though, is that if the tumour is growing (and given that the different size pupils symptom is relatively new, that's not a wild assumption), it's soon going to start squishing the optic nerve and/or pituitary gland anyway.  Any damage the tumour does won't be reversible, so I think let's get the treatment done and out of the way.

The risk of the optic nerve damage in particular is low.  Other eye risks - cataract and retinopathy - are also unlikely, but eminently treatable should they happen (plus, this is my right eye we're talking about, i.e. the fairly useless one!)

Even the more likely long-term side effects are very easy to deal with, e.g. the pituitary is quite likely to lose some function, but it might take several years for that to happen.  That would be something like pituitary stops producing thyroid stimulating hormone, thyroid then stops producing thyroxin ... so I take replacement thyroxin in the form of a tablet, job done!

There will be a new CT and MRI done during the planning stage - which means we can see if anything has changed in the last couple of months, but also use that to plan the treatment because we need to know the exact shape/location of the tumour.  The previous scans are no good for that now, because I've had a lump chopped off since then in the biopsy!

The treatment machine used will beam radiation in to my brain from all different angles, which will converge on the very precisely modelled exact location of the tumour - so the healthy bits of my brain will get a little bit of treatment (which, because adult brain cells don't do much growing, will have pretty much no effect) but the tumour gets loads of treatment.

During-treatment side effects are likely to include tiredness - I'm lucky in that I'm looking at medium-intensity radiation, which will hopefully mean this won't be at the most severe end.  There may be some nausea, because of what bits of my brain are being hit (but there are anti-sickness pills if it's a problem, though she recommended trying ginger biscuits first, which sounds perfectly reasonable to me.  Maybe I'll get some in anyway, just in case).  There may be some patchy hair loss, you can imagine it as a 'headband' around at eye level, i.e. where the beams will be going in.  Because of my hair style, that won't be a problem - the bits on the top won't be affected, and can hang down and cover any baldy bits until it grows back (which might be some time after treatment ends).  The skin in these areas might get a bit stroppy, so it's probably best to wear a hat when I'm outdoors for the year or so after treatment, yay, an excuse for hat shopping!  My eyes might also get a bit dry, but that's another really easy fix with eyedrops.

Essentially none of these side-effects seems to be so bad that not treating seems worth it.  Not when you consider that I'd be constantly wondering if that was the right call, and wondering if irreversible eye damage is happening, and so on.

The treatment will be five days a week (Monday to Friday) for six weeks.  Time on the treatment table will be around 25 minutes, with actual treatment being up to six minutes of that.  This will be at Addenbrookes, so around 45 minutes drive each way but allow an hour to be in plenty of time, etc.  In effect, I can probably write off half a day for six weeks.  I won't be able to drive myself - I'm not allowed to for the duration of treatment - but I already appear to have a team of volunteers to get me there and back again (though if you fancy joining in, you'd be more than welcome!)  And there's virtually door to door public transport if necessary, so I've got no worries for getting there.

We have a holiday booked towards the end of July.  The oncologist looked at the dates, said we'd try to get the planning stuff done before the holiday to start treatment after the holiday.  Our next holiday is then seven weeks later.  If all goes well, we'll be able to squeak the treatment in to that gap, but we might not be able to start exactly when we want.  So the next holiday, in September, might need to be cancelled/delayed/etc.  But if that's the worst side-effect of treatment, there's not really much to complain about, is there?