Personal Blogs

A week and a bit of getting back to normality has now passed.  My normal life being boring and normal, there’s not a lot to blog about.  I’m back at work full time until I’ve decided what’s happening next, and life is life, you know what it’s like: the lawn needs mowing, the cat wants attention, books need reading, though it all feels very strange.  I think that’s because May was so Very Hugely Abnormal, June suddenly seeing a reversion to near-normality is causing something akin to culture shock.

The last week has been wonderful.  For those who knew and were waiting for results as eagerly as I was, it’s been great to pass on the good news.  It’s just been a week of joy and smiles and “let’s all go to the pub for lunch” and just most wonderful relaxation compared to the preceding 27 days. I shall try to capture the momentum of this happiness and turn it in to Doing Stuff, such as the things I’ve had on the mental to-do list but never got around to doing anything about and they’ve now been put in to a little more perspective.

In a summary of the medical situation: The headaches/migraines are simply headaches/migraines.  There is no raised intracranial pressure, they are not caused by the tumour (a tumour causing raised intracranial pressure gives a distinct type of headache, which is not the pattern my headaches match).  I am now keeping a full headache/trigger diary – one I fill in every day and say what happened, not just one I fill in with what I happen to remember when I actually get a headache (from the latter you’d learn that I ate chocolate in the 24 hours before both of my migraines this year; from the former, you’d also see I ate chocolate practically every other day of the year too...)  This has the potential to go to a neurologist at some future point for investigation, though I’m pretty sure I’ll leave that until after the current nonsense is settled down.  After all, if there are treatments or investigations or this or that or the other changing then that won’t help pin anything down.

The eye problems all relate to the third cranial nerve and are all consistent with that nerve being affected by something, and there’s a fairly obvious culprit for what that something is!  It’s therefore very likely that the eye problems are caused by the tumour (for it not to be the tumour, I’d not only have to have the unlikely brain tumour that happens to be in the exact right place, but some other unlikely condition too – possible, but so unlikely that we can reasonably assume that’s not the case).

Radiotherapy is the treatment.  The choice is: I can leave it a while – see how the tumour is growing; or I can go for it now.  If we watch for a while, we may find the tumour is doing nothing, thus the radiotherapy is unnecessary.  The thing is, if it is growing, then not treating it risks the eye problems getting worse.  So it’s one of those things where you can argue either way.

The neurosurgeon said if it were him, he’d treat now; obviously I will take the advice of the oncologist* who I’m seeing next and see what her opinion is.  Treatment while my vision is broadly unaffected rather than risking that getting worse seems a good plan to me.  On the other hand, my right eye has been pretty useless since birth, so there’s not necessarily a great deal to lose (...unless it deteriorates in a way that gives me double vision, and then what there is to lose is my driving licence, which I’d rather keep if at all possible).  For now, about the only time I have noticeable vision problems is when people are doing eyes tests and shining stupidly bright lights in my eyes and so on!

So all in all, back to waiting – for the oncologist appointment and deciding on what happens next.  But it is now waiting without any urgency, and without the Great Big Scary Unknown.  And in the meantime, boring normality enjoyably reigns

* Yes, oncologist.  In popular parlance, an oncologist is a cancer doctor.  But in scientific-speak, an oncologist is someone who treats tumours.  Clearly, the bulk of an oncologist’s work is to do with cancer, but they also deal with non-cancerous tumours too!  Everyone seems to be saying that this next person is a ‘radiologist’ which I think is simply to be not-scary, but then a copy of the referral letter turns up with ‘clinical oncologist’ on it so all they’ve done is use the potentially-scary word when I’ve got nobody around to correct me had the word panicked me!  Anyway, whatever title we give her, this particular lady is a specialist in radiological treatment of central nervous system tumours, so exactly who I want to see.