On the morning of the appointment with the Neurosurgeon, we dropped the kids off with my ever helpful parents, and drove to the clinic in silence. What was there to say? I was bricking it and couldn’t think straight enough for chatting. We arrived early and booked in.
A TV in the waiting room was showing ‘Wanted Down Under’, a daytime TV show in which a UK family pretend to be torn over whether or not to emigrate to Australia in order to get a free holiday out of the BBC. As today’s couple tried to look sufficiently concerned about the price difference between bananas here and in the Antipodes to justify their airfares, I looked around, hoping to see what brain tumour people look like. Normal, appeared to be the answer. There was a normal looking mother and daughter. A normal looking elderly couple. There was no way to tell with either pair who was the patient and who the supporter. Then someone slightly less normal walked in. A prisoner, escorted by three guards, one of whom was handcuffed to him. Even he didn’t look particularly brain tumoury. He looked like an accountant. But it’s always the quiet ones you have to watch, isn’t it?
Prior to the appointment, I decided on a best and worst case scenario, so that the actual situation would sit somewhere between them, and that would hopefully appear manageable in comparison.
The best case:
- It’s all been a stupid mistake, there’s no tumour or growth or in fact anything at all.
- I just imagined the seizures and several days in hospital.
- I’m fine, go home and carry on with life as normal.
The worst case: (and it had to meet all four criteria to qualify)
- I’m going to die
- In agony
- There’s absolutely nothing that can be done to alleviate any agony.
I tried to make both cases equally improbable, but recognise the best case scenario was perhaps pushing it somewhat.
After what seemed like several geological ages, it was our turn. Damian, the Neurosurgeon shook our hands, and introduced us to Sarah, one of the Neuro-oncology specialist nurse team. I tried to lighten the mood by saying I hoped their professionalism would extend to still providing the best possible care even if I was so nervous I spewed in one of their laps. The joke didn’t just not land, it flew straight out the window and shot in to the stratosphere.
Damian: “Oh goodness! You’re going to be sick? Do you need to leave the room? A drink of water?”
Me: “Um, no. It was a joke. Sorry”
We turned to the MRI scan on the computer screen. Unlike poor old Steven, Damian knew exactly what he was looking at. He talked us through the scan, pointing out the swelling in my brain, finishing at the very top of my head, tucked just under the skull, a bright, tiny 2mm long tumour sitting in the motor strip of the right hemisphere of my brain.
A & I have a very dear friend with a brain tumour. I would not presume to tell his story here, but we both knew that when his was discovered, it was 5cm long – 25x bigger than this one. For the second time in as many weeks, I incorrectly thought an aspect of my medical condition was good news.
Me: 2mm? That’s titchy! That’s got to be easy to sort out then, yes?
Damian: Um…not necessarily. Not all parts of the brain are used equally. I could remove half your temporal lobe and you’d barely notice. The people you live with might, but not you. [He and Sarah exchange a look that says losing half your temporal lobe actually causes a metric fucktonne of problems for the people you live with, and she’s the one who has to help pick up the pieces.] Your tumour is in a highly eloquent area of the brain, where every cell counts. That’s why it has caused several seizures despite its size.
So this tiny tumour, barely bigger than a full stop, is growing in/on/around the cells that control movement in my left hand. Or, due to the vagaries of brain taxonomy, it could possibly the cells that plan movement in my left hand. It’s like the difference between the actual motor and the starter motor in a car I reckon. Either way, it’s what’s medically known as ‘a bit of a problem’.
Damian: You have three options. Firstly, do nothing. Some people in your position come for this meeting, and want no more to do with us. We never see them again. I don’t recommend this though.
Me: Emotionally, I can definitely see the appeal, but my primary concern has to be the kids. My job as a parent isn’t done yet. I’ll do whatever is necessary to be around for them as long as possible.
Damian: OK, so the second option is a biopsy. We can’t tell from the scan what type of tumour it is, it’s too small. Finding out will enable us to provide the most appropriate treatment for the type. The third option is to move straight to surgery and/or radiotherapy and chemotherapy.
Damian’s preference was very much to do a biopsy as a first step. I asked if he could just whip out the whole tumour while he was there, but apparently, brain surgery is slightly more complex than that. Chuh. A general anaesthetic and considerable faffing about was required for the biopsy, whereas if the tumour was to be surgically removed, I would need to be awake during the operation, to check with each step that I could still move the left side of my body. Trying to do both at once would take about 10 hours. It was either or. Damian thought the risk of causing permanent weakness or even paralysis on one side meant that full surgery wasn’t the best first step, especially as it would make me less able to tolerate the radio and chemotherapy that would come next.
Weirdly, my only question at this point was:
Will I be able to hear the circular saw going through the skull? That would be fairly offputting.
Damian: No. We sedate you for that bit. No one ever complains. Most people find the experience pretty interesting.
So I agreed to a biopsy. Within seconds, Damian gave me a pre-operative assessment appointment for 3 days later, and a date for the biopsy the next week, and outlined all the various risks of the procedure. This was all moving way too quickly. It would be three weeks to the day from my first seizure to brain surgery. I think, had I arrived in Casualty a few hours earlier after my second seizure, I’d have had an MRI and been reviewed at that day’s MDT meeting, and the whole treatment time span would have been truncated by another week. The pace of treatment is enough to leave you breathless.
Sarah then handed me this booklet.
Again, I damn near puked with fear, but I now think that the instant that booklet left her hand and came in to mine was the moment I finally got it. Yes, this booklet is for me, and it’s for me because I do have a brain tumour, and everything may not be fine. Sarah saw my face. “I don’t think there’s anything in there that will scare you” she said. I didn’t believe her.
After the appointment, we really knew not much more than we had the day before. The best case scenario had been fairly comprehensively trashed, but most of the worst case was still relatively intact. The limbo would continue.
When we got home, two letters were waiting for me on the doormat. One with appointment details for the pre-op assessment and one with appointment details for the biopsy. Three options indeed! It was a complete stitch up. Damian, you tinker.
It took a couple of days, but when I finally screwed up the courage to read the booklet it was excellent. Clearly written, it simply explains without excessive emotion or hyperbole what is happening, what could happen and what can be done about it. It was passed around the family, and we all found it informative and reassuring. I’ve since found all Macmillan information to be similarly good. They are a great bunch of lads. Please continue to support them in all their cancer and cake related activities.