Amy's Brain

The egg in my head

Update 19: Trouble on the horizon


“I’ll look after you Mama, I promise”

An update, I don’t much feel like writing this one but I also know that there are lots of friends who care and I need to let you know what’s going on.

I had my 6 monthly scan last week in Liverpool. As usual, my 6 monthly scan was over 7 months after the previous which irks me but I don’t think it really matters.

The experience was all round a bit better this time. We left Ivy with a friend (thanks friend!) at 6.30am and Dee and I drove up to Liverpool in mum’s tiny little Peugeot as our comfy car is having MOT muddles. Dee and Ivy both had something quite flu like but Dee soldiered on in her accompaniment duties which I really appreciated. I don’t think it’s a sensible solo activity. The MRI was more pleasant this time for two reasons

  1. Administrative cock-up meant I got a short scan instead of the usual in depth one so it was only half an hour in the tube instead of 50 minutes.
  2. I asked if Dee could come in with me, I don’t know why I didn’t ask last time! As we don’t have Ivy with us she might as well. She tried singing to me but I couldn’t actually hear a thing of course. But she could hold onto / stroke my foot which felt really nice. It meant I could spend my half an hour remembering how much I love her instead of how much I fear the results of the scan. Will try that again next time too!

I feel ever so privileged that I get to hear the results on the same day, this is not the norm, many patients go in for a scan one day and wait for an appointment 2,3 or 4 weeks later to get the results. I find that prospect nightmarish, I hate the thought that someone is sitting there knowing exactly what’s going on but I don’t. So we go back to the familiar waiting room. Dee points out that hospitals must be horrid places to work. There’s no natural light at all and a big room of people in varying Shroedinger’s cat states of aliveish or deadish, waiting for news. The consultant appointment is over an hour late, but this is normal so we aren’t surprised. We wait and snack, chat and wait some more.

I like my consultant Mr.H, he’s a good chap. He starts with the usual “How are you?” Which I always find to be a bit of a daft question, I’m here so he can tell me that! I feel great, but that’s not really the point is it? However, I always try and be polite, I really think it’s a good strategy to be nice to the people who are trying to save my life.

Results: There has clearly been some growth over the last 2 years – he has 4 images up on the screen of my last 4 scans and it’s small but definite change. This really shouldn’t be surprising, it was growing pretty rapidly before 95% of it was removed it would be daft to assume the remainder would stop growing now. I’m sad, because I can no longer say “The results are as good as can be hoped for” which has been my stock answer of the last few scans.

Mr H would like to operate, not now, we’ll wait for one more scan to have another look, next scan will definitely be a full 50 minute one. I plan to take my foot stroker with me though which will help. The positive side, if I look hard for one is that I can’t be 100% sure of his motivation. He has a new toy to play with (Intraoperative MRI) and I suspect that a portion (20:80, 50:50 or 80:20?!) is that he wants to take out more of the original tumour that was missed first time around. I’m not left feeling entirely certain that the proposed surgery has much to do with new growth or just that he wants to tidy up /improve on the last one and the new growth is the perfect excuse.

So it’s not terrible news really. This is not the feared “beginning of the end” moment. I’m still terrified that one day I’ll have a scan and we’ll hear about progression to Grade3 or Grade4 but I try not to think about that even though it’s the norm. I’m still hoping I’m going to be lucky one.

So what next? Wait for the next scan which is due in 6 months but expected in 7, prepare my list of questions and expect surgery in autumn / winter. It’s better than the other options – I’m resistant to chemotherapy as I’ve heard horrid things, radiotherapy to the brain is a terrible idea unless it’s totally necessary as it has a horrid side effect of giving the patient dementia, killing off plenty of health cells on the path the the tumour. I recovered from the last surgery in 4 weeks so doesn’t feel too bad, but Mr H says even though it was OK last time it could be awful 2nd time. I try to remain optimistic. Hoping we can schedule it for September/October time so I can watch the Rugby world cup during my recuperation.

The Photo: This made me cry (again). Ivy and Dee were snuggled up under a blanket a day or two after scan day. In the snug keeping warm, resting and watching TV whilst they’re recovering from flu. I wondered in and overhear Ivy explaining to Dee “Don’t worry Mama, I’ll look after you. I promise”. Sounds fairly harmless but didn’t feel it. I know they can, and will look after each other, we have a house full of love. The love will definitely outlive me and that’s as good as it can be. It breaks my heart though, to think that I won’t be there to look after them, I really want to be there and I don’t know if I will*. The statistics are against me, so we are left with hope and optimism and sometimes that’s pretty hard to rely on. I know that love is a bottomless well, it can be given and given and the more you give the more there is. Unfortunately, it seems that grief too is bottomless, I can’t cry it away – the more I feel the more there is. Grief also rears it’s ugly head in the most joyful of moments which is really fucking annoying because it sucks the joy away from me before I get a chance to feel fully joyful. Don’t worry about me though, I have a therapy appointment tomorrow that’ll probably help get a handle of this stuff. I’m doing well, as well as can be expected.

*Important don’t even think about uttering the line “Oh none of us know if we’ll be here, any one of us could be hit by a bus tomorrow”. Fuckidy fuckidy off with the bus shit.