A Seizure a Day Keeps my Home Far Away

On the seizure front, I’m averaging one a day. I started my new anti-seizure medication (lamotrigine) on Sunday. I’ll be increasing the dose every two weeks over the next four weeks; meanwhile, I’ll be weaned off the chocolate fire guard (phenytoin). Mr H agreed with me yesterday morning that tomorrow is a realistic release date.

On Sunday, I felt absolutely wiped out, so didn’t really do much (to be fair, I don’t do much any day except read Trump-related articles, and that’s not doing my health any good). Anyway, I awoke from a nap to find my husband in the chair next to me, which was a sight for sleepy eyes. Our date afternoons have fallen to new lows when I’m asleep for half of them and, during the other half, the highlight is going for a walk along the corridor. How I yearn for our Costa and Subway dates!

Yesterday was a less wiped-out day (hard to believe for those guests who saw me!) and this morning I’ve felt a bit more energetic again. The physiotherapist has said she’s happy for me to be discharged as, in between the wiped-out times and the seizures, I’m actually walking pretty well with my splint. I am also pleased to report that I am fully independent on the shower front.

Freeze Her Seizure

On 13 October, the date of my surgery that wasn’t, I was waiting to be called into theatre, having discussed what would happen during the procedure from a drugs point of view with Fran. (As a reminder, Fran was the consultant anaesthetist who knocked me out (with drugs) for my biopsy and was one of three consultant anaesthetists who gave me pain killers and sedatives for my “Awake” procedure.)

I was raring to go when a junior doctor came to see me to ask a question on behalf of Mr H. I confess that I’ve forgotten the doctor’s name due to the passage of time (and potentially due to Mr H having rummaged around in my brain a couple of weeks ago). Anyway, the question was whether I would consent to part of my tumour being used for a long-term research project. As this didn’t affect my treatment in any way, be it the amount of tumour tissue being removed or anything else, it was a no-brainer to consent.

Part of the tumour tissue was kept alive and went to Professor Cunningham at Newcastle University. My understanding is that the Professor will induce, monitor and treat seizures in the tissue as part of his research into why some brain tumours cause seizures and some don’t. I think that this is a description of the research. Needless to say, I am fascinated by the research and might contact the Professor to ask for a tour around the lab.

I picture a tiny little bit of the Squatter being tortured with electrical impulses and having a seizure on its own in a petri dish in the Professor’s lab. I wonder, however, if my ongoing seizures are due to a Voldemort-Harry link and am considering whether to withdraw my consent to the research project and see if that stops my seizures!

Snow Business Like Low Business

When I got to the Turners’ abode after my surgery had been postponed, I was talking about the research and my desire to have a tour around the lab. My Mam said she was surprised that I hadn’t asked Mr H to keep some of the Squatter. That made me speculate that, depending on how much Mr H could remove, I would be able to give bits of the Squatter as Christmas presents to special people (some might wonder whether that’s a threat or a promise).

That led to the inspired idea of putting a bit of the Squatter in a snow globe to be handed out as Christmas presents. I think that this could really catch on as a business idea. Low on the taste front, yes, but then America has just elected a bigoted, racist, vulgar misogynist as its next president, so I’m feeling like maybe my business idea might just be a success in this new world we live in. Dragons’ Den here I come…

Not Good (Part Two)

Apart from the bits of the Squatter that were sent away to Professor Cunningham, some of it was sent to the lab for further inspection and the rest was presumably thrown away (I forgot to ask Mr H to keep some for my snow globes).

Unfortunately, we found out on Thursday that the tumour was reclassified as grade three, not grade two as originally thought, so we are Moving on Up but not in a good way.

I had feared the news wasn’t great when Mr H asked me last Monday if Graham was coming in as he wanted to have a chat with us. Graham’s tonsillitis put a stop to that visit. Each day until Thursday, when Graham finally made it out of his sick bed (he had been unaware of Mr H’s desire to talk to us as I hadn’t wanted to worry him), one nurse or another would ask me if Graham was coming in, so my fears about what Mr H wanted to tell us were building.

The fact that it is grade three rather than grade two isn’t good. That said, it doesn’t really change my immediate treatment plan: it was always going to be radiotherapy after surgery, it is just likely to be a more aggressive programme. It will then almost certainly be chemotherapy (as opposed to probably being chemo when it was thought that the Squatter was grade two). What it means is a downgrading of my average life expectancy. I don’t know what the averages are for this grade as I deliberately didn’t ask. Call me a coward, but I don’t feel ready to be told.

Mr H said he had worried that my ongoing seizures were signs of my tumour not behaving as it should, and his fears were confirmed by the new diagnosis. He had confirmed after the surgery that, as was the usual case, some samples were sent off to the lab but he wasn’t expecting anything to change. I distinctly remember that I had heard him say something during the surgery like “I need to get this off for another biopsy”, which struck me as an odd thing to say to people around him who would presumably know that’s the standard procedure. I put that to one side in the immediate aftermath of the surgery, given my fatigue and seizures. On reflection given the news, I wonder whether he could see that all was not what it had seemed after the first biopsy and he wanted to gather up as many samples as possible for the lab. Maybe there wouldn’t have been enough tumour to go around for the snow globes. Maybe I’m using hindsight to make one plus one equal (grade) three.

The fact that I’m only sharing this now, five days later, might give you an indication of what a suckerpunch it was, even though I was expecting bad news. I said to Graham immediately after being told that I’ve got a brain tumour that there was a feeling of inevitability that it would be the same type as Graeme’s. That was why I was, if not happy that it can’t be cured, positive on hearing that it was a grade two.

My first thought on Thursday was therefore that, slowly but surely after the initial cautious optimism, I feel that it is inevitable that I reach grade four. As Mr H said, and Graham reminded me half an hour later, not all grade three tumours turn into grade four tumours and it’s impossible to predict which ones will. I know they’re right of course but it’s still a reason to feel down and upset after the news.

My second thought was that I assume that the odds of Leo remembering me have just dropped as the bell curve has presumably shifted downwards. I feel like I’ve not been taking anything for granted even within the realms of a terminal brain tumour. The shifting sands over the last few weeks have shown me that I have indeed been guilty of thinking that I have the luxury of time even since my diagnosis (even though this was a lot shorter time than I had hoped for; it’s funny how your perspective changes in a flash).

This news came at a time when I had spent nearly three weeks in a row in one hospital or another. I was already feeling a bit down about my lack of mobility, ongoing seizures and fatigue in the short-, medium- and long-term: about what it means, among other things, for my ability to spend quality time with those I love most in the world and leave a book of memories (and actual memories) for my children. In this context, this news, after those first two thoughts, numbed me and I felt nothing inside – literally, no thoughts were going around my head (good, bad or indifferent), which is unusual, if not unprecedented, for me.

I told my parents, who coincidentally were visiting at the time and didn’t know that Mr H wanted to speak to us until an hour or so beforehand. They waited with Jennifer in the day room, and then Graham swapped over so they could come and see me. I blurted out “it’s grade three” as soon as they walked in the room. I couldn’t think of any way to cushion the blow in the short time, maybe 10 minutes, between being told and seeing them. That said, no eloquent words could sugar coat the news.

I slept surprisingly well on Thursday night and then felt pretty low first thing on Friday morning as I started to think more about it, including those two initial thoughts. I chatted (and cried) with one of Mr H’s specialist nurses who came by just at the right time. I spoke to two of my closest friends over the weekend, have written this over two days (in between napping!) and feel ready to spread the joy more widely.

On the plus side, on the words front, It’s All Coming Back to Me Now.



9 thoughts on “A Seizure a Day Keeps my Home Far Away”

  1. Your bravery is awesome. Mine is not so and I have succumbed to tears that won’t stop. My love for you and your family knows no bounds. I’m sorry I can’t be brave any longer but maybe it’s ok now for you and us to be brave no more. Let the tears flow my lovely friend. Xxxxxxxxxxxxx

    Liked by 1 person

  2. Dear Rachel, have you ever listened to Leonard Cohen? His album ‘You Want it Darker’.. says everything you have just said…it makes me cry and I have just cried ( again) for you brave lady. X

    Liked by 1 person

  3. Sweetpea you are never a coward. Things are very difficult now but things can change. Your mind, body and spirit are an amazing team, your treatment, your food, maybe even the weather and the music you listen to and things like that all add up somehow. There is so much we don’t know. The right things might be lining up for you right now and see you coasting at the front of all bell curves. xxx

    Liked by 2 people

  4. In the face of your amazing courage it seems weak for me to still be in tears. Every day you astound us Rach with your wit, your stoicism and your absolute bravery. You are an inspiration and have inspired a following : your brainiacs will be there with you all every step.
    There are no words to offer to make it easier, and as Mrs W said, maybe that’s ok right now.
    Who knows what lies ahead… but know none of you will be facing it alone. xxx

    Liked by 1 person

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