What a day. Be still, my beating heart. Actually, sod it, keep on racing. If I can’t enjoy days like Thursday, I might as well give up.
Bring Me Sunshine ☀️
My kids. My world. Here. With me. Cuddles. Smiles. Bursting. 😍😘👨👩👧👦💁🏼👶🏼🦁🎉💜💛🌟🌟
The Great Wash
These little bird-resembling bad boys were quickly removed from the Mining Site on Thursday morning.
Some of the staples were a bit matted with blood and mixed in with a bit of hair and wallpaper paste (from the 22 electrodes attached on Tuesday). Even so, their removal only just warrants an entry on the pain register of this journey because of the (amazingly) slim pickings to date. It certainly ranks a distant second to the blistered foot of my Elvis Impersonation of Friday night.
There have been various questions (and disbelief, including by me) at the level of pain I am not in. I must confess that I was therefore desperately searching for some misery during the process so that I could throw you a bone and keep you interested. “A fleeting and very slight tugging” is the most I can give you without falling into my profession’s propensity for pretension. Think, if you can, of having your hair pulled into a ponytail (and not particularly roughly, I should add).
Sadly, I’m not allowed to keep the staples because of infection control. However, even that disappointment could not diminish my twin joys in the aftermath of their removal. I ate a meal in a chair for the first time since Friday night and remained upright for 45 minutes. This wasn’t a direct consequence of the staple removal, and it completely shattered me, but it just happened to come immediately afterwards.
After I recovered from my exertions, I then had the most eagerly-awaited shower of my life. My hair was washed twice in a row. It was unadulterated bliss. I suspect I looked as inappropriately happy to be showering as the Herbal Essences tarts did back in the day (Yes, Yes!). A couple of hours later, with the help of a leave-in shampoo, a tangle teezer and a very patient Mama, my hair felt amazing. Although it wouldn’t take much, it’s definitely the best I’ve looked and felt since Friday!
Photos of my war wound are available on the usual terms.
Unseizing the Moment
I’ve only had two seizures since 6pm on Wednesday so there’s been marked progress. The first one started at about 2am on Thursday morning, after I ambitiously decided to try to sleep on my side and immediately triggered an episode before I had even fully rolled over. The arrival of breakfast at 8am then proved too much excitement and set off a seizure, cruelly making my Steroid Baby wait for its nosh.
Throughout much of the day, I felt right-sided heaviness and tingling indicating that seizure activity might be imminent. However, the fact that they did not develop into seizures gives me confidence that the anti-seizure medication is starting to flex its muscles.
It’s over 16 hours since my last seizure, which is amazing given where I was even two days ago. Strangely, as the frequency of seizures has massively reduced, the duration and drama of the seizures has increased. While Tuesday’s average was a 20-30 second seizure every hour or so mostly affecting just my right leg, the two I had on Thursday lasted more like 90-120 seconds and affected the whole of my right side in a rather comical way.
I can’t describe the experience any better than to say that my involuntary actions bring to mind Dr Strangelove fighting against his Nazi arm (I recommend a look on YouTube for those unfamiliar with this reference). It’s ironic that, just over three weeks ago, I was worried that Leo’s self-taught Heil-esque salute might get me into trouble with social services given my long-standing interest (but not endorsement, for the avoidance of doubt) in the Nazis.
No News is No News
We have no results yet on either the brain trace or the biopsy.
I saw Mr H early on Thursday and we discussed the state of play. He was going to chase the EEG trace results as they were expecting a report by then but it had not yet been uploaded. He cautioned that the results did not necessarily solve the seizures as there are multiple factors to consider. Mr H will need to have a conflab with the neurologists about the best seizure-busting strategy.
The Man Who Touched My Brain said it’s atypical for us seized people to remain conscious. They occasionally have the more challenging cases like mine where it takes longer (and a more concerted effort) to get the seizures under control. Hands up anyone who is surprised mine aren’t standard? On the plus side, they’ve never had a case where they haven’t eventually controlled the seizures so I’m hoping not to make history in that regard.
On its own, a seizure strategy could involve surgery and/or medication. The dose of Keppra I’m on has been steadily increasing since Saturday and I’m already on the maximum dose of an additional Mackem-coloured anti-seizure medication whose name escapes me. Of course, any seizure plan will also need to be tied into the tumour-reducing strategy once the biopsy results are in. The tumour identification could be as early as tomorrow but we don’t know when the lab will be ready to call the results.
Just as Leo’s independence is increasing by the day, so is mine. I don’t have any foot/toe movement going on at all but, with the help of two fine physios, we worked the muscles earlier. My knee-bend movement has gone from zero-to-thirty (cm) in a couple of days. I’m not exactly ready for the Paralympics, but then I’ve got nearly four years to prepare so I’ll try and be patient.
Incidentally, neither of the physios successfully guessed what my writing paper is made out of. Any guesses?
All Quiet on the North-Eastern Front
A few people have reassured me that I don’t need to put on a “big and brave” front. I totally agree and I’m grateful that people feel able to tell me that. I appreciate that I might need reminding of this in due course, particularly as I get various results, a treatment plan (hopefully), and who knows what other things to go bump in the night. So far, however, I’m as sure as I can be that I’m not putting on any front and that this blog reflects the real Me, Myself and I(llegal).
When I decided to start the blog, I realised it was only going to help me (my number one objective, after all) if I didn’t try to filter my often-inappropriate comments. For one thing, I spend enough time proof-reading and editing the content, structure, syntax, grammar and headings as it is. If I were to consider whether something was appropriate for whatever audience I gather, I would never get around to publishing anything and the purpose would be defeated!
All the same, my secondary concern was not to add to the undoubted concerns of my nearest and dearest by burdening them with my erratic thoughts. I was particularly concerned that my beloved Mam, who naturally didn’t find our family’s first brain tumour journey a barrel of laughs, might find my “tumour humour” a bit much.
I was reassured on that front when my Mam received a phone call from our former vicar in Stockton (who retired maybe 20 years ago) a few days after we found out about the Squatter. The vicar had heard at a church prayer group via the mum of a dear friend. When my Mam came off the phone, she said: “That was lovely but I hadn’t even thought to ring the old vicar from all those years ago; I mean, that would be milking it a bit wouldn’t it?”! For some reason, that clinched it for me that a blog could work.
There are a couple of exceptions to my general free-for-all approach:
- I won’t upload super-gory photos on to the blog on the basis that you can skim over a description (should you wish) but you probably can’t un-see something that has made you pass out. I’ll happily share privately, of course.
- More difficult for me, given the amazing material I’ve collected in just three weeks, I’ve taken a self-imposed vow not to use the blog to denigrate, insult or otherwise embarrass others, whether friends, family, fellow patients or anyone else (at least without their permission). I had a moment of weakness early on regarding a certain friend’s film choices, but hopefully she has forgiven me, and at least I didn’t say anything I don’t say regularly to her Face(Time)!
Back to the point, though, there are two things that convince me that I’m not putting on a front.
1) Drama Boy Number 2
When we brought Leo to the RVI last December at eight days old, he was so poorly, I was convinced we wouldn’t be bringing him home again. I was completely past myself, terrified I was losing my boy, and couldn’t stop crying or letting my thoughts run away with the horror of it all. As those around us will attest, I was incapable of being big, brave or putting on any front whatsoever.
This inability to fake it never ended. I was a basket case throughout the tense four-month post-meningitis period, which covered bronchiolitis, a suspected viral rash, silent reflux that took months to overcome, poor weight gain and colds for 14 out of 18 weeks. My finest moment came when I quite literally threw a packet of wipes at Graham’s head (while he was holding Leo, no less) and told him to “f#%* off” when he was trying unsuccessfully to calm me down one night during an irrelevant argument with my Dad (about a dessert, if I remember correctly).
2) The Original Drama Boy
Graeme told my Mam in the middle of his ordeal that he was glad that it was him who had the brain tumour and not me as he would not be able to cope if he were watching his little sister suffer. In the decade after my Mam relayed that to me, it remained the one emotion relating to Graeme’s tumour and death that I was unable to process in any meaningful way.
In fact, I’ve been unable to think of that beautiful, selfless sentiment without tears until three weeks ago as it made me feel unworthy, guilty and overwhelmed (to name but a few identifiable emotions).
My generous, witty, adventurous, gregarious, fiercely loyal, loving brother seemed to be stating that it was more important for me to live than for him to survive. Feeling unworthy of that sentiment is actually a massive understatement; how could anyone (other than a Trumpian narcissist) feel worthy of such a sentiment?
I have long feared that perhaps I didn’t love my brother as much as he loved me because I was never certain that I would have had the equivalent reaction had the roles been reversed. The guilt about this has, at times, paralysed and overwhelmed me. The only positive coming from this unprocessed jumble has been a determination to become as worthy as possible of Graeme’s high opinion of me.
Things suddenly fell into place in this messy part of my mind three weeks ago, immediately upon being told that I have a brain tumour. One can’t fake one’s immediate internal reaction to such an unexpected diagnosis. My undoubted fears for the length and quality of the rest of my own life absolutely pale into insignificance compared to the overriding relief I feel that it’s not one of my kids, my husband nor one of my parents that has a brain tumour.
I finally realise that I don’t need to feel “worthy” of Graeme’s sentiment. I just need to accept that it was his instinct and came from our rare and amazing sibling bond.