Misremember, Misremember, the Most of September

In theory, I currently have more spare time than I’ve had since 2004, when the rude introduction into working life ended the Time-Turning decadence (and monotony) of law school. Yet, I’ve still not had time over the past couple of days to read any books, watch any television or publish a substantive blog post as planned. Time just flies in here, you’ve got no idea!

Time Off for Good Behaviour

Mr H popped to see me on Wednesday morning, and again this morning, to confirm that he’s still awaiting lab news (excellent client care in updating me even when there’s no update, he’s an example to us all). Mr H is expecting to have results from the lab in time to come and discuss them with me tomorrow afternoon.

From a seizure perspective (as of this morning, it’s been four weeks since the initial blast-off that led to the Squatter’s discovery and one week since my last episode), Mr H is happy with my progress. He is therefore ready to discharge me from hospital as soon as my physio, the occupational therapist and I are satisfied that I’ve got enough mobility to continue to flourish outside Ward 16. Plans are afoot for me to be released back into the wild tomorrow so it looks like tomorrow is shaping up to be  another date-converging day.

I am now an authorised “Splint ‘n Go” walker without medical supervision, as long as I have a friend, family member or person from the Clapham Omnibus on hand to keep me on the straight and narrow. I also successfully walked up and down a small flight of stairs this morning with no assistance except from a friendly banister.

Nazi News

My right wing is flexing more muscles by the day, including some fleeting but confirmed sightings of the Lesser-Spotted Upwards Shuffle. Work with the physio yesterday and today has further identified the nature and extent of the movement recovered so far and where it’s coming from. In summary, the further away from my brain you get down my right side, the weaker I am. Apparently this is quite literally because it is further for the brain’s “move on out” signals to travel, so it takes longer to build new communication infrastructure after existing lines have been destroyed by 120 seizures.

  1. My arm has recovered full movement and has lost the un-coordinated heaviness of last week. It is very close to being back to full strength and I don’t notice any weakness in my exciting daily life (funnily enough, I’m not weight-lifting, which would definitely betray my arm’s slight frailty).
  2. I have regained full “Up and Down” movement in my knee and upper leg. Incomplete lateral movement means my leg regularly does a good involuntary interpretation of “jelly on a plate” but the gelatin is setting more and more by the day.
  3. The upside is that my ankle has regained a lot of downside power. The downside is that my ankle has regained only minimal upside power. This increased ankle power is driving most of my foot’s manoeuvrings at present, which increases on a daily basis up- and down-wise, but it still hasn’t branched out laterally.
  4. The most hotly-contested debate of the week occurred on Wednesday night. Visitors committed to Toewatch swore that some toe movement we all witnessed could not have been the result of ankle power because of the pivot points involved. As I didn’t know how I was moving my toes, I couldn’t repeat the trick on demand and we couldn’t reach a consensus. Fear not, it was a very good-natured debate, no one fell out (and, actually, as of this morning, I’m happily inclined to think they were right):

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The Cheek

That family photo is a good example of how the Steroid Baby’s demands have helped me develop chubby Coley cheeks worthy of the family I married into. I already felt pretty much accepted but maybe this will seal the deal. Although I thank you all for not mentioning it, I have definitely reached my heaviest-ever weight (non-pregnancy division). I fear (in a “last of my problems” kind of way) that I might soon be rivalling my heavyweight record (pregnancy division) as well.

The pace of weight gain is at least slowing down. On Wednesday, I only needed two meals on top of the three three-course meals provided by the RVI. It’s still One For My (Steroid) Baby and one  more for the road, but, up until a couple of days ago, the Steroid Baby was thrashing the RVI something like 6-3 every day. Last night, I had no food between my 10pm supper and 7am breakfast for the first time in forever so the Steroid Baby is not having everything its own way (unlike Leo…).

I’m not exaggerating on the 3×3-course meals a day, by the way. Breakfast has been a bowl of Bran Flakes, two Weetabix and two slices of toast since I’ve been on this Ward, while each of lunch and dinner consists of starters and puds as well as the most substantial meal choice I can see on the menu.

O Canada! 🇨🇦

Proof that every silver lining has a dark cloud, however, is that my 2am feast had become a regular Messenger catch-up session with my Canada-based film buddy. I will miss the chats, laughs and photo-sharing if my middle-of-the night munchies don’t return. I’m grateful she’s been standing on guard for me as the Canadian anthem promises.

Wipe Out

I rested for most of the day yesterday and feel all the better for it today. Despite what Roxette once claimed, you can’t always listen to your ticker. In my case, that would have led me down the garden path of exciting adventures yesterday for the third day in a row.

Rather sensibly, and definitely surprisingly, I followed my body’s lead even though it seemed a bit confused. It would have had me believe that the weary fatigue I felt from the moment I woke up yesterday was the result of running a marathon. Relatively speaking, to be fair, it probably wasn’t too far off as I pushed myself a bit too far on Tuesday to achieve two personal Gold Medal Moments.

🏅A Close Shave

The good lady Rent stopped by on Tuesday morning to put in a voluntary shift and help me with my shower. I don’t need assistance for run-of-the-mill personal care but this was an ambitious escalation in showery proceedings. I am pleased to report success in achieving my first bold ambition of Tuesday, which was to shave my legs.

I was beyond grateful for Mam’s work as I definitely could not have achieved blissful silky smoothness without her (another Herbal Essences-esque moment). In a mutually beneficial arrangement, though, I think Mam might admit that she was grateful for something to do on an empty Tuesday morning. After all, now that Leo is at nursery for part of the week, and while I’m on holiday in the Big City, she must be twiddling her thumbs. My demands therefore saved her from at least a few hours’ boredom. She doesn’t need to mention it, though, it’s just the kind of devoted daughter I strive to be.

🏅The Hollies and the Lively

Tuesday had also brought another date afternoon with the silver bearded fox. This time, we mixed things up and went to Costa.  We then proved that the chorus of The Air That I Breathe is absolutely true: Graham helped me earn my second medal of the day by wheeling me outside. For the first time since I was blue-lighted into hospital in the early hours of 17 September, I greedily filled my lungs with fresh air. I enjoyed the simple but incalculable pleasures of feeling unhindered natural light on my face and a chilly breeze at my back.

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For those keeping count, yes, that was two date afternoons in a row. We also spent about about five hours together at my bedside yesterday and Graham even pointed out that I didn’t pick up my iPad until four hours in. We have to be careful not to get too carried away, as we are in danger of running out of things to say to each other. I can’t even resort to my usual default conversation (holiday planning) ready for such occasions given the uncertainties we are facing. Thankfully, yesterday we had a special and very entertaining guest for part of the afternoon to help keep the conversation and hilarity going.

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Children’s Hospital

Yesterday, I enjoyed precious family time with Jennifer and Leo and grandparents in the day room for the third day in a row! We’ve had a return to the pony games, with Grass and Glitter Queen returning to action. Jennifer knows that Beautiful Blonde is suffering injuries to both her leg and her head that prevents full participation but this hasn’t stopped her helping to hold the golden finishing line.

Leo is taking up to five independent steps at a time and increasingly looking for opportunities to Walk the Line. I heard on the grapevine that he had an amazing first week at nursery. I am thrilled with everything I’ve heard about his experiences except one shocking development.

Anyone who has witnessed a Leo nappy change at any time during the last couple of months would agree that it’s a bit of a battle to say the least. He twists, arches, wriggles, complains and usually crawls away at least twice mid-change. The most successful technique has proved to be a two-person job involving both distraction and pinning down. My favoured method when going solo has been to change his nappy while he’s standing up as it’s been counter-intuitively easier that way. However, we are all shocked to our bones the nursery has already noted how easy-going Leo is during nappy changes with the conclusion that he’s “no bother”. What an audacious and traitorous little charmer.

50 First Mates

In a devastating blow to the pride of someone with aspirations to be recognised as having a photographic memory, I’ve realised that a lot of September is a bit of a blur. I knew that I had very big gaps in my memory from the weekend I spent in ITU/HDU and I could live with that on the basis of the number of seizures I experienced, the powerful anti-seizure injections I was given and my ultimate sedation.

I had believed that I could remember the sequence and details of pretty much everything else that September has brought us so far. The last couple of days, however, has brought to light my Swiss Cheese recollections. I have not just forgotten certain details of a few visits, I have (in several cases) completely forgotten that people had visited at all! Apparently, each seizure can be akin to a 20-minute workout in the gym, so it’s no wonder I’ve been so tired for the last 12 days!

A specific reminder has usually triggered a partial memory but I’ve had to work to recover the details from my weary brain. In a bid to relive my glory days, my self-appointed fact-finding mission, which I’ve chosen to accept, is to piece together my month. If I uncover enough material, I might release further Blankety Blanks instalments. Will I release more sequels than Police Academy? Now there’s a challenge.

No wonder I’m so busy when you factor this in to: family time; dates with my toy boy; physiotherapy exercises; writing letters to the kids; extensive time feeding the Steroid Baby; blogging; socialising (both in person and via technologically-advanced media); keeping up with podcasts; and, debate-watching (but only after I knew it was safe to go in the water).

A Bit on the Side

Last night brought me a short but sweet return to sleeping on my side for the first time since before my biopsy. Variety is the spice of life after all.

O Brother, There Art Thou

I am not sure what triggered the thought, but yesterday I realised that I had become eligible for my testimonial at some point over the last month. When I looked up my registration, I realised that my biopsy, as well as being on the anniversary of Uncle Jim’s sudden death, occurred on the 10th anniversary of my qualification as a solicitor.

That brings to mind one of the most moving moments, from my perspective, from the last couple of months of Graeme’s life. Graeme spent a week or so in Hartlepool Hospice to overhaul his medication to manage his pain. At the time, the cancer was causing not just a lack of mobility for our boy but also some significant mental confusion at times. He was sleeping for large parts of the day and taking some pretty strong painkillers, which can’t have helped his confusion. Graeme therefore wasn’t always aware of what was going on, whether it was day or night, where he was and/or who was there with him, although he still regularly issued his legendary one-liners and never lost his spirit.

The hospice stay coincided with my qualification. By then, as it was clear that Graeme didn’t have much time left, I had, at the amazing suggestion of at least one of my bosses, taken the decision to work from the family home in Stockton. I had wanted to help my parents care for my brother as well as spend as much time as possible with him while I still could. I spent the hospice days by his side in a chair, often with my work laptop, but admittedly spending less and less time fee-earning as the days went by.

One day, when I arrived at the hospice, I introduced myself as Graeme’s sister to a nurse I didn’t recognise. She said something like “ah, you’ve just qualified as a solicitor haven’t you? Graeme’s just been telling me how hard you work in London and how proud he is of you”. That emotional memory still knocks my socks off because, as self-centred as it is to admit, it felt like a gift that his brotherly love and support overrode that blasted tumour at a professionally important moment for me.

Dairy Regulations 2016

In a serious joking way (if that makes sense), I have encouraged friends and family to use tumour humour to release any tension and worry they might be feeling. It’s always helped me.

One amazing friend visited me in the QE on 1 September. To recap, that was my first night in hospital and came after a CAT scan indicated that something serious was going on. The doctors had warned that the “something” was almost certainly going to be a confirmed brain tumour, albeit the MRI that confirmed this diagnosis did not come until the following day.

When I was transferred to a noisy ward, I whispered something along the lines of “they better pipe down, don’t they know I’ve got a brain tumour?”. Head in hands, my dear, devastated and worried friend replied: “too soon for the black humour, R, too soon”. Being the kind, caring friend I am, I struck a deal not to crack further tumour humour gags with her until she confirmed she was ready. To be fair, she turned around the request quickly and due confirmation came within just a couple of days.

Since then, I have been encouraging her (and others) not just to use humour as an outlet but also to, as inappropriate as it sounds, basically “milk” the situation as much as possible. If you can’t use the phrase “my friend has a brain tumour” from time to time to ease some pressure on you or score a favour, what’s the world coming to?

I discovered last night that, in a poor showing given my profession, I hadn’t given any thought to the guidance that might be required on how to milk brain tumours. I feel responsible for the horror I inadvertently unleashed on my friend’s hairdresser, who was querying the reason for the length of my friend’s roots. I’ve given thought today on how to rectify my mistake (incidentally, can I blame my error on my brain tumour to escape penalties?). I’m therefore finishing this long blog post with my primary tip for milking a brain tumour.

Regulation 1:

1.1 The person from whom you seek a pardon, favour, freebie or other benefit by combining the following flexible milking phrases:

1.1.1 ‘give me a break/get me some pizza*’; and

1.1.2 ‘my friend/long-lost cat* has a brain tumour, don’t you know’,

should ALREADY KNOW that said friend/long-lost cat* has said brain tumour. 

1.2 *Delete and/or amend as appropriate.

Commentary to Regulation 1:

This principle is absolutely vital if you want to remain (just) on the appropriate and humourous side of the milking line, rather than coming across as horrifyingly insensitive and/or unhinged by breaking news of your friend’s/cat’s brain tumour and immediately dissolving into a fit of giggles.

Hope that helps.

rx

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