Busdaster!!

 You couldn’t write it. But I’ll try. 

A few weeks ago I had another wee turn at work. Exactly the same as last year…..pins and needles and numbness in left hand, travelled up arm, and then slurred speech. A boss rang me just as speech went so it was all high drama! Two colleagues were immediately sent to my office to take me to A&E. Of course, my symptoms mimic a stroke so I was straight in for checks. Despite my protestations, I was kept in for two nights and left black and blue from cannulas. Though I shouldn’t complain because all those tests and observations confirmed no bleeds or strokes and no change in my brain tumour. 

All grand…….except……. My neurologist diagnosed a partial seizure, increased my medication and instructed me to hand in my driving licence. I’ve been here before…..one year seizure free and I can reapply. 

It could be worse. I live close to my base office and most of my meetings are now online. Any that involve travel can generally be reached by public transport but my bosses are very supportive and would never make me go to anything if I didn’t feel able.

Getting to and from my office should be fairly simple. Hubby is on a different rota for the summer months, but I was able to sort out earlier start and finish times so he can drop me off in the mornings and then there’s a wee bus I can get home.

Simple. You’d think. I am 50 years old. I spent my childhood either walking everywhere or getting buses. Unfortunately it seems the bus gods are having a laugh at my expense…… 

I have attempted to get the bus home four times now…..

Day 1: Standing at the bus stop. Bus drives past and doesn’t stop. Back into office to accept a lift I had earlier declined because “I need to get the bus!!” Ended up the bus that had driven past me wasn’t actually my bus. Doh.

Day 2: Successfully got home on the bus. Yay, go me!!

Day 3: Waited in rain for bus. Successfully get bus home, only to discover my keys are still in my office. Double doh! Walked back round to nearby cafe and drank tea while awaiting hubby’s return from work. 

Day 4: On the advice of a dear friend, I made up funny song about forgetting keys. It goes like this (tune of ‘Head, shoulder, knees & toes’) -

Coat, handbag, phone and keys, phone and keys

Coat, handbag, phone and keys, phone and keys

And nooowww you arrreee ready to go home

Coat, handbag, phone and keys, phone and keys!!”

Recorded myself singing song for the laugh and sent it to hubby, sister and a couple of friends, including a neighbour I call our BNE (Best Neighbours Ever). BNE offered to collect me. I declined. Waited for bus. No bus. Rang bus station. Bus driver running late. Continued to wait for bus. Wind howling round me. Ears getting sore. Nose running. Hands freezing. Bus now half an hour late.  Starting to worry bus would be cancelled. Next bus due in another half hour’s time. Rang bus station again. No answer. Rang bus station again……and again…….and again……..No answer. Rang BNE. Collected by BNE. Arrived home with ringing ears, a snotty nose and greeted by a hungry dog! 

Hoping for more success tomorrow. Thankfully bus life is temporary until hubby returns to his previous rota in a few months time.

Seriously though, it shouldn’t be this hard!! I’m only trying to get a bus a few miles up the road, I’m not trying to cross the Mississippi on a raft!!

And now for the positive finish…….I'm home, I’m safe,  I have a great life full of fun and amazingly supportive family and friends, not to mention I’m still alive! I’ll be alright if nothing falls on me………which reminds of another positive story to end on…….

Following the death of my darling beloved dad, I made a very bold  purchase of a baby grand piano. It’s second hand but looks like new. I played piano as a youngling and was getting ready for my Grade 6 exam before boys, rock music and drink made classical piano lessons very uncool. Dad had been gutted when I gave up, and was delighted when I started playing again a few years post diagnosis, in a bid to improve my memory. (It worked, my memory though not great is nowhere near as bad as it was, and to my surprise I can still read music). I began playing again on a keyboard, but being able to upgrade to a proper, upright (as was the original plan) piano was wonderful. How I ended up with a baby grand is simply due to a clever salesman and my knowledge that my daddy would’ve love it….he often had a taste for the finer things in life, and I know he’d have gotten a real kick out of hearing me play ‘Francis’ (Houseman……because nobody puts Baby in a corner…)!

Anyway, back round to the story. Stop yawning, I’m getting there!! We have a dog. She’s old and is becoming somewhat odd in her ways. Recently she started playing ‘floor is lava’ in all the rooms that don’t have carpets……the kitchen, back living room, and front room. So we bought a runner for the kitchen and two big mats for the back and front rooms. They actually look great so our old girl did us a good turn. Anyway, the mat for the Music Room (Francis needed to be housed appropriately and hubby has a record collection that needed to be showcased!) The Music Room mat needed to be slid under Francis, just a wee bit. Hubby told me he’d need me to slide it under while he lifted the piano slightly. I joked not to drop Francis on my head but then decided that if you’re going to go then having a piano dropped on your head seemed very rock n roll. Not quite death by stereo, but not far off it in terms of old skool kool!

The piano didn’t fall on me. The mat looks great. I got home. I’ll successfully get the bus tomorrow. I’ve got Friday and Monday off work. All is good. Living with.

As you were! Xxx

Just everything

I have five voicemails saved on my phone. They are all from my dad. Never a big one for the phone, the shortest is 3 seconds long, and the longest is 12. Each one starts the same, “Hi, it’s just me…” 

My dad was never a ‘just’, he was an ‘everything’. In my young years he was my whole world. My hero. My big strong dad. Bright, handsome and funny. Very much like my son. 

As I became an adult, I became aware of things dad had perhaps got a bit wrong and I was critical of him. In many ways I felt let down. 

Over time though, I began to better understand why he did things the way he did. Nobody gets everything right all of the time, but I know everything my daddy did was because he believed it was best for my sister and I. Our happiness was the most important thing in the world to him. He would have done anything for us.

I miss him. I miss our weekly lunch dates. I miss his 4 second phone calls. I miss his dry sense of humour. I miss his quirks. 

I miss his sometimes slightly odd style of dressing………this is the man who kept a safari suit in his wardrobe well into the 1980s. It was probably bad enough that he ever had one, never mind that he refused to get rid of it even though it would never have fitted him and if it had, he’d have looked like a Roger Moore James Bond throwback! 

Daddy could be very dapper, always clean shaven and opting for smart suits, shiny shoes, and a splash of Fahrenheit aftershave. In later years, after he’d lost two wives prematurely (my mum at 36 years old and my stepmum at 48), he became something of a scruffbert when not in company. His visits to the Rugby Club always required smart trousers and usually a shirt and tie, but on quiet days he became quite the fan of leisurewear. The only slight issue with this was that my handsome daddy didn’t really know how to ‘do’ leisurewear. I remember popping into town one day to do a quick message in my lunch break and seeing dad. He was wearing cheap grey jogging bottoms with sandals and socks, gah! To top it off he had matched this fashion faux pas with a wax jacket and a blue and white striped woollen bobble hat, sitting high on his head! He somewhat resembled a homeless man. I wasn’t embarrassed, rather I was amused and happy to see him let go of his tendency of appearing slightly stuffy. He was going casual, not worrying about what people said, throwing off the shackles of middle class expectations. Wonderful.

Dad was always trying to live up to expectations. I don’t think he ever felt good enough. In reality he was way better than he ever realised. He was kind. He was intelligent. He was handsome. He was witty and also funny in a sometimes slightly nerdy way. He loved a silly joke and could be something of a wind up merchant.

My dad was pure class. I miss chatting to him. I miss his road trip expertise…….if you told him you were going down south for a wee trip, he’d insist on talking you through a full itinerary of ‘must sees’, weeks before your departure date. I miss summer Saturday adventures with my son, on weekends when my darling husband was working long shifts in a tough physical job to keep our bills paid. Trips to Rathlin Island, Belfast Zoo, Exploris Aquarium and seal sanctuary, and the Ulster American Folk Park to name just a few. I miss his daft jokes, dry wit and sarcasm. 

I look back at precious memories captured in photos and videos on my phone…..the time he made me cut his hair during the Covid lockdown. The time I caught him buying new underpants because otherwise he’d ’have to wash the others!!’. The time I drove him home from hospital in his old convertible Saab and put the roof down to let him breathe in the fresh air, and how we roared with laughter at the sight in the rear view mirror of a pair of his pyjamas bottoms sailing up into the air from the bag in the back seat! There are so many memories, each one precious.  

I miss you daddy but you’ll always be in our lives. 

Anniversaries

January is almost at a close so it’s anniversary season…… tomorrow is my eight year seizureversary. Imagine! Not that it really makes much difference…..eight years since cancer jumped out on us, but with hindsight we know it was lurking around for very many years before that. The grand mal was just it revealing its attention seeking nature…….heaven forbid we would continue to ignore it!! 

I recently discovered that the French term ‘grand mal’ literally translates as ‘great evil’. Very apt. Eight years ago a great evil visited us to draw our attention to the demon I’d been ignoring and dismissing. Those migraines? Not migraines. Those episodes of feeling a bit out of touch with reality? Not just tiredness or sinus problems. The reality is though that I was just unfortunate. The type is tumour I have is unusual and it could have been worse….. one grade higher and I probably wouldn’t still be here.

And so we return to the place where I remember how fortunate I am and count my lucky stars. I’m not the girl I was BC*, but I’m living a fantastic life. In many ways a much better life than I lived before. Cancer brings a clarity of thought that helps you realise what and who is important and helps you prioritise better. 

I am currently sitting on my sofa, reflecting on where the journey has taken us. I’m listening to the sounds of hubby adding a few things to the campervan we bought in September……. a roll up/down thermal screen for the back window to stop any drafts from chilling my bum on winter nights away, and some hooks for the fun signs we’ve been given by those celebrating with us…...

Our van, Paddy, is simply wonderful. This morning I enjoyed a lovely, if cold and quick, sea dip before scooting back up to a lovely warm van (hubby had made sure the heating was running to make the van cosy for my return). Once inside, I got properly dried and dressed in warm and comfy clothes and was nice and heated up in time for hubby returning with two cups of tea and two gingery bottomed caramel squares from a beachside cafe. Then he drove me round to a spot with a view out across the sea, and we drank our tea and ate our buns. Bliss. 

Yesterday we enjoyed some quality time with our son and his girlfriend. Another reminder of how fortunate we are. 

Family remains an important support. 

Eight years on from the great evil I am changed but I am happy. On Friday I go for my regular, six-monthly MRI. On our 28th wedding anniversary! I’d be lying if I said I wasn’t experiencing a wee bit of scanxiety. The winter scan is always the worst as my narrow, hiding veins run for cover and seem to sink ever deeper into my skin, leaving nurses with the unenviable task of having to go digging deep to try and find a vein able and willing to hold a cannula for the contrast dye. It’s painful and the whole experience is exhausting. Thankfully the nurses are generally fantastic and I know my wonderful hubby is sitting, waiting outside, probably planning a wee surprise stop off for food and/or cuppas on the way home. Most importantly these scans inevitably confirm everything remains ‘very stable and very quiet’……long may that continue. 

Life is good. Here’s to more calmness and stability, beside beaches and in forests in our Paddy wagon. Together.

* BC - before cancer, AD- after diagnosis.