A very happy craniversary

A year ago today I was an inpatient at The Royal Sussex County Hospital here in Brighton. Fully anaethestised I spent around seven hours under the knife of Neurosurgeon Mr John Norris as he, along with a team of amazingly and highly trained clinicians and nurses, sliced my scalp from ear to ear, bored into my skull and deftly removed the two brain tumours that had been causing me so many problems. Having felt so bad for so many months prior to the operation I began to feel better pretty much as soon as I came round. In fact I was feeling a bit too good as, according to the nurses in the recovery room, I tried to get off the table – ever the control freak, I obviously wanted to be in charge.

So today is my craniversary, the anniversary of my craniotomy and I thought I’d share my progress with 12 pictures from the last year.

To say that it’s been a whirlwind 12 months would be something of an understatement. Not long after my diagnosis  I was fortunate enough to find the Meningioma UK group on Facebook. It’s been, and continues to be, a great source of support (and believe it or not humour) not only for fellow meningioma patients but also the families of people diagnosed with this type of brain tumour. Having been advised at first that the tumours were likely to have been a return of previous breast cancer which would most likely have meant a terminal diagnosis I will ever be thankful to the phenomenal NHS who have saved my life yet again and a week after my surgery gave me the best news I could have hoped for. That neither of the tumours was malignant and I could plan for the future. I’m well aware that not everyone gets such amazing news and I’m keen to remember those overwhelming feelings of joy whenever I begin to whinge about tiny everyday niggles that really, really don’t matter. And this has become even more poignant in the light of what’s happened in Manchester in the last couple of days.

Unlike a lot of meningioma patients I didn’t give either of my tumours a name, I  preferred instead to refer to them as squatters. As ever  I haven’t taken the easy route to recovery since my brain squatters were removed. I could probably (well definitely) have spent more time ‘resting’ but let’s face it, that just wouldn’t have been me. I’m very blessed that over the last 12 months I’ve been able to move house, start to ride a bike again, complete 4 design commissions that will be published later this year, re-discover my love of ‘making’ which has led to the birth of SLOANmade and (along with Sam of course) am currently overseeing the renovation of our ‘kitchen from hell’ as well as organising my parents’ house sale and re-location to Hove. There are still the odd days when I’m exhausted for seemingly no reason and infuriatingly many more days when I mix up my words, lose concentration mid- task, fail to respond to Sam because I can’t concentrate on two things at once (sorry!) or forget….well just about everything that happened the day before. But hey, that’s all down to the new brain (and yes it is still new even 12 months on) and all of that is so, so much better than it could have been.

Thank you to everyone who has sent their support to myself and Sam whether texted, phoned, Facebooked, or tweeted. Thank you for the magazines, flowers, boxes of crips, boxes of popcorn, bars of chocolate, portions of delicious home cooked food, parcels of creams and intoxicating smellies, kitchen gadgets (you know who you are), glittery head garlands (you know who you are too) and many home visits. Please know that every single one has had a magical healing effect.

J x

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From would be butcher to knitter

31 Day Challenge Day 26

fullsizeoutput_354There was a time, way back in my childhood, when I thought I wanted to be a butcher – yes I think I know what you’re thinking. But back in those days there was no such thing  as vegetarianism in our Bajan household and my parents found that if they wanted to feed a family of six the cheapest way to buy meat was to get it  wholesale from London’s Smithfield meat market. I think I was about 11 years old when was I first woken at 5 am and dragged along to help Mum carry bags but I became fascinated with the sights, sounds and (disgusting) smells that surrounded me. Obviously I didn’t become a butcher but I’m telling you this because it’s meant I’m not squeamish and don’t scare easily when it comes to blood and gore.

I’ve been through a lot of over the years and really believe that visualising any illness helps me to focus on the recovery. Back in Edinburgh I asked a registrar  if I could see my breast tumour after my first mastectomy. He quite didn’t understand and offered to show me the actual removed breast. I replied “if I want to see my tits I can look down now”. Needless to say he exited the ward quickly.

Anyway I would have really loved to have observed my brain operation (a bilateral craniotomy) as the process truly fascinates me.  Last night as part of their Hospital series BBC2 aired Episode 3 which focuses on the work of the neurosurgery team at (I think) London’s Charing Cross Hospital. You can watch it on the iplayer here.(Obviously expect some blood and gore).  Although it doesn’t show exactly the same procedure as mine it does show how brutal yet sensitive brain surgery is and how, despite the immense pressures of an underfunded, over subscribed system the unique and brilliant NHS and it’s incredible staff continue to save and improve lives for all of us.

And I am very grateful that it does

J x

 

 

Knitting mojo

31 Day Challenge Day 25

I’m really enjoying this blog challenge but have to admit that some days are a more of a challenge than others when it comes to writing a post. It’s been a bit of a strange week for me, one moment I’m mentally focussed and the next my brain ‘flatlines’ when it feels overloaded (I’ve been working with a tech editor on some designs completed before my operation – now there’s a strange headspace to try and get back to). The one thing that is giving me more enjoyment than ever is the actual process of knitting. The click of the needles, the snaking of the yarn through my fingers and the wonderfully repetitive process of in, over, round and out as stitch after stitch is created. There have been a few periods over the last couple of years when I really thought I’d lost my passion for a craft I’ve loved for so many years and as a designer I felt unfulfilled, unsuccessful and uninspired. It’s probably quite common for people whose living depends on their creativity but it’s also very unsettling not knowing when (and if) your mojo will make it’s return.

Well in my new mindful habit of living in the moment I am embracing my newly returned mojo and following wherever it leads me. Let’s hope it sticks around for a while

J x

…and it was going so well

31 Day challenge Day 6

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This doodle was done just after my craniotomy and tries to describe the sharp stabby pains and the aura experienced during one of my attacks.

Why the title? Well, I was really enjoying my first working week of the year and settling into my daily blogging as part of the #31daychallenge when a familiar ghost reared it’s ugly head. Migraine.

So given that there’s been a lot of ‘screen time’ this week which has no doubt contributed to me having the first attack in months I hope you’ll excuse this short post.

Hoping to catch on with another short post later

 

J x

 

 

In the words of Nina Simone

31 Day Challenge Day 5

Having struggled over the last couple of days to write a blog post in less than an hour, today I’m feeling…well dare I say, pretty chipper and mentally alert. Apart from being very chilly down here on the south coast the sun is shining and the sky is a stunning clear blue and that always put me in a great mood first thing in the morning. I always have music playing in my wee office, it helps me to think, inspires me and generally keeps me company whether it’s the brilliant Ken Bruce on Radio 2 or something from my own record collection (oh now that shows my age).

Today Nina Simone’s ‘I’m Feeling Good’ sums up perfectly how I’m feeling. Do you have a favourite track or playlist that you like to work to and what makes it so special?

Whatever you’re listening to, have a wonderful day.

See you tomorrow

J x