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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A clear head

It’s been a stressful couple of weeks.. first the fridge/ freezer gave up the ghost within a whiff of the builders arriving to start the kitchen renovation and then the full on days and nights of knitting up my denim design. Life really is back to normal. It’s now nine and a half months since my craniotomy and I’m still incredibly grateful that life is so normal and that this is all I have to worry about. Those little ‘problems’ are easily resolved; we have a new fridge/freezer (it’s amazing how keeping the milk in a cool box for a week makes you appreciate modern appliances) and the beautifully finished garment has been carefully wrapped and dispatched.

Last Monday I dipped my toe back into serious waters with a visit to see my neurosurgeon for my second post op check up. It’s more than a little bizarre that I’ve met him only four times and yet he knows my brain more intimately  than I do. The fantastic news is that the MRI scan that I had before Christmas shows no sign of tumours (or lesions as he refers to them) and although he can’t give me any answers as to why I still suffer from migraines and occasional dizziness he’s happy with the scan results and won’t need to see me until next year. I may have an awful memory and occasional migraines but I’m truly grateful that he’s given me the ‘all clear’ and whilst I’ve been sweating the seemingly small stuff I have to remember that this is what really, really matters.

(The pre op MRI is on the left -the white mass in the top right is the larger tumour and the post op MRI is on the right showing all clear).

Thank you to everyone who has supported me over the last 9 months. Have a fantastic day

J x