This time last week I was one thousand miles away basking in the heat of the Corsican sun enjoying a much longed for holiday. Today however although I’m back home and on much more familiar turf, mentally I’m in a very strange place. I suppose it’s only natural to feel a little deflated when you come back off holiday but I’m really struggling to lift my mood, it could be the lack of sunshine…or heat….or that illuminated salt water swimming pool I’d got just a little to used to.
Alternatively it could simply be due to the fact that even 2 years after my op my post craniotomy brain dictates more than ever whether or not I can focus enough to work. This week it’s been ‘or not’. With a brief break for Tuesday night’s Stitch & Bitch I’ve been in a ‘pre migraine’ state since Monday morning which has made me touchy, anxious, achy and low. I’ve had to accept that the project I’d planned to knit on holiday just didn’t get done …..and you know what, that doesn’t matter. Instead I’m going to let myself off the spinning classes I didn’t do this week and allow my brain to do what it needs to come back to ‘normal’.
Whatever that is.
I’m hoping the re-set will happen by Monday as I’ve got quite a lot of knitting and writing to do. In the meantime I’ll chug along with the sock I’m knitting and catch up on some good drama on the iPlayer. Just as well it’s Slow Fashion October.
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.
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.
Pre op MRI showing the larger brain squatter (white mass in tpp right)
Post op MRI showing all clear
(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
Back at the beginning of the month I threw myself into this blog challenge having been inspired by accounts I follow over on Instagram. My main motive was to help me focus mentally as part of my recovery and although I’ve struggled on some days to write a post ( in person I never seem to stop talking even if it is gibberish) I’ve discovered that I’ve really enjoyed sharing a little bit of me with you. It’s been great to connect with old friends from the Edinburgh days when I ran a yarn shop as well as making new friends and finding new blogs to follow. We all know how dark and turbulent the world is at the moment and I figured that with so many voices shouting in anger I prefer to keep my home here more of a positive space. My headspace is very different now compared to 12 months ago and it doesn’t mean that I’m unaware or uncaring it’s just that reducing stress is much healthier for me.
So what are my plans now that the 31 day challenge is over? Well thanks to some very lovely comments telling me how much they’ve enjoyed my ramblings I plan to keep writing regularly (the plan is twice a week) to let you know what I am or have been up to. Who knows I may even be able to do it within 15 mins but like a kitten with a torchlight I’m still easily distracted so who knows.
Before I sign off for today I hope you’ll pop over and have a look at the blogs and or Instagram feeds of the people who have helped to make this challenge such a pleasure to undertake.
There 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.
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
Yes, I know I’m cheating. It’s Day 22 of the #31dayblogchallenge and I’m merging both yesterday and today’s posts but I’m sure you’ll forgive me. Sometimes the lure of the virtual, digital world of social media, great as it may be, can’t beat the actual, tangible world where there is real, physical interaction with other people. People who fill you with joy just to be in their presence.
This weekend I’ve been catching up with a couple of close friends who I’ve known since the late 80’s when we were all textile design students at Amersham College. Throughout our time at college we formed a tight bond of four mates one of us – Natascha- studied printed textiles design (or as we put it, turned to the ‘dark side’) whilst myself, Angela and Wendy followed the true path and became knitters. I absolutely loved those days, getting to grips with the perils of machine knitting and combining those newly acquired skills with hand knitting and embroidery to explore my creative style. Fast forward many, many years from 1990 when we graduated to present day. Our paths may have taken us in different directions and geographically we’re very spread out with Nat living in South Africa, Wendy in Berkshire, Angie in Kent and I’m in East Sussex whilst professionally I’m the only one still knitting.
With both Wendy and Angela having kids too it’s not always easy to find time to get together but no matter how short the time those precious hours are always fun (actually they’re hilarious) and worth every effort. So this afternoon as the last few hours of the Sunday slip past and the sun is going down I’m going to sit with a cuppa, a movie and some relaxing knitting and chuckle to myself as I think back on my weekend with my daft, beautiful, crazy friends.
I really hope your Sunday is full of joy for the weekend you’ve had not full of dread for the week to come