A very short blog post you’ll be grateful to hear. Sue Bourne (who also made the brilliant documentary Fabulous Fashioistas) has made a film about 12 people who were each given a terminal medical diagnosis. Now whilst it may seem like a ghoulish or depressing subject this film is anything but. I missed it when it was first broadcast but have just watched it on the BBC iplayer and I’m truly glad I did. I found it uplifting that each of them is facing their mortality on their own terms and with such dignity.
Please watch if you can it’s available for another 16 days A Time To Live
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
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.
This morning I bypassed the usual onslaught of depressing morning news and took time to sit in silence for 10 precious, peaceful, mindful minutes. I then went for a 60 minute power walk along the seafront bathed in the morning sunshine with my fingers tingling from the cold, icy air. I now feel I’m truly ready for another beautiful day doing what I love.
It’s said that laughter is the best medicine. Well for me this view comes a close second.
Back in the first of my 31 day challenge blog posts I talked about how my work planning now needs to be more detailed in order not to overly stress my wobbly brain. I remember at the time thinking I needed to make some new years resolutions but given that mentally I can only cope with one thing at a time, it all became a bit too much to process and so none were made.
I recently started following Kristine Ofstad (@blogitbetter on Instagram) who offered some encouraging and inspiring thoughts on setting yourself goals. Based on studies done by the Dominican University the thinking is that we’re more likely to achieve our goals if we actually write them down. More than that (apparently) we’re even more likely to achieve them if we write a progress plan and share it with others. Gulp. To be honest that seems more than a little scary to me, I suppose like a lot of us, fear of failure and disappointment is holding me back. With this in mind she suggests setting short and long term milestones to chart progress (such as what do you want to achieve and by when) and share it on your blog to make yourself accountable. What? That’s even more scary!
So, as I said to myself before I went for my recent level 1 cycle training session ‘it can’t be more scary than having your head sliced open’ so I made a list of goals and milestones for 2017 and here they are. (Some are work related goals, some projects I’d like to make from my Ravelry Favourites and others are personal fitness goals).
Read 6 books in 2017. This may not seem much but I still have problems with concentration.
Start driving again before the end of February. I had to stop driving when my tumours were diagnosed and haven’t driven for 7 months and the longer I leave it the more nervous I’m getting.
Walk from Hove to Rottingdean by 1st April 2017. 7 months off work has meant I’ve put on a lot of weight. I’m horribly unfit and need to shift my bum.
Cycle from Hove to Kemp Town by 1st May 2017. I never cycled as a child but learned as an adult and am hilariously wobbly on two wheels.
Knit a top down garment. I’ve been in love with Bristol Ivy’s Svalbard for a long time now so this will probably be the design for tackling this technique
Design a stranded colourwork garment using some of my Jamieson & Smith 2ply Jumperweight stash.
Design using the double knitting technique. I recently learnt to do this intriguing technique and loved the results
Complete the 31 day challenge then commit to blogging regularly twice a week
Publish 12 new designs by the end of 2017 whether independently, collaboratively or in a magazine
De clutter my office of excess knitting books and my loft of excess yarn by the end of 2017. Contrary to popular belief you can have too much.