Welcome to my new blog.
I want to keep people informed who want to be kept informed about the Drama-Rama. Given that I’m only on Day 6 and am already struggling to keep track of who I’ve updated even when there’s not much to say, I thought a blog might help. Also, most of you will know that I like to write some rambling reflections from time to time (about things both serious and silly) and 140 characters is just not enough for a lawyer!
So: where to start?
Well, I’m guessing you already know this but, unfortunately, I’ve got a brain tumour. I’m waiting for my urgent hot date (scheduled for Friday) with the neuro specialist at the RVI in Newcastle and it seems that surgery is the most likely next step after that. The scans indicate a primary brain tumour but they won’t know what type until they get in there.
My blog name refers to the apparent odds, according to some second-hand Googled knowledge via friends, of two siblings both having brain tumours. You don’t need to be a statistician to realise that those are some pretty crazy odds. I always knew that our family was special but, alas, it’s not in the way I hoped. It goes without saying that I am hoping for a much better outcome this time but it’s impossible not to be going through any of this without thinking of my dear brother and what he went through.
So: how did I get here?
No, I’m not going to recount my life to date (yet). But I’ll give you the run-down of how this tumour was discovered.
Apart from migraines since April and a very slight lack of movement in my right foot since just before then (I think), I’ve not had any symptoms. The migraines were under control with regular migraine tablets and were put down (by both me and the GP) to the result of an incredible four months of stress with little Leo pops (Drama Boy: where DOES he get it from?). As an aside, what drama, after viral meningitis at eight days old, special care, bronchiolitis a couple of weeks later, reflux, pain, little/no weight gain and almost constant colds for 14 weeks.
My foot weakness linked in with the back pain I’ve experienced on and off since I was pregnant with Jennifer, which only got worse after a slipped disc last year and a giant baby (10 lb 11 and a half for those who can’t remember!).
A couple of times within the last month or so, I’ve felt a little bit “odd” with a very fleeting symptom similar to migraine-onset that didn’t turn into anything but it started with a change in level, such as if I sat down, lay down, rolled over in bed etc. Although my biggest fear for the last 12 years has been that I would get a brain tumour too, it crossed my mind a couple of times but, without any headaches, vomiting or anything else, it was only a passing thought. Of course, if I’d realised the long odds of me developing a BT too, ironically I probably wouldn’t have spent any time worrying about it over the last decade!
Anyway, so I was at home on Thursday morning with Leo (Jennifer had decamped to Mam and Dad’s on Wednesday night for a sleepover as is her wont). Graham left for work about 8.10, everything was totally normal and, at what I think must have been at about half 8, I wondered if the Drama Boy might want to bash about on the piano as he’d loved it the day before. So I sat down on the piano stool facing away from the piano towards Leo, who was tearing around the room as usual, gestured and called for him to come to me and then almost immediately keeled over off the stool to my right hand side on to the floor. It was as if I’d had too much to drink and fell off a bar stool, an in-any-other-circumstance comical and cartoon-like fall.
I didn’t black out but for what I think was a few minutes I was totally paralysed. I was lying on my right hand side in an almost-foetal position, trying to move desperately and failing. I was fully aware of sounds (Leo crying mainly and hearing him crawling around me), had my eyes open for at least some of it but my sight was more like an impressionist painting at that point without I think being able to move my eyes to look around. I think I was just looking at the dining table right in front of me. I was also aware of some involuntary spasming and moans coming from me.
So my first thought after I realised I couldn’t move was “F@&£” x 20 and “I’m dying”. I then thought I must be having a stroke, immediately followed by an assumption that I had locked-in-syndrome. I wondered how anyone would find me and Leo as I was thinking that, as a landscape gardener was due at half 9, Mam and Dad probably weren’t expecting me to come for Jennifer until late morning. I also worried that even when they started to worry, they wouldn’t be able to get in as I’d locked the front door after Graham left and left the key in the door. To add to my bizarrely rational thinking, I worried about Leo climbing up the stairs (one of his favourite adventures) and injuring himself as I was pretty sure I hadn’t closed the doors at the bottom of the stairs.
As I said above, I think this lasted a few minutes, and then I kind of flopped involuntarily onto my back. Initially I had a sense of relief as I thought it might be over but I quickly realised I’d moved because my left side had come back into the world but my right side was still 100% paralysed. My vision and eye movement was back to normal and I could see (and feel) that my right side was seizing. It probably took a minute or two for me to realise that I could move my left side enough that I might be able to move to my phone/iPad and raise help.
I dragged myself through to the living room where I knew I’d left my iPad as I didn’t know where my iPhone was. When I dragged myself back through to the dining room five or so minutes later, I noticed my iPhone had actually been about two feet away from where I had collapsed! But such is life… After a few false starts, I spoke to Graham at about quarter to 9 and asked him to call my parents to come and help me (and Leo, who was my primary concern) and call an ambulance as I thought I’d had a stroke.
Within 20 minutes/half an hour, my parents, Jennifer, Graham, the landscape gardener (!) and the ambulance had all arrived. After an assessment, I was blue lighted in to the QE hospital in Gateshead with a suspected stroke. Neurological tests (reciting “British constitution”, “baby hippopotamus”, testing peripheral vision etc) meant my score for needing stroke treatment was low but I was referred for a scan. The good news was that movement in my right arm had almost fully returned with only a mild weakness. My leg’s movement came back gradually over the next couple of days and hasn’t fully recovered, but thankfully I can get myself about without too much trouble at the moment.
Hands down, the most terrifying experience of my life to date!
The initial CT scan showed swelling on the brain and we were immediately told there was a high probability that it was caused by a brain tumour. I had another scan using dye and then referred for an MRI scan, which happened on Friday morning. As soon as I was diagnosed with a suspected brain tumour, the specialists at the RVI Newcastle assumed control of my care, directed the QE and I’ve been referred to them.
The MRI scan was a very surreal experience, partly because they put giant retro headphones on and I was listening to Smooth radio around the noise of the machine! It took longer than I expected, there were about five scans and it took about half an hour overall. To avoid myself getting too overwhelmed and thinking of following in Graeme’s footsteps, I passed the time trying to recite the American presidents in chronological order- it’s what us weirdos do!
For those who are interested, I got the first 18 and then from about 30-44 so I was missing a fair few in the middle! I got the names of a fair few more but wasn’t sure of the order 😟. I feel like I let myself down 😟.
By about 3pm on Friday, the scans had been reviewed and reported on and I was told it was a confirmed primary brain tumour. It’s almost certain I’ll be having brain surgery either for a biopsy or for a “scoop out as much as you can” job. I’ve got an appointment with the neuro consultant this coming Friday at 12 noon so we might know more then but surgery is obviously not then.
So: Current State
The good news is that I’m not in any pain and don’t need any painkillers and I was discharged from hospital on Sunday. I’m living downstairs at my parents’ house (a mile away from our house) as it’s more convenient with a downstairs bedroom and bathroom and, although I’m able to get up the stairs without too much trouble, it’s easier not to!
I’m on steroids to reduce the swelling in my brain, which is causing increased hunger by the day (little and often is the name of the game as long as it’s not too little)! The lodgings and hosts are wonderful and generous, bringing regular snacks and drinks, breakfast in bed, organising the complicated regime of tablets (steroids in a three-day reducing dose system, omeprazole to reduce chances of stomach problems from steroids, anti-seizure tablets to hopefully prevent a repeat of that horrendous nightmare…).
So, despite a pretty scary and uncertain time, all in all I’m canny! I’ve just got to take it a step at a time, hope it’s the best of a bad situation and not get too far ahead of myself.
Thank you so much to everyone already for lovely texts/whatsapps/messengers/emails/calls/visits… I am lucky that I didn’t need to be diagnosed with a brain tumour to know that I’m blessed with amazing family and friends, and I’m grateful for every one of you (even the crazies- most of you?!).
So: What’s Next?
As you can tell from the length of this “introduction”, I’m not always one for brevity, but this is quite cathartic so is as much for me to write about and try to process the ridiculous situation as it is to keep you up to date to the extent you want to remain in the loop. All comments, messages, calls, visits etc are welcome, except when I tell you otherwise, but the only ground rules at the minute are:
1) In a departure from my usual modus operandi, I have decided that I don’t want to look up anything about tumours as I have enough residual brain tumour knowledge from my brother. So, please, no stats!
2) Please keep me in the loop with normality, news, things silly and serious, rant away about Brexit, American elections, whatever is on your mind. Book, film and tv recommendations are welcome! I’m still the same old, obsessive compulsive, stubborn, ranty me!
3) The blog is public, and I’m not keeping this big drama under wraps, so please feel free to share with anyone who might be interested.
Will keep you posted.