Written when I was first told I had a Brain Tumour out of the blue in September 2018:
I guess this needs to be put down because let’s face it, it’s what most people want to ask.
I had (to the best of our and my doctors knowledge) no symptoms. I got headaches but they were always from dehydration and any migraines were alcohol induced. For the last 10mths I couldn’t open my jaw fully but I have always clenched my jaw in my sleep when stressed and apparently I have a small jaw frame so they put it down to that and are still saying it probably wasn’t related.
So what did happen.
My account and memory of everything is largely what other people have told me with a few snapshot images of my own that I remember but here goes..
I woke up on Wednesday 19thSeptember totally fine. I was meant to be flying to Belfast that evening for work and my mother was coming to look after Loli. We had organised to spend the day all 3 of us together before I had to leave so I met her at a great baby and toddler class (Mrs H and the Sing-a-long Band) in Exmouth Market. We went, we had a lot of fun, we went to a few shops and then came home so I could get ready.
This is when it gets hazy. I was upstairs, sitting on my bed watching the Sesame Street Feist 1234 video with Loli as it is her favourite and we’d watched it about a hundred times since the week before when a friend showed it to us. Suddenly I remember feeling an overwhelming weirdness of deja-vu. It’s very very very hard for me to describe this feeling but it just felt otherworldly and like I was looking back at myself from the future. The room wasn’t spinning but it warped and despite the fact I was totally and utterly sober, I felt high.
At some point I ran to the loo to be throw up as I felt overcome with nausea. I’m not entirely sure how but at this point I was in our downstairs loo and Loli wasn’t with me. My mum (thank god she was there) either must have heard or I called her but when she came I told her to leave me alone as I wasn’t actually being sick and just needed to be over the bowl so to speak.
Obviously worried she came back a few minutes later and apparently I was slumped on the floor drooling profusely. I was in and out of being able to speak and (being very stubborn) I kept saying I didn’t need emergency help but to call Danny instead. She ended up calling my GP who told her to ring an ambulance.
Danny arrived first and he immediately called 999 and the ambulance came and whizzed me straight to UCLH as they could see it was brain related. At this point I have flash images of a paramedic, the roof of the ambulance and that’s about it. Danny says I was still in and out of conciseness with my eyes going everywhere. They have since said I was having epileptic episodes/seizures.
When we got to the hospital I was put in the corridor when I apparently went bolt upright, stiff and had a full on fit. I was then in the crash room and the next thing I remember was waking up in a ward. Over the next 24hrs I had numerous CAT and MRI scans and different neurology / neurosurgeons visiting. At first they told us it was either a stroke, a brain infection or a tumour. I can’t remember entirely what I thought about those prognosis’s although I think I thought stroke would be the worst.
When they started saying it was most likely a tumour they were very cautious but did say that whilst they couldn’t confirm at all if it was benign or malignant that they couldn’t see key indicators for it being a high grade malignant tumour so it was currently thought of as low grade and benign. Again they stressed many times that they didn’t want to say that for sure as it’s apparently very hard to tell.
They did tell us that it was in the right side of the brain which is the less dominant side. The left is where your speech is for example whereas my tumour is where my memory and emotions are. They also said, again very cautiously, that it is looks like it’s in an easy to reach place. At this point however they were not talking about any recommended solutions, just that next steps could be biopsies, surgery, radiotherapy, chemo, gammer knife and other treatments but obviously it would all be based on further knowledge which they didn’t have at that time.
Within those 2 nights, 3 days at hospital I was in and out of it from mild seizures, drugs and anything and everything else. I’m not sure I fully processed what was going on other than just wanting to leave the hospital and being so unbelievably disorientated especially at night. One morning I woke at 5am and had a total melt down as I was all alone in a ward with elderly crazy women screaming, alarms going off, security being called and nurses waking me up every few hours to shine lights in my eyes. I called Danny that morning and he rushed in, got into bed with me and we fell back to sleep just holding each other which means more to me than anything in the world. God knows how someone would cope not having that available.
It was for this reason that the doctors finally agreed to let me go home as I pleaded with them that for someone feeling mad it was the worst place I could be. After reviewing the crazy amount of drugs I was on and the support level of care I had they let me free and I was able to go home thank god.
What I hadn’t thought about or realised was that nothing outside the hospital was going to be familiar either. We got home and I hardly recognised it. It wasn’t completely new to me but it was/is totally different. The first morning therefore I also freaked out and when I woke up I thought I was in my childhood home, then I thought I was in our last house from 2 years ago and finally I had to get Danny to hold me again and make sure I was safe. I woke up not knowing whether I was still in a dream or my dream was reality as they felt so so real.
When Loli came to see us in bed later I was astounded how different she was to me. Like a completely and utterly different child. Her face was totally different and she was so much older in a physical and developmental way than I remembered. It felt like I’d not been there for 6 months of her life but also we had another child in our house.
This sounds horrendous and sad but I was and still am in total awe of this. She’s even more beautiful to me and it’s just so fascinating to watch someone develop like that for me overnight. Maybe when you see it everyday it’s still amazing but it’s not as starkly obvious as it feels to me right now. And I know I’m her mother but she honestly feels like the most incredible girl in the world and that’s in absolutely no way me trying to brag or say she’s different from other children.
It also might be possible that in some way she has picked up on what is going on and is being especially sensitive. She knows ‘mummy’s poorly’ and she says to me frequently that she’s going to make me better. I might just not remember but her tantrums feel less frequent since this has all happened or maybe I’m just more patient and kind to her which stops them occurring in the first place. She also might be just purely enjoying all the extra attention she’s getting from her favourite people in the world, her Yaya (my mum), her daddy and lots of other best friends and family being around and everyone else being extra special with her. Whatever the reason I’m just so grateful that she’s in a good place and happy. Maybe this can be a positive experience for her too.
In terms of what has happened after the initial diagnosis we have had one appointment with a neurosurgeon since who was genuinely one of the nicest people and couldn’t have been more caring, understanding and helpful. For some reason I always thought Brain Surgeons would be unapproachable but he was so gentle and kind. We sat with him for over an hour where he explained so much, listened and answered everything with brutal honesty when we needed it. The difference this makes cannot be understated and if he is like this with everyone he is one incredible doctor.
So, we were told in that meeting the following:
The internal multi-disciplinary meeting (MDT) that happened that morning reached a unanimous recommendation after looking at all the scans and tests that the tumour should be removed without having a biopsy first. The reason being is that the treatment whether its benign or malignant would still be to remove it so why go in twice. Also Apparently even benign tumours can become malignant very quickly. Once they’ve removed it they can do the biopsy and if I need cancer treatment that will happen after and all those options will be discussed then.
The surgery itself will only be an incision – the doctor was very concerned to tell me my hair would be ok which made me laugh. I was actually thinking an undercut would have been quite cool! But the recovery would be very hard, long and slow. I’m likely to be in hospital for up to a week and then he mentioned about 6 weeks of extreme fatigue at home after. Apparently turning a kettle on will be tiring.
Weirdly this is what scares me most. What am I going to do for that amount of time considering I find even watching TV too surreal and I’ve never been good with boredom. But maybe I’ll be so out of it I’ll just sleep and won’t care. Goodness knows what Loli will be like to me after that – speaking Japanese perhaps?!?!
The only bit of what he said that really shocked me and was upsetting was the fact that there is apparently a high chance that even if it’s completely successful it will come back. Once you have it you have it. Who knew.
So life expectancy is affected but he didn’t say it was extremely reduced. And you do get constant monitoring which I have since found out means as soon as they detect anything they can use non-surgical methods to get rid of it again hopefully so that’s great news.
So yep, before and after. I am now Cordelia with a brain tumour. Cordelia and my Buttercup – more of that to come.
What happened since with a further diagnosis of brain cancer can be seen throughout my blog and specifically on http://bottlemeupbuttercup.com/so-here-we-are/