Well Sunday 4th August all started pretty normal. Bit of a lie in, time with my beloved Carl and his family. We spent some time with Carl's grandad who was very unwell and this was a very sad day indeed but also lovely to have such precious time all together. I am so lucky to have such a wonderful, extended family through Carl.
We went out for an evening meal as it was actually our anniversary too (7 years!) with Carl's Dad and his wife. We had a lovely meal, laughed, good food and fun. I had a glass of prosecco but nothing too crazy for a school night. We got home around 10pm and I must have gone to bed around 11:30pm ish.
I awoke around 1am with a paramedic stood over me, totally confused and really quite scared. I'd had my first seizure. What happened next was basically another x 3 seizures, x 2 trips back and fourth to a&e, a visit to my GP in between as they wanted to schedule an EEG (at this point we thought it could be epilepsy) but then my 4th seizure (grand mal) happened in a&e and the wonderful staff there decided something was amiss and I had to be MRI and CT scanned. My lovely Carl was also on hand to tell them how out of character this all was, I have never had a seizure in my life and I cannot thank him enough for being there with me.
I'd had a slight headache before going to bed on the Sunday night but nothing major so I thought nothing of this.
I couldn't help but think at this point thank gooodness the seizures happened in my sleep, whilst resting and not somewhere else.
After my scans I was admitted to what they call a 'Clinical Decisions Unit' whilst they looked at all my results. I had a couple of cannulas in both arms with anti seizure and fluids pumped into me. The ward staff were absolutely fantastic. I would like to say thank you so much to the staff of a&e and CDU at the Royal Berkshire Hospital, Reading. I cannot thank you enough- you were all wonderful. You talked to me, kept me calm and gave me good care.
What happened next was pretty crap I won't lie. My mum and sister arrived and I knew vaguely that a tumour had been found (I was pretty out of it as anyone who has experienced seizures knows they make you feel like you have run a marathon a dozen times over and many of the above events have had to be retold to me a few times).
After my scans I was admitted to what they call a 'Clinical Decisions Unit' whilst they looked at all my results. I had a couple of cannulas in both arms with anti seizure and fluids pumped into me. The ward staff were absolutely fantastic. I would like to say thank you so much to the staff of a&e and CDU at the Royal Berkshire Hospital, Reading. I cannot thank you enough- you were all wonderful. You talked to me, kept me calm and gave me good care.
What happened next was pretty crap I won't lie. My mum and sister arrived and I knew vaguely that a tumour had been found (I was pretty out of it as anyone who has experienced seizures knows they make you feel like you have run a marathon a dozen times over and many of the above events have had to be retold to me a few times).
I'd bitten through my tongue too so imagine me tinged with like a Bruce Forsyth effect- it was very surreal.
My neurologist and doctors came and visited my ward and they confirmed my brain tumour and told me that it had all the markings of a low grade glioma however a biopsy may be the next step forward to confirm this. I felt like I'd been punched in the guts, I couldn't accept it, 24 hours earlier I'd been perfectly fine- WTF?! These were all my first thoughts- it wouldn't compute or process in my mind. There were tears, many of them and it was just not good.
So after the above I stayed in hospital for the night. As my diagnosis is underway now I was released the next day on the Tuesday with a few provisos:
My neurologist and doctors came and visited my ward and they confirmed my brain tumour and told me that it had all the markings of a low grade glioma however a biopsy may be the next step forward to confirm this. I felt like I'd been punched in the guts, I couldn't accept it, 24 hours earlier I'd been perfectly fine- WTF?! These were all my first thoughts- it wouldn't compute or process in my mind. There were tears, many of them and it was just not good.
One thing here to mention though as well is that my neurology team did not dress things up, they told me how it was but in a supportive way and made me feel that there was hope and options which is what you want and need to hear.
A funny thing which we discovered at this point is that Bertie is growing on my personality so all the weird sensations and feelings I'd been having are likely to be caused because of Bertie! As I keep telling you all he is a complete bastard!!
A few hours later I met my first Neuro Oncology Nurse and she was nice. She is there to support me and to help me when I have questions or just need to vent and ask things. I will now be referred to the John Radcliffe Hospital in Oxford.
So after the above I stayed in hospital for the night. As my diagnosis is underway now I was released the next day on the Tuesday with a few provisos:
- I must take anti seizure meds for life to control the potential seizures- even removal of a brain tumour can leave scarring which can cause seizures (so this sort of contributes to no.3)
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I mustn't drive for a minimum of 12 months , and those 12 months must be completely seizure free- this was hard at first because I pretty much adore my lovely Mini and im always happy to be the designated driver but I've come to terms with that now. She is metal and also Mum's promised when I'm well again I can have another one or something better (cheers Mum!)
- No alcohol or a minimum of one glass very occasionally- ok so I'm not a major drinker as you know but I like a blow out especially with those of you who encourage me (you know who you are!!) so this is a bit blurghh- especially when you are given news like the above you fancy a few I can tell you but I'm sure we'll manage! Bertie cannot take away my love for life and Ibiza for my 30th is happening bloody like it or not!! Drinks or not!!
So that's really where I am about now. I want to shout out to all my friends and family who have supported me, cried with me, hugged me, called me, sent me cards, sent me flowers, given me gifts, told me words of wisdom and said "Sod you Bertie you can get lost!". I'll say it again I love you all and I wouldn't be able to do this without you all behind me.
With love,
Gem xx
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