It's been ages since I've written on here and I'm sorry but I thought I'd take a trip to hell, I didn't bloody like it so I'm back to share the tale. I't not a pretty one!
Soooooooooo as you know (or maybe you don't) I was booked in for Amos's eviction on 20th July, on the 18th I was taken as a birthday treat to a spa evening with my girls, I loved it, Amos didn't and towards the end of the evening he kicked off BIG STYLE, seizure mark 2 was a massive show, blood spitting, getting dragged out of a car, taken to hospital by ambulance, massively failing the cognitive tests, did I know my name? Nope, Could I touch my nose? Nope, could I close my eyes? Nope, but I could stick my tongue out and laugh at nothing. Do I have any memory of that????? Not a damn thing, 3 days of complete memory loss, 3 days of not knowing anything that I said or was being said to me. I could cry about it but honestly what's the point? I could also cry about the fear I put my amazing daughters under but they were truly amazing, strong, brave young women that must have come from planet amazing because I am not amazing enough to have created them - despite what everyone tells me, I don't ever remember being that brave or strong and even penning these words brings me to tears at the fear I put them through, mothers are not supposed to do that.
Sooooooooo, the operation was done, my head has been shaved and cut open and Amos (well most of him) has been evicted I say most of him because there is a tiny bit left that will be eradicated with radiotherapy soon. I was taken from the surgery room to recovery room and woken up and greeted by my amazing girls and by my auntie and cousin, they must have cried too. I was then taken to intensive care where I spent the night listening to the bells and buzzers that an intensive care unit will have while the staff are looking after the very ill who will leave that unit with one door or another, I don't want to die in this room (or any room TBH) so I plug my headphones in and watch coronation street and love island.
I get taken to the neuro ward, now I have something important to say, I never ever, ever want to hear anything bad being said about our NHS ever again, I have never experienced kindness and care from the staff who have looked after me, they always have a smile, they always work so very very hard and they will answer the same question a million times without wanting to scream, I have no short term memory and know I am asking the same thing a million times. I have been brought gifts by strangers, I have no idea who have brought the mountainous pile of chocolates, whoever you are thankyou, they got shared around between other patients and the staff. I cannot eat 8 boxes of chocolates and fit into a mother of the bride dress and I def don't want to be the mother of the bride whilst wearing a tent!!!!! So the staff got to share them around, chocolates is the least way of saying thankyou, but it's the only thing I have right now.
I have a bowl type thing on my head, I am not attractive and I never knew I was so vain until now, I literally look like crap but I am alive so I'll just avoid mirrors for a few days. The bowl thing is removed and a very large plaster is put on my HUGE cut, OMG my head has actually been cut open WTF!!!!!!!!! At this point I also have a urine tube, I do not like it, I am soooooooo lucky that I have an amazing friend on my ward as one of my care staff, can she please please please take this tube out? With the best will in the world I do not want to show my fanny to the world but she had to see it, for that I'm sorry but she didn't care, how do these people have such compassion and kindness? I don't know but I am so proud of them.
My memory is still bloody awful but my visitors over the next few days looked scared that they might hurt me or make me tired, they all bring hugs and gifts and a little bit of time, I have amazing friends and I am so so lucky. Now I did say before the eviction that I'd stop swearing, I lied hahahahahahaha
They are ready to release me from hospital but I have to stay with a friend, I'm not allowed on my own just yet. I was lucky to have a fabulous friend who gave me a bedroom, washed for me, fed me and fussed over me. Ooohhhhhh I could get used to being pampered but after 10 days I needed a kick up the bum to get back to my own place and try to live a life around sleep, no gym, no work, no bending over (yep that's true, I'm not allowed to bend forward, it might be too much movement for my recovering brain). Two days later though I have to go back to the hospital to have the staples that are holding my head together taken out, this is my biggest fear right now, I have 39 staples holding my head together, I think it's going to hurt to take them out and I think it's going to take all morning, sooooooo my soon to be son in law (literally just about the strongest man in my life) has taken me, held my hand while it takes the doctor 5 minutes of barely no pain to remove the staples, I cried a little bit but more through relief than fear. Time for a cup of tea I think :)
The first week was really difficult, sleep was the worst, I've been on steroids for two weeks, the are to stop any swelling in my head, I mean really who wants a swollen head????? Sleep patterns are just ridiculous, waking up at 1am 3am and 5am. The 3am wake up was the one that created a shopping monster, I shopped every night for a week, I now have a wonderful collection of matching nail varnish and lipstick (if I'm going to look like crap at least do it with matching ail varnish and lipstick), a pressure king pro, I have to say I bloody love it, what a brilliant piece of kitchen equipment, a fitbit, I love that too, getting the step count up. A silver bracelet to put the fitbit in so that I'm not wearing it in a plastic bracelet. A lovely new phone cover and various other bits and bobs that I have been wanting for a while and just thought sod it.
I've had to learn some great new skills, to get dressed sitting down, put shoes and socks on by lifting my feet to me. To not overdo things, I think I can run, I can't my brain doesn't like it.
The first two weeks after the steroids I also couldn't see properly, not blind but like a fog over my eyes, I sort of knew this would go away but of course nobody can tell you that will happen for definate because it just might not. I get tired, really really tired. Sleep in the day for an hour or so and for some people this can last for years, I don't want to be one of those people, I want to be normal again. And steroids make you hungry, not just a little bit, ravenous, I could eat a horse most of the time, I've never known myself to be soooooooooo hungry, that mother of the bride dress is really going to look like a tent if this carries on!!!!!
Lovely that you feel well enough to write your no holds barred blog....well done. Are you still taking the turmeric and cdb oil plus all the other bits and bobs you were using before your op? How long is it til the wedding?
ReplyDeleteHi Sandy, I hope you are well. I am so sorry I didn't reply to your message months ago. I didn't know how to. Loving the new laptop thingy. In answer to your questions, yes I do still take turmeric pretty much every day with warm almond milk, it tends to be my drink before bed most nights. I don't take the cbd oil anymore, tbh I wasn't brave enough to take it with the anti seizure meds so stopped. I still use my oils with jasmine and frankinsense and I also use one with peppermint and rosemary oils, they are great for tired or headachy days
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