It’s the 27th all the 30th March and I’m currently two day of my current blog. I am you’re doing the dictation app with is very difficult. It is an unbelievable thing to work in my is situation.
I’m not I being do this blog for longer in my current state.
The 1x text I have typed so far has taken me nearly 1x hour. It is crazy. I can’t talk.
Although the is hard to say things that to us say it in texts. I cannot to say it so frustrating and although is to get better in the in the future it is all fall at the moment.
I can read in my head what but I cannot say but I what I am trying can’t say.
This is terrible?!
I cannot to in this in be things soon I need to stop an hour and think about this.
I think I will use the videos and keep them small for the time…
…
“James, the difficulties you are having after this surgery are called DYSPHASIA and VERBAL DYSPRAXIA…
…dysphasia is a difficulty with language and can include understanding, talking, reading or writing…
…dyspraxia is a difficulty planning the movements you need to speak and often longer words are harder than short words”
Morning all! I had a had an okay nights sleep, although King’s is next door to Denmark Hill train station so there are plenty of trains whizzing past during the night. That said there is no other place I would like to be having my surgery tomorrow.
In the end, I was not taken down to the MRI scanner last night. The nurses woke me up at 6ish and I was wheeled down. Once the results have been assessed, the consultants will hopefully come and see me to discuss the surgery and what their expectations will be.
5th April – 09.30
Guess who just popped in? It was my amazing speech therapist H~ who guided me through my first surgery back in 2018. She’s the person who I do all the mental exercises with whilst awake in surgery tomorrow.
She is coming back later so we can set a new bar for comparison in the morning. Does that sentence make sense? I think it does?!
It was so nice to see H~ and say thank you to her. I was told she would be with me but until I actually saw her, I didn’t know for sure. Hooray!!!
Cement-appuccino …!
5th April – 11.00
The surgeons have just been into see me with some information. This will be a very good test of the dictation app – there are some very long and peculiar words here! Here we go…
So….they said that from this morning’s scan they are not actually certain there is tumour regrowth…
…instead it may be ‘radio necrosis’ AKA damage to brain tissue caused by the radiotherapy I had back in 2018. Wasn’t expecting that?!
They gave me an option not to have surgery, but instead to take regular scans to track its progress (and whether it’s A or B). After discussion with the team, I have decided to proceed with the operation as planned.
Once inside the skull, they will know which one it is (it is notoriously difficult to distinguish between tumour growth and necrosis from a scan alone).
So there we go! There’s a huge amount of extra information but I think that’s enough for now with only 13 hours before being carted to surgery.
5th April – 19.20
Wish me luck. Thanks for all the well wishes. Time for my last supper…(until tomorrow)…xx
Unless you’re friends with me on Facebook this initial blog post will not make any sense. So for those who aren’t here is a copy and paste of the post:
Last month (March) was #BrainTumourAwarenessMonth 2022.
Without sounding like a broken record, brain tumours are the biggest cancer killer of children and adults under 40 yet they receive less than 2% of the funding invested in all things cancer each year.
The Brain Tumour Awareness month aims to give an insight for anybody affected by them – be it patients, their friends and family, to help the brain tumour charities, oncology teams and specialist cancer nurses.
Brain tumours have actually been given a lot of air time this week after the very sad news of the death of Tom Parker who died of a inoperable Grade IV tumour. He dealt with his diagnosis, dire prognosis and day-to-day life as a husband and dad with such dignity and positivity #RIPTomParker
As you probably know, I have a Grade III malignant tumour and have been suffering with my own issues of late. Since finishing my latest batch of chemotherapy in November last year, I have been suffering with a lot seizures and problems with the right hand side of my body.
I have been working with the incredible neurologist team at King’s College Hospital and the decision is that I will be having another awake brain surgery in 2x days on Wednesday 6th.
I apologise for not updating people or my blog for a while because it’s almost impossible for me to sit at a computer, concentrate and type currently. My speech is also affected.
I arrived at King’s today, two days before surgery. I would love to try and update people using dictation on my iPad – I’ll try anyway (however brief)!
Wish me luck with the app…(and for the surgery too)…! xx
4th April – 22.45
So now that you are up to date, today has been quite a slow one but it’s got all the paperwork out of the way and COVID tests and MRSA bits done. It sets me up for a good day tomorrow with the surgeons, the nurses, the speech therapist and an MRI scan.
I’ve got my own room for the time being although I think that’s usual practice on arrival in a neurological ward – he says like he knows!
I don’t think much of this TV show though…
Excuse the feet…
4th April – 23.07
Okay they are putting a cannula into my hand for a potential MRI scan this evening. I guess a hospital never sleeps. Good job I’ve got my clean PJ’s on!
Will they or won’t they…
The nurse said it may happen or it may not happen tonight so I’ll try and get some shuteye whilst I can. I’m quite enjoying this dictation app, it’s a lot easier for me to use!
~ astrocytomajames ~ 