Just a quick update of appointments from today....
Today was about 'routine' appointments, ahead of all the 'routine brain surgery' I will be having! I find such comfort in this...... reminds me this is the day job for so many. Reminds me there are emergencies going on and that I'm not on that list. Puts things in perspective.
These appointments today were actually in relation to the second planned surgery (the 'awake surgery' scheduled for Wed 1st March). This is the one where they 'poke the peas' to see what might happen if....... A far less scary surgery than the first one if I'm honest. But the one that could potentially, ultimately, help remove the nasty, aggressive, cyst-like tumours.
Today I met with a speech therapist and a physio therapist. During 'awake surgery' these are the people that will be talking to me and will alert the surgeon if anything she does is changing my speech patterns or movement. There are a number of things they were checking with me today. Firstly, what are my 'normal' patterns? Equally important is building a relationship. If I am awake and my speech drops away for example, then the therapist has to recognise it, check it, tell the surgeon, and reassure me that it's ok. We have definitely established a relationship of reassurance, and that's really important. I am really quite relaxed about this surgery. It's explorative and unlikely to have any immediate results, but it's potentially the one that could lead to the 'angry peas' getting out of town. Not straight away perhaps and there could be further surgeries later on, but the reality is that this is low risk and could have a massive impact.
Although not really part of the purpose of today, there are a couple of other things you might be interested to know...... Firstly there is no obvious, permanent speech damage from the seizures I experienced. I was pretty confident of this anyway, but nice to have it confirmed. Secondly, my left hand side is a bit weaker than my right hand side. Not worryingly so and may even be just because I'm right handed. My upper body strength is rubbish...... I could've told you that already! My legs aren't too bad, but I haven't used them properly for a while so they need work...... I am getting some tremors down my left hand side, but these could be for a number of different reasons and are not cause for major panic. I need to be aware of them and be honest about them. Monitor them. Confession time...... I'd been experiencing tremors down my left hand side for months prior to this whole thing happening. Never told a soul. Complete denial. Why? Because I knew it wasn't right and I was scared. So I locked it away and didn't say a word. Stupid. Reality is it wouldn't have made any difference anyway - at best I'd have gone on a waiting list to be seen by Neuro Experts. I'd still be on the list and likely would've been for years.
I was also able to set a few parameters today. Probably very bold of me, but very well taken by the very friendly, helpful and patient Medical Experts! Would I accept some weakness down my left hand side if it could ultimately get rid of an 'angry pea' that wants me dead? Yes, of course I would. Would I are if my speech was a bit slurry? Yes, of course I would. Would I even be prepared to use a wheelchair if it meant I have those angry cyst-like nasties removed from my head? Yes, of course I would. I emphasise that none of these things would happen during the awake surgery, but it was good for me to start being able to realistically think about options. It gave me even more hope. My life is going to change, regardless of the outcomes of both of the surgeries. Of that there is no doubt. The first (asleep) surgery is not curative, and the second is explorative. There could be further surgeries, there could be other treatment, there will be changes in my life. What today allowed me to do was to remember that these things are not the most important. Priorities.
I'm not overthinking it. I'm not making massive plans for the future. I'm just reminding myself that I am very lucky. Another reminder that all bets are off. I'm far from written off. Let's see what happens and then make some choices. I could still be back at my desk in a few weeks time. I might live a totally different life. Who knows?? What I'm completely sure of is that I am more relaxed than I have been in my entire life! I am completely stress free. Not overthinking anything, completely optimistic, relaxed. I thoroughly recommend it as a way to live!!
For me this was a big day in other ways too. I have still been struggling with feeling slightly drunk...... perhaps partially medication induced, perhaps shock, perhaps symptomatic of swelling....... we don't really know and probably never will. Sharpening up is important to me. I knew if I could have a relatively 'normal' day that it would be a big step forward. I definitely achieved this. I'd say I'm still 'slightly drunk' Trish, but I am functioning at a much higher level and I feel more and more confident each day. VERY important to get me fighting fit.
Plans for this week remain the same. I'm working on my mental and physical fitness. So daily writing, daily walking, strict sleep pattern (where possible..... improving but not always my own choice unfortunately!) I'm being honest with myself and with others about any negative effects. I'm not lying to anyone, not even myself..... And family are monitoring me and telling me honestly if they think I'm pushing too hard.
The most 'normal' day I've had since 20th January. Another massive leap forward :)
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