I am fast learning that the best days will always follow behind the biggest meltdowns....... Last night was rough. It was raw and emotional and exhausting. And NEEDED! I hate that I put the Big Man through it. But I need to get all that emotion out in order to let the positivity back in.
Today I started slowly as usual. That's partially due to blood sugar issues caused by the medication, and there's little I can do except monitor it and manage it as best I can. Which I am doing. Fin helps me measure it and is very strict with me!
The biggest thing for me today was changing my meds, in agreement with my neuro surgeon. They don't want me in for surgery all medicated up, any more than I want to be taking medications. It's a close balance though...... the aim is to get any existing swelling to as low a level as possible, whilst also trying to make sure epilepsy is kept under control. Getting the mix wrong could spark more seizures. In a massive step forward for me, my steroids were reduced today. I am also reduced to two medication times per day only - 7am and 7pm. In the beginning I was taking different mixes at 7am, 12 noon, 2pm and 7pm....... so twice a day is a big step forward. The quantities are now down overall, and the spread throughout the day is also down. That's a big step forward. Plus there were no notable negative outcomes. My left side is a little shaky still...... that might be a little worse, but I'm keeping an eye on it and it's not something that will finish me off!
I just felt so much more like myself today. 'Slightly drunk' Trish is still there. But she's only very slightly drunk. I can hold a conversation, I can remember the day/ what's going on etc. I still write pretty much everything down in lists, but I don't actually need to refer back to them much of the time. It's as much a security blanket now. Plus it helps us manage all we need to do as a family..... there are so many appointments now ahead of surgeries etc, plus we all have different things we're responsible for...... It's become more about managing our house again..... kind of the way normal people live!
I had some wonderful visitors today. I enjoyed their company. I did some light housework. I went for a walk. I challenged myself mentally and physically. I did it like a very close to normal person.
At one stage I would almost have believed you if you'd told me the whole thing was a big joke and had never happened...... Unfortunately I know that's not true, but I continue to be reminded of the harsh, but fortunate reality of this whole situation..... I have malignant cancer. Two very different issues, two very different treatment plans...... BUT TWO TREATMENT PLANS. Two opportunities. I do not have cancer throughout my body. I have not been given a diagnosis that involves a timeline. I have been given a number of steps forward. At each stage we will see what happens and make our next decision. Take our next step. We get the opportunity to do that. So many do not. Our lives have become fluid. Day-to-day. Is that so bad?? I don't think so. In fact, I thoroughly recommend it as a healthy way to live.
I am likely to become one of the most unpredictable people you know. But also the least stressed you'll ever meet.
I'm looking forward to spending a relatively quiet weekend with friends and family. I'm looking forward to getting into surgery on Wednesday and getting on with the next stage in the journey. I remain completely convinced that this is not my time. It's been a month and those angry wee peas have been quiet as mice...... they know they can't beat Trish and the best Support Team ever gathered together!
I am the luckiest, unlucky girl in the world. You guys continue to provide me with the backup and positivity I need to remind me of why this is just a curveball from life. We fight on! And we will win.
xxxxxx
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