journeyofacoupleofsteps

[journeyofacoupleofsteps]

I've just been to what's probably one of many appointments before I go for surgery. Which will be many months now.

I was given a highly detailed description of where the squatter actually is. It's deeper than I thought, I assumed it was a flat pancake but nope.

Then and explanation on what he will do, equipment used. I'll be woozy for much of the time but once opened up, they need me awake so they can prod and poke around my brain to see if it's safe to work in that area.

It's an entirely brand new team that will be working with me for both before and after care surgery.

If Tommy lasts that long, I've been advised to set up a flexible plan for his care. Perhaps a week, as I won't be able to do much.

The nurse whom I met today, will phone me later on and see if there are any questions I need to ask.

At the moment?

I'm drawing an absolute blank and probably will be for a while.

But at least I can still go to that ComiCon with my friend.

When I got home, I burst into tears and wished that my hubby would have gone with me, but realised that it would have gone totally over his head.

I'm guessing he's been listening in anyways

[journeyofacoupleofsteps]

Two weeks to my consultation

I need to find my list of questions or write another load. Ask my friend if it's still okay for her to take me across, as I feel comfortable with her. She is very forthright and doesn't mince words

And I must really make a start on my future plans

[journeyofacoupleofsteps]

I forgot to log this in. Same day as the funeral, when I was back home and having mashed potato and chicken nuggets, a mini seizure sneaked up on me

It didn't last long, merely a few seconds. I was smart enough to spit out my food, set the bowl down and sit quietly until it passed, as it could have been much worse.

It was also a reminder that I've still got that thing to deal with.

Fortunately, a couple of days later I received the amended appointment. Which is January next year. So that's not too far away

In the meantime, I'll just keep taking my meds, keeping a close eye on things and trying not to get stressed out. As I suppose that may also be a trigger as well

[journeyofacoupleofsteps]

I have made the decision to postpone my appointment and ask for it to be rescheduled because right now, I've got a lot to process from the sudden death of my husband

And I know that I'm not in the right head space.

I'm sure that the department will understand but most importantly I hope that my hubby will forgive me and he shouldn't feel any guilt for leaving so suddenly and abruptly like that.

He is with his mum, dad and sister now

Will update you all when a next date is set

[journeyofacoupleofsteps]

Received the appointment to discuss the procedure of this upcoming surgery

And it's on our wedding anniversary

Hubby asked if thats a good or bad thing

Honestly?

I don't really know

I've been tired out and grouchy all day, from yesterday's activities. Mostly hubby stuff

Pay off a bill, drop in a prescription, get a blood test for liver function etc. We dropped into an antique shop then had dinner. Once that was done, head back home.

That's a lot of walking around, as well as push a not so lightweight hubby around in his wheelchair

It's certainly taken a lot out of me but I still keep going. I don't have time or the luxury of relaxing, because we also have a VERY demanding dog

And that's it

[journeyofacoupleofsteps]

Whilst I've got a few quiet minutes before the tornado that is hubby, decides to grace us with his presence, I thought I'd sit and write out my list of questions to ask the neurosurgeon during the phone chat.

I would REALLY like to not inform a certain family member, as I do not trust her at all and she WILL try to interfere. But this will leave hubby totally isolated.

Yes, he can move around a little bit, but it would be nice for him to go out for a couple of hours - weather permitting.

So .. I'm torn now

[journeyofacoupleofsteps]

So ... I've received a letter through the post.

A phone chat appointment to discuss the next steps forward.

Which will be the surgery.

I have no thoughts - yet - give it time.

But one thing I really need to do is to rewrite my list of questions. Even if some are really dumb

And get prepared for my hospital stay

Hopefully it will be the maximum of 3 days

[journeyofacoupleofsteps]

It's been a week since my MRI scan. I'm just waiting for the results, maybe a chat about the next steps going forward. And then a date for the surgery.

I misplaced my list of questions so I'll have to write them again.

Physio have given hubby a rollator and a rolling trolley so that he can move things around without worrying that he will drop them - plates and cups of tea - and falling over, as well as pop to the shop for anything we might need.

The place is getting cluttered with medical equipment. Some can be returned but he is hanging onto it - just in case

I've got an account with Tesco and Iceland for food shopping, so he doesn't have to travel far. And if we don't feel like cooking, JustEat is our usual go to

Speech is starting to be affected, as I tried talking to hubby the other day and mumbled something or other. Bless him, he was patient to wait for me to repeat myself

Movement - as far as I'm aware - isn't being affected

Yet

[journeyofacoupleofsteps]

Mri scan appointment has come through. I've added it to my phone planner.

It is in September

After that?

I have absolutely no idea how fast or slow it'll be for the surgery. We will have to wait and see

Am I nervous?

About the scan?

Nah

Surgery afterwards? A little but it is what it is. It needs doing and I have to have faith in the surgical team for this very delicate procedure

[journeyofacoupleofsteps]

Under the cut - sensitive subject

I hate the waiting around and wish that the hospital would hurry up and book my MRI scan soon. I can't sit around under a dark cloud like this.

And why the hurry?

My seizures are coming back, despite taking my meds as instructed. So I assume that the squatter has increased in size ... or has started pushing against some vital parts of my brain.

It is now starting to affect my daily life,and robbing me of my independence somewhat. I'm constantly tired out and sleeping a lot more. Any effort to do stuff around the house is hampered by fatigue, and concentration totally kaput.

I hate this.

[journeyofacoupleofsteps]

I haven't logged for a while. A lot of things happened all at once last year and it looks as if it's starting all over again.

But the most important thing is ...

I'm waiting for my next and hopefully last MRI scan before making the decision to go for surgery.

And why is that?

Because I am noticing a LOT of things happening with my brain.

My speech is being affected, last incident was when I tried to make an appointment to get my hair done. Thank goodness Suzanne knew who I was and what I needed doing, from the garbled mess that came out of my mouth.

This is not the first time I've had issues, even hubby has noticed and asked me if i was okay. It's been going on for a while and definitely can't be ignored.

I was told that if I left it any longer, the squatter is currently creeping towards the areas that control speech and movement.

I haven't noticed any issues with movement, maybe one of my feet tends to slide a little when walking. But that's because the pavement is very uneven in places.

I'll have to write down my questions in preparation, as well as set up a playlist.

At least hubby can get himself in and out of the house now, so he can fend for himself.

I really REALLY don't want Bossy sister in law poking her nose in, but whilst I'm in hospital, there's nothing stopping her from dropping in and trying to take over.

My plan ... should I lose my speech ... is to get some flash cards. Especially insulting ones so that I can make my opinions known.

But it shouldn't get to that part

I hope

[journeyofacoupleofsteps]

Update on my personal health

Apparently I had an appointment today but I never received the letter *rolls eyes stupid royal mail changing their delivery rosters and reducing the hours. Knew this would happen*

Anyways. I got to chat with my consultant and he said that my squatter hasn't moved much over the last 3 years. Not that this means I can get away with no surgery.

That's still on the cards, but at least I don't have that dark shadow hanging over me now.

I've got another mri scan in 6 months and see what happens after that.

At least I've got a stay of execution

For now

[journeyofacoupleofsteps]

Damn

Had another episode tonight. Just got out of the bath, walked into the bedroom and couldn't speak.

Expecting the worst, I put my glasses in a safe place and sat on the bed, taking deep breaths to try and get a grip, and not panic.

If I went into a full seizure, then I'd be safe and not hurt myself

Got my scan tomorrow, so I'll see just how active this squatter has become and if it has grown any.

Or if it is pushing against some key areas ... like speech.

I had a blip today in Costa coffee. Said the wrong thing and was corrected. I thanked the person for that and not in a snarky way

[journeyofacoupleofsteps]

Haven't written in here for a while. So here goes.

Was told that knitting, I was using my brain.

Yeah, okay. I AM, but it is very intermittent and I always make mistakes. The same applies with my duolingo the maximum time spent is less than 5 minutes and more often than not, I use up all my lives so I have to wait and fall back down the leader board.

Same also applies with reading. I have one book that I only manage one page - if that - and that was two weeks ago. I used to go through books in mere weeks. But lately, I need to be in the mood. And the ones I've read recently, I haven't enjoyed.

Even those ones I've had to a while and tried to reread, it just doesn't feel the same.

Writing. Another pastime I used to love. Recently, it's been a struggle just coming up with one sentence, let alone a 100 word drabble.

I've given up on driving, since stuff slips out of my head in nanoseconds and that will cause accidents.

Same with playing my keyboard. Can't play a simple tune, and I'd been playing for years.

Using my brain.

Yeah, okay. If that's what people want to believe, that's up to them. I know what it is like to live with this 'new normal'. I'm not comfortable about it, but that's life for you

[journeyofacoupleofsteps]

I knew something was amiss with the old noggin. When I was experiencing petit mals all of a sudden. Feeling spaced out briefly at random moments. Especially when I was calm and not stressed out.

And now I can smell strong urine everywhere. I might have a UTI that needs sorting out. But its always when the bed needs changing.

Once a week.

I am so glad I didn't return to driving again. But seriously miffed that my back decides to play up ... just when I was planning to do more walking.

[journeyofacoupleofsteps]

Got my MRI scan next week. It should be okay but having changed my meds to a higher dosage, that was some cause for concern.

Be a wee bit ironic if I tested positive that day.

[journeyofacoupleofsteps]

Struggling with my diabetes atm. Doesn't help when the weather is muggy and uncomfortable either.

Plus ... family dramas are never ending. So my head is battered there.

I am realising that some foods spike blood sugar levels ... even when I think they're okay.

For example: sugar free pink lemonade. I thought it was safe. But it isn't. I usually take a drink to bed with me for when I wake up thirsty. Its normally a can of diet coke or sugar free squash. But I took pink lemonade with me.

Since that's the only thing I was drinking thru the night - just little bits not half a litre or whatever - checked my blood sugars as per usual and they'd spiked somewhat.

Not a great deal but higher than my normal readings of between 5 and 6.

I hadn't eaten anything out of the ordinary, nor did I have a midnight fridge raid - as there's nothing there anyhow - so I knew it was that fizzy drink.

So, it's a case of trial and error.

I've also noticed that my tastebuds have changed - not covid related, trust me there tested negative continuously - but some foods that I used to love, I'm not really enjoying any more