The countdown has started! Just one week to go and I will hopefully *fingers crossed* be having surgery. This Thursday is my pre-op appointment for blood tests, MRSA swabs, and an ECG (if necessary). I am working all this week, so that will help take my mind off it and make the week go quickly.
There is so much to get organised - for instance, a new bed, as the current one makes my Occupational Therapist cry as it is impractical (too low and also falling apart), plus the kitchen needs to be reorganised as the mugs are all on the top shelf and some of the dry foods need moving down too.
It's finally happening, woo!
Monday 23 July 2012
Tuesday 3 July 2012
MAJOR UPDATE
Ok, so Hell hasn't frozen over, nor have the Gods torn the skies asunder - BUT I have a date. Yes, you read correctly, a DATE for the operation - 30th July THIS MONTH.
Yesterday after my ranty blog post I decided to force myself to make another phone call to my Baclofen nurse for an update. She said due to cancellations everything had been pushed back and my surgery would most likely be in September. Even more subdued than earlier in the day, I sent an email with the bad news to Ben. Literally within seconds of sending the email, my phone rang. It was the nurse calling me back. She apologised, and said she had re-checked the diary, and that I would be having surgery 31th July.
This was followed by stunned silence.
Me: ...What, as in, this year, July?
Her: Yes, this July.
Me: No way. You're not joking are you?
Her: No, that is the date (slight laughter in her voice).
Me: OH MY GOD I AM GETTING THE PUMP.
After frantically phoning around every family member possible, I noticed an voicemail from the nurse saying that it was the 30th, not the 31st. EVEN BETTER. I then spent a large part of the afternoon wandering around the house in a state of dazed excitement.
Then Ben and I celebrated with delicious curry and TedTalks. Awesome.
Yesterday after my ranty blog post I decided to force myself to make another phone call to my Baclofen nurse for an update. She said due to cancellations everything had been pushed back and my surgery would most likely be in September. Even more subdued than earlier in the day, I sent an email with the bad news to Ben. Literally within seconds of sending the email, my phone rang. It was the nurse calling me back. She apologised, and said she had re-checked the diary, and that I would be having surgery 31th July.
This was followed by stunned silence.
Me: ...What, as in, this year, July?
Her: Yes, this July.
Me: No way. You're not joking are you?
Her: No, that is the date (slight laughter in her voice).
Me: OH MY GOD I AM GETTING THE PUMP.
After frantically phoning around every family member possible, I noticed an voicemail from the nurse saying that it was the 30th, not the 31st. EVEN BETTER. I then spent a large part of the afternoon wandering around the house in a state of dazed excitement.
Then Ben and I celebrated with delicious curry and TedTalks. Awesome.
Monday 2 July 2012
Still Waiting
With increasing frequency I have been asked the question "When are you having the surgery?" Originally I would reply with an optimistic "in a month or two hopefully," but now I am considering responding with "When Hell freezes over and the Gods tear the sky asunder."
My patience is starting to wear thin. Looking back when I started this blog, it was over two years ago. Two. Fracking. Years. And I have only recently made progress so far because it was I who did the incessant phone calling, chasing up letters, appointments, and waiting lists. It was I who decided to make the enquiry about changing hospitals to speed up the process - no one mentioned to me it might be quicker until I joined a rehab unit and one of the nurses casually mentioned it. I only changed as a last resort - a big decision since I had been with my original hospital since I was 17, and was like stepping into the unknown.
It is the constant phoning that is testing my patience. I have said before, both places probably think I am a crazy stalker patient, but if I wasn't so persistent, I would have never found out that I was never put on the waiting list for a Baclofen trial, that the letter mysteriously went walkies in the post. Don't get me wrong, the NHS is a brilliant thing to have, considering the fortunes I would have to spend in a system like the US, but good grief do they make you work for it.
My family and now fiancé are frustrated too - my mum and fiancé have been to most of my consultations, trials, appointments, etc. He has put up with moving around finding The Perfect Place suitable for when the pump finally happens, supporting me when I went part-time at Uni, thinking that This Would Be The Year. Thinking about it, everything has been in preparation for it, including the acceptance of the changes it will bring. But stretching out the waiting process is horrible, bearing in mind my phenol injections have worn off, I am on no kind of medication, and my increasing tetchiness must make me a pain to live with.
So, this week, again I will be ringing up just to get a hint of a date, as I am just not going to assume "things will happen."
Rant over, but it felt GOOD. Now when I go home I will probably vent further anger shooting some Banshees in Mass Effect 3.
My patience is starting to wear thin. Looking back when I started this blog, it was over two years ago. Two. Fracking. Years. And I have only recently made progress so far because it was I who did the incessant phone calling, chasing up letters, appointments, and waiting lists. It was I who decided to make the enquiry about changing hospitals to speed up the process - no one mentioned to me it might be quicker until I joined a rehab unit and one of the nurses casually mentioned it. I only changed as a last resort - a big decision since I had been with my original hospital since I was 17, and was like stepping into the unknown.
It is the constant phoning that is testing my patience. I have said before, both places probably think I am a crazy stalker patient, but if I wasn't so persistent, I would have never found out that I was never put on the waiting list for a Baclofen trial, that the letter mysteriously went walkies in the post. Don't get me wrong, the NHS is a brilliant thing to have, considering the fortunes I would have to spend in a system like the US, but good grief do they make you work for it.
My family and now fiancé are frustrated too - my mum and fiancé have been to most of my consultations, trials, appointments, etc. He has put up with moving around finding The Perfect Place suitable for when the pump finally happens, supporting me when I went part-time at Uni, thinking that This Would Be The Year. Thinking about it, everything has been in preparation for it, including the acceptance of the changes it will bring. But stretching out the waiting process is horrible, bearing in mind my phenol injections have worn off, I am on no kind of medication, and my increasing tetchiness must make me a pain to live with.
So, this week, again I will be ringing up just to get a hint of a date, as I am just not going to assume "things will happen."
Rant over, but it felt GOOD. Now when I go home I will probably vent further anger shooting some Banshees in Mass Effect 3.
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