One Week to Go!

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!

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.

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.

Hotels and Accessibility

I thought I would do a quick post to kill time whilst on a long train journey.

The Ibis room in Glasgow I just stayed at was so close to being accessible, but failed for a very simple, fixable reason. 

The bathroom was excellent - wet room style with shower stool and plenty of grip bars. 

However, getting to the bathroom would be a problem for anyone with a wheelchair larger than mine (a Quickie Helium to give you an idea).  The gap between the bedroom door once opened, the end of the bed, and the wall was a squeeze for me, and therefore needs to be much bigger in order to accommodate a variety of wheelchairs.

That is pretty much it, and by changing the layout I am sure it could be fixed.

Engaged!

Yup, back in February. And now that University is over and my dissertation is in, I can start planning it properly - my first wedding dress appointment is in June. *EXCITEMENT*

The Waiting Game

Sometimes you have to take things into your own hands and make things happen. Finding the waiting times for the Baclofen pump surgery ridiculous, I rung up my surgeon's secretary and tried to get an ETA on waiting times - they were not good. I could be married by that point and still not have it (oh yeah, by the way, I got engaged, woo!). So I asked if I changed hospitals, would the waiting time be shorter, and BINGO! They gave a rough waiting time of 8 to 12 weeks - GOOD GOD. If I had known that I would have changed waaaay sooner.

So I am now on the waiting list at the new hospital, and in two days time I meet with my new surgeon so I can get to know who he is. This is awesome news, but I am going to remain cautiously optimistic as with hospitals things can change very quickly. But still, YAY!

The Good, the Bad, and the Ugly Part II

The Ugly (cont.): I can only assume the pain blinded me to all sensible decisions, as even after that I STILL decided to travel back on the train. Instead of, you know, the sensible choice of going to the nearest A&E. One bumpy taxi ride later, we are nearing home (my street at the time was full of speed bumps), when I finally decide we better head to A&E. The taxi driver was awesome, and did his best to drive has carefully as possible.

Once at A&E, it was a loooong wait (without pain killers) before I got seen, with Ben having to explain the procedure I had had earlier. Over and over again. Finally I was admitted, and by this point the spinal headaches had kicked in, which as anyone who has had needles in the spinal area will know, are the WORST. HEADACHES. EVER.

And so, sweet, sweet pain relief in the form of morphine arrived.

The Good: I finally got out of hospital just over a week later, all scans and blood tests fine, to come home to a brand SHINY NEW WHEELCHAIR! Yup, my Quickie Helium had arrived - good timing, right? The move into the new bungalow happened a few weeks later, so even more great stuff!

Also, my re-trial was set for a later date, and this procedure went without incident and was 100% successful! The best way of describe the feeling over Baclofen is of a warm, floaty feeling and most chilled out I have ever been ever. If they could have put the pump in then there I would have been all "HELL YEAH!" I also slept like a log that night, which never happens unless I am absolutely knackered.