It’s been ages since I have written something. Quite frankly, life has held a tight grasp on me, taking away my thoughts and my muse. One could call it writer’s block I guess…
This is the first blog I am writing in a state of health I still can’t quite grasp I have reached.I had another follow up yesterday – one of many in the last year, well ok, the last 13 years to be exact. But this was to be different.
A few weeks ago I was scheduled to have another, thankfully very minor procedure done to improve my voice. It holds the lovely name Ishhiki Thyroplasty. Those that have heard me after the LTR know that I has trying my best to make myself heard, but often with very little success, at least in crowded and noisy environments.
This was one procedure I was actually looking forward to – and NO, not the drugs contrary to popular belief. It was because I was standing a chance of getting a more audible voice, improving my quality of life, getting some of my personal identity back. And yes, being able to shout again…. hopefully.
I went in as usual to participate in running the gauntlet from one doctor to the next and actually saw familiar faces. Although I could barely recognize the anaesthetist involved in my previous two operations as he had grown a full beard.
And so the waiting began. And I waited and waited and waited….. as usual. This time round it was slightly different as I wasn’t alone – at least not totally. This ISS gang has turned into a very tightly knit community and friendships have emerged from it. The head-administrator had come all the way from Australia to have the reconstruction surgery done and funnily enough she had the procedure the same day as I had mine. But as I was classed as day case and she as in-patient, we were in different parts of the hospital. But, Facebook Messenger is a wonderful thing to say the least. We had kept each other company throughout our waiting time. It is good fun sending pictures of hospital couture and comparing different designes.
My time came earlier as the larger procedures tend to be done at the end of the day. So, said anaesthetist was responsible for sending me off to the land of nod, but not before I had the pleasure to be introduced to a visiting American doctor, who had been working with my consultant at this point. Talk about feeling like an exhibit again. But, I did go through my medical journey and couldn’t help but embarrass my surgeon by saying ‘he is the man‘ (he IS the man!).
Another thing I couldn’t help doing was to make sure the anaesthetist would be using plenty of TLC for my friend later on. I would love to know what he was thinking at that point. Probably something along the lines of ‘aren’t there nicer places to meet than in operating theatres?‘ The going under bit wasn’t all that pleasant for me as they did not use a diffuser this time but injected the happy stuff directly into the IV canula. Sufficed to say, that stuff stings like hell! I mean, come on, this is supposed to be a gentle, pleasurable experience, not a ‘get this bloody needle out of my arm RIGHT NOW!‘
The next thing I remember is waking up in recovery. It was tough coming out of the land of drugs, more so than usual, but that was nothing that alarmed me. What ended up confusing the hell out of me was ‘oh, you can go home after this‘. Excuse me? I was told I would be staying over night, had made arrangements and now I can go? Don’t get me wrong, I dislike hospitals at the best of times but even then I prefer knowing what is happening (yes, I admit it, I am a control freak of sorts). Now, pair that up with not being allowed to talk at all, it is rather difficult finding things out from other people. I felt like crying. Well, I did actually cry.
I had a lovely recovery nurse who never left my side. She did her utmost to get me onto the ward as soon as possible. As I was being taken to my resting place for the night, I happened to bump into the next Guri Girl as she was being wheeled to the operating theatre. It was a ‘reality TV moment‘ as pointed out by the anaesthetist. I couldn’t speak so I did the next best thing as far as I was concerned – I grasped her hands and squeezed hard in reassurance. And so I went my way and she went her’s.
As far as wards go, this was the nicest I have been on in this hospital. I even had a small room that was occupied by only two other ladies. There was one downside which showed up quickly, but I managed to nip in the bud just as quick. You see, when you are not allowed to use your voice you are in a way, totally helpless. It doesn’t help when people don’t take the time to actually listen to you. Worse, when they make you feel like complete morons. I was trying to order dinner and had asked a few questions regarding what I could order. As usual, it was assumed what I was asking rather than waiting to find out what it was I was actually asking. And to top it off, in the end the lady opposite me then used baby-type gesticulations to try and get me to understand what she was trying to tell me. This was despite me saying several times that I am fully capable of hearing and understanding, that I just wasn’t allowed to talk. In the end I went to the charge nurse and made it clear I wasn’t stupid and didn’t appreciate being treated as such. Thankfully that resolved the issue but it is a shame you have to take a stand and get your point across rather bluntly at times.
The night went by quickly, well, as quickly as it can in a hospital, I was picked up and then the real challenge began – total and utter voice rest for three days. Not easy when you have a six year old to deal with as well. I did end up enjoying my time of vocal rest however as I could easily keep out of most situations.
And then the moment arrived. Day for post-ITP: I was totally scared to actually use my voice. I just did not know what to expect. I remember I kept thinking ‘what if this hasn’t worked, what if my voice is worse than before, what if, what if, what if,……‘. It had taken me a good part of the morning to pluck up the courage to speak for the first time. And you couldn’t really call it speaking, it more resembled a croak or something. But it was audible.
With that would begin the journey of speech therapy, which I am still undertaking regularly, accompanied with daily vocal exercises (and yes, they still make you feel totally silly)
And of course another follow up with my surgeon was scheduled. The main man called me through himself, stuck that hideous scope down my nose and told me something I didn’t think I’d be hearing for a while yet: ‘Come back in 12 months‘. For me these words feel like ‘my dear, it is over.’ It is finally over. And I still can’t grasp it. To know that I won’t be facing surgery after surgery to enable me to breath… there are no words for it. A 13 year long chapter is closed. And it has taken three major surgeries and countless minor ones to reach it. Ok, so my voice is not as it was. There are things I probably won’t be able to do with it. And moments of despair for this will come from time to time (pitty-party = chocolate 😉 ). But I can breath. I can lead a normal life. I can stop worrying about how long the next phase of easy breathing will be before I notice the hideous little symptoms returning, letting me know it is yet time for another trip to the hospital.
I think that realisation will take a while yet to sink in. Question remains: Do I consider myself cured? I do and I don’t. Yes, my illness phase is over. But, as this disease is such a rare occurrence and so under-researched, who knows what the long term prognosis is. But for now, I am grateful and relieved that my life is not dominated by my next visit to the operating theatre. Though I think I will miss the drugs 😉