I am feeling a bit overwhelmed. Well, not just a bit. Quite a lot actually. I am not sure if purely positively or purely negatively. Probably a good mix between the two. I am also feeling tired, drained. Like I have had enough.
I was able to meet a wonderful, strong woman today. A woman, who has been dealing with ISS for six years. She is currently in the middle of dealing with the procedure I will be facing at some point in the next few months. Thank you so much for allowing me to meet you, for picking your brain, asking about your experiences in all this. Thank you so much for your openness and honesty. It has helped.
Today has brought on an array of emotions. Naturally, because I was meeting a total stranger at a very vulnerable time. I felt nervous, as you do when meeting someone new. But also because I knew it would make me think about these pending medical issues more intensely again. More so than I would like? I don’t know, but most probably.
What I experienced wasn’t as unnerving as I was afraid it was going to be. From the actual procedure point, I think I am feeling a bit calmer, especially due to the openness during the conversation. At the same time though, I am scared. I have been through part of it. And it hasn’t worked. They say that with time, the mind starts to forget the ‘bad‘ and focuses its memories on the ‘good‘.
I have had one seriously horrifying experience with my last trachy: I was in Germany at the time and there we tend to have two-bed hospital rooms (very nice in terms of sleeping I have to say). It was the third morning after the cricoid plastic. I was standing at the wash basin, trying to make myself look halfway presentable when all of a sudden a bit of mucus blocked my trachy – which I could not dislodge (for those of you reading this who are a bit uncertain, with a trachy you cannot physically breath through your nose or mouth, the trachy is your only airway).
I was alone in the room at the time as my room mate, a lovely elderly lady who had had an emergency tonsilectomy was out and about on the ward. In panic for my life I was clinging to the basin unable to move an inch, the emergency cord one hand width out of my reach. When you are 24, which I was at the time, and in that kind of situation it’s kind of self-explanatory that you don’t stand there and think ‘well, ok, I have had a long and fulfilled life so going now isn’t quite so tragic‘. Thankfully, with vigorous coughing, and what seemed like an eternity later, the bit of mucus dislodged and I was able to clear my airway. I can recall that moment as vividly as if it were yesterday. And the very thought of having this damn tube placed which could bring a similar thing on again is….. I don’t even know where to begin to describe what emotions it brings on.
For so long (and to an extent even now, though today this was most definitely not the case), being in the same room with a person having a tracheostomy in place made my skin prickle, made the hair at the back of my neck stand. It made me feel panicky and physically sick (I’m sorry for my honesty here….. this is just how I personally experienced it). The thought of this part of the procedure makes me cry and scream inside. It makes me feel so helpless and small and alone.
But what alternative to I have? Well, I guess I could carry on as I have done, going to hospital every so often, having my trachea dilated, with the knowledge that at some point, whenever that may be, the chances of having to have a permanent trachy placed are pretty high because dilation won’t be possible anymore. Or, I can ‘bite the bullet’ and undergo the reconstruction with the hope (and confidence of the surgeon), that this problem will be sorted once and for all (at least with a 95% certainty).
Still, I feel numb. I feel scared. I feel helpless. I feel empty to an extent. And as I said, tired and drained, alone and so much more that I cannot begin to put into words…