My journey to new lungs and new life

Follow my ongoing journey with new lungs and a new life

Monday, 12 March 2012

How Embarrassment

I’ve just re-read my last post and I am so embarrassed at how “Poor me” it sounded; I must have come across as a spoiled twat to those whom live with chronic pain and discomfort every day. That wasn’t my intention, to sound like a spoiled twat; I was just trying to express my experience of cf, which is the whole point of my blog J

Ok now, so back to me…………lol. A beloved aunt of mine passed away of lung cancer this week and it has turned my mind back to the whole “death-dying-I’m dying” thing. Which is never too far from my mind anyway to be honest. I was quite scared of dying until I had an incredible conversation with a cf physiotherapist at the hospital last month when I was an inpatient. I asked her what it is like to die of cf and she told me that there are two very different scenarios. Scenario one is when there is still hope for a transplant, you’re just on your last legs waiting for one. This is the harrowing scenario as the person is usually an inpatient and they can’t be given too much pain medication or sedation because the transplant team needs them to be conscious and still aware for if the lungs come in. That is apparently quite distressing because you are quite literally on deaths door and each breath is agony and you have to stay like that just in case lungs come in. The second scenario is when a transplant is not an option; in that case you have to decide if you would like to pass away in hospital, at home or in a hospice. This is apparently very peaceful as you are given all the lovely pain medication and sedation that you need and you just eventually drift off, surrounded by family and friends if you wish. Hearing these two scenarios gave me a real sense of peace, knowing that it doesn’t necessarily have to be traumatic and horrible if you chose for it not to be.
My choice is to pass away at home with my dog Teddy by my side. Being near Teddy just makes me feel good; he has that affect on me. I have told all of my family and Brad of course and they are supportive of my wishes. The main reason that I don’t want to die in a hospital is that I know it is usually a drawn out process over a number of weeks if not months and I don’t want my family to have to stress about driving to the hospital and paying for parking while they visit me. The cost of parking at the Prince Charles is disgraceful and even now because I am in hospital so often I feel terribly guilty at the cost of coming up to visit me. I also want to live my last days at home because I want my friends and family to know that they can come and see me whenever they want to, day or night, and not be confined by visiting hours. My aunt passed away in a palliative care unit and our family were treated terribly; they acted like we were a nuisance and were extremely rude to most of us. My aunt told me that they were unpleasant to her when she was by herself as well.

So those are my wishes and now the whole world knows them! At home with Teddy next to me………….hmmm, that means I have to actually train Teddy to do what he’s told, not an easy task, its going to be interesting!
Love
K

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