Tuesday, 22 November 2011

It's still there.....

Enough said really.  The lump is still there.  I have poked it, prodded it, even attempted to stick sterile needles into it.  This is driving me crazy, I just want to know what it is; do I or do I not have Cancer? 

If it were to be the big C, then I could cope with that.  It;s one of those things that I could set my mind to fight as if it were a separate physicalk opponent.  I picture myself as one of the knights of olden days, and the tumours would be my sworn enemy, with whom I must fight to the death....  But I clearly have too much time to think.

Regardless of all the traumatic events going on around me, I wanted to talk to you today about the wholke routine of looking after yourself when you have TS. This routine will vary from person to person, depending on things like whether or not you have a trach or a T tube, a stent or a permanent stome, or if you are going au naturel.

My routine at the moment begins with a whole lot of medication.  I take five different painkillers, four to five times a day.  These are to stop me going crazy from the pain.  I take lithium carbonate one or two times a day.  Sometimes never, but that's a whole other story.  I take carbocisteine, to loosen up the secretions in my aireway, and to thin them down and make it possible for me to cough them out, and harder for them to stick lioke glue to my stent and block it.  This drug is my wonder drug, and my life before it was becoming very very difficult.  During the summer, I woiuld be admitted to hospital every week with obstructions and chest infections.  The final part of my routine is to nebulise.  I do this a minimum of four times a day, and more often if required.  The nebulisers keep me well by keeping my airway moist, and by keeping the secretions in my airway loose.  My cough is not powerful enopugh to clear my airway, so most of these drugs are prescribed to help me with that.  Finally, I take a long term antibiotic, to help stop my poor clogged up lungs from becoming damaged from infection.

I do all of this every single day,  There are days when I feel mentally as if I just cannot do it any morem but I remember well what it is like to not be able to breathe at all, and it is because of that that I never miss a treatment.

You have to find a way to make it work for you.  I have managed to go on holiday by virtue of good planning.  I have however missed out on several nights out because my airway will not clear enough for me to come off the nebuliser.

Being tired is not a reason to skip your treatment regime.  Doing so will make you ill.  Skipping nebulisers in particular will clog up your small airways and make you almost guaranteed to get an infection.  You have to take responsibility for your own health and your own health care to a certain extent.  You can do it!!

Again, being fed up or bored is not a reason to skip your treatment regime.  Getting arrested is still not a reason; you have to tell them you are serioously unwell and need treatment, and they must comply, 

You get the picture; skipping treatment will lead to obstructions and infections, neither of which are nice.  So on those days when you are exhausted and you just want to sleep, put the nebuliser next to your bedm hook yourself up. and you are free to doze.  That's how I manage it.

It doesn't guarantee you good health, but not doing it almost certainly guarantees you bad health.  I've been there, and I'm certain many of you guys have too.  I hope we never get ill like that again.

Take care, and good breathing to all of you :o)

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