27/04/2016

27-04-2016

 

 

I think that it is probably about time, to make a little entry into this ‘ere blog.

 

It has always been my intention to use this keyboard as my sounding board for when things get shitty on my journey battling this awful disease. It has been a very good tool for me to use when I’m down, real low.  It has managed to take the bad thoughts from my head and stop me from dwelling on them and this has been an excellent way for me to keep positive, even if the content of my entries, on some occasions, have sounded less than great.

 

This content is not going to be “less than great”.

 

  It had been a while since I was last down at the hospital, so yesterday, I had a couple of appointments down there, the first was with a magnetic resonance imaging suite (my last one of these was March the 1^st) and the second was with Emma, my consultant to discuss the results of the first appointment and what course my ground breaking, experimental treatment should take next.

 

  As she entered the consultation room she caught me in mid flow of one of my, oh too common, trachea induced coughing fits, as these can be so easily brought on, a change of temperature from room to room, a laugh that catches you off guard, crawling under your van to fit a set of fog lights or walking past a group of beautiful people that all choose their own “off the shelf” scents to adorn themselves with, are all ways to make me unable to speak and bring on quite uncomfortable coughing.  The only way I have found to get over this is to take the trachea all apart, give it all a clean and breathe slowly.

 

  So there I am with half disassembled plastic neck jewellery, red faced and teary eyes, standing over a sink with snot dribbling out of my neck all stringy, stretching from my doss-rag to the plug hole, I am most definitely not looking my best, but I was glad there was a sink in that room or it would have been a lot messier.  Still, Emma could see I was in control of the situation and she just about gave me enough time to finish my pipe cleaning before she tells me about the MRI results.

 

  “It looks like the tumour has not got any bigger since your last MRI. I’ve looked at your last 3 MRI’s this morning and from the end of December to the Beginning of March there was massive growth in the size of the tumour, but between March till today there is no sign of growth. I’m really happy about this. This is a good thing. I’ve had a fellow consultant look at the scans too and he agrees, the tumour has stopped growing.”

 

  She said all this with quite a large smile on her face and I could see she was genuinely happy about these results.

 

  I too am happy about this, I’m not out of the woods, but before I went to Poole on Tuesday I thought something had changed, I feel different, I have a bit more va-va-voom, I have been able to do slightly more physically demanding tasks, rather than just play with my Lego and I have been getting through a plate of food in 20mins and not the ¾ of an hour it was taking. This is all good things. Plus I have been able to reduce my daily morphine intake by about two thirds.

 

  So what does happen now?

 

  Well, also during this appointment, Emma wanted to look at ground zero with her own eyes (via the regular, smaller nose scope) to see how it was reacting to this chemical and my bodies own immune system now attacking it, as she could see on the scan there was a “large area” of necrosis in my tongue, this is dead tumour ( another good thing) and as there is no sign of my tongue about to start bleeding out, she has agreed to my request of having this trachea removed, whoop whoop. This will increase my quality of life as I will be able to get out and about ( once I am healed, as I do not want to get an infection there, that would be a right pain in the neck! ) and we can book our family holiday, oh yes, major memory making.

 

  As concerns continuing treatment, She will be putting in a request for more of the same drug from the Italians for me as there is still some parts of this tumour that could do with being highlighted to my immune system, so that it might attack it some more.

 

And who knows what that might mean.

 

There you have it, a little round up of how things are, so hurry up summer sunshine, I want to have a garden party or two.

 

This is me Steve Royal full of good things.

 

Have a week.