Friday, 10 January 2014

Way forward

Last night I could barely keep my eyes open, not surprised really with all the additional morphine inside of me, plus the fact that my MST is now 230 am and pm.  Because I was still tight I also took my tiazapam early as Gary wanted to be on bed no later than 10.  

I actually slept on my right side, facing Gary in bed but also my good lung (if I dare call it that now) was down.  I woke to find myself half on my side and half on my back.  The bile moved along with the tumour which caused pain, we went to the loo, no lights on.  Came back to bed but that was that, I was unable to get back down.  We put another pillow behind me and I sat upright in bed, I tried to get back to sleep but I was uncomfortable, especially my bum.  Gary was so tired but in the end I had to get him up, if I was able I would probably just come downstairs and sit but I can't.  He got me settled on the sofa then went into the black and white room to sleep.  

It's an awful time really, all I want is to be curled up in bed sleeping than sitting on the sofa.  He woke up again around 8.30 feeling much better for an additional hour, but as I said we went to bed early and managed an extra hour too.

The morning just flew after that, Chris arrived and gave my feet a good massage then it was getting ready for hospital.  Both of us anxious on the journey up, the what it's etc.  we didn't have to wait long before Dr H called us.  I had emailed the doc on Monday explaining I was getting better off the chemo, which I think helped.  

He had arranged for me to see the Radiologist, apparently at the MDT meeting I was the main topic.  My scns have been poured over, with one doctor surprised I was still alive.  There is no evidence of the chemo working on anything significant.  The majority of the meso is slow growing, which is something going for me.  Dr H explained that I have pretty much steered my own treatment path with him helping me long.  Again he said we will explore all avenues because he isn't giving up either, I have got this far and had to fight tooth and nail to get here.  He told me he will refer me to anyone he thinks may help.

While I went for bloods to check the potassium Gary was told that if I had received another dose of chemo he doubted I would have got over it, lights out!

Dr A arrived and asked me to point and describe the pain.  There are various tumours around this area and he wants to ensure he gets the right one.  It isn't the same as drain holes being zapped, this is going deep inside my body.  I will need a quick CT scan so they can plan the lines with me guiding where the pain in my centre chest starts.  We voted on 1 long blast as this gives us the opportunity for another blast in the future.

I will contact Dr H's secretary when I feel stronger to arrange an appointment and discuss our opinions.  I know that my body needs a good rest, also it doesn't tolerate drugs very well, in fact not at all.

The phone has just rang, Dr H has just told me that the potassium is back up to 6.8,  not good.  More bloods required on Monday, if it reaches 7 I will be admitted into Newcastle Freeman, not somewhere I want to go.

So as early evening turns into night I am still quite drugged up, wish it was different as I hate feeling like this.  More so the thought of not sleeping through is heavy on my mind.

I will close the posting here as my eyes are closing.

1 comment:

Amanda said...

Good luck with the potassium levels, funny old thing chemo, might be meso's enemy but it isn't our friend either - I think like you Ray's body doesn't work well with drugs.
Here's to summer