Not quite firing on all cylinders

I am sorry to say that I am still feeling pretty ordinary. I am not sure exactly what it is, part nausea and part pain I guess, but just generally don't feel anywhere near my best. I expect that the dust hanging around today probably added to the problem making me cough which of course leads to the pain! Unfortunately, I had to go out too, (I had planned on staying indoors and not moving from my room), so there was no avoiding it.
It was quite funny actually, my appointment today was with the palliative care doctor. I had no idea I had an appointment and when the community nurse, Jenelle, got here she had to ring him to get different anti-nausea medication for me. When she spoke to him he said, "Oh, she is next on my list", and Jenelle said "Well she's sitting right here in front of me so I am guessing she won't be next up!". Woops!!
She quickly set up my pump and thankfully Jason was home today so he raced me straight up there. They waited for me to get there which I thought was nice but they didn't change any of my drugs, just added this anti-nausea one.
For some reason it can't go in the same line as the pump so they had to put in another sub-cut butterfly needle. Now I have one in either side of my tummy which means I am going to have to sleep on my back. Oh no.....how will I ever survive!
You may have noticed I am feeling a bit down about the whole thing today. I think I have had enough. Time to wake up from the nightmare and get on with life I think.........
I weighed myself on their scales at the clinic today too, I can't remember if I had already written on here just before they admitted me to hospital I was 75kg of which 13kg was fluid as my usual weight is 62kg. I weighed today at 65kg so all that excess fluid has just about gone which is great! I am guessing it also keeps fluid down around my organs so fingers crossed that the heart won't start getting fluid build up around it again.
Do you believe they still don't have the B-raf result. We ended up ringing yesterday because we couldn't wait until my appointment on Monday, but they still don't have it. That's been 4 weeks! I think Jason may actually go down and speak to the pathologists in Melbourne in person if we don't have an answer soon.
Of course, if we don't have an answer before Wednesday and my blood tests come back normal I will have cycle 2 of DTIC I would expect, which I don't really want either. Although my veins are finally starting to come back a bit I think! For someone who hates needles.....man I have them all the time!!
My biggest issue at the moment is Matt. If only there was an easy way to help our kids through this stuff.....
When I wake up in the mornings, my cough is at it's worst. It hacks for about 30 mins and sounds dreadful, kind of between choking and vomiting, (sorry for the graphics but I am trying to get you to see what Matty sees!). Yesterday morning, I had come down for brekky and was sitting at the bench next to the fish and in front of Matt's teddy bear. I started my coughing fit....Matt came over took his teddy and asked me to move away from the fish because if I coughed on them they would catch cancer and die.
Now while that hurt terribly for me, can you even begin to imagine what is going on in his head? How scared he must be? How he sees this situation? My poor baby boy.
Then add to that the fact he cries everytime we part because he thinks I am going back to hospital and he doesn't like that. It's really, really awful. I wish I could take it all away for him. A 5 year old shouldn't have to worry about awful stuff like that. His biggest worry should be whether Andy is going to try and play with his favourite toy!!
Anyway, subject change....it's my birthday tomorrow...38. My God, where does the time go! I am catching up with an old friend on Friday and I have been thinking about old times hanging out as teenagers. Life was so simple back then, I wish you had the wisdom as a teenager to appreciate it! Instead, you spend all your time though complaining about how tough you have it...funny isn't it.
I don't think there is anything else to report. Everything else is same old, same old. The trivia night is looking good, just a reminder to make sure you RSVP to Sharon with definite numbers as soon as you can if you are going.
Till next time xxxx

NEVER, NEVER, NEVER GIVE UP