Well its been a while since I have blogged and it is probably not good for my mental health (I still hear you all saying under a cough “he is mental at times” – cough “lacks mental capacity” – it is true – I still hear the voices!!)…..

Anyway back to why I am blogging. I have started to have a few questions on updates and realised I had not posted for a while (ohh what sort of family/friend/random am I !!!) 

My New Mate

I have made a new friend called NED and he is staying with us over Christmas and for a while, well as long as he wants.

So I hear the questions being asked – “Who is NED?” No it is not Ned Flanders from the Simpsons (“hiddly ho neighbour” would just give me the $#!ts everyday).

And “Why is NED staying with you?”  Is Ned a nurse, a physio, a carer?

“What does everyone else think?” Is the Mad Scientist ok with this Ned staying? What about the cheeky monkeys, how are they going with some random Ned dude in the house?

Timewarp

Well lets take a jump to the left and then a step to the ri-i-ight (ok I will stop with that song). Since I last wrote, I have had a Brain MRI, a PET/CT and a Chest CT. All of which is to see if the various surgeries, drugs, radiation and TKI’s have done their thing. Was any cancer viewable with modern technology?

Well – drum roll – toot to-toot to-toot (that was trumpets if you did not get it), the results are in and I have 

“No Evidence of Disease” 

So NED (No Evidence of Disease) is my new mate that is living with us. 
“Woot Woot” I hear you all go, PAR-TY ….. Ohh yeah I am up for that and so is NED. 

“So why no quick sign off? – hmmmm – something is not quite right here”……..I hear you all say (wow those voices are working well in my head today)

I am excited, happy, joyous and all the other adjectives that are positive. NED is a bit of a party animal which I reckon is great, but he has a few personality flaws.

NED Ghosts

So the first thing is that NED is “visiting” and I should make that clear. I have not found a single person in all my hunting of fellow ALKies that has had NED stay forever (or past a good number of years). NED has a habit of just leaving when you get used to him hanging around, he just ghosts you.

I am trying to be his best mate and make him stick around, but no one has been able to do it yet, some of us are comparing notes and trying real hard to make it work. 

NED likes Drugs

The other thing with NED is that for him to stay, I have to stay on the drugs, the TKI’s, so the nice side effects with them remain while NED stays.

I see NED as a party animal that wears me out each day; the hangover can be hard in the morning; but hey each day is still a party waiting to happen (with a little rest in the middle of the day, keeping me ticking along in a happy useful mode). 

End Notes

So if you see me and we do start chatting about NED we may look a bit weird to everyone else around us, as we talk about a non-tangible person 😉 who only hangs out if we party hard and while drugs are involved!!