Last two weeks haven’t been the best. Apart from being in a very clean 12ft x12ft sealed box with very little interactions from anyone who isn’t dressed like a mastermind serial killer in full PPE & no ambient sound at all from outside my room to cut down chances of cross infection.
I was a little caught in the chicken & egg trap. One test needed to be complete before they could rule out one thing and look for the next.
The staples in the back of my head delayed so much. I’d picked up an incredibly painful chest infection from my time not being isolated in the previous hospital, the previous week.
This took ten days of broad spectrum IV antibiotics to shift. If you have little immune system, you don’t get the response associated with infection, very little fever, no phlegm, mucus etc etc - because these are all the result of the bodies response to infection. What I did get was the sensation of being punched in the side for about a week constantly.
A typical day started at 5am with 3 or 4 attempts at taking blood to check infection markers - after a week of this - I asked to not be the crash test dummy anymore because I looked like I had a smack habit & it became a traumatic start to each day. They then conceded that some people can be a little ‘dry’ early morning. From then on they tested me everyday after 9 - with no issue.
It took them about four days to get to the wound on my head because I had just carried on bleeding for so long. I have to say, a sound you should never hear in life is a staple gun firing off at the back of your head.
Eventually I had full body CT scans to see how the disease was progressing throughout my body, the next day was a CT scan just of my head to look for damage from fall, brain bleed, sign of stroke(?) etc etc.
No obvious damage or progression of leukaemia. My lymph nodes on the surface begged to differ - imagine 2 or 3 tennis balls lodged in your armpits, a bag of marbles running along your jaw sort of gives you an idea.
So Friday a week ago I have 3 biopsies on armpit nodes ( not painful) but disgusting and bloody to see if leukaemia has transformed into a more aggressive lymphoma - tests results pending - a nice little light lunch of curry - I’m off leukaemia drugs which restrict my diet ( no curry no marmalade) until they know what made me fit and crack my head.
Half an hour later - lumbar puncture- which is extremely uncomfortable & disgusting.
I now know I have no brain or spinal column disease, cancer, bleed, damage, tumour etc etc.
I hadn’t realised that if my leukaemia had infiltrated my brain or spinal column, that this was really really not good, so their first observation of finding a couple of rogue cells in my spinal column fluid was deflating. It was then decided that this was a contamination from blood on entry of needle - because the other 3 samples had nothing. Staples out in next morning & MRI scan to follow, came back absolutely clear.
So now we have to see neurological specialist - they suspect that I am reactive to some families of antivirals. I was on one in ICU that caused me to vomit like a scene from the Exorcist, fit & get locked in for periods of time.
An antiviral I took at Christmas had a similar build up effect - so I asked to come off it. They suspect the medication has left me with a predisposition to a mild epilepsy. Tomorrow I find out treatment plan for old or ‘new’ disease.
So that’s me 😂