This is my general response to the various ways of asking how I am. And it's true. I'm feeling surprisingly well. However, I am suffering from the following ailments:
"Brain Rattle" - this feels like a dehydration headache, and most probably is as I am so thirsty all the time, but it occurs when I move my head at any speed other than quite slow. It feels as if my brain is loose inside my head and after the 'violent' movement the brain impacts on the inside of my skull and leaves me in pain for a while.
"Swollen Neck" - Ever since I got out of hospital, and some of the time I was in, the sides of my tongue hurt, along with the areas on my neck to the sides of my windpipe. It feels like I have a throat infection and feels uncomfortable when I swallow.
"Pins and Needles" - In my face. Particularly on a morning when I'm dehydrated my tongue, lips and nose feel all tingly and require various strange looking face exercises to get rid of. A big glass of water also helps.
"Seize Ups" - Especially when I'm tired on an evening and I've been an enjoying a TV show or film I attempt to get up and realise that I am actually stuck in the seated position. It takes an enormous amount of effort to get going again.
"Fire in the tendons" - Closely related to seize ups, and often on a morning through my armpits my shoulders seize up and as I try and move them it sends shooting pains along my tendons. Legs as well as arms.
"Sneeze ups" - a sneeze causes a sever case of 'brain rattle' along with belly pain. Imagine going to the gym and spending all your time doing sit ups to the point where your stomach aches so much you can hardly move due tot he exercise you exerted it to. Now sneeze. I used to full blown HAAAAAAAAAAR-CHOOOOOOOoooooooo... sneezes. Now I do little "choo" sneezes like a little cat to reduce the pain.
"low bandwidth" - this is in the veins of my hands and feet. The circulation in these parts is pathetic and means I am constantly have cold hands and feet. I am alleviating this with home made hand and foot massages. Those wooden rolly things finally come in handy.
"bogeyman hands" - weird spots that appear on my hands. They start of painful, and soon turn into painless red spots that look extremely unsightly. I have written about them before. They dissapear after a few weeks when they grow out and I think 'phwew'. And then I wake up one morning with another set. I have mentioned them to the hospital, had various doctors take a look. "I've not seen this before, lets see how it is next week...case dismissed!" It is not documented as a new side effect.
I think that's about it. Lets not forget 'the fear' though. On Wednesday I got a call from the lymphoma specialist nurse. "Now there's nothing to worry about..." I immediately start worrying. "But we've been having a look at your recent blood tests and it appears that your creatinine levels are slowly rising." "Do you remember last Christmas when you were admitted to hospital with failing kidneys?" - Erm, YES. I felt like I was dying...and, erm, was. "We'd like you to come for a blood test to check that they haven't risen any more. But don't worry, it's probably nothing."
Unsurprisingly I did worry. I worried a lot. In the pit of my stomach I again felt that knot of fear that tends to be there whenever anything cancer related is spoken of. First thing the next morning I went for the blood test. My arms must have been appreciating this break as it was easy to get some blood out. In the afternoon I got a call. "Your levels are fine. The Creatinine has dropped again". Phwew says I.
So "yeah, not too bad, a bit better everyday actually..." is true but has an asterisk attached with the ailments listed above.
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