Actually its fairly good news. Since getting out of Kings a couple of weeks back I've avoided any further infections and am starting to get some stamina back and also some strength in my legs. I can get up all the stairs in our house now without using the bannister rails to pull myself up and am walking our dog Wellie for between 20 to 35 minutes per day - I'm not a big fan of hills just yet but that will come. CMV is back under control and so I'm off the Valganciclovir which should help get my blood levels off the special bus.
Appetite is good, here are my two breakfasts;
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| Monday to Sunday pills and lucky dip box for slow days |
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| Nom - that is all |
I did have a moment of laugh out loud self realisation the other morning when I tried to start climbing the stairs by pushing off with my back leg to spring up and land on the second stair, only to find that my ham strings are so frigging atrophied that my body went for it but my legs stayed where they were - so it looked like I was doing that awkward hand on hips Status Quo dance so beloved of denim waistcoat people in the seventies. Really quite bizarre - my mind was convinced that I would hop effortlessly up two stairs - but my legs were like 'Don't be foolhardy man! This is just pure insanity!'. I have to admit to feeling a little let down by the lack of moral fibre shown by my calves and thighs - it's not as though I was asking them to go fucking base jumping or anything...
Eyes and mouth are a bit problematic with GVHD (Graft Versus Host Disease), I'm still doing steroid and anaesthetic mouthwashes 3 or 4 times a day and using lubricating eye-drops for little things like, you know blinking and shit. Of the two issues I think its my eyes that are of greater personal concern. I had a laser contour scan done at Kings College last week and was relieved to be advised that the wobbly line issue that I have with my left eye is down to a build up of fluid at the rear of the eye which has thrown my focus out very slightly. The result is that if I look at something using just my left eye all straight or parallel lines have rather trippy wobbly edges. When it first happened I thought maybe it was flashback time from all the Pink Panthers and Microdot acid we used to take in the eighties, but have since been advised that it's a side effect of the steroid predisone and will fade as my dosage is titrated down. I also did another lung function test and came through that OK which was nice - considering the state I was in when admitted.
Despite being advised (and having counselled others) not to use the internet for medical research, I have been looking at GVHD pages on facebook and there are some horror stories out there, mainly from the US, where people have suffered ocular GVHD for decades resulting in ulcers on the eyeballs and permanent eyesight damage. I know because this film is all about me that this obviously isn't going to happen to the main character - but then again male pattern baldness wasn't on the cards as far as I was concerned either! My reading has thrown up a couple of useful tips though, one is that fish oil supplements are useful to assist in the production of tears to keep the eyes moist. The second is that in extremis if I can't start making tears again, there is a procedure available to cauterize the upper and lower tear ducts to divert the flow of mucus from the nasal passages to the tear ducts thus increasing lubrication to the eyes. I believe this is where the medical term 'Eye Bogey' originates.
There's a rather weird twist to the fact that when I was on the full blown steroid dosage of 60mg per day a couple of months ago, I was a very edgy weepy mess who could break into tears if half my chocolate digestive dunker fell in my tea but now you could nail one of my hands to a hot stove and I couldn't raise a single tear - although I'd probably ask you if the business with the nailing was strictly necessary.
Dosage of pred is down to 2.5mg every other day - I am feeling a little more sensitivity and pain from my mouth ulcers but its tolerable and worth it if I can start to get rid of my big fat pumpkin face and neck hump - both courtesy of steroid useage. On the subject, we had a barbecue at our house at the weekend and a bunch of my best mates from years back came over with their partners and kids. It was outstanding to see them all together again and over way too soon.
During the course of the afternoon my current resemblance to a character from the cartoon show Family Guy was raised - I naturally assumed it would be Quagmire due to his big fat head and jowly appearance (rather than him being sexually deranged) but the jury was out on him or baby Stewie - so heads you win tails I lose really. The closest I can put it is to imagine Marlon Brando and not in his prime, I'm talking about the doughy faced 'Apocalypse Now' Marlon Brando - the guy must have been packing steroids for his features to have been that distorted. Bloody hell its 04:45 now - so time to try and grab an hour or so before the school run.
I will leave you however with the latest gem from our house homunculus Milo (aged 4 and a half).
Sitting out in the sun in the garden with him the other day;
He says 'Daddy what is the name of the insect that begins with a 'G' and lives in the garden in the trees and likes to eat wood?'
Me: (OK I can get this) 'Erm Gnat?'
Him: No
Me: 'Grasshopper?'
Him: 'No'
Cue another 5-10 minutes of thoughtful silences and increasingly desperate guessing on my part.
Me: 'Grub?' 'Gadfly?' - no and no
Me: 'OK I give up - what is it then?'
Him: 'It's ENVELOPE silly'
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