Thursday, 30 October 2008
Sunday, 26 October 2008
So, we're sat at home yesterday. I'm in bed, just getting myself ready to shift my ass and go downstairs. My wife wasn't feeling very well and was sat on the bed with my sister.
The mood and message seems to change each time I see my consultant. Once again the mood is positive and the message is that the stem cell transplant option has not gone away. If this chemo regime can get a reduction in the nasty stink beast (my affectionate name for it) then they will jump into high strength chemo, utilising these drugs that have worked. Sounds like a plan. Also, this chemo is given as an outpatient, only takes about an hour to do and also is meant to be easier to tolerate. So far, sounds a winner!
Monday, 20 October 2008
I had the heavily awaited scan today. I got to the place, was given a big old nasty drink to drink and sat waiting a bit. The waiting room was pretty full and they were an amusing chatty bunch (total surprise, but a nice one!). So the wait was pretty short. They all got called and I was left with a very fat man, a man in a wheelchair and a couple of middle years, where the wife was frequently belching and issuing orders to her husband in her Scottish drawl. Amused me.
Last week on Monday evening, I got a call from Hammersmith hospital saying they had a slot free on the magical mechanical stem cell machine and could I get there for 9.00am Tuesday. I checked with Ma-in-law who would be driving me and she said yes, but we'd have to leave at 7 (2 hours, not bad for a 14 mile journey. We love you traffic).
Well, it's been a good few days since I last posted, but I have a fair excuse (well, I think it's fair anyways). I have basically been feeling like utter crap! Since the Saturday before last Saturday, I was presented by the health fairy with a constant banging headache, that wouldn't shift with pain killers.
Friday, 10 October 2008
I'm out and discharged from hospital. I feel really tired and lethargic and can hardly walk due to my wasted leg muscles. I walk like a badly coordinated 96 year old. That's not the worst bit, getting up to standing is a swine. Don't even ask about the worry I had when I sat on the toilet (yes, I thought I was stuck and was going to need help to get up. I just managed it though. Not fun). As soon as I was released I tried to start getting some walking done and to go up the stairs a few times (that's a killer). Next morning the few scrawny muscles I did have were throbbing and I could hardly move my legs at all. Standing wasn't only difficult it was bloody painful too. So, as good as high dose steroids are for somethings, they are bastards when it comes to scoffing muscle tissue. I now officially have chicken legs (or chicken bone legs to be more precise!)
Tuesday, 7 October 2008
Grrr! I'm not patient any more (although I am a patient, boom boom, puntastico!). The doc has been to see me and checked everything off the list: no puking, no fever, temperature under 38 for 24 hours, looking well, not dizzy, weight ok, etc, so-on-and-so-forth.
Monday, 6 October 2008
So they told me when my last bit of treatment was done, I'd pretty much be able to go home. I was an excited kitten. Sleeping in ones own bed and all that. Well, the last slow bag of fluid crawled into me and I had a good nights sleep, all ready to be up and out the next morning but, shock horror, I had changed...
Saturday, 4 October 2008
Many thanks to all the well wishers who have sent me messages. I love all the comments I get, unless they are hideous death threats due to my writings about the prophet (not done any, so should be okay there, unless the Johovas Witnesses read my previous post and get militant).
Well, chemo has slowly dragged on. It hasn't made me feel bad particularly. I've been tired and not wanted to leap tall buildings in a single bound but the previous CHOP chemo made me feel worse. The rub here is that you are wired up 24/7. There are 4 lots of a drug called Cisplatin that you get for 96 hours, accompanied by loads of fluids (as it is a bit of a nasty sucker to your insides if let loose on its own). Now, the annoying thing about constantly getting fluids fed in, as I've gone on about before is that they start to bloat you out unless you can get rid of them. They give you some drugs to help get rid of them, but it's an ongoing drudge. Anyway, the 96 hours is getting near to an end and my grumpy mood (obviously noticeable as my wife has bought me a Mr. Grumpy t-shirt. Thanks love). Also, both a plus and a minus are the large steroid doses used on this chemo. Plus side, I've always responded well, so yay there. Downside, if they are given late they can stop you sleeping. Mine were given late, as the infusions were going on so long (on and on and on...! You can tell I'm not the most patient person in the world). So, first night, no sleep, just mad thoughts that wouldn't go away. You think of one thing and go off on a tangent and then another and then another, until you pull back and think "I WANT TO GO TO SLEEP!" and then a thought about sleep, e.g. a film that had sleep in the title comes to mind and away you go again. Thankfully, I seem to have adapted and was able to sleep okay last could of nights, apart from the regular wakings up to pee in bottles (all urine out has to be measured and compared to fluid in, to make sure it's not welcome to bloats-ville).