Well unfortunately since my last blog things haven't worked out quite as well as I'd hoped. My line removal never happened due to my blood counts taking a turn for the worst, needless to say I was dissapointed. The main reason for this I'm told is a combination of being on the steroids (which I am now off completely, which is some good news) and the virus that I've picked up. It's the Epstein-Barr virus which, from what I understand is very common and most people in their lives at least carry it at some point, naturally they have to keep a close eye on it in me as with my immune system still suppressed it can lead to glandular fever which really isn't something I want to be dealing with at this stage. It was pretty upsetting to see my blood counts take such a dive, plus not to have my line out but with the steroids stopped now that should all start to come up and within a few weeks hopefully be back on track. Besides I'm headed in to hospital in about two hours, so who knows I may find that my counts are way up, here's hoping.
So, that leads me to coming off steroids. In fairness the last few days have been very good, I've had a lot more sleep, I've felt a lot calmer and been using a lot less of the diazapam (mainly just to help me sleep through the muscle cramps at night) but still their are moments of depression, mainly early in the morning or late at night that I just can't even start to describe. I've booked an appointment with the hospital psychologist so I'm looking forward to talking to her about some things and to be fair I know it's mainly just a combination of the steroids coming out of me and a lack of real sleep and that's what I've got to keep reminding myself.
The thing that worries me most is still my mind, again I know its sleep and steroids and maybe slightly some risidual effects from the radiotherapy, but struggling to keep up with the most simple of conversations and trying and add to it just makes me feel like a total moron, not to mention trying to make decisions for myself. Yesterday I was on my own for four hours or so and I was just back and forth doing the most inane things like I needed somebody to tell me what I should be doing, which is ridiculous because theres so much I could be doing, just whenever I try and do some of the more productive ones I either get confused or side-tracked and end up upsetting myself.
When I think of all the crap I've been through, all the chemo drugs, sickness, radiotherapy, tubes down my nose to feed me and being in isolation for weeks I can still honestly say that this stage is the most difficult, there's just no guidance for it and now I'm really a low priority with the hospital all the emphasis seems to be on you to recover and lead half the treatment yourself which, when your mind feels like jelly is pretty difficult, I'm lucky I have my family and my girlfriend to make sense of it.
I'm starting to babble now I can see that. Again, I know this can't last much longer, it's just these steroids and now I'm off them things are already getting better, I just really needed to get these things out and write them somewhere.
Time to get ready to go in to hospital.
