Well we had a VERY long day at the hospital monday, at first it felt incredibly dissapointing. I needed to have a blood transfusion (my first in months) because my haemoglobin was so low, all of my other blood counts were lower and I'd been taking hte GCSF injections so I was really hoping that my neutophils would be up above 1 and I'd be able to start getting out and doing more. Anyway it was a long day, talking to Matt the consultant cheered us up, he explained this is very common when taking the the anti-viral drugs and it shouldn't last all that long.
Still today I got a phone call telling me that I my CMV virus count they took is now 0, so I can stop taking the anti-viral drugs completely, coupled with the GCSF injections I'm taking my blood counts should start shooting up. I still have to have a couple of bags of blood thursday which is a pain (they're two hours a piece) but I have an appointment with the clinical psychologist at the same time so I'm looking forward to that.
Also I've started doing a lot more exercise, lot of sessions on the WiiFit. It really is killing me not having done exercise in so long, muscles don't know what to make of it having not done anything so strenous in such a long time. Still I know I'm going to have to push myself if I want to get my strength back, I've got an appointment at the Physio Hospital next thursday but really I'd like to start getting advice before that so hopefully I can see the Hospital's physio again in the next few days and explain the situation or find a private physio.
I just really want to be in a situation where I can go and play squash with my friends and do all the normal things I want to do it. Right now when you're struggling to climb stairs and keep up with the walking speed of your parents it can be pretty disheartening. To be honest I'd love to get to a stage where I can run a half-marathon but... one thing at a time :)
Tuesday, 25 August 2009
Thursday, 20 August 2009
Day +104: Living an hour at a time
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.
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.
Friday, 14 August 2009
Day +98: What a week
Well after my meeting with the Prof on wednesday there's certainly plenty of good news to report. Although he had very little time for me, the upshot of the meeting really was that all my bone marrow results are fine, my central line's getting taken out next tuesday since I haven't had any transfusions or anything for ages and all the results are looking great. Also, no more drinking boiled sterile water, which is weight off my mind and everybody else looking after me.
It looks like a lot of my pills are coming down or gone completely, I should be off the steroids completely come next monday, although I'm still not getting very much sleep and still with all the mood swings and muscle cramps. It seems like the last stages to coming off these steroids are going to be the most difficult. I'm sitting here now really, really trying hard to concentrate on writing this but my anxiety is going through the roof, it's a very odd feeling. To be fair I am on my way in to hospital in a little bit to have my Pentamadine gas which isn't a particularly pleasant experience, nor is going in to that day unit in general, still my sister'l be there and I've got my diazapam to use still.
So yeah, it's difficult to describe my feelings really. All my friends want to see me and contact me, and obviously I want to see them it's just when your mind feels so foggy and clouded I just can't seem to organise anything. Even just replying to text or facebook messages has me on edge half the time, it sounds ridiculous especially after I've had so much good medical news. I want to be able to just make everyone I know realise why it is I don't reply to messages or try and see them but its living one hour at a time almost, it's exhausting.
From the research I've done and my family have done it is all standard side-effects, I've just never known anything like that, I can't wait for it to be over.
It looks like a lot of my pills are coming down or gone completely, I should be off the steroids completely come next monday, although I'm still not getting very much sleep and still with all the mood swings and muscle cramps. It seems like the last stages to coming off these steroids are going to be the most difficult. I'm sitting here now really, really trying hard to concentrate on writing this but my anxiety is going through the roof, it's a very odd feeling. To be fair I am on my way in to hospital in a little bit to have my Pentamadine gas which isn't a particularly pleasant experience, nor is going in to that day unit in general, still my sister'l be there and I've got my diazapam to use still.
So yeah, it's difficult to describe my feelings really. All my friends want to see me and contact me, and obviously I want to see them it's just when your mind feels so foggy and clouded I just can't seem to organise anything. Even just replying to text or facebook messages has me on edge half the time, it sounds ridiculous especially after I've had so much good medical news. I want to be able to just make everyone I know realise why it is I don't reply to messages or try and see them but its living one hour at a time almost, it's exhausting.
From the research I've done and my family have done it is all standard side-effects, I've just never known anything like that, I can't wait for it to be over.
Wednesday, 5 August 2009
Day +90: Muscle cramps & steroids
Since my last blog I started doing very well, I saw my friends, had some really good days, was managing to sleep alright and really hadn'y been feeling anxious at all, just taking things in my stride and knowing that things were all going to get better once the steroids were gone. Plus I had all my plans to start getting my programming work back on track, start my disserttation research, etc. etc. and seeing my mates more.
My Steroids are being brought down 2.5MG at a time, I'm currently down to a 5MG dose every morning and thats all but it seems that the tapering down of them is almost as bad as taking them in the first place. It's midnight now and I'm sat here with terrible muscle cramps that just won't let me get to sleep, last night was the same but even worse, I was in agony. In terms of painkillers I've tried Co-codomol, codeine, paracetemol, deep heat and that doesn't really seem to scratch it. I've even just tried one of my diazapam, I don't know, I don't know if that was sensible but it's all I've got really.
I do have sleeping pills but it seems a waste to use one when I know I can't drop off when I'm in pain (it was last night). To make things worse I've developed sores and cold sores in my mouth which have been waking me up whenever the muscle cramps decide to subside. Still I have a course of pills for that so that should be cleared up in 5 days or so.
I've been researching the muscle cramps from the prednisone (or prednisolone) online and its very, very common which makes me feel a little better but it just seems theres nothing I can do about it. Theres no advice, the best I've got is eat advacado and banana's... great. Just when I start to get back to a good nights sleep I'm hit by this crap.
Pain's starting to subside now I've been sat up a while so I guess I'll try and get back to sleep, hopefully it'l keep off long enough for me to get a few hours at least.
My Steroids are being brought down 2.5MG at a time, I'm currently down to a 5MG dose every morning and thats all but it seems that the tapering down of them is almost as bad as taking them in the first place. It's midnight now and I'm sat here with terrible muscle cramps that just won't let me get to sleep, last night was the same but even worse, I was in agony. In terms of painkillers I've tried Co-codomol, codeine, paracetemol, deep heat and that doesn't really seem to scratch it. I've even just tried one of my diazapam, I don't know, I don't know if that was sensible but it's all I've got really.
I do have sleeping pills but it seems a waste to use one when I know I can't drop off when I'm in pain (it was last night). To make things worse I've developed sores and cold sores in my mouth which have been waking me up whenever the muscle cramps decide to subside. Still I have a course of pills for that so that should be cleared up in 5 days or so.
I've been researching the muscle cramps from the prednisone (or prednisolone) online and its very, very common which makes me feel a little better but it just seems theres nothing I can do about it. Theres no advice, the best I've got is eat advacado and banana's... great. Just when I start to get back to a good nights sleep I'm hit by this crap.
Pain's starting to subside now I've been sat up a while so I guess I'll try and get back to sleep, hopefully it'l keep off long enough for me to get a few hours at least.
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