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.
FormerMember
Hi you have been through so much I really feel for you - it has certainly been a long long slog. You will I am sure bounce back - just like your user name and regain your normality but I can understand how utterly frustrating for you it has been, waiting for bloods to recover, dealing with steroids and their side effects (I HATE them) and of course battling with this virus. I really wish I could say more to help - but I can only say I am listening and wishing you back to full strength and normality. I know you can do it!! Lots of love and sending some strength for the next weeks, Jools xxxxxxxxxxxxxx
sorry you're having such ahard time but you seem to have a pretty good understanding of what's going on yourself. Hope the psychologist helps you. If it helps any, I've had similar feelings about decision-making at times (coincided with drugs) and just didn't make any when I felt that way. We've kept life as simple as we can though - bottom line of keep on top of house, sort food out and take it from there. We've written a list of basic stuff to do and shared it out between the 4 of us. Most days there is business stuff to see to but we know that sometimes I 'can't be bothered' to think about that. I also found myself 'drifting off' from conversations which I've put down to effects of drugs, being 'out of practice' with conversations and even total lack of interest in what I see as the other person's boring, unimportant whinges (I don't <em>think</em> that's a bad thing?!?).
Like you say, you will get through this bit - sorry it's rough at the minute.
I'm still on steroids for rheumatoid arthritis, another smoking related thingy as well as the lung cancer, and the doc is gradually reducing them. I have noticed bouts of depression hitting me and have been told its probably down to the steroids. I dont know which is the worst, arthritis pain or depression, they are both shit, but at least I know why I get depressed. The conversation thing happens to me as well, people wittering on about shite, but I log on here to see what REAL people have to say and I then realise I am not [quite] mad, YET!! Keep having a read on the jokes pages, I always get a lift from that and Debs daily deliberations crease me up. She is one hell of a lady !!
Will, everyone is saying it - Hang on in there! You really have been through the mill, churned, tossed and turned, but you have made such progress from where you were .... As you say, for sure this is a set back, but not one you cannot take on the chin! As Jools says you will Bounce back, you really will. Based on what I have read over the last few months, I am sure that you are not used to having time on your hands, it is actually not an easy concept to manage if you have always been used to 'being on the go'. It is also fair to say that many people who have been in hospital for sustained periods of time can and do become, to varying degrees, 'institutionalised'. It can take time to get back to normality, whatever that is!
I hope your stay in hospital is as short as possible and that from here on in it is little steps forward each day. I am sure you will vist chatting to the psycologist helpful, it was a good move to make contact with her.
