A couple of days ago my ear went deaf in the shower and today it popped back to almost, but not quite, normal. I suppose it is as you move your head around or stretch your head back it loosens up the tubes or something (obviously a technical term) and whilst I still have a bit of tinnitus it is much further away in the background. It is surprising how quickly you grow used to the noise in your ears, it was just downright annoying to start with now I can block most of it out.
I hope that it continues so that I am a bit more "with it" than I have been. I've been terribly slow - things have taken an age to get done and my brain isn't as quick as it used to be and I guess all the usual symptoms you get when trying to work when you have a cold or are ill.
So, the weekend beckons and work next week - that will be a shock to the system as I haven't been since the middle of December. People will wonder who I am.
I am looking forward to tomorrow with a Burns night supper and real Haggis and Highland Beef, a Piper and all the bits. It was great last year excepting that I had to drive myself and so was unable to join in the revelry. This year, I have a lift there and back and so I will be able to enjoy a few drams. It will be a long day - we are leaving here at 12:30 and probably wont be back until the wee hours of the morning.
So, things looking a bit better this morning and I hope that it will continue.
Friday, February 06, 2009
Thursday, February 05, 2009
Getting back to work
I have made a commitment to go in on Monday as I have an important meeting that day and later in the week and need to prepare for them.
I actually feel a lot worse tonight than I have for a little while and young A has had to go to the GPs today for a very bad ear ache and is on the same sort of antibiotics I was on. I can only assume it is the same thing. The Doctor spoke to my wife and reckoned if I am not hearing properly in a couple of weeks time to come back and see him. Perhaps I have done some long term damage to my ear - although I have had almost full hearing back with it a couple of times it just keeps clicking in and out.
I hope that this clears up in time to go back though as it is just dragging on and on.
Keep taking the tablets :-)
I actually feel a lot worse tonight than I have for a little while and young A has had to go to the GPs today for a very bad ear ache and is on the same sort of antibiotics I was on. I can only assume it is the same thing. The Doctor spoke to my wife and reckoned if I am not hearing properly in a couple of weeks time to come back and see him. Perhaps I have done some long term damage to my ear - although I have had almost full hearing back with it a couple of times it just keeps clicking in and out.
I hope that this clears up in time to go back though as it is just dragging on and on.
Keep taking the tablets :-)
Might be something else happening now then
I got a letter confirming my mild atypia today - I believe that means the same thing as atypical cells :-)
As it was the first post we have had for 4 days I checked with the Hospital to make sure I wasn't due in on Monday. apparently not. They have been checking to see whether I had undertaken a full one-years worth of maintenance - which I have of course. Based on that, they will be making up their minds what to do with me on Monday.
It is therefore possible that the treatment plan will change given that it is to really rid me of the atypia. I now have to wait and see what they plan to do with me. from what I gathered last time it isn't the maintenance I had before which was 3 BCGs one a week , wait 9 weeks, 3 more one a week, wait 12 weeks, rigid cystoscopy, results back in 2 weeks and next course sorted from there. It sounded like (poor deaf person I am at the moment) that it would be 3 BCG at 3 monthly intervals with a rigid scope at 6 and 12 months.
Whatever it is, it means I don't have to worry about being off work next week on Monday and Tuesday. The week following is a different thing of course.
I don't think it is anything to concern myself about other than what regime I get put on and that it "does what it says on the tin" and gets me completely clean and clear. Whilst this doesn't sound like a big deal having mild atypia, it IS a big deal to me and it needs to get sorted. Hard to bring my mind around to the positives when I know I have to go through some more pretty serious treatments before we can be happy that it isn't the beginning of a recurrence.
Indeed, the fear is that this mild atypia is indeed the commencement of a recurrence although no one has said that or even intimated that to me. It sounds like a normal thing. Let's hope so.
As it was the first post we have had for 4 days I checked with the Hospital to make sure I wasn't due in on Monday. apparently not. They have been checking to see whether I had undertaken a full one-years worth of maintenance - which I have of course. Based on that, they will be making up their minds what to do with me on Monday.
It is therefore possible that the treatment plan will change given that it is to really rid me of the atypia. I now have to wait and see what they plan to do with me. from what I gathered last time it isn't the maintenance I had before which was 3 BCGs one a week , wait 9 weeks, 3 more one a week, wait 12 weeks, rigid cystoscopy, results back in 2 weeks and next course sorted from there. It sounded like (poor deaf person I am at the moment) that it would be 3 BCG at 3 monthly intervals with a rigid scope at 6 and 12 months.
Whatever it is, it means I don't have to worry about being off work next week on Monday and Tuesday. The week following is a different thing of course.
I don't think it is anything to concern myself about other than what regime I get put on and that it "does what it says on the tin" and gets me completely clean and clear. Whilst this doesn't sound like a big deal having mild atypia, it IS a big deal to me and it needs to get sorted. Hard to bring my mind around to the positives when I know I have to go through some more pretty serious treatments before we can be happy that it isn't the beginning of a recurrence.
Indeed, the fear is that this mild atypia is indeed the commencement of a recurrence although no one has said that or even intimated that to me. It sounds like a normal thing. Let's hope so.
How are you getting on now?
Met a lot of friends last night and each ask how I'm getting along and I noticed that the ones that "would" be interested I could tell them a bit more about what was going on and the other ones I could just tell them that things were OK, I was cancer free and that they were keeping me on medication and observation (that's almost true and enough information to be getting on with).
Steve Kelley puts a very good point here that there tends to be two reactions to people who have cancer and - uncomfortable as this is - they are:
1) You are going to die. Just a matter of how soon and how awful the process.OR
2) It's been removed and won't come back and really the whole thing is over and can be forgotten about.
These would be reactions from people who have never had cancer or don't understand some of the ongoing issues with it.
It is a sort of binary thing, you're ill or you're not. Of course, if this blog and Steve's blog say nothing else it is that the disease itself has far reaching affects on your life and with Bladder Cancer, which is treatable it can come back, it is like that and the biggest threat we live with is every time we go to have an operation or get checked is the worry that it is back. Again, you can treat that, although the thought of having a neobladder or a bag to go pee in for the rest of my life isn't high up on my list of things to do before I die.
It isn't, cut, cut, snip, snip all over and done with, it isn't a cold and that was what amused me last night. Very few people are as clued up about cancer as those who actually have it. I was surprised to find people who have it, although I don't talk to many of them, don't really have a clue about their Bladder Cancer, a lot of people take it all in their stride and get told that they are having this or that and go off and have the treatment and yet probably haven't read up about how it works, what it does, ways to alleviate side effects and so on. I wanted to know everything about it.
So back to the point - 90% of the people at the meeting last night only really wanted to hear that I was OK, over the worst, on the mend, doing well. 10% were interested in the ongoing but, frankly, there aren't many who would be interested in the detail - who would?
If I was to be really cruel - I can recount the stories of the Flexi or the BCG treatments - only a very few of my friends know about the grizzly bits. But it is fun occasionally to drop in a bit about having the BCG and how they instill it with a catheter with no local anaesthetic. You can see the guys curling up, going to grab their groins and going "urggghh" and pulling faces. I do stop it there though as if I were there I couldn't listen to what was going on. Amazing what you put up with and amazing what people don't know.
Steve Kelley puts a very good point here that there tends to be two reactions to people who have cancer and - uncomfortable as this is - they are:
1) You are going to die. Just a matter of how soon and how awful the process.OR
2) It's been removed and won't come back and really the whole thing is over and can be forgotten about.
These would be reactions from people who have never had cancer or don't understand some of the ongoing issues with it.
It is a sort of binary thing, you're ill or you're not. Of course, if this blog and Steve's blog say nothing else it is that the disease itself has far reaching affects on your life and with Bladder Cancer, which is treatable it can come back, it is like that and the biggest threat we live with is every time we go to have an operation or get checked is the worry that it is back. Again, you can treat that, although the thought of having a neobladder or a bag to go pee in for the rest of my life isn't high up on my list of things to do before I die.
It isn't, cut, cut, snip, snip all over and done with, it isn't a cold and that was what amused me last night. Very few people are as clued up about cancer as those who actually have it. I was surprised to find people who have it, although I don't talk to many of them, don't really have a clue about their Bladder Cancer, a lot of people take it all in their stride and get told that they are having this or that and go off and have the treatment and yet probably haven't read up about how it works, what it does, ways to alleviate side effects and so on. I wanted to know everything about it.
So back to the point - 90% of the people at the meeting last night only really wanted to hear that I was OK, over the worst, on the mend, doing well. 10% were interested in the ongoing but, frankly, there aren't many who would be interested in the detail - who would?
If I was to be really cruel - I can recount the stories of the Flexi or the BCG treatments - only a very few of my friends know about the grizzly bits. But it is fun occasionally to drop in a bit about having the BCG and how they instill it with a catheter with no local anaesthetic. You can see the guys curling up, going to grab their groins and going "urggghh" and pulling faces. I do stop it there though as if I were there I couldn't listen to what was going on. Amazing what you put up with and amazing what people don't know.
Wednesday, February 04, 2009
I shouldn't be fed up
The last post says it all some poor kid under 30 is in deep problems with cancer and there is me whinging on about my hearing and how I'm not at work and how rubbish I feel. I always did say I felt a bit of a fraud just having Bladder Cancer. I still feel that a bit - maybe it is the strange way that I deal with it? How did all those poor kids go "over the top" in WW1? they must have known what was out there but they still did it. Again, that's a strange way of dealing with it too.
Not sure that is relevant but it came into my head after watching "My Son Jack" on DVD - one I got for Christmas. Lots of people worse off than me but I still complain and as a few blogs before this probably note - it is after all - all about ME and perhaps I ought to realise that.
I was out tonight and again, was pretty deaf and it showed and I was really struggling to get things sorted out and then I got a lift near to my house and the walk across the main road and the snow was a whole new adventure! I think that whilst I feel guilty not to go into work, frankly I'd be surprised if I can actually get more than a few hundred yards without losing my footing or losing my balance due to my ears and the affect this is having on me.
Part of me says go to work and the other part is saying - are you an idiot? - How well do you think you actually are and what on earth are you going to achieve by doing this? I'm sorely tempted to go in on Friday if things are OK just to say hello. I may even just go in for a few hours if I can, show my ugly face and retreat. Frankly it is absolutely treacherous outside and they don't pay me enough and it isn't important enough. The snow will have to have gone significantly before I even venture out that far.
I fully intend to go to work next week - treatment - if we ever get any post and it is planned for me - permitting.
Anyway, I don't know, I'm just p1ssed off and annoyed and find this whole "being ill" stuff very difficult to deal with. I've said before that up until 30 months ago - I hadn't really been ill for 30 years and so coping with being ill, having a condition that could have (and still might) end up killing me are all new things to experience alongside, long periods of illness and all the other associated cr@p.
Not sure that is relevant but it came into my head after watching "My Son Jack" on DVD - one I got for Christmas. Lots of people worse off than me but I still complain and as a few blogs before this probably note - it is after all - all about ME and perhaps I ought to realise that.
I was out tonight and again, was pretty deaf and it showed and I was really struggling to get things sorted out and then I got a lift near to my house and the walk across the main road and the snow was a whole new adventure! I think that whilst I feel guilty not to go into work, frankly I'd be surprised if I can actually get more than a few hundred yards without losing my footing or losing my balance due to my ears and the affect this is having on me.
Part of me says go to work and the other part is saying - are you an idiot? - How well do you think you actually are and what on earth are you going to achieve by doing this? I'm sorely tempted to go in on Friday if things are OK just to say hello. I may even just go in for a few hours if I can, show my ugly face and retreat. Frankly it is absolutely treacherous outside and they don't pay me enough and it isn't important enough. The snow will have to have gone significantly before I even venture out that far.
I fully intend to go to work next week - treatment - if we ever get any post and it is planned for me - permitting.
Anyway, I don't know, I'm just p1ssed off and annoyed and find this whole "being ill" stuff very difficult to deal with. I've said before that up until 30 months ago - I hadn't really been ill for 30 years and so coping with being ill, having a condition that could have (and still might) end up killing me are all new things to experience alongside, long periods of illness and all the other associated cr@p.
Saw this which amused me
Apparently this is a real photo:
These workmen are installing bollards to stop nurses from parking on the pavement outside the Royal Hospital in Belfast. They are cleaning up at the end of the day. How long do you think it will be before they realise that they can't go home?
My Topsy Turvy World
Had a shower this morning and POP - deaf in my left ear. Not water in there - I'm very careful about that. So I'm back to being partially deaf again this morning, there isn't any pressure on the ear and it is crackling and popping away in there :-) it just means that I'm still not fixed yet.
On a sad note I see that a young "celebrity" here in the UK has got major problems now with her cancer and it has spread and has been described as "Aggressive" which I imagine is another one of those words you really don't want to hear when you have cancer. Like "Riddled", "Inoperable" and so on. In a way, whilst it is a tragedy for her and her children and she is only in her late 20s, it is a wake up call for me. My goodness, how would I cope with any of that, I'm really lucky in that it is under control and that brought my upcoming treatment into some sharp focus. What this next lot of treatment does is very much a belt and braces approach to the situation. It takes the approach that whilst we all probably have atypical cells, the ones they found in me ought to be treated as potentially nasty and so lets Zap them anyway.
Topsy Turvy world? Choppy Waters and back on the Roller Coaster - it will be OK in a few weeks when I get the timings of my treatments, get back into the flow of that, sort out my exercise and eating regimes and get fit again and begin to feel well and good about myself. This last month's turn of events has really laid me low and whilst I sound fed up and annoyed I'm still optimistic and looking forward - I know it will all change and sometimes, with something like this it can be in a few hours and the colds gone, your hearing is back and you feel good again. It just seems to be taking a long time to come along.
On a sad note I see that a young "celebrity" here in the UK has got major problems now with her cancer and it has spread and has been described as "Aggressive" which I imagine is another one of those words you really don't want to hear when you have cancer. Like "Riddled", "Inoperable" and so on. In a way, whilst it is a tragedy for her and her children and she is only in her late 20s, it is a wake up call for me. My goodness, how would I cope with any of that, I'm really lucky in that it is under control and that brought my upcoming treatment into some sharp focus. What this next lot of treatment does is very much a belt and braces approach to the situation. It takes the approach that whilst we all probably have atypical cells, the ones they found in me ought to be treated as potentially nasty and so lets Zap them anyway.
Topsy Turvy world? Choppy Waters and back on the Roller Coaster - it will be OK in a few weeks when I get the timings of my treatments, get back into the flow of that, sort out my exercise and eating regimes and get fit again and begin to feel well and good about myself. This last month's turn of events has really laid me low and whilst I sound fed up and annoyed I'm still optimistic and looking forward - I know it will all change and sometimes, with something like this it can be in a few hours and the colds gone, your hearing is back and you feel good again. It just seems to be taking a long time to come along.
Tuesday, February 03, 2009
Medium Depressed
I'm in a sort of no mans land at the moment. I haven't quite fully recovered from this illness, the hospitalisation (I swear I still feel tender in and around my bladder area) and the sluggishness that being stuck inside brings.
It isn't massively depressing and it isn't upsetting as such. It is draining and dragging. I've rapidly moved on from having stopped my University course and had some good comments back on part of my last assignment but also (and I must have been ill) I missed a part of the second question out - which is so unlike me. It was good that I left that and walked away when I did. It was weighing down on me.
Health really is my biggest concern at the moment. Just getting back to being fit again would be good and I need to plan out quite how I want to do that. Like many I hate exercise - it is repetitive and boring and just feels utterly pointless. I'd far rather do long walks and be doing something to get fit but you cannot structure those too easily where I can with my cross trainer. It is far easier to get in the habit of not doing exercise than doing it. I learnt that I shouldn't be doing exercises first thing in the morning and that ideally I should have some food inside me and so this really means I need to consider doing exercises in the evening when - of course - I get in from work after 12 hours out of the house. You can see the problem here. When I was exercising before I worked from home and was able to do 30 or 40 minutes a day every day. Well, if I am serious about getting fit then I need to schedule it and I need to ensure I do it. I remember to take my tablets, my pre and probiotics and my Vitamin C all the time now and so to stick in 30 or 40 minutes of exercise must be possible? To stick to it might not be. Of course then there is cooling down and having a shower as well so I need to put aside an hour at least and perhaps 3 to 4 times a week would be reasonable.
I used to do a lot of cycling but again, I haven't gotten around to that in a while and walking is OK but you really need to do a good distance and the light and weather are against me. It is nice for walks here but country walks in the fields and lanes where there is little light at all at this time of year.
Diet also needs to be looked at a bit more seriously too as I tend to eat well at home but with meetings out I do tend to have quite a bit of food like three or four course lunches, wine and beer, port and a cheese board - a bit like this week coming! A big meal tomorrow and another on Saturday.
I'm certain that I'll need to get onto the heath kick again if I am to drop my blood pressure and lose some weight but more importantly just to get my fitness levels up.
It isn't massively depressing and it isn't upsetting as such. It is draining and dragging. I've rapidly moved on from having stopped my University course and had some good comments back on part of my last assignment but also (and I must have been ill) I missed a part of the second question out - which is so unlike me. It was good that I left that and walked away when I did. It was weighing down on me.
Health really is my biggest concern at the moment. Just getting back to being fit again would be good and I need to plan out quite how I want to do that. Like many I hate exercise - it is repetitive and boring and just feels utterly pointless. I'd far rather do long walks and be doing something to get fit but you cannot structure those too easily where I can with my cross trainer. It is far easier to get in the habit of not doing exercise than doing it. I learnt that I shouldn't be doing exercises first thing in the morning and that ideally I should have some food inside me and so this really means I need to consider doing exercises in the evening when - of course - I get in from work after 12 hours out of the house. You can see the problem here. When I was exercising before I worked from home and was able to do 30 or 40 minutes a day every day. Well, if I am serious about getting fit then I need to schedule it and I need to ensure I do it. I remember to take my tablets, my pre and probiotics and my Vitamin C all the time now and so to stick in 30 or 40 minutes of exercise must be possible? To stick to it might not be. Of course then there is cooling down and having a shower as well so I need to put aside an hour at least and perhaps 3 to 4 times a week would be reasonable.
I used to do a lot of cycling but again, I haven't gotten around to that in a while and walking is OK but you really need to do a good distance and the light and weather are against me. It is nice for walks here but country walks in the fields and lanes where there is little light at all at this time of year.
Diet also needs to be looked at a bit more seriously too as I tend to eat well at home but with meetings out I do tend to have quite a bit of food like three or four course lunches, wine and beer, port and a cheese board - a bit like this week coming! A big meal tomorrow and another on Saturday.
I'm certain that I'll need to get onto the heath kick again if I am to drop my blood pressure and lose some weight but more importantly just to get my fitness levels up.
Glad that
I didn't go into work today it looked horrendous, people falling down as the roads and pavements weren't gritted - ludicrous and the hospitals now stretched because of all these falls! With the slight balance problem I have it would have been murder getting to the station as there are two bits of the path and pavement that are steep and I can guarantee they would be like sheets of ice (doh!) well they would be of course.
Despite getting cold and that the trains aren't working properly and with everything else I'm sort of glad, in a way, that I still have problems with my ears and still slightly blocked up.
I do hope to get out of the house tomorrow afternoon and evening if I possibly can as there is a Lodge meeting and I'd like to attend that and do "my bit" in that. At least it will get me out of the house and talking to some adult company rather than being stuck in here.
I am going to a Lodge meeting on Saturday where we will have a Burns Supper and I am really looking forward to going to that again. I went last year but was unable to drink as I had the Cat with me. This year I am being driven there and back which is great. They have Haggis, Neaps and Tatties and Gravy (whisky) the ode to the Haggis is done by some Scottish Masons who come down especially for the weekend. After we have had the meal we go off to another location and have what they call a Harmony which consists of singing and tales and jokes mixed with some more drinks of course - it is a lovely meeting.
Despite getting cold and that the trains aren't working properly and with everything else I'm sort of glad, in a way, that I still have problems with my ears and still slightly blocked up.
I do hope to get out of the house tomorrow afternoon and evening if I possibly can as there is a Lodge meeting and I'd like to attend that and do "my bit" in that. At least it will get me out of the house and talking to some adult company rather than being stuck in here.
I am going to a Lodge meeting on Saturday where we will have a Burns Supper and I am really looking forward to going to that again. I went last year but was unable to drink as I had the Cat with me. This year I am being driven there and back which is great. They have Haggis, Neaps and Tatties and Gravy (whisky) the ode to the Haggis is done by some Scottish Masons who come down especially for the weekend. After we have had the meal we go off to another location and have what they call a Harmony which consists of singing and tales and jokes mixed with some more drinks of course - it is a lovely meeting.
It still is all about me then?
Anne posed a question or perhaps provided a thought that's pretty important to realise. Here is the quote:
"It may help to realise that the desires of those around you are less about you and more about themselves - their fears and what the 'new you' means for them. In reality all you can do is be courageously yourself and invite them to address their own issues with that. They have their own journey to the acceptance you have found and it's not your job to make that journey for them."
Those who read this blog and actually know me, may well see what problem I'd have with this straight off. That is that by my actions I've set off something that I didn't want and that I have no control or influence over. Those around me having to deal with something that I have makes me feel guilty that it has happened and that their lives are affected. It's OK to mess me around but not those who I know and love - that isn't fair is it? Mind you what is fair? Cancer isn't fair anyway and just look at this - it affects loads of people even if they haven't got it! Nasty pernicious disease.
Balance that with, I had no control over getting Cancer (and we can argue whether it was self inflicted at another time) and the quandary becomes clearer:
In my way of thinking - I have affected the lives of those around me. They have to live with that and the consequences of something that I have caused. In my normal day to day life I would be mortified if through my actions I did something, anything that would detrimentally affects others. I feel somehow responsible.
Anne's point is that actually, I can't do an awful lot about that, it is what it is and whilst I can empathise and do whatever I can I can't experience their journey for them, feel what they feel about it (if they feel anything at all about it that is) and do much about it at all.
If I accept that, then it tends to ease some of the pressure I put on myself and explain some of the concerns I've expressed in my blog. I think it also reinforces the feeling I've had for sometime that whatever is going to happen will and there isn't a great deal I can realistically do about that.
In a number of posts going right back to 2006 I've often said that I thought it was all about me, that it is a selfish thing, that only I have to go through the treatment, only I have the mental anguish, only I am sick etc. Then I counteract that with concerns for all the people that are affected by my illness and so the fight goes on in my head about this. Is it me, is it the family, is it my parents and relatives, work colleagues, friends and so on.
You can't help what has happened to you, if it had been the other way around and it had been someone I know, then what would I have felt like? I have a number of friends in the same boat as I am and whilst we all speak the same language and outwardly project the same sorts of issues with our disease, I don't have a relationship issue with them in the way that I think I would with someone in my family getting it.
I think though that Anne is indeed right about one thing. If I hadn't actually had cancer then I probably wouldn't see what all the fuss was about and I'd be getting on doing my own thing as apart from sympathy and empathy, what else could I actually do? I'd know about the treatments and the operations but not have to live through them and so they would be out of my experience and in some way distant from me, it would be a wholly different thing to live through.
It's all about me still but it is less about trying to solve everyone else's problems. I cannot do that - neither can I change their thoughts, their feelings or anything else.
Well it has given me an interesting way of looking at things and I think I have to agree with Anne's statement. Whether I like it or not, it's probably exactly what IS going on and everyone else happily gets on and does their own thing here anyway.
"It may help to realise that the desires of those around you are less about you and more about themselves - their fears and what the 'new you' means for them. In reality all you can do is be courageously yourself and invite them to address their own issues with that. They have their own journey to the acceptance you have found and it's not your job to make that journey for them."
Those who read this blog and actually know me, may well see what problem I'd have with this straight off. That is that by my actions I've set off something that I didn't want and that I have no control or influence over. Those around me having to deal with something that I have makes me feel guilty that it has happened and that their lives are affected. It's OK to mess me around but not those who I know and love - that isn't fair is it? Mind you what is fair? Cancer isn't fair anyway and just look at this - it affects loads of people even if they haven't got it! Nasty pernicious disease.
Balance that with, I had no control over getting Cancer (and we can argue whether it was self inflicted at another time) and the quandary becomes clearer:
In my way of thinking - I have affected the lives of those around me. They have to live with that and the consequences of something that I have caused. In my normal day to day life I would be mortified if through my actions I did something, anything that would detrimentally affects others. I feel somehow responsible.
Anne's point is that actually, I can't do an awful lot about that, it is what it is and whilst I can empathise and do whatever I can I can't experience their journey for them, feel what they feel about it (if they feel anything at all about it that is) and do much about it at all.
If I accept that, then it tends to ease some of the pressure I put on myself and explain some of the concerns I've expressed in my blog. I think it also reinforces the feeling I've had for sometime that whatever is going to happen will and there isn't a great deal I can realistically do about that.
In a number of posts going right back to 2006 I've often said that I thought it was all about me, that it is a selfish thing, that only I have to go through the treatment, only I have the mental anguish, only I am sick etc. Then I counteract that with concerns for all the people that are affected by my illness and so the fight goes on in my head about this. Is it me, is it the family, is it my parents and relatives, work colleagues, friends and so on.
You can't help what has happened to you, if it had been the other way around and it had been someone I know, then what would I have felt like? I have a number of friends in the same boat as I am and whilst we all speak the same language and outwardly project the same sorts of issues with our disease, I don't have a relationship issue with them in the way that I think I would with someone in my family getting it.
I think though that Anne is indeed right about one thing. If I hadn't actually had cancer then I probably wouldn't see what all the fuss was about and I'd be getting on doing my own thing as apart from sympathy and empathy, what else could I actually do? I'd know about the treatments and the operations but not have to live through them and so they would be out of my experience and in some way distant from me, it would be a wholly different thing to live through.
It's all about me still but it is less about trying to solve everyone else's problems. I cannot do that - neither can I change their thoughts, their feelings or anything else.
Well it has given me an interesting way of looking at things and I think I have to agree with Anne's statement. Whether I like it or not, it's probably exactly what IS going on and everyone else happily gets on and does their own thing here anyway.
A new way to look at things
On my last post there is a comment from Anne you can find it here. It is very interesting to me as it actually has made me stop and now think differently about a situation so thanks Anne.
Whilst I do tend to do 360 Degree stuff at work and when I am planning things I didn't apply it to this blog or my situation. Which is strange but then I use different techniques at work and when I am just living :-)
For example, I'd be looking at stakeholder mapping and how people will react to change as part of a major project or program plan but at home, much as I'd like to apply project management principles to my home life, that just doesn't happen. The nearest we get is running a family diary and notice board in the kitchen - even then it is fallible and could you imagine me holding the family progress meeting once a week. Producing an agenda and minutes and actions plans "So, Mrs. F. How have you progressed with the transportation and logistics issues we discussed last week?" "Do you mean did I get the children to school, get the shopping, tax the car and fill yours with petrol? The answers is yes!" - I'd deserve that :-)
So what I might want to do is to apply a little thought to how other people are dealing with me rather than how I think I am affecting other people and turn the question on its head and also the approach to rationalising it.
I'm rather pleased that Anne put it in a question that I had considered and discarded. I'm off to go and give this some serious thought and will put out my thoughts and ramblings when I've done that. It always surprises me that when I'm at work I can come up with these questions and when I act as a Consultant I'm able to take all these different views and yet somehow, because it is me, my family and my situation, I am not able to. The answer of course is that I cannot be detached from my own thoughts, and who I am. In business, it is what I do..
I feel like a weight has gone off of my mind for a while - maybe I've found something that I don't need to beat myself up about? I'm very good at doing that.
Whilst I do tend to do 360 Degree stuff at work and when I am planning things I didn't apply it to this blog or my situation. Which is strange but then I use different techniques at work and when I am just living :-)
For example, I'd be looking at stakeholder mapping and how people will react to change as part of a major project or program plan but at home, much as I'd like to apply project management principles to my home life, that just doesn't happen. The nearest we get is running a family diary and notice board in the kitchen - even then it is fallible and could you imagine me holding the family progress meeting once a week. Producing an agenda and minutes and actions plans "So, Mrs. F. How have you progressed with the transportation and logistics issues we discussed last week?" "Do you mean did I get the children to school, get the shopping, tax the car and fill yours with petrol? The answers is yes!" - I'd deserve that :-)
So what I might want to do is to apply a little thought to how other people are dealing with me rather than how I think I am affecting other people and turn the question on its head and also the approach to rationalising it.
I'm rather pleased that Anne put it in a question that I had considered and discarded. I'm off to go and give this some serious thought and will put out my thoughts and ramblings when I've done that. It always surprises me that when I'm at work I can come up with these questions and when I act as a Consultant I'm able to take all these different views and yet somehow, because it is me, my family and my situation, I am not able to. The answer of course is that I cannot be detached from my own thoughts, and who I am. In business, it is what I do..
I feel like a weight has gone off of my mind for a while - maybe I've found something that I don't need to beat myself up about? I'm very good at doing that.
Monday, February 02, 2009
Not a lot changes
I went and looked at 2007 February posts - they were a bit more oblique then as I couldn't say much and the blog was anonymous at the time. The reason? Well I was going through the redundancy and I didn't want that to be googled and at that time I was also going through the Insurance Claim and just trying to sort it all out.
It was only 7 months in and having been well and truly knocked about by then and after having the first 6 treatments which were no holiday either a lot of things were setting in. I was in a right state back then.
I am nowhere near as low and depressed as I was then - my goodness, when I look back and see it now, I was going through all sorts of problems and they weren't easy to rationalise at all.
There was a lot of oblique references and I was having all sorts of troubles with understanding what my mind and body were doing to me.
I wonder how other people seem to just cope with this or whether they really have the issues I experience?
I was interested that Mrs F reckons that I (she used we) have changed a lot. I can't see that anyone else has changed that much. Me - I'm larger "than life" than I was before, more empathetic and more tolerant and in some ways - more so at work - a non panicker, if there is such a person? Perhaps a bit more assertive - which can be a bit of a character fault I think, I do try not to be like that but occasionally I get on my box and give it some. In other ways I am more emotional - more likely to get upset at things that before never troubled me - for goodness sake don't show me Bambi's mother dying - you get the picture? In other ways I'm fragile too. I don't take well to bad news and set backs or to being ill at all.
I'm not so sure everyone else has changed. They may have adapted, they may even like the new me, I think the family do as I am rarely angry these days and I am affable, helpful and that is a different me. I don't see much to have changed them other than they aren't on their guard and things are more fun in the house.
I'm not certain that everything has panned out yet. I think that it will take me a while now to reconcile work, ongoing treatment (the acceptance of being treated long term) and my business and personal life need to settle down properly. I have always mentioned that I feel there will be collateral damage here and it is a feeling that I am going to do something really stupid that ends a friendship, starts of a feud or breaks apart a relationship which plays on my mind. I feel it more than know it, I believe that there is some sort of pay back for getting my health back again?
If that sounds strange - it goes back to those early days and how at each stage you "think" things will unfold. You do the scenarios in your head, the "what ifs" and you play each one. The worst case scenario would have probably meant that this blog would have finished about 6 months ago and be left online as a sign of how it could end. Alongside that scenario were many things about my family and friends, what I'd do, my legacy if you will.
Then there were other scenarios, leading up to the one I am in now which includes the phrase: "So you've got your life back, no more treatment, just observations, your health is in control - what are you gong to do with this new birth, this new life you just got given to you?"
When I answer that one, there are many outcomes to the question, many roads and many consequences of the actions that I could take. In reality, they are the questions and the scenarios I play out that do keep me awake at night and make me think long and hard about consequences not just for me but for everyone. Me, I want to just go off and let off steam for a while and celebrate and enjoy myself, not have to work too much and catch up on loads of things I missed when I was working hard, long hours, away from home and having little home or social life.
The collateral damage may be that it is too much of a change for me or for other people to live with. The flip side is that I may not want them to live with it myself and that really does worry me that in my mind I can see myself being quite that rebellious or uncaring about people but I'm wondering after all these years whether I should be more selfish than I am? If I am to do that, then I wonder how far would I go in concentrating on me? Can you really celebrate your well being at a given time every day? Are you allowed to be happy once a week? If no one is prepared to let you be yourself (your new self) then perhaps you have to go and be your new self somewhere else?
When I said not a lot changes - I'd say after I got the first good signs and realised that I'd probably survive this, these thoughts started to rumble through my mind. They are more structured now and grow so each day.
I fully expect that something will trigger off events that is totally out of my control. Some event at work, home, social etc that will then make the decision for me and one of the scenarios in my head will start to play itself out. I can't predict the future nor can I change the path but I wish I could stop my brain working and permutating each and every move as it may never happen :-)
It was only 7 months in and having been well and truly knocked about by then and after having the first 6 treatments which were no holiday either a lot of things were setting in. I was in a right state back then.
I am nowhere near as low and depressed as I was then - my goodness, when I look back and see it now, I was going through all sorts of problems and they weren't easy to rationalise at all.
There was a lot of oblique references and I was having all sorts of troubles with understanding what my mind and body were doing to me.
I wonder how other people seem to just cope with this or whether they really have the issues I experience?
I was interested that Mrs F reckons that I (she used we) have changed a lot. I can't see that anyone else has changed that much. Me - I'm larger "than life" than I was before, more empathetic and more tolerant and in some ways - more so at work - a non panicker, if there is such a person? Perhaps a bit more assertive - which can be a bit of a character fault I think, I do try not to be like that but occasionally I get on my box and give it some. In other ways I am more emotional - more likely to get upset at things that before never troubled me - for goodness sake don't show me Bambi's mother dying - you get the picture? In other ways I'm fragile too. I don't take well to bad news and set backs or to being ill at all.
I'm not so sure everyone else has changed. They may have adapted, they may even like the new me, I think the family do as I am rarely angry these days and I am affable, helpful and that is a different me. I don't see much to have changed them other than they aren't on their guard and things are more fun in the house.
I'm not certain that everything has panned out yet. I think that it will take me a while now to reconcile work, ongoing treatment (the acceptance of being treated long term) and my business and personal life need to settle down properly. I have always mentioned that I feel there will be collateral damage here and it is a feeling that I am going to do something really stupid that ends a friendship, starts of a feud or breaks apart a relationship which plays on my mind. I feel it more than know it, I believe that there is some sort of pay back for getting my health back again?
If that sounds strange - it goes back to those early days and how at each stage you "think" things will unfold. You do the scenarios in your head, the "what ifs" and you play each one. The worst case scenario would have probably meant that this blog would have finished about 6 months ago and be left online as a sign of how it could end. Alongside that scenario were many things about my family and friends, what I'd do, my legacy if you will.
Then there were other scenarios, leading up to the one I am in now which includes the phrase: "So you've got your life back, no more treatment, just observations, your health is in control - what are you gong to do with this new birth, this new life you just got given to you?"
When I answer that one, there are many outcomes to the question, many roads and many consequences of the actions that I could take. In reality, they are the questions and the scenarios I play out that do keep me awake at night and make me think long and hard about consequences not just for me but for everyone. Me, I want to just go off and let off steam for a while and celebrate and enjoy myself, not have to work too much and catch up on loads of things I missed when I was working hard, long hours, away from home and having little home or social life.
The collateral damage may be that it is too much of a change for me or for other people to live with. The flip side is that I may not want them to live with it myself and that really does worry me that in my mind I can see myself being quite that rebellious or uncaring about people but I'm wondering after all these years whether I should be more selfish than I am? If I am to do that, then I wonder how far would I go in concentrating on me? Can you really celebrate your well being at a given time every day? Are you allowed to be happy once a week? If no one is prepared to let you be yourself (your new self) then perhaps you have to go and be your new self somewhere else?
When I said not a lot changes - I'd say after I got the first good signs and realised that I'd probably survive this, these thoughts started to rumble through my mind. They are more structured now and grow so each day.
I fully expect that something will trigger off events that is totally out of my control. Some event at work, home, social etc that will then make the decision for me and one of the scenarios in my head will start to play itself out. I can't predict the future nor can I change the path but I wish I could stop my brain working and permutating each and every move as it may never happen :-)
A look back to April 2007
My goodness I went through a load of trouble then, blood pressure, possible diabetes, exercise, no salt, dietary changes and redundancy from my old company and the introduction to the dick heads I worked with after that for a while.
Life really was a roller coaster of a ride, changing hourly almost some days, tortured by the black dog, staring at a less than certain future both health and career wise.
The mind has a great way of forgetting that sort of thing and what I like about the blog is the ability to rewind and go and look and then say to yourself, it isn't so bad at the moment.
Of course, I still hate being a victim of BC and being weakened by it and the treatment and now this cold and my ears still aren't working properly! I wonder if I have done some serious damage or whether it still needs to clear. Many people I know who had this before Christmas say they are still suffering from it :-( It doesn't sound good at all.
I need to remind myself I am improving, I need to remind myself that I have very little pressure in my job, social and academic life anymore and I just need to concentrate on getting well, doing what I do well at work and elsewhere and relaxing, removing the stress and pressure I put on myself and just get well.
It's easy to keep gong back into "the victim" role and it is too easy to be overly reflective and inward thinking and so a gradual break away from that must start to happen.
Life really was a roller coaster of a ride, changing hourly almost some days, tortured by the black dog, staring at a less than certain future both health and career wise.
The mind has a great way of forgetting that sort of thing and what I like about the blog is the ability to rewind and go and look and then say to yourself, it isn't so bad at the moment.
Of course, I still hate being a victim of BC and being weakened by it and the treatment and now this cold and my ears still aren't working properly! I wonder if I have done some serious damage or whether it still needs to clear. Many people I know who had this before Christmas say they are still suffering from it :-( It doesn't sound good at all.
I need to remind myself I am improving, I need to remind myself that I have very little pressure in my job, social and academic life anymore and I just need to concentrate on getting well, doing what I do well at work and elsewhere and relaxing, removing the stress and pressure I put on myself and just get well.
It's easy to keep gong back into "the victim" role and it is too easy to be overly reflective and inward thinking and so a gradual break away from that must start to happen.
We would like to inform you that
The UK is officially closed until further notice - with a further 4 to 6" of snow on the way, no transport running and snow like we haven't seen for 18 - 20 years or more, we might as well just shut up shop until it thaws out :-)
If you wanted to pick a more inappropriate day to
Go back to work then today would be it. It started snowing around 5pm yesterday and hasn't stopped ever since. As is usual in the UK, no one was ready for it despite being told at least 5 days in advance. The trains aren't running, airports are closed, cars wont start, roads are blocked, schools are closed and so on.
There was a good chance that I would have gone in today but getting myself chilled to the bone to struggle into work would be rather stupid. L is happy as she is with her friends having a massive snowball fight by the sounds of it and A gets a day to do her mini project in support of her University entrance. She has been doing some strange photography in the garden mainly involving time lapse photos and shaking snow off of tress and other items? Don't ask me whilst I might be thought of as creative, I don't have the "eye" for a good photograph. I do OK but A can take a similar shot to me and it will be much better, have a centre of attention, good focus etc.
So - I doubt that tomorrow will see a major improvement in the transport system so perhaps I might finally make an appearance on Wednesday. If I do that I have an evening meeting here that will mean I'd better do a half day.
At least I may be able to do Thursday and Friday this time.
There was a good chance that I would have gone in today but getting myself chilled to the bone to struggle into work would be rather stupid. L is happy as she is with her friends having a massive snowball fight by the sounds of it and A gets a day to do her mini project in support of her University entrance. She has been doing some strange photography in the garden mainly involving time lapse photos and shaking snow off of tress and other items? Don't ask me whilst I might be thought of as creative, I don't have the "eye" for a good photograph. I do OK but A can take a similar shot to me and it will be much better, have a centre of attention, good focus etc.
So - I doubt that tomorrow will see a major improvement in the transport system so perhaps I might finally make an appearance on Wednesday. If I do that I have an evening meeting here that will mean I'd better do a half day.
At least I may be able to do Thursday and Friday this time.
Interesting
L is off for a month on her World Challenge later this year to Argentina. A has booked to go to Italy for a couple of weeks.
GULP - that means Mrs F and I will need to actually talk to each other and probably go on holiday together too!!
I'm all for a few weeks in a quiet pool side hot location - I think Mrs F. fancies a wander around the Baltic or some such "activity" holiday.
I guess it is going to be a case of Love, Honour and Negotiate!!
GULP - that means Mrs F and I will need to actually talk to each other and probably go on holiday together too!!
I'm all for a few weeks in a quiet pool side hot location - I think Mrs F. fancies a wander around the Baltic or some such "activity" holiday.
I guess it is going to be a case of Love, Honour and Negotiate!!
Sunday, February 01, 2009
Day interrupted
Why organise something if you can't actually cook! My Sister In Law, decided to have her mums 80th birthday party this Sunday despite us trying to arrange it sometime later in March when everyone could get there! I had a day interpreted by phone calls about how to cook various things but eventually I dispatched A, L & Mrs F. to go sort it out and I arrived with lots more bits (ingredients that had been forgotten) a little later, In fact WE cooked the meal, I carved and A & L served!!! Which was what we were going to do when I had originally planned to do it here.
You may gather from this that I can actually cook a bit! My Grandfather was (I believe) something of a Master Chef or similar and my Dad is pretty handy too. Again, with me, it's like my painting, I don't do enough of it to be really good at it but I can whip up a pretty good meal.
Anyway it was an OK day and as long as you can laugh at your insane Sister In Law - and we can, then it is OK. I had a few beers, the food was good and there was cake, banoffee pie and trifle if you wanted it too. I was absolutely stuffed when I came back. I liked the comment that they thought I looked well and that I had lost weight since they last saw me on Boxing Day. I'm not surprised I lost weight as I almost lived on soup for two weeks when i was really bad.
So, that disrupted the work I was planning on doing this morning. Blow me, when I got there my ears played up again and I was partially deaf again. It really is that in between state when you get great hearing followed by this sort of dull noise. I now have about 100 envelopes to stuff and get posted. I'll see what the snow is like tomorrow - I might venture up to the Post Office to get them all posted.
We got home before the snow came which looks to be a good 4 to 6" worth at the moment and more is predicted. needless to say, I will not be going to work tomorrow. Many is the time I have walked 30 minutes to the Station and then stood hanging around for 30 or more minutes waiting for a train etc. With my level of fitness I very much doubt that my body would be up for that sort of shock treatment.
You may gather from this that I can actually cook a bit! My Grandfather was (I believe) something of a Master Chef or similar and my Dad is pretty handy too. Again, with me, it's like my painting, I don't do enough of it to be really good at it but I can whip up a pretty good meal.
Anyway it was an OK day and as long as you can laugh at your insane Sister In Law - and we can, then it is OK. I had a few beers, the food was good and there was cake, banoffee pie and trifle if you wanted it too. I was absolutely stuffed when I came back. I liked the comment that they thought I looked well and that I had lost weight since they last saw me on Boxing Day. I'm not surprised I lost weight as I almost lived on soup for two weeks when i was really bad.
So, that disrupted the work I was planning on doing this morning. Blow me, when I got there my ears played up again and I was partially deaf again. It really is that in between state when you get great hearing followed by this sort of dull noise. I now have about 100 envelopes to stuff and get posted. I'll see what the snow is like tomorrow - I might venture up to the Post Office to get them all posted.
We got home before the snow came which looks to be a good 4 to 6" worth at the moment and more is predicted. needless to say, I will not be going to work tomorrow. Many is the time I have walked 30 minutes to the Station and then stood hanging around for 30 or more minutes waiting for a train etc. With my level of fitness I very much doubt that my body would be up for that sort of shock treatment.
Neither one thing or the other
I had the same thing yesterday as I've had for a few days now which is my hearing returns after a quick blow on my nose in the morning although it seems fine without that this morning but it fades away as the day goes on becoming worse especially mid to late evening.
I've still got the occasional cough and sneeze and I suppose that it is the final throes of the original cold and also clearing out the muck in my head.
It's a sort of no-mans land stuck between being ill and back to normal. I'm trying to balance whether I go to work on Monday given that we are probably going to have winds blowing in off of Siberia and Snow. My ear aches now, heaven knows what a blast of cold air would add to the experience. Much as I'm loathe to do it, I think another day or so is best to settle things down and then, perhaps, go back part time until I feel up to it.
Knowing that this country almost halts when a single flake of snow or even the "wrong sort of snow" arrives, I could place a good bet on the trains being frozen to their points, the roads gridlocked and me freezing on an open platform after my mile and a bit walk there. To say nothing of slipping and sliding my way to work when I am slightly dizzy from my ear problem anyway. It really is a no brainer.
I'm convinced that I am fit and healthy and can climb Mount Everest (which I can after a number of Beers anyway of course!) when I should be realising I cannot. I actually don't realise I can't do it until I have overdone it and isn't that always the way? I shall listen to my little voice in my head who tells me that "That isn't a good idea!" :-) I should also start acknowledging that it isn't necessary to be there tomorrow - why risk it? What's the worst that can happen by not being there? Easy to say and type all these things but if you are anything like me, you don't want to let anyone down and you want to do your bit and all that good stuff yet, like me, you'd probably give someone a bit of grief if they struggled into work in the condition I am in at the moment! :-)
Other than this - I find that I am feeling kind of OK. I'm not great but I am certainly no where near as bad as I was a week or even two weeks ago!
If I don't go in, I'll have only lost some money for the day. I reckon if I try and struggle in I'd probably be off work for longer.
I've still got the occasional cough and sneeze and I suppose that it is the final throes of the original cold and also clearing out the muck in my head.
It's a sort of no-mans land stuck between being ill and back to normal. I'm trying to balance whether I go to work on Monday given that we are probably going to have winds blowing in off of Siberia and Snow. My ear aches now, heaven knows what a blast of cold air would add to the experience. Much as I'm loathe to do it, I think another day or so is best to settle things down and then, perhaps, go back part time until I feel up to it.
Knowing that this country almost halts when a single flake of snow or even the "wrong sort of snow" arrives, I could place a good bet on the trains being frozen to their points, the roads gridlocked and me freezing on an open platform after my mile and a bit walk there. To say nothing of slipping and sliding my way to work when I am slightly dizzy from my ear problem anyway. It really is a no brainer.
I'm convinced that I am fit and healthy and can climb Mount Everest (which I can after a number of Beers anyway of course!) when I should be realising I cannot. I actually don't realise I can't do it until I have overdone it and isn't that always the way? I shall listen to my little voice in my head who tells me that "That isn't a good idea!" :-) I should also start acknowledging that it isn't necessary to be there tomorrow - why risk it? What's the worst that can happen by not being there? Easy to say and type all these things but if you are anything like me, you don't want to let anyone down and you want to do your bit and all that good stuff yet, like me, you'd probably give someone a bit of grief if they struggled into work in the condition I am in at the moment! :-)
Other than this - I find that I am feeling kind of OK. I'm not great but I am certainly no where near as bad as I was a week or even two weeks ago!
If I don't go in, I'll have only lost some money for the day. I reckon if I try and struggle in I'd probably be off work for longer.
Saturday, January 31, 2009
Saturday working
Well the committee meeting needs documenting and the paperwork needs sorting out, envelopes need filling and addressing and today is just one endless stream of administration work. I still have partial hearing although I can feel it getting ready to come back to normal - it really is a nuisance as it comes and goes, pops and clicks!
I was talking to someone tonight who is a fellow sufferer and he has finished his treatment but had the 10-12 year cycle and is nice and clear and has been for years. We had a laugh as I was so ill when I sent out the notices that I forgot two of the committee members. It is a bit like a number of other basic errors I made on the Lodge documents. Luckily having reread these I've picked up on them.
Typical to go deaf just as the meeting got going - just what I didn't need really but there you go.
Anyway, as committee meetings go it was a difficult one to run as there was a lot to get through and stuff that needed airing rather than decisions being made. It can be hard work as you can imagine.
I was talking to someone tonight who is a fellow sufferer and he has finished his treatment but had the 10-12 year cycle and is nice and clear and has been for years. We had a laugh as I was so ill when I sent out the notices that I forgot two of the committee members. It is a bit like a number of other basic errors I made on the Lodge documents. Luckily having reread these I've picked up on them.
Typical to go deaf just as the meeting got going - just what I didn't need really but there you go.
Anyway, as committee meetings go it was a difficult one to run as there was a lot to get through and stuff that needed airing rather than decisions being made. It can be hard work as you can imagine.
Blast it all
I went to the meeting tonight and was partially deaf again. What a nuisance although I could laugh at myself I wasn't happy as it was an important meeting.
Lots of things were decided and I had to keep track of the meeting and write the minutes.
I'm annoyed as I felt I was on the mend and then - bang my ears are back to ringing and noise but no hearing again.
Grrrrrr.
Lots of things were decided and I had to keep track of the meeting and write the minutes.
I'm annoyed as I felt I was on the mend and then - bang my ears are back to ringing and noise but no hearing again.
Grrrrrr.
Friday, January 30, 2009
So a Guy from DHL walks up to the door....
And I have a double parcel thing from Ben's Cookies? Well I don't remember ordering anything form a company like that and I wonder perhaps if it is a late order from my online Christmas Shopping or perhaps some IT component.
DOH - no it is hand made cookies - 30 of them - they are lovely - a get well present from everyone at work - what a lovely gesture and they are really tasty. L has arrived from school - she tells me that I am her "Bestest Friend Ever" - "just take a cookie" I tell her. A note in the box says consume within 4 days - I explain to L that it is a recommendation and not a challenge :-)
Mrs F. And I went for a walk - together - thought I'd say that. We live on the edge of the countryside and so in 5 minutes we were walking past the church where we got married (big notice about no refunds??) across the fields and through the woods where the Spitfire Pilot from WW2 is buried. We aren't far from the WW2 airfield of Biggin Hill and I actually hear planes and a Helicopter today and other sounds but somehow I have less hearing on returning from our walk :-( All the signs are good and I feel so much better today, still not right, but a lot better than I have been for days, you can tell in my outlook, the way I talk, think and act too.
On a sadder note, the confirmation of my withdrawal from my University course has come through. I get some credit towards another course if I want to do that. I'd love to but serious appraisals need to happen before then.
What to do with all my spare time. Parkinson's Law will suffice "Work expands so as to fill the time available for its completion". Actually I hope it doesn't - why make a hole in my time if I don't do something with it rather than filling it with stuff I already manage to do - ouch writing that made my head hurt :-)
Off to a committee meeting this evening - should be a laugh - everyone treats these things as being pretty serious - of course it isn't, its like all committees though and I just know I'll have to bite my tongue many times this evening. I'd really love to fire in some SMOL (smart ass one liners) occasionally but perhaps better keep my tongue in check.
Right - Kettle on and 30 Cookies to be eaten before the weekend is out. Somehow I don't think that a mathematician will be needed on that one but I hate to put back all the weight that I have involuntarily lost these past 4 weeks or so! Mind you it is always worth trying.
The healthy diet? Well - you have to indulge yourself sometimes and so that can start again on Monday or when the cookies have run out :-)
DOH - no it is hand made cookies - 30 of them - they are lovely - a get well present from everyone at work - what a lovely gesture and they are really tasty. L has arrived from school - she tells me that I am her "Bestest Friend Ever" - "just take a cookie" I tell her. A note in the box says consume within 4 days - I explain to L that it is a recommendation and not a challenge :-)
Mrs F. And I went for a walk - together - thought I'd say that. We live on the edge of the countryside and so in 5 minutes we were walking past the church where we got married (big notice about no refunds??) across the fields and through the woods where the Spitfire Pilot from WW2 is buried. We aren't far from the WW2 airfield of Biggin Hill and I actually hear planes and a Helicopter today and other sounds but somehow I have less hearing on returning from our walk :-( All the signs are good and I feel so much better today, still not right, but a lot better than I have been for days, you can tell in my outlook, the way I talk, think and act too.
On a sadder note, the confirmation of my withdrawal from my University course has come through. I get some credit towards another course if I want to do that. I'd love to but serious appraisals need to happen before then.
What to do with all my spare time. Parkinson's Law will suffice "Work expands so as to fill the time available for its completion". Actually I hope it doesn't - why make a hole in my time if I don't do something with it rather than filling it with stuff I already manage to do - ouch writing that made my head hurt :-)
Off to a committee meeting this evening - should be a laugh - everyone treats these things as being pretty serious - of course it isn't, its like all committees though and I just know I'll have to bite my tongue many times this evening. I'd really love to fire in some SMOL (smart ass one liners) occasionally but perhaps better keep my tongue in check.
Right - Kettle on and 30 Cookies to be eaten before the weekend is out. Somehow I don't think that a mathematician will be needed on that one but I hate to put back all the weight that I have involuntarily lost these past 4 weeks or so! Mind you it is always worth trying.
The healthy diet? Well - you have to indulge yourself sometimes and so that can start again on Monday or when the cookies have run out :-)
Easing of the pressure
Well not only has the pressure eased off my ear - at last and thank goodness but I am also relieved not to be looking at the University work anymore. I was really struggling with it and the thought of having to get that done by tonight - although I can hear today - was concerning. There was no way I could have learnt poetry in a day and then done a 600 word comparison of 2 poems!!
So today, it does feel like a weight has come off me and I'm pleased about that and can move on.
What I'm not massively pleased about is the conversation I had with my successor in the Lodge who has, after 5 years had to withdraw, meaning that I will probably have to do another year as Secretary of my Lodge. No great deal you may think but this job entails a lot of work because the Lodge is one of the largest and has many members, it is quite prestigious, it gets invites around the country so I represent it and it also has to be managed in terms of web site, e-mail, printing, membership and returns etc so no mean feat. I was due to give this up in June and to find a suitable replacement and get them trained and up to speed by then may be possible but it looks as if I will have to do another year, get someone to do a few and then get the understudy to take over.
Tonight is our committee meeting so we can discuss that then. I have to organise that too which is a bit of an effort on its own with all the yearly statistics and so on. Because of the nature of the membership of the Lodge it needs to be run properly and administered correctly and it requires attention to detail, planning and preparation and above all time to do the job properly. None of which the incoming guy could commit to at the moment.
So the balance continues, you lose pressure off one side and someone equals it out by putting pressure in to the system elsewhere.
So today, it does feel like a weight has come off me and I'm pleased about that and can move on.
What I'm not massively pleased about is the conversation I had with my successor in the Lodge who has, after 5 years had to withdraw, meaning that I will probably have to do another year as Secretary of my Lodge. No great deal you may think but this job entails a lot of work because the Lodge is one of the largest and has many members, it is quite prestigious, it gets invites around the country so I represent it and it also has to be managed in terms of web site, e-mail, printing, membership and returns etc so no mean feat. I was due to give this up in June and to find a suitable replacement and get them trained and up to speed by then may be possible but it looks as if I will have to do another year, get someone to do a few and then get the understudy to take over.
Tonight is our committee meeting so we can discuss that then. I have to organise that too which is a bit of an effort on its own with all the yearly statistics and so on. Because of the nature of the membership of the Lodge it needs to be run properly and administered correctly and it requires attention to detail, planning and preparation and above all time to do the job properly. None of which the incoming guy could commit to at the moment.
So the balance continues, you lose pressure off one side and someone equals it out by putting pressure in to the system elsewhere.
A Good Sleep
My goodness - I had a long and uninterrupted sleep and got about 11 hours worth and feel really quite good this morning. My hearing has popped up a notch more this morning and whilst I still have the high pitched noise in my ear it is a little more bearable and is quieter than normal.
I really can hear a lot more this morning and details like this PC keyboard clicking away and the fans on the PCs whirring are really noticeable.
Steve K in the US has had his first set of maintenance and found out just how strange treatment can be, one day you cannot believe that you have had it done and all seems to be quite bearable and the next you are off the scale. I wonder what mine will be like. I'm guessing as I haven't had the letter that it wont be next Monday for me - just as well - not sure I'd feel up to them but probably the 9th February which is another day in my diary as AndyP will have his rigid cystoscopy and be checked to see how his TURBT went. The strange thing about bladder cancer or any cancer or disease is each comes with its own TLA (Three letter (or more) abbreviations) and glossary of terms. So people talk in short hand about tumour types, treatment, procedures etc. It's no different to the IT world where we used to talk in bits and bytes and K and the M and then Tbytes... RAM, VMS, UNIX MBPs etc. Here is the BC one and some links so you can get the whole list.
Apologies if I do go into BC speak - it isn't intentional - just comes with the territory...
I really can hear a lot more this morning and details like this PC keyboard clicking away and the fans on the PCs whirring are really noticeable.
Steve K in the US has had his first set of maintenance and found out just how strange treatment can be, one day you cannot believe that you have had it done and all seems to be quite bearable and the next you are off the scale. I wonder what mine will be like. I'm guessing as I haven't had the letter that it wont be next Monday for me - just as well - not sure I'd feel up to them but probably the 9th February which is another day in my diary as AndyP will have his rigid cystoscopy and be checked to see how his TURBT went. The strange thing about bladder cancer or any cancer or disease is each comes with its own TLA (Three letter (or more) abbreviations) and glossary of terms. So people talk in short hand about tumour types, treatment, procedures etc. It's no different to the IT world where we used to talk in bits and bytes and K and the M and then Tbytes... RAM, VMS, UNIX MBPs etc. Here is the BC one and some links so you can get the whole list.
Apologies if I do go into BC speak - it isn't intentional - just comes with the territory...
Thursday, January 29, 2009
Lunch With Flocky
Was a good lunch out with young Flocky Bicep. We had a nice Curry, chewed the cud about a number of things and had a few beers which was great and it was nice to get out of the house and have a bit of company too.
Whether it was the Curry itself or the beer I don't know but my hearing improved and my ear has been popping and gurgling all evening and it seems that things are getting louder with each pop. Fingers crossed that it continues as I'd really like to get my hearing back and start feeling normal again.
Whether it was the Curry itself or the beer I don't know but my hearing improved and my ear has been popping and gurgling all evening and it seems that things are getting louder with each pop. Fingers crossed that it continues as I'd really like to get my hearing back and start feeling normal again.
Decision Made
I came to the conclusion last night that I needed to relieve the pressures I am putting on myself:
Work - trying to get back to work too early and ending up worse and setting myself back?
University - could I really catch up given that I need to listen to poetry and music to complete assignments and can't hear anything but top range anyway?
Health - I can't do anything about this and so have to live with being ill for a while and accept that as unpleasant as it is having to go and do another year of treatments that that is what needs to happen and I just have to live with it. There's nothing I can do about it.
There's other stuff of course but these three are giving me the challenges. I feel guilty that I am off work and yet I know that I can't go back like this, I am a danger to myself and others. My University Work, which I am getting good marks for and I love, is just not happening for me at the moment and I just cannot concentrate or give it the time it deserves. If it cannot be done properly and I cannot do justice to my studies and use my mind properly to achieve what I want then why on earth do it? And health, that's all I have banged on about these past few weeks. All I can do on that front is keep taking the tablets, keep eating and doing the right things gradually build back my strength etc.
So the big decision was the only one I could have made today that would immediately relieve the pressure and that was to withdraw from my University Course. As much as it pains me to have to do that, it really was the only practical way of easing something that was niggling me. We do a subject a week and to have lost what is now close to 5 weeks work is just too much to catch up on even given a 3 week extension on assignments. I did manage to get one of those in but even so, it was a hard slog. I'll miss it but I know that I would never have been satisfied with just a Pass as I am capable of Merits and Distinctions and my pride alone wouldn't let me scrape in or do work that wasn't up to my standards.
Is it the right decision? Of course it is. Logically it takes a great deal of pressure off me and whilst it is disappointing not to complete this. Another 4 months and I have had it licked, it just means that I can look forward to doing it next year or the year after. There you go. Emotionally, I'm upset a little about it but that will pass and I have spare time back to do with what I want. Maybe there is some value in that?
Work - trying to get back to work too early and ending up worse and setting myself back?
University - could I really catch up given that I need to listen to poetry and music to complete assignments and can't hear anything but top range anyway?
Health - I can't do anything about this and so have to live with being ill for a while and accept that as unpleasant as it is having to go and do another year of treatments that that is what needs to happen and I just have to live with it. There's nothing I can do about it.
There's other stuff of course but these three are giving me the challenges. I feel guilty that I am off work and yet I know that I can't go back like this, I am a danger to myself and others. My University Work, which I am getting good marks for and I love, is just not happening for me at the moment and I just cannot concentrate or give it the time it deserves. If it cannot be done properly and I cannot do justice to my studies and use my mind properly to achieve what I want then why on earth do it? And health, that's all I have banged on about these past few weeks. All I can do on that front is keep taking the tablets, keep eating and doing the right things gradually build back my strength etc.
So the big decision was the only one I could have made today that would immediately relieve the pressure and that was to withdraw from my University Course. As much as it pains me to have to do that, it really was the only practical way of easing something that was niggling me. We do a subject a week and to have lost what is now close to 5 weeks work is just too much to catch up on even given a 3 week extension on assignments. I did manage to get one of those in but even so, it was a hard slog. I'll miss it but I know that I would never have been satisfied with just a Pass as I am capable of Merits and Distinctions and my pride alone wouldn't let me scrape in or do work that wasn't up to my standards.
Is it the right decision? Of course it is. Logically it takes a great deal of pressure off me and whilst it is disappointing not to complete this. Another 4 months and I have had it licked, it just means that I can look forward to doing it next year or the year after. There you go. Emotionally, I'm upset a little about it but that will pass and I have spare time back to do with what I want. Maybe there is some value in that?
This morning and it is all different again
I feel quite good - in fact I do most mornings. I've blown my nose and got some pops and some more hearing back together with associated whistling in my ear. I suppose that's a good sign. I feel clear in my head and just seem to get trouble towards the end of the day and especially the night.
I imagine that I am still, in reality, reeling from having to do another year's worth of maintenance and the disruption that will cause. I am also second thinking about all the others things I do and pressure I put on myself and wondering whether I really need to consider dropping things off of and concentrating on getting fitter and healthier and concentrating on me a bit more?
It would be nice to have two weeks off lying by a pool soaking up some rays and having cold beers arrive at a set frequency. That's not actually going to happen right now but perhaps some such distraction might be useful after my first batch of treatment.
These are all classic signs of depression (there I've said the D word again) and need the usual activities to get rid of them including proper diet, exercise and so on. Of course, given how rough I've been feeling many of the normal things you'd do aren't easily achievable. They might be soon though.
At least there are some small signs this morning that I might actually be recovering although the whistling/ringing in my ears really isn't helping me concentrate too well.
I imagine that I am still, in reality, reeling from having to do another year's worth of maintenance and the disruption that will cause. I am also second thinking about all the others things I do and pressure I put on myself and wondering whether I really need to consider dropping things off of and concentrating on getting fitter and healthier and concentrating on me a bit more?
It would be nice to have two weeks off lying by a pool soaking up some rays and having cold beers arrive at a set frequency. That's not actually going to happen right now but perhaps some such distraction might be useful after my first batch of treatment.
These are all classic signs of depression (there I've said the D word again) and need the usual activities to get rid of them including proper diet, exercise and so on. Of course, given how rough I've been feeling many of the normal things you'd do aren't easily achievable. They might be soon though.
At least there are some small signs this morning that I might actually be recovering although the whistling/ringing in my ears really isn't helping me concentrate too well.
Me Again - A Late Night and
I feel dreadful I can't get to sleep and I almost got into one of my silly little panic attacks again. Heaven alone knows what is wrong with me? I got to thinking that I was never going to be well again and stuff like that so got myself up and dressed in light clothes to keep myself cool as I am burning up again.
I don't know what it is, it is SO unlike me to be quite so negative about things or to being feeling so up and down all the time. It is almost as if I am afraid to go to sleep in case I don't wake up or perhaps I will wake up and feel worse or unable to breathe properly again.
It makes me annoyed when I haven't control over the situation and I know that these things aren't sensible but it seems like my head is all messed up. I'm beating myself up because I am not at work but I know that I shouldn't be going in. I know that I am not 100% - probably not even 50% and I'm coming around to thinking that I should perhaps just drop loads of things that I'm pressurising myself to do - do I really need to try and do this studying when my head isn't taking it in and I can't hear the audios - I mean I'm doing Poetry and music in the next few weeks and I can't hear the stuff to learn what I have to. GGGGrrrr :-)
I just want to be well again and I don't feel well and I can't get much enthusiasm up for doing anything and on and on it goes. The biggest rut you have to climb out of is the rut you are in of course, but I don't see the way out at the moment.
It is very unsatisfying and I'm powerless to help myself to sort it out at the moment, I don't have the answers and I appear to have lost a huge chunk of my self confidence too. Where is the guy who proudly sported his "I'm not dead yet!" Tee Shirt when he was diagnosed and has met all these challenges and been through all of this stuff to sort out his Bladder Cancer? Looks like he's run away and is hiding behind to sofa!
I know I'm bumping along the bottom and I know that things will get better and that they will take as long as they take but if you are not used to being "ill" then you just can't believe how ill you actually get. Maybe I'm still not owning up to how ill I am?
Anyway, whatever it is and whatever spin I put on it, it still keeps me up late at night and into the early hours, it still upsets me and sets me off worrying. If I am like this now I can't imagine how I would cope with something more serious than this. The feeling of terror and the crushing feelings of claustrophobia really are unpleasant and I'm feeling this even though I can actually breathe OK.
I'm sure I'll be OK soon once I get to normal temperature again and once I am breathing normally and bang some sense and common sense back into my thinking.
I think it is more unnerving because I'm not normally like this, which makes it more worrying and you just spiral downwards from there :-)
These things teach you how you take your good health for granted.
I don't know what it is, it is SO unlike me to be quite so negative about things or to being feeling so up and down all the time. It is almost as if I am afraid to go to sleep in case I don't wake up or perhaps I will wake up and feel worse or unable to breathe properly again.
It makes me annoyed when I haven't control over the situation and I know that these things aren't sensible but it seems like my head is all messed up. I'm beating myself up because I am not at work but I know that I shouldn't be going in. I know that I am not 100% - probably not even 50% and I'm coming around to thinking that I should perhaps just drop loads of things that I'm pressurising myself to do - do I really need to try and do this studying when my head isn't taking it in and I can't hear the audios - I mean I'm doing Poetry and music in the next few weeks and I can't hear the stuff to learn what I have to. GGGGrrrr :-)
I just want to be well again and I don't feel well and I can't get much enthusiasm up for doing anything and on and on it goes. The biggest rut you have to climb out of is the rut you are in of course, but I don't see the way out at the moment.
It is very unsatisfying and I'm powerless to help myself to sort it out at the moment, I don't have the answers and I appear to have lost a huge chunk of my self confidence too. Where is the guy who proudly sported his "I'm not dead yet!" Tee Shirt when he was diagnosed and has met all these challenges and been through all of this stuff to sort out his Bladder Cancer? Looks like he's run away and is hiding behind to sofa!
I know I'm bumping along the bottom and I know that things will get better and that they will take as long as they take but if you are not used to being "ill" then you just can't believe how ill you actually get. Maybe I'm still not owning up to how ill I am?
Anyway, whatever it is and whatever spin I put on it, it still keeps me up late at night and into the early hours, it still upsets me and sets me off worrying. If I am like this now I can't imagine how I would cope with something more serious than this. The feeling of terror and the crushing feelings of claustrophobia really are unpleasant and I'm feeling this even though I can actually breathe OK.
I'm sure I'll be OK soon once I get to normal temperature again and once I am breathing normally and bang some sense and common sense back into my thinking.
I think it is more unnerving because I'm not normally like this, which makes it more worrying and you just spiral downwards from there :-)
These things teach you how you take your good health for granted.
Maybe it was just being run down
Someone reckoned that I must have been well and truly thwacked at the Hospital and just really low to pick up these colds and to still feel unwell.
I suppose that is a real possibility. I didn't have the greatest experience in the Hospital and it's been a month that things have just happened to me. I feel a right wreck and even now still don't feel at all well. I still can't hear properly, I still have blocked up nose and whilst I don't have the thumping in my ear I still have tinnitus! I am doing my Vitamin C and pro and prebiotics and eating properly etc. I just don't seem to be shaking this off and what recovery there is, is taking ages and ages.
I'm getting quite worried about it really as I want to be fit to get back to work and yet I just don't feel well enough to go. I'm certain sitting on the train with all the coughs and sniffs that are normally on there wont do me any good either!
I suppose another couple of days and see how I am if it is still this bad I will go and see the Doctor again and see what we can do to build me back up. I certain that if I have the BCG treatment in this state I'll suffer more than I would normally as I am run down.
I suppose that is a real possibility. I didn't have the greatest experience in the Hospital and it's been a month that things have just happened to me. I feel a right wreck and even now still don't feel at all well. I still can't hear properly, I still have blocked up nose and whilst I don't have the thumping in my ear I still have tinnitus! I am doing my Vitamin C and pro and prebiotics and eating properly etc. I just don't seem to be shaking this off and what recovery there is, is taking ages and ages.
I'm getting quite worried about it really as I want to be fit to get back to work and yet I just don't feel well enough to go. I'm certain sitting on the train with all the coughs and sniffs that are normally on there wont do me any good either!
I suppose another couple of days and see how I am if it is still this bad I will go and see the Doctor again and see what we can do to build me back up. I certain that if I have the BCG treatment in this state I'll suffer more than I would normally as I am run down.
Wednesday, January 28, 2009
A good night out
It was a great night out - I was ribbed mercilessly by my friends but the main thing was that I felt so much better when I got home. A few beers, lots of laughs and I was cheered up no end.
This morning I feel a bit better but am still deaf in the one ear and - I have no idea how I have this pain between my shoulder blades unless Mrs. F. was hitting me there or inserting a knife last night :-)
I feel an utter wreck at the moment but I am sure that things can only get better. Whether I will be fit enough this week to go back to work I don't know. With my hearing this bad I am not so sure.
This morning I feel a bit better but am still deaf in the one ear and - I have no idea how I have this pain between my shoulder blades unless Mrs. F. was hitting me there or inserting a knife last night :-)
I feel an utter wreck at the moment but I am sure that things can only get better. Whether I will be fit enough this week to go back to work I don't know. With my hearing this bad I am not so sure.
Tuesday, January 27, 2009
I am really looking forward to going out tonight
Just up to my local Pub in a few minutes to meet my old school chums. I've known these guys for 40 years or more and we have a great time once a month reminiscing, taking the mickey out of each other telling jokes and just having a good evening out.
I am so looking forward to it as I really do need cheering up and a boost to my system and these guys will do that without a doubt. I remember moving down this way from London and these guys being some of the first I met. My parents to this day say what a nice group of friends I had.
So - a few beers, some laughs, crikey we all need some of that as I think we are all going to feel the squeeze this year and hopefully refreshed batteries for tomorrow. It is amazing how feeling good in itself is good medicine.
I am so looking forward to it as I really do need cheering up and a boost to my system and these guys will do that without a doubt. I remember moving down this way from London and these guys being some of the first I met. My parents to this day say what a nice group of friends I had.
So - a few beers, some laughs, crikey we all need some of that as I think we are all going to feel the squeeze this year and hopefully refreshed batteries for tomorrow. It is amazing how feeling good in itself is good medicine.
Patience is a virtue
And something I need to get used to. I cannot believe that I am still deaf but not too bad. I suppose it will now come back gradually but once again the tinnitus is back which is just so annoying. I am going to go out tonight and meet up with my school chums. We normally meet on the second Tuesday but I was too ill and everyone else was disrupted this time too. It should be fun and take my mind off things. It's great to have supportive friends around.
At the moment I'm just sitting here at my PC staring at it and wondering what to do next. I really should get on with my coursework but when I tried that earlier my lack of hearing is making it a bit difficult to grasp the subject properly. I am on poetry and it never was my favourite subject. I would have skipped this module but I have an assignment on it. I listened to the first few tracks and as people's voices kept scrambling in and out of robot speak I gave up it just isn't going to sink in that way!! I think I will just have to give it up as a bad job today and go at it again tomorrow and hope that my ears are working better.
I cannot remember a time when I was just like this and just not 100% - it really is such a bind and it makes doing anything difficult or complex when it isn't.
At the moment I'm just sitting here at my PC staring at it and wondering what to do next. I really should get on with my coursework but when I tried that earlier my lack of hearing is making it a bit difficult to grasp the subject properly. I am on poetry and it never was my favourite subject. I would have skipped this module but I have an assignment on it. I listened to the first few tracks and as people's voices kept scrambling in and out of robot speak I gave up it just isn't going to sink in that way!! I think I will just have to give it up as a bad job today and go at it again tomorrow and hope that my ears are working better.
I cannot remember a time when I was just like this and just not 100% - it really is such a bind and it makes doing anything difficult or complex when it isn't.
Frustration
Having always been someone who does things and is out and about and worked (and played) really hard the past 30 months and the last 6 weeks or so really wears thin. I'm still here today, sat at my desk with my ear buzzing and hissing away. I can hear out of it but also have all the background noises to contend with as well.
I'm in that in between stage of being ill. Not quite well enough to return - as I know I'll just end up back here again. I can actually feel that I'm not up for doing more than a few hours work at a time, I do feel weak and I do feel tired.
I've got to give it time to get back to normal (heads them off at the pass by also stating that there is no way I'd ever be normal!!!). Again, it is one of those things that you have to accept. It reminds me of my Father who, a couple of years ago, had a "funny turn" and quite unlike him, we got him to a Doctor, to undertake a series of tests and they shoved a needle and got blood out of him (I was amazed he hates these places more than I do). So after all the tests and all the checks he goes to the GP who informs him that for a man of his age he is fine, Heart OK, BP OK, Cholesterol OK and so on. It is a mystery why he had the "funny turn". Then my Dad tells the GP and my Mum who is sitting beside him that it might have been lifting the 1CWT bag of sand out of the back of the car :-) . The GP then explained calmly to my Dad that he was 73 years old for goodness sake. Dad said he still felt as if he were 30... I still feel that too. There's no way I'm 51 - but I am :-(
Perhaps I'm really not admitting to being older than I think I am, I'm no longer indestructible, no longer as fit and healthy as I used to be and given the length and severity of this cold, no where near as recovered as I felt I was. I suppose I also have to admit that the BC and the treatments have taken it out of me. I suppose thinking back on those Post Cancer Fatigue days might also give me a clue about being run down. It would be churlish to think that having - what - 24 treatments and close to 6 Operations wouldn't have managed to take their toll somehow on me.
It goes back to your way of thinking that the only person who doesn't think that Bladder Cancer is a pretty serious thing to have is ME. If the words are "fighting your cancer" then that is what I've been doing but I've not felt myself getting weaker - I felt that I was getting stronger - this series of colds obviously shows different.
The Frustration is pretty obvious and the way out of it is just hard slog and letting time take its course. I can't see me shaking the cold off for a few more days and I can't see me being fully recovered for quite a while. Just as I am about to recover I'm sure that I'll end up on BCG treatment - that's bound to happen.
Oh well, life and time march on and I ought to attempt to get things done.. It is the last day of my antibiotics for my ear problems. It appears to have worked well enough that I can hear - but I can't hear music and listen to the TV properly as I still have this sounds like a robot hearing. I'll give it a few days more and if it isn't gone I'll have to go back to the Doctors and get something else. The trouble and complication being that BCG and certain antibiotics don't mix so I have to be careful on that front. Also, you shouldn't have a cold when you have the BCGs - this is because the side effects can give Flu like symptoms and you need to be aware of them. If you have already got something like that you could miss anything going wrong.
I see that this is going to - take as long as it takes and I'm just going to have to resign myself to it taking as long as it takes. Not easy for me but I know it is what I should do. It's just frustrating that's all.
I'm in that in between stage of being ill. Not quite well enough to return - as I know I'll just end up back here again. I can actually feel that I'm not up for doing more than a few hours work at a time, I do feel weak and I do feel tired.
I've got to give it time to get back to normal (heads them off at the pass by also stating that there is no way I'd ever be normal!!!). Again, it is one of those things that you have to accept. It reminds me of my Father who, a couple of years ago, had a "funny turn" and quite unlike him, we got him to a Doctor, to undertake a series of tests and they shoved a needle and got blood out of him (I was amazed he hates these places more than I do). So after all the tests and all the checks he goes to the GP who informs him that for a man of his age he is fine, Heart OK, BP OK, Cholesterol OK and so on. It is a mystery why he had the "funny turn". Then my Dad tells the GP and my Mum who is sitting beside him that it might have been lifting the 1CWT bag of sand out of the back of the car :-) . The GP then explained calmly to my Dad that he was 73 years old for goodness sake. Dad said he still felt as if he were 30... I still feel that too. There's no way I'm 51 - but I am :-(
Perhaps I'm really not admitting to being older than I think I am, I'm no longer indestructible, no longer as fit and healthy as I used to be and given the length and severity of this cold, no where near as recovered as I felt I was. I suppose I also have to admit that the BC and the treatments have taken it out of me. I suppose thinking back on those Post Cancer Fatigue days might also give me a clue about being run down. It would be churlish to think that having - what - 24 treatments and close to 6 Operations wouldn't have managed to take their toll somehow on me.
It goes back to your way of thinking that the only person who doesn't think that Bladder Cancer is a pretty serious thing to have is ME. If the words are "fighting your cancer" then that is what I've been doing but I've not felt myself getting weaker - I felt that I was getting stronger - this series of colds obviously shows different.
The Frustration is pretty obvious and the way out of it is just hard slog and letting time take its course. I can't see me shaking the cold off for a few more days and I can't see me being fully recovered for quite a while. Just as I am about to recover I'm sure that I'll end up on BCG treatment - that's bound to happen.
Oh well, life and time march on and I ought to attempt to get things done.. It is the last day of my antibiotics for my ear problems. It appears to have worked well enough that I can hear - but I can't hear music and listen to the TV properly as I still have this sounds like a robot hearing. I'll give it a few days more and if it isn't gone I'll have to go back to the Doctors and get something else. The trouble and complication being that BCG and certain antibiotics don't mix so I have to be careful on that front. Also, you shouldn't have a cold when you have the BCGs - this is because the side effects can give Flu like symptoms and you need to be aware of them. If you have already got something like that you could miss anything going wrong.
I see that this is going to - take as long as it takes and I'm just going to have to resign myself to it taking as long as it takes. Not easy for me but I know it is what I should do. It's just frustrating that's all.
Monday, January 26, 2009
Monday Evening
I went out on Escort duty tonight and MRs. F. - isn't she great - drove me there and picked me up so I wouldn't have to drive my "indulgence". In fact I haven't driven my motor for about 8 weeks or so which is a bit sad as I bought it so I could compensate for getting BC. Piccies below. 
My Indulgence. I bought this between the first and second TURBT and the only regret I really have is that it isn't an automatic as I do notice it in traffic when I have to keep pushing the clutch in especially if I have recently had BCG or an Op. Other than that though, it goes like stink and is probably the 2nd best car I've had. The best was a 2000 GSi 4x4 Vauxhall Cavalier. Lord alone knows how I never lost my licence driving that, it was so fast, held the road as if on rails but more than that - you could never tell how fast you were going until the anti-matter reactor started nudging the red line. The Cat is just effortless and cruises away and I haven't been in a situation yet where it hasn't had the ability to stop, steer or accelerate to do what I wanted.
Anyway, I digress - much as I like driving the cat - I was saying that Mrs. F. Dropped me off and I had a lovely time. I won a litre of Scotch in the raffle - always useful for medicinal purposes only you understand and the company was very pleasant. The food was great, Smoked Mackerel, Roast Beef and all the trimmings (plus seconds), Jam Roly Poly and Custard (which I missed I have to say) and then a cheese board with Stilton, Brie and Farmhouse Cheddar. Mmm - great. As always happens on these sorts of occasions - yesterday Mrs F happened to cook Roast Beef too :-)
Before I went I checked whether or not I could have a beer with the tablets I am taking and, joy of joys, I could have a "moderate" amount of alcohol. So I have had a few pints of beer and a couple of glasses of red wine too with the meal and all in all, I feel great apart from one thing; my hearing is shocking. I thought it was OK and up to going out but in a room full of people I was having real difficulty due to background chatter and noise. On a one-to-one basis it was fine. Later on the deafness returned even more but even so - I have to tell you it was great to be out and about again.
I realise that I am not ready for a whole day out but perhaps a day here or there might be OK. I'm not sure about going up to town in the next few days but I might try later on in the week and see how I get on, even if for half a day. It will be so good to see my work mates again and I am missing them more than I dared thought I would.
My Indulgence. I bought this between the first and second TURBT and the only regret I really have is that it isn't an automatic as I do notice it in traffic when I have to keep pushing the clutch in especially if I have recently had BCG or an Op. Other than that though, it goes like stink and is probably the 2nd best car I've had. The best was a 2000 GSi 4x4 Vauxhall Cavalier. Lord alone knows how I never lost my licence driving that, it was so fast, held the road as if on rails but more than that - you could never tell how fast you were going until the anti-matter reactor started nudging the red line. The Cat is just effortless and cruises away and I haven't been in a situation yet where it hasn't had the ability to stop, steer or accelerate to do what I wanted.
Significant Difference
As today has gone along I've been steadily improving. Sure, my hearing isn't anywhere near back to normal but my whole body feels less constricted and my head is clearing out at last. I was finding it difficult to concentrate on anything that needed brain power and now I can actually set to and do somethings.
I've sorted out the PC and got that cleaned up, backed up and working properly. I've sorted some of my diary and calendar out for the year and I've got a clean desk - well this desk is clear - the other one has a load of paper to be shifted on it!!
At this rate, I could be back to normal in a few days which will be just great. It is amazing how quickly this is coming on. I'm impressed.
I've sorted out the PC and got that cleaned up, backed up and working properly. I've sorted some of my diary and calendar out for the year and I've got a clean desk - well this desk is clear - the other one has a load of paper to be shifted on it!!
At this rate, I could be back to normal in a few days which will be just great. It is amazing how quickly this is coming on. I'm impressed.
My Yearly Planner
I have actually managed to set up my yearly planner and start to populate it with things that I am "meant" to be doing. I have just realised though that I have a potential problem if my treatment starts in the next week or two with a clash on meeting dates.
As treatment is on a Monday it usually takes Monday and Tuesday for me to recover properly. That means that a meeting on a Tuesday afternoon (and I have one of those) may well be a problem for me. I've asked a friend if he can cover for me.
It is surprising just how many things are happening this year and also how many are going to clash with Mondays and Tuesdays.
February looks busy as does May and as soon as I get back to work I have to do quite a bit of work to get things ready for major meetings coming up in April and June - it sounds a long way off but believe me - it soon rattles around.
I'm rocked back on my planning because I've got to go back onto maintenance and I haven't been thinking things through properly but in a way my cold and deafness hasn't allowed me to. Today seems a good day and I'm in a bit of a quandary as to what to do this year. I had great plans to get myself off and doing things and I find myself wanting to make plans but being reticent about doing so. It comes back to knowing when your treatments are going to happen and then when the operations will be and so on. I know I have 3 BCGs coming. In my view they could start next Monday or the Monday after.
Either way there are a series of issues with trying to plan anything although I know that they can move appointments just look at the routine operation I had before Christmas. - it is now over a month since I had that and I still feel like poo. In fact you could almost say it is 6 weeks due to the disruption of being cancelled. You know if you planned a holiday for a week after biopsies or something like that you wouldn't have confidence (now) that you'd enjoy yourself and to my mind, the major thing I need this year are breaks and holidays to recuperate a bit and recharge myself, I feel really run down and out of it. I need to build myself back up again so that the treatments and operations don't knock me about as much and so I can recover faster.
As treatment is on a Monday it usually takes Monday and Tuesday for me to recover properly. That means that a meeting on a Tuesday afternoon (and I have one of those) may well be a problem for me. I've asked a friend if he can cover for me.
It is surprising just how many things are happening this year and also how many are going to clash with Mondays and Tuesdays.
February looks busy as does May and as soon as I get back to work I have to do quite a bit of work to get things ready for major meetings coming up in April and June - it sounds a long way off but believe me - it soon rattles around.
I'm rocked back on my planning because I've got to go back onto maintenance and I haven't been thinking things through properly but in a way my cold and deafness hasn't allowed me to. Today seems a good day and I'm in a bit of a quandary as to what to do this year. I had great plans to get myself off and doing things and I find myself wanting to make plans but being reticent about doing so. It comes back to knowing when your treatments are going to happen and then when the operations will be and so on. I know I have 3 BCGs coming. In my view they could start next Monday or the Monday after.
Either way there are a series of issues with trying to plan anything although I know that they can move appointments just look at the routine operation I had before Christmas. - it is now over a month since I had that and I still feel like poo. In fact you could almost say it is 6 weeks due to the disruption of being cancelled. You know if you planned a holiday for a week after biopsies or something like that you wouldn't have confidence (now) that you'd enjoy yourself and to my mind, the major thing I need this year are breaks and holidays to recuperate a bit and recharge myself, I feel really run down and out of it. I need to build myself back up again so that the treatments and operations don't knock me about as much and so I can recover faster.
A new week and a better outlook
I felt much better this morning than I have done for weeks. Whilst I wasn't as fresh as a daisy I still felt much better and almost, but not quite, had a clear head. I've still got the ringing in my ear and I can still hear pumping noises but it appears to be getting a lot better. It sounds as if someone has let a bowl of Rice Krispies off in my ear :-). There are lots of noises and pops coming through so perhaps it is getting near to a point when the large pop happens and suddenly I can hear again.
Interestingly enough, I can hear the fans on the PCs in my office today which I couldn't yesterday so a marked improvement. I hope it continues.
Interestingly enough, I can hear the fans on the PCs in my office today which I couldn't yesterday so a marked improvement. I hope it continues.
Sunday, January 25, 2009
Jeepers
I was working out roughly how much time I'd have off this year from being ill and treatments and all in all it works out to about 3 months off work!! That is a 1/4 of this year - gulp. Add some holidays to that and - well - I could just show my face next week and probably not see everyone for another couple of months :-)
Strewth.
Strewth.
As I head off into my 3rd week of deafness
I can't even begin to tell you what a bloody misery it has been with my tinnitus giving a high pitched screech in my head all the time and the muffled sound that I can't work out where they come from and the feeling of claustrophobia and being trapped inside my own body. Dreadful few weeks and just added to the way I felt after they banged me about in the Hospital too. Two weeks so far I've had this!
Added to that my electronic equipment committing Harakiri and 2009 has gotten off to a start that I want to forget.
I am due out tomorrow on Escort Duty but I wont touch any beer or wine and will have to be very careful of what I eat as the Antibiotics are also ensuring that what little food I am eating doesn't hang around long!
I am keeping my spirits up though - not sure how I am doing that - and just working my way through it. I actually think that I am taking my own advice in saying it is no use rushing back to work if you are ill and it is no use worrying about it either. What will be will be and where I used to be upset about missing work or anything like that well - what is the worst that can happen? As I've said before "no one dies" so it is OK.
I think it is just so frustrating to be sat here, behind in my University work, repairing PCs when I could be doing something else and so on.
Tomorrow takes me in to week 3 and the last week of January. If I'm brutally honest, I can't see myself being ready to go back to work much before Thursday or Friday and that is if the whole of my body cooperates to let me.
Oh well, thank goodness for the blog to let off a bit of steam now and then.
Added to that my electronic equipment committing Harakiri and 2009 has gotten off to a start that I want to forget.
I am due out tomorrow on Escort Duty but I wont touch any beer or wine and will have to be very careful of what I eat as the Antibiotics are also ensuring that what little food I am eating doesn't hang around long!
I am keeping my spirits up though - not sure how I am doing that - and just working my way through it. I actually think that I am taking my own advice in saying it is no use rushing back to work if you are ill and it is no use worrying about it either. What will be will be and where I used to be upset about missing work or anything like that well - what is the worst that can happen? As I've said before "no one dies" so it is OK.
I think it is just so frustrating to be sat here, behind in my University work, repairing PCs when I could be doing something else and so on.
Tomorrow takes me in to week 3 and the last week of January. If I'm brutally honest, I can't see myself being ready to go back to work much before Thursday or Friday and that is if the whole of my body cooperates to let me.
Oh well, thank goodness for the blog to let off a bit of steam now and then.
The Big PC
Is back online but awfully slow - it needs some TLC. It WAS the power supply - it looked as much and it is the second time I have had to replace it. This one runs 24x7 as it allows the rest of the house to function using printers and other shared resources.
That will take its toll of course especially as the fans drag in dust and muck. Anyway, Mrs. F Dashed down the road after I ordered online and we are almost back to normal. The file system took a bit of a bash by the looks of it and so I am doing some maintenance checks. It didn't help that I needed to do some messing around inside the box but we have now changed the office layout so that the PC sits higher up, the printers are facing the right way around and at least things look a little neater than they did.
It has blown away my chance of doing any University Assignment work today which is a real shame as I wanted to give a good day's effort. Tomorrow will have to do. I can't see myself recovered enough in the morning to go to work - in fact I can't see me being much better before mid to late week in reality.
My hearing, is in the upper ranges at the moment so a scream will really wake me up but any deep notes are still unheard. I tried some more nose blowing and the like but to no avail. I've dropped a note to the office to say I won't be in tomorrow. The rate things are going I wont get back until February and then just in time to start my treatments!
That will take its toll of course especially as the fans drag in dust and muck. Anyway, Mrs. F Dashed down the road after I ordered online and we are almost back to normal. The file system took a bit of a bash by the looks of it and so I am doing some maintenance checks. It didn't help that I needed to do some messing around inside the box but we have now changed the office layout so that the PC sits higher up, the printers are facing the right way around and at least things look a little neater than they did.
It has blown away my chance of doing any University Assignment work today which is a real shame as I wanted to give a good day's effort. Tomorrow will have to do. I can't see myself recovered enough in the morning to go to work - in fact I can't see me being much better before mid to late week in reality.
My hearing, is in the upper ranges at the moment so a scream will really wake me up but any deep notes are still unheard. I tried some more nose blowing and the like but to no avail. I've dropped a note to the office to say I won't be in tomorrow. The rate things are going I wont get back until February and then just in time to start my treatments!
Once more into the hiss dear friends
Last night I descended back into hissing and tinnitus but this morning - once again - on clearing my nose my ear has cracked and popped back into life and I can hear things although they are as if off in the distance. I hope that during the day things get a little better.
I cannot believe the run of illness I am having at the moment. I thought I was reasonably fit and well before Christmas. This morning I still have the rather unpleasant side effects of the antibiotics, my stomach has been making bubbling and churning noises all night and even after some breakfast continues to do so. I feel weak, slightly dizzy (of course with my ear I would have that) and still have a blocked up nose and sinuses although they do seem to be clearing.
So - I'm once again drugged up to the eyeballs and hoping to be well again soon. It seems to be dragging on and on and it is another reason that I am probably not quite my 100% full-on cheerful, optimistic chappy.
I got a lovely letter from my Mum and Dad yesterday enclosing loads of jokes they had cut out of the paper and then, bless their cotton socks, they included a nice cheque so that the 4 of us can go out for a family meal as "we've had a bit of a rough month" so we can go and cheer ourselves up. That was a nice gesture. If anyone else would like to send me money........ :-)
Anyway, on that cheerful note, I now need to go and see what is wrong with my big PC and see if I can sort that out quickly.
I cannot believe the run of illness I am having at the moment. I thought I was reasonably fit and well before Christmas. This morning I still have the rather unpleasant side effects of the antibiotics, my stomach has been making bubbling and churning noises all night and even after some breakfast continues to do so. I feel weak, slightly dizzy (of course with my ear I would have that) and still have a blocked up nose and sinuses although they do seem to be clearing.
So - I'm once again drugged up to the eyeballs and hoping to be well again soon. It seems to be dragging on and on and it is another reason that I am probably not quite my 100% full-on cheerful, optimistic chappy.
I got a lovely letter from my Mum and Dad yesterday enclosing loads of jokes they had cut out of the paper and then, bless their cotton socks, they included a nice cheque so that the 4 of us can go out for a family meal as "we've had a bit of a rough month" so we can go and cheer ourselves up. That was a nice gesture. If anyone else would like to send me money........ :-)
Anyway, on that cheerful note, I now need to go and see what is wrong with my big PC and see if I can sort that out quickly.
Got it again
I can't believe I had another of these mild panic attacks again tonight. I was OK as I caught it just as I got to bed and just got straight up again and went downstairs. The hearing improvements disappeared and in its place has come a further deafness and slight dizziness that goes with it and hence the feeling of being hemmed in.
I've spent an hour or so downstairs and a few moments in the garden and seem to be OK now. I'm absolutely convinced it is to do with the ear problems and the remnants of the cold. I really could do with it being over and done with so I can get back to some level of normality.
I even had a slight attack in the Hospital that meant I had to go and stand outside for 5 minutes to clam down - luckily I was able to sit away from the crowds and enjoy some breeze from an open door - why on earth they keep hospitals at that heat I'll never know.
Anyway - I managed to get some of my University work done today and hope to have a dig at the rest tomorrow and next week. I realised too late that I should have done some more work on the bit I submitted. Hopefully it wont bring my mark down too far. I'm hovering at Merit/Distinction level but really want to be Distinction throughout if I can. Mind you given how I've been this last few weeks I'm surprised I can even concentrate on it.
So - off to bed and see how I get on.
I've spent an hour or so downstairs and a few moments in the garden and seem to be OK now. I'm absolutely convinced it is to do with the ear problems and the remnants of the cold. I really could do with it being over and done with so I can get back to some level of normality.
I even had a slight attack in the Hospital that meant I had to go and stand outside for 5 minutes to clam down - luckily I was able to sit away from the crowds and enjoy some breeze from an open door - why on earth they keep hospitals at that heat I'll never know.
Anyway - I managed to get some of my University work done today and hope to have a dig at the rest tomorrow and next week. I realised too late that I should have done some more work on the bit I submitted. Hopefully it wont bring my mark down too far. I'm hovering at Merit/Distinction level but really want to be Distinction throughout if I can. Mind you given how I've been this last few weeks I'm surprised I can even concentrate on it.
So - off to bed and see how I get on.
Saturday, January 24, 2009
Do you ever get the feeling that
Someone is telling you something?
I got that tonight when I came to get onto my big PC - the one that acts as a server in the house. Dead - no lights on, not the fuse, probably (I hope) the power supply. Of course, could it go at a worse time? No of course not. I have a major mailing to do at the end of the week and bless it, it has just gone and died on me. Luckily I did buy a 1 TB back up drive and have recently backed up the whole thing - which will be useful if I have to do a re-build but I certainly hope it isn't that bad.
If it is just the power supply at least I can change that on Monday and get back to work. But to lose two PCs in a month is that hard luck or what? Crikey if 2009 carries on this way I may as well pack it all in :-)
I worked out that I will probably end up losing most of January's money but in addition, up to 50 days off of work this year, excluding holidays with treatment and hospital appointments. That's a good two months - say three months with January that I won't be billing for.
Oh well - no one died :-) And after all, its only money!!!
I got that tonight when I came to get onto my big PC - the one that acts as a server in the house. Dead - no lights on, not the fuse, probably (I hope) the power supply. Of course, could it go at a worse time? No of course not. I have a major mailing to do at the end of the week and bless it, it has just gone and died on me. Luckily I did buy a 1 TB back up drive and have recently backed up the whole thing - which will be useful if I have to do a re-build but I certainly hope it isn't that bad.
If it is just the power supply at least I can change that on Monday and get back to work. But to lose two PCs in a month is that hard luck or what? Crikey if 2009 carries on this way I may as well pack it all in :-)
I worked out that I will probably end up losing most of January's money but in addition, up to 50 days off of work this year, excluding holidays with treatment and hospital appointments. That's a good two months - say three months with January that I won't be billing for.
Oh well - no one died :-) And after all, its only money!!!
Pop, Pop, Click, Buzz, Pop, Squeak, Hiss
Interesting morning. Blocked nose, so blew and my ear gave off many of the above noises and whilst I can still hear my blood pumping and the tinnitus I can actually hear something out of the ear now as the last pop sort of cleared something up obviously.
Luckily it isn't all back full on volume, I had that once and it was if every one and everything was SHOUTING at me. Going outside and hearing traffic was very frightening.
So that is something and I hope that over the weekend will gradually get better.
It's strange that I should be a little angry or perhaps resentful about having to do another year's worth of treatment. It shows you how your expectations change. I'll have to go back to having my original worst case scenario mindset when I go to see the Consultant. If I go back 30 months then would I have settled for it being 42 months to get better? Of course I would. In fact back in those days I expected that I wouldn't be discharged, if all went well, until I was in my 60s so I need to reset expectations.
I'm probably angry because, once again, I find I need to rely on other people and also that it limits what I want to do. I'm obviously finding "learning to live with it" a bit more difficult than I thought I would but then that because I didn't think I needed to anymore.
A lot of people were concerned that I was seriously depressed about things and I can see that from the tone of my e-mail to them- I used the word bad where perhaps not so good or some other words were more appropriate but at the end of the day I was probably angry and a bit depressed for a day but I have an underlying logical mind and when you look at what is actually presented and not forgetting that I am not an Oncologist or Urologist or a Doctor then it makes sense that to be absolutely sure then a course of maintenance is the best course.
I'll get over it. It looks like my retail therapy has just arrived at the door. I bought myself a six nations Rugby shirt so when I do go down the pub I can wear that.
I also feel the need for my Monty Python Tee Shirt to get an Airing. It has emblazoned my favourite phrase from when I was just diagnosed:
Luckily it isn't all back full on volume, I had that once and it was if every one and everything was SHOUTING at me. Going outside and hearing traffic was very frightening.
So that is something and I hope that over the weekend will gradually get better.
It's strange that I should be a little angry or perhaps resentful about having to do another year's worth of treatment. It shows you how your expectations change. I'll have to go back to having my original worst case scenario mindset when I go to see the Consultant. If I go back 30 months then would I have settled for it being 42 months to get better? Of course I would. In fact back in those days I expected that I wouldn't be discharged, if all went well, until I was in my 60s so I need to reset expectations.
I'm probably angry because, once again, I find I need to rely on other people and also that it limits what I want to do. I'm obviously finding "learning to live with it" a bit more difficult than I thought I would but then that because I didn't think I needed to anymore.
A lot of people were concerned that I was seriously depressed about things and I can see that from the tone of my e-mail to them- I used the word bad where perhaps not so good or some other words were more appropriate but at the end of the day I was probably angry and a bit depressed for a day but I have an underlying logical mind and when you look at what is actually presented and not forgetting that I am not an Oncologist or Urologist or a Doctor then it makes sense that to be absolutely sure then a course of maintenance is the best course.
I'll get over it. It looks like my retail therapy has just arrived at the door. I bought myself a six nations Rugby shirt so when I do go down the pub I can wear that.
I also feel the need for my Monty Python Tee Shirt to get an Airing. It has emblazoned my favourite phrase from when I was just diagnosed:
"I'm Not Dead Yet!"
Friday, January 23, 2009
In The Breakers Yard of Dreams
The lost, abandoned and forgotten dreams lie rotting one on another; decaying, uncared for and piled in the mud and the debris awaiting the merciful jaws of the crusher. Business ideas, plans for a brighter future, get rich schemes, global peace, health, happiness and an end to poverty await the moment they are reduced to fragments and returned from whence they came.
Overhead the rain sodden clouds continue to pour their neck chilling rain onto the hellish scene and the darkness and howling wind chills my soul. A momentary upturn of my face into the teeth of the wind and rain and defiantly I cast my plans for 2009 onto the heap to await their turn to be compacted, fragmented and lost to the black hole where failed dreams lie forever.
Turning my back on the scene, the clouds part and the sun rises majestically over a pleasant green countryside, the breakers yard of dreams has disappeared and in its place are the sights, sounds and smells of a promising spring day. Life is returning, shoots on trees, plants emerging, warmth in the air and longer days strengthen me and I am free to dream and plan again. Life's good, life's OK, I choose to enjoy the day and dream again.
Overhead the rain sodden clouds continue to pour their neck chilling rain onto the hellish scene and the darkness and howling wind chills my soul. A momentary upturn of my face into the teeth of the wind and rain and defiantly I cast my plans for 2009 onto the heap to await their turn to be compacted, fragmented and lost to the black hole where failed dreams lie forever.
Turning my back on the scene, the clouds part and the sun rises majestically over a pleasant green countryside, the breakers yard of dreams has disappeared and in its place are the sights, sounds and smells of a promising spring day. Life is returning, shoots on trees, plants emerging, warmth in the air and longer days strengthen me and I am free to dream and plan again. Life's good, life's OK, I choose to enjoy the day and dream again.
The Day After
Hearing is still way down but gradually - all so gradually - getting better. The Antibiotics are continuing to give me their known side effects. - which doesn't make for feeling a great deal better. The high dosage I have been given most certainly can't be helping in that direction.
I'm in a neutral mood this morning and I still can't quite believe that I've got to go through another two rounds of BCGs and Operations but I'm not anti doing it, I just know that they are out there waiting for me. It is the shock of thinking that it was the last of them and putting them behind you to then find them back on the agenda that is the shock. It is also that, I'd only recently come to terms with the fact that I hated these things and how unpleasant they were as I'd previously suppressed that. The last operation which, let's face it, should have been routine pretty much wrecked my Christmas and New Year and I'm sure that these colds, Flu and ear infection just followed up on how weak I was post op.
So - neutral about things which I sure will change the more I think about it. It is difficult to discuss things when you can't actually hear what people are saying and so after a short time I am sure that I will get a better attitude and be a little more positive than I presently am. I intend to go out with friends when I am better and talk it through with them as they always help me to see reason. At the moment I am in the denial and angry state and know that i shouldn't be but that is just the nature of how your mind works. I know I will change my mind and that it is good news - it just doesn't look that way to me yet.
I'll be watching my attitude change with interest in the coming weeks :-)
I'm in a neutral mood this morning and I still can't quite believe that I've got to go through another two rounds of BCGs and Operations but I'm not anti doing it, I just know that they are out there waiting for me. It is the shock of thinking that it was the last of them and putting them behind you to then find them back on the agenda that is the shock. It is also that, I'd only recently come to terms with the fact that I hated these things and how unpleasant they were as I'd previously suppressed that. The last operation which, let's face it, should have been routine pretty much wrecked my Christmas and New Year and I'm sure that these colds, Flu and ear infection just followed up on how weak I was post op.
So - neutral about things which I sure will change the more I think about it. It is difficult to discuss things when you can't actually hear what people are saying and so after a short time I am sure that I will get a better attitude and be a little more positive than I presently am. I intend to go out with friends when I am better and talk it through with them as they always help me to see reason. At the moment I am in the denial and angry state and know that i shouldn't be but that is just the nature of how your mind works. I know I will change my mind and that it is good news - it just doesn't look that way to me yet.
I'll be watching my attitude change with interest in the coming weeks :-)
Thursday, January 22, 2009
Late evening reflection
Well what a day. Of course the headline news is that I am clear. Not only am I clear, but Steve K in the USA is also clear - good one Steve - it is early on and this is his 2nd all clear which really is great news. This is my 4th clear.
We are both off on slightly different regimes now. I am off on some sort of maintenance gig and Steve will now repeat 3 BCGs and then get another Poke and Peek using a Flexible Cystoscopy and I will have 3 plus another 3 BCGs and get a Rigid Cystoscopy and biopsies - if they are clear I get a repeat performance of that. It seems over here in the UK that they favour full biopsies taken from all over the bladder and in the US they are happy to do a visual. The BCG immunotherapy regime is also different too.
The thing that brought me up suddenly was that I needed to go back on the BCG maintenance for a further year. It really is a belt and braces thing and I'm shocked a bit about that but at the same time, that is what the Consultant says ought to happen and if it increases my chances of staying clear and limiting recurrence then hey, I'm all for it.
I suppose it is difficult to communicate the disappointment to anyone unless you have to go through it or have gone through it but imagine, if you will, having it all explained to you that there isn't anything wrong with you, that they haven't actually detected anything wrong with you in 18 months but they are going to treat you as if you did have something wrong with - just in case.
You don't mess around (I would use a stronger adjective there in other circumstances) with Cancer. If they see it, they cut it out, if it can be annihilated with BCG, they do that. In Bladder Cancer country - it recurs with alarming regularity. It is treatable as you can see. If it is caught early and of the right grade you can be treated and cleared of it. So you can see that there is no other choice than but to go through it all again. It is tiresome, more than that it has continued to wreak havoc with my life in terms of tearing up schedules and making work and other thing unpredictable (Steve K is a Myers Brigg ISTJ I am an INTJ) we need to work in predictable, logical and structured ways as we are the planners and managers in the world. Want to upset me - take away my plans or disrupt how I have mapped things out and you'll do just that.
Today didn't go to plan - that was why I was off balance. Things didn't work out the way I had expected them to and what I had in mind for the rest of the year was torn up and lies in tatters around me.
Logically, I need to have the treatment and my work appears to be supportive about it. From expecting to have 2 days worth of Hospital appointments this year (2 flexi peek and pokes) plus a day for tests, I now have the prospect of 24 days worth of BCGs, 10 to 20 days for operations and "normal" recovery, 2 days for pre-assessments and 2 days for consultation off work. That could mean that this year I would end up taking almost 2 months off work and I've almost had the whole of this month off with the fallout of the last operation and the colds and infection that followed afterwards!
That is what I mean by affecting my year. I was planning on doing a lot of things that I couldn't do last year but dates of treatments and operations etc will now all need to be factored in so it makes for an uncertain life. I suppose I could refuse certain days or get the Hospital to avoid certain things but it all has to fit around my treatments and I don't know when they will start now and hence what the knock on is going to be. I've accepted certain appointments now that will probably have to be cancelled too. It is just the fact that you can't plan and that your time is fragmented and a BCG treatment over three weeks seriously messes things up. For example it takes two days out of each week for three weeks. Generally they are Mondays and Tuesdays and sometime, if you are feeling bad a Wednesday too. Travelling isn't easy straight afterwards and you need to time and plan getting to and from work carefully.
Additionally, after 12 weeks you are meant to have your biopsies and yet it can be 10 or 14 weeks it depends on their timetable.
So - that is really what tends to mess up people like me who are planners - it becomes uncertain and the side effects are uncertain and trying to organise anything is a bit of a hit and miss affair. Having always been one for keeping appointments and keeping to time, having milestone dates and targets and hitting them to suddenly not meet those dates and to have this much uncertainty and doubt is difficult to contend with. If I were totally disorganised it would all be so much better as it would appear normal.
I've done enough reflecting for one night and had quite enough of today. It is one of those days where you just can't quite believe what has happened to you. tomorrow, in the light, it may all appear so much clearer.
We are both off on slightly different regimes now. I am off on some sort of maintenance gig and Steve will now repeat 3 BCGs and then get another Poke and Peek using a Flexible Cystoscopy and I will have 3 plus another 3 BCGs and get a Rigid Cystoscopy and biopsies - if they are clear I get a repeat performance of that. It seems over here in the UK that they favour full biopsies taken from all over the bladder and in the US they are happy to do a visual. The BCG immunotherapy regime is also different too.
The thing that brought me up suddenly was that I needed to go back on the BCG maintenance for a further year. It really is a belt and braces thing and I'm shocked a bit about that but at the same time, that is what the Consultant says ought to happen and if it increases my chances of staying clear and limiting recurrence then hey, I'm all for it.
I suppose it is difficult to communicate the disappointment to anyone unless you have to go through it or have gone through it but imagine, if you will, having it all explained to you that there isn't anything wrong with you, that they haven't actually detected anything wrong with you in 18 months but they are going to treat you as if you did have something wrong with - just in case.
You don't mess around (I would use a stronger adjective there in other circumstances) with Cancer. If they see it, they cut it out, if it can be annihilated with BCG, they do that. In Bladder Cancer country - it recurs with alarming regularity. It is treatable as you can see. If it is caught early and of the right grade you can be treated and cleared of it. So you can see that there is no other choice than but to go through it all again. It is tiresome, more than that it has continued to wreak havoc with my life in terms of tearing up schedules and making work and other thing unpredictable (Steve K is a Myers Brigg ISTJ I am an INTJ) we need to work in predictable, logical and structured ways as we are the planners and managers in the world. Want to upset me - take away my plans or disrupt how I have mapped things out and you'll do just that.
Today didn't go to plan - that was why I was off balance. Things didn't work out the way I had expected them to and what I had in mind for the rest of the year was torn up and lies in tatters around me.
Logically, I need to have the treatment and my work appears to be supportive about it. From expecting to have 2 days worth of Hospital appointments this year (2 flexi peek and pokes) plus a day for tests, I now have the prospect of 24 days worth of BCGs, 10 to 20 days for operations and "normal" recovery, 2 days for pre-assessments and 2 days for consultation off work. That could mean that this year I would end up taking almost 2 months off work and I've almost had the whole of this month off with the fallout of the last operation and the colds and infection that followed afterwards!
That is what I mean by affecting my year. I was planning on doing a lot of things that I couldn't do last year but dates of treatments and operations etc will now all need to be factored in so it makes for an uncertain life. I suppose I could refuse certain days or get the Hospital to avoid certain things but it all has to fit around my treatments and I don't know when they will start now and hence what the knock on is going to be. I've accepted certain appointments now that will probably have to be cancelled too. It is just the fact that you can't plan and that your time is fragmented and a BCG treatment over three weeks seriously messes things up. For example it takes two days out of each week for three weeks. Generally they are Mondays and Tuesdays and sometime, if you are feeling bad a Wednesday too. Travelling isn't easy straight afterwards and you need to time and plan getting to and from work carefully.
Additionally, after 12 weeks you are meant to have your biopsies and yet it can be 10 or 14 weeks it depends on their timetable.
So - that is really what tends to mess up people like me who are planners - it becomes uncertain and the side effects are uncertain and trying to organise anything is a bit of a hit and miss affair. Having always been one for keeping appointments and keeping to time, having milestone dates and targets and hitting them to suddenly not meet those dates and to have this much uncertainty and doubt is difficult to contend with. If I were totally disorganised it would all be so much better as it would appear normal.
I've done enough reflecting for one night and had quite enough of today. It is one of those days where you just can't quite believe what has happened to you. tomorrow, in the light, it may all appear so much clearer.
Oh dear, how sad, NEVER MIND!!
The immortal words of Windsor Davis in "It Ain't 'Alf 'Ot Mum!"
Never mind indeed. Third time cancer free, 18 months without recurrence and that is what I have to remember. The BCGs are tolerable, the operations really aren't good - especially after the last one - perhaps I need to make a fuss about it when I go for pre-assessment this time and see if I can get some sort of dispensation on what they normally do to me.
It's a pernicious disease eating at your body and at your mind and yet I don't have it. I haven't got it, I'm free of cancer and have been for ages. My mind is thinking that there is some sort of set back here or retrograde step and that isn't true. Sure it may not be that you just get scoped once every 3 or 6 months - this way they actually do cytology on you - full biopsies, belt and braces. BCG even though there isn't CIS, TCC or anything else in your bladder.
It is all about preventative maintenance and not about cure. We've done cure, we've had the heavy TURBT and Re-Turbt, the initial BCGs that removed the last traces of the cancer. It is all moving in the right direction. It just isn't moving as fast as I wanted and it was a big surprise that another year's worth of treatment was required. A big surprise.
At least I'll have something to moan and whinge about for the next year then :-)
Yes I know - honestly I do - I've just got to get over it and work out what to do this coming year and re-plan yet again.
Never mind indeed. Third time cancer free, 18 months without recurrence and that is what I have to remember. The BCGs are tolerable, the operations really aren't good - especially after the last one - perhaps I need to make a fuss about it when I go for pre-assessment this time and see if I can get some sort of dispensation on what they normally do to me.
It's a pernicious disease eating at your body and at your mind and yet I don't have it. I haven't got it, I'm free of cancer and have been for ages. My mind is thinking that there is some sort of set back here or retrograde step and that isn't true. Sure it may not be that you just get scoped once every 3 or 6 months - this way they actually do cytology on you - full biopsies, belt and braces. BCG even though there isn't CIS, TCC or anything else in your bladder.
It is all about preventative maintenance and not about cure. We've done cure, we've had the heavy TURBT and Re-Turbt, the initial BCGs that removed the last traces of the cancer. It is all moving in the right direction. It just isn't moving as fast as I wanted and it was a big surprise that another year's worth of treatment was required. A big surprise.
At least I'll have something to moan and whinge about for the next year then :-)
Yes I know - honestly I do - I've just got to get over it and work out what to do this coming year and re-plan yet again.
Mixed Emotions
Laugh or Cry, Be happy or sad, rejoice or be sorrowful?
I really not sure what to do. I should be delighted in a way that I am cancer free, have no pre-cancerous cells at all and everything is great and looks fine and "you're doing well and it is a great step forward".
But - there were atypical cells in there. So to be absolutely sure, I'm back on maintenance - not sure exactly but I heard it as 3 BCGs every 3 months with Rigid Cystoscopies at 6 months and 12 months (deep joy!). I'll find out very soon - I expect that I'll commence in February - it might be 3 BCG followed by 9 week then another 3, 12 weeks later rigid cysto.
So I don't know how I am at the moment. I'm a little bit shocked to tell the truth - I thought that I was out of the woods, off the Roller Coaster and on for a life time of observation. As it is, I've another year added to my sentence.
I know I'll feel differently about this later - it is a bit of a downer but it really isn't - it will teach me for being optimistic though :-)
Oh well, life goes on..
I really not sure what to do. I should be delighted in a way that I am cancer free, have no pre-cancerous cells at all and everything is great and looks fine and "you're doing well and it is a great step forward".
But - there were atypical cells in there. So to be absolutely sure, I'm back on maintenance - not sure exactly but I heard it as 3 BCGs every 3 months with Rigid Cystoscopies at 6 months and 12 months (deep joy!). I'll find out very soon - I expect that I'll commence in February - it might be 3 BCG followed by 9 week then another 3, 12 weeks later rigid cysto.
So I don't know how I am at the moment. I'm a little bit shocked to tell the truth - I thought that I was out of the woods, off the Roller Coaster and on for a life time of observation. As it is, I've another year added to my sentence.
I know I'll feel differently about this later - it is a bit of a downer but it really isn't - it will teach me for being optimistic though :-)
Oh well, life goes on..
Dawn - Judgement Day
Well a bit later than dawn. Had to be shaken awake by Mrs. F. I'm up and showered and knocking back a fist-full of Pills. It is rainy and windy outside which I don't need - I'll walk to the Hospital as there isn't anywhere to park really. I will obviously keep my mouth closed as with these pills rattling around me I could be mistaken as a whistle.
My hearing has improved a little bit. I can certainly hear a little bit from one ear now and a lot more out of the good one. I'll make sure they are aware at the Hospital that they may need to SHOUT at me.
I noted that I had 6 procedures and 24 BCGs in 30 months. So that is something every month for that time if you look at it that way.
In a little over an hour and a half I'll get going off to the Hospital. I was going to take my laptop in to the local PC man on the way to see if they could rescue any of the data but as I can hardly hear myself talking felt it may be difficult to explain what I had done and what I want them to do. Being in the business I don't want them to spend inordinate efforts redoing what I have already done and I also need to set the scene about what I need rescued as most is backed up except a couple of spreadsheets that are pretty important and I hadn't backed them up for a couple of months. If it can't be recovered then it is annoying and means more effort on my part to be creative especially as they were accounts :-)
I've go my list of medication, my questions and I can't really take down a book or music as I need to concentrate on what people are saying so I know when it is "my turn" because of this muffled deafness.
So here I am after a 30 month Roller Coaster Ride wondering whether as it pulls into the terminus this time it will actually stop and let me off? If it does, I can go on one of the lesser rides (please not "It's a Small World")....
More later I'm sure, for the moment I'm looking forward to seeing my Consultant and hearing what the results are and what is going to happen next.
My hearing has improved a little bit. I can certainly hear a little bit from one ear now and a lot more out of the good one. I'll make sure they are aware at the Hospital that they may need to SHOUT at me.
I noted that I had 6 procedures and 24 BCGs in 30 months. So that is something every month for that time if you look at it that way.
In a little over an hour and a half I'll get going off to the Hospital. I was going to take my laptop in to the local PC man on the way to see if they could rescue any of the data but as I can hardly hear myself talking felt it may be difficult to explain what I had done and what I want them to do. Being in the business I don't want them to spend inordinate efforts redoing what I have already done and I also need to set the scene about what I need rescued as most is backed up except a couple of spreadsheets that are pretty important and I hadn't backed them up for a couple of months. If it can't be recovered then it is annoying and means more effort on my part to be creative especially as they were accounts :-)
I've go my list of medication, my questions and I can't really take down a book or music as I need to concentrate on what people are saying so I know when it is "my turn" because of this muffled deafness.
So here I am after a 30 month Roller Coaster Ride wondering whether as it pulls into the terminus this time it will actually stop and let me off? If it does, I can go on one of the lesser rides (please not "It's a Small World")....
More later I'm sure, for the moment I'm looking forward to seeing my Consultant and hearing what the results are and what is going to happen next.
Wednesday, January 21, 2009
Don't think too hard about it
Off to bed, still not got my hearing back but it has improved (if that makes sense?). In other words I can hear more than I could but nowhere near as much as I probably need to.
I am going to try not to think too much about anything tonight and let it wash over me a bit. Tomorrow - well it will bring what it brings and I hope for good things now. I've thrown off the think of the worst thing and you wont be disappointed to actually daring to think it will be OK. I hope that I am right.
At the same time, I'm going to be thinking about Steve K over in the USA who will be having his Poke and Peek tomorrow. It is a slightly different protocol as he is having a flexible cystoscopy but nonetheless, it will be a big day as a good result is to go on to the next course of Immunotherapy. I'm praying that it will be the case.
I've just remembered, or should I say been reminded, what one of the side effects of antibiotics is. Not pleasant - not for publication. I sure hope they are doing their thing and tomorrow will see another improvement. I haven't had the worries about going to bed tonight. I think that things have just relieved enough - certainly the pressure is off my ear drum now that I can get to bed OK.
I hope sweet dreams to follow and a good day tomorrow. Night all...
I am going to try not to think too much about anything tonight and let it wash over me a bit. Tomorrow - well it will bring what it brings and I hope for good things now. I've thrown off the think of the worst thing and you wont be disappointed to actually daring to think it will be OK. I hope that I am right.
At the same time, I'm going to be thinking about Steve K over in the USA who will be having his Poke and Peek tomorrow. It is a slightly different protocol as he is having a flexible cystoscopy but nonetheless, it will be a big day as a good result is to go on to the next course of Immunotherapy. I'm praying that it will be the case.
I've just remembered, or should I say been reminded, what one of the side effects of antibiotics is. Not pleasant - not for publication. I sure hope they are doing their thing and tomorrow will see another improvement. I haven't had the worries about going to bed tonight. I think that things have just relieved enough - certainly the pressure is off my ear drum now that I can get to bed OK.
I hope sweet dreams to follow and a good day tomorrow. Night all...
Less than 24 hours to go
So how did we get here?
1 Visit to the Doctors
1 Flexible Cystoscopy & consultation/diagnosis
1 TURBT and biopsies
1 Intravenous Urogram (IVU) or intravenous Pyelogram (IVP)
1 Re-TURBT and Biopsies
6 BCGs
1 Rigid Cystoscopy
6 BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
7 Consultations + visits to GPs when required.
5 Pre-assessments
Of all the procedures, in three cases I was catheterised overnight or longer - the 2 TURBT for 2 nights and the last Rigid Cystoscopy overnight.
A total of 24 BCG, Immunotherapy Treatments - all full dose and each involves the insertion of a small catheter (no local anaesthetic) to instill the BCG and between 24 and 48 hours side effects. For 6 -8 hours after the procedure, the bathroom at home is treated as a hazardous area and is subjected to bleaching and cleaning procedures after passing the BCG out of your bladder.
Of the side effects I had the first few visits to the Hospital saw me get a nasty series of "heat" rashes from the beds and also that both operations and recoveries were on some of the hottest days of the year. The BCGs varied from nothing to complete agony and searing pain to Flu like symptoms, to bones aching and cramps, fevers and chills and anything in between. However, I was told it would be worse than that so in a way I felt that I'd got away mildly as many never go the full course!!
The Silver lining is that we caught my high blood pressure and I am on treatment for that which in a way, much as I hate drugs of any kind, means that I get checked regularly for that and continue to be monitored - which is no bad thing.
Diet - that has changed a bit but I was never one for fast food or anything other than reasonable balanced diet. I now err more towards vegetables and fruit but I'm not freaky about it but did get so at one point about 18 months ago. Other changes. I try every day to have a pro-biotic and prebiotic and use one of those yoghurt drinks. It helps your immune system and there are some reports that it assists during immunotherapy treatment and hence I started then and haven't stopped.
I've cut down on cholesterol but my score on the door was 4 for that a year ago and I guess it will be less this time.
I have done more exercise but haven't for a while mainly I didn't feel great after the last lot of BCG and set myself back after the previous operation and set myself off bleeding again! I will get back to exercising regularly. When I am not laid up as I am at the moment I walk about 3 miles a day to and from the stations at both ends of my journey.
The list above has been since July 2006 - so 30 months of this. That's an Operation every 5 months. A BCG treatment almost every month (24 of them).
It feels to me to have been full on and yet between each set of treatments was a 3month gap before the operation. During Maintenance you had 3 BCGs, followed by 9 weeks in between, then another 3 then the 3 month wait for the operation. It is strange though how it feels you are never free from it and it is great when you can forget it and distract yourself from it.
The amazing thing is that it isn't painful to have bladder cancer. What IS painful are the things they do to you. Painful and uncomfortable. In addition, there's the bit that "messes with your head". That isn't painful but it does contribute towards the way you feel and respond to cancer. If you have a broken leg - you can see it, it is in plaster or some sort of cast, you hobble around on crutches, they take the cast off, you can walk and after a while you forget about it. Your mind doesn't keep wondering if the break in your leg is going to spread across your body or that it is going to get worse, or that they will have to cut your leg off or build you a new leg. In a way that is the added ingredient you don't get with common ailments that you get with cancer.
So - where is all this leading? Well just a retrospective of how I got from there to here and what tomorrow means. I'm hoping it means no more of the above although I imagine it means flexible cystoscopies for a long period to come to follow up and make sure all is OK.
But here is the rub. I should be clear. If I am, I would have been clear officially since November 2007. Yes, 14 months. Unofficially, I would have been clear for almost 18 months. In Bladder Cancer terms, the longer you are clear, the less chance of a recurrence there is. But - and here is the sobering bit - it can recur, it can recur many years later and even though statically I'm on the good side of those stats - age and effectiveness of treatment and recurrence, I did have a high grade tumour in the first place. A clear tomorrow is a major step forward but I still live with the knowledge that I'll need long term observation and follow up and may not be out of it yet!
1 Visit to the Doctors
1 Flexible Cystoscopy & consultation/diagnosis
1 TURBT and biopsies
1 Intravenous Urogram (IVU) or intravenous Pyelogram (IVP)
1 Re-TURBT and Biopsies
6 BCGs
1 Rigid Cystoscopy
6 BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
3 followed by 3 Maintenance BCGs
1 Rigid Cystoscopy
7 Consultations + visits to GPs when required.
5 Pre-assessments
Of all the procedures, in three cases I was catheterised overnight or longer - the 2 TURBT for 2 nights and the last Rigid Cystoscopy overnight.
A total of 24 BCG, Immunotherapy Treatments - all full dose and each involves the insertion of a small catheter (no local anaesthetic) to instill the BCG and between 24 and 48 hours side effects. For 6 -8 hours after the procedure, the bathroom at home is treated as a hazardous area and is subjected to bleaching and cleaning procedures after passing the BCG out of your bladder.
Of the side effects I had the first few visits to the Hospital saw me get a nasty series of "heat" rashes from the beds and also that both operations and recoveries were on some of the hottest days of the year. The BCGs varied from nothing to complete agony and searing pain to Flu like symptoms, to bones aching and cramps, fevers and chills and anything in between. However, I was told it would be worse than that so in a way I felt that I'd got away mildly as many never go the full course!!
The Silver lining is that we caught my high blood pressure and I am on treatment for that which in a way, much as I hate drugs of any kind, means that I get checked regularly for that and continue to be monitored - which is no bad thing.
Diet - that has changed a bit but I was never one for fast food or anything other than reasonable balanced diet. I now err more towards vegetables and fruit but I'm not freaky about it but did get so at one point about 18 months ago. Other changes. I try every day to have a pro-biotic and prebiotic and use one of those yoghurt drinks. It helps your immune system and there are some reports that it assists during immunotherapy treatment and hence I started then and haven't stopped.
I've cut down on cholesterol but my score on the door was 4 for that a year ago and I guess it will be less this time.
I have done more exercise but haven't for a while mainly I didn't feel great after the last lot of BCG and set myself back after the previous operation and set myself off bleeding again! I will get back to exercising regularly. When I am not laid up as I am at the moment I walk about 3 miles a day to and from the stations at both ends of my journey.
The list above has been since July 2006 - so 30 months of this. That's an Operation every 5 months. A BCG treatment almost every month (24 of them).
It feels to me to have been full on and yet between each set of treatments was a 3month gap before the operation. During Maintenance you had 3 BCGs, followed by 9 weeks in between, then another 3 then the 3 month wait for the operation. It is strange though how it feels you are never free from it and it is great when you can forget it and distract yourself from it.
The amazing thing is that it isn't painful to have bladder cancer. What IS painful are the things they do to you. Painful and uncomfortable. In addition, there's the bit that "messes with your head". That isn't painful but it does contribute towards the way you feel and respond to cancer. If you have a broken leg - you can see it, it is in plaster or some sort of cast, you hobble around on crutches, they take the cast off, you can walk and after a while you forget about it. Your mind doesn't keep wondering if the break in your leg is going to spread across your body or that it is going to get worse, or that they will have to cut your leg off or build you a new leg. In a way that is the added ingredient you don't get with common ailments that you get with cancer.
So - where is all this leading? Well just a retrospective of how I got from there to here and what tomorrow means. I'm hoping it means no more of the above although I imagine it means flexible cystoscopies for a long period to come to follow up and make sure all is OK.
But here is the rub. I should be clear. If I am, I would have been clear officially since November 2007. Yes, 14 months. Unofficially, I would have been clear for almost 18 months. In Bladder Cancer terms, the longer you are clear, the less chance of a recurrence there is. But - and here is the sobering bit - it can recur, it can recur many years later and even though statically I'm on the good side of those stats - age and effectiveness of treatment and recurrence, I did have a high grade tumour in the first place. A clear tomorrow is a major step forward but I still live with the knowledge that I'll need long term observation and follow up and may not be out of it yet!
That's a bit better
Slept in a bit this morning and the noise level and pain in my ear is down about 50% from yesterday. What a relief. I hope that continues throughout today as it has made me feel much better. If anything I am more blocked up and congested than before - perhaps that is part of it. I am continuing to take the other bits and pieces to get rid of the cold elements especially the cough.
Well this time tomorrow I will be waiting to for my appointment and hoping that I hear (no pun intended) good news. If I do, I wont be able to go and immediately celebrate but will have to store that up for after this course of antibiotics are over.
I have no doubt that the outcome of that will allow me to move on and perhaps all these things in my head will stop spinning around and begin to form something cohesive?
Well this time tomorrow I will be waiting to for my appointment and hoping that I hear (no pun intended) good news. If I do, I wont be able to go and immediately celebrate but will have to store that up for after this course of antibiotics are over.
I have no doubt that the outcome of that will allow me to move on and perhaps all these things in my head will stop spinning around and begin to form something cohesive?
Tuesday, January 20, 2009
I had to hang around tonight as well
I held back going to bed and just chilled out watching the box for a few hours. That seems to have helped me just get a little calmer than I was earlier. It is pretty peculiar I have to say. I seem to have got some slight improvement in my ear - certainly a small pressure reduction but also seem to have a bit more congestion as well.
I'm off to bed now and see how these drugs take on my hearing problem. I could do with having some hearing on Thursday when I go to the Hospital for my appointment.
I'm off to bed now and see how these drugs take on my hearing problem. I could do with having some hearing on Thursday when I go to the Hospital for my appointment.
Somethings not published for the moment
I wrote a Huge blog last night called "concerning mental frailty" and I realised that it was going to be too long and too complex to justify just the one blog or the sheer amount of detail I crammed into it. It sits with a number of other unfinished blogs in the system ready to go out one day when I feel up to it.
In addition it went really deep into the dark side of my mind and what I'd felt over these past few years how the various stages of the disease and treatment, work and losing my job etc., and how each of these affected me.
I was having a very bad time last night - obviously! I just got fed up with being ill (all the time). I suppose I was pretty shook up and frightened too that I'd had the panic attack / claustrophobia - if you have never suffered from it, believe me it really shakes you up. It is like a sort of rising panic and you can't find your way out and that makes you really twitchy. Luckily I know myself what to do and got up and made the situation OK for myself but it did bring back bad feelings and memories. Getting out is always the thing I need to do. Wherever I am I know where the doors are located, the fire exits and so on. I had to get out of my bedroom as there was only one door and I opened the window but that wasn't enough and I had to get down stairs where there were more options. Spooky isn't it - but somehow there are three exits from the ground floor and that's OK!
Luckily it hasn't brought back the very dark and very nasty stuff of 18 months to 2 years ago. The "Dark Dog" stuff which was just horrible and - say it as it was - just downright depressing and black,terrible, frightening and a really nasty place to go.
So - in a way I'm glad I didn't inflict the big scary blog on you or go into some of the stuff I don't want to tell you about for the moment. I just reread it myself and can see why I didn't publish it.
I'm a bit stir crazy being trapped inside my head with this deafness - lord alone knows how Beethoven or anyone else must feel with it - mine is temporary but it must be terrible to live like this all the time.
You can see why some people liken cancer to post traumatic stress disorder when you get moments like this. As usual it rally helped to write it all down last night but exploring the emotions and the fears at such an intimate level may perhaps take me some time to do.
At least I feel a hell of a lot better tonight than I did last night. That was really scary...
In addition it went really deep into the dark side of my mind and what I'd felt over these past few years how the various stages of the disease and treatment, work and losing my job etc., and how each of these affected me.
I was having a very bad time last night - obviously! I just got fed up with being ill (all the time). I suppose I was pretty shook up and frightened too that I'd had the panic attack / claustrophobia - if you have never suffered from it, believe me it really shakes you up. It is like a sort of rising panic and you can't find your way out and that makes you really twitchy. Luckily I know myself what to do and got up and made the situation OK for myself but it did bring back bad feelings and memories. Getting out is always the thing I need to do. Wherever I am I know where the doors are located, the fire exits and so on. I had to get out of my bedroom as there was only one door and I opened the window but that wasn't enough and I had to get down stairs where there were more options. Spooky isn't it - but somehow there are three exits from the ground floor and that's OK!
Luckily it hasn't brought back the very dark and very nasty stuff of 18 months to 2 years ago. The "Dark Dog" stuff which was just horrible and - say it as it was - just downright depressing and black,terrible, frightening and a really nasty place to go.
So - in a way I'm glad I didn't inflict the big scary blog on you or go into some of the stuff I don't want to tell you about for the moment. I just reread it myself and can see why I didn't publish it.
I'm a bit stir crazy being trapped inside my head with this deafness - lord alone knows how Beethoven or anyone else must feel with it - mine is temporary but it must be terrible to live like this all the time.
You can see why some people liken cancer to post traumatic stress disorder when you get moments like this. As usual it rally helped to write it all down last night but exploring the emotions and the fears at such an intimate level may perhaps take me some time to do.
At least I feel a hell of a lot better tonight than I did last night. That was really scary...
That would make sense then
I saw the Doctor - funny how if you really listen carefully you can hear your name despite the inane chatter, doors opening and closing, phones and buzzers (what do those buzzers actually do?) often found in a doctor's waiting room.
Very nice Doctor too. Took one look at my ears and was pleased that they were both clear of wax. Then said that my ear drum is bulging outwards - yes BULGING and red and that he had no doubt it was an ear infection and put me on very strong anti biotics. He reckons a week to get some sort of improvement. I have to keep up with all the other stuff I am doing, pain killers, anti inflammatory and nasal sprays, steam inhalation etc.
As Spike Milligan said "I told you I was Ill"
Blast - let's hope the drugs work - mind you antibiotics = no beer or alcohol either :-(
Very nice Doctor too. Took one look at my ears and was pleased that they were both clear of wax. Then said that my ear drum is bulging outwards - yes BULGING and red and that he had no doubt it was an ear infection and put me on very strong anti biotics. He reckons a week to get some sort of improvement. I have to keep up with all the other stuff I am doing, pain killers, anti inflammatory and nasal sprays, steam inhalation etc.
As Spike Milligan said "I told you I was Ill"
Blast - let's hope the drugs work - mind you antibiotics = no beer or alcohol either :-(
Off to the Doctors
Enough is surely enough and this cold hasn't cleared itself by the designated time and so far has proved stubborness itself to everything thrown at it. I'm off to the Doctors in a few hours time to see if it can be fixed once and for all.
I don't particularly like Doctors, Hospitals etc but I need to get this sorted out and over and done with. I cannot have another night like last night.
I eventually felt good enough to get to bed about 1:40 or so. At least that was a bonus - I was worried that I'd be up all night or need to go wandering the streets for an hour or two.
Let's see what happens later.
I don't particularly like Doctors, Hospitals etc but I need to get this sorted out and over and done with. I cannot have another night like last night.
I eventually felt good enough to get to bed about 1:40 or so. At least that was a bonus - I was worried that I'd be up all night or need to go wandering the streets for an hour or two.
Let's see what happens later.
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