You know what it is? The little voice in the back of my head - you know what it is saying?
It is saying "How come, the last three lots of biopsies were clear and yet this one isn't?"
"Are these atypical cells down to the treatment, to the way they did the biopsies (I still reckon the cleaning lady did them!) or are they the beginnings of a recurrence?"
That's the bottom line, that is why I'm a little bit more upset than I probably need to be is that there is the very minutest doubt in my mind that this might be the start of a come back for the Big C. Now before you all rush and tell me it isn't, because it actually isn't, there is no use telling me, you need to speak to the little voice at the back of my head because in the back of everyone's head resides the little voice called doubt, the pessimist, the nuisance maker, the naughty kid in the classroom and all those things rolled into one. A little Sniper, firing off and sowing little seeds of doubt into your sub conscious just when you are about to go to sleep or when you are at your most vulnerable. The little voice tells you - you are going to die or other such niceties :-)
Sometimes the little voice is right and that's why I don't block it out. Sometimes it says that things don't look right, that's too good to be true, it is completely politically incorrect (good for it) and it questions everything and ridicules and challenges most things that I do.
I try not to take too much notice apart from the occasions where it has actually saved me from doing something I may have regretted but at the moment it is quite insistent that why should these results be different from the previous ones unless someone knowing that there wasn't cancer present really went and had a good look.
Mild Atypia it may be but then they use the word Superficial Bladder Cancer and I can assure anyone reading this that it is hardly superficial if you've actually got/had it!!
I think I will have a chat with my Urology Nurse when I next see her or I can e-mail and get an appointment if I am that worried about it. Normally my Urology Nurse will have the answer and she is discussing my case with the Consultant on Monday.
Friday, February 06, 2009
An afternoon full of popping ears
Every few minutes at the moment it is very strange all the pops and gurgling going on inside my head. Crazy times. I hope it settles down. Been in touch with work today and it looks as if my feet will not touch the ground next week there is so much to do.
Must be "something" about my shower
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.
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.
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.
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