I am having a very up and down time at the moment some days I am OK others I am dreading the coming event. It is less than two weeks away now - it is only a week to assessment and by this time next week I hope that that is over. At least I won't have to go through assessment and having the Op a few minutes after they finished that.
Whilst I am in this mood I ought to get on and work my way through my list of "to dos" which still doesn't appear to be getting any less.
Tuesday, March 06, 2007
After a long battle
What does that mean? We use very aggressive words with cancer, you beat cancer, you defeat it, you win the battle, you battle cancer, you fight it.
I always feel for the obituary that says "after a long battle against cancer" It implies that cancer somehow "won". Pedantic semantics I may have but it is an unusual choice of words but what else could they be?
Cancer is an enemy
Cancer is aggressive
Cancer needs to be tackled aggressively
I don't think I am in a battle. I feel that I am approaching recovery different to say, a cold. You have to change your lifestyle and so you "manage" the disease and try to ensure that it never gets to a point of managing you. Whatever control you do have is focused on beating the disease so you can see how quickly I slipped back into the fighting vernacular.
Anyway, the next time someone had a long battle against cancer you'll perhaps give some thought to how long that battle was and what it meant to that person.
I always feel for the obituary that says "after a long battle against cancer" It implies that cancer somehow "won". Pedantic semantics I may have but it is an unusual choice of words but what else could they be?
Cancer is an enemy
Cancer is aggressive
Cancer needs to be tackled aggressively
I don't think I am in a battle. I feel that I am approaching recovery different to say, a cold. You have to change your lifestyle and so you "manage" the disease and try to ensure that it never gets to a point of managing you. Whatever control you do have is focused on beating the disease so you can see how quickly I slipped back into the fighting vernacular.
Anyway, the next time someone had a long battle against cancer you'll perhaps give some thought to how long that battle was and what it meant to that person.
Dream Time revisited
It can be quite a shock waking up these days to find that actually you aren't just coming to in your hospital bed but you are actually at home. The dreams are all about the hospital but not on anything specific at the moment. Mostly this is reliving things and complaining about blunt cannulas and replaying different scenarios of the outcome. The Surgeon comes over and says hello but that is it. They smile at me and it looks good news. However path results take a couple of weeks so it isn't going to be over the day after the Op.
Perhaps the dream will pick up a bit in intensity nearer the time. Despite knowing what awaits me my mind is still occasionally running wild about it.
This time, as I understand it, they will knock me out and will take a series of biopsies around the bladder. Last time they were going to do this but actually re-re sectioned and resected another area and did some retrogrades and then took biopsies as well!
These biopsies will be around the original area of the tumour and also at intervals around the bladder. These are then mounted in a wax substance and thinly sliced and examined under a microscope. They can then determine what affect the BCG has had and what the next steps may be.
Best case is that I get to go on to maintenance therapy and get 6 monthly hits and 3 weeks a time (I believe). At 6 months afterwards a flexible cystoscopy and if all looks OK then another 3 lots of BCG and so on gradually the intervals increase but the dosage I believe stays the same.
The more often you have these BCGs apparently the more severe the reaction can get and some people don't finish the course. I really haven't had such a severe reaction that I'd have wanted to give up the course but I did get a seriously bad reaction to one that shook me and I can imagine if I had had a series of those I might have thought differently.
Perhaps the dream will pick up a bit in intensity nearer the time. Despite knowing what awaits me my mind is still occasionally running wild about it.
This time, as I understand it, they will knock me out and will take a series of biopsies around the bladder. Last time they were going to do this but actually re-re sectioned and resected another area and did some retrogrades and then took biopsies as well!
These biopsies will be around the original area of the tumour and also at intervals around the bladder. These are then mounted in a wax substance and thinly sliced and examined under a microscope. They can then determine what affect the BCG has had and what the next steps may be.
Best case is that I get to go on to maintenance therapy and get 6 monthly hits and 3 weeks a time (I believe). At 6 months afterwards a flexible cystoscopy and if all looks OK then another 3 lots of BCG and so on gradually the intervals increase but the dosage I believe stays the same.
The more often you have these BCGs apparently the more severe the reaction can get and some people don't finish the course. I really haven't had such a severe reaction that I'd have wanted to give up the course but I did get a seriously bad reaction to one that shook me and I can imagine if I had had a series of those I might have thought differently.
Another person I know with Lung Cancer
I heard tonight that someone else I know has lung cancer. That is three in as many years and two this year alone.
I wonder whether it is an "age" thing - I remember being told that you know you are getting old when your friends and acquaintances start dying.
It could be that I am getting to that age where my peer group are beginning to get cancer, serious illness and dying. Not trying to put too much of a downer on proceedings you understand. I think there is also a fair amount of being sensitive to people with cancer. There is a"not just me then" attitude. Also and perhaps a it more disturbing is ranking your cancer and severity against them. It is only natural to compare and I keep coming up with an answer that mine isn't as serious as theirs. However, it probably is, it is just (thankfully) I am not on chemotherapy, I haven't lost my hair and (hopefully) things are getting under control.
I'm meeting up with the person I now know has bladder cancer and who is on maintenance therapy - he will have completed his latest course and so I can see how he got on. He did have a very bad turn with the BCG once. Far worse than the turn I had. However, he is three or four years on from his original diagnosis which I remember being quite something. I knew it was cancer but not how bad it was. So that will be tomorrow - or in fact looking at the time later today.
Right - must dash - better get some sleep.
I wonder whether it is an "age" thing - I remember being told that you know you are getting old when your friends and acquaintances start dying.
It could be that I am getting to that age where my peer group are beginning to get cancer, serious illness and dying. Not trying to put too much of a downer on proceedings you understand. I think there is also a fair amount of being sensitive to people with cancer. There is a"not just me then" attitude. Also and perhaps a it more disturbing is ranking your cancer and severity against them. It is only natural to compare and I keep coming up with an answer that mine isn't as serious as theirs. However, it probably is, it is just (thankfully) I am not on chemotherapy, I haven't lost my hair and (hopefully) things are getting under control.
I'm meeting up with the person I now know has bladder cancer and who is on maintenance therapy - he will have completed his latest course and so I can see how he got on. He did have a very bad turn with the BCG once. Far worse than the turn I had. However, he is three or four years on from his original diagnosis which I remember being quite something. I knew it was cancer but not how bad it was. So that will be tomorrow - or in fact looking at the time later today.
Right - must dash - better get some sleep.
Monday, March 05, 2007
Connecting the dots
All I need now is confirmation that I can disappear from my employer's radar, hand back the equipment which would make it difficult to contact me and to free up a third of my desk and allowing me to draw a line under that.
I have some work to get on with, well three concurrent bits of work and I need to concentrate on those. This would allow me to do that. I can then sort out my plans and get to work free from the encumbrances of the bits and pieces I have been doing.
That would tie in the dots about winding up my employment, setting up the business again and earning some part time money through that. so that would be work.
Then there are the dots in the insurance claim. Gee 5 months that has been dragging on for and I'm still not sure what to make of that. It would be nice to connect that one and not have that to worry about.
I suppose get the 19th out of the way as well. I've got to hope that it is good news and that I'll get stuck into the observation and bcg maintenance regime. That would join those dots up.
If all three could come together then perhaps I can get some control back into my life. I can also plan this holiday that I haven't had since - 2005! That was the last one in Summer 2005!
I am wondering whether to take myself off on my own - I'm pretty good at that and have travelled extensively on business on my own and made the best of it. Sometimes it can be difficult - taking a photo of yourself always looks sad :-)
Anyway, I do hope that these loose ends can just get tidied up quickly and I can get on my way again.
I have some work to get on with, well three concurrent bits of work and I need to concentrate on those. This would allow me to do that. I can then sort out my plans and get to work free from the encumbrances of the bits and pieces I have been doing.
That would tie in the dots about winding up my employment, setting up the business again and earning some part time money through that. so that would be work.
Then there are the dots in the insurance claim. Gee 5 months that has been dragging on for and I'm still not sure what to make of that. It would be nice to connect that one and not have that to worry about.
I suppose get the 19th out of the way as well. I've got to hope that it is good news and that I'll get stuck into the observation and bcg maintenance regime. That would join those dots up.
If all three could come together then perhaps I can get some control back into my life. I can also plan this holiday that I haven't had since - 2005! That was the last one in Summer 2005!
I am wondering whether to take myself off on my own - I'm pretty good at that and have travelled extensively on business on my own and made the best of it. Sometimes it can be difficult - taking a photo of yourself always looks sad :-)
Anyway, I do hope that these loose ends can just get tidied up quickly and I can get on my way again.
Mainly Successful
I think that was it. I've handed over all of the document sets along with whatever knowledge that isn't in the file systems. Everyone seemed OK with what I gave them and I've given assurances that they can contact me should there be any problems.
I've completed a note back to the boss and hopefully we can arrange to get the PC and equipment handed back so that I can walk away from it at last. Like many of these things - trying to get a clean break point is always difficult and this - which I thought would be easier than most - is still a little difficult to extract myself from.
I've completed a note back to the boss and hopefully we can arrange to get the PC and equipment handed back so that I can walk away from it at last. Like many of these things - trying to get a clean break point is always difficult and this - which I thought would be easier than most - is still a little difficult to extract myself from.
Last bit of work for employers
I think today could mark the last piece of work I have to do for my old employers. I'm going to walk them through all of the documentation I have left them (my legacy) and make sure they know what it is, what state of readiness it is in and so on.
Hopefully that will be an end to that, I can hand back the laptop and can put the whole thing behind me. It is baggage that I just don't want, after all I was made redundant and that is fine but to carry on working for them during the notice period is downright depressing - both parties need to move on.
I'll see if I can get that to happen in the next few weeks and then I can forget being available for them and get on with my own things.
Hopefully that will be an end to that, I can hand back the laptop and can put the whole thing behind me. It is baggage that I just don't want, after all I was made redundant and that is fine but to carry on working for them during the notice period is downright depressing - both parties need to move on.
I'll see if I can get that to happen in the next few weeks and then I can forget being available for them and get on with my own things.
Sunday, March 04, 2007
I think it is fair to say that
I am getting quite wound up now. 2 weeks to go, I know what is going to happen as lets face it - it's the same as before but I won't be in for so long. I find the whole thing totally dehumanising and like being wheeled around in an abattoir.
I think that the worry is whether they'll find anything and what will happen then. It's not something that is cured and it can go one of a couple of ways. The ideal of course is to go onto maintenance - when will that start and finish? If it is bad news then is it something more drastic?
I don't want to wake up with the 4 weeks off work bit again but if that is what it has to be then that is that.
As I've said before the problem is recurrence and that is the worry, they can scrape away, treat and monitor but there is always the possibility that you've got an aggressive little disease and all it wants to do is get you!
That is enough for tonight. I can't imagine I'll be fun to be with for the next couple of weeks, I really notice how scared I feel. I am pretty frightened and I didn't have time to think on the other ones. This time I do and I've known for a long time that I'd have to do this.
No doubt I'll be moaning on about this in the next few weeks so forgive me for that - I keep hearing "Its got to be done" but most people who say it to me don't have to have it done to them.
I think that the worry is whether they'll find anything and what will happen then. It's not something that is cured and it can go one of a couple of ways. The ideal of course is to go onto maintenance - when will that start and finish? If it is bad news then is it something more drastic?
I don't want to wake up with the 4 weeks off work bit again but if that is what it has to be then that is that.
As I've said before the problem is recurrence and that is the worry, they can scrape away, treat and monitor but there is always the possibility that you've got an aggressive little disease and all it wants to do is get you!
That is enough for tonight. I can't imagine I'll be fun to be with for the next couple of weeks, I really notice how scared I feel. I am pretty frightened and I didn't have time to think on the other ones. This time I do and I've known for a long time that I'd have to do this.
No doubt I'll be moaning on about this in the next few weeks so forgive me for that - I keep hearing "Its got to be done" but most people who say it to me don't have to have it done to them.
Stop Talking About it
I wish everyone here would stop talking about the day I am going in. I just get relaxed and forget about it when I get "Do you want me to come in with you?" Sensible enough question but how many times do you have to ask me?
Red Moon
My goodness what a great view we had of the eclipse. It was probably the best one I have ever seen. We have the telescope set up in the back garden, video and ordinary cameras too.
It was well worth waiting up for. Combating the freezing conditions was easy with mugs of hot soup and a nice shot of brandy when I got in.
It was well worth waiting up for. Combating the freezing conditions was easy with mugs of hot soup and a nice shot of brandy when I got in.
Saturday, March 03, 2007
Full Moon at the Eclipse
tonight and I have the telescope out and ready. Not often you'll get to see a clear look at a reddish moon. I'd like to live somewhere away into the country as the light pollution is pretty bad and also most people would probably wonder what on earth I am up to at night with a telescope in my back garden! This is not a small telescope this has a stand and all that - it needs 30 minutes to acclimatise to the temperature and so on.
At least it something we can all do this evening I suppose.
At least it something we can all do this evening I suppose.
Letting off some steam
Yes, I feel like going outside and yelling or screaming for a minute but what will the neighbours think? Situation Normal some of you dear readers may think but no!
I need to go and let off some steam somewhere - not sure where or how yet. The alternative is to go and blacken some eyes or beat the stuffing out of someone or something.
I may just have to up my exercise machine to go for an hour workout instead of my 20 minutes normal and see if I can work it out that way.
If the Rugby is on I could just go and shout at the TV - neat - problem solved!
I need to go and let off some steam somewhere - not sure where or how yet. The alternative is to go and blacken some eyes or beat the stuffing out of someone or something.
I may just have to up my exercise machine to go for an hour workout instead of my 20 minutes normal and see if I can work it out that way.
If the Rugby is on I could just go and shout at the TV - neat - problem solved!
The Dreams are back
Either side of the Operations last time and now this.
Strange stuff. Last night arguing that I wouldn't need to be kept in for four days just for biopsies. It was very strange indeed. Doctor consults his paperwork and nods sagely. I need to take my mind off of it somehow as it tends to surface more times a day than I'd like and always in my dreams.
I can do without the constant reminders about my condition. The term "coming to live with your condition" takes on a different meaning as I feel that I probably haven't still. May be it takes a lot longer to get used to it.
Strange stuff. Last night arguing that I wouldn't need to be kept in for four days just for biopsies. It was very strange indeed. Doctor consults his paperwork and nods sagely. I need to take my mind off of it somehow as it tends to surface more times a day than I'd like and always in my dreams.
I can do without the constant reminders about my condition. The term "coming to live with your condition" takes on a different meaning as I feel that I probably haven't still. May be it takes a lot longer to get used to it.
Friday, March 02, 2007
A bit Deja Vu
This going over old ground and worrying about things (when you can't really do anything about it). Concerns over the insurance and the ability to plan, worries over what the results will be and all that.
I'm not 50 yet and my body decided to pack it in at 49! I feel like I've been filled with some of that contaminated petrol that has been ruining people's cars this week!
I think I will turn in early tonight and see if I can achieve a good night's sleep. I haven't managed that for a long time and I could do with getting some shut eye even if only to allow me to stop this incessant yawning. I realise now that on three occasions over the past week I have been awake at 3 in the morning but still up by 8.
I'm not 50 yet and my body decided to pack it in at 49! I feel like I've been filled with some of that contaminated petrol that has been ruining people's cars this week!
I think I will turn in early tonight and see if I can achieve a good night's sleep. I haven't managed that for a long time and I could do with getting some shut eye even if only to allow me to stop this incessant yawning. I realise now that on three occasions over the past week I have been awake at 3 in the morning but still up by 8.
End of the "Working" week
What a week of ups and downs and changes of fortune. Lots of things have been sorted out but I need to get to the post office - I have loads of envelopes all loaded up ready to go, cheques to be paid in and all sorts of odds and ends to clear up.
I will be glad to get some sort of rest this weekend. Not too much though as I have to complete some planning documents and finish off some minutes of a meeting too.
I will be glad to get some sort of rest this weekend. Not too much though as I have to complete some planning documents and finish off some minutes of a meeting too.
That is what is nagging me
It is the inability to plan anything that annoys me. I can plan to go out next week but beyond the Hospital date then I am stuck as I don't know what will happen next. It puts me out but that really isn't the annoyance either. I could live with that but it also makes it very difficult to go and get a job at the moment. How could I start a job until after we know what the BCG has done or what the next steps are.
Typical Project Manager - Normally I can tame the unknown a bit but at the moment I have no control over my future at all. It's all very disconcerting.
What also happens is that you find it difficult to get motivated to do things and then stay motivated. I have a number of things that I need to do and each time I have to psyche myself up, plan and then run with it and I have to finish it. If I don't I know I will just leave it.
Typical Project Manager - Normally I can tame the unknown a bit but at the moment I have no control over my future at all. It's all very disconcerting.
What also happens is that you find it difficult to get motivated to do things and then stay motivated. I have a number of things that I need to do and each time I have to psyche myself up, plan and then run with it and I have to finish it. If I don't I know I will just leave it.
If I feel good is it a good sign?
Someone said that if you feel good then that is a good sign. I do feel very good and I still need to lose some weight so based on that he reckons that I should be OK. Is he a Dr? No, but he is someone that I'd trust to be right about this.
It is a strange thing as I suppose you cannot feel your internal organs - well I don't think you can. I can't feel my bladder or what it is doing etc. So if there was something going on in there I'm not sure how I'd tell but I'd subscribe to the fact that if something was wrong you would notice it.
I'm still reeling a bit from the nature of the disease and possible high likelihood of recurrence. None of which I like the idea of much. Some people have had a number of TURBTs and some have gotten away with just the one.
It is a strange thing as I suppose you cannot feel your internal organs - well I don't think you can. I can't feel my bladder or what it is doing etc. So if there was something going on in there I'm not sure how I'd tell but I'd subscribe to the fact that if something was wrong you would notice it.
I'm still reeling a bit from the nature of the disease and possible high likelihood of recurrence. None of which I like the idea of much. Some people have had a number of TURBTs and some have gotten away with just the one.
Same for everybody
I suppose the fear of going into Hospital is the same for everyone - not just me. It feels like it is just me. I really can't stand it and find it thoroughly upsetting.
I don't suppose anyone knows someone who actually likes going in then?
I don't suppose anyone knows someone who actually likes going in then?
Confirmation
Letters for Operation and pre-flight checks (assessment) are through. 13th and 19th so at least that is something I suppose.
It still turns me over just thinking about it...
It still turns me over just thinking about it...
Thursday, March 01, 2007
A bit? No - a LOT better
It is always refreshing to meet someone who has a completely different way of looking at the world to you. I enjoy being sold ideas that are well thought out, constructed and well delivered.
Over a few pints of bitter - and some very welcome seafood (you hardly see seafood vendors these days - he was most welcome) I learnt the finer points of business intelligence. What a delight to hear a 25 year old explain in easy terminology and to speak about the sort of returns and the avoidance of risk the approach had as a benefit.
But then, after three pints it didn't matter anyway and we spoke a load of tentacles! (Look up earlier posting for explanation).
Well I am cheered up and we both managed to get all our frustrations and annoyances about work aired! Job done, happier than I was earlier so the day ends well - and just before midnight too!
Over a few pints of bitter - and some very welcome seafood (you hardly see seafood vendors these days - he was most welcome) I learnt the finer points of business intelligence. What a delight to hear a 25 year old explain in easy terminology and to speak about the sort of returns and the avoidance of risk the approach had as a benefit.
But then, after three pints it didn't matter anyway and we spoke a load of tentacles! (Look up earlier posting for explanation).
Well I am cheered up and we both managed to get all our frustrations and annoyances about work aired! Job done, happier than I was earlier so the day ends well - and just before midnight too!
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