Could it be that this blog is just one big ego trip?
I need to go away and think about that. I hate it when my brain does that to me :-)
Saturday, September 20, 2008
Where are all the survivors
Why don't you hear about them?
Steve Kelley makes a good point in this blog I touch on it here and throughout this blog the one thing that Steve has highlighted and that I support is there just isn't enough out there that explains what it is all about and what it is like to have BC. Maybe that book in me ought to become reality - probably next year when there is more news?
I became aware recently that a number of quite inspirational blogs were inspirational as the author was rapidly approaching the end of their lives and had insights into somewhere I don't want to go for a long time.
When I look at the number of people who took the journey with me and were diagnosed around about the same time as me, there are only 2 who are cured, me in almost remission and another who has a recurrence that medically shouldn't happen! All the rest are dead. Gulp! I'm not counting the ones that have been diagnosed recently. there are 3 others and 1 who is terminal. However, hundreds of other people I know are fine.
A lot of Cancers are treatable, a lot of cancers are still in the realms of if you are diagnosed you will need a small miracle to walk away although I do know Lung Cancer survivors but some of these are pretty nasty things and there isn't much you can do.
Where are all the survivors? What are their stories? Is it just like getting Flu and after a while you get over it and that is it? Is it that, dying and suffering a lot are better press? It is difficult to know. I wonder if there is still a stigma attached to being diagnosed with Cancer. I feel it from people when I tell them and many don't know how to talk to you. They are lucid and interesting conversationalist until you mention the big C and then they get tongue tied and awkward.
Don't get me wrong, I'd find it difficult to strike up a conversation with someone who is dying of something, I mean what do you ask them? I'm British so - of course - I can discuss the weather :-) but for all sensible people out in the world - what are you going to say? How long have you got? What does it feel like? Aren't you going to miss your wife and kids? It is difficult n'est pas? So perhaps when people talk to me - "You look great", "How are you feeling?", "You haven't lost your hair?" , "never heard of it!". It isn't that they are being insensitive it is that it isn't within their experience, the only thing they know is that people generally die from cancer. They treat you warily.
The trouble is that people do survive, those who do survive don't tend to be telling everyone, apparently my Grandparents both had two lots of Cancer each and survived. It got my Grandfather eventually but my Uncle told me that - my parents never did, although I do remember vaguely being told something. There isn't a lot out there about surviving, they say it is on the increase and occasionally you get a story - Kylie Minogue, Ewan McGregor, Patrick Swazy etc. What I am talking about though are the massive amount of people who actually survive. Prostate cancer for example is something, if known about you can die with and not from! Bladder Cancer, as long as it isn't invasive you have a good chance of surviving it. You can walk away from many of these and yet for some reason, as Steve rightly says, you cannot find those stories out there and those are the ones you need.
Survival figures are OK but they are just statistics. I am going to generalise here and repeat something I said a long time ago. The places on the Internet where you find the most information and stories about BC are in fact the places you go when you need to tell your story and get an audience. There was nothing uplifting there apart from people's humanity to their fellow sufferers - there was pain and tears and death and disfigurement and it was all in all a depressing (there - I've said it) experience. I wanted to be uplifted, get some hope and try and work out which way was up and help myself to grasp onto something that no one seemed to be able to help me with. What was going to happen? how am I going to feel? What is it like? That is what I needed not "my treatment has gone wrong", "It didn't work for me", "I've got 3 months left to live" and so on.
I now realise that there are other reasons that you don't see such stuff. It isn't good copy and once you are on the road to recovery you don't need the therapy of writing it down anymore. I see it as my own way of getting the baggage that this cruel little disease causes amongst my family and friends and of course what it does to me off of my chest but at the same time to capture it, it sometimes is trivial ramblings, other times it is what actually happens, no reason to imagine that it doesn't hurt, that it isn't degrading to have things shoved up your privates, no reason to believe that some days it is as boring as life can be and that other days you are glad you are alive - just like normal really.
Maybe then that is it. Do many people just treat Cancer as part of anything else that happens to them and treat it as normal, get on with their lives, don't think too deeply about it, don't feel the need to write about it, research it or do anything else?
It appears that I have asked more questions than provided answers on the subject. I really ought to stop writing this and go and do some work.
The title sounds like an Airplane crash - "Where are all the survivors", they have to be out there somewhere, there just aren't many using the Internet - perhaps you are denied broadband access if you get the Big C??
Have a good weekend.
Steve Kelley makes a good point in this blog I touch on it here and throughout this blog the one thing that Steve has highlighted and that I support is there just isn't enough out there that explains what it is all about and what it is like to have BC. Maybe that book in me ought to become reality - probably next year when there is more news?
I became aware recently that a number of quite inspirational blogs were inspirational as the author was rapidly approaching the end of their lives and had insights into somewhere I don't want to go for a long time.
When I look at the number of people who took the journey with me and were diagnosed around about the same time as me, there are only 2 who are cured, me in almost remission and another who has a recurrence that medically shouldn't happen! All the rest are dead. Gulp! I'm not counting the ones that have been diagnosed recently. there are 3 others and 1 who is terminal. However, hundreds of other people I know are fine.
A lot of Cancers are treatable, a lot of cancers are still in the realms of if you are diagnosed you will need a small miracle to walk away although I do know Lung Cancer survivors but some of these are pretty nasty things and there isn't much you can do.
Where are all the survivors? What are their stories? Is it just like getting Flu and after a while you get over it and that is it? Is it that, dying and suffering a lot are better press? It is difficult to know. I wonder if there is still a stigma attached to being diagnosed with Cancer. I feel it from people when I tell them and many don't know how to talk to you. They are lucid and interesting conversationalist until you mention the big C and then they get tongue tied and awkward.
Don't get me wrong, I'd find it difficult to strike up a conversation with someone who is dying of something, I mean what do you ask them? I'm British so - of course - I can discuss the weather :-) but for all sensible people out in the world - what are you going to say? How long have you got? What does it feel like? Aren't you going to miss your wife and kids? It is difficult n'est pas? So perhaps when people talk to me - "You look great", "How are you feeling?", "You haven't lost your hair?" , "never heard of it!". It isn't that they are being insensitive it is that it isn't within their experience, the only thing they know is that people generally die from cancer. They treat you warily.
The trouble is that people do survive, those who do survive don't tend to be telling everyone, apparently my Grandparents both had two lots of Cancer each and survived. It got my Grandfather eventually but my Uncle told me that - my parents never did, although I do remember vaguely being told something. There isn't a lot out there about surviving, they say it is on the increase and occasionally you get a story - Kylie Minogue, Ewan McGregor, Patrick Swazy etc. What I am talking about though are the massive amount of people who actually survive. Prostate cancer for example is something, if known about you can die with and not from! Bladder Cancer, as long as it isn't invasive you have a good chance of surviving it. You can walk away from many of these and yet for some reason, as Steve rightly says, you cannot find those stories out there and those are the ones you need.
Survival figures are OK but they are just statistics. I am going to generalise here and repeat something I said a long time ago. The places on the Internet where you find the most information and stories about BC are in fact the places you go when you need to tell your story and get an audience. There was nothing uplifting there apart from people's humanity to their fellow sufferers - there was pain and tears and death and disfigurement and it was all in all a depressing (there - I've said it) experience. I wanted to be uplifted, get some hope and try and work out which way was up and help myself to grasp onto something that no one seemed to be able to help me with. What was going to happen? how am I going to feel? What is it like? That is what I needed not "my treatment has gone wrong", "It didn't work for me", "I've got 3 months left to live" and so on.
I now realise that there are other reasons that you don't see such stuff. It isn't good copy and once you are on the road to recovery you don't need the therapy of writing it down anymore. I see it as my own way of getting the baggage that this cruel little disease causes amongst my family and friends and of course what it does to me off of my chest but at the same time to capture it, it sometimes is trivial ramblings, other times it is what actually happens, no reason to imagine that it doesn't hurt, that it isn't degrading to have things shoved up your privates, no reason to believe that some days it is as boring as life can be and that other days you are glad you are alive - just like normal really.
Maybe then that is it. Do many people just treat Cancer as part of anything else that happens to them and treat it as normal, get on with their lives, don't think too deeply about it, don't feel the need to write about it, research it or do anything else?
It appears that I have asked more questions than provided answers on the subject. I really ought to stop writing this and go and do some work.
The title sounds like an Airplane crash - "Where are all the survivors", they have to be out there somewhere, there just aren't many using the Internet - perhaps you are denied broadband access if you get the Big C??
Have a good weekend.
Friday, September 19, 2008
Communications Breakdown
A really good track by Led Zep of course but more like the train wreck that is going on around me here.
It is getting to be a strange world of dancing around each other at the moment. I walk into a room, they walk out, they walk in and I walk out. There is no temper or animosity here just the need to get some space and not to fire the snipes in which aren't particularly helpful.
I can't say things are going great and I'm not sure how the weekend will be as "A"s boyfriend is off to University this weekend as are many of her friends. Everything is just a little on edge at the moment and frankly I have no idea how it is going to pan out by the time everyone has stopped dancing around their own particular issues perhaps I will get some indication of what the hell is going on.
I have a massive week coming up and need to be getting on with loads of paperwork, clearing my office and organising people for a major meeting next week. These are things that have just piled up and now are urgent when they didn't need to be and could have been tackled earlier. Oh well, I know what I am doing this weekend. Loads of work and keeping my head down and probably staying in my office the whole time.
It is getting to be a strange world of dancing around each other at the moment. I walk into a room, they walk out, they walk in and I walk out. There is no temper or animosity here just the need to get some space and not to fire the snipes in which aren't particularly helpful.
I can't say things are going great and I'm not sure how the weekend will be as "A"s boyfriend is off to University this weekend as are many of her friends. Everything is just a little on edge at the moment and frankly I have no idea how it is going to pan out by the time everyone has stopped dancing around their own particular issues perhaps I will get some indication of what the hell is going on.
I have a massive week coming up and need to be getting on with loads of paperwork, clearing my office and organising people for a major meeting next week. These are things that have just piled up and now are urgent when they didn't need to be and could have been tackled earlier. Oh well, I know what I am doing this weekend. Loads of work and keeping my head down and probably staying in my office the whole time.
Thursday, September 18, 2008
It isn't over until the Fat Lady sings
No idea where that comes from but it sounded a fun title:
I was asked a number of questions over the past 2 years or so. Here are a few:
Q: Did you think you were going to die?
A: Yes for about 2 or 3 weeks until I went and found the answers to most of the questions that needed answering.
Q: How can you let people stick things up your (Penis/Prick/Todger)?
A: It is a bit like this - what happens if I don't let them? You die!! Simple choice really
Q: Why are you so happy all the time?
A: Because life is too short to be unhappy. Because I am probably cured. Because what is there to be unhappy about - I'm alive. Any variants on the same are acceptable.
Q: How can Cancer be funny?
A: You have to have it to see the funny side. I'm not being disrespectful you do have to laugh at the things that happen. if you didn't you'd cry. I still remember with eye watering clarity kicking my urine collection bag across the ward and then realising it was attached by a pipe to my catheter which was in turn inserted in me. Now it wasn't that funny then but it is now.
Q: Do you think you will die of Bladder Cancer?
A: No I will die when my heart stops working! Actually I don't think it will be BC, maybe another type or some sort of heart problem (although I am on preventative drugs for that). Natural causes like getting old would be preferable.
Q: Aren't you annoyed that you no longer work in the IT world?
A: Don't forget I worked in IT in the Finance world - look what is happening now. Glad I realised that it was a shallow and non honorable towards the end and got out. I sometimes miss the wage packets and all that but I don't think I'll miss the two faced nature of the business these days.
Q: Working for the Third Sector has to be tiresome?
A: No, far from it, it is actually (but don't tell anyone) the best job in the world. Where else do you get to pull kids out of poverty and make sure that they aren't singled out as different. Giving Kids the opportunity to an education is the best work in the world - no it really is. Imagine using all my years of experience to make sure others get a good start in life. The best thing I ever did. I didn't plan it that way either!
Q: Why go for a Degree?
A: Why not. I never got the opportunity when I was young. I've had the goal of getting better. That is almost achieved now - I need another goal to be as stretching as getting better. How about going for a BA (Hons) Degree?
Q: Why do you keep banging on about collateral damage?
A: There is no doubt that I have made new friends through being ill but also, old friends haven't been able to cope with me being ill through whatever reason. Some have drifted away and may drift back. Prejudice is inherent with Cancer (not sure why) and people who haven't got cancer deal with it in different ways. You mustn't forget that people of my age rarely saw anyone survive cancer, or if they did, it came back and got them later. Of course things have improved but your subconscious carries these prejudices around. Back to the point of you'll lose and you'll gain some friends and you'll also not realise but you change yourself and so people wont recognise you for who you used to be and you may lose them through that.
So now think how those who have to live with you all the time react to you changing, you being ill, I'm sure they may have thought I'd die too. What does it do to them and maybe you come out changed and they don't. This is where the collateral damage concerns arise. You can try and minimise it but just think of the strain that it puts the family under. At the time, the last thing I'd be considering is what is my illness doing to them - I am fully concentrated on fighting my own little battles.
Cancer is a physical disease with the capacity to really screw around with your brain :-)
I was asked a number of questions over the past 2 years or so. Here are a few:
Q: Did you think you were going to die?
A: Yes for about 2 or 3 weeks until I went and found the answers to most of the questions that needed answering.
Q: How can you let people stick things up your (Penis/Prick/Todger)?
A: It is a bit like this - what happens if I don't let them? You die!! Simple choice really
Q: Why are you so happy all the time?
A: Because life is too short to be unhappy. Because I am probably cured. Because what is there to be unhappy about - I'm alive. Any variants on the same are acceptable.
Q: How can Cancer be funny?
A: You have to have it to see the funny side. I'm not being disrespectful you do have to laugh at the things that happen. if you didn't you'd cry. I still remember with eye watering clarity kicking my urine collection bag across the ward and then realising it was attached by a pipe to my catheter which was in turn inserted in me. Now it wasn't that funny then but it is now.
Q: Do you think you will die of Bladder Cancer?
A: No I will die when my heart stops working! Actually I don't think it will be BC, maybe another type or some sort of heart problem (although I am on preventative drugs for that). Natural causes like getting old would be preferable.
Q: Aren't you annoyed that you no longer work in the IT world?
A: Don't forget I worked in IT in the Finance world - look what is happening now. Glad I realised that it was a shallow and non honorable towards the end and got out. I sometimes miss the wage packets and all that but I don't think I'll miss the two faced nature of the business these days.
Q: Working for the Third Sector has to be tiresome?
A: No, far from it, it is actually (but don't tell anyone) the best job in the world. Where else do you get to pull kids out of poverty and make sure that they aren't singled out as different. Giving Kids the opportunity to an education is the best work in the world - no it really is. Imagine using all my years of experience to make sure others get a good start in life. The best thing I ever did. I didn't plan it that way either!
Q: Why go for a Degree?
A: Why not. I never got the opportunity when I was young. I've had the goal of getting better. That is almost achieved now - I need another goal to be as stretching as getting better. How about going for a BA (Hons) Degree?
Q: Why do you keep banging on about collateral damage?
A: There is no doubt that I have made new friends through being ill but also, old friends haven't been able to cope with me being ill through whatever reason. Some have drifted away and may drift back. Prejudice is inherent with Cancer (not sure why) and people who haven't got cancer deal with it in different ways. You mustn't forget that people of my age rarely saw anyone survive cancer, or if they did, it came back and got them later. Of course things have improved but your subconscious carries these prejudices around. Back to the point of you'll lose and you'll gain some friends and you'll also not realise but you change yourself and so people wont recognise you for who you used to be and you may lose them through that.
So now think how those who have to live with you all the time react to you changing, you being ill, I'm sure they may have thought I'd die too. What does it do to them and maybe you come out changed and they don't. This is where the collateral damage concerns arise. You can try and minimise it but just think of the strain that it puts the family under. At the time, the last thing I'd be considering is what is my illness doing to them - I am fully concentrated on fighting my own little battles.
Cancer is a physical disease with the capacity to really screw around with your brain :-)
I know I SHOULD be at work
But I was tired and not with it at all this morning. Not the beer, only had a couple, more the brain going into overdrive on a task I now "own" that needs to be sorted pretty quickly.
I have so many silly little things that need to get done that I had the whole lot going around my head overnight and now I am drained thinking about them all.
At least I have a clear way of addressing these and a day at home will straighten many of them out.
I have so many silly little things that need to get done that I had the whole lot going around my head overnight and now I am drained thinking about them all.
At least I have a clear way of addressing these and a day at home will straighten many of them out.
Normality
What is normality? I'm returning to normality someone told me! Hardly, there is little normal left these days. I think it would be a good exercise to go back and look at a before and after and see what things have changed in the past 26 months or so.
I quite like the fact that a number of people at work know and a number don't know what I have been through and that is interesting just to see their reaction and their way of dealing with it. Normal people are generally far less comfortable than those who have had something seriously wrong with them.
I met someone who was uncomfortable watching the Paralympic Games. I wasn't uncofortable about that at all. I'd suggest to you that every one of those athletes puts me to shame as I just had Bladder Cancer. Whatever they had was far more serious than me and what did they do? They went and achieved great things. I was very moved by it but to say it was uncomfortable? I think normal may indeed be defined like that - I need to think about it more to come up with an answer on it. I wonder if people looked or indeed still look at me as being "disabled" and all the baggage that tends to go along with that? I know I was treated differently in a previous job.
Oh well, the beer draws near and this question can wait a bit longer but one worth starting I think. Are people with Cancer looked on with the same prejudices?
The answer should be there shouldn't be any but if I look deep down inside, I'm sure that there are areas that still need a change in attitude.
I quite like the fact that a number of people at work know and a number don't know what I have been through and that is interesting just to see their reaction and their way of dealing with it. Normal people are generally far less comfortable than those who have had something seriously wrong with them.
I met someone who was uncomfortable watching the Paralympic Games. I wasn't uncofortable about that at all. I'd suggest to you that every one of those athletes puts me to shame as I just had Bladder Cancer. Whatever they had was far more serious than me and what did they do? They went and achieved great things. I was very moved by it but to say it was uncomfortable? I think normal may indeed be defined like that - I need to think about it more to come up with an answer on it. I wonder if people looked or indeed still look at me as being "disabled" and all the baggage that tends to go along with that? I know I was treated differently in a previous job.
Oh well, the beer draws near and this question can wait a bit longer but one worth starting I think. Are people with Cancer looked on with the same prejudices?
The answer should be there shouldn't be any but if I look deep down inside, I'm sure that there are areas that still need a change in attitude.
What a day
I surprised myself the sheer volume of work I got through and I don't feel tired and - here is the good bit - my Nephew is coming over to take me out for a beer! Excellent, I'll enjoy that.
This happened last week too as I recall, no doubt it will all catch up with me tomorrow or the day afterwards!
I'm getting worried that I am picking up someone else's work at the moment and keep dropping hints to that person that they shouldn't lose "ownership" of their stuff to me but as much as I hint.....
Perhaps a word in the bosses ear?
Anyway, apart from the normal dashing to the toilet every 45 minutes to an hour everything is under control and I am beginning to lift myself slowly out of the rut.
This happened last week too as I recall, no doubt it will all catch up with me tomorrow or the day afterwards!
I'm getting worried that I am picking up someone else's work at the moment and keep dropping hints to that person that they shouldn't lose "ownership" of their stuff to me but as much as I hint.....
Perhaps a word in the bosses ear?
Anyway, apart from the normal dashing to the toilet every 45 minutes to an hour everything is under control and I am beginning to lift myself slowly out of the rut.
Wednesday, September 17, 2008
Good to get back to work
It was a bad night's sleep but I was up and this job is so good you want to get up and go, I have to feel really bad not to.
I had loads to do today and so was kept busy but boy am I tired now. It is just gone 9 in the evening and I should have finished off some documents but I am really tired and it is taking me ages to drag myself through it. I think I will leave it - at least tomorrow I stand a good chance of getting it done in half the time.
I crashed out three big pieces of work today and another couple tomorrow will see most of my key time critical stuff done. Perhaps I can get a breather and get on with other things. My course starts in two weeks and I need to get ready for that. The office is coming back into some sense of normality apart from my laser printer is being thrashed to death by "A" as she gets up to speed with her coursework.
Whilst I am feeling tired I am feeling different. Upbeat maybe, certainly I am feeling quietly confident and happy that treatment is behind me. Not a great whooping of joy or anything like that as of yet but certainly a gradual and noticeable lifting of the spirits.
All I need now is to get my head back into its old organised mode and I will be really pleased.
I had loads to do today and so was kept busy but boy am I tired now. It is just gone 9 in the evening and I should have finished off some documents but I am really tired and it is taking me ages to drag myself through it. I think I will leave it - at least tomorrow I stand a good chance of getting it done in half the time.
I crashed out three big pieces of work today and another couple tomorrow will see most of my key time critical stuff done. Perhaps I can get a breather and get on with other things. My course starts in two weeks and I need to get ready for that. The office is coming back into some sense of normality apart from my laser printer is being thrashed to death by "A" as she gets up to speed with her coursework.
Whilst I am feeling tired I am feeling different. Upbeat maybe, certainly I am feeling quietly confident and happy that treatment is behind me. Not a great whooping of joy or anything like that as of yet but certainly a gradual and noticeable lifting of the spirits.
All I need now is to get my head back into its old organised mode and I will be really pleased.
Tuesday, September 16, 2008
Procrastination
I'm still not getting anywhere with the procrastination going on in the household. We nearly didn't get a holiday at all with all the messing about going on, messing around at University and the fallout since. "A" has now gone to college but lives at home and the upheaval that has brought about are all causing a little less than a settled and calm home life.
Now there is the round of farewell parties going off as all her friends go to University. OK but coming in at midnight when I have to get up at 5:30 is going to cause a wee bit more friction before the week is out.
Anyway, the next bit of fun is that "C" has signed up for an evening course for the next 17 weeks, mid week which also messes up diary dates and commitments. My course starts in October and I have spent today sorting that out and trying to get dates in the diary and planned. My Operation screws up Christmas - or the lead up to Christmas and potentially all the things I should be involved with, I did expect it to be around 16th December but earlier will mess up a lot of things.
I hope that we get some sort of closure on this soon, it is messing up any plans I may make - it is unsettling and it is time to settle down.
Now there is the round of farewell parties going off as all her friends go to University. OK but coming in at midnight when I have to get up at 5:30 is going to cause a wee bit more friction before the week is out.
Anyway, the next bit of fun is that "C" has signed up for an evening course for the next 17 weeks, mid week which also messes up diary dates and commitments. My course starts in October and I have spent today sorting that out and trying to get dates in the diary and planned. My Operation screws up Christmas - or the lead up to Christmas and potentially all the things I should be involved with, I did expect it to be around 16th December but earlier will mess up a lot of things.
I hope that we get some sort of closure on this soon, it is messing up any plans I may make - it is unsettling and it is time to settle down.
Cure or Remission?
The longer you go clear with bladder cancer the more chance you have to say that you are cured. There are a number of ways to work out "your chances" based on data gleaned from previous cases.
The longer you are clear the better - but it can still recur - and so you don't actually get cured you get remission. If there is anything that nags at the back of your mind it is the possibility that you could get this again and go through the treatments and operations for another cycle. I'd not like to have to do that but - frankly - if it happened - I'd just have to.
I read an article that in reality GPs and Consultants really cannot say the "cure" word because of the above.
I don't think it is anything to worry about but you can see why they follow up so often and continue to have a peek inside on a regular basis. Again, you'd have thought (if you weren't a cancer patient) that after you get the final all clear that is it but, in reality, I'll be getting regular check ups to make sure all is OK. They aren't exactly the most pleasant tests (see my post on flexible cystoscopy and you'll see why) but if they detect a possible recurrence then it is well worth it.
The longer you are clear the better - but it can still recur - and so you don't actually get cured you get remission. If there is anything that nags at the back of your mind it is the possibility that you could get this again and go through the treatments and operations for another cycle. I'd not like to have to do that but - frankly - if it happened - I'd just have to.
I read an article that in reality GPs and Consultants really cannot say the "cure" word because of the above.
I don't think it is anything to worry about but you can see why they follow up so often and continue to have a peek inside on a regular basis. Again, you'd have thought (if you weren't a cancer patient) that after you get the final all clear that is it but, in reality, I'll be getting regular check ups to make sure all is OK. They aren't exactly the most pleasant tests (see my post on flexible cystoscopy and you'll see why) but if they detect a possible recurrence then it is well worth it.
Profile now on here
I thought it about time I switched my profile on - here it is on the right.
I had to kill off some of my other blogs as they were not pleasant - mainly in terms of me ranting on and using it as a flame room. I've killed that site off now. It has served its purpose of allowing me to scream at the world rather than to do that here.
You can also see my other blogs which I haven't really concentrated on.
I had to kill off some of my other blogs as they were not pleasant - mainly in terms of me ranting on and using it as a flame room. I've killed that site off now. It has served its purpose of allowing me to scream at the world rather than to do that here.
You can also see my other blogs which I haven't really concentrated on.
Goodbye
Bleach tablets, latex gloves, anti bacterial scrub, tablets, note pad and pen, stress balls and all the other stuff that got me through the treatments.
The paperwork is in my dedicated drawer of Hospital information - it is a massive file already - a lever arch full! The stress balls have been great as they allow you to take out the tension on those whilst getting instilled with the BCG. It certainly gave me something to do with my hands.
In the time that I have been having these treatments I have almost (not quite) read the three massive volumes of Martin Gilbert's History of the Twentieth Century. I am up to 1994 now but I don't want anymore BCGs to allow me to finish that off. I need to make an effort and finish it soon as my course starts in two weeks time and I will need to concentrate on loads of set books and DVDs etc.
I am feeling quite pleased and a little elated this morning. I had the most amazing dream session last night so many dreams - really weird stuff - as they tend to be - but there was no main theme but it was all high octane stuff, rally cars, fast boats, athletes, skiing - maybe it was all about freedom - who knows?
It feels quite curious to be here and taking the next step towards recovery. Another 12 weeks and an operation for biopsies and then a nail biting wait for results will then take everything close to Christmas and the New Year. It would be nice to think that 2009 could start with good news and a lift some of the clouds of the past 2 1/2 years.
The paperwork is in my dedicated drawer of Hospital information - it is a massive file already - a lever arch full! The stress balls have been great as they allow you to take out the tension on those whilst getting instilled with the BCG. It certainly gave me something to do with my hands.
In the time that I have been having these treatments I have almost (not quite) read the three massive volumes of Martin Gilbert's History of the Twentieth Century. I am up to 1994 now but I don't want anymore BCGs to allow me to finish that off. I need to make an effort and finish it soon as my course starts in two weeks time and I will need to concentrate on loads of set books and DVDs etc.
I am feeling quite pleased and a little elated this morning. I had the most amazing dream session last night so many dreams - really weird stuff - as they tend to be - but there was no main theme but it was all high octane stuff, rally cars, fast boats, athletes, skiing - maybe it was all about freedom - who knows?
It feels quite curious to be here and taking the next step towards recovery. Another 12 weeks and an operation for biopsies and then a nail biting wait for results will then take everything close to Christmas and the New Year. It would be nice to think that 2009 could start with good news and a lift some of the clouds of the past 2 1/2 years.
Monday, September 15, 2008
Not often
That I write on the blog on the day of treatment and this late at night. It has been a bit of a stinging affair but not nearly as bad as it normally is. Now that is last week and this which is strange.
I'm going to take myself off to bed now and hope that this stays as mild as it is now. What a bit of luck, I was expecting a final reminder of what it can be like. Mercifully it is just a mild one. Phew!
I'm going to take myself off to bed now and hope that this stays as mild as it is now. What a bit of luck, I was expecting a final reminder of what it can be like. Mercifully it is just a mild one. Phew!
One Habit I won't be sorry to see go
Is the preparation for today's treatment.
This will start in a minute after writing this blog:
This will start in a minute after writing this blog:
- Tablets to bedside
- Notepad and pen to record events to bedside
- MP3 Player to bedside
- Shower and change into jogging bottoms and casual clothes
- Timer ready
- Bleach tablets and liquid ready
- Latex cleaning gloves ready
- Book in bathroom (you gotta believe it I spend anywhere up to 20 minutes a time sitting around)
- Antiseptic wipes ready
- Bio soap ready
- Auto e-mail responder to on
- Mobile phone set to off
- Phone removed from bedroom
- Gilet nearby in case shivers set in
That is the list I think. It all becomes a routine thing to do and I'll be able to not do any of them after today. Still not sure how I feel about it all at the moment. It will be interesting to see what the reaction is like this week. Last week there was enough to know I'd had it but nowhere near what I was expecting. Fingers crossed for a similar experience this time.
Mixed Feelings
Now that the last treatment is here I am daring to look beyond where I am today and on towards the next stage of my life.
The ups and downs so far though are:
Strange feelings, I won't miss it but at least the bathroom will stop smelling like a swimming pool on a Monday evening.
The ups and downs so far though are:
- You change - those around you don't.
- FUD - Fear Uncertainty, Doubt - will it come back, collateral damage (to relationships).
- Physically less active and loss of stamina (probably short term).
- Mentally - stronger in some areas (tolerance to pain/procedures).
- Mentally - weaker in some areas (emotions shot to ribbons especially when sad things are on. Empathise with people more).
- Mentally - Assertiveness - much more judgemental, quick to retort and shoot those down who show little mindedness and selfishness - not always my best side or most likable I have to say.
- I thought I had the best job in the world when I was diagnosed, in fact I have the best job in the world now.
- I've lost a lot of my organisational and well planned skills - I am not the logical, planner and person on top of everything I was 2 years ago. Now it is a little too chaotic for me.
- Only I want to do things I want to do. I am completely out of tune with those around me.
- I am much more "laid back" at work and they say that nothing is ever a problem to me. Well it isn't. "How hard can things really be?" I just remind myself of what I have been through and there isn't much can be worse apart from something more serious of course.
- Writing it down is good for you - even if it isn't always the 100% of what you feel or even if you tone the language back a bit.
So much has changed in 26 months that I can hardly believe it. This blog will be 2 years old soon. Whether there is some greater plan at work, I know not. I do have a nagging worry that this isn't the end of things - I suppose we all do. The risk of recurrence is always there unless you have surgery and there is the bottom line for me when I think about it. It was still caught early enough to treat it, sure I had some surgery but not a removal of the bladder which would have still arrived at the same result. You don't have cancer.
What nags away is that I may be more susceptible to other cancers and yet, I am physically fit (despite the obvious limitations of my treatment and fatigue problems), I am mentally tough, I don't have colds or other problems with my health - this is the first real problem I have had in 30 years.
The last treatment? It sure is and it lessens the possibilities of anything nasty happening with that. It can be pretty deadly if this goes wrong. I will not miss the whole experience - it wasn't high up on the things I want to do before I die list anyway. I will not miss the side effects which, either I am getting used to or they lessen as there isn't anything to react to inside my bladder. Certainly, the first tow lots of treatment I ever had were really doing their thing. These days, rough as it is, there isn't anywhere near the pain, debris and side effects as there used to be. I hope that is the case today but who knows it might sign off with a bang :-)Strange feelings, I won't miss it but at least the bathroom will stop smelling like a swimming pool on a Monday evening.
Sunday, September 14, 2008
Last one
The last treatment? I hope so, I really do. This time tomorrow it will be over and I hope that I'll be able to look forward to brighter and better things.
Life around the house isn't all peace and harmony at the moment and I doubt that my rather uncompromising responses actually help the situation when all said and done.
None of these things are "life threatening" and are just trivial - as you know, I really cannot take trivial stuff and arguing about nothing. Oh well serious things elsewhere. A friend called, he lost his Father earlier this year and his wife had a very serious stroke leaving her seriously disabled although she continues to make great progress. She now has Breast Cancer and he has lost his job. Life can be downright cruel. What more does the family have to suffer?
Puts our little spats into some sort of context.
Life around the house isn't all peace and harmony at the moment and I doubt that my rather uncompromising responses actually help the situation when all said and done.
None of these things are "life threatening" and are just trivial - as you know, I really cannot take trivial stuff and arguing about nothing. Oh well serious things elsewhere. A friend called, he lost his Father earlier this year and his wife had a very serious stroke leaving her seriously disabled although she continues to make great progress. She now has Breast Cancer and he has lost his job. Life can be downright cruel. What more does the family have to suffer?
Puts our little spats into some sort of context.
Making Up Your Mind
How difficult can it be to work out what you are doing in a month's time, let alone today.
I find that there is a general lack of decisiveness generally but at home, sometimes, it can really drive me nuts. I am trying to get a decisions - any decision about a number of events that are coming up. Do you think I can get anyone to say yes or even no? Of course not!
So trying to plan anything is almost impossible and even if it is planned they sometime change their minds. Maybe, just maybe when they all get back today I'll get some sort of answers. It isn't for lack of trying.
On a sad note, I just heard that my friend's youngest brother was found dead in New Zealand from, as yet, unknown causes. He was feeling ill, got out of his camper van and the owner of the site found him collapsed dead sometime later. How awful.
I find that there is a general lack of decisiveness generally but at home, sometimes, it can really drive me nuts. I am trying to get a decisions - any decision about a number of events that are coming up. Do you think I can get anyone to say yes or even no? Of course not!
So trying to plan anything is almost impossible and even if it is planned they sometime change their minds. Maybe, just maybe when they all get back today I'll get some sort of answers. It isn't for lack of trying.
On a sad note, I just heard that my friend's youngest brother was found dead in New Zealand from, as yet, unknown causes. He was feeling ill, got out of his camper van and the owner of the site found him collapsed dead sometime later. How awful.
Saturday, September 13, 2008
Out soon
Hope I can stay awake. Just had a long snooze in the chair and didn't want to as I missed parts of Qualification for the F1 and MotoGP. Doh!
I'll have to try and ensure that I stay awake this evening.
I'll have to try and ensure that I stay awake this evening.
Psychological Boost
I feel really quite well and apart from a very slight dry throat (it is yet another side effect) I'm really feeling quite upbeat and it has to be a combination of having had such a good reception following my presentation on Thursday and that at that point, possibly more than any other, it laid down who I am and what I can do and set the scene. Finally I fit in at work and they - for the first time - saw me presenting in full flow and emphasising in the right place, inserting the humour and playing the audience. That was good and ego is comfortably been stroked with that. I have that smug smile you wear internally when I think about it.
Then, of course, is Monday. How I really want it to be the very last time I have the BCG instillation and yet when I first started having them and didn't know if they would work I had resigned myself to potentially having a life time of them. Within my grasp now is the very real possibility that this will be the last.
I can't even begin to tell you how good that actually feels. Winning the lottery I suppose, getting a gold medal, maybe? It really is a weight off of me and it does actually feel like that too. I do feel lighter and it is amazing how "light" you feel your body is weighing you down and your arms and torso just feel like they are dragging down your shoulders and your head is down. I have no idea how your body does that but you do really notice it.
I am feeling really upbeat today and just want to get on with things that are lying around in my office here.
At long last I am close enough to the end of the tunnel to be dazzled by the light and make out the walls and details. Better than that, it is near enough to smell the fresh air, see the sunshine beaming in to the portal. Not long now and I can be out there, out of the tunnel, off of the roller coaster and emerge blinking into this new landscape. It will be different from the scenery I saw before I entered but that is no bad thing is it?
I need to cope with a few of the extremes of my changed persona - especially the utter confidence and over talkative bit. I need to work on the accepting that a lot of people are in fact idiots and not get sharp, angry or down right rude to them. I also need to work on this emotion thing. I am still finding that side of things quite difficult to cope with. I have a feeling that I see other people's experiences and sort of tack my experience alongside it. I feel really bad for them but not for myself, sort of surrogate suffering :-) I am sure this will subside over time as, I am certain, will all of the other "side effects" both mental and physical.
It is nice not to have to go back to the despair of a year ago. It is great to be alive and to be able to look forward again. When I consider everything else that has happened and the people I know who haven't made it through the same period it is a bit worrying. Three of us survive, at least 3 died and one who survived now has a recurrence. People get Cancer all the time, perhaps it is me but a LOT of people appear to be getting it, maybe I am just attuned to hearing or filtering out the word Cancer in discussions and in print? They said Chernobyl would take 20 years to get us :-) Crikey I hope it isn't that!
Now to pack away the Cancer baggage and move on to see what will happen in the next chapter at the other end of the tunnel.
Then, of course, is Monday. How I really want it to be the very last time I have the BCG instillation and yet when I first started having them and didn't know if they would work I had resigned myself to potentially having a life time of them. Within my grasp now is the very real possibility that this will be the last.
I can't even begin to tell you how good that actually feels. Winning the lottery I suppose, getting a gold medal, maybe? It really is a weight off of me and it does actually feel like that too. I do feel lighter and it is amazing how "light" you feel your body is weighing you down and your arms and torso just feel like they are dragging down your shoulders and your head is down. I have no idea how your body does that but you do really notice it.
I am feeling really upbeat today and just want to get on with things that are lying around in my office here.
At long last I am close enough to the end of the tunnel to be dazzled by the light and make out the walls and details. Better than that, it is near enough to smell the fresh air, see the sunshine beaming in to the portal. Not long now and I can be out there, out of the tunnel, off of the roller coaster and emerge blinking into this new landscape. It will be different from the scenery I saw before I entered but that is no bad thing is it?
I need to cope with a few of the extremes of my changed persona - especially the utter confidence and over talkative bit. I need to work on the accepting that a lot of people are in fact idiots and not get sharp, angry or down right rude to them. I also need to work on this emotion thing. I am still finding that side of things quite difficult to cope with. I have a feeling that I see other people's experiences and sort of tack my experience alongside it. I feel really bad for them but not for myself, sort of surrogate suffering :-) I am sure this will subside over time as, I am certain, will all of the other "side effects" both mental and physical.
It is nice not to have to go back to the despair of a year ago. It is great to be alive and to be able to look forward again. When I consider everything else that has happened and the people I know who haven't made it through the same period it is a bit worrying. Three of us survive, at least 3 died and one who survived now has a recurrence. People get Cancer all the time, perhaps it is me but a LOT of people appear to be getting it, maybe I am just attuned to hearing or filtering out the word Cancer in discussions and in print? They said Chernobyl would take 20 years to get us :-) Crikey I hope it isn't that!
Now to pack away the Cancer baggage and move on to see what will happen in the next chapter at the other end of the tunnel.
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