Got to Lincoln and had a nice day there and then off to my parents in beautiful sunny weather and we had a good day out on Friday.
Things are moving on a bit and the years are beginning to tell. Still no news from my Consultant so I will write to them and see if I can speed things up a bit.
I'm pretty tired even though I didn't do a lot but then I haven't driven the car for any great distance for quite a while (apart from going on holiday which wasn't a long journey anyway). I was close to 5 hours in the car on Thursday, 2 on Friday and 3 yesterday.
Start of a new and chaotic week here at work. Steve Kelley in the US has survived the first BCG of this session but got a delayed reaction so things started late and finished late. I had a few of those myself when nothing appeared to happen and then in very quick order things changed. Thoughts and prayers for Steve's next two treatments will be great and this Thursday and the next and that will be that batch over for him.
I'm busy as you like here. My colleague isn't well again and I can see us having to get on without him for a fair old time if it continues. That will mean adjusting my workload significantly.
Watch this space I guess.
Monday, September 14, 2009
Thursday, September 10, 2009
How quickly the body/mind forgets
I saw Steve Kelley's blog this morning and he is about to get another 3 BCG treatments (1 a week for the next 3 weeks). Steve hasn't had these for 6 months and so was reviewing his notes and getting himself prepared for the treatment.
It takes a fair amount of courage to mentally prepare yourself for having these treatments and a lot of the routines I used to do were all about building yourself up for the treatment itself and being prepared for the inevitable side effects when you returned home.
Now I can look back and state what a great thing it was as I am clear. I feel well and I feel that the treatment was in no small measure responsible for this. Mind you, try telling yourself that at the time and it is often difficult to be thinking positive thoughts as the nurse inserts a catheter into you to instill the BCG.
But back to the title. Until Steve posted his blog, I really hadn't thought much about the treatments - I am certain that my mind just put that set of experiences in the "Too difficult to deal witth" section of my mind. It brings it all back to me especially the one that really pulled out every side effect in the books. They say that efficacy cannot be measured by the strength of the side effects and yet these first treatments really did a lot in terms of stripping out the old bladder lining and encouraging new non cancerous growth. I still marvel that someone ever considered that sticking BCG in your bladder may have such a profound outcome.
I am also glad that I was young and fit enough to take the side effects too.
I suppose I ought to be glad that the mind puts a lot behind you. When I do get to think back on my time with BC I do realise what I went through and can get upset for myself, more so than I ever did when I lived through all those things.
Anyway, I'm off this morning to go and give a talk about the charity and then I can head off to my parents and spend a few days with them which I am looking forward to.
It takes a fair amount of courage to mentally prepare yourself for having these treatments and a lot of the routines I used to do were all about building yourself up for the treatment itself and being prepared for the inevitable side effects when you returned home.
Now I can look back and state what a great thing it was as I am clear. I feel well and I feel that the treatment was in no small measure responsible for this. Mind you, try telling yourself that at the time and it is often difficult to be thinking positive thoughts as the nurse inserts a catheter into you to instill the BCG.
But back to the title. Until Steve posted his blog, I really hadn't thought much about the treatments - I am certain that my mind just put that set of experiences in the "Too difficult to deal witth" section of my mind. It brings it all back to me especially the one that really pulled out every side effect in the books. They say that efficacy cannot be measured by the strength of the side effects and yet these first treatments really did a lot in terms of stripping out the old bladder lining and encouraging new non cancerous growth. I still marvel that someone ever considered that sticking BCG in your bladder may have such a profound outcome.
I am also glad that I was young and fit enough to take the side effects too.
I suppose I ought to be glad that the mind puts a lot behind you. When I do get to think back on my time with BC I do realise what I went through and can get upset for myself, more so than I ever did when I lived through all those things.
Anyway, I'm off this morning to go and give a talk about the charity and then I can head off to my parents and spend a few days with them which I am looking forward to.
Wednesday, September 09, 2009
Getting ready
Still no news from the Hospital and so I can only assume as it is 4 weeks this Friday that things are OK and they don't need to see me until they can fit me in.
Not sure what to do when I hear the results this time. Last time I was sort of disappointed almost but this time, well, lets see what happens this time. All Clear would be a good set of words to hear. See you in a year would be nice too.
Must get off to bed and get packed ready for tomorrow's sojourn up north...
Not sure what to do when I hear the results this time. Last time I was sort of disappointed almost but this time, well, lets see what happens this time. All Clear would be a good set of words to hear. See you in a year would be nice too.
Must get off to bed and get packed ready for tomorrow's sojourn up north...
Crazy work day
I had to get all the exhibition stand stuff out and off to loading bay, on my own and then it was Grand Lodge day so hundreds of random Masons wandering around the building whilst I was trying to finish off my presentation for tomorrow, prepare all the committee papers and then found out that some finance papers were being worked on when I needed the photocopier and then my chairman came and sat with me for about an hour of pre meeting briefing and eventually we had the committee meeting which just made more work for me!
I wasn't amused. I have just got my stuff together for tomorrow and will be heading off to Lincoln to talk to about 100 Charity Stewards and Almoners and so I need to remind myself to just be slick and to talk slowly as my presentation runs at about 20 minutes at break neck speed and 25 as it should be delivered. It is really good (it is totally different from anything they have ever done before) and it is interesting in that the research I did for this and the talk next week should really make people sit up and take notice. Our charity is in the top 1% of all charities in England and Wales! Wow. We are quite large but have a small staff ratio compared to others so some of this stuff will come as a great surprise to many. I hope that I can implant in their minds just how impressive we are in terms of the work we do.
Things appear to have settled down at the moment - not sure how a 160 mile trip up the motorway will affect me but let's see. Will be great to go and see my folks on the way home and show them I am still alive!
I wasn't amused. I have just got my stuff together for tomorrow and will be heading off to Lincoln to talk to about 100 Charity Stewards and Almoners and so I need to remind myself to just be slick and to talk slowly as my presentation runs at about 20 minutes at break neck speed and 25 as it should be delivered. It is really good (it is totally different from anything they have ever done before) and it is interesting in that the research I did for this and the talk next week should really make people sit up and take notice. Our charity is in the top 1% of all charities in England and Wales! Wow. We are quite large but have a small staff ratio compared to others so some of this stuff will come as a great surprise to many. I hope that I can implant in their minds just how impressive we are in terms of the work we do.
Things appear to have settled down at the moment - not sure how a 160 mile trip up the motorway will affect me but let's see. Will be great to go and see my folks on the way home and show them I am still alive!
Tuesday, September 08, 2009
What a Day
I ended up having some interesting urination issues - blood in the morning a couple of times and not nice - a full on experience - yuk. Followed by a sort of mid day well you can see blood there but it was OK. Just before I went home I passed a small ferry sized clot which really turned me over and then when I got home all was OK again.
Tonight with beer to lubricate the pipes, all signs are gone which has pleased me a lot!
It was another great evening with my friends. You know where you are with your friends and you can get away with many politically incorrect things and laugh at silly stuff and know that we aren't being bad, just enjoying a night out and what today people think are insults (bunch of wet liberals that they are) is actually to do with all the things that hold friends together and keeps us being what we are after 40 years or more.
I thought it was really quite amusing that my "wedding tackle" and bladder and urinary equipment are made fun of and light of in the company of my friends. My friends CAN get away with these "low shots" and none too subtle innuendo. That is what friends do - we laugh at our problems and we make light of some of those things. One of my friends lost his father the week I was diagnosed and yet we worked our way through that and bad as I feel for not attending his funeral we can look on it now that I came out of it and I'm here. His Dad who was such a great friend of mine when I was a very young guy, taught me so much and we all know that had I have been well enough to attend I would have done. Unfortunately it was when I was bleeding all the time and on my way home from Yorkshire, stopping at every service station that the news arrived that he had died.
It is one of my regrets and yet also a big bond between us that as his father died, I was being diagnosed with something as serious as....
It sounds like a serious night but actually we just had a lot of fun and for old people, we seemed to be getting many laughs per minute in!
Tonight with beer to lubricate the pipes, all signs are gone which has pleased me a lot!
It was another great evening with my friends. You know where you are with your friends and you can get away with many politically incorrect things and laugh at silly stuff and know that we aren't being bad, just enjoying a night out and what today people think are insults (bunch of wet liberals that they are) is actually to do with all the things that hold friends together and keeps us being what we are after 40 years or more.
I thought it was really quite amusing that my "wedding tackle" and bladder and urinary equipment are made fun of and light of in the company of my friends. My friends CAN get away with these "low shots" and none too subtle innuendo. That is what friends do - we laugh at our problems and we make light of some of those things. One of my friends lost his father the week I was diagnosed and yet we worked our way through that and bad as I feel for not attending his funeral we can look on it now that I came out of it and I'm here. His Dad who was such a great friend of mine when I was a very young guy, taught me so much and we all know that had I have been well enough to attend I would have done. Unfortunately it was when I was bleeding all the time and on my way home from Yorkshire, stopping at every service station that the news arrived that he had died.
It is one of my regrets and yet also a big bond between us that as his father died, I was being diagnosed with something as serious as....
It sounds like a serious night but actually we just had a lot of fun and for old people, we seemed to be getting many laughs per minute in!
Whew clearing up
That was a relief. Not exactly clear but not claret either. Just a hint of what was there this morning and I'm feeling a little bit better. It does stir you up no matter if you know that it was expected and what it was.
Not a good start to the morning
A bladder full of claret and clots came flying out and the second go wasn't a lot better. That got my attention this morning. It is pretty revolting as you can probably guess but I didn't need that. Mind you it has been three weeks I suppose and that is still time for the wounds to sort themselves out.
I'm going to get ready to go to work but will see how it goes as to how long I stay there. I ought to be lying down flat I think.
I'm going to get ready to go to work but will see how it goes as to how long I stay there. I ought to be lying down flat I think.
Monday, September 07, 2009
No News is
Good news as they say and I still haven't heard back from the Hospital so I can only assume that the results are OK and that they need to see those worse off than I am.
I was interested that 2 years without recurrence may be considered remission. That would be nice to have I think. I can't say that I am exactly where I thought I'd be. I feel that it is all a bit of an anti climax at the moment and that I'm not arriving at some place I had thought I would.
Mind you I've been saying that for years. I am still having the most vivid dreams and they aren't exactly inspiring, they seem to picture a dreary future, caught in a dead end job and not really doing anything coming out and away from BC when I think that all I have learnt and experienced should be helping me do or be something.
I was interested that 2 years without recurrence may be considered remission. That would be nice to have I think. I can't say that I am exactly where I thought I'd be. I feel that it is all a bit of an anti climax at the moment and that I'm not arriving at some place I had thought I would.
Mind you I've been saying that for years. I am still having the most vivid dreams and they aren't exactly inspiring, they seem to picture a dreary future, caught in a dead end job and not really doing anything coming out and away from BC when I think that all I have learnt and experienced should be helping me do or be something.
Sunday, September 06, 2009
Fed up sort of day
I spent most of yesterday on my own and it looks as if I will repeat that today. I have stacks of Admin type work to do and so stuck in front of this computer really is the last thing I wanted.
Next week is going to be busy - even more so because I have to pick up work that isn't mine over the first two days, then have a meeting which will need actions and I'm then out for the last two days of the working week up in Lincoln giving a presentation and then over to see my folks which isn't so bad.
As I am hardly around I need to fit about a weeks worth of work into today so that will be fun!
The flip flop of my moods, I suppose, shouldn't take me by surprise any more but this is me these days, one day I am my usual happy energetic self and the next I have no energy and no real desire to do anything. All my get up and go got up and went.
I still maintain my sense of humour but today it is at its most sardonic and acerbic so it is best not to get in my way on a day like today.
I'm sure I'll be OK later on during the day, it doesn't last long. Having a bad day is just part of the experience; I don't like it and I wonder quite how long it takes those around me to realise that patronising is not the ideal way to make my mood change. In many cases that may well have been the reason it got darker in the first place.
Next week is going to be busy - even more so because I have to pick up work that isn't mine over the first two days, then have a meeting which will need actions and I'm then out for the last two days of the working week up in Lincoln giving a presentation and then over to see my folks which isn't so bad.
As I am hardly around I need to fit about a weeks worth of work into today so that will be fun!
The flip flop of my moods, I suppose, shouldn't take me by surprise any more but this is me these days, one day I am my usual happy energetic self and the next I have no energy and no real desire to do anything. All my get up and go got up and went.
I still maintain my sense of humour but today it is at its most sardonic and acerbic so it is best not to get in my way on a day like today.
I'm sure I'll be OK later on during the day, it doesn't last long. Having a bad day is just part of the experience; I don't like it and I wonder quite how long it takes those around me to realise that patronising is not the ideal way to make my mood change. In many cases that may well have been the reason it got darker in the first place.
Saturday, September 05, 2009
A day on my own
It is 100 years since Girl Guiding was started and so Mrs. F. who runs a thing called Rainbows (pre Brownies) but has been involved in the Guide movement for many years, is off to the 100 year celebrations at Crystal Palace with another 6,999 Guides and leaders. There are events all over the UK. When I was a youngster I was in the honour guard for Lord Mclean (I think) at the Diamond Jubilee also at Crystal Palace.
Both A and L are young leaders in the Guide movement too so another thing to be pleased about as they are both making a contribution to these movements voluntarily. As I also tell them, it is also a useful skill and prospective employers are always interested to know that you actually take some responsibility and not sit on your arse and play on your PlayStation all day!
I have loads of admin work to do so I am sat in my office working my way through that and listening to some old 70s music - if you remember the Strawbs and Lindisfarne - then I am listening via spotify (http://www.spotify.com/) on line which is fun seeing if I can remember all the lyrics. Sad git that I am, I can :-)
As for my health, I'm feeling a lot better but still tired. I feel a little bit sore around my groin area but other than that and the occasional throbbing on the back of my hand - all is well. I still don't have an appointment to see my Consultant. I feel an email to her office coming on if I haven't heard by later this week.
Both A and L are young leaders in the Guide movement too so another thing to be pleased about as they are both making a contribution to these movements voluntarily. As I also tell them, it is also a useful skill and prospective employers are always interested to know that you actually take some responsibility and not sit on your arse and play on your PlayStation all day!
I have loads of admin work to do so I am sat in my office working my way through that and listening to some old 70s music - if you remember the Strawbs and Lindisfarne - then I am listening via spotify (http://www.spotify.com/) on line which is fun seeing if I can remember all the lyrics. Sad git that I am, I can :-)
As for my health, I'm feeling a lot better but still tired. I feel a little bit sore around my groin area but other than that and the occasional throbbing on the back of my hand - all is well. I still don't have an appointment to see my Consultant. I feel an email to her office coming on if I haven't heard by later this week.
Friday, September 04, 2009
Only a 4 day week
But I am tired all the same. It hasn't helped my colleague being off and so I have been playing catch up with his things. everything is a rush at the moment and yet I thought I had most of it pegged. Unfortunately the biggest bottleneck is the boss. He knows it and we did have a laugh today as he actually left us to do some work, we had packed loads of envelopes ready to go when lo and behold, he had to come back and have a look but I reckon it was a wind up.
Next week I am off to Lincoln to do a talk which I am really looking forward to. The whole week is filled with preparing for my committee meeting and then I have to get my presentation sorted out go to Lincoln and deliver that and then go and see my folks which will be nice.
The week after that I am off to another meeting to give a different talk to a Lodge about the 4 main charities (I just work for one of them). All hell breaks lose the week after that as we prepare for our annual forum. It is all good fun but I'm sure if I sit down I will fall asleep tonight in my chair.
Next week I am off to Lincoln to do a talk which I am really looking forward to. The whole week is filled with preparing for my committee meeting and then I have to get my presentation sorted out go to Lincoln and deliver that and then go and see my folks which will be nice.
The week after that I am off to another meeting to give a different talk to a Lodge about the 4 main charities (I just work for one of them). All hell breaks lose the week after that as we prepare for our annual forum. It is all good fun but I'm sure if I sit down I will fall asleep tonight in my chair.
Thursday, September 03, 2009
FANTASTIC News for Steve
A great piece of news for Steve in the US as he is all clear and his 4th Judgement Day means 3 more BCGs and another tick in the box to keeping clear of Bladder Cancer. It is 15 months for Steve and 28 months or so for me.
It never gets easy to go and have these as there is always a nag at the back of your mind about what they might find but thanks to everyone for thoughts, prayers and whatever you managed to cross today.
I had a nice day, a good meal, curiously enough with a really nice man who originally came from Manhattan - he is a Shriner which is almost unheard of over here but he hopes to be setting up that venerable institution here in the UK and Europe. It was interesting to hear how much these guys do over in the US, Mexico and Canada and the difference their 18 Hospitals make. I'm looking forward to meeting him again soon.
I am really pleased that Steve's results are good though and that the ongoing treatment is doing its thing.
It never gets easy to go and have these as there is always a nag at the back of your mind about what they might find but thanks to everyone for thoughts, prayers and whatever you managed to cross today.
I had a nice day, a good meal, curiously enough with a really nice man who originally came from Manhattan - he is a Shriner which is almost unheard of over here but he hopes to be setting up that venerable institution here in the UK and Europe. It was interesting to hear how much these guys do over in the US, Mexico and Canada and the difference their 18 Hospitals make. I'm looking forward to meeting him again soon.
I am really pleased that Steve's results are good though and that the ongoing treatment is doing its thing.
Wednesday, September 02, 2009
Steve's Judgment Day
3rd September 2009 and Steve Kelley is about to have another Judgment Day. This involves a Cystoscope inspection and if that looks good, a further course of BCG.
It would seem strange to say make it clear so I can have the treatment - if you know what having the treatment is like but actually, that is just what Steve needs to hear so that he can move on to the next base and take the next step in his recovery.
Steve and I have never actually met or spoken and yet I have this really good feeling that we would hit it off brilliantly. For a first, all cancer survivors have a unique bond with their fellow survivors and also those warriors who may not be as lucky as us. Unwritten rules and we "just know" what we have all been through and what we have achieved. Secondly, sense of humour and sense of stoicism about what we have, how we deal with it and also camaraderie in as much as we both blog about what it means to survive.
We both tackle things differently, we both write differently about it but I am really buoyed by having other sufferers touch base and share their stories and experiences and our unique club (which none of us sought to become a member of voluntarily) holds some wonderful anecdotes and experiences which give hope that this vile, bully of a disease can eventually be defeated.
If you pray - please do, if you subscribe to fingers crossed then keep them so on the 3rd September. I will be at a meeting of like minded people enjoying a nice lunch and comradeship tomorrow when - I guess - Steve will be being examined. I will ensure that I raise a fair number of glasses during that time :-)
I still haven't heard when they want me to go in and see the consultant - no news being good news - I can only imagine that I am on the slow back burner of appointments - if it was serious - they'd have seen me before now (they did early on).
It would seem strange to say make it clear so I can have the treatment - if you know what having the treatment is like but actually, that is just what Steve needs to hear so that he can move on to the next base and take the next step in his recovery.
Steve and I have never actually met or spoken and yet I have this really good feeling that we would hit it off brilliantly. For a first, all cancer survivors have a unique bond with their fellow survivors and also those warriors who may not be as lucky as us. Unwritten rules and we "just know" what we have all been through and what we have achieved. Secondly, sense of humour and sense of stoicism about what we have, how we deal with it and also camaraderie in as much as we both blog about what it means to survive.
We both tackle things differently, we both write differently about it but I am really buoyed by having other sufferers touch base and share their stories and experiences and our unique club (which none of us sought to become a member of voluntarily) holds some wonderful anecdotes and experiences which give hope that this vile, bully of a disease can eventually be defeated.
If you pray - please do, if you subscribe to fingers crossed then keep them so on the 3rd September. I will be at a meeting of like minded people enjoying a nice lunch and comradeship tomorrow when - I guess - Steve will be being examined. I will ensure that I raise a fair number of glasses during that time :-)
I still haven't heard when they want me to go in and see the consultant - no news being good news - I can only imagine that I am on the slow back burner of appointments - if it was serious - they'd have seen me before now (they did early on).
Tuesday, September 01, 2009
Nothing like a show of blood to get my attention
In a way I had an inkling that it was about to happen as there is a very slight tingling sensation and you kind of know what is about to happen. Even so - it wasn't nice when it did happen but it was just one clot and the associated port coloured urine to go with it. It always unsettles you because it is just so unnatural to see it.
They realised that something had happened but in fact worse was to occur as my colleague had the opposite trouble and was retaining urine and ended up at A&E again being catheterised which was a relief for him. He didn't get septicemia this time but even so - he needs to go talk to his consultant tomorrow about these recurrences.
What that means is that I may end up taking on even more work if he is out of action and I hardly need that as I have plenty of work as it is now.
I'm not at all comfortable with life, the universe and everything at the moment. I don't know quite why that should be? I suppose that I am bound to feel like that a lot in these coming months as I work out what everything means now that I appear to be getting better etc.
Jazz night tomorrow - which will be nice apart from the appalling weather.
They realised that something had happened but in fact worse was to occur as my colleague had the opposite trouble and was retaining urine and ended up at A&E again being catheterised which was a relief for him. He didn't get septicemia this time but even so - he needs to go talk to his consultant tomorrow about these recurrences.
What that means is that I may end up taking on even more work if he is out of action and I hardly need that as I have plenty of work as it is now.
I'm not at all comfortable with life, the universe and everything at the moment. I don't know quite why that should be? I suppose that I am bound to feel like that a lot in these coming months as I work out what everything means now that I appear to be getting better etc.
Jazz night tomorrow - which will be nice apart from the appalling weather.
Monday, August 31, 2009
Back to work tomorrow
Not looking forward to it but then again I have lots of other meetings to chop up my week into bite sized chunks. I need to try and work out how to get stacks of work into a few days as well now that I have days out coming up.
I didn't get much done today, went for a walk, bought some beer, sat in the sun, drank some beer and that was my day done really.
Still not convinced about what I want to do next though.
I didn't get much done today, went for a walk, bought some beer, sat in the sun, drank some beer and that was my day done really.
Still not convinced about what I want to do next though.
What am I doing here?
A question we may all ask ourselves from time to time I suppose? Recently it is one of those questions that invades my mind when I let it and then I can't get rid of the damn thing. Last night it must have been 2 am before I finally went off to sleep as my mind was racing around trying to work out what on earth is going on at the moment.
I actually started for a very short time to feel sorry for myself or more like it started to realise what I'd been through these past three years. Then I considered that what I thought might be a sort of freedom isn't actually that at all. Just remission (maybe "just" isn't the right word in that context). Any sort of remission is good what I meant was that it would be a constant for the rest of my life and that is when I wondered if I'd be strong enough - for the rest of my life - to continue going into Hospital, having operations and so on. There must be a point when you say "enough is enough"?
Anyway, it appears to be the time for reflection and formulating plans to go forward. My mind is full of crazy stuff like give up work, go on a year's sabbatical, see the world, do something locally, give up anything that smacks of organising other people's lives and so on. It's just a feeling to get away and get some me time and try and re assess, re prioritise and re arrange my life and my brain. The plans that I had three years ago that had been formulated over many years had a different direction. I've done lots of short term tactical things to live through the last three years and swerved in and out of ideas and schemes and as a previously well organised person, I'm living a less than organised life (although perhaps a little more settled routine wise). I think I'm through that now and suddenly there is the opportunity of having the last 1/3 of my working life doing something different to what I've done before.
I actually started for a very short time to feel sorry for myself or more like it started to realise what I'd been through these past three years. Then I considered that what I thought might be a sort of freedom isn't actually that at all. Just remission (maybe "just" isn't the right word in that context). Any sort of remission is good what I meant was that it would be a constant for the rest of my life and that is when I wondered if I'd be strong enough - for the rest of my life - to continue going into Hospital, having operations and so on. There must be a point when you say "enough is enough"?
Anyway, it appears to be the time for reflection and formulating plans to go forward. My mind is full of crazy stuff like give up work, go on a year's sabbatical, see the world, do something locally, give up anything that smacks of organising other people's lives and so on. It's just a feeling to get away and get some me time and try and re assess, re prioritise and re arrange my life and my brain. The plans that I had three years ago that had been formulated over many years had a different direction. I've done lots of short term tactical things to live through the last three years and swerved in and out of ideas and schemes and as a previously well organised person, I'm living a less than organised life (although perhaps a little more settled routine wise). I think I'm through that now and suddenly there is the opportunity of having the last 1/3 of my working life doing something different to what I've done before.
Sunday, August 30, 2009
Insomnia and Bad Dreams
Interestingly for some reason the dreams I tend to get appear to be memorable only around about the time I go into hospital or have treatments. I suppose my mind is going ten to the dozen at such times.
It is the early hours of the morning and I was dozing away and suddenly there were flash backs of the time the children were small and trips we did then and some flash backs way before then to a place I cannot have been to for 40 years or more, just remembering the heat and smells of a late summer day on a walk when I was young. Now I'm saying they are bad dreams and now describing them they don't appear to be that bad but they have stirred up questions that I don't like the sound of much. Big doubting questions about what I've done with my time here on the planet and whether those good times with the children could have been better, could I have done more, did they enjoy it and a raft of other strange feelings about the past.
Now the trouble is that the past is the past and in general terms whilst there are some regrets, in reality, what is done is done and I can't change any of it and I'm not normally troubled too much by the past once I've dismissed it and moved past it. A bit like I was saying a week or so ago that the holiday was about the experience and not necessarily the photographs I brought back. The moment was the thing.
Anyhow, not that it matters much as I'm sat here at my PC in the early hours and I'm wondering quite what on earth all that lot was about. I'm sure there is some strange lesson in all of this but I'm blowed if I can work out what it is. I'm guessing it is just another part of the territory. Perhaps it has something to do with the series of cancer programmes that have been running this week on the TV or perhaps it is something else in my subconscious trying to make itself heard. Well I suppose I've heard it - I just need to interpret it and understand it next I guess.
It is the early hours of the morning and I was dozing away and suddenly there were flash backs of the time the children were small and trips we did then and some flash backs way before then to a place I cannot have been to for 40 years or more, just remembering the heat and smells of a late summer day on a walk when I was young. Now I'm saying they are bad dreams and now describing them they don't appear to be that bad but they have stirred up questions that I don't like the sound of much. Big doubting questions about what I've done with my time here on the planet and whether those good times with the children could have been better, could I have done more, did they enjoy it and a raft of other strange feelings about the past.
Now the trouble is that the past is the past and in general terms whilst there are some regrets, in reality, what is done is done and I can't change any of it and I'm not normally troubled too much by the past once I've dismissed it and moved past it. A bit like I was saying a week or so ago that the holiday was about the experience and not necessarily the photographs I brought back. The moment was the thing.
Anyhow, not that it matters much as I'm sat here at my PC in the early hours and I'm wondering quite what on earth all that lot was about. I'm sure there is some strange lesson in all of this but I'm blowed if I can work out what it is. I'm guessing it is just another part of the territory. Perhaps it has something to do with the series of cancer programmes that have been running this week on the TV or perhaps it is something else in my subconscious trying to make itself heard. Well I suppose I've heard it - I just need to interpret it and understand it next I guess.
Saturday, August 29, 2009
Bank Holiday and Sssshhhhhh - the Sun is out
Well how about that - it is the Bank Holiday weekend and the sun is out and whilst it isn't overly warm it is quite pleasant out there.
It is the end of August and a strange thing happened this morning when my mail arrived and there is an investigation into a potential pension pot that I knew nothing about although the company rang a bell. I wonder if it is my old company that was bought out and that I was made redundant from about 3 years ago? It is in the same area and it was owned by a number of local businessmen. Perhaps it was - it will be interesting to see what will become of the investigation.
September looms large and that must mean it has been close to a year since my last BCG treatments - in fact I think they started a year ago Monday week as they missed the Bank Holiday Monday. It doesn't feel like a year has gone by though.
This week sees Steve Kelley having his next Judgement Day - a Poke and Peek cystoscope and some BCG to follow. We are hoping for a Hat-trick and that we all get to keep clear, move on and progress in the right direction.
My boss returns on Tuesday and somehow in the next two months we need to fit loads of work into the time. Unfortunately - my colleague is off on holiday which is OK but it means that I may have to pick up his work when I have a full workload myself. I have plenty of visits and presentations to write and deliver. It will be a challenge and I'm sure I'll be whinging about it.
L got a Sunday Job but the day she starts was the day we were meant to be at my parents which means they will have to come back a day early so she can start work. Its all complicated stuff, she passed all her exams and at the right sorts of grades and starts 6th form next Thursday. A is looking for a job and off touting her CV around at the moment. Her University doesn't start until the end of September and that is preceded by Freshers Week. I think we also have managed to satisfy the funding people that the company I used to work for (see above) no longer exists and so that, after months and months of messing about, looks to have cleared the way for A to get her funding. Crazy system and an utter nightmare to work through the intransigence of a poorly thought through business process - they should get a professional in there and sort out the exception process.
It is looking so good outside that I think I ought to get out there and grab some rays rather than being sat at my PC. Bye!
It is the end of August and a strange thing happened this morning when my mail arrived and there is an investigation into a potential pension pot that I knew nothing about although the company rang a bell. I wonder if it is my old company that was bought out and that I was made redundant from about 3 years ago? It is in the same area and it was owned by a number of local businessmen. Perhaps it was - it will be interesting to see what will become of the investigation.
September looms large and that must mean it has been close to a year since my last BCG treatments - in fact I think they started a year ago Monday week as they missed the Bank Holiday Monday. It doesn't feel like a year has gone by though.
This week sees Steve Kelley having his next Judgement Day - a Poke and Peek cystoscope and some BCG to follow. We are hoping for a Hat-trick and that we all get to keep clear, move on and progress in the right direction.
My boss returns on Tuesday and somehow in the next two months we need to fit loads of work into the time. Unfortunately - my colleague is off on holiday which is OK but it means that I may have to pick up his work when I have a full workload myself. I have plenty of visits and presentations to write and deliver. It will be a challenge and I'm sure I'll be whinging about it.
L got a Sunday Job but the day she starts was the day we were meant to be at my parents which means they will have to come back a day early so she can start work. Its all complicated stuff, she passed all her exams and at the right sorts of grades and starts 6th form next Thursday. A is looking for a job and off touting her CV around at the moment. Her University doesn't start until the end of September and that is preceded by Freshers Week. I think we also have managed to satisfy the funding people that the company I used to work for (see above) no longer exists and so that, after months and months of messing about, looks to have cleared the way for A to get her funding. Crazy system and an utter nightmare to work through the intransigence of a poorly thought through business process - they should get a professional in there and sort out the exception process.
It is looking so good outside that I think I ought to get out there and grab some rays rather than being sat at my PC. Bye!
Friday, August 28, 2009
On reflection
I've been doing an awful lot of reflecting lately. The premise that this could be clear really is another step in the right direction. There aren't any treatments on the horizon as I've had my maintenance and finished that around about September last year. This set of biopsies they said looked clear and this time there was no red patches or angry marks left in my bladder (that they actually mentioned - normally they do) and so the out patient appointment should be something that I will actually enjoy going to.
There remains what is the next steps in the ongoing observations stage and whether or not these full biopsies (which I read the other day are the "gold standard" for staging, grading and observing) are going to continue and if so at what frequency and for how long. I'm bracing myself that these are for life until they find some other way of sorting this out.
So what's changed? Well it is most peculiar really as I've now got a bit of a hole in my life where bladder cancer used to be and I'm suddenly getting back to my old self in terms of getting things done and getting back on top of my time management. Stuff that I thought had changed a long time ago for good is returning and most markedly the want to shake off the apathetic part of the changes I've had and get back to being a little more organised and a little more proactive.
Additionally there is this urge to do something again. I considered going back and finishing off my University Course but that can wait I think. Whilst I really enjoyed it, I can't see that I want to have that level of commitment right now. I'm getting involved in more getting out and about. I'm off to Lincoln soon and can drop into my parents on the way home and then off down to the depths of Kent/Sussex a week after that. I actually fancy a 6 month vacation but I doubt that will happen. I don't feel like making my working arrangement permanent in fact I'd like to cut back and only do a few days a week although I can't think why.
Yes - a very strange period indeed as everything feels OK but isn't. I feel that I could quite easily just walk away from here and go off and do some wandering for a while and additionally other stuff that used to be important just doesn't seem to be so now. There's an opportunity to go crew a boat through a friend of mine - that would be 6 weeks or so and all I have to do is find my food and beer money. I was sorely tempted to go and do that - it just seems a great thing to do at this moment, just get away from everything and just take some time to myself and redefine what is important and what I now want to do.
I have to say that I find this quite an unexpected outcome after all, it has only been 2 weeks since my operation but the news that perhaps the worrying part is over may just be what has triggered this next phase off. It will be interesting to see if it is just a set of feelings or whether I do actually end up doing something about it?
There remains what is the next steps in the ongoing observations stage and whether or not these full biopsies (which I read the other day are the "gold standard" for staging, grading and observing) are going to continue and if so at what frequency and for how long. I'm bracing myself that these are for life until they find some other way of sorting this out.
So what's changed? Well it is most peculiar really as I've now got a bit of a hole in my life where bladder cancer used to be and I'm suddenly getting back to my old self in terms of getting things done and getting back on top of my time management. Stuff that I thought had changed a long time ago for good is returning and most markedly the want to shake off the apathetic part of the changes I've had and get back to being a little more organised and a little more proactive.
Additionally there is this urge to do something again. I considered going back and finishing off my University Course but that can wait I think. Whilst I really enjoyed it, I can't see that I want to have that level of commitment right now. I'm getting involved in more getting out and about. I'm off to Lincoln soon and can drop into my parents on the way home and then off down to the depths of Kent/Sussex a week after that. I actually fancy a 6 month vacation but I doubt that will happen. I don't feel like making my working arrangement permanent in fact I'd like to cut back and only do a few days a week although I can't think why.
Yes - a very strange period indeed as everything feels OK but isn't. I feel that I could quite easily just walk away from here and go off and do some wandering for a while and additionally other stuff that used to be important just doesn't seem to be so now. There's an opportunity to go crew a boat through a friend of mine - that would be 6 weeks or so and all I have to do is find my food and beer money. I was sorely tempted to go and do that - it just seems a great thing to do at this moment, just get away from everything and just take some time to myself and redefine what is important and what I now want to do.
I have to say that I find this quite an unexpected outcome after all, it has only been 2 weeks since my operation but the news that perhaps the worrying part is over may just be what has triggered this next phase off. It will be interesting to see if it is just a set of feelings or whether I do actually end up doing something about it?
The blood letting
Well not quite. The scab ejecting is perhaps more accurate. It sends a shudder down my spine and gives me the willies just thinking about it and so passing a rather large scab and associated port coloured urine this morning really didn't get my day away on the best footing.
I decided not to go to work so as not to aggravate the situation - you may recall a couple of operations back - I managed to really make myself bleed a lot through exercise and a couple of miles waking to and from the station either end of this morning made me reconsider whether it was a chance worth taking.
When you have blood in your urine there is also a very slight tingling that goes along with it inside your urethra which also isn't pleasant - it doesn't actually hurt though.
So I will continue with my work from home today and give myself a chance to get shot of all the biopsy scabs today.
I decided not to go to work so as not to aggravate the situation - you may recall a couple of operations back - I managed to really make myself bleed a lot through exercise and a couple of miles waking to and from the station either end of this morning made me reconsider whether it was a chance worth taking.
When you have blood in your urine there is also a very slight tingling that goes along with it inside your urethra which also isn't pleasant - it doesn't actually hurt though.
So I will continue with my work from home today and give myself a chance to get shot of all the biopsy scabs today.
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