Some say that an INTJ are happy enough with their own company and that is true. I can happily go and sit in a pub, with a book or newspaper and read that, have a beer and be very happy with my lot. I work well in a team or as a team leader and all the usual stuff but occasionally I tend to find that if I haven't been able to communicate or express myself to someone else then I tend to off load when I do meet someone who is willing to listen. I try to be equal and listen to them but I've noticed that I do tend to miss not having someone to talk to about my ongoing recovery and how I am coping. My mates are good and so they tend to be the ones who "get it".
I can't say that any discussion happens here in the house. Whether that was protection for the children or just we only spoke about the treatment and the practicals I don't know. Certainly, unless anyone actually reads this blog, there isn't a lot of discussion going on.
People at work know that something has happened, a few are in the know, many recognise that there is something wrong with me, they guess it is serious, but we don't talk about it.
The Journey so far has been an interesting one in as much as some things that have happened have been revelations, some things have been unexpected, some have been disappointing but above all, the strangest thing has been that I've changed and no one but no one has reacted to that at all. I'm not the person I was going into this. I'm not at all like I was before, I feel that I am a lot friendlier and more approachable, less likely to deal with fools any better for sure but still, significant changes to the way I used to be and everyone has gotten on and accepted all of that. Its those nearest to me that I don't connect with anymore though and that is disappointing but perhaps they notice it even more than before? Perhaps I am just too different now, too demanding, too lively, talk in a different way and am not the person they knew any longer?
It reminds me of the couple who married and the wife set about changing her Husband, making sure he dressed properly, got on at work, joined the Golf Club and Rotary etc. After 5 years she complained that"he wasn't the man she married!"
I'm sure as hell not the person I was 32 months ago.
Wednesday, March 18, 2009
Working at home
I sort of miss the freedom when I have to go and do "structured" work. Commuting, routine and same desk thinking is one of the things I got away from back in the early 1990s and I enjoyed the creative freedom that working at home gives you.
You can work when you like and that means you work when you are most likely to perform well. You don't have 3 hours worth of travelling each day to add to the day. You don't sit in cattle trucks for the journey and a list of other things that make the typical day to day work experience less than just "getting out of the house".
At least today it was good to get up an hour and a half later and still be sat at my PC before I'd really get started at work. Unfortunately the Third Sector is way behind in terms of flexible working and they don't get working from home at all. When I was in the IT business it was a necessary step to keep costs down and to some extent, as we tended to work at or on customer sites, it meant they could retain smaller offices that we hot desked in and out of. I could structure my day around my customer and myself and get a full day's work completed by 2 or 3 in the afternoon if I got into the office first thing, got what I needed done, went to the customer site etc. It meant that things got done, everyone was happy and I didn't get caught up in the commute in and out of London every day.
So it is quite nice being sat here at the PC and gradually working my way through the things I need to get done at my own pace.
I suppose a day off and I now value my time more than I did when I just sat here working away. Seeing the sun out I'm tempted to think that I'd like a local job that allows me to be in or out as I want. Dream on I suppose :-)
You can work when you like and that means you work when you are most likely to perform well. You don't have 3 hours worth of travelling each day to add to the day. You don't sit in cattle trucks for the journey and a list of other things that make the typical day to day work experience less than just "getting out of the house".
At least today it was good to get up an hour and a half later and still be sat at my PC before I'd really get started at work. Unfortunately the Third Sector is way behind in terms of flexible working and they don't get working from home at all. When I was in the IT business it was a necessary step to keep costs down and to some extent, as we tended to work at or on customer sites, it meant they could retain smaller offices that we hot desked in and out of. I could structure my day around my customer and myself and get a full day's work completed by 2 or 3 in the afternoon if I got into the office first thing, got what I needed done, went to the customer site etc. It meant that things got done, everyone was happy and I didn't get caught up in the commute in and out of London every day.
So it is quite nice being sat here at the PC and gradually working my way through the things I need to get done at my own pace.
I suppose a day off and I now value my time more than I did when I just sat here working away. Seeing the sun out I'm tempted to think that I'd like a local job that allows me to be in or out as I want. Dream on I suppose :-)
Tuesday, March 17, 2009
That day off
Is tomorrow and I have to get a crack on with loads of things that have piled up that need attention all stuff that I "volunteer" for.
In a way I'd like to get rid of a heap of them so I can just spend a bit of time without any pressures or things to distract me. I can spend hours sitting at my desk and no exercising or going out and I'd rather be considering my health and exercising.
Had a bit of a shock today as they want to push on with my contract and I'm a bit reticent - I'd rather stay on a contract basis than go permanent. If this other thing I am working on breaks then there will be a few problems anyway and I'd rather have a breakable contract than anything else.
Something else that I need to consider then... Perhaps part time - I just haven't thought about that either!!!
Oh well a day off then out in the evening and then changing desks at work on Thursday morning. That should be fun - I have no idea if it will work as I'm a bit lively and will be moving next to some other sparky characters too. Oh well we shall have to wait and see.
In a way I'd like to get rid of a heap of them so I can just spend a bit of time without any pressures or things to distract me. I can spend hours sitting at my desk and no exercising or going out and I'd rather be considering my health and exercising.
Had a bit of a shock today as they want to push on with my contract and I'm a bit reticent - I'd rather stay on a contract basis than go permanent. If this other thing I am working on breaks then there will be a few problems anyway and I'd rather have a breakable contract than anything else.
Something else that I need to consider then... Perhaps part time - I just haven't thought about that either!!!
Oh well a day off then out in the evening and then changing desks at work on Thursday morning. That should be fun - I have no idea if it will work as I'm a bit lively and will be moving next to some other sparky characters too. Oh well we shall have to wait and see.
Monday, March 16, 2009
By now I am shattered
The previous blog forgot to say that I am out every Monday from late September to late May and don't get back until after 11 normally (unless I was having treatments) and so Monday nights can be very bad for me but - at least - I don't tend to have any insomnia on a Monday! Some upside :-)
I was reading some interesting notes today about cancer that it is included as part of the Disability Discrimination Act!! Whoa - that needs more investigation. Not for where I am as they are so keen to get me into being a permanent employee it is untrue but more over the legal aspects which interest me in terms of cancer being labelled as a disability and it appears that the side effects and long term recovery is also viewed that way too. I imagine that there is the ability to pay disability allowance to some people and I wonder how many realise that is the case. Whether or not it is applicable to me, it does show that there is something being done about it and something is in place to cover it.
I was reading some interesting notes today about cancer that it is included as part of the Disability Discrimination Act!! Whoa - that needs more investigation. Not for where I am as they are so keen to get me into being a permanent employee it is untrue but more over the legal aspects which interest me in terms of cancer being labelled as a disability and it appears that the side effects and long term recovery is also viewed that way too. I imagine that there is the ability to pay disability allowance to some people and I wonder how many realise that is the case. Whether or not it is applicable to me, it does show that there is something being done about it and something is in place to cover it.
Start of the week
It always seems to be the same that the start of the week I get tired as I am coming home and gradually each day I get tired earlier on in the day progressively. It does appear to be better and in terms of the utter fatigue I was getting some months ago this is far more manageable.
In terms of work - well that is also now manageable too. I just get on and do my work and crash my way through it. I need to have some time off this week as there are lots of silly little things I need to do and if I don't work my way through them - I will probably forget.
I could really do with losing a load of these things I have been doing for years. I am tiring of running them and someone else can probably run them better than I can and can take some care and attention of them too.
Other than that - Monday isn't so bad I suppose - at least work was OK and the journey was OK both ways so I can't complain.
In terms of work - well that is also now manageable too. I just get on and do my work and crash my way through it. I need to have some time off this week as there are lots of silly little things I need to do and if I don't work my way through them - I will probably forget.
I could really do with losing a load of these things I have been doing for years. I am tiring of running them and someone else can probably run them better than I can and can take some care and attention of them too.
Other than that - Monday isn't so bad I suppose - at least work was OK and the journey was OK both ways so I can't complain.
Sunday, March 15, 2009
Fatigue ongoing
I've been tired all day today and slept in and have dropped off a couple of times this afternoon. I make a conscious decision not to sit at my computer on a Sunday but today sat downstairs with my laptop.
I think that I need a few days off this week to get myself organised. Loads of things to do and I just need to sit down and do them. Not least of which are my accounts and also to sort out my diary as I am out non stop now and need to sort that out too.
This tiredness builds up day on day and luckily I do have the weekends to catch up at weekends.
I think that I need a few days off this week to get myself organised. Loads of things to do and I just need to sit down and do them. Not least of which are my accounts and also to sort out my diary as I am out non stop now and need to sort that out too.
This tiredness builds up day on day and luckily I do have the weekends to catch up at weekends.
A Personal Journey
Experiencing cancer must of necessity be a personal experience and it is governed by your circumstance in life, your family, your geography and you own make-up, personality etc.
Even amongst Hospitals in the same county here in the UK the regime for dealing with BC is different. The postcode lottery (zip code) can also affect you treatment.
Your attitude, your outlook, your ability to take treatments and your fitness, your age and sex will all determine your own experience.
Some things are constants - TURBTs, BCGs and so on but the thing I am driving at is that things happen to you and you deal with them in your own particular way. My experience of being somewhat nonplussed by the results isn't exactly typical for example.
The thing I never expected was to have so many changes to my personality and to me generally caused, I am almost certain, through the journey so far.
I've noticed that I am really "lively" these days, I kept my table amused with loads of jokes last night and for an introvert you'd have been surprised I think. My wit is sharper than it ever was but my ability to chose certain words that I want to use lets me down all the time. Added to that not being able to remember a speech that I have done a number of times and it brought it home to me that there have been significant changes in terms of my memory and also how I see the world. It no longer matters what happens - nothing trivial can ever be serious again. That is the more amazing part of the journey, you get to see your eventual destiny and get taken right towards that place. You hang there for a while and then ever so gradually you withdraw from it.
That insight helps you to reconsider and reevaluate your world. As someone who has always been in the business of "control" the whole thing has been more traumatic as you have no control over things. What I do like is the ability to look at things in terms that make me compare things against "whether anyone will die". Is it that important, is it life threatening, is it really that important. Most of the answers are no and so what is great is that ability to rationalise things and boil them down to the basics.
I miss having a good memory but I enjoy the fast wit and lighter me. Gradually it is dawning on me that things are getting better. I'm not looking forward to having more tests etc but they are needed and I feel that taking away the immunotherapy treatments have lightened that disappointment.
Even amongst Hospitals in the same county here in the UK the regime for dealing with BC is different. The postcode lottery (zip code) can also affect you treatment.
Your attitude, your outlook, your ability to take treatments and your fitness, your age and sex will all determine your own experience.
Some things are constants - TURBTs, BCGs and so on but the thing I am driving at is that things happen to you and you deal with them in your own particular way. My experience of being somewhat nonplussed by the results isn't exactly typical for example.
The thing I never expected was to have so many changes to my personality and to me generally caused, I am almost certain, through the journey so far.
I've noticed that I am really "lively" these days, I kept my table amused with loads of jokes last night and for an introvert you'd have been surprised I think. My wit is sharper than it ever was but my ability to chose certain words that I want to use lets me down all the time. Added to that not being able to remember a speech that I have done a number of times and it brought it home to me that there have been significant changes in terms of my memory and also how I see the world. It no longer matters what happens - nothing trivial can ever be serious again. That is the more amazing part of the journey, you get to see your eventual destiny and get taken right towards that place. You hang there for a while and then ever so gradually you withdraw from it.
That insight helps you to reconsider and reevaluate your world. As someone who has always been in the business of "control" the whole thing has been more traumatic as you have no control over things. What I do like is the ability to look at things in terms that make me compare things against "whether anyone will die". Is it that important, is it life threatening, is it really that important. Most of the answers are no and so what is great is that ability to rationalise things and boil them down to the basics.
I miss having a good memory but I enjoy the fast wit and lighter me. Gradually it is dawning on me that things are getting better. I'm not looking forward to having more tests etc but they are needed and I feel that taking away the immunotherapy treatments have lightened that disappointment.
A great day out
But I completely lost my memory. I've been working for weeks to get this speech learnt and delivered and I got to the meting and promplty forgot the whole thing. Luckily, a friend was up to do it and did a great job and it took a load of pressure off of me.
The lesson learnt is that I can't do what I used to do just a few years ago - learn a 5 or 6 page speech and deliver it without reading it - from memory - with only minimal or no prompting.
I now realise how bad my brain is in terms of this and it reinforces what I thought I knew..
Anyway, it was also a lovely day because the Lodge gave some money to L so she can go on her field trip to Argentina and do her voluntary work and trekking etc. This is great news as it takes her over the £4,000 barrier and she now only needs a few hundred pounds to complete her fund-raising. I think, for a 15 year old, she has worked really hard to get the money together. She has raised it all and done all sorts of activities to get the money. She isn't allowed to work officially so she has had to rely on boot sales, bag packing, sponsored events etc. Good for her. She is going to get a lovely surprise in the morning.
She has the most wonderful opportunity of a life-time to go to Argentina and help establish a school there and undertake trekking, exploring, climbing and other activities. They say she will come back a changed girl. I certainly hope she makes the most of it and - I think - having raised almost all the money herself - she will appreciate the whole thing.
I wish that I had those sorts of opportunities in my day.
The lesson learnt is that I can't do what I used to do just a few years ago - learn a 5 or 6 page speech and deliver it without reading it - from memory - with only minimal or no prompting.
I now realise how bad my brain is in terms of this and it reinforces what I thought I knew..
Anyway, it was also a lovely day because the Lodge gave some money to L so she can go on her field trip to Argentina and do her voluntary work and trekking etc. This is great news as it takes her over the £4,000 barrier and she now only needs a few hundred pounds to complete her fund-raising. I think, for a 15 year old, she has worked really hard to get the money together. She has raised it all and done all sorts of activities to get the money. She isn't allowed to work officially so she has had to rely on boot sales, bag packing, sponsored events etc. Good for her. She is going to get a lovely surprise in the morning.
She has the most wonderful opportunity of a life-time to go to Argentina and help establish a school there and undertake trekking, exploring, climbing and other activities. They say she will come back a changed girl. I certainly hope she makes the most of it and - I think - having raised almost all the money herself - she will appreciate the whole thing.
I wish that I had those sorts of opportunities in my day.
Saturday, March 14, 2009
Strange Feeling
I have been really pleased that friends are cheering me up recently. I'm happy that things are going right but I still have a nagging feeling that the uncertainty caused through the U turn by the Consultant is worrying me.
Not that I am into conspiracy theories - I reckon it was just an honest case of not fully reading the notes when they decided to stick me on Maintenance having already been on maintenance.
Oh well, out again today and I hope that it will be an enjoyable meeting and everyone has a good time. I have a lot to do again and some more words which are giving me trouble. I hope that it goes alright.
Not that I am into conspiracy theories - I reckon it was just an honest case of not fully reading the notes when they decided to stick me on Maintenance having already been on maintenance.
Oh well, out again today and I hope that it will be an enjoyable meeting and everyone has a good time. I have a lot to do again and some more words which are giving me trouble. I hope that it goes alright.
Do you know who your friends are?
I think I do and I think that their kind words and, more so their actions, have been instrumental in my fight and recovery from Cancer.
Cheers guys
Cheers guys
Coincidence or what?
was waiting to go home after my meeting and turned to see an old friend who was (Play soundtrack to Twilight Zone) texting me at the same time. We decided to go for a beer or three. Not bad as I had been at a business meeting until then. I was about to catch the 19:45 and ended up on the 23: 00
Yes - well = right - what are the chances of that happening?
I am about to retire hurt I think.
Yes - well = right - what are the chances of that happening?
I am about to retire hurt I think.
Thursday, March 12, 2009
Another nice day
I had one of those funny sorts of days. Funny in terms of the momentary lapse of reason I had when I realised that people are still thinking of me as a "Resource" when I am so much more than that. I am finding that one of my problems is that I need challenges, responsibility and recognition and those are lacking at present. Nowt phases me except being taken for granted as some sort of "secretarial" aide.
So on to more enjoyable stuff. A friend received, at the tender age of 92, his 50 years in Masonry Certificate. He is a lovely man and so Flocky Bicep and I went to the meeting. We hadn't been invited to dine and so made our way back here, got changed and went for a Curry. We initially ventured to one I used to go to and lo and behold - it doesn't exist anymore so we came back to the Village and had a nice curry and a good long chat.
Nice - enjoyed that and got a lot off my chest. I tend to thrash out my stuff on the blog as no bugger listens to me anyway! Tonight was slightly different as it was immediately interactive. Thanks Flocky.
So on to more enjoyable stuff. A friend received, at the tender age of 92, his 50 years in Masonry Certificate. He is a lovely man and so Flocky Bicep and I went to the meeting. We hadn't been invited to dine and so made our way back here, got changed and went for a Curry. We initially ventured to one I used to go to and lo and behold - it doesn't exist anymore so we came back to the Village and had a nice curry and a good long chat.
Nice - enjoyed that and got a lot off my chest. I tend to thrash out my stuff on the blog as no bugger listens to me anyway! Tonight was slightly different as it was immediately interactive. Thanks Flocky.
Wednesday, March 11, 2009
Interesting Day
As I work in the Grand Lodge building it was nice to get an opportunity to go and see one of the 5 major meetings that are held - well - just up the stairs from us. So the day was busy but quite an enjoyable one. I suppose that I have a very enviable position being able to do that and it was my first Grand Lodge - it was impressive and most enjoyable as there are big changes at the top and it looks like exciting times ahead.
No idiot this morning to complain about or have a go at but I did get to see some random acts of stupidity. I don't know why it is but imagine you are walking towards someone and decide to take a certain line. The pavement I am talking about here is a good 15 feet wide and I am 20 or 30 paces away and make my manoeuvre towards the roadside so that we are no longer on a collision course. My opposite number is aware of this change and instead of walking in a straight line also alters course some 5 steps later bringing herself (you knew I was going to say that didn't you?) back onto collision course. Now we are feet away and neither of us knows what to do next except the stop and sidestep together a few times routine!
Add to that the person who walked in front of the traffic outside charing Cross and caused much screeching of brakes and the walk to work was at least a little amusing.
As for me - well I am tired but I am happy being tired and in the knowledge that things will continue to get better for a while.
I'm relatively happy and calm about things although I would really like to resolve work, employment or otherwise in the next few weeks.
My diary looks like a battlefield and I must get something together to send to my cousins by this weekend. I have a stack of stuff still to do and I have loads of meetings and things still to catch up on. It is nice I suppose to know that as long as the charity holds together, that I have a job there and I am pleased that I am making a difference.
No idiot this morning to complain about or have a go at but I did get to see some random acts of stupidity. I don't know why it is but imagine you are walking towards someone and decide to take a certain line. The pavement I am talking about here is a good 15 feet wide and I am 20 or 30 paces away and make my manoeuvre towards the roadside so that we are no longer on a collision course. My opposite number is aware of this change and instead of walking in a straight line also alters course some 5 steps later bringing herself (you knew I was going to say that didn't you?) back onto collision course. Now we are feet away and neither of us knows what to do next except the stop and sidestep together a few times routine!
Add to that the person who walked in front of the traffic outside charing Cross and caused much screeching of brakes and the walk to work was at least a little amusing.
As for me - well I am tired but I am happy being tired and in the knowledge that things will continue to get better for a while.
I'm relatively happy and calm about things although I would really like to resolve work, employment or otherwise in the next few weeks.
My diary looks like a battlefield and I must get something together to send to my cousins by this weekend. I have a stack of stuff still to do and I have loads of meetings and things still to catch up on. It is nice I suppose to know that as long as the charity holds together, that I have a job there and I am pleased that I am making a difference.
Tuesday, March 10, 2009
Nostalgia
Lads night out tonight and it was good as we got an extra old boy along. There were some very funny moments indeed. A couple where I nearly spat out my beer as the punch line came at the wrong moment.
I really enjoyed the evening and relaxed. I can get used to being better - I really can.
Diet starts - after the weekend! I daren't even think when exercise starts :-(
I really enjoyed the evening and relaxed. I can get used to being better - I really can.
Diet starts - after the weekend! I daren't even think when exercise starts :-(
Strange day
It was a strange day today - I belted through my work - I was on a real charge and I am in advance on some other bits and I still had capacity - suddenly I realised that I'm back into my old thrash mode and back up to speed which has been missing for 3 or 4 months. It is good. I also seem to be getting some real progress on some of the minor projects and have a couple of new ones starting too.
I'm quite content at work at the moment - had a funny one this morning, queuing at Pret two of us, two servers and a guy barges past me and orders up - the lady looked at me and I told her to serve my friend first as he was "obviously very hungry and perhaps thirsty too as anyone who wasn't would have been able to queue must be". He sort of looked and made a neanderthal noise. Then when he got served that twat paid for it with a credit card he screwed up that and also his discount card which was also out of date - where do we import these people from? The guy behind the counter was ready for any trouble. However, it was OK as he was as thick as brown stuff anyway. As he left I told him not to eat his food too fast as I'd hate for him to rush it and choke himself. This is a guy who obviously was in a terrible rush.
I nearly gave him the "doesn't your religion forbid you to eat on an empty stomach?" but he'd had enough of my tongue by then and we were all laughing - apart from him who still didn't get it. What an utter dick head. I shudder that there are ignorant people like that around. He's lucky my kid brother wasn't there he'd have found himself frog marched into the street if he'd done it to him :-)
It really doesn't cost anything to have good manners does it? I remember a chap giving up his seat for a lady on the bus and after a while he said "Pardon?" The lady said "I didn't say anything" he said "Oh sorry I thought you said thank you". She got off next stop - nice one.
I'm quite content at work at the moment - had a funny one this morning, queuing at Pret two of us, two servers and a guy barges past me and orders up - the lady looked at me and I told her to serve my friend first as he was "obviously very hungry and perhaps thirsty too as anyone who wasn't would have been able to queue must be". He sort of looked and made a neanderthal noise. Then when he got served that twat paid for it with a credit card he screwed up that and also his discount card which was also out of date - where do we import these people from? The guy behind the counter was ready for any trouble. However, it was OK as he was as thick as brown stuff anyway. As he left I told him not to eat his food too fast as I'd hate for him to rush it and choke himself. This is a guy who obviously was in a terrible rush.
I nearly gave him the "doesn't your religion forbid you to eat on an empty stomach?" but he'd had enough of my tongue by then and we were all laughing - apart from him who still didn't get it. What an utter dick head. I shudder that there are ignorant people like that around. He's lucky my kid brother wasn't there he'd have found himself frog marched into the street if he'd done it to him :-)
It really doesn't cost anything to have good manners does it? I remember a chap giving up his seat for a lady on the bus and after a while he said "Pardon?" The lady said "I didn't say anything" he said "Oh sorry I thought you said thank you". She got off next stop - nice one.
Monday, March 09, 2009
Wall of disappointment
I'm a funny guy. Funny peculiar that is. I just cannot believe that this may be the end of the beginning. Nor can I get my head around letting go of things and moving on a bit.
Having convinced myself to go another round of maintenance and then finding it isn't necessary has left me nonplussed. Work is fine, I can cope with that but somehow I appear to have lost the ability to control m time in this past week. I am weighed down with so many things to do and I'd almost got to the point tonight of saying "what the hell" where normally I would be sorting out problems in the face of adversity I was actually asking myself - "why should I give a sh1t?" That is so unlike me. It wouldn't happen of course as I wouldn't let my friends down but I just feel very tired and very fatigued and as if I've run a marathon and I am on my last legs and totally exhausted.
Now that isn't surprising to you I guess. you can probably understand that fighting cancer for 32 months or so is going to leave you pretty knackered for sure.
Well it does because the relief is kicking in and my guard is coming down, the fences that I have built are being dismantled and all of the self preservation mechanisms are slowly disappearing and it is leaving me exposed and vulnerable and tired.
I cannot properly articulate quite how it feels other than just wanting to flop down in a chair after a long walk but not after a long run? Tired but not exhausted. Also, there are many things competing for my time and I'm not handling those well at all. I cannot work out what I am doing, what direction I want to head in and whether I'm doing the right thing.
All in all, I am one screwed up cookie right now. I honestly think that it isn't long term issues it is just coming to terms with the whole change in diagnosis. The fear is that the atypia goes and does something nasty to me. The upshot is that I don't have BCG treatments and that so far the BCG treatment has done its job.
I'm sort of free again but a bit like a caged animal, they have opened the cage door and I'm not sure if I want to leave what I've known.
Trepidation, some fear, letting my guard down, being vulnerable, being "normal" again. I reckon I could keep a shrink employed for 6 months on this lot!! :-)
I think I ought to just go off for a holiday and relax and get my head together.
Having convinced myself to go another round of maintenance and then finding it isn't necessary has left me nonplussed. Work is fine, I can cope with that but somehow I appear to have lost the ability to control m time in this past week. I am weighed down with so many things to do and I'd almost got to the point tonight of saying "what the hell" where normally I would be sorting out problems in the face of adversity I was actually asking myself - "why should I give a sh1t?" That is so unlike me. It wouldn't happen of course as I wouldn't let my friends down but I just feel very tired and very fatigued and as if I've run a marathon and I am on my last legs and totally exhausted.
Now that isn't surprising to you I guess. you can probably understand that fighting cancer for 32 months or so is going to leave you pretty knackered for sure.
Well it does because the relief is kicking in and my guard is coming down, the fences that I have built are being dismantled and all of the self preservation mechanisms are slowly disappearing and it is leaving me exposed and vulnerable and tired.
I cannot properly articulate quite how it feels other than just wanting to flop down in a chair after a long walk but not after a long run? Tired but not exhausted. Also, there are many things competing for my time and I'm not handling those well at all. I cannot work out what I am doing, what direction I want to head in and whether I'm doing the right thing.
All in all, I am one screwed up cookie right now. I honestly think that it isn't long term issues it is just coming to terms with the whole change in diagnosis. The fear is that the atypia goes and does something nasty to me. The upshot is that I don't have BCG treatments and that so far the BCG treatment has done its job.
I'm sort of free again but a bit like a caged animal, they have opened the cage door and I'm not sure if I want to leave what I've known.
Trepidation, some fear, letting my guard down, being vulnerable, being "normal" again. I reckon I could keep a shrink employed for 6 months on this lot!! :-)
I think I ought to just go off for a holiday and relax and get my head together.
Sunday, March 08, 2009
Calls from NZ and coming to terms with things
My Cousins in NZ called - that was nice. They are due over here later this year and it will be good to see them - it must have been 6 years or so since they were here last. We never did get out to NZ ourselves. Certainly not the last three years with my little run in with the big C.
I need to sort out when I am around as my calendar is crazy at the moment - I must remember to get that sorted tomorrow and e-mailed off.
Today has been crazy but I got the accounts sorted partly - certainly got them so that the money is banked and squared away. I need to sit down and do the accounts properly - probably next week if I can. It takes a good few hours to make sure everything is accounted for and in its right place.
I'm feeling a little better every day and perking up a bit more. It has taken a while to sink in that I don't need the treatment. The niggle and worry is that it comes back. I know that isn't a positive way of thinking but it is realistic. I don't knowingly do anything to warrant bringing the Cancer back but I need to be mindful that it can return. I now have to step up my efforts to get fitter and to spend some time returning to my correct weight and if I can to fit in the exercise and fitness regimes.
I'm desperate to hand off more work to others like the Egg Hunt and other things I regularly organise as I feel I am not providing anything new or fresh - in the case of the Egg Hunt I've done that for 14 years this year - I can hardly believe it but there it is. I'm seeing a lot further than the next few months and next year all of a sudden - which is good. Shall I go full time at the charity? Maybe get back to what I used to do before I got ill? Perhaps finally go and do my family history business? Suddenly, with the good news, everything is back on the table for discussion and for negotiation.
Being free of the treatment means getting some sort of control over your life back and getting that control back certainly means that you finally feel as if you can see into the future a bit better. I can look forward at least 10 years now and I haven't really done that for a long time as I have been concentrating on getting to the next stage in the treatment and recovery.
I suppose June will be another Judgement day but by then, it would be 2 years (or more) if it is clear and that must be a huge hurdle to clear. The longer I go clear, the better the chances of seeing this off and being free of the sword of Damocles hanging over me.
Yes - writing this I do feel different and I do feel positive and whilst there is a nagging doubt at the back of my mind, I am able to look forward with some confidence once again.
They haven't seen a really full on me at this place of work - I imagine when they do see me properly recovered they'll wonder what on earth has hit them.
Step aside world, I could be back very soon :-) Blimey, I hope they are ready for it - And I hope I am ready for it too!
I need to sort out when I am around as my calendar is crazy at the moment - I must remember to get that sorted tomorrow and e-mailed off.
Today has been crazy but I got the accounts sorted partly - certainly got them so that the money is banked and squared away. I need to sit down and do the accounts properly - probably next week if I can. It takes a good few hours to make sure everything is accounted for and in its right place.
I'm feeling a little better every day and perking up a bit more. It has taken a while to sink in that I don't need the treatment. The niggle and worry is that it comes back. I know that isn't a positive way of thinking but it is realistic. I don't knowingly do anything to warrant bringing the Cancer back but I need to be mindful that it can return. I now have to step up my efforts to get fitter and to spend some time returning to my correct weight and if I can to fit in the exercise and fitness regimes.
I'm desperate to hand off more work to others like the Egg Hunt and other things I regularly organise as I feel I am not providing anything new or fresh - in the case of the Egg Hunt I've done that for 14 years this year - I can hardly believe it but there it is. I'm seeing a lot further than the next few months and next year all of a sudden - which is good. Shall I go full time at the charity? Maybe get back to what I used to do before I got ill? Perhaps finally go and do my family history business? Suddenly, with the good news, everything is back on the table for discussion and for negotiation.
Being free of the treatment means getting some sort of control over your life back and getting that control back certainly means that you finally feel as if you can see into the future a bit better. I can look forward at least 10 years now and I haven't really done that for a long time as I have been concentrating on getting to the next stage in the treatment and recovery.
I suppose June will be another Judgement day but by then, it would be 2 years (or more) if it is clear and that must be a huge hurdle to clear. The longer I go clear, the better the chances of seeing this off and being free of the sword of Damocles hanging over me.
Yes - writing this I do feel different and I do feel positive and whilst there is a nagging doubt at the back of my mind, I am able to look forward with some confidence once again.
They haven't seen a really full on me at this place of work - I imagine when they do see me properly recovered they'll wonder what on earth has hit them.
Step aside world, I could be back very soon :-) Blimey, I hope they are ready for it - And I hope I am ready for it too!
Putting it into perspective
I had another of my long sleeps and must have done 12 hours! I feel fine but I still have residual hearing problems and continual pops and tinnitus although some days all is OK and others not so good.
Had a nice note from Andy P and from Steve K and it is great that your peers pull you up occasionally or better than that support how you are feeling. It is nice to know you are not alone. So having said that I am pretty cheery and as Steve K put it - no more BCG and indeed that did bring it home. You see I have been clear for 18 months and so that isn't the issue. The BCG stopping really does mean that I can start to build myself back to being fitter without the interruption of the BCG regime which whilst it is a marvellous treatment and sorts out and gets rid of your cancer, really does knock ten bells out of you at the same time - it's bound to so strong are it's powers and therefore its side effects too sometimes.
So I am pretty cheerful. I have lots to do in the next few weeks and so will be absorbed into learning words for next Saturday - I have a friend joining my Lodge which will be great. There are meetings throughout the week. I am being asked to go to work on Friday when it is Comic Relief day - which I hate and normally stay at home for. One thing I cannot abide is being accosted multiple times on the way to work by someone dressed as a clown sticking a bucket under my nose. I want to become quite uncharitable about it even though they are doing it for the right reasons, don't force it down my throat. By the time the 20th clown has walked up to me with a bucket I am preparing myself for a short trial and life imprisonment - NO really :-)
I am also out the next three Saturdays - eeeek Mrs. F. is probably going to not be impressed with that either :-)
Anyway - if nothing else, my sense of humour is back with a vengeance. I now need to just believe things are a lot better than they were this time last week and I'll be on the right road.
Had a nice note from Andy P and from Steve K and it is great that your peers pull you up occasionally or better than that support how you are feeling. It is nice to know you are not alone. So having said that I am pretty cheery and as Steve K put it - no more BCG and indeed that did bring it home. You see I have been clear for 18 months and so that isn't the issue. The BCG stopping really does mean that I can start to build myself back to being fitter without the interruption of the BCG regime which whilst it is a marvellous treatment and sorts out and gets rid of your cancer, really does knock ten bells out of you at the same time - it's bound to so strong are it's powers and therefore its side effects too sometimes.
So I am pretty cheerful. I have lots to do in the next few weeks and so will be absorbed into learning words for next Saturday - I have a friend joining my Lodge which will be great. There are meetings throughout the week. I am being asked to go to work on Friday when it is Comic Relief day - which I hate and normally stay at home for. One thing I cannot abide is being accosted multiple times on the way to work by someone dressed as a clown sticking a bucket under my nose. I want to become quite uncharitable about it even though they are doing it for the right reasons, don't force it down my throat. By the time the 20th clown has walked up to me with a bucket I am preparing myself for a short trial and life imprisonment - NO really :-)
I am also out the next three Saturdays - eeeek Mrs. F. is probably going to not be impressed with that either :-)
Anyway - if nothing else, my sense of humour is back with a vengeance. I now need to just believe things are a lot better than they were this time last week and I'll be on the right road.
Saturday, March 07, 2009
Thanks a Bunch Royal Mail
Thanks Royal Mail - You gits. Not only did you manage to lose my Hospital letter posted on the 9th February but also the letter that arrived with it on the same day which I have now finished reading right through was also dated the 9th February! They only needed an answer at the end of February and as it was to do with my savings - there's another thing all SNAFU. Bloody great - I'll have to sort that out now too.
So it wasn't the Hospital at all by the looks of it. What are the chances of two letters both dated the same date arriving 3 weeks late together. You sods...
I think I can turn the flame gun off now, it does make you want to spit though doesn't it?
So I could have known weeks ago that things would be different and not have to pester the Hospital.
Oh well. Back to my paperwork then...
So it wasn't the Hospital at all by the looks of it. What are the chances of two letters both dated the same date arriving 3 weeks late together. You sods...
I think I can turn the flame gun off now, it does make you want to spit though doesn't it?
So I could have known weeks ago that things would be different and not have to pester the Hospital.
Oh well. Back to my paperwork then...
Chirpier for sure
I'm a little bit chirpier than I have been and was certainly being entertaining this morning which is nice. I'm still coming to terms with "what it means" and that may perplex anyone else but me. I'm really spending a while thinking it about it.
I was quite disappointed that this wasn't the outcome in January. I then had to come to terms with a further year's worth of maintenance and biopsies. They are bloody challenging as you probably remember and then to have that decision overturned back to where it should have been in the first place is concerning me. Just when I had convinced myself that the maintenance was necessary I now find that it isn't.
I can't imagine that they would put me at risk if they felt the Atypia needed treating then they'd go ahead. As it stands, it is Atypia, not Precancerous and so doesn't need anything I suppose.
Let's all hope that I "get it" soon and get my life back.
I was quite disappointed that this wasn't the outcome in January. I then had to come to terms with a further year's worth of maintenance and biopsies. They are bloody challenging as you probably remember and then to have that decision overturned back to where it should have been in the first place is concerning me. Just when I had convinced myself that the maintenance was necessary I now find that it isn't.
I can't imagine that they would put me at risk if they felt the Atypia needed treating then they'd go ahead. As it stands, it is Atypia, not Precancerous and so doesn't need anything I suppose.
Let's all hope that I "get it" soon and get my life back.
Friday, March 06, 2009
I thought that I would be
leaping about and going crazy and enjoying things and actually I have surprised myself by being quite calm and cool about the news.
Work want to take me on permanently (despite the risk) and I am in a good frame of mind, I am perhaps a little more lively than before but I'm also getting better and with that lasting a little longer at work, not quite so tired and learning to relax a bit too.
Things are beginning to come back under some level of control. This news is unexpected. It is however what I thought was going to happen way back in January.
So I guess that June will be the biopsy time - maybe July but I could do with June. I really fancy a bit of a bash if things are good again and go off somewhere and relax. I think Mrs. F has other ideas, she never relaxes. I could do hot weather, pool, liquid fridge and barbecue for 2 weeks - that's it. Heaven. Mrs. F would have to see all the local sights, museums, go for long walks and all that old malarkey :-)
Maybe I could go somewhere warm and she could walk there over the two weeks?
Exercise - I didn't do any this week. Diet - I did a bit but had some meals that spoilt that. Next week is hardly better there are loads of things going on in fact for two weeks. I wonder how food critics stay slim. I am going to be off for a whole series of three and four course meals in the next few weeks.
Anyway, I can feel that I have a lighter sense of humour and so am obviously cheered up and feeling a lot better than I was earlier this week so maybe it is a gradual thing.
I tried to explain that I could still get a recurrence to the boss but he doesn't appear worried. It is the end of my first year at work at the end of March and they want me to stay - I'm pleased about that.
The longer you continue to be clear, the more likely it is that you will not get a recur. I can now join in with the people I have read about before whose fear now is a recur and going through it all again.
Work want to take me on permanently (despite the risk) and I am in a good frame of mind, I am perhaps a little more lively than before but I'm also getting better and with that lasting a little longer at work, not quite so tired and learning to relax a bit too.
Things are beginning to come back under some level of control. This news is unexpected. It is however what I thought was going to happen way back in January.
So I guess that June will be the biopsy time - maybe July but I could do with June. I really fancy a bit of a bash if things are good again and go off somewhere and relax. I think Mrs. F has other ideas, she never relaxes. I could do hot weather, pool, liquid fridge and barbecue for 2 weeks - that's it. Heaven. Mrs. F would have to see all the local sights, museums, go for long walks and all that old malarkey :-)
Maybe I could go somewhere warm and she could walk there over the two weeks?
Exercise - I didn't do any this week. Diet - I did a bit but had some meals that spoilt that. Next week is hardly better there are loads of things going on in fact for two weeks. I wonder how food critics stay slim. I am going to be off for a whole series of three and four course meals in the next few weeks.
Anyway, I can feel that I have a lighter sense of humour and so am obviously cheered up and feeling a lot better than I was earlier this week so maybe it is a gradual thing.
I tried to explain that I could still get a recurrence to the boss but he doesn't appear worried. It is the end of my first year at work at the end of March and they want me to stay - I'm pleased about that.
The longer you continue to be clear, the more likely it is that you will not get a recur. I can now join in with the people I have read about before whose fear now is a recur and going through it all again.
Thursday, March 05, 2009
Double Take
The date of the letter that I received today - on the 5th March 2009 is the 9th February 2009!!!!
What on earth has gone on here then? It has been almost a month since they wrote the letter. Has he world gone mad - or did I just miss a month.
Anyway better late than never but even so - I could have had one months less worry!
What on earth has gone on here then? It has been almost a month since they wrote the letter. Has he world gone mad - or did I just miss a month.
Anyway better late than never but even so - I could have had one months less worry!
Laugh / Cry / Laugh / Cry / Both ??????
I have a letter from the Hospital it says:
"I have had a chance to go through your notes and actually you don't require any further BCG treatment as you have now completed the full maintenance course.
We will therefore need to just carry on with regular checks on your bladder and I will see you in 6 months for bladder biopsies.
Yours sincerely etc."
I heard the news late this afternoon at work. I'm stunned. Pleased, of course, but wow - that is great news. It is just I'm not sure how to react to it. I'm neutral at the moment. I had a few flashes of the enormity of it and thumped the desk a few times at work. I think it will sink in later this evening.
Stunned is definitely the right word at the moment.
"I have had a chance to go through your notes and actually you don't require any further BCG treatment as you have now completed the full maintenance course.
We will therefore need to just carry on with regular checks on your bladder and I will see you in 6 months for bladder biopsies.
Yours sincerely etc."
I heard the news late this afternoon at work. I'm stunned. Pleased, of course, but wow - that is great news. It is just I'm not sure how to react to it. I'm neutral at the moment. I had a few flashes of the enormity of it and thumped the desk a few times at work. I think it will sink in later this evening.
Stunned is definitely the right word at the moment.
Wednesday, March 04, 2009
Illegitimi non carborundum
Many other variants - not one of them correct
Nil illegitimi carborundum.
Non illegitimis carborundum.
Illegitimi nil carborundum.
Non illegitimi carborundum.
Nil bastardo carborundum.
Nolite te bastardes carborundorum.
Illegitimis non carborundum.
Illegitimus non carborundum est.
Nil illegitimo in desperandum carborundum
Nil carborundum illegitamae
It reminds me of the Monty Python "Life of Brian" sketch for Romans Go Home :-)
This however is meant to mean "don't let the bastards grind you down".
Or as I'd probably paraphrase it "Objects in mirror are closer than they appear!"
It was good to get the hell out of the house and enjoy the company of friends and to hear some very interesting Trad Jazz. The singer and Banjo player were superb, the beer was at its correct temperature cold but not enough to frost the glass. Morlands Speckled Hen is without doubt a very good reason to stay cancer free for!!!
Roll on my speaking engagement tomorrow.
Nil illegitimi carborundum.
Non illegitimis carborundum.
Illegitimi nil carborundum.
Non illegitimi carborundum.
Nil bastardo carborundum.
Nolite te bastardes carborundorum.
Illegitimis non carborundum.
Illegitimus non carborundum est.
Nil illegitimo in desperandum carborundum
Nil carborundum illegitamae
It reminds me of the Monty Python "Life of Brian" sketch for Romans Go Home :-)
This however is meant to mean "don't let the bastards grind you down".
Or as I'd probably paraphrase it "Objects in mirror are closer than they appear!"
It was good to get the hell out of the house and enjoy the company of friends and to hear some very interesting Trad Jazz. The singer and Banjo player were superb, the beer was at its correct temperature cold but not enough to frost the glass. Morlands Speckled Hen is without doubt a very good reason to stay cancer free for!!!
Roll on my speaking engagement tomorrow.
Sheeesh
Not sure if that is quite how you spell it. I don't hold grudges for long. It was interesting that I also had a "pop" at someone on Monday night which is out of character too.
I wonder whether:
I wonder whether:
- Waiting to hear what the Hospital is or isn't going to do is putting a bit of stress on me?
- The job really has got tedious
- Some people ought to be doing their own job not putting it on me and
- I'm just tired and not drinking lots of coffee etc. Mind you green tea and Earl Grey are taking a whacking. No sugar either...
Whatever it is - I am off to the Jazz night and good job too. That will bring a smile to my face. Tomorrow is likely to be a half day although I am at a speaking engagement (poor audience). They are paying for my food and wine so how sad is that? :-)
I just hope that no one else tries to be "fresh" with their answers. Since when did No actually mean Yes or even Maybe!?
Slightly calmer this morning
Thank goodness a bit of sleep and I am a little bit calmer.
It's a bad part of my character but you don't get second chances much. If you say one thing but mean the other, an INTJ won't get the subtlety of it.
Anyway - work beckons - must dash.
It's a bad part of my character but you don't get second chances much. If you say one thing but mean the other, an INTJ won't get the subtlety of it.
Anyway - work beckons - must dash.
Tuesday, March 03, 2009
Anger Management
I just want to go and break something at the moment. I don't go around thumping people or anything like that but when I do get a rage on, it is pretty bad. Things aren't calming down like they normally do and I really could do with going out and breaking something :-)
I really don't think I have vented my frustration and anger at all since I was diagnosed. Sure I was angry but not seeing red like I am now. I am calmly tapping these keys which surprises me but I suppose I need to measure what I am saying or the keyboard would become mush!
I can't even begin to tell you how angry I am. Really, really angry and yet I am sat here quite calm. I suppose seething might be a better word. Am I angry with Mrs. F? Probably not in the overall scheme of things. Myself? Possibly. Cancer? Perhaps - I don't remember being angry about it before - well not like this.
I will go downstairs and do some calming down after this. The annoying thing on top of this is that - whoops - I may just have resolved this - I haven't had any coffee at work today! Don't tell me it is that.
Oooopps
I really don't think I have vented my frustration and anger at all since I was diagnosed. Sure I was angry but not seeing red like I am now. I am calmly tapping these keys which surprises me but I suppose I need to measure what I am saying or the keyboard would become mush!
I can't even begin to tell you how angry I am. Really, really angry and yet I am sat here quite calm. I suppose seething might be a better word. Am I angry with Mrs. F? Probably not in the overall scheme of things. Myself? Possibly. Cancer? Perhaps - I don't remember being angry about it before - well not like this.
I will go downstairs and do some calming down after this. The annoying thing on top of this is that - whoops - I may just have resolved this - I haven't had any coffee at work today! Don't tell me it is that.
Oooopps
On Being Completely "bent out of shape"
Mr. Angry visited tonight. I am probably the worlds calmest person. It is true that if I think you are an idiot or being stupid you will deserve and get the benefit of my tongue and wit. After one such incident someone was in sincere belief that I had most of the oral niceties of a Viper!
Tonight, not sure why, it was slinging a gale (still is) water everywhere -rain horizontal and just a filthy night. I get off the train to find that it is like trying to round Cape Horn on a Dinghy just to get through the ticket barrier. I phone Mrs. F for some sort of respite - it is after all a mile walk home and I get the "too busy with something else answer".
I hung up the phone, turned that off and threw all my toys out of the pram. I'm still not in the right frame of mind to be talked to.
Right this minute, writing this blog, I could easily go and stove something in, break some crockery or some other such thing. I haven't been this seething angry in absolutely years.
I also don't think I have actually sworn that much since I was on a building site 30 years ago either :-(
Perhaps the pressure gauge needs to be let off? Is it the Collateral damage I have feared all along? I don't know, I may have been angry but I was really holding back. Maybe I need to go on one of those anger management classes. Gee a Magnum and a target would have been a most welcome distraction to vent some spleen tonight.
Damn it I am still so angry even writing this. I need hours to calm down. It is absolutely lashing it down outside and I've already got soaked through tonight so I can't just go for a calming couple of hours walk.
It is at times like this that I tell people to leave me alone and what do they do? Yes, you've guessed it, they try and talk sensibly to me. BIG mistake. When an INTJ goes "into one" you really need to get the hell out of the way.
As I said at the beginning, for me to get beyond standard cynical bastard and into "take no prisoners venom mouth" really takes a lot of goading and a lot of poking and prodding. Today, someone just learnt their limit. As for me, I feel horrible as I don;t like being this angry, this full of adrenaline, this downright vindictive and the loss of control that anger suggests may happen.
Tonight, not sure why, it was slinging a gale (still is) water everywhere -rain horizontal and just a filthy night. I get off the train to find that it is like trying to round Cape Horn on a Dinghy just to get through the ticket barrier. I phone Mrs. F for some sort of respite - it is after all a mile walk home and I get the "too busy with something else answer".
I hung up the phone, turned that off and threw all my toys out of the pram. I'm still not in the right frame of mind to be talked to.
Right this minute, writing this blog, I could easily go and stove something in, break some crockery or some other such thing. I haven't been this seething angry in absolutely years.
I also don't think I have actually sworn that much since I was on a building site 30 years ago either :-(
Perhaps the pressure gauge needs to be let off? Is it the Collateral damage I have feared all along? I don't know, I may have been angry but I was really holding back. Maybe I need to go on one of those anger management classes. Gee a Magnum and a target would have been a most welcome distraction to vent some spleen tonight.
Damn it I am still so angry even writing this. I need hours to calm down. It is absolutely lashing it down outside and I've already got soaked through tonight so I can't just go for a calming couple of hours walk.
It is at times like this that I tell people to leave me alone and what do they do? Yes, you've guessed it, they try and talk sensibly to me. BIG mistake. When an INTJ goes "into one" you really need to get the hell out of the way.
As I said at the beginning, for me to get beyond standard cynical bastard and into "take no prisoners venom mouth" really takes a lot of goading and a lot of poking and prodding. Today, someone just learnt their limit. As for me, I feel horrible as I don;t like being this angry, this full of adrenaline, this downright vindictive and the loss of control that anger suggests may happen.
Monday, March 02, 2009
On Tiredness and Fatigue and Recovery
I haven't had one of those crushing days for a while and I hope I wont get another but you never know. Today was hard work. Keeping busy is my major concern I am actually keeping very busy but there wasn't a whole lot of achievement today.
I am getting to a point where I am cruising and I don't like that. I want a few more challenges and yet I have specifically made time slots available to allow for treatments and things and as nothing is happening I am having to bridge those deliberate gaps in my schedule.
I am wide awake now at close to midnight and I don't want to be. I need to work out how I can get to bed but more importantly get to sleep earlier.
I suppose it is all about habit breaking and adapting and I can perhaps start to change that down this week as I haven't got too much on.
I am getting to a point where I am cruising and I don't like that. I want a few more challenges and yet I have specifically made time slots available to allow for treatments and things and as nothing is happening I am having to bridge those deliberate gaps in my schedule.
I am wide awake now at close to midnight and I don't want to be. I need to work out how I can get to bed but more importantly get to sleep earlier.
I suppose it is all about habit breaking and adapting and I can perhaps start to change that down this week as I haven't got too much on.
Diet? Maybe
Well the best intentions and all that. I ended up having a few beers this evening and so probably undid all the good I did earlier.
I have completely avoided chocolates and sweet things, stopped taking frothy coffee and sugar and in fact drank tea today mainly Green Tea with Jasmine and used sweeteners. I ate a muffin before I went to work (English Muffin) and so didn't stop for my customary Baguette or Almond Croissant.
No sweets (Candy) at all. I just had my sandwiches and soup and that was the lot. So actually I did quite well until we went for a beer before I came back from my evening out.
I think I can reduce my intake this way and eat the right things, I also managed to pack in my 5 a day fruit and veg and so think that I should be able to at least begin to sort things out.
Still no news from the Hospital. I think if I haven't heard in a day or so, I will ring up and see what is going on.
I am feeling a bit better about myself but have to say - some people saw a side of me you don't normally see and that is one who was a little p*ssed off with a friend of mine. I don't mind having to keep bailing him out of the brown and smelly stuff regularly but then to sort of rub my nose in it tonight and ask me to do some more sorting out for him in public meant he got the rough end of my tongue. I daren't even think what my facial expression betrayed. I am genuinely a very easy going person but don't push it or your luck too far. Believe me, my limits are pretty much unreachable but this guy managed it.
Also, I suppose luckily it was all over in a few seconds and was quickly diffused.
I have completely avoided chocolates and sweet things, stopped taking frothy coffee and sugar and in fact drank tea today mainly Green Tea with Jasmine and used sweeteners. I ate a muffin before I went to work (English Muffin) and so didn't stop for my customary Baguette or Almond Croissant.
No sweets (Candy) at all. I just had my sandwiches and soup and that was the lot. So actually I did quite well until we went for a beer before I came back from my evening out.
I think I can reduce my intake this way and eat the right things, I also managed to pack in my 5 a day fruit and veg and so think that I should be able to at least begin to sort things out.
Still no news from the Hospital. I think if I haven't heard in a day or so, I will ring up and see what is going on.
I am feeling a bit better about myself but have to say - some people saw a side of me you don't normally see and that is one who was a little p*ssed off with a friend of mine. I don't mind having to keep bailing him out of the brown and smelly stuff regularly but then to sort of rub my nose in it tonight and ask me to do some more sorting out for him in public meant he got the rough end of my tongue. I daren't even think what my facial expression betrayed. I am genuinely a very easy going person but don't push it or your luck too far. Believe me, my limits are pretty much unreachable but this guy managed it.
Also, I suppose luckily it was all over in a few seconds and was quickly diffused.
Sunday, March 01, 2009
Waiting continues
It has been a week since I wrote to the Hospital once again and it is now March. I had the operation in late December so that is 2 months ago at least.
It is a bit concerning as I don't know what they are going to do with me. It will soon be 3 months since they operated.
It makes you wonder what is going on. Are they waiting for the 3 months and then scope me? Will they wait 3 months and then restart the BCG treatment? Then there were the 2 Rigid Cystoscopies to come too, she wanted those at 6 monthly intervals. It is all a bit strange isn't it? You see I was surprised that I'd need another year of maintenance - considering I had already had a year's worth to date.
I find it unusual for them not to be communicating with me or to have had the appointments if I am having BCG.
Maybe I'll find out this week what is going on?
It is a bit concerning as I don't know what they are going to do with me. It will soon be 3 months since they operated.
It makes you wonder what is going on. Are they waiting for the 3 months and then scope me? Will they wait 3 months and then restart the BCG treatment? Then there were the 2 Rigid Cystoscopies to come too, she wanted those at 6 monthly intervals. It is all a bit strange isn't it? You see I was surprised that I'd need another year of maintenance - considering I had already had a year's worth to date.
I find it unusual for them not to be communicating with me or to have had the appointments if I am having BCG.
Maybe I'll find out this week what is going on?
Long Day and a Shock
I left the house at 8:45 and got home about 5:45
It was a long and tiring, albeit, enjoyable day. The shock came when I put on my waistcoat and found that it needed loosening off.!! In October that fitted and whilst I know I have put on some weight - that graphically demonstrated how much.
I'd say a good 2" around the waist and shoulders. In addition my waist band and belt also showed the same requirements on my trousers (pants).
So I need to do something about it and the next steps really are to work out how to get back to being healthy again and to fit some exercise into my week. I see Steve's blog on just that as a timely reminder for me to go and sort that out.
Work seriously gets in my way in terms of the time I can bring to the job but perhaps I just need to be creative about that as well and work out a way to fit it in.
Whatever happens I cannot ignore this and need to do something about it and fast, it also needs to last too. The trouble with many diets is that they may make you lose weight but they don't address the whole area of sensible eating, exercise and keeping the weight off and being healthy so I am on a mission to sort that out today and also to sort out what has happened to my other PC which isn't working this morning! What is that all about? If it has gone then it is all three PCs in a few months :-(
It was a long and tiring, albeit, enjoyable day. The shock came when I put on my waistcoat and found that it needed loosening off.!! In October that fitted and whilst I know I have put on some weight - that graphically demonstrated how much.
I'd say a good 2" around the waist and shoulders. In addition my waist band and belt also showed the same requirements on my trousers (pants).
So I need to do something about it and the next steps really are to work out how to get back to being healthy again and to fit some exercise into my week. I see Steve's blog on just that as a timely reminder for me to go and sort that out.
Work seriously gets in my way in terms of the time I can bring to the job but perhaps I just need to be creative about that as well and work out a way to fit it in.
Whatever happens I cannot ignore this and need to do something about it and fast, it also needs to last too. The trouble with many diets is that they may make you lose weight but they don't address the whole area of sensible eating, exercise and keeping the weight off and being healthy so I am on a mission to sort that out today and also to sort out what has happened to my other PC which isn't working this morning! What is that all about? If it has gone then it is all three PCs in a few months :-(
Saturday, February 28, 2009
2 in the morning
In fact well gone 2 - about 20 past as my back ups for the PCs have begun. I have finally pulled together the bits for tomorrow. Not sure about the sneezing fit I am having typing this though - blimey, I nearly blew my head off with the last one!
So it has taken me the best part of four hours or more to plan what will happen tomorrow. At least I am well prepared which is the main thing. All the paperwork is now done and the bags are packed ready to go. All I need to do now is set my alarms to a little later than normal, make sure I get up and arrange to be back at the Hall by 9 tomorrow morning.
I will be so knackered tomorrow (today) evening when I get home....
So it has taken me the best part of four hours or more to plan what will happen tomorrow. At least I am well prepared which is the main thing. All the paperwork is now done and the bags are packed ready to go. All I need to do now is set my alarms to a little later than normal, make sure I get up and arrange to be back at the Hall by 9 tomorrow morning.
I will be so knackered tomorrow (today) evening when I get home....
Friday, February 27, 2009
A bit of a RANT earlier
I needed that - I almost ended it with "I've not been well you know" or other such sickism :-)
You really can't believe the bare faced stupidity of some people. I wouldn't mind, we all pay subscriptions and it is all voluntary and yet somehow it is as if life depended on it.
Whilst it IS in my nature to fire off a smart ass one liner, it isn't in my nature to not sort this out. I suppose only another year of this and I can relax a bit.
Roll on retirement in June 2010.
You really can't believe the bare faced stupidity of some people. I wouldn't mind, we all pay subscriptions and it is all voluntary and yet somehow it is as if life depended on it.
Whilst it IS in my nature to fire off a smart ass one liner, it isn't in my nature to not sort this out. I suppose only another year of this and I can relax a bit.
Roll on retirement in June 2010.
WTF? Disorganised people
Really hack me off. I have been out today at a meeting and there is a meeting tomorrow that I am Secretary for. How can it be that people are ringing my house and leaving messages for me on the eve of the meeting when they have known about the meeting for weeks and weeks and in fact the date is fixed by the week in a certain month so it isn't difficult.
So why phone me on a Friday night and then expect me to phone before you go to bed when I actually wont get in until you've been curled up for an hour or two. Of course, your message then means that I have to resolve some situation or other and I end up working way into the early hours to mitigate that and you turn up in the morning all fresh faced and I've had about 2 hours sleep - no wonder I look like sh1t sometimes.
It makes you mad that this sort of thing continues to happen and I thought I would retire from this in June but have another year to run.
I think it is 8 messages in the 4 1/2 hours I have been out.
So why phone me on a Friday night and then expect me to phone before you go to bed when I actually wont get in until you've been curled up for an hour or two. Of course, your message then means that I have to resolve some situation or other and I end up working way into the early hours to mitigate that and you turn up in the morning all fresh faced and I've had about 2 hours sleep - no wonder I look like sh1t sometimes.
It makes you mad that this sort of thing continues to happen and I thought I would retire from this in June but have another year to run.
I think it is 8 messages in the 4 1/2 hours I have been out.
Tempus Fugit
By heck - where has the day gone? I've been thrashing away at my PC and paperwork all day and it still isn't done yet.
I can see a late night coming on yet again. The trouble is that there is a sudden rush of people who realise at the last minute that they haven't done something and I get a hail of phone calls all wanting me to sort it out. The fun part is, I am not around tonight to take their calls or sort it out for them.
Oh well an emergency on their part should not create one on my part.
Feeling OK today, still not heard anything from the Hospital which is nagging away at the back of my mind. It would be nice to know what is going on. They have written to my GP saying they are going to re-do maintenance but that was before they realised I had already had that last year.
I can see a late night coming on yet again. The trouble is that there is a sudden rush of people who realise at the last minute that they haven't done something and I get a hail of phone calls all wanting me to sort it out. The fun part is, I am not around tonight to take their calls or sort it out for them.
Oh well an emergency on their part should not create one on my part.
Feeling OK today, still not heard anything from the Hospital which is nagging away at the back of my mind. It would be nice to know what is going on. They have written to my GP saying they are going to re-do maintenance but that was before they realised I had already had that last year.
Home a day off
Tempered with the fact that I have a pile of my own work to do is the fact that if I am honest, I really don't have a lot to do at work at the moment anyway.
By that I mean - everything is under control and the work that needs to be done is planned out. I have a good day coming up on Thursday when I will be presenting the work of the Charity to a number of people. There are a number of projects that I am starting that will see the year through.
The current discussions, which the Hospital by not telling me what is going to happen, are making a mockery of, will determine the next year's arrangement. I started at the beginning of April last year. I was actually looking at the original advert from a year back last night :-)
The arrangements are that, given they want to stick me on maintenance and not on observation, that I would have close to 50 or more days off this year. That's about 2 1/2 months and that it would be unfair on them to have to pay me sick pay for those. In addition, even though I might be deemed a "special case" the way that the contract of employment works is on three sicks you go on a sort of disciplinary procedure. Short of going around the office and telling everyone what is wrong with me (some know) that too would cause issues.
The best way forward is some form of contract or potentially to go part time but even that might prove hard to manage. I have put forward a document, contract and prices which are based on what I know from my last consultation. If that doesn't materialise then it would look a bit strange if I have priced not to be at the office and then I am.
For all sorts of reasons, not knowing complicates my life and I'd really like it all to be simple and straight forward from now on? :-)
Today is full of strange things for the Lodges like accounts, sorting out paperwork and checking on things. I need to sit down and get on with that without to many distractions. It is always unfortunate that this meeting and tomorrow's come one after the other like this.
By that I mean - everything is under control and the work that needs to be done is planned out. I have a good day coming up on Thursday when I will be presenting the work of the Charity to a number of people. There are a number of projects that I am starting that will see the year through.
The current discussions, which the Hospital by not telling me what is going to happen, are making a mockery of, will determine the next year's arrangement. I started at the beginning of April last year. I was actually looking at the original advert from a year back last night :-)
The arrangements are that, given they want to stick me on maintenance and not on observation, that I would have close to 50 or more days off this year. That's about 2 1/2 months and that it would be unfair on them to have to pay me sick pay for those. In addition, even though I might be deemed a "special case" the way that the contract of employment works is on three sicks you go on a sort of disciplinary procedure. Short of going around the office and telling everyone what is wrong with me (some know) that too would cause issues.
The best way forward is some form of contract or potentially to go part time but even that might prove hard to manage. I have put forward a document, contract and prices which are based on what I know from my last consultation. If that doesn't materialise then it would look a bit strange if I have priced not to be at the office and then I am.
For all sorts of reasons, not knowing complicates my life and I'd really like it all to be simple and straight forward from now on? :-)
Today is full of strange things for the Lodges like accounts, sorting out paperwork and checking on things. I need to sit down and get on with that without to many distractions. It is always unfortunate that this meeting and tomorrow's come one after the other like this.
Thursday, February 26, 2009
Hanging around waiting for something to happen
Strange as it may seem, I'm worried about NOT having any treatment. I've psyched myself up to have it and nothing has happened. It really is a strange old feeling because - in a way - I'm not missing getting whacked with BCG Immunotherapy treatments but at the back of my mind is the worry that if they wanted to do the precautionary stuff, why aren't they doing it?
It would just be nice to know what they have planned for me so I can also plan my future a bit better.
Uncertainty isn't great and I'd rather get any "shocks" out on the table now. If they are going to wait and scope me or biopsy me or treat it, just let me know - please :-)
It may sound silly but planning out your life around how well you might feel is actually quite difficult. I know what to expect so that if I know a start date I can work out that I am going to be better travelling and attending meetings than others. If I don't know I have to keep putting things off, just in case. I've been ruled too long by BC and was hoping that perhaps I'd dictate some times and plan things this year. looks like I am wrong.
Oh well - what will be will be I suppose!
It would just be nice to know what they have planned for me so I can also plan my future a bit better.
Uncertainty isn't great and I'd rather get any "shocks" out on the table now. If they are going to wait and scope me or biopsy me or treat it, just let me know - please :-)
It may sound silly but planning out your life around how well you might feel is actually quite difficult. I know what to expect so that if I know a start date I can work out that I am going to be better travelling and attending meetings than others. If I don't know I have to keep putting things off, just in case. I've been ruled too long by BC and was hoping that perhaps I'd dictate some times and plan things this year. looks like I am wrong.
Oh well - what will be will be I suppose!
Got to work
Felt somewhat worse for wear but managed to just about scrape through the day. I was nodding off at many points during the day and took myself out on a walk about a number of times. Thank goodness Friday is a day off as I'm just not sure I could have hacked another day of it.
Interestingly that is three Fridays off in three weeks but, I have had good reasons. The boss realises that I am struggling and is OK with it. He can see that work gets done and I am working as hard as I can but I just don't have the stamina for a full week.
We instigated a diet change today - shed loads of fibre and the like. That will now continue and I will try and get my body back to working properly and then try and get back to the balance.
Incidentally this was published today - it isn't rocket science - surely everyone should know this? However, eating properly reduces your cancer risks CLICK HERE.
I still think that it is all about balance and achieving what is right for you. It is difficult to find the balance that is right. Exercise, diet and not living like a hermit. Easier written than done, I can relay the problems and the issues with body balance that changing what you are used to or trying to eat what you may think is healthy without doing your homework. The near scare of almost being diabetic was more of a shock to me than the cancer! At least I pulled back from that one. The trouble is if you overdo it you have to wind back and sort out what didn't suit you and build again.
Anyway, I'm just going to have to get on with it and muscle on through it. You just can't do subtle when your fighting this one :-)
Interestingly that is three Fridays off in three weeks but, I have had good reasons. The boss realises that I am struggling and is OK with it. He can see that work gets done and I am working as hard as I can but I just don't have the stamina for a full week.
We instigated a diet change today - shed loads of fibre and the like. That will now continue and I will try and get my body back to working properly and then try and get back to the balance.
Incidentally this was published today - it isn't rocket science - surely everyone should know this? However, eating properly reduces your cancer risks CLICK HERE.
I still think that it is all about balance and achieving what is right for you. It is difficult to find the balance that is right. Exercise, diet and not living like a hermit. Easier written than done, I can relay the problems and the issues with body balance that changing what you are used to or trying to eat what you may think is healthy without doing your homework. The near scare of almost being diabetic was more of a shock to me than the cancer! At least I pulled back from that one. The trouble is if you overdo it you have to wind back and sort out what didn't suit you and build again.
Anyway, I'm just going to have to get on with it and muscle on through it. You just can't do subtle when your fighting this one :-)
Wednesday, February 25, 2009
Try again
I will try and see what tomorrow brings. It is one of those things I suppose - I read with disbelief that I am likely to get an attack of the "Chalfonts" now I am over 50 but that wasn't at all funny I have to say. Just because you are 50 doesn't mean your body can take unilateral strike action whenever it wants and without my brain's permission! :-)
I think that I will just have to work out a strategy to deal with everything going on and to alter my diet yet again to cope. I obviously need to continue to change my lifestyle gradually to help build me back up to being a fit person again. I think Homer and the Duff man have been leading me astray all along :-)
Right, bed, rest, sleep.
I think that I will just have to work out a strategy to deal with everything going on and to alter my diet yet again to cope. I obviously need to continue to change my lifestyle gradually to help build me back up to being a fit person again. I think Homer and the Duff man have been leading me astray all along :-)
Right, bed, rest, sleep.
A beer with Flocky Bicep
My Facebook message gave it away and Flocky knew I was at home (Facebook isn't encouraged at work). We met up for some beers and grub at one of my local Public Houses.
It was quite civilised and we had a few beers and some food and generally chatted around the usual, life, the universe and all that.
It was nice to get out. I cannot believe how run down I am. I still have the outward appearance and energy levels I used to but instead of being able to work full on for weeks, it could possibly be measured in hours these days.
If things weren't difficult enough with my ears still ringing and the deafness clicking in and out, the onset of an outbreak of the "Chalfonts" was the last thing I needed.
I feel that I just never seem to get well. I just get myself up and fit from something and thwack, something else comes along and knocks me down. Whether it is getting old or just the fallout from BC or a bit of both - who knows?
I just wish I could have a week where I felt good every day.
It was quite civilised and we had a few beers and some food and generally chatted around the usual, life, the universe and all that.
It was nice to get out. I cannot believe how run down I am. I still have the outward appearance and energy levels I used to but instead of being able to work full on for weeks, it could possibly be measured in hours these days.
If things weren't difficult enough with my ears still ringing and the deafness clicking in and out, the onset of an outbreak of the "Chalfonts" was the last thing I needed.
I feel that I just never seem to get well. I just get myself up and fit from something and thwack, something else comes along and knocks me down. Whether it is getting old or just the fallout from BC or a bit of both - who knows?
I just wish I could have a week where I felt good every day.
That wasn't good
After I wrote the blog things got a little nasty and I ended up feeling pretty crook. I didn't go to work today and my ears are ringing again. It is one of those stupid things and just demonstrates that I am still run down and still not quite right. I won't say too much about what then transpired but it rhymes with Farmer Giles!!
Post has just arrived - no word from the Hospital. No news is good news? Sometimes I suppose. I'm not sure what this means though. It is 5 weeks since I was there. Perhaps they are going to do the three month wait before treatment? I wish they'd tell me one way or the other.
Post has just arrived - no word from the Hospital. No news is good news? Sometimes I suppose. I'm not sure what this means though. It is 5 weeks since I was there. Perhaps they are going to do the three month wait before treatment? I wish they'd tell me one way or the other.
Tuesday, February 24, 2009
You both can't be right
So I met up with two guys - one at lunch and one in the evening. One says I look pale but a little better than last week when I looked positively cr@p and the other that I look great. One saw me last week the other in November.
Mmm?
Actually I'm a bit miffed as I ended up not getting home until 10:30 or so and have just eaten at 10:30 and I'm catching up with the day's events.
No word from the Hospital - I can't say that it is helping keep me steady at the moment - I really like to know what is happening.
On to p of that I am not feeling particularly great right now - I feel very tired and in need of hours sleep. I'm sure my body is screaming at me to go to bed for a week and I'm not giving in to it. Who will win the battle? Time will tell.
Mmm?
Actually I'm a bit miffed as I ended up not getting home until 10:30 or so and have just eaten at 10:30 and I'm catching up with the day's events.
No word from the Hospital - I can't say that it is helping keep me steady at the moment - I really like to know what is happening.
On to p of that I am not feeling particularly great right now - I feel very tired and in need of hours sleep. I'm sure my body is screaming at me to go to bed for a week and I'm not giving in to it. Who will win the battle? Time will tell.
Monday, February 23, 2009
Of course
Now it is near midnight I am wide awake. Surely your brain knows when it is time to switch the lights on and off?
Obviously some malfunction in my mind on that one.
I was rattling away today to sort out my treasurer's notes now I have my files back - it is quite funny in a way as it appears that the file is a week or so younger than the crash - it is still good but wasn't saved where I thought it might have been so perhaps it is a version before the crash. At least I have managed to recover to today's position and my bank balances actually balance - phew!
Off to bed now to see if I can get a reasonable amount of sleep for tomorrow - I am out lunchtime which will be nice. I can do with a bit of a laugh and a joke.
Obviously some malfunction in my mind on that one.
I was rattling away today to sort out my treasurer's notes now I have my files back - it is quite funny in a way as it appears that the file is a week or so younger than the crash - it is still good but wasn't saved where I thought it might have been so perhaps it is a version before the crash. At least I have managed to recover to today's position and my bank balances actually balance - phew!
Off to bed now to see if I can get a reasonable amount of sleep for tomorrow - I am out lunchtime which will be nice. I can do with a bit of a laugh and a joke.
Back to work and tired again
About 2 pm this time, I could barely keep my eyes open it just hits like a wave from nowhere. Asleep on the train on the way home so managed to get some rest. The thing is I don't feel physically tired - I feel really quite good walking to and from the station at both ends of the day. It just seems to be when I am sat at my computer at work.
Interesting week as I am taking Photos of the team and at the end of the week have two Lodge meetings one after the other on Friday and Saturday. The Saturday one is a biggie so I am taking Friday off to prepare.
Off out tonight and glad to say I can catch up on my accounts as the spreadsheets were recovered - yippee.
Interesting week as I am taking Photos of the team and at the end of the week have two Lodge meetings one after the other on Friday and Saturday. The Saturday one is a biggie so I am taking Friday off to prepare.
Off out tonight and glad to say I can catch up on my accounts as the spreadsheets were recovered - yippee.
Sunday, February 22, 2009
Late night
I tend now to find that if I have a few naps during the day that I lay awake at night. I have experienced this problem, along with others, since the trouble began. I'm still suffering some tinnitus and ears that keep going pop and clicking in and out of deafness. It seems to be OK one minute and not the next but is gradually getting better.
Tomorrow - the start of another week and I will take Friday off as a matter of course I think. I just found I have a batch of holidays to take off by the end of March and if the treat me too then I wont have many days to try and do that with.
Additionally I dropped a note to the Hospital today to see what has happened on my treatment. It has all gone very quiet at their end and whilst no news is good news - I am now wondering quite what they are going to do with me. I was certainly expecting to be in for maintenance by now although the note I got last time did question that after I had already had a year's worth.
So - off to bed and to see if I can actually sleep this time.
Tomorrow - the start of another week and I will take Friday off as a matter of course I think. I just found I have a batch of holidays to take off by the end of March and if the treat me too then I wont have many days to try and do that with.
Additionally I dropped a note to the Hospital today to see what has happened on my treatment. It has all gone very quiet at their end and whilst no news is good news - I am now wondering quite what they are going to do with me. I was certainly expecting to be in for maintenance by now although the note I got last time did question that after I had already had a year's worth.
So - off to bed and to see if I can actually sleep this time.
Cancer Buddies
I thought that THIS was interesting in today's BBC News.
A quote "People say they know how you feel, but they don't" from Ray Bryant kind of summed it up. No matter how you imagine it to be, it isn't anything like you thought it would be.
I still go back to the frequent catheterizations and explain that it isn't like you think it was going to be. In fact a number of the experiences just aren't in your every run of the mill day experience.
The buddy scheme and to some extent I hope recording what goes on in this blog - even the dull and boring - gets us away from the stigma and prejudice attached to cancer. Life goes on for more of us these days. Also, how you cope with treatments and what you do may be useful to someone else. No one told me at the hospital and tricks to combat the side effects. I devised that myself. That is the sort of thing that needs to be recorded so that others don't have to go through the same problems.
A quote "People say they know how you feel, but they don't" from Ray Bryant kind of summed it up. No matter how you imagine it to be, it isn't anything like you thought it would be.
I still go back to the frequent catheterizations and explain that it isn't like you think it was going to be. In fact a number of the experiences just aren't in your every run of the mill day experience.
The buddy scheme and to some extent I hope recording what goes on in this blog - even the dull and boring - gets us away from the stigma and prejudice attached to cancer. Life goes on for more of us these days. Also, how you cope with treatments and what you do may be useful to someone else. No one told me at the hospital and tricks to combat the side effects. I devised that myself. That is the sort of thing that needs to be recorded so that others don't have to go through the same problems.
Combating tiredness
I still find it surprising quite how much energy has been sapped out of me these past 31 months. I struggle to do a full days work at full speed unless I am really into it and excited by it. In the latter case, there is every possibility that I will pay for that with a day off work at some point in time. I get home so tired that I just about get a chance to eat and if I sit down, I sleep.
I have been trying to work out some sort of habit to get into that would involve some serious exercise to see if I can combat the tiredness with physical activity, losing weight, generally getting fitter, lowering blood pressure and so on. All the good things that exercise, added to my careful (but not Hermit like) diet already do. I had worked out that getting home from work would be a good time to do this. First thing in the morning should be avoided - it does more harm than good I am told. Anyway, it seems only logical that as I leave for work early that when I get home is the right time.
Why don't I? Because I am tired and listless and yawning and ready to fall asleep straight away. Before, when I was exercising every day (in the morning) I was actually working from home which made a big difference to me. Of course I wasn't doing myself any favours :-) I used to get up and then go do my exercise before Breakfast and then had a Shower. Then I could crack on with work, do my BP measurements and stats etc.
Working like I do now doesn't give me the personal time I had back then and I am often out - I was out three nights this week! That is irregular and so schedules aren't really going to work even though I need them for getting the habit of exercising.
I need to come up with something creative. One of the guys at work goes to the Gym, three times a week and in the nicer months, also goes running at lunch time. I don't fancy that at all as it would break my day up too much.
I'm sure I will come up with something.
I have been trying to work out some sort of habit to get into that would involve some serious exercise to see if I can combat the tiredness with physical activity, losing weight, generally getting fitter, lowering blood pressure and so on. All the good things that exercise, added to my careful (but not Hermit like) diet already do. I had worked out that getting home from work would be a good time to do this. First thing in the morning should be avoided - it does more harm than good I am told. Anyway, it seems only logical that as I leave for work early that when I get home is the right time.
Why don't I? Because I am tired and listless and yawning and ready to fall asleep straight away. Before, when I was exercising every day (in the morning) I was actually working from home which made a big difference to me. Of course I wasn't doing myself any favours :-) I used to get up and then go do my exercise before Breakfast and then had a Shower. Then I could crack on with work, do my BP measurements and stats etc.
Working like I do now doesn't give me the personal time I had back then and I am often out - I was out three nights this week! That is irregular and so schedules aren't really going to work even though I need them for getting the habit of exercising.
I need to come up with something creative. One of the guys at work goes to the Gym, three times a week and in the nicer months, also goes running at lunch time. I don't fancy that at all as it would break my day up too much.
I'm sure I will come up with something.
Saturday, February 21, 2009
Still not a word
I suddenly thought that I haven't received anything from the Hospital. I think I'd better drop an e-mail over to them if I haven't heard later this week. It seems strange that there isn't anything and it will be 5 weeks since I was told to go back onto maintenance.
A quick e-mail halfway through the week should suffice I hope.
Nice to have my old laptop back and with a new hard drive it has a new lease of life. It is actually my favourite machine as it has a big screen and is wide screen which I bought because I was away and could watch DVDs on it.
I have re-built it this afternoon - no great issues - lots of updates and patches to add and miracle or miracles, the man in the shop managed to save my files from the hard disk - which is great and so I don't need to try and do three years work again :-)
Mind you - let that be a warning - the hard drive is dead and yet he managed to pull off all my old files. Impressive stuff indeed.
A quick e-mail halfway through the week should suffice I hope.
Nice to have my old laptop back and with a new hard drive it has a new lease of life. It is actually my favourite machine as it has a big screen and is wide screen which I bought because I was away and could watch DVDs on it.
I have re-built it this afternoon - no great issues - lots of updates and patches to add and miracle or miracles, the man in the shop managed to save my files from the hard disk - which is great and so I don't need to try and do three years work again :-)
Mind you - let that be a warning - the hard drive is dead and yet he managed to pull off all my old files. Impressive stuff indeed.
To have or not to have that is the question
I re-read some of my posts and also noticed that Steve talks about having Bladder Cancer.
I wonder whether either of us actually do? I suppose it is pedantic semantics but they cut mine out and it hasn't come back for 18 months. Sure I'm still suffering from the after shocks and still being treated to keep it away but do I have it? I suppose it is as easy to say to people that you are "suffering from Bladder Cancer" as that is what is actually happening?
I still think that I AM suffering from Bladder Cancer even though the Cancer itself isn't there anymore. Of course, we all have the possibility of it coming back though, that really is the fear factor on this one.
I'm a little less buzzy today thank goodness. I am getting pretty excited about this business venture I have been working on for some time and it is all coming together and taking shape and finally we realise that there is a real leap forward and we can go and do something now - as we are, off the drawing board now.
Still - exciting times are ahead on that.
I wonder whether either of us actually do? I suppose it is pedantic semantics but they cut mine out and it hasn't come back for 18 months. Sure I'm still suffering from the after shocks and still being treated to keep it away but do I have it? I suppose it is as easy to say to people that you are "suffering from Bladder Cancer" as that is what is actually happening?
I still think that I AM suffering from Bladder Cancer even though the Cancer itself isn't there anymore. Of course, we all have the possibility of it coming back though, that really is the fear factor on this one.
I'm a little less buzzy today thank goodness. I am getting pretty excited about this business venture I have been working on for some time and it is all coming together and taking shape and finally we realise that there is a real leap forward and we can go and do something now - as we are, off the drawing board now.
Still - exciting times are ahead on that.
Friday, February 20, 2009
Friday - A Good Day
You know Andy P's news was great and it encourages all of us who have this funny old disease called cancer to look towards that day when we can say goodbye to the Hospital and the Doc for good.
Until that day - triumphs, like Andy's, makes it all more bearable.
Today I have been on a buzzzzzzzzzzzzzzzzzzzzzz. Yee Gods, have I ever been on a high caused through a meeting of minds on our business proposition and I was centre stage for a half an hour.
Tonight the curry club crew went out - 7 strong we were - and the most marvellous curry and good company was enjoyed by us all.
I was a little bit lively to start with but managed to suppress my adrenalin fueled buzz from the previous meeting thank goodness.
We had a great day business wise.
Just a good day - I am now home - very, very tired. Off to bed in a minute - I doubt I will need a nightcap to sleep!!
Until that day - triumphs, like Andy's, makes it all more bearable.
Today I have been on a buzzzzzzzzzzzzzzzzzzzzzz. Yee Gods, have I ever been on a high caused through a meeting of minds on our business proposition and I was centre stage for a half an hour.
Tonight the curry club crew went out - 7 strong we were - and the most marvellous curry and good company was enjoyed by us all.
I was a little bit lively to start with but managed to suppress my adrenalin fueled buzz from the previous meeting thank goodness.
We had a great day business wise.
Just a good day - I am now home - very, very tired. Off to bed in a minute - I doubt I will need a nightcap to sleep!!
Thursday, February 19, 2009
Time to Celebrate
Just had an e-mail from Andy P. It is great news - the best. He woke up without all the usual paraphernalia, and was told that all looks clear and he didn't need the biopsies, he has to go for a flexi in 6 months.
So:
That is the best news possible and I suggest choosing numbers on the Lottery immediately he is able.
So:
WELL DONE ANDY - WAY TO GO (whatever that means?)
That is the best news possible and I suggest choosing numbers on the Lottery immediately he is able.
Blogging mid afternoon - on a work day?
Yes, I finally had to give in and leave at 2 pm. I went for a walk and still kept falling asleep at my desk. That's dangerous for me but also other people so I decided to come home. It took all my concentration to stay awake on the express train as I might have ended up 60 miles away in Hastings if I'd have fallen asleep. I played loud music but still managed partial snoozing!
I am home and had a call just as I got here so I am in this sort of half life at the moment. I have that "stuffy head" which is screaming for sleep but not right this minute. I actually plan to wander downstairs and hit my favourite chair and have a snooze there after writing this. I am yawning away.
Andy P has hopefully had whatever it is by now and is drinking that nice cup of clear fresh water and fingers crossed all is working out well for him.
Me - that is it - I HAVE to go and get some rest - I have a big day tomorrow and must be ready for that.
I am home and had a call just as I got here so I am in this sort of half life at the moment. I have that "stuffy head" which is screaming for sleep but not right this minute. I actually plan to wander downstairs and hit my favourite chair and have a snooze there after writing this. I am yawning away.
Andy P has hopefully had whatever it is by now and is drinking that nice cup of clear fresh water and fingers crossed all is working out well for him.
Me - that is it - I HAVE to go and get some rest - I have a big day tomorrow and must be ready for that.
Wednesday, February 18, 2009
Dog tired - again
4pm and I was nodding off again at my desk, I had a double espresso - it did nothing! So I stood at my desk - making the place look untidy. I got my train, promptly slept all the way home (hope I didn't snore) missed a few phone calls too - I don't think my phone went off it may have gone to answer in one of the tunnels.
I see Steve K in the US is also suffering from tiredness. It is the one thing that I noticed either post BCG or Post operative. Strangely enough last year I was having massive fatigue and wasn't even able to get out of bed. I used to have to have the day off as I could sleep for hours.
I put it down to Post Cancer Fatigue and also that you whole body after BCG is out repairing cells, kicking out old ones and I think that the analogy to having post traumatic stress disorder is also - in a way - true too.
I think the only way out of this is to exercise, continue to eat properly and to ensure that you don't try and do too much. I certainly noticed that a few late nights and the payback is a few days afterwards as I can hardly keep my eyes open.
Andy P is due in to Hospital tomorrow and I have dropped him a line. He has had his TURBT and is going in for the 3 month check up. Lets' all wish him well and hope for a good outcome. Andy's staging is a lighter grade of cancer (can there be such a thing?) and he had a TURBT to get rid of it. Tomorrow he will find out the initial visual details and perhaps in a few weeks time hear what the next steps are.
For us all it means long term care, review etc. Which also begs the question - what on earth is happening to my treatment. I went to the Hospital on the 22nd January and it will be 4 weeks tomorrow and I haven't heard anything??
I see Steve K in the US is also suffering from tiredness. It is the one thing that I noticed either post BCG or Post operative. Strangely enough last year I was having massive fatigue and wasn't even able to get out of bed. I used to have to have the day off as I could sleep for hours.
I put it down to Post Cancer Fatigue and also that you whole body after BCG is out repairing cells, kicking out old ones and I think that the analogy to having post traumatic stress disorder is also - in a way - true too.
I think the only way out of this is to exercise, continue to eat properly and to ensure that you don't try and do too much. I certainly noticed that a few late nights and the payback is a few days afterwards as I can hardly keep my eyes open.
Andy P is due in to Hospital tomorrow and I have dropped him a line. He has had his TURBT and is going in for the 3 month check up. Lets' all wish him well and hope for a good outcome. Andy's staging is a lighter grade of cancer (can there be such a thing?) and he had a TURBT to get rid of it. Tomorrow he will find out the initial visual details and perhaps in a few weeks time hear what the next steps are.
For us all it means long term care, review etc. Which also begs the question - what on earth is happening to my treatment. I went to the Hospital on the 22nd January and it will be 4 weeks tomorrow and I haven't heard anything??
Tuesday, February 17, 2009
Tuesday - are you SURE it isn't Friday?
By 4 pm I was nodding off at my desk. I managed to hold off until 5 when I met my friend and went for a few beers and had my first Burger for what must be a year or more - Good Old Burger King!! We had a few beers and a burger, and got the 9 O' Clock train hence I am writing this at 9:45. My friend's wife also dropped me off home which was very nice indeed.
We had a long and interesting chat tonight and it was nice to get home at civilised hour. We often only just make the last train home! I suggested that we must be getting old if we were home by 10!
I cannot believe it is only Tuesday - so tired am I. I hope I manage the rest of the week :-)
We had a long and interesting chat tonight and it was nice to get home at civilised hour. We often only just make the last train home! I suggested that we must be getting old if we were home by 10!
I cannot believe it is only Tuesday - so tired am I. I hope I manage the rest of the week :-)
Monday, February 16, 2009
A first
This year - I actually drove my car for the first time in 2 months I guess. Was a bit surprised how fast it was and managed to out score the traction control at one point. Ooops. Nice to be back in the Cat though even if on a local journey.
Dear oh dear though I have been yawning all the way through the evening and the tinnitus is driving me mad today. I got to my destination in time for my ears to switch into "muffled in a tunnel" mode! Great - it made conversation very difficult indeed.
I can see that by the end of this week I will be having to have another rest as I am also out tomorrow night now too.
There is an underlying fatigue to just about everything I do these days. The utter fatigue can just switch on and you hardly know it is coming as you tend to feel tired all the time. Tonight - I just kept going and I am through it but there will be pay back somewhere and it will turn up when I least expect it.
I've started to have mild cold symptoms again today but so far it is just a runny nose - I want it to stay that way if possible. Not sure if I could cope with a second cold this year.
Dear oh dear though I have been yawning all the way through the evening and the tinnitus is driving me mad today. I got to my destination in time for my ears to switch into "muffled in a tunnel" mode! Great - it made conversation very difficult indeed.
I can see that by the end of this week I will be having to have another rest as I am also out tomorrow night now too.
There is an underlying fatigue to just about everything I do these days. The utter fatigue can just switch on and you hardly know it is coming as you tend to feel tired all the time. Tonight - I just kept going and I am through it but there will be pay back somewhere and it will turn up when I least expect it.
I've started to have mild cold symptoms again today but so far it is just a runny nose - I want it to stay that way if possible. Not sure if I could cope with a second cold this year.
Still nothing in the post
It is getting to be a bit of a waiting game. They haven't done this to me before and I am a bit surprised but perhaps it is that there isn't too much urgency and they will fit me in when they can. The later it gets now the nearer the operation will be to holiday time though so not sure about that.
I can only guess they are also catching up after the backlog caused by the weather too.
Whatever they are doing it is leaving me a bit in "no mans land" and I'm not a great lover of being hung out like this as I can't get on and plan things.
Work was a bit flat today - I couldn't get into my normal wit and repartee - I have been told to try harder tomorrow, so I will!
I can only guess they are also catching up after the backlog caused by the weather too.
Whatever they are doing it is leaving me a bit in "no mans land" and I'm not a great lover of being hung out like this as I can't get on and plan things.
Work was a bit flat today - I couldn't get into my normal wit and repartee - I have been told to try harder tomorrow, so I will!
Sunday, February 15, 2009
I wonder what the hold up is?
I heard from Andy P and he will be having his procedure on Thursday, in the morning and I'm glad that his BP has returned to normal.
Steve K has finished his BCG instillations on the day that this was published. It describes a "danger receptor" that may kick-start an immune reaction to cancer in the body has been uncovered by UK researchers.
Well Steve and I can tell you all about that with out BCG treatments because that is just what it does. Perhaps this will help us in the future and treatments will become more effective? Let's hope so for future sufferers. It would be nice if the could prevent it in the first place of course but the ongoing research certainly seems to be getting somewhere.
A bust week ahead for me - not sure if I will feel quite so keen come tomorrow though! I feel I could do with a break and I've only worked 4 days!!
Steve K has finished his BCG instillations on the day that this was published. It describes a "danger receptor" that may kick-start an immune reaction to cancer in the body has been uncovered by UK researchers.
Well Steve and I can tell you all about that with out BCG treatments because that is just what it does. Perhaps this will help us in the future and treatments will become more effective? Let's hope so for future sufferers. It would be nice if the could prevent it in the first place of course but the ongoing research certainly seems to be getting somewhere.
A bust week ahead for me - not sure if I will feel quite so keen come tomorrow though! I feel I could do with a break and I've only worked 4 days!!
Sleep
I again find myself sleeping in and although feeling the better for it - I find losing those hours annoying. I suppose it is just the body doing a repair job and I'll probably be grateful for the rest. I have a full week ahead of me and there are lots of things to be achieved.
Friday will be good as I have a meeting with my colleagues in my venture company and then I am going off for a curry evening which I intend to fully enjoy.
Friday will be good as I have a meeting with my colleagues in my venture company and then I am going off for a curry evening which I intend to fully enjoy.
Saturday, February 14, 2009
Working
It was a strange day as I was working most of it. I have been running some figures for a business I am involved with and needed to get some more details and my friend and I spent a lot of time going into the figures which I have just completed. Of course, I've done it again. I have been working all evening with figures and my head is doing mathematical calculations a plenty so I hope that I will actually get to sleep without too much trouble.
Everyone who sees me says I look well - which is good - at least the outside looks OK then! From the inside I still feel somewhat worn out. My ears are still giving me problems but again are getting better but ever so gradually.
As for the rest of me - I think all is OK but the wait to hear when treatment begins is unusual. Perhaps they are considering something else? Who knows - it will come soon enough but I'd like to know so I can plan things out.
It is half term week so Mrs. F. and the girls are off - I hadn't realised that until perhaps a day or so ago! I am at work next week and so will have to plan for time off together next time.
Everyone who sees me says I look well - which is good - at least the outside looks OK then! From the inside I still feel somewhat worn out. My ears are still giving me problems but again are getting better but ever so gradually.
As for the rest of me - I think all is OK but the wait to hear when treatment begins is unusual. Perhaps they are considering something else? Who knows - it will come soon enough but I'd like to know so I can plan things out.
It is half term week so Mrs. F. and the girls are off - I hadn't realised that until perhaps a day or so ago! I am at work next week and so will have to plan for time off together next time.
A full on day today
I am running another bit of work with a friend and we are meeting up today to go through some of the details. It is a strange thing working on a Saturday and back to my old days doing a bit of work at the weekends and evenings to catch up on things. This is a business plan and so it needs quite a bit of work to ensure that we have entered the figures correctly and also that they are realistic.
At least it will keep me out of the office for the day but not stop me working.
I've not heard back from the Hospital and so assume that I can go to work on Monday and be OK for going out Monday evening too. Perhaps I'll gt the letter next week?
On a sad note, the celebrity who had Cervical Cancer got the bad news yesterday after it having spread that there isn't a great deal to do and time is limited. Not sure quite how I'd feel about being given an 8 week diagnosis? Puts my problems into perspective.
At least it will keep me out of the office for the day but not stop me working.
I've not heard back from the Hospital and so assume that I can go to work on Monday and be OK for going out Monday evening too. Perhaps I'll gt the letter next week?
On a sad note, the celebrity who had Cervical Cancer got the bad news yesterday after it having spread that there isn't a great deal to do and time is limited. Not sure quite how I'd feel about being given an 8 week diagnosis? Puts my problems into perspective.
Friday, February 13, 2009
Blat
Well
I got the PC booked in, got some Valentines goodies. Then had a Bacon Sandwich and a cup of tea and hit the local pub. Called a friend of mine and ended up getting home - by taxi at 8 this evening. Ouch - I went out at 11 this morning.
However, I have had a very nice day out. I ensured I had plenty to eat as well as drink.
Slightly disappointed to find that my eldest is off to see her boyfriend tonight and that no one actually thought to let me know. I'm pretty sore about that - how difficult can it be to say that???
Dysfunctional can easily be applied sometimes to life here. I don't mind the fact that it happened but to tell me afterwards isn't exactly useful.
I got the PC booked in, got some Valentines goodies. Then had a Bacon Sandwich and a cup of tea and hit the local pub. Called a friend of mine and ended up getting home - by taxi at 8 this evening. Ouch - I went out at 11 this morning.
However, I have had a very nice day out. I ensured I had plenty to eat as well as drink.
Slightly disappointed to find that my eldest is off to see her boyfriend tonight and that no one actually thought to let me know. I'm pretty sore about that - how difficult can it be to say that???
Dysfunctional can easily be applied sometimes to life here. I don't mind the fact that it happened but to tell me afterwards isn't exactly useful.
A day off
I think I deserve a day off - a lie in this morning was nice until some numpty started phoning. However it was a good two or three hours longer than normal and so was still a good start.
I am just catching up on e-mails and everything else that has happened this week. Steve in the US has had his last BCG of this set without issues so that is good and he can relax for 2 or 3 months now. Not much on my case at all really. I still haven't heard back about their deliberations on Monday. I wonder whether there is a quandary brewing up as I have already had 1 year's maintenance and they want to do a second one. I suppose it must be a borderline case?
I am aiming to go down to the Computer Shop in a little while to see if they can save any of the data on my hard drive. If they can it will be a bonus - if not then a new hard drive can be fitted and I can reload the OS, drivers etc.
If they cannot find the two or three files I was working on then I am sort of screwed up and will have to work out quite how I present the accounts that I had actually completed and balanced for the last two years :-)!!
A nice slow day is required and sitting here blogging is not in today's list of relaxing activities.
I am just catching up on e-mails and everything else that has happened this week. Steve in the US has had his last BCG of this set without issues so that is good and he can relax for 2 or 3 months now. Not much on my case at all really. I still haven't heard back about their deliberations on Monday. I wonder whether there is a quandary brewing up as I have already had 1 year's maintenance and they want to do a second one. I suppose it must be a borderline case?
I am aiming to go down to the Computer Shop in a little while to see if they can save any of the data on my hard drive. If they can it will be a bonus - if not then a new hard drive can be fitted and I can reload the OS, drivers etc.
If they cannot find the two or three files I was working on then I am sort of screwed up and will have to work out quite how I present the accounts that I had actually completed and balanced for the last two years :-)!!
A nice slow day is required and sitting here blogging is not in today's list of relaxing activities.
Thursday, February 12, 2009
A very long day
It is 11 pm now. I left at 6:10 am. I had a very good journey to work, caught the connection - don't tell Mrs F but I then found a Greasy Spoon Cafe and had a full English Breakfast and two large mugs of tea before arriving at the venue.
The presentation went OK and the only problem was that I overloaded it with cases studies so I overran slightly :-) Anyway, I can repair that. We came back to London and got to the office in an hour and then went off to a Lodge meeting and a very nice meal at the Radisson in Covent Garden - Seven Dials. I had been invited out to another meeting on Wednesday night but I was worried I may have been post treatment and also that I would have today straight afterwards. A good move considering how tired I am.
Fast train home and when I got here a 1 1/2 mile walk home in the snow and sleet and slush. Remarkably one side of the road was covered and the other wasn't so it wasn't too bad a walk.
I am having tomorrow off - I need a rest. As for the remainder of my body - well my ears are ringing still but I feel a lot better I think for having gone back to work.
It was interesting as someone who is not in my office told me that the whole office has perked up which is a nice compliment - I hope I can live up to my hype!
The presentation went OK and the only problem was that I overloaded it with cases studies so I overran slightly :-) Anyway, I can repair that. We came back to London and got to the office in an hour and then went off to a Lodge meeting and a very nice meal at the Radisson in Covent Garden - Seven Dials. I had been invited out to another meeting on Wednesday night but I was worried I may have been post treatment and also that I would have today straight afterwards. A good move considering how tired I am.
Fast train home and when I got here a 1 1/2 mile walk home in the snow and sleet and slush. Remarkably one side of the road was covered and the other wasn't so it wasn't too bad a walk.
I am having tomorrow off - I need a rest. As for the remainder of my body - well my ears are ringing still but I feel a lot better I think for having gone back to work.
It was interesting as someone who is not in my office told me that the whole office has perked up which is a nice compliment - I hope I can live up to my hype!
Wednesday, February 11, 2009
One of those days tomorrow
It will be an interesting day as I am giving one of my first presentations to people who may use our services rather than talking to people whom I am trying to get to part with their money!
Then back to the Office and out for the evening. Interestingly they say there may be a little snow - Hope not too much. I decided to take Friday off as I would probably be too knackered to get up after this week and wrapping that up with a late night.
At least that gives me an opportunity to get he laptop sorted and to prepare for some work I am doing over the weekend.
I've heard nothing from the Hospital - I know they were looking at my case on Monday - I wonder what they decided to do???
Suppose I'll find out soon enough.
Then back to the Office and out for the evening. Interestingly they say there may be a little snow - Hope not too much. I decided to take Friday off as I would probably be too knackered to get up after this week and wrapping that up with a late night.
At least that gives me an opportunity to get he laptop sorted and to prepare for some work I am doing over the weekend.
I've heard nothing from the Hospital - I know they were looking at my case on Monday - I wonder what they decided to do???
Suppose I'll find out soon enough.
Bitter Pill
Bitter Pill, Biting the bullet and other such cliches spring to mind.
I thought it was quite funny how I can sagely give out advice:
"You should calm down a bit" "Get a job with less hours", "Take it easy now" etc
And yet ask myself to do it...
That is a TOTALLY different thing. I'm not absolutely sure I know what I am fighting against here. Consider what exactly would I be doing if I were back fire fighting on some of the jobs I used to be on. Away for a week at a time, working long hours, Hotel food day and night, too many beers and not enough good food. Things wouldn't be sustainable given treatment, fatigue and other such things.
I am being a real stick in the mud and resisting this change and I really would feel a fraud just "doing the minimum" and taking the cash and yet it is what a great deal of people do. I've had huge responsibility and real pressure and stress and targets to meet and all that stuff which I thrive on but taking it easy is probably the hardest, most stressful and difficult thing I have ever had to face in my career. It just never happens.
Funny old world isn't it?
I thought it was quite funny how I can sagely give out advice:
"You should calm down a bit" "Get a job with less hours", "Take it easy now" etc
And yet ask myself to do it...
That is a TOTALLY different thing. I'm not absolutely sure I know what I am fighting against here. Consider what exactly would I be doing if I were back fire fighting on some of the jobs I used to be on. Away for a week at a time, working long hours, Hotel food day and night, too many beers and not enough good food. Things wouldn't be sustainable given treatment, fatigue and other such things.
I am being a real stick in the mud and resisting this change and I really would feel a fraud just "doing the minimum" and taking the cash and yet it is what a great deal of people do. I've had huge responsibility and real pressure and stress and targets to meet and all that stuff which I thrive on but taking it easy is probably the hardest, most stressful and difficult thing I have ever had to face in my career. It just never happens.
Funny old world isn't it?
Tuesday, February 10, 2009
The hardest thing for me to do
If you know me - you'd know that the hardest thing for me is the drop out of light speed I have experienced in the past few years.
I've been what some would call a 'high flyer' although I'm - in my estimation - a troubleshooter who just uses common sense to sort out problems. I've worked with some of the top 100 companies in the world, I've been right up there - full on - working my bum off and being rewarded accordingly.
What is so difficult about slowing down, going native, doing the 9 to 5 and just doing what you need to do all the time and just being like "everyone else"?
I can't see it :-) Everyone I know can see it and tell me to slow down, take it easy, relax, do what you need to do, do the minimum, you've earned your rest and all the other phrases.
I have to tell you there is nothing quite so difficult as jumping from Light Speed to Impulse Engines only! The sudden stop is totally disconcerting and the idea that at 51 I am scrapyard material is truly one of my concerns. To do a 9 to 5 is again quite alien. To have time for friends and family is also foreign territory. To be in the house in the evenings and not just at night is a bit of a novelty too.
I suppose it is like stopping work and going into Retirement. What am I going to do and how am I going to cope with the change?
Today - I did do just what I needed to do and felt that I had delivered a good day's work - for some time I have felt that I haven't done that.
I am sure that this is just another string of things I need to come to terms with. Gee - 51 years old and wondering where my Zimmer Frame is...
I've been what some would call a 'high flyer' although I'm - in my estimation - a troubleshooter who just uses common sense to sort out problems. I've worked with some of the top 100 companies in the world, I've been right up there - full on - working my bum off and being rewarded accordingly.
What is so difficult about slowing down, going native, doing the 9 to 5 and just doing what you need to do all the time and just being like "everyone else"?
I can't see it :-) Everyone I know can see it and tell me to slow down, take it easy, relax, do what you need to do, do the minimum, you've earned your rest and all the other phrases.
I have to tell you there is nothing quite so difficult as jumping from Light Speed to Impulse Engines only! The sudden stop is totally disconcerting and the idea that at 51 I am scrapyard material is truly one of my concerns. To do a 9 to 5 is again quite alien. To have time for friends and family is also foreign territory. To be in the house in the evenings and not just at night is a bit of a novelty too.
I suppose it is like stopping work and going into Retirement. What am I going to do and how am I going to cope with the change?
Today - I did do just what I needed to do and felt that I had delivered a good day's work - for some time I have felt that I haven't done that.
I am sure that this is just another string of things I need to come to terms with. Gee - 51 years old and wondering where my Zimmer Frame is...
Still not right
But I am forcing myself to be. It is hard work being the office comedian but I keep getting moments of deafness and then clear and I still have tinnitus what a nightmare. This, of course, limits my ability to time jokes or think fast on my feet but we have had some laughs today which is encouraging.
Out tonight with my old school chums and looking forward to having a few beers.
So - work - well it is OK - I am at 75% pace at the moment and that is also OK. I have worked out to take my coat on and off on the train as it is so hot. It is like sitting in your front room with the fire on in all your outdoor gear. I really don't know how people manage it.
I am glad I gave up the Uni thing now though as the pressure is off and I can get my work done and not worry about running back here to do the next stuff. The reason is I am so tired - it really does take it out of - not surprisingly.
I hope to hear from the Hospital tomorrow about what they are going to do to me... I have also decided to take Friday off so that I can ease in rather than go crazy - I have a very busy day on Thursday too so don't fancy trying to drag myself up on Friday morning.
Out tonight with my old school chums and looking forward to having a few beers.
So - work - well it is OK - I am at 75% pace at the moment and that is also OK. I have worked out to take my coat on and off on the train as it is so hot. It is like sitting in your front room with the fire on in all your outdoor gear. I really don't know how people manage it.
I am glad I gave up the Uni thing now though as the pressure is off and I can get my work done and not worry about running back here to do the next stuff. The reason is I am so tired - it really does take it out of - not surprisingly.
I hope to hear from the Hospital tomorrow about what they are going to do to me... I have also decided to take Friday off so that I can ease in rather than go crazy - I have a very busy day on Thursday too so don't fancy trying to drag myself up on Friday morning.
Monday, February 09, 2009
For one minute
I nearly came home this morning - they run the trains at steam bath temperature (it can't be good for you). I had coat off, tie off, buttons undone and thought - I can't go on like this. It was a real claustrophobia moment. However, some deep breathing some music and just rationalising my thinking made it OK. I really don't like trains and being packed in at this time of year. How on earth people get on the train with scarves and hats and overcoats buttoned p the whole journey I don't know.
Coming home was OK as I got a reasonable seat and was able to settle in a bit and also I was going home!
I suppose it was just a blip although sometimes I do feel strange on trains especially underground ones. Maybe I've had enough - I think you probably do - I've lived in and around London my whole life and it isn't really an "old person's city" not that I'm that old but I enjoyed it when I was young and now it doesn't hold the excitement it used to, I certainly cant play hard all week and I'm not certain I'd enjoy it.
See what tomorrow brings I think - I hope the rain stops - it is pretty heavy and persistent out there at the moment.
Coming home was OK as I got a reasonable seat and was able to settle in a bit and also I was going home!
I suppose it was just a blip although sometimes I do feel strange on trains especially underground ones. Maybe I've had enough - I think you probably do - I've lived in and around London my whole life and it isn't really an "old person's city" not that I'm that old but I enjoyed it when I was young and now it doesn't hold the excitement it used to, I certainly cant play hard all week and I'm not certain I'd enjoy it.
See what tomorrow brings I think - I hope the rain stops - it is pretty heavy and persistent out there at the moment.
It saved the best until last
As I got out of the station it hammered down and has been all the way home - lots of little floods around - I imagine with the thaw that will just get worse! So I have arrived home wet through - not good. A quick change and hopefully none the worse.
Funny old day at work part good hearing part bad - managed the meeting and was OK with that - gave the boss an alternative way of employing me so hope that they can do that rather than me taking on a full time and ending up not working half the time :-) If you get three sickies in a row then you are on disciplinary as an employee (which I am not) so I explained that it would mean 1 lot of treatment and they'd have to do that! We agree to find an alternative to this as it isn't fair on either party.
Twas an OK day I think.
Funny old day at work part good hearing part bad - managed the meeting and was OK with that - gave the boss an alternative way of employing me so hope that they can do that rather than me taking on a full time and ending up not working half the time :-) If you get three sickies in a row then you are on disciplinary as an employee (which I am not) so I explained that it would mean 1 lot of treatment and they'd have to do that! We agree to find an alternative to this as it isn't fair on either party.
Twas an OK day I think.
It looks as cold and miserable out there
As I feel this morning. I'm wearing my walking gear to work as it is raining and miserable outside.
It will be interesting to get to work and I suppose I'll have the inevitable stream of people coming up to see how I am. So just remember to tell them you are OK and they will go away - let's not bore them with the facts and how I actually feel.
On another matter, it is amazing how people can't get on with one another = I have a dispute between two grown men to try and "manage" - I think banging their heads together might be a way forward. The trouble is - whatever the history that has gone on - I am no party to it and so can't hope to work it out and help them arbitrate. The Reason? I don't have time or patience for that sort of thing anymore. The sort of stuff that is left in my armoury would be "Get a Life", "Aren't you two a bit old for that?" and that sort of gun ship diplomacy.
Right - the dark, cold and damp morning awaits my emergence back onto the real world.
It will be interesting to get to work and I suppose I'll have the inevitable stream of people coming up to see how I am. So just remember to tell them you are OK and they will go away - let's not bore them with the facts and how I actually feel.
On another matter, it is amazing how people can't get on with one another = I have a dispute between two grown men to try and "manage" - I think banging their heads together might be a way forward. The trouble is - whatever the history that has gone on - I am no party to it and so can't hope to work it out and help them arbitrate. The Reason? I don't have time or patience for that sort of thing anymore. The sort of stuff that is left in my armoury would be "Get a Life", "Aren't you two a bit old for that?" and that sort of gun ship diplomacy.
Right - the dark, cold and damp morning awaits my emergence back onto the real world.
Sunday, February 08, 2009
Work - What's That?
It must be close to 6 weeks off work mustn't it? I can never remember being off that long even after the TURBT #1 which was pretty traumatic - I think I was working about 3 weeks after that for sure.
Well - I wonder if I will remember what to do? I don't actually fancy going back at all at the moment. I'm sort of nonplussed by it all and don't have the enthusiasm or energy. Maybe tomorrow I will get the buzz off of my people - they say they have missed me!
We will see I suppose.
One of the strange things about today has been that both girls have been out and so we had the house to ourselves which was quite nice. We went on our circular walk - it looks great in the snow and isn't too slush filled at the moment. Tomorrow could be different.
I;m still up quite late and need to just get my bag ready for tomorrow along with all my papers so that I can be ready to dash off in the morning.
Well - I wonder if I will remember what to do? I don't actually fancy going back at all at the moment. I'm sort of nonplussed by it all and don't have the enthusiasm or energy. Maybe tomorrow I will get the buzz off of my people - they say they have missed me!
We will see I suppose.
One of the strange things about today has been that both girls have been out and so we had the house to ourselves which was quite nice. We went on our circular walk - it looks great in the snow and isn't too slush filled at the moment. Tomorrow could be different.
I;m still up quite late and need to just get my bag ready for tomorrow along with all my papers so that I can be ready to dash off in the morning.
Whew those boys can blow down a Storm
The Scots were on top form - as we left at about 1:30 in the morning the piper was doing his party piece of pretending to be drunk playing the pipes - or maybe he was? No actually he was really funny and a most impressive musician.
I had a GREAT day out. The full Burns Supper, We got in at 1 pm and was greeted with a large tumbler of Scotch - very nice. It was a double double by the looks of it. Then a couple more before the meeting that started at 3 pm. We didn't finish dining until 10:45 and then went on to a club and carried on to about 1:30 as I got home about 2.
I am feeling remarkable well considering the quantity of scotch, beer, wine, port and more scotch and beer I had. My ear is much better :-) perhaps I should have been doing the scotch, beer, scotch treatment all along? and I can hear small noises now like my Vitamin C tablet fizzing in the glass this morning (I'm taking 1000mg daily of these).
SO, apart from missing the Rugby yesterday the meeting and the company more than made up for a really enjoyable day.
I was picked up and dropped off in my friend's Land Rover which is a full off road LH drive vehicle so it was a very strange trip to and from the place sitting in what is normally the driver's side. It was excellent at tackling some of the slush filled lanes.
I feel very much uplifted by the experience and much better today than for some time.
I had a GREAT day out. The full Burns Supper, We got in at 1 pm and was greeted with a large tumbler of Scotch - very nice. It was a double double by the looks of it. Then a couple more before the meeting that started at 3 pm. We didn't finish dining until 10:45 and then went on to a club and carried on to about 1:30 as I got home about 2.
I am feeling remarkable well considering the quantity of scotch, beer, wine, port and more scotch and beer I had. My ear is much better :-) perhaps I should have been doing the scotch, beer, scotch treatment all along? and I can hear small noises now like my Vitamin C tablet fizzing in the glass this morning (I'm taking 1000mg daily of these).
SO, apart from missing the Rugby yesterday the meeting and the company more than made up for a really enjoyable day.
I was picked up and dropped off in my friend's Land Rover which is a full off road LH drive vehicle so it was a very strange trip to and from the place sitting in what is normally the driver's side. It was excellent at tackling some of the slush filled lanes.
I feel very much uplifted by the experience and much better today than for some time.
Saturday, February 07, 2009
I need to raise my game today
I am off out of here at 12:30 then heading off in this lovely weather (we had a fresh fall of snow last night) to the meeting. We are going early so we have plenty of time for the journey (it is cross country from us up some "interesting lanes") and so my host can set up as he is Secretary of the Lodge.
I just went to check my wallet and I don't have enough money in there!!! Interesting - I wonder if Mrs. F has borrowed some for herself or the girls there was plenty in there earlier in the week! I will have to see what is lying around the house.
I'm certainly not feeling my normal chirpy and chipper self this morning and I'm not sure why. I'm still not much improved - my ears are clicking and popping again in and out of deafness - my stomach feels somewhat strange and I feel weak but that is maybe just coming out of this period of illness.
I need to grab myself something to eat and then go and get ready - we will not eat until this evening and I can imagine I'll be having the stomach rumbles if I do not.
I have no doubt that I will have a good time but I also need to be a sociable animal too. I hope that the Scots will make it down to this meeting through the snow and ice. They "make the meeting" with their Kilts and different Masonic Regalia, and for the meal afterwards. It is going to be a great day but I just need to raise my game.
I just went to check my wallet and I don't have enough money in there!!! Interesting - I wonder if Mrs. F has borrowed some for herself or the girls there was plenty in there earlier in the week! I will have to see what is lying around the house.
I'm certainly not feeling my normal chirpy and chipper self this morning and I'm not sure why. I'm still not much improved - my ears are clicking and popping again in and out of deafness - my stomach feels somewhat strange and I feel weak but that is maybe just coming out of this period of illness.
I need to grab myself something to eat and then go and get ready - we will not eat until this evening and I can imagine I'll be having the stomach rumbles if I do not.
I have no doubt that I will have a good time but I also need to be a sociable animal too. I hope that the Scots will make it down to this meeting through the snow and ice. They "make the meeting" with their Kilts and different Masonic Regalia, and for the meal afterwards. It is going to be a great day but I just need to raise my game.
Friday, February 06, 2009
What's gnawing away in the background
You know what it is? The little voice in the back of my head - you know what it is saying?
It is saying "How come, the last three lots of biopsies were clear and yet this one isn't?"
"Are these atypical cells down to the treatment, to the way they did the biopsies (I still reckon the cleaning lady did them!) or are they the beginnings of a recurrence?"
That's the bottom line, that is why I'm a little bit more upset than I probably need to be is that there is the very minutest doubt in my mind that this might be the start of a come back for the Big C. Now before you all rush and tell me it isn't, because it actually isn't, there is no use telling me, you need to speak to the little voice at the back of my head because in the back of everyone's head resides the little voice called doubt, the pessimist, the nuisance maker, the naughty kid in the classroom and all those things rolled into one. A little Sniper, firing off and sowing little seeds of doubt into your sub conscious just when you are about to go to sleep or when you are at your most vulnerable. The little voice tells you - you are going to die or other such niceties :-)
Sometimes the little voice is right and that's why I don't block it out. Sometimes it says that things don't look right, that's too good to be true, it is completely politically incorrect (good for it) and it questions everything and ridicules and challenges most things that I do.
I try not to take too much notice apart from the occasions where it has actually saved me from doing something I may have regretted but at the moment it is quite insistent that why should these results be different from the previous ones unless someone knowing that there wasn't cancer present really went and had a good look.
Mild Atypia it may be but then they use the word Superficial Bladder Cancer and I can assure anyone reading this that it is hardly superficial if you've actually got/had it!!
I think I will have a chat with my Urology Nurse when I next see her or I can e-mail and get an appointment if I am that worried about it. Normally my Urology Nurse will have the answer and she is discussing my case with the Consultant on Monday.
It is saying "How come, the last three lots of biopsies were clear and yet this one isn't?"
"Are these atypical cells down to the treatment, to the way they did the biopsies (I still reckon the cleaning lady did them!) or are they the beginnings of a recurrence?"
That's the bottom line, that is why I'm a little bit more upset than I probably need to be is that there is the very minutest doubt in my mind that this might be the start of a come back for the Big C. Now before you all rush and tell me it isn't, because it actually isn't, there is no use telling me, you need to speak to the little voice at the back of my head because in the back of everyone's head resides the little voice called doubt, the pessimist, the nuisance maker, the naughty kid in the classroom and all those things rolled into one. A little Sniper, firing off and sowing little seeds of doubt into your sub conscious just when you are about to go to sleep or when you are at your most vulnerable. The little voice tells you - you are going to die or other such niceties :-)
Sometimes the little voice is right and that's why I don't block it out. Sometimes it says that things don't look right, that's too good to be true, it is completely politically incorrect (good for it) and it questions everything and ridicules and challenges most things that I do.
I try not to take too much notice apart from the occasions where it has actually saved me from doing something I may have regretted but at the moment it is quite insistent that why should these results be different from the previous ones unless someone knowing that there wasn't cancer present really went and had a good look.
Mild Atypia it may be but then they use the word Superficial Bladder Cancer and I can assure anyone reading this that it is hardly superficial if you've actually got/had it!!
I think I will have a chat with my Urology Nurse when I next see her or I can e-mail and get an appointment if I am that worried about it. Normally my Urology Nurse will have the answer and she is discussing my case with the Consultant on Monday.
An afternoon full of popping ears
Every few minutes at the moment it is very strange all the pops and gurgling going on inside my head. Crazy times. I hope it settles down. Been in touch with work today and it looks as if my feet will not touch the ground next week there is so much to do.
Must be "something" about my shower
A couple of days ago my ear went deaf in the shower and today it popped back to almost, but not quite, normal. I suppose it is as you move your head around or stretch your head back it loosens up the tubes or something (obviously a technical term) and whilst I still have a bit of tinnitus it is much further away in the background. It is surprising how quickly you grow used to the noise in your ears, it was just downright annoying to start with now I can block most of it out.
I hope that it continues so that I am a bit more "with it" than I have been. I've been terribly slow - things have taken an age to get done and my brain isn't as quick as it used to be and I guess all the usual symptoms you get when trying to work when you have a cold or are ill.
So, the weekend beckons and work next week - that will be a shock to the system as I haven't been since the middle of December. People will wonder who I am.
I am looking forward to tomorrow with a Burns night supper and real Haggis and Highland Beef, a Piper and all the bits. It was great last year excepting that I had to drive myself and so was unable to join in the revelry. This year, I have a lift there and back and so I will be able to enjoy a few drams. It will be a long day - we are leaving here at 12:30 and probably wont be back until the wee hours of the morning.
So, things looking a bit better this morning and I hope that it will continue.
I hope that it continues so that I am a bit more "with it" than I have been. I've been terribly slow - things have taken an age to get done and my brain isn't as quick as it used to be and I guess all the usual symptoms you get when trying to work when you have a cold or are ill.
So, the weekend beckons and work next week - that will be a shock to the system as I haven't been since the middle of December. People will wonder who I am.
I am looking forward to tomorrow with a Burns night supper and real Haggis and Highland Beef, a Piper and all the bits. It was great last year excepting that I had to drive myself and so was unable to join in the revelry. This year, I have a lift there and back and so I will be able to enjoy a few drams. It will be a long day - we are leaving here at 12:30 and probably wont be back until the wee hours of the morning.
So, things looking a bit better this morning and I hope that it will continue.
Thursday, February 05, 2009
Getting back to work
I have made a commitment to go in on Monday as I have an important meeting that day and later in the week and need to prepare for them.
I actually feel a lot worse tonight than I have for a little while and young A has had to go to the GPs today for a very bad ear ache and is on the same sort of antibiotics I was on. I can only assume it is the same thing. The Doctor spoke to my wife and reckoned if I am not hearing properly in a couple of weeks time to come back and see him. Perhaps I have done some long term damage to my ear - although I have had almost full hearing back with it a couple of times it just keeps clicking in and out.
I hope that this clears up in time to go back though as it is just dragging on and on.
Keep taking the tablets :-)
I actually feel a lot worse tonight than I have for a little while and young A has had to go to the GPs today for a very bad ear ache and is on the same sort of antibiotics I was on. I can only assume it is the same thing. The Doctor spoke to my wife and reckoned if I am not hearing properly in a couple of weeks time to come back and see him. Perhaps I have done some long term damage to my ear - although I have had almost full hearing back with it a couple of times it just keeps clicking in and out.
I hope that this clears up in time to go back though as it is just dragging on and on.
Keep taking the tablets :-)
Might be something else happening now then
I got a letter confirming my mild atypia today - I believe that means the same thing as atypical cells :-)
As it was the first post we have had for 4 days I checked with the Hospital to make sure I wasn't due in on Monday. apparently not. They have been checking to see whether I had undertaken a full one-years worth of maintenance - which I have of course. Based on that, they will be making up their minds what to do with me on Monday.
It is therefore possible that the treatment plan will change given that it is to really rid me of the atypia. I now have to wait and see what they plan to do with me. from what I gathered last time it isn't the maintenance I had before which was 3 BCGs one a week , wait 9 weeks, 3 more one a week, wait 12 weeks, rigid cystoscopy, results back in 2 weeks and next course sorted from there. It sounded like (poor deaf person I am at the moment) that it would be 3 BCG at 3 monthly intervals with a rigid scope at 6 and 12 months.
Whatever it is, it means I don't have to worry about being off work next week on Monday and Tuesday. The week following is a different thing of course.
I don't think it is anything to concern myself about other than what regime I get put on and that it "does what it says on the tin" and gets me completely clean and clear. Whilst this doesn't sound like a big deal having mild atypia, it IS a big deal to me and it needs to get sorted. Hard to bring my mind around to the positives when I know I have to go through some more pretty serious treatments before we can be happy that it isn't the beginning of a recurrence.
Indeed, the fear is that this mild atypia is indeed the commencement of a recurrence although no one has said that or even intimated that to me. It sounds like a normal thing. Let's hope so.
As it was the first post we have had for 4 days I checked with the Hospital to make sure I wasn't due in on Monday. apparently not. They have been checking to see whether I had undertaken a full one-years worth of maintenance - which I have of course. Based on that, they will be making up their minds what to do with me on Monday.
It is therefore possible that the treatment plan will change given that it is to really rid me of the atypia. I now have to wait and see what they plan to do with me. from what I gathered last time it isn't the maintenance I had before which was 3 BCGs one a week , wait 9 weeks, 3 more one a week, wait 12 weeks, rigid cystoscopy, results back in 2 weeks and next course sorted from there. It sounded like (poor deaf person I am at the moment) that it would be 3 BCG at 3 monthly intervals with a rigid scope at 6 and 12 months.
Whatever it is, it means I don't have to worry about being off work next week on Monday and Tuesday. The week following is a different thing of course.
I don't think it is anything to concern myself about other than what regime I get put on and that it "does what it says on the tin" and gets me completely clean and clear. Whilst this doesn't sound like a big deal having mild atypia, it IS a big deal to me and it needs to get sorted. Hard to bring my mind around to the positives when I know I have to go through some more pretty serious treatments before we can be happy that it isn't the beginning of a recurrence.
Indeed, the fear is that this mild atypia is indeed the commencement of a recurrence although no one has said that or even intimated that to me. It sounds like a normal thing. Let's hope so.
How are you getting on now?
Met a lot of friends last night and each ask how I'm getting along and I noticed that the ones that "would" be interested I could tell them a bit more about what was going on and the other ones I could just tell them that things were OK, I was cancer free and that they were keeping me on medication and observation (that's almost true and enough information to be getting on with).
Steve Kelley puts a very good point here that there tends to be two reactions to people who have cancer and - uncomfortable as this is - they are:
1) You are going to die. Just a matter of how soon and how awful the process.OR
2) It's been removed and won't come back and really the whole thing is over and can be forgotten about.
These would be reactions from people who have never had cancer or don't understand some of the ongoing issues with it.
It is a sort of binary thing, you're ill or you're not. Of course, if this blog and Steve's blog say nothing else it is that the disease itself has far reaching affects on your life and with Bladder Cancer, which is treatable it can come back, it is like that and the biggest threat we live with is every time we go to have an operation or get checked is the worry that it is back. Again, you can treat that, although the thought of having a neobladder or a bag to go pee in for the rest of my life isn't high up on my list of things to do before I die.
It isn't, cut, cut, snip, snip all over and done with, it isn't a cold and that was what amused me last night. Very few people are as clued up about cancer as those who actually have it. I was surprised to find people who have it, although I don't talk to many of them, don't really have a clue about their Bladder Cancer, a lot of people take it all in their stride and get told that they are having this or that and go off and have the treatment and yet probably haven't read up about how it works, what it does, ways to alleviate side effects and so on. I wanted to know everything about it.
So back to the point - 90% of the people at the meeting last night only really wanted to hear that I was OK, over the worst, on the mend, doing well. 10% were interested in the ongoing but, frankly, there aren't many who would be interested in the detail - who would?
If I was to be really cruel - I can recount the stories of the Flexi or the BCG treatments - only a very few of my friends know about the grizzly bits. But it is fun occasionally to drop in a bit about having the BCG and how they instill it with a catheter with no local anaesthetic. You can see the guys curling up, going to grab their groins and going "urggghh" and pulling faces. I do stop it there though as if I were there I couldn't listen to what was going on. Amazing what you put up with and amazing what people don't know.
Steve Kelley puts a very good point here that there tends to be two reactions to people who have cancer and - uncomfortable as this is - they are:
1) You are going to die. Just a matter of how soon and how awful the process.OR
2) It's been removed and won't come back and really the whole thing is over and can be forgotten about.
These would be reactions from people who have never had cancer or don't understand some of the ongoing issues with it.
It is a sort of binary thing, you're ill or you're not. Of course, if this blog and Steve's blog say nothing else it is that the disease itself has far reaching affects on your life and with Bladder Cancer, which is treatable it can come back, it is like that and the biggest threat we live with is every time we go to have an operation or get checked is the worry that it is back. Again, you can treat that, although the thought of having a neobladder or a bag to go pee in for the rest of my life isn't high up on my list of things to do before I die.
It isn't, cut, cut, snip, snip all over and done with, it isn't a cold and that was what amused me last night. Very few people are as clued up about cancer as those who actually have it. I was surprised to find people who have it, although I don't talk to many of them, don't really have a clue about their Bladder Cancer, a lot of people take it all in their stride and get told that they are having this or that and go off and have the treatment and yet probably haven't read up about how it works, what it does, ways to alleviate side effects and so on. I wanted to know everything about it.
So back to the point - 90% of the people at the meeting last night only really wanted to hear that I was OK, over the worst, on the mend, doing well. 10% were interested in the ongoing but, frankly, there aren't many who would be interested in the detail - who would?
If I was to be really cruel - I can recount the stories of the Flexi or the BCG treatments - only a very few of my friends know about the grizzly bits. But it is fun occasionally to drop in a bit about having the BCG and how they instill it with a catheter with no local anaesthetic. You can see the guys curling up, going to grab their groins and going "urggghh" and pulling faces. I do stop it there though as if I were there I couldn't listen to what was going on. Amazing what you put up with and amazing what people don't know.
Wednesday, February 04, 2009
I shouldn't be fed up
The last post says it all some poor kid under 30 is in deep problems with cancer and there is me whinging on about my hearing and how I'm not at work and how rubbish I feel. I always did say I felt a bit of a fraud just having Bladder Cancer. I still feel that a bit - maybe it is the strange way that I deal with it? How did all those poor kids go "over the top" in WW1? they must have known what was out there but they still did it. Again, that's a strange way of dealing with it too.
Not sure that is relevant but it came into my head after watching "My Son Jack" on DVD - one I got for Christmas. Lots of people worse off than me but I still complain and as a few blogs before this probably note - it is after all - all about ME and perhaps I ought to realise that.
I was out tonight and again, was pretty deaf and it showed and I was really struggling to get things sorted out and then I got a lift near to my house and the walk across the main road and the snow was a whole new adventure! I think that whilst I feel guilty not to go into work, frankly I'd be surprised if I can actually get more than a few hundred yards without losing my footing or losing my balance due to my ears and the affect this is having on me.
Part of me says go to work and the other part is saying - are you an idiot? - How well do you think you actually are and what on earth are you going to achieve by doing this? I'm sorely tempted to go in on Friday if things are OK just to say hello. I may even just go in for a few hours if I can, show my ugly face and retreat. Frankly it is absolutely treacherous outside and they don't pay me enough and it isn't important enough. The snow will have to have gone significantly before I even venture out that far.
I fully intend to go to work next week - treatment - if we ever get any post and it is planned for me - permitting.
Anyway, I don't know, I'm just p1ssed off and annoyed and find this whole "being ill" stuff very difficult to deal with. I've said before that up until 30 months ago - I hadn't really been ill for 30 years and so coping with being ill, having a condition that could have (and still might) end up killing me are all new things to experience alongside, long periods of illness and all the other associated cr@p.
Not sure that is relevant but it came into my head after watching "My Son Jack" on DVD - one I got for Christmas. Lots of people worse off than me but I still complain and as a few blogs before this probably note - it is after all - all about ME and perhaps I ought to realise that.
I was out tonight and again, was pretty deaf and it showed and I was really struggling to get things sorted out and then I got a lift near to my house and the walk across the main road and the snow was a whole new adventure! I think that whilst I feel guilty not to go into work, frankly I'd be surprised if I can actually get more than a few hundred yards without losing my footing or losing my balance due to my ears and the affect this is having on me.
Part of me says go to work and the other part is saying - are you an idiot? - How well do you think you actually are and what on earth are you going to achieve by doing this? I'm sorely tempted to go in on Friday if things are OK just to say hello. I may even just go in for a few hours if I can, show my ugly face and retreat. Frankly it is absolutely treacherous outside and they don't pay me enough and it isn't important enough. The snow will have to have gone significantly before I even venture out that far.
I fully intend to go to work next week - treatment - if we ever get any post and it is planned for me - permitting.
Anyway, I don't know, I'm just p1ssed off and annoyed and find this whole "being ill" stuff very difficult to deal with. I've said before that up until 30 months ago - I hadn't really been ill for 30 years and so coping with being ill, having a condition that could have (and still might) end up killing me are all new things to experience alongside, long periods of illness and all the other associated cr@p.
Saw this which amused me
Apparently this is a real photo:
These workmen are installing bollards to stop nurses from parking on the pavement outside the Royal Hospital in Belfast. They are cleaning up at the end of the day. How long do you think it will be before they realise that they can't go home?
My Topsy Turvy World
Had a shower this morning and POP - deaf in my left ear. Not water in there - I'm very careful about that. So I'm back to being partially deaf again this morning, there isn't any pressure on the ear and it is crackling and popping away in there :-) it just means that I'm still not fixed yet.
On a sad note I see that a young "celebrity" here in the UK has got major problems now with her cancer and it has spread and has been described as "Aggressive" which I imagine is another one of those words you really don't want to hear when you have cancer. Like "Riddled", "Inoperable" and so on. In a way, whilst it is a tragedy for her and her children and she is only in her late 20s, it is a wake up call for me. My goodness, how would I cope with any of that, I'm really lucky in that it is under control and that brought my upcoming treatment into some sharp focus. What this next lot of treatment does is very much a belt and braces approach to the situation. It takes the approach that whilst we all probably have atypical cells, the ones they found in me ought to be treated as potentially nasty and so lets Zap them anyway.
Topsy Turvy world? Choppy Waters and back on the Roller Coaster - it will be OK in a few weeks when I get the timings of my treatments, get back into the flow of that, sort out my exercise and eating regimes and get fit again and begin to feel well and good about myself. This last month's turn of events has really laid me low and whilst I sound fed up and annoyed I'm still optimistic and looking forward - I know it will all change and sometimes, with something like this it can be in a few hours and the colds gone, your hearing is back and you feel good again. It just seems to be taking a long time to come along.
On a sad note I see that a young "celebrity" here in the UK has got major problems now with her cancer and it has spread and has been described as "Aggressive" which I imagine is another one of those words you really don't want to hear when you have cancer. Like "Riddled", "Inoperable" and so on. In a way, whilst it is a tragedy for her and her children and she is only in her late 20s, it is a wake up call for me. My goodness, how would I cope with any of that, I'm really lucky in that it is under control and that brought my upcoming treatment into some sharp focus. What this next lot of treatment does is very much a belt and braces approach to the situation. It takes the approach that whilst we all probably have atypical cells, the ones they found in me ought to be treated as potentially nasty and so lets Zap them anyway.
Topsy Turvy world? Choppy Waters and back on the Roller Coaster - it will be OK in a few weeks when I get the timings of my treatments, get back into the flow of that, sort out my exercise and eating regimes and get fit again and begin to feel well and good about myself. This last month's turn of events has really laid me low and whilst I sound fed up and annoyed I'm still optimistic and looking forward - I know it will all change and sometimes, with something like this it can be in a few hours and the colds gone, your hearing is back and you feel good again. It just seems to be taking a long time to come along.
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