I'm a bit of a "cold fish" not my ideal description of myself (someone else's) but it will do. Strangely for me then, I'm feeling really quite upset now after this morning. I think I was brassing it out a bit this morning but coming back and seeing my daughter and talking with her has sort of triggered me off now.
No one ever said it was a fair world, it can be horribly cruel though. Cracking a few heads and making people realise this is an uphill battle, it doesn't matter until it touches you. The constant is you know the guy you are going to talk tomorrow is a "Dick" and will remain so and you know that some idiot is going to cut you up on the motorway doing 80 who hasn't thought through the consequence of their actions. These are all the people who should be introduced to tragedy but we all know they wont change you can't easily adjust people's attitudes and behaviour like that. It would be good if you could though!
There is quite a bit of anger about my feelings though, things like injustice and human rights and doing the right thing and yet these people, who have had enough problems to go through in the past, get this to contend with. Surely they have been tested enough and neither deserved or warranted such a cruel twist of fate. I could go on but I've rambled enough about fairness.
Thursday, July 12, 2007
One too many
As my friend said to me - "If I ever have to go to another one, it will be two too many".
I cannot even begin to tell you how sad it was today. The drizzle persisted at the grave side and I don't think I have ever felt such sadness as I did for my friends. Life can be downright cruel. One baby dead the other in high dependency. Every time you look at the survivor, what would go through your mind, every sports day, every prize giving. It sends a shudder down my spine just contemplating it.
I'm glad I made the journey and provided what meagre support I could - didn't say much - what can you say? Just a terribly sad day.
I cannot even begin to tell you how sad it was today. The drizzle persisted at the grave side and I don't think I have ever felt such sadness as I did for my friends. Life can be downright cruel. One baby dead the other in high dependency. Every time you look at the survivor, what would go through your mind, every sports day, every prize giving. It sends a shudder down my spine just contemplating it.
I'm glad I made the journey and provided what meagre support I could - didn't say much - what can you say? Just a terribly sad day.
Wednesday, July 11, 2007
I am not looking forward to tomorrow
I've never been to a child's funeral before let alone a baby's one. It is just so tragic and these things happen even in this day and age and advanced procedures and medicines.
The trouble is, with all these things, you feel so utterly helpless. There really isn't a thing you can do to help. I was thinking about that with what I went through and the reactions I got. I met a firend - haven't seen her for 15 months or more I guess - so she had no idea that I had had cancer and why should she, I didn't tell everyone. She was sorry and what for? I'm sorry but I decided to use my body like a refuse cart for years and I can feel sorry for being a bit of an arse but why should someone who has no control over things be sorry? So it is a bit like that tomorrow, what am I going to say and how am I going to react? Don't know, I'll have to see how I do and report back.
The trouble is, with all these things, you feel so utterly helpless. There really isn't a thing you can do to help. I was thinking about that with what I went through and the reactions I got. I met a firend - haven't seen her for 15 months or more I guess - so she had no idea that I had had cancer and why should she, I didn't tell everyone. She was sorry and what for? I'm sorry but I decided to use my body like a refuse cart for years and I can feel sorry for being a bit of an arse but why should someone who has no control over things be sorry? So it is a bit like that tomorrow, what am I going to say and how am I going to react? Don't know, I'll have to see how I do and report back.
And my Doctor
Who I like to pieces is unable to be funded for more than a day a week at the Surgery. He is the best communicator and most amiable GP I have ever met. I don't know - we should be encouraging people like him not messing them about.
Why can't we do the right things right anymore in this country? The wishy washy politically correct liberals ought to be lined up and kicked in the genitals. In fact I reckon I could impress them with my catheter insertion technique. In all the confusion I can't remember if I used five or six catheters. Well do you feel lucky punk? :-)
Why can't we do the right things right anymore in this country? The wishy washy politically correct liberals ought to be lined up and kicked in the genitals. In fact I reckon I could impress them with my catheter insertion technique. In all the confusion I can't remember if I used five or six catheters. Well do you feel lucky punk? :-)
What is it about July
I heard another person I know died on Saturday. Three funerals this week, there were three or four last week, now one next week. Perhaps it is my age and I've reached that age where people that I know are getting towards the end of the journey?
I also notice on a number of membership lists that I am now in the top third on the list.
I suppose the next steps is to complain that the Doctors and Policemen are looking younger and I can be welcomed to old age! :-)
I also notice on a number of membership lists that I am now in the top third on the list.
I suppose the next steps is to complain that the Doctors and Policemen are looking younger and I can be welcomed to old age! :-)
Tuesday Night Again
Very little sleep and the previous post too - my brain is in a whir on a Tuesday night/Wednesday morning. I hope that goes away now I've completed the treatments.
A tiny bit of overreaction on re-reading the post below perhaps but we will see. I'll keep an eye out for this. Perhaps I need that holiday after all?
A tiny bit of overreaction on re-reading the post below perhaps but we will see. I'll keep an eye out for this. Perhaps I need that holiday after all?
A Mixed Evening
I ended up going out and enjoying the evening but not enjoying some of the observations about me.
I've changed - there is no doubt about that. However, what I took away tonight was that my "clarity of vision" is perhaps not in every-one's comfort zone and not what everyone wants to hear. Not to every one's taste perhaps.
OOops.
I do tend to forget that I speak a language that I didn't even a year ago. Still English but a more direct version! Even at this time a year ago I only thought I might have cancer - I was still hoping it was a Kidney infection but deep down inside I knew what it really was. So - back to this language thing. I couldn't have coped with someone like me back then telling me about ramming things up my nether regions and all that blood and gore - I'd have had to excuse myself and leave the conversation as I'd have felt quite ill. I'd probably never have told people - to their face - how it was - how I felt - what I REALLY felt or whether I agreed with them or not. I was in those days a diplomat. I found out tonight that I probably don't do any of the "people friendly" or "politically correct" stuff anymore.
To some extent, there is a freedom piece in me that says - why bottle it up anymore, why be the "nice guy" when I have a new angle on things? Not that I am right, just that things to me look so different now that it doesn't matter? That, perhaps, is an over simplification of the thing I am trying to say. Which is (and I may change this subsequently):
As much as I like to think that I've "learnt a thing or two" I'm actually quite injured to find that I might be upsetting people along the way. I do find myself stopping at the "shock" stuff these days. I honestly don't think it is that bad - I had a rough time of it yesterday but, it isn't that bad compared to what other people have to suffer.
I probably need to go and think all this through as it would disturb me if I was really like that.
I've changed - there is no doubt about that. However, what I took away tonight was that my "clarity of vision" is perhaps not in every-one's comfort zone and not what everyone wants to hear. Not to every one's taste perhaps.
OOops.
I do tend to forget that I speak a language that I didn't even a year ago. Still English but a more direct version! Even at this time a year ago I only thought I might have cancer - I was still hoping it was a Kidney infection but deep down inside I knew what it really was. So - back to this language thing. I couldn't have coped with someone like me back then telling me about ramming things up my nether regions and all that blood and gore - I'd have had to excuse myself and leave the conversation as I'd have felt quite ill. I'd probably never have told people - to their face - how it was - how I felt - what I REALLY felt or whether I agreed with them or not. I was in those days a diplomat. I found out tonight that I probably don't do any of the "people friendly" or "politically correct" stuff anymore.
To some extent, there is a freedom piece in me that says - why bottle it up anymore, why be the "nice guy" when I have a new angle on things? Not that I am right, just that things to me look so different now that it doesn't matter? That, perhaps, is an over simplification of the thing I am trying to say. Which is (and I may change this subsequently):
- That I am not entirely comfortable with the person I am at the moment. I am more brash, self assured and in your face than I ever have been. I'm pretty good at reading how things are and knowing how to tackle these but, it appears, that I now freely let people have the benefit of my insight.
- That like it or not, there have been some major changes in the last 12 months that I don't see
- I'm probably not the nicest person to be around anymore as I do things that please me not anyone else
- Worse still that I probably don't give a sh1t about whether or not it matters (although I'm not sure I am that bad or that selfish).
As much as I like to think that I've "learnt a thing or two" I'm actually quite injured to find that I might be upsetting people along the way. I do find myself stopping at the "shock" stuff these days. I honestly don't think it is that bad - I had a rough time of it yesterday but, it isn't that bad compared to what other people have to suffer.
I probably need to go and think all this through as it would disturb me if I was really like that.
Tuesday, July 10, 2007
Getting better
As the day wears on but I've also gone and had some more pain killers at lunchtime and that appears to have done it I feel a lot better now although still beaten up a bit.
I'm really quite pleased that this is the last one of the 6. I can see how some people would want to give up if it does this to you on a regular basis.
I'm really quite pleased that this is the last one of the 6. I can see how some people would want to give up if it does this to you on a regular basis.
Gradually
I am getting back to some normality. I wonder if sticking that Catheter into you straightens you out or bruises or scratches you. I don't know but it is darn difficult to go to the loo at the moment without it making you go Ohhhh or Owwww or some such expletive.
At least the pills kicked in nicely and so whilst I can feel somewhat sore around the middle at least I can move around without too much difficulty.
At least the pills kicked in nicely and so whilst I can feel somewhat sore around the middle at least I can move around without too much difficulty.
Future Treatment
I got a surprise yesterday.
The Urology Nurses always say that if we meet again that it is a GOOD thing as that means that you are on maintenance and can also tolerate the treatment. It means that they are keeping their eye on you. Maintenance (and I keep banging on about this) is where - if you are clear, you get 3 shots of BCG, they wait a period of time and you get a flexible cystoscopy and if still clear you get another 3 shots and wait a longer period and get another 3 and so on until it gets to a point that if you have had no recurrence in the gap in between (which is then measured in years) - you are nigh on cured.
So the surprise came when she said that I might not need any further treatments at all. Now that IS a surprise. I'm still of the opinion that I'll need them only because of the staging and grade of the original tumour. Whilst it was called "superficial" it was anything but.
I'll have to wait and see but no treatments just a peek and poke every 3 or 6 months. Given the working over I had yesterday, I can see that it would be nice not to but these odd days of getting the stuffing knocked out of you are actually doing you good.
Always thought it was a perverse thing to say that the stuff that was making you better does it by making you feel bad? Where was Mary Poppins when I needed her? Not that sugar in my medicine would have made it any better!
The Urology Nurses always say that if we meet again that it is a GOOD thing as that means that you are on maintenance and can also tolerate the treatment. It means that they are keeping their eye on you. Maintenance (and I keep banging on about this) is where - if you are clear, you get 3 shots of BCG, they wait a period of time and you get a flexible cystoscopy and if still clear you get another 3 shots and wait a longer period and get another 3 and so on until it gets to a point that if you have had no recurrence in the gap in between (which is then measured in years) - you are nigh on cured.
So the surprise came when she said that I might not need any further treatments at all. Now that IS a surprise. I'm still of the opinion that I'll need them only because of the staging and grade of the original tumour. Whilst it was called "superficial" it was anything but.
I'll have to wait and see but no treatments just a peek and poke every 3 or 6 months. Given the working over I had yesterday, I can see that it would be nice not to but these odd days of getting the stuffing knocked out of you are actually doing you good.
Always thought it was a perverse thing to say that the stuff that was making you better does it by making you feel bad? Where was Mary Poppins when I needed her? Not that sugar in my medicine would have made it any better!
Trying to get back to bed was crazy
Phone calls, door bell.
So I've had a shower, had my usual morning meds and also now had some ibuprofen and paracetamol which I am hoping will take some of this throbbing (the only word I can think that describes it) away. I feel like I have been punched in the stomach or just below and am sore all around my middle. I daren't tell you what the other part of my anatomy is feeling but it isn't at all pleasant :-)
So thank goodness the last one for a while. I have a feeling this will take most of the week to recover from.
So I've had a shower, had my usual morning meds and also now had some ibuprofen and paracetamol which I am hoping will take some of this throbbing (the only word I can think that describes it) away. I feel like I have been punched in the stomach or just below and am sore all around my middle. I daren't tell you what the other part of my anatomy is feeling but it isn't at all pleasant :-)
So thank goodness the last one for a while. I have a feeling this will take most of the week to recover from.
Ow - Knocked sideways
I've just got up and got myself a drink but I'm going to go back to bed. I'm still getting bladder spasms and it hurts to pee. This morning there isn't any debris or blood but last night was pretty bad.
More reports later. Probably the second worst side effects I have ever had. If I hadn't of had the pain killers then this could easily rank as the worst. I'm sure that is the nearest a bloke can get to feeling like he has given birth :-)
More reports later. Probably the second worst side effects I have ever had. If I hadn't of had the pain killers then this could easily rank as the worst. I'm sure that is the nearest a bloke can get to feeling like he has given birth :-)
Monday, July 09, 2007
Not a good one
Are there any good ones?
Wallop - this is turning out to be a thwack with the man in the truck again. I'm just going downstairs for some food and some more tablets - my bladder is palpitating and it must sound like I'm giving birth when I go to the loo :-)
More tomorrow. Ouch!
Wallop - this is turning out to be a thwack with the man in the truck again. I'm just going downstairs for some food and some more tablets - my bladder is palpitating and it must sound like I'm giving birth when I go to the loo :-)
More tomorrow. Ouch!
Last time for a while that I need to do this
This? Going through my little rituals prior to having my treatment.
I cannot drink for 2 hours prior to having my treatment so I eat before 12 and have a cup of soup then. I will, in fact, not normally drink after 11:30 or earlier.
Other things like having a shave, getting ready, getting appointment cards and stress balls together, preparing the bedroom and toilet areas all eat up time in my ritual so that we can get to the Hospital, get in and get seen around about 2 pm and then get back and go through all the turning, pill popping and so on.
Curiously the things you miss are those little rituals - not for long though.
One of the things I don't do now is get down in time to watch the News anymore. I'm no longer ill or unemployed and so other things have taken over.
If all goes according to plan - then I should be back on the BCG regime in November or possibly December (I hope not then). That
I cannot drink for 2 hours prior to having my treatment so I eat before 12 and have a cup of soup then. I will, in fact, not normally drink after 11:30 or earlier.
Other things like having a shave, getting ready, getting appointment cards and stress balls together, preparing the bedroom and toilet areas all eat up time in my ritual so that we can get to the Hospital, get in and get seen around about 2 pm and then get back and go through all the turning, pill popping and so on.
Curiously the things you miss are those little rituals - not for long though.
One of the things I don't do now is get down in time to watch the News anymore. I'm no longer ill or unemployed and so other things have taken over.
If all goes according to plan - then I should be back on the BCG regime in November or possibly December (I hope not then). That
Disruption
It is amazing how disruptive having the treatments has been. Monday afternoon and much of Tuesday can be written off through recovery. Occasionally I can get some work done on Tuesday afternoon.
I have been loathe to drive too far on Wednesday for comfort reasons and also that I'm still not quite right. I can work at home and I can travel short distances but I couldn't easily walk to the station - be on my feet all day or drive further than about 30 minutes and then not in heavy traffic.
It makes trying to get things done interesting. I was looking at my schedule this week and frankly it is a nightmare. Compressing everything into three and a half days and restricting travel to Thursday and Friday do make challenges for scheduling my time. Given that I only have 8 1/2 working days left before my party and holiday also have come as a bit of a shock so - I am spending a bit of time arranging a schedule to get everything done.
I have been loathe to drive too far on Wednesday for comfort reasons and also that I'm still not quite right. I can work at home and I can travel short distances but I couldn't easily walk to the station - be on my feet all day or drive further than about 30 minutes and then not in heavy traffic.
It makes trying to get things done interesting. I was looking at my schedule this week and frankly it is a nightmare. Compressing everything into three and a half days and restricting travel to Thursday and Friday do make challenges for scheduling my time. Given that I only have 8 1/2 working days left before my party and holiday also have come as a bit of a shock so - I am spending a bit of time arranging a schedule to get everything done.
Sunday, July 08, 2007
Perversely looking forward to tomorrow
The last treatment of this set of six. I can see why a lot of people find them difficult to live with but it must be the same for anyone on Chemo or Radio as well. I feel I just get myself back to normal and feel better again when I have to go and have another and whatever side effects you get.
Bizarrely I find the fact that I am having these treatments to be a good thing. It means that everything I went through has had some result and some outcome and that this, unpleasant as it may appear to most and as tear jerking and scrotum clenching as it may sound, is probably a better thing, given my circumstances than the alternatives. You have to have been there and reviewed the possibilities to understand this though.
So tomorrow is another one of those milestones. It means the end of this lot of treatment and the stop watch now starts for three months to go back in and have the next operation for biopsies. I don't fancy that of course but I (again) have no option.
So getting tomorrow out of the way means that I can - in a week or so - restart my exercise regime - yes I stopped - as I just didn't feel fit enough to do it - :-) I can also forget about having Monday and Tuesday as days out from work or anything else I do.
In addition, I can look forward to the summer off and perhaps spend some time with the family - if I've done nothing else this past year I deserve some time to spend with them considering all the time they have spent with me.
So - out of the way at last. I make it that in the 53 weeks since I first noticed the symptoms that I have had something like 12 weeks under these treatments, 9 weeks in operations and recovery mode, a week in and out of my GP and for tests for that and a lot of odd days here and there in between mooching about. That is about 22 weeks - goodness knows what I have done with the other 30 weeks - written this blog I've no doubt :-)
Bizarrely I find the fact that I am having these treatments to be a good thing. It means that everything I went through has had some result and some outcome and that this, unpleasant as it may appear to most and as tear jerking and scrotum clenching as it may sound, is probably a better thing, given my circumstances than the alternatives. You have to have been there and reviewed the possibilities to understand this though.
So tomorrow is another one of those milestones. It means the end of this lot of treatment and the stop watch now starts for three months to go back in and have the next operation for biopsies. I don't fancy that of course but I (again) have no option.
So getting tomorrow out of the way means that I can - in a week or so - restart my exercise regime - yes I stopped - as I just didn't feel fit enough to do it - :-) I can also forget about having Monday and Tuesday as days out from work or anything else I do.
In addition, I can look forward to the summer off and perhaps spend some time with the family - if I've done nothing else this past year I deserve some time to spend with them considering all the time they have spent with me.
So - out of the way at last. I make it that in the 53 weeks since I first noticed the symptoms that I have had something like 12 weeks under these treatments, 9 weeks in operations and recovery mode, a week in and out of my GP and for tests for that and a lot of odd days here and there in between mooching about. That is about 22 weeks - goodness knows what I have done with the other 30 weeks - written this blog I've no doubt :-)
Not alone
I'd rather I was the only one suffering from cancer but you find that there are lots of you around. It is a bit like buying a Green Mondeo and then driving around and seeing every other car is the same as yours (well almost).
You talk to people and it comes out that you have cancer or are being treated to keep it away and then they tell you they have it or you talk to someone else and they tell you that someone else in the village has it and that comes as a shock. I almost fell into my trap the other day and said "they don't look like they've got cancer". I should know better. Both of my friends who's funerals are this week did - I am afraid to say - look as if they had cancer but treatment makes you loose your hair, jaundice and other physical signs also make you realise.
Apparently I just looked drawn and greyish. I was also a couple of stone heavier than I was when I went in. However I don't think I actually looked "ill"
So enough for now - the Tour is on the TV and I need to get ready to work out how in the household we can get to watch F1, the Men's Tennis (wife and 2 girls will watch that) and the Tour all at the same time! I have enough TVs and PCs with TV cards to do this - I need a plan that delivers the Wide Screen TV in the front room to me without it appearing that I planned it that way. If I offer to let the spend money at Bluewater - they'll smell a rat. Off now to work on my cunning and devious plan for World (no scrub that) total TV domination!!!
You talk to people and it comes out that you have cancer or are being treated to keep it away and then they tell you they have it or you talk to someone else and they tell you that someone else in the village has it and that comes as a shock. I almost fell into my trap the other day and said "they don't look like they've got cancer". I should know better. Both of my friends who's funerals are this week did - I am afraid to say - look as if they had cancer but treatment makes you loose your hair, jaundice and other physical signs also make you realise.
Apparently I just looked drawn and greyish. I was also a couple of stone heavier than I was when I went in. However I don't think I actually looked "ill"
So enough for now - the Tour is on the TV and I need to get ready to work out how in the household we can get to watch F1, the Men's Tennis (wife and 2 girls will watch that) and the Tour all at the same time! I have enough TVs and PCs with TV cards to do this - I need a plan that delivers the Wide Screen TV in the front room to me without it appearing that I planned it that way. If I offer to let the spend money at Bluewater - they'll smell a rat. Off now to work on my cunning and devious plan for World (no scrub that) total TV domination!!!
Saturday, July 07, 2007
To go and watch the Tour de France or not
We cannot make up our minds whether to go or not. Too much on all on one day - F1 at Silverstone, Men's Wimbledon and it seems a long travel and wait to see a couple of hundred bikes rush past and then spend a few hours getting home again.
So we decided that the best thing to do was to watch all three on TV - that way we all get to see what we want to see.
So we decided that the best thing to do was to watch all three on TV - that way we all get to see what we want to see.
7th July - and then it occurred to me
That whilst I was having my own battle to go across the threshold of the Doctor's door I hadn't realised that the 7th July was the anniversary of the London tube and bus bombings. I had been there the year before, just after they had gone off.
Until today I hadn't even linked the dates. Why should I - nothing else happened on the 7th July apart from me walking into the doctors and coming home in an absolute daze and then being so upset you cannot believe it.
Then the 21st July is the next date - when I was actually diagnosed. The 21st this year is the date of my birthday party - it is also the date of the second lot of London bombs which failed to go off.
The 25th July would be the next date to commemorate as that is the date of the operation which got rid of the tumour.
The dates are of course coincidental - I was just amazed that until today I hadn't linked the 7th with anything other than me!
Until today I hadn't even linked the dates. Why should I - nothing else happened on the 7th July apart from me walking into the doctors and coming home in an absolute daze and then being so upset you cannot believe it.
Then the 21st July is the next date - when I was actually diagnosed. The 21st this year is the date of my birthday party - it is also the date of the second lot of London bombs which failed to go off.
The 25th July would be the next date to commemorate as that is the date of the operation which got rid of the tumour.
The dates are of course coincidental - I was just amazed that until today I hadn't linked the 7th with anything other than me!
A sad week this coming week
There are three funerals next week. Two - those on Wednesday and Friday are people I knew who were diagnosed with cancer (lung and liver) and who didn't last very long at all. I cannot go to either of those. Both were unexpected and quite shocking in their own way. Both were past retirement age (but one only just so) - it doesn't make it right but it may help too position what follows:
On Thursday we will say goodbye to my friend's son who died at birth. His brother survived but is in intensive care - how do you even start to come to terms with that sort of tragedy? We were only speaking last week about the excitement of the birth and all. I spoke briefly to my friend last night about the mixture of sadness and joy it is very difficult to come to terms with two events so closely linked that could possibly leave you with such bitter sweet thoughts. I said that I was finding difficulty in finding something suitable to send as whilst one son had died we also needed to be fighting the other little fella's corner whilst he battles too. Not easy is it?
So we will go and say goodbye on Thursday, it will be absolutely heartbreaking for all of us but my friends what on earth are they going to be going through. My friend (a Cancer survivor) and his wife didn't deserve this after all they have been through themselves in the past 2 years. I have no idea what they will be thinking or how they will be able to go from the funeral straight to the Hospital and see the other son straight afterwards. I remember apologising to him for not understanding what he was going through (or had gone through by then) with his cancer. I don't want to know what it feels like for him now. I'm not sure if I'd be strong enough to cope with it.
On Thursday we will say goodbye to my friend's son who died at birth. His brother survived but is in intensive care - how do you even start to come to terms with that sort of tragedy? We were only speaking last week about the excitement of the birth and all. I spoke briefly to my friend last night about the mixture of sadness and joy it is very difficult to come to terms with two events so closely linked that could possibly leave you with such bitter sweet thoughts. I said that I was finding difficulty in finding something suitable to send as whilst one son had died we also needed to be fighting the other little fella's corner whilst he battles too. Not easy is it?
So we will go and say goodbye on Thursday, it will be absolutely heartbreaking for all of us but my friends what on earth are they going to be going through. My friend (a Cancer survivor) and his wife didn't deserve this after all they have been through themselves in the past 2 years. I have no idea what they will be thinking or how they will be able to go from the funeral straight to the Hospital and see the other son straight afterwards. I remember apologising to him for not understanding what he was going through (or had gone through by then) with his cancer. I don't want to know what it feels like for him now. I'm not sure if I'd be strong enough to cope with it.
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