Well - I am afraid it is all boring today. The good news is that I really thrashed through some work today and got on and completed stuff which I haven't done for ages. That cheered me up no end!
I went out to meet some Friends this evening and apart from having to go to the loo a few more times than normal I had a great evening. Only the very slightest problems with minor aches. Again, really chuffed about that.
All is OK - I wonder if I will be so upbeat next week?
Wednesday, November 08, 2006
All OK this morning
Apart from sleeping in, I'm still not sleeping that well at night. I feel OK today, a little sore but like so much of this it is uncomfortable and in the background rather than painful. I can feel something going on in the bladder area and that is it. No aches and pains to day at all. If anything there is a very slight dull ache in the bottom of my ribs.
So - nothing to report today really.
So - nothing to report today really.
Tuesday, November 07, 2006
A Little More Side Effects
Yes a little more has kicked in this evening. Slight aching around the ribs and a feeling of soreness around the middle. These aren't strong enough to need medication, it is more like a dull ache and I expect that this will change over time and with subsequent treatment.
I have a very slight headache and my arms and legs have slight aches at the joints.
I am taking this as a good sign that the therapy is kicking in already.
I have a very slight headache and my arms and legs have slight aches at the joints.
I am taking this as a good sign that the therapy is kicking in already.
Side Effects later today
Funny as the day goes on I've had the very slightest Flu type symptoms without the full thing. a few aches but dull and insignificant in my joints and a few chills too.
I am also feeling quite tired this afternoon but that could be work doing that.
I am also feeling quite tired this afternoon but that could be work doing that.
Morning Update
Well I am pleased to say that I feel fine this morning. I know that something is going on with my body but I couldn't quantify it or tell you how it feels at all. Very strange. Perhaps a warm feeling around my middle.
I got up once during the night which is not surprising considering the amount of water I drank yesterday. Other than that I feel fine this morning and I am awake and up and about earlier than I normally am too.
I got up once during the night which is not surprising considering the amount of water I drank yesterday. Other than that I feel fine this morning and I am awake and up and about earlier than I normally am too.
Monday, November 06, 2006
Recovery Operation 2
As I mentioned in Scar Wars 2 - the operation wasn't really meant to be that but when I left the Hospital I didn't feel as bad as I thought I should have done. The first few days were pretty similar with the blood and ooze and all that though.
But this time, I didn't feel half so knocked out and after a few days and the weekend I started to get back and involved in work occasionally and kept up the regime of drinking plenty of water and so on. The problem this time is more one of aches and pains, far more so than last time where a small movement would start you off bleeding again, this time that didn't always happen but I actually felt (and still do) my sides aching so that warned me not to overdo it.
I questioned my Consultant and the word is that different people react different ways and there wasn't a problem with this. The one major difference with the second operation was that they had been able to get a full look at the bladder and so had pulled me about a lot more than the first time.
This time I found driving very difficult and also my memory (both short and long term) and ability to string together coherent sentences was seriously curtailed. Other than that, the second recuperation went really well, I hardly sat down in front of the TV at all and spent more time trying to do work and picking up on things I should have done over the past couple of months.
There is not a lot more to say other than that you fall into a routine with these and you learn from the first one what to expect and adjust as you go on. Good luck to you in your recovery. Remember it is also part of the healing process, don't think you can "leap tall buildings" a few days after you are released from Hospital - it just won't happen.
But this time, I didn't feel half so knocked out and after a few days and the weekend I started to get back and involved in work occasionally and kept up the regime of drinking plenty of water and so on. The problem this time is more one of aches and pains, far more so than last time where a small movement would start you off bleeding again, this time that didn't always happen but I actually felt (and still do) my sides aching so that warned me not to overdo it.
I questioned my Consultant and the word is that different people react different ways and there wasn't a problem with this. The one major difference with the second operation was that they had been able to get a full look at the bladder and so had pulled me about a lot more than the first time.
This time I found driving very difficult and also my memory (both short and long term) and ability to string together coherent sentences was seriously curtailed. Other than that, the second recuperation went really well, I hardly sat down in front of the TV at all and spent more time trying to do work and picking up on things I should have done over the past couple of months.
There is not a lot more to say other than that you fall into a routine with these and you learn from the first one what to expect and adjust as you go on. Good luck to you in your recovery. Remember it is also part of the healing process, don't think you can "leap tall buildings" a few days after you are released from Hospital - it just won't happen.
Evening Update
Well, I have followed the instructions and after urinating done the bit with the bleach and all that (see instructions from the Hospital on this if you are having BCG).
The only side effects so far are a little bit of blood and a very slight stinging sensation. So all OK. I feel slightly hotter than normal but cannot say that I feel anything different on that front this evening.
So far so good then.
The only side effects so far are a little bit of blood and a very slight stinging sensation. So all OK. I feel slightly hotter than normal but cannot say that I feel anything different on that front this evening.
So far so good then.
Fear Itself
Not sure which President of the US said it but to paraphrase "The only thing we have to fear is fear itself" and I suppose that all of the accounts of going to get Immunotherapy all mention the dreaded catheter but not anything else about it.
So I was more concerned about that than anything else but I knew it could be no worse than the flexible cystoscopy I had had earlier in the process. That used a local anaesthetic.
I have to tell you that I don't think that they used a local today. But the Nurse was ever so nice and in moments the procedure was all over.
I arrived early and checked in and had just sat down - 10 minutes early mind you, and commenced reading my book. No more than a paragraph and I was called through. The Nurse quickly reminded me of the procedure, I went to the toilet and emptied my bladder (as you do) and laid on the bench. You just need to drop your trousers and underpants so no real undressing as such.
The procedure involves inserting a catheter and being brave I didn't look :-) I have got to the point now with all these things to tell the nurse that I am not going to look but will listen and obey their instructions. Also learn to breath properly as that helps settle me down anyway. The catheter really couldn't be felt apart from one bit (the advice here was to wiggle my toes and I suppose that helped a bit). I can't say it was painful, more unexpected and almost made me open my eyes in surprise. That slight bit of discomfort was over in a second or two and that really was all that there was to it. The BCG mixture was put in, I didn't feel that go in, the catheter came out and I hardly felt that either. The Nurse did say that she had done this a number of times and I think that in itself must account for how easy it was.
So I pulled my pants and trousers back on, had the briefest of chats and that was it. My poor wife had gone off to park the car which took longer than me having the treatment. As she emerged from the car park I had already been waiting for 5 minutes to see her.
We arrived home and I had to do 15 minutes on each side (you feel like a sausage in a recipe). So 15 minutes on front, left, right and back to allow the BCG to get every where. Then wait until the two hours are up and you can go to the toilet following all the precautions you will be given. These include using bleach, ensuring you don't get any sort of splashes on yourself etc.
If anything there is a very slight minor irritation but it is so minor as not to worry about. There looks to be a little blood in the urine as well - this is normal apparently.
So 1 down and 5 more to go of these. The Side Effects should start to kick in either next week or the week after and we will monitor those.
I had some fun explaining quite how this was administered to someone the other day. I think Billy Connolly would have fun explaining that to someone like this:
"So I went to have my treatment and the nurse showed me this thing called a Catheter. Where are you going to stick that?" "OH MY GOD, SHE'S GOING TO STICK IT UP MY WILLY!"
So now you know but, please I am the most squeamish person I know and it isn't that bad. I like to think of it as what are the alternatives and let's face it they just aren't even worth contemplating.
More when I know more.
So I was more concerned about that than anything else but I knew it could be no worse than the flexible cystoscopy I had had earlier in the process. That used a local anaesthetic.
I have to tell you that I don't think that they used a local today. But the Nurse was ever so nice and in moments the procedure was all over.
I arrived early and checked in and had just sat down - 10 minutes early mind you, and commenced reading my book. No more than a paragraph and I was called through. The Nurse quickly reminded me of the procedure, I went to the toilet and emptied my bladder (as you do) and laid on the bench. You just need to drop your trousers and underpants so no real undressing as such.
The procedure involves inserting a catheter and being brave I didn't look :-) I have got to the point now with all these things to tell the nurse that I am not going to look but will listen and obey their instructions. Also learn to breath properly as that helps settle me down anyway. The catheter really couldn't be felt apart from one bit (the advice here was to wiggle my toes and I suppose that helped a bit). I can't say it was painful, more unexpected and almost made me open my eyes in surprise. That slight bit of discomfort was over in a second or two and that really was all that there was to it. The BCG mixture was put in, I didn't feel that go in, the catheter came out and I hardly felt that either. The Nurse did say that she had done this a number of times and I think that in itself must account for how easy it was.
So I pulled my pants and trousers back on, had the briefest of chats and that was it. My poor wife had gone off to park the car which took longer than me having the treatment. As she emerged from the car park I had already been waiting for 5 minutes to see her.
We arrived home and I had to do 15 minutes on each side (you feel like a sausage in a recipe). So 15 minutes on front, left, right and back to allow the BCG to get every where. Then wait until the two hours are up and you can go to the toilet following all the precautions you will be given. These include using bleach, ensuring you don't get any sort of splashes on yourself etc.
If anything there is a very slight minor irritation but it is so minor as not to worry about. There looks to be a little blood in the urine as well - this is normal apparently.
So 1 down and 5 more to go of these. The Side Effects should start to kick in either next week or the week after and we will monitor those.
I had some fun explaining quite how this was administered to someone the other day. I think Billy Connolly would have fun explaining that to someone like this:
"So I went to have my treatment and the nurse showed me this thing called a Catheter. Where are you going to stick that?" "OH MY GOD, SHE'S GOING TO STICK IT UP MY WILLY!"
So now you know but, please I am the most squeamish person I know and it isn't that bad. I like to think of it as what are the alternatives and let's face it they just aren't even worth contemplating.
More when I know more.
A few hours to go now
Yes, 4 and a half to be approximately exact :-)
Surprisingly (for me) I slept really well and feel quite calm about the whole thing. In the past before the treatment and the tests I was a bag of nerves. The first test I needed a Valium!
Anyway, so far today so good. I'm sure I will get a little nervous at the Hospital though.
Surprisingly (for me) I slept really well and feel quite calm about the whole thing. In the past before the treatment and the tests I was a bag of nerves. The first test I needed a Valium!
Anyway, so far today so good. I'm sure I will get a little nervous at the Hospital though.
Sunday, November 05, 2006
Distraction - a Good Ploy
Well as it is Guy Fawkes night and time for fireworks, an evening out among friends has been just the tonic prior to tomorrow's treatment.
I left with the order that the Kleenex should be ready between 14:30 and 14:45 GMT!
Alcohol, food and fireworks - just what the Doctor ordered?
I left with the order that the Kleenex should be ready between 14:30 and 14:45 GMT!
Alcohol, food and fireworks - just what the Doctor ordered?
All About Me
I feel quite guilty that "it is all about me". I am rather pre-occupied with what I have got and after I have spoken to people realise that I have been prattling on about me and not asking about them and so on.
I apologise to my wife a lot about it. She is great about it.
I just find that it is something that is all about me and there isn't a lot you can do about that.
Don't be surprised to be so self centred.
I apologise to my wife a lot about it. She is great about it.
I just find that it is something that is all about me and there isn't a lot you can do about that.
Don't be surprised to be so self centred.
Recovery from Operation 1
I thought I ought to break this down into the two recoveries because, curious as it may be, both recoveries were very different albeit that both operations were quite similar.
Operation 1 (or Scar Wars 1) we ended with me coming home and having a bit of a cry at getting home. I can't tell you whether that was relief, pent up fear of what had happened to me or what might have been - who knows - one of those things. I think that it was because of how fast things had happened. I arrived home less than a week after I had been diagnosed and less then four weeks since I had the first symptoms.
The main thing was that I was quite sore and a bit bloody still where the catheter had come out. Whenever urinating it was stinging and a strange sensation. Additionally you leak and that was quite a shock still. things start getting better straight away though. Going home makes you feel a lot better of course. The leaking and the blood go away after a few days. You have quite a bit of blood in your urine and a few clots or perhaps bits of tumour (not sure about that though) and over the next few days, the blood gets less and so do the little bits too.
I suggest that you put some old sheets under yourself at night. This stops leaks getting onto the bed. I wore old clothes and also loose clothes. I found that I was able to wear track suit (Jogger) bottoms and loose shirts and tee-shirts also I could wear loose swimming trunks as there was little pressure around my middle and hence my bladder. You must not bend or pick up heavy weights and you can't exactly run about. No driving the car for a while etc. So it should not come as a surprise that if you stretch, twist or try to move too quickly you will regret it so DON'T DO IT! As soon as you do something like this you start the bleeding off again and you are back to square 1 in a way and have to take it easy again. A stretching yawn did it for me and I had to take it easy again for a day!
Drink lots of water and fruit juice and also eat plenty of fruit - you do not need to be straining going to the loo so prunes and grapes will help a lot. The early days are the worst as you feel everything when you go the loo, try to move around the house etc. Sitting is about all you can do and daytime TV is so dire, make sure you have some DVDs and videos to watch. Books are OK if you feel up to it and I was but I tended to do most of my reading at night in bed. My sleep pattern wasn't great and I must have lost lots of sleep in the 4 weeks leading up to the Operation. I would fall asleep in the chair but could I get to sleep at night! Damn, I could fall asleep about 4 in the morning and then go through to midday but going to bed at the normal time just didn't work so I was able to read until I felt tired.
It is unlike anything else recovering from an internal operation as you can't see anything wrong with you, there are no scars, no plaster cast no stitches and you can easily forget that you have a scar or series of scars on the inside of your bladder. That is like a balloon and so it moves about and doesn't (I imagine) help the healing process especially as most of the time the wound is probably covered in urine too.
To make matters worse (and this happened both times) I started to feel very itchy on my back and my legs and after a couple of days went to the Doctor. You may remember I spent a lot of time on some of the hottest days of the year lying on beds and sitting on chairs at the Hospital. I can only attribute it to the plastic covering of the bed/chairs or the linen but the Doctor told me that I had a particularly nasty case of a type of eczema and he prescribed some cream to treat this. Thank goodness that my wife was able to put this on for me - how do single people manage. The whole of my back and the back of my legs were covered, later it moved to my front and to my upper arms. It was quite uncomfortable as I had to lie on my front whilst the cream was applied - that made me jump every time it was put on and I was lying on my stomach area so putting a little pressure on my bladder. Anyway, it is one to watch out for and I knew the second time so was able to do something about it quicker.
Overall the recovery took quite a long time, I was pretty much sedentary and could hardly do anything for long. The effort to write an e-mail was ridiculous and concentration was very poor. Someone told me that it was the General Anaesthetic that did that and it would take a while to go. I can still hardly concentrate now but at least I can work for 40 minutes or so and then need to take a break. Before it could take me 40 minutes to write a few sentences.
I managed to read all of the Harry Potter Books in the three or four weeks after the operation. Probably the silliest thing I did was to have the X-Ray so near to coming out of Hospital and I think that made me feel worse and may have knocked me back a bit too.
I also think that I hadn't realised how serious the operation was - these days you are in and out in a few days but perhaps I was trying too hard to be up and get back to work etc. I hadn't realised just how I would feel. Take your time, it is after all a tumour they have removed from you and it needs to heal properly.
I think this will do for now there are other bits to say but I'll try and cover them in another blog.
Operation 1 (or Scar Wars 1) we ended with me coming home and having a bit of a cry at getting home. I can't tell you whether that was relief, pent up fear of what had happened to me or what might have been - who knows - one of those things. I think that it was because of how fast things had happened. I arrived home less than a week after I had been diagnosed and less then four weeks since I had the first symptoms.
The main thing was that I was quite sore and a bit bloody still where the catheter had come out. Whenever urinating it was stinging and a strange sensation. Additionally you leak and that was quite a shock still. things start getting better straight away though. Going home makes you feel a lot better of course. The leaking and the blood go away after a few days. You have quite a bit of blood in your urine and a few clots or perhaps bits of tumour (not sure about that though) and over the next few days, the blood gets less and so do the little bits too.
I suggest that you put some old sheets under yourself at night. This stops leaks getting onto the bed. I wore old clothes and also loose clothes. I found that I was able to wear track suit (Jogger) bottoms and loose shirts and tee-shirts also I could wear loose swimming trunks as there was little pressure around my middle and hence my bladder. You must not bend or pick up heavy weights and you can't exactly run about. No driving the car for a while etc. So it should not come as a surprise that if you stretch, twist or try to move too quickly you will regret it so DON'T DO IT! As soon as you do something like this you start the bleeding off again and you are back to square 1 in a way and have to take it easy again. A stretching yawn did it for me and I had to take it easy again for a day!
Drink lots of water and fruit juice and also eat plenty of fruit - you do not need to be straining going to the loo so prunes and grapes will help a lot. The early days are the worst as you feel everything when you go the loo, try to move around the house etc. Sitting is about all you can do and daytime TV is so dire, make sure you have some DVDs and videos to watch. Books are OK if you feel up to it and I was but I tended to do most of my reading at night in bed. My sleep pattern wasn't great and I must have lost lots of sleep in the 4 weeks leading up to the Operation. I would fall asleep in the chair but could I get to sleep at night! Damn, I could fall asleep about 4 in the morning and then go through to midday but going to bed at the normal time just didn't work so I was able to read until I felt tired.
It is unlike anything else recovering from an internal operation as you can't see anything wrong with you, there are no scars, no plaster cast no stitches and you can easily forget that you have a scar or series of scars on the inside of your bladder. That is like a balloon and so it moves about and doesn't (I imagine) help the healing process especially as most of the time the wound is probably covered in urine too.
To make matters worse (and this happened both times) I started to feel very itchy on my back and my legs and after a couple of days went to the Doctor. You may remember I spent a lot of time on some of the hottest days of the year lying on beds and sitting on chairs at the Hospital. I can only attribute it to the plastic covering of the bed/chairs or the linen but the Doctor told me that I had a particularly nasty case of a type of eczema and he prescribed some cream to treat this. Thank goodness that my wife was able to put this on for me - how do single people manage. The whole of my back and the back of my legs were covered, later it moved to my front and to my upper arms. It was quite uncomfortable as I had to lie on my front whilst the cream was applied - that made me jump every time it was put on and I was lying on my stomach area so putting a little pressure on my bladder. Anyway, it is one to watch out for and I knew the second time so was able to do something about it quicker.
Overall the recovery took quite a long time, I was pretty much sedentary and could hardly do anything for long. The effort to write an e-mail was ridiculous and concentration was very poor. Someone told me that it was the General Anaesthetic that did that and it would take a while to go. I can still hardly concentrate now but at least I can work for 40 minutes or so and then need to take a break. Before it could take me 40 minutes to write a few sentences.
I managed to read all of the Harry Potter Books in the three or four weeks after the operation. Probably the silliest thing I did was to have the X-Ray so near to coming out of Hospital and I think that made me feel worse and may have knocked me back a bit too.
I also think that I hadn't realised how serious the operation was - these days you are in and out in a few days but perhaps I was trying too hard to be up and get back to work etc. I hadn't realised just how I would feel. Take your time, it is after all a tumour they have removed from you and it needs to heal properly.
I think this will do for now there are other bits to say but I'll try and cover them in another blog.
Mood Shifts
Wow! Every now and then I get the strangest mood shifts. You can probably tell that I am pretty much "up" most of the time but where on earth do these heavy depressions come from? I think it is probably normal as your brain just goes off and analyses all you know and then throws out a "what if" for you. They don't last very long but can be quite sudden, they come from nowhere and without warning, they don't last very long thank goodness.
I was looking at some pictures of my children when they were quite young and - blow me - if I didn't come over all choked up. This lasted for all of about 10 seconds I suppose and for no reason at all. I can be sitting doing something and for no reason I'll get a flash of something sad just appear, almost a small sentence from my brain. Here is one that appeared a few weeks back. "you won't be there at your children's weddings" - "You may never become a grandparent". Pretty harsh stuff really, the last one doesn't worry me too much (far to young for that!). It is where do the thoughts come from? I'm now nowhere near life threatened diagnosis - all is controllable and yet somewhere the brain is making this stuff up and sticking more hurdles in my way.
Anyway, I'm not that worried about them but you really could do without these sorts of things whizzing around your head!
I was looking at some pictures of my children when they were quite young and - blow me - if I didn't come over all choked up. This lasted for all of about 10 seconds I suppose and for no reason at all. I can be sitting doing something and for no reason I'll get a flash of something sad just appear, almost a small sentence from my brain. Here is one that appeared a few weeks back. "you won't be there at your children's weddings" - "You may never become a grandparent". Pretty harsh stuff really, the last one doesn't worry me too much (far to young for that!). It is where do the thoughts come from? I'm now nowhere near life threatened diagnosis - all is controllable and yet somewhere the brain is making this stuff up and sticking more hurdles in my way.
Anyway, I'm not that worried about them but you really could do without these sorts of things whizzing around your head!
Saturday, November 04, 2006
A Few Days off before the treatment
I have just come back from my parents after spending a couple of days there prior to the treatment. I decided I ought to go and see them to prove I was still alive and also in case I am not fit enough around Christmas time. The treatment ends a week or so before Christmas and as I believe the side effects get progressively worse, I felt it was worth making sure I got to see them as they would find it difficult to get to me.
A nice few days but as I left, Mum was in tears. I think that this disease and its inherent uncertainty make for this sort of reaction and for those close to you to feel as bad as well. It really isn't fair.
I am gladdened though to read the leaflet the Hospital sent me through about the treatment and what it is all about. I like this bit:
"Treatment with OncoTICE is a form of immunoterapy, which helps your body to produce a natural defence against infections or tumours. immunotherapy has been shown to be a more effective treatment for superficial bladder cancer than chemotherapy in most patients. After TUR (transrethural resection), it can eliminate the remaining tumour cells and prevents other cells of the inner lining of the bladder wall from becoming malignant.
Someone mentioned that "all this treatment must be a pain in the arse". Near, very near :-)
A nice few days but as I left, Mum was in tears. I think that this disease and its inherent uncertainty make for this sort of reaction and for those close to you to feel as bad as well. It really isn't fair.
I am gladdened though to read the leaflet the Hospital sent me through about the treatment and what it is all about. I like this bit:
"Treatment with OncoTICE is a form of immunoterapy, which helps your body to produce a natural defence against infections or tumours. immunotherapy has been shown to be a more effective treatment for superficial bladder cancer than chemotherapy in most patients. After TUR (transrethural resection), it can eliminate the remaining tumour cells and prevents other cells of the inner lining of the bladder wall from becoming malignant.
Someone mentioned that "all this treatment must be a pain in the arse". Near, very near :-)
Thursday, November 02, 2006
Off to my Parents
Yes, before the treatment kicks in and on the "best guess" that I am not going to be mobile until after Christmas and so probably would not see them I am off to day to go and see them for a few days. Bless them, they think I am at death's door so I have to get to see them quite regularly and show them that I am alright :-)
I am thinking of getting the Monty Python Tee Shirt that says "I'm not dead yet!" on it so I can wear it when I meet people - or is that cruel :-)
Anyway, it will give me a few days with my folks and allow my Mum to spoil me rotten for a few days too. Also I'll see my kid brother who also lives near them. I was always the one that didn't need to be near them so they all moved out of the area a couple of hundred miles up the motorway!
Blog will be quiet for a few days
I am thinking of getting the Monty Python Tee Shirt that says "I'm not dead yet!" on it so I can wear it when I meet people - or is that cruel :-)
Anyway, it will give me a few days with my folks and allow my Mum to spoil me rotten for a few days too. Also I'll see my kid brother who also lives near them. I was always the one that didn't need to be near them so they all moved out of the area a couple of hundred miles up the motorway!
Blog will be quiet for a few days
Just to get that straight
I am dealing with Cancer openly - it is a matter of fact to me. I am not being brave or big headed I am just being honest about what is happening to me, the treatment, the causes, the side effects and so on.
I believe that it is also an education. I knew that my Grandparents and some friends of mine died of Cancer. Before i was diagnosed that was ALL I knew. I spoke to some Friends and found that a few were Long term Cancer survivors, 25 and 15 years so far - one with Bladder Cancer. A friend's wife also had it many years ago and is now clear.
However, you must talk about these things, Cancer is a bad word but these days they can sort you out so it is important to talk about these things. I do as it is educational - it isn't big and it isn't clever it just needs to be out in the public domain exactly what it is like, what you can do about it and to educate everyone you know about what you have. It helps both parties I hope - It helps me as I can explain the whole thing and how I feel too.
Don't hide it, get it out in the open!
I believe that it is also an education. I knew that my Grandparents and some friends of mine died of Cancer. Before i was diagnosed that was ALL I knew. I spoke to some Friends and found that a few were Long term Cancer survivors, 25 and 15 years so far - one with Bladder Cancer. A friend's wife also had it many years ago and is now clear.
However, you must talk about these things, Cancer is a bad word but these days they can sort you out so it is important to talk about these things. I do as it is educational - it isn't big and it isn't clever it just needs to be out in the public domain exactly what it is like, what you can do about it and to educate everyone you know about what you have. It helps both parties I hope - It helps me as I can explain the whole thing and how I feel too.
Don't hide it, get it out in the open!
Wednesday, November 01, 2006
Friends - not the ones on TV
I have some wonderful friends. They really care about me and they don't know what to do about my illness. I don't know what to tell them either.
I love my friends, they are great company and funny and good buddies and all those things. One friend treats me no differently than before - or perhaps he does he is very direct and very much matter of fact about the whole thing? Now I reckon that it is now "our" way of dealing with this. Does that make sense? Each one of my Friends will deal with this in their own way and - curiously enough, I will adapt my response to their lead as it makes them happy with their approach to the problem. Mmm - going too deep again here. Maybe we can look at that later. Back to the thread then:
Each friend has a different approach to me. They aren't frightened of me, I don't think they are frightened of the disease itself particularly apart from the havoc it can wreak. I feel for them because they are straining to know what to do. I mean we have known each other for years and there they are confronted with me. I don't look ill, they know that I am seriously ill and frankly, I don't know that I am seriously ill. I don't act that way and apart from the occasional twinge or ouch - you really wouldn't know. I reckon if you just met me in a bar you wouldn't know I was ill at all.
The illness to me is secondary to a lot of the things that are going on. The sheer strain of the Critical Illness claim which really brought it home (I didn't even realise I could claim) and the way that people react to me is incredible. I mean apparently I am being "brave" but actually I am getting on with it and dealing pragmatically with the hand I am getting dealt here.
For me to cope I have to convince myself that I got the better to the Cancers you can contract - I mean how outrageous is that as a statement.
Given a choice of Cancers to contract - which one would you choose? OK Bladder Cancer has certain issues associated with it but it isn't colon cancer or pancreatic cancer. You know that this one has some issues (accurate diagnosis being one of them) but you know, caught at this early age and despite what I have been through (and I know there is a lot more to come) the long term is actually pretty good.
OK - I have written enough for today. Remember, I live in the UK, we have the NHS who, whatever you say about them, have never let me down. This Cancer is treatable, controllable and now I am in the system, it can be monitored and effectively controlled. What more can I want. Two generations ago you could die from far less serious things. It is all a matter of perspective. I firmly now believe that I am extremely lucky to have a health service looking after me, to live in a country where my treatment is part of my "citizen's package". Some of the most wonderful Friends you can imagine that care really deeply but because they are British are very bad at showing it. Look elsewhere - some people die thorough things that we take for granted so despite all this whining about having Cancer - how can I moan about my lot? I can't, that is how I rationalise it and that is how I intend to get on with it.
I think it is very personal getting Cancer but it is also something that should change you life in other ways. You should live by a totally different set of codes to those you did before you got it.
I love my friends, they are great company and funny and good buddies and all those things. One friend treats me no differently than before - or perhaps he does he is very direct and very much matter of fact about the whole thing? Now I reckon that it is now "our" way of dealing with this. Does that make sense? Each one of my Friends will deal with this in their own way and - curiously enough, I will adapt my response to their lead as it makes them happy with their approach to the problem. Mmm - going too deep again here. Maybe we can look at that later. Back to the thread then:
Each friend has a different approach to me. They aren't frightened of me, I don't think they are frightened of the disease itself particularly apart from the havoc it can wreak. I feel for them because they are straining to know what to do. I mean we have known each other for years and there they are confronted with me. I don't look ill, they know that I am seriously ill and frankly, I don't know that I am seriously ill. I don't act that way and apart from the occasional twinge or ouch - you really wouldn't know. I reckon if you just met me in a bar you wouldn't know I was ill at all.
The illness to me is secondary to a lot of the things that are going on. The sheer strain of the Critical Illness claim which really brought it home (I didn't even realise I could claim) and the way that people react to me is incredible. I mean apparently I am being "brave" but actually I am getting on with it and dealing pragmatically with the hand I am getting dealt here.
For me to cope I have to convince myself that I got the better to the Cancers you can contract - I mean how outrageous is that as a statement.
Given a choice of Cancers to contract - which one would you choose? OK Bladder Cancer has certain issues associated with it but it isn't colon cancer or pancreatic cancer. You know that this one has some issues (accurate diagnosis being one of them) but you know, caught at this early age and despite what I have been through (and I know there is a lot more to come) the long term is actually pretty good.
OK - I have written enough for today. Remember, I live in the UK, we have the NHS who, whatever you say about them, have never let me down. This Cancer is treatable, controllable and now I am in the system, it can be monitored and effectively controlled. What more can I want. Two generations ago you could die from far less serious things. It is all a matter of perspective. I firmly now believe that I am extremely lucky to have a health service looking after me, to live in a country where my treatment is part of my "citizen's package". Some of the most wonderful Friends you can imagine that care really deeply but because they are British are very bad at showing it. Look elsewhere - some people die thorough things that we take for granted so despite all this whining about having Cancer - how can I moan about my lot? I can't, that is how I rationalise it and that is how I intend to get on with it.
I think it is very personal getting Cancer but it is also something that should change you life in other ways. You should live by a totally different set of codes to those you did before you got it.
Actually you ARE ill you idiot
Gulp. I don’t think I have been trying to ignore the fact that I am ill or feel that I have been in denial about it. What I probably haven’t grasped is the gravity of the disease.
Generally, I don’t feel ill. I don’t look ill. I don’t act ill (I act a little more strangely perhaps). I take things easy and I don’t act quite like I used to I suppose and of course I can’t work as well as I used to.
However, it has never really occurred to me that this was “Serious” in that way. I was told I had Cancer, I had an operation days later and a few months after that another operation. Uncomfortable, knew something had been done etc.
I think I expected it to be like other things you get – you get cured you think no more of it and you go back to work. Wrong, not with this little beauty you don’t! It can recur and with quite alarming regularity. You can carry on having tumours taken out for quite a while and you can carry on having treatment and being seen and observed for the rest of your natural by the looks of things.
So – still do I feel ill? No.
Then the consultant explained which way “up” was to me. Untreated this is a significant threat to you – and they meant life – you can tell. “As it is, we are taking no chances with you” – yikes (as Scooby would say)! Still it hasn’t sunk in. I think I should be a lot more worried about this than I am. I wonder if that is what people’s expectations of me are. Perhaps you are meant to walk around all “doom and gloom”?
But, it was realising that things like Critical Illness cover kicks in and that possibly, I won’t be the best insurance risk in the future that has started me thinking, albeit only in the past week or so, that this really is a disease I need to take seriously or to feel more worried about or perhaps.
When do you take it seriously? Is Cancer – the word – something that you worry about? I don’t profess to know the answers just yet but it is an interesting and eventful journey. This blog alone has opened up so many ideas and opportunities from something that many people (who have experience of Cancer but only as a bystander) consider to be a terminal disease. Yet I have found out that it doesn’t need to be. I’m young (by my own standards) I can actually defeat this if I work at it. If I can’t defeat it, modern medicine can control this and strangely I will probably die from some other cause totally different to this one!
Generally, I don’t feel ill. I don’t look ill. I don’t act ill (I act a little more strangely perhaps). I take things easy and I don’t act quite like I used to I suppose and of course I can’t work as well as I used to.
However, it has never really occurred to me that this was “Serious” in that way. I was told I had Cancer, I had an operation days later and a few months after that another operation. Uncomfortable, knew something had been done etc.
I think I expected it to be like other things you get – you get cured you think no more of it and you go back to work. Wrong, not with this little beauty you don’t! It can recur and with quite alarming regularity. You can carry on having tumours taken out for quite a while and you can carry on having treatment and being seen and observed for the rest of your natural by the looks of things.
So – still do I feel ill? No.
Then the consultant explained which way “up” was to me. Untreated this is a significant threat to you – and they meant life – you can tell. “As it is, we are taking no chances with you” – yikes (as Scooby would say)! Still it hasn’t sunk in. I think I should be a lot more worried about this than I am. I wonder if that is what people’s expectations of me are. Perhaps you are meant to walk around all “doom and gloom”?
But, it was realising that things like Critical Illness cover kicks in and that possibly, I won’t be the best insurance risk in the future that has started me thinking, albeit only in the past week or so, that this really is a disease I need to take seriously or to feel more worried about or perhaps.
When do you take it seriously? Is Cancer – the word – something that you worry about? I don’t profess to know the answers just yet but it is an interesting and eventful journey. This blog alone has opened up so many ideas and opportunities from something that many people (who have experience of Cancer but only as a bystander) consider to be a terminal disease. Yet I have found out that it doesn’t need to be. I’m young (by my own standards) I can actually defeat this if I work at it. If I can’t defeat it, modern medicine can control this and strangely I will probably die from some other cause totally different to this one!
Concentration Lapses
One of the most annoying things I have found after the Operations is the lack of attention span I have now and also the loss of words in mid sentence.
Trying to do figure work (calculations) takes me absolutely ages. Procrastination is also a big problem. I suppose I know how I’ll struggle to do something and put it off.
Writing, like this is relatively easy but business writing takes an age to get right. I find my mind wanders off after 10 or 15 minutes. I have to get up, walk around and then come back to what I was doing.
Apparently I am not alone in this. Some wag told me that it is very distressing but in the end you forget about it!
So expect some silly memory loss, loss of words and also lack of concentration. It is getting better but slowly, slowly
Trying to do figure work (calculations) takes me absolutely ages. Procrastination is also a big problem. I suppose I know how I’ll struggle to do something and put it off.
Writing, like this is relatively easy but business writing takes an age to get right. I find my mind wanders off after 10 or 15 minutes. I have to get up, walk around and then come back to what I was doing.
Apparently I am not alone in this. Some wag told me that it is very distressing but in the end you forget about it!
So expect some silly memory loss, loss of words and also lack of concentration. It is getting better but slowly, slowly
The First Operation – or Before I had the opportunity to write Scar Wars Episode I
I had forgotten to let anyone know - probably because I was quite knocked out by this first Operation.
So, slightly out of sequence with the rest of the blog here is a view of the first operation I had. This is a bit long but I suppose the whole thing is therapeutic for me to tell it as it was. Whilst a bit on the indulgent side, I hope that if you ever have to go through this you may take some small comfort in the following things:
So, slightly out of sequence with the rest of the blog here is a view of the first operation I had. This is a bit long but I suppose the whole thing is therapeutic for me to tell it as it was. Whilst a bit on the indulgent side, I hope that if you ever have to go through this you may take some small comfort in the following things:
- Everyone is really scared of Operations - it isn't just you
- You are allowed to be really frightened and to cry and to be cross with people who don't understand you
- It is your body - only YOU know what you are feeling and what they are doing to you. Only you can tell the Doctors if you are in pain or if you don't understand something. You are not "in control" but you can ask questions and I believe you should demand answers (within reason)
- Lose sleep - I did - but make it up when you get home
- The Doctors tell you to do lots of things you don't understand but do follow their advice - the bit about drinking lots of fluids - do it - it really does help
- This is not a "Punishment from God" or anything like it. The Doctors and Nurses actually want you to get well and you should do everything in your power to make yourself well, to recover quickly and get better
- Don't overdo it. You cannot have major work like this done and think you are going to run a Marathon in 6 months IT WILL NOT HAPPEN.
Having given you the bullet points of the day. Here is the remaining missive. Not as long as War and Peace, not as interesting as Lord of the Rings but a little story of an ordinary bloke caught up in something that 4 weeks previously had not even been thought of. I had a new job - the job I had dreamt about for most of my working life. I had just got my feet under the table and this happened.......
Now read on.
Four (two working) days after the Flexible Cystoscopy I arrived on one of the hottest days of the year at the Admissions Lounge of the Hospital. I had not had any pre assessment and no X-Ray because of the preparation time that would have taken.
I had nothing to eat or drink after 5:30 a.m. and as I’d been awake all night it meant that I could easily ensure that I had my last food and drink for that day. Grapefruit segments and a coffee were my meagre breakfast in the early light of the 25th July 2006.
To say I was nervous was an understatement. There were lots of people in there, the on duty nurse could have done with a brain transplant as she was as much use as a a chocolate teapot. she didn't know who was up next and didn't know a lot at all really. People were nattering nervously (I tend to go very very quiet in my nervousness) those around me were chattering incessantly about nothing at all and the TV was busy playing daytime re runs of some cash in the attic crap or some such stuff - very annoying. My wife (bless her) came with me and I put on my CD player and listened to lots of classical music to try and calm down. One by one everyone left and I was still there 4 hours later. They let me have a mouth wash which was great and at 4 ½ hours after first arriving I was finally admitted.
The flurry of activity when I got on the ward was amazing. They had to take a blood sample (probably the one thing I hate most in all the world is needles). Having got that out of the way then it was on to weighing, measuring height and all that, getting into the Operating Gown and answering about 20 pages of questions. Then the Anaesthetist came we went over the questions and then an assistant Doctor who ran me through the procedure and what to expect.
Things had changed in the 30 years since I had last been in a Hospital and probably for the better. To calm down I kept trying to listen to music but would be interrupted quite a bit. They measured me up for DVT Stockings – I put those on and I was down to Theatre I suppose 1 ½ hours after getting onto the ward. As I said it was a very hot day, probably the hottest of the Summer and it was a relief to get into the air conditioned Theatre complex – the Wards being naturally ventilated (yea right!).
Theatre is probably the most frightening bit of the whole event. You are there on a trolley, you’d love to run away but you are surrounded by porters and Doctors. You get wheeled around watching the lights on the ceiling like some sort of ER movie. Then you go into the Prep room and you think stupid thoughts – the one I think is “Will I ever wake up or is this it” – I find that it isn’t a particularly reassuring thought but sort of reflects my thinking at that particular moment. I think you get to settling stuff with yourself and then, just as you do, you realise that actually, you don't have enough time to resolve all the things you'd like to correct in your life, to right the wrongs, to change the world and all that. Perhaps we are not meant to. Mmm - this appears to be going off at some deep and meaningful tangent so I'll stop that thought direction for now and get on with the story.
I met with the anaesthetist and the Theatre helper and then my Surgeon. They then put on some heart monitoring sticky pads and blood pressure sleeve (which ended up leaving a trail of scratches down my arm). Then it was time for inserting the cannula or canula into your wrist. Now this is the bit where you are allowed to swear but this one was better than the second or x-ray ones. It stings I suppose. I’m sure they inserted a blunt one on the second Op. So swear away and really put some venom into it - they expect it and they know far more swear words than you do so let rip!
Then there are some drugs that go in and then a cold sensation and that is it “good night Vienna”. They say you have really pleasant dreams. I don't remember anything at all certainly nothing nice. Perhaps you have to be receptive to that sort of thing?
You wake in Recovery and I was absolutely desperate on waking to go to the toilet. The Nurse told me I had a catheter in. I wasn’t convinced I HAD to go; so a shot of some sort of pain killer and the sensation passed – thank goodness it felt like I was going to burst.
At this point always ask for something to drink. You get the best tasting water in the world. Your throat may hurt as you have had a device in there during your operation. Also you haven’t had a drink for hours. Sip it slowly though - it is nectar.
After a while and I couldn’t tell you how long, you get transferred back to the ward. You then notice you have all sorts of bags hanging from your bed on poles. I had a saline drip to keep me hydrated I believe and two thumping great big saline bags which were washing out my bladder. I couldn’t see what arrangement was there but the catheter had feeds from these two bags and another collection bag attached to the bedside.
Now all was well, I felt wide awake, was chatting to my wife who had been working locally. That was fine – they had saved a sandwich for me and they made me a coffee. I was just starting to eat my sandwich and had a few bites out when they started messing around with my catheter as it wasn’t draining so they do a little trick with a sort of backwash to clear it. I said that I felt dizzy and then I said I feel feint.
When I came too – yes I passed out! I had managed to knock the coffee over the nurse who was messing about with the catheter (serves her right – fancy just diving in there and doing that whilst I was trying to eat – you get no privacy or dignity sometimes). I was jiggling around on the bed and it felt like I had cramped my legs but apparently that was because I had gone quite stiff on coming out of the feint.
The nurse reckoned that this feint was something to do with eating on an empty stomach or some such stuff. Anyway, it gave everyone in the room a shake up and wake up call. After that, I didn’t have too much to worry about but they did transfer me to another ward which was a specialist Urology one.
I’m going to say that I didn’t get any sleep that night but I think I probably did. However the 5 am blood pressure and temperature taking was a bit of a shock. Later that morning they took away the saline drip. During the night I had probably gone through 4 more large saline bags that were washing out my bladder. So they stopped all of those and removed the bags. I was transferred to a leg bag from a bedside one and moved out of bed to a nearby chair. The evening before my wife had brought in an electric fan as it was so hot and I set myself up with a fan, my music and a book.
I had a wash and changed into some hospital pyjamas. I felt a lot more comfortable. At this time, unbeknown to me, the heat, the chair and possibly the linen were about to give me a heat rash (or what I thought to be a heat rash).
The day passed very slowly and they checked the amount you drank against the amount you passed out with repetitive regularity and I didn’t feel much like doing anything. TV was an option but having to shell out money to watch TV when I would be going home the next day didn’t appeal. I managed to read half of the first Harry Potter book. In fact by the time I went back to work I had read all of the Harry Potter books and started on some history books too.
The Consultant’s do their round very early in the morning. They told me all had gone well, what they had seen and what they took away and I was to see them in a number of weeks after the X-Ray as they would have done the Pathology tests as well by then. If I behaved myself the catheter would come out in the morning and I could, if all things were functioning normally, go home. I was to rest, not bend, not lift and a whole list of things of do’s and don’ts were provided to me.
Again, I felt that that night I didn’t have much if any sleep. I had no idea what having a catheter out was going to be like (patience – I’m coming to that bit). So morning arrived and joy of joys, an injection – they gave a small shot of antibiotic to ensure there was no infection. The catheter is a complicated looking thing and I tried not too look but was sort of not in a position to do much to start with. They take a sample of urine to be checked. They then let the water out of the catheter – this has been pumped in to hold the thing in place. After that the damn thing is drawn slowly out and you have to cough a few times as it passes the sphincters but after that there is a slight pulling sensation like a vacuum I suppose and what can only be called a tear inducing feeling but not painful, just a weird sensation I suppose. The relief of having the damn thing out and being “free” of it are greater feelings than having the thing come out of your body so you feel a lot better immediately. At this point, I was also allowed to get rid of the DVT Stockings and to go for a shower.
Best shower in the world? Possibly. I remember standing in the shower for ages just letting the water run over me. It had been a really hot and sticky night. In fact I now remember having a thunderstorm that lit up the ward from about 3 in the morning – most impressive. Things are a little sore I remember and real care needed to be taken to wash all the crud and bits off. However you do feel so much better.
After I had had my shower I had to urinate into a jug so that the nurses can keep an eye on what has been drunk and what has been passed – this is to ensure that you are not retaining water. Anyway, thank goodness for Hospital pyjamas as there was some blood oozing out and I am afraid that you leak a little bit too.
A tip is to ensure you hold on a while before going as that way you don’t strain yourself trying to urinate. Second time I held back a while and found that helped and I got to go home earlier. This first time, I took ages to sort this out and they had to keep checking me with an ultrasound machine. After I calmed down a bit they finally released me in the mid afternoon. My wife came and got me. It was strange to walk all the way to the car park from the ward. John Wayne would have been proud of my walk! It took a while but we got there. I used the lifts instead of the stairs. We don’t live far from the Hospital and I was home in 5 or 10 minutes.
I remember looking at my wife and saying that I was feeling very tired and very weepy. I went in to the living room and bawled my eyes out for a few minutes and let out all the anxiety, shock, worry and everything else out. That was probably the release that was needed as I felt a lot better for that. I’ll write up the story of the recovery process in another blog entry.
Subscribe to:
Posts (Atom)