Just had a letter which states that my PSA is 1.1 which is good and low and that my CT Scan was all clear which is great news indeed. Now it only remains for the Cystoscopy in a few months time (it may be April as I have a strange letter from the Hospital that doesn't exactly state what it is for). If that is clear the plan is to discharge me which will be amazing and heading into Christmas its about as good as it can get.
I was saddened to hear that my friend died yesterday - he was 90 and he was very supportive of me - we used to go out once a month to see some Trad Jazz and I think that it was just useful for me to get out for a time and just chat and watch and listen to the music.
Friday, December 20, 2019
Tuesday, November 12, 2019
CT Scan Update
That was eventful! I left in plenty of time and arrived at the hospital to find the road blocked with people trying to get into the hospital and get parked. With over 30 minutes in a jam and trying to find a space I left the car park and drove to my friend's house about a mile away, parked and rushed to the Hospital being 10 minutes late for my appointment and pretty stressed about about that.
Luckily, you might say, they were pretty chilled about it and after I apologised they said it was fine as just about everyone had the same problem. What I hadn't realised is that my much lower blood pressure these days and all that rushing around had lowered my BP quite a bit. So when the Cannula went in I said I felt a little woozy. I said that they might find that checking the line might be a problem (I've passed out before when they've pumped saline in to check the flow). Not long after that I said to the nurse that I was going to pass out and I just remember having a sort of strange dream then waking up with people all around me. I felt a lot better and though I was in a bit of a cold sweat at least we were able to get my BP back up to around 110 over 70! My heart rate then came back down and then I realised they'd taken the Cannula out.
They asked me if I'd like to remake the appointment and I said no, it was that stressful trying to find a space to park that I didn't want to go through that again (although I have to for my partner this Thursday)! SO I was taken into the Scanning room and we had another go with me lying down and it was successful this time. There are a sereies of scans with and without the dye they inject into you which gives you a hot flush and makes you feel like you are wetting yourself :-) They then wait a further 10 minutes adnd re-do the same set of tests.
After 10 minutes or so they removed the cannula and made sure I was feeling OK. I decided to take up my friends offer and have a coffee and something to eat at his place before driving home. That was quite nice as it just made sure I felt well and was settled.
It was a shame that it was stressful, it isn't really such a stressful procedure normally, I don't remember it being like that last time but with all the rushing about I am certain that was the problem.
I now need to keep an eye on my BP especially with this Vasovagal problem and I need to make sure I'm lying down for cannula insertions and possibly for blood tests in the future! Either that or drop my medicine and perhaps allow a spare half a day to park my car! It's pretty ridiculous that they have such a huge hospital with such crap parking!
Luckily, you might say, they were pretty chilled about it and after I apologised they said it was fine as just about everyone had the same problem. What I hadn't realised is that my much lower blood pressure these days and all that rushing around had lowered my BP quite a bit. So when the Cannula went in I said I felt a little woozy. I said that they might find that checking the line might be a problem (I've passed out before when they've pumped saline in to check the flow). Not long after that I said to the nurse that I was going to pass out and I just remember having a sort of strange dream then waking up with people all around me. I felt a lot better and though I was in a bit of a cold sweat at least we were able to get my BP back up to around 110 over 70! My heart rate then came back down and then I realised they'd taken the Cannula out.
They asked me if I'd like to remake the appointment and I said no, it was that stressful trying to find a space to park that I didn't want to go through that again (although I have to for my partner this Thursday)! SO I was taken into the Scanning room and we had another go with me lying down and it was successful this time. There are a sereies of scans with and without the dye they inject into you which gives you a hot flush and makes you feel like you are wetting yourself :-) They then wait a further 10 minutes adnd re-do the same set of tests.
After 10 minutes or so they removed the cannula and made sure I was feeling OK. I decided to take up my friends offer and have a coffee and something to eat at his place before driving home. That was quite nice as it just made sure I felt well and was settled.
It was a shame that it was stressful, it isn't really such a stressful procedure normally, I don't remember it being like that last time but with all the rushing about I am certain that was the problem.
I now need to keep an eye on my BP especially with this Vasovagal problem and I need to make sure I'm lying down for cannula insertions and possibly for blood tests in the future! Either that or drop my medicine and perhaps allow a spare half a day to park my car! It's pretty ridiculous that they have such a huge hospital with such crap parking!
Monday, November 11, 2019
Off For My CT Scan
I feel fine about my scan - apart from getting parked that is! It's always a bind at Maidstone Hospital but my other half is with me and so if the worst comes to the worst she can drive off somewhere and come and pick me up later!
It really shook me when I got the appointment and it took me a day or so to get over it. I suppose that, the Root Canal work, other appointments and just remembering how poorly I was back in those days where at the root of it.
So at the moment, I'm OK, I've had some food - I cannot eat for 2 hours before the scan and I've got 1 Litre of water ready to drink before I go in - this to be consumed in the hour before the appointment - a bit difficult if you are driving yourself there but I am sure I'll manage it.
I also got a copy of the Consultant's letter which confirmed that this, the blood tests and the camera / cystoscopy in 6 months if all prove clear will discharge me from Care/Hospital. That is something to look forward to and so I should be positive about all of that.
Fingers crossed that the Scan will show all is OK and that I can go to stage 3 and have the scope and they can finally see the back of me. Time for a celebration if that is the case.
At least I am a lot calmer than I was a few weeks ago - such a strange reaction to the news about the Scan - it's got a bit of a nuisance with the Cannula and Dye going in but hey, I'm sure it will be fine.
It really shook me when I got the appointment and it took me a day or so to get over it. I suppose that, the Root Canal work, other appointments and just remembering how poorly I was back in those days where at the root of it.
So at the moment, I'm OK, I've had some food - I cannot eat for 2 hours before the scan and I've got 1 Litre of water ready to drink before I go in - this to be consumed in the hour before the appointment - a bit difficult if you are driving yourself there but I am sure I'll manage it.
I also got a copy of the Consultant's letter which confirmed that this, the blood tests and the camera / cystoscopy in 6 months if all prove clear will discharge me from Care/Hospital. That is something to look forward to and so I should be positive about all of that.
Fingers crossed that the Scan will show all is OK and that I can go to stage 3 and have the scope and they can finally see the back of me. Time for a celebration if that is the case.
At least I am a lot calmer than I was a few weeks ago - such a strange reaction to the news about the Scan - it's got a bit of a nuisance with the Cannula and Dye going in but hey, I'm sure it will be fine.
Sunday, October 27, 2019
Stay On Your Guard - Unexpected Reaction
I was fine until yesterday morning when an Appointment Letter arrived from the Hospital for my CT Scan which I know I was going to have but it had a very unexpected result.
I actually almost cried and went into a series of hellish flashbacks right back to the early days of having the diagnosis and so on. It put me into a tail spin and I felt terrible all day and I don't feel a lot better today although I've got rid of the tearful and shaking me that I was yesterday. I forget how bad things were and in some ways I was in a different head space altogether then (some 13 years ago). I was tackling things head on, had the family around and so on. Now, given the time and some sort of trigger like this, I can flash back and truly remember how frightened I actually was inside the hard shell of it all. Perhaps I'm more frightened now than I was then? What I mean is that I know have the time to reflect on it more, can oversee the whole thing rather than the moment I was in and so it affects me more somehow.
I should be happy about all of this really. For if this is clear and the next camera scope is clear, my bloods are alright and the Consultant is happy with everything, that's it, I'll be discharged from the last 13 years and I can (I suppose) get on with my life knowing that it is all behind me.
His words that it was more likely that any Cancer would be new rather than a recurrence should be some comfort but once you've had it, you do tend to live in the fear that everything that is wrong with you has the potential to be cancer!
I'm trying very hard to get on and block my mind about the past and just get on with the future. In 15 days I'll have had my CT Scan and I really hope that all that needs to happen then is a final Cystocopy and we can draw a big line under this episode.
The CT Scan is sort of OK, they inject dye into you and you need to have a full bladder which is sot of OK but it feels like you are urinating when they automatically whack the dye into you. Again, hopefully that's the last Cannula I'm going to see - I've seen plenty I can tell you!
I must get on with living and shake this day off - it's like being hit with the Flu or some such thing - it's completely debilitating and stops me doing things. I just want to go and sit in the corner and feel sorry for myself at the moment which I haven't done for a long time. I know it is counter-intuitive because it should be the thing that proves there's been no spreading (highly unlikely) and that there isn't too much damage to my system. Certainly I do not appear to have suffered any Kidney damage either through the cancer or the drugs I am on.
So, be on your guard, I felt like I felt 6 years ago and it's not a nice place to be at all. Make sure you catch yourself if you can or at the least realise that every now and then you get a set back, a flash back or something else that takes you off gurad.
I actually almost cried and went into a series of hellish flashbacks right back to the early days of having the diagnosis and so on. It put me into a tail spin and I felt terrible all day and I don't feel a lot better today although I've got rid of the tearful and shaking me that I was yesterday. I forget how bad things were and in some ways I was in a different head space altogether then (some 13 years ago). I was tackling things head on, had the family around and so on. Now, given the time and some sort of trigger like this, I can flash back and truly remember how frightened I actually was inside the hard shell of it all. Perhaps I'm more frightened now than I was then? What I mean is that I know have the time to reflect on it more, can oversee the whole thing rather than the moment I was in and so it affects me more somehow.
I should be happy about all of this really. For if this is clear and the next camera scope is clear, my bloods are alright and the Consultant is happy with everything, that's it, I'll be discharged from the last 13 years and I can (I suppose) get on with my life knowing that it is all behind me.
His words that it was more likely that any Cancer would be new rather than a recurrence should be some comfort but once you've had it, you do tend to live in the fear that everything that is wrong with you has the potential to be cancer!
I'm trying very hard to get on and block my mind about the past and just get on with the future. In 15 days I'll have had my CT Scan and I really hope that all that needs to happen then is a final Cystocopy and we can draw a big line under this episode.
The CT Scan is sort of OK, they inject dye into you and you need to have a full bladder which is sot of OK but it feels like you are urinating when they automatically whack the dye into you. Again, hopefully that's the last Cannula I'm going to see - I've seen plenty I can tell you!
I must get on with living and shake this day off - it's like being hit with the Flu or some such thing - it's completely debilitating and stops me doing things. I just want to go and sit in the corner and feel sorry for myself at the moment which I haven't done for a long time. I know it is counter-intuitive because it should be the thing that proves there's been no spreading (highly unlikely) and that there isn't too much damage to my system. Certainly I do not appear to have suffered any Kidney damage either through the cancer or the drugs I am on.
So, be on your guard, I felt like I felt 6 years ago and it's not a nice place to be at all. Make sure you catch yourself if you can or at the least realise that every now and then you get a set back, a flash back or something else that takes you off gurad.
Tuesday, October 15, 2019
Gosh, I wasn't Expecting That
I attended my new Hospital Urology Department yesterday and met the Consultant Urologist.
We went through my details and history and I updated him on the latest results and he wondered quite what I was doing still having 6 monthly scopes after 12/13 years of being clear.
He suggested that I have a blood test and check PSA and then a CT Scan to check me out as my last one had been some time ago. Then he would do one more flexible cystoscopy and if everything was clear he would discharge me. He suggested that after so long with no recurrence that it was highly unlikely that it would be a recurrence and it would be more likely to be a new Cancer which as you probably imagine has made my day.
OK the CT Scan is a little bit of a challenge with the auto dye thing but hey, that and one more scope and that's it would be great given that I'd settled for having at least one if not two scopes a year for the rest of my life. What's not to like about that???? That's right nothing at all. The more it dawns on me the better I feel as I was resigned to having this hanging over me for all time and perhaps, just perhaps it can all be shut down and dismissed and I can get on with a Cancer free life.
I cannot even begin to tell you how happy I am about this. Moving from one Hospital to another may well have lifted this dread feelings I've had about the ever continual monitoring and worry about a recurrence. Whilst I knew that my chances of recurrence were very remote, it now appears that this Consultant thinks the odds are so little I'm more likely to have a new Cancer than a recurrence of the old one.
I wrote a heartfelt thank you to me old Consultant and I have to say, it was such a great surprise to hear that in 6 months or so I may be fully discharged from the system - today, I am finding it hard to wipe the stupid smile off of my face what a wonderful feeling this is.
Once again, I feel lucky to be in the UK where we have free health care delivered at the point of need and what would probably have killed me 60 or 70 years ago has been diagnosed, operated on, treated with immunotheraphy and reviewed and maintained is brilliant.
I suggested in my letter to my Consultant that if it were not for her and her team I would probably not have been able to see my daughters graduate from university and one of them was married earlier this year, they have both left home, found jobs, houses and their place in life. Whilst my life has been thrown upside down these past 13 years, it has been one hell of a journey and I'm glad to have received the treatment I did. One day they will catch up on the holistic approach for they treat the symptoms and cure the disease but they do little to sort the mind out as it isn't (maybe rightly so) in scope of what they have to do which is to diagnose, treat and cure you.
Despite that, I have to be grateful that I'm probably going to be able to walk away from this scrape alive - how GOOD IS THAT? It's bloody brilliant!!!
We went through my details and history and I updated him on the latest results and he wondered quite what I was doing still having 6 monthly scopes after 12/13 years of being clear.
He suggested that I have a blood test and check PSA and then a CT Scan to check me out as my last one had been some time ago. Then he would do one more flexible cystoscopy and if everything was clear he would discharge me. He suggested that after so long with no recurrence that it was highly unlikely that it would be a recurrence and it would be more likely to be a new Cancer which as you probably imagine has made my day.
OK the CT Scan is a little bit of a challenge with the auto dye thing but hey, that and one more scope and that's it would be great given that I'd settled for having at least one if not two scopes a year for the rest of my life. What's not to like about that???? That's right nothing at all. The more it dawns on me the better I feel as I was resigned to having this hanging over me for all time and perhaps, just perhaps it can all be shut down and dismissed and I can get on with a Cancer free life.
I cannot even begin to tell you how happy I am about this. Moving from one Hospital to another may well have lifted this dread feelings I've had about the ever continual monitoring and worry about a recurrence. Whilst I knew that my chances of recurrence were very remote, it now appears that this Consultant thinks the odds are so little I'm more likely to have a new Cancer than a recurrence of the old one.
I wrote a heartfelt thank you to me old Consultant and I have to say, it was such a great surprise to hear that in 6 months or so I may be fully discharged from the system - today, I am finding it hard to wipe the stupid smile off of my face what a wonderful feeling this is.
Once again, I feel lucky to be in the UK where we have free health care delivered at the point of need and what would probably have killed me 60 or 70 years ago has been diagnosed, operated on, treated with immunotheraphy and reviewed and maintained is brilliant.
I suggested in my letter to my Consultant that if it were not for her and her team I would probably not have been able to see my daughters graduate from university and one of them was married earlier this year, they have both left home, found jobs, houses and their place in life. Whilst my life has been thrown upside down these past 13 years, it has been one hell of a journey and I'm glad to have received the treatment I did. One day they will catch up on the holistic approach for they treat the symptoms and cure the disease but they do little to sort the mind out as it isn't (maybe rightly so) in scope of what they have to do which is to diagnose, treat and cure you.
Despite that, I have to be grateful that I'm probably going to be able to walk away from this scrape alive - how GOOD IS THAT? It's bloody brilliant!!!
Friday, September 27, 2019
All Clear - End of an Era - Start of Something New
Well it is always good to hear all clear once again - that's thirteen years now - gosh how time flies!
I was a bit more stressed for many reasons. It was my last time at this particular Clinic - in fact it was where I was diagnosed and where for the past 4 or 5 years (I guess) I've gone for my flexible Cystoscopy. Every 6 months and they are still keeping it at that although I'm not sure why, I'd have thought they could at least push it to 9 months by now.
I arrived early enough to grab breakfast and some coffees before hand. It was a 9:15 appointment and I needed to get through the rush hour so I left early but my nerves were really shot this time. I normally am able to calm down before the procedure - which I did again - some serious Yoga breathing and just making my body calm but before that I was on edge - I'm not sure if that is just because it was my last time there and I felt like I was being disloyal or what it was. Anyway, they've pronounced me all clear and discharged me from there.
I now go on the 14th October to my local Hospital to meet the Consultant and get things started there. It was going to be another Hospital a bit further away but the local one is good for me - about 10 minutes rather than just over the hour in journey time.
I just wrote a letter thanking my Consultant and her team for everything they've done for me. I am delighted that I am still here 13 years later!
I was a bit more stressed for many reasons. It was my last time at this particular Clinic - in fact it was where I was diagnosed and where for the past 4 or 5 years (I guess) I've gone for my flexible Cystoscopy. Every 6 months and they are still keeping it at that although I'm not sure why, I'd have thought they could at least push it to 9 months by now.
I arrived early enough to grab breakfast and some coffees before hand. It was a 9:15 appointment and I needed to get through the rush hour so I left early but my nerves were really shot this time. I normally am able to calm down before the procedure - which I did again - some serious Yoga breathing and just making my body calm but before that I was on edge - I'm not sure if that is just because it was my last time there and I felt like I was being disloyal or what it was. Anyway, they've pronounced me all clear and discharged me from there.
I now go on the 14th October to my local Hospital to meet the Consultant and get things started there. It was going to be another Hospital a bit further away but the local one is good for me - about 10 minutes rather than just over the hour in journey time.
I just wrote a letter thanking my Consultant and her team for everything they've done for me. I am delighted that I am still here 13 years later!
Friday, August 23, 2019
Changing my Consultant
It feels strange that I would now, after all this time, look to change my Consultant. It has everything to do with distance now that I've moved away from the area. It was relatively easy to get to when I lived nearer but now it is about an hour and a bit away and I have to park away from the Hospital and walk-in adding a further 15 minutes I guess. In the rush hour heading towards London, it is stressful enough without of course having the procedure which, even though I've had so many, is still a bit worrying - about what they will find and a little uncomfortable although I wouldn't say painful it can be a bit stingy!
The last time I drove back and as your "wedding tackle" shall we call it comes back to life, it can make driving home a little uncomfortable.
After having done it for the last 5 years I decided to drop my GP a line to see if I can transfer to the local Hospital. It is only 15 to 20 minutes away and generally (although not always) has good parking available.
It is strange as there is a feeling that you are letting your Consultant down but to be realistic I should have changed some years ago as it just makes sense to go somewhere that is local and that I can get to easily.
The last time I drove back and as your "wedding tackle" shall we call it comes back to life, it can make driving home a little uncomfortable.
After having done it for the last 5 years I decided to drop my GP a line to see if I can transfer to the local Hospital. It is only 15 to 20 minutes away and generally (although not always) has good parking available.
It is strange as there is a feeling that you are letting your Consultant down but to be realistic I should have changed some years ago as it just makes sense to go somewhere that is local and that I can get to easily.
Wednesday, March 13, 2019
Double Clear
Somewhere along the line, I missed that I had a scope last year....
Well, it must have been the late summer and the old problem reared its ugly head again. When they insert the scope I'm certain that it hits the inside of my bladder leaving a small pink mark. Anyway, this time even I had a look at the screen and we couldn't determine what it was. It could have been the old scar but it was "just a mark" and so we decided that we would do a review in three months!
Somehow we both missed it and I had another scope on the 11th March 2019 and this time, with two other Consultants I've never met before. They were pretty good, the scope took a little longer than usual as I think one was learning and the other wanted a quick check. However, no mark and perhaps being later in the day rather than first thing also meant that I was more hydrated than usual? Arnica and paracetamol/ibuprofen taken as before and very little stinging or anything this time.
Anyway, ALL CLEAR!!! Great news and now easily 12 years clear. Two past the magic 10-year marker and they'll see me in 6 months. My Consultant was on holiday which is nice - she deserves it!
Well, it must have been the late summer and the old problem reared its ugly head again. When they insert the scope I'm certain that it hits the inside of my bladder leaving a small pink mark. Anyway, this time even I had a look at the screen and we couldn't determine what it was. It could have been the old scar but it was "just a mark" and so we decided that we would do a review in three months!
Somehow we both missed it and I had another scope on the 11th March 2019 and this time, with two other Consultants I've never met before. They were pretty good, the scope took a little longer than usual as I think one was learning and the other wanted a quick check. However, no mark and perhaps being later in the day rather than first thing also meant that I was more hydrated than usual? Arnica and paracetamol/ibuprofen taken as before and very little stinging or anything this time.
Anyway, ALL CLEAR!!! Great news and now easily 12 years clear. Two past the magic 10-year marker and they'll see me in 6 months. My Consultant was on holiday which is nice - she deserves it!
Friday, January 18, 2019
Bringing It All Back
How strange it is that I decided to get rid of all my old paperwork and notes about my illness. Well, I say get rid of, what I mean is that I archived most of the correspondence by scanning/digitising them, then shredding and destroying everything.
Of course, the only issue I had then was bringing it all back to mind again and I actually felt nauseous as I did it. Every now and then a tear filled my eye as I remembered the particular read and pain I felt, the anxiety and distress and the great debt I owe to my ex and my children and to the professionals and my Consultant without whose skill, I would not be here.
The mind is great because it blots out those black dreadful days and I'm glad it does. Reliving the horrors of those days didn't make me feel great - I doubt it ever would. It does, however, remind me that those dark days are behind me and that the days I have now and before me are much much better.
Of course, I still have regular inspections and when they come about there is a little niggling doubt that it may come back but live your life and forget about the past is the way forward without a doubt. It happened and that's all that can be said. Now, some 12 almost 13 years on, it is but a dim memory and I hope to keep it that way by removing all trace of it from my Office - another file is gone and another less thing to get dusty or to worry about.
Of course, the only issue I had then was bringing it all back to mind again and I actually felt nauseous as I did it. Every now and then a tear filled my eye as I remembered the particular read and pain I felt, the anxiety and distress and the great debt I owe to my ex and my children and to the professionals and my Consultant without whose skill, I would not be here.
The mind is great because it blots out those black dreadful days and I'm glad it does. Reliving the horrors of those days didn't make me feel great - I doubt it ever would. It does, however, remind me that those dark days are behind me and that the days I have now and before me are much much better.
Of course, I still have regular inspections and when they come about there is a little niggling doubt that it may come back but live your life and forget about the past is the way forward without a doubt. It happened and that's all that can be said. Now, some 12 almost 13 years on, it is but a dim memory and I hope to keep it that way by removing all trace of it from my Office - another file is gone and another less thing to get dusty or to worry about.
Subscribe to:
Posts (Atom)