Well, it wasn't unexpected but a letter arrived today delaying my appointment from 21st April to 30th June. That's of course fine by me, I was happy to go in anyway as there probably wouldn't be too many people around and it isn't as if I'm a priority or anything though I'd just like t get this scope out of the way and be discharged and that's it.
It will be almost 14 years to the day that I presented the symptoms (2nd July 2006) and so for those of you wondering, yes, you do get through it and things will get better and suddenly there's light at the end of the tunnel.
Keep well everyone.
Saturday, April 11, 2020
Friday, March 13, 2020
Delay No Doubt
Well with the Corona-virus doing the rounds and the various advice by the Government I'm not holding my breath that my appointment for a flexible cystoscopy will go ahead in April.
Certainly we are all just being careful and many events that we were going to are being postponed or cancelled just in case. I'm off to a meeting tomorrow but I seriously doubt that we will be holding any in the rest of March, April or May the way things are progressing at the moment.
Hopefully, things will improve for the better but for now it is best to hunker down and see what happens. I kind of remember this with some other recent pandemics but this one definitely appears to be causing a high level of worry for people. Let's hope it isn't as bad as it seems.
I'm pretty certain that this would be the last cystoscopy I will ever require but if I have to wait a further 6 months or so, so that others can get treated then that's OK. I'm sure it will be fine.
Certainly we are all just being careful and many events that we were going to are being postponed or cancelled just in case. I'm off to a meeting tomorrow but I seriously doubt that we will be holding any in the rest of March, April or May the way things are progressing at the moment.
Hopefully, things will improve for the better but for now it is best to hunker down and see what happens. I kind of remember this with some other recent pandemics but this one definitely appears to be causing a high level of worry for people. Let's hope it isn't as bad as it seems.
I'm pretty certain that this would be the last cystoscopy I will ever require but if I have to wait a further 6 months or so, so that others can get treated then that's OK. I'm sure it will be fine.
Friday, December 20, 2019
That's Welcome News
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.
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.
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.
Tuesday, July 03, 2018
Twelve Years Ago Today
Yes, it's been twelve eventful years since that day that I arrived at my Hotel and went to the toilet, only to discover that I was urinating a stream of blood. The World Cup was on as I recall and I think we were beaten by Portugal. I spent the next few days in disbelief as I continued to show signs which heaven knows were distressing enough and yet, I didn't feel unwell at that point.
This blog is a testimony to the NHS who sorted me out, the good, bad, ugly and indifferent, the highs and the lows, those who helped and those who shied away, those who came on the journey with me and those who did not.
It's a journey of love, hope and charity. Amazing lows and extreme highs. Looking back, I had one hell of a ride and much of it not caused by Cancer directly. Sure the treatment was a challenge and dealing with mortality and other consequences but I didn't expect my head to have to go through all of that nonsense and of course, there were consequences of my marriage ending (not direct) and the realisation that I had to dig myself out of the "hopeless" space I was in. I say hopeless but it lies in each of us to be able to get out of that blackest of spaces.
Today, I'm a little down in the mouth, it's the day after 2nd July that it all kicked off. It's the 3rd July today and the anniversary of my father's death through Pancreatic Cancer and tomorrow, it's my birthday.
The overwhelming message is that it is great to be alive, you can cure Bladder Cancer although you do tend to live with the threat a lot more as I get checked every 6 months for recurrence.
If you've just been diagnosed, I hope that you will be encouraged that things get better and the main thing is don't think it is going to get fixed in a day, it takes a while longer than that and you have to bear with it whilst they sort you out. Get your head into a good space if you can, relax and remember that you can help yourself as much as your team helps you through good diet, precautionary measures and keeping your head in gear too.
This blog is a testimony to the NHS who sorted me out, the good, bad, ugly and indifferent, the highs and the lows, those who helped and those who shied away, those who came on the journey with me and those who did not.
It's a journey of love, hope and charity. Amazing lows and extreme highs. Looking back, I had one hell of a ride and much of it not caused by Cancer directly. Sure the treatment was a challenge and dealing with mortality and other consequences but I didn't expect my head to have to go through all of that nonsense and of course, there were consequences of my marriage ending (not direct) and the realisation that I had to dig myself out of the "hopeless" space I was in. I say hopeless but it lies in each of us to be able to get out of that blackest of spaces.
Today, I'm a little down in the mouth, it's the day after 2nd July that it all kicked off. It's the 3rd July today and the anniversary of my father's death through Pancreatic Cancer and tomorrow, it's my birthday.
The overwhelming message is that it is great to be alive, you can cure Bladder Cancer although you do tend to live with the threat a lot more as I get checked every 6 months for recurrence.
If you've just been diagnosed, I hope that you will be encouraged that things get better and the main thing is don't think it is going to get fixed in a day, it takes a while longer than that and you have to bear with it whilst they sort you out. Get your head into a good space if you can, relax and remember that you can help yourself as much as your team helps you through good diet, precautionary measures and keeping your head in gear too.
Thursday, June 07, 2018
A Qualified All Clear
I have to say that hydrating for a few days beforehand and using arnica seems to work in lessening the after effects of the flexible cystoscopyy. I also use yoga breathing and just before i have the procedure, 2 paracetamol and 2 ibuprofen which kick in about 10 minutes afterwards.
The procedure took longer and I did sneak a look at the monitor because my consultant saw what she felt was most probably an old biopsy scar. It didn't "look like a tumour" and so we agreed that rather than an operation to investigate, we would reconvene in 3 months to check it out.
I'm ok with that. It's been almost 12 years since original diagnosis. I'm still happy to be here and although those these scopes are challenging, they keep a good eye on me.
The procedure took longer and I did sneak a look at the monitor because my consultant saw what she felt was most probably an old biopsy scar. It didn't "look like a tumour" and so we agreed that rather than an operation to investigate, we would reconvene in 3 months to check it out.
I'm ok with that. It's been almost 12 years since original diagnosis. I'm still happy to be here and although those these scopes are challenging, they keep a good eye on me.
Tuesday, June 05, 2018
Creeping Up On You
It does that, every now and then you get a blast of depression, not the huge overwhelming stuff you had years ago but a sort of deep-seated fear in the pit of your stomach.
Now I'm guessing that a series of events came up together to do this. I always get a "bit cranky" at this time - my 6 monthly (more like 8 monthly this time) scope is tomorrow at 10 am. SO I know I'm not looking forward to that in terms of the procedure and also there is always a nagging doubt when you go in case it isn't the news you actually want to hear. On top of that, last night on BBC1's Panorama was a piece about the late Tessa Jowell who died earlier this year of a Brain Tumour. She used he position in the House of Lords and as an ex-MP to build awareness for the disease and to champion the benefits of the various trials that were going on so that sufferers had access to them.
It was during that programme where a young chap was talking to his daughter who was upset about his tumour and that it had changed a bit as his left side was now paralysed and it was that part of the programme that did for me really. I recall my daughters and how brave they were and once having a conversation with them some years later where, bless them, they thought I was going to say that the cancer had come back - I wasn't going to say that at all but you can see what they were thinking... I'm pretty choked up writing this now because often it is the effect on your family that you also have to deal with. Obviously, you are dealing with your own problems but having children and loved ones also dealing with it is traumatic too.
It's unlike me to get quite as emotionally strange as I am today because normally I go into myself and become quiet and try and remain peaceful and yet today I do feel quite disturbed.
I should be happy really that I am being checked and looked after and that I feel as well as I do. It's funny what the mind will do to itself. I feel that I will need to go do some yoga breathing and just empty my mind for a while to get me past this.
Now I'm guessing that a series of events came up together to do this. I always get a "bit cranky" at this time - my 6 monthly (more like 8 monthly this time) scope is tomorrow at 10 am. SO I know I'm not looking forward to that in terms of the procedure and also there is always a nagging doubt when you go in case it isn't the news you actually want to hear. On top of that, last night on BBC1's Panorama was a piece about the late Tessa Jowell who died earlier this year of a Brain Tumour. She used he position in the House of Lords and as an ex-MP to build awareness for the disease and to champion the benefits of the various trials that were going on so that sufferers had access to them.
It was during that programme where a young chap was talking to his daughter who was upset about his tumour and that it had changed a bit as his left side was now paralysed and it was that part of the programme that did for me really. I recall my daughters and how brave they were and once having a conversation with them some years later where, bless them, they thought I was going to say that the cancer had come back - I wasn't going to say that at all but you can see what they were thinking... I'm pretty choked up writing this now because often it is the effect on your family that you also have to deal with. Obviously, you are dealing with your own problems but having children and loved ones also dealing with it is traumatic too.
It's unlike me to get quite as emotionally strange as I am today because normally I go into myself and become quiet and try and remain peaceful and yet today I do feel quite disturbed.
I should be happy really that I am being checked and looked after and that I feel as well as I do. It's funny what the mind will do to itself. I feel that I will need to go do some yoga breathing and just empty my mind for a while to get me past this.
Tuesday, May 08, 2018
Infrequent Posts - Just a memory now
Bladder Cancer is just a memory now and I suppose I only think about things two or three times a year - normally around scope check up time (which must be due soon).
I'm just writing because someone I know is under the knife today for Bowel Cancer. He's lucky in that they've found it, it's operable and they've got him in very quickly which is great news. He wasn't looking forward to it, who does but at least they will be able to sort him out and he can move on.
I had a chat about the mind stuff and trying not to rush or push things too early on.
Life goes back to normal - it takes a while, it is all consuming at the beginning and then it all settles down and you get back to normal - whatever normal is :-)
I'm just writing because someone I know is under the knife today for Bowel Cancer. He's lucky in that they've found it, it's operable and they've got him in very quickly which is great news. He wasn't looking forward to it, who does but at least they will be able to sort him out and he can move on.
I had a chat about the mind stuff and trying not to rush or push things too early on.
Life goes back to normal - it takes a while, it is all consuming at the beginning and then it all settles down and you get back to normal - whatever normal is :-)
Tuesday, October 10, 2017
Goes the day well - another clean bill of health
Well that was good. A later appointment meant that I dosed myself up with Paracetamol and ibuprofen before heading off to the Hospital and used Arneka last night, this morning and just as I had the flexible cystoscope with another round of painkillers.
A little stinging and that's about all and an all clear again. 11 years or more now. Delighted with progress and hopefully a boost to all of those who might be starting out on the Bladder Cancer journey that there is life beyond it even though you have to carry on being checked out for the rest of your life. Very pleased with the result. Another 6 months until the next one.
A little stinging and that's about all and an all clear again. 11 years or more now. Delighted with progress and hopefully a boost to all of those who might be starting out on the Bladder Cancer journey that there is life beyond it even though you have to carry on being checked out for the rest of your life. Very pleased with the result. Another 6 months until the next one.
Friday, July 21, 2017
Sixty - Not Out
I had a few moments to myself this morning and realised that I'd not put anything on this blog for a while and I hadn't marked my "anniversary" of the 2nd July - when I first had the real presentation of my Bladder Cancer. That was 11 years ago and I turned 60 on the 4th July. July is always a bit weird anyway as the 1st in my mother's birthday, the 2nd, the day I knew something bad was happening to me, the 3rd was the day my father died (can that be 5 years ago?) and the 4th is my birthday.
I hardly even thought about it this year and that's the message of this blog post really, after a while other things will occupy your mind and you get back on with life and living. I'm really quite lucky, I've moved into a lovely house in the country and have fields all around me, sheep grazing in the field at the back. I've got my health back, I'm happy and whilst I still work, I don't have to knock myself out to do that either.
We went away for my birthday to somewhere I've always wanted to go. Here is a picture of the view from the Hotel we stayed at - and no, it's not Photoshopped or doctored in any way. It's in Wales and I could tell you whereabouts but afterwards, I'd have to shoot you :-)
I hardly even thought about it this year and that's the message of this blog post really, after a while other things will occupy your mind and you get back on with life and living. I'm really quite lucky, I've moved into a lovely house in the country and have fields all around me, sheep grazing in the field at the back. I've got my health back, I'm happy and whilst I still work, I don't have to knock myself out to do that either.
We went away for my birthday to somewhere I've always wanted to go. Here is a picture of the view from the Hotel we stayed at - and no, it's not Photoshopped or doctored in any way. It's in Wales and I could tell you whereabouts but afterwards, I'd have to shoot you :-)
Wednesday, April 26, 2017
Clearly a Delay - but still ALL Clear
It's always great to hear your Consultant saying "good, good, that's good... Yes, All clear!" However the last time I heard that was, surprisingly, in January 2016.... That's the last time when I had to go in for a potential biopsy only to be told that after they'd knocked me out there was nothing there.
It was only a week or so ago that it dawned on me that I hadn't heard from the Hospital and so I rang them yesterday to firstly let them know that I was moving (at long last my partner and I are moving out to a semi rural house). I then just happened to mention that I'd not heard anything about having a flexible cystoscopy. They rang back within the hour and offered me an 8:15 a.m. appointment so I was a little shocked at that as believe me we are in chaos packing up the contents of two houses and trying to make them fit into one!
It was all very good, I got there early and parked, had lots of water - perhaps 2 pints by the time I walked in and was seen straight away with an apology for the delay.
My consultant wanted to know if I wanted to transfer away to a nearer hospital but I declined as I know and trust my Consultant.
The main thing is all is clear and I'll be seen again in 6 months.
It was only a week or so ago that it dawned on me that I hadn't heard from the Hospital and so I rang them yesterday to firstly let them know that I was moving (at long last my partner and I are moving out to a semi rural house). I then just happened to mention that I'd not heard anything about having a flexible cystoscopy. They rang back within the hour and offered me an 8:15 a.m. appointment so I was a little shocked at that as believe me we are in chaos packing up the contents of two houses and trying to make them fit into one!
It was all very good, I got there early and parked, had lots of water - perhaps 2 pints by the time I walked in and was seen straight away with an apology for the delay.
My consultant wanted to know if I wanted to transfer away to a nearer hospital but I declined as I know and trust my Consultant.
The main thing is all is clear and I'll be seen again in 6 months.
Saturday, July 02, 2016
Hard to Believe - TEN years today
Ten years ago today I presented with the classic symptoms of Bladder Cancer and my life changed forever.
Within weeks I had life saving surgery and within that first year I had been scanned and had a second duplicate operation. I didn't think that I'd make ten years but hoped for five. I was concerned that I'd not see my children grow up, Graduate and go on to live their life as adults. I hadn't really thought then that I'd lose my marriage but it gradually crept up on me and now I'm almost divorced.
However, I'm here, alive, living in a post Cancer world and I'm in pretty good health. I'd like to be slimmer and fitter than I am at the moment and I'm back on course to lose the weight I've piled on this past two or three years since I left the marital home and setup on my own.
To anyone who is newly diagnosed or perhaps in their first or second year of treatment - it gets better and the intrusion on your life gets less. I hardly think about having had Cancer these day unless a song, film or TV Programme remind me. I still have six monthly check ups and as recently as January this year have had to have an operation to investigate a red mark in my bladder - the third such false positive I've had. Of course, the main thing is that as upsetting as these things are, it is better to have the operation to remove all doubt than to suffer a relapse. I've forgotten how many operations I've had in ten years - I'm going to estimate it at around 12 or 14. I've had BCG treatments and think that they are around the 24 to 32 mark. With the other procedures we are talking a long time attending hospital and waiting around or just lying down recovering.
The fallout from the treatment was probably the worst of it all. Even today I'm still tired and can drop to sleep in an instant. There's no doubt that the treatment is exhausting but if you think that they were using the body's own defence mechanisms to fight the cancer it is perhaps understandable.
I finally feel that I'm mentally on the right track too these days. For the past three years I've been in a much better place. A lot of that is to do with my attitude to everything and I think after I read Eckhart Tolle's 'A New Earth' it helped me to get rid of the emotional and head baggage I carried around all the time. I don't have that weight on me anymore. It takes a little doing but I no longer carry around any of the 'problems' I used to have. I have a clear head which is great. There's nothing for my mind to chew over and get wound up about. I don't worry about the past or the future. The past is over, the future hasn't happened and the only place to live is here (in the Now).
I'm grateful to the medical professionals who treated me and to everyone who supported me. I' delighted that the blog might is some small way help. Here's to the next 10 years and lets hope continued health and well-being.
Regrets? Yes well my marriage - my Ex really looked after me and held it all together and all I did was walk out on her but there's more to that than I want to say here. It's all amicable (as these things can be) and after almost three years things get back to 'normal' whatever you perceive normal to be.
So ten years on, I'm here where some of my friends and my father are not, in their cases their cancers were aggressive and not operable or treatable. The advances in treatment though are impressive, let's hope that continues and more people recover or are cured altogether.
Life after cancer? You bet, things are great. I hope within the year to have moved from rented accommodation to owning a place somewhere semi-rural away from all the hustle and bustle where nature is right at your doorstep and I can enjoy the life I've now got back. What good is it if you survive and don't take full advantage of the life you've been given back?
There's hope, there's light at the end of the tunnel. You must do your bit too and work with your medical team. You'll have to sort your own head out - they don't do that. If anything over the ten years it was the head f*** that I had the problems with. In the UK there really isn't much to help you (or there wasn't ten years ago). It's a hell of a roller coaster ride and after ten years it's just about stopped apart from twice a year when I go to get checked out - these "judgement days" (Thanks for naming our flexible cystoscopies that Steve Kelley). It is the only time that I think about the possibility of recurrence which, given ten years after presenting with cancer is a remote possibility. The longer you go without a recurrence the better chance you have of full recovery.
Life's good....
Within weeks I had life saving surgery and within that first year I had been scanned and had a second duplicate operation. I didn't think that I'd make ten years but hoped for five. I was concerned that I'd not see my children grow up, Graduate and go on to live their life as adults. I hadn't really thought then that I'd lose my marriage but it gradually crept up on me and now I'm almost divorced.
However, I'm here, alive, living in a post Cancer world and I'm in pretty good health. I'd like to be slimmer and fitter than I am at the moment and I'm back on course to lose the weight I've piled on this past two or three years since I left the marital home and setup on my own.
To anyone who is newly diagnosed or perhaps in their first or second year of treatment - it gets better and the intrusion on your life gets less. I hardly think about having had Cancer these day unless a song, film or TV Programme remind me. I still have six monthly check ups and as recently as January this year have had to have an operation to investigate a red mark in my bladder - the third such false positive I've had. Of course, the main thing is that as upsetting as these things are, it is better to have the operation to remove all doubt than to suffer a relapse. I've forgotten how many operations I've had in ten years - I'm going to estimate it at around 12 or 14. I've had BCG treatments and think that they are around the 24 to 32 mark. With the other procedures we are talking a long time attending hospital and waiting around or just lying down recovering.
The fallout from the treatment was probably the worst of it all. Even today I'm still tired and can drop to sleep in an instant. There's no doubt that the treatment is exhausting but if you think that they were using the body's own defence mechanisms to fight the cancer it is perhaps understandable.
I finally feel that I'm mentally on the right track too these days. For the past three years I've been in a much better place. A lot of that is to do with my attitude to everything and I think after I read Eckhart Tolle's 'A New Earth' it helped me to get rid of the emotional and head baggage I carried around all the time. I don't have that weight on me anymore. It takes a little doing but I no longer carry around any of the 'problems' I used to have. I have a clear head which is great. There's nothing for my mind to chew over and get wound up about. I don't worry about the past or the future. The past is over, the future hasn't happened and the only place to live is here (in the Now).
I'm grateful to the medical professionals who treated me and to everyone who supported me. I' delighted that the blog might is some small way help. Here's to the next 10 years and lets hope continued health and well-being.
Regrets? Yes well my marriage - my Ex really looked after me and held it all together and all I did was walk out on her but there's more to that than I want to say here. It's all amicable (as these things can be) and after almost three years things get back to 'normal' whatever you perceive normal to be.
So ten years on, I'm here where some of my friends and my father are not, in their cases their cancers were aggressive and not operable or treatable. The advances in treatment though are impressive, let's hope that continues and more people recover or are cured altogether.
Life after cancer? You bet, things are great. I hope within the year to have moved from rented accommodation to owning a place somewhere semi-rural away from all the hustle and bustle where nature is right at your doorstep and I can enjoy the life I've now got back. What good is it if you survive and don't take full advantage of the life you've been given back?
There's hope, there's light at the end of the tunnel. You must do your bit too and work with your medical team. You'll have to sort your own head out - they don't do that. If anything over the ten years it was the head f*** that I had the problems with. In the UK there really isn't much to help you (or there wasn't ten years ago). It's a hell of a roller coaster ride and after ten years it's just about stopped apart from twice a year when I go to get checked out - these "judgement days" (Thanks for naming our flexible cystoscopies that Steve Kelley). It is the only time that I think about the possibility of recurrence which, given ten years after presenting with cancer is a remote possibility. The longer you go without a recurrence the better chance you have of full recovery.
Life's good....
Thursday, February 18, 2016
Cancer - Some interesting information
I know that Mercola isn't everyone's "cup of tea" but there are some real nuggets of information that come out and this one about Cancer really struck my eye today. There is a piece right at the bottom about what sugar does.
It's time we started taking the advice about sugar seriously. A recent report here in the UK looked at some of the sugar content of over the counter drinks - they were frightening with sometimes up to 20 teaspoons of sugar in a soft drink...
Could it be that carbohydrates really are the bad guys?
It's time we started taking the advice about sugar seriously. A recent report here in the UK looked at some of the sugar content of over the counter drinks - they were frightening with sometimes up to 20 teaspoons of sugar in a soft drink...
Could it be that carbohydrates really are the bad guys?
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