Life Goes On

 Well, here we are in a strange world where liberty is taken away and most people are happy to let the Government and an unelected bunch of Communist Health Officials run their lives.

The National Health Service appears to have imploded and despite its Cult Status has completely failed to protect the health of the nation whilst concentrating on eliminating old people and trying to justify having a 12,000,000 people backlog (there's only 68,000,000 of us anyway).

It's hilarious to see that "face coverings" are considered to be recycled in the local supermarket!   If they are contaminated with the deadliest virus known to man would you be putting them in biohazard bins and burning them?  

I'm afraid none of it adds up and the vast majority of the population has bought into a complete nonsense.  I hope they wake up soon especially now as they are coming after the children with their experimental transfection.  I think that with a 99.997% chance of dying from this most people would have worked out their odds and verified their consent (or non-consent) but they all seem to be under some sort of spell.  Wake up.

   

It's Great News - But Why So Flat

It must be the strangest reaction you'd ever expect.  I feel happy that I am now clear of this episode of my life which has taken a quarter of my life up so far.  And yet...... something is missing.

I do not feel massively triumphal or deliriously happy or in fact any of the things you see on TV or Films.  I feel relieved I'd say and perhaps like a load has lifted from my shoulders and yet the reaction I thought I'd have is not bursting out.  I suppose as an INTJ I look at this as a matter of "it is what it is" and there can be no other way of looking at it really.

I met with an old friend for breakfast this morning and we had a good old natter especially as he had similar problems and he had the nuclear option to start with and so was "cured" quicker than I but he probably had more damaging after effects!

Anyway, here we are, at the end of this road and the start of something new.  Life without Cancer (or the after-effects of Cancer) and onwards we go.  The spectre of it coming back - or new cancer, however, hovers over me like a cloud.  14 years is a long time to be free of this all and I truly hope that really is it behind me.  We live in hope and travel on for the moment in the present, in the now for the past is over and the future is yet to be.

Well That's All Folks!

 14 Years, 2 months and 26 days later I have had my last flexible cystoscopy and I have been discharged from the care of the Hospital.  Strangely enough, it was the quickest scope I've ever known, I wonder if they have new equipment it seemed to be over quickly, I didn't feel that much either.

How reassuring it was to hear that all was clear and OK and that I was now officially discharged from the care of the Hospital.

I imagine you'd expect there to be a yell of celebration or some such but, I felt quite strangely a little numb and not sure what I felt.  Even now a few days later, I'm not celebrating or getting excited.  I think I should, maybe after it has all sunk in I suppose.  It's now time for a little reflection.  I lost a number of friends to their own battles in those years and right now - I need to just let it all sink in, wash over me and I think I'll be happy in a week or two.  I'm smiling as I write this though which is progress.

For anyone about to commence on this journey or perhaps is already on the road, it gets better and it is survivable.  Keep faith or focus or both and keep going on even though sometimes it gets you down.

It changed my life, turned my family's lives upside down and taught me many life lessons on the way.  I will, I am sure, be happy about this soon, for now, after 14 years, I'm still blinking in the sunshine.

Best wishes to you all

No Apology

 You have to laugh at the Omnishambles that is going on at the moment.  The reaction to the COVID-19 virus is laughable and surely anyone who can apply some logic and critical thinking to the "makes it up as we go along" politicians of the day can see that you can drive a bus through their stupid rules which can have little if any basis in scientific fact.  Rules can change on certain dates and times and the virus, which you can't see unless you have an electron microscope) knows exactly what time and place to start infecting people whether you have a mask on or not.

Out of all of this nonsense, I guess my exploding bomb of a letter that I sent to the local Hospital and followed up with a small bomb to my GP must have done something.  No apology (who did I think I was kidding that I'd get one) but an Appointment with three working days notice for Monday.  There was still no advice about wearing a face nappy or muzzle so I won't bother turning up with one.  It totally wrecks what I was going to do but, sod it, I will turn up, have the scope and hopefully, they can say the magic words and I can be discharged from this 14 years of Bladder Cancer - well Bladder Cancer recovery perhaps is more like it.  They got rid of the Cancer finally in October 2006 when they did a seconf TURBT.

So I am glad that they put me back onto the program as it was their own processes that hung them.  They still haven't followed those processes even this time (what was I expecting).

Anyway, the good news is that I will go despite this stupid muzzle edict and hopefully they will see me and that can be that.

I feel extermely sorry for the other Cancer sufferers at the moment for whom the NHS and the Government of the day have let down so disgustingly.  With 450 to 500 people a day dying from Cancer they are sacrificing and doubling down on them for the sake of a few a day now.  Bilions spent on COVID and some sort of Vacinne for disease that 99.95% of people will survive.  That money would be better spent on Cancer and the other primary causes of death.  COVID is way down the list now and as all virus pandemics will fade away but still be a threat ongoing just like seasonal flu is every year.

NHS? A Bit of a Joke

 I am most surprised given the huge number of administrators that the NHS hasn't got back to me about my complaint.

I think that this alleged Covid problem didn't actually materialise and nobody is actually doing anything constructive to make the NHS learn and restructure from this utter omnishambles.  With a handful of deaths a day now and what is it 1.25 or 1.5 Million employees of the NHS they were hardly overwhelmed.  Now the "Second Wave" hasn't actually materialised (although they are still worried it will) and if they are worried why the hell shut down all the Nightingale Hospitals.  God knows you'll need them soon for all the Cancer patients and all the poor sods who's operations and treatments have been postponed. 

But it is still OK to Make Tik Tok videos guys and show us how twerking with equipment and PPE is keeping up morale.

It's total bollocks and everyone needs to shake out of this nonsense and get on with life.  As for me, well I guess I am miraculously OK because a clerk has said so not my Consultant!  Utter bollocks and a shabby end to an otherwise successful diagnosis and treatment! 

The End Of The Journey (Or Is It?)

 What a strange thing.  Sending me to the wrong Hospital on the right day.  Not informing me that I needed a Mask.  Not following their own procedures (7 day and 48-hour phone call confirmations) and then another appointment arrives which I request a postponement from until this stupid face nappy edict from the Government (you won't find a health professional worth their salt who thinks a scarf will stop a virus) is eased.  If you've ever had a Flexible Cystoscopy you'll know the last thing you need is something wrapped around your face restricting your breathing let alone having to wear one throughout the visit.

The NHS, true to recent form said that their first mistake was a cancelled appointment and that me asking to postpone was also a cancelled appointment so without reference to my Consultant I'm discharged from care.  So do you think that's to make the number up?  I'm sure it is, they've been found out - most of the Nightingale Hospitals never had a patient.  I've a feeling that my appointments people weren't paying attention to my nicely worded letter and were too busy making up TikTok routines to be bothered with patients.

So this is how the journey ends - some jumped up clerk or perhaps a computer (for the letter came with appointment information etc) just used a spreadsheet and bang - that's me off the list after 14 years and if you've been with me you'll know that I've had quite a journey of cancelled appointments and I think something like 6 or 7 this year alone by the NHS themselves.  

They saved my life 14 years ago and I'm sure that the surgeons and nurses are fine but the management and administration staff - well I wouldn't trust them to sit the right way up on a toilet!

I've written a very strongly worded letter to them and my GP and followed that up with another to my GP.  I will write to my Consultant and express my dissatisfaction with the Hospital.  I feel some more heavy serious letter writing may go on beyond that as I have been treated appallingly by someone or something that cannot determine an outpatient appointment from a procedure and a request from a cancellation.

Sod them all.  I'm lucky as I've never had to cancel an operation or an appointment unless the NHS has done it to me sometimes just before surgery!  So I feel vindicated in launching a tirade of complaints to them.  I certainly hope they are ready for me.

I only had this one check left and I would have been discharged anyway so I'm not that worried about it.

You Didn't Tell Me That

Yes, once again the procedure (if that was what it was) was rescheduled.   I was to have two phone calls to confirm and neither happened and so guessing that I ought to go, went there to find that they hadn't told me to have a face mask!!!  So turned around and came home.

World Class NHS?  Sometimes I wonder about them and this recent crisis.  Everyone appears to have wet their pants and the normal procedures that they want you to go through are, like many non Covid Patients - thrown under a bus!

I despair that they cannot keep appointments and change these at the last moment. That they don't actually tell you what you are being seen for and that they are unable to follow their own instructions about them contacting you 7 days and 48 hours ahead worse than that, they totally neglect to tell you that you need to find a surgical mask to actually go into a Hospital!

I'm waiting to see if they will even contact me now - I kind of doubt it as they probably haven't even worked out that I wasn't there!  

Not Unexpectedly - Appointment delayed

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. 

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.

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.

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!  

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.

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.

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!!!

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!

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.  

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!

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.

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.  

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.