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.  

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.

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.

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 :-) 

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.

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 :-) 

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.

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....

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?  

Tuesday, January 26, 2016

ALL CLEAR - Third False Positive - Blood Pressure Normal - What Can I Say?

Pleased but what a horrible couple of weeks.  My Blood Pressure was truly off the scale even after medication but (not surprisingly) as they tested me post operation was back down to more reasonable and acceptable levels.  The nurses were suitably impressed.  I hope that stays like that so I can show my GP in a weeks time.

The cannula was put in at my wrist which means I can't actually wear my watch at the moment :-) The Day Unit was perhaps the best environment I've been to - you walk to Theatre and I kind of realised that all was OK as I was coming around quite fast.  My Consultant told me that she couldn't see the red patch she had seen at the Flexible Cystoscopy in December.  

That's the good news from all of this - it's still clear, has been clear for years despite now three of these false positives.  Maybe we need to "manage" these better as the cost of an Operation must be more than of a Flexible Cystoscopy and perhaps if they see a red patch again they can follow up in a few weeks. Perhaps I need not empty my bladder so fully - I still believe the scope enters the bladder and hits the bladder wall making these red marks.

I can do without having Operations of course but - at least the outcome is positive.  That's the main thing.

For now I'm continuing the Baking Soda/Bicarbonate of Soda once a day.  I'm keeping away from Carbohydrates and I'm back on my no beer regime :-( well infrequent beer regime.  It's quite interesting drinking water most of the time :-) I've also dropped off nearly all Carbohydrates in my food - the weight is beginning to fall off.  So that's no potatoes, pasta, processed foods, no root vegetables, no cakes, pastries, sweets, beer, biscuits and so on.  I am ashamed to say that in the last 2 years I've put back all of the weight I lost and so I need to start again and this time keep on it for good - my Blood Pressure and overall health are, after all, important to me and just tweaking my lifestyle isn't too much of "an ask".

Anyway, clear, phew, scary as shit to have thought it might have come back again but perhaps the shot across the bows I needed to halt my eating and drinking the wrong stuff?

Monday, January 25, 2016

Ten Minutes to the Off

Ten minutes until we head off to Hospital.  After the pre-assessment pointed out I had high Blood Pressure I had to arrange to get meds to sort that out and got a new Doctor in the process - one I actually like - he is serious and humorous at the same time if that is possible.

Anyway - here we go again - a Rigid Cystoscopy to see what the 'Re Mark' actually is - not long to wait to find out....

Tuesday, January 05, 2016

Assessment and Operation Days set

OK so I have to go to the Pre-assessment this Thursday at 3.  Of course it is in the Hospital with no real Car Park!  How can they have rebuilt it with less car parking?  The operation is scheduled for the 25th January and a start time of 07:30 and you can bet that I'm going to get this checked this time as the last two times as well as on other occasions I've been there and not had the procedure until the late afternoon all under 'nil by mouth' conditions.  I'm not having that again as it is just stupid to dehydrate someone who actually needs to get passing liquids through them as soon as possible after the procedure!

I'm glad that the Cytology is all clear - that bodes well for the operation and any biopsies they may take.

Friday, December 18, 2015

Mixed Results

Now this has happened before so I'm not overly concerned apart from the whole going back through the procedure all over again.

The mixed results are that the Cytology shows all clear, yet the Cystoscopy shows a small red mark although everywhere else is clear. Upshot is an operation in the New Year for a biopsy to be taken. It has happened twice before when they operated they found nothing there so let's hope that is what they find this time. Still let's be upbeat about this they don't take chances and even though it is uncomfortable it is far better than the alternative.....

Thursday, November 12, 2015

Judgement Day

That was nice, got a call to book the appointment although they then changed the date but an early one this time 08:15 and back at the Private Hospital as the equipment isn't working at Beckenham Beacon and so it is Shirley HIlls which means I can get parked and it is nicer so I feel a lot less stress there.  I also know it will be my Consultant who will do the procedure so again, it all means that things will go smoothly.

18th December at 08:15 - here's hoping for a winning streak and another all clear.