5 - it's a magic number

Yes - 5 years - the 5 year survival rate and here are the UK survival rates - suffice it to say that age, prognosis and other factors also play a part in all this. I don't suppose I really knew that much early on and so like many who are diagnosed wondered just how long I'd last and early on, faced up to death - stared it in the face and decided that I'd say "no thanks". I was almost 48 and on the eve of my 49th birthday. So age was on my side, I did have a high grade cancer but it hadn't gotten outside of the bladder so in reality, as long as they could cut that out and control it so it was contained then they'd be able to save me and that they did.

The main thing is that I'm here now and thanks to the wonders of modern medicine and science and the skill of my Consultant and her team. I look back on 5 years and I'm amazed how far I've come and let me tell you how pleased I am to be here still! :-)

5 Years - it hardly seems possible....

5 Years

A bit of fun after 5 years. The first one may have been my outlook 5 years ago and the second one is how I feel now :-) The first is quite a doom laden gloomy outlook - basically in 5 years, that's your lot sunshine and the second one is a far better outlook in 5 years.

Here are a couple of online videos to watch unfortunately they aren't embeded!:

The first is 5 years by David Bowie a bit down beat :-(

http://youtu.be/louXPUW7tHU

The lyrics are:

Pushing thru the market square, so many mothers sighing
News had just come over, we had five years left to cry in
News guy wept and told us, earth was really dying
Cried so much his face was wet, then I knew he was not lying
I heard telephones, opera house, favourite melodies
I saw boys, toys electric irons and t.v.s
My brain hurt like a warehouse, it had no room to spare
I had to cram so many things to store everything in there
And all the fat-skinny people, and all the tall-short people
And all the nobody people, and all the somebody people
I never thought Id need so many people

A girl my age went off her head, hit some tiny children
If the black hadn't a-pulled her off, I think she would have killed them
A soldier with a broken arm, fixed his stare to the wheels of a Cadillac
A cop knelt and kissed the feet of a priest, and a queer threw up at the sight of that

I think I saw you in an ice-cream parlour, drinking milk shakes cold and long
Smiling and waving and looking so fine, don't think
You knew you were in this song
And it was cold and it rained so I felt like an actor
And I thought of ma and I wanted to get back there
Your face, your race, the way that you talk
I kiss you, you're beautiful, I want you to walk

We've got five years, stuck on my eyes
Five years, what a surprise
We've got five years, my brain hurts a lot
Five years, that's all we've got
We've got five years, what a surprise
Five years, stuck on my eyes
We've got five years, my brain hurts a lot
Five years, that's all we've got
We've got five years, stuck on my eyes
Five years, what a surprise
We've got five years, my brain hurts a lot
Five years, that's all we've got
We've got five years, what a surprise
We've got five years, stuck on my eyes
We've got five years, my brain hurts a lot
Five years, that's all we've got
Five years
Five years
Five years
Five years

The second one is 5 Years Time by Noah and the Whale

http://youtu.be/T8YCSJpF4g4

Here are the Lyrics - far more uplifting I think :-)

Oh, well, in five years time we could be walking round the zoo
With the sun shining down in every me and you

And there'll be love in the bodys of the elephants tool
I'll put my hands of your eyes, but you pick through

And there’ll be sun, sun, sun
All over our bodys.
And sun, sun, sun
I’ll die in next
There’ll be sun, sun, sun
All over our faces
And sun, sun, sun
So, what the hell

‘cause I'll be laughing around your silly little jokes
And we’ll be laughing about how we use to smoke
All those stupid little cigarettes and drinks to put wine
‘cause it’s what we need to have good times

But it was fun, fun, fun
When we were drinking.
It was fun, fun, fun
When we were drunk
And it was fun, fun, fun
When we were laughing
It was fun, fun, fun
Oh, it was fun.

Oh, well, I look while you’re saying: “it’s the happiest that I've ever been”
And I'll say: “i love to feel that i have to be James Dean”
And you say: “yeah, and I feel a pretty happy too, and I'm always pretty happy when I'm just thinking about with you”

And will be love, love, love
Love through our bodys.
Love, love, love
All through our minds
And will be love, love, love
All over her face
And love, love, love
All over our minds.

And I'll remember all these moments suggesting my head
I'll be thinking about then and there's lying in bed
And I know that you believe that might not keeping come through
But in my mind I'm having a pretty time with you

Five years time
I might not know it
Five years time
We might not speak
And five years time
We might not care about
Five years time
We might to prove it along

Oh, there'll be love, love, love
Wherever you go
There'll be love, love, love

01:15 Friday morning

What on earth am I doing sitting here at that sort of time for goodness sake! I'm charged today - I was flashing back through some of the work I'd done and was mightily impressed with what I'd achieved to date. You forget quite how much ground you've covered when you are working on your own so much.

I pulled out some quite large documents and just needed to top and tail them and issue them. Tomorrow I'll tidy up some of the others and we should soon be ready to get towards finishing things off in our business plan. A big meeting next week to settle and finalise numbers for the next phase and we will probably be in a good position to really leap forward.

I'm feeling OK and the only thing I've noticed is not having done my exercises for a week and a half or so - I'm feeling now that I ought to get back on track so I intend to do that tomorrow. My diet was brought to an abrupt halt yesterday as I forgot we were going out for a meal. The beer was excellent so I just had to have a couple and added to Tuesday's drink and food I'm feeling somewhat guilty but I've gone back to basics today and tomorrow should see me back on track.

Leg Cramp

I'd forgotten - until Tuesday that is - about how they must stick your legs in stirrups - how do I know this? Well I did a fair bit of walking perhaps 4 miles in total getting to an event up in London (which was rather good). My leg just hurt like hell - right at the base of the calf muscle and it was only looking back on the blog I noticed that I'd had leg trouble before. It was bad yesterday - it felt like it was totally stiff as if in a cramp tye seizure - I used one of the DVT stockings from the Hospital and have worn that since last night and it appears to have helped a bit. I am also making sure I get in and out of my seat on a regular basis to move it.

I went to Altitude 360 on Tuesday as my business colleague and I were invited to celebrate the company we are partnering with who received the Queens Award for Innovation - the 2nd time they've won it and Dr. Liam Fox the current Defence Secretary was there and many others from other walks of life, hence I didn't mention it at the time. It's quite an interesting venue as you get to see a lot of London from the Tower's 28th Floor - unfortunately it wasn't the nicest day but we still managed to see quite a lot and had an enjoyable time.

We met some good people there and no one thought that our proposition was barking mad so that was a good sign and we were introduced to some very interesting people.

What it looks like in a plan

Click the image to enlarge it.

I decided I'd map out what the last 5 years have looked like in terms of Operations and Treatments and Flexible Procedures and the one IVU. I added some traffic lights (it's not my fault - I'm a Program Manager and I need these things to show I can do my job! :-) ).

It's a busy old time and if you consider that in 2007 when I was trying to help set up that other business - I was having BCGs and 2 operations. In 2008 I started at the Charity and even then my schedule was pretty bad - good grief I had no idea it was that disruptive. If you consider that for 24 hours after BCG you really can't do anything and even a day after that you are unlikely to be at your best you can see how quickly time off work would accumulate. There are a total of 24 BCGs so that's close to 24 days off but quite likely to be close to 36 in total as it would be a half day on the Monday and most of Tuesday. Each operation and there have been 10 would have meant around a week off but in two cases it was close to a month (the first TURBT), 2 weeks (Re-TURBT) and last years Operation took me out for about a week and a half. That's 4+2+7+1.5 = 14.5 weeks in terms of operations and time off. Add to that 10 out patient appointments of half a day (5 days) and the IVU (1 day) and then the 3 flexis at half a day (1.5) and that adds up to around

36 days + 72.5 days + 5 days + 1 day + 1.5 days = 116 days or 23.2 weeks. If you add the days that I didn't go to work because of Post Cancer Related Fatigue - it could easily top 25 or 26 weeks - around about half a year in total. In 5 years, 10% of my time has been used up in some sort of procedure, treatment or recovery.

It will be 5 years this Saturday since that fateful day in 2006 when my life altered for ever. What a Roller Coaster Ride. I'm actually pretty glad I made it to the 5 years - I didn't think that was going to happen - or I wasn't sure it was is probably the right way of looking at that.

It hasn't all been a negative experience though. I'm a quite different person now and I have different values and a different outlook on life. It's not quite been an epiphany but it has changed the way I look at material things and life in general. In a way I wished there had been a more painless way of finding this all out :-)

Bladder Cancer may be a bit different to other cancers (but I don't know). You would find it difficult to know you had it - you can't actually feel it as such. However, the treatment they give you (and I'm sure this is pretty much the same for other cancers too) is the thing that makes you ill, fatigues you, and dare I say it makes you feel ill (of course it is making you better - therein lies the great irony of treatment - it DOES make you better but at the same time makes you feel ill).

So I'll leave you with the chart to ponder. Now work out what all those visits must have cost? 10 Operations, theatre staff, anaesthetists, nurses, cleaners, caterers, porters, drugs, equipment, heating, lighting, back room staff etc. 24 BCGs, the drugs, the throw away equipment, the nurse(s), the bio hazard precautions and the disposal costs. That's why bladder cancer is the most expensive of them all. I could be being monitored for another 25 or 30 years - I'm in my early 50s so it is possible, now think of the cost? I'm rather glad that I'm not paying directly for this myself, rather my NI payments over the years are.

Stage and Grade of Tumours etc

I re-read some of my notes today and had quite forgotten one phrase that rattled me which I'll repeat below.

Here is a list of stage and grade from Cancer Research UK

My first diagnosis was G3pT1 with earlier invasion. That's:

G3 - Grade 3 cancers have cells that look very abnormal - they are called 'high grade' or 'poorly differentiated' and are more quickly growing and more likely to spread.

p - I'm not sure if this is papiliary or pathological state

T1 - the cancer has started to grow into the connective tissue beneath the bladder lining.

It was described as "moderate size so it does represent potential risk to him"

That was in August 2006!

By October 2006 I had CIS which is Carcinoma in Situ which is also high grade.

CIS - very early, high grade, cancer cells are detected only in the innermost layer of the bladder lining.

This is when I started BCG Immunotheraphy Treatment. I had 6 rounds of BCG

In May 2007 there was one small area of CIS and I had a further course of 6 BCG instillations.

In November of 2007 I was clear no evidence of malignancy.

I then had 3 maintenance instillations of BCG

In May 2008 I was once again clear no malignancy or CIS and had a further 3 maintenance instillations of BCG.

In total then 18 instillations of BCG.

In January 2009 there was mild Atypia but this could have been caused by the procedure itself - I was told I'd need more maintenance but this was not needed.

In October 2009 I was once again clear and no evidence of malignancy or CIS.

In May 2010 I had a small recurrence which was a G2pTa

G2 - Grade 2 cancers have cells that look more abnormal - they are called 'medium grade' or 'moderately differentiated' and may grow or spread more quickly than low grade

p - as above and

Ta - the cancer is just in the innermost layer of the bladder lining.

I had to go back in a month or so after this and was warned that "if he continues to get recurrences he may require some more invasive treatment in the future". Don't tell me that isn't chilling? Now I've re-read it it surely is but this was written by the Registrar not my Consultant this time :-)

In August 2010 I was clear and could go onto Flexible scopes.

I had a scope in December 2010 which was clear as was my urine cytology. As you may be aware in April 2011 they saw something they didn't like but in June when I had yet another operation nothing was found there at all.

I look back on this lot with amazement - I'll have to map this out somehow to make sense of it all. What I recognise now is quite what a journey I've been on so far. I hope that I continue to remain clear and that I don't get any more recurrences small as they may be :-)

Monday - Inspiration

And perspiration as we get a really hot day up in the 30s and humid too. Expecting a big storm tonight to finish that off and a fresher day tomorrow. All hell breaks loose in the household tomorrow. A goes of to Uni with Mrs. F. driving her to the station and then goes off to Edinburgh. At the same time L's boyfriend J arrives driving himself around the M25 in the morning rush hour - brave boy :-). My business partner arrives late morning when we will "do lunch" and then we are back here for a couple of hours then off to London to celebrate one of our (hope to be) partner companies getting their Queens Award for Industry - a prominent cabinet minister will be there and we will be at an interesting location overlooking the Thames with a wide view around London. More on Wednesday.

I finished off filing my medical stuff today - it looks pretty incredible all stored together in one place filling a whole Lever Arch File already. Although that does include a load of stuff that I might throw away as I get paperwork each time I go in.

I wonder what they;ll say on the letter to my GP this time?

That's Better

A much better day - I got more done this morning than the whole of last week! What an improvement. I just didn't get anywhere last week at all. I now see that! I shouldn't have wasted time doing anything last week really and I know that - like many - I just felt I should be doing something but I was probably completely counter productive!

Putting order into my illness

I have 5 years of paper, leaflets, appointments, notes made about the BCG treatments, Operations and Pre-Assessment notices and lots of other correspondence that were in a drawer just being stored ready for today when I filed them. I need to do a final chronological sort as it was getting dark outside when I finished getting the paper work into years and into order.

Such a lot has happened, there were so many dark days in those papers, so many deep dark black dog type depressions and do this reminded me of how far I've come along this particular journey. I dearly hope after last week and the clear I got there that much of this is behind me now. If I can continue to work hard on keeping well and eating properly etc then perhaps I can keep bladder cancer away and ensure it never comes back - that would be a good goal I think.

Talking about something that makes you feel alive this from Glastonbury was perhaps the performance of the weekend - it was amazing - such energy.

Actually sat with the family for 10 minutes

Had a barbecue and a few glasses of wine but that's the lot everyone has disappeared off to their respective space in the house. I've left Mrs. F. watching some detective type programme. I've watched my Grand Prix and the only thing that's on TV is Glastonbury Festival - not certain if there are enough good bands on tonight that I like to stay up and watch - they had U2 and Coldplay on Friday and Saturday. Nothing against Beyonce - but that's not quite my scene I'm afraid.

I think I might go sit outside - it's nice a cool out there and perhaps I can do something constructive whilst there.

It's a beautiful day

It's getting up in the high 20s and reaches the 30s tomorrow. It's hot as you like outside, I've finished watching the GP in Valencia and there's nothing left to do really. I've just wandered past the PC and thought I'd drop a few notes down but no one is around both A and L are at work. Mrs. F. Is vacuumming upstairs somewhere and I'm sort of home alone.

Perhaps I'll just fix up a drink and go sit outside for a while - why not?

Which reminds me

That I've had a funny old week really. I don't suppose that this time last week I could have hoped for any better news than I actually got. I mean clear for goodness sake - how good is that? I'm really made up with the news but I totally forgot how shitty I'd feel after the General Anaesthetic. I've got a tasty bruise on my hand too and I have no idea quite why the rest of hand feels so sore?

I've tried to get back to working but decided against it really after two or three miserable failures. Next week - and I mean starting on Monday I will get back to normal (or try to). I am going to restart my exercises which I was planning to do this week but thought that I'd just harm myself rather than help.

We are so close on the business front that I just want to get stuck into that. I know we can't rush this last and vital piece, which is a shame so it too has to be taken slowly and steadily. I don't want to snatch defeat from the jaws of victory and so it is all about taking things a little slowly at the moment and making sure that everything is spot on. Then it's time to see if we have a business or are just barking mad :-) If it is the latter then we have to go and think again, or move to the US and go talk to the Palo Alto guys.

What you forget is people die of this

And here is a one such story - Nick Charles of CNN - probably far better known to my American Cousins than known over here but another victim of Bladder Cancer. He only had it 2 years.

Sometimes I want to get to the point of saying - "do you realise I could have died of this?" but I don't. A lot of the time that's stored away out of mind - it's not good to dwell on such stuff apart from the occasional "There but by the grace of God go I" moment. I tend not to think of it too much but occasionally a story like this comes along and it just pulls you up a bit, enough to make you stop and think and reflect.

A lot of people thought I was going to be fine, a number weren't sure and a number (I think) thought I was going to die. Luckily for me then that I am where I am right now - I guess remission isn't the right word but Cancer Free is.

Spare a thought for the Charles family and all who have lost loved ones through this pernicious disease but also celebrate the many of us who survive through the wonders of modern medicine, the dedication of researchers, nurses and medical staff.

I perhaps need to remember that people die of this and pay a little more respect to my condition than I sometimes do. I'm a lucky guy, I'm alive, I'm healthy and I've survived Cancer in my Bladder.

Oooppss

Well it's 01:20 and I'm sat here at my computer compiling my birthday list and time has run away with me. I see that all I have on here are DVDs. There isn't much that I actually want these days. It sounds sad but I have most things I ever wanted and I have my health and my house is paid for, I have my car and things, such as they are - home comforts I suppose you'd call them and so it's only things like films and music that I'd like and enjoy. Books - well I have hundreds and hundreds and many still need to be read so adding to that burden isn't going to help.

I'd like some luxury foods but I'm dieting and beer and alcohol will only add more to my figure. It's quite strange really that I don't really "want" anything at all. I'd like some day to own a nice watch and so on but that can wait until I have sufficient disposable to do that. I have a nice watch now but not a gold or an antique one for "best" :-)

In a way, things don't much matter any more - even photography which I used to enjoy so much is no longer that interesting. I guess other things are more important :-)

I suppose I'd better get to sleep although to tell the truth I've already slept for about 2 hours during the day.

Body Shock

As described to me yesterday by my colleague. It isn't just the chemicals they pump into you, it's that your body has been invaded by plastic and metal objects, you've been attached to machines and goodness knows what they do to you once your under. I have the usual shaved thigh where they attach the grounding strap - when they cut away a piece of your bladder it's done electrically and the connection on your thigh makes the circuit. It cauterises as it goes - clever. One shaved thigh takes a bit of explaining though :-)

Then there's the stress of going in and the stress of anticipation about what they'll find. I was sure it was precancerous or very low grade beginnings of a tumour. That was answered very quickly but even so, you are probably a lot more stressed out that you think you are and you have also spent time managing that stress and managing the situation - I had music that I'd chosen and spent some time loading onto MP3 players, charging electronic gadgets, getting ready to go in and possibly stay in and so on.

The only person who is surprised that I'm not really firing on all cylinders and that dear reader is me :-) Only I don't get it and that's just typical. I suppose that's just me - I make no allowances for myself and perhaps I ought to. I barely realise how ill I must have been these past 5 years. Poorly, I'll grant you but gravely or seriously ill - is something I've tried not to think about or allow into my thought process. It's actually caught up with me a few times. A bit like now how I feel and how I am are two entirely different things.

A little better

I took my colleague's advice and gave up trying to work and had a bath and then came downstairs and watched a DVD - Gettysburg - a long one but very interesting to see that particular battle unfold and some of the characters in it.

Wimbledon was on later so watched some of that and feel a little better about things now. I'll see how I am in the morning. I do find that I feel particularly guilty for not being back at work but if I'm not actually producing anything because I can't concentrate then quite what AM I doing :-)

Had a few phone calls congratulating me on my results but a little disturbed to get a sort of half facebook message from a distant relative who has a brain tumour (probably benign). Have dropped an email over to see if I can help in any way. It's a shock, he's about my age or maybe a bit younger.

I think I'll head off to bed and get myself an early night and see if that helps things.

The Roller Coaster

It never ceases to amaze me how often I go from a high to a low in quick order. I have to remind myself that I only had an operation 3 days ago and that I should be resting instead - I've tried to get back to work and I feel pants for it.

I beat myself up because I'm "letting the side down" and yet I'm not really, it's a work ethic thing and I feel pretty bad that I'm not pulling my weight this week but a chat with my mate sets me right about that and I'm ordered to stop trying to work (basically because I'm getting nowhere and getting nothing done and frustrating the hell out of myself). He's been through similar things to me and so we agree that this is a good move and I bow to his commands.

It's pretty much a case of how much cr@ps been pushed into my body and the trauma involved, even if they didn't actually take any biopsies.

I have decided to potter about, do a bit of filing and tidy up my desk then go and have a bath and then come downstairs and watch a DVD or something resting.

Now I'm feeling tired

I do try not to overdo things but last night a friend called up and we don't see each other much these days and so I went out and had a couple of beers and a lovely long chat with him. There was a band playing in the other bar - it was a bit loud and so made conversation "interesting".

Got home gone 11 and just felt flat - and this morning I continue to feel quite low. Not about results just in myself I feel out of salts.

My cousin (in-law) in the US has a phrase about "just the occasional tumbleweed passing through" - which pretty much sums up my brain at the moment. It is sunny so I might just go and invest 20 or 30 minutes in the sun and see if that assists me, it is a bit breezy out there too so perhaps the old tumbleweed will move on out somewhere else.

Now I'm feeling happier

It's had a little time to sink in now. There's nothing there, nothing at all, I'm clear - still. That's great news and it's just fab, I'm finally getting there and finally beginning to believe that it is possible that I can continue to make this a common occurrence.

With two conflicting pieces of information I'm not certain how to call the FOCC diet but, as far as I'm concerned - I've seen an improvement in my physical and mental well-being with it and even if it helps a little in terms of helping me keep my blood pressure down and it looks to have done the same in terms of cholesterol too - then who's to say it isn't performing little miracles elsewhere?

I'm just amazed that it's only been a few weeks and I'd sort of expect a longer term effect but there you go.

Of course, I could just be a little too excited by it all and it is nothing really :-) I doubt it but there you go.

I really am feeling chipper about this - it's probably the best news I've had for a long time and to know that the summer can now be free of Hospitals and treatments is just great. Let's see what long term FOCC will do for my health.

I don't often let myself loose with a Yippeeeee - but there you go - you just got one.

What a little miracle that was - I am really liking this feeling at last.

Mrs. F. and L are happy

As they have tickets to Wimbledon tomorrow - Court One and Andy Murray is second match on. Much excitement as we've just found that out and so L is getting slightly hyper :-) It's a nice treat for her to go after her exams and they'll both be very excited - they are choosing bright clothes so I can see them on TV - they'll be a couple of rows back near the scoreboard apparently. As we didn't luck out on any of the Olympic tickets this will have to do I guess :-)

I have placed my beers in the fridge and intend to do some work in the morning and then take the afternoon off sit back and have myself a little celebration and why not watch the match at the same time?

I'm feeling OK, if still a little sore, but that should ease down in the next day or so and I've done next to nothing today to make sure I don't mess up my recovery.

I am so pleased that Mrs. F. and L will get to see Andy Murray as long as it isn't raining I guess. L deserves a day out after finishing off her exams and getting her Uni place in Cambridge.