That makes sense

A friend suggested that this may be down to the compensation I was making for my incredibly bad leg last week. Goodness - it sounds like I'm an old crock but I feel fine apart from my back giving me jip! I guess though that's possible I walked about 4 miles with the bad leg and was favouring it and walking all sideways.

I cancelled tonight's meeting and have just taken it easy with watching a couple of DVDs I got for my birthday. I've cancelled tomorrows trip to London for the same reason. It feels a little easier right now - and I'm off to bed to get a good nights rest.

It's amazing how these odd things keep cropping up. Anyway - things could have been a lot worse - they might have found something when they checked me out a few weeks back. I need to keep a sense of perspective :-)

Not good

My back isn't right and it's making my leg buckle every now and then when I put weight on it :-( It's OK when I sit or when I stand but transition between those steady states is accomplished with ooohs and aaahs!

Discretion being the better part of valour etc I have cancelled going to tonight's Lodge meeting and tomorrow's lunch in London. I'd like to go but I know I'm just going to make my back worse if I do.

I can't imagine that this was just doing exercises as I was pretty careful to be quite gentle about it.

Oh well - take it easy I suppose and see how I get on.

Well that's unusual

I don't often get a bad back. I wonder if it was the exercises I did yesterday - I wasn't particularly vigorous with the stepper or the dumbbells but I suppose not having done any exercise for 2 weeks may be a contributory factor? It is very unusual for me to have back troubles - occasionally of course I suppose.

I've cancelled my Wednesday and Thursday outings as I'm not certain that I'll be OK for them - its a lot of up and down stuff and it is a nuisance but I need to be ready for Friday as we have a big team meeting here at the house with most of the team here. We are really quite close to the end of the road now and after this meeting which will set the direction for the last part of the business plan we can pretty much get on and complete out work.

It's taken well over a year - hardly believable - but not entirely unexpected especially as we lost half the team along the way! :-) It will be interesting to see what the summer now holds for us in terms of moving things forward.

Let's hope my back holds up - I'm being very careful sitting and getting up. Sitting more especially is quite painful and so I really hope that I can keep it rested and get rid of the problem before Friday. What a nuisance!

It's my birthday

4th July - it's the same day every year :-) Another year older and a lot happier than I was last year. I was alright and a lot lighter than I am now but I hadn't had operation No. 9 at that point and was just about scheduled for a pre-assessment. Little did I know they were going to give me the worst of all 9 operations then :-)

Today though I'm really upbeat and quietly confident that I'm going to have a good July - no hospital for me. No more treatment just an inspection in December. I just need to work on my weight and getting back to do my exercises once again. It has been a difficult week this week but I feel that 2 weeks after the Operation is a good time to restart. My diet is OK but I need to beware of snacking but this week is a pain as I have two big meals coming up and I'm out on the beer on another night too. Oh well - after that there's isn't anything for the foreseeable so I should be OK to get back to my diet and exercising.

Glad I'm still here - 5 years on and beginning to enjoy myself a bit more at last.

Depression the D Word

I was reading another blog and a fellow sufferer has just gone through one of these dark troughs of despair and is coming out of it. Stuff like "the world without me" and other subject matter was almost a precursor to a very quiet blog and the need to be cheered up but not lectured to.

These days the Black Dog doesn't come visiting me much anymore. I used to get huge swings and ups and downs and I don't tend to get that bad. It's pretty horrible and also debilitating you feel physically bad as well.

Today, perhaps the most obvious (to me) fall out is the emotional response I get to seeing anyone hurt, physically or emotionally and it doesn't even need to be real - I can feel it in fictional characters too.

I don't ever think that I was "hard as nails" in the way I was but lots of stuff bounced off me and I wouldn't be affected by it. Now I'm a blubbering wreck sometimes (when I'm on my own) but can also still be pretty effective at the logical, calm sort it out person to start with. It depends on what that was I was sorting out depends on how I feel afterwards.

Anyway - it is difficult to describe it other than more emotional than I ever used to be but additionally a lot better than I used to be too.

So depression? It was an unfortunate part of the process of getting better and one that I imagine you probably have to go through I can't imagine that many would consider it has an upside but I think to go through it you appreciate quite how debilitating it is to others and can therefore empathise with them and it can give you insights into yourself that you probably didn't have before. It's scary as hell sometimes and it's black and dire and not at all a nice place to be. It leaves you tired and weak and emotional and it stops you being you. When you get out of it and that's scariest of all (what if you don't get out of it) things look a lot better but there are lessons you can learn about yourself along the way. You just need to analyse them and to act on them.

I was considering some of the other areas that suffered too. Relationships, friends, family, work colleagues. Then there's my Claustrophobia which has really gotten bad now although I can "manage" it - I do find it still causes me trouble. Getting in a lift on Tuesday was a case in point but luckily they had people managing the process which was good. If I can avoid trains and the tube (underground/metro) then I will too. I've always had this but never had it as bad as it is now.

I find hot places / rooms difficult as I am still feeling these "hot flushes" or I just feel hotter generally. Stick me in a hot place and I really dislike it.

Sleep patterns are still all over the place but that could also be work - as I work from home you can merge work and home and also the mind is racing when doing this level of planning.

Fear - there's a constant nag that every ailment you get is cancer. Don't ask me why, it just happens like that, ouch twinge in knee (cancer), sore mouth (cancer), cough (cancer) etc. Now I'm not sure but I wouldn't be surprised if this a direct reaction to having had cancer? It does appear to me to be a bit of a strange thing that happens.

I suppose though that the bottom line is that I'm pretty much fixed now and that this roller coaster of a journey hasn't just been about finding, diagnosing, staging, removing, treatment and following up the cancer I've had. What you don't get to realise is that there is another experience that you get along the way which includes a physical and mental one that runs in parallel. Add to that the way that relationships change and who your friends really are, who go, stay and new ones and then how people treat you. Then there's your family and their reaction - some good some bad to deal with and perhaps after all of this you realise that there is far, far more to getting cancer than dealing with that on its own.

It's not surprising that every now and then you'd get a little depressed now is it?

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.