Thursday, June 30, 2011

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.

Wednesday, June 29, 2011

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.

Monday, June 27, 2011

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.

Sunday, June 26, 2011

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?

Saturday, June 25, 2011

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.


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.

Friday, June 24, 2011

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.

Thursday, June 23, 2011

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.

Tuesday, June 21, 2011

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.

Scar Wars X - The Red (or Pink) Dwarf

A long, long time ago,
In a Galaxy far, far away
Our hero Dave-Sky-Nando, Jedi Master, Cancer Survivor and all around good guy
Re-visits Darth Urologist and her evil henchmen as they attempt to discover what devilry is at work
An Empire Probe discovered, on the planet Bl'dar, that a hitherto unknown raised red spot has appeared.
Now - with an eye watering sized probe, Darth Urologist attempts re-insertion to ascertain the secret of the raised red spot.

I'd prepared for the long haul this time. I had no less than 3 MP3 players, loaded with music, batteries charged at my disposal and my trusty Kindle, loaded with books both audio and ordinary as well as some more MP3 tracks. I wasn't going to get caught out this time.

I had my early morning breakfast, now a habit of Flax Seed Oil, Cottage Cheese, ground Flax Seeds and poured that over some Weet-A-Bix and Cheerios. That together with a coffee was the last I'd have until after the Operation. I was allowed water which I continued to drink up until 11 just before I left.

I did 30 minutes of exercise on my orbital trainer and then did 5 minutes with the dumbbells which is pretty much my usual work out but this time I did this to some music by Camel which meant I didn't freak out and over do it - lesson learnt is not to exercise to AC/DC or other band of that style :-) I measured my Blood Pressure and it was OK - it was certainly the highest it's been for a while - not surprising I suppose. Next a shower and after that I continued to make sure I was hydrated. I sat around playing Solitaire and Mah Jong and made a note or two on the blog and by and large that was all I did. At 11:05 I left the house and with Camel still playing in my ears had a stroll up to the Hospital arriving at about 11:30.

Having arrived at what used to be Surgical Admissions I then spent 5 minutes looking for it's new location. It didn't matter, when I got there they said everything was on schedule for 1:30 start and that they'd let us know if different. Whatever pencil pusher decided to locate the new Surgical Admissions in a corridor and a small room in the old Private Hospital area should work out that we aren't allowed anything to eat or drink and so situating us outside of the kitchen where food was being prepared and served was cruel indeed. We have to sit together on a bunch of chairs waiting for our anaesthetist and Consultant (or Registrar). I decided that the seats in the corridor area were better as there was a slight breeze there. I had to move shortly after as a man in a wheelchair and his son turned up and it was easier for me to move than try and rearrange things. I turned on my MP3 player and was only disturbed three times - anaesthetist, Consultant and the Nurse to get me ready. Why on earth you should have to be there 2 hours early for the 2 small meetings is beyond me - I could understand the old way as it got you ready, in the zone etc. This way was like the old way and isn't great for your nerves. Each of you waiting to be called for your operation just before it happens! Mmm, I don't like it at all.

I was called in 2nd to get ready and this also corresponds with where my name is on the list - good that makes sense to me - they always say that where you are on the list doesn't count but there you go. Actually that more or less always happens I'm normally first or second to go.

I was taken to a room that I'd been in to twice before and got changed into Operating Gown and sexy DVT Stockings (I've quite a collection of these now - ideal for flying BTW). I heard a lot going on about lack of beds due to high A&E activity at the weekend.

It wasn't long, say 30 minutes, and they came and took me to theatre. They forgot my notes so had to go back and get them. I met the anaethetist and other prep person who got me ready and stuck the cannula in - this time on a different vein to the usual one towards the index finger side of my wrist.

That's all I remember - I could feel myself go out like a light and then I woke with a real start - quite a shock or jolt to see the same two guys - who told me it was all over and that I was fine. They wheeled me out to recovery - just across the way and I had some of the most wonderful tasting water yo can get. The stuff is ice cold and tastes brilliant after not having had a drink for some time. As they stuck an Oxygen Mask on me I did the first set of checks. Was there a saline drip in my hand - No. Was there a Cathether? No. Anything else - nope - all looked good and the Oxygen brought me out of my drowsiness in minutes.

Perhaps 10 minutes into the Oxygen, they came and asked whether I'd like a sandwich? Well yes please and I didn't mind what it was - I eat anything and would be grateful for whatever they had. So in pretty quick order they came with some orange juice, a cheese and tomato sandwich and some strawberry yoghurt which I carefully ate remembering from past experience trying to eat too quickly post operative isn't clever.

I then got transferred to the less serious end of the Recovery room - this was unusual but I had had this before - I'd actually been prepared in this room once before but generally they get you out to ward but again I heard the nurse stating that there were few beds and to be honest, I was the only one there who wasn't particularly groggy or connected to various pipeworks. Not nice seeing all the pipe works connected to these guys as I had that myself last time and on a couple of other occasions. The Nurse who came to attend to me was my own Princess Leah, in fact she looked more like Tilda Swinton than Carrie Fisher but with the most piercing blue eyes. Anyway enough of that already :-) She told me that as soon as I had managed to "have a pee" - that's pass water to some of you :-) I could go home. So she plied me with more of their fabulous cold water and after about 15 minutes I suggested that I could give it a go. With a little initial pain (it's stinging rather than anything else) managed to almost fill the bed bottle they gave me. Well it isn't a bottle anymore it is some sort of moulded cardboard and amazingly they drop some powder into it that solidifies the urine and just throw it away - amazing.

At this point my Consultant came and saw me. She is brilliant, I trust her and I like her straight talking a lot. She told me that once "I'd passed urine I could go home". I told her I had so she was pleased with that. Then she told me that she'd been "Unable to find anything in the bladder and all was clear". As all was indeed clear she "Wouldn't have known where to start taking biopsies and therefore decided that it wasn't necessary". So that meant that I was clear and that she wouldn't need to see me for 6 months. When they saw me in 6 months it would be for a check flexible cystoscopy. She did say to me before the Operation that these things fade and can be transitory and if so she would still cut it out to test it and take some biopsies locally. Obviously that didn't happen. She felt that there was a possibility that as the flexible scope was inserted last time it may have hit the bladder wall and that may have made the red raised area they saw.

That done, another nurse took Mrs. F's telephone number whilst I texted her mobile to come and get me. She was given unusual instructions and her work allowed her to come straight over and pick me up. She asked reception to ring recovery (which is very rarely done) and then a porter came and picked me up (they won't allow me to walk in the Hospital) and he deposited me with Mrs. F. at the reception. She had been allowed to park right outside the doors and she took me home.

So what does all this mean? I suppose we need to rationalise what we know.

  • A visual inspection about 4 or 5 weeks ago showed a red/pink tiny raised area. This was sufficiently different to raise some concerns and that it needed to be operated on and biopsied
  • This red raised area could be caused by:
  • The instrument hitting the bladder wall on entry during that inspection
  • Some sort of anomaly or growth
  • The potential result of treatment
  • I commenced FOCC about a week after this result
  • There is nothing in the bladder now - it's clear

Without the additional note offered by my Consultant about the possibility of the instrument hitting the bladder wall which provides a possible explanation and the fact that it is possible for these areas to fade, I guess it would be difficult not to discount that FOCC played some part in this? It's wonderful news for me. I was most upset that they'd found even a small area that could be a recurrence but of course now I'm really pleased that it isn't.

I now progress from 4 monthly check ups to 6 monthly also adds to the pleasure. I'm very, very pleased, it's what I'd dared to dream the result would be. Again, I'm surprisingly flat about the results in another way, perhaps because I'd prepared myself for them to find something and that they might cut me about a bit like the last time so this great news didn't make me leap up and down but it did bring a stupid smile to my face which I continue to wear when discussing my good fortune.

Here endeth Scar Wars X. I sincerely hope that there will be no Scar Wars XI - we live in hope. I am particularly pleased that it will shortly be 5 years since onset (2nd July 2006) and 4 years and 11 Months since Diagnosis (21st July 2006). 5 years is the "magic" number in terms of Cancer survival statistics - how am I going to celebrate it? I have no idea but it's good to still be here and it's good to have come through this. The Bladder Cancer Journey continues - Live Long and Prosper - as someone stuck on my Facebook Page. I'll try very hard to live up to that mantra.

Monday, June 20, 2011

So how do we call this one?

Well - that was a turn up for the books:

They took me down to Theatre and knocked me out -when I came to my Consultant said there was nothing in there - it was all clear and she "Wouldn't know where to start to take any biopsies". As such she didn't take biopsies and I came home - still a little sore of course.

She doesn't want to see me until December when I have my next scope - yes 6 months!

She had said earlier that these marks can be transient and that they can fade - if that was the case she was going to take it out and do a few biopsies around the vicinity.

The only explanation she had was that the flexi scope may have touched the bladder wall when it was inserted.

So did the flexi scope touch the bladder wall causing the red/pink mark or has the FOCC been at work and cleared away the little devil?

My goodness - what a quandary and what a great result - my little miracle. I'm obviously a bit tired and sore at the moment and so not really leaping about at this news but it's pretty impressive nonetheless.

15 Minutes to go

Just drinking my last water until the operation and getting tidied up ready to go.

I'm OK but I can feel that fluttery nervousness coming on - it will settle down once I am settled and back into my comfort zone and in a way as I go to Theatre - it tends to be a done deal and it will "be what it will be". It will probably be OK once I'm plugged into my MP3 player and walking up to the Hospital.

Ready but

Still 1 hour and 45 minutes to go. I've done my exercise, I#ve read my blood pressure which is semi amusing (well to me not a professional). The Systolic is a bit high and the Diastolic is fine - pulse is a little higher than normal at just over 100. All within acceptable limits and I hope once I've done a bit of deep breathing at the Hospital and plugged into my music that it will be as good as it can be for me.

Drinking water, answering a few emails and generally pottering about at the moment. It tends to drag waiting to go and I'm taking the opportunity to do a bit of reflecting and not too much worrying. I am also just playing with games on the PC like Tetris, Solitaire and Mah-jong - they keep my mind off things and are about all I can manage in terms of attention span.

I realised that I probably cannot do my exercises for a week after the biopsies. I did go back to it too early once and started myself bleeding. Perhaps I'll go for walks around the village to keep active and not do the strenuous stuff I've been used to doing on the cross trainer. On Saturday I actually programmed one myself on the cross trainer and nearly knackered myself doing it. On Friday I did the Mountain setting which is great except as you get towards the end the high drag on the pedals really stretches your calf muscles and you need to cool down. these days I do a series of push ups using my legs to stretch my calf muscles and also work on my upper body. I then go onto the dumbbells and do a bit more with those so my exercise routine has gone to around 40 minutes now from 30.

So here I am again - for the 11th time (if you count the time I got sent home as there we no beds). Ready to go into Hospital - I'm an old hand at this now and so I know what's coming, what's expected of me etc. I'll see if I can ask to go out today if possible but I'm prepared for an overnight stop if needed. It's a good thing that I'm tired too as I can try and get some sort of dozing done whilst waiting for the Operation itself.


All a bit rude - up at 06:30 but have had a terrible nights sleep. I thought I'd make myself tired out but appear to have stoked my head full of imagery (I watched Master and Commander and Contact on DVD last night). The dreams and nightmares were pretty bad.

I've had FOCC breakfast - it tends to fill me up nicely and just having a coffee - I have 24 minutes to finish that off and then it's water only until 11 as instructed or 11:30 as shown on the instructions. I'll defer to what I was told and stop at 11. I'll probably leave here at about 5 or 10 past and stroll up - it doesn't pay to be there early and I'm sure that just after 11:30 will be fine and I can get myself off into the zone.

After writing this I'm going to spend a short while messing around on the internet. Then I'm going to do some exercise, have a shower, pack my bag and then get myself ready to go. It's meant to be a sunny day - it's actually drizzling at the moment. Mind you, it is the start of Wimbledon so anything can happen.

Oh well - let's see how things pan out :-)

So here we are again then

It's just gone midnight - I decided to stay up late so that I'm tired and can get to sleep without giving myself a difficult time with my over active imagination. I have my alarm set early as I have to have breakfast by 7:30. I don't have to be in until 11:30. This will allow me to have breakfast and after 7:30 just to have water which I can drink right up until 11:00. I shall make sure I do that too as it helps quite a bit.

I've packing to do and I intend to do some exercises in the morning, have a shower and finish off packing so that I'm relatively busy before going in.

I feel a tiny bit apprehensive - given the last time I was in that isn't surprising but I hope they just cut out the area they saw, have a good look around and maybe take a few small biopsies and just let me get the hell out of there as soon as possible.

Of course - then there's the wait for the Out Patient appointment and the tale of the Microscope to attend to.

For now - I can already feel the back of my wrist throbbing - the cannula will no doubt do that once again. I hope that this will be the last of these but I suppose I'll have to await those results to hear what my fate will be.

I found my head wandering to some very dark places today - I perhaps shouldn't have so much time to myself sometimes. That's out of my head now and whilst it isn't going to be a day to look forward to tomorrow at least as I close this blog I know that it will all be over in less than 18 hours from now.

Sunday, June 19, 2011

Sunday - Father's Day

My three strong bottled beers I got from A & L cannot be touched until after my operation so they'll just have to sit in the fridge until I'm ready for them - a day watching Wimbledon with a handful of beers sounds good. I shall force myself to take things easy for a day or two after the procedure - I really want to get on with work as it is getting to the exciting time now. However, I know the penalty for thinking you are fitter than you are and managed, a couple of times, to set myself back in the past.

Preparations for tomorrow are mainly completed - all MP3 players, my Kindle and phone are charged up and ready to go. I need to pack my bag but that can wait - I'll have plenty of time in the morning to do that.

I just need to re-read the instructions I've been given and to remember to hydrate myself properly. Well tomorrow will come soon enough and it's a lovely day - it's Fathers Day and I intend to do very little if anything from this point onwards.

Family Celebration

Well that was a nice evening - met up with the family, Aunt and Uncle, Cousins and 2nd Cousins etc. Lovely to see them all. My Uncle looks (not surprisingly) like my Dad and so do I and my Cousin M so it was a bit spooky to see us all together. When the whole lot of us are in one room it can be pretty spooky :-)

Was a lovely do, 60th Anniversary - that's probably something not many people would see - many would be lucky to see 50 I suppose.

We very rarely have parties but there is one in August when A becomes 18 and she has very kindly invited my Uncle and Aunt and Cousins - which is very nice of her to do. I think the last party must have been my 50th and they kindly turned up then. It looks as if a good number can make it but as it is also another birthday that weekend some can't. It doesn't matter really - it will be nice to see some of them there and to repay hospitality and to let them have a knees up without having to do the organising themselves.

I'll speak to my Mum in the morning - she'll be mortified that she could not attend - I've taken plenty of photos - hopefully not to "rub it in" that she wasn't there :-)

Saturday, June 18, 2011

Well who'd believe that? Scar Wars X

So this is the 10th time I've been in for an Operation - 10! Well I thought it might be 9 but then went and checked it out.

I suppose, if you were reading this and have not had Bladder Cancer you'd wonder at having 10 Operations. Well it isn't quite as bad as you probably may think because:

  • You get used to it - by that I mean - you realise quite early on that you'll have to be in and out a fair amount even if it is just to take a biopsy like this visit is
  • It comes with the territory - there is every possibility that they'll need to do a minimum of three operations - TURBT (1), Biopsy and Re-TURBT (2) and a follow up biopsy.
  • After treatment of a high grade cancer with BCG - in the UK they follow that up with full biopsies after each stage including maintenance.

I very much doubt that it will be the last one and it's been almost a year since my last one whereas for the 4 years before that I'd had at least 2 operations a year :-(

It was nice to get the two visual flexible cystoscopies rather than the full operation - again quite how you can imagine (if you aren't a sufferer) that this is preferable may be difficult to understand. However, it's worth considering this in your deliberations:

If you were, unfortunately, to get bladder cancer there is something to consider which is that you will be monitored closely. It DOES or CAN come back - it's annoying that it does this but, the upside (believe me if you have this it is) is that it can be treated and treated well with surgery, Immunotheraphy treatment, Drugs and if worst comes to worst, they can cut out the bladder altogether and build a neo bladder or do something else - they can save you - they have the technology and so the downside to all of that is that they keep their eye on you all the time, you have scopes, operations and other things all designed to keep you well. You often hear of people's cancer coming back and getting them after they thought they'd been cured etc but the thing with Bladder Cancer is that they'd be onto this fast as you like.

It is a whole of life thing of course and that means that I'll probably be being checked right up until the end of my life. I guess that I should be reassured by that but at the same time it is a little daunting too. At least I'll be looked after.

Anyway - 10th Operation in less than 5 years. Add 3 Flexible Cystocopies and the X-Ray which was a pretty low point, then I've had 14 things done in 5 years. Add my BCG Treatments (I can't remember if that was 24 or 18 visits) plus around about 10 Out Patient Visits and you'll soon see how it all adds up. On three Occasions I've been in for more than 2 days, twice I got out in a day and the remaining 4 were 2 days. For 3 of these Operations I had 4 weeks off twice and 2 weeks off last time. All the others were meant to be one or two days recovery.

It's a fair amount of lost time if you think about it - each BCG is a day off and in reality it is 24 hours one day to the next - generally it meant I only worked a few hours on the day and day after treatment. So I reckon that I've probably had about 20 weeks off in 5 years.

So - standby for Scar Wars X

If you want to know where the other Scar Wars Blog Posts are they are here:

Scar Wars I
Scar Wars II Scar Wars II Recovery
Scar Wars III
Scar Wars IV Delayed
Scar Wars IV
Scar Wars V
Scar Wars VI
Scar Wars VII
Scar Wars VIII
Scar Wars IX

Hopefully Scar Wars X will be a non event - I could do without too many adventures!

Friday, June 17, 2011

Last Working Day

Before the operation. I'm feeling OK today and yet a little fluttery underneath. I find that the nearer I get to the event, the easier distracted I am. I'm in pretty good shape this time to go in as my blood pressure is much lower than it has ever been and I feel in good physical shape. I'm still a little heavier than I want to be but if I could work out how to drop 20 pounds by Monday - I'd be onto a good thing and wouldn't need to work again :-)

I'll see how the rest of the day goes - hopefully a little easier than yesterday. I'm now in the zone of "I just want this out of the way" until then I have my Uncle and Aunt's 60th Wedding Anniversary party to go to on Saturday. That will be a hoot :-) Shame my parents and brother and his family cannot make it - well they probably could make it - but they don't travel well. Somehow you'd have thought they would have made the effort to come along but they probably have something important to do like dusting the fireplace.

Thursday, June 16, 2011

Windows 7 and Web Cam

I have a web cam and a spare one - used before and thought - I know - I'll set up the web cam to monitor my driveway and use some software I have to do motion sense and capture and record anyone coming up my drive.

Yea right. Windows 7 supports neither of them and there are no drivers for them so they will join the great landfill along with the software and CDs etc that go with them - that's progress for you :-)

So I've ordered a new web cam which at 12Mp is pretty impressive and it has night vision and lots of other widgets on it. At least that will help defend the car when I replace the covers on the wing mirrors.

I realised today that I've been beating myself up about progress and didn't really need to as I've made a lot of progress in reality and just need to remember that. My last working day tomorrow and I intend to clean up the office a bit and make sure everything is tidy.

It could be interesting tomorrow morning - my daughter was meant to get me some Cottage Cheese today - she delayed and then went out to dinner and arrived back here a few minutes ago without it so I'll have to improvise tomorrow - I have a bit of Quark left and I spied some soft cheese so I'll use that as it's nearly similar. What a nuisance though especially as she took off with £5 cash so I'd better remember that I suppose! I can always wander down to the shops and get some later in the day I guess.

L finished school today and so that's it I suppose - the end of an era - both are finished at school both will be at University after the summer and I'll have to learn to talk to Mrs. F. again I suppose :-) That'll be interesting.

Exercise continues and blood pressure remains encouragingly low. The diet seems to be working although I overdosed on soup today :-) I shall have to think up something different to have for my dinner tomorrow!

Can't be arsed

I know it sounds bad but I really can't be arsed to do anything too much at the moment. The operation is about to hove into view and I get distracted and restless. It was funny though that I was speaking to my business partner about not having achieved much and as we talked about it we both came to realise that, in fact, I'd done a lot of work this week even though I felt I hadn't. It's a bit of a guilt trip too as he is stuck into a piece of work that only he can get on with and I need that work done before I can add my piece to it.

It is Ls last day at school today - she has just left to go and do her final Maths exam and with any luck she'll be able to get the results she needs to go to Cambridge in September/October.

It's funny how my nerves are beginning to kick in now - I thought I'd be OK about it but I suppose that it's only natural to worry a bit about things. Work distracts me but I also get then distracted from work with the odd random thought. At least I made my list of things to be done before Monday so I'm happy that is started and I can add to it if I get any of these random interrupt thoughts.

Wednesday, June 15, 2011

Blood Pressure

Still good and very pleased with that I am too. My exercise routines are getting better and I managed over 7km tonight.

Have to say I'm beginning to feel a little apprehensive - pretty normal for me - just getting to the stage of getting a little sad and a little pensive about things. I'm certain that it will all go well on Monday - I just need to get my act together over the next few days and get myself "in the zone" to go in. I suppose I didn't have my Kindle the last time I went in so that will be useful as it has music and books and an audio book in it plus I have my MP3 players (3 of them now) so I shouldn't run out of stuff to keep me distracted.

I certainly notice that I'm feeling a bit quieter and withdrawn than I normally am and I guess that is just another way of me dealing with things too.

Well - better get off to bed and see if I can get any sleep - the dreams are most bizarre at the moment - the other morning I was on a Cruise Ship that couldn't get through an area so we disembarked and folded the ship up and carried it - then unfurled it again - I have NO idea what that was all about - it seemed very realistic but even in my sleep I knew it was too ridiculous for words :-)


Well - this morning I had my first dealings with using Quark in the Budwig recipe for Flax Seed Oil and what is normally Cottage Cheese.

First, Quark costs about the same and has little or no salt or sodium in it. It looks much like any cream soft cheese and was quite difficult to get level measures and also to get it off the spoon at all as it is quite a creamy consistency. Having said that, I did struggle manfully to get it in the mixing bowl and added the flax seed oil - it mixed in pretty much as Cottage Cheese does but is much thicker. I added some milk to bring it down to a better consistency but perhaps a little too much as I made it quite runny.

It tastes really sour on its own but it was fine poured over some cereal though. It certainly doesn't have the slightly salty taste that Cottage Cheese does but it is still quite a sour taste.

I think what I might do is go between the two as I go on - there doesn't appear to be much Cottage Cheese around with reduced Sodium - although, having said that, most is pretty low by most standards, a serving providing about 10% of the daily allowance.

Quark is only sold in small tubs but is around the same price point so cost isn't an issue. I can probably do more with Cottage Cheese recipe wise but will see how I get on. For the moment, it seems to do the right things - that's the most important part.

Coffee with Flocky

A nice wander down to the local Costa Coffee and a chat with Flocky starts the day off nicely. Unfortunately, overnight, some little scroat has come up the drive way to the house and stolen the wing mirror covers off of the girl's car. It's a nuisance and it's a shame we aren't allowed to electrify our cars in the UK - I'd hate to affect the little sod's human rights! We have some bloody strange legislation from the European wet liberals that doesn't allow us to electrocute or otherwise castrate or kill trespassers and thieves. Some say I'm a little to the right of Attila the Hun when it comes to my politics :-)

So, perhaps I will set up a little webcam to sort this out in future. It's a quiet little road but occasionally we get this sort of minor irritant.

Oh well - better get on with some work I suppose :-)

Tuesday, June 14, 2011

Curry with friend

And we got around to talking about his Dad's death a few months ago and mortality and how it was about 5 years ago that I got the news etc. It wasn't a maudlin type of conversation, more a review of how life is and how easily it can be taken away. His Dad being a case in point. He died very suddenly and he wasn't ever ill or showed any signs. OK - now - it was a godsend that he died quickly, knowing that his widow was taken care of - he was worried about that as they took him away in the Ambulance. He thought about others before himself even at that trying moment.

He died from a stroke that affected his Brain Stem - that was it - we discussed the whole thing and the view that when he saw his father moments after he had died how it wasn't him, there was no life there. It's a sobering thought that all my close friends have lost their fathers and yet my dad is still alive. I am going to my Uncle and Aunt's 60th Wedding Party this weekend and like I've stated before - I go to these but my Mum and Dad and my Brother don't. It's a shame really. Whilst I can't say that I'm bosom buddies with my kid brother, I think I'd get my arse together and go see him for an anniversary or key moment. As you may recall, neither my brother or my parents turned up for my 50th birthday. I suppose I should be a bit more "hurt" than I am about that but, like the conversation I had tonight, I really can't be arsed to get upset about it anymore.

I feel good and bad about that all at the same time. My Mum would come at the drop of a hat and maybe I ought to offer to sort that out but Dad would just whinge and she wouldn't want to leave him on his own.

I HATE the idea of getting old and I hate the feeling that I am turning into my father too.

We, Mrs. F., A and L will go to the party this weekend - we will face the usual questions about how come my parents aren't there or my brother but we will be and that's important. They think I'm seriously ill. My cousin, their daughter, has had Breast Cancer and she and I are kindred spirits - we have the "life mantra" let's do it now before it's too late and all that :-) I keep trying to tell them I'm fine but I think - given the family history - and the experiences most have with the "Big C" that they look on the two of us as little miracles! :-)

Anyway - I am annoyed but understand why my parents and brother don't go to these things but you'd have thought, as it's family and very rare that they'd come along. After all, being very blunt about it, it may be the last chance my father and his brother actually get the chance to meet each other. I think it's sad but then again, I don't really see eye-to-eye with my brother and I suppose you could look at it in the same way. My only redeeming feature is that at least I go up and see my parents and make myself available to meet him - even if he doesn't want to meet me.

Families are shit sometimes aren't they?

Quiet Time - Before the Storm I bet

All gone quiet here at the moment. Most of the work is done but my business partner needs to work on something that will then free me up like a cork out of a Champagne bottle! There's lots of little things to be done at the moment and the little stuff takes up a lot of time. The other problem is that each relies on something of its predecessor and so we have bottlenecks and it isn't easy to do parallel working at this stage in the business.

It's exactly one year ago since we started - we commenced with 6 (4 founders +2) and we are now at around 5 but 2 of the original founders are not with us. that really has cost us at least 6 months if not more as we have had to fill in for those missing people and replace them too.

I'm busying myself with work on the business plan and tidying up what I've already done and hopefully we will be able to bring it together in the next two months or so. Then we will see if we are barking mad or have something that someone will want to invest it.

Things are quiet at the moment - I doubt that will last very long at all.

Monday, June 13, 2011

All be over this time next week

And I'll either be languishing in Hospital or be home. I hope the Latter.

I'm getting little bursts of not being happy about going in but nothing too bad. I never have liked Hospitals and maybe I'll count up the number of times I've been in after this trip in. It's probably 8 or 9 times I think.

It is almost getting to my record of when I was a kid - I think that was 11 times in total for my Ears, Nose Throat and goodness knows what else. It's amazing there is anything left of me to cut away :-)

All good fun - not :-)

One Week To Go

Funny how I looked at my watch and thought - this time next week. In fact it will be this time next week when I'll be climbing into my operating gown and setting myself up for a series of consent forms, BP readings, talks with Consultant, Anaesthetist and Registrar plus the Nurses. I try and keep myself to myself, I am not one of these people who natter away with small inane chitter chatter. I far prefer to get myself into a zone where I am in my own world, listening to music and then a little later just waiting for the tell tale sound of clogs and trolley when they come to get you. Invariably, I've been sitting for around 2 (or more sometimes) hours by the time that comes and in a way it is a bit of a relief as you know that you're on your way to the theatre and thereafter, its one minor pain in the hand and that's you out of it for a while.

But that's a week away :-)

Sunday, June 12, 2011

A little too much to drink

Yesterday - we carried on and had a few too many - not that I was particularly hung over you understand but the funny thing was that I got a call today and we met up again for a couple of beers at lunch time. Well, thank goodness I don't have too many occasions to drink or have large meals again until September when the season kicks off again. The odd meeting here and there which I can cope with but, luckily, not too much else.

That will allow me to continue dropping weight and keeping to my diet.

Mrs. F. has managed to find some Quark Cheese. I'll try it out later this week when I finish off the cottage cheese and I can report on what it is like. It certainly has next to no sodium or salt in it which is good.

My Aunt called to make sure that I'd be OK to go to her party next week - which I will. It's funny how people think you are at death's door when of course you're not. It was surprising how many people were quite seriously worried about me yesterday, you'd have thought I was going to have something amputated :-) It's very strange what I think is acceptable and what they do.

Saturday, June 11, 2011

Nice Surprises

My suit, the one I use for Lodge meetings fits :-) Just three weeks ago it was almost cutting me in half and I couldn't wear either of my waistcoats because they wouldn't button up. This morning, my shirt felt loose around my neck, my trousers are a snug but not uncomfortable fit and my waistcoat and jacket actually do up. Three weeks ago I couldn't do the buttons up as they hardly met. It's nice surprises like that which are the most welcome - it just shows how much weight I've lost in the past few weeks.

Yesterday Steve Kelley dropped me a note that if I could find Low Sodium Cottage Cheese, that would be even better for me especially as I am under treatment for high blood pressure (not that you can call it high now). Despite lots of research we cannot find it at all but what we did find was that Quark is readily available and that has just traces of salt and sodium. So that will go on the list in place of Cottage Cheese. Having said that, I do eat a fair bit of Cottage Cheese anyway as part of my diet and so I might just balance that or throttle it back as I'm having 6 tablespoons every morning and probably 4 at lunchtime. I'll record what happens on this as we go.

However, the good news is that I'm obviously losing weight and feeling good, blood pressure is nicely stabilised at 130 over 90 or less than that almost all the time.

A week and 2 days to go until I need my Rigid Cystoscopy, I really hope that they don't decide to pull me around as much as they did last time :-( I still look back at that as worse than having the original tumour cut out in the first place.

It's coming up to 5 years in July - 5 years and yet the trouble really happened around about now 5 years ago. I spotted a couple of bits of blood in my urine but thought it was to do with lifting about the heaviest thing I'd ever lifted up and down the stairs. Within weeks, all that was to change. Wow 5 years - I can hardly believe it has been that long. What a ride!

Friday, June 10, 2011

Exercise went on hold tonight

I was on an emergency errand. My friend's mother lives locally and I made sure that she has my number so that if she needs anything she can get me, or one of my other friends who lives locally. It was actually OK to give up my exercise as I decided to walk there and back which was quite good - I suppose it is 20 - 25 minutes walk and so I managed to get a good 40 to 50 minute walk in place of exercising on the cross trainer.

It was a simple thing to fix. the Freeview box wasn't responding so after checking the batteries in the remote and being an IT Bod myself, I just cycled the power to the box or as they say in the call centres "Turn it off and on again" and hey presto it worked so I was there all of 5 minutes. On the way home Mrs. F. drove straight past me :-) Not that I wanted a lift of course.

I'm out tomorrow to a Lodge meeting and it will have been a year since I gave up the Secretaries job. It will be nice tomorrow as I have a guest and he and I can sit back and enjoy the meeting and I don't have to do anything. It's quite pleasing in a way and we have a healthy lunch too - a salmon salad - which will be nice. But can I resist the temptation of the cheese and biscuits when they come around? If the Brie is beginning to run and the Stilton is ripe too I may have a problem. Perhaps I will forgo my desert and have a little bit of cheese - how I miss it :-) Anyway - I'm sure I don't have to live like a hermit and can treat myself once in a while!

Two Weeks On

And the FOCC addition to my diet appears to be working in small ways. I have lowered my blood pressure to normal levels which is pretty impressive. I was amazed that it was "normal" at the Hospital although it was a bit high at the GPs. The daily readings I do show a marked improvement and looking back to last year and before it is like falling off a cliff.

I can certainly feel better and circulation is markedly improved as is my skin. Because I'm also eating far more fibre and vegetables and fruit - there is also an improvement in digestion.

Yes - I'm pleased about doing this - Mrs. F. isn't wild about the cost of the Flax Seed Oil but at £9 for 2 weeks worth it isn't so bad. The Flax seeds and the Cottage Cheese aren't that expensive so it evens out. I've made myself a batch of lentil soup which is pretty wicked - I used red lentils, mushrooms, carrots, tomatoes, mint and a handful of other herbs and spices. It's got a fair old kick to it :-) I'm eating no bread, margarine, cheese, cakes, biscuits etc. I'm having plenty of fruit and salads, oily fish, hummus, cottage cheese, fish sticks, soups and the occasional jacket potato.

I'm exercising at least every other day - although I've done everyday this week so far. I'll probably not do Saturday as I am out. Around 30 minutes at a time and trying to get to 7.4kM or above (around 4 miles or more). I'll not try for my target 5 miles (8kM) for a while until I lose a bit more weight and strengthen my legs a bit. I tend to then do a series of stretches and exercises for 5 minutes afterwards with some small dumbells that allow me to stretch down.

I then go and cool down a bit and take one or two Blood Pressure readings and record those - hence I get a good view on blood pressure and pulse. This is really useful to keep the habit going. I must remember to also measure my weight, waist, chest for my weight loss chart. I forgot last week (I only do it weekly).

Whilst exercise sucks (A phrase I have no hesitation in stealing from fellow sufferer Steve Kelley Thanks Steve), it does make a difference and it's no use dieting without putting in some exercise as well. I've made it a habit and that's part of the trick to it. It is so easy not to do it but make it part of a routine and also understand the benefits (not always apparent as you struggle for breath and find yourself sweating like crazy, slightly red in the face and tired out at the end of a session). How anything that makes you like that is good for you I have no idea :-) Anyhow, you don't need many sessions to see what a difference it makes. I've probably lost one notch on my belt size this past 2 weeks as well as feeling much better.

Still sucks though :-)

Thursday, June 09, 2011

How it's described in writing

So the copy letter of my flexible cystoscopy came through today. It describes it as a "Slightly raised, red, very small area on the posterior bladder wall". Also that the urine cytology showed bacterial overgrowth. I think that means is was probably contaminated. It certainly wasn't the usual type of pot I use and I also wondered about the "wisdom" of me taking it in over a weekend?

Anyhow, yesterday's was all OK and they took the sample at the flexible cystoscopy and did cytology on that. So I think it can only have been contamination rather than a reflection of what's up with me!! :-)

So we will have to wait and see what they make of this very small area - it may be something to do with treatment but who knows - it is too early to speculate.

Wednesday, June 08, 2011

So much to do

So little time to do it in. It's really difficult there being just two of us in the business as we have to do everything. We have a new guy, a very good friend of mine who will get involved as our Commercial man - he and I go back 38 years - so we kind of trust each other :-) However, he cannot do what we need to as it is more about the internal detail of the next phase and it's in our heads not out on paper. So it's down to us.

We've worked so hard this past year especially as we went from 4 to 2 of us and these little bits and pieces of work are taking a long time - it often happens - the bulk of the work is done and just needs checking and these tiny little bits of detail take a while to do.

Not to worry - I'm feeling up for the challenge now especially as I've a few weeks to burn away before going into Hospital.

Blood Pressure

I am really pleased about my Blood Pressure readings. They are plummeting and I even managed to have a normal reading at the Hospital so things really are getting seriously better.

I've been on a part of the Budwig Diet for just under three weeks. In that time, my skin and circulation has felt better and my blood pressure appears to have come down significantly. There are other noticeable differences which, let's just say, a more fibrous diet appears to have improved too.

I'm trying to keep away from sugar, starches, high fat products, preserved meats and I'm generally eating far more fruit and veg with quite a bit of fish, lots of cottage cheese and lots of soups. I have all sorts of dried fruit and nuts too. The only thing that's taking time is to wean myself off artificial sweeteners which appear to receive a bad press. I'm using some syrup naturally pressed from fruit but after trying it in my coffee found the taste not to my liking - it is great with FOCC Flax Seed Oil and Cottage Cheese. What I have now started doing is to mix the FOCC, add some milk to make it less thick then pour it over breakfast cereal, Weetabix or Bran Flakes or Cheerios all of which just help to make it a breakfast rather than eating a gritty thick cream.

I'm really pleased at the way it is all going, I hope that today's blood test may also show good improvement. As the Tesco Advert says "Every Little Helps" too right it does.


Went better than expected. Blood pressure of 143 of 93 was the lowest ever recorded there and although heart rate was 120 I managed to deep breath it down to around 100 eventually.

ECG was fine albeit heart was racing again. The nurse knows me well and did my blood test in seconds - she is very good and knows that all I need is to take it easy and not get any sudden shocks. The Doctor was very late so I didn't leave for at least an hour after when I normally do - in normal circumstances I'm in and out in around 30 or 40 minutes. I note that I was second to be seen today but as it is quite a wait until I go in I don't think I can read much into that at all.

Home to a nice cup of coffee (which I didn't have before I went!). Had my FOCC for breakfast and quite a bit of water to make sure I could provide a urine sample on demand at the Hospital.

So we are all set for the 20th June now. My GP can now also have copies of my blood results and hopefully all will be well. Which is what the Doctor said after examining me - not heard that before. They'll make a decision based on those results? So all done, once again. Good old MP3 player as well as I was able just to relax with that - I should perhaps have taken my Kindle too as that would have helped me calm down. Being late on my way home I got caught in a shower - which wasn't meant to arrive until tomorrow :-) Mmmm

Tuesday, June 07, 2011

Hospital in the morning

At least it isn't the crack of dawn this time and so I can get up about 7:30, do some exercises and then breakfast and head off for my appointment. It's a pleasant walk there and back and if they get to see me quickly I'll be happy enough. At least I don't need to get two blood tests - I will be interested to see what the results are like though - I wonder if they are much lower than they were pre FOCC?

Once tomorrow's out of the way I'll be happy and then can just wait until the 20th hits for the operation itself.

I hate going to the Doctors

For obvious reasons in my case I hate going to the Doctors - I associate it with being ill and I hate the heat in the waiting room and the doctor's room. Why is it always so hot? I was sweating by the time I left - that is how hot it was.

So - Blood Pressure - through the roof . My readings - pretty good especially Diastolic which have come down substantially in the past few weeks. They had wanted to see me in January but they were a little concerned over some of the results in my blood test. Some bits were high - not alarmingly high. We worked out that the fasting bit I had managed to over do a fair amount and was probably de-hydrated too - considering that I probably didn't have anything from 9pm in the evening until about 11 or 12 the next day it isn't surprising but. I have a pre-assessment tomorrow so they'll be able to share data. the other reading that was high was my Triglyceride - which is interesting. As it was Christmas I am guessing I probably pigged out on some cakes and stuff around that time. I don't now of course and I'm on the FOCC first thing every morning - it will be interesting to see if things are better now given that I don't touch bread, cakes, biscuits and the like but I am ingesting Flax Oil - I'll be interested to see what happens on that.

I did early exercise this morning and measured my BP, printed and took that down to the GPs so they could see what the difference is in my home BP readings and those at the GPs. I intend to do the same tomorrow and also to make sure that I take a copy for the Hospital too.

So - there you have it - I really hate the doctors but at least I know one thing - the protocol I'm on now should help me to get my body back into some sort of balance. My diastolic blood pressure has dropped significantly in the past 2 or 3 weeks - much lower than I've ever seen it and my systolic seems to be coming down too - not as much as the diastolic but enough to convince me that continuing with FOCC and exercise and my diet which is pretty much free of anything like bread, cakes, cheese, butter or margarine, ham and processed foods is worth continuing and seeing where it takes me.

Tuesday morning

it's about 0:50 Tuesday morning - I have to go and see the Doctor in the morning but got involved in reading an interesting article and my brain is now racing - I want to get up early tomorrow and may have queered that by staying awake and probably not getting to sleep for a few hours with my head like this.

I am in a better frame of mind - I think last week's little wobble just brought back the bad thoughts around whether we were barking mad going off to set up the business. I guess that happens a lot but we really didn't need the "alternative approach" lecture last week - we know that - however it has meant we have re visited it briefly and done a stop and check - met a few very trusted people and actually feel that we probably are on the right track. It means losing another one of our passengers but hey ho - we will just have to sort that out as we go -perhaps it is for a reason.

I'm not at all sure about going to visit the Doctor tomorrow - I think it could be "interesting" but let's see - if it is just a BP check and a chat then perhaps I'll manage with that. I've plenty of other stuff to be thinking about and that's not helping settle me of course.

Oh well best be off and see if I can get some sleep.

Monday, June 06, 2011


Is exactly what I'm feeling - it's 00:15 Monday morning - I'm awake, I'm trying hard to be positive this week and yet I don't feel positive at all. I think the impact of last week's set back on the business still shook me and I spent a lot of time at the weekend trying to rationalise that.

It's a matter of stepping up once again and really getting a grip of the stuff we have left to do. The biggest disappointment has been people. In fact all along it's been people. We've suffered from a lack of commitment or, as in last week's case, through some strange behaviour. Invariably the 6 people who started last year's journey went to 4 and is now definitely 2. I think that there's a bad taste about it too as the risk is all ours, in a way we knew it would be but not to this depth. It's frightening that they've let it go when they were so enthusiastic. I think if it had been me I would have tried hard to stay involved and to do something, no matter how little it would be.

Oh well - another day tomorrow and hopefully when Tuesday and Wednesday are out of my system I feel better:

Tuesday is a review with my GP - it is very early in the morning so we can get that out of the way. Wednesday is Pre-Assessment day and again early enough that I can be home around mid morning. I am quite worried about both of them and I think it is just a combination of the way things are at the moment. I'm having one of my feeling down moments. I'll spring back, I always do.

My fear is that I may be getting like my dad and starting to get this anxiety streak. I hear myself sometimes and pull myself back into check. I feel his frustration - I too hate getting old and having had cancer it throws many worries into your head (justified or not). Many of these are not nice scenarios - you play through what-ifs and off you go into a bad place. I'm reasonably good at policing myself, I'm reasonably good at being upbeat but you must have these occasional blips - it's natural.

Talking of natural - I'm really pleased that I'm continuing to eat more fruit and veg and my FOCC in the morning and I've started to begin to feel the benefit - I must remember that I need to keep at it and not to fall back into the trap that I did after the last visit to the Hospital where they beat me up so bad that I fell out of the habit of exercising.

Saturday, June 04, 2011

Weekend - Respite

I shall leave work alone (if I can) and just try and chill out a bit :-)

Last night's end of season supper was very nice indeed and thoroughly enjoyed it. Yesterday we were sat at a Costa in the next town north of here. The windows were open, it was a lovely day and the convertibles were out, Bentley, Porche, Lexus, Ferarri, Chrysler and all sorts - it was almost continental. Surprising factoid? There are more convertibles per head in the UK than in the US. Not surprising for a country that has only the weather as a main topic of conversation.

I've been on this FOCC "diet" for over a week now - I actually noticed that I've lost a fair bit of weight already as I fitted comfortably into a shirt that was tugging around the middle two weeks ago. That's encouraging. Also still noticing that skin and circulation appear to be really good. The funny thing was at last night's supper - it must have been the largest meal I've had for a long time as I could barely eat it all - and a lot of it was salad.

End on a funny - might as well publish it here for a laugh. Flocky Bicep calls me on his way to work with a strange request. He is going to be passing the house and needs to pop in to see me. His day involves going to work then getting changed into a formal suit and driving off to a meeting and on the way back he pops in to see us at the Supper.

The reason he needs to pop in and see me? He's forgotten to pack any socks! :-) As luck would have it, there was a spare pair of dark socks I could lend him!! Strange but true..

Friday, June 03, 2011

Strange Day

So I wake at 04:30 and cannot get back to sleep - my mind is racing and eventually I give in at 5:00 and get up. I delay breakfast until 6:30 but I am wide awake and not in a "good place". Not a good place because of the meeting on Wednesday. Have I been wasting my time? Did I just spend a year of my life going nowhere?

Well - no I didn't. Not at all. But the seed of doubt was sown and I'm not strong enough (still - though I used to be) to quash this. However, my partner and I are convinced that the due diligence we have done is good - perhaps we aren't communicating it properly.

Tonight we get a chance to let our hair down a bit and have an evening of food, wine, good fun, a few beers and that's just great as it relieves the pressure and I get a weekend to reflect.

My business partner is very generous and drives us to and from the event and we partake of a few beverages :-)

The day is an up and down one - we hit every emotion and every high and low - but we still come out on top.

Next week is not great for me - but perhaps - I just ought to reflect that it could be worse, a lot worse :-)

Thursday, June 02, 2011

FOCC one week in

Well - I've stuck to the morning ritual of grinding flax seeds, mixing Flax Oil and Cottage Cheese and as time has gone on, I've added a little milk and then put that onto some breakfast cereal and that seems to work extremely well. The slightly bitter taste of the mixture compliments the cereal.

My blood pressure is all over the place - I'm not absolutely certain what is going on. I've decided that I need to keep my eye on this as I am due into see the GP on Tuesday and the then have my Pre-Assessment on Wednesday. I may resort to exercising in the morning rather than the evening. In the evening, when I exercise my blood pressure is lower by some margin.

I'm feeling fine, I certainly feel that my skin is warmer to the touch and I feel quite well in myself. I have no idea if anything else has changed in the past week but I'm going to keep on with this regime, it isn't strenuous and with the exercise and diet - I can begin to feel the benefits. Unfortunately there is a large evening meal coming up tomorrow - but after that - perhaps I can have a few months without the big meals and drinks.

After yesterday's meeting, my colleague and I are left feeling a little flat and a little deflated. In a way, it is because we got a "different story" this time from one of our advisers - different to what he told us some time ago. The trouble is we were working on that advice and now it has changed. It was a strange day and we just need a bit of time to regroup and take stock. It is always difficult when we want to do something "right" but there is a "quick and dirty" way that you might be forced to go in to cut corners to get to the same place. If we do that, we know we have to then change the business later to put it back the way it should be which makes you wonder why you'd do that :-)

Interestingly one of the comments was that we may need to move to the US to get funding? Hmmmmm. Anyway - it has knocked us sideways a bit but we just need to dust ourselves off and review where we go next.

Wednesday, June 01, 2011

Phew - Mum said there's be days like this

Strewth. That was hard going and justifiably so. We had our first review of our finances today and got royally torn apart - good job in a way as we deserved to and knew that was going to happen. The reason is simple, we have been working, just the 2 of us, flat out for close to a year now on this opportunity. Some say we are too detailed, some not detailed enough and everyone's an expert in this sort of stuff. Today though was a real test of the work we have done so far.

It's kind of scary as we were taking it all quite well and then something turned up we weren't expecting which has thrown us a bit - not in a bad way but the desired effect is that we need to stop for a short while, consider what we have just heard and then go back to the drawing board and alter a couple of our plans. It isn't as drastic as it sounds because we have structured everything to be able to be altered. It just means that we will probably add another month onto our workload.

It's at times like this that you realise just how out on a limb we are. I'm off to the Jazz Night tonight so can let that wash over me and return refreshed tomorrow.