A Pleasant Sunday

We went to see my Friend's son christened. This is the surviving twin from the tragic death of the other one in July. I took the family to see the grave - very sad and then we went on to the Christening and a little party afterwards. It was a very nice affair and was enjoyable and another stepping stone for them. He has been told that he is now Cancer Free and they won't need to see him for another year. I think after that - he gets to be discharged - excellent, they could do with some good news.

It was a lovely autumn day, the trees are turning all sorts of great colours and leaves are dropping already. I don't suppose I was taking too much of that sort of scenery in last year.

I need to get out more often I've decided. I've used the house and the fact that I can work from home as a barrier and I need to change things around to force me to break any routines that I have gotten into.

Dreams and Demons

The dreams and the demons appear to have gone away and the Black Dog hasn't visited for quite a while either.

Work has taken a big part in my life this past few weeks and I am really getting "stuck into" getting things moving.

I still have doubts and a few worries but these are nothing like I used to have a year ago. These are more everyday things now and aren't important in the overall scheme of things.

I like to tell people that now when they complain over something trivial. A standard answer is "Well it isn't life threatening is it?" or when someone was seated incorrectly at a recent meal "Did it make the food taste strange then?" It never fails to surprise me how trivial we can all be sometimes.

I'm working out quite how to go forward balancing life and work. It is all a bit new to me and so I reckon, I just need to work at it.

Scar Wars V

Scar Wars V

Scar Wars Episode 5

(Cue Music)
In a Galaxy far, far away.
Our hero has fled from the hands of BCG and Bad Catheter

and once more finds himself trapped in the NHS Death Star.

The Bed Blockers impede the patient army in their quest to attain getitoverwith.

Meanwhile, the remains of the trashed cancer cells are hunted down and taken out in operation Och and Shaw.

Insurgents are hunted down by the BCG expeditionary forces of the NHS Trust’s coalition.

Our Hero faces his greatest challenge, can he overcome the mutating cells once and for all?

Read on if you dare......

No beds – and that on a Monday morning of all things. The waiting – of which I am quite used to wasn’t so bad as there weren’t that many to be admitted. I didn’t really get much time to go through my listening to music ritual as it would have helped me when the next bit of information hit me – that they would be talking me straight into Theatre. That is pretty nerve wracking in itself as you are walked past all the Theatres and prep rooms and straight into the recovery where people in various stages of recovery are coming around from their operations.

I am led to a cubicle to get changed and after slipping into something a little more Chic – well an operating gown and climbing onto the bed – I am check listed – having previously been consented at lunchtime by my Consultant herself. We go through the usual and my bag is tagged as am I with my ID. We go through the checklist again when they come to get me for the Operation and I am in a room with a lot of people this time. It starts with the Prep nurses, then the Anaesthetist and then another and another – this time we actually have quite a good laugh as the Anaesthetist and I have been joking about blunt Cannulas and also going off to Hawaii whilst I am under. The Cannula proves to be a good one – the best yet and I give 10 out of 10 for it as it hurts (of course) but doesn’t make me almost pass out like some have done in the past. We discuss my rather high pulse rate and I explain that whilst I like them – I don’t really find going on for Operations something that I look forward to in a stress free way.

The General Anaesthetic goes in and I get my Oxygen mask and get to breathe deeply. I feel the icy cold threads running up my arm and as the GA reaches towards my shoulder, I lose consciousness.

Coming around is easy this time, no fighting I am told and I get a nice ice cold drink of water through a straw. I don’t feel the need to pee (I have done on every other occasion) nor do I feel sore or pain in anyway. Within minutes of my recovery I am whisked off to the ward were mercifully I am given my own room. I detest being in a room of other people – that’s the trouble with Hospitals – they’re full of sick people, often much worse off than me (for which I am grateful) but I very rarely relax in these situations. So my own room is a luxury.

My consultant pops her head in and tells me that she can see nothing in the bladder, there are some pink marks which she thinks are to do with reactions to the BCG rather than anything sinister. She has taken biopsies and will see me when the results are back. She seems very chirpy and I am very happy to hear the news.

I am brought a meal which turns out to be quite a hot curry for a Hospital anyway. I am drinking jugs of water which I am going through as if there is some sort of water shortage coming. I know that if I can pee twice and that the Nurses are happy I can go home.

My wife turns up and I manage to go to the toilet and have a pee – nurse is impressed and so am I as it only hurt a little and didn’t sting as much as it might have done. I do a whole jug full – and only the tiniest traces of minor blood clots – no red urine at all – that is a massive relief. I expect to see more blood but realise that there has been no work done this time, there aren’t any areas that require it and it is only the biopsies that are causing any bleeding at all.

Shortly afterwards I produce yet another jug of pee – at this rate – I tell the nurse – I could be peeing for England at the next Olympics. They wont let me home and they say I’ll have to stay overnight – I protest weakly as they know best and I am in a room on my own so can sleep and not get disturbed or disturb others.

After two more amazing jugs full of pee – the Nurse behind the Station – which is just outside of my door – states – shame – if you had done that earlier you could have gone home. I smile to myself and resign myself to a night at the Hospital. I no longer need to pee into jugs and can go directly. As I have a private loo as well this helps as I am up and down quite a few times during the night peeing. Apparently the best way to recover from surgery in the bladder is to drink a lot and I was determined to do just that and it works.

After a great shower in the early morning – great because at the crack of sparrows the Nurse takes my readings and then removes the Cannula (thank goodness I can’t stand these things) and I can just stand in the shower and wake up and feel refreshed.

The Registrar and entourage make their rounds quite early. I am told that I can go home later and that all looks fine except that they saw a few red areas in the bladder? I let this go, this is the guy who told me about the biopsies last time and perhaps having a catheter and all that. I decide that the Registrar works on worst case scenarios (as I suppose you should), my Consultant talks from experience and hasn’t been wrong so far. She was though surprised how well I responded to my first couple of operations and she was very thorough about the grading of the Cancer because of that – I feel very safe in her care.

Breakfast arrives and with it, the Ward Sister (or whatever they call them) noticing that I am dressed and ready to go explains that they are Bed Blocking and that they will let me go about 11 a.m. I am somewhat disappointed as I could easily have gone then but the Urology ward want urology patients and not some other sort. So I sit by my bed and listen to MP3s and doze until I am called on to leave.

I call a friend and let the departure lunge people know and head off for the car park so she can pick me up. After a few minutes I realise that I have lost my bearings and am walking the wrong way so I retrace my steps and arrive outside waiting just a few moments until I am picked up and whisked off home.

I arrive home and put my feet up for the rest of the day. Drinking plenty of liquids I do indulge myself with a slightly stronger coffee than they serve at Hospital – they make coffee like my parents used to in the 60s and 70s with half milk half water – I really dislike my coffee like that.

It is too early to say whether I’ll need to go back into Hospital for an Operation. The outpatient appointment isn’t until the 1st November which leads me to believe that I will again get a further downgrading as they do tend to whisk you back in pretty quickly if you aren’t well. So working on that premise, I expect to hear that there is no more cancer, or precancerous areas in the bladder.

I am trying not to build up my hopes too much but, in reality, I am excited about the possibility of being able to have beaten this and to be in a position to be closely monitored and whilst the BCGs aren’t particularly pleasant and make most people you talk to squirm at the very thought of them, you must realise that they are giving me the opportunity to be cancer free, to live and to eventually be finished with it all.

The road ahead may be long but it just got a lot easier to live with and to navigate. The tarmac is smooth and the service stations are spaced out equally, life can fall back into a pattern and more importantly than that – I can get some control back into my life. Perhaps I may be able to draw a line under the hard part of the journey and review that and stick it in my “experience” file. A new road heading off into the west, sunshine, magnificent sunsets, new experiences and more adventures are waiting up the road for me, who knows what they will bring but, I have to be thankful that I can do any of these things as at all given the last 15 months.

Thanks for taking the journey with me so far. Are you ready for adventure? Let’s see what Scar Wars VI holds for us.

Taking a long time to repair

I was considering that I am still not right. Not as I was before the diagnosis, not as strong, not as quick and I have little stamina.

Again, it comes down to how serious it really was I suppose. I'd taken it seriously but perhaps I didn't foresee this particular result. By serious, you probably know if you have followed this that part of the strategy of fighting this was almost to ignore it, or believe it was happening to someone else. So what I am struggling to say is that I took it seriously but part of the defence mechanism I put up was not to. Still doesn't make sense does it :-) Anyway - it appears now more serious than it did then! I think perhaps I got it with that statement.

I was up a lot last night with what can only be called uncomfortable insides. My urethra aches and I'm certain, as I said yesterday, that this is like a bruise coming out or the internal bits all rearranging themselves after being straightened out by the rigid cystoscope.

The upshot is that I feel dreadfully tired today and not particularly upbeat at all. I need to go down stairs and eat something now but even after a shower I am feeling drained physically. I need to put some focus back into exercise, eating and building up my strength. Of course I know that in a month's time I'm probably going to be wiped out for another 3 weeks with the BCG treatments. Ho hum :-)

Drat, Drat & Double Drat

My appointment has come through and it isn't until 1st November - that is beyond 4 weeks.

I suppose if it is that late (and not even in the usual Hospital but elsewhere) that it isn't going to be too much of a problem and more likely a formality type appointment. The one thing that I am sure of is that I will end up with a set of three BCGs before Christmas. I think that it is OK as long as they don't start me on the course until the 12th November as I have a meeting on the 5th that I really wanted to attend. Hey Ho!

Funny - being disappointed not to go into a Hospital? I must be "losing it" somewhere :-)

At least I have a date to go in and see them and haven't had to chase this time.

Not as bad as I thought I would be

Only a little bit sore and you don't really want to know where that is. I remember this last time - it is like the bruises coming out from a wound elsewhere on your body but where this is well - how can I put it other than - the wedding tackle aches :-)

Scratching it doesn't help as it is inside - it is uncomfortable rather than painful.

Back Driving today

Well that would have been had I not spent 1 hour in a traffic jam on the M25 that is. It surprises me how much a 100 mile round trip actually took out of me today. I feel quite tired and a little sore.

I must remember to get myself an automatic car next time - having to sit in traffic in town and on the motorway really took it out of me creeping along.

Anyway, I am happy to be back driving again and getting about a bit more - I hope I am not too sore tomorrow morning.

The plot thickens

At work that is. The exciting stage is almost upon us and the business is ready to take off, new challenges are rearing their head every day and what is interesting is the speed at which the business is ready to go at.

I'm pretty much up for this - got to take it a little easy for a few more days but other than that, I can get myself really engrossed in this as it launches. I can see it taking a lot of my time in the next few months but once the back is broken on this, we can get it moving properly.

The Level of Concern

About me is touching. really it is. I went to a Lodge meeting tonight and just about everyone was asking after my health and asking how I was and what was going on.

It was really nice and it was touching that so many people are genuinely interested and feel strongly about my health.

What was very annoying was that one of our members, a Lollipop man (a person who assists school children to cross the road safely) was beaten up by a disgruntled driver - this in front of the school and the children he was helping across the road.

In this instance - for the trauma that person caused not only to our friend but to the children outside the school the culprit should be locked away for years. We know that isn't going to happen as the EU and the bleeding Liberals have decided that people like this are in fact having their civil liberties violated by being found guilty. The Lunatics have taken over the Asylum comes to mind.

I think they injected me with a little bit of right wing last week. Frankly I hope the guy gets 5 years or more and I don't care whether he is a family man and had his kids in the car. This just isn't acceptable behaviour in a civilised country and to beat up a 70 year old man in front of a load of kids is outrageous. Should we bring back stoning? Yes - I'd throw the first one!

Mmm

So if you haven't got bladder cancer anymore but you are being treated for it (to stop it returning) have you still got bladder cancer or have you got something else?

are you a cancer survivor or are you in a precancerous state?

It is all very confusing n'est pas?

What are they treating me for?

I shall have to check this out as I believe the term remission is the proper one for something that is no longer a threat or has gone away. but has the potential to come back which unfortunately this does.

Still feeling very good

I have been feeling very good about things even before visiting Hospital - goodness me, can it really be a week since I came out of there! Where does the time go?

I was trying to examine why I was quite so upbeat given that this was before I went into Hospital and before I knew that things were looking good and yet even now I don't have the bit of paper that says all is OK and I am still upbeat.

I really can't put it down to one thing. i just woke up one morning and decided to get on with it. I'd had all the problems and gone through all the traumas and it occurred to me that just getting on with it, is what I needed to do.

This is of course different to someone telling me that to my face. The last thing anyone actually needs is some smart Alec giving you the "benefit" of their advice like "Pull yourself together" "Are you cured?" (My particular favourite is that one) "Live life one day at a time" What the hell does that mean? "There are lots of people worse off than you are" - that is true but this things is hurting me not them and so on. You really need to know how to say these sorts of things to cancer patients as we have feelings too :-)

So - it is OK for me to tell myself to buck my ideas up but not you or anyone else to tell me. Once decided on a course of "what is the worst that can happen" you do have to then be aware of trampling all over everyone around you who isn't in tune with you.

But I am pleasantly surprised that I am still very upbeat about things and still not letting anything phase me. Perhaps I have the Black Dog repellent on or something?

Internet Problems - Again

A plague on you Virgin Media!

At least I am so used to it these days that I can set a small action plan in motion to get back on line. I left a Little programme running last night that polled the servers every few seconds so it probably hounded the daylights out of them. After a bit of messing around today - I have managed to sort out and get the internet and e-mails back on.

Last night was good although I had a bit of a panic attack in the car when I got squeezed in. I had to sit up in the front. Not sure what all that was about but it was quite scary. I do get a bit of claustrophobia so perhaps that or just feeling cramped with the seat belt tight around me. Don't know. I was quite breathless when I got and and was able to move again - I got into the front seat and I was fine! Strange.

A Bad Night

My stomach area was hurting badly last night. I reckon that was because I spent most of the day on my backside doing nothing! I intend not to do that today :-)

I was up and down for about an hour before things finally settled down around about 4:30. Just a little reminder - if any were needed - that perhaps I ought to be thinking a little more about my recuperation by doing some exercise and not taking what amounted to close to bed rest.

With that said - I need to get myself up to the shops now and so I should get some exercise now.

Later today I am being driven to a meeting with some friends of mine which will be good. Looking forward to getting out and perhaps even having a little celebratory falling down juice too.

Busy Sunday

Up early to watch the Grand Prix and there was motor sport on all day so I had a day being a couch potato but I did actually do a lot - I packaged up some 150 or more envelopes with loads of flyers and agendas, I e-mailed stuff out to close to 100 other people, I wrote a positioning paper for work (2 in fact) and completed a strategy mind map.

Just a typical Sunday really - so typical that I am writing this blog at 1 a.m. on Monday morning - what do I think I am doing!!

At least I get a chance to go out with some friends later on today.

Graft

Saturday has just been a case of grafting through all the rubbish on my desk and in my Office.

There really isn't an easy way around this I just have to keep at it until the pile of paper diminishes and more of my desktop comes into view.

Gradually the area around me is becoming clearer and I will at last be able to spread out a bit more - I was beginning to get very cramped for space.

I do need to stop now though as I have been sitting crooked and can feel my stomach muscles giving me some jip!

Easy to forget that I still need to take it easy.

So the weekend

What to do? I should be relaxing but I have a batch of things that need doing and so I will sit in my office and get that sorted and hopefully clear this backlog of things I have been reluctant to tackle.

I say reluctant but actually, I just couldn't be arsed to do it. I reckoned that the best thing to do was to be able to concentrate on some of these things later as well as I wouldn't have given them my best attention.

So now - all those things are in front of me and now need to be done so I''m setting down to do them and clear them out of the way.

I've decided that I need to relinquish more of the things I do outside of home and work and I am going to be quite active in getting rid of some of the jobs I do and events I organise as frankly, they eat into my time too much. It is about time someone else did them and that I stepped aside - in some cases I have been sorting these things out for 20 years or more. Time for a change.

Facing up to your demons

I got to reflecting today about one of the strange things about these past experiences. That was actually going through with some of these procedures and facing them. You know you have to and so you do them but I never thought I'd be able to.

I'm thinking of the sheer fright and stress prior to these things. It has eased up a lot since hypnotherapy and since I came to terms with it. I was just remembering the utter horror of the X-Ray - some may think that strange but it wasn't so much the X-Ray and the stuff they pump into you it was the laxatives that cleaned you out prior to that - I don't think I have ever felt so miserable and I hadn't long been out of Hospital either so it was a double blow.

Could I do it now? Sure if I had to. I'd probably whinge a bit but I know what the Consultant would say and so I'd do it.

The whole area around what you have to do is the key. These things are done to save you and cure you so you go through them and yet you'd rather not. Before all of this I hated hospitals and operations (who actually likes them?) and now I am resigned to having to go in regularly and to suffer whatever it takes to make me well again. I never thought I'd say that either but that is true.

Finally I never thought I could lie down while someone shoved a catheter into me (no local anaesthetic) and instill BCG into me. However, I have done and will need to continue to do that for many years to come. It is all about what you get used to and knowing that this is saving your life.

That in itself is enough to make you do things that you never thought you could do, go through stuff that fills you with horror and to tolerate far more than you would normally. You know that if you don't it can actually mean your life. I think the stakes are high enough to make you understand why you soon come to terms with things.

I must stop and think

Before I get quite so stressed out that people are not meeting my standards and have my outlook on life.

I would repeat this a 1000 times but you know that I would cheat and just do a cut and paste!

Today

I have sat at this damn set of computers all day now and I really should have been taking things easy!

Such is the buzz I have at the moment that I have totally forgotten that I shouldn't be working until next Tuesday at the earliest.

I am going to desert my post and go downstairs and put my feet up now like I should have done for most of the day.

No wonder people keep telling me to take it easy. the trouble is you don't realise you are over doing it until after you have over done it.

The importance of being me

Yep strange title.

I am strangely compelled to write a note about how important it is to be yourself and to not be anything other than that.

It is easy to change and to put on an act or to become embittered or aloof about having cancer or anything life threatening. Because a lot of people don't understand doesn't make them stupid or somehow of inferior intellect. You mustn't treat them like that and you need to be patient and to explain it (no matter how many times you have to do that).

It is the most important thing to those of us who suffer from such things, it "rules" and "governs" our lives and we don't understand why no one else knows that - just look at my early blogs about why no one dares mention the "C" word.

I am hoping that through the last 15 months I really was myself and I didn't shun friends or take out any anger on them or be impatient or sarcastic.

Why? Well I'd have hated to have given anyone I know a hard time. I know I upset a few people but more from being frank and honest about what was going on but I don't think I got anything other than that.

It will be good to be able to go back to answering the question "How are you?" with an honest - I'm fine.

I am feeling so much better today. I may be battered and bruised and still have trouble bending down and getting around but I feel absolutely brilliant.

Roll on the 23rd October when I can draw a line under this lot, stop the Roller Coaster and get onto one of the less wild rides for the next stage.