A quiet Sunday

I did take it easy and only once did I get any more problems which was just a bit of debris. All appears to be clear and all appears to have settled down.

I'm still not greatly confident and somewhat hesitant going to the toilet. I will just have to take it a little easy over the next few days and make sure I don't do anything strenuous.

Off to bed now - I need some rest and to catch up on what I missed out last night with the "worry".

The calm after the storm

At least I hope it is.

During the night, it must have been about 2, I went to the toilet and there was a large clot and some blood but end of stream. This morning, well it looks clear, possibly some traces, but otherwise OK.

Today is going to be a take it easy day. So far, so good and I hope that it stays that way. I just need to rest and drink plenty of liquids and hope that whatever it was sorts itself out. I can actually feel some palpitations and a very slight soreness which I need to make sure are no more than that or else I'll be taking myself off to A&E pretty smartish.

This has happened before so I am not quite in panic mode but it did get me close yesterday.

I'll be seeing the Consultant the week after next and so I will mention it. However, I know she has always said to expect this. Perhaps I need to be a bit more patient and not to have expected to get back up to the level of exercise I was doing earlier on in the year? I certainly didn't jump on the cross trainer this morning :-)

Well there is a start - at least I got my sense of humour back - they can't take that away from you!

Sleepless Night

I don't think it is worry that is keeping me awake. I've pretty much come to terms with the fact that this is what I should expect given that they cut a number of slices out of my bladder.

Logic and common sense are taking over but of course they make your brain whir and with that keep me awake. It has gone 1 and I've been awake for a couple of hours. I will have another go at getting some sleep in a minute.

What a day!

Revenge of the Black Dog

Well I had written the last blog entry and all seemed OK.

Went to the toilet and a full stream of blood and bits came out non stop, it was horrendous and catapulted me back to the early days. There was blood everywhere and the shock of it rocked me. There were lots of bits of all sizes and dark blood not traces this time. I know that a little blood goes a long way when it is watered down but this looked just like how it had when I first got the symptoms. Ugh!

To say I was in pieces might be an understatement. It was pretty horrible and I couldn't believe it, it was as if the last 15 months hadn't happened. It took quite a while to gather myself together and go back down stairs as we were just about to watch the Rugby World Cup Final and wife and daughters were sitting there. I guess my eyes were a bit puffy and red when I got downstairs and no doubt I looked as white as a sheet - I do when I get a shock or feel ill.

C noticed straight away and I told her privately what had happened. I drunk a couple of pints of water and watched the game. So far everything is clear. I have resolved just to take things very easy for the next few days. I can't imagine that it is anything serious now, given that there has been no repetition and I have been a number of times.

How fragile my mind is though, I was in blind terror when I saw this again. I can't even begin to explain to you what it looks like or feels like.

The Black Dog shook me about and even now I catch myself hesitating to go to the toilet and feel my heart beating a little faster than it should and the tears are subsiding but that really wasn't a great couple of hours to live through.

Unfortunately your brain jumps to conclusions, if it had continued, how long do I wait before taking myself down to A&E etc.

I am off to bed now - I hope I can sleep. Not surprisingly I will not be exercising tomorrow or for a few days as I take things easy. I'll talk to the consultant, my guess is that it isn't particularly unusual and lets face it - I had this sort of thing (on a very much smaller scale than this) before. Maybe they took larger biopsies to be absolutely sure?

Whatever, it brought me back to earth with one hell of a bump and I haven't been this upset for perhaps a year or more. I'm obviously not as mentally strong as I thought I was, I must be aware of that going forward. I still feel a little tearful but nowhere near as bad at the moment. I can feel the slight sting of the blood still but it isn't painful.

Well, lets see how I fare overnight. I really wasn't expecting this sort of day or the shock of that. Take it easy, plenty of drinking and perhaps I can get back on course.

And another

After a few more clears - another one.

I don't think anything to worry about particularly as this has happened before. It just turns you over seeing the sort of thing tat used to be frequent and concerning - again.

Taking it as easy as I can at the moment to make sure that I don't aggravate it.

Spoke too soon

Another scab came flying out with associated debris and blood. It is weird and and disturbing all at the same time. Again, it sort of shook me for a few seconds but then the stream went back to normal and so all is OK. Drinking a lot of fluid today and taking it easy.

I am up to 20 minutes exercise a day - could it be that? I doubt it, just nature taking its course. If I was bleeding then I'd definitely stop doing anything. That happened last year and I took things easy for a day or two and was fine.

Anyway - it is the weekend and I don't feel ill or anything - it is just something to monitor I suppose.

Well that brought me back to earth with a shock

I had two "OMG" moments last night (OMG Oh My God!!)

I went to the toilet and it was strange but I suddenly felt that something had happened and I looked down and there was a bit of debris in the pan and then a small trickle of blood diluted.

Now I "should" know what this is - how many times have I been in Hospital? But the brain doesn't remember that first off does it? Because of the association with what blood actually meant prior to diagnosis - your brain goes there. Quite how it made the leap to think that I could possibly have tumours in my bladder where 18 days earlier all was clear is not certain.

I rationalised this afterwards. The next time I went was horrible as three huge chunks of debris (probably scabs) came out along with lots of little bits and again a diluted rusty coloured urine. This is , believe me, enough to make you recoil in horror.

Of course these are just the scabs from the biopsies coming away and so they are only signs of the bladder wall healing itself. I imagine my bladder has probably had enough of being cut, scraped and generally subjected to pretty awful chemical attacks - bless it!

So it was quite a relief, last night and this morning to have no debris or any colouration in my urine.

What a relief even though I know what this should be.

Too Young to Die

That's a strange thing to say. You hear it a lot. I often want to ask what is the right age then?

English is a peculiar language.

Outlook

I'm still really positive about everything and still feeling on top of it. I need to get a bit more structure back in to every day life and I need to work on work / life balance as I haven't got that right yet. I am actually taking time out to do more things and get out more. I'm off to London to meet some old friends tonight and that combined with a meeting just before that will allow me to get a bit of business done before having a great time out with my mates.

Life gets back to normal but it takes a while to get back into it that's all.

Exercise

Back up to 20 minutes a day now and that stretched my muscles around my stomach a bit. I can feel everything beginning to get tightened up already which is great. It is amazing how little it takes to get you feeling better.

Now to get my diet under control and I can start to improve on this.

I'm reckoning that I can be somewhere around my fighting weight by Christmas if I lose my weight gradually. I must have lost a few kilos already this past 2 weeks. I'm sure I'll have to have a set of treatments before then as well. They may break some of the momentum for me but I hope not too much.

The Ecess of Youth

Well not quite youth but I did have a real blow out meal this evening

Cream os Asparagus soup, Duck in a Cherry sauce (OK boiled potatoes and veg) but then a rather innocent looking pastry but afterwards followed by cheeses that have enough fat in them to turn your arteries into rock!

That is it for a few weeks - I have another one of these meals in a few weeks. However, I hope to have worked off this lot of excess by then!

It is all one big Merry go Round - you do a lot of good things for a few weeks and go and wipe it all out with a massive meal :-) I'm sure it isn't really like that but there needs to be some balance in all of this. I'm just not sure how you balance enjoying yourself with the other need of making sure you are living healthily.

Balance is the answer. Just what is the balance though?

Back to exercising

I felt confident enough today to get back onto the cross trainer and give it 10 minutes on a steady programme. It was just enough to get me back to a regime of exercise and to support proper eating.

I haven't started to go back to doing all of the measurements yet as today is just about the last day I am out and eating a big dinner - 4 courses!! So I thought, perhaps it is better that I start taking measurements of progress next week when I am clear of the excesses of today.

I've gone back to being careful with what I eat, I've not gone overboard this time and I am not going to be doing more than a weekly check as it just doesn't make sense to get paranoid about a daily fluctuation. I am again cutting down on bread intake and having a lot of soup which is made at weekends and used up during the week. I am also making sure I get a proper balance and as my GP told me to ensure that I lose weight gradually not in huge drops.

I feel quite good considering the layoff I've had from exercising. I hope that continues.

Amusing Stories out of Sad ones

At the weekend we went to the Christening of a surviving twin and I took the family to the grave side - very sad.

But it was really a double celebration as besides the Christening one of their family were celebrating their 90th birthday and were with a group of elderly men and women. They asked to see the grave and one of the parents, quite bravely I think said to this little party, "This way, it is a short cut to the grave yard" at which point one of the octagenerians said "That's the last thing I want to hear at my age".

Well I thought it was funny but I do have a somewhat warped sense of humour.

You can read into things what you want

But here was a very strange thing. I got hold of some Orange Advocacy wrist bands which have Bladder Cancer Awareness on them. Well I try and wear mine occasionally - at one time I wore it quite a lot. Well it broke yesterday and I threw it in the bin.

I gave all the rest away so I don't have one now. Perhaps that will be a good ting and I won't remind myself or perhaps I don't need to wear a badge anymore. Or perhaps, I just read to much into these things and it broke because it was time for it to break :-)

Give me a good conspiracy theory any day - I love them.

Still uncomfortable

It has been two weeks since the op and I am still uncomfortable. I don't remember being this bad for this long last time. Perhaps they pulled me about a lot more to make doubly sure?

I suppose I ought to start blaming my age as well :-) Well I am 50. When I was a kid that was well - almost like dinosaur stuff. Of course now I am here it is of course a wonder quite where all those 50 years went to!

Why do simple things still annoy me?

I find some things really annoy me. How about the News. Yesterday, nothing else happened in the world apart from England won the rugby against France. There was obviously so little news of interest that our newspapers and TV screens were crowded out with this world shattering event.

Given that only about 25% of the world even know what Rugby is anyway, it just seemed utterly crazy that this merited front page news. Somewhere we must have lost our way if the talk of the day is about a sport, or some people of notoriety (I don't use the word celebrity as that surely is a person who is celebrated), and some Minor B list actors all trying to dance can also grab this morning's breakfast time news.

Dumbing down I can understand but why has the BBC News turned into Hello Magazine?

Of course, maybe it is just me?

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 :-)