Getting hit by a truck

Well - I haven't been ill for two years (colds, flu, not even much of a sniffle). Yesterday I got progressively more tired and listless and struggled to stay awake much and kept dropping off in my chair. I didn't eat last night and took myself off to bed.

I think that it is exhaustion - I slept for 12 hours and I still don't feel "right". I couldn't say what it is, just a general malaise.

I am pretty much convinced that it is the increase in my activity and my body not really being fit enough to cope with it. I will have a lazy day today and then see how I get on. I must eat something even though I don't feel like I want to.

Another good site to help us Bladder Cancer Warriors

Try this site which has some great pictures and a lovely "off the wall" sense of humour (or should that be humor) to cheer up and chase away those cancer blues.

http://gotbladdercancer.blogspot.com/

The journey has its ups and downs but you need to see the funny side in it as well and to keep your spirits up.

Someone asked me at work why I was always happy and that they have never seen me moody or upset or angry. The answer is easy - I'm alive! I'm getting better! I didn't think I was going to be here 2 years ago! The answer is that everything has a positive and adding that to the previous three statements makes for being happy and communicating that to everyone you meet.

Having a job that I thoroughly enjoy, people who are a joy to work with, whose idea of a deadline and pressure are far removed from my experience of what those particular words mean also makes it interesting and for me to be happy too.

My Birthday

I was out last night with some friends. Oysters and a nice Lebanese Red Wine to wash them down, a Turkish restaurant and then home. I could have done with out the Turkish Chili sauce.

A nice evening, I'm up early but not sure if I will feel able to continue to work a whole day. I managed that (and a bit more) yesterday. It was a long old day and a committee meeting in the afternoon dragged on far too long.

So after 2 years? I'm alright now and having turned the corner don't think much about BC apart from this blog and some of the times I get tired or have to have some tests, treatments or other stuff done.

I think that setting some targets to achieve has got to be the way forward now as I'd hate to get over this, do nothing and letting my guard down somehow get a recurrence. Moving on is what is needed and I fully intend to do that.

And yet

When I want to get to bed I am wide awake - it is like some crazy reverse jet lag. I know in the morning I will feel rubbish and yet now, when I should be asleep, I am wide awake.

Doh!

Fatigue

I can understand how combat soldiers coming back from battle could sleep for days. I can really feel for anyone who has chronic fatigue syndrome as I am really struggling. I have hours when I work like a demon and the times when I just can't get going. If I have to hit a deadline tat is OK. Immediately afterwards, I am wiped out, half falling asleep.

I get on the train and I am out like a light and at home I can sit in my chair and almost pass out, so sudden is the descent into sleep.

It is quite common in Chemo, Radio and Immunotherapy. I also think that it is the "general relief" after having spent close to 2 years "combating" this, I suppose you let your guard down a bit and take your foot of the gas and then the relief is this utter fatigue.

I spent most of the time, last treatments, at home and so worked around these by getting up late or cat napping or working when it suited me. Having a more 9 to 5 job really knocks it out of me.

2 Years to the day (and almost the hour!)

Since I got the first real and massively visible signs that something was far from right.

I remember thinking to myself that it had to be more than having strained myself or "done myself a mischief!"

I'd arrived at a Hotel after a 4 hour drive and went early as it was the World Cup football and as we were playing I managed to drive on almost empty roads. I had stopped and there hadn't been a problem at the roadside services.

I got into my bedroom and went to the toilet and urinated what can only be called Red Wine. It didn't stop there either and for the rest of the day I carried on and the day after - I decided enough was enough and phoned home and got a Doctor's appointment. In hindsight, walking into town and buying a pack of cigars and smoking wasn't the best idea I have ever had but it calmed things down considerably.

Of course, once I knew what it was and that it was smoking related - you can bet that I haven't touched a cigar since. Although the other day I looked at one in the pub and thought, do you know what? But I know a LOT better than that.

So two years. Amazing - it does and doesn't seem that long. I can calculate that it is though.

Like flicking a switch

I've noticed that I am having some really good days and then some very poor ones in terms of fatigue. Today - I was falling asleep at the desk and came home early. Yesterday, I was going like a train all day long and well in to the evening - a long story but had to hang around waiting to get home...

I feel wiped out today. I shall get to bed early and see what tomorrow brings.

The deed is done

I signed up for the Degree course. Whether I'll get in or not depends. If I do I'll start foundation in October towards a BA (Hons) History. I've always fancied doing this and it will give me something to work towards over the next few years.

Wat is great is that where I work are some of the galleries and museums that I will need to visit and they are all withing 15 minutes walk of my office - cool!

I see this setting a target as part of my recovery and part of working on long term things again and getting away from having to set quite short term goals and achievements. It is good to get yourself along with little victories and little steps in the progress to getting well again and whilst I can't say I am out of the woods yet, I can at least see the light above and around me. The dark days are receding quite fast and the brighter days are ahead of me, I find it hard to believe that on Tuesday I would have been at work for 3 months! Where did that go? It feels like 3 weeks!

I'm also beginning to see the results of my labour and so things like the Annual review has been published and the diaries (yes we do do diaries at this time of year - 18 month ones which run from August this year.... These mirror the Masonic season and allow forward planning into the next season too.

I am working on a couple of new things which are keeping me busy including a new brochure for us and one for a Province as well as completing the Exhibition area.

I feel really well and I am beginning to be optimistic about life again. There is always a doubt and how often do you hear that so and so recovered and then it came back again but the 2nd time it killed them? Well I don't want that to happen to me (who does?) and that little black cloud of doubt will probably always be there but, it is controllable now and I am pleased to say that the Black Dog hasn't been around for quite a while too.

What a difference a couple of months make.

Tiredness - Update

If anything, knowing about tiredness and fatigue has helped a bit this week as I have been making sure that I move around a bit more and if I am feeling tired that I actually get up from my desk and move around and have a short walk or do something active. That seems to help.

I'm not doing much else different but also having a long chat on Thursday night helped too. My Hypnotherapist friend has a way of explaining stuff that puts this into context.

Next week to look forward too and I imagine not having the prospect of having a catheter inserted in me tomorrow and being sore for the remainder of the week are also something to look forward to and make me feel a lot better.

Come on Cousin

Starts Chemo on Monday and certainly hope that it does the trick and gets things in a position where they can control and sort it out.

Not a nice thing at all. As usual, young, fit and non smoker! Actually in this particular cancer it isn't smoking related.

Positive Mental Attitude, can do approach are the best tools to get through this.

Hypno

Met up with R this evening and discussed Hypnotherapy and what it had done for me. I was surprised how much R understood about my condition and some of the intimate problems that arise when you have a disease like this.

It was a revelation as I didn't think anyone - apart from fellow sufferers knew about some of the serious brain screwing that happens with living with the "big C".

I need to go away and think about what we talked about now - seriously worrying stuff to deal with still I think.

Hot Flushes

Don't really need them with the weather like it is today and I had to go in to work with suit and tie - AGM! It was a good day, I got lots done, I received my Annual Reviews and Diaries and they look great even though I say so myself.

Getting ready for a rather special visit in a few weeks and so I am rushing around and getting hings sorted in the exhibition area.

I have also been trusted with some of the film archive which I am transferring to DVD. It is great fun still and work is brilliant. Our new fund-raising site has gone live and some other initiatives are coming on line soon too.

Despite the worst of the treatments, I actually feel a lot better than the previous two - probably because I had my mind taken off them!

A little better than I thought it was going to be

I am pleased that it wasn't anywhere near as bad as it looked it was going to be. The first 3 or 4 inch lump that fell out of me was frightening enough and the blood was bad but today it has been quite manageable. I've had quite a few bits drop out of me but not with the accompanying blood and gore thank goodness.

Even after all this time it is still so "unnatural" seeing things emerge from where they just shouldn't.....

Anyway, all in a good cause.

This afternoon I took myself on a walk. I had to pick up some badges that work had commissioned and they were local so I had a mile and a bit walk and then caught the bus home (doesn't anybody queue anymore or give up their seats - I did and I did!). Ended up in the Village Pub for a beer (as you do) and that was a nice end to the afternoon.

I shall now go downstairs, pick up a beer and watch Wimbledon.

Not Great

Possibly the goriest one I have had. Not wanting to sleep at the moment but must try - having to keep getting up and going to the toilet a lot and the results just aren't nice :-( Well I suppose they aren't meant to be. Surely the worst in terms of this I have ever had. I wouldn't be surprised if whole organs dropped out of me :-)

No really though, massive pieces dropping out and plenty of blood too - uncomfortable and I am still awake. I am going to try and get to bed soon and see if I can sleep this little lot off. It is unusual for me to be about at this time of night on the first day of treatment.

Speaking of which the treatment was delayed by an hour so that might also account for it.

Well here I go

The 3rd of the 3 treatments coming up. It is normally the one that gives me a bit of a "kick in" and one that I'm actually pleased to be getting out of the way. Once this is over, just another 3 of these and an operation and perhaps, just perhaps, I can begin to believe that it has gone and I can get on with life.

I'm sort of ready for today and as usual, I am nowhere near as organised as things have fallen into place, my routine is pretty much set up and I am not clock watching quite as much.

It will soon be time to go and get showered and ready for the treatment and get myself prepared for the bravado and kidology that the Nurse and I use to make it bearable for both of us I guess? There is definitely an attitude to be taken towards this sort of thing and that is how I have positioned it and how my friend R worked with me on the Hypnotherapy so that all these things were there to make me better. Sometimes when they are inserting things into places you don't want to know about it is difficult to remember that if they hadn't done that, you'd more than likely be dead by now. 50 or more years ago I bet things weren't so good on the outlook front and 100 years ago - well I'd very probably be dead by now!

Thank goodness I live in such times and where progress is still being made and treatments are becoming more effective and less invasive.

The Fatigue Question

I found out today that the fatigue thing is pretty common and no matter how much rest you get it doesn't go away. Well I feel relatively healthy and very much better in terms of well being and my head is pretty much straight these days. I reckon if I can get rid of the fatigue piece by the end of the year and if I get the all clear then too, I should be able to get on with my life a bit better and perhaps try and plan out some other things to do. I am keen to do this Batchelor of Arts in History and the term starts in October so maybe, just maybe, I'll go for that. Perhaps that will give me something to concentrate on and make me sort out yy time more effectively. Maybe it will help get rid of the fatigue?

It takes some time I find to work out now what has happened, what will happen and take stock of the past few years of problems for it was about 2 years ago that the very first minute traces of blood were discovered and what is really spooky is that I will be at a Lodge meeting that I missed at that time on the day that I was first presented with the Symptoms - 2nd July.

The ups and downs have been profound and I now have to deal with spending more time in detailed analysis of that as I am sure I will reflect on what I have gone through quite differently now that it has been so long since I have been clear of the disease. Most probably this time last year when I was having the 2nd lot of full treatment was in fact the time that the caner went away.

I found out today that someone else I know has Cancer and that is sad. I need to talk or write soon to help if can. The person I knew who went for tests on Thursday was a negative and was sorted out on the spot which is a great relief as was another friend a few weeks back.

Someone at work asked me why I was always happy and smiling and I said that I would have to let them know later. Only a few people know at work and whilst I don't make a thing of it - they do know that I am having some sort of treatment and a few know what it is! Not trying to be a "man of mystery" just trying to work out how to tell my colleagues why I am like I am and not making it sound like some sort of super hero stuff, man on a mission or a guilt trip (I hope it isn't that).

I still reckon it is one of the best jobs I have ever done, I really enjoy it, I get so much satisfaction from it and obviously it must reflect in the way that I carry myself at work as most people notice that I am always up and always willing to help and assist or do anything at all. I also want to make them feel good about the job they do, some of the thank you letters we get from the children, now grown up or pleased with their results etc are all the reward you could ever need I think. The team do a great job, third sector work is notoriously underpaid but ensuring my colleagues know what a great job they do is alos, I believe, part of my job too. They are great.

Very Nice Curry

It was a very nice curry indeed, plus good company and whilst we ate later than normal it wasn't too bad. There was a bit of confusion around the starter we just said give us a mixed load of starters for the 12 of us and we all got something similar - it didn't detract - just made for a good laugh and the food was very good and so it mattered not.

I have to dash off in a minute to fix someones PC (Yes I know). The trouble is it is driving them to distraction and they cannot work out what they have done. I think I know and it is a few minutes work so I can probably fix that and get back in an hour (famous last words).

I am remarkably awake considering we didn't get back until 12:30 last night!

TGIF - and Curry

Yes Friday and not a moment too soon. I brought back the old pictures to have them framed and the old videos to transfer them onto DVD so I'll have something to do on Monday and Tuesday -my last treatment of this session.

The GP wants my Blood Pressure readings and a Blood Test - luckily not right away as I just haven't got the time and I'm not certain that the current treatment is actually going to give them the sort of results they were after either so a small wait may assist.

Tonight we are mob handed - about 12 of us and we are going out for a curry which will be a nice change. I was out on business last night and grabbed a half a beer and a sandwich at the railway station and then had the journey from hell home!

Anyway, I am tired but not too bad, got off early to deliver the pictures to be framed and can now successfully log on to work from here so all is going well.

I had a review at work yesterday and so far we appear to be getting along fine and I'm doing the job they want me to do which is also very pleasing. I'm taking on more as well which is also not hurting my cause.

Well tiredness must be a side effect

Although I took more time this time to recover and so don't feel quite a tired as perhaps I could have done. I am still taking myself off to bed early to make sure that I recover as quickly as possible.

It was a good, although long day at work today and I think that I managed to catch up with my two days missing work this time. Lots more to do but I need to get a plan out of these people to sort it.

All hell will break loose soon as the annual reviews, diaries and brochures all start to happen about now. I need to agree some holiday dates with them.

Urinating for England

I wanted to make sure that all was well and made sure to drink much more liquid this week to rinse through and it seemed to work. At peak I was visiting the toilet every 30 minutes earlier. Another good reason not to have to travel by public transport the day after treatment - not that I could have done though.

Again I spent an interesting afternoon sitting down and doing my thinking work for the week. Back to work tomorrow for some interesting "discussions" around working with some colleagues. I imagine that the politics of the situation will come into play somewhere along the line - I love watching the dynamics of all this stuff. Not sure if I need it first day back though....