Losing your rudder

I often sit down and wonder "what if" and today, being stuck at home with a brain that is working but a body that isn't I began to consider what on earth I am doing at the moment.

When I got bladder cancer I was pretty much at the top of my game in terms of taking what I had learnt from the industries I had worked in and then gone on to channel that into a pretty unique way of managing (not unique in terms of ways people manage but in terms of a suite of software that actually worked the way companies worked). I had years of experience, I could win work because people tend to buy people and I was setting out future plans and directions for a business that should have seen me retire having built it up to its rightful position. Unfortunately I got Bladder Cancer and then got made redundant.

I went and did something else then, totally out of character but it seemed a good idea at the time. Once I peeled away the thin layer of varnish I knew differently and then I set up the family history business which is still sitting in the back ground here and I've been working on my other start up venture in the background as well as working at the charity.

I'm as competent in my present job as I will ever need to be and having never been an operative doing the same thing year in year out, I am beginning to tire of that quite quickly. As these guys aren't dynamic, a lot of what I have as my core competencies will never be allowed to see the light of day but if they do, and a couple have, they will be someone else's idea.

I blogged about wanting or perhaps needing to get out of the Jet Stream life I was in before I had Cancer and I needed to as it would have been difficult to maintain my work rate given the issues I have had both those I knew I might have and those I actually had.

At the moment I just seem to be in the middle of nowhere. I'm not the industry leading, powerful, energy ball that I was and what I do now I know I will find will not interest me for much longer. I find 9 to 5 and commuting on the same train and same seat and seeing the same people is grinding away at me. I still enjoy the job but I can do so much better than this.

The crazy thing is, I don't know what I want and I've got a good 13 years to give to some industry or other. I don't fit into many organisations because I'm not trained to do that, I go in and fix tings, set them up properly and then walk away and into the next trouble spot. Damn, I miss that cut and thrust and then again, I think to myself that perhaps I just ought to take the pay and take things easy.

There isn't an answer to this at the moment, it is a quandary that I've had to live with since I got BC. There probably isn't a right answer. I know other people have an opinion but this job doesn't hold the responsibility or the opportunity to do much in the way of improving the organisation or myself for that matter.

Let's see what news I get on the 3rd October as that will probably help me to build some ideas.

A 2nd Day off

I cannot even begin to tell you what this fatigue is like. My head works fine but my body just will not do much more than the basics. Sure, it carries me around but don't ask me to run or jump or do anything active. I'm not out of breath but I am unbelievably tired. I have a dull headache and the feeling that I've been indoors for too long and not out in the fresh air.

The symptoms are very much those expected of post cancer fatigue. The thing is there just isn't anything left in the tank. There's fuel and air and everything else but when you put your foot on the accelerator the engine hasn't got any power.

Reading up on it, it is all about hormone imbalances, problems with things like your adrenal gland and therefore not enough adrenaline when you need it and a whole batch of things that don't mean an awful lot to me. The answer is it takes time to get back these things and to be prepared for these odd days of fatigue.

I know it happens and I know I've had them before. I guess I could fight my way past these and go and try and get to work but who am I kidding? I couldn't get to sleep last night and when I did get to sleep it felt like a very short time until the alarm went and once again I couldn't get up and about.

I am just going to have to live with it. I do curse the fact that I cannot put in long hours and keep a sustained piece of work going. Then again, perhaps I wouldn't be in this situation if I hadn't been like that in my earlier years?

Fatigue again - where did that come from?

Out of the blue, this morning, someone turned on the gravity switch and I woke from a fitful night's sleep (it has to be said) with a headache, slight dizziness and the feeling that someone had super glued my body to the bed.

I don't feel a great deal better now at lunchtime and the headache is still here and the dizziness is slight, the tinnitus which is often part of my everyday life these days has ramped up and is quite loud and I feel completely out of it. I purposefully didn't do anything yesterday as I realised last week that I ought to take Friday off and preempt any of this fatigue feeling. The driving and a few late nights were ringing bells in my head (not the tinnitus other bells).

Also this morning my appointment for the Hospital has arrived. 3rd October. Yes, that's a Saturday which is very unusual. However, it is local so I will be able to walk there easily enough. If it is good news I have to walk past two pubs (at least) to get home so that could be interesting.

I can't believe that I feel quite as rubbish as I am at the moment but there you go. It used to happen like that but hasn't for a long long time. Just a little reminder from my body not to overdo things or to remind me that I'm not out of the situation yet.

An Anniversary Missed

15th September, last Tuesday was one year to the day that I had my last BCG instillation. I am amazed that it is that long ago but it was. The next anniversary of note is in October when this humble blog turns three years old.

Things move on again and I notice that I'm gaining more confidence that perhaps this can be put behind me a bit now. It is terribly difficult not to live with this every day as there are reminders every day. Every time you meet someone you haven't seen for a while they ask you how you are. this blog, my general state of health, going to the toilet (yes you still look to see if there is blood every time), the daily tablets and other such reminders.

The other issue is still the most difficult one to live with and that is that whilst I'd like to make the most of my good fortune, no one else really realises what it actually means to be alive when you thought you might not be or perhaps felt that you'd be ill for the rest of your life.

I continue to work on how to square that problem and so far none of the solutions I've come up with are actually that palatable. I know that those around me have no real idea of what I've gone through and I've probably no real idea what they have gone through either. I'd like to go off and do something different and I'm not certain they want to do what I want to.

Straightforward simple explanation

I found this little gem online all about Bladder Cancer HERE. I wished I'd have found that one earlier on. I dared look up when they call you "in remission" as I'd really like to hear those words in a few weeks time it would be more than 2 1/2 years since they found anything cancer related inside my bladder.

I want a bit of respect

Every now and then it would be nice not to end up getting it in the neck for stuff that I haven't been involved in. I'm going to be obscure here. Imagine if you will that something happens, I have possibly heard about it but no one has spoken to me, asked my advice or asked me to do anything and then, when they are half way through a problem arises and suddenly, it's my problem? Worse than that, I get talked to as if I knew all along it was my problem and to say the least, tonight I got pretty pissed off with it.

I'm happy to help but the problem doesn't need to be fixed tonight as the delivery man who has to pick said problem up hasn't been contacted but time is running out and no one has done anything about it and now the instructions which (in my humble opinion) are simple enough to follow haven't been followed. In addition, rather than asking for help they've gone off and solicited someone else's help and that is my problem too as they haven't got back to them. despite me saying that I'll look at it in the morning things still aren't right about that either.

So, in no uncertain terms I've expressed the view that it ain't life threatening, that it can wait as DHL or UPS or FEDEX aren't exactly going to turn up at midnight if you haven't even called them with a reference number either and obviously, as I'm a bloke, that is wrong too.

It really pisses me off and it doesn't matter who it is, when the accusational tone of voice is used towards me if it isn't even a problem under my ownership or even on my radar as this particular thing isn't. I live and breathe the world of body language and tone of voice and talking to me as if I were some naughty child or misguided adolescent is hardly going to gain my unqualified assistance and help me to look favourably on working out their problem for them.

I very much doubt that a good tone has been set for the weekend but I should be getting used to no one talking to me these days or even being here. At least if they aren't here they aren't accusing me of not doing something that through some clairvoyant level I should have picked up when I was at work.

So, that's my little rant over for today let's hope no one tries talking down to me again this weekend or they may well regret that. I was in such a good mood too during the day.

A bit better frame of mind today

I wasn't greatly impressed with work and also my other colleagues on my other venture who I felt were not gracious about the lack of progress when they had in fact not made any progress either. So I am looking forward to sorting them out after I had a go last night.

Today I had a sleep in and the nice thing about that is that I MUST have been tired as I am in a much lighter mood now. I also managed to get a lot of things done this morning and al my various admin tasks are now done. I now have to do my financial stuff though and hope that I can find the back up of the file I did as my other laptop died on me!!

It seems that Steve's 2nd BCG has gone well and so there is just the one more left next week.

The weekend beckons and I am looking forward to getting a load of things sorted out especially these financial things.

One of 'those' days

Well yesterday was one of those days where my sense of humour took a bit of a pounding and even I failed to see the funny side of whatever control freaky thing they have here that means you have to change everything when it is put on your desk even if it was changed according to your wishes last time it was on your desk.

It is the worst kind of management and I very rarely did that to anyone who worked for me. I may have made one set of comments and suggestions as a peer review or actually questioned the technical or commercial content of a document but I never felt the need to fiddle around for the sake of "being the boss" or any other anally retentive reason either :-)

That is what I employed the person to do, as I often reminded them about making decisions and managing their time and projects. If I wanted to manage it myself I would have done it myself and not employed someone to do so. These days it is so easy if you don't want to make a decision you can email or text the boss who makes it for you and then you aren't to blame if it goes wrong.

It was also funny that a small presentation I prepared was remorselessly added to over the past week and became massive. When in discussion I asked how on earth did they expect me to deliver the presentation in 10 minutes, the penny clicked that the original was exactly right in terms of content and timing!!!

Anyway, that's me ranting away this morning - everything takes twice as long as it should. There's never enough time to get it right first time but there's always plenty of time to go and correct it afterwards.

I'm busy as you like today though, I have two appointments and will be home late and I am seriously contemplating taking tomorrow off to catch up on my paperwork and get away from here for a few days :-) I think I have convinced myself that I'm taking it too seriously if I'm not enjoying the work.

Steve is having his 2nd of 3 BCGs later today and as I will be meeting some colleagues for a few beers this evening I shall raise a glass of beer or similar. Steve will no doubt be lying in a darkened room taking it as easy as he can and letting the BCG do its amazing thing. Only one more after this one and hopefully a good length of time off until the next poke and peek to see how he has got on. Good luck Steve. I don't know where the thought just came from but it occurred to me that Steve is "Taking one for the Team" today so as most of the BCG brigade will know what it is like we should, as a team, see if we each can remove a little of the discomfort and share it around a bit. I have to say I felt quite a twinge just writing that last bit.

Testing my sense of humour

My boss, bless him, left a changed document on my desk that had been finalised and signed off and that I had produced, set and published but he changed it - AGAIN!!! Now it isn't unusual in our place because we are committee driven and have to be politically and legally correct in all we do. however, it is normally funny but I wasn't amused this morning as it just was so unnecessary to do it. It was changed for changes sake. As are many documents unfortunately.

Then the Welsh document arrived and we had to work on that and loads of other stuff that I'm good at but really "aren't my job" if you get my meaning.

So it was all a bit fraught and a bit wearisome today and didn't need to be.

I can't see me attending the Hospital until October now and I suppose that isn't such a bad thing. I had an interesting conversation with a chap last night as his friend has cancer and he was explaining just how tired he was and I was assuring him that this is indeed the case. I hope I reassured him and gave sound suggestions as to how he could assist his firend.

Tomorrow is Steve's second of three BCG treatments. 2/3 rds of the way through as I liked to look at these things and just one more left after that. I need to make sure, as I am out tomorrow (again) to raise my first beer to him. It is a year since my last lot of them and I am hoping that I will never need to see them again but you never know.

Well there's your problem

Apparently my appointment got missed and so I have to wait a while until my Consultant, who is just off on holiday, returns to let me know the ins and outs of the results. I've said that is OK as I am sure if it had been anything else I'd have been in at light speed like the first couple of times.

Working at home today is not going as well as it should do as the emails are coming in thick and fast and I am having a little trouble trying to concentrate on what I should be doing - minutes of my meeting!

With a bit of luck things will calm down in about an hour and I can get on and finish it off. It is a miserable day outside and I hope it cheers up a bit when I go off to give this talk later on.

High Profile Deaths

Such as that of Patrick Swayze from cancer really feel like body blows. I'm not saying that other people you know don't but so well publicised are these particular deaths and Patrick was no great age either (as if age makes it alright - it doesn't of course). Suddenly you are confronted with news of so and so's death from Cancer and the level of exposure means you rarely miss it.

You then get the standard 'cancer phrases' wheeled out "bravely borne" "courageous fight" and all that stuff.

For me, it just reminds me how lucky I am and how pleased too that I don't have to be facing my mortality right now although we all know that it could come and visit us at about anytime.

The more you look around, the more stuff can kill you or make you seriously ill without all the stuff we manage to inflict on ourselves!

Work from home

Well eventually I convinced everyone that me going into work and returning a few hours later and then having to travel again would actually mean the best part of 5 hours travel as I am due out tomorrow to give another talk this time to a Lodge in deepest Kent. Kent is a funny place it doesn't look big until you actually have to drive somewhere. If you are on a main road it isn't so bad but on some of the side roads progress can be slow.

I haven't driven down to this particular place for many years but it will be nice to go down, almost to the coast to give a talk. I feel quite harried and slightly stressed out as I have a lot of work to do of my own but also have other stuff leaking through that really isn't mine but it needs to get done. My colleague is back in Hospital I am told which isn't great news. I spoke to him on Thursday and he wasn't great but it appears that on Friday he ended up back in Hospital once again. They need to sort him out but if it is what I think it may be he will be off work for a long time. Fingers crossed they actually find out what is wrong with him.

Back in the land of the living

Got to Lincoln and had a nice day there and then off to my parents in beautiful sunny weather and we had a good day out on Friday.

Things are moving on a bit and the years are beginning to tell. Still no news from my Consultant so I will write to them and see if I can speed things up a bit.

I'm pretty tired even though I didn't do a lot but then I haven't driven the car for any great distance for quite a while (apart from going on holiday which wasn't a long journey anyway). I was close to 5 hours in the car on Thursday, 2 on Friday and 3 yesterday.

Start of a new and chaotic week here at work. Steve Kelley in the US has survived the first BCG of this session but got a delayed reaction so things started late and finished late. I had a few of those myself when nothing appeared to happen and then in very quick order things changed. Thoughts and prayers for Steve's next two treatments will be great and this Thursday and the next and that will be that batch over for him.

I'm busy as you like here. My colleague isn't well again and I can see us having to get on without him for a fair old time if it continues. That will mean adjusting my workload significantly.

Watch this space I guess.

How quickly the body/mind forgets

I saw Steve Kelley's blog this morning and he is about to get another 3 BCG treatments (1 a week for the next 3 weeks). Steve hasn't had these for 6 months and so was reviewing his notes and getting himself prepared for the treatment.

It takes a fair amount of courage to mentally prepare yourself for having these treatments and a lot of the routines I used to do were all about building yourself up for the treatment itself and being prepared for the inevitable side effects when you returned home.

Now I can look back and state what a great thing it was as I am clear. I feel well and I feel that the treatment was in no small measure responsible for this. Mind you, try telling yourself that at the time and it is often difficult to be thinking positive thoughts as the nurse inserts a catheter into you to instill the BCG.

But back to the title. Until Steve posted his blog, I really hadn't thought much about the treatments - I am certain that my mind just put that set of experiences in the "Too difficult to deal witth" section of my mind. It brings it all back to me especially the one that really pulled out every side effect in the books. They say that efficacy cannot be measured by the strength of the side effects and yet these first treatments really did a lot in terms of stripping out the old bladder lining and encouraging new non cancerous growth. I still marvel that someone ever considered that sticking BCG in your bladder may have such a profound outcome.

I am also glad that I was young and fit enough to take the side effects too.

I suppose I ought to be glad that the mind puts a lot behind you. When I do get to think back on my time with BC I do realise what I went through and can get upset for myself, more so than I ever did when I lived through all those things.

Anyway, I'm off this morning to go and give a talk about the charity and then I can head off to my parents and spend a few days with them which I am looking forward to.

Getting ready

Still no news from the Hospital and so I can only assume as it is 4 weeks this Friday that things are OK and they don't need to see me until they can fit me in.

Not sure what to do when I hear the results this time. Last time I was sort of disappointed almost but this time, well, lets see what happens this time. All Clear would be a good set of words to hear. See you in a year would be nice too.

Must get off to bed and get packed ready for tomorrow's sojourn up north...

Crazy work day

I had to get all the exhibition stand stuff out and off to loading bay, on my own and then it was Grand Lodge day so hundreds of random Masons wandering around the building whilst I was trying to finish off my presentation for tomorrow, prepare all the committee papers and then found out that some finance papers were being worked on when I needed the photocopier and then my chairman came and sat with me for about an hour of pre meeting briefing and eventually we had the committee meeting which just made more work for me!

I wasn't amused. I have just got my stuff together for tomorrow and will be heading off to Lincoln to talk to about 100 Charity Stewards and Almoners and so I need to remind myself to just be slick and to talk slowly as my presentation runs at about 20 minutes at break neck speed and 25 as it should be delivered. It is really good (it is totally different from anything they have ever done before) and it is interesting in that the research I did for this and the talk next week should really make people sit up and take notice. Our charity is in the top 1% of all charities in England and Wales! Wow. We are quite large but have a small staff ratio compared to others so some of this stuff will come as a great surprise to many. I hope that I can implant in their minds just how impressive we are in terms of the work we do.

Things appear to have settled down at the moment - not sure how a 160 mile trip up the motorway will affect me but let's see. Will be great to go and see my folks on the way home and show them I am still alive!

What a Day

I ended up having some interesting urination issues - blood in the morning a couple of times and not nice - a full on experience - yuk. Followed by a sort of mid day well you can see blood there but it was OK. Just before I went home I passed a small ferry sized clot which really turned me over and then when I got home all was OK again.

Tonight with beer to lubricate the pipes, all signs are gone which has pleased me a lot!

It was another great evening with my friends. You know where you are with your friends and you can get away with many politically incorrect things and laugh at silly stuff and know that we aren't being bad, just enjoying a night out and what today people think are insults (bunch of wet liberals that they are) is actually to do with all the things that hold friends together and keeps us being what we are after 40 years or more.

I thought it was really quite amusing that my "wedding tackle" and bladder and urinary equipment are made fun of and light of in the company of my friends. My friends CAN get away with these "low shots" and none too subtle innuendo. That is what friends do - we laugh at our problems and we make light of some of those things. One of my friends lost his father the week I was diagnosed and yet we worked our way through that and bad as I feel for not attending his funeral we can look on it now that I came out of it and I'm here. His Dad who was such a great friend of mine when I was a very young guy, taught me so much and we all know that had I have been well enough to attend I would have done. Unfortunately it was when I was bleeding all the time and on my way home from Yorkshire, stopping at every service station that the news arrived that he had died.

It is one of my regrets and yet also a big bond between us that as his father died, I was being diagnosed with something as serious as....

It sounds like a serious night but actually we just had a lot of fun and for old people, we seemed to be getting many laughs per minute in!

Whew clearing up

That was a relief. Not exactly clear but not claret either. Just a hint of what was there this morning and I'm feeling a little bit better. It does stir you up no matter if you know that it was expected and what it was.

Not a good start to the morning

A bladder full of claret and clots came flying out and the second go wasn't a lot better. That got my attention this morning. It is pretty revolting as you can probably guess but I didn't need that. Mind you it has been three weeks I suppose and that is still time for the wounds to sort themselves out.

I'm going to get ready to go to work but will see how it goes as to how long I stay there. I ought to be lying down flat I think.

No News is

Good news as they say and I still haven't heard back from the Hospital so I can only assume that the results are OK and that they need to see those worse off than I am.

I was interested that 2 years without recurrence may be considered remission. That would be nice to have I think. I can't say that I am exactly where I thought I'd be. I feel that it is all a bit of an anti climax at the moment and that I'm not arriving at some place I had thought I would.

Mind you I've been saying that for years. I am still having the most vivid dreams and they aren't exactly inspiring, they seem to picture a dreary future, caught in a dead end job and not really doing anything coming out and away from BC when I think that all I have learnt and experienced should be helping me do or be something.