Post-Cancer Fatigue

Is what it is called. I need to get this sorted out I really do. I cannot believe how much I am struggling just from the short (2 3/4 hour each way) drive to and from my parents. then I realised I haven't driven my indulgence for 2 or more months!!

Poor old car - must have thought it was its birthday!

Things to do

Tomorrow I need a clear the air meeting and to set out some sort of timetable to take time off from work. I am getting too uptight about work and all the other things going on and I don't need to be. So much is going on in the next two months and the next three weeks are chaotic.

I must have let the brake off as suddenly my diary is full of things to do and meetings to attend and in between work and study need some time but for someone who makes a living by being organised - my diary and everything is in disarray. A lot is to do with the obvious thing that I don't actually have the capacity to do this, I'm not fit enough and I still get huge fatigue issues. Whether it is mental (not being able to actually do anything because the brain isn't working) or physical must be tackled and trying to drive myself through it isn't working at all.

I have time available to take off as leave and I may as well use that now and get the rest I need. If I can work out a schedule I will be half way there I think.

Off for the weekend

It will be nice to get away and spend some time with my folks. A is off to see a University half way across the country and so going half way there is useful as well as they wont have to drive for more than a further couple of hours.

I think I just need to chill out a bit this weekend. There are lots of things going on all at the same time next week and I need to be in control to manage them.

Fed Up

I'm fed up of being not quite right all the time. I'm fed up of not having enough energy at the end of the week and sometimes even earlier in the week.

I'm fed up with a whole load of things at the moment and I really couldn't tell you why that should be. Nothing "feels" right and work is great but there is something missing, the course is great and I am enjoying it but again, I cannot quite put my finger on what is wrong.

A weekend away might improve things?

Missed my Tutorial

I met up with someone yesterday and it ended up as a bit of an afternoon distraction. Probably the thing I shouldn't have done was to see an old friend and invite him to join us for a beer because he was meeting a few other friends and it went on from there!

I wasn't late home but even so there was no way I was going to get to my tutorial.

Working at home today - this is the second time this has happened this past few months!

O For Goodness Sake

Maybe we aren't going or maybe we are. This bloody dithering is a real pain in the backside. What the hell use is it making all these plans to be somewhere and then at the 11th hour (again) fannying around and changing them.

As most people who know me (and frankly this lot should know better as they live under the same roof as me) fully understand I don't do dithering and last minute changes in plan as it normally ends up in some almighty screw up that is beyond my control and you certainly don't want to get on the wrong side of me if you've wrecked my plans or put me out. Even I wouldn't want to work for me!

Just sort yourself out people and tell me what is going on. How many times have they done this to me this year? It's rhetoric don't answer me...

I really don't need to be angry this late at night either that is my sleep shot for a couple of hours no doubt.

Off to my parents for the weekend

A wants to go and see a University half way up the country. We might as well stop off half way and I have't seen my folks for about a year so better get along and see them I guess.

The trouble is it will be Friday night and we need to get around the dreaded London ring orad the M25 or as we like to call it the car park! So hopefully we will all get back on time so we can and sit in the queue earlier :-)

I hope my leg manages to keep together - I have been cramping up all today and most of last night too. Oh well let's see what we can do.

Mad as a Fish

Catchy title, no where near reality..

Great friend asks me tonight - so - if all is clear - what are you going to do with the blog next year?

Gulp - blimey what am I going to do? It can't be My Bladder Cancer Journey for surely that will have passed into "My Bladder Cancer Recovery"? What will I need to do next?

I fancy a comedy blog but full of the day to day wit and banter from the nonsense you get at work and on the journey into and out of town...

I hadn't even contemplated that this blog should end but I suppose if it adds no value - other than "life goes on" to fellow sufferers it will just need to end with that as the last episode and move onto the next chapter in life.

How I look forward to working towards my Degree, my work in the Charitable sector and how I'd love to get into the traditional life of the City of London. Maybe that would be a worthwhile enterprise but let's not jump the gun just yet.

Move over Plaisters Hall - Hello Guildhall

I was invited out by someone who has held a watching brief over me these past couple of years and one of the nicest people you will ever meet to go to the Guildhall for a meeting and a meal afterwards.

700 or more years of history right before your eyes as we were in the Crypt of the Guildhall. It is a fantastic place to go and we had the most amazing meal and wines followed by a rather nice Port before coming home.

It is such a pleasure to get an invite to one of these splendid historic meetings.

Needless to say I am really quite buoyed up from the experience, I met some really nice people and a celebrity who really was a very nice person indeed as well as some very old friends.

I have a feeling that the meeting in December I enjoyed so much last year may be when I am in Hospital which WILL be a big disappointment as it is held in rooms re-built just after the Great Fire of London...

The City of London has some really good stuff going for it if you are a Historian :-)

I believe I will pay for this later this week..... Out again tomorrow!

Monday - Busy

I am looking forward to tomorrow as I will get to go to the Guildhall for the first time. I am looking forward to it immensely and will no doubt be suitably tired as a result.

I completed the first part of my Arts Foundation today - I am running a week ahead of schedule so that I can make up for when I have to go into Hospital. I have to say that I am really charged up about it. The first module has been about Cleopatra and this next one which I am not looking forward to so much is Doctor Faustus by Christopher Marlowe. The course builds right across the arts and not just History so a bit of English Lit will be difficult for me but interesting nonetheless.

Now to go and get my stuff ready for the morning. I have an interesting week in front of me as I need to try and balance all my meetings and activities with the problem that I have just realised that I have to find 2 weeks to take off between now and December as paid holiday (vacation). Oh dear, the only time any of us have is half term - although not A she doesn't get time off until Christmas. I have 3 meetings at half term so I am stuck, C and L have to have that week off but I understand are going out on 2 of those days as well.

It seems to be the case these days that we hardly ever get to do anything all 4 of us. This weekend it looks as if we will get away to see my Mum and Dad. It will have been a year I think since I last saw them and possibly longer for the girls. Even then A and C are off to view a potential University on the Saturday but at least we will get some sort of visit with them. I hope that it isn't too long in between.

Distraction

I don't think there is a day goes by where I don't think about what I had and where I still go to the toilet and hold my breath in case there are the tell tale signs reappearing. I am constantly considering how I feel and I am constantly reminded that I have had treatment as I cannot find the right words to say. That is a big problem as I do a lot of face to face meetings and searching for the right word is terrible. I know that it will go away in about a month or so but it is really disconcerting.

There can be little more worrying than it coming back or indeed taking on some more sinister complications but it is good to know that I am being regularly monitored and that this next operation will (hopefully) be my last.

Day to day the fatigue and the memory and concentration problems are the constant companions of the disease or rather its aftermath. I'd rather have them and be Cancer free of course. You tend to forget that.

Trying to distract myself or work myself to a standstill kind of works but I'm not certain that working harder rather than smarter is a good long term solution. I turned another phase this week and beat the anger of dealing with a couple of jobsworths and perhaps I can move on a bit now and get past the fatigue and the memory bit.

The trouble is it is such a slow process getting back to normal. Also the play acting that you are alright is OK but when you get back after having been out at work all day and then out in the evening for a meeting and a meal soon catches up with you. Just annoying that the day they say you are clear isn't actually the day you are completely cured and back to the way you used to be :-)

The Buzz

I still have it from Thursday and how interesting that my daughter A is also studying Art History at the moment. I get a run at Cezanne in a few weeks and I am really looking forward to learning a bit more about that subject.

Health wise - I'm hoping that the buzz is beating the blues and the fatigue. I think that it probably is. I just need to chill out a bit more.

I did say that I'd pay for it

There was a retirement do at the office and quite a nice party - one of the funniest speeches I have ever heard too. I said to a few last night - I'll pay for this in the morning as I have again had quite a busy week and sure enough I dragged myself out of bed at about 11 this morning.

Another busy week coming up too. I am out Monday , Tuesday and Thursday evenings. I think I shall keep the other evenings free so I can study and just get a break.

I can get a real run at the course work this weekend, I hope, and then starting next week I will be able to keep on top of it. There is a LOT to get through and each week we look at a different person and their "reputation" it is fascinating and already I am drawing parallels about this with my work as we have a reputation that we didn't build and it needs to be re-imaged to what the reality is. This is one of the interesting things about the work we are doing as there is a direct relationship between what I am learning and what is going on - there sure are some interesting coincidences in the world!

And so it transpired that on the Thursday

He did OK. He didn't rip any-one's head off, he didn't call the obstropolous jumped up so and so what he thought about them - in fact he went on a charm offensive. Keep your friends close but keep your enemies closer.

Then after a full days work went to the tutorial which was inspirational and I feel lifted, really up for my course now. Some nice people on the course too. Yep, roll on my Humanities Foundation course.

I am surprised how little it has taken to get me diametrically of different attitude to 24 hours ago.

Such is the swing and ebb and flow of the exit from this disease. Even better note in one direction is my friend of heart attack fame had his surgery today and is due home tomorrow so that is great news.

Worse news on another front a friend who has had a recurrence is under some serious chemo at the moment - I wait to hear how he has got on.

Tomorrow should be interesting

I think I will go in but I am feeling a little raw edged still. Frayed nerves or not - I am going to go in and then I have my first tutorial tomorrow evening so I am going to catch a bus to the College and see how I get on. It is also quite near to where some of my friends are meeting and so I might pop in to see them afterwards.

Like all these things - I suppose I ought to see how I am in the morning - well in 5 hours time I suppose.

Anger

That is what it is, I have this utter burning anger and it isn't for much of a reason it is just how screwy your head gets when you are tired and the fatigue kicks in. You can't really explain it other than just being mentally and physically tired and it doesn't matter if you sleep or relax it really doesn't get any better. It is unpredictable and gives you a paranoia about how everyone is getting at you.

It is strange but this week it feels like everyone is on my case. They probably aren't but work, home and even my inanimate objects are having a go at me :-)

Anyway, I will see how I feel tomorrow. I'm sort of in two minds quite what to do. I think I'd like to take the rest of the week off to repair my head - I will think about that tonight - I don't fancy going to work and having a go at anyone or biting some poor sods head off!

Decided on a short break from it

I have worked my backside off for a couple of weeks and had to react to last minute changes and despite all of these I have achieved the goals but at what cost. This seat of their pants stuff is downright dangerous. I mean how can a document be approved and after 19 versions (yes 19) go to the printers only to be recalled twice more for changes that is just someone changing it for changing its sake.

I know that the office is a bit of a throwback to the mid 20th century but sometimes it gets on your wick.

So I need to just walk away form it a bit. I haven't planned that out yet but I have some leave due and after all it is only a job. I really like it but the minutiae and the unbelievable pickiness sometimes beggars belief. Honestly guys - life is toooooo short for that sort of thing especially if you are running about 10 things at once. It ain't easy.

Dazed & Confused

A pretty damn good track from Led Zep but how I actually feel. Good friend has just had a confirmed Heart Attack - he has been transferred to the top UK Heart Hospital. I need to sort stuff out and suddenly, I am having "work trouble". What I mean is that I now need some serious recognition and respect and I am not getting it. I feel "used" at the moment and I don't like it - which signifies that I MUST be getting better if I am beginning not to be "nice" to everyone.

I think that a short rest period or period of reflection may be called for....

Not certain but I need to walk away or distance myself from it. Today I felt I was being treated like a "member of staff" and I ain't that and I'm far more than the sum of my title so perhaps I need to take myself less seriously for a short while. I need to sleep on that overnight. I may need a short period of reflection I think before I get back into what I used to be.

I hope the above isn't obtuse - what I mean is that I felt I was being undervalued and not taken seriously or just treated like a jobsworth and actually that is so far from what I am that it hurt me to think that someone may have thought that.

Negotiations

I'm thinking of working out a schedule as I am getting this constant tiredness at the end of the week - I mean it isn't surprising as I am sitting here at 11 at night and still working and will get up at 5:30 in the morning!!

However, I need to separate myself from the job a bit I am quite involved but I also need some time to fix this sporadic way of working that is going on and the limits of my physical ability to achieve as much as I do. On top of that, study has just started and I'd like to be flexible about time to do that as well. So it seems the best idea is to work around how this can best be achieved.

I am getting so many job opportunities through at the moment which is very surprising. There is a lot of work for an old experienced, wrinkled and battle scarred program manager. Want to go back Dave? Sometimes the money looks great but not certain about the ethics of it all.

Two of us getting a bit morbid

I got a call yesterday - a friend in Hospital, Heart Attack maybe? Met a friend tonight his wife just had her 2nd Cancer in a decade, skin, cured, one swoop and done. His friend, inoperable Brain Tumour. Another friend, lost his father earlier in the year, wife had a terrible stroke (no one thought she'd live) but she did and was getting back together, now second operation for breast cancer in two months. My cousin, breast cancer, chemo, possible surgery. It just seems to be one thing after the other and it just doesn't seem to be slowing down, more and more people you know.

I remember being told that the older you get the more this sort of thing happens.

I have to say that despite moaning a bit about how I am I really ought to be thankful that I'm getting better and slowly getting there.

Goodness - did we depress ourselves tonight.

I wonder if

The reasons I get upset easily is to do with the reminder of what happened to me or what "could have" happened. Today - the Great North Run - all these people running for their friends or family who have terrible diseases or have died etc. It really upsets me I get quite choked up - I never used to.

I wonder whether it is the fact that it reminds me of how things could have been? Do they remind me of how it is or am I just very empathetic with these people? Whatever it is, anything like that makes me choked.

Saturday and getting organised at last

I'm getting ready for my studies which start tomorrow - the office begins to look as if I could actually work in it. The troubles of Friday are behind me. So trying to just ignore and blitz my way through work isn't going to have any impact. Perhaps I need to consider a day off a week or something to get myself back to full time work and not to be knackered half way through.

I'm as upbeat as I have been and I'm still confident about December and the results. My next set of tasks are to lose weight again. It fluctuates massively and to get work sorted out. Once I can lose a bit of weight I should be able to fit back into my work clothes again which will be good.

Off to start studying now :-)

I shouldn't be annoyed but

Some people are so backward looking, hate change, can't see things hurtling towards them that they could easily avoid and wear their ignorance as a badge of pride.

I met one on Wednesday night - the most obnoxious type of ignoramus possible who was rude to just about everyone. Then there is the work "jobsworths" who just drive me mental. It was bad enough in the 70s and 80s getting people to realise that they had to change but we are in the 21st Century and these guys are hardly out of the 19th.

I suppose that I ought not to be too upset or annoyed - they haven't worked in the commercial world and the third sector is very different but sticking their heads in the sand is surely going to be the wrong strategy.

I must learn to stop, don't get angry and walk about a bit. I'm actually pretty pleased that I don't have to attend any more meetings with one individual as I'm not sure I could stop being sarcastic - a very unfortunate trait of mine.

Whackety whack

Thought so - the alarm went - I gave it a look - thumped the off switch turned over and went back to sleep for a further 3 hours. A UTI - now I don't think so, it is just an urgency to keep dashing off to the toilet. It isn't as bad as three or two weeks ago or even last week but it makes you self conscious (am I leaking) and it makes you worried about being caught out somewhere.

At least I can work at home and at least I can get to the loo in a few paces.

I often wonder how long recovery may take. I really shouldn't be hasty should I - I mean in just over 2 years I am cancer free and stabilised so I should realise things don't happen overnight.

Here it comes

Wow - how tired am I tonight and the urgency to go to the toilet struck at the Station meaning I had to get off my train to dash to the toilet thereby missing my train and waiting 30 minutes for the next one by which time I was almost bursting again! Not nice, not happy. Off to bed and see how I feel in the morning....

Dragged out of bed

Here we go again - mind you I am not surprised. I knew I was going to be struggling this week and when the alarm went this morning it was a bit difficult to get out of bed. If I can clear my workload today - and there is plenty of it. I might be able to work from home tomorrow. I also realised that tonight is the only night that I am actually in as I am off out tomorrow as well!

If I don't take the day off I'll end up taking it off for the wrong reasons I fear.

I don't like me much these days

I'm really not happy with the outcome. I am belligerent, confrontational, sarcastic, aggressive, overly assertive and not really someone I like anymore?

I've sort of fallen out with who I've become in a way. I'm left post this experience with this "outlook" on life and "attitude" that, frankly, you would never understand unless you had been in my position. A whole new perspective opens up to you when you have been through this BUT only you and your fellow sufferers will ever understand the downright frankness of your opinions, the ability to say how you see things without really thinking too much about how other people "feel" almost a lack of political correctness if you will.

I find it quite disturbing as I nearly had a word with someone this evening who was wearing his ignorance as a badge of merit. Everyone knew he was an arsehole but no one was going to tell him - I stopped myself in time - a good thing actually as someone I know actually knew him!

How on earth do I get back to being "normal" again? Do I want to be normal? Have I some sort of insight? Maybe if I have I should keep it to myself?

Unlike me

Slipped up on some details on the paperwork over the weekend. A keen eyed chap has put me right but how annoying. The trouble is there was so much going on this last week I am surprised I got it all done.

Anyway, I am off out tonight to the Jazz evening. Another 1 1/2 mile walk along the same bit of road I have already walked up and down twice today! With a bit of luck I will get a lift back.

October

My how time flies by - tomorrow is October and things get interesting as I should be starting my course on Saturday! This blog is coming up for its second anniversary and I have a list of things to do as long as your arm! If your arm is 12 foot long that is!

Now IS the time to get back to being organised and yet yesterday was a nightmare tonight wasn't a lot better - I finally got around to completing a 200 envelope mailing that I started on Saturday.

I'm working like crazy at the moment to catch up with the workload I have both at home and at work and whilst I am keeping on top of it - it is all just in time and there isn't a plan.

Maybe by the weekend I will have finally got organised.

At least

I didn't end up down at the pub but was late home and have a pile of work to get through.

I seem to be able to last enough time to get home now - last week was very different. The feeling of having a full bladder (even when it isn't) and finding yourself caught short is pretty awful I have to say. But there you go, it seems to have passed now and at least I don't have the worry and nervousness of that journey.

It was nice to finally meet George Emsden this afternoon. George has Throat Cancer last year and he documented it in his blog (currently being moved). If you thought my treatment was bad, I can assure you that I would have totally freaked out with what George had to go through as he had to wear a mask whilst under treatment for throat cancer.

Well we both looked well and in top form today!

Chaotic day and I hope tomorrow is a little quieter.

How on earth

I managed to get up this morning I don't know. I suppose it is only once in a while - that said I out again tonight from work! I will be surprised if I manage to get through the whole week burning away like this. I also need to work out quite how I am going to apportion my time too.

It is a bit of a nightmare working out how I am going to get enough time together to work and do the course coming up starting next week.

Monday wipe out

Getting back to work was bad enough - yawns and tiredness were one thing. I was meant to be home but at about 4:30 got a call to go and meet an old friend. We went for one beer - I daren't even tell you how many that turned into.... Enough I think. Things got worse as a bunch more people that I knew turned up and suddenly it was gone 9 and I was meant to be home at 6:30.

I don't want to mention what got said.... However, not happy as there was bad news awaiting me when I arrived home.

Paid for working on Saturday

Wow did I ever pay for working on Saturday today. I had to do a fair amount of work sending out letters and packing envelopes - about 150 in total. By mid afternoon - I had just managed to watch the F1 Grand Prix and then went to sleep for about 2 hours in total I guess. I knew I bought my comfy chair for a good reason :-)

I ought to get off to bed now and try and see how I am for the morning. I haven't actually been at work since last Tuesday even though I have actually worked for most of the week!

Fraught but a nice day

On Saturday it was a lovely day, the Autumn sunshine burnt off the fog and it was a busy day. We were on duty from 8 am looking after car parking, guiding visitors to various areas and then had to dash off to get ready for the meeting itself.

It was nice getting promoted and then we were once again busy setting up the dining area ready for the meal. It came as a bit of a surprise that we were to serve the wine rather than, as in all previous years, to just put bottles out on the table. However, we got that organised and managed to do that.

I retired to the bar with one of my guests in the afternoon and we had a couple of beers before his wife kindly gave me a lift home.

After getting changed I relaxed into the comfy chair and snoozed :-)

It is always nice that people you know come up and ask you how you are. It was a great relief to tell them how well I was and how things have progressed so well. This time last year when we were at Margate I was just about to go into Hospital to see how the second lot of treatment had tackled the precancerous biopsies of the previous tests. Well a year on, I suppose I can be reasonably confident in saying that I'm still clear! How great is that?

I really enjoy going to these events and being involved and I was pleased that it worked as well as it did.

I also got some good news that I can step down as Assistant Secretary of one of my Lodges as a youngster ought to take that on, I was surprised that they are going to offer me Chaplain though, it is a very senior job in a Lodge. Wow! Mind you it then made me realise that I am now getting to be one of the older people in the Lodge!

I needed that - not!

I had a small team assisting me and all was fine but we ran out of work and I checked that there was one thing left to do. So I sent the lads off home and 2 hours later I went home - they had forgotten that a load of things had to be put up and so I ended up doing that.

It is going to be chaos again tomorrow as I have only half a team to do the work needed.

Oh well, what is the worst that can happen?

Off out

It will be an interesting day today and tomorrow. I have to go and coordinate the Lodge members to look after a big Provincial Meeting. All very well but when half of them aren't going to turn up and you are at least 8 people short it is going to make tomorrow a very long day indeed.

I get promoted tomorrow so I am looking forward to that and I have a couple of guests for the lunch as well so I am looking forward to a day out. Last year it was in Margate so - you may recall, I went down with a friend and we had quite a good time down there. I have a feeling I may have missed the year before when it was again local due to coming out of Hospital and having had the 2nd TURBT when it should have been routine biopsies - I well remember now how rough I was too after that particular experience.

It will be nice to get back to having this one locally apart from the lads and I will be running around like mad things to cover all the bases.

Previous Post

It probably wasn't clear but the point is that when I get ill now I find it quite hard to take time off or to actually be ill. For 30 years I hardly ever had a day off in my life and to start now and to find that I am genuinely not well is difficult to take -it almost affronted me if I ever took time off, I suppose I come from that sort of background where you would almost be accused of malingering if you didn't go back to work the day after having your leg cut off etc :-)

The reality is that I've never had so much time off, I've never been so fatigued, unable to complete things when I wanted to and generally not been up for doing things. Sometimes I'd rather stay at home and watch the TV than get up and go out somewhere. When I do go out I get tired quickly, cannot keep up and often these days, leave early and come home early.

Now I realise that I must have been ill as I can clearly remember what it was like before and after and I can compare, now that I am gradually getting back to a normal life (whatever normal may be), one with the other.

It is clearly a case of the mind thinks it can do something and the body is saying no. Occasionally my brain actually works out that beforehand too. It is just so annoying that I'm not fit and I'm not as mentally and physically agile as I was a few years ago. then is when the reality hits home and the fall off of performance is surprising. I find it hard to believe that I have lost so much strength physically and indeed, in some cases, mentally.

I'm not sure I want to accept it though, surely you get back to where you were before? Maybe not? Two of my friends are still coming to terms with it years afterwards.

I have absolutely No Idea

How ill I have been or how close I was to things getting worse than they already were. I can guess that another layer of cells invaded would have been very bad indeed and a few more hundredths of a millimetre may well have given me a more difficult time altogether and perhaps a bit of a sticky end.

The trouble is, apart from very early on when you know you are going to die - believe me that bit doesn't last long as you realise what can be done etc. I have deliberately kept any thought of how ill I was or may have been and anything else at arms length. In fact it is a way of actively managing the problem that you implement a screen of normalness and you do that for yourself and for your friends too. It is more now, on reflection and with these odd bouts of cramps and other little things, that I find myself realising that I've never been this ill before in my life and all these things are surprisingly debilitating.

I'm still having problems even now believing I was that ill and so occasionally it comes as a shock to be told how ill you actually were. Not death's door stuff but pretty poorly nonetheless.

Appears to be getting better

I think that I may be getting better. Today started a bit roughly but now all seems to be back under some sort of control.

My legs are still sore and at least it doesn't feel like I want to keep having to run to the toilet and piss blunt razor blades each time.

I really could have done without that but I must continually remind myself that I'm not 100% yet it takes time and there's me thinking I can climb Mount Everest.

I hope that it is back to normal tomorrow and more so Saturday as I have to sit in a room for about 2 hours and don't need to be getting up in the midst of a few hundred people needing to dash off!

Not at work again today

I'm not there - a late decision last night was that I'd just give things a rest - I'm not quite right and the frequency of visits to the toilet are right up - sometimes as mush as every 20 minutes. In fact, thinking about it I've been having difficulty since getting back to work last week and the train journeys and also getting to work have been close run affairs. Perhaps it is a UTI - Urinary Tract Infection.

I'm going to take thing easy today and just take notes and if not better then I'll get over to see the Doc tomorrow and get something for it. It is always a possibility that you'll get UTI - it warns you that it is one of the side effects, along with cramps I now see re-reading further past the normal ones....

You think you are over this when of course you aren't really! I need to repeat the mantra "Take it easy" or "Slowly, Slowly"

Still hurting

I am on different statins - could that be what did for my cramps in the early hours. I'll take them again tonight but this is the 3rd one of this new batch I have had. Mind you that wouldn't account for last Thursday nights although that was milder.

Gee - I hope I don't get that lot again, it would be too much to handle. I really haven't felt pain like that before.

My right leg is still hurting and throbbing slightly so I hope that it is OK overnight and I can get to work tomorrow.

Get Out More

Tiredness does stop me getting out and about as often as I'd like but I feel that I need to get out a bit more than I do now. The problem is that I don't actually talk to many people during the day at all - although I interact at work it is business speak. At home I hardly actually have any conversation more than a few sentences long with anyone.

When I do get out I tend to gabble a lot as suddenly I have a release. This blog is great as it gets a lot of the stuff in my head, out of my head. The problem is there is so much stuck in there clogging my brain up that once the flood gates are opened I need to get it out. Poor sods who do take me out end up giving me a damn good listening to!

I hope that I'll be able to dump all this emotional baggage and random thoughts so that I can get on with my University Course in a weeks time.

Sooner than I thought

I got double cramp again last night, apart from the agony that these attacks inflict - I can hardly stand properly or walk this morning such is the bruising effect on my calf muscles - there is the suddenness of these. Unlike the fatigue (although occasionally that can just turn up) there is no notice at all - I just woke up in time to realise what was happening and I can't even begin to tell you what agony it is, I very rarely yell out in pain but this always make me scream out, there is very little else you can do. How I don't want to have these when I get older, the convulsions alone and trying to get to stretch the leg and rub the muscles to relieve the knotted bit is so difficult. No - not nice and it still hurts now.

Getting to work is almost impossible as I can hardly put any weight on my legs.

Whilst I am used to getting this occasionally it is again, I'm certain, one of the side effects from the treatment. I recall someone having this. I was also having minor bladder spasms yesterday too which was very disconcerting and meant I was in and out of the toilet a lot yesterday and travelling home was painful as I was waiting for the train to get to my station so I could dash off to the toilet. Every bump and sway of the train just added to my discomfort.

In fact, it has only been a week since the treatment so I should be expecting that. You do tend to forget very quickly about such things and tend to forget that the side effects don't last a day. Interestingly the treatment is actually at its most effective next March! How Bizarre is that?

Payback

I reckon that by the end of the week I will be completely knackered - so much is happening this week. I have been out two nights so far and have had two full on hectic days at work too. I am working from home on Friday for the morning then have to go and help set up Provincial Grand Lodge ready for Saturday when that takes place.

I am going to bed in a few moments as I can feel the tiredness coming on. I need to have a further blitz on my work as I need to start preparing for my Foundation Course next week.

I have no idea how I am going to fit this all in!

Going to be wiped out come Sunday

I have the week from hell. I am out most days and most nights, I have to arrange a big meeting on Friday for Saturday - at that meeting I get to work like crazy and then get promoted and then have a meal and then work like crazy and come home. I think that collapse into bed and not get up until Sunday afternoon is a very real possibility...

Out with Rotary tonight

Yes - I got invited out and have to leave in about 10 minutes but there is beer and food there which is interesting! I used to be in Rotaract in my younger days.

I am going as a guest and it will be interesting to see if I know anyone there - it is just up at my local.

The next lot of wide awake or fast asleep

Kicking in. It must have something to do with the treatment - it is 1 in the morning for goodness sake - it feels like I am jet lagged - I could happily go off to work right now but in an hour I'll be so fast asleep that a small explosion wont wake me.

I may curse these side effects but I suppose I ought not to really.

Interesting note I came across was that the Treatment I have just had really builds and is at its most effective in 6 months time. I would imagine that I could repel a Flu bug from 100 yards just by looking at it. At least the husky throat has gone away a bit now and the flu symptoms are long gone. Aches in the legs, tiredness and wanting to go to the toilet more often are still here.

The Office

Not the Ricky Gervais one, my one. Back in here today trying to finally get my head around this and get things sorted.

It needs a concerted effort though and I am going to have to be ruthless with some of this older stuff I have. Do I need it anymore? Will I ever go back to being an Engineer or Project Manager in the IT world? Probably not, best to just throw it out and get rid of it on eBay or local Charity Shop. It is all just clutter now and can be removed.

It still irks me though that I just take so long to do things these days. It is mid Sunday morning and I just haven't got half of what I planned to do completed.

Retrospective

I was going back over some old posts and remember that this was a song I heard just as I was about to go to Theatre. Yes I thought that too.....

A Day in the Office

On a Saturday and keeping the hell out of the way from all the nonsense downstairs. Remainder of kids are off to University today so there is one grumpy soul downstairs, the other one has a cold and I have no idea what is wrong with the other one.

I have plenty to do so I am locked up here getting on with things I should have done weeks ago and never got around to.

I've also realised that I have a number of vacation days available just to me that no one else has so I have to try and work out what to do with those. I was hoping to take some time off at half term but the school wont allow extra days and C has to work term time and A doesn't get half term off at all. It appears she isn't even going to be around at Christmas now - she will be abroad somewhere. L has just a few days off but is actually studying.

I keep telling myself it isn't everyone being awkward (why is that such a difficult word to spell) or bloody minded but it just seems to be that everyone is doing something and that we may as well just go and please each other and go away or take time off individually. I'm almost getting paranoid about it as bugger all has worked out for months and any plans I have are scuppered by things everyone else does and then they say "Didn't I tell you?" Well obviously not.

So the sanctuary that is my office - mind you they have managed to screw that up as my power supply for one of my PCs has gone missing because someone has borrowed theirs? My printer is getting worn out by A doing her coursework and apart from that the Ryder Cup isn't on proper TV this time so if I fancy watching that I need to shell out a small fortune to watch it. I'm blowed if I am doing that.

So all in all, I have had a miserable day up here, my PC went wrong as well requiring me to divert time to fix that and I'm still only just gradually managing to get through my work. It is like pulling teeth getting this done.

Penny Drops - it is all about me

Could it be that this blog is just one big ego trip?

I need to go away and think about that. I hate it when my brain does that to me :-)

Where are all the survivors

Why don't you hear about them?

Steve Kelley makes a good point in this blog I touch on it here and throughout this blog the one thing that Steve has highlighted and that I support is there just isn't enough out there that explains what it is all about and what it is like to have BC. Maybe that book in me ought to become reality - probably next year when there is more news?

I became aware recently that a number of quite inspirational blogs were inspirational as the author was rapidly approaching the end of their lives and had insights into somewhere I don't want to go for a long time.

When I look at the number of people who took the journey with me and were diagnosed around about the same time as me, there are only 2 who are cured, me in almost remission and another who has a recurrence that medically shouldn't happen! All the rest are dead. Gulp! I'm not counting the ones that have been diagnosed recently. there are 3 others and 1 who is terminal. However, hundreds of other people I know are fine.

A lot of Cancers are treatable, a lot of cancers are still in the realms of if you are diagnosed you will need a small miracle to walk away although I do know Lung Cancer survivors but some of these are pretty nasty things and there isn't much you can do.

Where are all the survivors? What are their stories? Is it just like getting Flu and after a while you get over it and that is it? Is it that, dying and suffering a lot are better press? It is difficult to know. I wonder if there is still a stigma attached to being diagnosed with Cancer. I feel it from people when I tell them and many don't know how to talk to you. They are lucid and interesting conversationalist until you mention the big C and then they get tongue tied and awkward.

Don't get me wrong, I'd find it difficult to strike up a conversation with someone who is dying of something, I mean what do you ask them? I'm British so - of course - I can discuss the weather :-) but for all sensible people out in the world - what are you going to say? How long have you got? What does it feel like? Aren't you going to miss your wife and kids? It is difficult n'est pas? So perhaps when people talk to me - "You look great", "How are you feeling?", "You haven't lost your hair?" , "never heard of it!". It isn't that they are being insensitive it is that it isn't within their experience, the only thing they know is that people generally die from cancer. They treat you warily.

The trouble is that people do survive, those who do survive don't tend to be telling everyone, apparently my Grandparents both had two lots of Cancer each and survived. It got my Grandfather eventually but my Uncle told me that - my parents never did, although I do remember vaguely being told something. There isn't a lot out there about surviving, they say it is on the increase and occasionally you get a story - Kylie Minogue, Ewan McGregor, Patrick Swazy etc. What I am talking about though are the massive amount of people who actually survive. Prostate cancer for example is something, if known about you can die with and not from! Bladder Cancer, as long as it isn't invasive you have a good chance of surviving it. You can walk away from many of these and yet for some reason, as Steve rightly says, you cannot find those stories out there and those are the ones you need.

Survival figures are OK but they are just statistics. I am going to generalise here and repeat something I said a long time ago. The places on the Internet where you find the most information and stories about BC are in fact the places you go when you need to tell your story and get an audience. There was nothing uplifting there apart from people's humanity to their fellow sufferers - there was pain and tears and death and disfigurement and it was all in all a depressing (there - I've said it) experience. I wanted to be uplifted, get some hope and try and work out which way was up and help myself to grasp onto something that no one seemed to be able to help me with. What was going to happen? how am I going to feel? What is it like? That is what I needed not "my treatment has gone wrong", "It didn't work for me", "I've got 3 months left to live" and so on.

I now realise that there are other reasons that you don't see such stuff. It isn't good copy and once you are on the road to recovery you don't need the therapy of writing it down anymore. I see it as my own way of getting the baggage that this cruel little disease causes amongst my family and friends and of course what it does to me off of my chest but at the same time to capture it, it sometimes is trivial ramblings, other times it is what actually happens, no reason to imagine that it doesn't hurt, that it isn't degrading to have things shoved up your privates, no reason to believe that some days it is as boring as life can be and that other days you are glad you are alive - just like normal really.

Maybe then that is it. Do many people just treat Cancer as part of anything else that happens to them and treat it as normal, get on with their lives, don't think too deeply about it, don't feel the need to write about it, research it or do anything else?

It appears that I have asked more questions than provided answers on the subject. I really ought to stop writing this and go and do some work.

The title sounds like an Airplane crash - "Where are all the survivors", they have to be out there somewhere, there just aren't many using the Internet - perhaps you are denied broadband access if you get the Big C??

Have a good weekend.

From one of the clubs I belong to

This arrived with a note of hope. See next blog for the downside.

Communications Breakdown

A really good track by Led Zep of course but more like the train wreck that is going on around me here.

It is getting to be a strange world of dancing around each other at the moment. I walk into a room, they walk out, they walk in and I walk out. There is no temper or animosity here just the need to get some space and not to fire the snipes in which aren't particularly helpful.

I can't say things are going great and I'm not sure how the weekend will be as "A"s boyfriend is off to University this weekend as are many of her friends. Everything is just a little on edge at the moment and frankly I have no idea how it is going to pan out by the time everyone has stopped dancing around their own particular issues perhaps I will get some indication of what the hell is going on.

I have a massive week coming up and need to be getting on with loads of paperwork, clearing my office and organising people for a major meeting next week. These are things that have just piled up and now are urgent when they didn't need to be and could have been tackled earlier. Oh well, I know what I am doing this weekend. Loads of work and keeping my head down and probably staying in my office the whole time.

It isn't over until the Fat Lady sings

No idea where that comes from but it sounded a fun title:

I was asked a number of questions over the past 2 years or so. Here are a few:

Q: Did you think you were going to die?
A: Yes for about 2 or 3 weeks until I went and found the answers to most of the questions that needed answering.

Q: How can you let people stick things up your (Penis/Prick/Todger)?
A: It is a bit like this - what happens if I don't let them? You die!! Simple choice really

Q: Why are you so happy all the time?
A: Because life is too short to be unhappy. Because I am probably cured. Because what is there to be unhappy about - I'm alive. Any variants on the same are acceptable.

Q: How can Cancer be funny?
A: You have to have it to see the funny side. I'm not being disrespectful you do have to laugh at the things that happen. if you didn't you'd cry. I still remember with eye watering clarity kicking my urine collection bag across the ward and then realising it was attached by a pipe to my catheter which was in turn inserted in me. Now it wasn't that funny then but it is now.

Q: Do you think you will die of Bladder Cancer?
A: No I will die when my heart stops working! Actually I don't think it will be BC, maybe another type or some sort of heart problem (although I am on preventative drugs for that). Natural causes like getting old would be preferable.

Q: Aren't you annoyed that you no longer work in the IT world?
A: Don't forget I worked in IT in the Finance world - look what is happening now. Glad I realised that it was a shallow and non honorable towards the end and got out. I sometimes miss the wage packets and all that but I don't think I'll miss the two faced nature of the business these days.

Q: Working for the Third Sector has to be tiresome?
A: No, far from it, it is actually (but don't tell anyone) the best job in the world. Where else do you get to pull kids out of poverty and make sure that they aren't singled out as different. Giving Kids the opportunity to an education is the best work in the world - no it really is. Imagine using all my years of experience to make sure others get a good start in life. The best thing I ever did. I didn't plan it that way either!

Q: Why go for a Degree?
A: Why not. I never got the opportunity when I was young. I've had the goal of getting better. That is almost achieved now - I need another goal to be as stretching as getting better. How about going for a BA (Hons) Degree?

Q: Why do you keep banging on about collateral damage?
A: There is no doubt that I have made new friends through being ill but also, old friends haven't been able to cope with me being ill through whatever reason. Some have drifted away and may drift back. Prejudice is inherent with Cancer (not sure why) and people who haven't got cancer deal with it in different ways. You mustn't forget that people of my age rarely saw anyone survive cancer, or if they did, it came back and got them later. Of course things have improved but your subconscious carries these prejudices around. Back to the point of you'll lose and you'll gain some friends and you'll also not realise but you change yourself and so people wont recognise you for who you used to be and you may lose them through that.

So now think how those who have to live with you all the time react to you changing, you being ill, I'm sure they may have thought I'd die too. What does it do to them and maybe you come out changed and they don't. This is where the collateral damage concerns arise. You can try and minimise it but just think of the strain that it puts the family under. At the time, the last thing I'd be considering is what is my illness doing to them - I am fully concentrated on fighting my own little battles.

Cancer is a physical disease with the capacity to really screw around with your brain :-)

I know I SHOULD be at work

But I was tired and not with it at all this morning. Not the beer, only had a couple, more the brain going into overdrive on a task I now "own" that needs to be sorted pretty quickly.

I have so many silly little things that need to get done that I had the whole lot going around my head overnight and now I am drained thinking about them all.

At least I have a clear way of addressing these and a day at home will straighten many of them out.

Normality

What is normality? I'm returning to normality someone told me! Hardly, there is little normal left these days. I think it would be a good exercise to go back and look at a before and after and see what things have changed in the past 26 months or so.

I quite like the fact that a number of people at work know and a number don't know what I have been through and that is interesting just to see their reaction and their way of dealing with it. Normal people are generally far less comfortable than those who have had something seriously wrong with them.

I met someone who was uncomfortable watching the Paralympic Games. I wasn't uncofortable about that at all. I'd suggest to you that every one of those athletes puts me to shame as I just had Bladder Cancer. Whatever they had was far more serious than me and what did they do? They went and achieved great things. I was very moved by it but to say it was uncomfortable? I think normal may indeed be defined like that - I need to think about it more to come up with an answer on it. I wonder if people looked or indeed still look at me as being "disabled" and all the baggage that tends to go along with that? I know I was treated differently in a previous job.

Oh well, the beer draws near and this question can wait a bit longer but one worth starting I think. Are people with Cancer looked on with the same prejudices?

The answer should be there shouldn't be any but if I look deep down inside, I'm sure that there are areas that still need a change in attitude.

What a day

I surprised myself the sheer volume of work I got through and I don't feel tired and - here is the good bit - my Nephew is coming over to take me out for a beer! Excellent, I'll enjoy that.

This happened last week too as I recall, no doubt it will all catch up with me tomorrow or the day afterwards!

I'm getting worried that I am picking up someone else's work at the moment and keep dropping hints to that person that they shouldn't lose "ownership" of their stuff to me but as much as I hint.....

Perhaps a word in the bosses ear?

Anyway, apart from the normal dashing to the toilet every 45 minutes to an hour everything is under control and I am beginning to lift myself slowly out of the rut.

Good to get back to work

It was a bad night's sleep but I was up and this job is so good you want to get up and go, I have to feel really bad not to.

I had loads to do today and so was kept busy but boy am I tired now. It is just gone 9 in the evening and I should have finished off some documents but I am really tired and it is taking me ages to drag myself through it. I think I will leave it - at least tomorrow I stand a good chance of getting it done in half the time.

I crashed out three big pieces of work today and another couple tomorrow will see most of my key time critical stuff done. Perhaps I can get a breather and get on with other things. My course starts in two weeks and I need to get ready for that. The office is coming back into some sense of normality apart from my laser printer is being thrashed to death by "A" as she gets up to speed with her coursework.

Whilst I am feeling tired I am feeling different. Upbeat maybe, certainly I am feeling quietly confident and happy that treatment is behind me. Not a great whooping of joy or anything like that as of yet but certainly a gradual and noticeable lifting of the spirits.

All I need now is to get my head back into its old organised mode and I will be really pleased.

Procrastination

I'm still not getting anywhere with the procrastination going on in the household. We nearly didn't get a holiday at all with all the messing about going on, messing around at University and the fallout since. "A" has now gone to college but lives at home and the upheaval that has brought about are all causing a little less than a settled and calm home life.

Now there is the round of farewell parties going off as all her friends go to University. OK but coming in at midnight when I have to get up at 5:30 is going to cause a wee bit more friction before the week is out.

Anyway, the next bit of fun is that "C" has signed up for an evening course for the next 17 weeks, mid week which also messes up diary dates and commitments. My course starts in October and I have spent today sorting that out and trying to get dates in the diary and planned. My Operation screws up Christmas - or the lead up to Christmas and potentially all the things I should be involved with, I did expect it to be around 16th December but earlier will mess up a lot of things.

I hope that we get some sort of closure on this soon, it is messing up any plans I may make - it is unsettling and it is time to settle down.

Cure or Remission?

The longer you go clear with bladder cancer the more chance you have to say that you are cured. There are a number of ways to work out "your chances" based on data gleaned from previous cases.

The longer you are clear the better - but it can still recur - and so you don't actually get cured you get remission. If there is anything that nags at the back of your mind it is the possibility that you could get this again and go through the treatments and operations for another cycle. I'd not like to have to do that but - frankly - if it happened - I'd just have to.

I read an article that in reality GPs and Consultants really cannot say the "cure" word because of the above.

I don't think it is anything to worry about but you can see why they follow up so often and continue to have a peek inside on a regular basis. Again, you'd have thought (if you weren't a cancer patient) that after you get the final all clear that is it but, in reality, I'll be getting regular check ups to make sure all is OK. They aren't exactly the most pleasant tests (see my post on flexible cystoscopy and you'll see why) but if they detect a possible recurrence then it is well worth it.

Profile now on here

I thought it about time I switched my profile on - here it is on the right.

I had to kill off some of my other blogs as they were not pleasant - mainly in terms of me ranting on and using it as a flame room. I've killed that site off now. It has served its purpose of allowing me to scream at the world rather than to do that here.

You can also see my other blogs which I haven't really concentrated on.

Goodbye

Bleach tablets, latex gloves, anti bacterial scrub, tablets, note pad and pen, stress balls and all the other stuff that got me through the treatments.

The paperwork is in my dedicated drawer of Hospital information - it is a massive file already - a lever arch full! The stress balls have been great as they allow you to take out the tension on those whilst getting instilled with the BCG. It certainly gave me something to do with my hands.

In the time that I have been having these treatments I have almost (not quite) read the three massive volumes of Martin Gilbert's History of the Twentieth Century. I am up to 1994 now but I don't want anymore BCGs to allow me to finish that off. I need to make an effort and finish it soon as my course starts in two weeks time and I will need to concentrate on loads of set books and DVDs etc.

I am feeling quite pleased and a little elated this morning. I had the most amazing dream session last night so many dreams - really weird stuff - as they tend to be - but there was no main theme but it was all high octane stuff, rally cars, fast boats, athletes, skiing - maybe it was all about freedom - who knows?

It feels quite curious to be here and taking the next step towards recovery. Another 12 weeks and an operation for biopsies and then a nail biting wait for results will then take everything close to Christmas and the New Year. It would be nice to think that 2009 could start with good news and a lift some of the clouds of the past 2 1/2 years.

Not often

That I write on the blog on the day of treatment and this late at night. It has been a bit of a stinging affair but not nearly as bad as it normally is. Now that is last week and this which is strange.

I'm going to take myself off to bed now and hope that this stays as mild as it is now. What a bit of luck, I was expecting a final reminder of what it can be like. Mercifully it is just a mild one. Phew!

One Habit I won't be sorry to see go

Is the preparation for today's treatment.

This will start in a minute after writing this blog:

• Tablets to bedside
• Notepad and pen to record events to bedside
• MP3 Player to bedside
• Shower and change into jogging bottoms and casual clothes
• Timer ready
• Bleach tablets and liquid ready
• Latex cleaning gloves ready
• Book in bathroom (you gotta believe it I spend anywhere up to 20 minutes a time sitting around)
• Antiseptic wipes ready
• Bio soap ready
• Auto e-mail responder to on
• Mobile phone set to off
• Phone removed from bedroom
• Gilet nearby in case shivers set in

That is the list I think. It all becomes a routine thing to do and I'll be able to not do any of them after today. Still not sure how I feel about it all at the moment. It will be interesting to see what the reaction is like this week. Last week there was enough to know I'd had it but nowhere near what I was expecting. Fingers crossed for a similar experience this time.

Mixed Feelings

Now that the last treatment is here I am daring to look beyond where I am today and on towards the next stage of my life.

The ups and downs so far though are:

• You change - those around you don't.
• FUD - Fear Uncertainty, Doubt - will it come back, collateral damage (to relationships).
• Physically less active and loss of stamina (probably short term).
• Mentally - stronger in some areas (tolerance to pain/procedures).
• Mentally - weaker in some areas (emotions shot to ribbons especially when sad things are on. Empathise with people more).
• Mentally - Assertiveness - much more judgemental, quick to retort and shoot those down who show little mindedness and selfishness - not always my best side or most likable I have to say.
• I thought I had the best job in the world when I was diagnosed, in fact I have the best job in the world now.
• I've lost a lot of my organisational and well planned skills - I am not the logical, planner and person on top of everything I was 2 years ago. Now it is a little too chaotic for me.
• Only I want to do things I want to do. I am completely out of tune with those around me.
• I am much more "laid back" at work and they say that nothing is ever a problem to me. Well it isn't. "How hard can things really be?" I just remind myself of what I have been through and there isn't much can be worse apart from something more serious of course.
• Writing it down is good for you - even if it isn't always the 100% of what you feel or even if you tone the language back a bit.

So much has changed in 26 months that I can hardly believe it. This blog will be 2 years old soon. Whether there is some greater plan at work, I know not. I do have a nagging worry that this isn't the end of things - I suppose we all do. The risk of recurrence is always there unless you have surgery and there is the bottom line for me when I think about it. It was still caught early enough to treat it, sure I had some surgery but not a removal of the bladder which would have still arrived at the same result. You don't have cancer.

What nags away is that I may be more susceptible to other cancers and yet, I am physically fit (despite the obvious limitations of my treatment and fatigue problems), I am mentally tough, I don't have colds or other problems with my health - this is the first real problem I have had in 30 years.

The last treatment? It sure is and it lessens the possibilities of anything nasty happening with that. It can be pretty deadly if this goes wrong. I will not miss the whole experience - it wasn't high up on the things I want to do before I die list anyway. I will not miss the side effects which, either I am getting used to or they lessen as there isn't anything to react to inside my bladder. Certainly, the first tow lots of treatment I ever had were really doing their thing. These days, rough as it is, there isn't anywhere near the pain, debris and side effects as there used to be. I hope that is the case today but who knows it might sign off with a bang :-)

Strange feelings, I won't miss it but at least the bathroom will stop smelling like a swimming pool on a Monday evening.

Last one

The last treatment? I hope so, I really do. This time tomorrow it will be over and I hope that I'll be able to look forward to brighter and better things.

Life around the house isn't all peace and harmony at the moment and I doubt that my rather uncompromising responses actually help the situation when all said and done.

None of these things are "life threatening" and are just trivial - as you know, I really cannot take trivial stuff and arguing about nothing. Oh well serious things elsewhere. A friend called, he lost his Father earlier this year and his wife had a very serious stroke leaving her seriously disabled although she continues to make great progress. She now has Breast Cancer and he has lost his job. Life can be downright cruel. What more does the family have to suffer?

Puts our little spats into some sort of context.

Making Up Your Mind

How difficult can it be to work out what you are doing in a month's time, let alone today.

I find that there is a general lack of decisiveness generally but at home, sometimes, it can really drive me nuts. I am trying to get a decisions - any decision about a number of events that are coming up. Do you think I can get anyone to say yes or even no? Of course not!

So trying to plan anything is almost impossible and even if it is planned they sometime change their minds. Maybe, just maybe when they all get back today I'll get some sort of answers. It isn't for lack of trying.

On a sad note, I just heard that my friend's youngest brother was found dead in New Zealand from, as yet, unknown causes. He was feeling ill, got out of his camper van and the owner of the site found him collapsed dead sometime later. How awful.

Out soon

Hope I can stay awake. Just had a long snooze in the chair and didn't want to as I missed parts of Qualification for the F1 and MotoGP. Doh!

I'll have to try and ensure that I stay awake this evening.

Psychological Boost

I feel really quite well and apart from a very slight dry throat (it is yet another side effect) I'm really feeling quite upbeat and it has to be a combination of having had such a good reception following my presentation on Thursday and that at that point, possibly more than any other, it laid down who I am and what I can do and set the scene. Finally I fit in at work and they - for the first time - saw me presenting in full flow and emphasising in the right place, inserting the humour and playing the audience. That was good and ego is comfortably been stroked with that. I have that smug smile you wear internally when I think about it.

Then, of course, is Monday. How I really want it to be the very last time I have the BCG instillation and yet when I first started having them and didn't know if they would work I had resigned myself to potentially having a life time of them. Within my grasp now is the very real possibility that this will be the last.

I can't even begin to tell you how good that actually feels. Winning the lottery I suppose, getting a gold medal, maybe? It really is a weight off of me and it does actually feel like that too. I do feel lighter and it is amazing how "light" you feel your body is weighing you down and your arms and torso just feel like they are dragging down your shoulders and your head is down. I have no idea how your body does that but you do really notice it.

I am feeling really upbeat today and just want to get on with things that are lying around in my office here.

At long last I am close enough to the end of the tunnel to be dazzled by the light and make out the walls and details. Better than that, it is near enough to smell the fresh air, see the sunshine beaming in to the portal. Not long now and I can be out there, out of the tunnel, off of the roller coaster and emerge blinking into this new landscape. It will be different from the scenery I saw before I entered but that is no bad thing is it?

I need to cope with a few of the extremes of my changed persona - especially the utter confidence and over talkative bit. I need to work on the accepting that a lot of people are in fact idiots and not get sharp, angry or down right rude to them. I also need to work on this emotion thing. I am still finding that side of things quite difficult to cope with. I have a feeling that I see other people's experiences and sort of tack my experience alongside it. I feel really bad for them but not for myself, sort of surrogate suffering :-) I am sure this will subside over time as, I am certain, will all of the other "side effects" both mental and physical.

It is nice not to have to go back to the despair of a year ago. It is great to be alive and to be able to look forward again. When I consider everything else that has happened and the people I know who haven't made it through the same period it is a bit worrying. Three of us survive, at least 3 died and one who survived now has a recurrence. People get Cancer all the time, perhaps it is me but a LOT of people appear to be getting it, maybe I am just attuned to hearing or filtering out the word Cancer in discussions and in print? They said Chernobyl would take 20 years to get us :-) Crikey I hope it isn't that!

Now to pack away the Cancer baggage and move on to see what will happen in the next chapter at the other end of the tunnel.

Hard Day

Boy we were all tired this morning back at work. It takes it out of you setting up and then taking down a presentation and with attendees close to 25 or so we had a lot of networking to do and plenty of sorting out food, teas and coffees as well as doing our own work.

We then did some entertaining and hence I got home latish but then needed to catch up with stuff here.

Anyway, I took an earlier train home and promptly fell asleep on there until we arrived at the station and have walked home. I'm writing this, doing a couple of e-mails and then I am going to get changed and collapse into my arm chair!

I am actually quite pleased that I made it and haven't really had any fatigue problems. What is also quite gratifying was someone noticing that I have lost a bit of weight. I haven't been seriously dieting I have though been taking things easy and laying off big portions etc.

Buzz

Wow, that went down well - my key note speech. However, with all the clearing away and all that - it is now tomorrow! Kind of :-)

I have to be up in 5 hours...

Will I make it?

Blimey - when the fatigue kicks in

It is going to see me over for days. I cannot believe how much work I got done today. All hell broke loose and I contained it all but ended up missing out on a meeting this evening because I was late. There was no way I was going to make it after I had been told early in the morning that extra work needed to be done.

So, I really blitzed the work out and all is now ready for tomorrow. It isn't over and tomorrow is the big day - a large conference - I have the keynote speech which I am relishing and dreading at the same time. I am also facilitating one of the Syndicate sessions. Additionally, as I know a bit about technology, I am looking after IT during the day too.

It is going to be the biggest challenge I have faced and I am looking forward to it. I know just how much this will take out of me and I have to entertain some into the evening too. That too is OK but after that will come the payback and I have no doubt I will be wiped out for the weekend. It was nice to hear from a friend of a friend this evening that my people are pleased with what I deliver.

Other than that - today was my day, I forgot about most of the the day to day and got on and made my mark today...

Am I ever tired but, I need to be on top of my game tomorrow.

I bet you can't tell it was a bad day today

:-)

About the worst day I have had in terms of head stuff. I'm trying to work out how I am the villain of the piece but then I don't do beat around the bush or gloss over or some other sort of "it didn't really happen" stuff.

You know if you ask me a question you will get the answer you don't want so why ask me. I go back to the curse of the INTJ (Myers Briggs Personality Type). I don't see things other than what they are, I cut through all the bull and get to the point. In my eyes if you ask me whether something is black or white then it will be one of those it wont be anything else - I don't deal in anything other than that.

It annoys the hell out of me when I'm asked something and I spend time analysing and coming back with a reasoned and well thought through argument for it to be ignored. The fun part is that you'll get even more annoyed with me when it gets to the point of "I told you so!"

So - bad day? You bet. I've got a house full of moody women and although I managed to get out for an hour with a friend for a beer and a get it off my chest session when I got back all I got was "you're back early!"

Anyway, back to work tomorrow. Woe betide anyone who wants to give me grief tomorrow. I really have had a belly full of that today.

Dealing With It!

How difficult is it to talk to someone who is dying? How about expressing your feelings to a friend who's loved one is seriously ill. Do you know what to say? Do you feel inadequate and can't put the right words together?

That is how people deal with me when they know what I have or rather had.

Then there is the other side of the coin. Only if you have had something like this can you begin to get near to understand what it does to you mentally and physically. You put up with a hell of a lot of things and your mind has its own battles with itself inside your head and sometimes you just have to let it do that. The fear and the terrible dreams and the (lets not beat about the bush here) the pain of it can best be described as indescribable (I have always wanted to use that phrase and had to work it in somewhere).

The worst bit is acting normally and then getting treated normally because actually, you wouldn't mind a bit of sympathy sometime. But we all know where sympathy is placed in the Dictionary (if you don't it is between Sh1t and Syphilis) - it's an old saying we used to use.

So what am I banging on about? Well I'm getting some of the anger out of my system. You see, it's actually another problem when dealing with it and that is the very real worry that it will come back, that - then - at best you may have to go through all of this again or at worst - well you don't want to thing of that but it could be that would be possible. With BC there are some other avenues for sure, like get it all cut out and use a bag which - if it keeps you alive - is acceptable I think.

No the issue is - am I more susceptible to cancer from now on or have I got past that. I've discussed that your personality doesn't change but your attitude does and your outlook does and those who know you well either get used to it or they don't. I can't say I always like the "new me", it can be quite assertive and also quite dismissive, critical and I don't do messing around or dithering or procrastination. I'm hard on myself because my "performance" has dropped off and my brain isn't as fast as it used to be and physically I'm a mere shadow of my former self but all these things are adding up to do one of two things:

Either you like me like this and get it
You can't understand it and don't like me.

The latter lot need to decide what it is to be and stop pussy footing around and perhaps I need to take the initiative a bit more.

Whatever it is, the depth of all the issues that face anyone in this situation really does lead you to consider your own mortality, then, what you want to do about it. Those who don't "get it" may not understand that as a Cancer Survivor, every day is far more precious than before, things sometime cannot wait as you may not see them done at all. Other people's petty bickering and flirting (by that I mean just not getting on and making a decision) all don't have a place. I see it at work and wonder why the huge fuss over nothing? What earthly good can come of wasting your life in discussions or arguing about what font size to write a document in and so on.

Talk to a group of Cancer sufferers and those who have recovered and their whole outlook on life is different. I connect with these people easily now and immediately you find out that they have or have had Cancer, there is a rapport that comes from knowing this stuff "ain't for sissies" and that they will understand the issues you are having with non sufferers in general. It doesn't make things at all easy as relationships you have had for a long time I have found begin to suffer.

And Another Thing

Only one more left to go. Then in three months an operation (Yuk) but that should give them sufficient data to see whether I have won the lottery or not.

So far it has all been good news. The longer you go without recurrence the better it is. It has been close to 13 months now and by December 17 months clear - well with no cancer there. Same thing.

Could it be that this whole episode can be wrapped up and put in the "experience" cupboard? I do hope so.

The problems now are dealing with it - next post deals with what I mean.

The Good, the Bad and the Ugly

Yep,

Good - Was OK and apart from a little discomfort on instillation all was OK a little bit sore and the usual this morning but it wasn't anywhere near as bad as I expected this time.
Bad - "A" spent 4 hours on her first day at Uni and decided she doesn't want to carry on.
Bad - Whilst I am in the worst state of this treatment (about hours 4 to 6 in) they want to talk to me about it. Ugly - how it got when I lost my temper. At about that time, I have aches in my joints, minor cramps in my arms and legs, muscle spasms in my bladder and my middle feels sore, let alone my marriage tackle feels like it has been kicked inside my body. The very last thing I need is some "decision" to make and it isn't my decision anyway, if that is what they want to do, get on with it. Just leave me alone to stew - I feel like sh1te anyway, don't make me feel any worse than that. As you can tell I wasn't happy - not with the news itself, that made me feel sad really but, I'm not the one there and whilst I may ask awkward questions and be less than amused by how quickly defeat was admitted - it isn't exactly rocket science if you don't like the people and you don't like your flat mates etc.

Ugly - No one listens to my advice anyway, they ask a question, don't get the answer they want and go off and do what they planned to do in the first place. To say I needed that sort of conversation as I was doing my wriggling about thing would be an understatement. I can barely combat all the twinges and spasms going on in my body let alone think straight.

So give me a break. I wouldn't go and ask an RTA victim directions, would you?

Forgetful people

No matter how widely I tell people that I cannot take messages or talk to them or do anything when I am having this BCG treatment you still get the idiots who want to call or say didn't you get my e-mail and all that.

Drives you wild. I wonder if some people are just thick or stupid or both. Whatever it is, it is always them that have been put out by my lying in a darkened room. Selfish gits. :-)

It is all downhill after today

Penultimate Treatment. A bit like the Olympic Stars saying - "It hasn't sunk in yet". It hasn't; but I am beginning to think the unthinkable, that perhaps in 2009 it will all be over.

At least I am in a better mood this morning. The crazy bit is that what I probably need to do is to be quite brutal to the people who cannot get organised and let me know on time and if they want to come along on Wednesday and they haven't informed me prior to the deadline that I just say NO. That will teach them! You can lead a Horse to water and all that.....

So, how is today going to be? Well, judging by this morning, I'm the one slightly stressed out and I really shouldn't be as I've done everything I can do and it is out of my hands now. I need to just wind down a few notches as I don't want to be tense when I get the treatment done. You don't want to be wound up or stressed out for that - no way.

I'll fire off some warning e-mails and C is pretty good if anyone phones up - she tells them that I I've had my treatment and I'm lying in a ball upstairs - "Do you really want me to disturb him?" Those that do, soon realise that the very last thing I want to be doing for about 24 hours is talking to anyone, not that I can often with the croaky voice I get with this. Funny side effects it gives you, the worst being the fuzzy brain when you hunt for words - it is really frustrating to find that you stop in mid ......

Sentence :-)

Right, doing the blog isn't going to help me complete my work so I had better get on.

Today

I cant say that this weekend has been high up in my list of happy or enjoyable times. I'm under pressure to get some work done and I am not being helped because I haven't got answers back by today to enable me to do that. Treatment will prevent me actually getting things done in time.

I've had the trauma of A and C getting to University, deciding whether or not to stay at the Flat - gee thanks for that 1 year's rent down the toilet or not? As you know I really don't like indecisive people. Unfortunately the weekend of almost minute by minute U turns drove me nuts and even now I'm sure I haven't heard the last of that. A now has one of her flat mates turn up who she has taken an instant dislike to. Maybe it is just me, I've had to work with plenty of people I don't see eye to eye with but there you go.

Being a planned person it also doesn't help when things get ordered from me last minute and so generally I was pretty unimpressed by this weekend's goings on.

In the meantime, I have been trying to sort myself out and get ready for my Key Note speech on Thursday but again, people are missing the big picture and scratching at some minor detail and totally missing the point there. I need to tell someone tomorrow.

It all actually builds back to the treatment which will take me out for a day and a half. I need that time not because of anything I have failed to do but because everyone else around me has missed their deadlines, cannot make their minds up or are otherwise being priggs and they all want me to sort out their problems. Normally I would do so but I can't and I know that something is going to give later this week, I'm just not sure what. Certainly someone is going to get the sharp edge of my tongue if nothing else.

Getting ready

Yes Monday will be a bit of a landmark day I suppose, it will be my penultimate treatment and in a way I am beginning to get enthusiastic again about what I can do once this is a little further out of the way. The limitation being, I guess, my physical state but despite that, I really am looking forward to not having this treatment as an excuse. I know that the next 6 weeks or so will see a repeat of the side effects but, apart from the operation in December, that could be it for a while.

I'm sort of tired of not doing things and I am looking forward to getting some of my social life back.

The treatment does fuddle your brain though and sticking at things other than work seem to give me difficulty, I cannot really go beyond a couple of hours intensive brain work and less than that if it is physical without needing a break. I did manage to get some stuff done this morning but this afternoon I am struggling.

Time to go and read through my course notes for my Foundation course I think and map down what I'll need to be doing in the next 9 months of study.

Somewhat unexpectedly

C has decided to stay down with A at her flat. Nice to give me 5 minutes notice I always think!

It also proved a little more than difficult to ferry the other child to her appointment this evening given I got 10 minutes notice that it was required and the fact, which after I had explained it, sunk in, that my car wasn't in fact in the driveway as they happened to have used it to move into the flat and if they looked out of their window would have seen my car a good many miles away from where it was needed to undertake the errand they had asked me to.

Noting like a plan and let's face it that was nothing like a plan as they also managed to leave their credit cards and cash here as well so not a lot got done at all.

What hacks me off is that no one even thought that through and then I get it in the neck!

Anyway, it is late and I'd best go to bed I suppose. I can have a real moan tomorrow if one or either of them gets back.

Off to University

A has just left with her Mum. I'm a little bit envious. I doubt she sees it the same way I do. I never got the chance to go to University and so that is why I am envious.

I could have gone, I was good enough to go and do History - I remember it well, it just wasn't what you did and I very much doubt my parents could have paid for the privilege either. Our school really wasn't set up like that. If I had gone where I was meant to go to school then things may have been different. I am of course making up for that now by studying for History now and I start next month myself.

However, the way my office looks at the moment after we have rifled it for stuff to go to University with A I need a weekend to clean it all up to get ready.

It is strange but I'm really pleased for A, I don't feel that she has moved out and that's it or any great upheaval like some parents do and all this outpouring of emotion and tears etc - what is all that about? The last thing we need is for any upset to be happening it is probably stressful enough for this next few weeks - to her it is the unknown and she is the one being brave and getting on with it, the last things she needs is for her supportive parents to be blabbing at her departure.

She has the next 3 (or 4 if Gap year) to have a great time, make friends for life, set up her career and become independent. What an opportunity? Good for her.

What a heavy day yesterday was

Full on day and I managed to get a mass of things done. I'm on a working party for a new campaign. That isn't easy work as it combines 4 disparate organisations and tries to give out a common message about them. Much gnashing of teeth and wailing :-) However, massive progress yesterday. I don't agree with most of the outcome it is shows little ambition but hey ho!

The rest of the day was given over to the forum next week. My speech and presentation is a key one and needs some serious work - I am at home today to do justice to that. I need to produce a book about it as well which is almost finished. Additionally the delegates packs needed thinking through and getting started, I again got that moving. I need to produce about 10 documents by Monday morning but this suits me. A is off to University today and I wanted to be home to make sure that I at least waved her off. I can't go with her as the car is so full of stuff there is only room for two including the driver so C will go with A down to her new flat and work out what is needed as there are bound to be things they need.

Last night I got to the station and they cancelled my train so I went and worked at my club up the road. That was useful as I got a lot more thinking work done. The downside was I did another 3 hours work more than I normally do and so I was absolutely knackered when I got home. I reckon if I hadn't been working from home today that I would have to have gone in late or taken the day off anyway.

Anyway, plenty to do, must dash.

Jazz

How do they know just when to join in and make a great sound? Well I should know a bit about this being a musician - you just feel it and join in and jam along.

It was a lovely evening and I did enjoy myself and that is the point isn't it? Just get over the hump that says "don't" and just get past that and go and do "stuff". It is liberating, I just wished that I let go a bit more really. We "Brits" can be a bit reserved and we don't really let our hair down. Perhaps we should, we are good company and I managed to get at least 10 laughs this evening on the table.

Unfortunately the part of "annoying talking animal is already taken" - don't you just love Shrek and (of course) we get a slightly different version in the UK - we have Jonathan Ross as the Ugly Sister/Barkeep! (Like Jay Leno but without the chin or humour!).

Anyway - so nice to get out and let rip a little - I was in danger of disappearing up my own backside :-)

Blat

Kerpowww, wallopp! Thwack.

Yep - great words - just how I felt today, I had forgotten the hoarse voice and the brain scramble you get with this treatment. Boy did I do some work today. I got a the document finished, a whole load of stuff for the presentation next week done, two letters and another two documents fixed plus a few other things including getting my brochure approved for printing.

I am knackered but I am not resting I am off out tonight to the Jazz Club - great I could do with an evening out.

Ready to go to work

And there are still 10 minutes before I have to leave. Terrible night's sleep I slept fitfully and my legs were playing merry hell with a sort of mild cramping in each - enough to merit attention but not enough to turn into cramp. They still ache this morning.

I feel awake enough - I guess I will get tired quickly once I get to work and actually catch up and then do something.

The crazy, strange and beguiling world of BCG immunotherapy - welcome to my world :-)

The Trouble with Sleeping in

Is that at 11 pm I am wide awake and I need to be up at 5:30 am....

This is the tough bit - I made sure that I got a lot of rest as when I haven't in the past, it has wiped me out. The problem now is that come Thursday I will be utterly knackered and perhaps I'll ask to work at home on Friday - that would help things along nicely as we only do 6 hours on Friday and I could do more here as I wouldn't need to travel.

Right - off to bed and see if I can actually get some sleep?

Treatment 1 of 3

Was - as usual - a little bit sore to start with but once done it was OK. I was in and out in no time which was a relief, nothing quite like waiting for 20 minutes to have a pipe shoved up you :-)

The usual turning, pills and going in and out of the toilet with bio hazard precautions followed.

It sure did sting a couple of times and I've thrown out some large lumps of bladder lining this morning but I feel OK. I feel sore around my middle - not surprisingly and a little befuddled which is pretty normal. I am trying to sort out my office and just don't really feel up to it and I remind myself that I really should be sitting down or having bed rest. I will do that soon I think as it is stupid to come up here and overdo things, I've done that before and it just sets you back.

Other than that - not a lot to report - strange and bizarre dreams no sign of the tormentors anymore thank goodness.

I'm glad I am alright and I am pleased that there are only two more to go - I know that they will be a little worse than this one but it still goes back to no pain, no gain and positive attitude that these things, unpleasant as they are do work and the results have been wonderful so far.

Here we go again

Let it be the last time. There could only be so many Rocky Movies so please let this be the last lot of three BCG treatments that I need.

The traditional ritual or perhaps habit now kicks in. I have had my lunch at 11:30 and my last drink before midday. My treatment is at 2 pm. If I get there a little early perhaps I will get done a little earlier too. I now need to get my drugs together, something to read and perhaps something to listen to. Additionally I will get my notepad to keep a record of things as they happen and my bleach and stuff to go into the toilet.

I've signed off from work with an auto response message and I only now need to concentrate on getting everything in place.

I remember last time it being worse than I remember and strangely the brain has a wonderful way of not remembering that.

This time I have been less "nervous" although I can feel slight apprehension at the moment it isn't anywhere near what it was prior to the first times.

Anyway, I sure hope that this lot does its stuff and that come December we can turn a page, start a new chapter and move on.

I thought about my cousin the other day who is having chemotherapy and remembered what a personal thing it is having treatment. No matter what you say to people you cannot express what it is like. You have to go through it yourself to fully understand it and words are not enough. Many people say that they don't know how I could let people do what they do to me - and I certainly was in that camp myself but when the end justifies the means you can accept just about anything. The call it life because they don't call it practice or rehearsal. Once you get that into your head and that maybe life is a little more interesting than the alternatives the choices are do it and live or don't and die :-)

Profound stuff for a Monday :-) Anyway, here we go and my Open University Foundation Course stuff has just arrived - excellent.

24 Hours

To go to treatment and I'm not thinking too much about it apart from noting it down here. I am wondering whether to work with the very real possibility that these three could be the last and that way I can work my mind into "only three more to go" and so on down to "last one!"

Of course, that isn't to say that this is the lot and I won't need anymore of course. Considering how vigorous this was initially and how they couldn't believe the biopsies and the way they had managed to tackle this, I suppose I ought to be prepared for it to come back? As I said before it can do that but the longer you go without a recurrence, the more likely it is it will have gone altogether. The other good thing is that it is relatively slow growing and can be caught (although I am guessing not in all cases).

Already I am feeling much better about the future and I am beginning to pull out and away from my normal demeanour perhaps back to somewhere and something like I was 5 or more years ago. I strongly believe that I have been "ill" for some time before I actually got ill. On reflection I was getting lethargic and lost interest in lots of things and didn't really want to get involved in anything.

It is a strange thing to say but the changes happening to me at the moment are quite surprising. I know I am getting better. I can feel my attitude and outlook on life and general confidence and self esteem are rising. It is about time - I'm getting slightly less cautious about things concerning my life and my future. There are less reasons not to do something - so less objections to suggested evenings out, going visiting and socials which I have tended to avoid (even if I do enjoy things once I am there).

My only challenge at the moment is to get beyond the fitness, fatigue and exhaustion stage which is probably the most annoying thing as it just happens often without any warning and it can just wipe you out. I think the one thing I do need to do is not take on so much at a time and to pace it properly. Trying to continue on like I used to and doing too much just isn't going to help.

Mountain of stuff to do

I have sat down at my desk and looked at a complete mountain load of things I need to get done. It is a bit daunting when you see quite how much there is but I just need to work my way through it all. That isn't easy when I keep getting trivial interruptions and also that the remainder of the household seem to be using my office a lot today!

I just hope I can get through all of this stuff in the next few days as my desk and my large work table / drawing board are disappearing under all sorts of paper, boxes and CDs, DVDs etc.

It is amazing quite how it gets like this. My desk at work is ordered tidiness but here it looks as if a small bomb has been thrown in to the room.

I'm surprised at how Monday's treatment hasn't been playing on my mind and it was only really in the last few days I began to think about it. Whilst I am not looking forward to this - I can, I think, take the view that these may the last ones of these I have to do. I might well need a yearly flexible cystoscopy but that is probably going to something I can deal with slightly differently to these and I understand that they are done locally too which is a great weight off my mind as having to get to the first Hospital we went to which has very little parking and is a fair drive away, at least this one is so near that I'll be able to get home quickly and suffer in silence rather than squirm inside a car or taxi for 30 or more minutes!

Anyway, three more to go and perhaps this episode can be placed into the experience drawer and life can get back to whatever next it will throw at me.