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.