Tuesday, February 12, 2008

Treatment News

So yesterday was the last of this batch - my goodness I have had 18 of these - I'm sure the Urology nurse has seen my tackle more often than the wife :-)

Anyway - so I asked what the next steps are if all is clear:

Another batch of BCG like this one - which is 3 followed by a 9 week wait and another 3 and then operation and biopsies 12 weeks later. If that is clear, repeat the same one more time. If that is clear - then that is it! No 8 years worth and longer periods in between operations etc. I imagine that there would be some visual scoping and tests along the way.

That was a surprise - I was expecting a lot longer but modern practice appears to be this regimen. I could be finished with all of this around about this time next year in that case. Amazing.

A change in the wind

I am up, I am hurting (you'd better believe it) and I'm feeling good about myself at last.

First, the treatment was instilled quickly and easily and with minimum discomfort - better than the previous two but the side effects this time were immediate and started bang on 2 hours in. I am pretty uncomfortable right now as not only is the area sore but also there are occasional spasms of my bladder and urethra. Interesting and these things are strange - imagine if you have had a muscle spasm or twitch and then transfer that downstairs - a very strange sensation (where do you change the batteries?).

So I am going to leave his PC alone and go and rest up in a few minutes as I know I need some rest - I should have stayed in bed longer but someone put the phone back in my room and someone called about 45 minutes ago so I was awake then.

Other than this - I am feeling a lot better knowing I don't have another one of these next week and that things seem to be changing, my outlook is better and I notice that I am beginning to look outside of my own little world which I've lived in for quite a while. I am not feeling so thunderously depressed as I was and the weekend seemed to do me good - perhaps I had someone who had suffered the same stuff as me and so I was able to get a lot of it off of my chest. It was very therapeutic and I feel like a huge weight is lifted off me. I also think that the course I went on also made me confident that I could make a living at it and that I could be successful (not being nasty but a lot of people hadn't thought it through before they went).

I've written off for details of a BA Hons History Degree that I think I'd like to study and I have the details of the Professional Genealogists course too. If I can make the figures stack up, then I will look at this if the other job that a friend has lined up doesn't materialise.

So whilst I am not feeling great this morning physically I am feeling very positive mentally - more so than for a long time. Long may that continue.

Monday, February 11, 2008

The Unsung Hero - Heroine actually

Is my wife. Today she will run me up to the Hospital and double park to wait for me to have my treatment, she drives me home, keeps an eye on the timings and puts up with all the side effects such as me being grumpy or tired or lazy or sleepy or wide awake or insomniatic and just about everything else. I can't imagine that it is great to see me in the state I'll be in later today or to hear me grunting and groaning every-time I try and move to make myself comfortable.

She has never once complained about it, she has just got on and been there all the time and she has cheered me up when I've needed it too.

I will have to start acting as if I deserved all of this attention.

Right - off to get ready for the last one this session - I'm sure that I'll be back on this stuff again in June or July if all goes OK with the Biopsies.

Suddenly it is all matter of fact

I was just reading the previous post. It sounded more like a press release than me talking. Such is the ongoing normalness of such things like treatment and operations that it is just something that happens to me now.

Before I used to be all wound up about it but it appears to me to be part of my every day life now.

My friend in Canterbury asked me if I feared anything these days? I thought that was a strange question but I was able to answer that no I didn't fear anything now. I can still get angry or anxious but I don't fear things anymore. There is probably a good reason behind his question but there is something quite refreshing about being a cancer survivor. You don't take prisoners anymore and you deal with shallow people in a very assertive way. You don't worry too much about things - what is the worst that can happen?

Having said that - I am pretty bent out of shape by the stuff going on around the Tribunal but again, what is the worst that can happen? The worst that can happen is that I lose the case. Is that fear or just anger?

Anyway, I am just surprised at myself for being so matter of fact about getting the treatment, having an operation and all of that. That is a big change in less than a year.

So here we are - final treatment of this session

Count three months from today - about the 6th May - and I should be in Hospital getting biopsies and we will see just how effective things have been. The longer you go without recurrence, then the greater the chances are that you are winning the battle. There is chart somewhere that explains all of this but, it generally shows that your odds of recovery improve greatly as time goes on and there are no set-backs.

By continuing to treat and then pulling that out over a period of time the treatment continues to renew the bladder lining and so lessen the chances of recurrence.

Anyway, final treatment and in a few hours I'll swing into the usual patterns and rituals to see me through the day. The last time, this third one proved to be the worst of the 3 so I will again be on my guard. You have to treat them all with respect.

Not a criticism - just an observation

When you get Cancer - your friends are too close to you to know what to do about it as they have been hit about as hard as you have (in a different way). SO I don't want it so sound at all as if it is a criticism, in fact, I only realised this the other night talking to my friend in Canterbury. Those nearest and dearest to you get thwacked with your Cancer diagnosis themselves and they have to deal with it too. I'm annoyed now that they went through that and that it has taken me this long to realise.

What was amazing was that those who I knew well but I wouldn't put them into family and friends category came in closer whilst the close ones moved away slightly.

I'm not sure that this post is making sense or being sensitive enough about this. Just an observation that in getting my diagnosis it hurt the circle of my friends and family. It didn't send anyone into misbehaviour (apart from me) - I don't think anyone got angry or bent out of shape about it, we don't do emotion as a family and it is rare that voices are raised or doors slammed etc. My friends have been great but I hadn't thought that my diagnosis and treatment would upset anyone else but me - it does tend to be a personal and selfish experience in my humble opinion. It does affect other people around you and we all deal with it differently.

I'm annoyed with myself for not seeing this until now - sure - I've had lots on my plate but it isn't at all like me - I am pretty good about this sort of thing. Some would say that I was superficial but they'd just be scratching the surface!

All is OK now - I think that it is just an interesting subject to explore a bit deeper when I get time. I never asked anyone else how "they" felt about it as it seemed to be so personal to me.

Sunday, February 10, 2008

I've been so often I didn't know the half of it

I have been to Canterbury a lot of times. For the Cricket - for work but not since I was a youngster have I been in the centre or in the wonderful surrounding streets.

I was a lovely walk to the IHGS offices through some period streets, buildings all out of square and regular shape as they sag with age and display a character new buildings just cannot. I shall have to take myself off to Canterbury again, armed with a camera and a good guide book the streets should come alive and tell me their history. It looked marvellous and I eaves dropped a number of tourists and their guide talking about one building. Fascinating stuff.

It isn't that far from me but takes a good 1 1/2 hours on the train. It takes that long by car too unfortunately. However, the whole town looks great - the traffic has always been a problem and I think I have spent more time on the ring road than in the town.

So there you have it - another wonder explored and a place to go on my to do list.

The course was a useful one I thought - you needed to contribute and yet not too many people did. I felt that a number hadn't really thought through their business strategy and were somehow hoping that by a miracle it would all come clear and they would go home and start trading in Monday. In reality I actually felt I could start trading on Monday as I have already covered off most of the bases. I Won't of course, as Monday and Tuesday are probably going to be spent in a darkened room with the last of my current batch of treatments.

Anyway, having met A's mentor and had a longs chat and having done the course and seen those who I am up against as potential competitors (and having met those taking the course) I can see that there is a market to be achieved out there and it just needs a few more major decisions to be made as to whether to incorporate or not or whether to trade in my own name (self branding no corporate branding) that needs to be decided. Having an interchangeable or two businesses is also a possibility but then there are two set up and admin costs and split equipment charges etc. All very confusing and perhaps the most difficult decision to make.

Thought Provoking

An interesting day and lots of information that I can say I already knew - perhaps 80% of what i heard was as I had expected. The 20% though was interesting. Afterwards I spent a great evening with someone who I have a lot of time for and that I am growing to like more and more. A's mentor in the photographic world. A lovely guy and a kindred spirit. Isn't it great when you meet someone you can relate to and share similar experiences with?

A good day out in Canterbury and I'll say more as it sinks in - for now - it is late and I need to go and get my beauty sleep!

Treatment day on Monday and that is the lot for a while - yippee!

Friday, February 08, 2008

Looking forward to tomorrow

Off to bed now as an early start and I am looking forward to having a day of working out whether I ought to be doing family history research or not. It will be interesting to hear what others have to say about it and whether there is a living to be made or whether it is all just so much wishful thinking.

Well - I'll find out tomorrow.

Come on Brain!

The one thing that I have noticed is how "slow" and forgetful I am these days. It could be the treatment it may be the Statins it may be just old age but blast it all, I forget things that I never used to forget before! Like making a phone call that I should have done this morning - my alarm went off but that isn't a lot of use when I wasn't even anywhere near to hear it go off! I've just recalled that I should have been doing something. I thought perhaps I should be out somewhere or doing something and when I went to look, there it was a missed phone call. Blast it!

If there is one thing I miss it is my previous ability to have all my tasks worked out and to tackle them - these days I write out the list and promptly forget where I put the damn thing!

Anyway - I am looking forward to tomorrow so much. I am off to Canterbury to go on this course and I will see how I stack up against the competition and what the "experts" reckon on taking up a researchers role. I have printed off some business cards as a temporary measure so I can hand those out and start networking early. I just need to check train times and get my stuff together for the morning and I can go off and enjoy myself. After the meeting I am going to be going out for a few beers with a very nice guy who is helping my daughter with her photography and lets her use his studio and facilities. As he wont allow us to pay for the materials I ought to at least buy him a slap up meal and a beer!

Friday again

Where did the week go to again? It is Friday and suddenly another week has gone and I couldn't tell you where the time went.

I fixed my CV up this morning and whacked that off to my friend. Let's see what they make of it? It is amazing how many really interesting and complicated projects I have been involved with over the years. I was quite impressed once I wrote down a list of some of my achievements. I haven't put them on m CV as they aren't recent and yet - these are all household names and well known businesses and buildings. These days, the recruiters tend to go on the first page only of your CV - you could turn water to wine or make gold from lead and they wouldn't notice it :-)

It will be interesting to see quite what they make of my experience and also what sort of value they put on that level of experience and expertise. There aren't too many have sat on both sides of the fence or who fully appreciate the needs of the builder and the IT personnel too.

Way over left field

Well that was a bolt out of the blue. An old friend of mine just called - they are looking for someone who has a good background in construction and computer room design and implementation and also has good IT skills too. Strangely enough, there aren't too many people can do all the building work and understand the IT piece too. Can I send my CV in tomorrow? Well I suppose I can and see where that goes. It is a bit strange as there have been a number of e-mails and phone calls with people after my services.

I ought to follow this one up as it is a massive corporate and household name and that in itself would be interesting to me. It wouldn't do any harm I suppose to go and look at it at least. Perhaps that is what I need in the short term - someone to think for me?

I got a lot done yesterday - I am still up because the oldest has been out to a concert in London and has just got back! She seems happy enough as the band gave away some freebies and she got a handful of them - the freebies that is!


Still no news about Chicago although the registration has now commenced there is no program published either as of yet. I hope I hear soon as that will also determine what I do this year too. I can then get to and plan what I will do about holiday/vacation in and around Illinois. Buffalo/Niagara and Rochester are all within striking distance so perhaps spend some time driving around the lakes.

Anyway - it is late and I need to get off to bed as I have to get myself ready for Saturday and my course and work out train times and so on.

Thursday, February 07, 2008

Breaking the bonds

Gradually I can feel myself making positive progress forwards. I'm not quite as focused on the baggage dragging along from the past at the moment, maybe because I have done something about it? This morning feels a lot better and I don't know, perhaps as I actually talked to someone about it last night or that in a week their response to the tribunal should be through and things can move on. Production of some hard evidence would be useful I suppose.

It was a good night out last night - I really enjoyed myself and the only thing is that this morning I still ave this sore throat and very very slight cold. It is just there in the background - I expect the immunotherapy is beating it up as we speak!

Lots of things to get on with today and I've already sorted out one batch of letters and posters to send out for the Easter Egg hunt which is looming large this year.

I now need to get cracking on a load of labels and addresses for a mass mailing I have to do - thank goodness that most of the stuff now goes out by e-mail.

Well - I'd better go and get stuck in to that I suppose.

Wednesday, February 06, 2008

So many things to do, so many excuses not to do them

I got the table plan and dining cards sorted out and then two people cried off so had to re-do the lot. It is too late now - if they can't get their act together then so be it! They will just have to be sat where I put them and tough luck.

It was quite amusing some time ago when someone forgot to tell me until the day he was dining and I put him out of order with his rank and position - after the meal he was quite indignant. To which I used the now famous words "Did it make your food taste any different?" and "Well, it was hardly life threatening now was it?" I believe he may have complained about me but who gives a toss! Life's too short.

Talking of which, I still cannot get my a**e in gear. It is just so easy to get distracted or lose time over the day - it just bleeds away - a bit here and a bit there. I've been mucking about with this dining plan for about 3 hours. It should be a 45 minute job at most. I've spent time reading some blogs, looking at a few web sites. OK I did a little bit of research on shopping carts for my potential new business too but as my old boss used to say "Never confuse effort with achievement".

Mind you, I'm not feeling that bright and have been yawning most of this afternoon and have taken tablets for this sore throat which doesn't seem to be going away although (touch wood) it isn't getting any worse either.

At least the meeting this afternoon will cheer me up.

Slightly Empty yet Overloaded

I saw a blog post from someone also with BC who was in "burn out". They'd got to a point where they had information overload about their condition, had lots of recurrences and more procedures than you could count on two hands. The upshot was that they were just staring at loads of paper, reports, and their job was messed up as there was no continuity through the amount of time off. Finally, they had been concentrating so hard looking inwards that they had forgotten everything else that was going on around them. That's about the time I reckon I'd just go and lie down somewhere or try and get a break.

it made me stop to think and consider that this is a lonely disease and quite an introverted one at that. I have this blog - it has been really good for getting stuff off my chest no matter how trivial it may appear. This is an outlet for much of the anger, aggression, sadness and minutiae of the things I go through. I can see that there is a build up of negative energy in the way things have panned out for me. I'm particularly disappointed that I never really got to celebrate being given the all clear and that I cancelled a lot of things for the business (and I use that term in its loosest possible meaning) that I worked for. I had a lot of focus last year on that and it took my mind off of what was going on here. I was busy and up until the end part enjoyed that. I don't have that enthusiasm at the moment nor can I get that sort of enthusiasm for this new venture. It is as if that spark has been extinguished.

What am I getting at here? Only that I begin to recognise the barriers in my way and the things I now need to overcome to get myself back on form and back to somewhere near my old self. I presently have too much time to think and analyse rather than getting on and doing. I hope that this weekend will convince me to either go or drop my business plans. Whatever way the decision goes, at least another hurdle can be navigated and things can move on.

I don't feel like I'm burnt out, I do feel like I am overloaded with detail and fact and that I am taking ages to come to decisions (not surprising considering the thought that went into taking the last job and the outcome so far). I am probably doubting my own abilities and I am still coming to terms with things round the disease, even now!

More as I work my way through this. It isn't new information, it is what I have been struggling with since December in reality. Oh well - another set of things to overcome and without my magic wand none of them will go away easily. Perhaps knowing what all these things are will make it easier to deal with - I certainly hope so, I'm not enjoying life at the moment, it is full of conflict (real or imagined) and I don't need that. I guess some of that will iron itself out in the next few weeks - let's hope so.

Dawn Breaks

The sore throat is still here but hasn't got any worse and the sneezes are at bay at the moment. I shall take a few pills to see if I can shift it as it is quite annoying.

I'm up early as I set my mind to it and I have a stack of things to do today - not least of which is to work out how to do some partial labels in a mail merge. That will be fun.

I'm off out tonight and have to do a table plan and sort out the dining and so that is also something to get on with.

I've been OK so far this morning - I still feel sore around my middle but no debris falling out of me so far today.

I will not overdo it today though - nice and easy with the recovery. Only one more to go and this time next week I should be looking forward to a couple of months rest before the next phase!

Onwards and upwards

Certainly - I have been taking it easy today and tomorrow I intend to get cracking at last and get some more off of my to do list sorted. Today I have taken it easy but i needed to as I have been having quite a bit of debris falling out of me and whilst things are a lot less sore than last week the debris tends to give off a little stinger every now and then.

I spent quite a bit of time on the new business plans today. I'm looking forward to the weekend when I go on the course run by the IHGS - Institute of Heraldic and Genealogical Studies. I think this will give me the "acid test" that I need to determine whether this really is a viable business opportunity or whether I am off on some dream. I tend to think that I can put myself to this, I certainly hope so and I really want to make a success of it if I do. After the course I hope to meet up with a friend and have a few beers and perhaps grab something to eat too.

I'm a bit worried tonight as I have been sneezing a lot and have a slight sore throat. I don't think that I have had a cold since July 2006! All this immunotherapy has seen to that. I need to be careful as it can be one of the side effects or, if I do have a cold, I have to be certain that they will let me have the last treatment - they don't want to confuse the side effects with a cold that looks like flu that is! Fingers crossed it is just me stirring up the dust in my office :-)

Tuesday, February 05, 2008

Ongoing Treatment

I was told a bit more about this as I explained that I was due for a Flexi but cancelled it (the right thing to do). Apparently, in the short term - no flexi at all!

I get the operation for biopsies and then further treatment and then another operation for biopsies and on we go until they are happy. The reason is that they need to look at the cellular level for the tests. The flexi can only give an overview of what is going on. So - whilst I wasn't happy that it will continue to be operations I am glad that they don't take any chances on this.

I was wondering whether there ought to be a customer rewards scheme for the Hospital - I go there often enough I could collect loads of points!

Anyway - all I need to know now is the ongoing treatment regime so I can understand that as the period between treatments slowly extends. The nightmare would be to get this to recur and have to start it off again! Let's not go there shall we :-0

Recovery from treatment 2

Well I certainly know I've had this treatment. It wasn't anywhere near as bad as I was expecting and was less than last week's in some ways. The treatment definitely worked though and there were some large bits of debris which were really the only eye watering moments. The catheter this time was OK - you'll never get used to it but it was much quicker and nowhere near as painful as last week.

I'm pretty sore around my middle - I would have said feeling like I had been "Kicked by a Mule" but I have no idea what that feels like so let's just say it feels as if someone has punched me just below the stomach and just above the Crown Jewels :-)

I intend to get a day of rest again. I could sit here and start to "do things" but I'd only put a strain on my middle and I don't want that. All I want is severe thumb strain from using the remote to dodge day-time TV - whoever invented that ought to be cathertherised and made to watch it with lots of fizzy drink!!

Anyway, only 1 more to go and then I can relax for 3 months. Then I have to have an operation. More of that next post!

Monday, February 04, 2008

Here we go then

Off now to turn off Phones and PC and then it will be a shower, loose clothes, get the MP3 player ready, the pills are there, the notebook and hold onto the rails and strap myself in for he free roller coaster ride!