Thursday, May 17, 2007

The cumulative effect of knowing that you are getting better

It is a strange old thing. I'm obviously pleased that I'm clear for the moment, that the treatment will in all probability give me a clean bill of health within the next 5 months, who wouldn't be. The ten year long term follow up plan is great and if, as is often the case with bladder cancer it comes back, at least they can get it early and not as I started this journey - an early diagnosis but could be earlier :-)

Anyway, yes I'm really pleased about it and as every day has gone by, I'm a little more pleased about it and feel a little more confident in what I've been told and the odds have improved. Speaking of odds, because there was no recurrence in the last three months since treatment - the odds change. Finding two precancerous areas is better than finding CIS or a tumour there so my odds of recurrence have gone down as well which is good.

All these things are really positive - they all add up to the best news possible. It is just taking me a long time to get used to the news and the improved outlook and the optimism that must go with that.

The lost parcel

Which should have been with me on Monday has been found, in South London - hey couldn't find me as the house number was transposed and there isn't a house with that number in my street.

I'll have to wait until tomorrow to get the parcel and it contains all the stuff I should have posted on Monday. Blast - that means tomorrow I'll be busy as you like stuffing close to 200 envelopes and trying to get them all posted.

Wednesday, May 16, 2007

Well we had a few tonight

I met up with some friends and we discussed the news and all were happy and we had a few beers in celebration. I am feeling a bit better about things at the moment and whilst I'm still not dancing in the street I can see why my consultant was happy and why I should be :-)

I'm not really a miserable old wot-sit but I am quite measured in how I react to most things. This being one of them!

Working without a watch

The battery died on my watch yesterday and I am finding it a strange experience not knowing the time and keeping on looking at my arm but there isn't a watch there!

The spare watch and my pocket watch have also stopped working so I need to buy three lots of batteries.

It has been a somewhat strange day all around and I've gradually been getting a bit more animated about things. I'm out again tonight - I'll actually end up being out every night this week now and I'm out on Saturday afternoon too.

Perhaps Saturday evening or Sunday we will get out the Champagne - there are a few in the fridge.

End in sight

In more ways than one. It looks like - at last - the Insurance company has all the paperwork it requires to make a judgement on my case. I should hear in the next 5 to 7 days. Whatever way that goes will also define how I tackle the next decisions especially on the job front.

They called me today to let me know straightway that they had all that they now required. If they payout then it relieves a number of niggles and small worries and gives us breathing space as it isn't just about me although the decisions would affect what I had to do to run the home financially.

It has taken 7 months to get this far on the insurance claim. I'm not too bothered but if I was terminally ill or perhaps severely disabled with this I think I would be annoyed - it is one thing you really don't need to be thinking about at a time like that. It isn't the insurance companies hold up either. Finally today they got the last pieces of paper they needed. They had to phone up and get them but such is the chaos that is the NHS at the moment.

I've had the attitude on this that if they pay out it is a bonus and that I'm not expecting it to cover what I've had. I'll leave it there for the moment. It is one of those other things you have to deal with when you really didn't want to know.

What is interesting is to go back and read the early stuff from time of claim and some of the early material here and realise just how poorly I was last July/August. On reflection I am so much better than I was then, still (perhaps) a good few pounds heavier now than then, but I am really quite fit too with all this exercise and healthy eating stuff.

Precancerous - exactly what it says on the tin

A premalignant condition that, if left untreated, may lead to cancer.

The treatment should ensure that there are none of these precancerous cells return and that nothing gets back to where it was before.

It is a strange thing that you can't see anything wrong, you can't even feel anything wrong most of the time and you can't see what progress you've made or how the treatment is going. It makes having bladder cancer a surreal experience. In fact, the only times I feel ill are post operation, the stress before an operation and the BCGs make you feel tired and a bit sore. Other than that, you wouldn't know you've got problems. It was like carrying around an unexploded bomb in your body and not even realizing it. Bizarre.

As today progresses the more I realise that I really have crossed that line between the extremely dangerous and the dangerous but manageable. I still thought that I'd get hit with waves of relief or joy or something and it is not really like that. It is more a satisfied smirk than a fist clenching and pumping YEA! Oh well - you can't have everything.

Well I feel different this morning

It could be wind :-)

No - I do feel like a weight has been lifted off of me this morning (it does feel like that too) and I feel well in myself. I've done my exercises and pushed those hard this morning so there is a bit of exercise buzz in there too.

It is nice to have others around you who speak rationally about the news and make me see how good things really are - which is great, so thanks to them all for that.

In business one of the arts is to separate the emotion from the facts and in business, I'm good at that. It is very difficult to do it when it is you and your body going through this.

Positive and upbeat thinking needed today.

Tuesday, May 15, 2007

Should I be leaping about or just like I am now

I really am quite low key about this. I thought I'd be leaping for joy at the news and I have again surprised myself that I am quite matter of fact about it. I made one of my mates squirm tonight talking about what I was about to have done and - realistically, this time last year I'd have squirmed too!

I'm just nowhere near as upbeat. Perhaps I set sights low so as not to be disappointed. Whatever it is, I'm going to go to bed now and perhaps wake up in the morning feeling great! Who knows.

A Brazilian?

Not quite.

In an earlier blog I mentioned that there was a huge bare patch on my leg like 6 x 4 or perhaps even 6 x 8. So I had to ask what that was for - as you do.

Well it was interesting. They have to cauterise the areas they cut out of your bladder and that is obviously electric. If you ever saw the film clip of the operation they use a loop of wire and as it cuts out the tumour it cauterises behind it.

So - bare leg?? Yes they have to earth your body so that the thing actually works. Being of somewhat hairy disposition, they have to have a good contact and that is why I have a shaved patch on my leg.

The female element of this household were sniggering that Dad had had his legs waxed. Well the best bit about this was it was done under general anaesthetic and I didn't feel a thing! So there!

Fast and Efficient & OH YES!!

Left at 4:30, appointment bang on the dot at 4:40 home by 4:55.

Deep breath:

Here goes:

Clear - original areas are clear
Small areas - tiny, precancerous - cut out and no longer there

Next Steps:

6 more BCGs starting 4th June finishing 9th July.

3 Months after 9th July - oh dear - operation to biopsy the bladder and see what has happened. Interestingly enough this HAS to be done when you are knocked out.

If that is clear - maintenance - but it has to be clear to do that. Maintenance is 3 BGCs, 6 months, flexible scope, review, another 3 BCGs and so on. You get the 3 BCGs and gradually they build the time between reviews from 6 months outwards.


Conclusion:

I really wasn't expecting to have the biopsy operation. At the back of my mind I thought it might be needed but wasn't sure quite what they do but if they have to take more biopsies then they have to do that under a general - she did say that she could do a local but it wasn't particularly recommended and wouldn't be high on her list (or mine if the truth be known).

So, if you'd have put this on the table and said to me last year that in May 2007 you won't be worried about losing your bladder and using a bag, they've stopped the cancer from invading and this next lot of BCG is only tackling two tiny areas rather than the larger areas from before, I'd have pulled your arm from your socket.

Deep down inside I am really pleased. The BCG did its stuff and the next lot - whilst not pleasant, should see off these little pesky areas. Not sure about yet another operation in 4 and a half months time but perhaps I can live with that now.

Have things changed? Perhaps. I actually need to adjust my thinking and challenge myself a bit as I know this is a great step forward and I know I can live with this. It is whether I can work around it and manage my life with it that are the next big steps. No doubt more as I run through all the options and ideas and feelings that I have now.

Yesterday I thought I had this planned out for all scenarios and I'm not walking around with a big smile or anything at the moment - perhaps that will come later?

I'm out for a few drinks this evening so perhaps I can relax a bit then and temper the relief, excitement, gratefulness and yet slight disappointment and work out what really is important like getting a few beers now my neck and having a good time :-)

Count down

I'm just getting ready to go to see the consultant. One of the last appointments of the day and so I could end up waiting for ages or be seen in moments - who knows - another outing for the MP3 player (not that my MP3 player is challenged in that way you understand).

I'm ever so slightly on edge even now. I know they aren't going to do anything, just tell me where we are and what is left to do and plan out the follow up treatment. Yet I'm quite nervous about what they will say and how they will say it. Strange - I suppose it is just the uncertainty and realising that I shouldn't second guess what they will do next.

I see this as a moment where I can get a grip on my life again and set off tomorrow with a clear understanding of how I am, what I can and cannot do and what I need to do to keep me well. After that I can get to planning and tackling this backlog of work.

Improved Chances

The BBC are doing a story today about survival and cancer. In fact it is their theme all this week.

The Web article is HERE

There are no league tables here but you can imagine that developing some cancers are better than getting others. You may think bladder cancer is a bit eye watering with what they have to do to get in and out but, the treatments available are well proven and the prognosis is generally pretty good. Certainly the 5 year figures are good. Of course, the other problems that mess up the figures are when was the cancer diagnosed and at what stage was it.

Anyway, it was an interesting article and bit on the TV today.

Had a seriously bad moment back there

You get some bad times and sometimes when you don't expect it.

I was just sitting here thinking and suddenly I had a flash back of the three operations the original procedure under local and the dreaded IVU and got quite upset - I feel quite upset now writing this as well. It was all the grizzly bits and the re-living of the stress going into theatre and so on.

Shudder!

It passed pretty soon but perhaps that was my brain drawing a line under that lot and getting ready to move on - I sure hope I don't have to have any more of those.

Strewth, 3 operations, one local procedure and an IVU X-Ray thingy all in the space of 10 months. Now that I put it like that no wonder I'm feeling a bit emotional.

Like waiting for your exam results

It is quite important isn't it? A friend had to wait an extra week to find out that he didn't have something really nasty - imagine that sort of wait. I remember waiting to be seen the first time and hoping that everything would go away so that I didn't need to be seen.

Those were frightening days - 10 months ago now. Of course then I knew that I was seriously ill, thought that it was something like kidney cancer perhaps bladder cancer and we wished it was something a little less. Waiting 2 weeks to get seen whilst showing major symptoms was pretty bad. Some of the other waiting was as bad as that. The appointment after the first operation was a major worry as we needed to see how invasive the cancer was. It was early invasive and they did the second operation to check that out.

Waiting for those results was more worrying but the meeting wasn't what we thought it would be - things were a lot better and it was CIS. So much better that they had to go and re-check their results! The return meeting was a bit worrying as well as casting doubt on the good results worried us but of course the consultant was doing her job "belt and braces". CIS is pretty dangerous but in my mind not as dangerous as the invasive (I have been known to be wrong)

This time, we know that the outlook is good, I was told that and also that the smallest scrapes was done - if they do anything larger you get catheterised. So I'm going today hoping to get some good news. Something this time that is proactive rather than reactive. All will become clear later today.

Monday, May 14, 2007

One Year Ago Tomorrow

Was another defining day.

It was the day I went up to London and was interviewed for the job I had last year. How strange are these coincidences or perhaps we just see patterns in such things (or I do - sad old g*t) :-)

Anyway, a whole year ago and I remember being so excited about the possibilities and the challenge of the job. It would be the 23rd of May that I actually started and I remember going up to Yorkshire and spending a week there coming home through the Friday night bank holiday traffic wasn't the greatest of fun but, even so, they were exciting days!

I haven't given it a thought about whether or not things would have turned out different if I hadn't have been ill. I actually think that there may have been some interesting personality clashes at some point in time but hey ho - let it go.

Tomorrow - a Defining Day

In all ways really. The main event will be getting to see the consultant and getting the news about what the next steps are going to be. The next is this job offer (of sorts) on the table. I've got all the paperwork and it all looks too good.

I can only fault a few pieces of what I have received so far. I'm relatively cautious on this sort of thing and so I am giving it a lot of thought. There appears to be a lot of data and details to take in and so far, I'm pretty taken with the ideas and the potential. Can't say more - sorry.

So by this time tomorrow I should have an answer about my future health and well-being. A bit later I imagine I'll be testing the ideas for the job with some colleagues as we are out for the evening.

Perhaps by the end of this week I can have lined myself up with something useful to occupy my time? I'll know when I'm due in and out of hosiptal and I'll have a fair idea how much time I can devote to work and also and almost more importantly I can get some holiday planned.

Blimey look at the size of that!

Sword that is.....

As promised a week or so ago. That chap in the middle holding the sword is me. This is the inside of Freemasons' Hall in London at our annual meeting. I was desperate to be fit and well to do this. I was meant to do this twice in my year in office but was in Hospital last September and had to miss it but, luckily it meant my deputy was able to fill in for me. We met on the day and he was pleased that he had the opportunity but not happy it was at my expense but, what it meant was that we both got a turn to do this during our year which was fair.

Anyway, a very happy day for me and at one time, one I thought I'd never manage especially when they started moving my March operation back in time!


That's encouraging

I lost another kilo (2.2 Lbs) last week!!! I am pleased as punch about that. I thought I felt a little better and lighter.

The week before it sort of stood still - well the scales were flashing up and down half a kilo so I took the middle and reckoned I'd stayed the same.

Weighing myself this morning I was expecting a similar story or perhaps to have added a bit more but obviously the exercise and remainder of the week's diet has seen me OK. It is amazing considering the two 3/4 course meals I had during the week.

So I have lost so far 9 kilos - that is almost 20 Lbs. The strangest things is that only those people who haven't seen me for 6 or 8 weeks or more would notice! But, anyway, really pleased with that and although it is a bit more than the Doc wants me to lose at least I am not feeling hungry or unwell through doing this.

I do notice the loss on things like fitting into my clothes, exercising - I can really push on with that now and I am on the more advanced programmes and do 30 minutes at a stretch not 3 x 10 minute sessions. I also go further on the machine now - close to 5 miles and burn off more calories of course.

Good - that is the way to start off a week - positive thinking.

Sunday, May 13, 2007

Returning to the subject of this blog

I guess that the pressure is off somewhat and that I'm taking a breather from medical problems for a while.

With the issuing of my 50th Birthday invitations this weekend I am looking forward to the birthday I thought that at one time I wouldn't have.

I'm looking forward to seeing the consultant on Tuesday and getting the definitive answer on what will happen next. Whether it is 6 or 3 BCGs and whether it is 3 or 6 months follow up regime.

It is going to be a case of - at least I'll know. Curiously enough that is one of the things that makes things worse - not knowing. If you know you can deal with it. You may not like it, it certainly hasn't been the words you'd want to hear but at least you know and at least you can plan your next moves.

So much hinges on this - like getting that holiday, like a job or getting something approaching a job, knowing when I can realistically start working at that job and stuff like that.

I know I'm doing bits now, have irons in the fire etc but you can tell when you talk to me that there is uncertainty in my voice and I hesitate to commit. My concern would be that I'll let the person down. After Tuesday, I hope to be able to get rid of that problem.

What else? I suppose I then need to get back to working on my fitness and losing weight more effectively. I'll probably lose a bit through the treatment this time. I need to be careful about the timings and any exercises I do. I'll cross those bridges when I come to them.

Seems Like Therapy or perhaps hard labour

Doing the envelopes, folding and stapling address books, treasurer's slips, letters etc and making sure the right ones went in the right envelopes.

Anyway - it is mostly complete and the remainder are coming from the printers tomorrow so I will have my hands full with that.