Now to learn to live with this going forward

So the Treatment is over and my bladder has been scraped, bruised, battered (not like the fish batter), and finally has been in contact with live BCG. And that is after it had Cancer. I'm beginning to feel very sorry for this poor little thing :-)

Anyway, from this point onwards, I now have to work with living with it - Cancer that is. Whatever the outcome of the treatment and that won't be know for 3 + months there are some things that most (if not all) cancers have in common and that is that they can come back. It is quite frequent in bladder cancer to find that a tumour will come back and that it will have to be scraped away again. It also means that I'll be in and out of Hospital a lot for the foreseeable future as they need to check up regularly and I may also end up on a regular maintenance of BCG (if I am lucky) so my next steps are to settle down and get back to "normal" and to live with these things. I'm guessing that everyone will have to do this and the Cancer Research site gives some good pointers about this on their site.

You go through just about all possible emotions and personality types. Some will cope with them differently and it will take different times to do so. It will be interesting now that I will get some more time to reflect on this what I am going to make of it.

A friend of mine told me this was going to be like a Roller Coaster Ride. Once you were strapped in there was NO WAY you could get off the Roller Coaster, you had to go where it took you and there were going to be bits you liked and bits you hated, sudden changes in direction, loop the loops, dark places, water splashes (I put that in here I can't think what that would allude to!) and so on. You could only get off the Roller Coaster when it had stopped and it was safe to do so.

It feels like I have just completed one circuit and the carriages have pulled into the station. I want to get out but I've been told to stay on board. I have to wait and it takes time to fill all the carriages but I know that soon I'll be on my way again. I should be a lot better this time - I know what to expect (or I think I do). I'm more knowledgeable about what is going on and I can learn to tackle the bends and loops easier. I can even begin to enjoy some bits of the ride and occasionally we could get switched to a quieter length of track altogether. I'm on the quiet stretch now, there are no high speed bends, no loop the loops and the dark places are few and far between. I can see the scenery now, everything looks fine and nothing is blurred. I have to stay on the quiet track for another 3 months and then I'll find out which track they want me on next.

I think I'd be very disappointed if this treatment didn't work this time. I need to build myself towards getting that news in a way that keeps me positively focused on sorting this out yet realistic enough to realise that I shouldn't expect this to go away. It will be interesting to see how I can do that in the coming months.

6th and Last Treatment

Of this session that is. It is the morning before the last treatment. I slept well but I had a good day yesterday which probably helped.

Once today is out of the way then I have three months, a quarter of a year, to wait to go into Hospital and have the biopsy operation and I suppose two or three weeks after that to hear the results. It seems an awfully long time but perhaps I can use it to normalise my life, it having been far from normal for the last 5 months. Perhaps I'll be able to do some reflecting on things as opposed to just having it happen to me, who knows?

Yesterday was good. Many people worried about me but also very pleased to see how well I looked. We had a great Christmas Lunch and as usual a table of great people with whom we had a lot of laughs. On arrival home, the girls and I lit the fire and sat down and watched Oliver and MIB II so a good day topped off well too.

The Trouble With Finding Out More....

Is that you get to read things that you would rather not have done. You get to see people far worse off than you are which cruelly gives you a lift but it is the long term statistics that get you. I am a complete newbie at this - 5 months since my first symptoms. Some people have had this 20 years or more and it is quite common for them to have recurrence of tumours; have a few years clear and then have to go back in again.

It could be that those who don't have this problem, those that have no recurrence just never write into to these online forums (I suppose they don't have a need to). I was also somewhat horrified to find out that CIS (Carcinoma in Situ) which is looked at in other Cancers as quite treatable is in bladder cancer quite treatable but also considered a very aggressive form. If you look at Insurance cover it states that you cannot get a pay out on CIS. So I suppose you also get conflicting information you need to sift out.

The mortality rate for CIS is good and dependant on what you read the treatment I am on now is good in 50 to 80% of cases. I guess the worst bit now is going to be waiting for 3 months to see if it worked.

So what else is wrong with finding out more about your own disease? It makes you a real bore :-) I am out today at a Christmas meal with about 100 or more people, I hope that I don't become a bore doing my "Yes I am feeling well but I won't know until next year", "No I will probably not be cured but they can control this for life for me". Perhaps I'll just go and prop the bar up for a few hours instead!!

More Information

A trawl through the Internet brings many sites of interest and a few you'd really wish you had not seen.

Here are a few worth looking at to find out what this is all about.

Click Here for the Cancer Backup Site
Click Here for the Cancer research Site - you can find out just about anything on this site
Click Here for the Bladder Cancer Web Cafe
Click Here for some more on a fact sheet

There are more like this but the basics are available to run through.

Almost Looking Forward to Monday

Strange but true. Last treatment (for the moment) and I'm almost wanting to get there and get it over and done with. I think I'll give a miss to the wag who reckons that I shouldn't take the pain killers and everything so that I can really feel that it is working. Mmm, thanks for that bit of advice but I choose to ignore it :-)

I'm feeling a lot better today, last week was a dark week for some reason. Anyway, just banged out close to 1000 e-cards this morning and now need to finish off the snail mail ones and that will be me done this Christmas. All cards done, all presents done and wrapped up. Cool!

End the week on an up beat note

I have a guardian angel who reads my blogs and picks up when I'm feeling a bit down in the mouth and drops me a little note to cheer me up which on a murky old Friday night has just happened.

I think I can put this week behind me now and move on - I've got things to do this weekend and next, I'm going out and meeting people and I'm going to have a good time come what may!

I'm really grateful for those little pick me ups I get.

Snake Oil

I was amazed how many "Snake Oil" sales people cash in on people's woes, despair and the downright terror you get with Cancer.

All sorts of stuff is being plied as a cure or some sort of help. Call me a cynic but I think my specialist would have told me if ground bat's droppings were the thing to be on? I suppose that it may just be me who finds it offensive to take advantage of anyone like this yet you can find this sort of stuff through a search on the Internet. I like the ones that are Scientifically proven and yet have some old Doris from Wisconsin telling you how it cured her as the single source of the miracle of the slightly dodgy stuff they bang out. Judging by the price of this stuff, it would be cheaper to buy a gold bar and swallow it - it would probably do you more good too!

Whinge over for the moment :-) Have a nice day now!

And another one

Who thought that it was hoped that my medical problems were behind me now. I suppose it is only natural for people to think that way and I read some things about other cancers these days and don't like what I read so I'd probably not understand someone else's condition, nor would I specifically go out and read about it unless they were perhaps closer to me.

So I suppose I shouldn't get angry about it. I find it quite difficult to wrap up in a few words exactly what my future holds for me anyway as that isn't exactly clear at the moment. It is quite an uncommon Cancer I suppose, I hadn't heard about it before I was diagnosed - heard about the big ones - Lung, Prostate, Throat and Breast etc., but Bladder - no never heard of it yet it is the 4th most common in men.

Anyway, just another of those things where I know that I'll be under long term observation (at best) and that I will not be fixed by Christmas this year or perhaps next year either or the year after that. I'm still coming to terms with that aspect of it and I've not got there yet so explaining it to someone who thinks this course of treatment is the end of things can be quite difficult.

Let that be a lesson

I was really tired yesterday. I am guessing that I am really not quite as fit as I feel and going out on Wednesday evening, walking to the venue and being out and not resting at home all contributed. Not that I feel ill or anything - I was just tired.

I will have to build up gradually if that is the case. I've planned a few outings after my last treatment next week. I shall make sure that I am fit enough to do them.

It all adds to this week's underlying theme of being quite angry. I'm angry about most things; work, insurance, fitness, perceptions, being stuck at home etc. I will work on getting that out of my system and "kind of" looking forward to the last treatment on Monday.

Tired? I'm Knackered

Well my little excursion last night brought something home to me. I am really knackered this afternoon, I'm yawning and can't concentrate - I'm going to take myself off for a lie down.

And my other computer has just blue screened - oh great :-) I can see next to nothing getting done here this afternoon if this keeps up.

Just cannot get going this morning

I cannot get going at all this morning. I've a piece of work to finish and I have sat and stared at it for 30 minutes and not done anything with it. I'm feeling quite tired too. Perhaps going out last night and the walking has just tired me out?

At the risk of repeating myself

I was asked if I was "better" last night. I suppose the answer is yes. I'm better than I was 5 months ago. On Christmas day it will be 5 months since the first operation. I'm better than I was when I had that done. I'm better in terms of all around health and I'm better in other ways too.

It is again one of those difficult questions to answer because you look and feel better but I have no idea if I AM better until April next year. Even then I'm expecting that this is a long term thing. So you have to caveat your answers with a yes and no type response. "Yes I'm better but no I'm not cured" or some such thing. As most people start off a conversation with "How are you?" it can be difficult answering that honestly. "I'm fine" doesn't cut it neither does "I'm getting there". Trying to explain that you are well but you are really (actually) ill and will remain so for a long time is quite difficult to phrase easily.

As I really haven't been in too many social events these past months it should be interesting to see how a number of people react to me on Sunday as I am going to a large Christmas Lunch. I'll see if I can come up with any easy to use responses to "how are you?"

Life is unfair - I feel a fraud having read these

I think these are really special blogs and bits of news. I know that I'm ill and all that but take a look at these and go stare someone in the face about your troubles.

Sophie's Blog

Josie

Let us all remember our place and how lucky we really are.

Oh you look well

I was just amusing myself over at the Bladder Cancer Cafe HERE there are some great stories and some very sad ones to. It is a good place to go to some of the time. I have to say that it can actually work the opposite way and make me quite depressed too.

However the humour section made me laugh and I thought I'd share some of the more trying moments with you.

I met up with someone who said "Wow you are looking great" to which I retorted "They didn't operate on my face!"

Too many people think that if you have Cancer you look frail, have no hair and are sick everywhere. Not true - the trouble is that even though you can't see it, it is pretty serious and it isn't one that goes away easily. Ho hum...

The Long Distance Pee

I seem to be back to the every 15 minute routine (actually it hasn't been that bad). I can't see that I have drunk anymore than I normally do. Perhaps I ought to keep records. I do on treatment day so I know how many pints of water I have had post treatment and when I went and what the results were.

It has actually settled down now but late this morning I was in and out all over the place.

Navel Gazing

Strange past time. Trying to get people to look up and ahead is interesting. You can warn you can explain, you can talk but you cannot make people listen. It amuses me no end when we get to the point where it has all gone pear shaped and I wonder whether to utter those word "I told you so". The fun part is the person it happens to has absolutely no idea what is coming down the road to hit them and it comes as a complete surprise.

One of my favourite sayings is "I may not always be right; but I am NEVER wrong".

Not a lot better this morning

I can still feel the anger inside me. Whilst I'm not as angry this morning as I was yesterday I have to admit to being quite up for an outburst or two at this moment. It is probably the way I am feeling about myself and what I have and why no one else can see it the same way I do - I think.

I didn't know anything about Cancer before I got it and so it would be difficult for me to understand a colleague or friend with it. In fact, it was only after I got this that I fully comprehended how some of my friends who have gone through other Cancers must have felt, hurt and recovered.

Perhaps I need to communicate more and try and give them some understanding of what it is really like? The trouble is, you tend to sound "attention seeking" or worse "self centred" but you don't really mean to be. My "honest this is how it is" approach also has its drawbacks as it is probably too much detail and quite disturbing?

So perhaps that is it. Work, in contact with real people (face 2 face) looms large and perhaps their grasp of the situation will need managing so that they get it.

Right, that's enough of the deep and meaningful stuff on a Wednesday - time to get on with some work.

An Angry Day

Tuesday has been an angry day. I didn't get done what I wanted to get done. Stuff got switched around and totally screwed my day up. I had a sense of humour failure on a number of things. the Insurance, Work, Projects and generally me being fed up.

I hope tomorrow is a little bit better. Not that I don't feel well, just one of those days. I must be careful not to use the "who gives a s**t" sort of answers when discussing some insignificant point at work. Careful son, careful :-)

I'll bid you good night as I ought to get some sleep and forget about today altogether!

I don't think they got it

Yes, I'm certain that some people didn't really listen when I said I'd be back at work in January full time they have taken that to mean that this is the end of my treatment. In fact that is probably far from the truth. I am expecting that this is the beginning of my treatment. Let me explain:

The Cancer grade meant it needed an operation to get it manageable. The second operation was to attempt to get the grade to CIS which it is. After that - then treatment can begin. This batch of treatments are to stop recurrence of tumours. I thought I had explained that to them.

If this is successful then maintenance is an ongoing thing, for many years to try and control this.

It looks like I'll be explaining it to them slowly again until they wake up and get it.

FUD

Fear, Uncertainty, Doubt = FUD