A strange thing to say but

If there was such a thing as a "good" cancer to get it may well be bladder cancer. It is treatable and generally (in men) you can tell pretty quickly whether you have got it. Most of the people going in with symptoms have the earlier presentation that can be surgically removed or can be treated. The response rates are good and so on. There are of course other issues but generally it is one that caught early can be treated and it appears you can have it recur for a long time and keep treating it.

It occurred to me that not all cancers are going to be like that. some of course are just cut out and that is it. Some are far more difficult to detect and by the time they are detected they may be advanced.

I was explaining that I felt I was very lucky to have bladder cancer and to be in a country where it is treatable.

Lunch with a survivor

It was an interesting lunch time today. A friend of mine who has had his Prostate removed at about the same time I was diagnosed is (of course) now cured albeit, he has a long road to recovery. We met some time ago and between us were comparing war stories.

It was quite therapeutic for both of us I hope to be swapping stories and identifying with the emotions you go though. He had some very dark moments indeed. I've not had such massive depressions thank goodness. We both thought it was fun about how angry we could now get and how quickly that anger could come out although we were able to control it. Then there was the evil sense of humour and interestingly enough this one:

Neither of us waits to get consensus anymore, we cannot spend time prevaricating, and so we just go ahead and make plans and people can live with them or not, we are not bothered about having to get complete buy in.

Also another was the area of pleasing yourself and blow what anyone else thinks and finally one that we differed on slightly, he felt he was more compassionate and I felt that I perhaps hadn't stopped to consider that but I probably would be, I'd just not put it to the test. My one which he didn't share was the occasional "lump in the throat" especially in well made films or documentaries - as I said earlier, don't let me watch Bambi - I'd be in bits....

It was a very enjoyable lunch and it is great to meet someone who has been through what you have been through and feels the same as you do.

Let that be a warning to .............

ME.

So all the fuss and worry about what the "idiot" was doing at work came to not a lot. I made a few calls then called them and it was just a badly worded e-mail, in fact it was a non event really.

So "Warning to Self". Stop, take deep breath, it's not personal, they are not out to get you. Slow down and take it easy. Now I normally do these things and I am normally cool calm and collected so it is obviously something to do with me getting worried about getting back to work, trying too hard to re-make my mark back there or some such thing. So I am warned and ready for the next one. Communicate by phone it is easier better still look them in the whites of their eyes!

Anyway, anger has been managed, sense prevailed and I only got angry on this blog and not elsewhere so that is alright then!

On to the next challenge :-)

Do not read too much into these posts

I use the blog to get things off my chest and occasionally it can look like I'm severely depressed but I'm not really. I don't think I'd post at all if I was that down.

So the blog is about how you feel and the things you think. I can get morose and dark but it doesn't last long as I take out out on the blog here and then it is gone.

Thank Goodness only 2 days to go

Then I am on holiday (Vacation). I have plenty to get on with but I have one idiot who obviously wants to get some point across and yet can't say or ask a straight forward question. You probably know the sort of thing that you read and you think; "Hold on, that question is loaded" Well it is like that, the way the questions are worded and phrased and their general ambiguity are ringing alarm bells. I know the answers yet it would probably be best for me to go and do a day or two research. That of course is a waste of time but it may get the point across.

And the moral of the story is? When you have had your life changed you really cannot see the benefit of office politics, transactional analysis and all that psychic mumbo jumbo. Life really is too short.

Just because you're not paranoid doesn't mean they're not out to get you.

What if I am one of the 30%

The BCG treatment and maintenance appears (depending on where and what you read) to have a 70% chance of working. If you end up being one of the 30% then there is a 50% chance that the next go with BCG will sort it. They are pretty good odds. Of course if you are one of the 30% then you only have a 50/50 at the next go but even so, they aren't bad odds if you think about it. It's not as if you are doing the lottery at about 47,000,000 to 1!

Mind you, I still don't know how I'd feel to be one of the 30%. The best thing would be to be seeing the Urology Nurse again soon after the biopsies are done and be on the Maintenance course. You'd have thought that wouldn't be so but if you get the nod you then go for 3, 6, 12, 18, 24 & 36 month instillations of BCG (you get a course of 3 each time not the 6 like I've just had). Not sure if these go all the way out to year 10 like the US Dr. Lamm protocol. I suppose I'll find out soon enough.

Losing Patience

I do find that I am losing patience with people these days. I suppose that before I'd be quite happy to listen to them and think they were stupid and just get on with it. Now, well, life is too short really! I can hardly believe the utter bollocks people come out with. I've also noticed that I am treated differently which is great fun and could be exploitable. This is going to be interesting. On one hand some people are just being plain stupid and thick (either on purpose or they really are) and on the other they are being patronising and acting as if I have somehow had my brain scraped! Oh the fun of it all. I shall enjoy getting back to work - if they don't sack me for being belligerent that is.

I haven't heard this for a while

Whilst in a conversation with an old friend today - "Like pissing razor blades" was muted as an accurate description of one of the side effects.

Yep, I'll go along with that if you don't have some pain killers that is.

Long old day

I think I'll have to call it a day soon and go downstairs and relax in my chair. I bought myself a recliner chair so that I could relax after treatment and it is great.

I don't know quite why I didn't get much sleep last night and it is the first time I've had to take tablets in the morning to settle things down.

I read something interesting about the treatment and that is that it is now that the Immunotherapy has reached its full potential and is at its height so it is the build up that gets you to this level and the immune system is now doing its bit on its own - hence you don't mess about with it for 3 months then as it carries on working.

Clever stuff.

Whoa Calm down Tiger

I think I said earlier you can get some wild mood swings. Logged on to work - a right arse hole message in my inbox. Something I have been saying since I joined, turned around and played back to me as if it were their idea. Coupled that with a conversation I had with them last week and that is in there as well played back to me.

So - do I yell at said s**t for brains or just reproduce the 20 odd memos and say why are you asking me when I've been asking you the same question all the time? Luckily I have gone into calm down mode after explosive mode. The trouble is this would normally not get me this angry I'd be able to treat it with the utter contempt it deserves and move on. These days, I just get really pissed off with people wasting theirs and my time and frankly being stupid.

On the flip side of this mood swings stuff I also need to avoid anything that is sad especially kids in hospitals with horrible diseases etc. Also stupid things on TV can just catch me unawares too. I hope they don't show Bambi over Christmas - I'll be wasted :-)

I also hope when I get back to work not to be too aggressive towards them. Generally when someone comes out with a stupid remark I might look at them a strange way or ask them to repeat themselves until they realise but judging by the anger I've just felt with this, I've got a feeling I may just tell them straight out which way "up" is :-) I could have well lost all my carefully honed people skills. Out of my way Ricky Gervais, let me show you how I run my office :-)

That's Over!!

Perhaps I should be screaming that from the roof tops? Not in my PJs and Dressing Gown - better not :-)

Wow, that is it, all over for now. No disturbed Monday and Tuesdays. I'm looking forward to the end of this week too as it means I can finish work, sort out my office and all those little things I need to get done and then have a relaxing Christmas and New Year.

9 Weeks

That is what I was told yesterday. Expect the letter to come in in 9 weeks and to be in in 12 weeks to see how the treatment has worked.

Long time to wait isn't it? Mind you, I doubt I'd feel particularly up for going in at the moment after 6 weeks of this.

Not the best of nights

That was a pretty bad night. The symptoms were more manageable than before - you get used to them and you manage them but this morning I'm a little bit sore and I only got about 3 hours sleep. I managed a couple of hours into the evening so that may account for it.

I can't say that I should be feeling any worse than normal (whatever normal is) there is no reason I can see. It is quite peculiar I feel quite out of it this morning. I'll let today run its course and see how I get on.

Tell everyone or keep it to yourself?

My guardian angel - before I was diagnosed told me to tell everyone that I was ill and to share it around as much as possible (or words to that effect). I think that, for me, that has worked and this blog has been great. The blog is good because other people can look too and perhaps get some crumb of comfort from the fact that it isn't "just them".

I'd probably be the sort of person who would share all of this stuff anyway although I hadn't really thought about blogging it, sending out e-mails on my condition would be normal.

I think it would be very bad for me to have just locked myself in and become quiet and non communicative about it. I can't see that it helps a lot as the only opinion you can seek is your own and frankly I still don't trust, even my analytical and intuitive, bits of my brain to come up with all the right or even sensible answers. The phrase "you need to get out more" applies in spades :-)

The only downside I've noticed is the look of concern on some people's faces when they meet you and perhaps I'm not communicating enough about the good things or perhaps I'm not continually reinforcing the message about how well I feel etc.

To answer my own question - do what my guardian angel said and tell as many people as you can and it will make you feel a lot better than bottling it up and keeping it to yourself and your overactive imagination.

Thoughts on the BCG Treatment

I found the whole set of treatments manageable. The first treatment is a bit of a non event apart from the waiting and the worry about the catheter which really isn't that bad. I'd rather do this than have a blood test and I'd rather have a blood test than a cannula shoved in me so it isn't that bad and I am squeamish.

The lack of side effects at week one was an issue as the side effects at week two were unbelievable, like getting hit by a truck as I tell anyone who cares to listen. The books and even the nurse doesn't really tell you it is like that. My Consultant did. I was told not to drive or fly or attempt anything too ambitious and yet I feel that whilst that applied to the second week, ever since I have been well enough to travel albeit I wouldn't want to go more than say 30 minutes at most from home just in case I needed to find a toilet. Towards the end of each week you get progressively better at this. I have my treatments on Monday that wipes out most of Monday and generally Tuesday morning as well although I have been up and about since the third treatment on a Tuesday I still have minor side effects for the remainder of that day which of course gradually get less and less.

By weeks four and five I was getting into the swing of things and you get into a routine. Shower an hour before, set up the bedroom and bathroom for the coming turning and side effects etc. These little rituals also help to bring about a bit of calm. To start with my whole Monday was wiped out, all I could do on the PC was to play games and let those eat away the time. Now I can do work and add to this blog and do other things because I don't have to worry so much about it. It is still a little concerning of course but it is manageable and soon will be the last one and I can forget about them.

I hope it has worked - I really do. Someone posted (elsewhere) that the level of side effects does not affect how the BCG has worked. Feeling and seeing what it did do - it has done something - it is just the hope that it has done what the Consultant has set out to achieve. If we can get this manageable and able to maintain it I will have got the very best I could have hoped for.

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!